Monday, October 7, 2013

Screw A Cure, *I* Want Equality: A Letter to Rachelle Friedman

Dear Rachelle,

I recently read your article on the Huffington Post titled “Rachelle Friedman, 'Paralyzed Bride,' Speaks Out: More Than Equality, We Want a Cure”.  I applaud you for speaking out on what is undoubtedly a difficult topic.  However, your article raised some trepidation for me that I would like to take this time to address.

As a disabled person myself who does not desire a cure, I am concerned that you profess to speak for "99 percent of us" (not sure if you meant strictly paralyzed people or people with disabilities in general; the latter would concern me even more).  It is your choice to want a cure.  However, please don't speak for the rest of us - you admit yourself that there are people out there who don't want a cure.

Additionally, I am concerned that you may be "throwing the baby out with the bathwater", so to speak.  Things like muscle spasms and skin breakdown are only part of paralysis, though I don't mean to downplay the impact they have on your life and the lives of many others (muscle spasms and chronic pain, as someone with cerebral palsy, are something that I have to deal with as well).   Those are parts of disability that have a negative impact on our quality of life, and I would not hesitate to accept treatment to mitigate or completely alleviate these symptoms.  But desiring treatment for those parts of disability that are painful or even dangerous is not the same thing as desiring a cure.  Just like wheelchairs and other mobility aids, medication and other treatments are simply tools to help us get along in the world – not cures that will eliminate disability entirely.

Lastly, the title of your piece makes me profoundly uneasy.  “More Than Equality, We Want A Cure” implies that finding cures is more important than ensuring that people with disabilities like you and me have equal opportunities and civil rights.  And once again, it implies that all people with disabilities (or at least all people with paralysis) agree with your point of view – something that you, yourself, admit is misleading.  As someone who has been a wheelchair user for several years, I am sure that you have experienced the daily inequalities and microaggressions that come with being disabled in public.  From inaccessible buildings to preconceived notions about our abilities, we face a myriad of obstacles just to get through our days.  None of these obstacles are our fault.  The social model of disability says that our individual impairments (such as paralysis or cerebral palsy) limit us, but it is societal attitudes and barriers that disable us and prevent us from functioning.  A truly equal and accepting society would remove these barriers, so issues like health care, funding for medical equipment and accessibility, issues that you cited in your article, are all wrapped up in the fight for acceptance and equality.  This is the reality of ableism, and a cure won’t change that.  Desire for a cure should not eclipse our desire to fight the very real injustices we face every day, and the two are not mutually exclusive.

Though cure research is important for those who desire a cure, it is still simply research, research that will not affect us personally until it transforms into something that will be available commercially, or at the very least in clinical trials.  What’s important is concrete issues that affect us in the here and now – employment, transportation, the marriage penalty for those on SSI or SSDI, the disturbing trend of parents and caregivers murdering their disabled children...these are all issues that we should prioritize over a cure.  I will keep fighting for equality, acceptance, and simple basic human decency until the day a cure for me is found, and beyond.  Because disability is so much more than just a medical condition – it is a rich, nuanced culture intertwined with complex sociological concepts that come together to create the reality of disability today.

I hope you join the disability rights movement and fight alongside us.  Because at the end of the day, cures mean nothing when there is still not justice for all.


Anonymous said...

"Desire for a cure should not eclipse our desire to fight the very real injustices we face every day, and the two are not mutually exclusive."

This line is fabulous and SO true.

Also, I loved your last full paragraph, about how research results are not yet tangible but equality can and should be there every day.

We are indeed a rich and complex culture, and equality needs to be a priority for all of us.

Anonymous said...

So I don't know what percentage of people with SCIs want cures, but I can cite a 1994 study that 86% of people surveyed rated their quality of life as average or better than average. That, and other factoids about people with SCI's self-descriptions here: