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].

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

National Down Syndrome Society. The able act. Retrieved from http://www.ndss.org/Advocacy/Legislative-Agenda/Creating-an-Economic-Future-for-Individuals-with-Down-Syndrome/Achieving-a-Better-of-Life-Experience-ABLE-Act/

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. 

No More Names: The Clarence Family Tragedy & The Violent Trend That Must Stop

This kind of déjà vu is the kind that makes my stomach sink. Another story about innocent people with disabilities murdered by a caregiver. Tania Clarence, a 42-year-old mother from Britain, is accused of killing her three children with spinal muscular atrophy (SMA), twins Max and Ben, and daughter, Olivia, all under the age of five. Sadly but not surprisingly, the media coverage focuses only on how "devastating" the neuromuscular disease is, how much physical care the children needed and how burdensome that care is for the non-disabled without mentioning how devastating an act of violence directed at innocent children is. See the story here  The cycle has to end.

A hideous crime is a hideous crime regardless of if or not the person killed had a disability. Had the same crime been committed against able-bodied children, the article would've taken on a much different tone. However, with the coverage of a murder of a disabled child comes the underlying societal assumption that these lives did not carry the same value as others and don't matter as much when they are taken away. We have to stop presenting murder as an acceptable and even natural response to people with disabilities. I am not denying that supporting a person with a disability and living with a disability can be extraordinarily difficult, but we cannot use that as an excuse to turn to violence. Murder is murder, period. The justice system cannot let off some and not others based on the perceived value of the lives they took away.

I regret that this mother felt so alone that this seemed like the only solution. However, her loneliness and despair cannot be used to justify three lives snatched because they were reduced by society to nothing more than a list of medical needs. Life with a disability is so much more than that. In many ways, our lives are very difficult, but ultimately, we deserve to be treated as another aspect of a diverse human family. Many of our difficulties arise from ableist assumptions about what kind of life "is worth living". That is not a decision for our non-disabled peers to make. The lives of people with disabilities belong to them, and no one should have to live in fear of someone else deciding that he or she is better off dead. This is me, a person with a disability who is not so different from Max, Ben, and Olivia telling you not to write us off. If we continue to allow our story to be told by people who can only see it with fear, judgment, and pity, horrendous acts of violence will continue unchecked, stealing away bright lives under the cloak of mercy.

We live in a very sad world if those who require more help, more time, or more patience can be eliminated without the public outrage afforded to all other victims of violence. Many of my friends have SMA, and continue to live full, rewarding lives. They go to school, have friends, and have families. They have dreams worth fulfilling and lives worth living. They are not suffering from SMA. They are living with it, and they have a beautiful perspective from which we can all learn.

What saddens me as well is that the article said nothing about who the children were as people. They were merely described in terms of bleak medical jargon. I sit here and wonder what their favorite foods were, what they wanted to be when they grew up, what songs they liked to sing, and most hauntingly, how afraid they must have felt when the woman chosen to love and protect them slaughtered them. Yes, they had disabilities…. But killing them cannot be excused, much less disguised as an act of compassion.

Those looking to be compassionate should devote their time to improving our broken service systems, getting people the quality care they deserve, and reminding the world that people with disabilities have rights. The attitudes that classify us as less worthy lives challenge us more than our bodies ever will. Our lives are our lives, and no one has the right to dismiss them.



To Olivia, Max, and Ben, I promise you that I will keep fighting until the day no one has to go through this ever again. I want to live in a world where people with disabilities like us can grow up proud, unapologetic, and embraced with the same enthusiasm as any other. You were not and are not lists of medications, sleepless nights, or burdens like some have suggested. Your names are Olivia, Max, and Ben, and you are people. People who had so much left to contribute to the world, had you been given the chance. I pray that one day we will all be together in Heaven, where I will give each of you a big hug, and remind you how glad I am that you once graced the planet. Sleep tight, little ones, I love you so.

Check out these great individuals with SMA living beautiful, meaningful, WORTHY lives.

Dear New Family

More Than Pretty Pictures: The Media As A Reflection of Social Perception & What We Can Learn From The Felix Awards

I have mentioned this issue before, but in a media saturated world, I think this message bears repeating. The way that people with disabilities are portrayed in the media matters. They may seem like simple pictures, memes, paintings, posts, and movies to you, but they are more than that. They are a reflection of my reality. They are the ideas that tell people who will never meet me or someone like me what to think and how to treat a person with a disability. If people are disabilities are not included in the media at all, it tells those whose only exposure is through these sources that people like me don't matter enough to even appear in works of fiction, never mind it real scenarios.

These portrayals honor or shame my way of life, and too often, they shame. They present stereotypes and exaggerations as the truth, and the truth is usually taken out of the hands of the group to which it belongs…. That is, the people with disabilities themselves. That is the fundamental problem with consistently offering roles of disabled characters to people who do not actually have disabilities, which has been called "disability drag". Then will come the media storm about how the actor, non-disabled of course, looked so authentic, so poignant, and almost made us believe that he was “one of them”. The fact is we are not characters to be played by those seeking praise for putting on a costume and mimicking us. For every nondisabled actor who receives the role portraying a person with a disability, I assure you that there was a person with a disability anxious to portray his or her own truth denied the opportunity. And the disability drag game continues, the praise and the awards continue for “looking so real” as if there are no “real” disabled people left to tell their own story, or we are too exotic to be found in the present day. If you are looking for a real dinosaur to cast in the role of himself, I understand the need for mimicry. But people with disabilities are not a fossilized population whose story must be resurrected by others for lack of first-hand accounts. We are still here. Our history is still being written. We are past. We are present. We are future, and we are capable of representing our people.

I would perhaps be less bothered by the concept of disability drag if people with disabilities looking for acting roles had the opportunity to turn the table and go able-bodied to get a job. But the fact is, we don’t have the ability to walk or move or ditch our wheelchairs for the sake of a role, and no matter how good we are at acting, we will never be chosen for a role intended for an able-bodied actor is our disability is visible. Thus it is rather difficult for an actor with a disability to get a meaningful part given that the available roles are so limited, and then what they do appear, they are often given to a person without disabilities lauded for doing such a good job imitating us as if we are no longer alive to live, not imitate, the disability community.

But that aside, the portrayals themselves reflect the misinformation still circulating about us. Still, most of the disabled characters are either superhumans or pity objects awash in self-loathing. Media makes people who are invisible in society visible, and when the only truth made visible is a stereotype, the attitudes that pity object or super cripple are the only shoes we can ever fill are allowed to continue. It is true that some people with disabilities may have sad lives, but this is not the only aspect of our story that exists. Just like people without disabilities, our lives are happy and sad, and simple and complicated, and joyful and frightening and hopeful and uncertain, depending on the day. Yes we suffer sometimes, but so do many people without disabilities. As I've said before that's not the nature of life with a disability, it is the nature of life.

 Fortunately for able-bodied people, they are portrayed so frequently that one experience is not extended to the entire group. But people with disabilities are portrayed so infrequently that the few times they are will be used again and again to make assumptions about an entire group. That is why characters with disabilities and people with disabilities need more time on the screen, in the books, in the magazines, on the TV shows in varied storylines that represent life on the full spectrum of human experience. This is especially true for television shows and books directed at children, who are both our most impressionable minds and the minds of the future. If we change the way they look at us now, perhaps when they grow into adults, greater strides will be made towards acceptance and not misconceptions. Perhaps kids who have disabilities will more often be able to identify someone who looks like them in their storybook and feel proud to be disabled instead of ashamed or afraid. For every Forrest Gump doing extraordinary things, meeting famous people and running across the country, for every Colin from The Secret Garden wallowing in bitterness on the other end of the spectrum, there are people with disabilities in every nook and cranny in between, seeking and living ordinary lives, that embody just another variation of a diverse population. They are mothers and fathers, friends and sisters and brothers, teachers, and students, far both from becoming a superhero and becoming a tragedy.

In my travels in cyberspace, I was fortunate to connect with the folks at Extreme Kids & Crew in Brooklyn New York, an organization that focuses on recreation and acceptance in safe spaces for people with disabilities. This year, they will be giving out the first Felix Award, which strives to do exactly what I have been discussing. To change the perception of what it means to be disabled today, and honor those who use the arts as a vehicle for change.

They state that, “While living 
with disability and caring for those with disabilities is no picnic, neither is it the gloomy tomb it is often
made out to be. Indeed the challenges, pains, frustrations, and injustices associated with disability can
lead to creativity, resilience, humor and novel ways of perceiving the world. Much of the disconnect
between what disability looks like from the outside and what it feels like from the inside has do with
misunderstanding and inexperience.”

 What a beautiful place, or more beautiful place, I should say, the world could become if more people in the arts and in the world understood this, and honored the Felixes of the world in a way that treated their lives like the varying stories that they are.

Or as EK&C so eloquently put it, if they “moved the general public’s perception of disability away from 
fear and loathing towards a more nuanced wonder at the
multiplicity of being and the diversity of experience.” I think wonder is just what we need, wonder at how lucky we are that all people are different. Different not less. Wonder that will allow kids with disabilities and their families to look around and know that they don't have to be afraid because the world wants them to grow up proud.

            The arts are an amazing and peaceful tool to start sculpting that wonder for future generations. Your pens and paintbrushes and pencils and crayons are not just mundane objects. They are those things that can give a message to the world, that can construct a person or a group as important or unimportant, visible or invisible. They are those things that can give people with disabilities power, and quietly but mightily reshape the way society sees us. They are the method we have to preserve our truth when one day we are gone as individuals, and all that remains are the renderings we have left behind to tell our stories. When the history of my people is told, long after I am gone, I want the world to have an imprint of my life that goes beyond a stereotype. Artists, use your instruments well. Whatever you bring forth with them will tell our children what to think about people with disabilities and have a direct impact on the thousands of children with disabilities shaping their self image in a world too often not made for them. Make your choices carefully, and use those instruments for good.

Check out Extreme Kids & Crew's Felix Awards at http://extremekidsandcrew.org/news/introducing-the-felix-awards/