Wheelchairs, wheelers, wheelies, it can all mean something different to each of us. The reason for this website is to make anybody who uses a wheelchair or has some kind of relationship with it be comfortable with it, get plenty of information and be able to share with others.
“Not everyone who uses a wheelchair is a paraplegic and you don’t have to be a paraplegic to use a wheelchair.”
There are many reasons why people use a chair. The most obvious one is for para and quadriplegia. So when somebody sees you in a chair, they usually presume that you have been in a car accident and now you are paralysed from waist down. Nobody’s going to argue that complete paraplegia is not a good reason for using a chair. They will understand it. They will say that you are confined to it but that it is the only way for you to get around. Fairly clear cut. But how about a person who has incomplete paralysis? Mark Zupan is an incomplete quad. He can stand. He can walk some. Yet, he uses a wheelchair most of his time. Why in the world would he do it, most people will ask. And he would tell them that he can do more from a chair. It makes him fast. It saves his energy. But a lot of people won’t understand it. Why doesn’t he want to look more normal? Why does he choose to be a gimp? Because he understands that mobility is more important than walking. People drive cars rather than walk for longer distances. Yet, it’s hard to comprehend that the same thing applies to using a wheelchair. A wheelchair is a means to mobility. There are people who have MS and are in similar situation like Mark. Some will choose to wheel and have fun, some will choose not to and will be stuck in their house under the veil of looking normal. There are many conditions for which people would use a chair occasionally. It would be highly beneficial for their well-being but there is too much stigma connected with a chair. Also, other people always want an explanation. So people hide their need, hide their pain, pop in a few pills and go on.
And then, there is another category of people who might use a chair. People who think wheeling is fun and they will pretend that they need a chair and use it sometimes.
Yet, there is another category of people who use a wheelchair. Persons who have a rare neurological disorder called BIID, Body Identity Integrity Disorder. Their brain is wired differently. The body map in their brain tells them how their body looks, yet the reality is different. When one becomes an amputee, the body map in one’s brain changes and conforms to the new reality. Yet, for people with BIID, their body map might read: an amputee, or a paraplegic, or a person who is blind, yet their body has no impairment that their brain is claiming them to have. It causes a huge mental rift in the mind, it causes pain and depression. But for some, using a wheelchair part time will alleviate some of the pain, it will bring more peace and open the person to a fuller, more real life.
This website wants to unite all wheelchair users, no matter their reason for using a chair. It wants to show that we share many similar struggles while realising that each one of us is unique. I can’t tell anybody if they should or should not use a chair. If using a chair helps you to feel better (mentally or physically), if it makes your life more real, if it brings you closer to others, if it makes you mobile, who am I to judge?
Didn’t know that about Mark Zupan. Cool tidbit.
Gimp is an offensive term in reference to Mark Zupan or anyone with a disability. Would you at least consider changing that?
a gimp can call another gimp a gimp,but when an A.B. calls a gimp “gimp “it is a supreme insult,so,if you dont fall into the category of a non able bodied individual(gimp) dont try to justify the usage of the term until you have been there
@frjfrjh: Thanks for your input. Are you aware that Mark wrote an autobiography titled GIMP? I am using a term for him that he chooses. I am well aware of what words should and should not be used. So in this light of knowledge, does it still bother you?
I am a strong advocate of people first language. I am not politically correct though.
I’m a para but don’t mind been called a gimp or a crip – in certain situations. It’s common for us to refer to each other as crips but it can be offensive when AB’s use the word in a negative way. One of my AB friends affectionately refers to me as his little crip. If meant in a jovial, non- judgmental and friendly way I have no problem with it at all.
Thanks, UK wheeler. That is my understanding too. As I wrote in Wheelchair etiquette article: “9. It is not OK for an able-bodied person to use words like gimp and cripple though it is OK for a paraplegic to call himself that.” Though many AB’s have a problem with it; they say it’s a double standard and if a para doesn’t want to be called a gimp by AB’s, he shouldn’t call himself that either. But I think the reason why it is OK to call yourself a gimp is that you understand its meaning as being a guy who happens to be a para. While for the world a gimp is somebody who is “wheelchair bound” and thus can’t live a good life.
That’s spot on Elisabeth. It’s like the difference in someone saying “I look fat in this” and someone saying “You look fat in that”. Another crip can get away with calling me a crip because he’s a peer, and a friend can call me a crip with no offence taken. However, when society in general uses the term ‘crip’ it’s usually in a derogatory manner so if a stranger called me a crip I’d instantly be on my guard and would probably take offence. Having said that, I think it’s perfectly acceptable to use the term in a forum such as this.
I have read with interest and agree. I would never call anyone a gimp or a crip as to me that would be no different to being racist and refering to someone by their skin colour!
But i really want to be a paraplegic!
To be completely paralysed from my navel downwards and have no movement or feeling whatsoever!
I would love to break my back at about T9 to T12 and to never ever be able to stand or walk ever again.
To need a wheelchair…. to need to use a catheter or diaper/nappy depending on which side of the pond you live. oh yes and to be impotant!
I long to look at my legs and know that I will never be able to move them…. I want no feeling, none at all and when i touch myself below my injury line i want to feel like i am touching someone else!
I long for the day I can sit in a chair with my hands resting on my useless dead legs.
I would give anything to be paralysed…. and can’t wait for it to happen!
I would gladly swap places with any para and would feel lucky and happy
Steve, It is my opinion that you are in need of psychiatric assistance /care,as you have no way of knowing what we must go through just to carry on day to day life. I would not wish this condition on even my worst enemy for even a day and to read your lines wishing for this to happen is distressing .
if breaking your back doesnt kill you you could end up as a total quad and have absolutly nothing below your nose,which would include things like being hooked to a respirator for the rest of your life as what happened to my best friend,when he entertained the same thoughts you spoke of .be thankful that your body does what you ask it to when you ask.If you still wish for this ,just use your immagination ,so when the novelty wears off you can still go back to being as normal as possible ,given your current mind set
Are you crazy you want the embarrassment of little skinny legs smelly diapers not ever driving or taking a walk not ever dancing not reaching your stove cubboard or sink having no life or freedom you want to have people wash you and dress you to not have sex which leaves you without marraige and children todurn or hurt your legs ruin your clothes with blood and not even know it.pretty much you want to watch people have a life while you sit there alone wishing for one never knowing if someone will stop by to help you so you can eat sitting in your own body waste hopeing someone will wash and dress you soon yeah your pretty sick
Cheryc: You are likely correct in supposing that Steve had an overly rosy conception of paralplegia. He admits as much in a later post on this thread, and it appears that he had other psychological issues going on.
Be that as it may I am very much surprised by your own comment. I have many friends with spinal cord injuries, and their experiences are very different from what you describe. One of my young close friends became paraplegic in a car accident some years ago. After this she fell in love, got married, became an expert in extreme wheelchair sports, became a member of her country’s national womens’ wheelchair basketball team, learned to drive and dance, is independent, is able to take care of her toileting without diapers, became pregnant last year, and gave birth to a wonderful baby just a few months ago.
Others of my friends with paraplegia subsequently went to university, became a professional, have full time jobs, etc. One of the paraplegic contributors to this website is a ski instructor, glider pilot, engineer, and very much more.
As far as sexuality is concerned, true I have not had an orgasm since my SCI and I have only partial genital sensation. This did not prevent me from having sexual intercourse with men or other sexual activities with women, including those with gender variance. My friends living with SCI vary from monoparesis to complete quadriplegia. The entire range, whether they be male, female, gay or straight can and have engaged in sexual activity.
My psychotherapist also happens to have a PhD in sexology. Among his specialties is working with people who may have to make adjustments to their sexual life due to physical conditions. This includes those who are intersexed, such as myself. It also includes people with spinal cord injuries. He has worked with many who do not have genital sensation, both paraplegic and quadriplegic, teaching how to regain orgasmic function. He has offered this to me, but I simply don’t have the motivation despite being married.
Many of us have had to learn to adjust our sexuality following the acquisition of disability. This was true for me after I acquired fibromyalgia three decades ago. I own and have read several books on sexuality for people with disabilities. I have not come across what you describe.
I am not at all dismissing what you say about your own experience; it is after all your own experience, and as valid as anyone else’s. However I clearly have a gap in my knowledge of such things. If it is not too much to ask, I would feel better informed if I knew more details of the physical impairments that lead to the life condition you describe. It is so very different from the experience of my friends with paraplegia. Anyone please feel free to chip in if you have knowledge of these things. Thank you.
HeY!!! Im the one you described there lol thank you so much for seeing me in such a very positive light. Since tgan I became a rolling single mommy and switche basketbanational tem to wheelchair rugby team which I love wayyyyyyyy more since it gave me proportions -all my team mates are quads so…. this game is a great way to stay posetiand let it all out haha. I think life is what we make them to be.
***mod please publish this msg*** fixed no typos
HeY!!! Im the one you described there lol thank you so much for seeing me in such a very positive light. Since than I became a rolling single mommy and switched basketball national team to wheelchair rugby team which I love wayyyyyyyy more. it gave me proportions -all my team mates are quads and im a walking para so…. this game is a great way to stay positive and let it all out haha. I think life is what we make them to be.
Steve, are you insane? You don’t know what you are asking for. I wouldn’t wish this on my worst enemy. Please be glad you have your body. There are things we have to do and ways we have to live that you know nothing of, and that no one in their right mind would want to do. Yes, my life is fine now, some 23 years post-injury, but I wouldn’t trade with you because it would be much more than cruel.
Ken. Thank you for taking the time to reply. And no i’m not insane well not totally anyway! I would love to know how it “feels” to have “no feeling”. I guess the novelty would soon wear off but i’d still swap just so i’d know what it’s like to not be able to feel my legs. I know i’d also lose everything from the level of injury downwards. I would gladly accept being doubly incontinent and wear a nappy…. Just to experience when i touch my legs with my hands for the first time and realise I can’t feel them! Honestly i’d be so happy dragging my lower half around and being in a chair. I would be truly happy if I completely severed my spinal cord even with the toilet problems and loss of sexual function.
@Ken: Thank you for your comment. I am glad you were able to adjust to your injury. I am there with you, I don’t think Steve knows what he is asking for. My impression is that he has some kind of morbid curiosity without even coming close to see the whole picture. That said, yes, there are people, transabled people who feel a need to be paralysed without really wanting to be paralysed. They do not desire the loss of body functions for its own sake but for finding a peace of mind. It’s a bizarre condition and they are fully aware of that. They would prefer not to have those feelings yet those feeling were present since they were kids and no amount of medicine or psychotherapy helps them not to feel the need to have a physical impairment.
@Steve: Do you know what causes this want? Is there sexual motivation in it? Does the thought of not-feeling arouses you? Or are you curious about many things and this is one of them? It sounds to me that you have a very limited and idealised idea of paraplegia. First, complete paraplegia is fairly rare. Second, nappy is usually not a solution to paraplegic incontinence. Thirdly, bowel movement is usually controlled with a daily regiment and not diaper soiling. And what about all the complications of paraplegia? You know, not being able to walk is the “minor” problem for paras. Apart from bladder control, there are skin issues, UTI and many other things I am not aware of. Have you considered all those? If you are really looking for experiencing the feeling of non-feeling, epidural would do the trick without lasting damage.
If you’d like to continue this discussion, I would recommend to take it to the forum as there would be more space and participation available.
it might be possible to experiment with temporary paralysis by some type of acupuncture.my wife has one hip bigger than the other and so sometimes the S3 vertabrae pokes into the spine causing her leg to go numb
Good afternoon! Hi Elizabeth. I will go to the forum when I get my computer fixed, can’t access everything from my phone! I’m not really sure where my strange desire comes from but I have wanted this since childhood. Yes I do feel aroused by the thought of not being able to feel anything (and if I get my wish I know I won’t get aroused anymore) although “normal” things arouse me too. Not being able to feel is the main attraction of being paralysed, closely followed by not being able to move and needing a chair and muscle atrophy. I want to feel as though I have been cut completely in half! I know my desire might be idealystic and I may well be disapointed by the reality. I would love to lose all sensation, movement and function everything! I know I will have to cath and have a bowel programme and the nappy, well i’d like to wear one at night and would love to touch the polythene with my hands. I know i’ll get nappy rash and pressure sores and get infections from cathing and wearing a nappy and i’ll not feel when I need to go. I know my skin will break down and i’ll never get another errection and there would be no more sex. A stylish Quickie or colours chair and permanent paralysis and i’d be happy!
David became an incomplete Quad at 13, he is now 46. he has limited use of his left hand, no use of his right and now (since 05) has became a bilateral above knee amputee. He has not been in his chair for nearly 2 years, becoming bed bound – and had given up the will to live, until here recently. Now he wants to live, not give up and us to share our lives together!!
. We want to get him up, but common sense tells us he will need special adaptations to his chair, any suggestions? Any possible way of him now being fitted with prostetic/robotic legs?
@angie i saw on cnn a women who lost her right hand and she got a semi robotic prostetic hand and she can type 45 words a minute.contact company’s that make prostetics they will sometimes donate or help with payment in special cases
angie
Some maybe stupid sounding questions but follow along
are you David’s mother/spouse/significant other/girl friend???
could David walk before he became an amputee?
Very honest if he couldn’t walk before the odds of him walking now is close to nil, prosthetics are good but they’re not that good.
It sounds like he needs to see a physiatrist (not a psychiatrist) it is a doctor who is specially trained in rehab medicine and could best advise you and him of what would work best. Would also be able to coordinate any other docs that might be needed.
He will probably do best with a power wheelchair and a fair amount of PT and OT to get back into shape.
Some websites he might find interesting include
http://www.adapt.org
http://www.pnnews.com
http://www.notdeadyet.org
Follow some of the links depending on where you are located and what kind of insurance he has as to what may actually be available to him.
good luck and keep us informed
B
Has anyone tried botox to the legs? I’m getting desperate now. desire is strictly leg paralysis.
would take a LOT of Botox and a very careful application. I know someone who uses it for leg spasms and it does work but. Botox is a poison and has to be used very carefully. the results last about 6 months and are not reversable.
Bob
gimp is a funny conotation vis:if one gimp calls another gimp a gimp thats ok BUT if an a.b. calls one of us a gimp there could be bloodshed ,or he could just get run over by a gimp in a wheelchair,its the same idea as the term cracker,mik,kiwi’s(White folks,the Irish or New Zelanders,respectivly)think it over for a while,you might reconsider your previous thoughts on usage of the term
@James: I will gladly change the usage of the term when Mark Zupan will. I have used the term just once in the post, in connection to Mark, not to any other wheeler. As Mark himself uses the term for himself, I strongly believe that in that context it is OK to use. But I also understand that there will be people offended by the term and that is OK.
See, there is no consensus in the disability community itself on what is appropriate and what is not. The community is diverse. Some people will always be politically correct (PC) and they will be very careful not to offend anybody. I am not PC. I make people uncomfortable.
Some wheelers believe that in most cases it is not OK to offer help to a wheeler. Some wheelers are always grateful for the offered help.
Some people don’t believe in disability humour and consider it inappropriate. Some will laugh very hard at John Callahan’s jokes.
We are a diverse community and that is a beauty of it. So I will respectfully disagree with you. 🙂
I use a wheelchair or crutches because of arthritis and bursitis. Standing and walking can be extremely painful, so any time I think I may have to walk more than a very short distance, it’s the chair for me. I don’t give a rats a** what the next person calls it, whether it’s ‘gimp’ or ‘cripple’ or whatever. I would greatly prefer that people just say what they mean, rather than go to great lengths to try not to offend. I am quite well aware that my hips are not ever going to be 100% ever again, and I just despise all the politically correct nonsense that people use to try to avoid the remotest possibility the someone, somewhere might possibly take some enormous offense. The only thing worse are the idiots who seem to become offended way out of proportion to whatever offending remark, as they are the ones who perpetuate this b. s. There’s my little rant for the day.
to a point but names can hurt and names can have an effect. and I believe a person is best called what they want to be called.
there is a big difference between me naming myself and you naming me. Jerry Lewis is a prime example of names hurting people. he spends all labor day weekend calling us children, then on Tue morning I show up trying to get a job….. who will even look at you as an adult much less an intelligent and competent adult after listening to someone hour after hour call you a child.
yes names can and do hurt.
it is not “politicallly correct” the proper term is “respect”
Bob
I just wrote a post about politically correct vs. people first language as there is quite a difference there.
Just the thought of Jerry Lewis makes me sick. Or should I say the thought of him causes me some discomfort?
Apologies! I realise that my posts on here have been repetitive and monotonous. I do sincerely apologise for being boring and/or causing any anger or annoyance to anyone. I haven’t been well over the past few months, from time to time I suffer with depression as well as ocd. Bizarrely as I descend into depression I become obsessed with being paralysed and I mean completely obsessed along with a couple of other things. It takes a while for me to admit that the depression warning signs are there but once acknowledged its a trip to the doctors and back on medication. Citalopram truly rectifies the depression and also removes the desire to be paralysed, not 100% but it certainly isn’t an obsession whilst I take the meds.
I’m also acutely aware that when i’m wishing that it is wholly unrealistic and a desire created by an unbalanced mind. The reality if I did have an sci would nothing like what I have wished for and after a few minutes of omg wow i’d have a lifetime of regret, agony both physical and mental along with intolerable frustration. The question I ask myself is…. Who in their right mind would want to be para?? And the answer is not me!
I have been obsessed with wheelchairs and paraplegia since I was quite young. I believe this came about due to the fact that when I was a small child I lived with my mother, grandfather and disabled grandmother. My grandmother had MS and was a wheelchair user. I am not sure quite sure how I became obsessed with disability but I do remember playing at being disabled and sitting in my grandmother’s wheelchair when I was little. Since my early teens ( I am now 57) I have also been a crossdresser and enjoy wearing the clothes of a mature lady from the 50s and 60s. I have a particular love of vintage underwear and adore wearing girdles, longline bras and corselettes. Most of my sexual fantasies involve the thought of me being a disabled woman who is confined to a wheelchair. Being disabled has always had a sexual element for me. I think it is the thought of being helpless without a wheelchair that is so appealing. If I had the chance I would spend most of my time dressed as Margaret in a chair. I get really obsessed about this at times. I don’t know about feeling numb. I would want some sensation but do like thought of being completely incontinent and wearing a legbag and/or nappy. The combination of being crossdressed and in a wheelchair would just be pure heaven for me. Does anyone wish to comment?
i have gone from being able bodied to being a full time wheelchair user n believe me its not the same as being able to go out and do things-;
1 I cant go dancing or night clubbing any more
2 alcohol is out, so where’s the fun in going out
3 friends do not visit as much
4 women look once the look away
5 people in general see the wheelchair before they see the person
6 energy is low on most grounds except flat ground
7 theme parks are out as most don’t allow wheelchair users due to insurance propaganda
8 there’s never anyone there to aide you when you need it most, ie Raising my garden beds is going to take a couple of years
9 you often hear that most wheelchair users have to rely on others to aide them where ever they go but why is it that they person taking care of the wheelchair user decides to make the day out something they want to do rather than that of the wheelchair user
10 last til best – independence has grown wings and fecked off for good, how can you be independent when you have to rely on others to get stuff off shelves, go out and do what you want whenever you want, its all improperly designed there’s no way any disabled person can do some things without the need for help
if you ask me getting called names is just another way of people trying to take the piss, but if you look at nippers they look at you with eyes that tell a different story… So what are the advantages of being disabled (NONE AT ALL), i would love to be able to walk yet i have got to use a fecking wheelchair to get around and why don’t people that see the wheelchair try it for a year , see how the feck you can cope it aint easy knowing the hill is too steep, the lift aint working so you have to do without, e.t.c
Being disabled in a wheelchair aint no where near as good as being able to walk on yer own 2 legs, then there’s medications, its just so unfair for others to make the rules and regulations of how wheelchair users should live… if this fella wants to call himself a gimp then so be it but he must be nuts as most others will call him other names to boot as well, personally if you cannot call me by name then use your manners and state ‘excuse me’ that way I can see what it is your afta and so can others too…
thanks
Dear Mark,
I am sorry that you feel life is treating you badly. Life is not fair, that’s for sure. Yet all we have is the life we are given so we either move on or we become bitter.
I am not sure what is your condition that you can’t go out by yourself. The paraplegics and amputees I know are independent. Though independent is such a silly word. You say you are not independent because you can’t reach the high shelf. But even if you could, would you still be independent? You are still dependent on the people who grew the food, packaged it, shipped it to the store, the list is too long. It’s called interdependency, none of us is independent, just some are more, some are less.
Many of us “able-bodied” use a wheelchair. I personally used a wheelchair for about 90% of my outings, including shopping, for 15 months. I didn’t change my social life at all. Yes, I didn’t have issues with my plumbing. But otherwise I had the same issues, same looks as an everyday wheeler. My experience was that the more comfortable I was as a wheelchair user, the more comfortable others were with me. When people see that you yourself are comfortable and at peace with who you are, they quickly forget the chair and see beyond. There will always be stupid people around, no matter what and it sucks. But one can live a good and happy life even as a wheeler. Don’t forget, there are plenty miserable able-bodied people out there. It might be a cliche but it is true: attitude is what will make all the difference in your life. The only life you’ve got.
ok mark don’t know how long you’ve been disabled, but as a vet who has had a spinal cord injury for over 40 years. It isn’t perfect but can be a very fulfilling life, have wife, have children, have grand children, am ski instructor, and fly a hand controled aircraft.
still can’t get stuff off top shelf, but don’t put anything up there I want, is my wifes shelf. in store I get long item as soon as I go in and knock stuff off top shelf and catch or grab store clerk to get it.
biggest problem, keeping the (*#&!@*! lazy folks out of the accessible parking spaces. hang in there, it does get better.
just got back from long business trip, yes I went to college and got good degree and job I love…about only thing I can’t do is walk…. and walking is overrated.
now go have a life.
Bob
Amen to all of that, Bob!
Has anyone tried botox to the legs? I’m getting desperate now. desire is strictly leg paralysis.
The same question!
@ sandu yes botox can be in the legs
yes can it cause lost function forever(im living proof of that thanks to an under educated orthopedic surgeon)
Oh and im hemiplegic cerebral palsy
Hi! I just happened to come across this website & I find it fascinating, especially the comments. I’m a wheelchair user; been one all my life. I’m not a para, but I can’t walk at all. And you know what? I’m having an awesome life! In fact, I consider myself very lucky for being born like this. Because I didn’t have to give up anything. I don’t really know what I’m missing. And if scientists came up with a cure for my diability, I don’t know if I’d take it or not.
Okay, I just wanted to share. 🙂
Hi, I feel that I’d like to be paralyzed from the waist area down due to having horrible, chronic pelvic pain. No one can seem to figure out the cause of it, although I do have lyme disease, so that could be the culprit. It’s been a horrible journey of trying to get the pain to stop! I look able bodied, but I am in constant pain and spend most of my time in bed because the pain is so incapacitating. I have joint pain from lyme as well, but the pelvic pain is the most constant. It just hurts so badly! I am also sooooooo weak and fatigued all the time. I’ve had a couple of surgeries, have tried special diets, and am on 2 kinds of antibiotics (to fight the lyme.) Still, I’m just miserable and basically housebound. Walking for any distance causes the pain to be worse and I’ll pay for it for a week or more sometimes. I am actually getting a cheap wheelchair in hopes that I can begin to come along on family outings again. I just wonder, if the signals could be cut above the area of my intense pain, would the internal pain stop? I feel that I could be SO much more active from a wheelchair without pain than I am now, able to walk but with constant, awful pain. I am on heavy painkillers to try and survive the pain, and I want to be off of them SO badly. I just want the whole pelvic area to be numb, so badly. I would give up walking in an instant for that. I doubt that any doctor would do this for me, (sever my spinal cord to stop the pain) but I can’t help but wonder. I also wonder if it would be successful?
one thing to remember pain does not always come from the area that it feels like it comes from, amputees will tell you all about phantom pain and paras and quads have pain in areas that they cannot feel, my ankle itches all the time but has no sensation. so before you do something make sure it will actually solve your problem otherwise you may be spinal cord injured and feel nothing and all the other issues that come with thatt and not cure the pain problem.
see a pain speccialist if you have not already.
Bob
Disability, Love, Sex … and Jobs: A Novel Perspective
“Lovers Lame is the novel that makes disability sexy,” quips Bob Rudney, the author and long-time disability advocate who’s just published his first fiction work (Booklocker, $16.95, paperback, $8.99 electronic, http://booklocker.com/books/6101.html). “The book’s also a conscious effort to raise public awareness on disability issues, especially employment, and to expand the audience,” he adds.
In Lovers Lame, narrator David Levin’s lonely and tightly controlled world turns upside down when he wanders into a self-help group for job seekers with disabilities. David, an acerbic, out-of work editor with left-side paralysis, grudgingly befriends a motley group of self-styled ‘crips’ and becomes infatuated with Jessica Cowan, an alluring, but mercurial artist battling the debilitating effects of multiple sclerosis.
David falls hopelessly in love, while Jessica insists on maintaining her distance as she comes to grips with her own tempestuous past. Their struggle with their own inner demons plays out against the backdrop of people with disabilities fighting prejudice and ignorance in a world that still excludes them.
“It’s both a plea for social and economic justice, as well as a poignant love story,” says Bob, who’s retiring as a Senior Advisor in the Defense Department. “Only one in five Americans with disabilities is employed. That’s unacceptable. The characters in the novel confront this bleak reality. They also face all the extra hurdles of forming personal relationships, of looking for love, while burdened with a disability. Lovers Lame shows them as human beings, not as poster children.”
The loving relationship between Christy and Jonathan, two individuals in wheelchairs, transcends their disabilities, societal norms, a serious accident, and pig-headed parents. With a little help from a sympathetic personal assistant, they achieve sexual fulfillment. “They are the lucky ones, but they are fictional,” Bob observes. “So many real-life men and women with disabilities never know true romantic love, true sexual attraction. The odds are stacked against them.”
Bob was recipient of a 2008 Kennedy Foundation Congressional Fellowship and won the 2011 Defense Department Award as ‘Outstanding Employee with a Disability.’ He was Co-Chair of the Booz Allen Hamilton Disability Forum and served on the Virginia Business Leadership Network Board. He is available for presentations, interviews and other media events. Further information can be obtained from robert.rudney@gmail.com.
This article explains Steves desire to be in a wheelchair:
http://about-brains.com/when-the-brain-refuses-ownership-of-a-limb/
I am working on developing a new wheelchair design and need people to take this survey to help me determine the correct features to include in the design. Here is the link! THANK you to everyone!!
http://www.surveymonkey.com/s/H6JDF2H
I have just gotten a chair. I am having a hell of a time on the street with it. is there any advice you can give me to help with this. I have 4 young kids and have been unable to get out for months due to my back degenerating, so when I got the chair they where all excited that I could go and meet them at school. The school is a 10 min walk but it took me 45 min to get there and a hand full of blisters. I really want my freedom back and am looking for any advice you can give me to help me get on better with the chair as it is going to be a permanent fixture in my life from now on.
Justine:
I hope you don’t mind that I’ve made a personal response to your message. I also have spinal degeneration, so welcome aboard the same boat!
Goodness- how do I begin this? Despite the freedom that a wheelchair will present for those of us who can’t walk very far, it’s still a major hassle and at times a truly royal pain in the butt to deal with. You have my sympathy, and I hope I can help.
The best advice I can give you is this: get out and roll! You will develop some muscles after a short while. What helped me greatly is that there is a park nearby with a large circular track. I just got out and gave me and my go-kart a good long run. Bring an iPod! Also, check out a shopping mall that offers “mall walking” to get a good run (but don’t run over the “walkies” while you do so…). After a while, the walk that normally takes 10 minutes on foot will take 5 minutes by wheel. Believe me- you should see me at the grocery store!
Uphill ramps will always take a lot of strength, and tilted sidewalks will either strengthen one arm or roll you out into the street. Large cracks or uneven sidewalk joints may also require that you “wheelie” your front wheels over them. Again, practice is key, and have a spotter behind you so you don’t flip backward on your first few attempts (very embarrasing…).
Look for some videos on YouTube.com that will show you some essential tricks and how to execute them. Just enter “wheelchair skills”, “wheelchair practice”, “wheelchair tricks” or any similar query into the search box- you’ll find hours of video to watch, and after a while of trying them on your own you’ll become a pro.
As far as the blisters go, the easiest thing to do to prevent this is to go to a sporting goods store and get a pair of open-fingered weightlifting gloves. You will get a better grip on your handrims as well as have a lot more comfort. They’re not very attractive, but sometimes practicality has to predominate over fashion sense. I shop at SportAid quite frequently, and they have a good selection of gloves specifically for wheelchair users. I prefer the open-finger type with fully enclosed thumbs since I’ve torn thumbnails off by jamming them into the brakes.
So then, this is your first wheelchair? A lot also depends on the type of wheelchair you have- and there’s a wide variety of them. Even the kind of tires you have will make a difference. I have a TiLite ZRa, it’s a “Z” frame rigid titanium- lightweight, fast, and easy to manoeuver. It’s a whole world away from those huge clunkers you see at the hospital or offered as a courtesy at WalMart. TiLite has a great reputation, personally I would rank it as the best available, but also consider a Quickie- they’re reasonably close, and many of us in the forums on this site will say that either are exceptional. Visit the TiLite website, there is also a TiLite outlet on eBay for customer returns and demo chairs. These lightweight wheelchairs offer this important advantage: more of your energy goes into propulsion of yourself, and less into propelling a massive heavy chair.
Wishing you the best of luck,
Mark Comer
Steve’s sounds similar to a case of BIID in the form of feeling a “need” to be paralyzed.
Sometimes I feel a need to be in a cast, a wheelchair, or crutches. Tell me Why??? that happens.
I need to find more information on people like me who are not wheelchair bound but use a wheelchair.
I became disabled 23 years ago resulting in a lack of ability to walk very far. However, I took up cycling and cycled fairly long distances and Canadian canoeing long distances but I am 23 years older now and find myself on a walking stick or crutches permanently and to enjoy days out with my family at a park for example I require a wheelchair. I am struggling with this at times and subsequently miss out on good times with my family. I need to read more information on people who are not wheelchair bound but use a wheelchair. PLEASE ADVISE, Shane uk
Shane, thank you for your message. The forum might be helpful for answering your questions too. Have you read this article? http://www.bbc.co.uk/blogs/ouch/2007/08/the_wheelchair_choice_1.html It talks about the necessity to see different mobility aids just as that – aids. Helping one with what is necesary at that moment. That means that sometimes one uses crutches and sometimes a wheelchair. The article points out (well, I am concluding this from the article) that if we free ourselves from labeling ourselves as “wheelchair users” or “crutch users” and just do what needs to be done to make us most mobile and comfortable at that moment, no matter what the world thinks, so we can enjoy our life more. Sometimes I like to liken the different use of mobility aids to our everyday life – I walk sometimes. Most of the time I use a car because the destination is too far. Sometimes I even need to take a plane. I don’t feel like a loser that I didn’t walk those two miles to the store even though I guess I could but it is my choice not to. If you frame your wheelchair use as the most reasonable choice for the given situation, a choice that will make you most mobile, then you will free your mind as well. Also, people will mirror how comfortable you are with yourself – I can imagine you have plenty of experience with that. Most people are little bit uncomfortable with others who are “different” at the beginning but when they see that you are all right with yourselvf, they will be too.
ahiruzone
Thank you for pointing me in that direction it really is inspiring, I am sure I will refer back to it many times. A choice thing and its my choice, my wife and I like that idea very much.
I can’t say anything else but “Thank You.”
You are more than welcome. Glad I was able to shed some light on it. That article was a total eye opener for me.
Hello,
My name’s Camilla and I work at a documentary company called Mentorn. I’m conducting initial research into a film for Channel 4 on Body Identity Integrity Disorder. I really enjoyed reading your post and I would be very interested to speak to you in confidence about your experiences and your hopes for the future.
Mentorn is a multi award winning television production company that produces high-end documentaries for all major UK and US broadcasters including the BBC, Channel 4, Discovery and National Geographic. We are extremely experienced in working with individuals in highly sensitive circumstances, our content is always driven by our integrity and is built through truly collaborative documentary partnerships. We intend to avoid it be a sensationalist documentary and we intend to focus on the neurological aspects of BIID as well as the ethical arguments that tie in with the topic. At this initial stage we are looking to talk with as many of those with BIID as possible to build up a full and honest sense of the condition.
We absolutely appreciate that many of those with BIID value their anonymity. At this stage therefore we are not looking for people to appear on camera, only to talk with us about their lives and experiences. Any initial conversation will be in the strictest confidence, and there will be no obligation at all to appear on film.
If you would like to know more about our project or are happy to help us, please email me on CArnold@mentorn.tv or call me on 02072586717.
Thanks so much for reading, and I do hope to hear from you soon.
Interesting read, many reasons for people to use a wheelchair, shouldn’t assume someones disability. I know someone with MS who is currently using a stick, but later on will no doubt be in a wheelchair, but holding off as long as possible until she reaches that stage. Everyone treats the situation to a wheelchair differently.
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tbh because I’ve been in a wheelchair most of my life people joking and fooling around doesn’t bother. But I personally have a thing against being called a “Gimp.” It makes me feel as if they use that particular term to intimidate people in wheelchairs (this only applies to bullies and other issues as such) It does a little but it’s not as bad once you get used to it. Being crippled doesn’t make me stupid, helpless, or weak. In fact I’m none of the above. I am the complete opposite: Intelligent, Independent, and strong.
I’ve been in a wheelchair my entire life, so regardless of the reason as to why someone uses a wheelchair, I respect whatever their situation may be. No my place to judge. I do enjoy hearing different perspectives however from different wheelchair users. I myself have a blog sharing my opinions and stories on being in this awesome position. Cripple Please is the blog. Please check it out and let me know what you think.
if any person who is in a wheel and likes to travel you should get a wheelchair trailer
it will come in handy
Hi! I would like to share this great online resource for anyone seeking a wheelchair: http://www.medicalexpo.com/medical-manufacturer/wheelchair-2081.html
All people in wheelchairs are Spastics and Gimps, they leech off of society and are a menance to normal humans
@Brian Bowers: Compassion and mercy are two things that separate humans from the rest of the animal kingdom. So where does that leave you?
And it is fortunate for Brian that most of us have compassion for those who are intellectually disabled.
These post for the most part seem so unrealistic. Being disabled is a joy? From able bodied people its ludicrous. Then there’s the super achievers with disabilities but excellent support and often financial superiority. I was shocked at the response that paras and others lives aren’t dependent or difficult. A few examples. Money if you can afford a home with wide doors,open spaces, low counters +shelves proper bathroom design. Mobility devices to transfer alone or with little help. And many other things depending on your lifestyle and hobbies. It is completely different then the poor who can’t rely on all those advantages to make their lives easier or even many things just possibilities.
Another example is side walks ,streets and even malls and grocery stores. There is a huge variance in accessibility between a narrow heaved sidewalk with missing squares typical of older “poor” neighborhoods and more rural areas. There’s the joy of wheeling through a new modern store with wide uncluttered isles and squeezing through narrow isles towering precariously above you and being boxed in by poorly placed displays. Frantically wearing yourself out searching for a adequate public restroom. Consider the logistics of moving for someone bound to a wheel chair? You CNT afford movers and aren’t financially able to replace items your unable to move yourself.
And don’t bring up insurance or public services. They are no more created equal then humans are.
What I am saying is this I suppose there’s a huge range of experiences between the person able to move to a chair roll unobstructed into a bathroom built to accommodate them and then rolling out to a kitchen they Are able to fully utilize then out the door down a real ramp to either specialized vehicles or wide open side walks. To the person struggling in a narrow or uneven arrangement with out transfer assistance then fighting into a restroom to perform extreme gymnastics just to utilize the facilities . Then making do with whatever other inconvences their home produces before launching themselves out the door and down the step into mud or soft dirt. Before their day has really even began.
To tell people in these situations they shouldn’t be bitter or disappointed and to get on with their lives like you are able to is at the very least Ill informed.
And to any that are willing I am absolutely willing to share my circumstances and home with any wheel chair user. While we may be getting on with life it won’t include flying lessons or any great freedom/free time.
As for being dependant on farmers for food . Really? That’s a service they are reimbursed for. Not their good will . Now begging someone to hand you a item and being DEPENDANT on their good will that’s dependence. Assuming all Americans with similar disabilities have the same opportunities and resources is doing those that do not a huge disservice.
Hello, I have friend who use an electric wheelchair, but some of the buttons on the controller are failing. When I look under the buttons, there is a material under each button (like solid gel) that help to press the circuit under it and make it work. Well, this “gel” is almost missing andwith the time, you need to press harder and harder to make the button works.
We live in a small town in Mexico and is not easy to find especialized service or repair. Do you know HOW can I repair myself this problem? the wheelchair is working perfectly, is only a problem with the “gel” under the buttons. I am thinking using similar materials like rubber or something similar, any ideas?
Sorry I posted in here, but I can’t register at the forum.