On being geeky, disabled, and also kinda smokin’

This is a guest post by Cecily Kane. a writer, business professional, and sci-fi and fantasy geek. She blogs at Manic Pixie Dream Worlds , where she reviews books, talks speculative fiction, and rants regarding intersectional feminism, sometimes even coherently.

I am a geek, and a writer, and was born with a mild disability — thumb hypoplasia, type II/III.

Effectively, on my right hand, I have five fingers and no thumb. I possess a digit that looks quite thumb-like but has no thenar muscles, no flexor tendons, and an undeveloped joint — in short, it is devoid of all of the manual characteristics that make our species more highly evolved than other mammals.

There are many jokes in my household about my primate status. I make most of them.

I am also right-handed. This makes life awkward at times.

I began to disclose my disability regularly about a year ago, with the new knowledge that birth defects which limit one’s physical functions are, in fact, disabilities. Medical professionals are always curious; this defect only occurs in about 1 out of every 100,000 live births, so meeting me is often their only opportunity to see it. This curiosity does not bother me. I compare myself and my gimpy hand to Nemo and his flappy fin.

When I disclose this disability to men who are not in the medical profession, however, I almost invariably get the exact same response:

“Well, you don’t look disabled. You’re very pretty.”

Given that most of the men in my social circles are other writers, you would think the existence of a writer who is physically unable to write longhand would merit a mention, that there is something more to discuss here than my aesthetic qualities.

You would even think, perhaps, that there’s a smidge of a heroine’s story in there, a narrative of someone who overcomes a serious roadblock in order to pursue her dreams and do what she loves, a protagonist who has a dragon to slay daily.

You would think that authors would pick up on this.

They don’t.

I realize there is some confusion about the difference between a disfiguring disability and one like mine, one that limits my body’s functionality but is invisible unless one knows to look for it. Not that disfiguring disabilities make someone unattractive; I grew up with a beauty pageant queen who was born with half a left arm and half a hand. But it’s easy to see how these well-intentioned dudes who say this exact same thing are trying to reassure me that I’m, you know, bangable or whatever.

For me, it’s brain-jarring. Level of physical ability and level of physical attractiveness are not in the same registers. A dude thinking I am good-looking — well, that’s nice to hear, especially on a day I’m feeling bloated, or when the humidity levels make my hair do strange and awkward things.

But it’s not a consolation for an inability to hold a coffee cup without discomfort, perform common household repairs, use sharp tools safely, write longhand…

And given that this aspect of my life typically arises during discussions of  writing  with other writers , this response — “You don’t look disabled. You’re pretty” — clearly manifests the male gaze, and derails the nature of the conversation:

I transform from subject, writer , to object, she whom  the writer finds pretty .

And it’s not like this agency-removing comment comes from the mouths of unapologetically sexist douchecannons that I’d be better off not knowing. It comes from colleagues, friends, a boss I had once who added “intelligent” to the mix, since I’d just found him a rather substantial tax credit for hiring the disabled. Several of them are even male feminists and allies. However, I’m pretty sure it’d take an entire Women’s Studies 101 class to give any of these dudes the beginning of a clue about why “You’re pretty” is a head-spinning non sequitur and not, despite its good intentions, an appropriate response to a disability disclosure.

And so my response to these guys is, likewise, always the same. I smile and say:

“Thank you.”

19 thoughts on “On being geeky, disabled, and also kinda smokin’

  1. sashafeather

    Perhaps you’re not in a place where you want to challenge these people, but maybe someday you will be, and personally I think it’s worth challenging people. Some of them will rise to the challenge. Some phrases you can use:
    “Oh, so disabled people can’t be pretty then?” or
    “Oh, I don’t think being pretty has anything to do with it.” And then let the silence sit awkwardly while they flounder.

    Sometimes just a small dropped comment like that, a little correction, can really be food for thought for people. Even if it’s not the person you’re talking to, a bystander might hear it, be listening, and remember. I’ve heard activists and professors do this sort of thing and it really stuck with me.

    Best of luck.

    1. cecilykane

      Thank you. Eventually I imagine I’ll come up with and start using a pre-loaded reply, now that I’ve managed to contextualize the Fox News-worthy logic fart of this whole situation.

      For now I think I could write a thousand-word essay, because I think there are two interesting things going on here:

      (1) That the male gaze has so infiltrated our social fabric that even male feminists/allies go into this gendered logic system failure at what, I think, they find an uncomfortable topic.

      (2) That many people, I think, find something uncomfortable about disability in the first place, about the very concept.

      Of course I know that people who use wheelchairs or with other clearly visible handicapping disabilities are often treated differently by a substantial portion of their peers; this is not something I ever had to endure. However, what I find interesting is that I refer to my disability no more frequently than I ever did; I merely adjusted my lexicon. I used to call it a birth defect, and the responses I received were either (1) mild curiosity, or (2) mild disgust (no more so than with someone who is, say, very double-jointed; a thumb without all the attach-y bits moves in some weird ways). There was no rush to change the subject, and certainly no automatic reply of the dude telling the woman she is pretty. Many men probably consider this a socially safe thing to say in most situations; it’s a culturally encouraged thing to do, and to accept.

      I am reasonably confident that this discrepancy is due in part to the fact that people are immune to (additional) birth defects, more or less, but no one is safe from disabilities, ones much more handicapping than mine. On some primal level, we all know that we are one accident or disease away from quadriplegia, blindness, brain injury. And of course, the majority of human beings experience varying levels of ableness at different points in the chronology of their lives.

      And so the very word “disabled,” perhaps, reminds us of aging, of loss of the body, and of our very human frailty.

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  4. Hazel

    This is a great post. I’m always glad to see this and other feminism-focused blogs address disability specifically.

  5. Dotan Cohen

    Hi Cecily, I was born with normal thumbs but disfigured the right one in an accident. Like you, I look normal but cannot the very digit upon which rests our whole “leave the trees for the cities” campaign as a species.

    During my years in university I can up with the solution of mounting regular ballpoint pens inside wide glue tubes, and holding the tube with the webbing at the base of the thumb-indexFinger conjunction. It looks funny, but I can write with it. If you are interested I’ll send to you a photo of the contraption, or I’ll even make one for you to try. I’ve left my email address when posting, but I’ll pop back in in a few days if for some reason you can’t get to it.

    1. cecilykane

      You’re a sweetheart, and thank you. :D I’d be interested in seeing photos, sure! I’ve tried a few homemade contraptions over the years. Since I recently had the joint surgically fused (it was degenerating pretty rapidly) and a tendon rerouted to give it some more functionality, it is re-learning its way into the environment and I’m back in experimentation mode.

      I’ll shoot ya an email through your contact form. Thanks again!

      LOLed at “leaving the trees for the cities campaign.”

      1. macoafi

        On a similar note, have you seen the PenAgain? It was recommended to me for my own hand problems (you mentioned double-jointedness as a thing most people are familiar with in your other comment, and I have Ehlers Danlos Syndrome, so even my knuckles bend backwards), though I haven’t tried it yet. It seems to rely on the thumb less than ordinary pens, since it’s basically writing from your fingertip.

      2. Dotan Cohen

        Cecily, my contact form is inactive (I switch web hosts and haven’t looked into it) so just email me. I’ll get around to fixing that disingenuous contact form soon, though.

        I have the PenAgain and was very excited the first time I saw it. However, after a short time using I’ve discovered that the calipers are way too thick and hurt my index and middle fingers from the lateral pressure on a part of the body that did not evolve with loads in that direction. I suppose that a thinner, softer version would be better but I’ve yet to improvise one.

        Note also that the ink cartridge in the PenAgain is terrible, and I had to replace it with a modified Parker (actually not difficult to do). The PenAgain is a great idea but a terrible implementation.

        1. cecilykane

          Mac, thanks for the tip. I’ll probably give it a shot. It might be worth it to have more than one substitute that can be rotated.

          Dotan, I’m not an admin of this blog, so I can’t see your email. You could maybe link to the pictures in the comments section of my blog? Gah, but the spambots that steal our email addies from websites make communication difficult.

        2. Mary

          Re hiding email addresses, even without spam there would be harassment issues for commenters on this website if we made emails public.

          I’m an admin of this website and can see everyone’s emails. Dotan, since you have already invited Cecily to email you, I will provide Cecily with the email you used to comment above, which should allow you two to make contact.

  6. lizhenry

    I may smile sometimes to change the subject and defuse the situation, but it isn’t my internal reaction. I am trying to find other ways to let people know their reaction is…. just weird and has let their own bigotry into the air. When that happens to me, it is like the speaker just told me that most disabled people are unattractive but I get a sort of free pass that disses a huge bunch of other people with disabilities or who use wheelchairs. It drips with pity. It creates a line where there are these other PWD who make the speaker uncomfortable who are somehow bad while I am assuaging their feelings merely by …. some random quality I don’t have any control over, plus their privilege. It is inherently divisive of disabled people’s political solidarity. I’ve had people tell me I’m lucky that my partners still like me “despite” my disability/wheelchair as if I should be specially grateful. And, as if I give a toss about their judgement of my physical appearance or attractiveness! It manages to be condescending, rude, judgmental, and politically disempowering on many different axes at once. I get that you are coming from a place of positivity and bridge-building or simple graciousness at accepting a compliment. And I’m glad you are at peace with it. For me a reasonable compliment would be something more specific or true like “I like your hair” which completely lacks that “you’re disabled BUT you’re pretty” aspect. On top of all that, after 20 years of wheelchair use I am aware there is a whole class of people who fetishize disabled people especially women who are amputees. I hate to even type the word “devotee” because talking about it attracts them. I also think my non-smiling and thanking reactions can come from a place of my own privilege. Anyway, it is complicated!

  7. cecilykane

    It’s definitely complicated. I definitely agree that there’re some privilege blinders going on in the comments about attractiveness and I think our differing internal responses could relate, in part, to the visibility differences (i.e. because my disability is invisible and yours is visible). I’ve never had to worry about receiving the sort of asinine and vile comments that you refer to, so we’ve got different frames of reference going on.

    I’m going to try to pretend I never read that bit about, you know, amputee fetishism. Lalala!

    I’ve been working on a series of articles about representation of PWD in SF/F. One thing I’ve found is that there are a lot of characters with disabilities that are depicted as hideous and/or villainous, and positive portrayals are more rare in my experience. So I think there’s a broader cultural framework here. I guess that’s part of why I’m not really bothered (other than brainhurt) about the “you’re pretty” comments; since they aren’t (I think) unkindly meant, and they do not arise in a cultural vacuum.

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  9. Jane Meep

    OT, but possibly useful, especially for writers. You might want to check out the FrogPad2. It’s a one-handed keyboard, currently in beta. (I’m still waiting to get the prototype that was supposed to come out the beginning of March. No, I’m not on payroll. Just like gadgets. And, my right arm has decided to go gimpy on me after all these years.) It’s probably going to be popular with gamers, and folks seriously into multi-tasking. http://store.frogpad2.com/

    1. cecilykane

      I will definitely be checking that out. I don’t type in the standard way because of my gimpitude; my left hand does about 80% of the work as it is.

      Thanks so much!

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