Everything Changes - The Guide to Young Adult Cancer

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?

Sexy Librarian
If you’ve been reading my blog or my book you know I’m a total geek for hardcore legal resources and factual information. (One of my alter egos: sexy cancer law librarian.)

Last month, a family member was in the hospital and I was seriously displeased with the administration. I called a meeting and sat down with the CEO of the hospital and his posse and read them a riot act, peppered with a few key nuggets of healthcare legal knowledge. Not only did I get what I wanted but, when I left they all said, “We had no idea you were a lawyer.” My reply “I’m not. I’m a cancer patient.”

My motto is ‘Think, question, and shout when you need to.’ You can do this quite effectively with a little bit of legal knowledge under your belt. So, stop thinking of healthcare law as a nightmare, and start using it to your advantage.

The Stupid Cancer Show
Listen tonight to the Stupid Cancer Show, at 9 PM EST when co-host Matthew Zachary and I will be talking about recent updates to the law that affect young cancer survivors. Our great guests are Joanna Morales, Director of the Cancer Legal Resource Center and Paula Pearlman, Executive Director of the Disability Rights Legal Center.

Do the words “healthcare law” excite you or make you want to run? Have you ever stated your rights or referred to a law in a medical setting? What were the results? What legal questions would you ask Paula and Joanna?