When Do Autistic People Count? An Open Letter to Maggie Gallagher

Dear Ms. Gallagher,

I am terrified.

I recently read your article on Yahoo news - titled "When Science Doesn't Count".  It is the latest in a choking wave of hatred towards the Autistic community that has overflowed since the Newton massacre last Friday.  I am tired.  In fact, I am exhausted.  But your article inspired such fear in me that I knew I had to respond.

Autism is not a mental illness.  It is a neurodevelopmental disability that causes issues with sensory processing, social interaction and communication.  None of those lead to methodical, premeditated violence such as the shooting that occurred in Connecticut on Friday, regardless of the sources you provided.  The vague references to "aggression" in the studies you referenced are broadly defined.  Aggression is, after all, in the eye of the beholder, and some Autistic people engage in behaviors like self-harming out of frustration or for sensory reasons.  "Aggression" can be inwardly as well as outwardly directed.  And a study conducted recently by Danish epidemiologists shows that Autistic people are, in fact, nearly twenty times less likely to be violent than the general population.

Autistic people can have co-morbid conditions, conditions that exist alongside with autism.  These conditions run the gamut, and can sometimes include mental illnesses like psychosis.  Yes, autistic people can be psychotic, just like neurotypical people.  Autistic people can also be influenced by violent video games, the media, and all other things in our society that could lead to someone thinking it would be a good idea to shoot up an elementary school.  They are not monsters who are the embodiment of our fears, nor are they angels in plastic bubbles who are protected from the worst our society has to offer.  They are, quite simply, people like you and me.

How do I know this?  Why do I care?  Because, although I am not autistic myself, I am neurodivergent - I have cerebral palsy and several mental illnesses, all of which affect the way my brain functions.  And Autistic people are my friends.  No, not "friends" in that after-school special sense, where I am forced to interact with them or I talk to them out of pity or some misguided sense of heroics.  They are actually, truly my friends.  I can think of at least ten off the top of my head and I know there are many more.  They are fun, funny, witty, and awesome - just like my non-Autistic friends.  Not one of them would dream of ever hurting another human being deliberately.  And lest you respond that the relatively small (in the grand scheme of things) percentage of Autistic people I know does not represent the Autistic population as a whole, I remind you that the small percentage of Autistic people you blogged about who you held up as examples of the link between aggression and autism do not represent the Autistic population as a whole either.

My Autistic friends run the gamut.  Some have limited verbal skills, where others are quite verbose.  Some were diagnosed as children, others as adults.  Some have co-morbid conditions such as epilepsy, while others do not.  They are of all backgrounds, races, and ages.  They are as diverse as any cross-section of the population, except for the one fact they have in common - they are all Autistic.

It's not all unicorns and rainbows either.  I've witnessed an Autistic friend have a meltdown in the middle of a Metro station.  I've seen Autistics who will literally wander out into traffic.  And I've encountered the fear that parents of Autistics face - the fear that they will not be able to keep their children safe.  None of these parents fear for themselves - instead they fear for their children.  In the wake of a society which deems autism an "epidemic" and a "tsunami", Autistics are being actively persecuted.  No one who even seems Autistic is safe.  Your article marks parents (mostly mothers, for some odd reason; Autistics do have fathers too, you know) as the victims of a cruel "domestic violence", but the truth is, in liberating parents, you shackled their children.  By suggesting that Autistic people are violent, you have influenced the people of our society, who treat online news media  like it's the new Bible, to fear and despise a whole community of people.  Are you proud of that fact?  Because it sickens me.  Autistic people are tortured.  Autistic people are murdered.  Because people are terrified of autism.  Autistics have been fighting for so long to be heard, to push past the irrational fear of autism that stems from a fear of difference and disability.  This latest incident has set back those few creeping advances indefinitely, and you have directly contributed to it.  You suggest that Autistic people should be institutionalized.  Hitler had institutions too.  They were called concentrations camps.  And disabled people were some of the first to be warehoused and later murdered there.

I am not Autistic.  Sadly, that simple declaration earns me more respect than my Autistic peers, because I am deemed worth listening to.  But if you really want to listen, you'll talk to actual Autistic people, who are actually fearing for their lives right now.  I'd be all too happy to direct you to the blogs of many Autistic people I love and respect.  I can only hope you'll take my advice.  You may not think science counts, but Autistic people do.  They have a voice.  And they are finally speaking.

Sincerely,
Cara Liebowitz

Read More

Praying for Time: The Sandy Hook Shootings, Mental Illness, and Ableism

I sit across the table, discussing the Sandy Hook Elementary School shootings with people I love, people I respect, people who I trust.  I know I'm treading on thin ice, but it's like a car wreck, I can't stop, can't look away.  And then the ice cracks, oh god, here it comes, it always boils down to this.  With smug conviction she says:

"We need to keep guns out of the hands of the mentally ill."

I take a deep breath, but can't stop my voice from rising.  I stare straight at her as I challenge:

"So you're saying that I shouldn't be able to own a gun?  I have mental illnesses." Whether or not I would actually want to own a gun is irrelevant; it's the principle of the thing.  The response is instantaneous.

"Not you!" The implication is that I'm being ridiculous for drawing a logical conclusion.  "Having depression or anxiety is different.  I'm talking about psychopaths."

And yet a professional psychologist said point blank in an article for ABC News:  "I think it's far more likely that what happened may have more to do with some other kind of mental health condition like depression or anxiety rather than Asperger's"

Depression and anxiety are the two mental health conditions I have, with a wide range of symptoms and issues that fall under them.  So clearly, there are people out there who think it's not so different, professional people who are supposed to know what they're talking about.

This is all I've heard since the news broke on Friday, all I heard on the radio during the three hour car ride back from college.  From news anchors to radio DJs to friends and family, all I've heard was that Adam Lanza, who murdered 27 people, including his own mother and 20 small children, six and seven years old, was a "lunatic", "fucking crazy", and "completely nuts".  I've stopped listening now.  I'm tired of hearing my people, and people I care about - like autistic people - systematically demonized.

I know it's tempting to slap a label on the gunman and call it a reason for his actions.  I know it's instinct to try and make sense of a senseless tragedy.  But the fact of the matter is, we can't blame everything on mental illness, real or perceived, and to brush off a murderer's actions on "mental illness" or "autism" demonstrates an extraordinarily shallow understanding of not only the situation, but mental illness/autism as well.

All this serves a purpose, a purpose to distance ourselves from the perpetrator.  By pinning the incomprehensible actions of one man on mental illness, or autism, we're saying that it could never happen to us.  It makes it into something foreign, something scary, but something that could never touch us directly.  It creates twisted parodies of people, people that kill their own mothers and six year old children, monsters that could never be as human as we are.  But like it or not, Adam Lanza was human.  And I bet those twenty seven people who died on Friday never thought it could happen to them either.

We are the mentally ill.  We are your brothers, your sisters, your teachers, your friends.  We are anything and everything you are, every bit as diverse as you are.  We come from different backgrounds, races, gender identities and sexual orientations.  And we are tired.  Tired of being blamed for murders, tired of the invisible blood that the media paints on our hands.  In the wake of this latest tragedy, the scapegoats, the victimized are speaking up.  We will not be silent anymore.

"And its hard to love when there's so much to hate
And hanging onto hope
When there is no hope to speak of
And the wounded skies above
Say its much, much too late
Mm, well maybe we should all be praying for time"
-Praying For Time by Carrie Underwood (originally performed by George Michael)

Read More

Boldly Going Nowhere: An Open Letter to William Shatner, Leonard Nimoy and Sir Patrick Stewart

Dear William Shatner, Leonard Nimoy, and Sir Patrick Stewart,

Star Trek was created out of a simple vision - a vision of an Earth that has advanced beyond hatred, prejudice, greed and war.  To that end, an organization like Autism Speaks, that seeks to destroy an entire population of people, does not seem to fit in with that vision.  And yet it was with great disappointment that I heard that all three of you are participating in a fundraiser to "Sound Off for Autism Speaks".

Autism Speaks has habitually rejected the perspectives of actual autistic people.  They have no autistic people on their board of directors and prefer to instead misquote and plagiarize Autistic activists.  They continually use scare tactics to refer to autism as an "epidemic", comparing it to deadly diseases such as cancer and AIDS.  Autism Speaks paints a picture of autism as a life-ruining burden, that sucks money from our nation and holds our children hostage.  Autism doesn't kill, but rhetoric spouted by organizations like Autism Speaks does.  Included in this blog post by Autistic activist Kassiane Sibly is an incomplete list of disabled children and adults murdered by their parents or caregivers, most of them Autistic.  These human beings were cruelly murdered, executed for the "crime" of being disabled.  And Autism Speaks tacitly encourages these abominations by using fear-mongering language in their website and advertisements to paint a picture of autism as a devastation, instead of simply a different way of being.

In the Star Trek: The Next Generation episode "The Masterpiece Society", Geordi LaForge finds himself on a planet where people like him do not exist, a planet where disabled fetuses are terminated at conception and genetic conditions are eradicated through DNA manipulation.  Hannah Bates, a scientist on the planet, explains to him: "It was the wish of our founders that no one have to suffer a life with disabilities." Geordi responds: "Who gave them the right to decide whether or not I should be here? Whether or not I might have something to contribute?" I ask the same of Autism Speaks.  No one should have the power to decide for someone else whether or not they should exist.  That power lies with the individual, and the individual alone.

Gene Roddenberry once said: "Star Trek was an attempt to say that humanity will reach maturity and wisdom on the day that it begins not just to tolerate, but take a special delight in differences in ideas and differences in life forms. […] If we cannot learn to actually enjoy those small differences, to take a positive delight in those small differences between our own kind, here on this planet, then we do not deserve to go out into space and meet the diversity that is almost certainly out there.”Autism Speaks actively seeks to destroy diversity and difference by making prevention and a cure for autism its primary mission, and silencing the voices of those who can truly offer insight into autism - autistic people themselves.

I encourage you to take a look at the Autistic Self Advocacy Network's informational flier on Autism Speaks, and read this letter from autistic activist Leah Grantham on this very topic.  Consider supporting an autism organization run by Autistics, such as the Autistic Self Advocacy Network or Autism Network International.  Autism Speaks is the antithesis of everything Star Trek has represented for nearly half a century.  I am not autistic, but I am disabled, and I stand with my Autistic brethren on this matter.  Star Trek has, since its inception, continually pushed boundaries and re-framed diversity.  I beg you to please follow the example of the show that has touched so many hearts, and stand for diversity, acceptance, and justice for all.

Sincerely,
Cara Liebowitz, a disabled Trekkie

Read More

Its Not Your Fault - International Day of Persons with Disabilities

Today is the International Day of Persons with Disabilities.  The theme this year is "Removing barriers to create an inclusive and accessible society for all".  There are innumerable barriers I could talk about, from physical barriers like lack of access, to societal barriers, to medical and legal barriers .  But I feel like no matter which of these barriers I choose, I'm only talking about one subset of disabled people, one group or maybe two or three who face these barriers.  And that's not what this day is about.  This day is about all the fragmented pieces of our community coming together and celebrating a disabled identity.  This isn't about just the physically disabled, or the intellectually disabled, or the "visibly" or "invisibly" disabled.  Today is about knocking down those barriers between us, recognizing and embracing each other, in all our diverse disabilities, and learning to embrace a practice of interdependence.  Because if we can't depend on each other, the others who have struggled and cried along with us, who can we depend on?

To that end, I want to talk about the most insidious barrier that faces our community, a gun that every disabled person finds themselves staring down the barrel of at one point or another.  It's the barrier inside our own heads, the barrier of blame, the barrier of inadequacy.  The barrier of internalized ableism.  The barrier of fault.

"If I just stopped stimming in public, I'd be able to fit in."

"If I just shut up, and didn't make a big deal out of my disability, maybe people would like me more."

"If I just bit the bullet and walked instead of using my chair, I'd be able to do this."

"If I just sat up in class instead of slouching, my professors wouldn't yell at me."

If I just...

If I just....

If I just.

If you take away nothing else from this post, I want you to take away this:  it is not your fault.  You don't have to do anything, say anything, be anything that you don't want to be. You don't have to meet other people's expectations of you.  You don't have to mitigate, castigate, hide the effects of your disability.  You don't have to cut your corners to fit into that round hole.  I know it feels like the only way anyone will ever love you, want you, is if you're that round block and you fit neatly into that round hole.  But your corners make you who you are.  They make you unique.  And if no one else loves you for it, not your friends, not your family, not your teachers, I do.   I don't care if we've never met, if we've never spoken, if I have no idea who you are.  No one is a stranger in this land of the freaks.  I love you, you fellow disabled soul, you fellow prince or princess of heartbreak, of pain, of self-imposed failure.  Bring me your tired, your battered, your society's prisoners yearning to break free.  I welcome you with open, spastic arms.

"You see, it’s my job
to unlock doors
unshackle minds
break through glass ceilings
motivate, inspire, and challenge you,
I’m here to challenge you"
 -Dare to Dream by LeDerick Horne

Read More

DISABLED FRIENDS IN NYC NEED HELP DURING THE BLACKOUT!!!!!!!!

My friend Alejandra lives with her significant other, Nick, in Lower Manhattan on Duane Street.  Nick relies on a ventilator to breathe (i.e:  he will die without a ventilator).  With the power out due to Hurricane Sandy, they are relying on a backup battery that is charging across the street at the fire station.  They need people to go to the fire station, pick up the battery that’s charging, bring it to them, and bring the used battery back to the fire station.  Really simple, but really really crucial.  Sign up at the link if you can help and please please SIGNAL BOOST THE HELL OUT OF THIS!!!!!

https://www.facebook.com/notes/amalle-dublon/please-circulate-widely-in-nyc-need-help-during-the-blackout/10151213577505798

Read More

Your Words Have a Face. And That Face Is Me.

I am a cripple.

When I say this in common conversation, it usually elicits gasps and a swarm of people rushing to reassure me that of course I'm not a cripple!  Oh, no, no, no, not me!  I'm just different, you know?  Certainly not crippled.

I don't know why people are so quick to tell me I'm not a cripple, and yet turn around and use that word to make a joke.  We've all seen it.  A kid in school breaks his leg and suddenly everyone's going "HAR HAR HAR, YOU'RE A CRIPPLE, DUDE!!!". The assumptions laden in that are that cripples are incapable, not to mention some other species of person. 

Ableist slurs like cripple, spaz, crazy, and most infamously of all, retard, Other us.  Cripples, spazzes, crazies, retards, aren't people we know, people who live and work and cry and laugh just like any other person.  They are some distant ideas of people, fear-mongering shadows that lurk in the corners of our society to steal our children away.

I'm crazy.  I have mental illnesses for which I am currently on medication.  According to some states, I should not have the right to vote.  And according to President Obama, who specifically said in the second to last debate that "we need to keep guns out of the hands of the mentally ill", I should not be permitted to own a gun.  Even if that gun is the only means of defending myself I have.  (Regardless of that statement, I'm still voting for Obama, because as a woman and a disabled person, Romney absolutely terrifies me.  But this is not a post about politics.)

Why don't you think of me when you think "spaz" or "cripple" or "crazy" or "retard"?  Because I go to college?  Because I write a blog?  Because I speak at conferences?  Because I'm your friend?

Well, I'm here to put a face on those words you toss around so carelessly.  When you say those words, you are attacking me.  Not somebody's fictional idea of what those people should be.  Me.  The college student, future teacher, Trekkie, activist, and whatever the h*ll else I am.  Your words hurt me, and regardless of how flippantly you tossed those words out, they stick with me.  For days, weeks, months, years. 

I am a cripple.

I am a spaz.

I am crazy.

And I am not the butt of your jokes.

[A black and white photo of a smiling young woman in a zip up 3E Love hoodie.  In big black font on the side, it says "Spaz.  Cripple.  Crazy.  RETARD.]

Read More

The Definition of Fun

You say you wish you had a scooter.  You say it looks like fun.  And yes, it can be fun, zooming around campus at a grand 4.5 miles per hour, the wind in my hair, unencumbered by my legs.  But after awhile, it stops being fun.

It stops being fun when a kid who’s texting and walking literally falls in your lap, nearly tipping your scooter, and doesn’t even have the decency to apologize before he walks away.

It stops being fun when it takes five to ten maneuvers just to get out of your dorm room.  And if you don’t do it just right, if you’re even the slightest bit off, you have to start maneuvering all over again, and all the while you’re panicking, knowing your time to get to class is dwindling away.

It stops being fun when the wheelchair accessible desk is tucked in a corner, and every day you have to move it, and everyone looks away uncomfortably, pretending they don’t see you so they won’t have to offer to help you.

It stops being fun when you have to miss class because it snowed overnight, and the paths aren’t clear enough for your scooter to get through.

It stops being fun when you feel like there’s a constant, bright spotlight on your head that will never, ever go away.  When you’ve been reduced to a nickname of “Wheels”, and not once, over nearly three years, has anyone ever bothered to ask you what your real name is.  When professors know who you are before your wheels cross the threshold of the classroom, not because of any great feat you’ve done, but because you stick out like a sore thumb on campus.  And you wish that just one time, you could blend in, be anonymous, just another one of the hundreds of students that attend classes every day.  But you will never, ever get that right to anonymity, no matter how hard you beg, no matter how much you cry.

When you use a wheelchair, you lose your right to be an individual person.  Your entire personality, the entire sum of experiences that makes you YOU, gets distilled down to one aspect of yourself - an important aspect, but only one aspect nonetheless.  People don’t look at your face anymore, only your wheels.  That’s why we all get mixed up with each other - because no one bothers to look at our faces.  Having a (fairly visible) disability isn’t just something you can turn and off at will - that’s why the simulations are screwed up, because you can just hop out of the wheelchair when you’re done and go “Well, that was fun!  Back to reality now!” This IS my reality, and it’s never, ever going away.

So go on.  Keep thinking it’s fun.  I won’t argue with you - that would be a waste of my already limited energy.  But maybe someday, you’ll end up like me.  Due to an accident or disease or just plain old age, you’ll use a chair.  And when it’s no longer a game, you’ll see how “fun” it is.  I hope you’ll look back and think about what you said to me.  Hopefully, you’ll apologize for your ignorance.  And maybe, wherever I am, I’ll hear you.

Read More

An Open Letter to Nancy Grace

Dear Nancy,

I am deeply disturbed by your gross ignorance and ableism on an episode of your show, which aired August 7th, 2012.  The episode in question examined the murder of 22 year old Gabriel Philby-Zetsche.  Philby, who had cerebral palsy, was found dead in the apartment he shared with his mother on July 30th, with stab and bludgeon wounds to his head, face, and chest.

On your show, you expressed surprise that Philby was not receiving any sort of government assistance.  First of all, it is extremely insulting that you automatically assumed that Philby could not work and “should have been receiving….[services] from the government”.  Most disabled people are fully capable of working.  Even disabled people who do not work are not necessarily on government benefits for a variety of reasons.  As anyone who has ever tried to apply for disability benefits knows, it is a drawn-out process, requiring access to health care, extensive documentation of disability, which not all people have the privilege of obtaining.  Furthermore, even if the application process is completed, the Social Security Administration’s definition of disability is complex, and many people do not get approved for benefits.  It is worth noting, as well, that disabled people face the same employment barriers as non-disabled people in the current economic climate.

You also questioned Philby’s “functioning level” and stated that because he was able to help his mother with the cleaning and do other domestic tasks, he was not a “burden” on her.  This seems to suggest that more severely disabled people are burdens on their parents or caregivers, and therefore their murders are somehow justified.  This is not a new phenomenon.  In fact, this blog post by Autistic activist Neurodivergent K includes a (very) incomplete list of disabled people murdered by family or caregivers.  In all of these cases, comments were made trying to justify the murderer’s actions, citing the “difficulty” in caring for a disabled child and what “burdens” they must have been, as if a disabled person is no more than a heavy package, a weight on someone else’s shoulders.  You would never claim that nondisabled children are burdens on their parents.  Why, then, does the addition of a disability suddenly make them burdens and less worthy of love and care?

Finally, I am troubled by your choice of language.  Throughout the episode, you repeatedly referred to Philby as “suffering from” and “a victim of” cerebral palsy.  These are phrases designed to evoke sympathy and pity, things that disabled people neither want nor need.  I do not pity Philby because he was disabled.  I pity him because he had a life that was cruelly cut short.  An acceptable alternative would be to simply say that he “had cerebral palsy”.  Philby was not a victim of cerebral palsy.  He was a victim of murder.

I applaud your effort and dedication to shedding light on this horrific crime.  I hope my letter has given you pause and will advise you on how to proceed on disability matters going forward.

Sincerely,
Cara Liebowitz

Read More

"Have you tried counseling?" The Stigma Against Psychiatric Medication

When you first begin having mental health problems, everyone leaps to recommend counseling.  People rush to send you recommendations for therapists, caring professors include the link and phone number for the on-campus counseling center in their syllabi.

No one ever tells you what to do when the counseling doesn’t work.  When you end up crying uncontrollably during and after each session.  When you dread your counseling sessions so much that you cancel, because you’re having a good day and you don’t want all those emotions dredged up again.  When each session only serves to remind you of how utterly awful your life is.

And that’s where medication comes in.  Medication as an option, that you have to research yourself, because no one ever suggests it.  And there’s this constant current of disappointment just below the surface when you talk to people about it.  They say “Have you tried counseling?” and then when you inform them that yes, in fact, you have, they assume you just haven’t tried hard enough.  That maybe it was the wrong counselor, or the wrong type of therapy.  They urge you not to be so hasty, not to let one bad experience taint your vision of therapy.  “Go back!” they say.  “Try again!” they say.

Why the hell would I want to go back to a treatment that caused me extreme emotional distress?

It’s because there’s such a stigma against psychiatric medication in our society.  Therapy is accepted, so commonplace it’s almost trendy.  But medication is a no-no, because as soon as you go on medication, there’s something Wrong with you.  You’ve become one of Those People, those crazy people, who relies on medication to be stable.

“But medication can have side effects!” they say.  And true, that is certainly an issue you have to consider when going on medication.  But it’s like an infected wound.  What’s better - poking repeatedly at the wound so it becomes even more inflamed  and infected, or providing antibiotics, which can have side effects, but will clear up the infection in the long run?

“It’s all a big hoax!” they say.  “Big Pharma and all of that!” Well, I’m here to tell you that I don’t give a flying fuck about Big Pharma and whether or not the pharmaceutical industry is looking out for patients’ best interests.  All I know is that medication is the only thing that made me feel like a human being again.  And that is certainly NOT a hoax.

Then they want to know when you’re getting OFF the medication.  Even doctors will sneak it in, mentioning tapering off as soon as they think they can get away with it.  Forgive me, doctor, but I’m doing so well on medication.  Ever heard the saying “If it ain’t broke, don’t fix it”?  Well, I implore you, please don’t try to fix me, because I don’t need fixing.  I am happy on medication.  Happier than I was when I wasn’t on medication.  Why, then, do you seem to want to deny me my happiness?

If I need a little white pill to be stable, so what?  If it’s a crutch for me, so what?  It enhances my quality of life, just like my real, physical crutches do.  Would you rather I was curled up in a ball sobbing all the time, like I was before the medication?  That doesn’t bode well for taxpayers.  With medication, I can go out and be a productive member of society.  Isn’t that what society wants from me, and for that matter, everyone else?

And this, ladies and gentlemen, is why I’m wary of disclosing that I’m on psychiatric medication.

Read More

The Trifecta of Spoons

I’m sure you all know by now of my deep, undying love of the Spoon Theory by Christine Miserando.  In recent months and years, I’ve expanded my own, personal definition and application of the spoon theory to include three parts:physical spoons, cognitive spoons, and emotional spoons.
Physical spoons: Physical spoons are the spoons used for physical tasks - walking, standing, writing, carrying something, showering, etc.  As a person with CP, these tasks take a lot more energy than they do for someone without CP, and therefore I have to be very conscious of my physical spoon count.

Cognitive spoons: Cognitive spoons are the spoons required to think and produce a coherent output of words, whether that’s in speech or writing.  Cognitive spoons are required to write long blog posts like this and organize them in a manner that makes sense, as well as writing other things like poetry or fiction.

Emotional spoons: Emotional spoons are used up when I’m really, really feeling something.  My mental health issues, anxiety and depression, both eat up a lot of spoons.  Talking to friends who create a lot of drama also takes up a lot of emotional spoons, spoons which I can’t always spare.

These three categories of spoons overlap and intersect in a variety of ways.  For instance, speaking verbally takes both physical and cognitive spoons.  It takes cognitive spoons to put together the words I want in my head and make sure they come out the way I want them to.  It takes physical spoons to make the words come out of my mouth clearly and without stuttering.  And the lower I get on spoons, the harder it is for me to do these things.

And when I get low on one type of spoon, I tend to borrow spoons from the other spoon areas.  Which means if I’m doing a presentation, I will do much better if I am able to sit.  My thoughts will be clearer and I will be able to express them better if I am not using up spoons by standing, a task which is very hard for me to do.  There are three types of spoons, but they are very heavily influenced by each other.

When I say I’m exhausted or out of spoons, I may mean physically.  I may mean cognitively.  I may mean emotionally.  Or I may mean all three.  Either way, it’s a signal for you to back off and give me some space to rest my body and brain for awhile.  If I don’t want to talk to you, it’s nothing personal.  It just means that I can’t handle the toll on my spoon count right now.

Read More

On Gratefulness and the 22nd Anniversary of the ADA

22 years ago, the law that feeds my existence was signed into law.  Two years later, I would be born, and therefore would spend my entire life under the protection of that law; the law which allows me to go to school, use public transportation, go shopping, and generally live my life to the fullest.  I am happy that I have never had to suffer in the dark days pre-ADA.  I am proud of my brothers and sisters who came before me, who fought for this law so that I, and all the generations of disabled people after me, would be free of the injustices they faced daily.  I am ashamed that I still taste the bitterness of ableism day after day.  But one thing I am not - and never will be - is grateful.

Grateful implies that I should be thankful for human rights, rights that others take for granted. No one has ever been kicked out of a restaurant for being non-disabled.  But many, many people pre-ADA and even sometimes today, have been kicked out of restaurants for being disabled.  Should we thank each and every restaurant owner we meet for not kicking us out of their fine establishment?  Of course not.  We should expect the same level of respect and service given to everyone else.  Respect and equality - for all people - should be the rule, not the exception.

Grateful implies that people are doing me a kindness by treating me like a human being, by allowing me to live out in the open and intermingle with the “normal” people.  And this is so often where disabled people run into trouble, being accused of “biting the hand that feeds them” and not being properly grateful for the services they receive.  This sort of behavior reeks of condescension, expecting us to “mind our manners” and “say please and thank you” like naughty children.  And we say it, even when the services are sub-par or even outright abusive, because we are always mindful of the fact that when you depend on the services of other people in order to exist, those services could easily be not provided at all.  I will not be grateful for common courtesy and basic human decency.

So I will not say thank you to the ADA today.  Instead, I will turn my gratitude to those activists who recognized injustice when they saw it, and fought for us to get the rights that we have always deserved.  I will revel in my pride.  And on Saturday, I will celebrate our culture, our history, and our law in Philadelphia, among so many others who are united in our vision of justice for all - no strings of gratefulness attached.

Read More

Being Disabled in Public

So I mentioned in a previous post that I had the privilege of attending a national vigil for people with disabilities who have been murdered by parents or caregivers, back in March.  What I didn't mention was the adventure that ensued after the vigil.  My friend Lydia, of Autistic Hoya, escorted me around DC because I had absolutely no idea where I was going.  On the way back from the vigil, we encountered an extraordinarily ableist and frankly, just plain rude employee of the DC Metro (DC subway system), who harassed us and repeatedly accused Lydia of being drunk. 

Lydia recently posted about the experience on her blog, because it's taken this long for her to laugh about it.  If you've ever wondered why we are so adamant, if you've ever thought that no one really gets discriminated against for being disabled, you need to read this.  This is what we, as disabled people face by being disabled in public.

Read More

Sign my petition demanding that Urban Dictionary remove their ableist definition of CEREBRAL LOLSY and implement a policy of removal for all prejudcial content on the site!!

Urban Dictionary's definition of CEREBRAL LOLSY is cruel, bigoted, and misguided.  Please sign my petition and share with all your friends and networks!!

Read More

Help! (I Need Somebody, But You Do Too)

Today, my friend Savannah posted something on her blog, about how she has trouble spelling, remembering numbers, etc.  And she mentioned that she embraces that she needs a copy-editor for some projects.  I commented on her post when she posted it to Facebook, saying that I'd be happy to help if she ever needs a copy-editor.   She thanked me.

There's a little twist to this story, though.  Savannah is Autistic and has various other disabilities, including learning disabilities.  Whenever you throw disabilities into the mix, people are apt to praise the helper above and beyond for being so patient and caring and saintly.  Even the helpers themselves tend to get offended if they think we're not properly grateful for what they give us.  We, the passive disabled people, are expected to fall at the feet of the angels so kind enough to help us, and express profound gratitude.  Even if that "help" isn't helping at all.  Even if that "help" is making it worse.

Let me make one thing clear:  I don't help my fellow disabled people because I'm looking for accolades.  I don't do it out of some twisted sense of duty, of helping the "less fortunate".  I do it because they're my friends and I want to.  Simple as that.  And I expect my friends to help me for the same reasons.

There is a certain quiet dignity to "cripples helping cripples" as I call it.  There is no shouting, no neon sign calling attention to the helpful act.  When a person needs help, another person helps, without fanfare.  Everyone involved does what they need to do, without expecting a cookie for it.  Everyone recognizes their own strengths and weaknesses, and everyone fits together, making up for where another may struggle.

I've been a cripple helping cripples since before I could put a name to the feeling, since before I knew that we as cripples are perpetually accused of not being "grateful" enough.  I started going to a camp for physically disabled children when I was thirteen years old, and as one of the more mobile campers in my bunk, I started helping my bunkmates whenever and however I could, just because I wanted to.  For seven years, I earned the nickname "Junior Counselor", and every girl in that bunk knew that if they dropped something on the floor that they couldn't reach, needed someone to pull their covers up when they were in bed, or required a change of batteries in their CD player, they could call me.  And vice versa, when I needed someone to tie the strings on my bathing suit, or needed someone to lean on getting up from the floor, my fellow crip girls had my back.

I've only experienced that feeling of mutual respect and cooperation once or twice in an "inclusive" setting, with non-disabled and disabled people working together as one.  One of the strongest memories of that feeling I have is from January 2010, when I was invited to attend a National Youth Inclusion Summit to create what eventually became known as the I Am Norm campaign.  The Summit brought together nondisabled and disabled youth from around the country to create a campaign for inclusion.  But the inclusion that weekend extended far beyond the official creative process.  With scarcely a word, we all took over for each other, pitching in where we could and accepting help from someone else where we couldn't.  In less than 48 hours, we pushed each others wheelchairs, carried each others breakfast plates, and generally helped each other out, not as caregivers, not as parents or teacher's aides, but as colleagues, comrades, and friends.  We didn't expect anything in return.  We didn't feel obligated to provide anything.  We did it because we wanted to.  To this day, that is my litmus test for inclusion.  You can stick nondisabled people and disabled people in a room together, but it isn't real inclusion, true inclusion, until the two groups see each other as equals and offer mutual respect and cooperation.

I wish that feeling was widespread.  I really do.  And I will do anything in my power to make that happen, make worldwide, authentic inclusion a reality.  But for now, I seek that respect and collective access* that I so desperately crave in crip-dominated spaces.  Sometimes, it even takes me by surprise.  I forget that people with such diverse and different disabilities all know that concept, on a instinctive level, of cripples of helping cripples.  Sometimes, even when our community is mourning, we unify to mourn together, and to help each other.  I had the privilege to attend a national vigil in Washington DC, mourning people with disabilities who have been murdered by parents or caregivers, in late March.  The vigil was candlelit, meaning that at one point during the vigil, all the attendees were encouraged to take a small tea candle and light it in solidarity.  With my poor motor skills and hand-eye coordination, I could see this going very, very badly.  I told Savannah as much, and without batting an eye, she offered to light my candle for me.  With her help, I was able to participate fully in the vigil.  She helped me, and now I'm helping her.  As friends.  As equals.

Help should never be onesided.  It should never be withheld or deliberately misapplied as punishment or threat. Help should be like a river, flowing freely in both directions.  Because disabled or not, everyone needs help sometimes.  I know I do.   Don't you?

_____________________________________________

*If you want to help an awesome group that follows these very principles, check out Creating Collective Access.  They're a group that is dedicated to making the Allied Media Conference more crip-friendly and accessible for all.  In their own words:

"We are building on past work at the AMC  to create a sustainable model for crip-led, community-supported access. By building relationships, care, crip/disabled solidarity and solidarity with allies we are empowering those who have been traditionally marginalized, especially queer and trans* people, women, and gender non-conforming disabled/chronically ill people of color. We are resisting the individualization of access in movements and envisioning new ways of building community and being in movement spaces."

But CCA needs your help to get the AMC this year!  Check out their indigogo page and donate if you can!  Help make collective access happen!

Read More

Just because it's ableist, doesn't mean it's bad.

I see the word ableism getting flung around a lot lately.  Most of the time, it’s justified ableism.  But people toss it at others like a knife.  Like a weapon.  Like it’s a word that’s meant to hurt.  And then the recipients, the one who are being informed of their ableism, get offended and very hurt, because the connotation associated with all these -isms is that they’re bad, very bad and if you’re an ableist, then you’re a horrible horrible person who needs to go sit in a corner and shut up.

Ableism doesn’t mean you hate disabled people.  It doesn’t mean you’re an evil person.  It doesn’t even mean you think disabled people aren’t capable of anything, although all of those qualifiers can certainly fall under ableism.  Ableism is the system of oppression that faces disabled people in our society, a system that marks disabled people as inferior and most importantly, other.  It doesn’t have to be done with malice to be ableism.  It doesn’t even have to be done with conscious intent.  Ableism is separating society into us and them, sequestering disabled people into this category of not-entirely-human, mythical type people that are: a) so sad and tragic and/or b) sooo inspiring!!

Ableism is dictating that there is a right, a ”normal” way to be, and disabled people aren’t it.  Ableism is merely “tolerating” us instead of accepting us for who we are and embracing the differences that make us unique.  Ableism is preaching that diversity makes us stronger, and then conveniently leaving disability out of that equation. Ableism is believing that we have a lesser life, that we suffer, because we are disabled.

Ableism is “otherizing” us.  Ableism is using language that really has been used over generations to attack disabled people, to tell us that we are not normal and as such, we are less than human.  And ableism is using that language without any idea what it has done, how many people it’s hurt, because society doesn’t want us to know how, in a society that’s supposed to have conquered discrimination the way we conquered countries, millions and millions of people were systematically threatened, bullied, and slaughtered.  Ableism is never speaking about disability history, never even knowing that there is a history, because our history is not considered history.  At best, our struggle for rights is largely viewed as a cute little adolescent rebellion, complete with whining protests and stomping of feet.  At worst, it is completely wiped from the collective consciousness, because the world doesn’t want to see us, hear us, acknowledge our existence beyond using us, our stories, as a tool to make the privileged feel better about themselves.  Ableism is using us as scare tactics, as examples of what you don’t want to be.  Ableism is assuming that our lives are inherently less worth living than yours.

Ableism is having only one definition of disability, and only viewing a disabled person as one way.  Ableism is calling the rest of us fakers and benefit scroungers, because we don’t fit your definition of disability.  Ableism is cutting the services that we need to survive.
Ableism is putting disabled people in a box, a box that is never opened and has very clear edges.  Ableism is never recognizing that you or someone you know may be disabled, because they have a productive life.  Ableism is thinking that it is okay, even commendable, for disabled people to want to die, because our lives are not worth living.  Ableism is killing us before we have the chance to live, all because of a pre-conceived notion of what our lives will be like.

Ableism is warping the public notion of an entire group of people as “so smiley and happy all the time!” Ableism is reducing us to a caricature of human beings, painting us all as one shade of a color, when in fact we are as diverse as any other group of people.  Ableism is dividing a diverse community into “high functioning” and “low functioning” and deciding that only those who fit your idea of “high functioning” can possibly have anything to say.  Ableism is defining disability as solely an unfortunate happening, and not recognizing the social and cultural factors that oppress us.  Ableism is denying that you have privilege, that you can feel safe, because you are nondisabled.  Ableism is a world that is centered on the nondisabled, instead of being welcoming for everyone.  And truth be told?  Ableism is claiming that there is no ableism.

You don’t have to know that ableism exists to be an ableist.  Nor does being an ableist mean that you are a horrible, soulless person.  Being an ableist just means that you have privilege you need to acknowledge, and patterns of thought that you need to change.  So what should you do if someone calls you out on your ableism?  Take a step back.  Reflect on your privilege and what you said or did.  Recognize why someone may take offense at that.  If you don’t understand why it’s ableist, don’t start pointing fingers at the other person, claiming that they are oversensitive.  Ask politely, and think on their answer.  Apologize, and learn a lesson.  You are not evil because you are an ableist.  You are simply an ableist.  So take the opportunity to learn about your own privilege.  Hopefully, you’ll come away knowing more than you did before.

Read More