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.