Thanks to a tweet from @Namnezia, I read this post: On chronic illness, disclosure, and imposter syndrome. The writer, who goes simply by the name disabledphd, tells of acquiring a "Stupid F'n Medical Condition" (which is how I shall think of the migraines henceforth) as a graduate student. Here's the advice he/she got about whether to disclose this information going forward in his/her career:
The main piece of situation-specific advice I was given was that moving forward in my career I should be very careful about disclosing my SFMC. This advice echoed from every corner I tilted an ear to. I heard it from mentors, from family in academia and from people I didn’t know but reached out to because it seemed like they had solid perspectives on academic careers. It was an amazing show of unanimity – Seriously, you try getting that many academic types to agree on a single issue! And when I thought about it at the time, it seemed completely sensible.
Assuming my goal is a tenure track position, do I really want the fact that I have this thing out there? Even in the best case scenarios, it places an asterisk over my future that committees looking to hire people into lifelong positions might take note of. Probably a silent note, possibly even a subconscious one, but the cold fact is that no one has to tell you why you didn’t get the job, especially amid a glut of qualified applicants. And manifestations of consequence could be more subtle than simply not getting hired. One academic I spoke with noted that colleagues in positions of power might hold back advancement opportunities because they ‘don’t want to stress you out with extra work.’ In the politics of academia, such a decision could be well-intended or it could be nefarious. But in the end, it wouldn’t matter. An opportunity missed is an opportunity missed. I look back at nearly a decade of work shaped by chance opportunities and shudder at the notion.
With that kind of helpful advice, who wouldn't try to
deny one's own reality go into deep cover?
Of course, it eventually proved impossible to maintain a facade of "nothing to see here!" At some point, disabledphd "broke" and told the boss. The description of the fallout is painful to read: not because the employer was unkind or discriminatory, but because of the emotional toll the secret exacted on disabledphd. This emotional toll was not lifted by speaking the truth.
And why should it be? This is what disabledphd says:
So why do I say ‘broke’? Because somehow, without meaning to, I turned disclosure into the null hypothesis of my little experiment. Telling someone meant failure, even if he/she was someone I was all but certain would be fully supportive. This was my own mistake, constructing a psychological Maginot line against a war of my own creation.
There was definitely a failure here, but not on the part of disabledphd.
With secrets come shame. In characterizing the knowledge of disability as a career-shattering demon to be kept hidden, disabledphd's science family made the fact of disability into a personal shame. You can succeed in science - if no one knows you are defective. If you have a disability but keep it from showing, then it's perfectly fine to have a disability. (I can't think what sort of advice would be given to people with disabilities that cannot be hidden. I imagine letters of reference with lines about how "brave" they are and what an "inspiration" they are to everyone around them...)
The flip side of successfully, or mostly, hiding your disability, is that people doubt its authenticity, legitimacy, and/or severity. Regarding migraines, a friend once made the droll remark "if you don't have blood and pus streaming out of your ears, no one thinks it's serious." Tell us about it: we'll punish you. Heroically manage it: we won't believe you and you'll punish yourself for us. Yay. Great choices.
No matter how well-intentioned the advice givers were, the effect was to cause shame. And, it helped to perpetuate the idea in the larger scientific community that disability is a liability and must be kept hidden. The disability-is-a-liability-that-rules-you-out discourse facilitates the agenda of sexists who label pregnancy as a disability and cite it as valid reason for discriminating against women. If you don't buy that discourse about pregnancy but you do about disability in general, you are undermining your own efforts to support women in science. And hey! Some people with chronic, invisible disabilities happen to be women! Lots of them, in fact. Intersectionality!
We've seen, in the past week, the poisonous effect secrets and shame have wrought in the scicomm community. (#ripplesofdoubt) When someone is raped, abused, harassed or mistreated in any manner, they are often asked to keep quiet about it, for the sake of someone/something else - someone's job, keeping the family peaceful and intact, whatever. But when we ask for quiet we are asking to keep things just like they are right now. Right now, when white people say we're "post-racial" and find clever new ways to discriminate; when women must hide abuse and assault or face more harassment; when people with disabilities need to live like they don't have them in order to obtain "equal employment opportunities".
If you are in a position of power, and you ask someone to keep a secret rather than telling them "I've got your back", you are laying bricks in Oz. And Oz doesn't need any more help. It's distressing to learn, and keep learning, how entangled we all are in building and maintaining the edifice of our own and others' oppression. It's difficult and scary to stop doing even the little things, and figure out how to do them differently, or better. But we have to try.