It’s Not the Worst Thing

This morning while conducting some research for a future post, I came across several blogs related to disability and wheelchair use. Specifically, they discussed adjustment to using a wheelchair for mobility. As I read them, I noticed some recurrent themes and felt compelled to write a post of my own.

Most of the blogs I read were written by people who were reluctant to accept their wheeled mobility. They spoke of the wheelchair using derogatory terms, and talked about being “confined” to their chair or “dependent” on a device for their mobility. I feel I must point out each writer was someone who had acquired their disability and had once known walking.

Here’s the thing though – I was once a walker too. I have not always relied on a wheelchair for mobility. I have had to adjust to life on wheels rather than on two feet.

My friends may tell you my adjustment was not always pretty, and they’re right. Sure, I knew at some level I would need to use a wheelchair for 100% of my daily mobility. Eventually. Some day. In the future.

I never expected it would happen at age 20. I had not truly prepared for the adjustment to start while I was still in college, getting ready to take on my final semester of undergraduate school. I wasn’t ready to explore all of the changes created in my everyday life.

But even though I wasn’t ready, I always knew this change was not the worst thing which could happen to me. Using a wheelchair is never the worst thing.

How do I explain that to someone recently paralyzed after a car accident or injury? How I do convey this to someone recently diagnosed with multiple sclerosis or another neuromuscular disease? Perhaps I don’t. Maybe people need to come to the realization over time in their own way. I think I had an advantage over some.

When I lost the ability to walk, I never lost my ability to function. My wheelchair was the tool which allowed me continued access and participation in my world. My wheelchairs (I have had many over the years) have never felt confining or limiting. They are my legs and feet.

The worst thing is not having to rely on a a wheelchair. Far worse is to be dependent on a wheelchair, and have it taken away.

I know people who are stuck in bed for weeks because they are unable to have necessary repairs performed on their wheelchair. The repairs may not have been approved yet by Medicaid or Medicare. Or perhaps there is not a technician available to get to the person to perform the repair. Or they are trapped in an abusive relationship and the person who is supposed to be their caregiver has decided to “punish” them by denying them their wheelchair. It happens. I know several women who have escaped such a situation.

The worst thing is not having to rely on a wheelchair. Far worse is to be dependent on a wheelchair, and not find access in society or your community.

I remember the days before the Americans with Disabilities Act. When I first moved to Albany, not every corner on every intersection had curb cuts. My friends and I knew where to cross the streets so we could avoid the curbs when we walked downtown. We frequented Michael’s, a dive bar a block away from college, because it was the only bar within walking distance which was wheelchair accessible.

I’m not saying access barriers have gone away. There are still places which are not accessible to wheelchair users. I know people who have been on waiting lists for accessible housing for years and who are unable to independently access their community while they wait. But I know we have made great progress in many areas over the past twenty five years. As one example, in 1987 when my family flew to Los Angeles, I needed to be carried aboard the airport shuttle because it was not accessible. Last month, I drove my wheelchair up the ramp of the shuttle bus.

My wheelchair is an extension of me. It is a part of my body. I know its quirks, its sounds, its likes and dislikes. I know how much pressure to place on the joystick to smoothly clear a threshold without spilling my coffee. I am an expert at swerving to avoid pedestrians who are too busy texting to look up and realize they are about to walk into me.

This shiny piece of red and black metal has given me opportunities and allowed me to live the life I want to live. My wheelchair has made it possible for me to explore parks and nature trails. It allows me to work and follow my passion. It empowers me.

Let’s face it, my wheelchair also grants me certain privileges. I always get close parking, even at the mall in December. I never get stuck doing dishes at my parents’ house after holiday dinners because my wheelchair doesn’t fit near the sink. Nobody ever asks me to help them move or carry heavy boxes.

Yes, adjusting to disability takes time. A wheelchair is not everyone’s preferred mode of mobility. But, needing to use one – well, it’s far from the worst thing that’s ever happened to me.

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10 thoughts on “It’s Not the Worst Thing

  1. Excellent perspective, Dee! I think you’re right….there are things in life that people must come to on their own terms in their own time, but you’ve done an admirable job of presenting a positive perspective and that goes a long way in helping people who are ready to embrace a new view!

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  2. I would imagine that transitioning to a wheelchair would be similar to facing other difficult life changes- those with a positive outlook and attitude will see how much worse things could be, while people with a negative outlook see it as a doom-and-gloom scenario. I hope your words here can help at least one person shift toward the positive perspective.

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    • Thank you. I have been accused of being a bit to optimistic in my life. But things could always be worse. And that attitude has helped me and others like me.

      When facing an unknown situation, or what seems like an insurmountable challenge, a positive attitude can be difficult to find or maintain. But perspective helps. Am I living on the street? No. Am I living in a war zone? No. Do I have clean water to drink? Yes. Things could always be worse.

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  3. This is truly the best (and only) way to look at wheelchair usage while also staying positive. I’m glad things have gotten better since ADA but there’s still a while to go before everything is truly accessible.

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