you’re always questioning who i am

I have so many thoughts swirling around in my head right now… it’s hard to grab a hold of them, they’re kind of just floating around and clogging up my to-do list.

Recently, a friend of mine had a call with a few feds about cultural competency [ability to understand a person’s background]. The conversation was about whether disability culture even exists. (She wrote a MUST READ poem about it here). What I don’t think people get is when you question our culture, you question our identity. When you question our identity, you question our history and the value of our community (i.e. what do a bunch of crippled folk find in each other?) When you question the value of our community, you question our personhood.  What gives a non-disabled person the right to question any of this? It’s so offensive to sit there and discuss whether who WE ARE is valid. 

Another thought going on in my head… the whole phrase/sentiment [idea] I hear allies using “oh, in a way, we’re ALL disabled.” It’s frusterating when disability is simply reduced to being something you cannot do. Disability is so much more than a “limited function”… it’s a social status, a history of oppression [one group using power to keep others down], a cultural background, an interaction with nature, a way of life. How offensive would the phrase “Well, in a way, we’re all women” be?? It’s like the lie “Oh I don’t see color” because it ignores the past and current oppression people face, the amount that race plays in every activity, and our own prejudices.

And in an analogy to patriachy [men ruling society] and heteronormativity [straight people deciding what is normal], does disability even have a word for the relationship between disabled people and non-disabled society? I sure couldn’t think of one. That alone makes me angry even though I know the field of disability studies is still fairly new. Hopefully you folks know of one.

Final thought…in feminist literature, Adrienne Rich wrote about how the “special myth” divided women because they all thought that they were better than other women in that they thought like men (and this was supposedly a good thing.) Does this not sound familiar, re: disability? The biggest barrier I think young disabled people face is identifying with other disabled people…from early age, it is engrained in our minds that we are not like other disabled people and there is no need to associate with them. This is grounded in the idea that disability is a bad thing that people suffer and that disabled people only pull society down.  People First language promotes this. This was a really big conversation at the conference I attended this weekend in CT and always has been. Some people kept referring to themselves and others as “handicapped” (hello? the word originates from hand-in-cap? as in a beggar?) while others just kept referring to themselves as individuals (then why are you here?). I can understand the reasons people just want to be just an “individual with a disability” (disability has a lot of stigma) but if we are JUST individuals who happen to live with disabilities, how can we have power? This is assimiliation [trying really hard to become a part of dominant culture] at its worst. 

Why are we letting non-disabled people determine who we are and what we are called? To me, calling myself “Disabled” is not saying I can’t do this or that. It’s crediting disability as something that shaped my experiences and who I am. And aren’t we oppressing ourselves if we can’t claim our disabilities with pride? By hiding our disabilities, we are denying the long battles our community has fought and is still fighting. That’s pretty privileged—I know not everyone is going to be an activist/advocate/whatever else but it’s wrong to accept benefits and rights without acknowledging the sacrifices our community made to get those rights. We can’t expect society to recognize our community if we are so ashamed that we don’t even want to call ourselves members of that community.

Like I said, so many thoughts…


Filed under community, disability

9 responses to “you’re always questioning who i am

  1. And yet so many good and profound thoughts.

  2. Liz

    ”Oh I don’t see color”

    Thank you for mentioning that one. You can adore people of other races, but living in America makes it impossible to not see color.

    Just a suggestion here… you might consider submitting a lot of these thoughts ans ideas to BITCH and VENUS magazines. 🙂

  3. I openly admit that I am not well-read or well-versed on disability studies/culture, and I’ve had my number of eye-opening conversations about it with people who are involved in the culture. What I don’t understand (and hopefully you can explain for me) is the use of the term “disability.” I’m a linguist, so this nags at me. You say, “calling myself ‘disabled’ is not saying I can’t do this or that”…but actually, it’s saying literally that you are “not able.” So…I’m wondering why there was never a backlash against this term and the inherent able-normativity embodied in the term.

    I know that’s a pretty fundamental, probably mundane question, but it’s something I’ve wondered (as an ignorant, yet open-minded person).

  4. good question, good thoughts : )

    there have been efforts to find other words to use than disability or disabled and these efforts have particularly been led by nondisabled people. you have words like disABILITY, special needs, “challenged,” people first language (that puts the person in front of the disability.)

    the problem is rather than reducing stigma [taking away people’s bad thoughts] shying away or censoring the word disability makes it even more of a bad thing, even though it’s not. a good example of this is when hearing people created the term “hearing impaired” because they didn’t want to call people deaf or hard of hearing. a lot of people hate the word hearing impaired because it implies that not having the ability to hear is essentially negative and that being deaf/hh is bad.

    i guess you could call using disabled as a reclamation tactic like using queer or crip but it seems like it’s so much more than that at the same time.

  5. It’s a fine rant. But the sentences “Some people kept referring to themselves and others as “handicapped” (hello? the word originates from hand-in-cap? as in a beggar?)” should be pulled if you decide to publish–that’s a common folk etymology of the term, reprinted in far too many places by people who should know better, but it’s not true. A good discussion of the word’s actual origins (nothing to do with begging) is here:

  6. Zach

    Awesome stuff Stacey. I love, love, love how you link things all together about how questioning our culture, questions our identity, and in turn our community. The link about handicap seems legit. I was actually going to link that to you as well. The author makes the point of saying that handicap is still offensive and is still negative based on its original meaning because it designated a person of “lesser” ability in sport who might need an advantage.

    On the language note of disabled inherently meaning unable to do stuff, I would echo Stacey’s comments as well as adding a few of my own. I’m not a linguist at all. I’m sure you already have heard this argument, but to me words identifying a person or group are always in flux and it is how they are used, who uses them, and for what purposes that makes them good or bad.

    Disabled can be seen the same way as the word “black” can in relation to people of color. Historically, the words black, dark, or other synonyms have been used to designate something that is scary, bad, immoral, etc. Obviously Black People have tried to reclaimed the meaning of that word in relation to themselves. Disabled people, I think, are trying to do the same thing.

  7. I just wrote about St Thérèse of Lisieux (on my blog) and was grasping for ways to define this difference in consciousness (disability), in the way Pope JPII identified so strongly with her, and elevated her status to Doctor of the Church. Many people had a hard time accepting that change in her status, and now I am kicking myself for seeing this totally from a feminist perspective and not a disability perspective, also.

    Also, the Pope was identifying specifically as a disabled/chronically ill person, as St Thérèse was. I didn’t necessarily call this “disability culture”–but now you are making me wonder about that, and if it indeed would have been an example!

    (As soon as I write something, I think “damn, why didn’t I remember to say that?”)


    Was up! What an AWESOME site and person you are. :~)


    Well time to show them how we roll.

    I want to do a Spotlight video of this site. :~)

  9. AbiliTV – All about abilities.

    We choose not to “dis” our abilities.

    Spinergy – Roll with me.

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