This Is What Disability Binarism Looks Like

I exist on the grey area of disability, the part where things are neither black nor white.  I am neither wholly visibly disabled, nor wholly invisibly disabled.  I walk on my own, and yet, I use a wheelchair.  More people are with me in the grey area than you think.  Not everything is black and white.  And that is the core of disability binarism - the concept that things are all or nothing - you are either low-functioning or high functioning.  You're either "wheelchair bound" or you can walk.  You're either totally deaf, or you hear fine.  Get the picture?

Disability binarism p*sses me off.

[A white-presenting person with short blonde hair and wearing a loose fitting gray shirt and denim shorts stands to reach a bottle. In front of the person are several shelves of various bottles. Behind is the person's manual wheelchair. White text reads "Alcohol makes miracles happen."]

Which is why I got so angry when I saw this meme on Facebook.  My life, my reality is not a joke.  Living i the grey area is terrifying, more so than you think, precisely because of these attitudes.

This, THIS is why when I get on a bus with my scooter, I sit in it and ride, even though it's less safe, even though my scooter has tipped over on buses before. THIS is why I don't just park my scooter outside a bathroom stall and walk in. THIS is why, when I go out in public, I let people think that I'm a full-time chair user. THIS is why 99% of my college campus had no idea I can walk. Because of attitudes like this. Because of ableism like this.

The most terrifying part of all of this is it could've very well been me.  When I use my chair I stand up to reach things all the time. Not so much recently because of ableist assumptions like these - it's easier to let people believe that I can't stand or walk on my own.  I get tired of being called lazy, or having a bus driver tell me I "tricked" him.  Can I walk? Absolutely and for sheer convenience I plan to keep it that way, even if I like rolling a lot better and it allows me to do more things. But my chair allows me to go places without worrying about my energy levels. I can zip from there to here to there without so much as a second thought and I never realized how much energy I expended walking and calculating how much of that energy I could expend before I HAD. TO. SIT. DOWN until I started using a chair. Able-bodied people just throw out "walking distance" so flippantly, because they don't know what it's like to expend so much energy into just staying upright and putting one foot in front of the other and not falling in the middle of a busy city street.

So no, it's not a freaking miracle. It's a freaking person wanting to get a freaking drink, and if you're a decent person, if you see me standing up and struggling to reach something in a store, you'll ask if I need help and if you can get something for me. If I say "no, I got it", you need to respect that and walk away, but chances are I will be grateful that I don't have to do the complicated dance of motor movements that is parking my chair in a spot that's not blocking anything or annoying other people, turning my chair off, unbuckling my seatbelt, making SURE my chair is off (because I roll around at top speed and crashing into store displays generally makes employees very annoyed with me), standing up (which may or may not involve adjusting pieces of my chair so that I have room to stand up), grabbing what I want and bringing it down without knocking anything else off the shelf, and sitting back down.

Don't delude yourselves into thinking that this kind of ableism doesn't happen or that it's not harmful. It has happened to me.  More than once.  And when it's being perpetuated by people who have the power to determine where your future goes....that's scary.  Wheelchair users are not all the same, and more wheelchair users can walk than you think. Don't make assumptions and don't gawk at me like I'm fricking Jesus when all I want to do is shop like a PERSON.

This could've happened to me.  Who knows?  Maybe somewhere on the Internet it already has.  Maybe I slipped once in public - broke character for just a second and stood up to reach something or walk a few feet.  Maybe somewhere there's an image going around with MY face, MY chair.  And that is something I dearly hope I never see.  But that person in that photo is a human being, and that human being could've been me.  Laughing-fricking-stock of the Internet.

Will you remember that, next time you get the urge to laugh at one of these oh-so-funny memes?  I sure hope so.  Because next time, it might be me.

To Parents of Children With Cerebral Palsy

Dear parents of children with cerebral palsy:

Your child with CP may not ever walk.

They may not ever talk.

And that's okay.  Because your child will be able to:

• Communicate in whatever way they can
• Move around their environment in whatever way is best for them (which may change at times)
• Learn many things, both inside and outside the classroom
• Appreciate the smaller victories in life
• Develop a unique personality and identity, just like any other child
• Whine, complain and cry, just like any other child
• Have a mind that thinks, just like anyone else
• Find friends that enjoy their company, whether disabled or not
• Love deeply and express that love in some fashion

And if you play your cards right, they might just gain the most important ability of all:  the ability to accept themselves precisely as they are.  But that won't happen unless you, too, accept them.  Cerebral palsy, like it or not, is a part of your child's being, part of their fundamental makeup.  Your child would not be your child without CP.  There is no cure, no procedure, that will neatly strip away the disability from your child - they are intertwined.  Behavior is learned.  Your child will follow your example in this, as in many things.  If you accept and embrace cerebral palsy as part of the rich mosaic that makes your child your child, they will follow suit.  And someday, when they do have insecurities about the way they are, they will know that they can come to you and you will tell them that is okay to be different.  

Your child may not ever find pride in their being, but this is one area where your help makes all the difference.  Please, parents, I am appealing to you now, to help your child overcome shame, overcome discrimination, and instill acceptance and pride.  They will thank you for it someday.  I promise.

Signed,

An Adult with Cerebral Palsy

Who Used to Be a Child with Cerebral Palsy

Who Thanks Her Parents For Accepting Her Just the Way She Is

Am I Fucking Crippled Enough For You Now?

All my life I've been told I'm not crippled enough.  No, you can't have a wheelchair that's paid for by insurance, because you can walk.  No, we won't set you up with vocational rehab before high school like we're supposed to because you're smart and besides, what can voc rehab really do for you anyway?  You need to stand up and teach, because you can, never mind how hard it is, because they won't respect you, you know, if your butt is in a chair.

Well let me tell you something.  I use four different mobility aids, and all of them my parents had to pay for out of pocket, except the one that was paid for by a charity, because I'm not fucking crippled enough for insurance to pay for them.  They say I'm not crippled enough even though I can't walk much beyond my front porch without being terrified that I'll fall on my face, and only a bit past that without collapsing in heap of exhaustion and pain.  They say I’m not crippled enough because it doesn’t matter if I need those things to go to school or get a job someday, because don’t you know, cripples aren’t supposed to leave their houses.  They’re not supposed to live a life.

You know those statistics they always quote; about how expensive it is to raise a kid like me?  Yeah, they’re all true. But that’s not my fault, and it’s not a reason to commit genocide and wipe out an entire group of people before they even exist.  If those statistics tell you anything, it should tell you that we’re failing.  As a society, we are failing to provide those inalienable rights; life, liberty and the pursuit of happiness.  Because those pesky little rights are only for the privileged in this day and age.  Who are you to tell me that I don’t deserve those rights?

I’m not a patient person by nature, and I’m sure it’s made worse by this age of instant gratification in the form of microwaves and iPhones and information just a click away.  I will not – I cannot – wait while some unknown agency decides my fate, decides whether or not I’m worthy, whether or not I deserve the rights and privileges that able-bodied people take for granted.  I need those rights now, not months or years from now.  In an ideal world, I would have had a power wheelchair with power recline and possibly tilt years ago, complete with a button that shrunk it so I could put it in the car, any car, or carry it in my purse when I’m walking only to whip it out when I need it, anywhere, anytime.  But this is not an ideal world.

Is it any wonder I want to live in the Harry Potter universe?  Surely in this fictional, magical world, they’re less cruel to people like me.  Even if they’re not, magic would certainly make things easier.  Doesn’t that tell you something?  That our society is so flawed that I’m begging to live in a fictional universe just so I can live.  I’m alive, but without a wheelchair, without my walker, without my cane, I am not living.  If there is a God, he (or she!) should be ashamed of this world he has created. 

(I don’t, actually, believe in a God, and this is one of the reasons why.  But my atheist musings can be saved for another post.)

Am I fucking crippled enough for you now?  Have I crossed some arbitrary line, separating the true cripples from the fake cripples?  I don’t know what I have to do to prove myself to you.  And I refuse to play your game.  Someday, playing your game may be necessary for my survival, and I will cross that bridge when I come to it.  But for now, I am lucky that I have family who, though they can’t really afford it, will sacrifice and scrounge to get me what I need.   I am declaring that I am crippled enough, and that’s not going by anyone’s standards but my own.  I am a fucking cripple and I am fucking proud.  

Why I Am Against Autism Speaks

I was criticized yesterday for wanting an organization I have been heavily involved in for four years to join in on the twitter bomb against Autism Speaks.  I was told that, from an organizational standpoint, it would better to promote something, to be FOR rather than against something.

Well, from an organizational standpoint, there are many organizations that have signed onto the Autistic Self Advocacy Network's Letter to the Sponsors of Autism Speaks, that are publicly against Autism Speaks.  Those organizations include, but are not limited to, huge organizations like TASH, Not Dead Yet, and Little People of America.  Those organizations seem to be doing pretty well for themselves, as is ASAN itself.

Still worried that we should be FOR things, rather than against them?

Get this:

You know what I'm for?

I'm for dignity.

I'm for human rights.

I'm for language that doesn't reduce autistic people to one dimensional caricatures in perpetual suffering.

I'm for celebrating diversity.  I'm for embracing disability as a natural part of the human condition.

I'm for putting disabled people in positions of power, real power.

I'm for equality, not tragedy.

I'm for expressing yourself any way you like, whether that's talking, writing, stimming, or any other way you can think of.

I'm for communication, in any form, being encouraged, not demonized.

I'm for organizations that build us up, not tear us down.

Autism Speaks is for none of those things.  And that is exactly why I am against Autism Speaks.

If you are FOR humanity, you will be AGAINST Autism Speaks.

Join the boycott.  Sign the petition.  Spread the word.

Anatomy of a Depression Episode

What follows is a description of a depression episode as I experience it.  This was written on the tail end of an episode very late at night.  With a few changes, it is exactly as I wrote it during that depression episode.  It is important to note that this is not how everyone experiences depression - my depression is intertwined with anxiety, which complicates things.  As they say on TV, your mileage may vary.  The content below can be very triggering, so read carefully.  I am putting the rest under a read more cut for this reason.

Why I Can No Longer Fully Support the Social Model

I am tired of feeling ashamed to be disabled.

Or not disabled, really, the social model makes that distinction.  I am ashamed to be impaired.

Disability, in a nutshell, is what society imposes on you.  Impairment is the biological condition that causes society to disable you in the first place.

Here's the thing:  Not everyone who is considered disabled by society has an impairment that can be defined by the ADA as "substantially limit[ing] one or more major life activities".  Say, someone who has dwarfism without any associated conditions - just the short stature.  Dwarfism is considered a medical condition and those with dwarfism are frequently discriminated against because the environment isn't built for them - just as it is not built for someone who uses a wheelchair.  If society was simply more accommodating, little people could go about their days exactly the same as someone of average height.

That doesn't work for me.  Not everyone who is disabled has an ADA-definable impairment - but I do.  Several of them, in fact.  And I'm tired of feeling shamed.

Sure, if society was more accommodating, my life would be 90% easier.  But there's still that other 10%.  I would still have chronic pain and fatigue.  I would still be unable to walk distances.  I would still have crippling, yes crippling, anxiety that grabs me in a vice grip and doesn't let go.  I would still have depression that sends me into a fetal position, sobbing and loathing myself.

If society was more accommodating, if ableism didn't exist, I would be able to obtain a power wheelchair easily with features that could mitigate the chronic pain and fatigue.  I would be able to go anywhere I liked with that wheelchair without a second thought, including on and off public transportation.  I would be able to be open about my mental illnesses and my medication without fear of repercussions.  I would be allowed to do things my way, without being told that this is normal and I must do everything in the normal box or not do it at all.

But it would not erase my pain, my fatigue, my panic, my depression.  And I'm tired of feeling ashamed for that 10% of me that will never be able to do the "normal" things, even in a different way.  I'm tired of social model activists acting like if we fix the world, everything will be peachy keen.  I'm tired of being told that the reality of someone who is solely disabled by structural barriers is anywhere close to mine.  I'm tired of my own internal battle, walking the fine line between cure and treating the parts of my impairments that make my life miserable.  I'm tired of feeling like a bad crip for wanting my mental illnesses to go away and never return. I'm tired of not fitting anyone's idea of what disability should be.

And so I can no longer support the social model of disability.  Because though it is a good theory, though I have subscribed to it for as long as I've known what it was, it is not enough for me.  It no longer fits my reality, as so many things have changed with my body and my disabilities over the years since I first discovered the social model.  The radical model - though I identify with many of its values - is not for me either.  Some impairments may be socially constructed - and there's a lot to be said with that about the medical profession and diagnoses - but mine is not.  I am still impaired.  I will always be impaired.  And no amount of societal rearranging is going to change that.

I don't know what model I subscribe to, now.  I feel a bit adrift without a model to cling to.  Maybe I'll create my own, though I have no idea what it would say.  But the fact of the matter, my life does not fit into a neat box, whether that box is models of disability or disability itself.  If and when I can somehow come up with a model I can support, I will let you know.

Until then, I am an outsider, an activist with her own rules.....and you should probably watch out.

No, It Is Not Okay To Grieve (Because Nobody Died)

Parents of children with disabilities are often told, when their child is first diagnosed with a disability, that it is okay to grieve the loss of a "normal child".  I've even seen it taken a step further, with suggestions that parents of children with disabilities go through the same five stages of grief that people go through when someone dies - denial, anger, bargaining, depression and finally acceptance.

I take serious issue with this terminology.  First and foremost, because nobody died.  Despite what mainstream media and organizations may say to the contrary, your child is still alive and (most likely) thriving, just in a different way than you expected.  Equating disability to death and using the exact same scientific grief scale implies that those two are one and the same, equally horrible outcomes and that people should and will react to a disability diagnosis the same way they will react to a death.

To be clear, I'm not talking about parents whose children suddenly acquire a disability.  That's a whole other can of worms.  It's different in that situation, because there is a normal child to grieve.  And though it's true that no one died in the traditional sense, that child will never be the same.  Their nondisabled self, for all intents and purposes, is dead.  And it doesn't make their life any less worth living, but it does radically change things.  They already had an established life, a nondisabled life, and now they have a completely different life, a new life.  So in that circumstance, I think it's acceptable to grieve.  But for disabilities that are present from birth or very shortly after, like Down Syndrome, or cerebral palsy, or autism, there was never a "normal child".  This is your child's default setting.  This is the way your child always has been and always will be.  Grieving for a "normal child" implies that there was a "normal child" to begin with - and with a lot of disabilities, that's simply not true.

When you decide to have a child, by whatever method you choose, you are not choosing to have a nondisabled child.  Even adoption is not foolproof - there may be a disability that is not apparent just yet.  There are no conditions you can invoke so that you can avoid the dreaded disability. You are choosing to have a CHILD, period.  If your child has a disability, don't get upset because you didn't get what you wanted.  Your child is not a restaurant meal - you cannot say to whatever babymaking deities you believe in, "I didn't order this" and return it to the kitchen.  You have to go along for the ride - for better or worse.  Grieving a "perfect" child that never existed will do neither you nor your child any good.

What are we telling disabled people when we tell them that their parents grieved as though there was a death?  What are we telling them when this process is actively encouraged as a form of catharsis?  Is it any wonder that Tim Bowers chose to end his life one day after learning that he would be permanently paralyzed?  In our society, disability is a fate worse than death, and disabled people are living ghosts.

I don't want to be a ghost.  I want to be a person.

If you're a parent, and you've felt that grief, it doesn't mean you're a bad parent, either.  But it does mean that you need to think critically about why you felt that grief.  What did you know of disability before your child was diagnosed?  What are the portrayals of disability you've seen in the media?  When the doctors told you, what did they say?  Did their tone convey solemnity, as if telling you of a loved one's death?  Were they afraid to say the words?  All that and more contributes to the idea of disability you form.  Ideas, as any sociologist worth their salt knows, do not exist in a vacuum.  They are influenced and shaped by everything around us.  Take a step back and learn from your children, who are undoubtedly still happy, despite the Big Bad Disability.  Remember that disability is not a deficit or a cruel twist of fate - it simply is.

To parents, I say - it's okay to be sad.  Sad that your child will face a more difficult path than most.  Sad that the world may never see them as full human beings.  But it's not okay to grieve.  Because nobody died.

This Is the Week Autism Speaks Meets Its Downfall

"If three million children in America one day went missing – what would we as a country do?"

What would we do if three million people in the United States were being told that they are missing?

Missing from where, I'm not sure.  Missing implies that there is a place that they are supposed to be.  Missing implies that something is lost.  The remote control can go missing.  The umbrella you left in a taxi can go missing.  But people who are living and thriving and loved, people who have their own agency, people who are exactly where they want to be - they can't go missing.

"And, what about their parents? How much can we ask them to handle? How long will it be before the exhaustion makes them ill? How long before they break?
And, if they do – who cares for these children?
There is no national plan to build a city for 500-thousand people."

Somehow, we have fallen into a time warp and have been whisked away, back to the days where leprosy was feared above all else, and leper colonies were set up on remote islands.

Except it's not leprosy anymore.  It's autism.

Scared yet?

"...we’ve for the most part lost touch with three million American children..."

No, Autism Speaks.  NO.  YOU have lost touch with millions of American children - AND adults.  I'm really not convinced that you were ever in touch with them in the first place.  You have repeatedly failed to listen to what THEY want, what they need, as opposed to what you think they need.  The images portrayed in your media - of stolen children, burdened by a grave illness - is not their reality.  It's not MY reality, as a friend to many Autistics.  Your words are not just insulting.  They're not just untrue.  They're terrifying.  And if there is someone out there reading this who is not scared of Autism Speaks, I suggest you read...and reconsider.

These families are not living.

Oh really?  Because I see living everywhere that I look.  Spinning, stimming, dancing, singing, flapping - that's all living, despite your statements to the contrary.  Autistic people are living.  Family members of autistic people are living. And they are all living with the knowledge that diversity is rich and beautiful.  That autism may present some struggles but the far more pressing problem is the attitude that an autistic life is not a life.  An attitude that you have perpetuated again, and again, and again.

Autism Speaks, you have made a grave error in judgment.  Your words intended to invoke terror have backfired.  Because we're terrified, all right.  But not of autism - of you.  You have the money and the power to shape the views of every American and you are using it to advocate segregation and genocide.

But your power is waning.  People are breaking out of the hypnotic haze you have put them in.  Self advocates and parents who were once bitter enemies are united now, in calling for your destruction.  John Elder Robison, the only Autistic to ever have some sort of role in your organization, has resigned.  You now cannot claim to have any Autistic representation in your organization at all.  The world has shifted on its axis as more and more people rally against you.

This week is the week America will fully wake up to the autism crisis.

This is the week America will fully wake up to the Autism Speaks crisis.  Guess what?  They already have.  This is the week you meet your downfall and I couldn't be happier.  The times, they are a'changin - and you better get with the program or else you'll be left behind. 

An Open Letter to the Staff of the Long Island Doctor Who Convention

To Ken Depp and the Long Island Doctor Who Staff,

During the weekend of November 8th - 10th, 2013, I was thrilled to attend the Long Island Doctor Who convention at the Clarion Hotel and Convention Center Ronkonkoma.  As an avid Whovian, I was eager to go to my first convention and meet like-minded people.

I was not prepared to find that the convention was inaccessible to me.

I was born with cerebral palsy, a disability which impedes my mobility and causes chronic fatigue and pain.  I also have an anxiety disorder which, in addition to generalized anxiety, manifests itself with panic attacks.

My friend Meg (who also has cerebral palsy) and I took the Long Island Railroad to the Ronkonkoma station early Saturday morning.  We planned to meet up with our friend Oscar there and take advantage of the courtesy shuttle to the convention site.  But when we arrived, we discovered that Oscar had been sitting in the cold, watching as the shuttle pulled up and pulled away multiple times.  Oscar uses a power wheelchair and the shuttle, despite statements to the contrary on the convention website and in the convention program booklet, was not wheelchair accessible - a direct violation of the Americans with Disabilities Act.  The shuttle van had three small steps and no ramp or lift.  Upon hearing of the situation, the shuttle driver spoke to his supervisor, who suggested that Oscar take a medical transport to the convention for $85.  This suggestion is ludicrous and insulting.  Besides the fact that segregated transportation is inherently unequal, a perfectly healthy wheelchair user should not have to utilize a medical transport which could be better served transporting people who are actually in need of medical assistance in order to get to an event.  In addition, it is blatant discrimination to have a disabled person pay $85 (which, incidentally, costs ten dollars more than a three-day pass to the convention) for transportation when able-bodied people receive transportation free.

Because Meg and I are capable of climbing steps with assistance and our walkers folded enough to fit in the van’s trunk, we were granted access to the shuttle and the rest of the convention.  Oscar was not.  Faced with no other option for getting to the convention, he was forced to turn back and head home, wasting the money he had spent on a convention ticket.

We arrived at the convention to find the “Disability Services” desk mysteriously unmanned.  The people at the general information desk seemed puzzled that the shuttle had not been accessible and said there must have been a miscommunication.  They assured us that something would be done.  To my knowledge, nothing was done and no formal apology was issued.  The “Disability Services” desk remained unmanned throughout the entire time we were at the convention.

The convention venue itself was physically inaccessible.  There were many heavy doors separating hallways from each other that were difficult for someone with limited strength to open, let alone navigate a mobility aid through.  The rooms where the panels and events were held were crowded with chairs, leaving only narrow space for people to walk.  Meg and I constantly were pushing through, trying to make space for our walkers.  There were no spaces in the panel rooms for someone using a wheelchair to sit, if they could even fit into the room in the first place.  I began to feel like my walker and I were a nuisance, a bulky apparatus clogging up the hallways and small rooms.

On Sunday afternoon, Meg and I spent some time in the Vendor’s Room on the lower level.  While attempting to get back to the elevator, we were caught in a crush of people moving from Panel A to Panel B, as well as people streaming in and out of the Vendor’s Room.  The artist tables set up in the hallway drastically narrowed the already limited space, once again making it difficult for Meg and I to navigate with our walkers.  Surrounded by people, I began to panic.  I was gasping for air and extremely dizzy.  We made our way back up to the lobby, where Meg explained to the woman at the information desk that her friend was having a panic attack and asked if there was a quiet room away from people where I could calm down.  The woman seemed confused and said that no, there was not.  We ended up sitting in an empty hallway until I felt like I could breathe again.

Many conferences have a designated “Quiet Room”, where people who are feeling overwhelmed can go to relax and calm down.  Given the amount of rooms at the Clarion Hotel, it would not have been difficult at all to orchestrate a quiet room from the beginning or at the very least have your staff find and open up a room when they were told that it was needed.  None of these things were done.

When I go to an event, I expect to feel valued, as a paying attendee.  I did not feel that I, as a person with multiple disabilities, was respected or valued at your convention.  I know that Long Island Doctor Who 2 has already been scheduled at the same venue.  I fear that the same inaccessibility will result.  Because of these concerns and my negative experiences at Long Island Doctor Who, you will not be receiving my money next year.  I refuse to support and attend a convention that held my needs in such low regard.

The Doctor says that he’s never met anyone who wasn’t important.  But your convention and apathy towards accessibility made me feel like my fellow disabled Whovians and I were not important enough to be worth considering.  I am saddened and disgusted that a convention representing such a diverse fandom failed to include people with disabilities.

I would be happy to discuss accessibility further with you and help to ensure that Long Island Doctor Who 2 is more inclusive.  You can reach me at caraliebowitz@gmail.com.  I sincerely hope that accessibility will now become a priority.

Sincerely,

Cara Liebowitz

With input from:

Meghan Mertens

Oscar Ortega

Strong (Disabled) Female Characters

I recently came across an article entitled "I hate Strong Female Characters".  The article argued that "Strong Female Characters" are often one-dimensional, thrown in there purely to prove that we as a society have moved beyond the damsel in distress trope, a mere distraction from the real (male) characters.

Though I found myself nodding along and agreeing as I read the article, something concerns me.  Though I certainly agree that Strong Female Characters are a stereotype unto themselves and we need more realistic female representation in movies, books, and TV, I can't help but beg for a Strong Female Character who is also disabled.

This is the problem with mainstream feminism.  Mainstream feminists advocate for more realistic female characters, a noble goal for sure, but they conveniently forget that we're begging for any disabled characters at all, especially disabled female characters.  A strong disabled female character would be a dream come true.

Even throughout history, disabled women's stories have been tweaked and manipulated to cast them in the weakest possible light, poor helpless creatures who need to be rescued from the plight of disability. Think of Helen Keller.  The mainstream narrative casts Annie Sullivan as the heroine who rescued Keller from the depths of darkness and silence.  Helen is given virtually no agency of her own.  Almost no one knows that Keller was a radical socialist and a fierce activist.  And it is never mentioned that Sullivan herself was a disabled person, with poor eyesight from glaucoma that progressed as she got older.  When disabled women who have played a prominent role in the disability rights movement, like Judy Heumann or Nadina LaSpina, are mentioned, they are usually unheard of.

Most female disabled characters in fiction are one-offs, created and utilized solely for a Very Special Episode about disability.  Those with any sort of recurrence at all are often painted with the damsel in distress brush that has plagued nondisabled female characters for decades, sometimes even centuries.  Clara from the classic novel Heidi is described as an "invalid", "confined to her rolling-chair".  Heidi is sought specifically as a "companion" for Clara, because obviously there's no way Clara can have an honest to god friend.   It is implied that Clara focuses on her studies because she is unable to leave the house.  Heidi, instead of simply accepting Clara for who she is, disability and all, teaches her to walk, the feel-good moment of the novel.  She is the heroine for helping Clara "overcome" her disability.

Nessarose from Wicked (both the book and musical adaptation) is another good example of this, demonstrating how this mindset has spanned into the modern times.  Nessa is always having to be cared for, by her grandmother in the novel and later by Elphaba, especially in the musical.  In "What Is This Feeling", Elphaba sings "But of course I'll care for Nessa!" Nessa has no drive, no personality of her own, and she never does things for anyone else - she is constantly being done unto.  Boq is convinced to ask her to the dance out of pure pity - it doesn't matter what she wants.  Only when Nessarose obtains the ruby slippers that allow her to walk does she have any sort of agency or goals.  These two examples seem to suggest that it is impossible for disability and strong will to coexist - once disability is out of the picture, the character comes into their own and becomes a proper person.

And then we have Toph Beifong, from Avatar: The Last Airbender.  Toph can be described as your stereotypical Strong Female Character - she's a gritty tomboy who flings sarcastic one-liners as often as she flings rocks - which, if you think about it, is representative of the way she was written.  She has all the usual qualities of a man, including being the Avatar world's equivalent of a professional wrestler.  In fact, Aang and the gang are shocked to find that the Blind Bandit is not only, well, blind, she's also a girl.  She looks like a boy, acts like a boy, talks like a boy.  She serves as a foil to the more reserved, feminine girl of the group, Katara.  It's almost as if the writers wrote her as a boy first, then hurriedly changed her gender when they realized there was only one recurring female character in the show.  Oh, look, they did!

But when it comes to the star of the show, that is undoubtedly Aang.  Toph backs out of the way for the male character to save the day.  Typical of a Strong Female Character, who can't seem to save the day all by herself (though Toph does cross that boundary several times in the show, most notably when she escapes from her kidnappers by inventing metalbending).  Despite all that, I have a deep undying love for Toph Beifong.  Why?  Because her disability is just one of the things that make up who Toph is.  She's witty and wonderful and caring underneath her gruff exterior.  Her blindness isn't ignored and there are still ways it limits her, even with her ability to "see" with her feet.  She is still disabled, and her earthbending does not negate that.  It aids her, much like a crutch assists someone to walk, but it does not magically cure her disability.

Though Toph has her flaws, she's the one of the best representations of disability on TV that I've ever seen.  That's the type of disabled character we need - someone whose disability is just another part of their identity.  Of course, it would be incredible if we could get a female disabled character who breaks out of multiple stereotypes, but lets face it, we have about as much chance of that happening in the near future as we do of having a female, disabled character of color anytime soon.  I have to settle for what I can get, unfortunately.  It shouldn't be that way, but it is.

So I'll take a disabled Strong Female Character.  Until and unless we get more Toph Beifongs on our screens, I cannot, in good conscience, demonize Strong Female Characters who are perpetually nondisabled.

Disabled Is Not An Insult

"Eh?" said Hagrid blankly.  "No, don' go!  I've - I've never met another one before!"
"Anuzzer what, precisely?" said Madame Maxime, her tone icy.
"Another half-giant, o'course!" said Hagrid.
"'Ow dare you" shrieked Madame Maxime.  "I 'ave never been more insulted in my life!  'Alf giant?  Moi?  I 'ave - I 'ave big bones!"

-Excerpted from Harry Potter and the Goblet of Fire by J.K Rowling (pgs 428 - 429 in the printed version)

Poor Hagrid.  He's desperately trying to find community, just as I have on so many occasions.  He knows that he's finally met someone like him.  I know that feeling, that wonderful feeling of sameness, of solidarity. He reaches out only to find his advances rebuffed and the target of his affection insulted.

Though J.K Rowling has often said that Remus Lupin is her metaphor for specifically HIV/AIDS and disability in general, I see a parallel with Hagrid and Madame Maxime as well.  To Hagrid, half-giant is an identity, albeit a lonely one, something that he's carried with him his whole life without ever meeting another.  To Madame Maxime, it's the height of shame.  She, like so many disabled people, has internalized the stereotypes about her people and distances herself from the label as much as possible.  She insists that she is not half-giant, merely "big boned", much like many disabled people insist that they're not DISABLED, of course not!  They're merely "differently abled".

Disabled is not an insult.  It's a stop on the subway lines of the human condition.  It's a rainbow shining through shards of broken glass.  It's a new view on life, one explored by stimming fingers and unseeing eyes and silent ears and seen from the lovely vantage point of butt-level as you're rolling down the street.  It's an identity, a culture with pride flowing through its veins while the taste of shame still lingers in its mouth.  It's words like crip, gimp, freak, words that slash open our war wounds like badges of honor.  It's music and dance and poetry and art from the inside looking out.  It's free our people and our homes, not nursing homes and nothing about us without us.  It's hope and fear and cowardice and love, love among people who are deemed incapable of feeling.

Disabled doesn't mean suffering or brokenness.  It doesn't mean that you will never love, or be loved in return.  If you stumble into big-D Disabled land, it doesn't mean that your life is over - it means a new one is just beginning.  Despite what society would have you believe, it doesn't mean inferiority, or a fate worse than death.  It shouldn't be a scarlet letter on your chest.  It's simply another way of being - a turn of the kaleidoscope in a different direction and suddenly all the colors and patterns line up in a way you've never seen before.  Different, even new, but just as beautiful nonetheless.

So when I call you disabled, you better be fucking proud.  Because it means that I hold you in high enough regard to say that you're one of my people, for better or worse.  It means that you can be the cruelest person who ever lived, but you've got something inside of you that resonates with me, that tells me we are the same.  Some of the kindest, smartest, funniest, best people I know are disabled.  You should feel pride that you share an identity with them.  I sure as hell am.

"Jumpstart my kaleidoscope heart
Love to watch the colors fade
They may not make sense but they sure as hell made me"

-Uncharted by Sara Bareilles 

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.

Putting Education First

TW:  mention of the r-word, discussion of ableism in the school system

Back in high school, I habitually missed class.  Not because I wanted to, mind you, but because my bus was always late.  I took the short bus, the butt of immature teen jokes everywhere.  The retard bus.  The bus whose riders are commonly assumed to be drooling sacks of shit who don't have a brain in their heads.

Unfortunately, the transportation company seemed to share these views.  Every day was a gamble, waiting for the bus and wondering if it was going to show up today.  We would teeter on the cusp of late and not-late and wait til the last possible minute, when my mother, who worked in a school herself and would be late for work if she drove me to school, would haul me and my over-stuffed backpack into the car and speed off to school.  More than once, the bus would conveniently show up as my mother was pulling out of the driveway.  There would be no apologies, most times, from the driver and bus aide.  Sometimes there would be a different driver at the wheel entirely, with no explanation whatsoever.  Occasionally there would even be a random student sitting on the bus, who wasn't usually there, and no one would acknowledge the situation.  And then I'd just have to pray that we wouldn't take an unexplained detour to another school or place, because that happened more than once too.  My mother would come home from work, tired from a long day, and then she'd have to call the transportation company to complain about how they were late again, or how they didn't show up at all, or about how my driver was on his cell phone while driving.  Nothing ever really changed.

Once I got to school, depending on how late it was, I would have to go to the attendance office and try and explain why I needed a late pass, even though I wasn't late yet.  They didn't seem to understand that the lateness was inevitable, that I could not possibly drag myself up three flights of stairs (my school had an elevator, but it was dirty, creepy, and frequently broken.  Plus the proximity of the elevator to where I needed to go meant that it would take the same amount of time for me to drag myself up the steps as it would for me to take the elevator.), get my books from my locker, and go down a flight of steps to my classroom and still be on time for class.  By the time I finished arguing with the attendance dragons (erm, I mean "ladies"...), I would end up being late anyway.  My first period teacher would then yell at me for either being late or not having my textbook, because I'd skip going to my locker in a futile attempt to get to class on time for once.

During the school day, I was frequently pulled out of class for physical and occupational therapy.  Once my therapists realized that pulling me out of academic subjects wasn't a good idea, they started pulling me from lunch.  I'd either scarf down my lunch and rush to therapy, or bring my lunch with me to therapy and eat before starting my exercises, acutely aware that this was cutting into my already limited therapy time.  And my PT wondered why my "lunch" normally consisted of a chocolate milk and a bag of chips - it was portable, quick, and edible.  And that was if I had a lunch period at all, which wasn't a given.  So my therapists turned to pulling me out of resource room.  The resource room period that I had specifically written into my IEP to accommodate the need for extra time on tests.  Many days my therapists would come looking for me when I was trying to finish a test, and be annoyed that I hadn't shown up to therapy.  My therapy period would often run over and I'd be late to class.  Again.

My accommodations would often get messed up.  My test would get lost on the way to my resource room teacher's mailbox.  Assignments would be given that I simply did not have the motor skills for - like drawing a map of the world, for instance.  The students tasked with being my notetakers would decide they just didn't feel like taking notes for me that day.  My AlphaSmart, the keyboard that was my notetaking lifeline, would break in the middle of class.  Accommodations for standardized tests seemed especially prickly.  I was told that "Most kids who get accommodations don't take the SAT." The notion that I was both disabled and academically gifted seemed to boggle people's minds.  And these were the people who were supposed to be responsible for my education.

On top of all of that, I left five minutes early from each class to beat the hallway stampede and ensure that I didn't get trampled.  This averaged out to 45 minutes a day of academic learning I missed.  When you consider it was almost 4 hours missed per week, it starts to add up.  Frequently I would stay til the bell just to make sure I didn't miss anything important, risking my safety out in the wild high school jungle halls.  One teacher would constantly give out and collect homework after I left.  When pressed about it by my mother, she had the audacity to respond: "It's not my responsibility to remind Cara when to hand in her homework."

Despite everything, I graduated high school in the top quarter of my class, gained acceptance into a fairly elite college (though I ended up going to a less elite college), and earned enough AP credits to allow me to graduate college a year early.  I often wonder how much better I could have done had all those barriers not been in my way - barriers, it is important to note, had nothing to do with my actual impairment, but instead everything to do with the environment around me.  This is where the social model of disability comes in.  I had impairments in high school - I will always have impairments - but it is the societal barriers around me that actually disabled me and prevented me from reaching my full potential.

When and where did we get the idea that it is okay to give disabled students a sub-par education?  The Individuals with Disabilities Education Act (IDEA) states that all students are entitled to a free and appropriate public education (FAPE).  Was my education free?  Yes, and so was the therapy and other associated services I received - which is exactly why my parents didn't choose to have me go to therapy outside of school like many other disabled children.  We couldn't afford it.  But was it appropriate?  I don't think so.  Though many would say my high school education was a prime example of model inclusion, I tend to disagree.  My education was a dispirited attempt to show that my school was inclusive - nothing more.  I fear the same is true for many disabled children across the nation.

The education system in America is failing all children, but none more so than disabled children.  In our rush to secure equal rights and acceptance, we have skipped a crucial step.  We are arguing for inclusion, which is certainly a noble and just cause, and one that I advocate for often, but without having the necessary pre-requisites in place.  First, we must ensure that all children, including and especially those with disabilities, receive a quality education.  Inclusion means nothing if a child is not receiving a good education, which is, in fact, the very reason we have schools in the first place.  Therapy and other obligations overshadow a disabled child's day.  A quality education means all the tools are in place for a child to succeed in school - including safe and reliable transportation to and from school, an edible and nutrient filled lunch that's designed to help children focus, time to eat said lunch, necessary adaptations to curricula, and individual accommodations.  Notice that therapy wasn't in that list.  Therapy can be useful for minimizing pain and maximizing independence, but when it starts taking precedence over academics, there's a problem.  For children, school is their job.  We must ensure that they are allowed to perform the functions of that job to the best of their ability, just as they will be expected to do in the "real world" with a "real job".

It's time to go back to basics.  Let's put education first.

Murder is a Selfish Act

It is one thing to drown in your pain.

It is quite another to drown someone else in that pain.

I wish I didn't have to write this.  I wish this didn't keep happening.  But it does.

On September 3rd, Kelli Stapleton locked herself and her 14 year old autistic daughter, Issy, in their van, lit two charcoal grills, and waited to die from carbon monoxide poisoning.  Police discovered them both unconscious.  Issy is still unconscious in intensive care.  Kelli is facing possible murder charges, and rightly so.

The usual nonsense is being thrown about.  "The system broke and then it broke Kelli", "I feel bad for the father, his daughter is in intensive care and now his wife is facing possible murder charges", "We must have compassion for this mother, raising our kids can be extraordinarily difficult", "All she wanted to do was to put both of them out of their misery."

You know who I feel bad for?  Issy.  Because her own mother tried to MURDER her.

Yes, the system needs to be fixed.  It is not kind to autistic children or disabled children of any kind.  But I cannot sympathize with someone who thought the best option for her daughter would be death.

Kelli Stapleton made a selfish decision when she put Issy in that car.  She attempted to cut short someone else's life based on her own misery. That was not her choice to make.  But many are calling this an act of love, because she refused to leave Issy behind.

But Issy had a life, independent of her mother, as all children do, independent of their parents.  You can see her life, splashed across the pages of the blog her mother wrote.  She had friends.  She had a cat that she loved.  She had her own thoughts, feelings, and desires.  From the day we are born, we are no longer entirely a part of our mothers - we are out in the world, with our own individual identities, for better or worse.  Our parents must let us go, on many occasions in our lives, with the trust that they have provided us with enough to succeed in life - whatever the definition of success may be.  Kelli Stapleton could not cut that cord - and that's a problem.  If you cannot trust your child to have a quality life without you, you have failed as a parent - because part of being a parent is knowing that you have to let go. It's nowhere near easy, but it is necessary.  Kelli Stapleton didn't think about Issy's own life - she only saw her own struggles.  Seeing another's life only through the lens of your own is the epitome of selfishness.

People say that we should not judge until we know the facts.  But a mother tried to kill her daughter.  What else do we need to know?

Until and unless there is justice for the Issy Stapletons of our world, for the Alex Spourdalakis', for the George Hodgins' and the Tracy Lattimers, these tragedies will keep happening.  Because you can't get away with murder - unless your kid is disabled.

Awareness at what cost?

I recently had an unfortunate encounter with a graphic that snuck its way onto my Facebook newsfeed.  The picture, posted below, is of a green stiletto high-heeled shoe supposedly stomping, with the noise represented in a comic-book like burst.  In green text on the top of the graphic it says "Stomp Out", with "Cerebral Palsy" in fragmented black text on the bottom of the graphic.

When I, an actual person with CP, pointed out that stomping out CP means stomping out me, the admin of the page seemed confused, then defensive.  "No this does not mean to stomp out the person just  CP"

When I, again, pointed out that my CP is inseparable from me as a person, and used the hypothetical example of "stamp out femaleness", my comments were deleted and I was banned from the page.  So were several friends of mine who were backing me up.  Any and all "negative" comments - comments that didn't support a cure - were banned.   In other comments, the page admin and their supporters expressed disbelief that anyone would be against a cure.  CP was compared to cancer.

[March Is Cerebral Palsy Awareness Month:  "Everyone is missing the point here.  We are not stomping out the person just the CP.  Doesn't everyone want a cure?  I know I do.  I live here in NC and let me tell you they are working hard at Duke for a cure you can read about it on line.  I can't believe that this is taken the wrong way I don't see it like this.  Like I said before if you don't like what is posted don't respond and leave the site and don't come back.  There are differences of opinions here and I understand that but some of the comments are negative.  I am just trying to raise awareness if this offends you leave this is my site and I post what I want too."]

I'm blacking out the names and pictures of the supporting commentators, because I don't feel anything would be gained by putting their names and faces out there.  The page, on the other hand, is not blocked out, because people need to know which page did this.

[Why are people so simple minded??  They wouldn't say the same ignorant comments about stomping out breast cancer or epilepsy...It means we want a cure!   Why would someone NOT want a cure?  My son is 8 with mild cp and he can't run and walk long periods of time like other 8 yr olds.  Of course I Want to stomp out this cp so he can have no limitations.  Geez people, come on!]

Gee, maybe if you had actually READ my comments and not deleted them and banned me, you'd know why I don't want a cure.  My CP is no less a part of me than my gender or sexuality.  I literally DO NOT KNOW who I would be without CP - I have always had CP and I will always have CP.  A few weeks ago, exhausted, annoyed, and edgy about possibly missing a train, I told a nosy fellow elevator rider "I was born this way, I'll die this way, and I'm proud of it!" That pretty much sums it up.

And for the record?  Breast cancer KILLS.  Epilepsy?  Can also KILL.  CP does not kill.   Yes, co-morbid conditions like severe scoliosis or epilepsy may kill, but THOSE ARE NOT CP.  There is a world of difference between a condition that merely impacts the way your brain and body work, and a condition that WILL KILL YOU.

Notice that most of the commentators here are parents.  That should tell you something.

[Clint Berger:  Now that I see you don't have CP, it all makes sense.  Please stop silencing and attempting to speak for those of us who do.

March Is Cerebral Palsy Awareness Month:  I know I don't have CP but my sons do.  Not one but two.]

Being a parent doesn't give you authority over those who actually HAVE the disability you're talking about.  You are one step removed, we are none.  "I'm a parent" is not a valid argument against someone who has been living with these issues day in and day out for decades.  It's the same argument as "I have black friends so I can't possibly be racist!" No.  This is my life you're talking about.  You don't get to hijack it.  In case you haven't noticed, being a parent of a child with a disability and actually BEING A DISABLED PERSON are kiiiiiiiiiiiiind of two different things.

The admin proceeded to put up two different passive-aggressive statuses warning that any "negative" commentators would be banned.  Their supporters immediately ran to stroke their ego, again, mostly parents.  Some of the commentators declared their love and pride for their children, just the way they are.  Why then, are you supporting a page that wants to stomp out CP?

[I do not think there is anything wrong with my child who has cp!  She is perfect to me!  If this world wasn't full of cruel people and mean children who bully or tease the person or child who is different, then I wouldn't worry so much about my daughter.  She knows no different than how she is now.  I hurt when she hurts and she does.  I defiantly [supposing that was meant to say definitely] think more people should be aware of CP.  This page is brilliant & helps a lot of people!]

If you don't think there's anything wrong with your child, then why do you support a cure?  "She knows no different than how she is now".  Exactly.  Which is why I don't want a cure.  When you say "Stomp Out CP", you are stomping out your daughter.  You are stomping out ME.  By supporting this page, you are supporting the type of fear-mongering that makes people see our lives as a tragedy and something to be, yes, "stamped out".  When you support those types of organizations, those types of causes, for your disabled child, here are some of the things you want people to do to your child.  And obviously, as we saw, this is not limited to autism.  Do you really want your child to think their life is a threat to be eliminated?

You want more people to be "aware" of CP.  Congratulations, you've succeeded.  They're aware that CP is something bad, something that needs to be stamped out.  They're going to breathe a sigh of relief for their "normal child" and thank God that their family isn't afflicted with a terrible burden.  They're going to pity you and your family for being so unlucky.  This is the kind of environment your "awareness" creates.

What is your point with awareness?  Sure, people are "aware" of CP, in the same way that they're "aware" that the sky is blue.  It's a thing.  But awareness doesn't go deeper than that.  Awareness needs to be coupled with understanding and acceptance.  Otherwise, it's just shallow.  And that can be dangerous.  Here are some more important things you should be "aware" of.   (It's autism centric but can apply to other disabilities as well.)

As a parent, you are doing your children a disservice.  By spreading this kind of "awareness", you are telling your children that they are not worthwhile the way they are, that there is something wrong with them.  And by silencing the very voices that know what it's like to have CP, you are silencing and alienating the people that could help your children get along in the world.  We are like your child, more than you know, and someday your child will want to meet others like them, maybe even now.  Do you really think refusing to even hear us out will bode well for when your child asks "Why am I the only one like this?"?

You are making people aware of CP.  But at what cost?  Take a minute and think about the picture you're painting.  It's not a pretty one.

***Side Note:  "Stomp Out CP" is almost as horrifying as "Smother Autism".  And at the time morbidly hilarious because most of us can't wear high heels like in the picture or stomp.  I can stomp, but not wear high heels, actually.***

Addendum:  In response to the "Stomp Out CP" hoopla, one of my favorite people, Juniper, who's a disabled mother to a disabled daughter, created a satirical "Stomp Out Normalcy" page on Facebook, similar to Rachel Cohen-Rottenberg's "Neurotypical Awareness" memes.  Go check it out and share your stories of normalcy!

The Importance of Perception

Those of who who read disability blogs a lot may know where I'm going with this.  For those who don't, enjoy the ride.

Dear God, If You Exist: Please Don't Cure Me

Dear God, If You Exist: Please Don't Cure Me - News - Bubblews

New post on Bubblews discussing the apparent phenomenon of the power of prayer "curing" a man with CP.  You can read more about it at http://www.parents.com/blogs/to-the-max/2013/07/30/autism/god-isnt-healing-my-child-with-cerebral-palsy/.

Feel free to like the Bubblews post and share it around!!!

Don't Sanitize My Disability Justice

This may come as a surprise to some people, but disability justice doesn't mean "put ramps and elevators in", nor does it mean "hire the handicapped".

OK, so it means that a little bit.  Access is nice.  So are jobs.  But there are far more pressing and disturbing issues to deal with.  Just as the LGBTQ+ rights movement isn't exclusively about marriage, and the Black civil rights movement was not, and will never be, exclusively about voting, the disability rights movement is not exclusively about physical accessibility, or employment.

It's about people like us being murdered, and our murderers not only getting away with it, but garnering sympathy for finally putting us out of our misery.

It's about meetings where they try to explain to us that it's "not about [our] limitations".  Because they're so fucking uncomfortable with the idea of disability that they'll go to any lengths to avoid it, even avoiding the word.

It's about being accused of lying, of faking it, by a grown woman who is supposed to be teaching us how to teach kids like me.

It's about some disabled people being silenced, while others, the ones who are seen as bravely trying to overcome their disabilities, have their voices amplified.

It's about the deep-seated fears of people who don't want to be like us. It's about the consequences of those fears. It's about the mindset "better dead than disabled".  It's about equating death with disability, equally horrible outcomes. It's about newly disabled people wanting to die, and that being completely understandable, because in their minds disability is a living hell.

It's about denying ableism exists, when no one would ever dream of denying the existence of racism, or sexism.

It's about being the butt of everyone's jokes, and no one sees a problem with that.  It's about being seen as a problem, or a punchline, rather than a human being.

And therein lies the fundamental problem.  We've been working backwards all this time.  If we can't even be seen as human beings who deserve the same basic rights as everyone else, how in the world are we going to convince people that we need accessible buildings, or jobs?  I am a fucking person, do you see that?  Of course they don't want to give us jobs, or healthcare, or independent living, because we're not people.  It's our own form of slavery, wrapped up in pretty little bows that say "special needs", "differently abled", "handi-capable".  It's our own 3/5 Compromise couched in political and social bullshit.  Because as long as they can Other us, they can justify not treating us with basic human dignity.

You can't sanitize disability justice.  And you can't sanitize me, either.  Because I'm not a sanitized crip.  I'm spastic, fantastic, one of Those People taking the Big Bad Crazy Pills, anxious, depressed, mobility aid walking, rolling wonder.  I call myself a cripple and proud.  And I'm not even half as hardcore as some of my friends.

Ableism is insidious, as are all forms of discrimination. It gets inside your mind.  And to present a shiny, PC version of it is grossly ironic and unjust.  Discrimination isn't supposed to be neat and tidy - it's supposed to be messy, tangled, bringing to light issues that everyone would rather not be talked about.

So this is a plea - please don't sanitize my disability justice for your own comfort. Come back to me when you feel uncomfortable.  Because that probably means you're doing it right.

Dear Parent Advocates: It's Not About You

Dear parent advocates, parents of kids like me and so many more,

It's not about you.

Come to think of it, it's not about us either.

It's about society.  It's about reinforcing the status quo.  It's about which voices get amplified, and which voices get silenced.  It's about contributing to a world that is already hateful and inaccessible to people like us.

The world listens to you, did you know that?  "Special needs" parents (ironically, though this particular order of words seems to imply that the parents themselves have special needs, actual disabled parents, parents who have disabilities themselves, are often threatened with having their children taken away, because it is presumed that no one with a disability can possibly take care of a child) are often treated as saints for "putting up with" us.  "Special needs children" are regarded as "special gifts from God", which makes those who raise us some sort of Messiahs, humble servants of God.  It makes parents of children with disabilities larger than life figures, and just like our society's fervent fascination with the exploits of celebrities, we always love to hang on the coattails of those who are larger than life, cling to their every word.  Though disabled people themselves are often assumed to have triumphed over tragedy, sadly incompetence is presumed far more often than competence.  We then turn to the people who love these inanimate pieces of tragic inspiration, the people who are good and pure enough to raise them, their parents.  And who doesn't love a feel-good inspiration story?

So when you turn to the public airwaves and say that children like us are broken, are unlucky, that we have monsters in our brains, people listen.  And they internalize those narratives.  It's words like those that paint us as burdens, as lesser than nondisabled, "normal" children our age.  It's words like those that convince people that it's okay to subject their children to dangerous, untested treatment methods in a futile attempt for a cure. It's words like these that indoctrinate people into having sympathy for parents who murdered their children.  Because these words all give the impression that life with a disability is not really living at all.  Whether or not that was your intention when you thought those words, when you spoke them, when you put them out there for all to see, that's the impact your words have.  Intent is not magic, and your choice of words means everything.

There is blood on your hands.  You might want to clean that up.  Now that you know you have a permanent place on the stage of life and disability, it is up to you what you want to do with it.  You can either use your words to fuel intolerance, or to fuel acceptance.

Your choice.

The Opposite of Jealousy is Love

Dear Mom,
Dear Dad,
Dear Mommy, and Daddy
Mama, and Papa
Dear all the parents, of all the kids like me,

I know.  You're jealous of those other parents.  You're scared, and confused, and possibly even a little angry, because your child isn't typical, because life threw you for a loop, and now you're hearing confusing words like "autism", "cerebral palsy", "developmental delay", "Down Syndrome".  You watch the way other parents go about their lives with such ease and you think "Why can't it be that easy for me?"

But do you realize what you do to me, when you say you're jealous?  When you reference those other children, whose muscles developed in the "right" way, and in the "right" order?  Does that make my body wrong?  And if it does, doesn't that make me wrong?

When you say you're lucky, what does that make all the parents of all the children who are, in your eyes, "worse off"?  Unlucky?  Some would call you the unlucky one, for having me at all.  If I were a "normal" child, would you consider yourself lucky, for avoiding the unfortunate reality of a disabled child?

You reference the drained bank accounts, the hours of therapy, as though I'm no more than another written check, a finance-sucking monster.  Have you really distilled my life into a monetary value?  Into a quantifiable number of hours, number of days?  You dehumanize me.

You bemoan that I have never heard you say I love you.  But I know you love me, because I can feel it.  Love isn't about words.  It's about the little things.  It's about staying up all night, waiting to hear the slam of the door as your child comes in.  It's about tucking your child in every night, even when you know she's way too old.  It's about the hugs that mean everything.  And it's about giving your child the best possible quality of life you can give - and knowing that quality of life doesn't mean being normal.  It means being happy.

You make me feel like a burden on your life as you enumerate my difficulties, the things that other children do that I did late or may never do.  Is that what you wanted?  Because congratulations, you've succeeded.  But you wanted to be my parent.  It doesn't matter if you wanted a normal child more, because you can't request that of the egg and sperm that come together to make a child.  You can't return me like a too-big dress, a shirt that looked good on the hanger, but awful when you brought me home.  I am your child - like it or not.

I'd be lying if I said I wasn't jealous sometimes, too.  Jealous of the fluid movements, of the endless energy, of the life without pain.  But the fact of the matter is, this is my life and I enjoy it to the fullest.  I do not feel the loss that you feel, because I never envisioned myself any other way.  I am not broken, or worthless, or unlucky, or wrong.  Please don't put those labels on me because of your unexpected journey into disability-land.  I am whole, just the way I am.  Do you see me that way?

You are entitled to your jealousy, and I am entitled to my sadness.  All I want is for you to love me - no restrictions, no qualifiers, just the way I exist, right at this very moment.  Is that too much to ask?

Love,
Your Child