Sunday, July 27, 2014

The Power of Choices

When I go to a movie theater using my chair or walker, or when I go with wheelchair using friends, we usually can only sit in three or four different spots.  In smaller movie theaters, there is often only one spot that can accommodate a wheelchair user, resulting in an awkward dance of politeness or perhaps a duel to the death when - god forbid - there's more than one wheelchair user wanting to see the movie.  After my best friend (who blogs at The Squeaky Wheelchair) was forced to wedge herself sideways behind the back row of seats, nearly knocking off a fire extinguisher in the process, because the lone wheelchair spot was already occupied, we resolved to never go back to that local theater again.  But others aren't much better.  Sometimes the wheelchair seats are clustered together in one row, making those who need accessible seating feel like we've fallen into some sort of cripple ghetto.  Other times, in big multiplex theaters, there are theater rooms that aren't accessible (Roosevelt Field movie theater, I'm looking at you).  If the movie you want to see is in that theater, sorry, you're out of luck.  And of course no one ever thinks to mention when you're buying your ticket that the theater you're going to is up a flight of stairs...

It's not just movie theaters, either.  When I get on a public bus with my wheelchair, there is a grand total of two spots where I can sit.  Both of those spots require that the bus driver ask anyone sitting in those seats to move and then fold up the seats to create space for a wheelchair. People are usually quite annoyed when they are asked to move.  It's almost like there's no other spot for them to sit....oh wait, that's me!  I don't know of any other minority group that has to force people out of their seats just so they can ride the bus.

And if I'm traveling with, say, my boyfriend, who is a fellow wheelchair user, the absurdity is doubled.  Two wheelchair users, two wheelchair spots on the bus.  You do the math.  There is no room for error, no room for any other wheelchair users.  My boyfriend and I have sat at a bus stop and waved two perfectly good buses on without us, because the bus already had one wheelchair user on board.  On the flip side, I have seen drivers turn down other wheelchair users at a stop because they already had two wheelchair users taking up the spots.  And I have felt an irrational squirm of guilt for taking up one of those precious spots.

Sound familiar?  Black people didn't stand for being relegated to the back of the bus.  They weren't simply grateful that they could ride the bus at all.  They recognized what was happening as segregationist and discriminatory.  And they made change happen.  Have we become so complacent in the post-ADA generation that we fail to remember that we deserve the same rights as everyone else?  Have we become hangers-on, clutching at the coattails of the able, thankful just to be breathing the same air as them?

The power of able privilege is the power of choices.  You can sit in this seat or that seat.  You can sit in the front of the bus or the back.  You can go to that subway station or this one.  You can watch this movie or that one, never mind if they have captions or not.  You can read that book or this one, regardless of whether the book is available in an alternate format.  You have the luxury of moving through a world that presents an endless array of choices to you.

We have fought for and won our rights.  Now it's time for the post-ADA generation to take up the mantle of another fight - the fight for the right to have choices.

Thursday, July 24, 2014

The Trouble With Ableist Metaphors

"I was blind to the consequences."

"You need to learn how to stand up for yourself."

"Her pleas fell on deaf ears."

I'm not usually one to language police other people.  There are a few terms that I absolutely despise (such as the r-word or "wheelchair bound") that I will usually make a fuss over.  Then there are terms like "handicapped" or "special needs" that make my skin crawl, but aren't bad enough, in my mind, to the point where I will speak up.  I need to choose my battles carefully, and despite being a word nerd (I have now spent several minutes pondering over the grammatical structure of this sentence), language usually isn't one of them.

But I was struck recently when, in the course of emails back and forth about inspiration porn and ableism, a colleague used the metaphor "I was blind and now I see."  I'm sure he had the best of intentions and didn't even stop to consider the ableist nature of the metaphor - but that's sort of the point.  Ableism is so incredibly deeply ingrained in our culture that people use ableist language - yes, even people who should know better, I fully admit that I probably invoke these metaphors far more often that I should - without a second thought every day.  I'm not sure that happens with any other form of oppression (feel free to correct me if I'm wrong).

But wait!  I should stop being so literal, shouldn't I?  After all, it's just an expression!  No one actually means them!  Which is all well and good, but as my dear friend K says often, intent is not magic.  But the problem comes when we take both the literal and metaphorical definitions and step back to critically analyze what we mean when we say such things.

The problem with metaphors like "I was blind and now I see" is they overwhelmingly position the disability as the negative.  When you're "blind to the consequences", when your voice "falls on deaf ears", when you need to "stand up for yourself", those are all negative situations that should be rectified.  In contrast, having your "eyes opened", being "all ears" and "standing your ground" are situations that are generally applauded.  Sadly, I never hear anybody being told to "sit their ground".  Disability is synonymous with lack of insight, inability to communicate and not having the power or the intelligence to have agency over your own life.  Sound familiar?  Those are all stereotypes that are associated with all kinds of disability.  And now you start to see where, perhaps, the metaphors came from.

I'm not saying that everyone should automatically cut these types of metaphors out of their vocabulary.  What I am saying is that people need to stop and really think about their intended meaning - and then think about how the metaphor portrays disability.  If the metaphor is one that positions ability as positive and disability as negative, you may want to consider another term.  Because that's the great thing about language - the possibilities are endless.

Wednesday, July 2, 2014

R-E-S-P-E-C-T: Find Out What It Means to Me

When I was being forced out of the education program at my school the spring before last, during a two hour meeting with both my adviser for the field experience portion of the program and my overall adviser, I was told, among many other things, that I was, and I quote:  "on the verge of being disrespectful to two women in this room who have PhDs in Education".

Disrespectful!  They were the ones telling me to change my major or graduate without teaching certification.  They were the ones telling me I was "belligerent" and that my students would not respect me if I could not stand on my feet to teach a lesson.  They were the ones who had upset me so much that I spent the entire meeting sobbing.  They were the ones who were effectively telling me that I could not be a teacher.  And yet, somehow, I was the one being disrespectful to them.  It was like their magical PhDs somehow shielded them from being the ones in the wrong.

Let me be clear, respect is a two way street, in my view.  No one is automatically entitled to respect, regardless of age, job position, or familial relationship.  Or maybe it would be better to say I respect everybody - until they disrespect me.  Once you disrespect me, all bets are off, because you have shown you are not deserving of my respect.  I will not waste my respect on someone who doesn't deserve it.

And in many ways, my views on respect are shaped by being a woman with a visible disability.  Society at large does not respect me and my body.  I am expected to submit meekly to the non-disabled population, who, after all, are just trying to "help" me.  I am expected to be grateful when I am able to go out and live my life like any other 20-something, because to accommodate me means work for other people.  Yesterday, while my boyfriend (also a wheelchair user) and I were out and about in NYC, we experienced so many ableist microaggressions we lost count of how many there were.  These included, but were not limited to:

  • going into my school and having the security guard ask us if we were going to disability services, despite the fact that I had said at least twice previously that I wanted tech support.
  • being interrupted in the middle of a conversation with another friend (also a wheelchair user) and being told that if we moved, we wouldn't be blocking the way (note that no one else was told they were blocking the way)
  • approaching a subway elevator and having a woman who was also waiting for the elevator go in a shocked tone:  "Oh my god, two of them!!!" When I pointed out that wheelchair users do actually go places (shocking, I know), she tried to defend what she said.
  • being told, randomly, in the subway station, that I would be cured if I ate natural foods
(On a side note:  My last boyfriend, while also disabled, visibly presented as much more able-bodied than my current boyfriend.  It's interesting to see the difference in reactions.)

This all happened within the span of 12 hours, and while yesterday was a bit extreme even for my life, these type of things happen to me EVERY. DAY.  You can see how that might wear down one's patience.  Hence, why I may not always come across as the nicest or most respectful gal on the block.

Respect, to me, is earned, not given.  I feel I have a right to be somewhat wary of people in a world that does not view me as a human being with the same feelings and desires as anyone else.  I am, of course, always joyful when it turns out I was wrong, and someone treats me well.  It is sad that I have come to view basic human decency as a cause for celebration.  Perhaps I am a bit jaded.  

You want to be respected?  Show me you respect me first, because I cannot operate on the assumption that you respect me when so many people don't as a matter of course.  I don't care who you are.  If you respect me, I will respect you.  Simple as that.

Wednesday, May 28, 2014

#YesAllWomen: The Life and Times of a Vulnerable Woman

I am a vulnerable woman.

I don't like saying that.  I prefer to think of myself as able to handle anything that comes at me, and someone who does most of the normal things a 21 (almost 22) year old woman would do.  Vulnerable conjures up images of needing to be protected.  I don't need to be protected, or so I say.

But facts are facts, and the fact is that I am a visibly disabled woman.  When I am out in the world, I use a cane, a walker, a power wheelchair/scooter or a combination.  I can't move fast, especially when I am nervous or scared.  I have trouble getting up from the ground without anything to lean on.  My balance is nebulous, at best.

In short, I am the perfect target for a predator - an easy target.

In some weird ways, this has protected me.  Most guys don't look twice at a cripple, because we're viewed as damaged goods.  I've never been cat-called.  "Sexy" clothes usually take too much energy for me to put on (I'm a jeans and t-shirt kind of gal), so I don't usually have to worry that men will take my clothing as an invitation.

But on the flip side, being a visibly disabled woman means that my body is a free-for-all.  Since the day I was born, my body has not belonged to me so much as it has belonged to a countless parade of doctors, therapists, and even people on the street who think it is acceptable to ask about my body, make comments about my body, touch my body and move parts of my body.  My body and its history are seen as public domain.  I have been asked variants of "what happened to you?" by random people (usually men) in smelly train station elevators, in cabs, and on the street.  My body is stared at, pointed at, laughed at.  Paratransit drivers will, without my permission, physically pick up my arm from my wheelchair armrest in order to fasten the straps, rather than asking me to move my arm myself.  Even other women think it's acceptable to ask intrusive questions about my body and touch my body, often with the intention of "helping" me.  In the pecking order, those of us with visible body differences are among the lowest of the low.

Disabled women, like nondisabled women, are used as tools to make men feel good about themselves.  Only in our case, it's disguised as "help", and it's not limited to just men.  When we complain, we are told that they were only trying to help, that we are ungrateful for not accepting the help heaped upon us, even if it was no help at all.  Mundane, every day activities such as dressing or using the bathroom become power struggles, one where we have to "earn" the help we need.  We must be nice and polite and demure, even when our rights are being violated, because the world feels we are not entitled to our anger.

Again, the crucial similarity between the experiences of all kinds of women here is that it's never about the person whose body you're touching.  It's about the one with the power, and the one without the power exists solely to validate the other person's feelings.  This was the crux of the Isla Vista shooter's problem - he made it all about him.  Sure, what he did was extreme, but do we not see how that narcissistic mindset plays out in thousands, even millions of interactions between the powered and the powerless every day?

No one has the right to touch anyone else's body without that person's permission.  But from an early age, disabled women, particularly physically disabled women, are taught that their bodies are the property of others.  That it doesn't matter if you're hurting - and that, in fact, if you're hurting, it's probably a good thing.  Our bodies cease to be ours and are transformed in a litany of medical and scientific jargon and scribbled notes on pieces of paper.  We are indoctrinated to believe that our job is to lie there passively, and be good little rag dolls while our bodies are being yanked every which way.  We are not given agency over our own bodies.

That, combined with the natural vulnerability of many disabled women, makes us ideal targets for abuse.  And it shows.  According to a national survey done in 2012 on abuse and disability, over 70% of people with disabilities who responded to the survey had been victims of some kind of abuse.  Only 37.3% said they had reported the abuse to authorities, and the perpetrators in less than 10% of reported cases were arrested. And because we are so often directly dependent on other people, we are putting ourselves in potentially abusive situations every day.

#YesAllWomen needs to mean all women.  We cannot keep pretending that the experiences of queer women, women of color, and/or disabled women don't exist, or that the experiences of straight white able women somehow trump the experiences of marginalized women.  In truth, all our stories should be given equal weight.  We have far more in common than we think, and we are all fighting for the same thing - the power to have agency over our own lives and be viewed as human beings, rather than playthings for the enjoyment of men.  If we unite, we will be infinitely stronger, and hard as they may try, no man will ever silence all of us.



"what i would say if you would listen

don’t cut off the hand that feeds you, you said 
another one of your attempts
to reduce me
to a small, weak burden dependent on you

it’s not my job you’d announce 
with your cold glare 
watching me squirm and suffer 
when all I wanted to do was go to the bathroom 

you made me afraid to ask for help 
that I knew I deserved 
it was your job 
because you are human 
and so am I 

your words 
that belittled me 
still chill me to the bone 
what did you gain by hurting me? 

i am stronger 
and somewhere in my heart 
i forgive you 
but i refuse to forget 
and now 
i want you 
to listen 
to my words 

you were never the hand that feeds me 
because i feed myself 
and no one will ever 
have that power over me 

and for all you made me 
feel small inside 
i kept my dignity 
because it wasn’t yours to take 

remember that, remember me 
the next time you are careless 
with things that 
don’t belong to you"
-What Would I Say If You Would Listen, a poem by my dear friend Kathleen of The Squeaky Wheelchair

Wednesday, April 30, 2014

One Year Ago: What Ableism Didn't Do

(This is my second post for Blogging Against Disablism Day (BADD).  It's a follow-up to my post last year - you don't have to read the post from last year for this one to make sense, but it might be a good idea.)


Blogging Against Disablism Day, May 1st 2014


One year ago.

That's how long it's been.

One year ago I stood shaking from head to toe in a teacher's lounge bathroom trying not to throw up from sheer anger, shame, and anxiety.  One year ago, I listened to you call me belligerent for standing up for myself.  One year ago, I heard you say these exact words:

"I'm forced to conclude that either you've been making excuses, or you haven't been being truthful with us."

Do you remember those words?  Do you remember that meeting, that two hour meeting, where you said "This isn't about your limitations, you're the one who keeps bringing them up"?  Do you remember how hard I cried?  Do you remember telling me that you couldn't recommend me for student teaching?  Do you remember how you looked at me like I had three heads when I mentioned the Disability Services Office, and how you skated around the word disability so many times?  How I finally snapped and said "You can say "disability", you know.  I'm not afraid of it."?

I'm still not afraid of it.  I wasn't then, and I'm not now.

One year ago, I was effectively kicked out of the education major at a university that is fairly well known for their education program.  I was given a choice to switch my major or graduate without teaching certification.  Kicked out for no other reason than my disabilities.  Because a disabled teacher will apparently lose the respect of her students.

One year ago, ableism knocked me down.  But I got back up.  Here's what ableism DIDN'T do.

Ableism didn't stop me from getting my diploma.  In December, I walked across that stage with my head held high, silently shouting "FUCK YOU" to everyone who tried to stop me from getting to that moment.  I now possess a B.S in Education - which, given what happened, is an appropriate abbreviation.  I don't have teaching certification, but that's okay.  I have my own path.

[Short girl wearing maroon graduation robes and cap leaning on a hot pink walker with snowy bushes in the background.]

Ableism didn't stop me from getting a job - two, actually - as a freelance writer for two different websites.  It's not a usual job.  It's not a job with an hourly wage.  It's not a 9 - 5, go into an office job.  But it makes me a little money sometimes, which is more than I had before.  It gives me hope that someday, someone might want to hire me "for real".  Someday, I may be able to support myself.  And one of the very first things I wrote?  Was about how accepting the students in the classroom I did my field experience in were of my disability.  I said nothing about the attitudes of the adults.  Do you feel ashamed, that a group of third graders was more mature than you?

And finally, ableism didn't stop me from going for my dream degree - a M.A in Disability Studies.  I've been dreaming of this program since high school and nothing and no one - no, not even you - was going to stop me.  I'm nearing the end of my first semester in the program and I enjoy it in a way I never enjoyed the education program.  I look forward to going to class each week and I've made some great friends - and even found a boyfriend.  Finally, I get to do what I want to do.  No thanks to you.

I hesitate to say I've recovered, because I haven't.  I hesitate to say I've forgiven and forgotten, because I most certainly haven't.  So many nights over the past year, I've lain awake at night obsessing over the events that happened to me, the things that were said.  Trying to figure out what the fuck happened.  I have obsessed and cried and been unable to get it out of my head.  I have launched myself into a full scale panic attack a week before graduation because I knew I'd see you and the others who did this to me.  I have been traumatized, and it's sadly not the first time.  The scars on my soul will never fade completely.  I hope you're proud that you put them there.

But I've moved on and I'm kicking ass, in my own way.  Ableism did a lot of things.  But ableism didn't break me.  And because of that, you failed.  You thought you won, but you didn't, not really.  Because I bounced back, a little more bruised, a little more bloody, but I bounced back.  I hope someday, something I wrote lands in your inbox and you feel ashamed of what you did to me.  A sincere apology would be nice, but more than that, I hope you never treat someone the way you treated me ever again.  Change is a powerful thing, and I hope you learn lessons from the things you did to me.

I'd like to end with a quote from one of my favorite songs, Brave by Sara Bareilles.  I don't think it's a coincidence that both this song and Roar by Katy Perry - two absolute anthems against bullying, hatred, and oppression - came out the summer after I was forced out.  I don't believe in God, but I do believe in Fate - and I think Fate gave me the tools to get through my experiences.  As long as I live, I will fight to make sure no one has to go through what I went through.  You fueled my activist fires even more.

Your mistake.



"Nothing’s gonna hurt you the way that words do

When they settle ‘neath your skin
Kept on the inside and no sunlight
Sometimes a shadow wins
But I wonder what would happen if you

Say what you wanna say
And let the words fall out
Honestly I wanna see you be brave
With what you want to say
And let the words fall out
Honestly I wanna see you be brave"

Disability Is Not Your Get Out of Jail Free Card

(This is my first post for Blogging Against Disablism Day (BADD).  Also known as "this will be my BADD post if I wake up tomorrow and don't have the spoons to write the one I plan to write.)

There's a post that popped up today from a fairly well-known "autism parent" that talks about closed groups on Facebook where autism parents can talk about their reality, also known as "how awful their lives are".  I'll let said parent do the talking:

"This is a group that lives with “severe” or “extreme” challenges; aggression, self-injurious behavior, intensive behavioral challenges. Their lives are almost unmanageable. Their children (including adult children) require so much care, that these families struggle to make it through each day."

Said parent then proceeds to quote members of the group who say that they have wanted to kill their children, how difficult it is for them, etc. etc.

All throughout the comments parents applaud, saying this post was needed, saying that they, too, deal with these challenges, they, too, have wanted to kill their children.  They say that better services are needed and that they would do anything for a cure.  They mistakenly assume that autism acceptance means that autistic advocates and allies all think autism is a blessing, all rainbows and sunshine.

Autism isn't a blessing.  Neither is any other disability.  My disabilities are not blessings, nor burdens.  They just are.

I grew up around several people who were "severely" autistic.  I saw what they and their families went through.  I'm still seeing it.  I'm not oblivious to the very real struggles that disability can bring.  I go through them myself.  But that does not, and will never, justify hurting your children, or worse.

What is it about autism (and other disabilities) that serve as a metaphorical "get out of jail free" card?  When parents shake their babies to get them to stop crying, we (rightly so) protest and demand that these parents serve appropriate jail time.  When parents of autistic children abuse their children, we apparently demand sympathy and compassion for abusers and murderers.  Don't believe me?  Take a look.

This is a comment from an article about a man on trial for murder after shaking his baby daughter:

[Text reads:  "Hang him - but first shake him half to death!!!  What a smiling face he has so satisfied with what he did!  He makes me sick!!!]

And this is a comment from an article about Kelli Stapleton, who tried to kill both herself and her autistic daughter back in December.

[Text reads:  "People shouldn't judge this woman unless you've been in her shoes. Anyone who has dealt with a family member who has the same level of mental/emotional issues as this daughter can understand how the day-in/day-out stress simply wears you down. And there is no recourse in our systems for taking care of these people, the social safety nets have all been eliminated in cost-savings. It's a mess."]

See the difference?  It astounds me.

There is no denying that we need better services.  We need insurance coverage for AAC equipment, for programs that actually help disabled people, for personal care assistants.  We need programs that cater to disabled people's strengths, while helping them through their weaknesses.  We need sensory rooms galore.  We need an education system that's flexible and doesn't focus on meaningless test scores.  We need programs and schools and activities that are actually inclusive and welcoming toward people with disabilities.  We need treatments - not cures - that will help disabled people manage the aspects of their disabilities that do cause suffering or otherwise interfere with living a full and happy life.  Those are the kind of services we need and I am the first to say that the amount of services we have right now is sadly lacking.

But the need for better services does not, and will never justify wanting to hurt your child.  Wanting to kill your child.

Services and cures - they're two separate issues, they're completely unrelated.  Don't force them together.  Treatment is not cure, and some people may seek treatment voluntarily to better their lives.  That's okay. But when you're forcing treatment onto a child or someone can't communicate enough to consent, that's a problem.  Especially when that "treatment" is dangerous and done in the name of "normalizing" your child.

I'm tired of hearing about murders or potential murders.  I'm tired of murders being justified.  I'm so, so tired.  Please, make it stop.  My life is not your tragedy and neither are the lives of my friends - "high" functioning, "low" functioning, whatever.  Is it so damned impossible to comprehend that we might be happy with our lives?

I am happy.  We need more services.  It is not okay to hurt your children.  There are aspects of disability that interfere with living a full life.  We need acceptance.  These statements are not mutually exclusive.  Stop acting like they are.

Disability should not obstruct justice.  Disability is not your get of jail free card.  Period.

Sunday, March 30, 2014

I Am My Wheelchair and My Wheelchair Is Me

Today, a close friend called me with somewhat of an emergency.  Her wheelchair had suddenly given up the ghost, she didn't have a backup, and could she please borrow my scooter for a few days?

I, of course, said yes. I have my new powerchair if I need it, and as any plans I may have had were derailed smoothly by a bout of the chicken pox, I wasn't planning on needing either my chair or my scooter for at least another week.  Besides, my friend had an important meeting on Tuesday which she couldn't afford to miss. I was happy to help her out.

But I can't deny that it feels queer - queer in the "odd or strange" sense of the word - to know that someone else is out there, using my scooter.  That scooter was the first piece of true independence I ever had, the revelation that I could sit and move at the same time.  It was with me though times of great happiness and times of great sorrow.  It literally propelled me through some of the most difficult moments of my life.  It carried me through so many adventures during my three years of college.  It got stuck in the snow, tipped over on a rocky path, and explored the far reaches of campus and town.  My scooter was my chariot, my scooter has a history, and right now it feels like someone else is wearing my skin.

The title of this piece makes me uneasy, because I don't want people to make the assumption that I am defined by my wheelchair alone - of course not.  I am not the human embodiment of a wheeled mobility device.  But I can't deny that my scooter - and my other mobility aids, for that matter - take on sort of lives of their own by being mine.  I know them all, all their little quirks and creaks.  And while I"m still getting to know my new chair, I have no doubt that I'll come to know it just as deeply as I know my scooter.

So when I or someone else tells you not to touch their mobility aids without asking, when we become uncomfortable when you commandeer our wheelchairs to play racing games, when it takes us time to break in a new aid or when we cry to see our old ones go - please respect that.  Because our mobility aids are not merely machines, they are part of us, intertwined with our history and our lives.  Please, treat them with as much respect as you would treat us.  All our lives will be better for it.