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?

Update on Training and More New Projects

My back hurts. Isn’t that fascinating? I don’t know what it is, but back pain has been almost a constant in my life for about six months now. I am not a fan. On Sunday, I apparently broke myself while doing the dishes of all things. The rest of the evening was spent, crying and being carried and helped off the toilet because I could not stand up. At least I’m back at work. For the last two days I have been at home, whining. My back still hurts but I have gotten over the pity party and moved on. I am sucking it up like a boss. It’s one of my best skills. Tomorrow, I have an appointment to be fitted for a new wheelchair. I will hopefully see my doctor and be able to ask her about the pain. If not, I have to make an appointment. Yippee.

That’s enough of that, yes?

Taden is coming along in training okay. As usual I am sort of slacking, but all the snow and rain isn’t helping and then the back issue. I did finally get around to teaching her “Wait.” She used to charge passed me up the stairs which is sort of dangerous.  I trained “Wait in order to get her to wait patiently at the bottom while I go up.  As usual she learned it fast, but I did have to climb up and down the stairs 16 times on the first night of training before she waited until she was released. (She kept charging up as soon as I hit the top step, instead of waiting until I said “Okay.” I think our next thing needs to be eating on command. This dog is notorious for her strange eating habits.

Last night, Tom shouted from upstairs: “Why did Taden bury her food in my clothes?” This is not unusual. She often hides bits of her food and then later after she eats the rest of it will go hunting out the rest. Only sometimes she forgets. Other days, she won’t eat all together and never once has she eaten as soon as I put the food down.

I am not sure how to train this; my training books talk about over excited dogs, but not dogs that just don’t care much about their food. (She is fine medically, I’ve checked.) Does anyone have a suggestion?

In other news, I am taking a quilting class. I took one a few years ago and made this lovely quilt for my bed:

I made one more quit after that and started on one for my lovely Seester, but I didn’t finish because I got all wrapped up in the wedding. Signing up for the class motivated me and I finished the blocks on Saturday before my back started to hurt:

This one has a few obvious errors. The pattern was a little difficult for me. I picked it after being told it was hard because Seester loves stars! It goes fast but require perfectly straight cutting and sewing and since I sew one handed (I have to use the other to work the peddle) this is really hard. (The cutting I have no excuse for, I just suck. LOL) Seester is an awesome seamstress, so I am a bit nervous about this one!

I am making the next quilt for Charles. In this class we are actually doing two so the other will go in my spare room. or give it to Tom. Then, I have requests from Stephy and my youngest nieces and nephews! Classes are Wednesdays so I will try to do my quilting update on Thursdays from now on. I know, you’re terribly excited.