He’s not a saint; he isn’t even dead yet!!!
Oh, gosh, where to start???
This will, no doubt, be a somewhat wandering quasi-rant, so bear with me as I range over a variety of topics.
I’m not unhappy to see Mr. Reeve alive and struggling (I won’t say “well” because that would imply some sort of normality, and his situation is not normal). His son produced a tasteful documentary on Mr. Reeve’s life that aired recently, and I’m glad the man has found reason to wake up in the morning despite the on-going problems caused by his injury. Was he a great actor? No. What difference does that make?
Pet Peeve about the media depiction of Mr. Reeve’s current and on-going predicament. It’s too PRETTY.
My husband was born with spina bifida (BTW Cosmopolitan - many women with the condition have successfully given birth to children despite the wheelchairs. If you want children there is a very good chance you can have them.) He is exceedingly fortunate in that he is actually able to walk, ride a bike, and do many things normal folks can do. But he didn’t walk until he was 9, didn’t get rid of the wheelchair until he was 16, suffered numerous complications that wound up with one leg needing major reconstructive surgery. He can’t run. He has never and will never dance with me. For a disabled person he is not very disabled, but the problems are always there. Even as highly functional as he is - he’s a potential poster child for the wonders of medical and surgical science - not a day goes by when he is not in pain to one degree or another. In addition to the more typical urological problems of a man in his 40’s he also deals with others from the birth defect. Because he has reduced feeling on his buttocks (despite being able to walk) he has managed to acquire, from time to time, pressure sores as big as the palm of my hand from sitting too long in one position. Mind you, we’re talking about sores that can go all the way down through a full thickness of skin, right to the muscle tissue underneath. And that’s in someone who can and does stand up. In someone who can’t… well, they can go right to the bone, if neglected long enough, and become fatal. Walking during the winter can be extremely hazardous. Because of on-going back problems he is severely limited in what he can lift. He’s not a “hero” for putting up with this - he doesn’t have a choice. It’s like calling someone a hero for blinking.
Oh, and let’s touch briefly on the “brave, long-suffering spouse” myths. Like I’m some kind of fucking saint for “putting up with” doing all the heavy lifting around the house, all the snow shoveling, all the climbing on chairs and ladders and stools… I didn’t marry a disability with a name, I married a man who has problems with some things. Heck, I’m colorblind, that doesn’t earn me points, does it? I carry in the groceries and he makes sure I don’t wander off to work with one sock green and one sock blue. (I can’t always distinguish between dark green and navy blue. Apparently everyone else can.) And don’t even get me started about how, when the car stalled one day, some interferring busy-bodying came up and started giving my husband hell about making his wife push the car and how that’s a MAN’s job. Fuck you, asshole.
Christopher Reeve admits that he was suicidal after the accident - well, that strikes me as a fairly normal response to being told you’ll never breathe on your own again, much less move. Of course, that’s the point the person realizes that even if they want to, they can’t kill themselves - they’re helpless even to die. Pretty horrible, ain’t it? Of course it is. Let’s NOT pretend that that sort of disability is somehow “wonderful” or “full of lessons” or whatever other claptrap is being spouted this week. I do get pissed at the media darlings talking about how “well” he’s doing. Well? Pressure sore on one ankle so bad they were considering amputation? Excuse me? And that’s just an item we know about? He is not a well man. No quadraplegic is ever really “well” as an able-bodied person understands the term. Long term survival requires round the clock nursing care and a team of people to keep the body going.
What is shown on stage is a sanitized version of quadraplegia. I’m sorry, a grown man requiring diapers, catheters, unable to realize when his body is being damaged, needing assistance to bathe, eat, turn over, breathe, and wipe his ass - when you find out your bowels or bladder have functioned by telegram instead of by feeling it - that is not a pretty picture. That is not “well”. That is not the image of Superman triumphing over adversity. That is, however, the reality of the situation. If Mr. Reeve has found some meaning in his life, if he has found happiness and purpose and a reason to continue living, then more power to him.
Then we get to the whole question of how Mr. Reeve “should” be living his life. You have the camp who is gung-ho on him pushing for reasearch. Then you have another camp who feels that money should be spent on helping people NOW - such as the “you-only-get-one-catheter-a-day-becauses-that’s-what-Medicaid/care-pays-for-and-too-bad-if-you-get-another-bladder-infection” crowd. You know what? It’s his goddamned life, he can spend it any way he chooses - promoting research, promoting care, or just sitting at home listening to CD’s. His choice. He doesn’t “owe” other disabled people jack shit. It’s damned nice he’s decided to do something to help others, and for that he should be recognized as a decent human being, but it’s his choice and if he changes his mind… well, that’s his business.
It ties into the myth of the “good cripple” - never mind that even the most saintly cripple is as mean as a junkyard dog from time to time. The myth of the retarded children who are somehow more innocent, more noble, more… well, saintly than normal children - never mind that a four year old mind in the body of a 30 year old man having a temper tantrum can be downright dangerous. The idea that the blind are somehow more spiritual, or muscial, or… well, there’s a lot of hoseshit about the handicapped. They’re just PEOPLE, goddammit, with all the faults and talents of anyone else.
Let’s see… stem cell research. Sounds promising, doesn’t it? Well, it might not work for a long long long long time. They did some work with Parkinson’s involving that, actually inserting stem cells into the brains of the afflicted hoping to generate new dopamine-producing cells. The outcome was so horrible they had to stop the experiments. It’s not that the cells didn’t work - they worked too well. Folks got sort of an anti-Parkinson thing going. Instead of their bodies not moving their bodies wouldn’t stop moving. Even in their sleep. And we can do even less for that than Parkinson’s. Oh, and there was the one experimental subject, a woman, who’s “fetal cells” decided to turn into a tumor. Quite horrible, all around. Oh, you didn’t hear about that? Funny, how the media doesn’t ever seem to report the bad outcomes… Yes, it’s promising. That doesn’t mean it’s a cure. Or that it should be undertaken lightly. Yes, I’d really like to see stem cells for neurological problems work out - it would likely help my husband as well as a lot of other people - but there are limits to what I (and he) are willing to pay to achieve that goal.
Oh, and to round things off - the issue of “do you miss what you don’t have?” Yeah, I think you do. Those who are blind from birth might never have seen anything, but they ARE aware they are missing something, something important to those around them. Ditto for the deaf. I can’t imagine that a child without functioning legs doesn’t wonder what it’s like to walk on two sound feet, or run or skip. I can’t imagine that a child without hands doesn’t wonder what it would be like to have them. A child with no voice surely must, from time to time, wonder what their voice should have sounded like. On the flip side - I don’t think they spend every waking moment dwelling on it.
The only close to that I’ve experienced is with food allergies. Because of them, there are some foods I can no longer eat - ever - and others that I have never had and never will have. Does this bother me? Sure, sometimes. Let’s be honest - sometimes I’ve been moved to tears. I can’t EVER eat a meal without some worry. Some days I wonder about the flavor of a burrito with all the sauce and fixings would be like. I’ve never eaten salsa. Or chili - but it sure smells good sometimes and other people enjoy it so much. On the other hand… most days I eat what I can, enjoy hunting down new foods I can eat, and if I DO have a problem I deal with it. That might mean passing on a dish, or stalking into a restaurant kitchen to speak with the cook, or even interrupting a meal to fetch medicine because I slipped up (and thanks again for being so understanding, Mr. Billy Rubin). That doesn’t make me a saint OR someone “trying to get attention”. I’m just me, dealing with my problems. Just as my husband doesn’t weep and wail about not being able to run marathons. He is just himself, dealing with his problems as best he can. If he does good in the world it’s not BECAUSE he’s some saintly cripple, although sometimes he gets things done despite being disabled.
Likewise, Christopher Reeve might be worthy of praise for working for charity, for trying to help those less fortunate in some ways than himself, for any number of things. But he is NOT worthy of praise merely because he survived a catastrophic injury.
At a nearby rehabilitation center Christopher Reeves was asked to come and speak for some gala fund raising event. Tickets were very pricey. It was considered a big coup by the administration and staff.
The residents staged a protest. They didn’t want him. From what I remember, their feeling was that his whole premise is that there’s something so horribly, horribly wrong with being in a wheelchair that a cure needs to be found.
This bugged people who, for whatever reason, would not be walking again or had never walked to begin with. It bugged them that he was in denial and instead of accepting what had happened and living his life, he makes it a huge crusade to cure spinal cord injury.
I think some people took it personally, like he was sending out the message out that being in a chair is for losers and he was going to fight it and everything that it entails with his last breath. Nobody likes being stereotyped like that.
Some people I talked to had mixed feelings because they felt although he was bringing attention to getting more research done he was also defining people by their handicaps.
From Broomstick: * "It’s his goddamned life, he can spend it any way he chooses - promoting research, promoting care, or just sitting at home listening to CD’s. His choice. He doesn’t “owe” other disabled people jack shit. It’s damned nice he’s decided to do something to help others, and for that he should be recognized as a decent human being, but it’s his choice and if he changes his mind… well, that’s his business. " *
Agreed and agreed. But the catheter thing is from one of my posts, so I’d like to clarify. Since Reeve is trying to help others along with himself, I’d like it a lot more if, as you pointed out, the media was painting a more accurate picture of the likelihood of any of these options working, a more accurate picture of what his life is really like, and a more balanced view of the kind of care he is getting that most other people CAN’T get. I don’t blame Reeve – but there are an awful lot of people who don’t get it. And I used to be one of those people. My own beef with the whole issue is that I now spend a great deal of my time with a man who is paraplegic, and I hear a lot of ignorance: “I admire you because you’re handicapped and you must have such a hard life!” all the way to “Don’t worry, old man - they’re working on a cure!” A) Most people don’t know jack shit about how hard his life is, and B) Get real. It’s not gonna happen in his lifetime.
Um… about those wheelchairs… Yes, there is something wrong about being in a wheelchair, in the sense that the human norm is being about to walk on two feet. There is also something wrong about the commonly heard term “confined to a wheelchair”, as if it were some sort of prison sentence. First of all, disabled folks who use wheelchairs are NOT “confined” to them - they are certainly permitted to leave said chairs and may do so multiple times per day. They also use other forms of transportation (if their disability allows for it) like cars, horses, and airplanes, just like regular people do (although there may be some modifications of the controls to be strictly hand operated). For someone who can’t walk on their own a wheelchair can actually be liberating, not confining. It’s what allows them to get out of the house, move around, see the world. It’s not a perfect device, but better than having to sit in bed all day, be carried around, or crawl wherever you go. I cringe every time I hear “confined to a wheelchair”. Why not say “uses a wheelchair”? Because that’s what they do - use it. As a tool. When they need to. They aren’t chained to it.
Denial - well, of course Mr. Reeve was in denial in the beginning. It’s quite normal to be in denial after a catastrophic injury. The question is… is he still in denial? That depends on how you mean denial. Never heard him deny he’s a quad. He hasn’t thrown the health aides and nurses out of the house. He does deny there is no hope of a cure or recovery… well, maybe that’s something that helps him wake up in the morning, I don’t know. Seems to me some folks are upset because he doesn’t become a “good cripple” and talk about how he’s suddenly found the Meaning of Life and how being a cripple isn’t so bad. No, he’s honest - being a quad sucks. There’s a lot he doesn’t like about it. He has no privacy, continual health problems, and he’s more helpless than a six month old baby. The media doesn’t want to hear this either, but he’s said it in numerous interviews where, somehow, it gets glossed over.
Is there something wrong with wanting a cure? What if he does help bring it about? What then? Are these protesters going to refuse the cure and stay in their wheelchairs? Is there some jealously that Mr. Reeve has the wealth to do something other than merely survive hand-to-mouth? It’s almost laughable to think that a respirator-dependant quadraplegic is out to help the less fortunate - but the truth is he IS a lucky man. He can afford top notch care, his wife didn’t desert him, and he’s actually able to find work. That would be fanstastic even for a lot of folks with “just” paraplegia.
What if this exercise regimin he’s got going really DOES improve function in spinal cord injury, as it seems to have done for him? Not to mention improved his overall health? Isn’t THAT significant? What if we can get some folks off respirators by doing this? What if people who lost the use of their hands can regain enough to feed themselves? It’s not a full cure - but isn’t it worthwhile? Well… ONLY if others have access to it. Who’s going to pay for it for the impoverished folks? And would it help someone who never had that function in the first place? I don’t know, but it seems to me these questions are worth asking.
Are wheelchairs for losers? Not inherently. But there are people who surrender to being handicapped and allow a disability to define the whole of their lives, let it limit them where it should not. Then there are people who are blind and climb Mt. Everest, are deaf and compose music (and not just Beethoven - there is an English percussionist who is profoundly deaf), and use wheelchairs to “run” the Boston Marathon. Yes, the above examples are exceptions. But they didn’t accept the label “handicapped loser unable to do anything”. Then there are the very ordinary folks where I work - a deaf accountant, several “little people”, and three computer techs - who are just ordinary folks earning and ordinary living in ordinary jobs. Does using a Sign interpreter for meetings make James a “loser”? No, of course not - but being able to hear would remove some inconvenince in his life. Does a step stool make a little person a loser? No - but being a foot or two taller would remove some inconvenience in life. Does being blind stop Mike and Mike and Mike (yes, they do call themselves “The three blind Mikes” :rolleyes: ) from cruising the Internet? Nope - but they have some creative swearing for overly-elaborate visual graphic pages than make their text-to-voice software choke from time to time. Are people in wheelchairs losers? Of course not - but any time you come to a curb or step or sandy patch of ground you can’t tell me there’s no inconvenience!
Me, I think some of the prostesters are themselves convinced that the chair makes them a loser. They’re trying to solve the problem by yelling “I’M NOT A LOSER!” over and over as loud as possible. Why don’t they get their asses in gear and do something like have a life, take up a cause, and show that they are still capable of doing stuff with their lives? Oh, I’m sorry, we’re not supposed to criticize the los— >cough< >cough< the handicapped. Well, they want to be treated as full human beings - that includes being told when they’re full of shit.
Yes, there are some disabled folks who, through no fault of their own, are at the mercy of public aid and given half a chance WOULD do something with their lives. And there are plenty who could be doing something, but don’t. Just like you see with the able-bodied.
I’ve been following this thread with great interest, because I have mixed feelings on the whole Christopher Reeve as hero/inspiration to others/advocate for spinal injury cure issue. As has been pointed out, anything that raises public interest to a disease/condition and results in increased effort for cure or treatment is a Good Thing. Making a hero of somebody because they are a celebrity who is now “overcoming adversity” can (as this thread proves) cause resentment by those who are facing the same problems but don’t feel that they are doing anything particularly heroic by just going on with their lives.
The issue of quality of care is the one that gripes me the most. Shortly after his accident, when it became apparent that he was going to live, the media was making a big thing about how his life was changed and how he needed constant care and showing all the equipment needed just to maintain him, my wife had two comments:
“Well, I guess I don’t have it so bad after all.”
“I wonder how long we’d have had to fight with our HMO to get authorization for all that.”
As Broomstick pointed out, Mr. Reeve was fortunate in that he had the money to afford the best possible care. I don’t begrudge him that, especially after hearing that he had freely acknowledged that he was getting care that others would not. When my wife’s condition had reached the point where she could not walk more than 20 feet without assistance, her doctor had authorized her to get a motorized wheelchair. We had already purchased a used wheelchair, but because of the limited use she had of her right arm the only way she could move herself forward in a straight line was by using it as a glorified walker. When we called our HMO, however, we were told than even with the doctor’s authorization they would not pay the cost of an electic wheelchair. It took three months of pestering by our doctor (one of the reasons we later changed health plans to be able to keep seeing him) before they changed their mind.
And I can certainly concur with Broomstick’s comments on wheelchairs as liberating rather than confining devices. Before she got her scooter (it was decided that a scooter was better suited to her needs than a wheelchair) my wife was pretty much stuck in the house. After she got it, she thought nothing of going shopping or even just out for a “roll” around the neighborhood. It certainly made our annual Las Vegas vacation more enjoyable for both of us; she could go where she wanted and I wasn’t “stuck” with having to push her around.
I don’t get all this “denial” bullshit. Had his injury occured twenty or even ten years earlier, Reeve would almost certainly be dead and if not, any chance for any recovery would be nil. As it stands, though, he’s received his injury just as we’re on the verge of dramatic leaps in medical science. Reeve could easily live another 30 years or more, and no-one on this board (and no-one generally) has any idea of what will be possible within that time.
Accusing Reeve of living in denial just makes you sound like a schmuck in 1964 who says “man will never walk on the moon: it’s impossible.” Fact is, with enough time, money and ingenuity thrown at a problem (and celebrity involvement can increase all of these), things become possible.
Broomstick-BRAVO. That was beautiful. One question, though-I thought only males were colorblind?
Oh well.
He is a hero-but for another reason-I was reading an article about him in Rosie (hey, there was NOTHING to read last night, I was trying to relax, I’m sick and I can’t sleep).
Well, he seems once, when he was feeling really low and depressed (I believe this was BEFORE his accident!), he decided to check out $cientology. At first he went along with it-but then, he began to get skeptical. For past life regression, he pulled something out of his ass-told that he was an ancient Greek prince who forgot to switch the black sails for white ones-a code to tell his father if he lived through a battle or whatever. (I believe it’s an ancient Greek myth?)
And the people bought it up! So he exposes $cientology! And that=good.
I always did like Reeve. No, I don’t think he’s a saint-but he is cool.
This article talks a little about the split in the disability community on Christopher Reeves as a spokesperson.
http://www.ican.com/news/fullpage.cfm?articleid=87137D1E-F803-43B0-A5C546E43303B169
Anthropologist Robert Murphy's book, **The Body Silent**, discusses in depth society's attitude toward people with disabilities. Some excerpts:
"Thus ”the hero” is one of the rare positive roles open to persons with disabilities. It is not surprising then that some of them not only avoid complaints about their situation and put their nondisabled peers at ease with a serene compliance, but also go beyond this by ”overcoming” the odds of being disabled. The ”supercrip” – the ambitious paralympics athlete, the paraplegic single mom working full time and volunteering for a charity organization, as well as the blind man climbing a mountain – is accepting the treatment imposed on him by an inaccessible and ableist world, but does not accept his own bodily limitations. He too plays into a socially desired role of the achiever, which is, however, not only expected from disabled people, but from everyone in a capitalistic society. The ideology of the self-sufficient individual that is capable of ”pulling himself up on his bootstraps” is a common legitimization for blaming failure, especially economical, on the victim. In societies where the responsibility for the well-being of its citizens is largely relegated to themselves, achievement and endeavor in the competition is expected.
Critics among the disability rights movement view the public portrayal of supercrips, as for instance the appearances of disabled actor Christopher Reeves, as damaging to ordinary lives of disabled people, because it fuels high expectations of performance in an ableist society. The ideology of overcoming disability once again individualizes disablement and also distracts from access and attitudinal barriers.
But this form of glorification yields something, which again does not serve the needs and psychological realities of the disabled person – but of the able bodied one. It is another means to set themselves apart from bodily aberration, this time not in a patronizing, dominating way, but from a standpoint of awe and admiration, which has the belief of ”I am not like her/him” at its core.
At the same time that able-bodied people wonder why and how the disabled person ”copes” and ”manages” so well, they in fact expect the disabled person at least to strive for adjustment to his or her situation. While they want the disabled person to accept his or her role, they also acknowledge that it is actually ”unfair” that not they but the other person became disabled. A cheerful disabled person therefore can relieve able-bodied people from their perceived guilt of being healthy, and it is the easiest way for them to deal with their own vulnerability to disability and illness. That the disabled person has to do most of this interactional management is a price most disabled people have to and are willing to pay in order to be accepted and tolerated in the able-bodied world."
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A common misperception.
Estimates of the frequency of colorblindness in men vary, but seem very roughly equal to the frequency of left-handnesses (the two are TOTALLY unrelated other than percentage of population affected). Colorblind women only make up 1-3% of the population - but in the US that’s 1 to 3 million girls and women affected. World-wide, about 80 million to 24 million affected females. So, while the percentages are low the actual number of individuals is considerable.
Also, although the most common form of colorblindness affects mainly men, there are other forms that affect both sexes equally. Yes, there are several forms of colorblindness, but I’ll leave it at that for now.
If you’re still curious, ask in General Questions.
I am fortunate to not be greatly affected by this, but occassionally I do confuse pastels or very dark shades of certain colors, especially in light other than natural sunlight.
Now, hold on a cotton pickin’ minute.
I’m married to a “supercrip” of sorts - the man with spina bifida who scuba dives, flies hang gliders and airplanes, drives motorcycles, holds 3 patents, has marched with brass bands and bagpipe bands in street parades, and owns and runs his own business.
Now, he doesn’t complain - in public. He’s accepting - in public. In private, he can swear a blue streak and put my ranting to shame, he’s shed tears over the harsh and prejudiced world, and in general given vent to his frustrations.
Are we going to label successful gimps as “supercrips”, people in some sort of weird denial? Or are we going to recognize that you can be able AND disabled at the same time? Steve Wonder is blind - he will never drive a car - he has never seen the face of his wife and children. He is ALSO a very successful musician, able to support himself and his family in high style. Is he a “supercrip” in denial? Or is he a successful human being? I vote for the latter.
Why should someone stop climbing mountains just because they can’t see?. Why should someone stop being an athelete just because they can’t walk? This anthropologist says these people do not accept their bodily limitations - to my view, it looks more like he is imposing unwarranted limitations on them. If a blind man climbs the tallest mountain in the world then he OBVIOUSLY is not “limited” by his lack of eyesight as far as achieving that goal is concerned. (He still can’t sort his socks by color or drive a car - but you don’t need either of those skills in mountain climbing) Indeed, climbing Everest is beyond the reach of MOST of the able bodied of the world. If a person can roll the Boston Marathon in a wheelchair they are STILL an athlete even if they lack feet.
The blind man (whose name escapes me at the moment) who recently climbed Mt. Everest did NOT do so as a stunt. He’s been rock and moutain climbing since the age of 8 or 9, and he climbed peaks on every continent prior to his successful expedition to Everest. Is he a “supercrip in denial”? What bodily limitation is he denying? His BODY is in great shape, it’s his eyesight that’s lacking and he’s clearly found a way to compensate so he can continue an activity he is passionate about. He owes no one an apology.
Maybe there’s the old argument about “don’t do that, you might hurt yourself”. (My husband has heard it all his life). The best reply to that came from an Internet acquaintance with the sig of Arachne, a paraplegic who’s hobby just happened to be racing Ferraris. Not, mind you, on a “gimp” circuit but in open competition with the able-bodied. This intially caused some consternation, and her reply was along the lines of “Oh, let me get this straight, you don’t want me to race because you think I might get hurt, maybe crippled, and be in a wheelcha-- >squeak< >squeak< Damn! I have to oil that axle when I get home. I’m sorry, what were you saying about accidents and wheelchairs and how horrible it would be if I wound up in one?” Yes, she races. Sometimes she wins, sometimes she loses - just like everyone else on the circuit. Where is the “physical limitation” she should accept here? I don’t see one as far as driving is concerned, do you?
Attitudes like the one quoted above seem to downgrade the legitimate achievements of folks who happen to have a disability. And that’s disgusting.
In other words, he is trying to act like everyone else? There is something wrong with that?
You know, the able-bodied homeless suffer from this, too. Is it REALLY a problem of disability, or of poverty? Yes, there is a relationship between the two, but that hardly means a wealthy and successful cripple is somehow duped or playing a part.
I’m of two minds on this. I do think the Reader’s Digest/Hollywood script of the disabled person becoming somehow better, achieving some transcendant understanding, or “overcoming” disability to live in a happily ever-after dreamworld that nobody inhabits, able-bodied or disabled, is damaging.
On the other other hand - I have heard too many times comments from the able bodied like “If was in a wheelchair I wouldn’t want to live.” Well, seeing someone like Christopher Reeve who has rediscovered a desire to live after what is most certainly a horrific accident is a GOOD thing. Seeing disabled people live meaningful lives, lives they very much want and value, combats the idea that a disabled life is somehow less valuable, less worth living. How about another example - Stephen Hawking is a major scientific intellect of our time, holding a very prestigious position and heir to the chair of Isaac Newton. This is no small potatoes. Yes, arguably, he is even more disabled than Reeve is, being unable to speak as well as largely unable to move. He is yet another example of a person being BOTH able and disabled at the same time. Should he stop thinking, give up his job, and go on the dole because he’s an example of a “supergimp”? How ridiculous! The notion that someone of extraordinary talent should be held back because of a simultaneous disability is just terrible! It would be like saying that a successful African-American is a “superblack”, is causing “unrealistic expectations” among whites as to what other, less talented and less fortunate African-Americans can and will achieve. Just what is being advocated here? That we hold back the talented and gifted because their success might make someone else uncomfortable?
Yeah, I fear accidents, illness, deafness, blindness… all sorts of things. But because I have been around the disabled (and not just since I met my husband) I know that even if something horrible happens to me I can still go on living. I can adapt, I can adjust, I can still have many of the things I still have. Losing my sight would be devasting - but I’d still have my music. Losing my hearing would be devasting - but I could still read, still fly planes (although where I could go would be somewhat limited). If I could not walk I could still do my needlepoint. I think the most horrific thing to me, personally, would be to lose the use of my hands, but I know people have survived that and gone on to have lives worth living.
And that, really, is what needs to be gotten across to the able-bodied - that disability is not equivalent to death, that while it does close certain doors other still remain open. People ask me why I was willing to marry someone disabled. Maybe it’s because I don’t go around all day thinking “he’s a gimp, he’s a gimp, he’s a gimp.” I focus on the can, not the can’t - not as a form of denial, not some rose-eyed view of the world because we DO have to deal with the “can’t” on a daily basis as well. I didn’t marry a disability with a name, I married a man who can a LOT of neat things, but can’t do a few others. I’d say I forget he’s disabled - but that sounds like denial, and in fact, we don’t forget. But, in fact, in many, in most things, he is NOT disabled. It’s only a subset of human activities that are affected, not the whole of them. And that’s true for more disabled folks than not. Even where disability is severe, some things are still not gone. It is not wrong to find value in the enjoyment of the possible.
Originally posted by Broomstick:
Thanks for that comment - I haven’t discussed the whole plan with a doctor/counselor 'cause, well, I’m not quite gearing up for motherhood yet. 
I think your posts are wonderfully eloquent & on-point, BTW.
Damn right, & I believe that too few able-bodied people realize this.
I become frustrated when awed people say that they “couldn’t do it”. I reply to them that yes, they very likely could & would adapt if the alternative was death or life as a shut-in.
I mean, I don’t like having my disability. It makes a lot of shit much more difficult. However, today, there’s no alternative. I must use a wheelchair to get around; deal with my problems in the best ways I know how; be as self-sufficient as possible. How can I find the strength to do it every day? I think the answer is, “How can I afford not to? It’s not strength, it’s my life”
If I decided that living in society was too hard, I’d never have ridden the Long Island Railroad, never would have visited many cool places in New York City, never have met certain people, etc.
I’m not a wheelchair, as many people have referred to me (“Little Johnny, watch out for the wheelchair!”, “How many in your party - three people and a wheelchair?” Motherfuckers.), & I don’t dwell on the disability, although I can’t ever forget it.
And Broomstick, I can dig your hubby not complaining in public - neither do I, 'cause I know that no one wants to hear it. That’s just how people are.
That really burns my ass, as well as discourages me. Jesus H. Christ on a stick!
A) Who the fuck are random fucking people to comment on your marriage, much less criticize your choice of mate?
B) I love it that they don’t ask, “Why did you…?” or, "Why did you choose to, but why you were “willing” to marry a man with a disability. Like you were doing the poor crippled guy such a huge, unwarranted, undeserved favor. Would they have you marry an able-bodied man only to divorce him in the event that he became disabled? Of course, the disabled guy has nothing to offer to begin with - therein lies the difference!
I guess I’m doomed to a life devoid of a romantic partner.
Man, if I had a penny for every time someone said something tactless to me…
Yeah.
SIZE=1]Originally posted by Guinastasia:[/SIZE]
Yeah, it was Theseus, apparently. The story sounded familiar to me as well, so I Googled it.
http://www.loggia.com/myth/theseus3.html
http://emuseum.mnsu.edu/prehistory/aegean/pre-greece/minoan/minoan.html
etc. etc.
I don’t believe Robert Murphy is advocating that people with disabilities stop striving to reach whatever goals they’ve set for themselves. I think he is relating what he has experienced as a paraplegic in society and also what he perceives society’s reaction to disability is.
My point was that among independent living/disability rights activists, there are people who object to Reeves as a figure- head/spokesperson.
Thank you.
Well, to some extent everyone gets the "why did you marry THAT?! routine (got a sister who married a man 17 years older than her and she gets rude age questions), but hubby being disabled seems to bring the weirder questions out of the woodwork.
Um, yeah, that’s exactly what some folks think. They also assume he’s totally dependent on me - which is bogus. For the first four years of our marriage he was the breadwinner of the family and supported me.
There are some people who do think that way. Divorce does occur in many instances after a disabling accident. Certainly not all the time, but it does happen.
The disabled teen is at a serious disadvantage socially, there’s no doubt of that, but it’s been my observation that the older folks get the more this problem starts to fade (doesn’t ever entirely go away, unfortunately). My husband seemed to be very successful with the approach “I’m going to live my life anyhow” and he went out and did stuff, all sorts of stuff, so he met a wide range of people. Sure, there were a lot of jerks in the mix, but he found and hung out with the good ones. He’s now with a crowd of folks who, if they’re going somewhere involving a lot of walking in crowds will cheerfully inquire about scooter rentals and then, when inviting him, offer him the option in the perfectly ordinary manner. Which is as it should be. Just a matter of fact dealing with an inconvenience or problem, then on to the rest of life.
No, you’re not. It will certainly be more difficult for you, I wouldn’t lie about that, but not impossible.
Broomstick, thank you truly for the encouragement, but the “devoid of a romantic partner” thing was actually supposed to be sarcasm - I forgot the :rolleyes:.
I’m 23 & have been dating since age 15 - I’ve had decent as well as good & great romantic relationships - I’m just mildly sour about finding a partner 'cause I’m interested in some guy & I can’t figure out whether my interest is reciprocated. Driving me fricking insane. But that’s a story for a different thread.
Oh, & thank you, those who’ve visited this thread: This is the first thread I’ve created that didn’t die after four posts. 
I guess I can be the voice of someone that could walk, but can’t anymore thanks to a car accident.
by Cosmopolitan
It isn’t the equivalent of death, you’re right, but in my opinion, it’s real close. Maybe I just think that because I nearly died in the car accident. I find myself wondering that all or none (meaning walking or death) would have been better than the in-between (meaning paralyzed) that I got. It also feels like I’m living for other people instead of myself. I don’t give up for my family, and I’m hanging in there hoping that there will be something that comes along to “fix” me.
That doesn’t mean that I’m being a shut-in. I still do a lot of things that I can still get enjoyment out of, and I keep myself strong so that if something ever comes along I’ll be as prepared as I can be to take advantage of the opportunity, and I’m going to school. All that stuff keeps me busy enough so that I don’t think about my situation too much.
I know what you’re saying Cosmo about all of that. About the stupid stuff people say, I just brush it off. It got to me at first, but when I realized that I would keep meeting new people and that they’d say the same stuff, I figured they would outlast me if I let it get me irritated. [How many of these have you heard: you need a horn on that, you need something that beeps when you back up, you need a snow plow, you should get some mirrors on that, don’t fall over (when doing a wheelie), we’re going to have to set a speed limit, etc.]
So anyway, I pretty much agree with the stuff said already. I do appreciate what Reeve has been able to do for bringing SCI publicity, even if the news doesn’t show the real stuff that happens. The bad stuff. Any publicity is good publicity, so I’ll welcome any kind of exposure.