Tag Archives: Adaptive Driving

Hate Being Called Inspirational Too?

stellaThere are a lot of smart women in the world, and then there’s Stella Young, a comedian and disability advocate from Australia who sets the smart bar even higher.

She can see the world in a way most people cannot, especially when it comes to how people with disabilities are treated, and she has an immeasurable talent at describing what she sees. Stella can make the most uninterested person perk up and take a listen. It’s very rare when a person like Stella comes along.

What she tends to focus most on in her comedy is the objectification of people disabilities, which can lead to one of the biggest pet peeves of people with disabilities – being treated as overly inspirational. She gave a TEDx Talks speech in Melbourne last year on this very topic, titled “Inspiration porn,” and it’s changing millions of people’s views around the world.

Born with Osteogenesis Imperfecta, Stella has never known life other than being disabled so to her she is perfect the way she is and never pines for something outside of her life. She also works as an editor for the Australian Broadcasting Corporation’s Ramp Up disability news site. Yes, Stella only sees ability.

Her TEDx speech however is one of the best TED speeches I’ve ever seen. You should definitely take a listen if you’ve ever been irked at being called inspirational. In her speech she talks about how neighborhood leaders wanted to nominate her when she was a teenager with some kind of inspirational award, but she declined because she knew she wasn’t worthy (“All I do was watch Buffy as a kid,” she says).

Her memorable line, “Just because I’m sitting doesn’t make me inspirational,” is so very true, and it’s worth more than gold. I can totally relate to Stella’s experiences. After my injury I was constantly called inspirational for just getting up and leaving the house. As Stella eloquently describes in her speech, this is particularly quite offensive.

More than anything, Stella’s speech really shows that most able-bodied people must think living with a disability is incredibly difficult, which is how inspiration porn came about in the first place. The secret however is that our life is truly not bad as it seems.

Sure, there’s a lot of stuff we can’t do, but love, family and purpose, those are the things that pull us through. We’re definitely not here to be your private inspiration-makers.

– Watch: TEDx by Stella Young – Inspiration Porn and the Objectification of Disability

How do you feel about being called inspirational?

 

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My UNlimiters Challenge: Learning to Drive

Transportation is one area of my life where I do not have the independence I wish I had. My husband and I live in a rural area, where buses and other public transportation are not available. Therefore, when I want to go anywhere, I have to ask my husband, my parents or my friends to drive me. This really inhibits my ability to do what I want, when I want.

Physically, I am capable of driving, but learning to drive has been a huge challenge for me, a challenge that I have struggled to overcome for the last 15 years. I have worked with almost every agency available to reach this goal, but it has never worked out. Every agency has wanted me to accomplish my goal in a certain amount of time, and when I couldn’t do that; I was told that I couldn’t do it at all.

For a while, I accepted that. Then one day, I decided it was crap, and so were all the agencies I had been working with. Legally, I didn’t need them to learn to drive, so I decided I was going to do it one my own.

I took and passed driver’s education in high school, so in June, for my birthday, I went to the secretary of state and applied for my driver’s permit, for the fifth and what I hoped would be the last time. Then I purchased some temporary hand controls, my husband put them in the car and I was one my way.

Learning to drive on my own has been a lot harder than I expected. I need to practice, a lot. In order to do that, I need people to take me driving. My husband, kind of sucked at it at first, he would freak out at the slightest mistake, and his yelling would make me so nervous and stress me out so bad that I would end up crying when I finally parked the car. He didn’t mean to yell, or upset me; I knew that, but I still took it personally. I started to hate driving.

For while, I tried to drive with other people; but schedules limited my ability to practice. So my husband and I tried again. He has gotten much better and I am starting to improve as well. I still lack the confidence it take to drive well. I wish I could buy that online. Unfortunately, I am told that it will only come with time and practice.

I am probably going to have to apply for that permit at least one more time; it expires in December. I am nowhere near where I thought I would be at this point, and I can’t help but feel a little discouraged. I do not want to fail at this, so I can’t give up. I have to keep trying. No matter how long it takes me, I want to have the independence that driving can bring me. I want to go where I want, when I want and to live my life unlimited.

My minivan, my unlimited life

Some people eat ice cream or watch Superbad to get happy, I on the other hand have found a much more visceral dorm of happiness – I drive my minivan.

When I finally got my driver’s license at age 25 (a very daunting task for a C5-6  quadriplegic mind you; tons of extra gadgets to get the hang of), my eyes were opened to the therapeutic benefits of getting where you want to, WHEN you want to. No limitations. The same as everybody else (something you rarely get when you use a wheelchair). Every time I get behind the wheel my disability visage transforms into just another car on the road. I love it.

And although yes, it is a modicum of independence, the adapted minivan (the minivan combined with the lowered floor and ramp) is no small purchase. With a base price (new) of $35,000 (and that’s on the low end ) lots of folks just don’t have this kind of money. Buying a used beater, the birthright for most first drivers, isn’t an option for us.

This is especially not cool since so often people with disabilities can have a harder time getting employed. Workplace discrimination is a sad but true reality. So…we struggle make enough money AND our vehicles cost more. Great. I had a hard time figuring out funds myself. Thanks to help from my family, I ended up purchasing a used 2006 Dodge Grand Caravan (1 year old) from a rental car company for $12,000. We figured that was a wise move.

And I was fortunate to have my health insurance cover the installation of the Braun lowered floor/ramp; a huge expense I was worried about (it costs much more than the van itself). I was hugely lucky. But, not everyone is this lucky. I know hundreds people with disabilities both in person and online who desperately need a van. They want to get one, but don’t have the funding. Many of these folks search and search until they find a used one they can afford (but not often though).

Others throw a benefit for themselves to raise the money. This can sometimes work, other times not so much. And others just give up. I really hope adapted vehicles came down in price one day. At least we have newly adapted vehicles like the MV-1, the first adapted vehicle to be made on an assembly-line from VPG, which has greatly lowered the base price.

And I drive from my wheelchair. Yeah, I stay in it. And boy is it sweet. This by far is my most favorite adaptation in my van, and it’s made possible by my EZ Lock automatic chair tie-down system; a slick contraption that keeps my wheelchair in place as I drive. I just drive my chair over it and hear for the “click” (to know when I’m locked in). Such a great independence-enabled thing. Automatic tie-downs truly are the only way to go.

As I do get locked in and turn on my van, feeling it purr…a flurry of endorphins 9 times out of 10 inundates me. This feeling cannot be topped by anything else in my life. Shopping, traveling, my boyfriend even, nothing.

And when I bring my minivan up to speed on the freeway, nothing can beat that stronger and stronger feeling. My unresponsive body is no longer a factor at that moment. Not behind the wheel. The car responds to me and that is all I need. And OMG oh what a feeling.

Thank you, my sweet Silver Bullet, my Dodge Grand Caravan, for bringing me the feeling of limitless joy.

What do you drive? And what kind of adaptations do you use?

Links

– Dodge Grand Caravan

– Braun Entervan

– EZ Lock tie-down system

– The MV-1 from the Vehicle Production Group

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