Please note, person-first and identity-first language have both been used in recognition that people have different preferences.

I am a chronically ill genetic counsellor, who is sometimes disabled. My genetic condition has fostered strengths, but has also provided challenges throughout my education and in the workforce. I experience reduced equity and feel less included in the profession than my abled peers. Many students and genetic counsellors with disability, chronic illness, or neurodiversity feel similarly. In order to raise awareness, promote inclusion, and strive for equity for this particular cohort of future and current genetic counsellors, I began a website called Dare To Be Aware.

Disabled genetic counsellors are relatively few. The National Society of Genetic Counselors Diversity, Equity, and Inclusion Assessment revealed 7.89% of respondents identified as having a disability (The Exeter Group, 2021). In contrast, the World Health Organization (WHO) estimates that the global prevalence of disability is 15% (World Health Organization, 2020). Why is there a lower proportion of genetic counsellors with disability compared to the general population? Are there barriers for entry and inclusion within graduate programs and/or the workforce? Do some disabled genetic counsellors choose not to identify themselves from fear of stigma and discrimination? Is it something else? No one knows. There remains a paucity of data and literature regarding disabled genetic counsellors.

One thing is clear: disabled, chronically ill, and neurodiverse students and genetic counsellors are entitled to adjustments (also known as accommodations). An adjustment is “a change to a work process, practice, procedure, or environment that enables an employee with disability to perform their job in a way that minimizes the impact of their disability” (Australian Network on Disability citation A). Adjustments could include flexible working hours, working from home, elevators/ramps, or accessible bathrooms. Importantly, accommodations are not just extended to people with disabilities (Bonaccio, 2020). Part-time work, the ability to attend a doctor’s appointment during work hours as a patient or caregiver, or access to prescription glasses/contacts are examples of adjustments that are normalized and regularly accessed by people without a disability. In Australia, reasonable adjustments are strongly implied in legislation as one of the clear mechanisms to prevent discrimination in the Disability Discrimination Act 1992 (Office of Parliamentary Counsel, 2016). Other countries have similar legislation.

How do you practically offer or arrange adjustments? Here are some quick tips.

1. Universal design
   Universal design is the creation of items and/or environments that can be used by as many people as possible, to the greatest extent possible, regardless of an individual’s characteristics. Examples include protected time for personal matters in curricula and clinical placements, multi-modal teaching methods, the use of real-time captions in all online interactions, and flexibility to choose how allotted breaks are divided over a day. Effective utilization of universal design may reduce the need for disabled students and colleagues to access personal adjustments, mitigating self-disclosure, stigma, and discrimination (Petersen, 2020).
2. Commit to accessibility
   Accessible text, images, documents, websites, syllabi, virtual events (including conferences) etc. allow disabled students and colleagues — particularly those who are deaf, hard of hearing, blind or have low vision—to fully participate. Increasing accessibility can seem daunting at first, but there are many online resources to assist you. A useful introduction has been developed by the Australian Network on Disability (A beginner’s guide to accessible content).
3. Advertise, normalize, and encourage the use of accommodations
   Despite the above, people may still require accommodations. I have required personal accommodations throughout the COVID-19 pandemic to allow me to safely practice. The availability of adjustments and pathways to access need to be explicitly stated multiple times and in multiple ways to advertise, normalize, and encourage the use of accommodations. In an Australian study, 31.9% of participants (students with a disability) were unaware accommodations were available and consequently did not receive access (Grimes, Southgate, Scevak, & Buchanan, 2019). It’s important that everyone, not just individuals with disabilities know about accommodations. There is much to be said about adjustments — much more than what can fit in this article! I encourage you to consider how you can make tasks and environments within your graduate program or workplace more accessible. Fostering equity allows disabled, chronically ill, and neurodiverse genetic counsellors to be included. It increases the diversity of our workforce, which improves patient and workplace experiences.

 

Works Cited
Australian Network on Disability, Workplace adjustments (2021) Australian Network on Disability, A beginner’s guide to accessible content. (2021)
Bonaccio, S. et al. Journal of Business and Psychology, (2020)
Grimes, S., et al. International Journal of Inclusive Education, (2019)
Office of Parliamentary Counsel., Disability Discrimination Act 1992.
Petersen, K. Disability as diversity: a guidebook for inclusion in medicine, nursing and the health professions (2020)
The Exeter Group. National Society of Genetic Counselors Diversity, Equity, and Inclusion Assessment Report of Findings and Recommendations (2021)
World Health Organisation. Disability and health. (2020)

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