Where Is Our Community?

I just caught up on the end of Season 2 of Push Girls, and I love it. I love that these women go do awesome things that others probably think are impossible.  They go parasailing, kayaking, and drive race cars.  They are awesome women – I have even met some of them.  I chatted with Mia about our mutual dislike of a particular pair of gloves, and I caught Tiphany and gf Kim’s dog when he tried to make a break for it at the beach.  They have built a sisterhood, and much of it revolves around their shared experiences of using wheelchairs.

 

What many people do not realize is that there is a hierarchy to people in the Disability Community – the top tier are those who were born with a disability and always used a chair, or those who had a traumatic experience and are now paras/quads.  Those are the “cool” people, the ones who do not have their disability or use of a wheelchair questioned.  There are also those with disease processes so well advanced that they must use a wheelchair, and no one questions them.  These are often people who have been sick for a long time, and spent as long as they could fighting the need for a wheelchair.  That was the culture, after all.  Using a wheelchair meant “giving up” or “giving in to your disease.”  The elderly also get a pass when it comes to questioning disability.

 

Who does that leave?  People like me.  I can stand, and even walk a few steps.  I have good days and bad days, and my ability changes depending on what kind of day it is.  I use a wheelchair when I am not in the house (and sometimes when I am in it), and there is no end to the grief I take for using it.  I am hassled by others, sometimes people with disabilities, sometimes others, when I move my legs while in my chair.  I am questioned when I can climb down into a ride vehicle in Disneyland.

 

There are a lot of people like me – those of us on the cusp of full-time wheelchair use.  And I want to know – where is our community?  Where is our support?  There are countless foundations and organizations and charities that are devoted to helping people with spinal cord injuries or other traumatic injuries.  And there are foundations for a few of the more common well-known diseases, like MS.  But for the rest of us – we are on our own.  

 

There are no support groups for people who need to make the decision to use the chair full-time.  There are no charities that will help people like me, with spinal cord and nerve damage, but not from a trauma.  There are no television shows who want to show the daily struggle we face.  There is no community for us, as we watch our bodies slide ever further toward irreversible damage.

 

There was a time, shortly after I started using the wheelchair, that I basically pretended to be a paraplegic in public.  I really could not walk, nor could I stand or reach over my head – but my legs were only a small part of the problem.  At the time my skull and spine were compressing my spinal cord/brain stem, and cutting of spinal fluid flow.  This meant I had no balance, proprioception, or muscle strength.  But it was easier to pretend I could not move my legs than have onlookers staring and whispering criticisms to each other.  It was easier to pretend a more comprehensible injury, one that necessitated wheelchair use, than to have people actually come up to me and question my illness.  

 

Eventually I became comfortable in my wheelchair, and I realized that I needed to stop caring.  I knew I needed the wheelchair, my medical specialists knew I needed the wheelchair, my family believed and supported me, and that was enough.  So I stopped caring if people saw me cross my legs while in the wheelchair.  I stopped caring if people saw me climb into the boat at Disneyland.  And I realized that just as the women from Push Girls had created their own sisterhood, just as there is community for so many other types of disability, I and other need to create our own community, our own culture.

 

There are so many people out there who think they are “too young” to need a wheelchair, unless there is a trauma in their life.  In my experience, “too young” is anywhere from 20 to 60.  But it does not matter the age or the disease/disorder that gives the person the wheelchair.  What matters is need.  I need the wheelchair, as do so many like me who do not fit into a neat category for others to understand.  Too often, that means we avoid using the chair or pretend to be something we are not.  It is time we build our own support network, our own community.

 

We are part of Disability Culture, but only if we make the effort.  We are not fakers, attention seekers, or hypochondriacs.  We have disabilities that do not fit into a pre-made box, so it is time we made our own.  We think we are rare because we do not talk about it, but there are a lot of us out there.  And this is my first step in making my voice heard, my contribution to Disability Culture.  People put us in the category of “non-traumatic acquired disability.”  But it is traumatic – it is hard to realize your body is fighting back, or giving out on you.  It is traumatic to have to make a decision that will affect not just you, but everyone around you.  Too many of us do not get the support we need from doctors, organizations, friends, even family.  So it is time we started supporting each other, making our own community.  

 

Who knows?  Maybe someday we will get our own TV show.

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Inspirational Cripple Porn…

Inspirtional Cripple Porn:  When people with disabilities take part in normal, day-to-day activities, and are held up by able bodied people (ABs) as an “inspiration.”  Basically the idea is that if a person in a wheelchair/missing a limb/vision loss/deaf/etc can overcome their illness/disability, then anyone can.  And also, the person seeing such an image or description should get off their rears and do more with their lives.  The word “cripple” is used purposefully because such images/sayings are generally condescending and do not respect the PWD as a person, but instead reduces them to an object to be used.

 

Here is why most people in the Disability Community hate it…  

  • First, we usually have not “overcome” a thing.  In fact, many of us PWDs hate that word.  
  • Second, we are not here to inspire you – we are not a Hallmark card.  Our disability does not render us incapable of doing all the things an AB can do.  Sometimes we do them differently, but we can do just about anything.  
  • Third, most of those images you see floating around the internet were NOT taken with the person’s permission.  That is just creepy.  
  • Fourth, when PWDs are viewed like that, it is almost always with pity.  It was just assumed we were too broken to do something, and the “attaboys” and the “Good for yous” we get for something as simple as going to Disneyland are condescending and rude.  This rudeness is often excused, saying that the AB meant well.  I seem to recall a saying about the road to Hell beginning like that…

 

Today on the NBCNews website there is a story about a woman somewhere in Ohio who was in an accident that left her paralyzed.  Her dream – to walk down the aisle.  And, though what I am certain was a lot of work and determination, she did so, with the help of two people on either side of her and a walker at the altar.   I am very happy for her – I too made a point of standing and walking down the aisle at my wedding, even though we knew that I would likely use a wheelchair for most things from that point on.

 

I am in no way belittling her goal or her struggle and work to get there.  I understand why not needing someone to wheel you down the aisle is important.  What annoyed me is that is was a news story.  And people from all over the country donated time, money, equipment, and even catering all the way from LA for her wedding.  

 

Would this have happened if she were able bodied?  Would she have had people from all over the country trying to help her have a great wedding?  I highly doubt it.  This whole thing was because she was paralyzed.  And then people made a news story out of it, so the whole country could feel good about themselves, basically feeling charitable vicariously through the people who donated to the wedding efforts.

 

I get told I am inspirational all the time.  I use a wheelchair full time and I go to Disneyland by myself.  At least a dozen times I can remember people have told me I was inspirational, courageous, brave, or some other pointless adjective.  I went to Disneyland by myself.  Lots of people do that.  The only reason I am “courageous” is because I have wheels under my butt.  Other people who go to Disneyland by themselves certainly do not get stopped to hear how courageous they are.  I always smile and turn away, as I am not certain I would remain polite in my responses.  It is Disneyland after all…

 

I am not a Hallmark card.  I am not here to inspire ABs to go to the gym, follow their dream, spend more time with their children, live healthier, enjoy the “little things” in life, or whatever other platitude they come up with.  Even when people are trying to be nice, or at least clever about it, they still come off sounding like idiots.  For example, in order to not “talk down to me” they tell me “Wow, you really are good at using that wheelchair.”  Really?  That is the best you can do?

 

Every time I get a stupid comment like that I think back to an old CSI episode, where someone was murdered at the Little People of America (LPA) convention in Las Vegas.  Gil, in an effort to not tell the Little Person (woman who he was flirting with) she was doing such a good job, considering her disability, remarks “I was admiring your reaching tool.”  She responds “I have one I use to wipe my tush with, would you like to see that one?”

 

This is much the same attitude I take (in my head whenever I can).  When I must respond, I use what my wife always says – “Of course we are good at it – this is our life.”  And that is exactly what it is – our life.

 

At some point I will probably launch my own Inspirational Cripple Porn parody, with quotes about how courageous I am putting on socks, going to Target, going to Disneyland, and even going potty all by myself.

 

There really are some inspirational stories out there, and a bride working non-stop and figuring out any way possible to walk down the aisle is one of them.  That still does not make it news, and what was once a really good story was swiftly turned into inspiration porn by AB commentary on the clip I watch.

 

Congratulations on both your wedding and your achievement to the woman in Ohio!

 

To the rest of the world, before you retweet or reblog an image of a person with a disability doing something that average able bodied people can easily do, think about why you want to share it (and whether the PWD even knows the photo is out there).  Are you sharing it because it is something actually awesome (wheelchair surfers, a Little Person who is a NICU pediatric specialist, I’ve even seen someone skydive in a wheelchair!), or because it makes YOU feel better?  

 

I am not a Hallmark card, and I am not here to make you feel better about yourself.

Are You “Enough?”

People love labels.  We love to put things, and people, into boxes so that we understand everything and no one is ever uncomfortable or has to think for themselves.  We are just now beginning to understand how all of human experience is a spectrum.  

 

One label, one box that few people ever think of is that of disability.  For certain things – things for which there are limits and laws written, like disabled parking spaces, someone qualified like a doctor decides if the person meets certain criteria (i.e. can that person walk unassisted 200 feet).  But for most of the world of disability, a person must chose their own label.  (Yes, I know it is grammatically incorrect, I am trying to avoid gender pronouns – get used to me doing this).  It took me years after I was granted a disabled parking spot before I thought of myself as “disabled.”

 

The problem is, to many both outside and inside the disability community, I may not be “disabled enough.”  I can walk short distances, though with aid, but I use a wheelchair in daily life.  I get people arguing with me about my wheelchair use, saying that since I can walk at all, I should always do so, and I am therefore not disabled “enough” to call myself that.

 

I met with a wonderful woman in Disneyland this weekend who has had much of the same problem.  She has hearing loss, signs fluently, but can hear a little (not sure how much or how well) and can speak to communicate when she needs to.  So, is she deaf or hard of hearing (HoH)?  Who gets to decide?  The Deaf community often rejects her, she told me, because her hearing loss is not complete and she speaks quite well.  Nor is she part of the hearing world – she still needs ASL whenever possible and this is her primary language of communication.

 

If the Disability Community and/or the Deaf Community is going to survive and thrive, especially as modern technology like Cochlear Implants and better surgeries progress, we need to learn to accept the fact that (within reason) people need to be allowed to self-identify.

 

Self Identify.  It is a difficult concept for many, but in reality what that means is that if a person says they are disabled, then we must accept them as such.  Obviously there will always be people who are either looking for a way to abuse the system or join a group they have no real tie to.  For example, I am learning ASL, and my genetic condition has been known to cause random and sudden hearing loss.  This means that I may have a link to the Deaf community, but I am not actually deaf, and it would be inappropriate to say so.

 

One of the best example of this idea of self-identity I saw was in a small ASL group where families of deaf and hard of hearing children, as well as a few of us who want to learn ASL for other reasons).  Our teacher was totally deaf since birth.  I already knew a fair amount of ASL, but I needed practice in conversation.  We were going around the table, introducing ourselves, either finger-spelling or writing our names and saying if we were hearing, deaf, or hard of hearing.  I noticed that one family introduced their daughter (a teenager) as hard of hearing, but later she introduced herself to the teacher in fluent ASL (which her family did not know) as Deaf.

 

She is Deaf.  It does not matter if she speaks (she does, though you can tell she is deaf), or maybe can hear a little bit with her hearing aids.  She is Deaf.  And SHE is the one who gets to decide that.

 

I am disabled.  I do not have a diagnosis which makes for automatic acceptance into the Disability Community (that is, I do not have a traumatic spinal cord injury) – and this is true both within the community and outside it.  I have to explain to random strangers and even doctors why I use my wheelchair.  Yes, I can walk a little, but if I ever want to leave my house, I need to use my wheelchair.  And people need to get over that.  

If we are ever going to be able to form a cohesive community, which I believe is the only way to change culture to be more accepting of disability and to give ourselves a voice, we need to stop asking if a person is “enough” to be one of us.  Only that person can decide if they are disabled.  Not as a medical condition, but as an identity.

 

I fought for a long time, and constantly felt the need to explain that I really do need the chair, I really do have health problems.  Not anymore – I use a wheelchair.  I am Disabled.  Just like the woman I met in Disney – if she is identifies as Deaf, then she is, regardless of any residual hearing abilities.

 

So, from now on, I will be adopting a new way of writing, borrowed from a convention the Deaf community uses.  When one is speaking about deafness as a medical condition, a lowercase “d” is used: deaf.  When one is speaking about the community or the identity, an uppercase “D” is used: Deaf.  In this blog, I will do the same thing:  when talking about medical disability, I will use the lowercase.  But it is important to begin to recognize Disability as an identity, and that deserves an uppercase letter.

 

I am not only disabled, I am Disabled.  And only I get to decide whether I am Disabled.  If we keep fighting with ourselves, how will we ever accomplish anything in the rest of the world,  It is time to stop asking if a person is “disabled enough” or “deaf enough” or whatever.  

 

Others already see those of us with disabilities as lesser – do we really want to do the same thing to ourselves?

I am trying very hard in my life right now to remove negative elements and thought patterns.  Part of it is work with my therapist, part of it is just me changing me reactions.  It is a day-by-day process, but I am getting there.  Within the last year, I let the negative consume me (starting with the trauma of surgery complications and going downhill from there).  Though I have always been sarcastic and snarky by nature, and always will be, that should not be the only face I show to the world.

 

Some people, however, deserve snark and embarrassment.

 

I am a Disney lover, and I am at Disneyland several days a week, and even got married in Disney World.  Last week I was getting ready to board “It’s a Small World.”  It is my friend’s favorite (and though my sister hates it, I don’t mind), so we made sure to ride it.  They have a wheelchair accessible boat (rather cleverly done), so I did not make the transfer.  When the wheelchair boat came into the loading area, there was a boy, maybe 5-7 years old, in a rather awesome Colours wheelchair.  He also had a NG feeding tube (though most people probably assumed it was oxygen).  And he was just a little boy – he was happy and probably on vacation with his family before schools starts.

 

A woman who was part of a party also using the accessible entrance (the other way involves stairs – I have no idea who in the party had a disability or what it was) saw him getting off the boat and her face immediately transformed into one of immense pity for the boy (and perhaps his family).  She looked down at him and said “Oh, that’s so sad.”  Luckily, there was no evidence that the boy heard it.

 

I, however, did.  And as I rolled past her family to board the boat I stopped, looked up at her and said, “Actually he looked quite happy to me.”  And I said it loud enough for her whole family and the surrounding Cast Members to hear.  And I meant it.

 

There was nothing “sad” about the boy.  While this may seem a minimally offensive statement to most, it is ableism at it’s finest, and most common form: automatic pity.  Yes, that boy and I and others after me in the park that day used wheelchairs.  And none of us want pity.  None of us are sad – at least not until a statement like that makes us feel lesser.  Later that day I met another wheelchair user who definitely would not have wanted the pity – a woman with an amazing voice who performs in the Aladdin show in Disney California Adventure who was Ms. Wheelchair California 2010.  

 

Just because we require wheels to get around does not make us “sad.”  We are not sad.  We are not pitiful.  And while some forms of ableism are readily apparent or more obvious, like being turned down for a job because of disability, others are not.  And it is these little daily statements that are not only more insidious, they are the more damaging.

 

So while I am trying to remove negative elements from my life, and change behavioral traits – I will not allow such offensive, ableist comments to go unanswered.  Because I am not sad, I am not helpless, I am not without any abilities because of my disability, and I will not let people make me, or others, feel that way.  

Insidious Ableism

What’s in a Name?

What is in a name?  When it comes to identifying as disabled, a name is quite a big thing.  For years, being disabled meant that you had “given in,” “given up to your disease,” were weak, lesser, sometimes barely even human.  If I look up “disabled” in a thesaurus, here is the list of words I get, from Thesaurus.com:

handicapped, infirm, paralyzed,

weakened, wounded, confined,

disarmed, hamstrung, hurt,

lame, maimed, sidelined,

stalled, wrecked, broken down,

decrepit, helpless, incapable,

laid up, out of action, out of commission,

powerless, rundown, worn out…

 

Look at some of those words.   It is easy to see why shame and stigma have been attached to the word “disabled” or “disability” for centuries.  Especially in America, the land of dreams, where you “pull yourself up by your bootstraps,” full of “self made men,” being wrecked, incapable, helpless – no one would want that.  I am not incapable.  I am not helpless.  

 

One word which did not make this list but is an older term for disabled is invalid.  We pronounce it IN-valid, with the emphasis on the first syllable.  But stop and look at the word.  In-valid.  Not-valid.  For decades, we were classified as not valid.  Not real, not acceptable, not correct.  Invalid.  I still hear people say it today – and it is terrifying when I hear someone not of my grandparent’s generation saying it.  I just heard a main character in Law & Order: SVU say it in an episode and I was shocked.  How can a person be not valid?

 

And then the 90’s happened, and we became introduced to Political Correctness.  Don’t get me wrong.  Generally, I prefer PC terms.  But this is when people with disabilities were given all kinds of new names, ones without shame.  We became differently abled, special needs, exceptional, special, challenged, and my personal favorite, handi-capable.

 

I am not now, nor have I ever been “handi-capable.”  Most of these terms were given to us by people outside community, people who did not have a disability, but wanted to make us feel better about ourselves.  I do not need made up or repurposed words to make me feel better about myself.  

 

I am disabled.  I have a disability.  I am a person with a disability.  Person first language is critical, and I try to use it as much as possible, especially when speaking about others or the community as a whole.  (My reasons for stressing person first language will have to wait for another blog post)  But, when speaking about myself I will say I am disabled, I have a disability, I am a person with a disability.

 

There.  I said it.  The big “D.”  Whenever there are events aimed at the Disability Community, people always feel the need to come up with a way to avoid saying “disability.”  That is how we have the Abilities Expo, Independence Expos, forums on a Disney chat board called disABILITIES.  We have become afraid of the word disability, and even within the Community there is still stigma attached to it.  

 

Well, I have decided I am just going to use the word that best describes me.  I have a disability.  There are things the average human being can do, like walk on a reliable basis, that I cannot do.  It is an ability I do not have, therefore a disability.

 

I am not differently abled – I do not possess super powers.  The X-Men are differently abled.  I like to think I am “special” and “exceptional” – but let’s face it, those are truly pedantic and demeaning words in most situations.  I think I am exceptional due to my intellectual ability, academic achievements, love of my kitty, but none of those have a thing to do with my disability.

 

And handi-capable just pisses me off.  Sorry, but it does.  First off, it is a derivative of the word handicapped, which is generally not accepted as Politically Correct anymore.  And secondly, really?  A made up word, just do people do not have to feel squeamish about admitting that a person really does have a medical condition or injury that renders them unable to do something that average human beings do.  I am not handi-capable because I need my wheelchair – I am disabled.  I am also of above average intelligence and do not need made up words to deal with my own body.

 

And let’s face it – that is where all these words come from – people are uncomfortable about the differences in our bodies and how we adapt to the world around us, so words were chosen or even made up to make other people more comfortable.   We, as people with disabilities, need to own our bodies.  We may not always like them, and at times we are even at war with out own bodies.  But they are still ours, still there, and not going anywhere.  I am particularly annoyed with my body today as I had things planned that I needed to do, but my body decided I needed to spend the whole day lying down.  

 

Many of us with disabilities know our bodies even more than the average person – we need to – we need to know medical terms and details we wish we could ignore.  And that difference makes people around us uncomfortable.   There are myriad ways to change this, but let us at least start with owning the accurate term for what we are: disabled.  I am disabled.  And if someone else is uncomfortable with that, fine, but please do not give me some pedantic name to make yourself feel better.

 

The term special needs is more difficult.  There are many people who have special needs who do not cross over into the realm of disability.  For example, a person with food allergies has special needs, but those allergies are generally not disabling.  A person can be both disabled and have special needs.  

 

The point, though, is self identification and the respecting of that by others.  There is a long history of oppressed, marginalized, or otherwise excluded groups taking terms which may once have been negative and making them a mark of pride.  I do this very thing when I identify as queer, a word which was once despised by many in the LGBT community.  So, for those of us with a disability, those of us who are disabled, it is okay to use that term.  It is definitely okay to correct someone who chooses your term, and therefore your identity, for yourself.

 

If you want to consider yourself “special needs” or even “handi-capable,” that is your choice, and there should be no judgement in that,  But do not allow people to attach the shame and stigma of those synonyms of disabled to you.  

We are not helpless, incapable, wrecked, infirm, decrepit.  We are not invalid.  We are people with disabilities.  We are the Disability Community.  And we are not ashamed.  We are proud.  

The Second Important Lesson I Learned (from Two Diagnoses I Do Not Have)

The motto of the Autism Self Advocacy Network (ASAN) is “Nothing About Us Without Us.”  This is in response to the numerous “autism” groups, and especially Austism Speaks, which generally include no board members who actually have any form of autism, and which regard autism as a terrible disease that places a horrible burden on the family affected.  The purpose of Autism Speaks focuses on supporting the families of children with autism and in finding a “cure” for this disorder. ASAN, as I understand it, promotes the acceptance of those with autism, as opposed to the stigmatization that an autism diagnosis now brings, and more importantly the inclusion of people with autism in their own advocacy.  Groups such as ASAN promote the idea that there is nothing wrong with a person with autism — that person simply different, and should be accepted as such.  All scales and measurements created by those who have never experienced being a person with autism are thrown out the window.  Terms such as “high functioning” and “low functioning” were created largely to describe how that person interacts with the world around them as compared to a neurotypical person, generally meaning how well the person with autism communicates verbally.  Additionally, any behaviors not deemed socially acceptable in neurotypical society can further stigmatize a person, such as stimming behaviors. In response to the negative stereotypes surrounding autism, in recent years especially with the assistance of the Internet, people with autism have begun creating their own community in which those traits commonly found in those on the autism spectrum, which can include anything from avoiding eye contact when speaking to extreme stimming (rocking back and forth, flapping hands, etc.), are no longer stigmatized, but simply accepted.  Yes, autism does make a person’s life more difficult in needing to interact with the world at large.  And having a child with autism, especially before the family begins to learn how to communicate with their child, can be a challenge.

But it is critical that the challenge is in dealing with the manifestations, such as communication, and not the challenge is the person herself/himself.

The second community I have learned so much from is much older than the growing autism community, and that is the Deaf Community and Deaf Culture.  Ostracized and generally sent away from home at a very young age, the Deaf Community began developing its own culture and its own ties more than 100 years ago.  Like any community, it has its own etiquette, idioms, customs, and history.  Deaf people have been banding together to support one another, and even kept their own language alive through the trials of the height of the Oralist movement.  And as with any community, there continue to be challenges, such as the introduction of cochlear implants and their impact on Deaf Society.

The important lesson that must be learned is summed up beautifully in ASAN’s motto “Nothing about Us without Us.”  Every time I read an article about disability on news sites or blog posts, it is always, always about the family of the person with a disability, and the family’s struggle to deal with their child’s disability.  Even when an article is trying to make a positive statement about disability, the struggles of the family are always included.  I was recently reading an article about a pageant for children with disabilities and not once were any of the children quoted in the article.  The only voice that was heard was that the parents.

Those of us with a disability need to begin to tell our own stories, and not just to each other.  We need to learn to insist on being included in the conversation.  I am not saying that the family of a person with a disability should be neglected, just that our voice needs to be heard too.  The TV show “Push Girls” is a good start.  But even at that TV show, we begin to run into a second difficulty: we constantly divide ourselves.

Individual organizations and groups supporting certain illnesses, disorders, diagnoses, etc. are valid and needed.  However, we allow ourselves to be divided into our individual disorders.  And so long as we divide ourselves, we remained weaker.

What people with disabilities need more than anything is to begin to develop our own community, our own Disability Culture.  Only when we join together are we strong enough to achieve goals that benefit us all, such as passing of the ADA.  People with disabilities of all types came together to lobby for that Act to be passed.  In the last 20 years we have seen great strides for people with disabilities, and their inclusion in the community at large.  But we have a long way to go.  If we continue to splinter ourselves, we will lose that strength that saw the ADA passed.

We need our own culture, our own community, because only by joining together can we prove to the rest of the world that there is nothing wrong with us.  Yes we may be disabled, a disability should be seen as a difference, just as race or sexual orientation is just a difference.  But before we can convince the rest of the world of this, we need to convince ourselves.

We are not less, we are different.

And what is more, we are proud.

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.”