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?
@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, 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!
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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.