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Jan16
Struggling with Internalized Disabilism
12 CommentsThe first time I heard the term disabilism, I winced and rolled my eyes. It’s not that I’m against the use of “-ism”s to describe bigotry. There’s enough bigotry in the world to justify a whole dictionary full of “-ism”s. My problem was more basic: I didn’t believe that disabilism existed. After all, who hates disabled people?
Duh.
Because I live in a culture that teaches fear and loathing of difference, I’ve imbibed all the poison the society has to offer—racism, sexism, homophobia, classism, misogyny, anti-Semitism, you name it. Knowing that I’ve internalized all of this hatred and fear, I’ve spent the better part of my adult life trying to root out as much as I can, secure in the knowledge that I will never fully succeed.
Until I had to deal with the fact that I am a disabled person, it had never occurred to me that I had any kind of bigotry against disabled people at all. In fact, I have a very vivid memory of the day in Berkeley that a young man in a wheelchair called me over and asked me to drain his urine bag into the street. I was happy to do it, and he seemed to have no self-consciousness about it at all. Perhaps he sensed my innocence and knew that I would be nice. I don’t know. All I know is that it’s one of my best memories.
But why would I remember that moment? Well, it made me feel good about myself. It made me feel helpful. It made me feel compassionate. Okay. Are any of those feelings a problem? It depends on what lies beneath them. For me, they were based on a subtext of “Oh, this poor man has to actually ask a stranger to empty his urine bag. On a public street.” The fact that he was gracious, self-respecting, and without shame does not take away from the fact that I thought of him with pity, and I that I felt lucky that I wasn’t him.
If you asked me what I felt when I saw a person in a wheelchair, I’d inevitably say, “Oh, that must be so hard for him.” Or if you asked me about a person who was Deaf, I’d probably say, “Oh, it must be awful not to be able to hear Beethoven.” It didn’t matter what the situation. I felt sorry for people who weren’t able-bodied in the way that our society defines it. Of course, I never thought I was being bigoted, because one of my best friends was in a wheelchair, and as we all know, if one of your best friends is….well, you know.
What does it mean to feel sorry for disabled people? What does it mean that I was glad not to be one of them? What does it mean that my first thought wasn’t about the person, but about how hard, how limited, how sad, how embarrassing, how terrible that person’s life must be? Is that really bigotry?
I think it is. My reactions were based on a stereotype of what a disabled person must be feeling, of what a disabled person must be thinking, and of what a disabled person’s life must be like. What’s missing from all of these moments is something as necessary to human existence as clean air and water. It’s called respect. Respect and pity do not go hand in hand. Respect and feeling sorry for someone do not go hand in hand. Respect and thanking God you’re not like that poor schmuck over there do not go hand in hand. Respect only goes hand in hand with full acceptance, with encouragement, with love for the individual, and with justice. Respect powers life forward. It doesn’t leave it hanging in mid-air while you wring your hands and think, “Oh, I’m so glad I’m not you.”
When I check out my attitude toward myself, I nearly choke on what a toxin disabilism really is. Lately, I’ve finally given in and begun using the “disabled” label to describe myself, as in “I am disabled in the culture in which I live, because the culture does not cultivate my strengths, support my needs, or respect my existence. And just for the record, being disabled does not mean that I’m disordered, broken, or impaired.” Why go through all of these words? Why explain it? Why be so defensive? Why not just say “I’m disabled” and get over it? Why do I feel saying that I’m disabled is “giving in” to some sort of adversary?
Because in some of the deepest places in my being, those places in which the light of rationality and the balm of compassion have not yet entered, I think I’m pathetic. I feel ashamed. I feel broken. I’m one of those people over there: the ones who are always too loud, or walk funny, or talk funny, or look funny, or drool, or make weird sounds, or don’t get what’s going on. They’re the people I used to feel sorry for all those years when I thought I was being compassionate and accepting and helpful. Now I am one of them. Oh. My. God. Now I have to cross the line and say, “Yes, I’ve faked it really well all my life, and now, the facade is gone, and I am who I’ve always been.” I’ve always been autistic. I’ve always been disabled. I’ve always faked my way through everything and wondered why I hated myself so badly in the process.
When the culture tells you that being disabled means that your life isn’t worth as much as the next person’s life, that message tends to engender self hatred. When people talk about a cure for autism, what they’re really saying is that somehow, if you took away the autism, you’d get a person whose life was actually worth something. Well, excuse me, but the last time I looked, I’m the only one who can decide whether my life is worth something. I live in a world that makes it hard for me to believe sometimes, but that doesn’t make it so. Not by a long shot.
As I write these words, I’m aware that I’m making a major shift. I’ve gone from feeling dispirited about everything I can’t do to simply looking at the internalized, cultural messages that impede my ability to feel worthy of love and respect. I call that progress. In fact, in the life of this disabled person, it’s a major leap forward.
© 2010 by Rachel Cohen-Rottenberg
12 Responses to “Struggling with Internalized Disabilism”
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as usual, you give word to so much of what goes on inside myself.
thanks -
John Dale Lyons January 16th, 2010 at 10:00 pm
Low self esteem can come when we have pity on ourselves; when we see ourselves as broken and defective. (I use the plural to include myself, not as the royal we), Having pity can be toxic not only to others but can rebound on the one pitying when s/he discovers the truth about him/herself. But at the same time, pity and Schadenfreude (its kissing cousin) are parts of human nature. So it’s a constant battle within oneself to respect the Other and to respect oneself, including the Other within oneself.
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John Dale Lyons January 16th, 2010 at 10:11 pm
Apologies to Billy Joel. The Other.
Well we all have a face
That we hide away forever
And we take them out and
Show ourselves
When everyone has gone
Some are Aspie some NT
Some are gay and some are hetero
They’re the faces of the Other
And we hate to try them onWell we all feel pity
But we disregard the danger
Though we share so many secrets
There are some we never tell
Why were you so surprised
That you never saw the Other
Did you ever let your Ego see
The Other in yourself?Chorus:
Don’t be afraid to try again
Everyone goes nuts
Every now and then
You’ve done it, why can’t
Someone else?
You should know by now
You’ve been there yourselfOnce I used to believe
I was such a normal person
Then I came home to a mirror
That I could not recognize
When I pressed it for a reason
It wasn’t even certain
It was then I felt the Other
Kick me right between the eyesWell we all feel some pity
But we disregard the danger
Though we share so many secrets
There are some we never tell
Why were you so surprised
That you never saw the Other
Did you ever let your Ego see
The Other in yourself?(chorus)
You may never understand
How the Other is inspired
But he isn’t always evil
And he is not always wrong
Though you drown in good intentions
You should not succumb to pity
Don’t give to acting shitty
When the Other comes along. -
eaucoin January 16th, 2010 at 10:51 pm
I can’t help but think you are being a little hard on yourself here. Maybe you felt good for “helping a cripple” but just maybe it was nice for someone to notice you for your “shine,” instead of the pity or contempt that Aspergers symptoms often bring out in others. This man must be accustomed to having to ask strangers for help, and he is likely experienced at deciding quickly whom he should ask. It is possible that our vulnerability, besides making us a target for bullying, makes us appealing to dogs and children as well as occasionally men in wheelchairs. And that is something to celebrate!
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I understand what you are saying but I tend to disagree with not finding a cure for autism. Autism is a disabilism and if we can find a way for a disabled person live fuller than it should be strived for. I believe that most blind people wish they could see, most deaf people wish they could hear and most people in a wheelchair wish they could walk. I do not have autism myself by my soon-to-be adopted daughter does. She is unable to talk or process most verbal requests. I’m sure she would like to be able to talk or at least communicate. Granted, she has fun but she also gets very frustrated at times. I enjoy reading your blog.
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John Dale Lyons January 17th, 2010 at 11:38 am
Mickey: I agree there should be a cure for severe autism. But mild autism, or Aspergers as it is known, is not as debilitating and is more like a different kind of personality than a disease. If we medicalize too many differences, we could end up with a Brave New World of uniformity.
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There is a sizeable segment of the Deaf community that rejects words like “impairment” and that celebrates Deaf culture. They are quite against the idea that they are lacking anything and do not wish to become hearing people.
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Hawkeye January 18th, 2010 at 1:40 am
As others have noted, sorry, Mickey, but while I’m sure there are lots of people with disabilities who wish they were not disabled, most people I’ve met with disabilities, myself included, do not wish for their disability to disappear, but rather for society to be more accepting of what they/we often see as merely a difference. Rachel’s example of the Deaf community (not just people who clinically have hearing loss) is exactly what first came to my mind.
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Rachel wrote: “I’ve always faked my way through everything and wondered why I hated myself so badly in the process.”
Ah, this stung my heart! Because it expresses so well what I’ve spent much of my life trying to explain to the people closest to me, including myself. But only recently, knowing that I have mild autism, am I able to accept it and begin to set it aside. (Getting others to accept it is still beyond me.)
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On another note entirely: The question of whether we should, if we can, ‘cure’ disabilities reminds me of a similar question that often comes up in the discussion of intersex rights.
Right now, if a child is born intersex, the vast majority of cases are assigned to be male or female and physically modified from birth onward. Many intersex rights advocates believe that we should not immediately modify intersex babies when they are born, but instead allow them to decide for themselves if they want to modify their own bodies when they are capable of making that decision. And if they do decide to modify their own bodies, they can then decide which physical sex best fits their psychological gender — something that doctors and even parents can’t possibly know when the baby is born.
Of course, many people feel that leaving an intersex child as physically intersex is cruel. Who wants to be different? Who wants to be discriminated against? Who wants to have a tougher time in life than they otherwise would have? Who wants to be … well, disabled — at least in terms of the dominant culture?
And the answer is, sometimes, I do. Because I value myself as I am, differences and all. I think that my differences have something valuable to offer. Not all adults who are like me feel the same, but as much as possible we should be given the choice to decide for ourselves.
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aw maaaan, you got into my head again! I’ve been pondering some of these “isms” too, not always easy to admit to some of the less pleasant thought processes that can go on after a lifetime of trying to navigate the stormy seas of an unsympathetic culture.
My mom once told me, when I was still at a too-impressionable age, that she thanked God every day that none of her children were born “handicapped” (the old school word…). This made me regard disability as a calamity and feel uncomfortable around disabled folks for a long time. But then I met a few women with disabilities who have really opened my eyes. Yes, we spoke about disability and they gave a hand up the steep learning curve, but now I don’t see them as “the blind one” or the “one in the wheelchair”. They are “dear friend A” and “dear friend B”. In fact I spend a lot of time basking in their positivity and hoping it will rub off on me (because I have been fighting negativity all my life).
Still got a ways to go with dealing with the “isms”, but am working on it. Your blog is a great help. I cherish what you are doing here. -
I haven’t been very vocal on this blog for some time now, but this post (and subsequent comments) really screams out for me to speak my mind. So here it goes:
I agree with you 100% here Rachel. I can not stand even the concept of disability. Its only foothold in reality is as a social (or group) opinion. These opinions are not formed through the normal process of experience, consideration, and application of reason. They are the result an underlying desire to “fit it” to a functioning social whole. I’ve always found that these are also the opinions that people feel most deeply and they tend to defend them violently when challenged. Most can’t even begin to tell you why they believe in them and when questioned, tend to answer “I feel it in my heart”.
I tend to look at “disabled” people as simply having a different set of life experiences. This gives them unique perspective and means we should be listening to them and learning from a point of view that would otherwise be missed. When “helpful” people go out of their way to help someone who is “disabled”, they are deciding what that individual’s abilities are rather than them deciding for themselves. This does nothing but tell that “disabled” person to stop trying exploring their abilities and get back in the proverbial social pecking order. To me, this is complete and total RUBBISH!
I remember a day last year when my wife, son, and I were returning to the car hiking to the summit of a 6640 ft high peak in the Smokies. In the parking area, there was a young girl of maybe 6 or 7 that had a prosthetic leg from mid-thigh down. This wasn’t a fancy covert plastic job but rather a raw metal mechanical looking sport leg. My 6 year old son saw her and of course asked about it. I explained to him to not ever feel sorry for her or anyone like her. As she was about to undertake that difficult climb, I doubt that girl had even the slightest desire for a normal limb. Her desire was for the challenge and the feeling of achievement when she succeeded. The same thing that anyone who hikes and climbs wants. Regardless, it was her place to decide what her abilities were and she was lucky enough to have parents who let her make that choice rather than making it for her.
Comments like Mickey’s regarding a cure for autism make me so angry and frustrated. I mean seriously! How is it anyone’s place to decide the appropriate “fullness” or “richness” of anyone else’s life? Let them decide for themselves. Mickey, I would argue that it is you that would like for your soon-to-be adopted daughter be able speak and to communicate. I’ve found that even many of those with profound autism communicate quite effectively. They just don’t do it in a format that NTs are familiar or comfortable with. Learn to listen to her language rather than expecting her to bend to yours. Her likes, dislikes, and limits should be for her to decide, just like everyone else.
I can’t usually go to a restaurant and I panic in check out isles. I hear weird sounds in the white-noise the dishwasher makes. I can taste trucks as they drive by and the texture of my shirts sometimes makes me completely nuts. But still, I dare anyone to come to me and find what it is about me and my AS that are even in need of a cure. To do so would be to say that their way of perceiving the world is somehow superior to mine and it is that sort of thought that leads to hatred and wars, not enrichment and understanding.
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Jennifer January 21st, 2010 at 11:32 am
All I can say is that I am beginning to understand so much more with great insights in this blog entry and the comments. At the moment there are problems of Haiti on the news, and I have a similar view about natural disasters and very poor countries. I worry that people will merely have well-meaning pity, but they won’t see these people as having been “diasabled” by society itself.
It should be the most natural thing in the world that people function in an environment that suits them. Things that are needed, are given, not as gifts, but because (the rights of) people have value.
The same goes with establishments of learning/education. People are able to learn in the way that suits their neurological or other requirements.I have always had an intuitive feeling that there was something I was missing in relation to profoundly autistic people. I read a book by Temple Grandin, and she makes some guesses as to how she believes profoundly autisitic people think…it made me feel that we can all connect with each other if we really try to listen to each other.
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