- Individuals who are invited to participate in this research are not always subjects in the specific content of the study.

- They may simply be the most likely people to participate because of their public advocacy.

 Not all Individuals with ID are experts 


It is discriminatory to generalize the abilities of the ID community to a select few individuals. For example, one would not assume that all amputees have the same perspective. They have different life experiences so they will not all have the same opinion. So why should we assume that people with a broad spectrum of abilities and experience resulting from their ID would have the same perspective?

ID Perspective and Research

This term is used to refer to how individuals with ID are involved in research through prioritizing design as well as advising on and disseminating on research.

Cedarville University

The most common role for individuals with ID in research. It involves participation in prioritizing research and in decision-making regarding funding.

When individuals with ID’s, advise research teams about a project’s overall direction, or a specific issue. This can be done in a separate group or with others.

Advisory Approach

“Walmsley (2001) coined the term ‘inclusive research’ to denote research involving people with intellectual disability as ‘more than just subjects or respondents’’

Other words to describe it include participatory, collaborative, and co-researching, action, and emancipatory. The words are not necessarily true, accurate, or applicable as participation of individuals with ID has not been exclusively restricted to qualitative research.

Inclusive Research

Bigby, C., Frawley, P., & Ramcharan, P. (2014). Conceptualizing Inclusive Research with People with Intellectual Disability. Journal of Applied Research in Intellectual Disabilities, 27(1), 3–12. https://doi.org/10.1111/jar.12083 

Conceptualizing Inclusive Research with People with Intellectual Disability


- May advise components of research design
- Recruitment strategies
- Collection & dissemination of methods

Role of People with Intellectual Disabilities in Advisory Groups

People with ID who advise research may not be included at all in the study and they have no control over their level of involvement.  The researchers that request the individuals’ involvement decide the level of involvement.


Levels of Involvement within the Advisory Approach

Experts by Experience

- In collaborative groups, people ID are more likely to initiate or negotiate their involvement
- Individuals may find out about the research through advertisements or through connections with academics who have mutual interests 

Advisory Approach vs Collaborative Approach

While research funding commonly acquires the inclusion of individuals with intellectual disabilities, there is a severe lack of protocol. 

It remains to be seen whether the inclusion of this population yields results of significance or if their involvement is feasible.

Research Funding Requires Inclusivity of IDD

Individuals may:
- Give advice to research team about what to do 
 - Lead and control research
- Work together as a group with different jobs based on individualized interests and skills

How Individuals with Intellectual Disabilities are Involved in Inclusive Research

This approach gives people with ID the control they need to initiate, lead, and execute research about issues that are of particular importance to them. It utilizes action research as well as participatory and emancipatory approaches. This combined approach aims to raise awareness and allows the researchers with ID to serve as their own test subjects. 

Leading and Controlling Approach


If individuals with ID are not involved in the research process, then the knowledge that is produced will continue to be contributed by non-disabled researchers.

The importance of ownership and involvement of individuals with ID in research 	

- Support of self-advocacy in the ID community is limited and still developing. 
- This may restrict the number of individuals who can participate as many individuals may lack the skills or experience to partake. 
- It is dangerous to assume there is one perspective from all individuals with ID. 
- There may also be a limited relationship between people with ID and the government or other organizations facilitating this research. 


Limitations of Inclusive Research and Sampling of Persons with ID

There are several researchers that cast doubt on the credibility and reliability of inclusive research.

Issues for Consideration for Inclusive Research

- Increased Confidence
- Chance for the individual to better understand their place in the world
- An enhancement of understanding about early life
- Increased knowledge about discriminatory experiences
- Recognition from office bearers
- Opportunity for paid work

 Individual Benefits of Inclusive Research

Advocacy and community work typically employs non-academic staff and uses less costly methods. They also make a different value claim.

Difference between Inclusive Research and Advocacy or Community Work

This type of inclusive research is led and controlled by individuals with intellectual disabilities and utilizes the support of researchers or other allies without disabilities.

May also be defined as a partnership or collaboration between people with and without disabilities who work together in research. They each have shared and distinct purposes. Both groups are given a similar amount of attention and their contributions are equally valued.

Collaborative Groups

A more specific outline of the approach may allow for better design as well as developing a way to identify the skills required for inclusive research. An improved clarity will allow administrators to create clearer expectations for time frames and funding.

Implications for Future Inclusive Research

Fair participation selection protects vulnerable populations. The persons recruited for research should be selected based on the aims of the study and not vulnerability, privilege, or other unrelated factors. Those with severe intellectual and developmental disabilities should only be involved in research if relevant data cannot be collected without them.

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