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Category Archives: Disability Rights

A Note About the “Weird Kids”

The shooting in Newtown affected me deeply, as it did many people. I think most of us are desensitized to the news by now, but we don’t have a frame of reference for the mass murder of children in our country, and it hit us all in a spot in our hearts for which we haven’t built up any armor. Regarding most parts of this situation, I don’t have anything to say that hasn’t already been said articulately by other people. But as more and more details come out about the shooter, Adam Lanza, I do have something to say about his inevitable portrayal in the media as a “weird kid” who was “quiet, shy….socially awkward.” The New York Times even irresponsibly repeated his classmates’ speculation that he had Autism or another developmental disorder.

When something tragic happens, it is natural to search for reasons or answers. But it’s so, so dangerous for the media to start correlating “weirdness” or social awkwardness with a crime of this magnitude. Among the weird kids, and among humanity in general, this guy is an outlier. I know reporters are trying to do their jobs, but there are more responsible ways to discuss mental health issues than to imply that every quiet, awkward, or different person we come across might be capable of something like this. People listen to media reports and simplify. That’s why stereotypes are so easy to create, and why racist or discriminatory backlash occurs whenever a minority group is in the news for hurting other people.

So, just so we’re clear, there is nothing wrong with being a weird kid. If the shooter was in fact Autistic, it says nothing about Autism in general. The only group of people he represents is the one that has easier access to guns than they do to community support.

And for the record, every single weird kid I’ve ever known has grown up to do amazing things and change the world in profoundly positive ways. I’m so proud of them, and join them – and everybody else – in grieving this loss.


Pop Culture Rant: On “Glee” and Disabilities

I have a confession to make, which probably comes as no surprise to people who follow this blog: I watch the television show “Glee.” It’s this weird paradox in which every week, every time I finish the show, I completely regret feeling uncomfortable for an hour of my life, but I can’t stop. I keep watching it every week! And I always end my viewing session feeling vicariously awkward on behalf of the poor souls who have to break into “Journey” songs every two minutes, and then I quickly erase my browser activity so nobody knows what I just did. But this isn’t about trying to absolve my guilt over watching a cheesy television show. This has to do with the representation of a minor character in the show who has Down Syndrome.

For those who are unfamiliar, this is Becky, played by the immensely talented Lauren Potter:

Now, you have to understand, this is a case in which I’m honestly questioning whether I’m being too sensitive. I would never accuse myself of being too sensitive over the “R” word or over the abundance of judgmental language we use to describe people with developmental disabilities. But here’s the thing, dear readers: I spent the better part of my college life being trained to notice patterns in popular culture that marginalize other people: races, sexes, or sexual orientation. And when I look at Becky and her role as the sidekick to “Glee’s” resident evil, Jane Lynch’s cheerleading coach Sue Sylvestor, all I can think of is this:

The buffoonish partner to the archetypical villain. The one who’s there for comic relief, who says the funny lines, who makes you feel that unlike the villain, they’re not some evil mastermind; they’re just a little lost. And comical, of course, always.

Now, I’m a rabid fan of Jane Lynch, and her recent commencement speech at my alma mater brought me to tears of nostalgia. Seriously, I love this woman. I am also aware of Jane Lynch and Lauren Potter’s incredible voice in the disability awareness campaign. And I know that taking offense to “Glee” is a trivial crime, so be aware of all of this as I continue.

I just do not like the way the character Becky is portrayed. Plain and simple. I think she’s cartoonish, two-dimensional, and there for an easy laugh. In a recent episode I watched as her character sat in a hotel room with a few of the primary characters, as they felt disappointment over not being somewhere better, as she demanded beer and condoms, and the implication was, “laugh at this person for demanding condoms so she can presumably sleep with one of the main characters, who will, of course, reject her.” And I’m sorry, but that just isn’t funny. I’m sorry, but using a disabled person’s sexuality for a cheap laugh will never be okay with me. I’m sorry, but the intent was wrong: it wasn’t to point out the disabled person’s real, human feelings; it was to make an awkward, uncomfortable situation even more laughably uncomfortable.

If you want to talk about the capacity to which an intellectually disabled person feels fully-functional adult emotions, that’s one thing. If you want to talk about the moral implications of giving alcohol or condoms to an intellectually disabled person, that warrants an even longer conversation. But to make light of it and then move on is inexcusable.

And I know it’s not this show’s intent to write off a disabled person for comedic relief; in fact, I think that in their bizarre way, “Glee” is trying to draw a “this person is just like me” parallel. But it’s going about it all wrong, and I think at the end of the day, all they’re doing is solidifying the perception that society already has about teens or adults with disabilities. And I’m not sure if this is too much of a tangent, but full disclosure: I don’t think they’re doing gay people any good, either, when they lump gay storylines into the same storyline as a student sleeping with a teacher.

It used to be my goal to make movies and television shows (this was a long time ago) for one simple reason: to create characters that are different from the ones we see every day. At the time, for me, this was especially true of women: I yearned to see female characters onscreen that didn’t portray the archetypical romantic or weak stereotype.

But now? Now that I’m focused on disabilities? Let’s put it this way: I was concerned for women, but I’m pissed off on behalf of disabled people. If our disabled people aren’t buffoons, or if they aren’t a way of proving the main character’s “humanity,” or if they aren’t Oscar-bait, then they do not exist.

But guess what? They exist. They are our Austistic brothers, our aunts with Down Syndrome, or, in my case, our beautiful and capable brain-damaged sisters. And unlike “Glee,” high school wasn’t a laughable time for my sister. My parents had to move out of state just to find a special education program that wouldn’t amount to making my sister wait tables in the cafeteria for her able-bodied and able-minded peers. Before my sister switched schools, she was kept in a room with the behaviorally challenged kids (which she wasn’t) where they hit her (which made her wonder what she had done wrong).

This is the story that remains untold. This is high school for millions of disabled children around the world. And to minimize that by telling the story of one high school where the disabled girl is the laughable cartoon sidekick to the most evil woman in the school? That’s not okay. There simply aren’t enough stories out there to counterbalance this one. There simply isn’t a reason to believe that the stereotype portrayed in “Glee” isn’t true.

Study: Many Adults With Disabilities Do Nothing All Day

Yesterday I discovered an unsettling but not unsurprising study about adults with disabilities. A survey of about 800 siblings of adults with disabilities reveals that about 13% of disabled adults have nothing to do with their time–no job, no educational activity, and no form of recreation.

Now, numbers can be misleading and our brains are trained to interpret data in a certain way. So if your first reaction to this information was to say, “13%? That’s not so bad!” then I don’t fault you. To be honest, that was my first impulse too.

However, 13% of 800 is 104 people. That’s a significant number. If the percentage holds true across the board (and it probably doesn’t–given the demographic of the siblings surveyed, the percentage is most likely a lot higher), then here’s the breakdown:

  • There are 6.2 to 7.5 million people with cognitive disabilities in the United States, so:
  • There are 800,600 to 975,000 disabled adults just sitting around all day, unenriched, unfulfilled, and most likely quite depressed.

Again, I’d wager to guess that the numbers are even more dire than these findings reveal. The siblings who were surveyed were wealthier and more educated than the general population as a whole, meaning they’re more likely to have the means to find outlets for their disabled loved ones.

But even having the means won’t do a damn thing if the outlets don’t exist in the first place. My parents are pitch-perfect examples of people who provide their disabled daughter with a happy, fulfilling life–but even they worry about what Martha is going to do with her time when she graduates from the Transition House (part of her local special education program–instead of going to school all day, she goes to a house for disabled students up to the age of 21 that teaches basic life skills). Although Martha is happy and social and would be a wonderful asset to any organization, her cognitive abilities are such that even Goodwill can’t offer her a job. Finding recreational, social, and educational opportunities for disabled adults is a full-time job (usually falling to parents or other family members) that takes tenacity and creativity.

I see this as a fundamental human rights issue. The Declaration of Independence’s “right to the pursuit of happiness” is one of the most influential phrases in U.S. history. Anyone who has ever felt isolated or bored can tell you that an absence of meaning and purpose is one of the most horrible, defeating, and depressing feelings in the world. But our society is simply not set up in a way that allows many disabled adults to pursue happiness.

There is a disabled man who sits in front of my apartment complex’s mailboxes all day, every day. He is always there unless it’s too hot or too cold, at which point I imagine he sits in his apartment. You’d be amazed at the degree to which he lights up every time I’m out walking my dog; I always say hi to him and ask if he wants to pet the dog. I’ve never seen anyone else in my apartment complex speak to him.

Widespread change is going to take a lot of effort; in the meantime, if you pass a person like that man every day, just have a conversation with him. It could be the most stimulating thing he does all day.

A Healthy Family

The Huffington Post’s article about abuse towards disabled adults hit me hard in the stomach. Before citing some absolutely appalling stories and details, the article reports that disabled adults are at a much higher risk of being physically and sexually abused than non-disabled adults.

This hurts. It hurts every single one of us. Our health as a family, a society, and a planet is directly tied  to the way we treat our vulnerable or misunderstood community members. If a person is fragile physically, mentally or socially, the healthiest possible human grouping will take the best possible care of them. The weakest possible human grouping will take advantage of them. If someone mistreats a disabled person, it’s not just a problem; it’s a symptom of societal disease.

I truly believe that speaking to a person with a social or cognitive disability, then becoming their friend, then learning to love them as a contributing member of society will impact so much more than the rights of the disabled. Once your brain is open to compassionate understanding, it will affect the way you treat everyone else in your network, disabled or not. A person with a disability is one of the best possible candidates for instilling this sense of compassion.

The tenet that increased interaction with cognitively disabled people will lead to greater societal compassion is one of the more idealistic or “visionary” philosophies behind The Great Exchange (as opposed to “practical”), but it runs deep. It will be a long time before something like that can be measured. But there it is, tucked away, driving the more practical in’s and out’s. I guess I just take this one on faith.

A Labor of Love

I spent awhile thinking about how this should begin. Should I just start spilling out all of the ideas that are scattered like constellations throughout my Google Docs? Should I list my heros in the Social Entrepreneurship Hall of Fame (Mary Gordon, founder of Roots of Empathy, and Muhammad Yunus, in case you’re wondering) and fade into the ways in which I think my ideas could ultimately multiply and take off like theirs did? Should I just hit you with the mission statement of my nascent little startup, The Great Exchange? Let’s be honest; I’ve thought about that mission statement a lot, and I’d love to share it.

But I probably shouldn’t do any of those things. I think all organizations, causes, art projects and entrepreneurial endeavors begin with a narrative that’s a lot simpler than that. So here’s mine:

Hi. I’m Meg, and that’s my little sister Martha wearing the blue overalls. I’m a little older now, and so is she. Here are some things you can tell from this photograph: in many respects, we display the sisterly dynamic you would expect to encounter. We adore each other, and I’m fiercely protective of her. In fact, “protective” is an understatement; at many points throughout my life, Martha has shown me glimpses of what it must be like to have children, an encounter with thick and nearly tangible love combined with a selfless but frantic sense of anxiety. It’s a truly profound feeling–not happy or sad, but just big.

Here are some things the picture doesn’t reveal: a few months after this photograph, Martha will be in a hospital bed, head shaved, scar crawling across her scalp like one of those giant centipedes in the Amazon Rain Forest. For the next 17 years after that, she will encounter a system of special education programs and classes that vary wildly in quality. And today, she’ll be 20, and my Mom, Dad, older brother and I will be initiating a series of conversations about how to plan for her future. Martha grew up brain-damaged and cognitively disabled, and because of this, she will never be alone.

And because of this–well, this combined with a fiery passion for entrepreneurship, an aversion to having a boss, and a creative drive that is best funneled into building large projects and systems–I’m starting a nonprofit called The Great Exchange. So here, then, what I’ve been waiting for, the mission statement:

The Great Exchange promotes self-advocacy among intellectually disabled adults by setting up pathways for them to network with nonprofits around Austin. In exchange for team-based volunteer work at each nonprofit, the host site will provide a list of ways they plan on fostering inclusion in their workplace or community. 

I just felt a little thrill, after pasting that from my web site. So what makes me qualified to run a nonprofit when I’m only 26 but, moreover, when it seems that everyone and their brother is taking advantage of the troubled economy by starting up well-intentioned but barely functioning organizations and duplicating one another’s efforts in the sloppiest of fashions? Well, hopefully this blog will get to that someday, but I think my most important credential is this one:

I absolutely adore making mistakes.

I’m hoping to use this blog as a means of documenting these mistakes, the lessons I learn, the triumphs the Great Exchange experiences, and to make my thought process as transparent as possible as I carefully determine how to move forward. I hope anyone following this journey can use the ensuing ups and downs as a resource as they build their own projects and write their own love stories.

So without further delay, my love story.