The Meaning of Underrepresented Minority

Disability often forgotten as Underrepresented Minorities in the workplace

Tomorrow is Rare Disease Day so it would be a good day to raise awareness of a constant struggle that I have in the (academic) workforce as a student, post-doctoral researcher and now as faculty at Yale. A lot of rare diseases can cause a range of disabilities such as physical, sensory impairment and also sometimes invisible disabilities such as cognitive impairment. I have a rare form of muscular dystrophy, which requires me to use a walking cane for very short distances and a wheelchair for anything further than say 100m of walking. The internet/information age that we have been living through has been a great equalizer for those with physical disabilities as this knowledge economy has opened a range of professions that are more suitable. One of these is scientific research particularly on the analytical side. The pandemic period (2020-2022) highlighted alternative ways interactions can happen that have also made the workplace more equitable for those with physical disabilities. However, many workplaces and professions still have much improvement such that “Equal Opportunity” can be more than just good sounding words and an actual reality. I’m going to share two recent examples where things could be better and also two examples of showing leadership in this area.

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American Neurological Association (AAN) Conference 2023 – Disability does not magically turn on and off

I was invited as a conference session co-chair at this year’s AAN 2023 conference in Boston.  I will also be presenting some of my lab’s research at this session. When I travel to conferences, I need to travel with someone else due to struggles to do simple things that others take for granted. This also requires me to have assistance when at the conference itself. I elegantly explained this need and typically do not have any issues with conference organizers offering a complimentary conference registration for the person that will assist me during this conference. This was the FIRST TIME the conference organizers only offered a registration for JUST the session that I was attending. I had to politely let them know that my disability does impact how I get to and leave the conference venue. In addition, it would remove opportunities for me to attend other sessions and also network. It is difficult to explain the obvious to people with no common sense, empathy and compassion. I expected better from a Neurological association where its members look after patients like me every single day!

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Human Genetics and Genomics Gordon Research Seminar 2023 – Disabled people are underrepresented!

I was invited as the keynote speaker in the upcoming Gordon Seminar series. This is a small meeting held just for the trainees (students and post-docs) prior to the bigger conference. I was invited to this in 2018 and at the time struggled to convince the trainee organizers on the meaning of minority. If we break down the general definition of underrepresented minority (URM), it’s a group of people that are less in numbers and are not represented. It’s pretty simple but they didn’t seem to understand when I pointed out that their photos from each year of this meeting are not full of people in wheelchairs, in fact there is not one single person in the photo in a wheelchair! They did make an allowance at the time and provided additional funding, due to my title of being a Professor at Yale but that was not the point. It was to advocate and be a voice for trainees and for there to be something in place next time. When I enquired this year whether the Carl Storm fellowship would take a more inclusive view beyond racial URM, I was upset that nothing had changed. According to the NIH, those with a disability are underrepresented in the biomedical research workforce but there is still a long way to go for this information to sink with those in leadership roles that can make a difference.

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Yale University – True spirit of equal opportunity

I am typically complaining about Yale University and their leadership being so outdated and old that they think Twitter is a game where you throw birds at pigs! Jokes aside, Yale has impressed me with their stance and more so their actions on equal opportunity in the scientific workplace. When Dr Justin Cohen finished his PhD, it was difficult for him to find opportunities to do his post-doctoral research training in the North East so he could still be close to family. A lot of people looked at the wheelchair and just made excuses why there wasn’t an opportunity for him at their research institute. They only see the accommodations they have to make and see it as a challenge someone else should take on. Yes, that’s discrimination and yes there is a law against that but difficult to prove! It is often a struggle for those with disabilities to get employers to look past that. I have a disability myself so it was easy for me to look past the wheelchair and see a talented and extremely motivated young scientist. Yale equal opportunity office agreed that for Dr Cohen to HAVE an equal opportunity to thrive and be successful as a scientist at Yale that he would need various accommodations including an aide to help perform the experiments that he had designed. This then allowed me to plan and train for Dr Cohen’s future in scientific roles that didn’t require doing experiments at the bench so he could be fully independent and not need this in the future. 

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Chan Zuckerberg Initiative (CZI) Grant Portal – Change can indeed happen overnight, literally

Philanthropic funding in the United States is becoming a critical funding source for those in biomedical research, particular rare disease research. The funding from CZI is most known for their enormous and generous support of the Human Cell Atlas work that is going on, which is considered by some as the Human Genome Project of our generation. What is not known by all is the impact of their aim to support a more diverse workforce and participation of non-European research participants. When I was applying for a grant in 2021, I was really disappointed that disability was not included as an underrepresented category. I reached out to CZI via twitter and email. I was expecting the best that I could hope for was a change in future grant applications. CZI went above and beyond the responses that I have received so far. They didn’t just say sorry for the oversight and they would do better in the future but first required to discuss the obvious in endless committee meetings. Instead, they actually changed the grant application portal overnight so I could select disability in our group’s current grant application!

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I hope the last two examples give hope that change can happen and that disabled people can be recognized as underrepresented minorities in the workplace. We are not asking for a hand out but rather an equal opportunity so we can best do our work and have the same career opportunities as our more able-bodied peers. For those in leadership and/or with the power, please know that lasting impactful change can happen very easily with just one kind gesture!