The Two Most Important Lessons I’ve Learned about Disability (from a Diagnosis I Don’t Have)

Earlier this year we had “Autism Acceptance Month,” which until this year I had always known as Autism Awareness Month.  This year I learned many things about autism in the autism community that I had not previously known, even though I had considered myself fairly knowledgeable for someone who does not have autism nor immediate family with it.  What I ended up learning was an somewhere between a realization and an affirmation about how I thought about my disability and disability in general.

What many, if not most, people in the autism community (and by this, I mean anyone identified as or who self identifies as being on the spectrum somewhere, and their allies) believe is that in this country most people know what autism is.  What is needed now is not awareness, acceptance.  Autism has been classified as so many things — a disease, a disorder, a communication barrier, the list goes on.  The point is, there is a strong movement among people with autism that there is nothing wrong with them.  They are different, but no more than that.  With modern technology and modern ideas (which do not limits communication to speech), a growing number of people with autism, even those classified as “low functioning” can communicate with the rest of the world.  (The entire “functioning” scale is rather useless and demeaning, but that is a post for another time)

I also learned that what I thought of as the largest autism foundation is in fact quite the opposite.  Autism Speaks has no member of their board, or really any person with in the organization, who is autistic.  Instead, the organization is made up of people who have family, friends, etc. with autism.  They repeatedly refer to autism as a disease which needs a cure, as something horrible to discover in your child, in the burden it places on family.  And then I learned of an organization called the Autism Self Advocacy Network (ASAN), made up by people with autism for people with autism (and their family, friends, and so forth who do not view autism is a terrible burden).

This is when I began to realize that I view EDS in much the same way.  While I very much hope that there is a treatment in the future for the vascular type (which would benefit many more people than those with EDS), and someday after that treatments for all types of EDS, the idea of a “cure” unnerves me.

EDS is written into my very genes, and our knowledge of what our genes contain and effect is growing but still limited.  In fact, they have not even identified the gene responsible for my type of EDS.  EDS is linked to so many other disorders, most of which also do not have defined genetic causes.  While I would welcome a treatment that would lower my pain (without the use of opiates as I currently need), I am not sure I want to change what is in my genes.

What else would it change?  Would the change be something small?  Or would it change something like my sexuality?  There seems to be a strangely large number of people who identify as something other than straight who have EDS.  I have no idea if the two are related, even on the smallest level.

I understand exploring genetic therapies for diseases which kill or results in an unlivable life (one of my points of reference on this is a disease called Epidermolysis Bullosa, which results in the skin tearing away from the body at the slightest pressure — the most severe form kills by a person’s late teens).  My life is complicated, in my disorder resulted in disability, but that does not mean we need to fix it.

Just because a person has a disability or illness does not mean that person wants to be cured.  The medical community says “cured.”  The rest of society says “fixed” or “better.”  If something needs to be fixed, that means it is broken or wrong.  I am not broken, and nothing is wrong with me.  While I very much would like to be in less pain, I do not want to get rid of my EDS.

It’s not just that disability has become part of my identity — because it wasn’t always.  In fact I could run miles in high school and played on several sports teams (albeit quite badly — between the clumsiness that comes with EDS and my constant injuries, I am certainly not a natural athlete).  It’s that my disability is part of my genes, it’s in the smallest part of me, and in every part of me.  Even if I stopped using wheelchair, even if I suddenly grew the ability to play pro sports, it would still be part of me.  And I am done believing that it must be cured.

For years, strangers have been coming up to me asking “What’s wrong with you?”  And for years my answer has been “Nothing.”  Before I meant it in a snarky way, and I will continue to mean in a snarky way.  But I realized that I was right.  I may be weird, a total geek, disabled, and I’m sure many many other things, but I am not “wrong.”

As I have gone on far longer than I meant to thus far in this post, I will mention the second lesson I learned from ASAN, and create a true post about it next time.  The motto of ASAN is “Nothing About Us Without Us.”  I think this sentiment needs to become true of the disability community at large.  Every article I read, every story I hear, even ones that are supposed to be affirming of disability, always are about the burden or the trouble or the difficulty the family faces by having a child with a disability or chronic illness.  The only stories I hear or articles I see written (other than in disability media) it is about how a person with a disability “overcame” their disability, as if this is to be our sole occupation in life.  For too long disability has always been a negative, and thanks to modern views and modern technology, we can finally begin to change that.  More on this topic next time.

Oh, and my new tag on posts of this nature is going to be “positive disability.”


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