16 August 2015

Inclusivity for Aspiring Disabled Scientists

Over the course of my first year in graduate school I have had wonderful conversations with brilliant women scientists about their unique experiences. These conversations have caused me to reflect on my own experiences in turn. Although I’m not a woman scientist, I am a disabled scientist, and the two share some similarities including feelings of discrimination by others, whether it’s intended or not, and apprehension caused by fear of being stereotyped. Also, it needs to be said that these feelings aren’t unique to women or the disabled; they are often shared by many minority groups including those of different races and ethnic backgrounds. However, for the remainder of this post I will focus solely on my experiences as a disabled scientist. I hope that you, the reader, will come away a bit more informed than you were going in. Also, I hope that you come away asking yourself whether institutions are doing enough to encourage inclusivity for disabled individuals who yearn to be researchers, and what, if anything, ought to be done.

Before I get any further I must first talk a little about myself. I have Moebius Syndrome. It’s a very rare congenital neurological disorder characterized by underdeveloped VI (Abducens) and VII (Facial) cranial nerves. Hence, those of us with Moebius lack all forms of facial expression; this is evident to others in our inability to smile. However, there are other symptoms that may be just as evident: we can’t frown, blink, nor move our eyes side-to-side. Others, including myself, have limb abnormalities caused by associated syndromes; I don’t have fingers on either hand, I’m missing toes on my left foot, and I don’t have a right foot at all and compensate by wearing a below-the-knee prosthetic leg. Lastly, due to our inability to move our mouths in a coordinated fashion, we often have speech difficulties.

I’ve learned a great many things about myself, and the human condition as a whole, by viewing the world through the lens which Moebius has afforded me. For instance, I’ve learned to cherish the differences in everyone, and I find it abhorrent when differences are used as a means for discrimination, in all of its forms and stripes. On a similar note, I’ve also learned that in all of us there is a propensity to be unaware of our blind spots where biases often stowaway. However, the most important thing I’ve learned is to be honest with myself about my disability. For when this happened I also learned to be honest with myself about all other aspects of my life; for all honest self-reflection that came afterward fell short of the realization that I live with something that I can never change. I’ve learned to use this constant in my life as a source of strength, and in this way I feel incredibly grateful.

Despite all of that I still have doubts and concerns that seep in. My greatest concern in practicing science had been how people perceive me and my ability to do good science. Would they think me capable as everyone else? Would my inability to smile come off as disinterest when talking science with others? These doubts were worrisome when I first wrestled with the idea of applying to graduate school, and particularly worrisome in the recruitment process. I certainly felt like I had more to prove than the cohort around me. Ultimately though, my desire to be true to myself and follow what I love was greater than the summation of my apprehensions.

Hindsight is a wonderful thing; now I can look back on my experiences and try to learn from them. Since I accepted my program’s offer, I have wondered if the majority of other disabled scientists have followed a similar path as myself. Also, I am particularly interested in knowing how many disabled individuals have discouraged themselves out of not approaching STEM fields in the first place. This all brings me to the question I would like to ask you, dear reader: do you think we are doing enough at the institutional level to dismantle “barriers to entry” into STEM fields for individuals with disabilities? I realize that many institutions have diversity groups made up of students and faculty who support and encourage minority students, while simultaneously acting as liaisons between these students and the institution itself. However, how many of these groups seek to encourage disabled individuals who may be apprehensive about joining in the first place? Moreover, how many of these groups are actively trying to foster a culture within the institution that is disarming and welcoming to the hesitant, yet qualified, aspiring disabled researcher through support and accommodations? Looking back on my own experience, and on data provided by the NSF showing a severe underrepresentation of disabled individuals in STEM, I don’t think enough is currently being done.

I think a great start to tackling these problems lies within outreach to the disabled community of aspiring scientists, at the secondary and post-secondary levels, by those of us who are disabled. This is a goal of mine as a graduate student and researcher at Michigan State, and beyond. If I can help knock down the boundaries that even one disabled individual has, then I will have succeeded. Further, I think that institutions and campus diversity groups ought to closely examine their own inclusivity policies, and brainstorm ideas on how to focus more on easing apprehensions of aspiring disabled scientists and researchers. On the whole, I hope that these words will spark a dialogue about the underrepresentation of disabled individuals within STEM and what we can do to change that.