Sunday, September 22, 2013

Putting Education First

TW:  mention of the r-word, discussion of ableism in the school system

Back in high school, I habitually missed class.  Not because I wanted to, mind you, but because my bus was always late.  I took the short bus, the butt of immature teen jokes everywhere.  The retard bus.  The bus whose riders are commonly assumed to be drooling sacks of shit who don't have a brain in their heads.

Unfortunately, the transportation company seemed to share these views.  Every day was a gamble, waiting for the bus and wondering if it was going to show up today.  We would teeter on the cusp of late and not-late and wait til the last possible minute, when my mother, who worked in a school herself and would be late for work if she drove me to school, would haul me and my over-stuffed backpack into the car and speed off to school.  More than once, the bus would conveniently show up as my mother was pulling out of the driveway.  There would be no apologies, most times, from the driver and bus aide.  Sometimes there would be a different driver at the wheel entirely, with no explanation whatsoever.  Occasionally there would even be a random student sitting on the bus, who wasn't usually there, and no one would acknowledge the situation.  And then I'd just have to pray that we wouldn't take an unexplained detour to another school or place, because that happened more than once too.  My mother would come home from work, tired from a long day, and then she'd have to call the transportation company to complain about how they were late again, or how they didn't show up at all, or about how my driver was on his cell phone while driving.  Nothing ever really changed.

Once I got to school, depending on how late it was, I would have to go to the attendance office and try and explain why I needed a late pass, even though I wasn't late yet.  They didn't seem to understand that the lateness was inevitable, that I could not possibly drag myself up three flights of stairs (my school had an elevator, but it was dirty, creepy, and frequently broken.  Plus the proximity of the elevator to where I needed to go meant that it would take the same amount of time for me to drag myself up the steps as it would for me to take the elevator.), get my books from my locker, and go down a flight of steps to my classroom and still be on time for class.  By the time I finished arguing with the attendance dragons (erm, I mean "ladies"...), I would end up being late anyway.  My first period teacher would then yell at me for either being late or not having my textbook, because I'd skip going to my locker in a futile attempt to get to class on time for once.

During the school day, I was frequently pulled out of class for physical and occupational therapy.  Once my therapists realized that pulling me out of academic subjects wasn't a good idea, they started pulling me from lunch.  I'd either scarf down my lunch and rush to therapy, or bring my lunch with me to therapy and eat before starting my exercises, acutely aware that this was cutting into my already limited therapy time.  And my PT wondered why my "lunch" normally consisted of a chocolate milk and a bag of chips - it was portable, quick, and edible.  And that was if I had a lunch period at all, which wasn't a given.  So my therapists turned to pulling me out of resource room.  The resource room period that I had specifically written into my IEP to accommodate the need for extra time on tests.  Many days my therapists would come looking for me when I was trying to finish a test, and be annoyed that I hadn't shown up to therapy.  My therapy period would often run over and I'd be late to class.  Again.

My accommodations would often get messed up.  My test would get lost on the way to my resource room teacher's mailbox.  Assignments would be given that I simply did not have the motor skills for - like drawing a map of the world, for instance.  The students tasked with being my notetakers would decide they just didn't feel like taking notes for me that day.  My AlphaSmart, the keyboard that was my notetaking lifeline, would break in the middle of class.  Accommodations for standardized tests seemed especially prickly.  I was told that "Most kids who get accommodations don't take the SAT." The notion that I was both disabled and academically gifted seemed to boggle people's minds.  And these were the people who were supposed to be responsible for my education.

On top of all of that, I left five minutes early from each class to beat the hallway stampede and ensure that I didn't get trampled.  This averaged out to 45 minutes a day of academic learning I missed.  When you consider it was almost 4 hours missed per week, it starts to add up.  Frequently I would stay til the bell just to make sure I didn't miss anything important, risking my safety out in the wild high school jungle halls.  One teacher would constantly give out and collect homework after I left.  When pressed about it by my mother, she had the audacity to respond: "It's not my responsibility to remind Cara when to hand in her homework."

Despite everything, I graduated high school in the top quarter of my class, gained acceptance into a fairly elite college (though I ended up going to a less elite college), and earned enough AP credits to allow me to graduate college a year early.  I often wonder how much better I could have done had all those barriers not been in my way - barriers, it is important to note, had nothing to do with my actual impairment, but instead everything to do with the environment around me.  This is where the social model of disability comes in.  I had impairments in high school - I will always have impairments - but it is the societal barriers around me that actually disabled me and prevented me from reaching my full potential.

When and where did we get the idea that it is okay to give disabled students a sub-par education?  The Individuals with Disabilities Education Act (IDEA) states that all students are entitled to a free and appropriate public education (FAPE).  Was my education free?  Yes, and so was the therapy and other associated services I received - which is exactly why my parents didn't choose to have me go to therapy outside of school like many other disabled children.  We couldn't afford it.  But was it appropriate?  I don't think so.  Though many would say my high school education was a prime example of model inclusion, I tend to disagree.  My education was a dispirited attempt to show that my school was inclusive - nothing more.  I fear the same is true for many disabled children across the nation.

The education system in America is failing all children, but none more so than disabled children.  In our rush to secure equal rights and acceptance, we have skipped a crucial step.  We are arguing for inclusion, which is certainly a noble and just cause, and one that I advocate for often, but without having the necessary pre-requisites in place.  First, we must ensure that all children, including and especially those with disabilities, receive a quality education.  Inclusion means nothing if a child is not receiving a good education, which is, in fact, the very reason we have schools in the first place.  Therapy and other obligations overshadow a disabled child's day.  A quality education means all the tools are in place for a child to succeed in school - including safe and reliable transportation to and from school, an edible and nutrient filled lunch that's designed to help children focus, time to eat said lunch, necessary adaptations to curricula, and individual accommodations.  Notice that therapy wasn't in that list.  Therapy can be useful for minimizing pain and maximizing independence, but when it starts taking precedence over academics, there's a problem.  For children, school is their job.  We must ensure that they are allowed to perform the functions of that job to the best of their ability, just as they will be expected to do in the "real world" with a "real job".

It's time to go back to basics.  Let's put education first.

Friday, September 6, 2013

Murder is a Selfish Act

It is one thing to drown in your pain.

It is quite another to drown someone else in that pain.

I wish I didn't have to write this.  I wish this didn't keep happening.  But it does.

On September 3rd, Kelli Stapleton locked herself and her 14 year old autistic daughter, Issy, in their van, lit two charcoal grills, and waited to die from carbon monoxide poisoning.  Police discovered them both unconscious.  Issy is still unconscious in intensive care.  Kelli is facing possible murder charges, and rightly so.

The usual nonsense is being thrown about.  "The system broke and then it broke Kelli", "I feel bad for the father, his daughter is in intensive care and now his wife is facing possible murder charges", "We must have compassion for this mother, raising our kids can be extraordinarily difficult", "All she wanted to do was to put both of them out of their misery."

You know who I feel bad for?  Issy.  Because her own mother tried to MURDER her.

Yes, the system needs to be fixed.  It is not kind to autistic children or disabled children of any kind.  But I cannot sympathize with someone who thought the best option for her daughter would be death.

Kelli Stapleton made a selfish decision when she put Issy in that car.  She attempted to cut short someone else's life based on her own misery. That was not her choice to make.  But many are calling this an act of love, because she refused to leave Issy behind.

But Issy had a life, independent of her mother, as all children do, independent of their parents.  You can see her life, splashed across the pages of the blog her mother wrote.  She had friends.  She had a cat that she loved.  She had her own thoughts, feelings, and desires.  From the day we are born, we are no longer entirely a part of our mothers - we are out in the world, with our own individual identities, for better or worse.  Our parents must let us go, on many occasions in our lives, with the trust that they have provided us with enough to succeed in life - whatever the definition of success may be.  Kelli Stapleton could not cut that cord - and that's a problem.  If you cannot trust your child to have a quality life without you, you have failed as a parent - because part of being a parent is knowing that you have to let go. It's nowhere near easy, but it is necessary.  Kelli Stapleton didn't think about Issy's own life - she only saw her own struggles.  Seeing another's life only through the lens of your own is the epitome of selfishness.

People say that we should not judge until we know the facts.  But a mother tried to kill her daughter.  What else do we need to know?

Until and unless there is justice for the Issy Stapletons of our world, for the Alex Spourdalakis', for the George Hodgins' and the Tracy Lattimers, these tragedies will keep happening.  Because you can't get away with murder - unless your kid is disabled.

Monday, August 26, 2013

Awareness at what cost?

I recently had an unfortunate encounter with a graphic that snuck its way onto my Facebook newsfeed.  The picture, posted below, is of a green stiletto high-heeled shoe supposedly stomping, with the noise represented in a comic-book like burst.  In green text on the top of the graphic it says "Stomp Out", with "Cerebral Palsy" in fragmented black text on the bottom of the graphic.


When I, an actual person with CP, pointed out that stomping out CP means stomping out me, the admin of the page seemed confused, then defensive.  "No this does not mean to stomp out the person just  CP"


When I, again, pointed out that my CP is inseparable from me as a person, and used the hypothetical example of "stamp out femaleness", my comments were deleted and I was banned from the page.  So were several friends of mine who were backing me up.  Any and all "negative" comments - comments that didn't support a cure - were banned.   In other comments, the page admin and their supporters expressed disbelief that anyone would be against a cure.  CP was compared to cancer.


[March Is Cerebral Palsy Awareness Month:  "Everyone is missing the point here.  We are not stomping out the person just the CP.  Doesn't everyone want a cure?  I know I do.  I live here in NC and let me tell you they are working hard at Duke for a cure you can read about it on line.  I can't believe that this is taken the wrong way I don't see it like this.  Like I said before if you don't like what is posted don't respond and leave the site and don't come back.  There are differences of opinions here and I understand that but some of the comments are negative.  I am just trying to raise awareness if this offends you leave this is my site and I post what I want too."]

I'm blacking out the names and pictures of the supporting commentators, because I don't feel anything would be gained by putting their names and faces out there.  The page, on the other hand, is not blocked out, because people need to know which page did this.

[Why are people so simple minded??  They wouldn't say the same ignorant comments about stomping out breast cancer or epilepsy...It means we want a cure!   Why would someone NOT want a cure?  My son is 8 with mild cp and he can't run and walk long periods of time like other 8 yr olds.  Of course I Want to stomp out this cp so he can have no limitations.  Geez people, come on!]

Gee, maybe if you had actually READ my comments and not deleted them and banned me, you'd know why I don't want a cure.  My CP is no less a part of me than my gender or sexuality.  I literally DO NOT KNOW who I would be without CP - I have always had CP and I will always have CP.  A few weeks ago, exhausted, annoyed, and edgy about possibly missing a train, I told a nosy fellow elevator rider "I was born this way, I'll die this way, and I'm proud of it!" That pretty much sums it up.

And for the record?  Breast cancer KILLS.  Epilepsy?  Can also KILL.  CP does not kill.   Yes, co-morbid conditions like severe scoliosis or epilepsy may kill, but THOSE ARE NOT CP.  There is a world of difference between a condition that merely impacts the way your brain and body work, and a condition that WILL KILL YOU.

Notice that most of the commentators here are parents.  That should tell you something.


[Clint Berger:  Now that I see you don't have CP, it all makes sense.  Please stop silencing and attempting to speak for those of us who do.
March Is Cerebral Palsy Awareness Month:  I know I don't have CP but my sons do.  Not one but two.]

Being a parent doesn't give you authority over those who actually HAVE the disability you're talking about.  You are one step removed, we are none.  "I'm a parent" is not a valid argument against someone who has been living with these issues day in and day out for decades.  It's the same argument as "I have black friends so I can't possibly be racist!" No.  This is my life you're talking about.  You don't get to hijack it.  In case you haven't noticed, being a parent of a child with a disability and actually BEING A DISABLED PERSON are kiiiiiiiiiiiiind of two different things.

The admin proceeded to put up two different passive-aggressive statuses warning that any "negative" commentators would be banned.  Their supporters immediately ran to stroke their ego, again, mostly parents.  Some of the commentators declared their love and pride for their children, just the way they are.  Why then, are you supporting a page that wants to stomp out CP?

[I do not think there is anything wrong with my child who has cp!  She is perfect to me!  If this world wasn't full of cruel people and mean children who bully or tease the person or child who is different, then I wouldn't worry so much about my daughter.  She knows no different than how she is now.  I hurt when she hurts and she does.  I defiantly [supposing that was meant to say definitely] think more people should be aware of CP.  This page is brilliant & helps a lot of people!]

If you don't think there's anything wrong with your child, then why do you support a cure?  "She knows no different than how she is now".  Exactly.  Which is why I don't want a cure.  When you say "Stomp Out CP", you are stomping out your daughter.  You are stomping out ME.  By supporting this page, you are supporting the type of fear-mongering that makes people see our lives as a tragedy and something to be, yes, "stamped out".  When you support those types of organizations, those types of causes, for your disabled child, here are some of the things you want people to do to your child.  And obviously, as we saw, this is not limited to autism.  Do you really want your child to think their life is a threat to be eliminated?

You want more people to be "aware" of CP.  Congratulations, you've succeeded.  They're aware that CP is something bad, something that needs to be stamped out.  They're going to breathe a sigh of relief for their "normal child" and thank God that their family isn't afflicted with a terrible burden.  They're going to pity you and your family for being so unlucky.  This is the kind of environment your "awareness" creates.

What is your point with awareness?  Sure, people are "aware" of CP, in the same way that they're "aware" that the sky is blue.  It's a thing.  But awareness doesn't go deeper than that.  Awareness needs to be coupled with understanding and acceptance.  Otherwise, it's just shallow.  And that can be dangerous.  Here are some more important things you should be "aware" of.   (It's autism centric but can apply to other disabilities as well.)

As a parent, you are doing your children a disservice.  By spreading this kind of "awareness", you are telling your children that they are not worthwhile the way they are, that there is something wrong with them.  And by silencing the very voices that know what it's like to have CP, you are silencing and alienating the people that could help your children get along in the world.  We are like your child, more than you know, and someday your child will want to meet others like them, maybe even now.  Do you really think refusing to even hear us out will bode well for when your child asks "Why am I the only one like this?"?

You are making people aware of CP.  But at what cost?  Take a minute and think about the picture you're painting.  It's not a pretty one.

***Side Note:  "Stomp Out CP" is almost as horrifying as "Smother Autism".  And at the time morbidly hilarious because most of us can't wear high heels like in the picture or stomp.  I can stomp, but not wear high heels, actually.***

Addendum:  In response to the "Stomp Out CP" hoopla, one of my favorite people, Juniper, who's a disabled mother to a disabled daughter, created a satirical "Stomp Out Normalcy" page on Facebook, similar to Rachel Cohen-Rottenberg's "Neurotypical Awareness" memes.  Go check it out and share your stories of normalcy!

Monday, August 19, 2013

Tuesday, July 30, 2013

Dear God, If You Exist: Please Don't Cure Me

Dear God, If You Exist: Please Don't Cure Me - News - Bubblews

New post on Bubblews discussing the apparent phenomenon of the power of prayer "curing" a man with CP.  You can read more about it at http://www.parents.com/blogs/to-the-max/2013/07/30/autism/god-isnt-healing-my-child-with-cerebral-palsy/.

Feel free to like the Bubblews post and share it around!!!

Thursday, July 25, 2013

Don't Sanitize My Disability Justice

This may come as a surprise to some people, but disability justice doesn't mean "put ramps and elevators in", nor does it mean "hire the handicapped".

OK, so it means that a little bit.  Access is nice.  So are jobs.  But there are far more pressing and disturbing issues to deal with.  Just as the LGBTQ+ rights movement isn't exclusively about marriage, and the Black civil rights movement was not, and will never be, exclusively about voting, the disability rights movement is not exclusively about physical accessibility, or employment.

It's about people like us being murdered, and our murderers not only getting away with it, but garnering sympathy for finally putting us out of our misery.

It's about meetings where they try to explain to us that it's "not about [our] limitations".  Because they're so fucking uncomfortable with the idea of disability that they'll go to any lengths to avoid it, even avoiding the word.

It's about being accused of lying, of faking it, by a grown woman who is supposed to be teaching us how to teach kids like me.

It's about some disabled people being silenced, while others, the ones who are seen as bravely trying to overcome their disabilities, have their voices amplified.

It's about the deep-seated fears of people who don't want to be like us. It's about the consequences of those fears. It's about the mindset "better dead than disabled".  It's about equating death with disability, equally horrible outcomes. It's about newly disabled people wanting to die, and that being completely understandable, because in their minds disability is a living hell.

It's about denying ableism exists, when no one would ever dream of denying the existence of racism, or sexism.

It's about being the butt of everyone's jokes, and no one sees a problem with that.  It's about being seen as a problem, or a punchline, rather than a human being.

And therein lies the fundamental problem.  We've been working backwards all this time.  If we can't even be seen as human beings who deserve the same basic rights as everyone else, how in the world are we going to convince people that we need accessible buildings, or jobs?  I am a fucking person, do you see that?  Of course they don't want to give us jobs, or healthcare, or independent living, because we're not people.  It's our own form of slavery, wrapped up in pretty little bows that say "special needs", "differently abled", "handi-capable".  It's our own 3/5 Compromise couched in political and social bullshit.  Because as long as they can Other us, they can justify not treating us with basic human dignity.

You can't sanitize disability justice.  And you can't sanitize me, either.  Because I'm not a sanitized crip.  I'm spastic, fantastic, one of Those People taking the Big Bad Crazy Pills, anxious, depressed, mobility aid walking, rolling wonder.  I call myself a cripple and proud.  And I'm not even half as hardcore as some of my friends.

Ableism is insidious, as are all forms of discrimination. It gets inside your mind.  And to present a shiny, PC version of it is grossly ironic and unjust.  Discrimination isn't supposed to be neat and tidy - it's supposed to be messy, tangled, bringing to light issues that everyone would rather not be talked about.

So this is a plea - please don't sanitize my disability justice for your own comfort. Come back to me when you feel uncomfortable.  Because that probably means you're doing it right.

Monday, July 15, 2013

Dear Parent Advocates: It's Not About You

Dear parent advocates, parents of kids like me and so many more,

It's not about you.

Come to think of it, it's not about us either.

It's about society.  It's about reinforcing the status quo.  It's about which voices get amplified, and which voices get silenced.  It's about contributing to a world that is already hateful and inaccessible to people like us.

The world listens to you, did you know that?  "Special needs" parents (ironically, though this particular order of words seems to imply that the parents themselves have special needs, actual disabled parents, parents who have disabilities themselves, are often threatened with having their children taken away, because it is presumed that no one with a disability can possibly take care of a child) are often treated as saints for "putting up with" us.  "Special needs children" are regarded as "special gifts from God", which makes those who raise us some sort of Messiahs, humble servants of God.  It makes parents of children with disabilities larger than life figures, and just like our society's fervent fascination with the exploits of celebrities, we always love to hang on the coattails of those who are larger than life, cling to their every word.  Though disabled people themselves are often assumed to have triumphed over tragedy, sadly incompetence is presumed far more often than competence.  We then turn to the people who love these inanimate pieces of tragic inspiration, the people who are good and pure enough to raise them, their parents.  And who doesn't love a feel-good inspiration story?

So when you turn to the public airwaves and say that children like us are broken, are unlucky, that we have monsters in our brains, people listen.  And they internalize those narratives.  It's words like those that paint us as burdens, as lesser than nondisabled, "normal" children our age.  It's words like those that convince people that it's okay to subject their children to dangerous, untested treatment methods in a futile attempt for a cure. It's words like these that indoctrinate people into having sympathy for parents who murdered their children.  Because these words all give the impression that life with a disability is not really living at all.  Whether or not that was your intention when you thought those words, when you spoke them, when you put them out there for all to see, that's the impact your words have.  Intent is not magic, and your choice of words means everything.

There is blood on your hands.  You might want to clean that up.  Now that you know you have a permanent place on the stage of life and disability, it is up to you what you want to do with it.  You can either use your words to fuel intolerance, or to fuel acceptance.

Your choice.