Making research accessible to individuals with disabilities

July 26 is National Disability Independence Day in the United States. In research ethics, the ethical principle of justice includes the equal participation of volunteers representing the diverse populations within humanity. This includes people from all races, ethnicities, genders, gender identities, religions, sexual orientations, ages, socio-economic statuses, and abilities. However, unless the research is specifically studying certain disabilities, people living with disabilities tend not to be recruited into research studies.?

This article will look at what research participants with disabilities experience when participating in research. We will look at what legislation exists for research participants disabilities and what accommodations they suggest. We will also look at the difficulties that researchers with disabilities face when planning and conducting their research studies, and what can be done for accommodating disabled researchers.

Experience of research participants with disabilities

When a person experiences a disability, they suddenly encounter obstacles that they never experienced before in all aspects of their lives.? They may face obstacles in such routine actions we take for granted such as getting out of bed, washing, dressing, going shopping, preparing meals, etc. When choosing to participate in a research study, disabled people may face obstacles and challenges that a research participant without a disability would not encounter. These obstacles can significantly impact their ability to contribute to and benefit from research.

Barriers preventing access to the research study

Physical Barriers: Research facilities and examination rooms may be inaccessible to a participant in a wheelchair, transportation options may be lacking for a participant with disabilities who lives in an area without adaptive transport services, and for overnight and multiday studies, accommodations may be inadequate for those with mobility impairments.

Communication Barriers: Research participants with hearing or speech impairments may encounter a lack of accessible communication methods, such as sign language interpreters or captioning services.

Information Barriers: Research participants with visual impairments or cognitive disabilities may encounter research materials and consent forms that is not available in accessible formats, such as braille, large print, or easy-to-read versions. Consent forms and study information may be too complex or not presented in an accessible manner, making it difficult for disabled individuals to fully understand and provide free and informed consent.

Exclusion criteria may prevent disabled people from participating in research studies

Overly Restrictive Criteria: Some studies may have exclusion criteria that inadvertently or intentionally excludes disabled individuals, limiting their participation.

Medical Complexity: The presence of multiple health conditions can disqualify disabled individuals from participating in studies focused on specific conditions.

Researcher’s attitude or lack of awareness can also be barriers

Bias and Discrimination: Researchers may have biases that lead to the exclusion of disabled individuals, or they may not actively recruit disabled individuals due to assumptions about their ability to participate.

Lack of Awareness: Researchers may not be aware of the specific needs of disabled participants or how to accommodate them.

Participation in a research study may involve additional logistical considerations for people with disabilities

The planning and conduct of a research study involves numerous logistical issues. For disabled people, participation in a research study may involve additional logistical issues that do not usually cause problems for participants who are not disabled.? Some of these additional logistical issues include:

Scheduling Conflicts: Inflexible study schedules that do not accommodate the needs of disabled individuals, such as the need for additional time or breaks.

Caregiver Dependence: Disabled individuals who rely on caregivers may face difficulties in coordinating participation without adequate support.

Cost of research participation

Many disabled individuals face financial burdens as a result of their disability. Their financial burdens and disabilities may cause disabled research participants to face additional financial barriers that participants who are not disabled would not normally face. For instance, although expenses related to travel, accommodations, and other participation-related costs may be covered by the study, any additional costs that a disabled participant may incur that a research participant without a disability would not (for example, the travel and accommodation costs of the caregiver) would not normally be covered by the study.

What the legislation says about accommodating disabled research participants

In Canada, the laws stipulate that individuals with a disability have the same rights as individuals without a disability. In 2018, the government of Canada enacted Bill C-81: An Act to Ensure a Barrier-Free Canada. ? This Act led to the creation in 2019 of Accessibility Standards Canada as a government departmental corporation tasked with the goal of creating accessibility standards for disabled employees and disabled users of federally-regulated entities and federal organizations that are governed by the Canadian Labour Code.? These federal entities and organizations include government bodies such as parliament, the public service and crown corporations, banks, courts, the military and RCMP, telecommunications and transport, and other bodies under federal rule.

Disabled Canadians participating in research studies at an institution that falls under federal rule, or is funded by an organization under federal rule, such as the Tri-Council agencies (Canadian Institutes of Health Research (CIHR), Natural Sciences and Engineering Research Council of Canada (NSERC), and the Social Sciences and Humanities Research Council of Canada (SSHRC)) will benefit from the standards created by Accessibility Standards Canada as these agencies, and the research institutions that they fund, must incorporate the Accessibility Standards Canada standards into their research studies.

Many Canadian provinces have enacted Acts to help make various aspects of daily life accessible to individuals with disabilities.? A couple of examples include the Accessibility for Ontarians with Disabilities Act , and the Quebec Act to secure handicapped persons in the exercise of their rights with a view to achieving social, school and workplace integration .? Although these acts do not specifically go into detail regarding the integration of disabled individuals into research studies, they do provide information on how to adapt laboratories, research institutions and other public spaces to accommodate disabled individuals, and information on what is required to enable disabled individuals to participate fully in society, on par with individuals without a disability.

In the United States, the Americans with Disabilities Act (ADA) prohibits discrimination against individuals with disabilities in all areas of public life, including employment, education, transportation, and public accommodations. In the context of research, the ADA requires that research facilities, events, and related activities be accessible to individuals with disabilities and that researchers provide reasonable accommodations to enable the participation of disabled individuals. This can include physical accessibility, accessible formats for information, and assistive technologies.

Internationally, the United Nations Convention on the Rights of Persons with Disabilities (CRPD) promotes, protects, and ensures the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities. It calls for inclusive research practices and the elimination of barriers to participation in research.

Experience of disabled researchers and ways to help them conduct research

Disabled researchers have a unique perspective and understanding of the challenges faced by disabled research participants, a perspective that most researchers without a disability don’t have.? The valuable perspectives and insights that disabled researchers have can enhance the inclusivity and relevance of research. However, unless the disabled researcher is actively participating in the creation and design of the research study, they may face a variety of obstacles that can impact their ability to effectively conduct the research study, especially if the study was created and designed by people who are not disabled, such as the study sponsor.

Issues of Accessibility

Physical Barriers: Laboratory spaces, offices, and equipment may be inaccessible to researchers in a wheelchair or who have another physical disability.

Digital Accessibility: Online platforms and software that are not compatible with the assistive technologies that some disabled researchers may use.

Event Accessibility: Conferences, workshops, and meetings that are not accommodating to disabled attendees.? For example, these events may not have sign language interpreters or sub-titled speeches for deaf researchers, may not accommodate or accept seeing-eyed dogs for blind researchers, or even lack ramps or elevators for researchers in wheelchairs.

Discrimination and Bias

Disabled researchers may be victims of misconceptions about their capabilities and this false assumption can lead to prejudice and discrimination in academic and professional environments.

Funding and Resources

The discrimination and false assumptions referred to above can also lead to disabled researchers encountering difficulties in securing funding for research, particularly for projects focused on disability. Any additional funding required to adapt and accommodate the research to the researcher’s disability (for example, the added costs of translating a study protocol into braille for a blind researcher) can also be hard to obtain.

Institutional Barriers

Disabled researchers may encounter obstacles at their research institution. They may find that their institution’s policies supporting disabled researchers may be lacking or insufficient.? They may also find that their institution lacks support services designed to assist them in the conduct of their research.

Networking and Collaboration

People with disabilities often claim that they feel more isolated as a result of their disability.? Disabled researchers also experience this isolation when the obstacles listed above, such as accessibility issues or discrimination, result in limited opportunities for networking and collaboration.? These limited opportunities result in an underrepresentation of disabled researchers in leadership roles and decision-making bodies.

Resolving the challenges and obstacles that disabled researchers face

Just like with disabled research participants, awareness and collaboration with disabled researchers are key to finding and implementing solutions resolving the challenges and obstacles that disabled researchers face.? Many of the solutions are similar to the solutions resolving the challenges that disabled research participants face.

Improving Accessibility

Universal Design: Although adapting laboratories, offices, and digital platforms to meet the needs of a researcher with a specific disability is a good first step, it would be better to incorporate designs that meet the needs of researchers with various disabilities in order to ensure accessibility for all.

Assistive Technologies: Providing access to and training for assistive technologies.

Event Accessibility: Ensuring conferences and events are fully accessible, including physical spaces (i.e. wheelchair accessible), formats (i.e. close captioning of speeches and presentations, sign language interpreters, etc.) and virtual formats for those whose disabilities prevent them from attending the events.

Assessing and addressing the needs of researchers with disabilities

Identifying and providing accommodations to disabled researchers starts by conducting individual needs assessments to determine the specific needs of disabled researchers.? Once this is done, funds can be allocated to cover the costs of necessary accommodations, such as modified equipment, personal assistants, or transportation.

Research institutions should develop and enforce policies that support the inclusion and advancement of disabled researchers.? These policies should include the provision of flexible work arrangements that offer flexible work schedules, remote work options, and other accommodations.

Discrimination and bias can be fought by providing training on disability awareness and inclusion for all members of the academic community and establishing mentorship programs to support disabled researchers and promote their career development.

Funding opportunities for disabled researchers can be provided by creating grant programs specifically for research conducted by disabled researchers or research on disability-related topics and advocating for increased funding and resources from government and private sources.

Networking and collaboration with disabled researchers can be enhanced by developing networks and professional organizations that actively include and support disabled researchers. Existing networks and organizations can be reformed to include and support disabled researchers. Collaboration tools and platforms can also be updated to be accessible to all participants.

To increase representation and leadership, research institutions can promote disabled researchers to leadership positions and decision-making bodies.? Institutions can also highlight the achievements and contributions of disabled researchers.

Conclusion

Ensuring accessibility in research for individuals with disabilities is a multifaceted challenge that requires addressing and overcoming physical, communication, and informational barriers, as well as combating discrimination and biases. Although legislation provides a strong foundation for promoting inclusivity and equal participation, implementation of the legislation at the institutional level is crucial. Research institutions must develop comprehensive policies, provide necessary accommodations, and foster an inclusive culture to support both disabled research participants and researchers. By actively involving disabled individuals in the design and conduct of research and by removing systemic barriers, the research community can not only meet the ethical principle of justice, but also enhance the diversity, inclusivity, and overall quality of research.

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