"I'm not disabled, I can do ___________ just fine"

[marydell]

I'm curious to know how folks on my flist feel about the term "disabled," particularly people who are technically "disabled." 

There's this internet storm underway because the BBC has a host for a children's show who has only one hand.  Google "bbc arm children" and you'll find half a million articles.  Anyway, one of the things that I'm seeing from people, particularly people who are close to someone who has a limb deficiency, is this: "he/she isn't disabled!  he/she can do anything anyone else can do!!! just you watch!!!" 

I have an assortment of people in my family who have disabilities, including my sister (right-side hemiplegia), my mother (assorted geriatric mobility problems), my mother-in-law (severe arthritis),  my husband's cousin-in-law (upper limb deficiency), and my son (upper limb deficiency).  This isn't counting my friends, or people I work with, or people with psychological disabilities, etc etc--(all of whom do count, I'm just not listing).  Anyway, from my perspective, a lot of people have disabilities.

It seems to me that if I tell Charlie "you're not disabled," or "that's not a disability" when he has only half as many hands (and elbows*) as other people, that's 1. stigmatizing "disability" and 2. minimizing any difficulty he has going through life in a world designed for the two-handed.  I don't think it's a tragedy or a big hairy deal that he has a limb deficiency.  I also think it's ok if he has days where he is not an inspiration to all, or fails at some stuff because it's too hard to do without that extra hand or elbow.  Like, he really enjoys music, so we're going to have him take music lessons, but we'll try to steer him toward an instrument that he can play WELL without a second hand.  The whole thing of "there's a lot of piano music written for just one hand!" is great, but it doesn't help you to play the Moonlight Sonata.  I'd rather have him be the kid who plays the trumpet well, full stop, than the kid who amazingly plays piano with only one hand isn't that amazing?  That's me, though; his mileage may vary and I will follow his lead.  Mainly I'm going to try to open as many doors as I can, and let him decide which ones to go through.

Anyway my take is "it's a disability; lots of people have disabilities.  It doesn't have to stop you from having a good time or doing the things that matter to you.  But sometimes it's probably going to be a pain in the ass."   And "yeah, you're disabled, and there's nothing wrong with that."

What do you think?

*a whole lot of folks who only have one hand and do stuff like play major-league baseball have two elbows, which makes everything more manageable.  With an elbow, you can move something toward yourself or cradle something in the crook of your arm, and your prosthetic options are better.  Not that "oh it's horribly sad that Charlie lacks an elbow," just that "no hand and also no elbow" is more challenging that "no hand." 

Comments

[browngirl.livejournal.com]

[short response written around interruptions and not polished]

I'm with you. It seems to me that 'disabled' is suffering some of the same negative connotations creep that led to the whole progression of non-offensive terms for people of my ethnicity. I think it makes sense to resist that process, and that you have a sensible take on things. Charlie shouldn't be required to be an Inspiration; he should get to be a boy. I'm glad he has a mom who's thinking about how to ensure that. :)

[kalmn.livejournal.com]

me and my occasionally pain in the ass disability are with you on this one.

[kyuuketsukirui.livejournal.com]

IME That attitude ("zomg don't say the word disabled!") tends to come more from well-meaning but overreacting able-bodied people, much like whites who are so afraid to say the word black that they call blacks from England African-Americans, or NTs who say "people with autism" rather than "autistic people".

The disability rights movement is called the disability rights movement, not the "differently abled" rights movement or whatever other circumspect term able-bodied people think should be used.

[rikibeth.livejournal.com]

I think it's a sensible attitude. I also think that, given some people's all-or-nothing response to the term "disabled," which doesn't encompass the notion of degrees of disability, the term "challenged" also makes a lot of sense -- because, hell yeah, coping with certain tasks with only one hand is a challenge, and if you also lack the elbow, that makes it even more challenging.

Also, ISTM that "has a disability" sounds more flexible and adaptable than "is disabled." The nuance seems to convey more of the "some things are a pain in the ass" than "entirely unable to do foo."

[gailmom.livejournal.com]

In the end, of course, as with other "loaded terms" it is up to the one wearing the label to choose what label to slap on themselves. I usually say that I'm disabled. (fairly advanced fibro and blah blah bipolar blah blah--I won't hit you with the full diagnosis, just trust me when I say it sounds impressive and scares most people). I used to say I "suffered from" but frankly, both illnesses have a serious negative impact on my daily life and functioning. At this point, yeah, I'm fucking disabled.

Which is not to say I denigrate those who choose not to label that way. Back when my bipolar was only my problem (not partners or kids) and the fibro wasn't as far along, I never labeled myself that way. Partly because of other people's reactions, partly because it felt like a cry for attention "look at me, I'm disabled, be impressed with everything I manage to do! wee!!". I would admit on medical forms that I was "diagnosed bipolar" but leave it at that, and never mention it on job applications. Now, it's a different story. I can't maintain my home on my own, I can't hold down a job, I don't even manage to raise my kids without a dedicated network of extended family. That's disabled, imo.

I think attaching a stigma to disabilities, be they physical or psychological, is stupid. I also think it will continue to happen. Hell, on bad fibro days I've had people fuss at me for using a wheelchair when "there is clearly nothing wrong" with me. All we can do is remember to breathe deep, and then open our mouths and calmly educate the hell out of your now fairly captive (by their own choice) audience. If one keeps it civil and calm, a few people will even listen.

Frankly, compared to "doing stuff", dealing with other people may be one of the hardest parts of any disability.

[mrissa.livejournal.com]

I think that we have different words for "disability" and "inability" for a reason.

[aitchellsee.livejournal.com]

Every time I've read one of your posts discussing your attitude toward Charlie's limb deficiency, I have two very strong reactions:

- Yes! Go, MaryDell! and

- Charlie is one lucky little boy to have such together parents, who respect his individuality and unique needs (not just the arm-thing either) and work to enhance and support his Charlieness rather than plotting how to compress him into their pre-cast mold for the "ideal child".

I'd think the approach you've outlined here would give him the tools to cope not only with his absent limb, but also with so many of the other challenges that confront us all as we try to grow up and become more fully ourselves.

[aitchellsee.livejournal.com]

Also, on the topic of limb-deficient British mums and role models, I want to give a shout-out to the mother of one of my second-grade classmates, fifty years ago.

There was a little girl in my class whom I really liked, but hadn't really gotten to know well before my family moved away to a different school district and we lost track of each other. But before that, I'd been able to go over to her house to play a couple of times, and my mother would visit with hers while we played together.

And Jane's mom was such a nice lady, and so welcoming, and capable,and she was the first Englishwoman I think I'd ever met (I wouldn't be surprised if she was a war bride, come to think of it now) with her nice English accent.

And she had one arm that ended just /b/e/f/o/r/e/above the elbow and you could see it there, in her short-sleeved dress, just like anyone else's arm. And she explained that she'd been born with only half an arm, and she was so straightforward and matter-of-fact about it that it became perfectly ordinary and not at all scary. And I suspect she helped to inform my attitude towards other people with handicaps. So Thank You, Jane's Mom.

---

Hmmm. And suddenly I remember an even earlier encounter with a person with upper-limb-deficiencies, my very first, before I was five years old. We were visiting my Uncle Cyrus in Baltimore, and I was outside playing with his granddaughters, one of whom was only one day younger than me. And one of their friends on the block was a little girl with no arms at all, just little stubs at the shoulders (we were all running around in our little sunsuits). And it was amazing what she could do with her toes! And everyone was very matter-of-fact about it.

I remember Jane's Mom every now and then, but I hadn't thought of the little Baltimore girl for years. I hope they've had good lives this past half century. And I wish Charlie well for the next half century (and more)!!

[edited to better describe Jane's Mom's Arm]

[mmerriam.livejournal.com]

Dear World,

I'm not "differently-abled" because I'm "visually impaired."

Those are mealy-mouthed terms designed by someone, (or groups of someones) who are probably able-bodied and probably have a misguided notion that somehow using those terms is more "positive" and maybe even "uplifting" than the simple word disabled, which has somehow developed a negative connotation, has seemingly come to mean "can't" or "unable" to some people.

Here's the deal, World: I'm blind. It's a disability. It puts me at a disadvantage in certain situations. There are things I can't do as well as someone with full sight, there are things I can't do at all. That's the reality.

And don't give me any "Well, if I take my glasses off, I only see 20/200" bull. That doesn't mean you understand the day-to-day difficulties I and others with the same disability (blindness) face. It just means you took your glasses off.

Don't try to tell me I'm not "really" blind because I still have some useful forward vision during daylight hours. People have, and I always have to resist the urge to put my stick on them and run'em into the boards.

There is nothing intrinsically negative about being disabled. I just am. So are plenty of other people. We do just fine, we just sometimes have to work a little harder at it.

And yes, there are things I can't do, and I'm sorry, World, if that somehow offends your sunshine and butterflies notion of "Anyone can be anything they want, if they just work hard enough!"

Nope, never going to be a fighter pilot. Never gonna be a race car driver, never going to do a job that requires peering through micro or telescopes.

I am disabled. And that's okay. It's cool. I got dealt the blindness card, and it sucks, but I can deal. But World, I need you to see me for what I am, not what you wish, or what makes you feel better. Because my disability is not about you.

[etumukutenyak.livejournal.com]

I have a disability myself -- I'm hard of hearing. I'm not bad enough to be capital-d Deaf, so I'm just another one of the HOH crowd, although I'm not LD (late-deafened) but HOH from birth.

Yeah, I'm disabled, but I'm not unable. I can't use my ears as well as others do, but I get by. Children will ask me about my hearing aids, and I just explain that these help me hear just like glasses help me see. That's all they need, and away they go.

I have called it "volume control" to LD folks, who find it more appealing that way. I do, yanno. Thunderstorms? Sleep right through them. Phone ringing? Leave a message on the machine, unless I have my aids in and turned on. Dog barking, cat meowing? Too bad, until they get closer. Son arguing or complaining about his chores? CAN'T HEAR YOU, SONNY! Ahem.

Oh, sure, there are the disadvantages. Um. Let's see. Oh, well, I can't hear the other end of the table so well, and big meetings get difficult to follow..the worst is not hearing people from behind, so they think I'm deliberately ignoring them. That really annoys me, because if they just came a little closer, I'd hear them and answer. That's partly personality, and partly my disability. Phones have gotten easier to use over the past 40 years, so I can't complain about them anymore. I need to buy batteries all the time, and they're not cheap. If I run out of batteries, I can run out of hearing power, and then I'm deaf until I get to a supply.

The world is nice and quiet when the volume's off. I don't have to hear the laugh track or the scary music, or my partner snoring. I wouldn't give up being HOH if I had a choice.

[txanne.livejournal.com]

Thank you.

[marydell.livejournal.com]

Yes, good point.

[marydell.livejournal.com]

*claps*

[marydell.livejournal.com]

Thanks! But I don't think Charlie's particularly lucky in having us, just that ours is one of those cases where adoption matching works the way it's supposed to. Any credit for me being sensible on this count goes to my sister, who became disabled when she was 19 and I was 6. She's pretty good at balancing an acceptance of what she can't do with an insistence on doing whatever she can do. And her annoyance at some of the ways she has been perceived & treated is epic. So I grew up with a bit of an insider view that's not all shiny and spangled, but not tragicall either. And the same is true of Mike's side of the family - a lot of pride in the achievements of all the kids, based on their unique abilities and/or disabilities.

[elettaria.livejournal.com]

Very well said. "Differently-abled" is the most atrocious phrase and sounds like simple mockery to me.

As for "visually impaired", I actually use that to describe myself. I'm not blind. I'm not partially sighted. But I have eye problems that mean that my ability to read is almost gone, and that's a significant problem, so "visually impaired" seems to fit it about the best. I might use it as an umbrella term for all people with visual problems, but if someone's plain blind then I'm more likely to say "blind". Politeness is one thing, beating about the bush is another.

[elettaria.livejournal.com]

Hi, I'm here through mirrorshard's recommendation. I've just started blogging about disability and computer accessibility in my LJ, including musing on the D word, so he pointed me this way. Excellent post, really well put. I have a cousin who is An Inspiration (look up Mandy Leighton or Leighton-Bellichach - very severe disabilities, astonishing achievements), and I think she's incredible and am full of love and respect for her, but I do wish people would stop drawing comparisons and telling me snootily that Mandy can do something so why can't I?

Unless I'm really missing something, and I've been playing the piano since I was five and was a very keen musician all through school (after that I developed ME/CFIDS, otherwise I still would be), "there's a lot of piano music written for just one hand!" isn't even accurate. There's a little music written for pianists who lost a hand after becoming professionals but wanted something to play. There isn't anywhere near enough to make it worthwhile learning to play the piano from scratch if you only have one hand. In fact I can only think of one piece of music, Ravel's Concerto for the Left Hand, and that's a) hardly beginner's stuff; b) might be a bit awkward if you have a right hand instead.

I took up the recorder briefly a while ago and noticed quite a lot about one-handed recorder playing. It sounds like that is a decent option, and it's an instrument which is child-friendly too. A number of manufacturers have made recorders especially for one-handed players, for instance Dolmetsch (http://www.dolmetsch.com/goldseriesrecorders.htm), who say they've been making these recorders since the 1930s. Also it mentions a charity in the UK which specifically hires one-handed recorders to children. With that much going on, I should think that one-handed recorder playing should be very possible indeed, and it shouldn't be too hard to find a teacher or musical repertoire. Don't get put off by grim memories of groups of children making an awful tootling noise together, go and listen to a Telemann recorder concerto and you'll realise that it's actually a very beautiful instrument.

Another option is singing. I was in anything up to several choirs a week, plus the odd orchestra and bashing away at piano duets with my best friend, from the age of nine until I left school. It was enormous fun, great socially and gave me a fantastic musical education. Boys tend to have the advantage in children's choirs as their voices tend to be better and there are fewer of them. Then their voices break and there's still less competition, since more women than men go for choral singing.

[marydell.livejournal.com]

Hi and welcome! Thanks for the tip about one-handed recorders. I'll look into that. We're most interested in finding something he can play in a band (school or garage) & that will be useful in learning more advanced theory and composition type stuff, in case he takes to it. We want him to have access to a range of instruments but it would be good if he could really excel at something band-friendly. (That being the dominant paradigm in our neck of the woods & social circle). Trumpet and voice both have the advantage of being appropriate for a lot of musical styles, so he could rock out or he could do something proper and classical.

Of course, this is all assuming he actually is into music. He certainly loves listening to it, but so do I and I suck at playing instruments.

[elettaria.livejournal.com]

Yes, I hadn't looked through your journal before replying and assumed he was 6 or so, rather than less than a year old! He really is the cutest baby I've seen in a long time.

On looking up one-handed piano playing, it seems that there is a certain amount available, including a book which lists over 1000 pieces, from beginner through to professional. That isn't much in the grand scheme of things, but it might well be sufficient if he wanted to add piano as a secondary instrument. For example, if you study music at university in the UK, you need to have piano up to a certain level, and it's handy but not essential to have the rudiments at secondary school. It makes it easier to learn about harmony, and exercises such as figured bass and counterpoint. Electronic keyboards are fairly cheap these days and have so many exciting features (translation: I'm a classical musician and snobby about the sound so I never use them, but I do realise they do extraordinary things these days and am somewhat in awe of that) that you could probably get enough out of it for a decent jamming session even with one hand.

Recorder does seem to be the instrument which comes up the most for one-handed playing. As you said, you don't want him to be always disadvantaged on an instrument where he can only play a tiny amount of the available repertoire, you want an instrument he can play more or less normally right from the start, and it looks like recorder would fit that. You can't alter your technique on a piano to compensate for having five fingers instead of ten, but it looks like you can on a recorder. Obviously it's an instrument with a classical focus, particularly the baroque period, but it's also great for folk music, and googling "jazz recorder" brought up a fair number of results, including this one (http://www.jazzrecorder.com/), so I think there are distinct possibilities there. I know of a fabulous jazz harpist (http://hipharp.com/), you'd be surprised at what you can do with the less likely-sounding instruments. As for groups, in primary school the recorder is insanely popular so you could put him into one of those tootling groups, which is probably either torture or great fun for the child and undoubtedly torture for the adult (but not as bad as hearing some learning to play a violin, that sounds like cats being killed slowly). Once he gets older, there is the option of recorder consorts. Recorders come in a wide variety of sizes, with the most popular two (soprano/treble and alto/descant - soprano's the one kids are more likely to take up, alto is the one that the majority of the solo music is written for) being available for one-handed use, and you can put the different sizes together in groups to form a recorder consort, which gives you the group playing options. You can also play recorder as part of a folk group, or part of an early music group (ranging from really early, medieval with drums and such, to the more usual 17th-18th century, e.g. this one (http://www.fleuri.co.uk/), where the cellist is an old school friend of mine). The instruments are relatively cheap, which is also handy. Probably the best one to start him on.

[elettaria.livejournal.com]

As for brass, since you seem keen on that, I dated a trombonist for 6 months once and he used to bore me silly on the subject. I have no idea how possible it is to play brass one-handed, but I'd suggest starting by looking at the cornet, since it's pretty much the smallest in the family and weight will be a consideration for one-handed use. I think you can start playing the smaller brass instruments relatively young, my ex's idea of getting broody would be to talk about handing a cornet to a four year old. Mind you, you mentioned that you're looking into prosthetics, and while I doubt that a prosthetic arm would be up to the very fine control needed for things like playing the piano, it should certainly be up to supporting the weight of an instrument. I'm only guessing, though, since all I know about being one-handed and prosthetic hands is what I've read in a novel by Sara Maitland called "Home Truths", which is very fine and I think you'd particularly enjoy the disability politics stuff, but was written in 1993.

All this is pure speculation, of course, since he's still a baby!

Nice to meet you as well. I really enjoyed reading your journal, so I've added you to my friends-list, if that's OK.

P.S.

[elettaria.livejournal.com]

Coolest prosthetic ever! (http://www.telegraph.co.uk/news/newstopics/howaboutthat/4839818/Disabled-woman-given-mermaid-tail-to-help-her-swim.html)

[klgaffney.livejournal.com]

i think the detractors of the word "disabled" are being mildly ridiculous. i think your take on it makes good sense. to say that he's "not disabled!" completely blows off the reality--he actually does have to work harder to manage things in a society that's based on most people having two arms. people need to deal with their attitudes towards disabilities. taking the word away doesn't make that happen, or actually change anything, or solve any problems.

and "different-abled" is just ridiculous--that doesn't mean the same thing at all. whenever someone says that, i get the idea that the disabled person has developed a remarkable new super-power that replaces the lack elsewhere, like having sonar instead of eyesight.

[icecreamempress.livejournal.com]

Very late to this party, but I know someone who was born with one average-shaped arm and one very teeny vestigial arm, and he was a very good trumpet player.

And Wingy Manone was a very famous one-armed trumpet player.

Charlie looks like he's going to grow up with a good mouth and cheeks for trumpet.

[marydell.livejournal.com]

Charlie looks like he's going to grow up with a good mouth and cheeks for trumpet.

Seriously. What's goofy is that my husband is similarly full-faced (http://www.flickr.com/photos/marydell/3222825193/in/set-72157612957944136/), and so people think they're biologically related.