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Friday, May 30, 2014

Lessons I Learned At The Empire State Games: Reflecting on Seventeen Amazing Competitions

Today I participated in my seventeenth Empire State Games for the Physically Challenged, and because I am now twenty- one years old, it was my last competition as an athlete. For those of you who do not know, this event, affectionately called the ESGs, is a series of athletic competitions for people of all levels with all types of physical disabilities. They include wheelchair races, walker races, and wheelchair basketball games. What makes it unique is that one need not be a trained or competitive adaptive athlete to take part; for many of us, it’s just about fun. But the important part is we are given the chance to compete, with people of similar physical abilities, a rarity for many of us, especially those who attend a mainstream school. The Games are about us, people with disabilities, who have both the right to win and the right to lose.
While the outcomes of the competitions do not matter at all, there is something beautiful in having the chance to lose in addition to the chance to win. It means we have been included in an authentic competition, rather than relegated to a contest where we either cannot play due to our disabilities or are given the stock patronizing speech that "everyone is a winner". Too often, when it comes to recreational activities for people with disabilities, this speech is given as if we need to be protected from the ordinary possibility of losing a race. Winning and losing is part of life, as a person with a disability can clearly understand, based on the societal obstacles presented to us on a daily basis. It helps us learn, to celebrate when we win, and, if we are taught correctly, to celebrate even when others win. So no, it doesn't matter if you win or you lose, but it sure feels good to have the chance to do either. When both options exist, it means you truly competed.
However, in the years that have passed since I ran my first race at the age of five, I have learned a lot of things far beyond the context of the competition. The races and their outcomes are but a small, small part of the sweet lessons I learned here. To look around, is to see people of so many different varieties, coming together, united by the disability experience. Here, we have shed the stereotype that being a member of this group must mean the end of the world. Be here for a minute, and it is extraordinarily clear that it is not the end of the world, but instead, an opportunity to experience a part of it that so many other people will never know or appreciate.
It is here that I have some of my earliest memories of being at peace with my body. I relished in the strange joy of seeing other people whose long, spindly fingers were always tensed, as if all the energy of the universe were constantly pulsing through them. Other people whose thumbs were tucked snugly between their middle and ring fingers. Other people whose legs shot out into spastic excitement when seeing a friend, or whose inner emotions were a secret only for a few moments, before being given away by an unruly arm or foot. I remember as a small child being so excited to see that other people "like me" were out there, and to be in a place where our quirks were something ordinary, or even something of which we could be proud. I still get that feeling sixteen years later. I am "OK” this way. The thousands of TV shows, magazines, plays, books, and posters that are yet to feature a person that looks like me cannot steal the value of who and what I am. My story is visible here, and the world, so often allowed to make it invisible, must look. The thing is, if they really look, they will not at all see what they have been taught to expect. They will not see people who want medals for existing, or people who can only see grief in that which they have been dealt. They will see people, whose circumstances are perhaps extraordinary to some, doing ordinary things. Being happy. Being proud. Being who they are, both in spite of, and because of, a disabled body marked by “otherness” in the eyes of society. That is what I learned in seventeen years of taking part, and I hope other people will continue to learn the same. As I crossed the finish line for the last time, my five-year-old self and every self along the way was alive in me again. When I looked out at the crowd today and saw hundreds of younger children, who hobbled with my familiar gait in tiny walkers and butterfly braces, my heart was warm. I was inspired. But not for the usual reasons. Not because I wanted to call them “inspirational” for doing what other kids have the chance to do by default. Not because a kid on a walker running a race is brave, or because I found the nearby clown accosting us with stickers to be very funny. But because I was smiling back at my younger self, telling them, and telling the child I once was, that they were going to be okay. That it was okay. That living disabled would never be easy, but that it could be good. That the vessels that carry their spirits are not broken, and that they should always be proud.

Next year, in “my retirement” from the Games, I hope to volunteer with the rest of my “geriatric” friends who have aged out, and happily give the magic to other kids, while we cackle about the steady decline of our aching joints and our hamstrings that probably resemble stretched out rubber bands, a dark comedy show all our own. But more than that I look forward to seeing the next generation find out who they are, laugh at the absurdities of the crowded track, scan the price tent for ironies like a Twister Board, and make a skit character of the seemingly legless stuffed bear with a cone on its head at the mini golf course. I look forward to seeing them grow into smart, funny, witty, and proud people, unafraid to be sculpted by life, in spite of and because of their disabilities.
To find out more about the Empire State Games for the Physically Challenged (Victory Challenge), see the following link:
www.nassaucountypcgames.com

Below is an essay I wrote in 11th grade, inspired by watching my shadow along the track. It still speaks to me today.
"Even my shadow is different. The small outline of my figure perches on the silhouette of my six-wheeled ride, moving in a slow, crooked, asymmetrical dance. Moving through life this way is indescribably natural. With one slightly twisted hand resting on a well-loved joystick, I navigate my vessel from my own vantage point, somewhere below the world’s eyes and above its sneakers. This is my perspective, a window through which the colors of a vibrant culture glimmer. At times it is difficult for others to see the light that shines through my window everyday, difficult for them to understand what satisfaction could lie in an existence that is on the surface marked by the things society calls abnormal. I see these things as just ordinary, because for me, quite simply, that is what they are.
I am so much more than my disability. I am deep in my thoughts and rich in my desires, so many of which are shared, so many of which draw me into the essence of what it is to be human. But the elements of me that venture past “normal” matter and they always will. I love the soft buzz and click of my twenty-four volt battery; on a busy street where the sounds of creation converge, I know that I fit, that the rhythm inside of me is strong and rare and worthy. 

It is when I watch my shadow, untamed and free along the sunlit earth that I am most aware of beauty. With a variety that places us in the company of butterflies, we are brilliant and glorious and essential to each other. It is the light shared between us that allows our shadows to dance."

Friday, May 23, 2014

Help Is Not a Dirty Word: Constructing Independence As Something Other Than "Never Depending on Anyone"

Society tells us from the time we are young that the best disabled people do not depend on anyone. "Being raised to not depend on anyone" is a societal hallmark of a disabled person that has “overcome” according to the standards of success. We are declared "successful" in the eyes of society when we don't need help anymore or we need the least help possible. While well intentioned, this logic is damaging and twisted. We need to change the way we look at disabilities and the way we treat the idea of needing help. While it is certainly a good thing to do as much as one possibly can without assistance, we have not accomplished anything as a society seeking to empower others by shaming those who do in fact need some help. The fact is, with or without a disability, everyone needs help sometimes and everyone, yes, all of us, depend on someone for something. There is no shame in that because it is part of the human experience to support each other. It is true that I still need a lot of help physically, from transferring out of my wheelchair to something as simple as using the bathroom. But to say I have tried less or succeeded less because I have not managed to stop needing help with these tasks does not mean I have failed in my efforts to be the best person I can be.
Why is it that we have created an image of the powerful and victorious disabled person as one who has never needed or no longer needs personal care assistance? The fact is that no amount of striving, cheery smiles, or superior moral character will change the fact that some of us will always need a personal care assistant, a nurse, or maybe just an extra set of hands to be there in order for us to survive. It's time to create a narrative where empowerment and assistance can peacefully coexist rather than one meaning the absence of the other. Instead of systems that push for the least number of care hours, the fewest pieces of equipment, and the fewest number of people with a home health aide as a marker of success, we need to start building a world where those who can live without physical assistance do so, and those who cannot, instead of being held to an unrealistic standard that does not reflect their reality, are taught that needing help is nothing shameful.
Those who do need assistance, instead of being told that they would be more successful if they were to join a group of people who do not need help, should be taught to manage their care and services in a way that empowers them and gives them the ability to make their own choices. There is also the reality that a black and white view of independence as “doing everything on your own” may lead to a quality of life that is more exhausting and more dangerous than it needs to be. Society gives us a sticker if we do everything on our own. In the media, "the good cripple" never has a personal assistant in sight, and gets dressed, bathed, and ready for school all on his own, even if doing so takes away every iota of his energy. But is the sticker really meaningful if this so-called “independence” means taking six hours to get dressed, being drenched in sweat soon after you wake up, and risking a fall every morning because society says doing it on your own is the only way to earn the right to say you tried your best?
The fact is, it is important to do as much as you can on your own, but not at the expense of your health and safety. We cannot put those who "do it all on their own” on a pedestal and shame those who can't, based on the false idea that all people can be measured using the same test. Independence does not look the same for everyone, nor should it. We should be teaching those who grow up disabled and those who become disabled later in life to set goals according to their individual situations, because life is not as simple as the need for assistance appearing and disappearing based on how hard we try.
Those who continue to need significant amounts of physical care do not need it because of a lack of effort or the triumph of laziness. They need it because it is appropriate for their situation. While it is nobody's dream to depend on someone else for butt-wiping duty, accepting the help does not mean the end of agency and power. In fact, if such help allows one to be safer, more efficient, and healthier, accepting it does not mean surrendering your power. It means claiming it. And to those who think not needing help with anything is the mark of being “raised right” with a disability, I encourage you to consider the potential this idea has to demean others. Just because I need help taking a shower or getting out of my bed, I assure you that my mother did not raise me with any less care than the other mothers around me. I was taught that it is okay to ask for help as long as you have tried your best. I was taught that the inability to tie my shoe does not stain my character or indicate that I have “given up” sooner than the other people with disabilities. I have chosen to proceed in life pouring my energy into those things that are realistic to do "on my own” and to be at peace with those tasks that require the help of another person. I refuse to be classified as a failure of courage or character for recognizing my needs. I refuse to risk breaking my arm getting out of bed because trying to do so "without help" and falling is seen as a superior display of empowerment compared to helping others learn how to help me.
We’ve all seen the popular cartoon featuring a monkey, a penguin, an elephant, a fish, and a dog, all of whom are cheerily informed that “for a fair selection, everybody has to take the same exam: please climb that tree.” This cartoon is most frequently used to highlight the absurdities of making sweeping generalizations about what qualifies as ability in our education system. But the same cartoon very well explains the unfair standard around which society constructs its idea of what it means to be "independent". To expect the same from the monkey and the goldfish would be preposterous, because climbing a tree is a much more difficult task for a goldfish.  Certainly we cannot declare the fish to be a slacker or an individual of lower moral character than the monkey because climbing the tree on his own without proper accommodation would be impossible. We would never think of insinuating that the fish's mother had not raised him to try hard enough because he cannot effortlessly scale the tree on his own.
Now imagine that climbing that tree is something more every day, like using the bathroom or putting on a T-shirt. Every person with a disability cannot be held to the same expectations in order to be declared worthy of praise. If a child who can put on his own T-shirt is treated as more successful, and by insinuation, more virtuous and driven than one who needs help, but directs his assistant with clarity and skill, than we have treated these two children no better than the monkey and the goldfish. Asking for help those not mean the death of independence. You can still be an independent person while accepting the assistance of others. Some of my closest friends need help eating, bathing, dressing, and transferring. I myself need help with many of these things. But I still regard us as independent people because we take control of our lives in our own way.
 In fact one could argue, even more so that others… Because we have to teach people exactly how to help us and have to think deeply about what is involved in tiny actions that most take for granted. We are forced to be creative and innovative when the world we live in seems surprised at our presence. We are forced to develop a trust that most people will never experience, to know ourselves right down to how much toothpaste we want on our toothbrushes, and to realize that we all need each other much sooner than most will be blessed with this realization. It is commonly assumed that we need one another's help at the beginning of life and at the end. But the truth is, we need it in the middle too, regardless of if or not we have a disability. Some of us just need it more visibly than others.

Help is not a dirty word. It does not mean you have given up, failed, or proven to be anything less than amazing. It means that you are brave enough to tell others how silly it is to ask a fish to climb a tree.
[Image shows a line of animals, a monkey, a penguin, an elephant, a fish and a dog. A thin man with a suit and a mustache sits at a desk, and a speech bubble reads: FOR A FAIR SELECTION, EVERYBODY HAS TO TAKE THE SAME EXAM-PLEASE CLIMB THAT TREE. The animals are in line on the grass in front of a large tree. Caption reads: OUR EDUCATION SYSTEM].

Saturday, May 3, 2014

The American Dream Also Has Wheels: Reforming Medicaid to Give People with Disabilities Equal Opportunity

From the time we are young, we are told that if we work hard, we can achieve anything in America. That we get what we worked for and the dream is ours. If you grow up disabled in America, the system has huge flaws that make you think otherwise. Although we were long ago declared equal citizens, the current Medicaid policy on which so many people with disabilities rely contradicts the very idea that opportunity belongs to everyone, with or without a disability. Currently, Medicaid is essential to millions of people with disabilities, specifically to qualify for healthcare coverage including personal care assistance that would otherwise present a prohibitive financial burden. Personal care services at their least expensive, cost about $20-$30,000 annually, which for many people represents a significant chunk of an entire annual salary. Thus, many of us need the money from Medicaid to fund the care we need to survive and survive independently.

However, here's the catch. In order to remain eligible for Medicaid which includes the home care services, a person with a disability can have no more than $2000 in his or her name at one time which effectively creates a system that makes disability and poverty inextricable. Essentially, the system as it stands forces people with disabilities who need these programs to choose between support services that they can't live without and the ability to save money that will keep them out of poverty and give them a chance to achieve financial independence. These rules simply do not make sense for the situation. All around us, there are media campaigns encouraging people with disabilities to work. There is national disability employment month. There are cheery posters telling us that it's about what you can do. In schools and vocational rehab programs, even in settings specifically for people with disabilities, the opportunity to get a job and live independently is presented as merely a matter of proper effort, enough striving, and a “belief that you can” (cue rainbows and ponies). But if you live for a day with a severe disability, it becomes clear immediately that success is more complicated for us than putting in a proper effort.

A person with a disability can work hard for his or her entire life, and still if the salary earned is not enough to pay out-of-pocket for personal care expenses and still have something left over to live, that hard-working American, that person who once sat in a classroom as a small child and was told that if you can dream it, you can do it, remains a prisoner to a program that operates as if a wink of money means you will no longer need help paying for expensive care that essentially enables you to function. As much as I want to be a young idealist and believe that America rewards people who work hard, I feel cheated by the complete absurdity of the system. Society says go to work. Get a job. Try hard. Study hard. You'll get what you deserve, and if you don't, it's because you're lazy.

To all those out there with this judgmental attitude, listen to the facts from someone that would know. There are millions of people with disabilities who are working hard, very hard. Maybe harder than some others without disabilities. We are not lazy and we are looking for a way to lift ourselves up. But the opportunity is frequently taken away by a system designed based on antiquated foolish ideas about what it means to be disabled. Understand that it makes zero sense to ask someone to go out and get a job and then as soon as he or she has any income, to take away the supports that make it possible to go to the job. It is disheartening at best and crushing at worst that your fellow citizens do not have the same opportunity to save money, to build their dreams, to secure their future, without giving away the lifeline services that help us remain part of your community and to contribute as we have been called to do. When the issue was explored in the April 23 edition of the Washington Post, Harold Pollack, the author of the article, and sibling of a disabled brother, Vincent, said: “You can generally keep your house or your car. That’s pretty much it. You can’t have that emergency fund on hand in case the muffler or the furnace breaks. And what about the stuff Medicaid doesn't cover? It’s nice to get your teeth cleaned or just to buy a Big Mac every once in awhile. Because of such means-testing, that new mother is forbidden from setting any money aside for her child’s education. That food services worker living with intellectual disabilities can’t save up for a nice vacation” (Pollack 2014).

That doesn't seem congruous with the simplified rhetoric of “you can do it if you try”, does it? Is it justice that a person with a disability can try and try and try and try and try and still be denied the right to save that money, to take that job, to accept that promotion, without fear of losing the eligibility that allows him or her to literally get out of bed in the morning, get dressed, and go to the bathroom? I don't think so. That is not the America I was raised to dream about, but that is the country in which we are living. People like me should not have to depend on a system that makes us fear our own success as much as our failure. Achieving the financial stability we deserve should not make us afraid that we won't be able to fund somebody to take care of us in our own homes anymore. Says Pollack, “If you’re on Medicaid because you had a spinal cord injury, you face punishing limitations on your allowable financial assets. If you qualify for Medicaid on the basis of low-income, you don’t face the same limitations. There’s no real justification for this inconsistency”(2014).

I should not live in a society where I work hard in school and display the potential to get a successful job, and yet lie awake sometimes terrified that if I pursue the goal that will allow me to contribute, and presumably make a salary, that I will be living in a cardboard box (with a ramp of course). Nor should I feel the same terror for my friends who are also bright, creative world-changers in spite of and because of their disabilities. Then as Pollack mentions, comes the added issue of classism. Those with the resources to hire a skilled financial planner may find a way to avoid financial catastrophe while keeping their supports. I am fortunate to have a family and friends that I know will look out for me until my last day and help me come up with creative solutions.

But for those who are not so lucky, the system perpetuates an almost inevitable unstable future. For example, in the Washington Post article, a woman with fewer resources was forced to leave all of her money to her nondisabled son with the understanding that half of it belonged to her disabled daughter. However in these situations, there is no guarantee that the money will be used appropriately or that it will not be stolen from the person to whom it truly belongs (2014). If I do not speak up for the people not as fortunate as me and merely secure the future for myself, I have accomplished nothing.

It's time to break the cycle. It's time to free my people. It is time to show them that the American dream stands on two feet, but also on wheels, crutches and canes. It's time to create policies that do not punish people have to ask for help, and to create policies that honor the idea of interdependency instead of institutionalizing a sense of dependency guilt and dependency shame for those who cannot live in an environment of “rugged individualism”. The fact is that nobody can live without help, with or without a disability, but unfortunately the type of help people with disabilities need is stigmatized, even though if we live long enough, we will all need this kind of help someday. An opportunity for change is happening. But it requires the concern of every citizen who cares about the future, not just those with a direct connection to a person with a disability. Anyone who's ever loved anyone or believed in justice should care about this issue. To those who don't think it affects them, remember that you one day could acquire a disability in the blink of an eye, or that one day your beloved child, who right now may just be an idea, could have a disability. It is called the ABLE Act. ABLE stands for Achieving A Better Life Experience, and this bill, if it gathers enough support in this session of Congress, has the potential to solve many of these problems. According to the National Down Syndrome Society,                 
The ABLE Act would amend Section 529 of the Internal Revenue Service Code of 1986 to create tax-free savings accounts for individuals with disabilities. The bill aims to ease financial strains faced by individuals with disabilities by making tax-free savings accounts available to cover qualified expenses such as education, housing, and transportation. The bill would supplement, but not supplant, benefits provided through private insurances, the Medicaid program, the supplemental security income program, the beneficiary’s employment, and other sources. An ABLE account could fund a variety of essential expenses for individuals, including medical and dental care, education, community based supports, employment training, assistive technology, housing, and transportation. The ABLE Act provides individuals with disabilities the same types of flexible savings tools that all other Americans have through college savings accounts, health savings accounts, and individual retirement accounts. The legislation also contains Medicaid fraud protection against abuse and a Medicaid pay-back provision when the beneficiary passes away. It will eliminate barriers to work and saving by preventing dollars saved through ABLE accounts from counting against an individual’s eligibility for any federal benefits program” (2014).
At a time when the government is polarized that almost every issue, we have an amazing chance to work together. This is a bipartisan, bicameral (both House and Senate) effort.  The bill is currently in committee, but needs more attention and more support to warrant a floor vote during this session. Many senators and representatives are yet to sign on. We need to remind these people that disability does not pick a political affiliation, and we all deserve the chance to use our talents.
I am a person with a disability. I am a student who works hard every day, and plans to graduate with honors. I am a person with big ideas, anxious to change the world. I would love to someday own an apartment, or even a house, to take a vacation, and to raise children of my own. I shouldn't have all of that in jeopardy if I want to keep the supports that I rely on every day. In addition to all of these things, I am an American, and I want to believe again, with the same youthful hope we instill in our kindergartners when we teach them about the Fourth of July, that everything waiting for a hard-working person without a disability is also waiting for me. Dear Mr. President, dear Congressperson, dear friend, dear neighbor, dear fellow human being… Make me believe again. I know we can do it together.
References
Pollack, H. (2014). How Medicaid forces the disabled to be poor… but some bipartisan help is on the way. The Washington Post. Retrieved from http://www.washingtonpost.com/blogs/wonkblog/wp/2014/04/22/how-medicaid-forces-the-disabled-to-be-poor/


                                      Image description: 2013 National Disability Employment Month poster. Features people with various disabilities in circular bubbles In purple at the top: Because we are all equal to the task. In white below the photo: National Disability Employment Awareness Month. In purple: What can YOU do? Poster background is blue and green.