Monday, June 04, 2018

Personal / Political: Feeling a Little Lost

I've been taking our travels, and all the time I have in my new wheelchair, as an opportunity to practice my outdoor pushing. This means, for example, pushing from the parking spot to the hotel rather than being dropped off at the front door. It also means seeing a funky looking coffee shop across the street and instead of driving there, rolling over and back.

I admire wheelchair users who push themselves outside. I know the skill and the strength it takes. Sidewalks all being built angled, driveways at even steeper angles, pushing one wheel to propel and holding the other wheel so the chair doesn't do what gravity really wants it to do and plummet down the slope. I see other wheelchair users doing this such that it doesn't look like work. When I do it, it looks like work.

But I've set a goal for myself of pushing further and further outside. When in Vancouver, I'd like to do the sea wall. Joe and I used to walk there, and we always had the best conversations when we did so. I really want to do that again. I had thought it lost to me, but I'm figuring the wheelchair and stronger arms and more skill may have made that thought premature. So, I'm aiming to do that later this year.

I'm also fighting with myself over pledging to do a 5k outdoor marathon. I'm told the track is wheelchair friendly, I'm told that, for a 5k, it's a gentle one. I'm almost there with the decision but I want to wait until we're travelling a little less so Joe and I can go there and give it a shot, do a kilometer or two.

Someone asked me, another wheelchair user actually, what I was trying to prove by doing these things. I hadn't thought about these goals as political, only personal. I hadn't thought that these goals might be seen as critical of others with disabilities. Not at all. And I confess, I still can't see the issue. My goals are my goals and they are very personal and specific to me. I don't feel that I'm trying to prove anything to anyone but myself.

I've always been sedentary. Always. As a child. As a teen. As an adult. Disability or no, my tendency was to avoid physical activity. For some reason in the last couple of years that's changed and I enjoy feeling my body work hard. Part of this is because I figured that if I wanted to continue to travel and lecture, and I do, I had to increase my physical strength. I had to take the strain off of Joe and take it on myself - he has enough other stuff to carry and deal with. But mostly, I started, and enjoyed, the way working physically took my mind off my work and my worries.

So, now I'm wondering if I should even be writing about my adventures as a physical being pushing my own chair. I know my intent in talking about this is to document, for myself, and for those interested, my life as a disabled man - but does my privilege as a man who can push his own chair make me unable to see what my own posts are saying.

I don't know.


ABEhrhardt said...

Each person should keep their body in as good a shape as they can - subject to all the other constraints on their life. That just makes sense.

Exercise makes everything else in your body work better - if you can exercise. Those of us with ME/CFS have to find, by trial and error, how much we can do, because overdoing it will crash us for a lot longer than other people - and can actually lead to progressive deterioration. It is a difficult balance, and almost impossible to increase our fitness level; if we can, it is extremely slowly.

But if you can exercise, and recover, and repeat - until you find how much you can do - wonderful. It is only a commentary on yourself unless you go about telling everyone to exercise like you. Maybe they can't. Maybe they choose not to. I envy you.

Jenni said...

Before I got sick I was a gym person. It wasn't my whole life (fortunately) and I started reluctantly but found I quite enjoyed it. I got sick in 2013 - I've been assessed by the NHS (I'm in the UK) as having 25% of the energy of a well person. I spend most of my time lying down and for the rest I use a tilt-in-space power wheelchair. I am still making small changes (diet, supplements, routines, home automation) to improve my health and quality of life and have managed to return to part-time work, study and to build up to leaving the house 2-3 times a week.

When you write about your efforts to improve your health and quality of life, they don't upset me because you're able to do more than I can. I'm cheering you on! You don't have to pretend you're more disabled than you are, just so as not to 'offend' other people - no-one would say to a non-disabled person 'only blog about things someone with a severe disability could do, otherwise you'll upset people.' Grown adults are able to cope with the idea that different people are good at / can do different things, and that's OK. And to know that, if they feel offended by a blog, they can choose to not read it!

But yes, I think it is political to talk about the extra independence you've got from your exercise regime. That's because it's a political act to be a disabled person living in the non-disabled world who doesn't adopt the 'acceptable face' of disability for a non-disabled audience - compliant, subservient, non-threatening, non-sexual and grateful for the (s)craps other people deign to throw our way.

wheeliecrone said...

Fiddle-dee-dee, Dave.

I am happy to read whatever your posts. I can take whatever I need and want from your writing - and leave whatever I don't need or want.

It took me many years to learn this lesson, but I have been a much happier person ever since I learned it:

What other people think of me is none of my business.

Happy said...

I am a wheelchair user who is unable to self-propel due to ME/CFS. I confess that I feel some envy reading about your physical fitness achievements, but that's unhealthy. What I strive for is mudita, the feeling of joy in another's success.

You don't owe it to me, or to others who, like me, are unable (or unwilling or simply uninterested) to be wheelchair independent to suppress your own pleasure or pride in your accomplishments. This is your blog, and your voice. Don't silence yourself! You don't owe us anything.

Girl on wheels said...

I was pretty much stuck in my house (without assistance) for 5 years because I was only able to self-propel on entirely flat surfaces. And I worked as hard as I could to build muscle and strength, and that was still only enough for me to be able to manage wheeling outside some of the time. I was lucky that I was able to acquire the money to get power assist wheels and now I can go out whenever I want to, although I am struggling to break the headspace of being housebound.

Still when I started reading about your strength-building and the challenges you were able to meet, it never occurred to me that somehow that said anything about me. I was happy for you that you were gaining independence, but that doesn’t mean every single other wheelchair user is capable of doing that. Just like we’re not all capable of being the Paralympians, but that doesn’t mean those who are shouldn’t try to attain that. We all have different disabilities and those come with their own challenges and symptoms to manage, how on earth would we all be able to do the same things just because we get around on 4 wheels instead of 2 legs? So no I don’t think you writing about your experiences of getting stronger is somehow criticising those who aren’t doing that, just like you writing about all your travel isn’t being critical of those who don’t do that.

clairesmum said...

Your life, your blog, your words, your voice.
Humans seem to have some inborn reflex to compare self to others and to find words to 'other' someone who is different from that person's view of 'normal.' A trait that may have been evolutionarily essential but a true '"handicap' in modern life.

Keep on wheeling, Dave.

Kelly said...

You're writing about your experiences. That's often what bloggers do. I write about walking places with my service dog, because that's my experience. That fact that I walk, and write about it, is not criticizing those that cannot walk. Their experiences are their own, and my experiences are my own, and what else should I write about but my own experiences?

Danni said...

If you were saying that because you're able to build your strength to self propel, anyone can, then there would be a problem. But you're not. You're sharing your achievements and that's a good thing. It's a personal blog so it's going to be about you.

Last year I joined an online running group my husband and some friends are part of. I can't run. I'm almost completely bed bound, and the rare (6-10 times a year) occasion I get out of bed I'm pushed in a reclined tilt in space chair, as I'm not well enough to control a powerchair yet. My husband can happily run a marathon just because he wanted to, and some of our friends are working towards running a 5k. I want to hear about and celebrate all their achievements, whether it's getting a new personal best in a marathon or running a bit further before needing to walk. Outside the running group, I really love hearing that friends are managing to improve or gain a new skill, whether it's illness/disability related or not.

I'm really happy that you've found an enjoyable way to exercise, and that you're sharing your progress here. I miss being able to exercise, but reading about yours is good. No one is asking Mo Farah how he feels about people who can't run when he's winning races.

Lucy said...

Too right it's political: "I, a disabled person, can be fit and healthy and powerful, while still exactly as disabled as I am". Takes one fat, gay, outspoken, not at all sporty Canadian to disprove the universalisation that, "disabled people are weakened, defective abled people".

"I, a disabled person, can work out and become fit without any intention of changing or partially concealing my disability." Takes one fat, gay, outspoken, not at all sporty Canadian to disprove the idea that "disabled people who want to be fit and capable must do so through becoming/seeming less disabled". (How much would you have gained by that much effort spent on walking?)

Political as it gets.

*waves "Go Dave!" banner*

Lucy said...

Something else political to celebrate, a fat man in a fat-phobic society, a gay man in a homophobic society, who can enjoy and publicly share new "adventures as a physical being". It's a hell of an achievement.

To hell with political, and as political as anything can be, everyone's adventures in physical being are to be celebrated. Not suppressed, slighted, made reprehensible, made painful just because deviating from the ancient Greek standard of beauty.