Running head: THE TRUE EXPERTS 1

The True Experts on the Experience of Individuals with Intellectual Disabilities

Maureen Howard and Rob LeSueur

George Mason University

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Abstract

People with intellectual and developmental disabilities (IDD) are often overlooked when

it comes to providing expert knowledge on their experiences, preferences, and beliefs. Through

an exploration of the concept of expertise through lived experience using the framework of

participatory action research (PAR), the authors aim to break down previous societal notions of

individuals with IDD as experts. Participatory action research allows for this marginalized

community to lead the discussion and action about the issues they face. By elevating and

highlighting this voice and action, expertise can not only be described, but demonstrated.

Keywords: intellectual disability, PAR, expertise, knowledge 

 Wow!  A much improved paper compared to the draft!  Ha.  This really turned out to be a very

insightful exploration of the concept of expertise.  We hope you continue working on it and building it

out as we think we can be a valuable contribution to both your substantive field and to the field of

methodology.  In particular, we hope to see you work on the “findings” section as you continue your

work with the collective.  In addition, it seemed like the paper jumped straight from “findings” to three

short sections on implications. While those were useful, we would have liked to see the paper engage

more with the literature with which you framed the argument at the beginning in a strong discussion

section and then move to the implications in a conclusion.  The missing discussion section was a glaring

omission.  But overall, the paper is solid, the writing is excellent, and the potential is definitely there. 

Nice work.  I really hope you don’t just throw this in your “done” pile, but continue massaging it.  Let

me know if you’d like me (or Sascha or Giovanni) to meet with you to give specific pointers or to aid in

the manuscript preparation process.

 
Grade: 26/30
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The voices of individuals with intellectual and developmental disabilities (IDD) are

rarely included in research (Kitchin, 2000); instead, their stories are often told using proxy

accounts such as parents and school professionals (Jen-Yi, Krishnasamy, & Der-Thanq, 2015).

With increasing developments in special education focusing on self-advocacy, agency, and self-

determination, the experiences and perspectives of individuals with IDD are beginning to be

recognized as valuable. However, there is little research that supports the involvement of

individuals with IDD in the collection and dissemination of research (Petry & Maes, 2009;

Taylor, 2018).

Participatory action research (PAR) provides an avenue for participating in research for

people with IDD with an added benefit of being a key part in designing and doing the research.

PAR is a methodology based on creating social action through understanding the problems

faced by a community with the input of the community throughout the entire process (Baum,
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MacDougall, & Smith, 2006). People with IDD have long been institutionalized around the

world and only in the last 20 years has there been an effort to reverse this trend and to

reintroduce these individuals to their home communities (Jones & Gallus, 2016). This long

separation and societal opinion on the value of individuals with IDD has left them marginalized

(Chen, Hamm, Farmer, Lambert, Mehtaji, 2015). One of the goals of the PAR methodology is

to end the cycle of suppression of voice and action of a particular population (Kemmis, 2006).

Through ending the cycle by including the voice and action of the individuals in the target

community, an emancipatory process can hopefully begin. In societal beliefs about the abilities

and knowledge of individuals with IDD, they have been kept not only from research, but also

from most of the decisions throughout their lives with a documented negative impact on their

lives. (Dean, Fisher, Shogren, & Wehmeyer, 2016). The action piece of PAR will provide

means for individuals with IDD to become empowered to begin making decisions and making

the changes to their lives and environments that they themselves have deemed important. 

Intellectual Disabilities

Intellectual and developmental disabilities (IDD) are those which originate before the age

of 18 and are characterized by intellectual and adaptive functioning deficits in conceptual,

social, and practical domains (AAIDD, 2010). Students with IDD continue to lag behind their

typically developing peers in postsecondary outcomes (Newman, Wagner, Cameto, & Knokey,

2009). Students with IDD are among the least likely to attend postsecondary education

programs, obtain competitive employment, or participate in their communities (Grigal et al.,

2014).

The label IDD tends to produce a faulty assumption that individuals with cognitive

disabilities are deficient and cannot understand much of what is happening around them
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(Taylor, 2018). Therefore, individuals with IDD are often left out of the research process in

which they may share or create knowledge. While labels can be helpful and even necessary in

securing services needed to support these individuals throughout their lifetime (Osgood, 2006),

it produces a dynamic in which individuals with these labels belong to an outsider group,

excluded from research. This is counter to the goals of many journals in special education and

disability research that push for further inclusion in the schools, the community, and

workplaces. In order to combat the exclusion of marginalized groups, specifically individuals

with IDD, the authors advocate for a shift to include these individuals with IDD as participants

and researchers, not merely as subjects. 

In order to include individuals with IDD in the research, we must first establish them as

credible. Credibility implies that the researchers are experts in the field. The purpose of this

paper is to argue that individuals with IDD are experts and that through their lived experience

they have knowledge. This firsthand knowledge makes these individuals the experts of

intellectual disabilities. Through an exploration of the concept of expertise using the framework

of PAR, the authors aim to break down previous notions of what it means to be an expert and

provide arguments in favor of regarding people with disabilities as experts. 

Expertise

Traditionally, expertise has been defined through knowledge of specific skills and

qualifications at a mastery level ("Expertise," 2019). This definition is reliant on being deemed

able to obtain this knowledge and to have access to education within a mindset of colonialism

(Patel, 2016). This reliance is purposefully restrictive since it limits creation and dissemination

of knowledge to experts who are overrepresentative of the majority (Bagilhole, 2002). This
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allows those in power to retain their power through a monopoly on knowledge creation

(Foucault, 1980). 

The awakening to this systemic issue with oppression resulted in a new way of

understanding knowledge and expertise that recognized and included the knowledge of those

outside of positions of power (Freire, 2014). An emergence of a decolonizing definition of

expertise has emerged. This new definition affirms the knowledge created by members of the

other as valid and for the inclusion of nontraditional knowledge producers (Bhambra, 2014).

With this paradigm shift, the sources of knowledge expanded (Held, 2019). 

Under this new paradigm, lived experiences become a prime source for expertise to

develop, with a stance that the person that has firsthand experience of the phenomenon has the

best explanation of the meaning behind the experience (Smith, Flowers, & Larkin, 2009). Part of

the research that values lived experiences uses this epistemology as a source that can be collected

and analyzed by members of the academy (traditional experts) (Fox & Fine, 2013). Researchers

with this belief hopefully honor and stay accountable to their participants, but it is possible for

the knowledge to be removed from the participant and community and used solely by the

researcher for personal benefit (Frauenberger, Good, Fitzpatrick, & Iversen, 2015). However,

Appadurai (2006) argues that access to conducting research and using the results to improve their

position is a fundamental right that should be accessible and exercisable by all regardless of

social position or education. Through participatory research methodologies, the individuals with

lived experience continue to be a part of research beyond data collection allowing them to create

emancipatory actions based on the work (Salvio, 2013).  

Participatory Action Research

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Participatory action research (PAR) works to increase equity in and access to the research

process by having members actively participate in the creation and collection of data, as well as

the analysis (Baum et al., 2006). One of the main tenets of PAR is recognizing the imbalance of

power that exists in research that have been upheld by societal norms and then challenging that

imbalance (Fals-Borda & Rahman, 1991). In order to combat this imbalance of power, efforts are

made to empower the oppressed by creating opportunities for meaningful participation,

leadership of the process, and ownership of the knowledge. 

In recent years, more researchers are advocating for including individuals with IDD

(Walmsley, 2001). There has been an increase in articles featuring collaborative research studies

(Townson et al. 2004; Schalock et al. 2008). However, this form of research tends to not be used

with individuals with IDD (Coons & Watson, 2013). Potential reasons for this include difficulty

finding communities of individuals with IDD, accessing these individuals through their

gatekeepers, and understanding the contributions of individuals with IDD when they do

participate (McDonald, Conroy, Olick, 2016). When PAR is used in an attempt to include the

voices of individuals with IDD in the research process, much is left to be desired. Typically

when individuals with IDD are included in PAR, they tend to be included in one of two ways.

First, in some instances individuals with IDD are included as a singular representative of

disability as a co-researcher (Timmons, Cohen Hall, Bose, Wolfe, & Winsor, 2011; McDonald,

Conroy, Olick, & the Project ETHICS Expert Panel, 2017). For example, Timmons, Cohen Hall,

Bose, Wolfe, and Winsor (2011) investigated factors that impact employment for individuals

with IDD. Because they recognized “the value of participatory action research”, they included

one co-researcher with a disability. While this is a step in the right direction, it lacks

understanding of the underlying emancipatory assumptions that PAR holds. Due to the power
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dynamics that exist of those without disability labels over those that have such labels, only

including one or a few people with IDD in a larger group of people who are neurotypical leads to

an environment where power cannot be balanced. 

Second, when greater efforts are made to really include a multitude of individuals with

IDD, a majority of the articles that can be found discuss using photovoice as the primary tool

used to gather data from these communities. Photovoice is a tool in which co-researchers use

cameras to capture photos that represent the issues they face in their communities (Wang, 1999).

The tool is predominantly recognized as a way for research to be more inclusive.

The idea behind the use of photovoice with people with IDD in so many studies is that it

“emphasizes action over cognition” (Booth & Booth, 2003).  While photovoice provides an

avenue for individuals with IDD to participate in research, this tool actually perpetuates an

ableist narrative of the lack of knowledge of people with IDD. Wang (1999) describes

photovoice as a two-part process; the first as a process where the participant controls what is

collected through photography and the second as a group discussion in which photos are

selected, sharing stories about the selected photos, and collectively codifying the stories and

pictures into themes. 

Unfortunately, many studies that utilize photovoice with individuals with IDD make

modifications that question the authority, knowledge, or ability of their participants. Povee,

Bishop, and Roberts (2014) did not dialogue as a large group with their participants during

analysis, instead opting to do small group or individual interviews. Additionally, they allowed

parents or guardians to be present during some interviews bringing into question the authority the

researchers felt the participants possessed. Many other researchers skip the dialogue and opt to

analyze the photos collected independent of the participant (Obrusnikova & Cavalier, 2011;
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Booth & Booth, 2003). This omittance of the dialogue brings to question if the researchers

valued the participants’ voices as a source of knowledge or their ability to participate in such a

manner. In Schleien, Brake, Miller, and Walton (2013), the researchers required all participants

to have an assistant with them in order to participate. All the assistants were immediate family

members of the participant, usually one of the participant’s parents. 

Ollerton (2012) provided an example of a merger between inclusive research and

participatory action research. This merger focused on the access to the research process of

Inclusive Research with the emancipatory nature that is driven by the participant in PAR.

Ollerton, like many other researchers attempting PAR-like studies with individuals with IDD,

used photovoice as a primary technique in collecting and analyzing data. This unique merger of

methodologies is a starting point into including people with intellectual disabilities, but we

contend that this methodology could be taken further.

It is clear that attempts are being made to include more individuals with IDD in research.

However, it is necessary to push beyond methods that feed into narratives that preserve the status

of those with IDD as less than or not as good as those deemed to have higher intellect. Instead, it

is the responsibility of researchers, scholars, and practitioners to explore other ways to recognize

individuals with IDD as experts and encourage active participation in collecting and

disseminating research. Through this further shift in the paradigm, the authors hope that people

with IDD can be active participants in the efforts to reverse ableist policy and societal beliefs that

continue to marginalize persons with disabilities.

Methodology

In order to better understand the unique experiences of individuals with IDD and

establish them as experts, the authors created a PAR collective of young adults with IDD. After
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discussion among the authors, criteria were established for who to initially invite to join the

collective. These criteria include young adults that identified as having IDD between the ages of

20-35 that were no longer attending school. Through personal contacts of the authors as well as

emails to various advocacy groups for people with disabilities, the authors were able to recruit

three individuals with IDD for the first meeting. All three of the members previously knew one

of the authors as their instructor from their time in GMU’s Mason LIFE program. The first

meeting with the PAR collective was held on GMU’s campus in a classroom setting. During this

meeting, each member introduced themselves and shared the individual motivations for joining

the collective. The collective also developed a community agreement to ensure that the founding

members established the group as a safe space. Through introductory and follow-up

conversations, many concerns of the community were raised. Some of the issues that members of

the collective shared included family troubles, struggles with employment, and a longing for

social activities. 

The PAR collective met a second time, in the same classroom on GMU’s campus as the

first meeting. The same three individuals with IDD from the first meeting joined as well as two

additional members with IDD. During the second meeting, ways to build community were

discussed. One of the ways this was done was by naming the group. All members offered

choices, discussed the choices as a group, and voted on the name. Additionally,  the collective

made an online group to allow communication and discussion among members between

meetings. During both meetings, the PAR collective discussed who should be included and how

to invite more people to join. When authors suggested people that were outside GMU’s Mason

Life alumni, the individuals with IDD agreed by nodding or saying that it was okay to invite

them. However, almost every person that a member of the collective suggested to invite to future
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meetings were Mason Life students or alumni. This difference in thoughts about who to invite

illuminated who they thought belonged and would be welcome in their collective. In addition to

discussing who should be invited to join the collective, the members also discussed different

meeting locations. Some of the suggestions included Panera, Tropical Smoothie, the movie

theater, and the mall. Both during and after the second meeting, one of the authors mentioned

how it might be better to have the third meeting at a location off campus.  It was clear that the

classroom brought out a feeling of a student-teacher relationship. This was evident in both

meetings in which the individuals with IDD referred to one of the authors by his teacher name,

instead of his first name which he used to introduce himself. This was also seen in the

suggestions to include in the community agreement. Many of the individuals with IDD suggested

rules similar to the ones that they had in the classroom with one of the authors as the teacher. 

Analysis 

Experts of the community and experts on creating community

The members of the PAR collective established themselves as experts of the community

from the start. When asked if they knew others that may enjoy being a part of this collective,

each individual with IDD was able to suggest a friend or peer to invite to a future meeting.

Additionally, most of these suggestions were accompanied with reasons on why the named

individual would be an ideal addition to the newly formed group. Additionally, individuals with

IDD suggested meeting places in the Northern Virginia area that they could access. This

provides another example of how they are knowledgeable of their community and contributors to

the formation of the meeting places. When we discussed as a group the expectations of how

often we plan to meet, members proposed different ideas on number of meetings. The majority

of members were most excited about doing social things with group such as going to Dave and
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Buster’s, out to dinner, or to the mall, along with discussing and working on issues such as

family struggles, dating, and finding employment together. Through discussion and negotiation,

the individuals with IDD decided to meet twice a month, once with a social focus and once with

a discussion focus. 

Experts on needs

At the conclusion of the second meeting, we had a brief discussion in which all members

of the group shared why they joined the collective. Four of the five individuals with IDD shared

that they joined the group to be more active. The way the group was using the term active was as

involvement or engagement with a community. One member provided a brief explanation. He

shared that he wanted to come to the group so he could “get out of the house and be busy and

active and not take a nap all day” because his “whole family hates it”. Other members of the

group joined in agreement by nodding or saying yes. This provides an example of how

individuals with IDD can recognize their needs and articulate this to others.

Another example of individuals with IDD identifying their needs is a member of our

collective expressed explicitly to the group her need for better communication on when our

group will be meeting moving forward. At the conclusion of our first meeting, we collectively

decided the time and place for our next meeting. Everyone appeared to agree and note the time.

At the following meeting, several members of the collective asked where Melissa was. A

member reached out to her via social media and she responded promptly. She stated that she

thought the meeting was later in the day. She sent several follow up messages to members of the

collective saying she would be coming late. When she arrived twenty minutes late, Melissa asked

that we please let her know the time for future meetings because her mom was asleep and she

had to wake her up to get to the meeting at the time. This anecdote illustrates how individuals
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with IDD are able to identify needs in order to participate and accomplish tasks. The collective

led by the individuals with IDD decided that using social media would help in communicating

amongst the group as well as a reminder of locations and time.

Experts on Research

One tool that was used to explore some of the issues that each member of the collective

experiences in their everyday lives was card sorting. Card sorting typically involves sorting

either given or created topics or issues into different categories. These categories vary depending

on the topic being discussed but can be priority levels, questions of validity, or about

relationships or associations (Ritchie & Lewis, 2003). The purpose of this tool is to facilitate

discussion surrounding the choices made, how these choices reflect participants’ priorities, and

the effect of these priorities (Ritchie & Lewis, 2003). The authors felt this tool might allow for

members to participate in a variety of ways including writing their responses, dictating their

response to another member to write, or verbally sharing their response. Therefore, this tool was

recommended and facilitated by the authors and modeled for members. Each member was given

several sticky-notes and wrote down the issues troubling them at the time. All of the members of

the collective were able to identify at least one concern. From there, each member identified

whether the concern was a big, medium, or low concern and sorted appropriately. The collective

then reviewed the groupings and both the authors and the individuals with IDD shared if they

agreed or disagreed with how the concerns were sorted. This activity allowed all members of the

collective to participate in a way that was free from potential issues related to power dynamics in

the group. All the collective came up with their recent concerns apart from the influence of

others.  The collective demonstrated their expertise on issues in their own lives and an ability to

prioritize these issues based on size.

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Experts on Gatekeepers

Decision making opportunities are limited for individuals with IDD. In their school

years,  individuals with IDD are often not included in discussions about their individualized

education programs, much less invited to the meetings in which decisions are made about their

academic programming (Arndt, Conrad, & Test, 2006; Shogren & Plotner, 2012). This tends to

continue to be a theme throughout their lives. Families tend to be the loudest voice when it

comes to decision making, rules, boundaries, expectations, etc. They are essentially gatekeepers

for individuals with IDD. The topic of gatekeepers came up in two major ways in meetings with

the collective. 

First, in recruiting members to join the PAR collective, the authors made an effort to

contact individuals with IDD directly to join. Through the use of different social media and email

avenues, the authors attempted to contact individuals with IDD. However, the authors had

difficulty getting ahold of co-researchers due to gatekeepers. Both authors were met with

families eager to communicate about getting their son or daughter involved in the collective.

Both authors had parents message them directly, instead of their son or daughter. Also, the

individuals with IDD that came to both meetings were unable to drive and had their family

members drop them off. Some family members even came into the meeting and wanted to speak

to the authors. The authors had to combat this previously reinforced notion that families must

speak and advocate on individuals with IDD’s behalf. When met with questions or requests by

families, the authors emphasized the individuals with IDD and their involvement, voice, and

expertise in decision-making and participation. In one meeting, the authors had to specifically

ask a gatekeeper (one of our coresearcher’s parents) to leave the meeting place before beginning

discussion. This did not cause any issues with the individual with IDD or their parent.
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Second, a majority of the members of the collective mentioned families at some point

during one of our meetings. They clearly articulated the things that their families do for them like

providing transportation and funding. Frustration with family was also tentatively brought up by

a few members. This frustration seemed to be related to decisions being made for them by their

family, but it has not been explored further. This provides an example of how the individuals

with IDD recognize the role the gatekeepers play in their lives and can provide expert knowledge

on the relationships in their lives.

Through dialogical analysis as well as tools such as card sorting, individuals with IDD

were able to be actively engaged and participate in part of the analysis process. By using analysis

methods that are part of the collection process, it reduced the cognitive load required by recall

and allowed for meaningful analysis of the abstract within discussion for individuals with IDD. 

Having only had two meetings, the authors hope to continue to explore how individuals with

IDD establish themselves as experts. The authors plan to continue to have discussion and sorting

based analysis within the group including simultaneous analysis with prompts (i.e. “What do you

think this means?”). 

Implications for Policy

Conducting research in which individuals with IDD are not just subjects, but active

researchers has the potential to impact policy in multiple areas. First, establishing individuals

with IDD as experts could lead to policymakers seeing them as more capable. This shift in

perspective could lead to major reductions in barriers to voting. Currently, individuals with IDD

are the least likely of any people group to exercise their right to vote (Friedman & Rizzolo,

2017). One of the largest barriers to voting is a societal belief that individuals with IDD do not

have the ability to understand an abstract voting system and therefore will be influenced by
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someone else in their lives on how and who to vote for in an election (Agran, MacLean, &

Andren, 2015). Additionally, viewing individuals with IDD as capable to contribute to

discussions and decisions surrounding their own lives has the potential to impact guardianship.

In some situations, families advocate for guardianship over their son or daughter’s medical,

financial, educational, and relationship decisions due to their perceived inability to understand

the topics (MacLeod, 2017). However, members of the PAR collective demonstrated in just a

short period of time the ability to contribute in a supported environment. This provides evidence

to support their capability when it comes to supported decision making.

Implications for Practice

Aspects of the classroom as well as in society can be impacted by including individuals

with IDD in research. Creating space for a more inclusive research process has potential to

impact self-determination of individuals with IDD in two ways. First, practitioners have the

opportunity to recognize the voice of individuals with IDD. Second, as evidence by the present

PAR collective, when individuals with IDD are included in the research, there is potential for an

increase in self-confidence, as well as willingness to contribute. Another potential outcome of

including individuals with IDD in the research process is increasing the awareness of the needs

of these individuals by other stakeholders, including but not limited to family members,

educators, community members, or employers. Finally, there is also the possibility of increasing

the social capital of individuals with IDD. 

Implications for Research

Including individuals with IDD in research has the potential to impact the formal systems

of research in two major ways. First, the PAR collective discussed in this paper could serve as a

primary source for future studies that previously were done with proxy sources. Second, there is
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potential to see a reduction of claims that individuals with IDD were influenced by researchers or

other people with authority such as people funding research or policy makers. Further, validity in

research for individuals with IDD is typically difficult to ensure. By involving individuals with

IDD directly in the collection and analysis of data, the information provided is more likely to

have higher validity than when left for others without disabilities to interpret.  There is also a

need to include people with disabilities in the formulation of research questions and collection of

information to gather first hand the topics most important/relevant to them.

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