Access by Various artists

A sight I'd always enjoy at the Big Day Out was young people in wheelchairs with their mates, dancing in the Boiler Room. It struck me that being off yer chops and wheelchair-dancing looked like a lot of fun.

Oh, it is! I do miss it. Sadly, I'm much better behaved these days.

When I saw the link I thought this would be about commuting & public transport and such, but it was so much better than that. Thank you.

I still don't have a good way to describe people who are basically healthy and robust, but in a wheelchair. Because those are the people who seem to go out and have fun, and are fun to do stuff with. But fun I mean the stupid stuff that teenagers do, like dragging a guy in a wheelchair up Mt Arthur (because it was there, obviously). I still think he could have gone waterskiing, but the adults involved disagreed.

And then there's Sean, who likes to go cycle touring with a wheelchair Cycle touring is the arachnid's elbows.

I've hung out with other people in wheelchairs who are much sicker, and basically can't do vigorous exercise at all. Which is less fun, for me anyway, because a lot of what I do revolves around exercise. They don't do that so much. Except sex, apparently, because that never gets old.

Oh, thanks. That's very nice of you to say.

Thanks for your comment, Moz. I had very few health concerns until 10 years ago. In that time I did pack in a lot of 'fun'. However, due to deteriorating health, I'm not quite as physically able or, on the whole, as well as I once was so I have had to broaden my definition of fun, which is not such a bad thing.

Fun means different things to different people, too.

Fun means different things to different people, too.

Oh, very much so. I'm quite aware that I'm excluding a lot of potential friends by saying "no ride bike, no Moz for you". I'm also trying to be clear that this is all about me, and I'm not denying that other people have fun in other ways.

I do understand. It wasn't meant to be a criticism, by the way. Apologies if it came across that way. I just meant to say that I've experienced life as a very active person with a disability and also, later, as a person who lives with chronic illness and isn't quite as able.

I think it's an important distinction to make. People with physical disabilities who have to deal with chronic illness can be isolated in a way that healthy individuals might not be. Particularly when it comes to recreation, we can feel really quite limited.

While I'm not quite as fit and able as I was, I'm looking at getting a wheelchair cycle myself and I think that is going to be loads of fun and will help my mobility. I'm so looking forward to it!

I'm looking at getting a wheelchair cycle myself

If you can afford it for the love of all that's sane, get a tadpole recumbent trike with arm-power, rather than the usual crappy delta (like Sean had). Those are unstable at any speed, but unfortunately the muppets who make them are "mobility aid makers" rather than people who understand anything about vehicle design. Greenspeed and Trisled in Oz will do them IIRC (contact me if you're having trouble and I can prod TriSled at least), the problem being that usually everyone has a sob story and wants more than their budget will get them, so they end up with a craptastic thing that puts them right off handcycles forever. It might sound odd if you're used to wheelchairs, but a handcycle that's not stable at 50kph is a dangerous joke. The point is they're supposed to be faster than a wheelchair, right? Not "just as unstable, just as slow, but use different muscles". Ahem. {/rant}

Particularly when it comes to recreation, we can feel really quite limited.

Yeah. I used to hang out occasionally with a woman who had MS as she ground down that ugly slope, and eventually even leaving the house was all a bit much. But for a while the local bi group was a big thing for her. We also had a bit of a working bee to round off the rough edges of the queer cafe that were unhelpful for some people ("bright" acoustics, a few small step up/down "bumps" between rooms, the iron-man strength door closing thing on the disabled toilet). You'd be amazed at how much you can fix in a rented commercial space if you ask (as a tenant, obviously). Also, queer groups and disabled people is a bigger crossover than I expected. Christchurch had a thriving deaf gay scene, for example. They really hated the bright shiny echoey "feature" the cafe had when we moved in.

I do wonder sometimes whether I am odd for noticing this stuff, or do other people see it and decide not to worry about it? Coz I'm going back through memories and there seem to be a lot of times I've met or hung out with disabled people and it hasn't really been a fuss. Or it has been, but it's been worked around (like getting ranted at by a friend about how disabled toilets often have round doorhandles and strong auto-closing mechanisms, making it very hard to get out of the room if you lack grip strength, arm strength, or the mobility to turn, pull and step while opening the door). So often it's the little questions that raise bigger ones (above: can you stand outside the toilet and open the door when I bang on it).

This was a most illuminating piece, Chelle (and very well-written, too). It's given me quite a bit to think about. Thank you!

I think it’s an important distinction to make. People with physical disabilities who have to deal with chronic illness can be isolated in a way that healthy individuals might not be. Particularly when it comes to recreation, we can feel really quite limited.

I get how alienating it can be when disability is presented as gorgeous, fit Paralympians. For me, it's that my boys face the more subtle, more pervasive challenge of having a very different experience of the world from the people who design the world.

Thanks, David. I appreciate you taking the time to read it.

You made me laugh, Stephen. Thank you. I too would like a tail so I could swing through the trees like a spider monkey. I would also like a spider monkey of my own. I would call him Maurice. Seriously though, thanks for reading:)

Your analogy that not being able to walk is like not being able to fly is obvious, but it opens my eyes to your experience, brilliantly.

Same.

It I interesting that the company that makes the bionic/robotic legs has not been the stand out (pun) success they anticipated. I have a friend with MS who seriously contemplated them (and could probably afford them but now has a chair that stands him up when he needs to, which suits his needs much better) and have seen them demonstrated enthusiastically by young fit paralympians. But they seem to be mainly promoted by those who assume everyone wants to walk, and feel uncomfortable about disability generally.

Thanks for your post on walking Chelle. It reminded me of the times when we would have a smoke and go out for a walk and i used to so enjoy cruising (especially down hills) in my chair while my mates, poor buggers, had to walk! It also reminded me of Mike Oliver's 1993 inaugural professorial lecture "Whats So Wonderful About Walking" (http://disability-studies.leeds.ac.uk/files/library/Oliver-PROFLEC.pdf). Twenty-one years on and it still speaks loudly to me, especially the final sections on rehabilitation and mobility aids for non-flyers.

I second Moz on the Greenspeed. We had a tandem recumbent. On one hill we regularly went down we had to brake at 80 km/hr so as not to break the speed limit. Magura disk brakes were awesome.

Hmmm - a harness for walking (90 sec clip)

A quick reply to those recommending recumbent cycles: I am going through the process of finding funders for a Top End Custom Excelerator Handcycle. I'm guessing it's probably exactly what I'm being warned against. Having spina bifida, I have an extreme level of scoliosis and a lot of pain that goes with it. I have tried properly recumbent cycles but the seating and set up is, for me, extremely uncomfortable and I feel so unstable due to a lack of trunk stability. I have tried the Top End cycle and I loved it. It was comfortable and easy for me to use. I appreciate the suggestions, though. Thanks.

I wouldn't dismiss this sort of thing out of hand. If the kids enjoy it - and it looks like they do - so long as they are comfortable and not in any pain, I don't mind. It's not like it's being touted really as a viable alternative to being in a wheelchair. It's just giving the kids a different experience. I should think there would be a number of physical health/fitness benefits involved, too.

My objection is more when any benefit is outweighed by the discomfort and pain the child has to endure. Also, it can give unrealistic expectations and shift focus from the wellbeing of the child to a singleminded notion that the child must walk to be whole.

A quick reply to those recommending recumbent cycles: I am going through the process of finding funders for a Top End Custom Excelerator Handcycle. I'm guessing it's probably exactly what I'm being warned against.

Yup. But as with all this stuff, having something that works for you is really important. Especially since you've tried the recumbent options - that's really what I was warning you about. Don't just go with what the people nearby are familiar with, because too often they don't have a broad idea of what's out there. It's like anything else, get an expert opinion, then get a second opinion from someone who disagrees with the first expert. Otherwise you're getting one expert opinion, twice.

Oliver-PROFLEC.pdf

Martin, your link doesn't work - here is a link to the pdf. Well worth reading - it is very entertaining.

Thanks for the link, Martin and Hilary, the piece is well worth reading and it's entertaining too.

Hi Chelle, I have just come across your post and couldn't agree more. I have always said it doesn't bother me that I can't walk. (I have Spina Bifida too) It's what I've grown up knowing. Like yourself I learned to walk when I was young. I can say that one of my proudest moments was walking out of Wilson Home (where I spent several days) on my crutches and cumbersome splints. Through shunt issues I lost the use of my right leg which was 'normal' and I lost the inclination to walk and found it much easier to be in a wheelchair. Especially as I was starting college, where I knew I wouldn't cope on crutches. Life changes and we have to be practical. I've had a fulfilling life, drive, live in my own home with my partner and work fulltime with a supportive workplace.