12 July 2012

Toilets push cure to the wayside

An odd title, I know, but it's how I frame the war on paralysis.

Here's a picture of the toilet at the train station near to my office. Notice how the handrails on the left are so far away from the toilet? Notice how high the handrail is on the right? Well, maybe you don't know this, but I don't think that this toilet is built for someone who is a paraplegic. Getting on the toilet would be easy, but with the handrails so far apart, I don't thing that I'd be able to take off and put my pants back. Even though it's not a pretty site, I bet you've never thought about how someone like me can take my pants off and pull them back up if I can't stand up. Anyway, that talk is a whole separate blog.

Now, before my regular readers wonder why I've moved off cure to talk about toilets, I'll tell you why.

While I was first in hospital, I swore that I would stamp out problems like this. My friends used to joke that I'd be at the local ward office everyday with pictures of busted up road or ramp cuts that were no good for wheelchairs and threatening to withhold my little bit of tax for inaccessible areas.

So do you know what I did about this toilet and it's poor accessibility? Nothing.

So now you think I've become discouraged, right?

Well, no. I just decided to use my fight for something much more important; a cure for spinal cord injury.

See, before I left the hospital I had already started this blog and little by little met other activists and decided that my energy should be spent on cure.

So, are inaccessible toilets and roads unimportant? No, but there are a lot of other organizations and groups fighting for this; my job is to battle for cure.

Why not do both you ask?

Because whenever I see organizations who try to improve the quality of life AND cure, they inadvertently end up on quality of life as the main or only part. Just look at the Rick Hansen Foundation.

It's easy to fall into the 'quality of life trap' as I call it.

Why? Because the results are instantaneous. It looks like you've accomplished something right away. Immediately you receive praise for your hard work and immediately improve the quality of life for many people.

I'm not saying that improving quality of life is unimportant, I'm just saying that when you try to do both, cure falls by the wayside.

Just my opinion, but it's the reason why I left the toilet problem alone. I know that after I get one toilet fixed I'll start carrying around a camera to take pictures of broken concrete and asphalt. And where will that leave my cure work? By the wayside along with every other organization that tries to do both.


  1. A great analogy - one I hadn't thought of before!

  2. Advocacy for what you call "quality of life" (for me, it is accessibility and employment equity) has made a million times more difference in my life than some BS ethereal cure ever will. I can always tell the cure pixies by their mantra: "it's just five years away." Deluded.

    1. The problem with anti-cure people is that they don't listen or read the whole story. They see the word CURE and fly off the handle. The post says exactly what you're saying. If you believe in quality of life issues, do it, but don't mix.
      You should read it again as there is no point in the article that says quality of life is unimportant. Please read it again and show me where it says this. Also, please read again and tell me where it says 5 years.
      You're anti-cure is like a religion and because it's like a religion you miss ALL the facts just to spout off your anti-cure message. READ THE POST AGAIN AND TELL ME WHERE HE SAYS THAT QUALITY OF LIFE IS UNIMPORTANT. you want to shoot off your loud mouth? Stick to the facts and leave your anti-cure bigotry out of it.

    2. Anti-cure bigot. I have to remember that one. This guy is the perfect example. Anti-cure bigot.
      This is guy is not pro-care, you're right, he's just an anti-cure bigot.

    3. "anti-cure bigotry" Quite funny that. Your sputtering fog of desperation has clouded your reason. I think all bases should be covered: care today, in the "now", and rational investment in "cure". The problem are the tiny minority who are increasingly resentful of investments in quality of life, seeing it as taking away from the vaunted around-the-corner "cure". Word yo.

  3. I see your view .. however.. if we are faced with wrong .. most would dive in to help . I see often where the minds eye is looking the other way for various reasons no doubt .. but a opportunity presents its self only once . Sure you may see another picture taking opportunity in a different scenario... Isn't it because so many are paralyzed that a cure becomes a fight ? I strongly feel the two needs must find a way to unite . Many like it or not see the cure posts etc .. but it becomes redundant and lacking many examples that stay in minds of the viewer . Look at aids.. old ads .. it was by numbers it gained great awareness .. seen as a face ... Life stories of many not few ... They took a leap and showed the ugly side of the condition . This gets awareness through compassion. It may be difficult Dennis , don't ya think a change is warranted in how cure is being put out there ? To know all we must tangle with every day proves our cure need is real . No one wants another to not be able to reach toilet seat covers placed behind a toilet up high or toilet paper placed so far away you could be hurt by reaching.. in handicapped stalls . To have grab bars out of Ada placement guidelines . Not be able to grab at all because hands can't fit in the gap when a quad has bent fingers. No one can see such struggles. You , Dennis have a bigger audience than I .. you have similar needs .. why not give your pics to another to post under your blogs that you trust. I get that your battles must be picked and you can't do it all . I am saying your exposure can help the cure need. Many like you can. If I felt I understood enough of the science .... Research being done for a sci cure .. I would jump on making a difference . I watch others trying hard to catch up on a topic I had no awareness it existed before I joined fb a yr ago . Yet paralyzed since 2004. This should be a focus .. get out there to more faces .. put posters in sci wards of hospitals .. rehabs.. bus locations ... Billboards .. schools. The fight on sites may have eyes on them .. what do they do to bring in new faces .. to increase awareness .. get in the faces of our individual state leaders ? I am constantly spinning my wheels reading . More action is needed i feel . Please forgive my errors, it is a thumb & cell thing. Dennis, please take no offense. I am in on your efforts .. think we need to speak and listen to more in our shoes .. and realise our exposure is a opportunity to cure sci. There really are not many showing our challenges . The push girls mocking dancing fell short in my opinion. I can't dance .. can you ? Call it what it is .. let's get real so non sci hearts join our need for cure and awareness for access .. treatments etc. Lisa tremaine