I’m a geek. Just the word ‘library’ kind of turns me on. So imagine how enticing it was when I was recently asked to choreograph a site specific dance performance set in what was the circulation desk for the old main branch of the Chicago Public Library. And here’s the kicker…. It is for a festival where all of the work focuses on disabilities.
So the question is do I have a disability if I have cancer?
I think most people with visible physical limitations are immediately categorized as having a disability. (And some of us cancer patients do have scars, amputation, baldness as a visual cue of our disease.) But what about chemo brain, or needing someone to take notes for you because you have neuropathy, or missing work or class for radiation treatments, or having to take frequent bathroom breaks? Do these limitations make us disabled?
Cancer legal advocates fought hard to get cancer and even our long term side effects included in the 2008 addendum to the Americans with Disabilities Act. Wahoo! I say forget the stigma of the label ‘disability’ or if you wanna be politically correct then go for ‘different abilities.’ Young adult cancer survivors spend a lot of time with broken hearts, financial mayhem, and employment barriers because of the ways our bodies live differently with chronic disease. I’m damn glad when our hardships are recognized, given some rights, and a little bit of performance space.
Do you think cancer is a disability? How do you feel being called ‘disabled’ -does this label help or hinder? If you don’t have cancer, have you ever considered it a disability in others? The model in the pic has a heart disease that caused the deformation of her arm. So if she had no arm and cancer, does that change the story? If she had an arm and cancer does that no longer make her disabled?
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
May 7th, 2009 at 7:46 PM
a sad as it is to say, To some extent yes it is a disabilty. having lung cancer, they are some things that i can no longer due. it is sad that is a disabilty. but as a disclaimer, i will say it is only as much of a disability as you let it be.
May 8th, 2009 at 12:43 PM
I have worked in healthcare for many years as an OT. So I have been exposed to those with various disablities. When I went through my cancer experience I never though of myself as disabled. Probably a mental thing. When I went back to work it was tough. I was expected to take care of patients when I was still a patient myself. There was one time when I was doing an evaluation of a patient and I felt so weak that I almost passed out in front of her thinking what a hoot that would be if the therapist ended up on the floor! I think sometimes with cancer if there isn’t a physical problem and we seem to “look” ok to others then they wouldn’t see a disability. I do agree however that to some extent it is a disability to have cancer.
May 8th, 2009 at 5:11 PM
I think part of Jon’s response was interesting - “it is only as much of a disability as you let it be.” I found many similar responses when I posed this question on facebook.
I believe that disabilities are one of the things in life that we are actually quite powerless over - we do not allow or disallow them in our lives. Nobody who has cancer or is not able to walk, or does not have a hand wants to or allows this condition. If we could cure ourselves we would.
I think that recognizing oneself as disabled is quite empowering in a way because it helps you to start to see more clearly the barriers in your life and how to problem solve around them.
Certainly insurance companies and employers discriminate against people with disabilities regardless of how the person living with the illness thinks or feels about the label.
May 10th, 2009 at 10:25 AM
Sadly, you often have to call it a disability to gain access to healthcare. My husband was uninsured, and going through his 5th bout with Hodgkins Lymphoma, and finally decided the only way he was going to get health insurance was to let his doctor say he was disabled. Unfortunately, he didnt live the TWO YEARS before he became eligible for benefits, even after being deemed “disabled”. The system is so screwed up!
Had he called himself “disabled” long before, he might have had health insurance, but would have been denied the experience of teaching and working and making art in a way that fulfilled him so very much. He was absolutely able-bodied until the last few weeks of his life.
I guess all I mean to say is that every situation is different. If calling cancer a disability affords a person access to resources they may not otherwise have access to, Im all for it. I think it comes down to learning how the system works, and doing whatever you need to do to best take care of yourself.
May 12th, 2009 at 9:25 AM
I have to say that I had to go back and look at the picture when you asked the question about the model. I did not notice what she didn’t have, but merely what she did have.