Where Are All the Disabled Scientists?

I decided to talk to some disabled researchers, academics, and more to find out more about the specific problems disabled STEMers face -- and how to fix them.

May 1, 2012 at 5:00pm | Leave a comment

“Where are all the women in STEM1” is a refrain I hear frequently, largely because, hey, there’s a serious lack of ladies in STEM, and I hang out with a lot of ladies, and some of them seem to have a problem with the fact that they aren’t well-represented. Lots of theories are proposed, ranging from the asinine “Well men and women are just different” to the obvious “Well, sexism plays a role in whether people are encouraged to pursue an interest in science.”

There is, in fact, a lot of great discussion about how to increase the number of women participating in STEM, and much of that is coming from female scientists talking about their own experiences and how to resolve a continuing issue. Whether they’re at conferences or publishing in academic journals, they’re challenging traditionally male-dominated aspects of the sciences, and demanding reforms to put a stop to sexism and bro culture in their fields.

I’m also interested, though, in the representation of people with disabilities in STEM, and my interest was particularly piqued by a set of National Science Foundation statistics breaking down participation by a number of different minorities. What I found, looking through this data, was that people with disabilities are severely underrepresented, and I decided to talk to some disabled researchers, academics, and more to find out more about the specific problems disabled STEMers face -- and how to fix them.

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Albert Einstein had learning disabilities. Photo from the Glendale Public Library.

Kit, who was forced to stop pursuing a degree in mathematics, spoke via email about the problems facing a lot of disabled students seeking STEM degrees, although these problems are by no means limited to the sciences:

When I returned to university after dropping out the first time, I got an appointment with the disability team (automatically probably, looking back). I asked them what they could do to support me. They asked me what I wanted. I said I didn't know what was available, and asked again. I left the room with no support, no follow-up appointment, and no knowledge of what I could do to make that time work better than the previous. I dropped out again within a term.

These kinds of experiences are common for disabled students, many of whom don’t know what kinds of accommodations are available, so they don’t know what to ask for. When disability services representatives fail to provide information about the spectrum of options, students are left frustrated and turned off, and they’re unlikely to follow up.

Simple information about accommodations like more time on tests, attendance flexibility, assistance with making appointments, and help with transportation, food, and other tasks of daily living would be beneficial, but often isn’t on the table.

Kit doesn’t intend to go back to school, frustrated by three separate attempts at a STEM degree. This is a chronic issue among students with disabilities, who have a much higher dropout rate than nondisabled students.

Kimmy, a science professor, discussed her struggles throughout school as a student with learning disabilities:

During my postdoc, all of [my learning disability-related issues] made me a target of absolutely unimaginable abuse from my postdoc adviser and my fellow postdocs in the lab. I was excluded from lab decisions and publications and snubbed socially, and any tiny misstep was harshly reprimanded and closely scrutinized...This was the sort of abuse that not only almost drove me out of the field; it very nearly drove me to suicide.

She’s settled in to a tenure-track position after hard-fought battles, but she still notes the lack of representation of people with disabilities in STEM: “Other than Temple Grandin and Stephen Hawking I can't think of any PWDs I know of at the Ph.D. level in the sciences.”

However, she points out, part of the issue involves living in stealth; she’s not “out” at work and many of the people I interviewed indicated they concealed their disabilities as well. This means that some scientists may appear nondisabled, but could have learning disabilities, mental illnesses or other non-evident disabilities. When there's pressure to conceal, it's hard to get accurate statistics on representation, or the kinds of accommodations that might help STEMers work more effectively.

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Stephen Hawking is probably the most high profile contemporary disabled scientist. Photo from NASA.

For people with physical disabilities, “passing” is not an option. Jenni, who had to leave a career in STEM due to disability-related issues, had to be out to her colleagues because her disabilities were evident, and she often needed assistance in the lab.

“It's incredibly draining to have to constantly ask for help with what seem to be the simplest of things, especially when it’s the nth time that day,” she said, talking about difficulties with access and accommodations.

Sasha Feather, a research study collaborator with a chronic illness, stressed that some of the problems when it comes to inclusion in STEM involve fundamental attitudes:

...persistent attitudes in medicine and science are not always compatible with the social justice model of disability. Many geeks like to think that bodies are machines that can be fixed, and that medicine has all the answers. Learning that this isn't true might cause a disruptive shift in people's world view.

Kimmy echoed this, talking about the approach to disability in academic settings:

...there's still this quiet undercurrent of opinion that regards LD as a synonym for "less intelligent" and ADHD as overdiagnosed and an excuse for being disorganized and unmotivated.  There's even a certain amount of quiet joking about things like Asperger's Syndrome.  I've encountered it at several institutions, and it's nothing that faculty members let students see, but I have to say that as a faculty member with LD I feel distinctly unwelcome, and like my tenure prospects might be compromised by being open about my issues.

In Sasha’s experiences in an office research environment, she has problems related to fluorescent lights and bright lighting, both known migraine triggers. And, she adds, a recurrent issue in science labs and offices around the world, where harsh lighting is commonplace and workers may not have an opportunity to adjust lighting for comfort. Those who do speak up may be criticised when requesting accommodations, which encourages them to suffer in silence -- or find other work.

She, along with Kimmy and many other people I talked to, such as Elizabeth, a systems administrator, also discussed the physically demanding nature of the work. STEM jobs tend to insist on long hours with few breaks, which can make participation difficult for people who have limited energy reserves. Work environments often require standing for extended periods and performing other physically complex tasks. Although equipment is available to facilitate accessibility and make labs more comfortable, such as wheelchair accessible lab benches, it often isn’t provided, sometimes because no one thinks to provide it. 

Kimmy said that her experiences were  generally positive, working in small labs with close-knit groups, but that she was still required to ask for accommodations because no one had predicted or considered the need. This can be a turnoff for people with disabilities, as an inaccessible space is an unwelcoming one.

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Temple Grandin is another well-known disabled scientist. Photo by Steve Jurvetson (Flickr). 

For people who acquire disabilities later in life, like Andrea Chandler, the shift in attitudes in the workplace can be devastating:

...before I became a visible cripple with my cane and needed time off for medical stuff, I was assigned to projects where my technical expertise was used. After, I was assigned to be a secretary to engineers...I will not go back to work in a STEM field if I can help it. Between the shit I got as a woman, where I constantly had to recite my bona fides to prove I had the technical expertise to contribute and then becoming a crip and finding there was no way I could be accepted anymore, I'm done. It kills your soul.

“Since I live in the United States, every single career choice I've made ever has been shaped by my need to have not only health insurance but good health insurance,” Elizabeth told me via email, highlighting yet another barrier for people with disabilities working in STEM fields. When your career needs to be based on access to benefits, your options can be limited, and you may be afraid when it comes to advocating for yourself in the workplace, protecting team members, and fighting for better working conditions, because you would risk losing your benefits.

Talking about accessibility in STEM, Sasha Feather said: “I would like to see accessibility become something that everyone thinks about in regards to presentations, conferences, and work spaces. People's attitudes can be harder to change but that happens with time and activism.” She cuts to the heart of the issue; if better representation of disabled persons is a goal in STEM, it’s time for clear, cohesive, carefully developed accessibility policies to become a norm across the board, making people feel welcome.

Kimmy says:

I think in large part the whole system needs to change. Until people quit being evaluated based on volume (volume of work published in high-impact journals, volume of funding brought to the university, etc.), it's going to be very hard for people with cognitive issues (even if they have high IQs), or health issues that might keep them from working the 50-70+ hour work weeks that are typical for most faculty to compete with able-bodied or neurotypical colleagues. This is a big issue for female faculty who want to raise a family, too.

Addressing the demographic imbalance in the sciences may ultimately be an intersectional project; the same accommodations needed by people with disabilities could also potentially benefit women and older adults starting second careers, for example. Hopefully women agitating for greater representation in STEM can join disabled colleagues and future scientists to address the disability gap alongside the gender gap. 


 

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