Follow by Email

Friday, October 14, 2016

Swimming Against The Stream: On Being Disabled in Higher Education

Throughout my educational career, I have encountered many people who seem surprised to see me, a young disabled person, succeeding in school. I’m thinking of my ninth grade math tutor who came to teach me when I was recovering from surgery, the one who said it didn't matter if I only learned 70% of the material because “it's not like you’re going to go to Princeton or anything.” I'm thinking of the proctor at my Advanced Placement exam who explained his confusion with testing accommodations by saying that "people like you don't usually take these tests." I'm thinking of a woman I didn't even know in the local grocery store who shouted to her husband, "This is one of the girls who went to college!” and how I knew, that being from a town where most girls went to college, she really meant “this is one of the disabled girls that went to college!” I'm thinking of countless others, now blended together in my mind, who have marveled "College? Wow!” in the baby voice, the one that sounds surprised I’ve done anything at all.

It hurts when others don't see the words “disabled” and “accomplished” or “disabled” and “educated” as compatible. It hurts especially when I think of all the bright, witty, incredible thinkers with disabilities who have their academic promise overlooked because of assumptions about the bodies and minds with which they live. This is not to imply that the only way to be “smart” or “promising” is to be traditionally educated or traditionally book smart. Disabled folks are gifted in all kinds of ways. Yet those gifts are frequently unseen, unappreciated, or undiscovered, because we live in a society that still does not expect us to have value. When the world tells disabled kids again and again that their success will be an exception not an expectation, it shouldn’t come as a surprise when many of those kids start to believe the lie.

To this day, now in my first year of graduate school, I contend with low expectations for people with disabilities. Just this week, a professor seemed overly impressed when I scored well on a test. Still, it seems, too many people don’t see “disability” and “success” as concepts that go together. And they are surprised that I’ve made it this far. In a way, it is amazing that I’m here. Amazing that before long, I will have a master’s degree. But not for the reasons you think. My ability to do well in school should be viewed as unremarkable, because a disabled person can be just as academically successful as anyone else. The world I want to live in expects us to succeed. Yet it is amazing that I am here when I think of all the barriers society has created for us. And when people act amazed that I have come this far, I don’t want it to be because they’re shocked that a disabled person can reach her goals. Instead, I want them to be shocked that we live in a country that still makes getting a basic education a battle for us.

It’s true that just 14% of people with disabilities[1] have a bachelor’s degree in this country. But don’t think for a minute it’s because they’re not smart, not capable, or not willing. Think about the fact that ableism runs so deep in our nation that being able to get in the door of my school feels like an enormous privilege. Think of what it feels like to fight for every minute of learning you’ve ever gotten. Think about trying to do your best in a system that doesn’t even give you a right to find out what doing your best means, because all you’re technically entitled to is “adequate yearly progress.” Then, maybe you will begin to understand that the scarcity of disabled people in higher education is not for lack of talent, or ability, or strength, but rather for lack of opportunity in an ableist world.

Given the chance to address every person who is amazed that I am here, I would tell each of them that I am too. Not because I am not qualified, but because the world tries pretty damn hard to put the opportunities non-disabled people take for granted out of reach.
The thought of finding the ramp to get into the ivory tower can be pretty exhausting when getting into a public bathroom is a treat. I would tell them I have had moments when I wanted to give up on my education, not because I doubted my intelligence, but because I was tired. Tired of fighting for a desk I could use. Tired of wondering if the bus would show up, and tired of knowing that if it didn’t, my complaint letter would probably disappear into a vortex of bus depot apathy. I’d tell them I have a list of things I could have, should have, might have fought harder for, if I hadn’t been so so tired. That swimming against the stream every day takes enormous energy, and that sometimes, if only for a moment, I needed to let myself float.

I’d tell them that if I didn’t have a mother who brought me to school when the bus didn’t come, came to school to help me pee when the umpteenth aide bailed on me, and displayed unending patience in the face of my horrific spatial skills, I may not have had the chance to finish high school, not for lack of ability, but lack of access. I’d tell them that in junior high, a string of incompetent aides made me afraid to go to the bathroom in school, and that I prayed with every fiber in my little 12-year-old being to stay dehydrated. How that string of incompetent and often cruel aides convinced me that it would be better if I denied myself water until my body was no longer thirsty. I’d tell them how in tenth grade, the gentleness of the right caregiver taught me slowly that I deserved to feel thirsty again, and to stop apologizing for my basic bodily functions. But relearning how to be kind to my body took time, and the tiny children’s water bottle I keep in my wheelchair still feels like a radical act. I’d tell them that I still think through every ounce I drink, because I can’t leave class to go to the bathroom and be back in two minutes. I’d tell them that by the time they see me sitting in class, I am all assembled, but behind the scenes, it really does take a village to brush my hair, dress me, bathe me, and do all the little things it takes to live a life. I often joke that simply getting ready in the morning is the group project that never ends.

I don’t want people to be “inspired” that I am doing the same things others are expected to do. I want them to realize the injustice in the fact that for me, basic inclusion still feels like a privilege. I want them to know that although I am tired from fighting so many battles, I am one of the lucky ones, afforded opportunities that too many of my disabled peers have been denied. I want them to know that for us, simply existing with bodies and minds that the world deems inconvenient is a rebellion. So yes, it’s amazing that I am here. But not for the reasons you think.

[1] Yang, K. and Tan, H.E. (2014). Disability statistics. Retrieved from Cornell University Institute on Employment and Disability.

                                                   (Image is a back shot of me rolling down the street in my cap and gown on the morning of my undergraduate graduation)

Tuesday, August 9, 2016

Thoughts on the Sagamihara Massacre and Ableism

I have delayed writing this post, not because it was not urgent, but because I have struggled to find the words to convey the horror of the Sagamihara massacre. Less than one month ago, a young man entered the Tsukui Yamayuri En care home for people with disabilities, murdered 19 people and injured 26 others. A cruel irony is that the attack occurred on July 26, a day meant to celebrate the Americans with Disabilities Act in the United States. I have so many things to say about this attack, but I will begin by saying this: Don’t you dare tell me ableism isn’t real. Ableism is real and it is deadly. This attack has been described as a “mercy killing” by some news outlets. Other news outlets failed to even mention it. Call it ruthless. Call it cold-blooded. Call it horrifying. Call it savage. But do not for a moment call it mercy. There is no mercy in slitting people’s throats as they sleep. There is no mercy in annihilating people for simply being who they are. The massacre in Sagamihara must be unequivocally recognized for what it was: a brutal hate crime.
The attitudes that motivated this attack are not new. While this is an extreme example of ableism, when I first learned of the massacre, it was yet another reminder of the ways that the world remains a stunningly hostile place for us disabled folks. I live in a world where Peter Singer, a philosopher who openly advocates for the right to kill a disabled baby after birth, is called not a monster, but one of the most celebrated scholars of our time. I live in a world that often forgets that more than 200,000 Holocaust victims were disabled people, targeted by a Nazi regime that deemed them “useless eaters.” The world I know has more conversations about giving disabled people the tools to die than the tools to live. Voices speak of giving them a “death with dignity,” a conversation we cannot have until every person has the chance at a “life with dignity”— one in which their care is not rationed, they can live where they want, and they do not have to choose between employment and necessary services.

Do you still think ableism isn’t real?

The Sagamihara killer was motivated by the very same ideas behind Adolf Hitler’s euthanasia program. In fact, not long before the massacre, he penned a letter to Japanese Parliament in which he stated that the “disabled can only create misery.” He envisioned a world where disabled people can be euthanized, and in the letter, promised to “wipe out” 470 disabled individuals. Plain and simple, he justified this gut-wrenching disregard for human life with the misguided notion that these particular lives have no value. Sound familiar? In the wake of this horrific tragedy, society is tempted to dismiss this act as a fluke, a shock, an atrocity that “came from nowhere.” Perhaps that feels easier than confronting the fact that it did come from somewhere… centuries of ableist attitudes. Growing up disabled means navigating those attitudes from the very beginning of life.

Coming of age with a disability means a mouthful of orthodontia and shopping for Converse sneakers. But it also means hearing strangers say that they’d “rather die than be in a wheelchair.” It means knowing that you, by virtue of existing, are three times more likely to be the victim of a violent crime. It means knowing that someone could hurt you and yet, escape the justice system if he or she just convinces the jury that taking care of you causes a lot of stress. It means not being surprised by what happened during the early hours of the morning in Sagamihara—just devastated and angry.

The killer was a former employee at the facility. His actions represent the ultimate betrayal of a caregiver’s responsibilities. I have depended on round-the-clock care since birth, and relying on others to literally help me survive has illustrated so many lessons for me. Most importantly, I’ve learned that caregiving relationships at their best are about interdependence and community. But the carnage in Japan is a sobering reminder of the hard truth that they can easily become about power, control, and deciding which bodies, which lives are convenient enough to deserve existence.

Being disabled takes courage. But it’s not the kind of courage with which the world is comfortable. It doesn’t come neatly packaged with “heartwarming” YouTube videos or “touching headlines.” It is quiet, but fierce. It grows and grows inside of you until one day, you join the rebellion that is loving yourself in places and spaces that don’t always love you back.

The Japanese authorities have decided to withhold the names of the victims. The reasons behind this decision are unclear to me, but I worry that in choosing namelessness, the authorities have chosen to reinforce the killer’s beliefs that these people do not matter. I wonder about their favorite songs and favorite foods. I wonder what they dreamed about before they were ripped from their slumber and ripped from a world that needed them. I find myself longing to know their names, to lock eyes with them and tell them they were worthy of life. I wonder, I wonder, and I long to recognize the humanity that their killer could not see.

I do not know their faces, yet I do. Because they look just like me.

Friday, April 22, 2016

Inspiration Porn: What's Not To "Like"? Well, A Lot....

Spring has sprung, and with it comes prom season. Unfortunately, prom season usually means “sunny, with a chance of inspiration porn.” Inspiration porn is patronizing media that portrays disabled people as heroic and inspiring simply for existing and doing things that non-disabled people are expected to do. If you don’t think you’ve encountered it, you probably have and not yet realized it. Inspiration porn is usually served with maudlin music or a corny quote. You may be wondering, “If it makes people feel good, then what’s the big deal?” The thing is, on the surface, this type of media may appear to be uplifting. At first glance, you may think it promotes inclusion. But if you dig a little deeper, there’s nothing feel good about it at all.

Let’s take for example I meme that my friend recently found on Facebook. The image shows a young able-bodied man dressed in a prom tuxedo, holding hands with a young woman seated in a power wheelchair and wearing a pink dress. In white letters, the text reads: “He asked her to prom, even in her condition! Like and share= respect.” Excuse me while I gag. What’s wrong with this meme? Where to begin…

It reflects low expectations for people with disabilities.
Going to prom or a school dance is often a tradition for high school students. If the fact that a disabled student attended the prom is still making waves on the Internet, then we as a society have very low expectations for what disabled people will do and accomplish. Memes like this one present participation and inclusion as an exception. They suggest that disabled people don’t usually belong in the community. Our participation should not be so unusual that it warrants media attention. We are not visitors to your community from some faraway planet or elusive creatures generally seen only in folklore. We are here in your schools, your workplaces, and your neighborhoods. Save your shock for “Local Girl Rides Unicorn to School Dance.” People in wheelchairs are quite boring in comparison.
It elevates the non-disabled to “hero status” for treating us like human beings.
The meme’s insistence that this young man deserves “respect” for asking this young woman to prom implies that he must be a “special kind of person” for even being with a disabled person. By this logic, disabled people are ordinarily undesirable and anyone who thinks otherwise must possess exceptional strength of character. If sharing romance, friendship, or even simple kindness with a disabled person is considered an indicator of superhuman benevolence, the message is that we are not deserving of basic human connection. It is absurd and insulting for the maker of this meme to put the boy on a pedestal for merely being with his prom date. The praise he receives for taking her as his date “in spite of her condition” very plainly suggests that a disability is normally an expected and even understandable reason to dismiss someone as unattractive and unworthy.
It creates an “us” and “them” mentality.
The text asks the cyber audience to show the boy respect for asking her to prom. By treating the disabled girl as “the other,” validated only by the non-disabled boy’s goodness, she is not presented as part of the group, but rather as an outsider welcomed with the permission of a heroic do-gooder. The meme tells an assumed able-bodied audience that they have been compassionate for making one of “them” feel like one of “us.”
It assumes that the invitation was born of pity rather than genuine attraction.
The fact that this is flying around social media with comments such as “WOW. AMAZING! There ARE good people in the world!” means that whoever made the meme hasn’t even considered that he may have asked the girl to the prom simply because he liked her. It says, “We know you wouldn’t really want to be with someone like THAT, so you must be feeling charitable!” It’s 2016, and yes, people with disabilities have friends and family members that spend time with them because they want to. Anyone who asked me to a prom as if I were a community service project would be swiftly turned down. For all we know, maybe she asked him to prom.
Who knows if the people in this picture even wanted this attention?
It’s more than likely that these two young people were having a typical night at the prom. It’s more than likely that this young man didn’t see himself as exceptional, and this couple may not even know they’ve been made into an Internet commodity. And I use the term commodity very deliberately because inspiration porn turns people into objects. They exist for the consumption of an able-bodied audience, not as human beings but as measuring sticks for others’ morality.
But… PORN? Isn’t that term a bit provocative?
Yes. I guess it is, but no other term quite captures the harm of such media. Much like porn in the traditional sense, inspiration porn puts its subjects (disabled people) on display and exploits them for the benefit of viewers, often without their consent.

Ultimately, inspiration porn like this meme is produced by a society that applauds disabled people for existing and worse, makes inclusion and participation a favor and not a right. I will be liked and loved for everything I am, not in spite of the parts that the world deems unpalatable. And if the prom is a metaphor for life, I don’t need an invitation. I’ve already begun to dance.

Image shows a young man in a tuxedo holding hands with a young woman in a pink dress. They are gazing at each other. The woman is seated in a pink power wheelchair. The text reads: HE ASKED HER TO PROM EVEN IN HER CONDITION! LIKE AND SHARE= RESPECT.