Engaging people with intellectual disability in research

People with intellectual disability continue to be excluded from research practices. This is often due to social and economic factors such as limited education opportunities and access to services. Exclusion is easily perpetuated when you add systemic bias to the list.

Ethics approval processes often view people with intellectual disability as “vulnerable”. This makes their inclusion more difficult for researchers.

Four people are seated at a table but their faces are obscured. One is writing on a notepad. A coffee mug and laptop are on the table. Including people with intellectual disability.

The design of research methods systemically excludes people with disability and other marginalised groups. Consequently, their voices are unheard in health, employment, education and independent living research.

According to an article from the US, approximately 75% of clinical trials have directly or indirectly excluded adults with intellectual disabilities. Just over 33% of the studies have excluded people based on cognitive impairment or diagnosis of intellectual disability.

New methods needed

In response to the ethics and research design challenges, researchers are finding new ways to adapt their methods. The article discusses three approaches:

1. Adapting research materials and processes into individualised and accessible formats.

2. Adopting inclusive research participation methods.

3. Community participation and co-researcher engagement.

Although inclusion strategies are making progress, researchers are lacking helpful guidance. Consequently, including people with intellectual disability in research in a meaningful way requires more work.

The title of the paper is, Inclusive Methods for Engaging People With Intellectual and Developmental Disabilities in Research Practices. This is a short paper and easy to read.

Technology and wellbeing

A related article on co-designing with people with intellectual disabilities looks at developing technologies. Here is an excerpt from the abstract:

Involving people with intellectual disabilities on issues relating to their mental wellbeing is essential for developing relevant tools. This research explores the use of inclusive and participatory co-design techniques and principles.

Individuals with intellectual disabilities participated in a co-design process via a series of
workshops and focus groups. The workshops helped participants explore new technologies, including sensors and feedback mechanisms that can help monitor and potentially improve mental wellbeing. The co-design approach developed various interfaces suited to varying ages.

The title of the article is, In the hands of users with Intellectual Disabilities: Co-Designing Tangible User Interfaces for Mental Wellbeing.

People with intellectual disability and support workers

Abuse of people with intellectual disability focuses on extreme forms of violence at the expense of everyday indignities. Humiliation, degradation, and hurt have a negative effect on identity and makes it more difficult to recruit research participants.

An article by a group of Australian researchers recommends taking action to support both workers and people with disability for improved wellbeing. Here are the key points from their article:

  • Everyday harms are the little things that upset people, such as making unkind jokes about you, being ignored, or disrespected, are not treated as abuse
  • In our project, we called this misrecognition.
  • We looked at when misrecognition happened between young people with disability and their paid support workers.
  • Much of the time, people did not intend to cause harm, but the other person was still hurt by the things they did or said.
  • We can improve the way that people with disability and support workers work together if people understand how their actions affect other people.

The article is titled, Recasting ‘harm’ in support: Misrecognition between people with intellectual disability and paid workers.

Theatre, research and intellectual disability

This study aims to demonstrate how disability theatre contributes to inclusive research practice with people with intellectual disability. The title of the article is Disability Theatre as Critical Participatory Action Research (CPAR). Here is an excerpt from the abstract:

This article describes how self-advocates (individuals with intellectual disability), theatre artists, researchers, and a community living society create social justice disability theatre as critical participatory research. It demonstrates how disability theatre can contribute
to and advance inclusive research practice.

Disability justice-informed theatre as CPAR has direct relevance to people with intellectual disabilities. It also offers a platform where self-advocates’ diverse ways to communicate and be in the world are honoured. Mentorship generates opportunities for self-advocates to learn, practice, and develop research skills.

The theatre creation process (devising, developing, and refining scenes) is research in itself where tensions are recognized as sites of possibility. Future research should explore strategies, and protocols for power sharing and problem solving within disability theatre.

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