Monday, January 28, 2013

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.

A fellow student

Monday, January 21, 2013

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.

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.