On adjustment, dogs, and not “smiling through the pain”.

Standard

I’ve recently seen a lot of people comment on disabled people’s opinions, in the context of “adjusting” to whatever condition we’re said to have.

Basically, if a disabled person is fine with being disabled, then it’s clearly some kind of defense against having to “hope” for a cure. The idea of just being okay with the way your body functions (at least to the extent most people are) seems to be unthinkable to some people. And the idea that disabled people’s opinions come from deep emotional conflicts over the fact that our bodies work the way they do… just no.

I used to talk online with someone who had cerebral palsy. She said that every time she had a negative emotion, it was considered to be “not adjusting to her disability”. Even though she was born that way. She didn’t need to adjust, she’d always had a body that operated the way hers does.

The fact is that a lot of disabled people either actively don’t want to have bodies that function in typical ways (at least not in all respects), or else basically don’t want to be bothered.

About not wanting to be bothered:

Lots of children dream of becoming sports stars. This may lead to them getting into that sport on a child’s level, but very few take it to the point of making it their life’s goal. Often, they do not have the kind of body, or reaction time, or cognition, suited for whatever that sport is. And generally they find other things to do with their lives, enough other things that not being a baseball star doesn’t ruin their lives, and most of the time they don’t even think “Gee, I’m not built to be a baseball star.” It’s just not part of how they work, and so it’s not even an idea that crosses their mind often.

Not everyone is built to be a sports star. Most people don’t lament not being one, or they might do so a little but not a huge amount. This is because it’s considered normal not to have a body optimized for that particular thing.

The same is true for disabled people. We don’t have standard bodies (I’m including brain in body for simplicity of language here, and also because it is a body part), any more than most people have standard sports-star bodies. Most of us don’t lament that fact. Those that do (especially those who suddenly became disabled), generally get over it.

Or as one person said, whose name I wish I remembered so I could cite wherever she wrote this, “I don’t wake up in the morning and think ‘Yep, still disabled.'” (That’s either a quote or a close paraphrase, I’m not sure.)

Most people see disability as this huge, life-altering, scary, tragic, horrible, unremittingly unpleasant, thing. And so they imagine that’s how most disabled people see it.

Some of us do. But most of us — even many people with shortened lifespans — see it as an inconvenience at worst. We may or may not do things to make our bodies function in more typical manners, but most of us do not spend all our time engaging in pointless exercises in self-pity. The fact that some people expect that we do (and that all our other thoughts on disability are just a defense against feeling sorry for ourselves) says more about the people who say that (and their conception about what it’s like) than it does about us.

Dave Hingsburger once compared me to a three-legged dog. I had clearly found ways of doing what I needed to do, with the body I’ve got, rather than emulating someone with a more typical body. I was also not particularly wallowing in a huge sea of negative emotions for having the body I’ve got (why would I?). He’d seen a three-legged dog that was the same way.

In fact, three-legged dogs and cats generally do just find ways of doing what they’ve got to do with the bodies they’ve got. Not because they’re “too simple” to know better or something, nor because they’re any stronger or braver than humans are, they just for whatever reason don’t tend to automatically go in the direction of “Woe is me, I am disabled.” They seem to just figure out what needs to be changed and change it (if they weren’t born that way, in which case they just figure out what to do the same way anyone does).

I think that human beings could take a lesson from dogs and cats this way. Not like “Wow it’s so inspirational that that cat still walks around even though she’s got to use a cat-wheelchair for her back legs.” (What do they expect her to do?) Not like, “Wow that dog really overcame his disability, and we should do the same!” More like, why throw all these pointless and meddlesome ideas on top of an experience that’s close to universal when taken across an entire lifespan?

It seems though that many people view disability as necessarily something that you have to be in a constant adversarial role with. In which case you have to “adjust” to it or something. But… really, views about disability are not all tied back to some imaginary experience people would think we are having as disabled people. People seem to think they have to make a relatively simple thing more complicated than it is, adding all kinds of layers of emotion and misconceived thoughts to it.

So, no. My views about my body, such as they are, are not all “adjustments” to having it, any more than most people’s feelings about their bodies are “adjustments” to having their bodies. But it seems like in some circles you have to have a more-or-less standard body in order to be allowed the privilege of not having their thoughts and feelings (especially positive ones) about their body be considered an “adjustment” to the awful state of affairs that their bodies are presumed to be. Or as the book Pride Against Prejudice by Jenny Morris said, just because we are happy does not mean we’re “just smiling through the pain” or “just putting a good face on it”.

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

15 responses »

  1. I just finished reading a book (I’ll get the title when I get home) that talks about the amazing plasticity of the brain: how if one sense, for example, is compromised, the area of the brain that typically is used to process that sense is “co-opted” by other functions, and that’s how those other functions become more acute, such as when a blind person’s hearing and tactile sense improves.

    It’s really a fascinating book, and it’s relevant in many ways to what you posted. We adapt to whatever our circumastances may be. And we all have strengths and weaknesses.

  2. In April I had a long and quite upsetting discussion with the mother of a dyspraxic child. She was convinced that her son was ‘98% cured’ as a result of the miracle method that she had found. She was urging other parents to try it out. Along with two other adults who have specific learning difficulties, I tried to explain why I don’t feel any need for a cure for my AS or my dyspraxia. Her response was to call me bitter and crusty, and to attribute these negative features of my personality to the fact that I have ‘never known healing’. I was startled by that, as I think that my approach to my own disabilities is very matter-of-fact. I just accept them as a part of me and I wouldn’t want to be any different. But this woman just couldn’t conceive of that. Because I don’t feel the need for a cure, I must have emotional problems.

    Later on in the discussion she told me that the mothers on the board had been finding all sorts strategies to help ‘people like me’. “You could learn from us.” She kept insisting that I had no insight into my conditions. The irony of it was that the discussion board had been set up by dyspraxic adults for the parents of dyspraxic children, with the idea that the adults would advise the parents…

  3. Oh good grief yes, I’ve dealt with people like that.

    I’ve never heard “crusty”, but I’ve heard “bitter”. Here s a blog post someone wrote about encountering that stereotype on TV. But trust me, you’ve walked into a classic disability stereotype there. (Usually known as “bitter cripple”.)

    What astounds me is that many people don’t seem to realize that our entire emotional lives are not a reaction to how our body works, and that in fact little to none of our emotional lives are about that. Except for some people (usually either suddenly and newly disabled, or exposed to so many stereotypical support groups that self-pity becomes a way of life, or something like that). But even the numbers of people in those positions are blown out of proportion compared to the numbers of people not in those positions.

    The depressing thing is when disabled people themselves believe the stereotypes, about themselves or about other people.

  4. This rings so true to me. I often tell people that I feel just as sad about not being able to fly as I feel about not being able to handwrite an essay. They both seem equally fantastic to me – and neither needs much in the way of adustment. The adjustment comes in getting the rest of the world to adjust to seeing those of us with non-standard ways of doing things as OK too.

  5. “Most people see disability as this huge, life-altering, scary, tragic, horrible, unremittingly unpleasant, thing. And so they imagine that’s how most disabled people see it.”

    That is not the reaction the government of the UK has. They think people on disability benefits have it easy and are lazy scroungers who have nothing wrong with them and just want a free ride (they admit that a tiny monirity are the real disabled and we can pity them in the way you describe, but the rest need a kick up the backside). To them, adjusting to a disabillity means getting a job and not needing any help. TO go along with that, the mental health industry now promote the “recovery” movement. Once I was told a had a lifelong condition and would never be able to work. I was forcibly treated and incarcerated to ram that message home. Now times have changed and apparently if I just changed my attitude, I could “recover” and would no longer be disabled. And if I don’t change my mind by myself, my benefits will be cut and I’ll be on the streets.

  6. Yeah, the problem is that every time people with the actual condition (whatever it is) come up with a new idea (like the idea that some people can “recover”, contrary to expectations from others), then assorted people without it (and generally with far more poewr than those with it) have to take the whole thing and turn it into dogma and try to force it down everyone’s throats. And then people with it learn the dogma and often try to force it down each other’s throats, and it just gets ugly.

    I’ve encountered the same problem in the developmental disability self-advocacy movement. A lot of people there spent so long being told they could not get jobs, that the backlash has involved assuming anyone could get and keep full-time work if they only tried hard enough and/or got all the right supports. And of course government agencies are totally willing to buy (or pretend to buy) that line of crap, because it saves them money.

    I’ve had total strangers tell me I’m employable because “everyone is employable”. If I explain why I’m not, I look like I’m just arguing for my limitations, because it’s quite a litany of reasons to sit through. (“I could do ________ if I didn’t have _______, but I do, so I can’t,” several times over.) Which comes across as “negative”, but for me it’s just the reality of the situation. I can do sporadic work, that is pretty random and not to a time schedule, that’s pretty much all. Until jobs exist that are so flexible and well-paying that they adapt to the ever-shifting way my body functions (and account for long periods of time when I just can’t do them), then I can’t get one, and that’s just realism speaking. But I always get told it means “giving up on myself,” which it absolutely doesn’t. There are many things I can do, and do well, I just have to do them on a seemingly totally random schedule and basis. (This blog, for instance, I can keep up because it has no absolute and fixed topic that I absolutely must blog on, no deadlines that I absolutely must meet, and allows me to write in reaction to things in a particular and complex way that I’ve never seen a full-time or even standard part-time employer able to duplicate.)

    The idea that people with a single label or set of labels can actually differ from each other seems like something that bureaucracies just can’t fathom (or outright don’t want to fathom) a lot of the time.

  7. There are two sides to the ‘disability as tragedy’ stereotype.
    One is the scenario of a person who is ‘overcome’ by the tragedy, and needs neverending help. Such a person is usually portrayed as really unhappy, although there’s a ‘too disabled to know they’re disabled’ stereotype as well (for developmental disabilities).
    The other side of it is the person who is ‘overcoming’ their disability, fighting a brave fight to keep from being defeated by it. They ‘can do everything except’ some limited area the disability is seen to affect (eg the common deaf statement ‘I can do anything a hearing person can do except hear’).
    These people are happy, but it’s a ‘smiling through the pain’ kind of happiness, a determination that their disability won’t make them sad even though that’s the ‘natural’ result of a disability.

  8. This post really hit home with me. I’ve had a lifelong disability and it’s just boring to me. But every time I encounter a new person it’s something they experience as a surprise. I’m over it. They will never be over it.

  9. The article ‘Social security, employment and Incapacity Benefit: critical reflections on A new deal for welfare’ by Chris Grover and Linda Piggott in Disability and Society, Vol. 22, No.7, December 2007, pp.733-746 critically examines the assumptions and attitudes behind the British government’s proposals (Green Paper) on welfare reform published in January 2006. The article should be available here: http://pdfserve.informaworld.com/446611_731305600_785914695.pdf .

    The main focus of the Green Paper was on sick and disabled welfare claimants, particularly those receiving Incapacity Benefit (IB).

    The main problem perceived with IB is that it attracts too many people onto it and then traps them there once they claim it. It keeps people in poverty and more importantly from the British Labour government’s perspective, it deprives the labour market of potential workers.

    Because paid work is regarded as the only morally sustainable route out of poverty, then “the Green Paper can be read as a means of using the work ethic to blame those who lack work for the situation in which they find themselves.”

    The Green Paper suggests that the only difference IB recipients have to those officially defined as unemployed, is that they “have managed to hoodwink doctors into believing they have a condition or impairment that means they are unable to work or they connive with doctors who overstate their patients’ mental or physical problems.”

    The Green Paper is based on the medical model of disability, and not the social model, because it focuses upon the ability of IB recipients to do paid work, rather than upon the ability of employers to make accomodations for sick and disabled people.

    Over 40% of IB recipients are women. Research from 1993 found that female recipients of disability benefits are more likely than male recipients to have children(20% of female compared with 13% of male recipients). “Disabled women with dependent children [..] will not only have to deal with the sexism through which labour markets are structured but also with the disabilism of labour markets which means that disable women are, on average, paid less than their able-bodied peers and disabled males.” Also because of the social construction of motherhood in which women are always ‘there’ for their children, disabled women who (re)enter paid employment may be in “fear of not being defined as a ‘good mother'”.

    In contrast to empowering sick and disabled people to work, the policy proposals are “likely to oppress them by expecting them to be like able-bodied workers without addressing the social and institutional basis of disablement.” This is because they are based on long held myths regarding sick and disabled benefit claimants, rather than on the their lived realities.

    The article quotes a report in the New York Times (8 June 1998) that:

    “Mayor Rudolph W. Giuliani will soon begin requiring physically and mentally disabled mothers to work for their welfare checks…City officials say the old system, which allowed the disabled to stay at home until city doctors certified that they could work, denied job training, work experience and career counselling to people who desperately needed those services.

    It was also noted how a distinction would be drawn between those ‘with disabilities severe enough to qualify for Federal disability benefits’ and those entitled to state benefits, with the former exempt from the work-focused aspects of the new regime.”

  10. This is very true for people with Hyperacusis. They are told that they are burdening others with their disability, when all they ask for is if a family with loud kids could sit a few seats back from them.

    People don’t seem to understand that Hyperacusis isn’t just being irritated by loud sounds, it’s being caused real pain by them. It’s not a choice, it’s a real condition that cannot be changed.

    It would be nice if I could just go to a resturant and eat without having to be constantly scanning for the next family with kids who are coming in, to make sure with a glare they know to sit elsewhere.

  11. Being disabled doesn’t stop a person being a sports star, as the paralympics show. I don’t know if there is wheelchair baseball, but there is wheelchair basketball.

    There are autistic people who believe that if they were ‘normal’ they would have the romantic or sexual relationships they crave.

    There are people with mental illnesses such as bipolar disorder and schizophrenia who long to be cured, and lead a ‘normal’ life.

  12. I was referring to non-disabled people who don’t have the physique to specifically become sports stars (which is most). I was then drawing an analogy between that, and there being specific tasks that disabled people (of any particular kind) can’t do either.

    And, actually, there are many disabled people who can’t do sports, even within the paralympics etc., or can’t do them often enough to become sports stars.

    But disabled people’s sports skills wasn’t what I was talking about, nor was I saying nobody wants to be cured of anything. I was saying that it’s really weird when society automatically views some limitations in human bodies (those considered disabilities) as ‘to be adjusted to’ and that ‘adjustment’ as the main determining factor in the person’s emotional life, but does not view people with more ‘acceptable’ limitations (such as not having the body of a sports star, or the mind of an astrophysicist, or something else that requires what’s normally considered to be exceptional ability in a particular area) in that manner nearly so often (not that there are not pressures, but the pressures are different).

  13. There’s also the point that if I (closest example ;-)) wasn’t on the Spectrum, I simply wouldn’t be the same person…. but of course, the sort of person who reflexively wants to “cure” me can’t be bothered with actually thinking about me as an individual….

  14. My friend has a three legged dog and she is so well-adapted that she can dig huge holes under the fence with just her front leg. This may not seem like a huge accomplishment but I was impressed! I know I couldn’t dig a hole like that with just one arm. ;)

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