Image of pageindex72008.gif

Image of selfadvocacy.jpg

You should feel sorry for a gentleman named Rusty. For approximately five years, Rusty was harrassed, stalked, and tormented. I know – I did it to him. He was my wheelchair technician.

When I was between the ages of 11 to 16, Rusty was the one who repaired my wheelchairs – and I had to be his worst customer, a nightmare combination of a seemingly spoiled little kid and fearless self-advocate. To both Rusty's and my dismay, power wheelchairs back then, over two decades ago, didn't have nearly the durability that they have today, and when coupled with the fact that I was a terror on wheels, my wheelchair was always broken. To simply remain mobile, I had to have a backup wheelchair for my backup wheelchair, so there was always at least one of my wheelchairs in Rusty's shop on any given day. And, I wanted it fixed – now! – needing it for school and independence.

Looking back, when I was on my best behavior, I called Rusty every three days to check if my wheelchair was fixed yet. On my worst behavior, I called every day at 3:30 after school to badger him. And, when I was really feeling fiesty, I just showed up wanting my wheelchair. Poor Rusty would come out of the back shop, sweating, covered in grease, and explain that he'd spent all morning switching all of my power wheelchair's parts from the broken frame to the new one, that he'd have my wheelchair back to me in a few minutes – and he always came through, week after week, no less.

Although Rusty was forever polite, he must have secretly wished me dead, dreading every time the secretary paged him, knowing that it was likely me hunting him, wanting my wheelchair. Interestingly, the last that I heard, Rusty is still in the mobility business, so I mustn't have been too bad. However, for old time's sake, I have thought about calling him now, and just saying, “Rusty, it's Mark. Is my chair done yet? I need it for school tomorrow.” I suspect that after all of these years, he'd quickly hang up the phone, chalking it up as a horrifying flashback.

I wonder, though, if I had not harrassed Rusty all of those years, would he have been so dedicated to fixing my wheelchairs so promptly? I hope so, as he proved that he was a man of integrity over the years. However, looking back, I did the right thing by pestering Rusty to no end, micro-managing my repairs. After all, it was my mobility at stake, and it was ultimately my responsibility to ensure that it was maintained – that is, it was up to me to be my own best advocate in making sure that my wheelchairs were repaired.

I often encounter users who don't self-advocate when it comes to mobility issues, where they silently let their wheelchairs sit in “provider limbo” for weeks or months, becoming frustrated and angry, rather than simply calling the provider and asking, “What's the progress on my chair?”

When consumers become very frustrated, they frequently ask me to get involved, and I'm always glad to help. However, when I call a provider about “Mrs. Jones' wheelchair,” the provider sometimes responds with a very logical question: “How come Mrs. Jones hasn't called me, herself?”

Of course, I don't have a good answer, and in such situations, it almost always proves that the consumer made no attempt whatsoever to contact the provider, electing to wait silently, then reaching out to me under the pretense that the provider isn't serving him or her properly.

Even more challenging is when a consumer's wheelchair has an issue, and he or she doesn't contact the provider at all. Instead, the consumer assumes an immediate victim mentality, noting, “My wheelchair is a piece of junk, and my provider won't do a good job fixing it, so I'm not even going to bother trying to get it fixed.”

At some point, the ball is entirely in your court as a consumer, and you can't drop it or you'll risk the quality of your own mobility. The fact is, even the best wheelchairs and most responsive providers aren't a substitute for self-advocacy. Inevitably, all wheelchairs must be serviced, many needing some sort of unexpected repair over the years – and it's up to you to spring into action, cranking up your self-advocacy, micro-managing the transaction, making sure that your mobility needs are met.

Now, self-advocacy doesn't mean being a jerk – you don't need to be a threatening lunatic to get your wheelchair repaired. Rather, self-advocacy means taking immediate responsibility when an issue arises with your wheelchair, and following through with actions. When your wheelchair has an issue, immediately call your provider, and arrange for service. At that time, request a diagnostics and repair time table of the service – how long do they think it will take to fix it? – and hold them accountable for sticking to the schedule. If on Monday they tell you that they'll let you know by Wednesday what's wrong with your wheelchair, call them yourself on Wednesday to get the scoop, rather than sitting by the phone for days if they don't call you. If they tell you on Wednesday that parts had to be ordered, and will arrive Friday, call them on Friday and make sure that the parts arrived. And, if they tell you that your wheelchair will be ready on next Tuesday, call on Monday afternoon and ask what time you can pick it up on Tuesday. That is, make yourself the guardian of the process, ensuring that your wheelchair gets repaired, and stay on top of the process.

Again, you don't need to be a jerk when monitoring your provider's progress on your wheelchair – always be polite, courteous, and rational. However, part of your job is to hold others accountable, and make sure that your needs are not overlooked. Providers are busy, they're real people with a lot going on, and they can't micro-manage every single repair project like it's the most important one on the planet. But, you can – and it's your responsibility to make sure that your wheelchair receives the service that it needs.

The next time your wheelchair has an issue, immediately call your provider and arrange service. Then, don't sit idle, but closely monitor the repair status, communicating thoroughly with your provider, with courtesy, of course. If your provider is already a true professional, he or she will value your concern for your mobility, respecting your self-advocacy. And, if your provider isn't so great, then your self-advocacy will prove even more beneficial, keeping that provider on track, ensuring that your repair project – your mobility – doesn't fall by the sidelines. Sometimes we have to be bold – not rude, annoying, or impolite, but simply responsible – to keep our mobility on track. Self-advocate your wheelchair repairs, and surely your wheelchair will spend less time in the shop, and more time fostering your independence.

Published 12/08, Copyright 2008, WheelchairJunkie.com