Tuesday, February 26, 2013

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.

Saturday, February 2, 2013

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.