Este Yarmosh has Cerebral Palsy. She holds a B.A. in English from Eastern Connecticut State University and is currently studying for her Master of Arts degree in English at Simmons College.
I have what is, I believe, widely considered a “visible disability”: Cerebral Palsy. Yet it is of so slight a degree that most (able-bodied) people probably don’t notice it. So, this slightness in a way makes my Cerebral Palsy an invisible disability (which it really isn’t—I do not mean to offend those with invisible disabilities). The tension between the visible/invisible aspects of my disability causes me to reside in a sort of twilight world which constantly shifts between my ability to “pass” as “normal” and the very real experience of my disability. Granted, I walk with a limp and my left hand curves to the left because of my tight muscles, so my “passing” is really an illusion.
For instance, when my able-bodied step-father talks to me sometimes, he implies that he subscribes to such stereotypes as “overcoming your disability” – which is damaging because I can only adapt to my environment and circumstances, since my disability will be with me for the rest of my life. I say this last part without self-pity, which, it is said, is the refuge of the weak. Then I suppose I have a right to it; I say that sarcastically. There is a reason why my step-father would be so clueless in his dealings with me: he raised two boys, both of whom are able-bodied (let us be thankful for that! Ugh).
When I talk to my step-father about how my disability impacts my life, occasionally he will say that I’m using my CP as “a crutch.” A “crutch”? That is outrageous; I was upset by his comment, though I didn’t tell him so. He has tried to convince me to feel guilty about “using my Cerebral Palsy as a crutch.” I simply reject the invitation to feel guilty about an impairment that I was born with. I am just not equipped to see with able-bodied eyes, so to speak. I have known nothing else but my disability; I am stating a fact here. What my step-father is implying by saying that my disability is a “crutch” is that I am too dependent on my impairment and that I complain too much about it. Now, I don’t think about my CP every minute of every day and it’s not too big a problem for me much of the time. However, my CP is also real and is a legitimate issue for me. To say that it’s not would be lying to myself and to other people. And I think I have a right to complain every once in a while about certain things related to my disability, whether they are physical or social aspects. For example, sometimes it is very difficult for me to walk after I’ve been sitting for a period of time because my muscles have minds their own and thus stiffen up, as my Cerebral Palsy is of the spastic type. I think I should have the option of complaining about the fact that I can’t walk! I have cited the above personal example to illustrate how ignorant and clueless most able-bodied people truly are when it comes to dealing with people with disabilities, even if they think they mean well by saying the things they do.
I would like to compare the scenario of telling (or implying) a person with a disability that they’re not disabled with an incident from the life of Frantz Fanon, the great Marxist literary critic. To paraphrase, he was giving a lecture in France and a Frenchman, who was impressed, said, “at bottom, you are a white man” (Lodge 137).
Now, Fanon was of Afro-Caribbean descent. The Frenchman was changing, and thus, denying Fanon’s nature with his comment, whether he knew it consciously or not. Fanon’s incident illuminates white people’s ignorance not only of Afro-Caribbean culture and humanity, but it shows how people in general are ignorant of other people’s feelings as well. The Frenchman’s comment was really a back-handed compliment, which is ultimately insulting and hurtful. Once again, the Frenchman’s remark to Fanon is analogous to someone saying to a person who has a disability, “you’re not really disabled because you don’t look like it and because you are very skilled at what you do.” This denies the person with a disability’s basic nature and humanity, while the ignorant person who makes the comment thinks he/she is complimenting them and telling them what they want to hear (not always the case).
I feel like able-bodied people do not take me seriously when I tell them I have a disability – it is at the point where it seems like they don’t believe me. There may be some evidence for this, though, since I use inserts now as opposed to a higher-than-my-shoe brace I wore as a child. Because to prove to the able-bodied that you are disabled you need concrete evidence of it, which has to be seen! Again, I say that sarcastically. I feel like I’m lying to able-bodied people; this is ironic, since of course I have Cerebral Palsy. Here is an example of an able-bodied person not taking my disability seriously: back when I was in college, my roommate and I had an argument and I tried to level with her by telling her something personal about me. I showed her my leg brace which I used to wear when I was younger. She looked at it briefly and said, “Oh, I hurt my knee too,” and she walked away. The point is she completely misunderstood my situation, taking it (relatively) lightly and believing that I had an injury, the implication being it would heal in a matter of weeks. The truth is, on the other hand, I have an impairment which is life-long and which often gives me searing pain (I’m not pretending that, able-bodied people!).
It feels, for me at least, easier to “pass” on a daily basis. How dare women with disabilities offend the delicate sensibilities of able-bodied people by reminding them that not merely do we exist but that we have our own types of power and strength! Yet there are times when I sort of feel guilty “passing”, as though I’m denying a critical part of myself by keeping up this practice. Yet, it is my opinion that there is a barrier of silence separating me from the able-bodied people I attempt to notify of my disability. The barrier is built by them. We know that; it is nothing new. Yet that is why the social model of disability must continue to be written on and discussed, since it impacts our lives in such a major way. We can keep using the social model as a tool to scrutinize and critique the manner in which the able-bodied interact with us.
Source:
Lodge, David and Wood, Nigel. Modern Criticism and Theory: A Reader. Pearson Longman, New York: 2008. 846 pp.
Great post.
Using the word “crutch” as a perjorative is really ableist. Crutches are useful tools for getting around, not bad things that impair people. Which makes calling your CP a “crutch” even more ridiculous when I think about it like that.
.-= Sasha_feather´s last blog ..More words from Ursula K. Le Guin, on this the day of her birth =-.
Thank you for pointing that out — about the double meaning of the word “crutch” — I hadn’t even considered that when I wrote my article.
The consistent denial of identity to people with disabilities is really frustrating. I can’t imagine what it would be like to straddle the divide between invisible/visible; as someone who can and often does “pass,” I can say that it’s really frustrating to ask for accommodation and have it ignored/written off because I don’t “look disabled” or fit within someone’s framework of what disability means. This is indeed a key issue with our current model of disability.
.-= meloukhia´s last blog ..In the Streets =-.
This is an awesome post, Este! I have pretty mild CP myself (left hemiplegia) and have a slight limp because of it. Usually, the responses I get when I tell people this fall into one of two categories: 1) “But…people with CP are usually in wheelchairs, right?” or 2) “Oh, that’s why you have a limp!” Yeah.
That anecdote about Fanon is pretty amazing, in a nauseating sort of way.
Awesome post, Este! And I’m totally not just saying that because I have a left hemiparesis
In particular, this sentence rocks:
.-= Tera´s last blog ..Rosemary =-.
I identify with this, and the problem upsets me on a number of levels.
First, I dislike that the onus is always on me to prove that my condition is real. Maybe because pain, though not necessarily chronic pain, is something all people experience, but when talking about situations, it’s always my job to characterize the pain in a way that distinguishes it from something where “take a couple of ibuprofen” is not a ludicrous answer. If I don’t describe it vividly enough, I get some version of a “suck it up and deal” (though perhaps kindly worded and kindly meant “suck it up and deal”) response. If I do describe vividly, I’m often told I’m overreacting or being melodramatic.
Second, it is apparently never enough simply to describe pain, to talk about how it feels or even to list activities I can and cannot do because of it. (If one more person tells me orgasm will relieve my pelvic pain, I will… do something drastic. I don’t remember the last time I could even get to orgasm on a bad pain day.) It’s only when I describe an active, visible, and involuntary event — namely, that sometimes the pain causes me to vomit and/or dry heave repeatedly — that some people begin to react like maybe they don’t quite have a schema for processing this sort of thing.
And the vomit, really? Not the worst facet of the pain; neither is the passing out. But I don’t know: a) how to make people understand that the worst part of the pain, for me, is the pain; b) why that’s my job in the first place.
.-= Tori´s last blog ..And I Didn’t Even Mention Viagra =-.
I loved your post, Este! I have Cerebral Palsy (cp) too. It is mild – affecting my left side and I walk with a slight limp. I had a lot of heel cord extension surgeries when I was a child and my cerebral palsy back then was clearly visible to others. But after my surgeries – it was easier to (like you described in your post) “pass as normal” and my disability now is more or less invisible to others. It makes it extra challenging for me to advocate for my needs because my disability is not readily seen by others (part of me – I think it’s the little girl inside- is still ashamed that I have cp and would do anything to hide it ). My family members are also dismissive of my cerebral palsy at times – I remember my parents saying to me as a child when I would get angry or frustrated about my cerebral palsy that I should just “not talk about it, because there is nothing wrong with you” My parents also discouraged me from telling my teachers that I had cp because they didn’t want me to be treated “differently”. Similar to what you said about your parents and using cp as a “crutch”. In hindsight, I’m not sure my parents handled my disability very well. I think it would have been better for me to talk about my cp openly -revealing my full range of feelings about it, but I’m learning to do that now as an adult.
@ Feminist Scribbler:
I appreciated your post about your CP. It sounds quite similar to mine. I, too, had a couple of surgeries when I was younger which improved my walking (my limp had been more noticeable beforehand). However, I was told many years later by my doctor that the doctors had overcompensated and was told that “one of my tendons snapped” and is now floating somewhere near my kneecap–kind of nasty to think about, I guess. My parents have been a bit too over-protective of me — I’ve read a lot of literature about disability (past and present) which says this is quite common for women with disabilities.
Small world– I’m in your Feminist Film class. Glad to see you’ve found this blog. It’s quickly becoming a must-read for me.
Since you express some discomfort with “‘invisible’ disability” as a term, I thought I’d suggest “unseen disability.” As Amanda points out here, many disabilities are perfectly visible if you know enough to look for them. Something like “unseen” puts the not-seeing on the observer, not on you or your disability. It’s for that same reason that I like talking about getting “read,” rather than as passing or not passing. “Passing” implies to me that I am doing something to cover things up, while “read/ing” says to me that others aren’t noticing the cues I’m sending out.
Thank you for writing this! I feel so relieved. I have experienced the exact same thing many times: people telling me that my CP was a ‘semi-handicap’, or that I wasn’t disabled. My response to that was: “Well, part of my brain *is* dead, how is that not disabled?” The response was: “But you can do stuff. Normal stuff.” Sad to see people equating ‘disabled’ with ‘incapable’, isn’t it, even when it is a bodily impairment we are talking about, not a way people manage their day to day business…
I also strongly identify with your guilt about passing for able bodied. How cruel, it seems, I sometimes think, to be able to influence the visibility of my impairment, when other people who are just as worthy as I have to bear the brunt of prejudice all the time. I have also been accused of being an impostor by people with other disabilities that are always seen. How *dare* I sympathise with their plight, if I only have to bear so little of their burden? How dare I claim a status *they* rightfully own by being more-disabled-than-thou? How *dare* I get help, when there is too little to go around for them, who *really* need it?
But existing in a twilight zone, as you put it, brings with it its own problems: help denied or given too late, because I looked able bodied in other situations. Having to defend myself against people with *and* without disabilities can make me feel utterly alone. How much help can I claim? If I am almost able bodied one day, and enjoying the benefits of that, does that mean complaining about my problems when I do experience them is somehow inappropriate? (But then, should able bodied people be prevented from complaining about a sprained ankle because it wasn’t sprained the day before?) And all the hurtful comments: ‘You said you could do this, and now you can’t! You’ve lied!’ ‘You said you couldn’t do this, and now you can! You lazy liar!’ ‘If I had as easy a time being ‘disabled’ as you, passing for able-bodied weakling, I’d be thankful, so shut up!’ ‘Are you drunk?’ ‘Geez, you’re clumsy!’ ‘You should get that fixed, you know.’ ‘Whaddaya mean, you’re tired? Party pooper!’ ‘Yeah, he really liked you, but he didn’t see you limped before- sorry.’
Discrimination against unseen disability is a problem too, and it does impair quality of life, so I’ve come to the conclusion I’ve earned all the help I get. Emotional damages.