Dignity of Loss

Something that's talked about a lot in disability circles and special education circles is something called dignity of risk.  Basically, what that means is that we ALL must be allowed to make our own choices - good OR bad, within safety limits of course.  For example, let's suppose that a child with a disability has a full time, 1 to 1 aide in school.  One day, the child decides to go to the cafeteria to talk to his friends instead of going to class.  The child wants to cut class - should the aide let him?

The correct answer is yes.  The child needs to learn that there are good and bad decisions, and that our decisions have consequences.  Any other child would have learned the same lesson - they would have been reprimanded, given detention, suspended, what have you.  The punishment for a disabled child should be no different.  THAT'S dignity of risk.

A similar thought occurred to me today.  I watched in horror as a video of a high school basketball player passing the ball to an intellectually disabled player ON THE OPPOSING TEAM went explosively viral, complete with the requisite "warm your heart" and "inspirational" comments.  No one seemed to see anything wrong with it - except almost every disabled person I talked to.

I'm sure that player had good intentions.  I'm sure he had GREAT intentions.  He wanted to help someone score.  But that's not how the game works, and to completely abandon the structure of the game just so a disabled player can have a chance to score smacks of ableism.  It's condescending and asinine.  It sends the message that the disabled player isn't a real player, worthy of competition.  It says he's not worth seriously playing with.  It says he deserves "special" treatment, separate and distinct from the other players on the team.  If that athlete had passed the ball to a nondisabled member of the other team, he would have been a laughingstock.  Why is it different when the receiver is disabled?



You know what that boy could've done, if he wanted to help?  He could've treated the boy on the other just like any other opposing athlete - someone to be taken seriously, just like every other athlete on the opposing team.  He could've even taken it a step further and offered to teach the boy some basketball techniques after the game.  That would've demonstrated a quiet acceptance and respect.  It wouldn't have been blaring from the headlines - and it shouldn't be.  Acceptance - REAL acceptance, not tolerance - should not be noisy.  It should happen naturally and without fanfare.

Kids with disabilities need to learn, as well, that sometimes they will lose.  And there will be things they will not be able to do because of their disabilities.  I will never be an Olympic figure skater - and that's okay.  I don't want anyone "letting me" skate in the Olympics or giving me a gold medal I didn't earn.  I can't skate, and that's okay.  I have other things I'm good at - reading and writing and singing.  I know where my strengths lie.  So maybe basketball isn't that kid's strength.  I'm positive that he has other areas where he shines.  Cultivate strengths, not weaknesses.  And if that kid really, really, really wants to play basketball, don't just let him play on a team because he wants to.  Teach him how to shoot and dribble and pass.  Have him practice until one day, he might actually be good enough to play competitively.  Treat him like an equal, like a true member of the team.

The real world doesn't bend over backwards to cater to disabled people, and I would never want it to.  People with disabilities, parents and professionals alike need to learn a new term now, a term that I'm inventing - dignity of loss.  Just as you need to let people make their own mistakes, you also need to let them lose their own games.  Let them fail.  Teach them how to pick themselves up, and how to lose graciously.  Let them realize that the world keeps turning, even if you didn't win, even if you didn't score that time.  And finally, let them earn their own victories.  Success is so much sweeter when it's earned, not given on a silver platter.

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I'm 20 and I'm Tired

Inspired by/response to I'm Tired, by Robert A. Hall, mistakenly attributed to Bill Cosby.

I'm 20 and I'm tired.

No, I'm not just tired, I'm bone-weary, literally exhausted.  I deal with multiple chronic conditions that cause fatigue.  And if my conditions themselves don't completely exhaust me, the medication I take to control them and keep me a functioning human being does.  On top of all of this, I am a full time college student who is currently in classes six hours a day with only an hour's break for lunch which is frequently taken up by meetings.  Because I am the type of person that wants to change the world and mistakenly thinks she can take up the mantle of every cause that comes her way.  Starting in April, I will be out in the field helping to teach the children of America, and even that hour's break will shrink.

I'm tired of having my competency as a teacher questioned.  I'm tired of having my right to exist as a human being questioned.  I'm tired of people killing people like me and claiming it was in the name of "mercy".  I'm tired of being told to sit down and shut up, because I can't possibly know what it's like for real disabled people.  I'm tired of being told I'm inspirational for attempting to pull myself up by my broken bootstraps, because that's the only way anyone ever gets anywhere in this society, even if we don't have bootstraps to speak of.

I'm tired of hearing killings by Muslims attributed to religion; while killings by members of any other religion are attributed to mental illness.  I'm tired of all members of a community being painted with the same broad brushstrokes as a member who did something terrible.  I'm tired of things about us being without us.  I'm tired of that being considered not only acceptable, but ideal. 

I'm tired of being shut out of the normal teenage/college student jobs because I don't have the physical ability or stamina to do them.  I'm tired of having to depend on my parents for every drop of money that comes my way.  I'm tired of working working working, barely eating, barely sleeping, putting my health at risk, for nothing but a pat on the back and a meaningless grade on a piece of paper.  I'm tired of leaving the "former employers" section on job applications blank.  I'm tired of personal attendant services and transportation being seen as optional, instead of necessary.  And I'm tired of my friends on benefits being made out to be lazy, when that money is the only hope they have of survival.

I'm tired of the assumption that everyone can drive or own a car.  I'm tired of being dependent on agencies that have no idea what my life is like or what my financial situation is.  I'm tired of the world being so panicked over "benefit scroungers", that those who are truly in need are denied, and denied, and denied again.  I'm tired of having to be grateful that I was born when I was, otherwise I would've been shut in an institution.  I'm tired of remembering that places like that still exist.

I'm tired of the discourse on disability being purely medical, barely scratching the surface of what that word, that experience means.  I'm tired of words like "suffer" and "afflicted" and "disease".  I'm tired of disability as a cultural identity being ignored at conferences and events, when we're all shouting it from the Internet, begging, pleading to finally be heard.  I'm tired of being an afterthought.

I'm tired of privilege.  And yes, it is a thing.  I'm tired of playing life on hard mode.  I'm tired of our little splintered movements that don't include each other.  I'm tired of the irony; that nondisabled women fought for so many years to be seen as more than sexy, and disabled women are still fighting to be seen as sexy at all.  I'm tired of being scared to roll around campus at night, because I can't defend myself if someone attacks me.  I'm tired of knowing that I'm nearly the perfect target for an attacker - small, weak, female, disabled.  I'm tired of the world beating me and others like me to the ground, then being surprised when we're unable to rise.

Yes, I'm damn tired.  And I'm terrified to be 20.   Because if I'm this tired now, who knows how tired I'll be at 50, or 80, or 100?   I fear for myself.   I fear for the world.

And now, I think, I will go take a nap.

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An Open Letter to the Students of PSY160

Dear fellow students,

It has come to my attention that some of you drop PSY160, more commonly known around KU as Human Exceptionalities.  It seems the wheelchair experiment is a deal breaker for you.  You don't want to spend three hours going around town in a wheelchair, seeing how people react to you.

You don't want to do it?  You don't want to see the way people look at you, and then look through you, like you're some strange species of animal that doesn't quite exist?  You don't want strangers to invade your personal space and ask you intrusive questions?  You don't want to be "helped" by well meaning strangers who aren't helping at all?

Maybe you don't want to have to deal with ramps and elevators that sometimes don't exist.  You don't want to navigate narrow aisles that were never meant for wheelchairs.  You don't want to hear the clatter and feel the embarrassment in your cheeks when you realize that you've knocked over a display again, and you rush out before they realize it was you.  You don't want to be called a fire hazard and segregated in special cripple ghettos in the name of false "safety".  You don't want people to stop you on the street to tell you that they'll pray for you, or that you're inspiring, when all you want to do is go get your lunch like everyone else.  You don't want to roll through snow and ice, risking your safety while everyone around you makes tired jokes about speed limits and snow tires.  You don't want to feel like there's a constant spotlight above your head, marking you as different.  You don't want people to pity you.

You don't want to do it, I understand that.  Because I don't want to do it either.  But unlike you, I don't have a choice.  For the past three years, I have navigated the KU campus with the help of my trusty motorized scooter.  I have gotten my scooter stuck in snow that no one bothered to clear, making it physically impossible for me to get to class.  I have dealt with a broken dining hall elevator that limited my freedom to choose where I'd like to eat for weeks on end.  I have watched people yank their friends out of the way by their coat sleeves, as if they're afraid my scooter is a Mack truck intent on running them over.  And that's just on campus - back at home, where I roll (pun intended) with a large group of wheelchair-using friends, the effects are multiplied tenfold.  I would never choose a different life - I rather enjoy my life on wheels, and my scooter has given me more independence than I could've ever dreamed of before.  But I dream of a day when a wheelchair is nothing special, just another way of getting around.  I dream of a day where the same opportunities that are afforded to those of you who walk on two legs are afforded to me.  I am not asking for a cure - I am asking, begging, pleading for acceptance.

I am your peer, your classmate, your friend.  And choosing to drop a class rather than come to face-to-face with the struggles I face every day demonstrates the height of cowardice and reinforces your comfortable able-bodied privilege.  Because unlike you, I can't walk away.  I can't drop the class and go on my merry walking way.  As much as I don't want to, I have to face the tirade of bigotry, prejudice and ignorance that is spat in my face on a daily basis.  I have dealt with this in one form or another for twenty years.  And you can't possibly deal with it for a few hours?  I pity you.  You'll never see life through my eyes, even for the briefest of times.  I have gained strength out of necessity, and you will too, through this project, if only the tiniest fraction.  If you are considering dropping this class for these reasons, I ask you to please reconsider.  It might surprise you to experience how the other half lives.  Maybe, just maybe, you'll think next time you rush to "help" someone using a wheelchair without asking them first, or when you park in a handicapped space because you'll "only be a minute".  Maybe you'll change your attitudes.  Societal change starts with one person - be that person.  Help us blaze a new trail - accessible for all.

Sincerely,
A fellow student

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I Have A Dream

On this day....

On this day, a great leader was born and another was sworn into office.  On this day, two great men of color began journeys into history.  On this day, barriers were broken.  On this day, I have a dream.

I have a dream that on this day, sometime hopefully not so far into the future, our new president will roll up to that podium.  That our new president will take the oath of office in sign language, or have happy flappy stimmy hands while reading their speech.  I have a dream that one day, our nation will be forced to listen as our president makes their way through their speech with the thick accent of palsy.  I have a dream that our president will someday be -

out and proud DISabled -

the DIS means something, you know.

 I have a dream that someday all our children will play together, regardless of how they play.

That people will walk, roll, and crutch in harmony together, on their way to work, play, and everything in between.

I have a dream that the heavy black curtain of stigma and shame that smothered FDR will be drawn aside in favor of the blinding light of pride.  That my future children will not have to face questions about the competency of their upbringing, just because they have a disabled mother.  That all ways of experiencing the beauty of the world will be seen as equally valid and equally breathtaking.

I have a dream someday, the worthiness of life will be judged on the quality of it, not the abilities contained within it.  That, when life is deemed unlivable, steps will be taken to make it livable, not end it.  That those locked up in institutions will be set free, just as the slaves were set free so many years ago.

 I have a dream that we will practice acceptance, not just preach it.  That tolerating will be swept away in order to make room for accepting and embracing all our unique differences.  That all will be free to travel the earth and taste its sweet nectar.  That we will all drink from the fountain of equality.

I have a dream that someday, we will look back on our footsteps, crutch-prints and wheel tracks in the sands of time, and see just how far we have come.

On this inauguration day, on this birth day of a great change-maker, I have a dream.

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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.

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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

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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)

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