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. When you add systemic bias to the list it’s easy to see how the exclusion is perpetuated.
People with intellectual disability are often viewed as “vulnerable” in ethics approval processes. This makes their inclusion more difficult for researchers.
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 things that happen often in services which upset people, but which do not get treated as violence or abuse. They are things like having unkind jokes made about you, being ignored, or being disrespected.
- In our project, we called this misrecognition.
- We looked at when misrecognition happened between young people with disability and their paid support workers.
- A lot of the time, people did not intend to cause harm. 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.