In a casual chat with a stranger I was asked what I do for a living?
I think the expectation was that I would say: Not so very much.
But I answered describing a bit about each of my two jobs, the one where I work in an office, the other where I travel around giving lectures and doing consultations.
It's always a bit funny to watch features change as faces rearrange themselves from on emotion to another. When I'd done, and I really only took a couple minutes. I was told that I should be proud of myself because I'd done well in spite of my disability.
Let me pause to say, I hate that sentiment.
People with disabilities may be the only minority group that gets openly told that any achievement is made enormous because we have to do things in spite of who we are.
I don't recall ever hearing a woman, successful in business, being told that she is to be proud of herself for being successful in spite of being a woman.
Or a gay man being told that he should be proud of achievements made in spite of being gay.
Never.
It would be considered offensive.
I do believe there is an 'in spite of' to be used - in all cases.
In spite of prejudice.
In spite of barriers.
In spite of attitudes.
In spite of these things, people achieve anyway. The way is made hard, not by 'being' but by 'bigotry.' I find 'inspirational' stories of people with disabilities frustrating because they make the 'disability' the thing that is 'triumphed' over. It's almost never that. It's the idea that we 'can't,' it's the prejudice that makes sure we 'can't' ... people with disabilities triumph over the preconceptions that disability means inability ... people with disabilities inspire the very people who make disability difficult and instead of recognizing that the prejudice is wrong, that the idea of disability as a negative force in someone's life is simply projection, they become 'inspired' the the 'exceptionality of the person seen as exceptional.'
What's worse is the number of people with disabilities themselves who've bought into this.
I mourn a bit every time someone with a disability, in inspirations spotlight, says, 'I don't let my disability stop me.'
Let's be clear, someone with a disability who climbs Mount Everest didn't triumph over their disability - obviously climbing Mount Everest is something they could do, they triumphed over the idea that they couldn't in the first place, they triumphed over the expectation of failure, they triumphed over the millions of messages they got about their personal inadequacy by professionals and by passersby.
Let's be clear, someone with a disability who gets a job didn't triumph over their disability - obviously they can do the job, they triumphed over the myriad barriers placed in the way of employment, the curbed entrances and the staired attitudes, over the prejudices of interviewers and the concerns about the cost of accommodations by accountants.
So, in spite of my disability I continue to live a life of employment and relationship - that's what they see. What I see, from where I sit, is something different. Much different.
But back to my conversation with a stranger.
I smiled and said, 'thank you, but disability isn't the barrier, is it?'
He said, 'I don't understand.'
In spite of myself, I wasn't surprised.
17 comments:
In spite of my brown hair, I have become a father of an incredible two year old kid. Sounds absurd and disconnected!
...but.... it is exactly the "sentiment" that you are discussing (albeit a bit less full of hidden bigotry). I think it would be an interesting exercise to make an "in- spite-of" list to illustrate the bigotry and disconnection pointed out here. With this blogging community I bet we would get some good ones....then, those could be used in response to statements like you got...
here are a few off the top of my head:
"In spite of stubbing my toe I still read the NY Times this morning."
"In spite of being a man, I went to the bathroom and put the seat down when I was finished"
"In spite of the sun shining, I ate Cheerios with raisins this morning"...
I have mixed feelings about this. On the one hand, I agree that attitudes are much more of a barrier than disability.
On the other hand, I would still be incapable of work, even if every heart and mind were ramped. I think of myself as "disabled", but perhaps I should identify as "disabled and ill" to differentiate between my situation (bedridden with ME/CFS) and the situation of someone who is disabled but active.
(I managed to type this blog comment despite being overweight!)
Dear Dave:
Too true, Dave, too true! My brother's horrible life did not come from his Down Syndrome, it came from other people's attitudes.
In spite of my tea drinking behaviour I managed to read and respond to this blog.
Colleen
Surely it depends a lot on the nature of the disability, and the way it's experienced by the person who has it? My foster son has extremely limited control of his body. He can move his left arm, a bit, his head, a bit, and nothing else. His disability in and of itself gets in the way of him doing things - and commenting on something he's done acknowledges the huge effort involved in doing the thing. In his situation his disability is a barrier, even if the other barriers weren't there - which of course they are, anyway.
Louise,
But it's not simply a question of the nature of the disability. It's also a question of exactly WHAT the person is trying to do.
If a person has your son's particular mobility limitations and, let's say, learns to grasp a baseball bat and manages to hit a single (something I've never done myself despite not really having a mobility impairment per se). Then I can see that as doing something that the disability genuinely gets in the way of.
But these kind of situations are not as common as some people seem to think. So very very often, people will praise people with disabilities for accomplishing things that really have absolutely zero relevance to their disability. They only THINK the disability matters even when there isn't any evidence logic to suggest that it should. And THAT'S what Dave is complaining about here.
There's no reason why a person who rolls instead of walks shouldn't be able to give speeches as long as he has the skills for that (which Dave does). As a deaf person, I have had people be astonished that I could achieve certain things that deafness doesn't actually even impede with in any way. For example, some people seem surprised that I used to be a junior speech writer, as inability to hear should somehow be a barrier to that. But really, speech writing is not that different from other kinds of writing such as journalism or blogging. Anyone who is a strongly talented with one could probably learn to do the other two with a little exposure and experience. Yes, there are a few differences to keep in mind when speech writing, but nothing dramatic. And all of these minor differences is stuff that a deaf person can learn without difficulty, as I did (from a hearing speech writer with more speech writing experience). For example I learned to ensure that every sentence I wrote for a speech was no more than 30 words since it's harder to parse long, complicated sentences through listening than writing. I can't "listen" for the right sentence length like my boss did, but once I understood the need for brevity, I started paying attention whenever my boss pointed out sentences I wrote that were too long and counted their length. And did this until I realized she always started complaining when sentences ran over 30 words but never said anything about sentences (even if visually seeming as long or longer) with 30 words or fewer. I doubt she even realized where the boundary was herself or that there was a simple number attached to it. I only picked up on it because Word has this handy word count feature :-) Once I figured that out and checked myself to keep all my sentences below 30 words, all her notes about excessive sentence length vanished. I didn't need to hear to work that out. Deafness never came into the equation. Most things can be accomplished by more than one method.
I wrote this comment despite the fact that I have freckles.
Andrea S.
"His disability in and of itself gets in the way of him doing things - and commenting on something he's done acknowledges the huge effort involved in doing the thing."
The thing is to take a look at whether the act actually took a lot of effort for them.
In some cases it's something that would be remarkable for anyone to do (eg climbing Mount Everest). In those cases, why put so much emphasis on disability? Anyone would find that hard, disability or not.
In other cases it was made hard specifically due to disability. These you have to be careful about, because it's easy to overestimate the difficulty that disability causes. I have a friend with CP and sometimes when she's typing on a desktop computer, she's reaching at what looks like an incredibly awkward angle and typing very slowly - but she doesn't find this takes very much effort, even though it looks effortful. On the other hand, I'm mostly normal looking, but due to my motor coordination issues, anytime I actually catch something thrown at me is pretty amazing.
I think both of the points Ettina makes here are excellent.
Way back in middle school, a teacher gave me a class award that was basically for writing while deaf. I tried to express my discomfort with this and she said that my writing skills were superb by any measure for any writer deaf or hearing. But she somehow thought that my deafness meant I deserved "extra" recognition for "overcoming" my disability as well. Okay, it is true that many deaf people tend to score low in reading skills for a range of reasons I won't go into here. But that isn't universally true. And even if it were ... if my writing is great enough to deserve recognition, why not just recognize it as being great? Without bringing my deafness into it since it isn't really as relevant as that teacher seemed to think.
The teacher was trying to make me feel good about myself but ended up undermining my self confidence instead because it made me wonder if I was always going to be judged as "good despite being deaf" instead of just plain good.
I also agree that it is worth being careful about assuming something necessarily takes a lot of effort just because it LOOKS like a lot of effort. Don't conflate "different" with "difficult".
Amen Dave I own a business and I have a side job and people always seem so taken aback. It ticks me off. It's the same reason I hate the phrase "physically challenged" Because in my view my life getting up everyday and working and living life is not a challenge, climbing a mountain or running a marathon is. But it would be for most people no? It ranks right up there if I had to go through what you do I think I'd rather be dead or never get up in the am ...
lovely sentiment. But I do love your response and may use it if you don't mind :D
To the person who's son is limited because of his disability in what he can move and do.
I wonder though how he feels or wil feel you don't say how old he is. If that's what he has to work with it's probably normal to him and therefore no great accomplishment in his own mind because that's what he has to use make sense? Not that someone comment on his accomplishments is BAD it's the connotations that come with the "Oh that's so wonderful comments" He should be celebrated for what he's done as a person not because he's done it with a disability. I'm explaining this badly and I mean no disrespect to you or to him. It's that there is more about him, I hope people will recognize, then just how limited or not he is by it? Make sense?
Laura
Have you ever done a blog on how demeaning the word 'cute' is to some people who have a DD?
My daughter has DS and no matter how hard she works, or what she accomplishes, all she ever hears is "Oh, she's SO CUTE' or 'That's so cute'!!! It just drives me over the top.
Please don't dismiss other bigotry with the "my bigotry is worse" thing. Women in technical fields are frequently told that they've done well "despite being a woman." Sometimes it's not quite that literal, although it often is.
I'm a disabled, fat female who lives in the technical world. I regularly get dismissed for any of those, if not all. I've had men start to talk to me, take one look, and go talk to a male near me instead, whether that male has the appropriate knowledge.
I help run a fairly large technically-oriented conference. Male speakers are lauded for their knowledge and sometimes their wisdom. Reactions to women range from "Wow, she's hot!" (once said by 1/3 of the men attending a talk by a 16 yr old young woman, amongst many other examples) to rants about how she is clearly stupid and incompetent (about women with years more experience - and knowledge - than the ranter).
One of our more popular speakers is deaf. She's a leader in her field and an amazing speaker, yet every year we have her speak, some small number of jerks not only complain that "she talks funny" but that "she's obviously clueless, why not get a man to speak about this?"
Women who rise to any position or power are still assumed to have gotten there because of looks or sex. "Wow, she's a boss, and she's a WOMAN?" is still a common thing. It's tiresome.
Just because you haven't heard it doesn't mean it's not happening. It does. Frequently. It's not worse than the treatment of disabled people, nor better. It just is. It's not a race, it's not a war, it's not a competition.
Let's get rid of all bigotry.
You're right Moose, I could have written that part better.
Just a quick response to those who commented on my post. I'm not making assumptions about what my foster son finds difficult but does anyway, it's how he reports on his experience. It's things like feeding himself, holding his head up long enough to see something, making the effort to speak rather than withdrawing from the situation. Not cute. Not 'you're so wonderful' - more, 'I really rate you for the effort you put into getting through the day'.
However, to reassure Laura, and thank you for your respect - there's no way that he is defined by his limitations. He has a far nicer personality than I will ever have, a sense of humour that has people rolling in the aisles. He is absolutely brilliant in the 'being' department, it's the 'doing' department he can't manage so much in. And I'd rather be better at 'being' than 'doing' any day. He's in his early 40's and has friends all over the world.
I am disabled because of an accident. I do not wear my disability like a badge of honor. I mourn the loss of ability and the enjoyment of most of my interests. Yes - I do find things to be thankful for. One is when people encourage me - often by saying something like "Considering all you have against you, I am amazed you do what you do (or get done). I feel better for it - like the effort it take just to accomplish something in a day that most folks could do before breakfast. For me - bring on the encouragment. I am what I am - unable to do.
For others, I can understand that their disability may not have destroyed their lives, and they were able to continue on by varying their habits (ex:chair vs. walking) not so for me. My disability is a barrier - not from life, but from the quality of life.
I don't understand what people even mean when they talk about overcoming or triumphing over a disability. To my ear, it makes disability sound like a slain dragon, which it will never be. No matter what I accomplish in life, my disability will always be there, as strong as ever. My disability's progressive, so even though I plan to keep living and being and doing greater things than before, my disability's going to be getting stronger the whole time. There's no "overcoming" that reality; it just is.
I'm not necessarily as bothered by "in spite of," though I'd use it with caution. I appreciate the occasional recognition for what I do as a public school teacher, because it's hard work and it's important work--that's true for all teachers. But I can also give you a list a mile long of reasons that it's even harder to teach with a disability, so I don't mind when someone recognizes that I'm doing good work "in spite of" it. I'm not overcoming, conquering, or triumphing over my disability--the disability still plays as large a role in my life as ever--but I'm working with it.
In fact, as a teacher, I actually appreciate it when my students notice how much I do, in spite of disability. I teach ESL, and my kids face all kinds of cultural, racial, linguistic, and economic barriers, just to name a few. Most of their teachers, in their eyes, grew up in privileged worlds that don't relate to their own, so of course they went to college and have jobs as professionals. The kids don't see how that in any way relates to their own lives and potential. But they see me differently. They see me working hard and living an independent, professional lifestyle, in spite of all the hard stuff life throws at me. In spite of prejudice, in spite of barriers, in spite of attitudes, yes, and in spite of my body's own weakness. I've even come to adopt a different style of handling disability in my classroom. Life has always trained me to try and hide my struggles, because that means weakness and vulnerability, and that's bad. But with my students, I've become more open about sharing the full disability experience--the good, bad, and ugly. I want them to see when I'm struggling, and how it can hurt, and it can be hard, and how I adapt, and how it makes me stronger and happier. When they see all that, and when they feel like they can reach their own goals "in spite of" everything life's thrown in their way, then I consider that a huge victory.
Of course, in those moments, I don't feel like I'm a good teacher "in spite of" disability. Rather, I feel like a better teacher "because of" disability. :)
To Louise and her son
I aspire to one day be great in the being dept. Cause I to lack a little at least in my own mind in the doing part of life.
I don't struggle with the same things your son on a daily basis but I do understand the need to withdraw from social things when making the effort if fit in is on some days more then I can deal with.
I so hear that one :)
Kristine
I get what you are saying in a way.
I think the problem is when people just assume something is hard....
I've had so many people tell me something was hard for me when it was something I do without thinking twice about.
I do have a question though, you say it's harder to teach with a disability - harder than what? Just because others don't have an outward disability doesn't mean they don't struggle mightily with whatever....
Just a question.
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