what impacts does society have on children with intellectual disabilities?
what are the effects of (children with intellectual disabilities) being socially included through sports?
what are some pros and cons of social inclusion for children with intellectual disabilities?
who are the main facilitators for this social inclusion for children with intellectual disabilities and what roles do they play?
how can society work to include more children with intellectual disabilities to activities or any other aspect of life?
connect all of these to the social capital theory !!!!
Promoting social inclusion through Unified Sports for
youth with intellectual disabilities: a five-nation studyjir_1587 923..935
R. McConkey,1 S. Dowling,1 D. Hassan2 & S. Menke3
1 Institute of Nursing Research, University of Ulster, Newtownabbey, UK
2 Ulster Sports Academy, University of Ulster, Newtownabbey, UK
3 Special Olympics Europe/Eurasia, Brussels, Belgium
Abstract
Background Although the promotion of social
inclusion through sports has received increased
attention with other disadvantaged groups, this is
not the case for children and adults with intellectual
disability who experience marked social isolation.
The study evaluated the outcomes from one
sports programme with particular reference to the
processes that were perceived to enhance social
inclusion.
Method The Youth Unified Sports programme of
Special Olympics combines players with intellectual
disabilities (called athletes) and those without intel-
lectual disabilities (called partners) of similar skill
level in the same sports teams for training and com-
petition. Alongside the development of sporting
skills, the programme offers athletes a platform to
socialise with peers and to take part in the life of
their community. Unified football and basketball
teams from five countries – Germany, Hungary,
Poland, Serbia and Ukraine – participated. Indi-
vidual and group interviews were held with athletes,
partners, coaches, parents and community leaders:
totalling around 40 informants per country.
Results Qualitative data analysis identified four
thematic processes that were perceived by infor-
mants across all countries and the two sports to
facilitate social inclusion of athletes. These were: (1)
the personal development of athletes and partners;
(2) the creation of inclusive and equal bonds; (3)
the promotion of positive perceptions of athletes;
and (4) building alliances within local communities.
Conclusions Unified Sports does provide a vehicle
for promoting the social inclusion of people with
intellectual disabilities that is theoretically credible
in terms of social capital scholarship and which
contains lessons for advancing social inclusion in
other contexts. Nonetheless, certain limitations are
identified that require further consideration to
enhance athletes’ social inclusion in the wider
community.
Keywords intellectual disability, leisure, social
inclusion, sports
Introduction
The vision of social inclusion for people with dis-
abilities is contained in various Rights Statements
such as Article 19 of the Convention on the Rights
of Persons with Disabilities (United Nations
2007) and in the policy documents of many
Correspondence: Prof. Roy McConkey, Avenue Jean Burgers 4,
1180 Brussels, Belgium (e-mail: r.mcconkey@ulster.ac.uk).
Journal of Intellectual Disability Research doi: 10.1111/j.1365-2788.2012.01587.x
volume 57 part 10 pp 923–935 october 2013
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Governments including the UK (Department of
Health 2009). However, the challenge remains of
translating the rhetoric of rights into reality for
persons with intellectual disability (ID) who remain
among the most marginalised in many societies
around the world (Emerson et al. 2008). The
reasons for this are multifaceted. Many are born
into poverty and this compounds the impact of dis-
ability on their social exclusion within communities.
Even in more affluent countries with their welfare
benefits and support services, many people with
IDs have low levels of social engagement and a
dearth of friendships (Verdonschot et al. 2009).
Also the stigma associated with their disability has
often resulted in their active isolation from society
(Akrami et al. 2006) as in their exclusion from
formal systems such as education and employment.
This in turn reduces their opportunities for com-
munity interactions and friendships (Lippold &
Burns 2009). Arguably, the provision of specialised
services from early childhood onwards has further
isolated people from their peers (McConkey
2011).
Although there has been increased emphasis in
recent years on the inclusion of people with dis-
abilities in formal systems such as education, to
date the results in terms of social acceptance have
been uneven (Ferguson 2008) with similar conclu-
sions emerging from supported employment initia-
tives ( Jahoda et al. 2008). In terms of leisure and
recreation activities, the outcomes have been
somewhat more hopeful especially for children
(Siperstein et al. 2009), although significant barriers
can be encountered for adult persons such as the
segregated nature of their living arrangements,
the economic status of participants, their level of
adaptive functioning and the availability of trans-
port along with a lack of other supports to facilitate
engagement (McConkey et al. 2007; Abells et al.
2008).
Participation of people with ID in sports seems a
fruitful arena in which to promote social inclusion
and this has received increasing attention in main-
stream sports studies for other disadvantaged popu-
lations such as disaffected youth and immigrants
(Coalter 2010). A limitation though is inequality
of access to sport by people with disabilities (Liu
2009). For example, the European Commission’s
White Paper on Sport (European Commission
2007) identified problems with access to sports pre-
mises as spectators as well as to sport facilities and
activities as players. One response has been the
development of specialised sports organisations of
which Special Olympics is the foremost example
internationally for persons with IDs. In 2010, they
claimed to reach 3.7 million athletes in over 170
countries (Special Olympics 2011). Moreover, past
research has documented the benefits for participat-
ing athletes primarily in terms of gains in physical
and mental well-being, sport skills and in self-
esteem (Dykens et al. 1998; Weiss et al. 2003;
Siperstein et al. 2005).
Nevertheless, Special Olympics has been criti-
cised by some for encouraging segregation from
mainstream sports and perpetuating negative stereo-
types of persons with IDs (Storey 2008). However,
its Unified Sports® initiative may be conceived as
an attempt to promote the social inclusion of young
people with IDs with their peers in local communi-
ties (Dowling et al. 2012). This programme com-
bines players with IDs of higher sporting abilities
(referred to as athletes) with non-disabled partners
of average or lower ability level, in the same sports
teams for training and competition. Thus, teams
are formed by athletes and partners of similar level
of sports skills, which generally means the more
able athletes are taking their place alongside non-
disabled partners whose sports skills are weaker
than those of their peers. The teams train regularly
and compete with other Unified Teams in local as
well as national and international competitions.
The programme’s intention is to enable athletes to
develop their sporting skills while offering a plat-
form to socialise with peers and the opportunity to
develop new friendships, to experience inclusion
and to take part in the life of their community.
Unified Sports programmes are initiated through
schools as well as through Special Olympics clubs
and local mainstream sports clubs. In 2010, Unified
Sports® was the fastest growing segment of the
overall Special Olympics athlete population with
nearly 0.5 million participants worldwide (Special
Olympics 2011).
Unified Sports® mirrors similar sports initiatives
with other marginalised groups underpinned by
national and international policies that have lauded
the contribution of sport to social cohesion and the
generation of social capital (United Nations 2005).
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However, as Coalter (2010) observed there is ‘wide-
spread lack of evidence for the effectiveness of some
of the core claims’ (p. 1374). In addition, Hoye et al.
(2009) noted that ‘social capital is not present or
reflected in the membership per se but the ways in
which the membership is used to secure benefit for
the individual or group’ (p. 2). To date there has
been limited research into the mechanisms by
which sporting initiatives have increased or could
increase the social inclusion of athletes. Such infor-
mation would serve to increase the efficiency and
effectiveness of initiatives such as Unified Sports to
achieve their core aims as well as providing insights
as to how greater inclusion may result for people
with ID in other contexts such as education and
employment.
Aims of the study
This research was commissioned by Special Olym-
pics Europe/Eurasia under a competitive tendering
process. However, the specific aims of this study
were developed in consultation with an Advisory
Group established for the project and in light of
pilot studies undertaken. They were:
• To describe the contributing factors that promote
social inclusion within the context of Youth Unified
Sports® as perceived by five main groups of stake-
holders: namely athletes, partners, coaches, family
carers and community representatives;
• To determine the extent to which these factors
are present across two different sports and five
different countries; and
• To identify the implications for the further devel-
opment of Unified Sports®.
Research design
A qualitative approach was used in gathering infor-
mation as this enabled informants to share their
personal experiences and insights with respect to
Unified Sports® and the impact it has on social
inclusion. Each country was considered initially as a
single entity with triangulation of responses possible
across the different groups of informants. However,
the findings could then be compared across the five
countries to determine the extent of replication
especially of the dominant themes identified in
the data analyses.
The study population
Youth Unified Sports® is an evolving programme
that now operates in 28 countries in Europe/
Eurasia. In 2009 an estimated 16 000 players aged
12–25 years were involved. It was agreed to focus
resources for this study on a number of selected
countries within the region where the programme
was better established and to focus on its two
main sports: seven-a-side association football and
basketball.
The inclusion criteria for the selection of coun-
tries were:
1 The national Youth Unified Sports® programme
and its teams had been in existence for more than
1 year.
2 There were sufficient Youth Unified teams who
meet regularly for training and competition to allow
for sampling of teams within countries.
3 There was a geographical spread between
Eastern, Western and Central Europe.
Initially, eight countries were considered to have
met the criteria and five were approached, all of
whom agreed to take part, namely Serbia, Poland,
Ukraine, Germany and Hungary. Across these
five countries over 200 teams were known to the
national co-ordinators of Special Olympics involving
over 1600 athletes, 1200 partners and 250 coaches.
Overall, male athletes exceed female athletes
(81% male) as do male partners (87% male),
but the gender ratio is slightly less with coaches
(75% male).
For purposes of this study, within each country
local competitions were arranged for varying
numbers of Youth Unified teams in two or more
locations. In all 55 teams were represented across
the five countries involving 156 athletes, 106 part-
ners and 65 coaches. Information about all the
players was provided by the team coaches using a
standard pro forma.
The gender balance across the 55 teams was
broadly similar to that of the wider population
throughout Europe/Eurasia. However, for the
chosen sample of teams, partners tended to be
younger than the athletes: 44% compared to 21%
were aged 12 to 15 years. Also athletes had been
involved in Unified Teams for longer than partners.
Over two-thirds of athletes had been involved for 3
or more years, whereas this was the case for only
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12% of partners. This suggests that the turnover of
partners may be greater with most staying for 1 to 2
years. This could be a reflection of partners leaving
school and going on to further education or taking
up employment.
Another marked difference between the athletes
and partners was in terms of the school they
attended. All but one of the partners attended
mainstream schools, whereas athletes mostly came
from special schools (92% in all). Moreover, around
one-third of the athletes lived in institutions/
boarding schools, whereas nearly all the partners
lived with families.
An estimate was made by informants of the eco-
nomic status of participants’ families. Over three-
quarters of athletes (78%) were rated as coming
from low socio-economic families, whereas this
was the case for 11% of partners, 89% of whom
were from middle-income families.
Sample
In line with the aims of the study, in each of the
five countries individual interviews were conducted
with five athletes, with five or six partners and five
coaches as well as group interviews with on average
four teams in each country. In addition, around five
parents of athletes and partners were individually
interviewed as were four or five community repre-
sentatives such as head teachers of schools and local
politicians. The latter two groups had been invited
by the local organisers for Unified Sports to attend
at our request. Each sample included people of
varying ages and backgrounds. In addition, back-
ground information was provided by the five
National Co-ordinators for Special Olympics in
the five participating countries.
Method
Information was gathered through face-to-face
interviews based on a standard topic guide with
suggested trigger questions developed from the
aims of the study, past research and a pilot study
undertaken with Youth Unified Sports® teams in
England. The focus of the interview was on gaining
an insight into the participants’ experience of
Unified Sports, their perceptions of the extent of
social inclusion, the factors that assisted or hin-
dered this and the improvements they would
propose. Throughout a conversational style was
encouraged and interviewers were responsive to the
interests of participants and points raised by them.
In each country, two or more researchers from
local universities were recruited with experience of
sports or disability research and who were fluent in
written and spoken English. They were responsible
for translating all the written materials into local
languages and for translating the interview data
into English. Face-to-face training was provided
in-country on qualitative interviewing by a member
of core staff (S. D.). Video recordings of simulated
interviews were used along with role plays for prac-
tising techniques. At least one member of the core
staff was present at all locations for data gathering.
The data gathering was fitted around a 1-day
competition among the participating teams in the
chosen locality. This provided an opportunity for
researchers to observe the sports in action as well
as giving the teams a valid reason for attending and
providing an enjoyable experience. Prior to the
competition event, information sheets and consent
forms were circulated by local Special Olympics
staff to all potential participants. These described
the study, outlined what was required from partici-
pants who agreed to take part, emphasised that the
anonymity of participants would be ensured and
non-participation in the study would not affect their
membership of Unified Teams. Signed consent
forms were completed by all participants, and for
those under 16, their parents consented to their
participation.
Interviews were conducted as people became
available while waiting for their next game. Team
interviews were generally undertaken first followed
by individual interviews with athletes and partners
who either volunteered or who were invited to be
interviewed. Interviews with coaches generally came
towards the end of the day, but those with parents
and community representatives took place through-
out and according to their availability. The inter-
views were conducted in a separate room or in a
quiet area inside or outside the stadium. They
usually lasted around 15 min.
All the interviews were audio-recorded using
digital recorders. These were then translated orally
into English by local researchers and these audio-
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recordings were sent to the core staff member
(S. D.) who transcribed them verbatim. Names and
identifying details were removed from the data so
as to protect the anonymity of participants with
codes used to identify the country and informant.
In the quotes below, the country is identified first
(G – Germany, H – Hungary, P – Poland, S –
Serbia, UK – Ukraine), followed by the informant
grouping (A – Athlete, C – Coach, CR – Commu-
nity Representative, P – Partner, Par – Parent, T –
Team) and then the allocated number within that
grouping.
Data analysis
The approach used to analyse the data was
informed by interpretative phenomenological
analysis (Smith et al. 2009). Initially, the data were
analysed for each of the five countries. Interview
transcripts for all informants were read and reread
to enable a deep familiarity with the text. It was
then coded according to the main themes and sub-
themes which were evident in the data. A second
round of coding was then undertaken to compare
the themes across the five countries and to check
for variations by sport and informants. The identi-
fied common themes were then revised and
grouped. It was evident then that data saturation
had been reached in that no new themes emerged
from the later stages of data gathering. Selected
transcripts were read and coded by more than one
member of the core team to facilitate checking of
themes. A similar process was used to identify
themes across the countries. Also as a further vali-
dation check, a summary of the main findings was
sent to our University partners as well as to an
invited group of National Co-ordinators for Unified
Sports® from countries who did and did not take
part in the project.
Findings
All the informants confirmed that
Unified Sports
had resulted in greater social inclusion of the ath-
letes, foremost through their regular engagement
with the coaches and partners for training and com-
petitions but also in terms of shared activities away
from the sports field. However, our main emphasis
was on their perceptions as to how this had come
about.
Figure 1 summarises the four main themes and
subthemes to emerge from the data relating to the
perceived success of Unified Sports in promoting
the social inclusion of the athletes. Although there
were some variations across different groups of
informants and across countries, the similarities
in responses were much more striking. These four
themes are described separately in the interests of
clarity but each are related to the others.
Personal development of the athletes
and partners
The personal development of both sets of partici-
pants was seen in terms of sporting skills, interper-
sonal skills and opportunities offered to them
Personal Development of
Athletes and Partners
•Sports skills
•Personal skills
•Access to places
Inclusive and Equal
Bonds
•Focus on teamwork
•Role of coach
•Friendships
Social
Inclusion
through
Unified Sports
Positive Perceptions of
Athletes
•Attitude change
•Special Olympics events
•Media publicity
•Families
•Schools
•Community and sports
Organisations
Building Alliances
Figure 1 The main themes and
subthemes perceived to promote social
inclusion with Unified Sports.
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through Unified Sports, all of which contributed to
participating fully in the teams. Both the athletes
and the partners variously report improvements
in their skills on the sports field, in relation to
improved stamina and technical skills which were
endorsed by coaches and parents.
We used to have to take it easy in training with
the athletes as they got tired very quickly, now
they want to go on and on, even after we partners
have had enough. (UK-P02)
I think I play football much better than before,
my technique is much better, like ball control –
passing and shooting and being in contact with
other players on the field. (S-A05)
Having improved abilities in sport led to an
increase in their status among peers at school and
in their communities.
. . . the athletes who are involved become more
popular after taking part in Unified Sports, they
are like celebrities in school when they come back
with medals from a competition, and that they
hang around with kids from the mainstream
school gives them higher status here in the
special school. (S-CR01)
All informants commented on the improved
interpersonal skills of the players. These include a
growth in self-belief and self-esteem and the devel-
opment of confidence as well as improved commu-
nication skills.
I am a more confident person now. I am not shy
to talk to people. I will hold my head up and
speak out loud. I got more used to people in
playing on my team and I am not afraid of
people that I don’t know. (H-A01)
One house-parent from an institution where some
of the athletes lived also remarked on how their
self-esteem has grown:
The boys I know, I can see the difference when
they are at home, they are calmer, they do not
have to prove themselves in arguing or something
like that, they are able to be more sure of them-
selves. (H-CR02)
Developments in communication skills were not
restricted to athletes; partners also described new
learning:
At first (when he first joined the team) it was a
bit difficult because I didn’t know all these
people and I couldn’t communicate with them in
the same way that I did with my friends, but in
just a few days this problem disappeared and it
was very easy to communicate with these people.
(UK-P01)
A third subtheme with respect to personal devel-
opment was the broadening of opportunities that
Unified Sports athletes had of experiencing com-
munity life through their involvement in activities
which took them out of special facilities and into
typical meeting places in their communities and
beyond. Through these opportunities there is also
an increased visibility of people with disabilities in
the community.
My son went to Romania and to Portugal, we
had to look Portugal up on the map! He learnt a
lot of things and he told us about what he had
seen there, this experience changed him, he saw
something of the world, he came back with his
head high, his mother and I were proud of him
too. (S-P01)
We have a good relationship with the head
teacher here in this school (mainstream) and we
are able to train here and hold some competitions
here too. The kids at this school see our athletes
here and they get used to seeing them. (P-C01)
Some participants also talked about the places
they go socially with one another after training and
matches. Although this was not the experience of all
athletes, some did experience hanging out in places
typically frequented by teenagers.
We go to the town square and talk, or to the
games arcade, or we go for a drink in a café, the
guys from the team know places to go and we go
after training if we all have time. (S-A02)
In sum, Unified Sports provided opportunities
for the young people to develop the skills needed
to become more socially included first within the
teams but then within other social contexts. As one
mother commented:
Through Unified Sports my son has learnt that
he is a worthwhile person and that he can meet
with the kids without disabilities and have fun
with them. He listens to what they say, that he is
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equal and important on the team and he comes
home very happy. Unified Sports has taught my
son that he can be included and he doesn’t have
to hide anymore. (S-Par02)
Inclusive and equal bonds
A second domain related to the bonds developed
between athletes and partners in the teams that
were rooted in respect and equality. The focus on
teamwork was central to this with coaches having a
particularly crucial role. The growth of friendships
among the players was also noteworthy.
We are all needed on the team, there are no star
players, we are a great team and the team is the
star. (H-A02)
There are no differences here between athletes
and partners, we are all the same, the coach
treats us the same and we treat each other the
same. (G-P01)
I treat everybody equally right from the start, it is
important for players and athletes to see that they
are the same in the team. I am also careful to talk
to them in a pleasant way, and to joke with them,
I do not give athletes special treatment and I do
not give partners special treatment and they all
see this and it affects how they treat each other,
they too are willing to behave as an group of
equals. In a Unified team we are all the same.
(UK-C03)
Young people reported how the approach that
coaches take to training impacted on their experi-
ence of Unified Sports. Some compared this to past
experiences they had had in mainstream sports
clubs:
The training we have here is much better and
much nicer than I had before in my table tennis
(mainstream) club. I enjoy it much more here. If
you cannot do something then you are advised by
the coaches calmly of it, how you can do work to
make – for instance if you are a goalkeeper you
are advised of how you can guard your goal
better. (S-P01)
Parents also report in the inclusive culture of
Unified Sports and often attribute this to leaders
and coaches; one parent stated:
I want to talk about the healthy attitude of part-
ners, because their attitude is very good, there is
no negative attitude to children with disabilities,
they do not go ahead with the ball, they give ath-
letes every opportunity to show their skills so that
everyone is involved in the game. This is how the
coaches teach them and this is really working
well. (UK-Par01)
Coaches mentioned the selection of partners and
the need to work with partners as much as athletes
to create a Unified Team.
I do not select kids just for their sporting ability,
I want to know what they are like on the inside,
that they are open and kind. (S-C03)
Now they (the partners) are calm, helpful and
patient, at the beginning they didn’t co-operate
much with athletes, now it has changed. (P-C01)
The growth of friendships among the players was
commonly reported and some coaches deliberately
encouraged this.
Friendship is the most important thing about
being a member of a unified team. We are all
friends both on and off the field. We also have a
good connection with our coaches who I think I
can say are our friends. (S-P02)
We all like sport and we ask each other have you
seen the game last night, and do you know the
latest results and things like that. Sometimes
there is a girl that one of us likes and we talk to
each other about the best way that one of us can
ask her out, we share some of that type of infor-
mation, personal information with each other. It
wasn’t like that from the beginning, but it is now
because we have been playing together for more
than a year and we have become good friends.
(S-A01)
We in the club push people together to do differ-
ent activities, not just sports activities, we want
them to hang around together after school, go to
dances, go to discos, go to towns, and we also
organise for nature walks, and we invite everyone
to participate in this. So we have lots of different
non-sports activities that connect people and
this helps them to spend more time together.
(S-C05)
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For some teams, the relationships between the
players were less equal as evident in the language
used by partners to describe the athletes and how
they viewed their role as one of assisting people
who were less able. In these teams, the extent of
mutual engagement off the playing field was also
not so apparent. This might derive from the atti-
tudes of certain coaches.
I have always felt sorry for these people, and I
always thought it was a good idea to help them
and for them to meet with each other. (UK-P01)
They [the athletes] have the chance to improve
their social interactions, to learn how to behave
with other people who are not disabled; they can
watch partners and in this way improve them-
selves. (UK-P03)
I see them talking together at training and so on,
and it is clear that they are friends, but as for
meeting up outside, I don’t think they are ready
for this yet. (P-C02)
However, other practical reasons were given for
lack of contact outside the sports.
I hang around after training only with those who
live close to me, because lots of us live on a dif-
ferent side of the city and it is not so easy for us
to hang out after training – we have to catch a
bus or train to get home and that is what makes
it difficult. (S-A03)
Unfortunately, as I have to help my father quite a
lot at the house because we have to live off the
farm work that he and the other members of my
family do, after training I have to go straight
home because I have to help. (S-A02)
In sum then, Unified Sports offered the opportu-
nity for inclusive and equal bonds to be forged
among the two sets of participants that extended
into friendships beyond the playing field. When
these bonds were absent, there was less evidence of
mutual participation in community settings.
Positive perceptions of people with
intellectual disabilities
The third major contribution that Unified Teams
was perceived to make to the promotion of social
inclusion was by challenging the prevailing negative
attitudes towards ID that was commonly reported by
all the informants but notably parents and partners.
. . . people must stop being ashamed of these
kids, people in our society still have strange reac-
tions to disabled people, sometimes they are
ashamed, sometimes they are scared. But we have
to talk with these people more, we have to inform
them, disability has been taboo for many years, it
is changing right now, but it is not enough,
people need to have free access to information on
this subject. (P-Par05)
I am ashamed to say that I used to laugh at these
people (people with intellectual disabilities), now
I will tell anybody to stop laughing if I see it and
I will stand up for people if I can. It is wrong to
laugh at these people, but I didn’t know much
before I just did what everyone else did. (H-P04)
The idea was expressed by various informants
that Unified Sports created a kind of ripple effect
that reached more people.
The great merit of Unified Sports is that they
increase the number of people who understand
the needs of people with disabilities, so yesterday
for example there were 10 people, today there is
100 people and tomorrow there will be 1000 of
us and then there will be the whole country who
understands the needs of people with disabilities
and then the society will be able to organise
normal conditions for them. (UK-Par01)
Partners spoke of how their attitudes have
changed.
I think the biggest change in my inner world is
the change of my attitude to people with intellec-
tual disability because working and training with
these people I try to compare people with dis-
abilities and healthy people and I can say that
athletes may be sometimes even more sincere
and open and kind than healthy people you meet
everyday. (U-P04)
Some parents talked about how the partner’s
change in attitudes and how this had influenced
his/her wider family and friends:
He has taught us all really. He tells us, his family
and also his friends at school about what he is
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R. McConkey et al. • Promoting social inclusion
© 2012 The Authors. Journal of Intellectual Disability Research © 2012 John Wiley & Sons Ltd, MENCAP & IASSID
learning about people with intellectual disabili-
ties, about being good at football, about being
good friends, and so we have all leant so much.
Some of his friends have joined the team and I
have become a volunteer when I can at events
they have. His getting involved changed some-
thing for us all. (S-Par02)
The data also asserted the importance of the
Unified Sports programme in raising awareness of
the athlete’s talents. This was achieved through
media coverage of Unified competitions and cel-
ebration of achievements of the Unified team. One
young person recognised the direct impact of this
on his life:
Lots of people say they saw me on TV because
of winning the competition, and these are nice
people taking to me about being a good footballer.
This is because I am the goalie on the Unified
team and I am really a good goalie. (S-A01)
Participants strongly endorsed Unified Sports
role in advocacy for people with IDs in their com-
munities. One parent stated:
This project is a good way of informing people
and we should have more of them and we should
inform society about the existence of such a
project and the existence of people with disabili-
ties via television, radio programmes and so on.
(UK-P01)
This was supported by a coach who said:
To get more people involved we have to tell
people about what we do here, it is our obligation
to do this. (H-C02)
National and international competitions provide
opportunities for doing this.
Athletes are really proud when they come back
home with medals; we try to show them to
society either in the press or the local TV. Some
years ago at the beginning of the movement it
was hard but now the media are more interested
in what we do and achieve. (P-C03)
The outcomes can be personal as this athlete
described:
When I walk around town lots of different people
say hello to me, people that I did not know
before but now I do because I met them through
this team or have played against them in some
other competitions. (S-A03)
In summary, by challenging many of the stereo-
types associated with disability, Unified Sports
builds new perceptions of people labelled as intel-
lectually disabled but does this through personal
contacts at the team level which then ripple
through into the wider community. It may be a
slow process, but it is one that is the basis for
greater acceptance of people with IDs into local
communities.
Building alliances
Finally, the data from coaches, parents and commu-
nity informants identified the importance of build-
ing alliances as a prelude to greater social inclusion
of the players. Primarily, this was with mainstream
schools as they were the source of recruitment of
partners and coaches.
For the third year our Unified Sports programme
has a collaboration agreement with a mainstream
school. Not only do we recruit many of our part-
ners from this school they also let us use their 25
seat bus and their playing fields. (H-C02)
Alliances with players’ families were also
important in assisting the athletes and partners to
attend training and covering some of the expenses
involved in their participation. In some cases sib-
lings came as partners and for parents too, their
involvement went deeper as alliances were forged
among themselves.
We are a group of parents and now a group of
friends. Some of our children are partners and
some are athletes but we do not make a differ-
ence in that just like we tell our children there is
no difference. We try to help each other; we give
each other’s children a lift or help at an event.
Unified Sports is a big part of our lives too.
(S-P01)
We have set up a union of parents and children
in Special Olympics and it is very important
because we as parents can understand each other.
We can fight for what is right for our children
and we can support each other in our decisions.
(UK-P03)
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The teams had also forged links with various
community and sporting organisations in their local
communities. They offered ‘in-kind’ support to the
programme in terms of access to facilities and sup-
plying equipment, but also provided opportunities
for publicising Unified Sports. In some instances
local funding was also available through these
community alliances.
As both a member of the local community and
someone who is able to finance different pro-
grammes, organisation, institutions, I am able
to give finances to different projects with people
with intellectual disabilities. We give support to
programmes to this Unified project. I hope the
money they receive is even bigger next year
because lots of people can benefit from the
sports activities in this school. (S-CR01)
For a small number of athletes interviewed,
taking part in the Unified programme had directly
led to them securing employment with mainstream
businesses. These were achieved through introduc-
tions made on behalf of athletes by coaches and
through employers seeing young people play and
then deciding to offer them an opportunity in
employment. Athletes reported that they were
supported in their employment by the mentoring
of coaches from their Unified team.
I work in a restaurant in the village, this is a full
time job, it is what I wanted to achieve, so I work
outside the institution. This was with the help of
my coach that I got this job. I tried hard to get a
job and in the end I got a permanent job.
(G-P02)
Finally, as Unified Sports is part of the wider
Special Olympics movement, this gave access to
national and international Sports Federations as
well as Government Ministries, but this aspect was
mentioned by National Co-ordinators rather than
local informants.
Discussion
The study has a number of limitations. The infor-
mants were drawn solely from participants who
were actively involved with Unified Sports and did
not include those who may have dropped out. It is
possible too that the teams chosen and the inclu-
sion criteria used for their selection biased the
sample towards the best examples, rather than
typical examples, of the impact of Unified Sports.
However, the aim was not so much to assess the
overall impact of the programme but rather to gain
an insight into the processes inherent in Unified
Sports that were perceived to further the social
inclusion of the athletes within teams and commu-
nities. Identifying the pertinent processes is a step
towards increasing the efficiency of the Unified
Sports programme in achieving its objectives and
for guiding inclusion initiatives in other contexts
such as employment and education. In this respect
the study has a number of unique strengths: it
included participants from five different countries
and cultures; it covered two different sports and
triangulated the opinions across five different
groups of informants.
The four themes identified endorse the concepts
inherent in theories of social capital and in particu-
lar that of ‘bonding’: that is building networks
based on strong social ties between similar people
which maintains a strong group loyalty and rein-
forces specific identities (Coalter 2010). Such
bonding is especially crucial for athletes with IDs
whose poorer sporting competence and social skills,
coupled with the negative stereotypes associated
with the disability label or their attendance at
special schooling, often lead to their exclusion
from sports. Significantly, Unified Sports provides
a shared experience for both sets of players to
develop their sporting skills along with offering both
parties access to valued opportunities, such as travel
to competitions. This mutuality of benefit or reci-
procity is often absent in other attempts to promote
inclusion for people with ID based as they often are
around the altruism of the more able person as
helper or supporter to the disadvantaged group.
Rather as Coleman (1988) argued, the continuing
investment by others in bonded relationships
requires that they too receive a dividend.
A related issue in this respect is the deliberate
selection of persons to be partners, in this instance
non-disabled youth with an enthusiasm for sport
but lacking the skills to advance in more competi-
tive mainstream sports. This not only reduced the
discrepancies in terms of sporting competences but
also could be seen to introduce elements of peer
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R. McConkey et al. • Promoting social inclusion
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tutoring that have been shown to be efficacious in
other sport-based intervention programmes, par-
ticularly the perceived similarities between the tutor
and the learner (Payne et al. 2003).
Allied to these bonding processes but possibly
growing out of them, is a challenge that Unified
Sports makes to the negative perceptions that sur-
round ID in many countries ( World Health Organi-
sation 2007). As other studies have identified,
personal contact is a major factor in attitudinal
shifts across many cultures as non-disabled people
discover that the stigmatised group is more like
themselves than they are different (Yazbeck et al.
2004). In addition, the emphasis on developing
athletes’ talents in social as well as sporting skills
and celebrating their achievements through media
publicity further distances them from the usual ste-
reotypes of disabled persons that were reportedly
present in all the participating countries and which
are often reinforced in newspapers through the
negative images and words used when reporting on
people with disabilities (Brittain 2004). Locally
sourced, good news stories generated through
Unified Sports are possibly more likely to reshape a
community’s perceptions of disability than national
campaigns. Also the gains in terms of young peo-
ple’s personal development could enable them to
participate more fully in further education and
employment: an aspect that future research could
explore (Beyer & Robinson 2009).
The role of the coaches in facilitating team
bonding is especially noteworthy. Their role is much
broader than that of imparting sport skills (Hassan
et al. 2012). Unified Sports coaches have responsi-
bilities for recruitment, for furthering the personal
and social development of both sets of players, for
forging teamwork among them, for managing prac-
tical arrangements and facilitating social contacts
outside the playing field. As others have noted, the
social and personal development activities which
accompany the sport are probably more important
in realising the wider goals than are the sporting
activities per se (Orsmond et al. 2004; Spaaij 2009).
Parallels can be drawn with the contribution of
teachers to the success of pupils with special needs
within mainstream schools (Avramidis & Norwich
2002), but comparable facilitators of inclusion are
absent in other aspects of life such as employment
where the so-called ‘job-coach’ often has
responsibility solely for the person with disability
( Jahoda et al. 2008).
Woolcock & Narayan (2000) identify a further
form of social capital: namely ‘linking’ social capital
that connects bonded groups to people and
resources in the wider community thereby offering
access to larger social networks and the levering of
additional resources. There was only limited evi-
dence of such linking occurring within this study
and that was mostly with local schools, families and
community associations. Indeed, a surprising omis-
sion in the data obtained from informants was their
lack of linkages with mainstream sporting organisa-
tions, as at a local level, it would be conceivable
that some of the teams or players might progress
into mainstream competitions. As social capital
theorists have noted, overly strong bonds can have
negative consequences that may discourage contacts
with the wider communities and limit opportunities
(Forrest & Kearns 1999) or even act as a form
of social control and regulation (Spaaij 2009).
‘Linking’ social capital can help to balance the
more negative bonding effects. Future research
using survey-based methods could usefully explore
this issue further, especially with respect to the
social contacts athletes have within the wider
community beyond the sports field.
It is likely too that being linked into the infra-
structure of the Special Olympics organisation
nationally and internationally was another source of
social capital for Unified Sports to draw upon. At a
practical level, this provided opportunities for local
competitions based on shared rules and gave access
to funds for equipment as well as providing an
infrastructure for recruiting coaches and athletes
(Dowling et al. 2012). Nationally, Special Olympics
assisted with governmental and media contacts in
a way that locally created sports groups could not
draw upon (Seippel 2006) and the international
competitions were possible through the regional and
world games organised by Special Olympics biannu-
ally. The linking social capital emanating from
Unified Sports and Special Olympics, however,
should be mutually beneficial, in that the success of
United Sports will further stimulate change in the
host organisation (Hughes & McDonald 2008).
In sum, Unified Sports does provide a vehicle for
promoting the social inclusion of people with IDs
that is theoretically credible and with empirical
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R. McConkey et al. • Promoting social inclusion
© 2012 The Authors. Journal of Intellectual Disability Research © 2012 John Wiley & Sons Ltd, MENCAP & IASSID
evidence in support of it. Nonetheless, there are
four possible limitations that require further consid-
eration. First, the recruitment of coaches with
appropriate skills and attitudes is central to this
endeavour allied with the extent of training, super-
vision and support they receive (Spaaij 2009).
There is an urgent need for more empirical
research relating to the role of personnel as promot-
ers of social inclusion (McConkey & Collins 2010).
Second, the main beneficiaries thus far of Youth
Unified Sports are more able athletes whose sport-
ing skills are more on par with those of the partners
in the chosen sports. However, those with greater
needs arising from their disabilities are arguably at a
higher risk of social exclusion and hence might
benefit even more from participating in Unified
Sports. It is not immediately clear how this might
come about as the careful matching of the athletes
with partners is key to the programme’s success.
One approach may be to focus on the engagement
of partners with athletes who have higher needs in
the context of different and less demanding sports
that feature in traditional Special Olympics and to
focus more on non-competitive activities (Harada &
Siperstein 2009).
Third, as in mainstream sporting activities, atten-
tion should be given to the development of strategies
to encourage more female players to participate. In
part this is affected by the choice of sports, in that in
the countries where basketball was played by Unified
teams, a higher ratio of female players was found.
Hence, a wider range of sports is one strategy to
encourage the greater participation of women
(DePauw & Gavron 2005), although further research
could usefully elucidate the factors for the differen-
tial recruitment by gender into sports activities.
Fourth, participation in sporting organisations no
matter how excellent cannot eliminate the social
inequalities experienced by young people with IDs
in terms of family circumstances, financial pres-
sures, education and the local labour market that
were evident in this data. Ideally, a multi-sectoral
approach is needed to generate the necessary
political and economic capital to overcome these
inequalities and although these will be difficult to
achieve, the creation of social capital that is indi-
vidually tailored to local circumstances may be a
critical first step and one in which sport can claim
to be an important contributor.
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Implications of social capital for the inclusion of
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LESLEY CHENOWETH & DANIELA STEHLIK
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INT. ]. INCLUSIVE EDUCATION, ]AN-MAR 2004, VOL. 8, NO. }, 59-72
f.’:\ Taylor & Francis
~ T•yfor&FranclsGn:ttlp
Implications of social capital for the inclusion of
people with disabilities and families in community
life
LESLEY CHENOWETH and DANIEI.A STEHUK
(Onginally received 15 January Z003; accepted 7 August Z003)
This paper seeks to ascertain the usefulness of the theory of social capital as a framework for
-developing and sustaining the inclusion of people with disabilities and families in community
life. We discuss the theoretical elements of social capital and assess its relevance when
understanding both the experiences of people with disabilities and their families and the
possible implications for policy and programme efforts to promote inclusion. Preliminary
findings from two studies of the experiences and social networks of people with disabilities
and their families in communities in regional and rural Australia are presented. It is argued
that to date, people with disabilities and their families have largely been excluded from the
broader social capital debate and that social capital thinking has had minimal influence on
efforts to achieve the inclusion of people with disabilities into community life. It is further
argued that new paradigms of support are needed that build capacity and social capital
through working alongside individuals and families to influence not only outcomes for them,
but also for the communities on which they live. The local area coordination model as it has
developed in Australia since 1989 provides some instructive signposts for integrating
individual, family and community approaches. It is concluded that social capital theory can
make a contribution to inclusion theory and practice but we should use it with
circumspection.
Embracing inclusion
For several decades, the disability movement has been working towards what
has been variously termed community living, getting an ordinary life,
community participation and inclusion (Bradley et al. 1994, Oliver and
Barnes 1998). Presented as a major paradigm shift to community
membership, the essential and overarching aim has been to create places and
social spaces within our communities, where people with disabilities and
families are fully accepted and are afforded the same opportunities for
participation as non-disabled people. Fundamental to this is an accepted
and assumed knowledge about what inclusion is and what it means.
The most substantial debates and discussions of inclusion are located
within education where inclusion has been a major force within education
policy and research (e.g. Slee 2001, Swain and Cook 2001). Within
Lesley Chenoweth is at the School of Social Work & Applied Human Sciences, The University of
Queensland, Brisbane Q 4072, Australia; Dame/a Stehlik is at the Central Queensland University
Rockhampton, Q 4702, Australia. Correspondence should be addressed to Lesley Chenoweth: e-mail~
t.chenoweth@sociaLuq.edu.au
Inrernational JoUNial oflndusiw Education ISSN 1360-3116 print/ISSN 1464-5173 online 10 2004 Taylor & p · Ltd
http:flwww.tandf.eo.uk/journals ranc•s
DOl: 10.1080/1360311032000139467
60 LESLEY CHENOWETH AND DANIEUI STEHUK
education literature, there are numerous definitions of inclusive education
and how it should be achieved. Several themes can be distilled from this
literature that have relevance for the broader project of community
inclusion.
First, there is an important differentiation of ‘inclusion’ from its
predecessor ‘integration’ (Oliver 1996, Northway 2001). While much of this
could be argued as mere semantics, there is a view that the integration/
segregation binary is more technical and involves strategies whereby
disabled people are made to fit into the mainstream. The ‘part’ (e.g. a child
with a disability) requires some action to bring it into the ‘whole’ overcome
segregation. Inclusion, on the other hand, is positioned from a starting point
of the whole having many parts but each none the less is part of that whole.
Inclusion does not require conformity or assimilation but rather assumes a
society which embraces diversity.
Second, inclusion is seen as a process rather than an outcome and is
founded on principles and values. Uditsky (1993) proposes that there is a
progression from integration to inclusion and the process of inclusion rests
upon fundamental principles of membership, friendship, relationships and
supports.
Notions of connections, relationships, valued roles, contributing and
social networks are all part of the inclusion discourse. Such qualities, while
inherently admirable and almost universally espoused, have proven to be
more difficult to attain and sustain in reality across the chasms of different
paradigms and values and across long periods of time. For example, in the
two decades since de-institutionalization policies supported the closure of
institutions and the establishment of community based care models, the full
integration of people with disabilities remains an unrealized ideal.
It has been argued that the implementation of community inclusion
needs a multilayered approach (Chenoweth 1997), one that embraces
supporting individuals and families through services and developing
communities’ capacities to welcome and include people with disabilities.
Northway (1997) points out that inclusion will require a much broader
policy response; one which includes both disability specific as well as general
s~cial policy strategies. It is acknowledged, however, that ?chie’?ng inc~usio!l
will be problematic because it challenges the very way m which society IS
structured and organized (Oliver 1996) and as it grows in popularity, it will
become more ambiguous (Uditsky 1993).
Clapton (1999) suggests that inclusion itself is a flawed concept that
implies, by its very binary nature, that when we have inclusion we also have
exclusion. Clap ton argues that we need to explore notions of integrality if we
are to have people with disabilities truly members of ordinary communities
and groups. This concept of integrality can be considered alongside current
powerful debates about social capital building as a framework for building
community capacity and that while social capital has much to offer, it
nevertheless suffers from its lack of consciousness about the inclusion/
exclusion dynamic.
In summary, therefore, inclusion has well-articulated principles and
values and represents a policy agenda based on the social model of disability
rather than the individual model. However, when we embark on the path of
SOCIAL CAPITAL AND INCLUSION 61
practice-of what do we do and how do we do it-we are confronted with
a yawning chasm between principles, policies, programme and lived
experience for the person with a disability and often their family. There is a
need for a better theory to inform practices of inclusion in community life.
Such a theory needs to span the spaces between the individual, the family
and society.
Social capital
In recent years, the concept of social capital from the work of Bourdieu
(1986), Coleman (1988) and Putnam (1993, 2000) has been firmly placed
on global and local public agendas. Social capital has been described
variously as the raw material of society created from the ‘myriad of
everyday interactions between people’ (Bullen and Onyx 1999: 3) and as
the social fabric or glue that makes us human (Putnam 1993, Cox 1995).
At a more practical level, it refers to the networks and norms that allow
people to work together to resolve problems and achieve common goals
(Stone 2000).
Social capital has gained currency in research and social policy for more
than a decade (Wall et al. 1998, Healy and Hampshire 2002). It has been
enthusiastically commandeered by governments seeking to fmd ways to
develop stronger communities which will have the capacity and leadership to
find local solutions to local problems. The overarching aim is to develop
such community capacity so that the resultant stronger communities can
support weaker individuals and families and that strong families will support
weaker communities (Stone 2000).
Social capital can be understood as one of the different forms of capital
(Bourdieu 1986, Coleman 1988):
• Economic capital including financial resources such as income,
money or loans.
• Physical capital including buildings, housing, roads and machines.
• Human capital that refers to the knowledge and skills acquired by an
individual.
• Cultural capital that refers to the knowledge, skills, forms of
expression that are culturally valued and distinguish some groups
from others.
However, social capital has undergone several metamorphoses since its
inception over 20 years ago. It was first introduced by Coleman (1988) to
describe the networks, ties and relationships established between individuals
in the context of wider social systems. His work was directed at bringing
together the individualist and sociological traditions and he argued that
social capital was a concept by which these two traditions could be
synthesized (Midgely and Uvermore 1998).
Bourdieu (1986) used the term to refer to the advantages and
opportunities that came to people through membership of various commu-
nities and groups. Bourdieu saw social capital as a resource that accrued to
an individual and later defined it as:
62 LESLEY CHI!NOWI!TH AND DANII!LA STI!HUK
the sum of all resources, actual or virtual, that accrue to an individual or a group by
virtue of possessing a durable network of more or less institutionalised relationships of
mutual acquaintance and recognition. (Bourdieu and Wacquant 1992)
The more recent popularization of social capital is largely due to
Putnam’s (1993) work in Northern Italian communities in the early
1990s. Putnam argued that communities with high levels of civic engage-
ment also recorded higher levels of economic growth. Later, in his
popular best seller Bowling Alone (2000), Putnam further argued that
social capital in America was declining as people no longer joined
voluntary associations. As a result, Putnam’s work has shifted the focus of
social capital from a characteristic of the individual to something that is
the property of groups or even nations (Portes and Landolt 1996). It is
this model of social capital that has been taken up by governments of all
political persuasions. The approach enabled a synthesis with the self-help,
conservative economic approach favoured in the past decade, as well as
linking to the larger ideological stand of ‘enabling people with disabilities
to live in their own homes, cared for by their own families’.
While there is a growing literature on social capital and its application
to various fields of theory and practice, several themes have been
identified (Bullen and Onyx 1999) for the general population. These form
the key elements of social capital and are briefly discussed below, with
examples of how these elements should operate for people with dis-
abilities and their families.
Participation
One of the key concepts in social capital is the participation in vario~s
networks through family and friends, neighbourhoods and work. Social
capital is generated through these networks and associations. This partici-
patory approach would suggest that people with disabilities and their
families become involved in naturally occurring networks within their own
communities. In fact, as we discuss further below, our research has found
that isolation from such networks is more often than not the powerful
experience of vulnerable people.
Reciprocity
Bullen and Onyx (1999) suggest that social capital is about the exchange
~f resources or supports or services between people. It is not based on the
‘Immediate return’ requirement that is inherent in the business contract
but rather on the notion that people provide a support to others based on
a general expectation that someone will return the favour at some time in
the future. Again, our recent research has found that such reciprocity is
less likely when the person has a disability, or the family is caring for a
person with a disability.
SOCIAL CAPITAL AND INCLUSION 63
Trust
All discussions of social capital refer to trust-that people will act in
mutually supportive ways and do no harm to each other. The principle of
reciprocity rests on this basic requirement of trust. For many of the people
that we have met in our research, their difference tends to alienate people.
Their ‘naturally occurring networks’ based on trust are largely limited to
their immediate family members or to paid professionals.
Social norms
Social capital is said to be related to the upholding of social norms. This is
one of the most powerful determinants of difference. Social norms within
society established what it is to be ‘normal’ and to be a member of the ‘inner
core’ of that society. To have a disability, to be mentally ill or infirm, means
that one of the most powerful norms is challenged. It becomes extra-
ordinarily difficult for an individual to overcome such norms and establish
their capacity within a community.
Common resources
Bullen and Onyx (1999) suggest that all the factors above create
communities with a strong sense of and commitment to shared ownership of
resources. These are pooled resources owned by the community separate
individuals. Such resources are ‘tapped into’ by competent individuals and
community leadership enables an equitable redistribution of such resources.
However, such resources are reliant on some form of ‘giving back’. It
becomes difficult continually to draw on them, without being able to
replenish them.
Proactivity
Social capital constructs the citizen as a creator, rather than a consumer of
resources. This makes establishes its fundamental difference to, for example,
the human services where people are in receipt of services. Social capital is
predicated on having community members who are proactive, engaged and
active participants solving not only current but potential problems. Such
proactivity is largely denied to people with disabilities and their families.
Tolerance of diversity
This important and fundamental aspect is somewhat contested. Critics
argue that social capital promotes inclusion of only those who ‘fit in’.
Putnam (2000) argues that there is a connection between high social capital
and tolerance of diversity and that America is a more tolerant society now
64 LESLEY CHENOWETH AND DI\NIELA STEHUK
than it was in the 1950s. Such a broad statement, which tends to elide the
growth of homelessness, of poverty and of class and race differential in all
Western industrialized nations, demonstrates the need to more carefully
research the impact of capitalism, and to deconstruct some of the discourses
surrounding social capital.
Bonding, bridging and linking social capital
While largely concerned with the relationship between social capital and
economic development, Woolcock and Narayan (2000) outline a summary
of social capital that we believe is useful for practice. They outline three
forms of social capital: bonding, bridging and linking. First, bonding
social capital refers to those horizontal ties within a community such as
relationships between families, friends and individuals. Such ties give
people a strong sense of identity, purpose, common understanding and
mutual support. Second, bridging social capital refers to those links which
are made across socio-economic, religious, cultural or gender social
divides such as formal and informal links beyond one’s personal networks
to other formal and informal resources. Finally, linking social capital
comes from alliances between individuals and communities with persons
in positions of power such as politicians or the chief executive officers of
business corporations or community organizations. Through connections
with such individuals, people can have direct access to others with the
power to make decisions.
We would argue that to ensure robust and sustainable communities, it
would appear that all three forms of social capital are needed, and for those
individuals who are the most vulnerable in our communities, policies and
practice need to be founded on the fundamental principle that not every
individual can simply ‘switch onto’ social capital building. The three
forms-bonding, bridging and linking-are all predicated on action b_Y
others. In other words, social capital does not emerge fully formed, It
actually requires action by others to enable it to be accessed by all.
Critiques of social capital
There are a number of legitimate criticisms of social capital. First, social
capital has been revamped from its original meaning as intended by
Coleman to link individuals with social systems and Bourdieu to explain
how some people got access to privileged and powerful positions because of
their social connections (Portes and Landolt 1996). Both Coleman and
Bourdieu envisaged social capital as a resource of the individual-although
neither Coleman nor Bourdieu considered those most vulnerable in society.
Putnam (1993) turned social capital into a resource that is held by groups
for the benefit of society as a whole. In short, social capital was proposed as
an answer to social problems. It has become a commodity that communities
need to have. As stated above, it is this transformed ‘panacea’ version that so
appeals to governments and those who develop social policy.
SOCIAL CAPITAL AND INCLUSION 65
Much of the discussion on social capital also does not adequately address
the ‘dark side’ of some social networks. Not all social groups are sustaining in
the long term, e.g. members of gangs engaged in criminal activity may be
strong on bonding ties but not give any credence to the need for bridging ties
into other social networks. Some rural communities are similarly strongly
bonding but this can be a stifling experience for some members of that
community or impenetrable for newcomers trying to ‘fit in’.
The very interactions that form the substance of social capital are also
increasingly harder to sustain in a society where the very standards of
success (and therefore being included) are rising and where there is an
increasing expectation that we should all be able to look after ourselves. The
ethos of ‘looking after number one’ or the self-help model discussed above,
produces a more inward looking populous (Everingham 2001) rather than
one prepared to support each other.
Local area coordination
This section outlines the research conducted, its methodology and purpose.
Local Area Coordination is a new model of service delivery, established in
Western Australia in the early 1990s, and most recently in Queensland and
New South Wales. This study, as part of two larger projects, involved people
with disabilities and families who were in contact with Local Area
Coordination services in Queensland and New South Wales.
In depth semistructured interviews with individuals with disabilities or a
family member were carried out in people’s homes in five regional and rural
communities in the State of Queensland, Australia, and five regional and
rural and one metropolitan community in New South Wales. All interviews
were conducted between 1999 and 2002. The majority of participants lived
in provincial centres, small towns or on farms or properties. A small number
(six) lived in metropolitan suburban settings.
Eighty-six interviews were completed and covered the experiences of
living in the community and the range of family friends and formal
relationships. People were also asked what they thought their community
was like in terms of its attitudes to people with disabilities generally. In
addition, 71 of those interviewed also completed social network maps
(Tracy and Whittaker 1990) as part of the interview. The maps recorded the
number and type of social contacts and relationships and the degree of
closeness to the person with a disability. In the case of children or those
unable to complete it for themselves, a close family member completed the
map on their behalf. The maps recorded relationships with close and
extended family, friends, acquaintances and the services and agencies
involved in the person’s life. These included generic services such as health
care, transport, education as well as disability specific services such as
accommodation support, respite or early intervention and therapy. Inter-
views were transcribed, coded and analysed using the computer software
package, Ethnograph. Themes were generated from these data and
recorded. Detailed findings and generalized analysis from the social network
maps are reported elsewhere and are not presented here.
66 l.ESl.EY CHENOWBTH AND DANIF.LA STEHUK
Implications for people with disabilities and their families
Several issues arise when considering the ways in which social capital theory
and ideas might be applied to the experiences of people with disabilities and
families. We identified five themes from our findings relevant to social
capital.
Few resources to invest in social capital building
First, social capital would appear to be predicated on people having
sufficient economic and emotional resources to allow a person to participate
in networks. People who do not have secure economic and family situations
or who are facing a crisis of some sort are often internally focussed on the
task of survival with no ‘surplus’ resources to contribute to the building of
social capital. Paradoxically, these individuals are clearly those who would
benefit from being a member of a community with high social capital. The
individuals and families in our study were often fully occupied with tasks
associated with living with a disability. For example, people were fighting for
in-home support funding, or negotiating for their child to attend the local
school or having to attend numerous health appointments-sometimes
travelling long distances to do so. Some parents were also occupied in
hands-on carer roles bathing, feeding and attending to the daily needs of
their child or family member.
For some people, involvement with internally focussed tasks of living
and survival were episodic, for example in cases where the person has a
mental illness or multiple sclerosis. For others, resources were fully utilized
at various critical periods or transitional life stages as in the case of one
family who found they were fully occupied with finding a school that would
accept their child. Another example was that of a family whose child with
spina bifida had to undergo renal surgery which required one parent to stay
at the hospital many hundreds of kilometres away. However, for many
families with a member who has a disability, their emotional and financial
resources were stretched most of the time. As one mother of three children,
one of whom had severe physical and intellectual disabilities, put it:
I would dearly love to be involved in the soccer club where my other son plays. He
misses out a lot you know. Just to go to see him practice one afternoon a week would
mean a lot. But who can I get to take care ofJ?There’s no-one who can do that. I can’t
just leave him. I am 80 tired just doing all that physical work too. .
Social isolation
There is significant evidence to show that many individuals with disability
and their families are socially isolated (Gething 1997, Kitchin 1998, Kerr
and Mclntosh 1999).
Our study also found that people were socially isolated from both family
~n~ o~er social contacts. Given the nature of this sample with many people
hvmg m regional and rural areas, some of this isolation may be explained
SOCIAL CAPITAL AND INCLUSION 67
through geographical factors. However, many people expressed the view
that they did not feel part of or even welcomed in the local community. Our
research found that this was true for those families who had lived in the area
for a long time, as it was for those who had come to the community more
recently. Poignantly, one family, where the adult son was living with an
acquired brain injury, and whose mother and father had been born in the
town, were experiencing powerful rejection from a community that
previously, they had thought of as inclusive and accepting.
Many people with disabilities and their families have a greatly reduced
capacity to form networks. If reciprocity is a central tenet of social capital
then the capacity of some families to contribute will diminish as they focus
on internal tasks of everyday living, supporting their family member with
physical and daily living needs As one parent described: ‘I was just so tired.
I was just burnt out completely with looking after her’. This means that they
are therefore not able to build those networks that may be able to provide
some support when needed. This sets up a cycle of rejection where the
demands of disability reduce the capacity to invest in social networks and
therefore leads to social isolation. Being socially isolated means there is very
limited access to external supports consequently, individuals increasingly
rely on internal resources (from within their own family) to meet those
needs.
Reality of rejection
While communities may be high in social capital, they may also exclude
people with disabilities as different from other community members.
Sometimes this exclusion takes a violent form. Our research highlighted the
reality of rejection of many people who spoke of their experiences of
bullying, exclusion and violence. One family moved their child with a
disability from the local school because he was repeatedly bullied by other
children. The school’s response was to send him home to avoid further
buJlying thereby excluding him from school. Another woman with physical
disabilities who had her own small office services business found she could
not ‘break into’ the business community because she was not known to the
business leaders and her efforts to make contact with them had failed.
Another man with a psychiatric illness and an intellectual disability and
living in a small country town was beaten up and robbed of cigarettes twice
in his local park. He was admitted to hospital for surgery to his shoulder,
which is now seriously impaired. Perhaps the most concerning aspect of this
rejection is the potential for violence against the person with a disability that
is so often present.
Invisible volumary contributions
One of the key elements of social capital is the voluntary contribution to
community and civil society. Our research over many years has underlined
the important fact that many people with disabilities and parents of people
68 LESLEY CHENOWBTH AND DANIELA STEHUK
with disabilities do make significant voluntary contributions to our society
on a continuing and regular basis. This occurs on two levels. First, people
contribute more formally as members of groups or committees such as
boards of disability service organizations, advocacy groups, advisory
committees to government or lobby groups for better services. Many people
reported that they had been a broad member of a local service for several
years, or had participated in other committees for government. Second,
parents and family members also contribute less formally, though sub-
stantially in terms of efforts, through the unpaid caring work they perform
daily and for many years. For example, a mother of a man of 35 years of age
with Down’s syndrome, explained how she had never had any support from
any service or agency after she was asked to keep her son at home from
school after 3 weeks in the first grade nearly 30 years ago. Over those years,
she has cared for him, given him an education (albeit rudimentary) and
prepared him for adult life in the small town where they live without ever
having any respite or formal service assistance.
We argue that much of this voluntary contribution is invisible to the
wider community yet clearly represents significant contributions made by
people with disabilities and families to their communities. Who sees this
caring contribution or notices the impact that it has for the wider
community? Much of it is undertaken ‘behind closed doors’, and the energy
it requires leaves little capacity for other, more public, activity. There is
another question underpinning this phenomenon. Are some voluntary
contributions are more valued than others and therefore seen to more
actively contribute to social capital building? Hampshire and Healy (2000),
in a study of social capital involving a non-profit organization, argue that
social capital contributions of non-profits are undervalued. We argue that
this is even more pronounced where the contribution is at an individual
level.
We would suggest that our research shows that perhaps the issue of
reciprocity requires that the contribution needs to have immediate and
recognizable benefits to the contributor and in the case of vulnerable people,
such immediate reciprocity becomes difficult to maintain.
Bonding social capital of disability groups
Our findings suggest that some people with disabilities and families do have
links with other individuals and families and that the resultant networks are
supportive. This was also reported by Clear (1999) in his study of
experiences of families with a child with a disability. He found that families
were more supportive of and connected to other families with children with
disabilities than to others in the general community. Our research involved
a number of parents who were members of State-wide parent advocacy
organizations or who were connected to other parents through local
lobbying or self-help efforts. We also interviewed some people with
disabilities who similarly chose to form informal groups or friendships, or
who were members of self-help groups. People reported that these social
contacts were ‘easier’ because there was less risk of rejection and that the
SOCIAL CAPITAL AND INCLUSION 69
other person ‘knew what it was like’. The energy associated with dealing
with potential rejection by ‘normal’ groups could then be used more
effectively.
Such networks appear to be high on bonding social capital but weak on
bridging social capital. For inclusion to happen it is apparent that all types
of social capital are necessary.
Bonding social capital was valued by the people we met who reported
that they had some social contacts in an accepting environment. However,
they did not feel they could call on such people for assistance or support
because they were acutely aware of the caring efforts that they were engaged
in. In needs to be pointed out that true inclusion is about the participation
in ordinary and general social networks not segregated ones. We are certainly
not advocating a separation model here-quite the contrary.
Elsewhere, we have written of the important role of the human service
practitioner in building the bonding social capital capacity of individuals
and their families (Chenoweth and Stehlik 2001). Note that here there is
some early evidence that governments, more recently, have become aware
of the importance to support social capital building while taking note of
the need for inclusion. The Local Area Coordination model was estab-
lished, in part, to deal with this paradox-time will tell whether it will
achieve this goal.
Some conclusions
In the integration of inclusion with social capital building, our research has
identified some obvious fragility in the current established model. At
present, social capital remains unrealized for vulnerable people who are
different. We believe there are potential benefits in working towards
establishing an inclusive model of social capital building. However, such a
model would need to take into account a number of concerns and issues.
First, social capital frameworks may have something to offer the
inclusion movement but we should be cautious as to its potential. Over the
past 30 years, the disability movement has enthusiastically embraced many
‘fads’ that have become viewed as quick fixes to eradicate exclusion or
rejection. Social capital may be in danger of being regarded as just another
trend that will not deliver enduring positive outcomes for people with
disabilities and their families.
Second, that the disability movement has much to offer to social capital
theory and practice. People with disability and families are part of a large
number of people viewed as different or Other from the mainstream of
society. Much of social capital scholarship has hitherto paid little attention
to the relationship between difference and social capital and the question of
whether or not one can access or build social capital as long as one is a
member of the in-group and not Other. The experiences of people with
disability may shed light on these issues. Additionally, the voluntary
contributions of people with disabilities and families that are unrecognized
or undervalued also pose questions about the comprehensiveness of current
social capital theorizing.
70 l.ESLEY CHENOWETH AND DANIELA STEHUK
Third, social capital should not be considered as a panacea for social
problems across all communities. We believe that there is a danger in
promoting social capital per se as a policy and programmes solution to social
problems. Social capital is useful, however, in developing a shared
understanding of complex processes within groups, organizations and
communities, and can be an important tool for practice that seeks to
promote community engagement (Hampshire and Healy 2000).
Importantly, the tolerance of diversity needs to be supported in any
social capital framework. We suggest that any theoretical framework
addressing inclusion must address, at the most fundamental level, the
experiences of people with disabilities and families. Social capital has
potential for informing policy and practice on community building, social
networks and community participation: all areas integral to inclusion.
To make social capital frameworks more relevant for the disability sector
further work is needed on diversity and difference. Creating sustainable
communities demands the acceptance of diversity and difference. A
community cannot be sustainable unless it incorporates all of its citizens.
There is also an inherent contradiction in social capital and values of
individualism and self-responsibility. This raises a question about whether a
self-help model can actually build community.
Our practice on behalf of people with disabilities and their families
requires us to consider both individual and community strategies. We need
to think holistically, and as a concept, social capital can establish an
integrated whole. The bonding, bridging and linking social capital approa-
ches need to be integrated for inclusion to work. We should focus on all three
aspects, not just choose the easy option.
This is particularly relevant for those involved in inclusive education.
The local school is a rich site for the development of social networks for
children with disabilities and their families, i.e. a source of social capital.
There is also potential for social capital generation through the inclusion of
adults with disabilities in other educational processes such as technical
colleges, adult education courses and community-based life-long learning
programmes. We acknowledge that it requires more than mere presence in
such community situations to foster the development of real relationships
for people with disabilities and that the building of bonds, bridges and links
requires additional supports. Facilitating such supports is often a challenge
for teachers, parents, children and community members and frameworks
which will assist us to develop further our understanding of the complexities
of inclusion and how to support it are much needed. Social capital may
provide such an integrative framework.
Social capital has received little attention within the disability movement
just as social capital thinking has not incorporated the perspectives and
experiences of people with disabilities and their families. We believe there is
potential in social capital theory and practice especially in its application to
~ommunity building and family life. Social capital has alread~ been ~se~ to
mform policy and programmes in many areas and arenas and 1ts apphcauon
is expanding rapidly. It has appeal in that it is a concept that can be quickly
grasped and understood by practitioners, policy-makers, people with
disabilities, families and ordinary members of the community. Social capital
SOCIAL CAPITAL AND INCLUSION 71
may provide one way of integrating the individual, family and community
levels of intervention that is essential if inclusion is to become a reality.
This provides an exciting opportunity for those involved in inclusion
efforts to develop knowledge about how social capital works and how we can
achieve positive outcomes for people with disabilities, their families and the
communities in which they live.
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Social capital, social inclusion and services for
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Disability & Society, Vol. 19, No. 3, May 2004
Social capital, social inclusion and
services for people with learning
disabilities
Peter Batesa* and Fabian A. Davisb
aNational Development Team, Ipswich, UK; bBromley Mental Health Services, Oxleas
NHS Trust, Chislehurst, Kent, UK
Both social capital and social inclusion have emerged as significant concepts for human services
in the last decade and yet their inter-relationship remains largely unexplored. This article argues
that, whilst they are similar in their vision for a healthy society, they adopt sufficiently different
perspectives to stimulate and challenge each other. This can be well illustrated by reference to
services for people with a learning disability. Commissioners and providers of learning disability
services are encouraged through this article to harness both concepts in order to assist in the
process of modernizing services and increasing life opportunities for the people they support. It
is argued that it is not possible to understand the full consequences of adopting either theoretical
position without an adequate understanding of the other. Examples are given of the implications
of this for advocacy services, day opportunities, rural communities, transition and staff training.
Introduction
The concept of social capital (Putnam, 2000) has become popular just as the
English White Paper ‘Valuing People’ (Department of Health, 2001b) has required
learning disability services to work towards social inclusion. This article points a
spotlight on useful insights in both social capital and social inclusion approaches that
may help in the development of learning disability services, and notes some of the
hazards of an unthinking adoption of either of these frameworks in isolation from the
other.
Social capital: investment in human society
Mrs Rose has decided to re-open the old school in our village as a community centre.
She sent round a questionnaire asking each household how they could contribute their
time and skills. She had 94 responses—more than the number of households in the
village. As she says, ‘I don’t know why I’m doing this. I’m nearly 80 and I won’t live
to see this place open. But there’s such a lot of talent in this community and
somebody’s got to get people together.’ I always had the capacity to get involved, but
I’m only using my capacity because Mrs Rose asked. (Ritchie, 2001)
Robert Putnam (2000) calls buildings, plant and equipment physical capital; people,
*Corresponding author: National Development Team, Unit 10, Hill View Business Park, Old
Ipswich Road, Claydon, Ipswich IP6 0AJ, UK. Email: pbates@ndt.org.uk
ISSN 0968-7599 (print)/ISSN 1360-0508 (online)/04/030195-13
2004 Taylor & Francis Ltd
DOI: 10.1080/0968759042000204202
196 P. Bates & F. A. Davis
skills, knowledge and experience human capital; and social networks and norms of
trust and reciprocity social capital. This distinction was taken up Prime Minister
Tony Blair when he said that ‘in the future, we need to invest in social capital as
surely as we invest in skills and buildings’ (Corrigan & Miller, 1999).
Putnam (2000) goes on to observe that the term ‘social capital’ has been coined
at least six times during the twentieth century, while Schuller (2000) has suggested
that its roots lie in a variety of intellectual traditions, including Alexis de Tocqueville
(1835) on voluntary associations, Elizabeth Bott (1957) on social networks, John
Dewey (1929) on shared concerns, Jurgen Habermas (1984) on trust, Amitai
Etzioni (1996) on communitarianism and Albert Bandura (1977) on self-efficacy.
Despite this rich intellectual heritage, the notion of social capital remains fluid and
lacks a precise definition, so, for example, Grootaert (2001) offers a list of 50
indicators that have been used in empirical studies, while the Social Action Research
Project (Health Development Agency, 1999) baseline study used the following six
components as a working definition:
• Participation in the local community: do you think of yourself as part of the local
area? Are you an active member of a local group? Have you participated in
voluntary or religious activities?
• Reciprocity: have you done or received a favour from someone living nearby? Do
local people look after each other? Who would you turn to for advice or to share
some good news?
• Feelings of trust and safety: in your own home or going out at night. Have you
been a victim of crime? Can people round here be trusted?
• Social connections: have you chatted with family, friends or neighbours recently?
Do you have close friends round here? How many people did you talk to
yesterday? Do you go outside this area to visit your friends?
• Citizen power: have you formally complained about a local service? Have you
joined a committee to fight for a local cause?
• Community perception: do you pick up other people’s rubbish? Do you enjoy
living here? Are there enough community facilities and public transport?
Social inclusion
Social inclusion is another fluid term with a variety of meanings (Bates, 2002a). For
the purposes of this article, social inclusion means ensuring that people with learning
disabilities have full and fair access to activities, social roles and relationships directly
alongside non-disabled citizens. Over the past 30 years an informal network of
writers (Wolfensberger, 1972; O’Brien, 1987; Falvey et al., 1994; Rusch & Hughes,
1989) have shown how support can be provided so that people with disabilities can
be employed rather than attend a sheltered workshop, live in their own home rather
than in a hostel, and participate in friendships and community life with a diverse
array of citizens, rather than conducting their whole lives within segregated disability
services.
Since New Labour established the Social Exclusion Unit in 1997 (Social
Social capital, social inclusion and services 197
Exclusion Unit, 1998), the notion of social exclusion has also been used to embrace
poverty, unemployment and threats to community safety, along with poor access to
healthcare and decent housing.
Recent policy convergence
We would argue that social capital is an idea whose time has come. It has been
enthusiastically adopted by the World Bank, American, European and UK
governments, and has permeated the areas of health, education, community care,
community regeneration and employment (Mitchell & Harrison, 2001).
Increasing social capital is expected to generate improvements in all the above
areas because it is argued that increased civic participation will invigorate govern-
ment, information flowing through informal networks can enhance job prospects,
supportive friendships buffer against distress and illness, reciprocal relationships
create a culture where learning and contribution flourishes, and heightened trust
leads to a reduction in crime. As such, social capital theory should be of interest to
Local Strategic Partnerships, Learning Disability Partnership Boards, Health
Improvement Programmes, Community Safety Partnerships, and a host of other
initiatives that directly or indirectly impact the lives of people with learning
disabilities.
The 2001 White Paper ‘Valuing People’ (Department of Health, 2001b) intro-
duces person-centred planning (O’Brien, 1987) as a driver to promote service
change. The White Paper assumes that the majority of people with a learning
disability will want to move towards an independent life in the community, leading
to the demise of segregated services. A major part of this change is to be day service
modernization by 2006 and the promotion of social inclusion will be an essential
component of this change (Love et al., 2002). As a result, many services are looking
towards social inclusion advocates and social ‘capitalists’ for a comprehensive and
detailed conceptual framework within which to plan and manage such major change.
Thus, developments in learning disability provision, social inclusion and social
capital all meet in the growing policy emphasis upon citizenship, so that ‘the world
disabled people will occupy will extend way beyond their specialist services’
(Simons, 1998).
Contrasting social inclusion and social capital
The introduction above has hinted at some significant challenges to learning
disability services that emerge from singular analyses of the implications of adopting
either a social capital or social inclusion perspective. The Health Development
Agency’s framework for social capital is now used to look at some of these areas and
to explore implications where the two theories need to be considered in tandem.
Real examples from services for people with learning disabilities are used to illustrate
the synergy or divergences between the two theoretical discourses.
198 P. Bates & F. A. Davis
Participation in the local community
Those people who have been deliberately segregated in prisons, long-stay hospitals
and other institutions are rarely mentioned in social capital thinking, while social
inclusion advocates strongly assert that society should find ways of bringing this
group back home (Mansell, 1993). A brief glance at policy documents such as
Valuing People would suggest that services should promote inclusion, but despite
this, current service arrangements often segregate learning disabled people, particu-
larly those with the least natural ability to articulate their interests.
However, bringing people back home demands more than relocating their beds—
relationships have to change as well. In both social capital and inclusion thinking,
service users are recognized as citizens, and the traditional focus on the relationship
between worker and service user is replaced by an emphasis upon the reciprocal
relationship between citizen and community:
Two women with learning disabilities wanted to take up yoga. No local groups existed,
so the worker found a tutor and a community hall, and put adverts around the
neighbourhood. A mixed group of citizens joined and everyone welcomed each
other—including the people with learning disabilities. Nine years later the group is still
running—long after the worker moved to another job. (Christine Burke, personal
communication)
This paradigm shift is also enacted as people are supported to take up open
employment and to participate in community Timebanks (Reed & Boyle, 2002) and
local exchange trading schemes (Seyfang, 2001). Advocates of social inclusion have
rightly highlighted the importance of waged employment as a route to income, status
and relationships, while social capitalists point the spotlight on informal roles and
relationships. In addition to the opportunity to earn a wage, people with learning
disabilities may participate in the community via education, volunteering or leisure
pursuits.
Mainstream learning providers have a renewed focus upon developing citizens’
social and civic skills, and this may lead to a renaissance of non-vocational training
to counter the recent emphasis upon developing only those skills that directly
contribute to the economy. Such a shift in emphasis would have a disproportionately
beneficial effect upon people with learning disabilities.
Similarly, a social capital perspective highlights the benefits of volunteering. For
many years, services have arranged a few opportunities for people with learning
disabilities to become volunteers in the community. Each placement must find a
path between employment (volunteering as work simulation in order to attain
vocational experience and skills) and community participation (volunteering as a
means to harness altruistic endeavour and build affiliation and membership). Social
capitalists helpfully wrest volunteering back from a single-minded attempt to use
volunteering solely as work preparation and remind us that volunteering builds
community, trust and reciprocity. Care is needed to ensure that volunteering
opportunities are safe, rewarding, and respectful and contribute to the formation of
social capital (Bates, 2002b):
The VALUES project based at Leicester Volunteer Centre supports people with
Social capital, social inclusion and services 199
learning disabilities to contribute their time and skills to the local community. Individ-
uals make a difference in the museum, charity shops, environmental projects, and lunch
clubs—all sorts of places.
Reciprocity
The way in which people with learning disabilities are perceived by others can be
even more important to their capacity to contribute to the development of social
capital and their own social inclusion than their disability. For example, if members
of the public label people with learning disabilities as fraudulent, attention seeking,
disinterested in civic affairs or unable to make a positive contribution to the
community, this will limit their potential for reciprocal relationships with non-
disabled community members. While it can be hard to identify the unique contribu-
tion that a particular person enjoys making and for which they will be genuinely
appreciated, without opportunity this may never be discovered at all.
The two theoretical positions bring complimentary insights to the topic of re-
ciprocity. Putnam (2000) makes a distinction between bonding and bridging rela-
tionships in which bonding relationships form between people who share a common
bond, while bridging relationships bring diverse people together.
Respectful bonding relationships between people with learning disabilities are
important, of course, but social inclusion theorists envisage a society in which
bridging relationships span all the structural divisions in society (Amado, 1993). An
included life with an ordinary home, job and leisure pursuits (rather than segregated
in residential units, day centres and ‘group trips’) is a prerequisite for building these
socially inclusive bridging relationships. Social inclusion theorists argue that society
should nurture relationships between people with a learning difficulty and those
without (e.g. Amado, 1993) and assert that everyone can feel at home in mainstream
society, while social capital theorists do not make this explicit. Any service would be
limited by adopting a social capital analysis alone as this could lead to a diminished
vision that confined bonding relationships to those between peers in a day centre
and bridging relationships to those that formed between centres, such as at the
Special Olympics.
Bridging social capital provides what Granovetter (1973) referred to as weak
ties—a valuable source of information and contacts that can help people with
everything from job-finding to problem solving. Similarly, while Putnam rather
derides ‘mail-order’ membership, belonging to an association that collects subscrip-
tions and provides publicity can contribute to a sense of identity and provide
material for conversation with others. Social capital reminds us of the importance of
nurturing these connections with ‘insignificant others’ alongside more intimate
connections:
Building sustainable relationships
Seventeen people with learning disabilities have fenced 144 gardens on the Oakwood
Estate in Bridgend. As well as forming a tight-knit team, they have gained work
experience and qualifications in amenity horticulture by linking with the local college.
One group member said ‘my self esteem has improved, I feel physically fitter and I feel
200 P. Bates & F. A. Davis
being part of the group is helpful for character building.’ Using locally grown renewable
timber, the fencing has created ‘defensible spaces’ as a means of reducing crime and
nuisance. Stolen cars used to be driven on the lawns between the houses, but now that
the gardens are in place there is no room. They say that it is all about creating
sustainable projects and sustainable relationships. The people with learning disabilities
feel safe and welcome on the estate. Local residents hold the project in very high esteem
and they advocate for and defend its members if the need arises. Local children have
joined in with painting the fences during school holidays, leading to a reduction in
vandalism. One tenant said, ‘We find that friends and neighbours are far more willing
to pull together and to help each other, and are once more gaining pride and enjoyment
in our community’.
Feelings of trust and safety
Putnam’s position moves us from the privacy of a friendship into the public arena
by including the concept of ‘thin trust’ in his description of social capital. Thin trust
is present when strangers view each other as potential friends and absent when they
regard each other as potential enemies. Campbell’s team (1999) failed to find much
thin trust in an English housing estate, and the MENCAP (1999) inquiry into
bullying showed just how reasonable it is for many people with learning disability to
avoid public spaces and public transport, especially the school run.
Unfortunately, inclusion advocates tend to ignore the shameful reality of bullying,
oppression and discrimination that is a daily experience for many people with
learning disabilities (MENCAP, 1999). It is curious to note that Valuing People is
silent on the matter of bullying, while the Department of Health does require mental
health services to address it (Department of Health, 2001a). It is here that social
capitalists have the advantage, since their goal of increasing thin trust precisely
attends to this agenda.
We all have to run the gauntlet of meeting strangers from time to time and
negotiate our way through thin trust in order to locate the new friends and
colleagues with whom we might enjoy thick trust, but there are extra challenges for
visible minorities, and this includes some people with learning disabilities.
Social capitalists task us with addressing these problems by challenging media
stereotypes, providing learning disabilities equality training, and actively promoting
positive relationships between people with and without disabilities. While social
capitalists are developing instruments to measure these things, they have no guid-
ance to offer on which tools are needed to make these changes, so we must look for
advice to inclusion advocates, as well as media studies, community development,
health promotion and students of the social psychology of stigma.
Inclusion advocates who wish to build links with community development work-
ers may find that social capital is the linking concept that will bring them together.
Any examination of trust and safety quickly moves into a consideration of
structural inequalities. Despite this, few inclusion advocates or social capitalists have
given much attention to the way in which structural inequalities around race or
gender impact upon the lives of people with learning disabilities. Social capital can
systematically oppress women (Riddell et al., 2001), people from black and ethnic
Social capital, social inclusion and services 201
minority communities (Campbell & MacLean, 2002), people with disabilities, and,
as Putnam notes, terrorist groups are strong on bonding relationships. Campbell
(2000) sums all this up as ‘antisocial capital’, although it is likely that many groups
have a mixture of benevolent and toxic effects, and few, if any, are unambiguously
virtuous or destructive.
Staff will need to respond to these complexities at a number of levels. First, a
focus on leisure and voluntary participation in the community will require services
to offer support in the evenings and weekends in ordinary community locations away
from learning disability premises, and so working arrangements will need to support
these activities. Secondly, staff will need to respond imaginatively to bullying, thin
trust and structural inequality.
Social connections
Both social inclusion and social capital theorists invite us to think about people with
learning disabilities as citizens who are able to make a contribution to the whole
community. This clashes with the current reality, where perhaps only a third of the
people utilizing learning disability services have even one non-disabled friend
(Robertson et al., 2001). Friendships between people with learning disabilities and
non-disabled people must overcome some difficulties, especially where there are
inequities in communication skills, disposable income and freedom of choice (Zetlin
& Murtaugh, 1988), but can be very rewarding for participants (Newton et al.,
1995). Indeed, we think that people with learning disabilities may well have the
potential to make an above-average contribution to the community.
Inclusion advocates have been eager to support people with learning disabilities to
take up positive social roles, such as householder, employee or student. While lip
service has been paid to participation as well as presence in the community, social
capitalists insist that attention is given to the quality of social relationships in these
settings. Simply achieving the status of a student does not build social capital if there
are few opportunities for networking and relationship building. Bridging relation-
ships with non-disabled students are not enhanced if the student is attending a
special class, at a special time and taking lunch in a special, segregated cafeteria. Just
as important is the support that is made available, for co-location alone does not
guarantee the development of friendships. So, for example, poorly skilled job-
coaches may unwittingly detach learning disabled workers from their non-disabled
work colleagues in order to provide intensive task training.
There are also particular challenges that arise from taking a focus on informal and
unregulated relationships. A learning disabled customer is legally entitled to fair and
equal service from the bar staff, but the Disability Discrimination Act 1995 does not
govern the behaviour of other drinkers in the public house. This means that a host
of awkward, unfriendly or downright hostile responses may be more in evidence in
unregulated social relationships—exactly in those areas that are well covered by
social capitalists.
A second reason why discrimination may be amplified in unregulated relation-
ships revolves around the practical transaction with the bar staff. This is governed by
202 P. Bates & F. A. Davis
clear rules for the encounter (placing an order, pulling the pint, paying for the
drink), while the informal connections with other drinkers in the pub are less defined
and, consequently, more difficult to negotiate. Similarly, in the workplace, practical
tasks may enable people with learning disabilities to demonstrate their abilities at
work and so allow social interaction to grow as their competence is recognized,
whilst equal opportunities policies constrain potentially negative responses of col-
leagues. In contrast, unregulated places that are about talking and little else may
provide few opportunities for this kind of broader relationship to emerge and so
people who don’t seem to fit in may be more comprehensively ostracized. One
person said, ‘I have a job, but no-one wants to go out with me in the evenings’.
Social capitalists demand that these challenges are addressed.
An analysis of social capital through the life-course reveals how there are particu-
lar rites of passage when capital accrues or is lost. A move into residential care,
perhaps on the death of a parent, can wipe out stocks of social capital—especially if
it involves relocation into a different neighbourhood (Riddell et al., 2001). Indeed,
entry into any care system may burn-off social connections, trust and reciprocity.
Staff need to be aware that addressing these issues can be just as important as the
selection of appropriate accommodation, medication or counselling.
Citizen power
Both social inclusion and social capital theories offer a familiar challenge in this
domain—that of increasing service user participation and advocacy.
Traditional services have been characterized by ‘vertical’ relationships in which
staff hold power over service users, while social capitalists and service user advocates
seek ‘horizontal’ relationships (Riddell et al., 1999).
There are a number of potential pit falls to watch out for here. As a social capital
perspective gains ground, there are the ever-present dangers to be avoided, includ-
ing:
• preferring ‘white’ social capital over culturally diverse manifestations of relation-
ships, trust and civic participation;
• adding informal community connections to the list of things that it is acceptable
to ‘prescribe’ for people using services;
• reproducing traditional power relationships of control and containment within
new community locations;
• that individuals who do not engage may be blamed for their situation.
From our experience these problems can come about because both social capital and
inclusion theorists risk unduly focusing on ‘slotting in’, rather than transforming
society. From this standpoint, society is perceived as fundamentally just and stable,
so that learning disability services simply need to locate a menu of vacant slots and
help the person to decide what they would like to do, learn the correct behaviour and
then engage in the social opportunity of their choice. Bourdieu (1983) challenges
this perception by reminding us how the ‘old boy’ networks use social capital to
Social capital, social inclusion and services 203
maintain their power and control, and advises us that this kind of social capital
should be dismantled and replaced by more equitable relationships.
Paradoxically and despite the above we suggest that it is also vital to take an
optimistic overview of communities. Reviews of supported employment (Riddell et
al., 1997) and volunteering (Bates, 2001b) note that expansion of the service is
restricted, not by a shortage of ‘hosts’ willing to offer opportunities to people with
learning disabilities, but by a shortage of state funding and therefore support staff.
By extension we may assume that there will be plenty of informal social settings that
would welcome people with learning disabilities, so long as we could arrange
adequate support.
A further example of the synergy possible by taking a dual perspective involves
advocacy services. These have devoted much time to supporting people with
learning disabilities to engage in formal decision-making processes. Service users
have learnt how committees work, how records are kept and distributed, as well as
the subtler tasks of lobbying and negotiating with senior managers. Meanwhile,
social capitalists have observed that, while the general membership of civic and
community associations have been falling, there has been an even faster decline in
the number of people willing to take office in these associations. In addition, recent
urban regeneration and service improvement strategies have emphasized the value of
public consultation and involvement, and sought new methods of reaching tradition-
ally excluded groups. This means that market expansion and labour shortages in
these community and civic associations neatly coincides with a new generation of
skilled and experienced people who happen to also have a learning difficulty.
Advocacy groups that have traditionally focused on long-term bonding in order to
reform the learning disability service could build bridging relationships with local
community organizations and campaigns. Some people with learning disabilities
might eventually leave the advocacy group in order to join other advocates for the
local community improvements that most interest them as citizens.
While there is general approval for specific social roles, such as that of employee
or student, taking an active part in civic, political or informal associations does not
earn universal praise. Staff operate within a contemporary society that appears to
place great store on garden redesign, for example, but which ridicules train spotting.
This might result in staff feeling comfortable about arranging a taxi for the learning
disabled person who wants to attend the agricultural college, but the same worker
may be less willing to arrange transport to a meeting of the local branch of railway
enthusiasts!
Separating out one’s rights as a citizen from one’s rights as an employee or for that
matter as a service user, can lead to contradictory allegiances for staff. A person’s
interests or eagerness to write to the newspapers about litter may embarrass the day
service staff member or spill over into unwelcome publicity for an employer. Despite
this, social capitalists demand that we support people with learning disabilities who
wish to vote, contribute to public discussions or agitate for social change.
In addition, those who provide formal or informal civic education should be
equally interested in the parallel questions, ‘How do I contribute to my community?’
and ‘How can I transform my community?’ Paulo Freire (1972) and other educators
204 P. Bates & F. A. Davis
of the liberation school have shown how the task of transforming society can be
attempted through alliances between disabled and non-disabled people; that is,
through the development of bridging social capital.
Community perception
In a recent training seminar, one day-centre worker described his own leisure time
as occupied entirely with solitary visits to the off-licence and watching TV game
shows, and therefore he did not see why isolation was a problem for disabled people.
We do not know if staff in learning disability services engage in community life to
a greater or lesser extent than the average, but it is likely that the personal attitudes
of staff will have a real impact on the lives of service users. This is illustrated by a
Department of Health study where inappropriate staff attitudes and behaviour was
the most frequently cited barrier to access by disabled people (Disability Matters
Limited & NHS Executive, 1999).
This suggests that there is some danger of staff defining service users’ lives by their
own personal choice of lifestyle, either by assuming that people with learning
disabilities will not be interested in community engagement or by evangelically
promoting their own personal interests.
Staff in learning disability services may also favour urban settings, as they appear
to offer more venues to people who use services, despite the high transport costs of
bringing everyone into a single point. Small, rural communities have fewer events
and buildings, but arguably more networks and informal opportunities to connect.
When there are more bridging relationships between groups in small communities,
positive or negative reputations can also spread quickly, and create or deny a new
resident a chance of a fresh start in a new social setting. This means that workers
engaged in community relocation should recognize informal networks as sources of
social capital and develop strategies in supporting service users to navigate them
successfully.
Staff and other allies therefore have a two-fold task: to recognize the unique
individuality of the learning disabled person and to similarly recognize the unique
attributes of the many available communities to which that person might contribute.
Such creative and individualized responses defy simple categorizations and press us
to create systems that promote artistry, rather than the regimented production of
standardized care packages. Since people with learning disabilities are likely to want
and need unique arrangements, there is a danger that the introduction of standard
monitoring systems will close down their leisure options to those listed on monitor-
ing forms, whilst treating the richness of local human communities as no more than
an arrangement of blank, featureless buildings and facilities.
Discussion
Attention to social capital is welcome as long as this emphasis does not eclipse other
important goals in the minds of service developers. For example, Wilkinson (1996)
asserts that income inequality is a fundamental cause of health inequality and that
Social capital, social inclusion and services 205
social capital plays no more than a mediating role in this relationship, while Putnam
(2000) sees social capital as the primary factor. We would argue therefore that
working on social capital must not become a cheap alternative to reducing income
inequality and must not divert us from the task of developing services that provide
for basic human dignity (Morgan, 2001).
As long as many learning disabled people lack a decent home, satisfactory income,
good health, meaningful employment, and freedom from discrimination and abuse
they are unlikely to view or be viewed as an asset to their neighbourhoods. The
complimentary relationship between social inclusion and social capital reminds us
that promoting social capital as a human service aim is a legitimate and long-term
solution to the isolation and segregation of many devalued groups. However, it is not
a panacea and needs bolstering with other approaches.
Social capitalists collect a diverse array of data from whole populations, as
illustrated by the range of issues under discussion. As there are a host of comparative
indicators already in use with the general population, some of these might also be
suitable for collecting aggregate data about people with learning disabilities and
comparing findings with the general population in order to discover the size of the
‘inclusion gap’ (Love et al., 2002). However, population-level data is a poor source
of guidance for what to offer to named individuals, and so care is needed in
interpreting these findings:
Sue lives in a suburb and works long hours in the city. She leaves early each morning
and gets home late at night. Almost every weekend she travels to visit friends in other
parts of the country. As a result, she does not know her neighbours. Despite her house
being often empty, she is safe from burglary as many of her neighbours are unemployed
and they maintain a vigorous neighbourhood watch group.
Social inclusion theorists would look at Sue’s connections with her neighbours, while
social capitalists look at the whole street and recognize that she benefits from the social
capital built up by her neighbours.
At the individual level, those staff who work on developing social capital therefore
also need to be skilled in recognizing other factors and have access to the expertise
of social inclusion advocates in how to choose, get and keep a home, a job and a
social life. Managers should be aware of the tension and difference in priorities that
each theoretical position taken on its own could have on resource allocation, and
strike an appropriate balance that supports people who use services and simul-
taneously invests in the whole community. Service designers need to strike a balance
between attempting to develop new ‘social capital or inclusion projects’, and the
subtler task of threading the approach through existing services.
Conclusion
If interpreted with care, the concept of social capital provides a helpful additional
perspective to learning disability services that are striving to promote social in-
clusion. The relationship is reciprocal, however, as inclusion advocates working with
learning disabled people have insights and experience that will support the pro-
206 P. Bates & F. A. Davis
motion of social capital for the whole community, as well as service users. Finally,
many of the issues that have been highlighted in this article apply equally to many
other groups who are at risk of exclusion. There is room for further dialogue.
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Leveraging Social Capital of Individuals with
Intellectual Disabilities through Participation on
Facebook
Carmit-Noa Shpigelman
Department of Community Mental Health, University of Haifa, Haifa, Israel
Accepted for publication 23 October 2016
Background Participation in social networking sites has
considerable potential to leverage the individual’s social
capital, including persons with intellectual disabilities,
whose real-world social networks are fairly limited.
Method This study aimed to understand how individuals
with intellectual disabilities use Facebook to access social
capital benefits, if at all. Qualitative interviews and
observations were conducted with 20 adult Facebook
users with intellectual disabilities.
Results The online participation enhanced their bonding
social capital as well as contributed to their psychological
well-being through increasing their online visibility,
popularity and sense of belonging. At the same time, they
experienced stress and frustration due to usage
difficulties, which prevented them from enhancing their
bridging
social capital.
Conclusions Participation in social networking sites may
also leverage bridging social capital of persons with
intellectual disabilities, but they need a more accessible
platform and ongoing support to ensure safe and fruitful
participation.
Keywords: disability, Facebook, social capital, social
media, social networking sites, well-being
Introduction
Participation in social networking sites (SNSs) can
leverage the individual’s social capital and contribute to
his/her psychological well-being (Bradley & Poppen
2003; Valkenburg et al. 2006; Steinfield et al. 2008; Mauri
et al. 2011). Potentially, participation in SNSs could have
similar social and emotional benefits for persons with
intellectual disabilities. However, to date, the
phenomenon of participation of persons with intellectual
disabilities in SNSs has received relatively scant attention
in research and practice (McClimens & Gordon 2009;
Shpigelman & Gill 2014b; Davies et al. 2015). Persons
with intellectual disabilities are often subject to public
stigma and feel the absence of peer friendships,
especially in the hours after school or work, and as a
result may experience social and emotional isolation in
the real world (Knox & Hickson 2001; Hamill 2003;
Emerson & McVilly 2004; Jahoda & Markova 2004; Pottie
& Sumarah 2004; Buckley et al. 2005; D’Haem 2008;
Lippold & Burns 2009). Their limited social networks
may restrict their opportunity to build social capital and
a sense of community belonging (Kampert & Goreczny
2007; Clement & Bigby 2009; Shogren 2012). The growing
role of information and communication technologies
(ICT), including SNSs, in shaping access to community
and social life has created an opportunity to leverage
social capital of marginalized groups in society, such as
persons with intellectual disabilities.
Social capital refers to the resources (financial, social
or emotional) that become available to the individual
through one’s social interactions (Putnam 2000; Lin
2001). Social capital is inherent to social networks and is
determined by one’s location within its structures (Burt
2005). The concept of social capital was previously
applied to research on social media (Ellison et al. 2007,
2010; de Z�u~niga et al. 2012). Putnam (2000) discerned
two basic forms of social capital: bonding and bridging.
Bonding social capital describes benefits from close
personal relationships, such as emotional or
instrumental support. Bridging social capital is
comprised of what Granovetter (1973) referred to as
‘weak ties’, that is, the relationship that is formed
among casual acquaintances, people with whom one
communicates on a daily, weekly or monthly basis, for
example, neighbours and service providers, without
© 2016 John Wiley & Sons Ltd 10.1111/jar.12321
Journal of Applied Research in Intellectual Disabilities 2018, 31, e79–e91
Published for the British Institute of Learning Disabilities
forming an intimate bond. Bridging social capital
provides novel information and new perspectives,
which can be exchanged with others in one’s network
(Granovetter 1983).
Previous studies that explored SNS use in the general
population found that participation in SNSs contributed
primarily to bonding social capital, meaning that users
were more likely to communicate with close friends
(Cheung et al. 2011; Nadkarni & Hofmann 2012; Duggan
et al. 2015). Bridging relationships or ‘weak ties’ that can
evolve from or be maintained through SNSs may also
be beneficial for persons with intellectual disabilities
who have limited social networks in the real world
(Verdonschot et al. 2009). Further research is needed not
only to validate these assumptions, but also to capture
the subjective experiences of individuals with
intellectual disabilities who use SNSs to increase their
social capital.
Previous works suggest that marginalized groups that
are isolated, stigmatized or lack real-world support, such
as people with disabilities, might be especially motivated
to participate in and gain from online social interactions
(McKenna & Bargh 1998; Braithwaite et al. 1999; National
Organization on Disability 2000; Mehra et al. 2004; Barak
et al. 2008; Leimeister et al. 2008; Shpigelman et al. 2009,
Shpigelman & Gill 2014a). Nevertheless, only few social
media studies have included individuals with
intellectual disabilities (McClimens & Gordon 2009;
Shpigelman & Gill 2014b; Davies et al.
2015).
Holmes & O’Loughlin (2014), for example, asked
three individuals with learning disabilities to describe
their experiences related to Facebook use. The
participants reported that using Facebook, they were
able to form or maintain social relationships, had
opportunities to share mutual hobbies with others and
received social support. They also reported higher
levels of self-esteem, linked to the number of their
Facebook friends. A recent online quantitative survey
on the usage patterns of persons with intellectual
disabilities who were Facebook users (Shpigelman &
Gill 2014b) found that they used the platform primarily
to connect with family members and real-world friends
and that participation on Facebook contributed to their
psychological well-being. The findings of the above
studies (McClimens & Gordon 2009; Shpigelman & Gill
2014b; Holmes & O’Loughlin 2014) emphasized that for
persons with intellectual disabilities, participation in
online social applications is beneficial mainly in terms
of social capital and well-being. Still, persons with
intellectual disabilities are underrepresented in social
media research.
The recent protest of the community of people with
disabilities against (among other issues) their lack of
representation in the Pew Research Center’s polls on the
use of online applications (NCIL 2011) underscores the
need for studies like the one presented herein. A
plausible explanation for the lack of representation of
people with disabilities in social media research is the
digital divide: persons with disabilities, and especially
with intellectual disabilities, have unequal access to and
experience limited usability of computer technology,
which might affect the prevalence of their participation
in SNSs (Haller 2010; Fox 2011; U.S. Department of
Commerce 2011). However, the tracking data published
by Pew Research Center’s Internet and American Life
Project indicate that following the recent advent of
Internet access via cell phones (smartphones) and other
mobile devices, there has been a dramatic shift in these
patterns among underrepresented groups (Smith 2013,
2015).
The lack of representation of persons with intellectual
disabilities in social media research might also be due to
the assumption that these online environments are not
suitable for persons with intellectual disabilities, given
their difficulty in understanding the associated risks,
which include, for example, divulging confidential
personal information to strangers and friends, and being
exposed to online forms of fraud, bullying and
harassment (Acquisti & Gross 2006; Debatin et al. 2009;
Taraszow et al. 2010; Buijs et al. 2016).
Despite these numerous challenges, the above-
mentioned studies indicated that participation in SNSs
can be valuable for persons with intellectual disabilities.
The complexity of the issue suggests that much research
is still needed. Previous studies in social media that did
include users with intellectual disabilities were limited,
either in terms of the qualitative sample size
(McClimens & Gordon 2009; Holmes & O’Loughlin
2014) or the selected focus (examination of usage
patterns; Shpigelman & Gill 2014b). In contrast, in this
study, the qualitative sample was relatively larger in
terms of qualitative sample size (Creswell 1998), that is,
20 Facebook users with intellectual disabilities were
surveyed and the focus was on capturing the subjective
experiences of individuals with intellectual disabilities
intellectual disabilities. This study examined how
individuals with intellectual disabilities use Facebook to
access social capital benefits, if at all. It should be noted
that although there are various SNSs such as Twitter,
MySpace, Pinterest, LinkedIn and Instagram, this
study’s focus is on Facebook as the most popular SNS
(Duggan 2015).
© 2016 John Wiley & Sons Ltd, 31, e79–e91
e80 Journal of Applied Research in Intellectual Disabilities
Method
Participants
Participants in the study had to meet the following
criteria: (i) have an official diagnosis of intellectual
disabilities, meaning that the disability was identified
before they reached the age of 18 years and is
characterized by significant limitations in both
intellectual functioning and adaptive behaviour,
manifested in conceptual, social and practical adaptive
skills (Schalock et al. 2010), (ii) be at least 18 years of age,
(iii) reside in the community and (iv) be active users of
Facebook (at least once a week). Recruitment flyers were
distributed face to face and online by the investigator and
the research assistant to organizations and centres that
provide services for people with intellectual disabilities,
as well as to disability advocacy groups. Then, the
organizations, centres and groups disseminated the flyers
to their clients and members. Recruitment continued until
data collection no longer produced new themes and data
saturation was achieved (Morse 1995). Based on the
concept of saturation, the first round of data collection
included 12 participants and then another eight
participants were added.
The final sample included 20 individuals (10 women
and 10 men), between the ages of 21 and 43 (average age:
30.2 years). Seven of the 20 participants had been
appointed a legal guardian (see Table 1). The diagnosis of
most of the participants (17 of 20) was mild level of
intellectual disabilities and that of three participants was
moderate level of intellectual disabilities. The majority
live in supportive community arrangements (villages) for
people with developmental disabilities. These are
inclusive, kibbutz-like communities that provide housing,
physical care, employment options and leisure activities.
Table 1 Description of the sample (N = 20)
Participant No.
Gender
(F/M) Age Diagnosis Living arrangement Having computer
1 M 23 Intellectual disabilities
+ cerebral palsy
With parents Computer shared with
others
2 M 27 Intellectual disabilities Alone (his/her apartment) PC
3 F 21 Intellectual disabilities
SCLA PC
4 M 26 Intellectual disabilities With parents PC
5 F 29 Intellectual disabilities SCLA Computer shared with others
+ Internet access via mobile phone
6 F 37 Intellectual disabilities Alone (his/her apartment) PC
7 M 26 Intellectual disabilities
+ Asperger’s disorder
With parents Computer shared with others
8 M 36 Intellectual disabilities Alone (his/her apartment) PC
9 F 28 Intellectual disabilities SCLA PC
10 F 24 Intellectual disabilities SCLA PC
11 F 34 Intellectual disabilities SCLA PC
12 F 32 Intellectual disabilities
+ vision impairment
SCLA Friend’s computer
13 F 34 Intellectual disabilities
+ cerebral palsy
SCLA PC
14 M 41 Intellectual disabilities SCLA PC
15 M 43 Intellectual disabilities SCLA PC
16 M 25 Intellectual disabilities SCLA PC
17 M 27 Intellectual disabilities SCLA PC
18 M 31 Intellectual disabilities
+ cerebral palsy
SCLA PC + Internet access via mobile phone
19 F 28 Intellectual disabilities SCLA Computer shared with others
20 F 39 Intellectual disabilities SCLA Computer shared with others
SCLA, Supportive community living arrangement; PC, Personal computer.
© 2016 John Wiley & Sons Ltd, 31, e79–e91
Journal of Applied Research in Intellectual Disabilities e81
The residents can live alone in their apartments or with
other roommates. They manage their social life mainly
inside the village.
Procedure
The study applied a qualitative phenomenological
paradigm to capture the subjective experiences of
Facebook users with intellectual disabilities and the
meanings they attribute to their experiences in terms of
social capital (Sokolowski 2000; Charmaz & McMullen
2011; Denzin & Lincoln 2011). The qualitative
instruments used in both rounds of data collection
included observations and personal interviews. Direct
observations (Patton 2002) were conducted, followed by
exploratory questions to understand the participants’
decisions to engage in specific activities on Facebook,
such as writing a post or uploading a photograph. To
minimize the effect of the observer’s presence, the
observations were conducted in the natural setting,
where the participants felt comfortable to login and use
Facebook. In addition, the observer was sitting next to
the participant but not too close, where she could view
the participant’s online activity. Furthermore, each
participant was observed twice while in the process of
using Facebook, to minimize the effect of the observer’s
presence (especially in the second observation) as well
as to avoid the risk of bias entailed in conducting only
one observation. A 2-week interval was maintained
between the two observations, each of which lasted
approximately thirty minutes (Marshall & Rossman
1989; Erlandson et al. 1993). Following the observations
and based on the observational field notes, an interview
guide was developed to get a deeper understanding of
the observed usage patterns. In-depth interviews of an
hour each included questions about the participants’
experiences, including their perceptions and feelings, as
the following questions exemplify: ‘In general, what do
you think about Facebook?’; ‘What do you feel when
you are on Facebook?’; ‘For what purpose do you use
Facebook?’; ‘What do you do with your Facebook
friends?’; ‘How do you decide which post to respond
to?’; ‘How do you feel when someone ignores your
friendship request?’; ‘Why did you decide to join these
Facebook groups?’
Data analysis
Data were obtained from approximately 260 pages of
interview transcripts and observational field notes,
which reflected participants’ objective experiences
(online behaviours – usage patterns) as well as their
subjective experiences (feelings and thoughts). The
interview transcripts and observational field notes were
triangulated and analysed to produce a set of themes in
relation to the participants’ Facebook experiences and
their understanding of online versus offline (face to
face) social relationships. Data were organized into
themes by the investigator (the author) in collaboration
with a research assistant, using an inductive thematic
content analysis procedure (Strauss & Corbin 1990). In
the first phase of the analysis, the investigator divided
the transcripts into meaningful chunks and coded them,
by assigning a brief descriptor. In the second phase of
data analysis, the investigator eliminated redundant
codes and then arranged them into themes, to facilitate
analysis of important thematic interrelationships. In
addition, quantitative content analysis was conducted to
describe the participants’ online behaviour (e.g.
frequency of use and main activities on Facebook).
Trustworthiness – validity and reliability
Lincoln & Guba (1985) proposed to use the terms
trustworthiness or rigour to establish confidence in
qualitative findings, rather than the concepts of validity
and reliability. To minimize bias and enhance
trustworthiness, the collected data were triangulated
through the use of two qualitative instruments –
interviews and observations (Lincoln & Guba 1985;
Patton 2002; Niesz et al. 2008). Both the observations
and the interviews were audio-recorded and transcribed
verbatim. The observation and interview memos,
including the participants’ comments and body
language, the settings, and the interviewer’s self-
reflections were also documented and used to enhance
the analytic process. The memos were part of the audit
trail that was examined by a peer researcher, as
described below, to minimize bias and enhance
trustworthiness of the findings (Morrow 2005).
Furthermore, a research assistant audited the
investigator’s analysis, checking the data to determine
relationships between thematic categories. This process
is also known as peer debriefing (Lincoln & Guba 1985).
Conflicting assessments were resolved through
discussions between the investigator and the research
assistant until a consensus was reached.
Ethical considerations
The protocol used for this study was approved by the
Ethical Committee at the author’s university and by the
© 2016 John Wiley & Sons Ltd, 31, e79–e91
e82 Journal of Applied Research in Intellectual Disabilities
National Department of Welfare and Social Services.
Persons with intellectual disabilities who volunteered to
participate in the study reviewed and signed an
informed consent form. Participants under a guardian’s
supervision had to provide the guardian’s signature on
the informed consent form as well as their own. Finally,
personal identifiers were eliminated from the results to
ensure anonymity and maintain confidentiality.
Results
The majority of the participants (60%) reported using
Facebook every day, while the rest (40%) reported using
it at least once a week. They all used Facebook
independently, as noted also in the observations. The
participants reported that they used Facebook mainly
for uploading and observing photographs and video
clips (‘My favorite part is looking at photos’) and for
posting brief messages (‘I write posts about what I did
today or how I feel’). A few were accustomed to using
the chat option to schedule a face-to-face meeting or to
contact customer service (‘I use the chat only for short
conversations – “How are you doing?”’). Other
participants reported that they share posts, photographs
or video clips on Facebook (‘This is really
cute, so I wanted other people to see it’) and join
groups with common interests (‘The group members
always post good recommendations for trips’). Only few
reported that they play Facebook games.
The thematic content analysis of the observation field
notes and the interview transcripts revealed five major
themes related to the participants’ subjective experiences
and the meanings they attributed to their experiences in
terms of social capital. The five major themes that
emerged from the analysis were mainly related to issues
of identity and belonging: (i) an opportunity to be like
(non-disabled) others, (ii) becoming a member of the
community, (iii) becoming visible to others, (iv)
increasing one’s popularity and (v) positive vs. negative
feelings.
Theme 1: An opportunity to be like (non-disabled)
others
The participants reported that their main reason for
joining Facebook was because everyone they know (e.g.
family members, friends and service providers) use it
and they wanted to feel ‘like everyone else’: ‘All the
time I kept hearing from everyone around: “Facebook,
Facebook, Facebook”’; ‘Everyone talked about it’; ‘It has
become a trend’. It seemed that they perceived the
participation on Facebook as a positive status they
wanted to adopt. Some of the participants reported that
they joined Facebook based on the suggestion of their
teacher, tutor or friend: ‘My friend told me that he is
going to open a Facebook account so I decided to do the
same’; ‘At the beginning I did not want to join
Facebook, but a girl that I met in a computer class uses
it frequently and she said we could continue to
communicate via Facebook after the course was over.’
Theme 2: Becoming a member of the community
The participants reported that they used Facebook to stay
connected to their real-world friends (current and past
friends) and family members. It seemed that the
availability of the online communication made them feel
part of the community. They described it as follows: ‘We
can stay in touch even if we don’t talk regularly’; ‘I had
an old school-friend who[m] I hadn’t seen for years;
suddenly she sent me a friendship request on Facebook
and we reconnected’; ‘If I have friends from the past, I
can write to them on Facebook.’ One of the participants
was observed checking enthusiastically the likes and
responses he received to his post. When he was asked for
his reaction and feeling, he said: ‘I am happy because I
don’t get to talk with everyone everyday, so on Facebook
they like talking with me.’ Another participant was
observed posting a comment to his Facebook friend’s
photograph – ‘Very cool pic!’ – and then he explained to
the observer: ‘There are members of our community who
don’t live here [in the same facility], I don’t see them
often, so we respond to each other’s posts and this way
we stay in touch.’ The participants connected with their
real-world friends mainly through responding to their
posts (rather than opting for one-on-one communication
via the chat feature).
It should be noted that the messages posted by the
participant’s on their own or others’ Facebook timeline
were brief messages and did not include personal
issues, because they had been instructed by their family
members and/or professional caregivers to protect
themselves from the associated risks (being exposed to
virtual forms of fraud, bullying, and harassment). They
described their Facebook activities thus: ‘[I use
Facebook] – not for personal issues, but to schedule a
meeting and [to discuss] what things to bring [to a
meeting or a party]’; ‘Secrets and personal issues I
discuss on the phone, not on Facebook.’ Nevertheless,
the immediate and succinct online communication on
Facebook seemed to contribute to the participant’s sense
of belonging to the community.
© 2016 John Wiley & Sons Ltd, 31, e79–e91
Journal of Applied Research in Intellectual Disabilities e83
Becoming a member of the community was achieved
also by joining Facebook groups. The participants
reported joining groups with common interests, such as
hobby or fan groups. They perceived their group
membership not only as an opportunity to learn new
things, but also as a way to have more friends and
share new ideas with them: ‘I look for friends in these
groups and send them a friendship request.’ One of the
participants demonstrated in the observation how he
looked for new activities on specific groups and
explained his motivation: ‘This is a group of the
residents in this facility, so we can keep communicating
after retiring to our separate rooms, and the other three
groups are about trips. I can look for routes that would
be accessible to everyone here.’ Another participant,
who is a member of several Facebook groups, reported
the following: ‘This is a group of people who live in my
city and take care of dogs. I get information [through
the group] and attend adoption events. I also share this
information, so others will come and adopt a dog.’
Theme 3: Becoming visible to others
The participants emphasized their desire to be visible
on this online platform. They became visible through by
reacting to others by taking a passive role, such as using
the Like function, or by taking an active role, such as
posting (visual materials and brief messages) or sharing
information: ‘I can’t meet everyone [face-to-face], so I
want to tell them what I do. I want them to know that I
am [an active person]’; ‘When I share something, all my
friends can see it and that’s good’; ‘Like is like [saying]
‘I saw and heard what you have said. ’’This was also
observed in their Facebook use. For example, one of the
participants logged in to Facebook and the first thing
she did was like the new posts, mainly photographs
uploaded by her friend. When she was asked to explain
her action, she said: ‘I always do like to others and I like
that others do like to me. It is like encouragement. Only
if a photo is really unique will I write something,
because it is hard for me to write.’ Their visibility on
Facebook made them feel present as well as be
perceived as present in the online environment.
Theme 4: Increasing popularity
The participants’ sense of presence, achieved by their
visibility – as indicated above, made them feel popular.
For example, a participant who was observed liking
photographs and greetings posted by his friends about a
soccer group, explained why he reacted: ‘It is important
that they see I am involved, I respond. I am the deputy
chairman of the fans; it’s an important role. They should
know that I care about them.’ Participants also felt that
the more Facebook friends they had – the better, as they
saw it as a sign of their increased popularity. They
described it as follows: ‘On Facebook you should have
as many friends as you can’; ‘You need many friends in
order to get many [responses]’; ‘I feel good when I have
a lot of [Facebook] friends’; ‘When I see that I have
many friends, it makes me feel happy.’ The majority
accepted friendship requests only from people whom
they had met face to face, thus following the explicit
instructions conveyed primarily by their family
members. Only a few accepted every friendship request
received. For example, one participant showed the
observer that he has more than 400 Facebook friends
and said the following: ‘I am happy [having many
friends]. I accept everyone so I have many friends, even
if I don’t know them. I don’t care that they see my
posts, I have nothing to hide.’ It should be noted that
although the participants wanted many friends, they
did distinguish between Facebook friends and real-
world friends: ‘These [real-world friends] are people
you meet. You really talk to them and you can go
together to different places. On Facebook, the friends
are not real.’
Theme 5: Positive vs. negative feelings
The online visibility and popularity of the participants,
as described above, seemed to contribute to their
general psychological well-being. They reported having
positive feelings following Facebook use, such as mood
elevation, happiness, laughter and pleasure: ‘I am
happy when I watch or upload beautiful photos’; ‘When
I have a bad day, people send me funny things or a
hug’; ‘People write positive posts and it makes me feel
better’; ‘I feel good when people like [my songs].’
During one of the observations, a participant received
over 40 happy birthday wishes in her Facebook timeline.
She smiled and replied to each person who greeted her;
she posted ‘thanks’, ‘what a lovely card’ or ‘you made
me happy.’ Others said also that using Facebook, they
feel calm: ‘It’s a good way to spend time, to relax’;
‘Sometimes I have a hard time falling asleep and then I
go on Facebook and check what other people have
posted.’
On the other hand, they also noted experiencing some
technical and conceptual difficulties pertaining to the
various communication options, which limited their full
participation on Facebook and made them feel stressed
© 2016 John Wiley & Sons Ltd, 31, e79–e91
e84 Journal of Applied Research in Intellectual Disabilities
and frustrated. Initially, they had experienced difficulty
setting up the account, because of the many questions
they had to answer. They also avoided using functions
that required text typing, such as the chat function: ‘To
use [chat], you need to type fast; it’s stressful, because
the other person is waiting for a response’; ‘This [chat]
is difficult for me. You have to write fast, so the other
person doesn’t have to wait a long time, and I write
slowly. I don’t want to write a lot; I talk on the phone.’
They also encountered difficulty reading texts posted on
Facebook: ‘I don’t like it when people write long posts.
If I don’t have the energy, I just don’t read them.’ The
literacy difficulty was also demonstrated in the
observations, when the participants preferred to review
visual posts, such as photographs or video clips, rather
than to read or write posts.
Some of the participants reported having difficulty
adjusting to the frequent design changes in Facebook:
‘Now the Facebook [menu] is on the left side; suddenly
it was changed. This is not convenient for me’; ‘I don’t
get why the design was changed. Instead of Hebrew,
it’s in English! Why did they change it? Until now it
was OK.’ Others reported the lack of technical usage
skills: ‘I want to delete them [Facebook friends], but I
don’t know how’; ‘I haven’t learned how to upload
video clips or music’; ‘I don’t know what to do so
people won’t send me messages, stupid stuff,
advertisements’; ‘The sound of the Facebook alerts that I
get on my cell phone is annoying.’
In addition to inaccessibility related to lack of technical
know-how, some of the participants expressed difficulty
in understanding the Facebook language. Although they
used specific functions, such as timeline, tag or share, it
seemed that they did not understand the meanings of
these common terms, or the online actions associated
with these terms. This was evident mainly through the
observations: ‘I write that this is mine [tag]’; ‘I didn’t
know it is called a group’; ‘I don’t know what personal
settings means.’ These conceptual barriers led them to
experience negative feelings following their Facebook
use. For example, they tended to be offended by others’
rejection or disregard of their friendship request: ‘I am
offended when people don’t respond to my posts’; ‘I was
offended when they didn’t want to friend me’; ‘When
people don’t respond, it’s frustrating. . . It’s like you are
talking to someone and he ignores you.’
Discussion
The present study aimed to describe the subjective
experiences of Facebook users with intellectual
disabilities and to understand the meanings they
attribute to these experiences in terms of social capital.
In general, it was found that the majority of the
participants use Facebook in the same ways as the
general population does, that is at least once a day
(Duggan et al. 2015). However, as opposed to the
general population, and especially youth (Hampton
et al. 2012), it seems that the participants in the present
study give more than they receive in their interactions
with their Facebook friends. They mainly watched and
liked photographs or video clips uploaded by their
Facebook friends. The vision-based functions, such as
reviewing photographs and video clips or playing
games, are more accessible to users with intellectual
disabilities because these functions depend less on
cognitive and literacy skills than do the verbal-based
functions, such as writing and reading posts or replying
to others (Abbott 2006; Morgan 2008; Wohn & Lee 2013;
Shpigelman & Gill 2014b).
Although the preference of the participants in the
present study was to look at photographs or watch video
clips, they also engaged in the more active function of
posting, yet they clearly emphasized that they wrote only
brief posts and kept their responses to others’ posts short
(due to the limited cognitive and literacy skills). In
contrast to previous studies (Hampton et al. 2012;
Shpigelman & Gill 2014b), the participants in the present
study used Facebook not only passively, as consumers,
but also actively, as contributors. It seems participants
were well aware of this difference, as they noted that
actively posting on Facebook was what enabled them to
gain visibility. As indicated in the literature related to
general (non-disabled) users (Egebark & Ekstr€om 2011;
Hampton et al. 2012), visibility is also very important for
persons with intellectual disabilities, who experience
greater social and emotional isolation compared to the
general population (Jahoda & Markova 2004; Pottie &
Sumarah 2004; Lippold & Burns 2009). It seems that the
online visibility helped them to enhance their social
capital, mainly among their bonding relationships
(Putnam 2000).
Furthermore, when the participants’ Facebook friends
reacted using active functions such as liking or replying
to their posts, they gained a sense of social presence,
which compensates for the lack of shared physical
space. In the framework of social presence theory (Short
et al. 1976), social presence refers to the feeling of being
together, experiencing social interactions with a virtual
or remotely located communication partner. Thus, a
sense of social presence is an essential means to
experience direct, positive and personal human contact
© 2016 John Wiley & Sons Ltd, 31, e79–e91
Journal of Applied Research in Intellectual Disabilities e85
(Lombard & Ditton 1997), which in turn can lead to
enhanced social capital. However, to make online
environments cognitively accessible for persons with
intellectual disabilities, abstract terms, such as social
presence, should be conveyed through concrete
language, that is images or emoticons (L€ofgren-
M�artenson 2008; Mervis 2009).
To recap, participants in the present study achieved
visibility through the use of the Like function and by
actively posting on Facebook. Seeing that these postings
garnered responses gave them a sense of social
presence, which made them feel that they were popular
among their Facebook friends. It seems that the
participants strived to become popular online in order
to leverage their social capital (having more friends) and
not as a narcissistic action which is the typical
motivation in the case of non-disabled users (Ong et al.
2011). The participants’ online visibility and popularity
created a sense of belonging and contributed to their
sense of community. This finding supports previous
studies in indicating that participation in SNSs can
increase the individual’s sense of belonging (Effing et al.
2011; Hampton et al. 2011; Strayhorn 2012).
The concept of sense of belonging emphasizes one’s
basic need to feel valued by or important to others and to
feel that one fits in with others in the social environment
(Hagerty et al. 1992). A sense of belonging is an
important element in developing and managing the
individual’s relationship with others. It also has an
impact on the individual’s mental and physical health
(Ross 2002; Hale et al. 2005). Cummins & Lau (2003)
found that a sense of connectedness had a more beneficial
effect on people with intellectual disabilities than did
being physically integrated into the general community.
In the present study, it seems that the participants’ sense
of belonging facilitated their sustained online
participation (Pooley et al. 2005; Zhao et al. 2012), which
in turn led to enhanced social capital. This finding
supports previous studies that demonstrated an
association between online sense of belonging and social
capital among non-disabled users (Hampton et al. 2011;
Kim 2011; Muscanell & Guadagno 2012).
The participants gained a sense of belonging also by
joining Facebook Groups. Facebook Groups is a module
that is useful for generating discussions and sharing
information (Pi et al. 2013). However, that was not the
main gain perceived by the study participants (users
with intellectual disabilities): although they ostensibly
used it to obtain information related to their hobbies,
unlike non-disabled users, they were mostly interested
in making more online friends.
On the whole, the cumulative effect of online social
participation seemed to contribute to the participants’
social capital and increased their psychological well-
being. The current findings are also in line with those of
studies that reported a positive relationship between
participation in SNSs and psychological well-being
(Valkenburg et al. 2006; Ellison et al. 2007; Mauri et al.
2011; Hampton et al. 2012; Nadkarni & Hofmann 2012;
Indian & Grieve 2014). Furthermore, interacting on
Facebook contributed to the participants’ psychological
well-being, as it provided them with an opportunity to
experience a normal identity. As opposed to non-
disabled users, who report construction of various
identities in online settings such as SNSs or dating
websites (Suler 2002; Yurchisin et al. 2005; Zhao et al.
2008), it seems that the participants in the present study
(individuals with intellectual disabilities) did not
produce new identities online. However, the
participation on Facebook provided them an equal
opportunity environment, in which their disability is
less visible (Barak & Sadovsky 2008), thus minimizing
any disability-related stigma and enabling them to feel
‘like everyone else’. It seems that they held the
traditional concept of normalization (Solvang 2000;
Davis 2013), meaning that through their online
participation, they felt they were able to fulfil their
desire to be integrated into society and to be treated as
normal (Deatrick et al. 1999; Caton & Chapman 2016).
The findings of the present study emphasize that the
‘flattening effect’ of social media applications, that is,
the blending and melding together of different social
circles in the online environment (Lewis & West 2009),
may help persons with intellectual disabilities leverage
their social capital, thus creating a beneficial effect and
promoting their sense of well-being.
The number of Facebook friends, or at the very least,
striving for a high number of friends, may have served
as another measure of social ‘normality’ for the
participants. All of the participants associated the ability
to achieve online visibility and popularity with the
accumulation of Facebook friends. In other words, they
attributed the principle of ‘the more the better’ to
Facebook friendships, which is a common perception
among Facebook users (Kim & Lee 2011; Nabi et al.
2013). Nevertheless, the majority did not blindly follow
the principle of ‘the more the better’ and refrained from
extending friend requests to or accepting them from
people whose acquaintances they had made solely
online. Much like other non-disabled users (Ellison et al.
2007; Nadkarni & Hofmann 2012; Duggan et al.
2015)
and disabled users (Shpigelman & Gill 2014b; Holmes &
© 2016 John Wiley & Sons Ltd, 31, e79–e91
e86 Journal of Applied Research in Intellectual Disabilities
O’Loughlin 2014), the participants in the present study
used Facebook mainly to communicate with their offline
(real-world) friends, that is, family members, friends
and service providers, with whom they had already met
face to face (bonding relationships). Although some of
them did communicate with their ‘weak ties’
(Granovetter 1973, 1983), and others joined Facebook
groups, which provided them with an opportunity to
increase their bridging relationships (Putnam 2000), it
seems that the majority did not reap the full benefit of
Facebook’s potential promise. In other words, they did
not succeed in leveraging their social capital to the
extent that they had hoped. A plausible explanation for
this finding is the explicit message they received from
their family members and professional caregivers and
which most of them took care to follow, namely, to
avoid corresponding with people whom they had never
met face to face. The fact that the majority of
participants followed these safety instructions and
indeed learned to use Facebook relatively safely is
worth noting, as it contradicts the common perception
that participation in SNSs may be risky for persons with
intellectual disabilities (Acquisti & Gross 2006; Debatin
et al. 2009; Taraszow et al. 2010). Furthermore, despite
the fact that their expectations were not fully met and
despite the imposed limitation of adhering to the safety
guidelines provided, users with intellectual disabilities
still managed to derive pleasure and social leverage
(related to increased visibility, social presence and a
sense of belonging) from their use of Facebook.
Another plausible explanation for the above finding
(i.e. the majority of participants did not use Facebook to
expand their social circles) is the platform’s reliance on
literacy skills which was a source of difficulty for users
with intellectual disabilities. Also the interface design on
Facebook was mentioned by participants as an obstacle,
as was reported in previous studies (Haller 2010;
Shpigelman & Gill 2014b). Some participants noted the
absence of an ongoing support system. As noted in
previous studies (Townsley 1998; Tuffrey-Wijne &
McEnhill 2008; Moloney 2012; Shpigelman & Gill 2014b),
linguistic simplification could help users with intellectual
disabilities to understand a feature or the programme and
the meaning of terms used. It could also enable them to
leverage their social capital while using Facebook safely.
Recently, major technology companies (e.g. Facebook,
Dropbox, Adobe, Yahoo and Microsoft) have initiated an
accessibility task force titled ‘Teaching Accessibility’,
which aims to make their products more accessible to
people with various disabilities (Davies et al. 2015;
Diament 2015).
To recap, the present study has shown that
participation in social media is valuable for persons
with intellectual disabilities. This activity can contribute
to their visibility and social presence, making them feel
popular among their offline friends and, in this
manner, it promotes their sense of belonging to the
community, increases their sense of well-being, and
enhances their bonding social capital. Participation in
SNSs by persons with intellectual disabilities has also
the potential to leverage their bridging social capital,
but they need an even-more accessible platform and
ongoing support.
The study has implications for both practice and
research. Practitioners can use SNSs to assist persons
with intellectual disabilities to leverage their social
capital, for instance, by creating groups that connect
various organizations or centres. People with intellectual
disabilities or with other disabilities, more specifically,
residents and employees who are affiliated with a single
organization or centre but physically belong to separate
facilities can find in Facebook an opportunity to make
new online friends, with whom they can communicate
safely. In addition, practitioners should define for their
clients with intellectual disabilities an explicit policy
regarding Facebook use and devise ways to make the
online environment accessible for their needs, while still
protecting their privacy and security.
The present study had several limitations that should
be addressed in future research. First, the majority of
participants were diagnosed in the upper range of the
intellectual disabilities spectrum and they were
relatively tech-savvy consumers. Future research should
attempt to survey a more representative sample of
people with intellectual disabilities, including those who
do not use Facebook or who use it less frequently, in
order to compare their experiences with those of SNS
users with intellectual disabilities, and to learn how to
adjust the online social environment to suit the needs of
current non-users. Second, the sample included 20
participants, as is common in qualitative research.
Future research should reach out to a larger cohort and
attempt to integrate quantitative instruments to measure
the impact of the online participation in terms of social
capital and well-being. In addition, it would be helpful
to hear the perspectives of family members and
professional caregivers about the participation of
persons with intellectual disabilities in SNSs. In general,
the findings of this study indicate that participation in
SNSs is doable and can have beneficial effects for
persons with intellectual disabilities; these benefits
should be further explored.
© 2016 John Wiley & Sons Ltd, 31, e79–e91
Journal of Applied Research in Intellectual Disabilities e87
Acknowledgments
I am very grateful to the individuals who volunteered
and participated in this study.
Source of funding
This study was supported by the Israeli Shalem Fund
for development of services for people with intellectual
disabilities in the local councils (108/2015).
Conflict of interest
No conflict of interest has been declared.
Correspondence
Any correspondence should be directed to Carmit-Noa
Shpigelman, Department of Community Mental Health,
University of Haifa, 199 Aba-Khoushy Ave, Mount
Carmel, Haifa 3498838, Israel (e-mail: carmits@
univ.haifa.ac.il).
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Journal of Applied Research in Intellectual Disabilities e91
IDO
DEAF EDUCATION AND BRIDGING SOCIAL CAPITAL;
A THEORETICAL APPROACH
CHRISTIAN P. WILKENS AND
THOMAS P. H E H I R
WILKENS IS A DOCTORAL STUDENT,
HARVARO GRADUATE SCHOOL OF EDUCATION,
CAMBRIDGE, MA. HEHIR IS PROFESSOR OF
PRACTICE, HARVARD GRADUATE SCHOOL OF
EDUCATION.
HE AUTHORS use elements of social capital theory to explore the rap-
idly changing landscape of deaf education in America. They suggest that
the formation of relationships, and networks of relationships, between
deaf students and adults has a value that often goes undetected or un-
derappreciated in deaf education. The authors point out that social
capital theory, as applied to deaf education, generates a number of po-
tentially productive areas for improving outcomes among deaf students,
and for future research in the field. The article includes discussion of a
number of positive steps to promote bridging social capital among deaf
students.
fears will predominate if its children are
brought up in com[>letcly hearing-ori-
ented wodds. The tteaf child who does
not know any deaf adults is a tragic fig-
ure, one who has no roots and no
chance of devek)ping a positive Deaf
identity’. This child is all too likely, in the
minds of some, to accept the hearing
wodd’s judgment and condemnation
of the Deaf as medical anomalies—
rather than people—who are lacking or
incomplete.
Deaf children have always heen at
risk of social isolation from their hear-
ing peers, and from the hearing adult
world around them. So, too, have deaf
children often been at risk of getting a
substandard education. Outcomes for
deaf students, broadly considered,
have persistently lagged behind those
of their hearing peers. As a result, re-
formers and educators have heen tin-
One stoH’ widely .shiirctl within the
American Deaf community, probably
apocr\phal. is that of a little hoy whose
parents find him cr>’ing inconst)Iably
one day after school. They ask him
why he is ciying, and he replies that he
is afraid to die. His mother, unsettled
and a little apprehensive, asks him
why in the world he is afraid, since—
after all—he’s a little boy. and has a
long and happy life ahead of him. The
boy replies that he is positive that he
will die before he grows up because he
is deaf, and he has never met any deaf
adults. Another version of this story
has the boy convinced that, instead of
dying, he will become hearing as he
grows up (Mindel & Vernon, 1987).
In either version, the story illustrates
the sort of misunderstanding of deaf-
ness, and the social isolation of deaf
children, that the Deaf community
VoniMF. 153, No. 3, 2008 .4.\IKRK:A.\ Ai-.s OF TH1-: DKAI-
DEAF EDUCATION AND BRIDGING SOCIAL CAPITAL
kering with their approaches for as
long as schools for the deaf have
existed—a period now approaching
two centuries in the United States
(Baynton, Gannon, & Bergey, 2007).
In the present article, we use ele-
ments of social capital theory to ex-
plore the rapidly changing landscape
of deaf education in America, and to
suggest what we believe are positive
steps that could be taken to improve
education for deaf students in the
United States. We believe that the so-
cial capital framework we present here
helps to illuminate and clarify some of
the more complex features of educa-
tional reform for deaf students, and as
well generates a number of productive
areas for future research in the field.
Social capital theory posits that human
relationships, and networks of rela-
tionships, have a value that often goes
undetected or underappreciated in
education. Human relationships rely, at
their most basic and profound levels,
on communication—which, for deaf
students, is of overriding concern.
Deaf Education and
Relational Networks
Communication has been at the heart
of deaf education from the beginning,
since by it students connect with the
world and form the sorts of social net-
works that are essential for acquiring
access to information, gaining em-
ployment, and finding satisfaction in
community life. Yet debates over com-
munication with deaf children have
never been ruled by empiricism
alone; power, ideology, and politics
have tangled over what sort of ap-
proaches “should” be used with deaf
children, and what sorts of eventual
outcomes the field ought to seek. Ex-
cellent historical reviews of the com-
munication debates can be found in
Baynton (199H), Branson and Miller
(2002), and Lane (1992).
There is no broad consensus on
what kind of communication modal-
ity works “best” with deaf students.
Gallaudet Research Institute (GRl)
data (2005) indicate that “auditory/oral
only” approaches are currently used
with 48% of deaf and hard of hearing
children in the United States, “sign and
speech” approaches with 40%, and
“sign only” approaches with just 11%.
Philosophical and educational de-
bates over deaf education gained legal
and moral weight with the enactment
of Public Law 94-142, the Education
for All Handicapped Children Act, in
1975- While it secured rights for many
deaf people, PL. 94-142 and later revi-
sions of disability law and education
policy made explicit the concept that
deaf people were disabled—a deeply
divisive issue within the field (Bran-
son & Miller, 2002; Corker, 1998;
Jankowski, 1997; Lane, 2002). PL.
94-142 also accelerated a shift of deaf
children out of special schools that
was already well under way O. Cohen
(1994) and Stinson & Antia (1999) re-
poaed that by the mid-1990s, 91.1%
of deaf students were being educated
in some capacity in their local schools.
Moores (2006), using data sets from
GRI’s Annual Survey of Deaf and Hard
of Hearing Children and Youth, con-
firmed an enrollment decline of more
than 60% nationally at special schools
or centers for deaf children between
1970 and 2000.
The physical location of schooling
provided to deaf students matters, be-
cause in tandem with communication
modality, it affects the range of peers
and adults with whom students may
interact and form relational networks.
Moving out of special schools means
that deaf students are exposed to
fewer deaf peers, and—depending on
school type—fewer deaf adults. As we
comment below, this is a serious prob-
lem that must be addressed.
Technology has also rapidly changed
the social worlds of deaf children. Per-
haps the most educationally and so-
cially significant technological change
for deaf children has been the advent
of cochiear implants, first approved for
use in humans in the United States by
the U.S. Food and Drug Administration
in December 1984. The best estimate
of current cochiear implant prevalence
appears to be 11.2% among deaf chil-
dren nationally, though this varies by
region, from 7.3% in the West to 13.1%
in the South (GRI, 2005).
Though consensus in the field has
yet to form on precise educational
“best practice” with deaf children who
have cochiear implants, the devices
require, a priori, some version of the
auditory/oral educational approach—
which was, if only briefiy, declining in
popularity among educators of deaf
students when cochiear implants
were approved in 1984. It is equally
clear that deaf children using cochiear
implants present distinct educational
challenges and opportunities, com-
pared with deaf children who do not
use the devices (Blamey et al., 2001;
Hammes, Novak, Rotz, Willis, & Ed-
mondson, 2002).
Notably, there has been at least one
point of stability with respect to the
social and educational experiences of
deaf children over the past several
decades: their families. Researchers
have long known that most deaf
children (more than 90%) grow up
in mixed households, that is, ones
in which the parents are hearing
(Braden, 1994), and further, that very
few deaf children (less than 4%) are
exposed to competent, consistently
visual language models at home or at
school—even those children who at-
tend residential or day schools for the
deaf. Though researchers have de-
bated the exact prevalence level for
years (Moores, 2001), recent trends in
genetics and preventative medicine
do not seem likely to alter the frac-
tionally small proportion of deaf chil-
VoLUME 153, No. 3, 2008 AMERICAN ANNALS O F THE DEAF
dren who have other deaf family
members any time in the near ftjture
(Mitchell & Karchmer, 2004; Schein &
Delk, 1989). Even households that at-
tempt to learn American Sign Lan-
guage (ASL) for use with their deaf
children are learners with their chil-
dren, and tend to use various gestural
pidgins (Braden, 1994). Worse, most
educators of deaf children are them-
selves hearing—and tend either to
lack ASL fluency or to use communica-
tion systems that compromise gestural
intelligibility (Kluwin, 1981; Luetke-
Stahlman, 1988; Mayer & Lowenbraun,
1990).
Nonexistent, ad hoc, or emerging
language skills among family members
and educators who work with deaf
children present major challenges for
the development of social interactions.
How can deaf children, who often do
not have good language models at
home, possibly form either wide or
deep relational networks? Further, if
most of those same children also lack
good language models at school,
how will those networks ever form?
We believe that current trends toward
greater inclusion of deaf children in
traditional public schools, and toward
increasing early-age cochlear implant
use, underscore an urgent need for ed-
ucational institutions to understand
the basis of social capital formation,
and to deliberately help build success-
ful relational networks between deaf
students and deaf adults.
Deaf Education and
Social Capital
Communication is fundamental to
how human minds are constructed,
how culture manifests, and the identi-
ties children and adults develop (Bar-
rett, 2002). The available range of
communication choices, as many
parents have understood them, has
typically come down to either oral or
signed language systems. The distinc-
tion between the two has often yielded
differential access to human, cultural,
and social capital; deaf children who
learn oral or written English gain ac-
cess to the human, cultural, and social
capital attendant on the English-using
community, while deaf children who
learn ASL gain access to the human,
cultural, and social capital of the Deaf
world (Lane, Hoffmeister, & Bahan,
1996; Padden & Humphries, 1988).
Many parents, family members, and
educators have made decisions about
language—and modality use—with
deaf children based on implicit or ex-
plicit calculations of the sorts of capi-
tal to which they want deaf children to
have access.
It is clear that the choices families
make about language and communica-
tion for deaf children have an impact
on how (and with whom) their chil-
dren will be able to socialize as they go
through life. There has been, to date,
very little empirical work on the rela-
tive value of these social interactions to
deaf children themselves—it is almost
as if discussions of language with deaf
children have been entirely surren-
dered to the ideological debates over
“oral versus manual.” We believe this is
a serious gap in the field, and propose
that it is both possible and necessary to
quantify the value of social capital ac-
cruing to deaf children as a conse-
quence of decisions about language
and education.
Deafchildren, like any children, be-
gin to form relationships with others
at very early ages. However, they face
socialization challenges unique to the
communication impacts of deafness.
One frequently observed dilemma for
deaf children is that, unless they are
among the 3 % ^ % of deaf students
who grow up witb a fluently signing
Deaf parent, they do not share a com-
m o n language with their parents,
their neighbors, or their community
(Mitchell & Karchmer, 2004). The so-
cialization of deaf children has histori-
cally happened—and for most chil-
d r e n , still happens—withi n school
(including preschool) contexts (Ram-
sey, 1997; Vygotsky, 1962, 1978). Thus,
a look at the outcomes of socialization
and social network formation by deaf
children at school makes conceptual
sense and provides a grounding for
understanding s o m e of the cost-bene-
fit analyses that parents and educators
of deaf children ultimately must make
with respect to communication.
Social theorists have long pointed
out that differences exist b e t w e e n
people in the resources to which they
have access based on relational net-
works (Bourdieu , 1986; Coleman,
1988; Portes & Landolt, 1996; Putnam,
2000); such networks lie at the founda-
tions of social capital formation. Robert
Putnam distinguished two basic types
of social capital emerging from rela-
tional networks: bonding and bridging.
Putnam posited that bonding social
capital consists of a set of resources ac-
cessed through relatively direct reci-
procity within a relational network.
Bridging social capital, on the other
hand, was conceptualized as resources
accessed through relational networks
outside one’s immediate social milieu.
Bridging social capital, the type we
focus on in the present article, is not
necessarily reciprocal, but more often
depends on informal communication,
social networks, and general relational
trust, such as that found between
coworken;, parents and teachers, or
broad-based coalitions and organiza-
tions. Bridging social capital connects
socially heterogeneous groups, and is
widely understood to have extensive
benefits accruing to the individual;
perhaps Putnam’s most widely cited
finding was that joining a social organi-
zation reduces one’s chance of dying
in a given year by as much as half!
A n u m b e r of researchers have
found that social network formation in
VouJME 153, No. 3, 2008 AMERICAN ANNALS OF THE DEAF
DEAF EDUCATION AND BRIDGING SOCIAL CAPITAL
school—or the failure of such net-
works to form—is strongly associated
with student attainment and success,
particularly for students who are not of
the majority (G. Cohen & Steele, 2002;
Stanton-Salazar, 1997,2001; Valenzuela,
1999)- And it Is during the school years
that critical social networks are formed
by deaf students—regardless of com-
munication modality.
In 1992, the U.S. Department of Ed-
ucation issued a guidance paper recog-
nizing just this reality. The guidance
strongly urged that school-based pro-
grams for deaf and hard of hearing stu-
dents plan for the “social, emotional,
and cultura! needs [of deaf students],
including opportunities for peer inter-
actions and communication” (para.
10). Clearly, some sense has existed at
the national level that opportunities
for socialization in school play a posi-
tive role in the education of deaf chil-
dren. One of the major theories driving
the guidance from the Department of
Education was that positive socializa-
tion could lead to the development
of useful individual-level social capital
(Everingham. 2001). We could not
agree more.
We believe that the conscious, delib-
erate promotion of bridging social
capital among deaf youth is one of
the most critical needs in deaf educa-
tion today.
Further, we believe that the need
for the deliberate promotion of such
social capital among deaf youth cuts
across seemingly unbridgeable divides
within the field. After all, much more
important to each individual than com-
munication style or cochlear implant
status are the real-world outcomes at-
tained by each deaf child: finding and
keeping friends, getting a job, connect-
ing witb community resources, going
to college, and having a rich and re-
warding recreational or family life.
We believe that, for deaf children,
tbis conception of bridging social cap-
ital as a valuable resource can be help-
ful in the promotion of positive
school and life outcomes, Specifically,
increased levels of bridging social cap-
ital have been associated with
• increased trust, broader social
networks, and stronger norms
of reciprocity (Bronfenbrenner,
Moen, & Garbarino, 1984)
• lower teen pregnancy and high
school dropout rates (Sampson,
Morenofî, & Earls, 1999)
• fewer teenagers involved in vio-
lent crime, homicide, or suicide
(Limber & Nation, 1998)
• fewer behavioral and emotional
problems (Runyan et al., 1998).
• greater scbool attainment and
achievement levels (Putnam,
2000)
• increased parental engagement
in scbools (Coleman, 1988)
As James Coleman and Thomas
Hoffer (1987) pointed out, one cannot
understate “the importance of tbe em-
beddedness of young persons in tbe
enclaves of adults most proximate to
them, first and most prominently tbe
family and second, a surrounding com-
munity of adults” (p. 94). Given tbat
many deaf cbildren experience tbeir
scbool as a kind of “second family,” tbe
urgency of building social capital witb
tbem becomes perhaps even more
significant.
We should also note that the recent
proliferation of eariy-age cochiear im-
plant use is not yet well studied or un-
derstood; it may be tbat these deaf
students who have received implants
are able to gain access to various levels
of capital in both the hearing anä Deaf
worlds. Some excellent recent field-
work examining the socialization of
deaf students who have cochiear im-
plants—^in particular, Bat-Cbava and
Martin (2002), Bat-Chava, Martin, and
Kosciw (2005), and Christiansen and
Leigh (2002)—has suggested tbat
implants may belp improve deaf stu-
dents’ communication and socializa-
tion skills. As well, there is some
international evidence tbat the his-
toric communication dicbotomy (oral
vs. manual) faced by families and in-
stitutions may not be absolute or per-
manent, and tbat families may be
becoming more pragmatic than ideol-
ogy driven. Gunilla Preisler (2007) has
noted rising demand among cochiear
implant users for rigorous instruction
in signed language systems in a major
longitudinal study of deaf cbildren
with cocblear implants in Sweden.
Kristina Svartholm (2007), exploring
the same trend, indicated that
parents of children with cochiear im-
plants seem to be choosing schools
with a signing setting to a larger ex-
tent than before. These parents want
their children to develop bilingual-
ism in Swedish (spoken and written)
and Swedish Sign Language . . . . The
special schools are now seeing a
number of older students who have a
greater need for sign language than
first expected when their parents
chose local school placement among
hearing children, (p. 137)
The explanation offered by Preisler
(2007) and Svartholm (2007) echoes
tbat of Wald and Knutson (2000), wbo
found that deaf students, with or witb-
out implants, place extremely bigh
value on bicultural identities—tbey
will always be deaf, but want access to
as much information about tbe deaf
and bearing worlds as possible. Not
anywbere near being tools that pro-
vide perfect access to auditory input,
and far from reducing demand for
access to a rich Deaf culture, it may
be tbat cochiear implants provide a
new starting point for families consid-
VoiUME 153, No. 3, 2008 AMERICAN ANNAJ.S O F THE DEAF
ering communication options, begin-
ning not with the current either/or di-
chotomy but with much more robust
discussions of when and how.
Svartholm’s (2007) study of Swedish
schoois for the deaf, though difficult to
generalize to the United States, makes
a forceful argument for the promotion
of bridging social capital with deaf stu-
dents. Using the concept of linguistic
domains (Fishman, 1965,1972), Svarth-
olm points out that language develop-
ment takes place across a wide variety
of settings—from informal, relatively
simple family and friendship settings to
the more formal and complex settings
in academic study or professional life.
She argues that promoting success
among deaf students, with and without
cochlear implants, means providing ac-
cess to the vocabulary’ and norms of
the widest possible variety of linguistic
domains; we provide a number of sug-
gestions for doing so in the American
context below.
Further, there is at least some evi- Promoting the Formation Improve Ties Between It just seems to me that there’s so In what is perhaps the most disap- deaf education, schot)ls and prfigrams Instead, the deaf education system .uMiî 153, No. 3 . 2008 AMERICAN -S OF THR DFAF DEAF EDUCATION AND BRIDGING SOCIAL CAPITAL nity as well. Right now, such options Increase Deaf Students’ Access Because residential schools for the ter-school hours (Cohen, 1994). Yet re- We see vast reserves of valuable so- Bring Parents of Deaf source Centers, or CPRCs). Each state We feel that increasing the access VOLUME 153, No. 3 , 2 0 0 8 AMERICAN ANNALS OF THE DEAF Support Deaf Students’ To return to the story that began the play, their identities, and their “fit” in Better Prepare Deaf Children academic preparation and stronger To this end, we believe that the re- Finally, a great deal more must be VouiMi-: 153, No. 3 , 2 0 0 8 AMERICAN ANNAI.S OF THK DFAF DEAF EDUCATION AND BRIDGING SOCIAL CAPITAL Everingham, C. (2001). Reconstituting commu- DEAF EDUCATION AND BRIDGING SOCIAL CAPITAL
dence given by both Preisler (2007)
and Svartholm (2007) that students
with cochlear implants struggle to
form peer or adult relationships in
school through spoken language,
and that many cochlear implant users
(and their family members) rely on
signed languages for detailed or ab-
stract information, and for the cre-
ation and sustenance of friendships
in and outside tif school. Though
Preisler and Svartholm’s studies did
n
of Bridging Sociai Capitai:
Some Recommendations
Start at the Secondary Level
There is little cause for compiacenc>’ at
any program, level, or school for deaf
children, regardless of structure or stu-
dent composition. But since bridging
social capital is particularly vital for stu-
dents making the transition out of sec-
ondary school and into the new (and
often tjuite unfamiliar) wt)rlds of col-
lege, work, or other indepentient living
situations, we think it most appropri-
ate to begin at that level (Briggs, 1997).
Secondary programs should seek to
bridge the divide between colleges and
their students, and employers and
their students, as early as possible.
Schools and Programs
for Deaf Children
Currently, many parents and families of
deaf children face extensive either/or
decisions about how their children will
be educated—often from very early
ages. One parent involved in rhc Na-
tional Parent Project and Survey ex-
pressed a sentiment common among
those trying to navigate the currently
near-labyrinthine systems of services
for deaf children:
many people, you know, that have in
thtir own mind what is the right way
to educate or the right method of
communication and that’s part of
what they’re tiying to pass on to par-
ents . . . instead of making something
available and saying, “OK, these are
the things that are available, these are
the things that are used, and this is
where you can find out about them.”
(Meadow-Orlans, Mertens, & Sass-
I.ehrer, 2003, p. 22)
pointing feature of the current era of
are often set up in direct competition
with each other for deaf students—in
what is often widely understood to be
a struggle for survival. Traditional res-
idential schools for the deaf, for ex-
ample, have often been unable or
unwilling to include students with
cochlear implants—or to develop new
programming that meets their needs,
just as local public school districts
have historically struggled to educate
deaf students who use ASL (Chris-
tiansen ik Leigh, 2002; Francis, Koch,
Wyatt, & Niparko, 1999; Johnson,
2004). All too frequently, schools do
not work together to construct an ap-
propriate range of educational op-
tions for children. Instead, schools
and programs have frequently insisted
on “package deals” in which students
and families must pick residential, day,
or inclusive education programs sepa-
rately and exclusively. This problem,
we fear, has only been accelerated by
the recent rise of inclusion and early-
childhood cochlear implantation—
both of which could antl shoiiki be
stimuli for the creation of new pro-
grams, and new cooperation be-
tween schools—but have all too
often devolved into unhelpful strug-
gles to maintain the status quo in the
face of profoundly changing student
populations.
needs to develop rf)bust placement
options that, for example, allow deaf
children to get solid academic prepa-
ration in one placement and develop
strong social and relational ties to
deaf peers and adults around them,
perhaps in another placement. As
Svartholm (2007) indicates, students
with cochlear implants may need ex-
pert speech and language services in
one setting and academic instruction
in another, while their families may
want their children to be able to con-
nect with a robust ASL-using commu-
are difficult, if not entirely impossible,
for families to construct. Schools and
programs for deaf children absolutely
must commit to forging new relation-
ships (and new flexibility) built less
around institutional ideologies or pro-
grammatic mandates and more on a
commitment to promoting the best
possible outcomes among deaf chil-
dren and families.
to Working Deaf Adults
The American Deaf community has
long supported increased access for
deaf students to Deaf adults, who are
seen as both skilled communication
partners and positive role models. Ac-
cess to Deaf adults in the context of
school is thought to combat the isola-
tion often felt by the deaf student in
traditional public schools, and can
also provide a kind of positive “role
model” for the residential deaf stu-
dent. Perhaps just as important, ac-
cess to Deaf adults can help deaf
students form relational networks by
expanding the number and type of
people deaf students know and are
able to interact with—in a sense, by
facilitating social capital formation
(Padden & Humphries, 1988, 2005).
Social capital, as we know, is to a
large extent driven by opportunities
to communicate and form relational
networks.
deaf employ much larger numbers of
deaf people than do traditional public
schools (Janikowski, 1997), increasing
deaf students’ access will be an easier
task for residential schools for the deaf
than for inclusive education programs
or oral schools. Further, deaf students
attending residential schools often
have deaf adult activity supervisors,
coaches, and residence hall advisers to
whom they can have access during af-
cent enrollment declines at residential
schools nationwide have threatened
their very existence, and many have
closed their doijrs entirely (Motares,
2006). We believe it would be tragic for
deaf children if these institutions did
not find ways to reinvent themselves,
ciuickly, while better meeting the
needs of a rapidly changing population
of deaf children. Schtxils and programs
that employ large numbers of deaf
adults must reach out to other schools
and programs, of all types, and de-
velop relationships with the pro-
fessionals and children who do not
necessarily participate in classes within
their walls.
cial networks at residential schools for
the deaf, and in day schools or pro-
grams for deaf children that employ
sizeable numbers of deaf adults. It is vi-
tal, we believe, for deaf children of all
sorts to have access to these deaf
adults—and there are a number of
ways the logistics could be managed.
From after-school, weekend, or sum-
mer programming, to coteaching,
guest lecturing, career fairs, and job
shadowing, a full range of options ex-
ist that could expand the contact deaf
students have with deaf adults. Here,
creativity and a willingness to over-
come traditional boundaries are ab-
solutely needed—and can only pay
dividends in the ongoing fight against
the isolation so prevalent among deaf
youth.
Children Together With
Other Parents
Increasing parental engagement in ed-
ucation is an explicit goal of the Indi-
viduals With Disabilities Education Act.
One mechanism for doing so is Parent
Training information Centers (PTIs:
also known as Community’ Parent Re-
has at least one such center. PTIs are
funded under IDEA, and their mission
includes educating and connecting
parents of students with disabilities, in-
cluding students who are deaf. Yet
many parents of deaf children still have
limited access to other parents of deaf
children (Hintermair, 2006; Luterman,
1999: Luterman & Kurtzer-White, 1999;
Meadow-Orlans et al., 2003; Tolland,
1995). It also seems likely that many
parents of deaf children do not have
strong ties to traditional parent-group
structures from which they and their
children could benefit—though this
has yet to be studied to any extent;
an emerging area of interest will be
whether and how well parents of deaf
students in inclusive settings are inte-
grated into the parental networks of
their schools, whether disability fo-
cused or otherwise.
that parents of deaf children have to
traditional parent groups could be ex-
tremely valuable. For example, recent
research shows that extensive edu-
cational benefits accrue from the re-
lational ties parents are able to forge
among themselves (Kahlenberg, 2003;
Rothstein, 2004). Parental group par-
ticipation has been found to raise the
educational aspirations and grade
expectations of parents for their chil-
dren and to increase parental auton-
omy and perceptions of support,
parental emotional .support for their
children, available resources and learn-
ing experiences fijrchildren, and direct
parent participation in school activi-
ties (Rosenzweig, 2001). Further, the
greater the interaction parents of deaf
children can have with each other, the
greater the likelihood that families will
gain access and exposure to a variety
of programming, educational, and
technical supports that are uniciue to
the needs of their children.
Participation in Activities
of All Types
One of the most prescient lessons of
current trends toward inclusion, and of
rising cochiear implant use among deaf
chiklren, is that many deaf children
feel isolated from their peers, and from
the adults who surround them—even
tliough hearing lo.ss seems not to be
the overriding factor in their isolation
(Cappeli, Daniels, Durieux-Smith, Mc-
Grath, ¿c Neuss. 1995; Scheetz, 1993;
Stinson & Kluwin, 1996; Tvingstedt,
1993). This is damaging at a number of
levels, particularly since it is known
that student participation in activities is
a major predictor of positive school
outcomes {Kluwin, McKjres, & Gaus-
tad, 1992; Stewart & Ellis, 2005; Stinson
& Antia, 1999). Social isolation is, by
definition, one i)f the major barriers to
.social capital formation of all kinds.
Conscious and deliberate planning for
deaf student participation—and delib-
erate recruitment of deaf students by
clubs, organizations, and w(jrk sites
that offer internships or job-shadowing
opportunities—can and should help to
combat such isolation. Some mecha-
nisms to do this may be as simple as
|’)roviding after-school busing so that
students can get home, identifying and
recruiting parents or other adults to
coach or lead groups, or providing
technical support to inclusive educa-
tion programs that want to include
deaf students in their activities.
present article: One of the most pro-
found responsibilities shared by par-
ents and educators of deaf children is
to remove the isolation that many of
these children feel—from adults, from
their peers, and from the rich and vi-
brant hearing and deaf wodds of which
they can he members. As children
grow and mature, it is common for
them to wonder about the roles they
the varieties of deaf and hearing wodds
to which they will have access. Deaf
children need access to hearing and
deaf adults alike; it is a lonely world for
anyone to feel like “the only one” of
any type—and with ever-increasing
numbers of deaf professionals, ath-
letes, technicians, and leaders, it would
be a lost opportunity- not to connect
them with youth. A gotxl example of
progress towarcis this goal is the re-
cently created Rochester After School
Academy (RASA), at the Rochester
School for the Deaf, which brings
together deaf children from all over
the city for academic, recreational,
and social after-school activities 4 days
per week. (Information on RASA can
be found at http://www.rsdeaf.org/
enhancement academic.as p.)
for College and Work
Overall, deaf studcnt.s in the United
States are underprepared academi-
cally for college (Menchel, 1995) and
work (Rusch & Chadsey, 1998), and
there are large cultural gaps between
the K-12 world and postsecondary or
vocational life (Neumark, 2007). Deaf
adults are consequently underem-
ployed. Deaf adults in the United
States demonstrate lower labor force
participation and education attain-
ment rates than their hearing coun-
terparts—even those with similar
academic or vocational skills (Cooper,
2003; Crammatte. 1987; I.ane, 1992).
We believe that one of the overriding
factors in deaf adult underemploy-
ment has its roots in low levels of
academic achievement among deaf
children (Leigh ik Power, 2004) and a
lack of structural and relational conti-
nuity between secondary education
and the (often quite different) worlds
of college and work (Bowe, 2003;
Punch, Hyde, & Creed, 2004). Better
transition programming are crucial
components in increasing the social
capital of deaf children. The opportu-
nities schools have to build relational
network.s—and, consequently, social
capital—among deaf students will re-
main stunted until academic achieve-
ment is greatly increased.
form efforts of the No Child Left Be-
hind Act (RL, 107-110) are a positive
first step. While there are justifiable
concerns about both current levels of
resources and capacity (see Moores,
2005a), we feel that a focus on data-
driven decision making, coupled with
a prioritization of academic outcomes,
has long been missing from the field—
and can ultimately only help deaf
students. To that end we endorse the
suggestions of Moores (2005b), who
pointed out a need for more consis-
tent assessment and reporting of deaf
students’ academic achievement na-
tionally, improved and mijre consis-
tent training of teachers of the deaf
(and, for that matter, certification re-
quirements of teachers (jf the deaf),
more (and greater dissemination of)
research on “best practice” with deaf
children engaged in challenging curric-
ula (Marschark, 2001), and improved
and more consistent interpreter train-
ing (La Bue, 1998).
done to strengthen the ties between
K-12 schools and the colleges or em-
ployers with which deaf students ma-
triculate. Among the most uncertain
times in a student’s life, the initial
postsecondary years yield decreased
contact with supportive adults, de-
creased legal protections, and often
decreased influence of immediate
family and caretakers (Steere, Rose, &
Cavaiuolo, 2007). Without improved
ties between institutions, even the
best transition planning in the world
can fall on the shoulders of students
alone, who may see continued chal-
lenging academic work or appropriate
employment as little more than a
long, uncertain (and potentially quite
lonely) battle,
None of these reforms will come
quickly or cheaply. But the focus on
student outcomes is a critical first step,
and one that can help students build
not just academic skills but also what
we believe to be vital social capital that
will help them as they look to lives
lived—in large part—beyond the walls
or years of formal K-12 instruction.
Conclusion
We believe that successful social capital
formation is deeply important for deaf
students, since the barriers they face
on departure from school—whether
to college, work, or community life—
are on average much greater than
those feced by their hearing peers. So-
cial capital can buffer the negative im-
pact of discrimination and ameliorate
some, if not all, of the challenges stu-
dents face when transitioning out of
the relatively sheltered confines of
K-12 schcH)ling and into the real world.
To the extent that a huge number of
deaf graduates have struggled in
higher education or employment, the
vast majority of programs and schools
for deafchildren, whatever their insti-
tutional characteristics, have a great
deal of room to grow.
Perhaps the most fundamental idea
is that schools—in whatever capacity
and programming they provide—must
deliberately promote and maintain re-
lational networks on as wide a scale as
possible. Schools should, we believe,
seek to link deaf children to the com-
munities that surround them, deaf and
hearing alike—and should do so with
the understanding that there are tangi-
ble benefits for their students in doing
so. From a social capital standpoint,
tlie formal structures of the school ex-
perience—whether residential, day, or
tradititinal public (or, for that matter,
exclusively oral, strictly ASL, cochlear
implant-focused, or something else
entirely)—matter less than the rela-
tional ties the school is able to help
forge between students and the adults
who surround them.
We believe that the promotion of
social capital formation among deaf
students can help unify and direct the
development of a frequently frac-
tious field. By emphasizing student
outcomes, and by constandy remind-
ing educators to focus on what mat-
ters for students (and the adults they
will one day become), social capital
theory provides bridges between
philosophies and methodologies that
can seem exclusive, often to the inad-
vertent detriment of our deaf students.
Given rapid changes in demography
and technology, a valuable opportu-
nity now exists to reinvent deaf edu-
cation entirely over the next few
years—years that educators can and
should shape in the direction of solid
academics, better ties between schools
and programs, and strong and lasting
ties between deaf students and the re-
sources in the communities that sur-
round them.
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