Sunday, January 13, 2013

Matters of Life and Death: Exploring Assisted Suicide

In response to this BBC article on assisted suicide and this post from my friend Shin.  Note:  This post is written from an American point of view in response to an article that was aimed toward a British audience, and as such, may contain some inconsistencies.

The idea of assisted suicide is a very, very slippery slope in my opinion - not that I don't approve of people having the right to make their own choices as to when they've had enough, but it could lead to lawmakers and other people in positions of power deciding that people with certain conditions or with a certain degree of severity are not worthy of being alive based on some subjective measure of "quality of life".  We've already seen it, with disabled people (particularly developmentally disabled people) being denied heart transplants, kidney transplants, etc. because doctors feel that the lives of non-disabled people are more worth saving than disabled people.  I'm very scared that the personal choices of disabled people will be co-opted to make assisted suicide a choice on the part of others "on behalf" of the disabled person.  Again, it's already happening.  Robert Latimer, who murdered his daughter Tracy in 1993, told police that he could not bear to watch his daughter suffer.  The judge who exempted Latimer from the minimum sentence for second degree murder called it "compassionate homicide"

Tracy Latimer had CP, just like me.  I live in fear of someone, someday, deciding for me that my life is not worth living.  Where is the dividing line?  Because I can walk, because I can talk, does that mean I'm somehow exempt from someone trying to kill me?  Proponents argue that it should only be used with people with the most "severe" disabilities.  What defines severity?  Functioning labels are arbitrary and absurd.  And one person with the exact same capabilities as another may enjoy life far more, for a myriad of reasons.

Not to mention quality of life is not solely defined by internal factors.  As I mentioned above, two people with the exact same capabilities (if such a phenomenon even exists in the wide world of disability) could have diametrically opposing views on their quality of life.  I postulate the situation of two people of the same age with the exact same disability, exact same capabilities and abilities.  One could live independently, with a power wheelchair and lift equipped van, while directing a team of qualified and reliable personal assistants to manage their daily care.  The other could still be living with their parents, stuck using a manual wheelchair that they are unable to propel independently, reliant on their parents or unqualified personal assistants for their daily care.  They may also be effectively homebound, without a lift-equipped van or predictable public transit in their area.  I consider the first person to have a far better quality of life, and these external factors can have a tremendous effect on a person's perception of their own quality of life. 

Our perceptions about assisted suicide and quality of life are also heavily influenced by societal and cultural norms.  In the Star Trek: The Next Generation episode "Ethics", Worf attempts to convince his friends to assist with his suicide.  Because he is a Klingon, part of a warrior race, he sees no honor in his condition, and desires to die.  It is ingrained in his culture that Klingons must be physically strong, honorable, and able to fight.  Although not quite to that extreme, our society has a similar credo.  One of the biggest myths in our society is the myth of independence.  Our culture pushes the narrative that we must pull ourselves up by our bootstraps, rise from the ashes of adversity by the skin of our teeth.  Anything less is seen as weak - and weakness is taboo.  In fact, the Klingon society, or at least those morals, can be seen as a hyperbole of our own society, which prizes physical strength and muscularity.  These ethics can even be seen in the reflection of our own thoughts and decisions.  Shin, for you, you say the dividing line (at least part of it) is not being able to wash yourself or feed yourself.  I was not able to shower myself until at least age 15, and needed someone to help me get out of the bathtub for a time after that.  Despite that, I had a fine quality of life.  I know people who can't dress, shower, or feed themselves and still have a fantastic quality of life.  I realize, of course, that each person's definition of "quality of life" is different, but it seems to me that our fears about what will happen when we can no longer take care of ourselves stem from a society that prizes self sufficiency above all costs.

Assisted suicide is a complex issue, with many different facets.  I urge both British and American citizens to think about assisted suicide in a new way - how can we make our lives better, instead of our deaths?  Maybe if we improved the experience of life, so many people wouldn't be seeking the option of death.

Thursday, December 20, 2012

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

Sunday, December 16, 2012

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)


Friday, December 7, 2012

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 doesIncluded 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

Monday, December 3, 2012

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

Tuesday, October 30, 2012

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

Tuesday, October 23, 2012

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.]