William, I love this! I inserted the “or physically”, printed it, and hung it by my computer.

I feel kinda jealous I didn’t think to add it myself.

YES Thank you so so much for writing this. Thank you also for bring disability to Feministe. Thank you for pointing out the overlap between disabled and able-bodied, the complexities of those identities and why the ADA-appropriated definition of disability doesn’t work for all of us.
Thank you.

Thats what human beings are, we’re experience and baggage and idiosyncrasy. Our past and our internal lives influence the ways in which we see and interact with the world. To suggest that somehow having an experience which has made you emotionally [or physically] unique invalidates what you might have to say is to silence the whole world.

William, I love this! I inserted the “or physically”, printed it, and hung it by my computer.

interrobang #62 says:

I also think the social model leaves no room for people like me — the “angry cripples” who don’t want to hold hands and sing. I’m more of a “rage, rage against the dying of the light” kind of person, honestly.

I can’t speak to the social model, but I am curious if you feel that way about society in general? Because my experience has been that, when I identify as disabled to a random person (like a store clerk) for assistance or to bring a problem to their attention, far more often than not they assume I’m angry.

and:

…it’s hard to be socially functional (let alone nice to anyone) when everything hurts. Don’t believe me? Try it sometime.

On the chance this comment was directed at my post I want to apologize if I gave you, or anyone else, the impression that I believe everything would be better if we’d all just be nice enough. I don’t believe anyone can nice their way into structural change.

FWIW, I know my version of chronic pain. For over a year, I lived in a chair because of pain. Other than to go to the doctor’s office, literally the only place I went was 15′ away to the bathroom. I’ve improved distinctly since then, but I still suffer both the pain and the demons that accompanied it (depression, isolation, insecurity, vulnerability, rage, frustration, despair). Chronic pain is one of my constellation of physical and cognitive disabilities.

I’ve had a prominent neurologist proclaim that, because he couldn’t identify what was happening to my body, it must be psychological and had important supports withdrawn as a result. (Later, it was discovered to be a physical illness he (dis)missed.) I’ve been so isolated the only people I’ve seen for 2 months are people paid to come assist me. I’ve been neglected/abused by caregivers and taken advantage of financially. I’ve gotten lost in my own home (not disoriented; lost). I’ve not recognized my immediate family.

Through this, I’ve brushed up against suicidality. By not choosing that path, I had no choice but to cut one of my own. Is this intended to be motivational/inspiring? Oh, hell no…there’s no nobility or Lifetime movie to be made of my story. I wouldn’t wish this on anyone and, given the opportunity, would trade it in without a second thought. Am I a better person because of it? Not even a little.

What I am is a different person. One who continues to learn who I am and how to live with disabilities. I know I wield those disabilities imperfectly. Largely because of that, I’m willing to assume other people wield their ignorance about disabilities just as imperfectly. No kumbaya. Just the benefit of the doubt.

Can that hurt? YOU BET! Jemima #55 aptly covered that. There is no shortage of judgment anywhere. (And kudos to amandaw for going the extra mile to minimize it in this space.) But there’s also opportunity. I know very little about the deaf community. But from anon/peanut butter’s #64 I now know that one thing I can do is check to make sure my DVDs are captioned and when they’re not, fire off an email. (How about: “Can you please tell me who to contact to be notified about the exchange program you’ll have when a captioned version of this DVD becomes available?”) And from myriad #68 I’ve learned that a post, something I take for granted even if it does take me awhile, can require a sort of personal bravery I associate with a completely different context.

Am I ignorant? Guilty on all counts. But I can learn. It may not be pretty, and I’m unlikely to do it as thoroughly or as quickly as some would like. But I can learn.

I keep coming back to something said by the first feminist activist I ever encountered. She came to speak at my college (back when typewriters still healthily outnumbered personal computers). I don’t remember her name or the topic. But when i sat down after her talk to type up a letter to the editor, she came over and said something to the effect:

Honey, you can masturbate those keys all you want and it won’t give you the satisfaction you’re looking for. Good activism, like good sex, is one-on-one.

At the same time, there are very few places where I feel comfortable acknowledging my illness, because so often it is used to discredit: you experience disproportionate emotional pain, so you must be stupid, or irrational, or unable to perceive the world and reflect on it accurately.

I’ve always found that fucked up. We act is if madness precludes your thought from having any claim on reality, but the lack of historical insight required to maintain that kind of lie is baffling. I mean, Freud died by suicide and developed his theory largely from his own damaged childhood, Jung had a psychotic episode after WWI, Melanie Klein first came to psychoanalysis as a patient after a lifetime of pain, its appears as if Foucualt’s work was strongly influenced by his sexual kinks. Thats what human beings are, we’re experience and baggage and idiosyncrasy. Our past and our internal lives influence the ways in which we see and interact with the world. To suggest that somehow having an experience which has made you emotionally unique invalidates what you might have to say is to silence the whole world.

That isn’t necessarily a total negative, though – I think depression has helped make me more empathetic and increased my humility. At the same time, there are very few places where I feel comfortable acknowledging my illness, because so often it is used to discredit: you experience disproportionate emotional pain, so you must be stupid, or irrational, or unable to perceive the world and reflect on it accurately.

i’ve had a really long process with accepting that i am disabled, and still get told by many that i’m not, despite being on ssi. my first journey was accepting that mental illness (for lack of a term that i like better in this context) can count as a real disability, and that i wasn’t just being lazy. it took so long to think that i was disabled (which i often thought of as “real”, so that says a lot), even though i’m extremely debilitated, and often can’t leave the house. i never eat well because it’s really difficult for me to get to the grocery store, let alone cook.

i’m sort of having a second journey nowadays, realizing and validating that i do have chronic physical pain and fatigue and am allowed to accommodate myself on that. i am not completely debilitated by it, and am in much better shape than most of my friends. i take the stairs, walk a lot – so i can’t “really” be disabled. but i’m coming to realize that just because i am able to override my safeties sometimes, and am not used to allowing myself to rest, does not mean there’s nothing going on. i’m still not sure – and feel like if i can walk up to my 4th floor apartment on a good day, i must be okay – but really, saying that feels like a way of invalidating myself. plus some of my mental conditions (dissociation) help me to ignore physical factors. at the same time, i want to acknowledge that i may not understand what it’s like to not be able to push through the pain, or to have it more constantly than i do. definitely don’t want to encroach on anyone’s space by saying i am physically disabled.

every therapist i’ve ever had has encouraged me to believe i will one day be “cured” and able to conform to societal expectations. it has been incredibly freeing for me to encounter the social model of disability and the idea that i don’t need to be cured, that i just need to be able to participate, and it’s not all me that’s preventing that. i think especially for my condition/s (dissociative identity and ptsd) the medical model makes it about cure – and cure can get confused with healing – but realizing that i won’t be “cured” feels like hope to me. whereas i think my therapists are trying to give me hope with the idea that i will one day be cured.

i know this is getting too long, but the last thing i wanted to add is that in my life this defining disability discussion reminds me of trying to define what constitutes abuse. people use a very narrow definition of abuse to invalidate, to otherize, to say it doesn’t happen often. i am very much in favor of a wider definition. at the same time, it does frustrate me when people tell me they understand what my life is like because they had x experience, and they could put it in the past, so i should be able to as well. seems very parallel, hope that observation wasn’t too derailing.

anyway, very helpful for me to read this – i need all i can get to feel like i might be “real”, after all. thanks.