





































Authors
LAUREN A. WENDLING 
Doctoral Candidate, Higher 
Education, Indiana Universi-
ty Bloomington

KATIE BROOKS 
Professor of Education, But-
ler University

Belle* 
Community Member/
Scholar

Aladdin* 
Community Member/
Scholar

Jerry* 
Community Member/
Scholar

Sunshine* 
Community Member/
Scholar

Joseph* 
Community Member/
Scholar

Robert* 
Community Member/
Scholar

Angelina* 
Community Member/
Scholar

Mara*j 
Community Member/
Scholar

Anne* 
Community Member/
Scholar

* The names of the co-re-
searchers throughout both 
the main text and authors 
document are all pseud-
onyms in order to protect 
the identities of the co-re-
searchers, per their request. 

LAUREN A. WENDLING, KATIE BROOKS AND SCHOLARS 

Exploring the Lives, 
Communities, and Social 
Circles of Individuals 
with Intellectual/
Developmental Disabilities 
through Photovoice 

abstract
Historically, research on vulnerable 
or marginalized groups, such as 
persons with intellectual or devel-
opmental disabilities (IDD), has fo-
cused on studying such populations 
rather than meaningfully engaging 
them in the research process.  This 
Indianapolis-based Photovoice 
study gives voice to individuals with 
IDD by involving them in communi-
ty-engaged research and shining a 
light on the issues that they iden-
tified as needing attention in their 
communities.  Nine individuals with 
IDD volunteered to serve as co-re-
searchers, exploring their lives and 
communities through photography.  

Over a period of six weeks, the nine 
co-researchers took photos of their 
communities and participated in 
group discussions to identify com-
mon issues. Discussions about the 
co-researchers’ photographs uncov-
ered important themes regarding 
social relationships, community 
participation, and independence 
that led to action in the form of a 
letter writing campaign to local and 
national policymakers and a public 
art show to display and discuss their 
photography.  

Keywords: Intellectual and De-
velopmental Disabilities (IDD), 
Photovoice, Community-Engaged 
Research  

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study background 
Within the realm of community health and civic 
engagement, there is increased recognition that the 
concepts that inform society’s philosophical and 
theoretical approaches to community engagement 
and social inclusion have been based on inade-
quately developed ideas and research (Bachrach & 
Abeles, 2004).  Scholars note that it is important for 
research to be inclusive of vulnerable populations 
whose issues are not traditionally addressed within 
the arena of community involvement (Jurkowski 
& Paul-Ward, 2007).  Not only should research 
strive to include such vulnerable populations as 
research subjects, but rather as equal partners 
in the research process.  Historically, vulnerable 
populations, specifically individuals with intellec-
tual or developmental disabilities (IDD), have had 
their voices and personal experiences represented 
through research that does not engage them as 
co-creators of knowledge, but rather as passive sub-
jects upon which research is completed.  Unfortu-
nately, it is still somewhat rare for studies to engage 
individuals with IDD in research that informs and 
benefits their own local communities. 

While there is much research that focuses on the 
type of community interactions and social relation-
ships of individuals with IDD (Amado, Stancliffe, 
Mccarron, & Mccallion, 2013; Hill & Dunbar, 2003; 
McCarron et al., 2011; Taylor, 2000; Verdonschot, 
DeWitte, Reichraft, Buntinx, & Curfs, 2009), there 
is a need for research that meaningfully engages 
community members with IDD as co-researchers 
and active participants in the process.  Further, 
there is a need for research involving individuals 
with IDD who themselves advocate for and take 
steps to bring about change in their local communi-
ties. This study employed the Photovoice method-
ology to do just that.  After taking a deep look into 
their communities through guided photography 
and discussion, nine individuals with IDD actively 
engaged in a letter writing campaign and art show 
to start a conversation about self-identified issues in 
their communities and bring about change. 

methodology 

Photovoice 

Photovoice is a research methodology developed 
by Caroline Wang and Mary Ann Burris that is 
grounded in the fundamental principles of social 
justice, respect for personal autonomy, promotion 
of societal good, and the avoidance of harm (Wang, 
2006; Wang & Burris, 1997).  As described by Wang 
and Burris (1997), Photovoice is:  

A process by which people can identify, repre-
sent, and enhance their community through a 
specific photographic technique … Photovoice 
has three main goals: (1) to enable people to 
record and reflect their community’s strengths 
and concerns, (2) to promote critical dialogue 
and knowledge about important issues through 
large and small group discussion of photo-
graphs, and (3) to reach policymakers. (p. 369) 

By encouraging co-researchers to capture and 
discuss photos they have taken in their own envi-
ronments, Photovoice enables individuals to act as 
catalysts for change within their own communities. 
This stands in stark contrast to having research 
participants answer formulated questions that have 
been developed by outside researchers. Photovoice 
encourages co-researchers to express their real-life 
experiences through photography and empowers 
them to express their needs and become actively 
involved in decisions affecting their lives (Wang, 
2006). Photovoice, and this study, are fundamen-
tally grounded in the belief that successful and 
effective community-engaged research is done with 
community members rather than on community 
members. 

Co-Researchers 

To ensure the goals of this study were aligned with 
the needs and desires of the disability community, 
nine individuals with IDD were identified to serve 
as co-researchers and guide the study from begin-
ning to end.  Each of the nine co-researchers live 

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with an IDD and were between the ages of 18 and 
40 during the time of the study.  Six of the co-re-
searchers identified as female, three identified as 
male.  Eight identified as Caucasian and one as 
African American.  The co-researchers’ names in 
this writing are all pseudonyms in order to protect 
their identities.   

The co-researchers in this study were identified via 
snowball sampling with the assistance of two initial 
co-researchers who worked in conjunction with 
the primary researcher to identify seven addition-
al co-researchers.  The primary researcher had 
been involved with a local non-profit organization 
serving individuals with IDD in a volunteer capaci-
ty for over three years and had formed friendships 
with many individuals within the organization.  
Prior to the study, the primary researcher engaged 
in many conversations with the two initial co-re-
searchers who voiced frustrations about issues in 
their own communities (public transportation, job 
opportunities, etc.).  After many similar, frustrated 
conversations, the primary researcher proposed 
to the two initial co-researchers the idea of using 
Photovoice to show others what it is like living with 
IDD in Indianapolis.  The two co-researchers liked 
the idea, especially the ability to share their work 
with others, and agreed to participate.   

To identify additional co-researchers, the two 
initial co-researchers and the primary researcher 
employed a snowball sampling technique.  The two 
co-researchers identified other friends of theirs 
with IDD who they thought would like to partic-
ipate.  Prior to the study, the primary researcher 
knew six of the nine co-researchers through her 
involvement in the non-profit organization.  The 
study was intentionally capped at ten total re-
searchers, in an effort to more easily facilitate a 
balanced group discussion (Wang, 2006).  Upon 
agreeing to participate, each co-researcher and 
their legal guardian (if required) were provided 
detailed information about the study and the 
voluntary nature of participation. Co-researchers 

provided their consent to participate.  All were giv-
en the ability to remove themselves from the study 
at any time.  

Use of the term “co-researcher” is intentional to 
highlight the depth of involvement of all nine indi-
viduals with IDD in research.  As co-researchers, 
all nine individuals assisted and/or led the follow-
ing aspects of the study: 

• Participant recruitment 

• Identification of study’s primary questions to 
be explored through Photovoice 

• Data collection 

• Data/theme validation 

• Presentation of findings via letter writing cam-
paign and public art show 

• Guiding Questions 

Most research that employs the Photovoice meth-
odology uses a similar process for data collection 
and analysis (Wang, 2006).  After identifying and 
obtaining consent from all nine co-researchers, the 
primary researcher gathered the research team for 
their first of six face-to-face meetings.  During the 
first meeting the primary researcher led a collabora-
tive discussion where the team identified three pri-
mary questions around which to center the study.  
Acknowledging shared frustrations about various 
aspects of their communities, the co-researchers, in 
conjunction with the primary researcher construct-
ed the following questions to guide the study and 
the co-researchers’ photography:  

The co-researchers 
saw themselves not only 

as advocates for individuals with 
disabilities, but as advocates for their 

communities as a whole. 

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1. What do you like about where you live? 

2. What do you dislike about where you live? 

3. What would you like to change about your  
community? 

After identifying the guiding questions, the primary 
researcher led a discussion on cameras, power, and 
photography ethics, explaining the ethical require-
ments all co-researchers had to meet in order to take 
part in the research (obtaining permission when 
taking someone’s photo, not sharing their photos on 
social media, etc.).  Once all researchers were clear 
on the study’s guiding questions and timeline, they 
returned to their communities to take photos.  

Photo Sharing and  
Group Discussions 

Throughout a period of six weeks, the research team 
met three additional times, each time following a 
week of taking pictures in community.  In total, the 
co-researchers took almost 300 photographs over 
the six weeks.  Although photography was used as 
the primary method by which the co-researchers 
identified community issues, the photos them-
selves are not the primary source of data within 
a Photovoice project.  The group discussions that 
arise out of the sharing of photos are of principal 
importance and serve as the study’s primary data 
(Wang, 2006; Wang & Burris, 1997).  Thus, the 
three in-person group discussions held after a week 
of community-engaged photography by the co-re-
searchers held significant value.  The co-researchers 
brought to each in-person group discussion their 
digital photographs, sharing them on the projector 
for all to see.  Each in-person discussion followed 
the same general outline: 1) co-researchers shared 
three to five photos with the group that they wanted 
to discuss, 2) each co-researcher provided context 
for each photo and explained its significance to the 
group, and 3) discussion ensued based on the select-
ed photos shared (Wang, 2006).  Each of the three 
group discussions lasted roughly two hours.   

The three group discussions were loosely structured 
and were guided primarily by the co-researchers’ 
interests, questions, and concerns.  Rather than 
the primary researcher asking each co-research-
er to respond to preconceived questions, all were 
encouraged to talk with one another, ask and 
answer each other’s questions, and exchange ideas 
and anecdotes, acknowledging others’ points of 
view.  The primary researcher’s role within each 
discussion was to encourage dialogue built upon the 
study’s guiding questions and what the co-research-
ers would like to see in terms of social change.  To 
allow for the most natural setting, the discussions 
were not recorded and were held over snacks and 
non-alcoholic drinks.  The primary researcher 
took extensive notes during each group discussion 
which became the study’s primary data.  Following 
three rounds of photography and discussions, the 
research team met an additional time to debrief the 
prior meetings and generate plans for social action.   

Identifying Themes across the Data 

The primary data collected and analyzed in this 
study is the extensive notes taken during the 
research team’s three group discussions.  Analy-
sis of the group discussions is outlined below in 
detail.  However, as the co-researchers’ photog-
raphy is what initiated all discussions, a summa-
ry of the co-researchers’ photos is described in 
Appendix A.    

While all co-researchers actively participated 
in formulating the study’s guiding questions, 
photography, and group discussion, the primary 
researcher led the analysis of the data, identi-
fying themes across the group discussions and 
presenting them to the research team for feed-
back, corrections, and ultimately validation.  The 
primary researcher’s analysis of the data occurred 
in these steps: 1) Data exploration, review, and 
memoing; 2) Open coding; 3) Axial coding; and 4) 
Selective coding, data reduction, and development 
of overall themes. 

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The data exploration, review, and memoing phase 
included a review of all notes from a holistic per-
spective with the goal of understanding the breadth 
and scope of the data.  This general, more explor-
ative review helped to identify patterns within the 
data (Glaser & Strauss, 1967; Schatzman & Strauss, 
1973).  Open coding, or the development of initial 
themes occurred after the data exploration and 
memoing phase (Creswell, 2007; Strauss & Corbin, 
1990).  In this phase, emerging themes and pat-
terns were identified, illustrating the major catego-
ries of the data.  After initial codes were identified 
through open coding, axial coding was employed to 
build out and clarify original ideas and categories.  
Focused axial coding involved the creation of addi-
tional codes and sub-codes focused around specific 
ideas and concepts, allowing for more in-depth 
understanding (Strauss & Corbin, 1990).  Selective 
coding followed the processes of open and axial 
coding with the goal of reducing superfluous data 
and clarifying themes from the connected catego-
ries of codes (Stake, 2010; Strauss & Corbin, 1990).   

Co-researchers were involved in the validation of 
themes throughout the process of analysis.  Follow-
ing the primary researcher’s initial analysis of the 
data, the research team convened and the primary 
researcher shared the emerging themes identified.  
The co-researchers provided feedback, suggest-
ing edits and additions to the initially identified 
themes.  Within a two-hour work session, the 
research team finalized the analysis, agreeing to the 
themes detailed in the next section.

emerging themes of focus 
group discussions 
During the group discussions the co-researchers 
enjoyed sharing their photos and stories about 
when they felt empowered.  The co-researchers 
found it important to discuss issues facing their 
communities that they believed needed to be 
addressed to improve the lives of all Indianapolis 
residents, not just those with disabilities.  While 
many discussions centered on the fact that life is 

oftentimes more difficult for those with IDD, the 
co-researchers saw themselves not only as advo-
cates for individuals with disabilities, but as advo-
cates for their communities as a whole. 

Findings are divided into four distinct themes that 
were most discussed during the group meetings: 
1) social circles and friendship, 2) integrated and 
meaningful environments, 3) social identity, and 
4) community change.  Discussion of these topics 
arose from the photography shared by the co-re-
searchers in response to the three aforementioned 
questions constructed to guide the study and the 
co-researchers’ photography. 

Social Circles and Friendship 

“DSI Conference is National Down Syndrome 
Congress and you meet a lot of people with Down 
syndrome, they have talent show.  I have hun-
dreds of friends there.” – Belle  

The issues of friendship, social circles, and com-
munity were all discussed in great detail among the 
co-researchers.  Three major factors contributing 
to the size of one’s social circle were identified: hav-
ing the time to spend with friends, having access 
to quality transportation, and the ability to live 
independently.  Conversely, the increasingly busy 
lives of friends, not being able to use public trans-
portation, and/or living at home with one’s parents 
limited the social interactions of the co-research-
ers, which they saw as problematic.   

The co-researchers’ social circles were primarily 
comprised of family members, staff, friends (with 
and without IDD) and co-workers.  The majority 
of the co-researchers did not have a preference 
when it came to being friends with people with or 
without IDD.  However, one third of the co-re-
searchers preferred to have friends with IDD.  
Aladdin explained, “I have more fun with [peo-
ple with disabilities].  They understand,” (Focus 
Group, June 30, 2015).  Though most of the co-re-
searchers did not distinguish friends as having or 

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not having a disability, most of their social circles 
were comprised of other friends with disabilities, 
begging the question of choice or necessity.   

In a 2011 study, McCarron et al. found that 67 
percent of individuals with IDD did not believe it 
was difficult to make friends with new people.  The 
co-researchers’ sentiments echoed McCarron et al.’s 
findings, noting that most did not believe making 
friends is particularly difficult.  Joseph, discussing a 
holiday party his apartment complex recently held, 
explained that he was able to invite guests, but, 
“We couldn’t invite many people because they were 
too busy.  So, it was just us [residents with IDD]”. 
(Focus Group, July 7, 2015).  Aladdin added, “[My 
friend] she just have baby and her too busy to hang 
out.  I don’t see her no more,” (Focus Group, June 
23, 2015).  As the lives of their adult friends without 
IDD progress with marriage and children, those 
with IDD are often relegated to the back burner of 
friendship and are awarded social time when it is 
convenient for others. 

In addition to the busy lives and schedules of 
friends without IDD, the lack of sufficient or reliable 
public transportation compounded the issue of not 
being able to freely spend time with others.  The 
co-researchers found the lack of accessible, public 
transportation within Indianapolis very disappoint-
ing.  As not all of the co-researchers had driver’s 
licenses, the need for reliable public transportation 
was of utmost importance.  Without the ability to 
effectively move about the city, they had to rely on 
others to get them to and from work, social activi-
ties, and errands.  Robert stated, “Tuesdays are the 
only days I have staff, so that’s the only days I have 
rides.  I have to ask family and friends or try to use 
the [local public transportation system],” (Focus 
Group, June 16, 2015).  Joseph agreed with Rob-
ert’s frustrations and added, “The [public transpor-
tation system] equipment is sometimes faulty and 
doesn’t allow people with wheelchairs to get on it,” 
(Focus Group, June 16, 2015).  The inability to uti-
lize public transportation put a great strain on their 
independence and negatively affected how they are 
able to navigate their communities.  

Integrated and Meaningful  
Environments 

 “When I’m working I feel included.  I feel includ-
ed because I’ve been there two years and they 
know me and they know I work hard and I do a 
good job.” – Sunshine  

The co-researchers discussed their community and 
inclusive environments – places where they feel 
safe, valued, and empowered – at great length.  The 
co-researchers’ noted that many of the environments 
where they felt the safest were those where social 
inclusion and the integration of individuals with IDD 
was an explicit goal.  Aladdin spoke at length about 
his love of Special Olympics and how he is so proud 
to be an athlete, “I go to Indiana Special Olympics 
State Games.  I want people to know I go there and I 
an athlete.  I have fun there.” (Focus Group, June 16, 
2015).  Robert, a long-time participant in Best Bud-
dies has been paired in many friendships with indi-
viduals without IDD and recently attended a friend’s 
Fourth of July party, exclaiming, “It was really nice of 
[my friend] to invite me to her Fourth of July party 
this year,” (Focus Group, July 7, 2015).   

In addition to environments where the social inte-
gration of individuals with IDD is a priority, many 
co-researchers noted they felt most valued at work, 
interacting with co-workers or customers.  Many of 
the employed co-researchers enjoyed not only feel-
ing valued at work, but included and integrated into 
a professional community.  Jerry explained, “I feel 
great when I go to work because people know me 
by name.  When I see newcomers, I welcome them.  
I feel valued and plus I get paid there every two 
weeks.  I help with the household expenses,” (Focus 
Group, June 16, 2015).  In a similar vein, the ability 
to volunteer and utilize their talents to give back to 
others increased their sense of self-worth.  An-
gelina, who volunteered with the National Down 
Syndrome Society, recently won an award for her 
many contributions to the organization.  She proud-
ly stated, “I’m so happy I got this award.  I was the 
first top volunteer at the National Down Syndrome 
Society.  I am proud!” (Angelina, Focus Group, June 

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23, 2015).  Being seen beyond their disability, as 
productive members of society who contribute to 
the greater good, provided the co-researchers with 
the tools to live productive, happy, meaningful lives. 

In addition to environments where they felt valued, 
the ability to make their own choices was an issue 
the co-researchers believed impacted how secure 
and integrated they felt in the community. Being 
able to make choices for one’s self provided them 
not only with a sense of independence, but also 
self-worth.  They noted that for many with dis-
abilities, choice is often limited by someone else 
– a parent, staff, etc.  For the co-researchers, the 
concept of personal choice was most associated 
with one’s living situation.  Those who lived inde-
pendently felt they had the most freedom to make 
choices for themselves – how they spend their free 
time, who they associate with, etc.  Angelina said:  

I like to live at my apartment.  They have a lot of 
community events like a cookout, Bible study every 
Sunday, especially the garden I like to do.  Especial-
ly I like be independent and be on my own and with 
my boyfriend and my friends.  If you want to be in a 
group to watch movies or play pool and some card 
games, you can (Focus Group, June 16, 2015). 

Adding to Angelina’s sentiments, Sunshine agreed: 

My apartment is my own place.  There is no noise, 
I can watch whatever I want to watch [on the TV].  
My brother doesn’t come in and change the station.  
I grew up in a loud house and I like the quiet (Fo-
cus Group, June 16, 2015). 

Social Identity 

“I don’t like to fight.  I like to talk things through.  
I’m a lover, not a fighter.  I like sports, cars, and 
motorcycles.  I like attractive women.  I don’t like 
drama.” – Joseph  

In a 2011 study analyzing the social identities of 
individuals with IDD, Cameron found that the 
socially-generated identities of individuals are pri-

marily dependent upon one’s social organizations, 
the people who surround them, and the language 
used to define their social groups.  The co-research-
ers echoed Cameron’s sentiments and noted their 
disability is not generally how they define them-
selves, but rather what they like to do, with whom 
they associate, and the groups to which they belong.  
The majority of the co-researchers were actively 
involved in various community programs and sup-
ports specifically designed for individuals with IDD.  
However, when asked, none of the co-researchers 
identified first as an individual with a disability.  
Having a disability is but one characteristic that 
comes secondary to other personal traits such as 
a love of animals, a profession, or a family role.  
When asked to describe themselves, the co-re-
searchers gave a plethora of answers.  Sunshine 
noted, “I love horses and I’m a hard worker,” (Focus 
Group, June 16, 2015). Robert explained that she 
identifies as a hard worker, strong volunteer, and 
a student who went to college for two years at a 
local university (Focus Group, June 16, 2015).  All 
of the co-researchers understand that they have a 
disability, but it is not what ultimately defines them.  
Rather, it is other members of society that identify 
them first and foremost as someone with IDD.    

Through their discussions regarding disability and 
social identity, the co-researchers discussed their be-
lief that a physical or mental impairment is not au-
tomatically internalized as a negative trait by those 
who have IDD.  Rather, various societal structures 
and barriers that restrict the individual choice, in-
dependence, and adulthood of individuals with IDD 
appear to be the largest factors contributing to the 

This is particularly 
important for individuals with 

IDD, as they have traditionally been 
left out of such decisions and treated 

as subjects rather than co-investi-
gators, partners, and collaborators in 
research. 

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negative social identities of individuals with IDD.   
Disability identity, in social terms, is then defined 
as a socially constructed phenomenon by individu-
als without disabilities which is then imposed onto 
individuals with IDD.  As such, individuals with IDD 
are disabled by the physical and attitudinal barriers 
society constructs for them.  The societal barriers 
most frequently discussed among the co-researchers 
were childlike language and lack of adequate trans-
portation, resulting in them being seen not as adults, 
but rather as dependent childlike individuals. 

Community Change:  
An Agenda for Action 

When the co-researchers discussed what they saw 
as the most pressing issues in their communities 
they identified the following two issues as most 
needing attention: 

Public safety.  Collectively, the co-researchers 
identified public safety as one of the primary issues 
needing to be addressed in their communities to 
improve life for not only themselves, but for other 
citizens with and without IDD.  This included 
issues such as homelessness, gun violence, and 
accessible streets and sidewalks.  The fact that a 
great deal of the group’s conversations centered on 
how to improve the safety and inclusivity of their 
communities for all citizens illustrated their collec-
tive sense of pride, empowerment, and self-worth.  
When given the opportunity to voice their concerns 
and improve their communities, the co-researchers 
acted with a sense of agency which is unfortunately 
not always attributed to people with IDD.   

Empowerment and autonomy for individu-
als with IDD.  In addition to identifying areas of 
improvement in regard to public safety, the co-re-
searchers recognized two issues which could be 
improved to increase the freedom and autonomy 
specifically for individuals with IDD: more oppor-
tunities for employment and additional facilities to 
assist with independent living.  They noted that pos-
itive changes in these areas would improve the lives 

of individuals with disabilities by increasing their 
autonomy, empower them to be more independent, 
and in turn, increase their happiness and self-worth.   

One of the most discussed issues was the need they 
saw for meaningful and integrated employment op-
portunities for individuals with IDD.  Employment, 
they agreed, is one of the most significant factors 
aiding the construction of one’s positive social iden-
tity.  The majority of the co-researchers wanted to 
be given the opportunity to receive a pay check and 
contribute to society.  The ability to purchase things 
for themselves and pay rent were deeply satisfying 
for those who held jobs.  Angelina proudly stated, “I 
like my job.  I make people happy by cleaning locker 
rooms … I have my own name badge and business 
cards,” (Focus Group, July 7, 2015).  Unfortunately, 
not all of the co-researchers were employed.  Maraj 
was desperately seeking work: “It’s difficult to find 
a job.  I have ten years’ experience at McDonalds, 
but no job.  We need more jobs for people to make 
money!” (Focus Group, June 16, 2015).   

Just as having gainful employment helps create 
a positive social identity, so too does the abili-
ty to live life on one’s own terms.  For many of 
the co-researchers that meant being able to live 
independently, without the constant supervision or 
interaction with one’s parents.  Joseph proudly ex-
claimed, “I’ve lived alone since I was eighteen and I 
love it.  My parents don’t tell me anything!” (Focus 
Group, June 16, 2015).  Sunshine, who also lives 
independently, highlighted the importance of being 
able to do things for yourself, “It’s important to 
have a clean house.  It means you take care of your 
things and can do it by yourself,” (Focus Group, 
June 16, 2015).  Being able to support yourself 
and live independently, they believed, should be an 
option for all adults, with or without a disability.   

taking social action 
Arguably, the most important component to any 
Photovoice study is taking action on the issues 
brought to light during the research team’s discus-
sions as explored through their photography.  After 

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completing the three rounds of photography and 
group discussions, the research team convened to 
plan actionable steps toward making their voice 
heard to various community members and poli-
cymakers.  With any Photovoice study, the outlets 
and methods of sharing identified themes and 
photography vary depending on the team, the local 
context, and the ultimate goals of the project (Far-
ley, Brooks, K., & Pope, 2017).  In this study, after 
much discussion, the research team identified two 
ways to showcase their work and make their voices 
heard: a letter writing campaign targeted to indi-
vidual stakeholders at the local, state, and national 
levels; and hosting a public art show featuring their 
photographs to ignite community conversations.   

The research team believed mailing letters to 
community organizations, policymakers, and 
stakeholders on the local, state, and national levels 
coupled with a public display of their photogra-
phy would initiate discussion about the topics and 
issues they found most pressing in their commu-
nities.  To most effectively share their sentiments 
within the letter, the co-researchers agreed to 
highlight specific topics of interest which fell under 
the larger umbrellas of public safety and empow-
erment and autonomy specifically for individuals 
with IDD.  The letter, which was drafted and signed 
by the entire research team and sent to various 
stakeholders, is shared in full in Appendix B.   

In addition to the letter, the research team wanted 
to share their photography with the local Indianap-
olis community in hopes of initiating conversations 
similar to those they had within the group discus-
sions.  To do so, the primary researcher secured an 
exhibit space in the downtown area of Indianapolis 
to display a selection of the co-researchers’ photo-
graphs.  The exhibit space was provided for free, as 
the co-researchers’ display was held in conjunction 
with a fundraiser for a local nonprofit organiza-
tion that provides services for individuals with 
IDD.  The exhibit was held during “First Friday,” a 
designated monthly event where local artists and 
musicians publicly share their work.  Each co-re-

searcher identified three or four photos to display 
and discuss with attendees.  During the photo 
exhibit and within the letter to local and national 
policy makers, the research team discussed the 
need for safer communities where all citizens can 
feel comfortable, secure, and empowered.   

limitations 
Qualitative research, specifically that which em-
braces participation from a small percentage of the 
population being studied, lends itself to various 
issues limiting the scope and generalizability of such 
research.  In this study the research team was small, 
including only nine co-researchers.  While this small 
group included individuals of different genders, rac-
es, ages, socio-economic status, and disabilities, it is 
not an all-encompassing account of what it means to 
live with a disability in Indianapolis.  Although dis-
cussions were often driven by what life is like living 
with IDD, the type or severity of one’s disability was 
not the focal point.   Disabilities vary in terms of the 
severity, causes, and levels of support needed, and 
the input of the co-researchers was unique to their 
individual lives, disabilities, and social supports.   

implications for research 
and practice 
Although this study among Indianapolis communi-
ty members with IDD is limited in its generalizabil-
ity, it suggests that Photovoice can be successfully 
utilized to actively involve individuals with IDD to 
shape the decisions that influence their lives and 
communities.  Furthermore, this study exempli-
fies the need for including individuals with IDD in 
social programming, planning, and research.  This 
is particularly important for individuals with IDD, 
as they have traditionally been left out of such deci-
sions and treated as subjects rather than co-inves-
tigators, partners, and collaborators in research. 

This study had two distinct purposes: to involve 
individuals with IDD in community-engaged re-
search and to shine a spotlight on the issues facing 
Indianapolis, specifically issues of concern within 
the disability community.  Photographs taken by 

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the co-researchers, in combination with the 
discussions that stemmed from said pho-
tographs, illustrated what issues were of 
most importance to them: the need for more 
integrated and meaningful employment for 
individuals with IDD, additional opportu-
nities for individuals with disabilities to live 
independently, the necessity of a reliable and 
functional public transportation system, etc.  
Photographs and discussions also showed 
how the co-researchers are involved in their 
communities, the extensiveness of their social 
circles, or lack thereof, and how they are 
physically and socially integrated into larger 
society.  Future research should continue to 
include the perspectives of individuals with 
IDD to ensure the authentic representation 
of the disability community within research.  
Many of the themes which emerged from the 
co-researchers’ photographs, or lack of photo-
graphs, are worth exploring in further detail 
to better understand the connections contrib-
uting to the various issues the co-researchers 
saw as most prominent in their lives.   

This study inviting the perspectives of indi-
viduals with IDD in research suggests that 
Photovoice is not only an effective participa-
tory research tool to aid in the advancement 
of disability rights, but one that is much 
needed.  The use of photography and the 
primacy of the visual image coupled with the 
opportunity for individuals to express their 
real-life experiences through group discus-
sion provides individuals who are often not 
asked to share their opinions a platform to 
be heard.  Community members also are able 
to collect data through photographs in places 
where other, outside researchers might not 
have access.  This study demonstrated that 
Photovoice can foster the active participation 
of individuals with IDD in research while giv-
ing value and weight to their contributions as 
co-researchers, not research subjects.

appendix a 

Summary of the Co-Researchers’ Photographs 

The significance of place.  94 of all the photographs (32%) 
highlighted safe places the co-researchers identified as import-
ant to their lives.  The most prominent locations included their 
homes, serene spots within nature, religious places of worship, 
or unique locations they visited when travelling.   

The primacy of friends, with and without IDD.  59 
photos (20%) featured individuals who the co-researchers 
identified as friends.  The majority of co-researchers who took 
pictures of friends were those who either lived independently 
or were involved in various community organizations that 
provide opportunities for people with IDD (Special Olympics, 
Best Buddies, etc.) 

The importance of social activities and community 
participation. 53 photographs (18%) were taken when 
co-researchers were active in their communities.  Photos 
ranged from enjoyable social activities such as attending pro-
fessional sporting events, conferences, and summer camps, or 
while they were at their place of employment or volunteering 
in their community. 

Pride in the ability to live independently. 44 of all 
photographs (15%) highlighted many of the co-researchers’ 
apartments where they live independently without parents or 
siblings.  All of the co-researchers who lived independently 
expressed great pride in having the ability to do so.  The co-re-
searchers who lived with parents and/or siblings articulated 
their desire to live more independently and move out of their 
childhood homes. 

The low profile of staff and family members. Less than 
1% of all photographs taken were of the co-researchers’ family 
members or siblings.  Staff and relatives, particularly parents, 
are typically known to provide great assistance to individuals 
with IDD throughout life.  However, very few of the co-research-
ers included photographs of these supports.   

The absence of romantic partners. Less than .5% of all 
photographs included romantic partners.  Only two of the 
co-researchers took pictures of individuals to whom they were 
romantically attracted.

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appendix b 

Letter Written by Research Team to  
Various Local, State, and National Stakeholders 

Dear _________________, 

We are residents of Indianapolis and we are trying to make the world a better place for people with intel-
lectual and developmental disabilities (IDD).  We are a group of adults with disabilities who for the past six 
weeks have been meeting as a group to talk about how to make Indianapolis better.  We have some things we 
want to discuss with you.  We have identified the following issues within Indianapolis that we want to bring 
to your attention: 

Crime: We have noticed a lot of violent crimes in Indianapolis recently.  This is scary. We think policemen 
should be more available to help with these crimes.  Using a crime-stopper number is helpful and should 
made more well-known to residents of Indianapolis. 

Homelessness:  We have seen an increase of people on the streets asking for money.  We think homeless 
shelters should be more available to these people to help them get back on their feet and get a job.  They 
need to know how to find homeless shelters. 

Guns: We think there is too much gun violence in the city.  This is scary when people get shot in the stores 
and in their homes.  We would like to increase safety laws when people want to buy guns.  Only police should 
be able to have guns.  Please try to keep guns away from kids. 

Employment: We have talked a lot about how employment is the way to best support yourself and make 
money.  Having a job makes us feel respected, like good members of society. We want more employers to 
hire people with disabilities in Indianapolis. 

Living Independently:  Most of us live independently and we love it.  It makes us responsible for our ac-
tions and we don’t have to depend on our parents as much.  It makes us feel good about ourselves.  We think 
there should be more places for people with disabilities to live independently in Indianapolis. 

Indy Go: It would be really nice to have a more structured schedule with the Indy Go Open Door bus sys-
tem.  Sometimes when we call the dispatch, they hang up on us and it is rude.  It sometimes makes us late to 
our jobs.  Sometimes the bus doesn’t show up at all and we miss work. 

These are the biggest concerns we think our city faces.  We would like to make sure Indianapolis is as safe 
and inclusive of all people, as possible.  We would appreciate your support with these issues. 

Sincerely,  

(Names of co-researchers omitted)

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