Tuesday, February 21, 2012

Disability: An Ingenious Way to Live

My favorite quote is from a man named Neil Marcus: “Disability is not a ‘brave struggle’ or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live.” I first read it sometime during college when my poetry professor, after hearing some of my poetry related to disability, suggested I look at the work of some well-known poets with disabilities. That quote has been with me ever since.

After college, I even got a tattoo inspired by the quote and designed by my best friend:

It's a stylized handicap symbol with the word Ingenuity as the wheel. This was taken right after it was done. 

But even before I knew who Neil Marcus was, Ingenuity, process of applying new or inventive ideas to solve problems or meet challenges,  had been the key to living my life as independently as I could. All my life my other friends with disabilities would remark about how I was able to do things that they couldn’t do. It wasn’t that my disability was any less than theirs or that I was any better at being disabled. It was just that I knew that there was always a way, you just had to be willing to find out what that way was.

I think my Dad was the first person to show me how ingenuity could change something from impossible to possible. I think I was maybe three or four when my twin and I got big wheels for Christmas. Of course I couldn’t ride it, but I liked to store things in the seat and push it around the yard like a crude walker. Sometimes, when she was feeling generous, my sister would push me around on it. Then one day, my Dad used screws to attach a pair of old sneakers to the peddles. It didn’t work exactly the way we thought it would, but it was the first of many designs that eventually got me riding an adult tricycle by middle school.

Since then, I have been using a little ingenuity to get through my daily life. A few weeks ago, I came across a situation while sewing that required a little bit of ingenuity. For me, the hardest part of making quilts is the cutting. I used to do all my cutting while standing at the kitchen table, but recent back and hip pain, mixed with a new, higher kitchen table made cutting this way difficult. My solution was to take my cutting mat upstairs to my sewing room and put it on the floor, then cut on my hands and knees, giving me better leverage on the cutter and more control over my ruler and the fabric. I quickly realized that that position was helping me cut easier, but it was also putting too much pressure on my hips, so after trying a chair, and then a foot stool I finally came up with this:

A sturdy laundry basket, flipped over and covered with a towel for cushion. Please ignore my mess!

It’s almost perfect. It allows me all the benefits of cutting from the floor without putting pressure on my hips. But it does cause a small kink in my neck if I am at it for too long.

How I use it. Please ignore my hair. I think my next blog will be called Bad Hair Days, in which I post the crazy things my hair does on a regular basis.

Here are the fruits of my labor: 200 8x8 inch squares. Which now have to be cut into triangles. Oy.

What are some of your most ingenious solutions?


  1. I love the tattoo! Absolutely beautiful. And what a great quote.

    I dated a wheelchair user once who said, "I can do anything you can do, I'm just creative in how I do it."

    1. That is it. Exactly! Thanks for the tattoo love!

  2. This is so awesome. I try to be creative and work out how to do things too even when someone tells me that it won't work. Too many people just give up when they can't see how something will work right away.

    I love your tattoo.

  3. I always adapt things so I can do them, just like you it started with my parents. I had an adult trike too. The most creative solutions came when I had a baby. Slings work better as a kind of seat when they start sitting and you can wheel with them in your lap. Baby carriers give you both hands for balance or wheeling. Lose your balance with the baby (it happens to even AB parents) kneel and lay the baby on the floor rather than try to catch yourself and risk a drop.
    I used to push wet laundry on my wheelchair from the washer to the dryer. Mike built me a special "napkin holder" to keep my foot from turning in after my hip surgery. It's plywood, foam and soft fabric. I just put my foot between the sides in a nice coushy spot and it can no long roll in and cause hip pain.
    I could go on forever...