I was told I had ALS five years ago, but my symptoms started much more slowly than is usual. For all those years it was easy to think I was completely okay. But now I have no arms or legs and they say my lungs are going bad, so I need to use this respirator several times, day and night. I’m almost completely paralyzed but I can operate my chair using head movements.
I was diagnosed with dwarfism at 13 months. The government immediately labeled me as disabled, but I didn’t feel disabled until I was six and people started making fun of me. It definitely had a negative effect on me for many years. But then I became a musician and now I’m a busy actor, so that’s certainly helped my sense of self-esteem.
I’m bipolar. It’s an invisible disease, but it is my shadow, my life-long partner. My artwork is informed by my disability and the impact it has had on my life. One of my works uses words and slogans of medicine bottles, directions for their use, etc. I do not hide my imperfections. If I cut myself with my mat knife I let the blood stay in the piece.
I’ve been severely depressed since my teens, and I’m told I have dementia now too. They’ve done scans of my brain and discovered I’d had a lot of mini strokes over the years, none of which I knew about at the time. My doctor makes me take so many pills, and I’ve had a lot of shock treatments too. But I don’t think any of it does a thing.
I study law at The University of Texas in Austin. This summer I’m clerking at a disability rights firm. I used to be angry about my disability, but now I don’t waste energy worrying about what other people think. In fact I get approached all the time – people hug me and tell me they love me or they can save me! Pretty weird stuff.
Guler: We all have some kind of a disability, but we train hard and our team does very well. I’m a runner even though I’ve been blind from birth. I run with a guide – I tie one end of a rope around my waist and my guide runs in front of me holding the other end. I have such excellent hearing that I can follow my guide just by the sound of their feet.
I was in a car accident a couple decades ago in Montreal, where we live. Now I’m a near quadriplegic (I have partial use of one arm). It took us both a few years to adjust, but now we travel everywhere – London, Paris, Lisbon, Boston, Martha’s Vineyard, Switzerland... This is our second trip to NYC. We’re staying in Ridgewood, Queens right now. People think it’s so difficult to get around but it’s rarely ever a problem. I love NYC’s subways, they take me everywhere!