You Can't Exclude Us Anymore! A Critical Reflection of Inclusive Research and Teaching Opportunities for People With Intellectual Disabilities in University Settings

Abstract

Historically, universities were a place of exclusion for people with disabilities, particularly people with intellectual disabilities. This exclusion was due to the false views that people with intellectual disabilities were unable to be educated, think critically or meaningfully contribute to academic activities, such as teaching and research. Fortunately, the disability and self-advocacy movements have challenged these stereotypes about intellectual disabilities and have advocated for the rights of people with intellectual disabilities to have equal access to education and employment. Typically, if people with intellectual disabilities were in university settings, it was to be studied in research projects or used as teaching objects. People with intellectual disabilities being students in higher education or employed by a university to conduct research or teach students was not seen as a possibility until recently.

One of the main ways to include people with intellectual disabilities in university settings is by doing inclusive (participatory) research. This means allowing people with intellectual disabilities to have an active voice in leading research and that they are meaningfully involved in the research process. This includes developing research questions, collecting and analysing data and writing and presenting research findings. Inclusive (participatory) research is to ensure that people with intellectual disabilities are not research subjects being studied by researchers (Strnadová and Walmsley 2018; Spassiani and Friedman 2014; Johnson and Walmsley 2003, 10; Abma, Nierse, and Widdershoven 2009). Conducting inclusive research with people with intellectual disabilities is a complex process requiring many practical, ethical and methodological considerations (Hewitt et al. 2023), which may be a reason why this type of research is not common. Ensuring that people with intellectual disabilities are actively involved in leading research adds great value to the lives of individuals conducting the research and enhances the overall quality of the research (Walmsley, Strnadová, and Johnson 2018; Spassiani, Becaj, et al. 2023; Spassiani, Abdulla, et al. 2023). Inclusive research allows people with intellectual disabilities to be able to help lead the change at the individual and societal level so that people with intellectual disabilities can live better lives (Salmon, Barry, and Hutchins 2018). Despite the benefits of inclusive research, there has been limited research done to meaningfully include people with intellectual disabilities as having an active role of being researchers (Rios et al. 2016; Bigby, Frawley, and Ramcharan 2014).

It is also common for people with intellectual disabilities involved in research to not be fairly paid for their expert knowledge and time working on the project (Longhi 2017). This is problematic as people with intellectual disabilities must be paid fairly for their work. People with intellectual disabilities have a hard time finding paid employment because of the stigma around having an intellectual disability. Society believes that people with intellectual disabilities do not want to have jobs, be paid for their work or have the skills needed to be successful at keeping a job (Spassiani et al. 2017; Bonaccio et al. 2020). One barrier to people with intellectual disabilities accessing meaningful employment in universities is the HR process not being accessible. A study reported that when trying to hire a person with an intellectual disability as a research assistant, they found even with the adjustments and support by Human Resources to make the standard recruitment process more accessible, the process was still difficult for the person with an intellectual disability to follow, and they needed personal support to help complete the process (Anderson et al. 2023).

The Equality Act 2010 states that employers have a duty to make reasonable accessible adjustments in the workplace to accommodate employees with a disability (Equality Act 2010). Failure to accommodate accessible adjustments is classified as disability discrimination and falls as a violation under Article 14 of the European Convention on Human Rights (Council of Europe 1953). Universities, like any other employer, have a duty to remove obstacles and make accessible adjustments to accommodate employees with disability so they can work in an inclusive environment and be equal to that of their nondisabled peers. Universities may not know how to provide an inclusive working environment for people with intellectual disabilities. It is important for universities to build strong relationships with disability grassroots organisations to help support the successful employment of people with intellectual disabilities. Disability grassroots organisations can help show society that people with intellectual disabilities should not be treated as charity cases but should be given equal and fair opportunities as nondisabled people (Kemple, Ahmad, and Girijashanker 2011; Dowse 2001). Disability grassroots organisations are experienced with working alongside the voices of people with intellectual disabilities and can help employers, like universities, better understand how to make working environments inclusive.

The United Nations Convention of the Rights of Persons with Disabilities (CRPD) states that people with disabilities should be involved in research that affects their lives (United Nations 2006). However, it is not well known how to effectively conduct inclusive research with people with intellectual disabilities. While there have been some inclusive research studies published, there are very few papers that have specifically focused on how to do inclusive research with people with intellectual disabilities (Bigby, Frawley, and Ramcharan 2014). For this reason, the purpose of this paper is to provide a critical reflection of an inclusive partnership between self-advocates (adults with intellectual disabilities) and allies (university researchers/lectures and a disability grassroots organisation) to empower adults with intellectual disabilities to colead inclusive research and coteach university students.

This paper will reflect on how an inclusive partnership supported the successful inclusion of people with intellectual disabilities to participate in university activities. Each author of this paper provided a critical reflection of their experience. Following the author's reflections, they coproduced a list of key recommendations to help others when they are developing an inclusive research/teaching partnership to consider. We hope this paper has a positive impact on creating awareness of how to help more people with intellectual disabilities become meaningfully involved in coproducing research and coteaching at the university level.

In this paper, the term citizen researcher is used to describe a person from the community who has not been professionally trained as a researcher but takes on the role of researcher as part of a bigger team. They are the researcher on the team who represents their community. They bring a new perspective to the research team to ensure that the voices of the community are represented in all parts of the research process (Vohland et al. 2021). For example, a citizen researcher can be a person with a learning disability who is part of the research team to make sure the voices of people with intellectual disabilities are being represented in that research project.

After developing both lists, we voted (NGT) on each list to determine our top three key recommendations. We did this because we know it can be overwhelming to look at a long list and not know where to start. For this reason, we identified the top three recommendations in both lists we think are a good place to start when creating opportunities for people with intellectual disabilities in universities. The top three votes in each list are bolded.

The purpose of this paper was to provide a critical reflection of an inclusive partnership between self-advocates (adults with intellectual disabilities) and allies (university researchers and a disability grassroots organisation) to empower adults with intellectual disabilities to colead inclusive research and coteach university students. Through critical reflections and group discussions/voting, this paper provides researchers/lecturers working at a university with a better understanding of how to meaningfully include people with intellectual disabilities in research and coteaching opportunities. It also provides recommendations for people with intellectual disabilities on what they should know about working at a university. The Universal Declaration of Human Rights Article 23 states that everyone has the right to work and that pay must be equal as someone without disabilities (UN General Assembly 1948). Universities must make sure they are key players in leading equal employment opportunities for people with intellectual disabilities and advocating for disability justice and inclusion within university settings.

Research about people with intellectual disabilities desperately needs their voices coleading the research process. Unfortunately, many researchers do not know how to successfully include people with intellectual disabilities as part of their research team. Furthermore, universities are unaware of how to provide inclusive working environments to meet the needs of people with intellectual disabilities (Hewitt et al. 2023). Past research has stated the importance of universities to include people with intellectual disabilities as paid researchers, having flexible HR systems, and the need to seek specialist advice/support from people who have experience working alongside people with intellectual disabilities to ensure accessible working environments (Anderson et al. 2023). This is also true about providing coteaching opportunities for people with intellectual disabilities. In the authors' experience, we found HR processes to not be accessible, regarding making sure payments do not negatively impact an individual's disability benefits, lengthy onboarding process, which had the potential to affect research money being used to pay people with intellectual disabilities for their work, and inaccessible pay sheets.

Disability grassroots organisations may be able to provide the support and guidance needed by universities to better understand how to provide inclusive working environments for people with intellectual disabilities (Spassiani, Becaj, et al. 2023). Universities and disability grassroots organisations should develop strong partnerships to support employment opportunities for people with intellectual disabilities who are meeting their working needs. Coproduced research and coteaching opportunities can be strengthened by developing a strong connection between people with intellectual disabilities, the university and the community. By working in partnership, everyone can build on each other's strengths and problem-solve together to come up with creative solutions that support the working needs of people with intellectual disabilities (Dowse 2001; Chappell, Goodley, and Lawthom 2001).

The authors of this paper spoke about the importance of providing proper research/teaching training for people with intellectual disabilities to ensure they understand what their expectations are and how to properly do the job being asked of them. Many people with intellectual disabilities will not have experience in doing research or teaching; for this reason, they need to be educated on how to do this for them to be successful at their jobs. The authors with intellectual disabilities in this paper received individualised training to meet their own needs to understand their job tasks. However, it would be beneficial for people with intellectual disabilities to be formally trained in conducting research as this will help them develop their skills as researchers and make them more competitive for future employment opportunities. Developing and having access to inclusive research training that is accessible to people with intellectual disabilities is important for their own professional development.

Past research has found that inclusive research takes a long time to complete due to the training involved and meeting the support needs of people with intellectual disabilities (O'Brien et al. 2022). This is not a bad thing but needs to be given serious thought to make sure inclusive research is done properly. Throughout our reflections, we also found that inclusive research and coteaching opportunities take a lot of time, requiring plans to be flexible and adaptable. For example, having flexible work schedules, scheduling extra time to prepare lectures or analysing data. Universities should be creative in coming up with other job opportunities for people with intellectual disabilities who may not be interested in research or teaching, for example, being a creative designer.

In the past, people with intellectual disabilities have never been welcomed in universities other than to be studied in research projects. The thought of employing a person with intellectual disabilities to work at a university was never a real possibility, it was not even a dream people had because it was seen as unreachable. The self-advocacy movement and disability movement have helped society understand that people with intellectual disabilities can be employed at universities. Having the voices, experiences and opinions of people with intellectual disabilities shaping research and teaching students is an empowering experience for the individual, the disability community and allies.

We hope this paper will have a positive impact on helping people with intellectual disabilities obtain paid working opportunities at universities. This will be another positive stepping stone to making sure people with intellectual disabilities are seen as equal human beings who have the right to opportunities, paid employment and have their skills recognised/valued by society. Universities can play a pivotal role in changing the way society views and treats people with intellectual disabilities. Universities are seen as a place of intelligence. Due to stigma, society believes that people with intellectual disabilities do not have intellectual thoughts (Spassiani and Friedman 2014). We know this is absolutely not true! Being able to showcase the intelligence of people with intellectual disabilities in university settings will help show the world their intelligence and their true impact on society.