Wednesday, July 31, 2013

A Conversation I Wish I Didn't Have To Have: Abuse in the Disabled Community

I wish these words never had to be written. I wish this was not an issue, because I want to believe the world I live in would find such acts too heinous to be committed. But such things happen, and leaving these words unwritten will only allow them to continue. Governor Andrew Cuomo of New York recently established a new hotline dedicated to reporting abuse and maltreatment of people with disabilities. The hotline registered 5000 calls in 3 weeks. I hope you are disturbed, disgusted, and outraged about the prevalence of abuse in our community, but please don't say you are shocked. To be shocked would be to also be unaware of our society’s history of oppression towards the millions of people with disabilities across the globe. In fact, these kinds of acts are all too commonplace. According to a National Crime Victimization Survey by the Department of Justice, “Adjusting for the varied age distributions of persons with and without disabilities, the violent crime rate against persons with disabilities was 40 violent crimes per 1,000 persons age 12 or older, which was double the violent crime rate for persons with- out disabilities (20 per 1,000)” (Harrell and Rand, 2008).
This unsettling trend has to stop. We people with disabilities are more vulnerable to abuse and neglect for a number of reasons, including the fact that we face discrimination, are more likely to be isolated, and sometimes rely on others to provide basic needs such as dressing, bathing and eating. Admitting that we are members of a vulnerable population does not mean calling ourselves weaker, passive, or “less than”. It does not make me or you any less of an advocate. It simply means acknowledging the challenges ahead of our population so we can work together with our allies to best meet them. Abuse of people with disabilities is sometimes and often times insidious. It might be physical, it might be verbal, or it might be emotional. It doesn't always look like what you see on TV, or should I say don't see on TV because the media is quiet about these things, It is taking a device like a wheelchair away, it is making someone feel like they don't deserve to go to the bathroom. It is letting someone who needs help lie in bed for hours. It is all those similar incidents that go unreported. It can happen at the hands of a family member, a friend, a healthcare provider, or a personal care assistant, and no one should ever have to endure it.  Moreover, no cloak of mercy, no “lack of resources”, no overt ableist attitude should ever justify it. There are one hundred twenty six thousand people with disabilities in New York. If our hotline received five thousand calls in three weeks, can you imagine the staggering number that would result from a national one? This is not about people with disabilities, about parents, about support staff. This is about people, and knowing that if we fail a group of people, we fail all people. To people with disabilities, educate yourself, love yourself, and never stop believing that you deserve equal dignity and worth. To our allies, especially those in caregiving professions, you are essential to ending this terrible issue. Together, we can make that phone stop ringing, not because we will not make the call, but because we don’t need to. Speak up about why the indignities must end, or you will be choked by your silence.

Please read the following document about abuse among people with disabilities here. If you need to report abuse, click here for cases in New York State.

Harrell, E. & Rand, Micheal. (2008). "Crimes against people with disabilities." United States Department of Justice. Retrieved from

Thursday, July 25, 2013

The "New" Accessible Symbol: Do You Think I Get Excited That Easily?

I'm sure you've seen the hubbub about New York City's new symbol for international access. In case you haven't, in a nutshell, the fabled white stick figure sitting at perfect right angles while free-floating on a butt circle has a new, “progressive”, yes the press loves that word, descendant. Wait for it… a black stick figure free-floating on a butt circle, leaning slightly forward. I know the progressive spirit of our stick figure friend’s daring departure with his (her?) backrest will surely stimulate meaningful conversation about ableism in America and cause the ignorant to change their narrow thinking patterns, right?
 Well not to burst your bubble, or pop your tire, shall we say, but I am not convinced. Forward leaning stick figure man has not yet enchanted me. Proponents have said that the new design is more “humanized” and dispels the myth that disabled people are passive dependents. This method is a very good one to dispel, but I don't think the former symbol branded me as passive, because let's be honest, my lack of passivity is perhaps most obvious when I talk. Otherwise, I dare say I sit quite like stick figure 1.0, maybe with slightly greater a slouch. If Mr. stick figure had tape over his mouth, then we could make a stink about assumptions. The new design makes all wheelchair users look like they are speeding along, zippy, and of course, athletic. Seeing as most people will give the sign five seconds of analysis, I think most members of the general public may not even notice the difference, or if they do, it will perpetuate the media love affair with the sporty crip, because people in wheelchairs sitting rigidly while doing homework and eating five hundred pretzels like every other college student in America are so opposite of interesting. Cute, maybe, but nothing more. While the intentions are great, most people not already invested in the disability rights movement are not going to unlearn their prejudices, or even think about them, because that guy on the parking sign decided to stretch a little. In fact, if in order to be an “active” disabled person, you must push your own chair, then I have failed miserably. If we're going to get picky, some people are not able to lean forward, and still they are active citizens. What if, analyzers of the world, Mr. stick had a spinal fusion? To those of you who are about to call the mayor to make room for this possibility, that was a joke. What I'm trying to get at is no, the old symbol isn't perfect, but in a time where the budget is tight, the issues are many, and people’s needs are real, is redesigning a stick figure really the best way to spend our money? If we want to do something for people with disabilities, we need to spend our time and energy, and yes, our government money, on things that really matter. If New York City, or any other place where the matter, wants to make life better for us, elected officials and ordinary people should stop smiling about stick figure 2.0 for a minute and realize that America's largest minority has bigger fish to fry. If this much excitement and praise were generated in the media about accessible housing, affordable personal care services, better medical coverage, I would be on cloud nine. The disabled employment rate is less than forty percent. Discrimination in schools, housing, and workplaces is rampant. If our cities across the country really wanted to wage war on ableism, the money spent “improving” the access sign would be used to address these injustices. The truth is that while people are spending money to make the stick figure look more humanized, real people with disabilities are being dehumanized, because the money for services they need can't seem to be found by those in power. People who are ignorant about disabilities are not going to say “wow! The stereotypes I relied on about people with disabilities were so wrong!” by looking at a new parking sign. That has to happen through education, and public pressure to fund projects that give people the disabilities a more meaningful place in society. If the press dedicated as much attention to our needs as they did to our stick figure, we would be living in a much more accommodating world. The average Joe who even notices the change in symbol will probably have the following epiphany. “I knew that one looked different! Somebody slit the tire!” So friends, not to dampen the excitement, but stick figure 1.0 and I are still tight. I can’t abandon a guy that graced the side of my short bus for years just because he’s a little rigid, can I? On an entirely separate note, both symbols insinuate that all disabled people are in wheelchairs, which is far from true. If we really want to be inclusive, let’s come up with something that encompasses all disabilities. But for now, with bigger disability rights issues on the horizon, I’d like to start a conversation about something else. And to the accessible taxi bearing the new “progressive image”, perhaps we should work on your ability to be located before we worry about what you look like…

 See the news article here

Thursday, July 11, 2013

Call Them Worthy: Ableism, Attitudes, and the Danger of Misplaced "Mercy"

A memorial is finally being constructed to the disabled children, women, men, brothers, sisters, friends murdered in the Holocaust. You have all heard of the atrocities committed by the Nazis, but did you know among those victims were three hundred thousand people with disabilities? The Nazi Party organized the T-4 Euthanasia program as a precursor to the notorious concentration camps. Though no one speaks for them often, people like me were the first to die. The Nazi philosophy deemed people with disabilities “unfit for life” and sent them to meet a cruel death under the cloak of mercy. I am delighted that something is being done to recognize these victims, but so very sad that it took so long. We might think the attitudes that led to T-4 are gone with the Nazi regime, but we must remain vigilant because the seeds of such ideas remain in our society. They are a threat to human diversity, and a threat to people with and without disabilities, because all people should live free of fear that they will one day be targeted for being who they are. Sadly, our media condones an attitude that violence against disabled people is due to the burdens they incur, and make it seem like the disabled person’s existence offers nothing but enormous cost. These attitudes cause innocent victims of violence to be robbed of the justice they deserve, justice that would be sought for non-disabled people by default.
 Just today, a sixteen-year-old boy was arrested for the murder of his half brother Terry Smith, who was autistic. When I see such stories, I tear up for the life cut short and also for the onslaught of commentary I know will follow about how difficult such children are. Next in my mind is Alex Spourdalakis, an autistic man murdered in March by his mother and godmother because they were frustrated with him. The media follow-up on the case has focused on the difficulty of assisting an autistic person, how tired his mother was, but very little has been spoken about the fact that Alex was the victim of a heinous, premeditated act of violence because he required more care than some other people do. Alex’s mother was offered services from the Department of Family Services this past January, and she refused them. Alex was stabbed multiple times by those entrusted to care for him. Finally, I think of Julie Cirella, an eight-year-old girl with cerebral palsy murdered by her mother who fed her a candy to which she had a known food allergy. Her mother’s note from a suicide attempt expressed that killing Julie gave her a better life because she was “free” from “suffering”.
The image of the sweet- faced girl chilled me to the bone, as she had the same disability with which I live my life. Yes, I face challenges. But the idea that a life like mine is only suffering, and allowing that idea to persist causes destructive events like Julie’s death in our community. I am not oblivious or insensitive to the fact that getting supportive services for people with disabilities is exhausting at times, and wrought with red tape, incompetence, and bumbling agencies. But we must come together to fight for better services in a manner that does not blame the people who need those services. We must realize that better supports are an important cause, but we cannot champion the cause by blaming the oppressed for the oppression. The lack of services in our community is a crime, but so are the murders of Alex, Terry, and Julie. Murder is murder, and violence against a person with a disability should be abhorred as it would be in the case of any other person. Yes, parents need support. Yes, they deserve more support than they are receiving. But we cannot live in a world where killing a disabled person becomes a choice. When that becomes a choice, condoned by the lack of action by others, we are a step closer to once again declaring some and not others “unfit for life”. That scares me, and it should scare you. As someone who depends on others for basic daily tasks, I know how it feels to have your life intertwined with another trusted to help you. I regard these relationships as sacred when based on dignity, respect, and compassion. To violate those principles is to threaten everything we should hold dear as a people. When I see people abusing their roles in the very kind of relationship that keeps me afloat, my heart breaks. I am fortunate to have a loving family and a large network of advocates, but knowing that I have these gifts is not enough. Every person, regardless of disability, gender, or orientation deserves the same things.
As the T4 memorial is built, I challenge all of you to strengthen your communities by recognizing the inherent value of every person. By finding a place for every person. And by taking an unqualified stance against those who decide for others what kind of life is “good enough”. Alex, Terry, and Julie, you were worthy of life. So were the three hundred thousand people taken in the Holocaust. I am sorry that your lives were cut short. I am sorry for the ableism that snuffed your candles. I am sorry that those entrusted to help you betrayed you. I am sorry for all the attitudes that made anyone think hurting you was a good choice. I will do everything in my power to make sure that no one else has to suffer the same fate. When my life on earth is over, I pray that I will meet you in Heaven. When that day comes, I will hold you close, and speak of all the people who remember your names.

Tuesday, July 9, 2013

On My Way To Opening Cripcakes Bakery....

I am very rarely seen in the kitchen. That is, unless I absently turned in the wrong direction looking for my bedroom. Then, maybe. Otherwise, you could say cooking is not my strong point. The closest I’ve come to braving the culinary world is a late night microwave meal in my dorm, and based on the half cooked bits of processed cheese on my pizza bagels, the results can only be described as tragic. However, let it be known that I ate them anyway, to avoid the indignity of informing one of my personal assistants that the three easy steps did not go as smoothly as it looked like they would on the box. So, you could say, after failing to make a snack mastered by most twelve year olds after a long day of middle school, I hung up my chef’s hat for a while. But today, on a hot summer day, something amazing happened. Weary of filling my head with obscure facts about household pets, and certain that there was truly nothing new on my Facebook newsfeed, I decided to bake. As my mother checks ingredients off her list, I embark on an epic quest to find the vanilla extract, feeling very empowered, independent, motivated, and all those other “disabled person doing something besides sitting” buzzwords. My glory is quickly crushed by the fact that among the many items on the shelf, the vanilla extract is on one of the shelves I can’t reach. Feeling dejected, I pace by the shelf until someone notices me, and places the bottle in my lap. After all the ingredients have been gathered and I’ve blocked a few shopping carts with my wheelchair, shopping, phase one is complete.
When I return home and begin putting the ingredients in the food processor for the raspberry tart, I am feeling high on life. My future children, I think, will eat something other than peanut butter and jelly. PB & J and raspberry tart isn’t the most varied menu in the world, but hey, it’s a start right? All is going smoothly. A little too smoothly. If I am seen by The Powers That Be preparing anything too successfully, surely my benefits will be reduced! Just as I am formulating my speech about how I did in fact fail that ADL* test, and failed it proudly, I may add, I am reminded why I crossed pastry chef off of my list of dream careers, and why my benefit check will be staying at just the same rate. In a spirited attempt to mix the batter, I hit the wrong button and disconnect the mixers from the rest of the machine. Oops! After reminding myself that I may need a little more work before throwing a soiree for all my friends, it’s on to the rolling pin! As soon as I begin rolling the dough, I can’t resist thinking that this is probably the closest thing to occupational therapy I have attempted since the last time I tried to make a friendship bracelet. Needless to say, one would assume, based on the bracelet, that the friendship represented was tumultuous…unraveling, you might say. As my rolling pin work out continues, I hope silently that the cobwebs residing in my crochety shoulder joint have not found their way into the dough. When the dough circle is determined to be the appropriate size, my mother dumps it from between the wax paper into the waiting tart pan. During the transfer, a few pieces of dough jump ship, and the edges of the part have a few holes. We do our best to patch them up, but I am secretly content with my slightly wonky crust. I am, after all, an inclusive baker.
While the tart bakes, I begin my second project, banana bread. Using a box of Pillsbury’s self proclaimed “Quick Bread”, I am once again full of hope. However, despite a recent dose of Botox in both arms, my attempt to open the bag fails, and I remember why I carry around a pair of green children’s scissors. In a cloud of banana scented fun, the mix is in the bowl, naturally with some of the powder finding its way onto my seatbelt and into the crevices of my wheelchair, probably to go unnoticed until five minutes before my next presentation at school. Cracking eggs proves harder than I remember from my days as a six year old pancake ninja. After hitting the edge of the measuring cup gingerly, I determine that cracking eggs is in fact, a startle trigger. I consider calling a friend to wave a mini American flag and sing the “Impossible Dream” for encouragement, but then decide I should let my mother crack the eggs, as generally speaking, baked goods taste better without egg shells. Soon, all is mixed together and ready to go. In a few days, I’m expecting an AOL reporter looking for a feel good story to pen “Disabled Girl Cooks Something Other Than Easy Mac”. But friends, I can’t get ahead of myself. Call off the press until I see what it all tastes like. If I don’t get salmonella from the droplet of batter I ate, you shall all be invited to my Palsied Chef” party very soon….