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