This is my own, personal story of my disability and how I have chosen to manage it. My thoughts and choices are in no way a
judgement on anyone else's thoughts and choices.
I acquired my painful hip condition in my mid-20s, just after I
had started as an undergrad at uni (I was a “mature” student,
after failing school and going out to work instead), and started using a wheelchair after about six months of increasing pain and decreasing mobility (I was trying to keep going with my studies). I went through a
lot of specialists (you name it, I've probably seen one), only to
have no-one able to come up with a specific diagnosis for me. I have
lots of weird stuff showing up on MRIs, bone scans, blood tests and
x-rays, but nothing that can be put together and conveniently
labelled. I was eventually referred to a rheumatologist, someone who
specialises in joint issues.
I saw the Professor Rhuematologist, and in our first meeting he angered me by saying that he thought my disability was a lifestyle choice, based on the fact that I didn't have a diagnosis, and that I was “too young to be in a wheelchair”. He said that I must have chosen this way of life, and to use a wheelchair, and I could therefore just as easily un-choose it. (He's also the one that tells me I'm fat, and if I lost weight my mobility problems would be solved. He forgets that I was underweight when we first met.)
He wanted to try me on lots of different drugs, and when I initially resisted (I'd already been on lots of different drugs, including one that affected me so badly I nearly crashed my car on the way to my Final Shakespeare exam, and nearly cost me my degree), he took that as proof that I didn't want to be “cured”. So I have tried lots of different things, with lots of nasty side-effects, but the only thing that's helped me is a blood pressure medication that's improved the circulation in my legs and feet (I no longer get cold, purple feet!).
Despite the Professor's opinion, I haven't chosen to have a disability; this was further confirmed by the psychiatrist that the Professor referred me to. However, what I did choose was to use a wheelchair in order to get around (I simply couldn't walk far enough otherwise); that was a lifestyle choice. I chose to be able to leave the house, return to work and to university, and try to take up my life again, as much as I could.
I could just as easily chosen to not use a wheelchair, and stayed home. However, I would have been dependent on family, and/or carers and various services that I don't currently access. I wouldn't have got my degree, or returned to work, although I suppose I might have found some home-based work to do, so long as it didn't require my leaving the house.
As it happens, that never occurred to me; using a wheelchair seemed the obvious and logical choice. Without it, stuck at home, I would have have been bored senseless, and there's a good chance I would have decided that my life wasn't worth living. Not because I had a disability, but because I wasn't doing anything with myself.
I remember when I got my first MASS*-funded wheelchair, and was told that it was provided for me for use inside the home only. Of course, I didn't just stay home, and have used my wheelchair out of the house, despite the terms of the funding; in my particular case I generally only use my wheelchair outside of home, as I don't usually need it inside. It's why I hesitate to go through MASS again for another chair, as it makes no sense to me to make a mobility aid available to people who need it, but then confine them to their homes. Especially when the government is stripping disability pensions from people and telling them to go out to work.
Wheelchairs are great; it's the disability that makes the wheelchair necessary that isn't great (at all). To me, choosing to use a wheelchair is a positive, constructive choice. Yes, there are plenty of frustrations associated with being a wheelchair-user, not least of which is not being given credit for being an intelligent, educated, independent human being (Yes, I live alone (with my cat and my dog). Yes, I drive! Yes, I am studying to be a high school teacher!! Even though I use a wheelchair.). Not being able to access some part of the the community is also annoying, but it's better than not being able to get out at all (I sometimes forget this, though, in my frustration at not being able to get where I want to go).
Having a disability is really crap, but it would be much, much crappier if I didn't have a wheelchair.
PS.: I now only visit the Rheumatology department once a year, and if I'm lucky, I see one of his Registrars, rather than the man himself.
*Medical Aids Subsidy Scheme
I acquired my painful hip condition in my mid-20s, just after I
had started as an undergrad at uni (I was a “mature” student,
after failing school and going out to work instead), and started using a wheelchair after about six months of increasing pain and decreasing mobility (I was trying to keep going with my studies). I went through a
lot of specialists (you name it, I've probably seen one), only to
have no-one able to come up with a specific diagnosis for me. I have
lots of weird stuff showing up on MRIs, bone scans, blood tests and
x-rays, but nothing that can be put together and conveniently
labelled. I was eventually referred to a rheumatologist, someone who
specialises in joint issues.I saw the Professor Rhuematologist, and in our first meeting he angered me by saying that he thought my disability was a lifestyle choice, based on the fact that I didn't have a diagnosis, and that I was “too young to be in a wheelchair”. He said that I must have chosen this way of life, and to use a wheelchair, and I could therefore just as easily un-choose it. (He's also the one that tells me I'm fat, and if I lost weight my mobility problems would be solved. He forgets that I was underweight when we first met.)
He wanted to try me on lots of different drugs, and when I initially resisted (I'd already been on lots of different drugs, including one that affected me so badly I nearly crashed my car on the way to my Final Shakespeare exam, and nearly cost me my degree), he took that as proof that I didn't want to be “cured”. So I have tried lots of different things, with lots of nasty side-effects, but the only thing that's helped me is a blood pressure medication that's improved the circulation in my legs and feet (I no longer get cold, purple feet!).
Despite the Professor's opinion, I haven't chosen to have a disability; this was further confirmed by the psychiatrist that the Professor referred me to. However, what I did choose was to use a wheelchair in order to get around (I simply couldn't walk far enough otherwise); that was a lifestyle choice. I chose to be able to leave the house, return to work and to university, and try to take up my life again, as much as I could.
I could just as easily chosen to not use a wheelchair, and stayed home. However, I would have been dependent on family, and/or carers and various services that I don't currently access. I wouldn't have got my degree, or returned to work, although I suppose I might have found some home-based work to do, so long as it didn't require my leaving the house.
As it happens, that never occurred to me; using a wheelchair seemed the obvious and logical choice. Without it, stuck at home, I would have have been bored senseless, and there's a good chance I would have decided that my life wasn't worth living. Not because I had a disability, but because I wasn't doing anything with myself.
I remember when I got my first MASS*-funded wheelchair, and was told that it was provided for me for use inside the home only. Of course, I didn't just stay home, and have used my wheelchair out of the house, despite the terms of the funding; in my particular case I generally only use my wheelchair outside of home, as I don't usually need it inside. It's why I hesitate to go through MASS again for another chair, as it makes no sense to me to make a mobility aid available to people who need it, but then confine them to their homes. Especially when the government is stripping disability pensions from people and telling them to go out to work.
Wheelchairs are great; it's the disability that makes the wheelchair necessary that isn't great (at all). To me, choosing to use a wheelchair is a positive, constructive choice. Yes, there are plenty of frustrations associated with being a wheelchair-user, not least of which is not being given credit for being an intelligent, educated, independent human being (Yes, I live alone (with my cat and my dog). Yes, I drive! Yes, I am studying to be a high school teacher!! Even though I use a wheelchair.). Not being able to access some part of the the community is also annoying, but it's better than not being able to get out at all (I sometimes forget this, though, in my frustration at not being able to get where I want to go).
Having a disability is really crap, but it would be much, much crappier if I didn't have a wheelchair.
PS.: I now only visit the Rheumatology department once a year, and if I'm lucky, I see one of his Registrars, rather than the man himself.
*Medical Aids Subsidy Scheme
What did the british docs say? You had operations over here.
ReplyDeleteThe British ones were pretty similar to the Australian ones. Once a specialist decided there was nothing he could do for me, he passed me onto the next specialist.
ReplyDelete