stella-young-quoteA few months ago, I wrote a purpose statement for my life.  It was an exercise suggested in the book “The Success Principles” by Jack Canfield.  He is a man I greatly admire for many reasons.  As one of the founders of “Chicken Soup for the Soul”, I kind of feel a connection to him because I have had eight stories published in those books so far. He also regularly uses a technique that I like called tapping (more about that here) And, if memory serves me correctly, I think he holds the Guinness world record for the author with the highest number of books to be on the New York Times Best Seller List, with something like a total of 47 books and counting.

When I heard that, the “author who has written a bestseller wannabe” in me was wicked impressed.

So I was intrigued when I came across this book he wrote about success.  In the first few pages he talks about the importance of having a purpose statement because the theory is that if you want to be successful in life, you have to know what your purpose is.  And that way, you can make sure that all your efforts along the way to success are aligned with your specific purpose.

That concept made sense to me, so after thinking about my passions and what I want to achieve, I came up with the following personal purpose statement:

“My purpose is to use my passion and communication skills to encourage, educate and empower people to respectfully break down barriers between people with disabilities and those without disabilities.”

At the core of my being, I believe everyone should be treated as equals.

Last night I posted a video to my Facebook page. In the video Dr. Frances Ryan, a wheelchair user, says we need to stop calling people with disabilities inspirational because doing so portrays them as something other than human.  She discussed how much she hates “inspiration porn” which is, according to the late Australian activist Stella Young “the misplaced admiration of people with disabilities because of their disabilities.”

I agree with the sentiment and said so when I posted the video.  The comments that followed led to a thought-provoking discussion.

What I found the most interesting was that my friends with disabilities were similarly put off by the word “inspiring” and there were a few of my friends without disabilities that didn’t seem to understand why.

My favorite comment was from my friend Lindsey, who happens to have Spina Bifida.  She said:

“My disdain for inspirational porn is that things that should be normal are “inspirational” when someone with a disability does it. I’m an inspiration for going to work. How is that different than my nondisabled counterpart going to work? To me, it implies I’m not expected to be able to work just because of my disability. So really the “you’re an inspiration” is a passive aggressive way of saying I don’t think disabled people can be normal.”

On this issue, Lindsey and I are on the same page.  Now don’t get me wrong.  In some cases, I am flattered when someone calls me inspirational.  But I want it to be specifically about what I do, instead of their assumption about what my life is like.

For several years one of my passions was wheelchair ballroom dance, and several times my partner Brandon and I were able to perform at various competitions.  On one such occasion, the guy who was filming all the performances asked me if he could put the video of one of our dance routines on his business web page.  I agreed.

A few days later, I went to the page and looked for the video.  It was there, and the caption read “I thought I had problems…” and went on to say what an incredibly inspiring performance our routine was.

The whole thing made me feel very patronized and “patted on the head.”

I know he had the best of intentions.  He, unfortunately, missed the point.  I dance because I think it is fun and it is important to me that people with disabilities be portrayed from a position of power, not pity.

I emailed him and let him know that my life was pretty great.  He took the comment down.

The pilot Chelsey “Sulley” Sullenberger, who landed a plane in the middle of the Hudson River did something inspiring.  Because of his efforts, people lived that otherwise would have died.

There were hundreds of inspiring acts in the aftermath of the terrorist attacks on September 11th, 2001.

There are also tons of examples of everyday inspiration, like when someone receives a kindness and pays it forward.

On several occasions, I have made this point.  My life can be summed up pretty easily.  I wake up every morning, have a caregiver help me get dressed, eat an English muffin and go about doing what I have to do for the day.  I don’t consider any of that inspiring.  I do what is necessary to live my life simply because the alternative would suck.

If someone watches a dance video of Brandon and me online and they are moved or inspired, that is awesome. If someone reads something I wrote and tells me that something I said made them see a situation or circumstance in a different way, and the writing inspired them, then that is cool.

What I am put off by is when someone sees me doing something they routinely see people without disabilities doing and call me inspirational because they don’t expect it from me. Or when someone calls me inspirational when they don’t know anything about me other than my disability.

Every few days I review my purpose statement and I make sure the things I am doing are congruent with the things that I want. At the core of my being, I believe that everyone should be treated as equals.  That is never going to happen as long as there are people who are inspired just because I am employed.

Sometimes people tell me that the specific things that I do have inspired them in some way, and on some days that is what keeps me going.  So for as long as I can I will continue to use my voice to write and advocate in ways that potentially empower people with disabilities and those who care about them.

And I will do it on purpose.


*Below is the video mentioned in this post.