Wednesday, May 1, 2013

Blog Against Disabilism Day! My Identitification as Disabled, Mixed With Some Queerness

Hi everyone! I made a post the other day talking about what I might want to discuss, which was basically me being excited and not doing homework because I find this much more important. So, here I am discussing:
  • What terms do I use to identify as Disabled?
  • What internalized disabilism/abelism do I see in myself?
  • Why am I afraid?
Before I begin, I want to thank my friend at Bad Assburgers who absolutely CANNOT make burgers out of asses; I'm sorry, but only bad things happen when attempts are made. Other than that, I am very grateful for not being alone, and I think Bad Assburger has some lovely things to say, so CHECK IT OUT!


So first let's talk about my Disability. (I'm capitalizing Disabililty, by the way, because it's empowering, I can, and why not?) I have cystic fibrosis (CF for short), and we come to my first problem about identification and openness about this. I really don't like explaining what on earth this is, because to me, it and the effect it has on my life is so egregiously complex that I don't feel like any short spiel satisfies it. Should I list the organs that don't work like other people's do? Should I just say "it's killing me!!!" and fall over, writhing on the ground with fake pain? Should I show them the sputum I cough up every day, the stool I excrete when I forget pancreatic enzymes, the faces I make when terribly constipated? I feel trapped; I can show either the bare bones or the relentlessness of a chronic, progressive, life-threatening disease. One doesn't do the truth justice, and the other might scare people away! Usually, though, when I tell people I have CF they might go "oh I heard of that" and then I stop caring what they think, or else I just say "oh it's this sucky genetic thing that sucks" and let them ask questions if they want. So I guess I only use the term "CF" and abut it with a host of vile expletives and graphic descriptions. (Also shush about my sometimes questionable use of vocabulary.)

Internalized Disibilism?

I don't remember telling anyone ever that I'm Disabled, using this word. I usually just say "I have cystic fibrosis" and then whatever. I could say I don't use the word "Disability" itself because it's not as specific to who I am and I want to be honest, but as an identity it's always been available and I haven't really sprung for it. Really, I think the "specificity" "argument" hides my fear of association with the word. Similar to how I used to be afraid of flamboyant, gay men (which I kind of turned into... yay!), I do think I fear Disability and the Disabled in general. Aside from some things I frankly should probably just shut up and toughen up about, I fear that I could become more sick with my progressive disease, and be in what generally people consider a worse fate.

But would it be a worse fate? In many ways, the only thing worse would be how many people might treat me--as if I were dying, spreading disease, worthless. In many ways, what I really am is differently-abled: Like everyone else, I can't fly, but I can do damn well plenty. Even if (when?) CF worsens, I'll still have much to enjoy. Sure, the stark difference I see between myself and other humans can suck, but I don't fall apart every time I watch birds soar. I think I can live great with being Disabled.


Plenty! Let's go back to what might be worse about calling myself disabled: other people. Don't get me wrong. I love people. I am out-going. I am energetic, talkative, and happy when I get nice, intimate attention (haven't had sex yet, but I imagine I'd be the bomb--I'd give more details, but that's for another, more explicit post). Cruel, mean, nasty attention sends me from smiling, to confused (why would anyone want to be malicious?), to shooting poisonous vipers from my eyes. Unintentional hurts hurt just as readily, too. While I generally don't find people trying to hurt others, it still happens, and it sucks! Further, I really fear the defensive response to my attempts to explain who I am, what drives me crazy, and how I like to be treated. 

People sometimes have a hard time hearing "I don't like this type of comment." I think it's because they feel vulnerable; they realize they're not perfect, and acknowledging that can sometime be difficult. Of course, they should grow up already, especially considering how, being Disabled, I get that "imperfection"-ness shoved down my throat too often by societal expectations and standards. So really, I fear letting myself get defined by other people; I fear expecting of myself what other people expect, and not the standards I want; I fear letting others decide how I should behave, not what I value in personality and behavior; I fear limitations and traps.

I've talked about a whole hodgepodge of things, and while I don't think I've had Dutch stew, I think everything I've talked about fit well together. I've discussed what I wanted to discus. So! Thanks for everyone who read this. I love you! <3


  1. I ABSOLUTELY CAN make burgers out of asses. I just need the right materials. XD

    Thank you for sharing.
    Personally, I prefer not to refer myself as disabled or have others refer to me as disabled. I think when people think the term, "disabled" they think of someone on a wheelchair, and that is not me. I'm high functioning autistic. I just have difficulty in social interactions, but I'm physically healthy.
    I'm not sure if BADD expects autism.

    I love you, too! <3

    1. I just wondered if you've ever read about the social model of disability? It explains disability as something experienced by people with all kinds of impairment (physical, mental, emotional whatever) which is dictated by the society we live in. Someone missing a leg might be less disabled by a society which doesn't rely on stairs and has access to good mobility equipment, while a society which fears mental illness and persecutes sufferers would make someone with even a minor mental illness heavily disabled.

      And in many ways BADD is about sharing a broader interpretation of disability in the hopes of reducing prejudice and of also uniting people who suffer a linked prejudice despite their disparate conditions.

      Anyway, sorry for rambling. Enjoyed the post very much and just wanted to stick my nose in ;)

      And personally I prefer to make asses into sausages. I feel the meat's too dry to hold without some kind of casing.

    2. I haven't really read about the social model of disability. Although I just found wikipedia:

      It reminds me a lot of the modern LGBTQ ideological movement for equality. Historically, a lot of the popular discourse focused on assimilation of LGBTQ people to show that we're not different, and thus we're as valuable as everyone else. This has been quite effective, as much progress has been made in terms of people's thinking and the plethora of protective laws that have been passed. However, many LGBTQ people today (although this isn't new either; it just seems to me more common to hear about it--but then I'm young, it could be just as popular an argument as before) now argue that they are different, and that is absolutely OK; our differences (sexual, cultural, etc.) should in no way be used against us.

      To me the social model of disability sounds like the LGBTQ-differences-are-perfectly-acceptable arguments. The medical model (mentioned in the wikipedia article) sounds like cure-the-gays/ex-gay things people try to do. Although California is trying (or has already) ban(ed) that so that's nice.

      I'm finding a lot of parallels between the LGBTQ movement and the disability movement. I imagine that withing oppressed communities, tactics for overcoming that oppression sound and look a lot alike.

      Also, I wonder what the CF community knows about this. It sounds to me like we've really accepted the medical model bit because so many of us clamor for a cure and relief from cystic fibrosis. Further, we also have certain limitations on our building a community by way of cross infection control. Since bacteria can grow in our lungs, causing a large part of our lung-disease, we don't want to spread antibiotic-resistant germs. So we are often told to stay away from each other, which can easily lead to feelings of isolation.

      On the other hand, we're definitely aware of the importance of community, and with the internet we can definitely stay in touch in ways that weren't possible a few decades ago. We definitely understand each other and do our best to support each other in navigating government benefit systems, medical systems, and the too-often recurring assholes.

      OMIGOSH I talked a lot. I should turn this into another blog post! Thanks for the comments! You've definitely got me thinking!!!