An Open Letter to the Artist

An Open Letter to the Artist

By Kathleen Downes

Make room in your mind

For my curled up arm

My thumbs tucked stubbornly

Between two fingers

Paint my crooked figure

Pulled just slightly left

Draw my knobby knees

Great bulges on gently used legs

Make space in your sketchbooks

Your magazines, your films

For ribs that jut like mine

And please, don’t cover my scars

Take note of the way their fading red

Swirls into my skin

Like the mark of a time-honored tribe

And find a story within them

Look for the spots

Where the sun sneaks in

Between my braces and my socks

And love them, like I do

See my long toes that curl

When I speak my mind

Like an artist’s muse

Capture my bony, sloping shoulders

Don’t hide the wheelchair that cradles my body

Let it challenge what you thought

You knew about beauty

And think again.

Don’t see me as a fractured work of art

But instead, as a wildflower

That bursts in bloom

When seen through a lens of love

"Fearfully, Wonderfully Made": No, I Don't Need You To "Heal" Me

I truly cannot make up some of the things that happen to me when I am just trying to go to school. This past week, as I was on my way back from class, a young man about my age stopped me, saying, “Can I ask you a question?”

Hoping it would be about the location of the vending machine, the time, or the date, I said yes. The young man proceeded to ask, “Why are you in a wheelchair?” Let me be clear, people with disabilities have no obligation to discuss how or why they came to be in a wheelchair in a random public place. It's actually pretty bizarre that most of the general population still thinks it's a fair question to ask a stranger. In fact, it was very tempting to tell him that I was in a wheelchair because my aide put me there this morning. But hoping I could give him a little educational moment for Valentine's Day, I proceeded to explain that I was in a wheelchair because cerebral palsy had damaged the portions of my brain responsible for voluntary movement among other things. Thinking that this was a far better Valentine's Day gift then a heart-shaped pizza or a box of assorted chocolates, I began to roll away.

But there was more. The young man replied that he believed one of the things God did for people like me was heal them. The continued prevalence of this line of thought is one of the things related to my disability that I struggle with the most. It remains so acceptable to challenge the wholeness of others based on the concept that my life must have less value because I can't walk. I do not think the young man's intentions were bad; in fact, they were very good. What disturbs me so is how readily a complete stranger summarized the quality of my life based on the ableist assumption that I need to be fixed. What disturbs me is how many people would see no problem with his quick assessment of what it must be like to be me. I believe in God, and further, I believe that a disabled person is not an accident or an error of judgment, but just another interpretation of God’s image. But this story is not about God, to tell you how to think about God, or even to challenge you if you don't believe in any God at all.

This story is to warn other people not to see me or anyone like me as a broken thing. This story is to show you that pity, stereotypes, and assumptions are not harmless things that inconvenience one person. Pity, stereotypes, and assumptions, repeated and spread billions of times over build up, and slowly, insidiously, create a whole society that does not see worth of anyone with a disability. The belief that I must lead a sad, tragic life builds systems that keep some and not others in a place of power. It keeps characters that look like me off the TV and out of the movie theater. It makes little girls and little boys seeking just one doll that resembles them come back with nothing. And when little girls and little boys with disabilities become the adults they ought to, it makes them wonder why the world just can't fathom that they could be happy.

They could be happy, with or without the ability to walk, or put on their own shirt, or jump up in the air. Those things say very little about the meaning of the life. Few people reflect on their lives and remember all the times they could tie their own shoes or go to the bathroom on their own. But they will remember their family and friends, they will remember the laughs they had, and perhaps most of all how others made them feel. All people deserve to feel like they were made with purpose, love, and dignity… “fearfully, wonderfully” made. Whether or not a person believes that he or she was created by God, I refuse to believe that anyone is made by mistake. Regardless of one's willingness or not to be seen as “created in the image of God”, we were all created in the image of something beautiful.

“All” does not exclude people with disabilities. With that thought in mind, I told the person matter-of-factly that I did not need to be healed. If he was created in the image of God, then why wasn't I? He looked a little stunned, and asked to pray for me anyway, this time not for healing, but to help me show other people that they too are created in the image of God. I may not have changed how he perceives me or anyone else who looks like me, but in the very least I changed the contents of his prayer to one based on the understanding that I am “OK” the way I was made.

To that young man, wherever you are, remember me when you consider what it means to live a good life. Remember that I feel lucky to be here, and I spend very little time imagining a life in which I can walk. Go heal broken things, broken things like attitudes, and misconceptions, and prejudice. Go heal a society that has starved some of acceptance, and don't waste time trying to fix things that are not in need of repairs.

Waving Back: On Staring and What To Do With It

Sometimes the world does not know what to make of me. I have been stared at for all of my life, sometimes out of interest and curiosity, and just as often out of plain rudeness. Even though I like to think of myself as a routine part of a diverse society, it seems that so many people are just not there yet. I suppose the sight of me is discombobulating, or at least surprising sometimes. My small, slightly crooked frame resting in a black wheelchair that is, and always has been, a little too big for me. The constant jingle of the lanyard around my joystick, and the unnecessary number of pens spilling out of the side pockets. The shreds of colored fabric, the pink exercise band hanging limply off the back of my chair, the ever-growing collection of social justice, dark humor, and snark themed buttons rattling on my headrest.

 It’s a lot to take in sometimes. I get that. Still, it can be saddening to know that people often don’t know how to look at me. Even sadder is knowing that some people just won’t look, because it’s easier not to, and easier not to think about the attitudes and assumptions that put the uncertainty in their gazes. Trust me, I don’t enjoy being stared at like a lab specimen, but I’ve spent many years thinking about what to do with those stares, how to handle them, and how to prevent them from becoming downcast eyes that render me invisible. I don’t want to be stared at, but much less do I want to vanish, to become unseen by a world learning how to “be polite”. 

This is what I believe occurs when embarrassed parents redirect a child’s widened eyes, and shuffle them away, as if hoping that child will forget what, and importantly, who they saw. From that well-intentioned attempt to salvage a child’s manners comes the beginning of the fear, the shame, the idea that my corner of the world is not worth being understood. That kid grows up, and becomes an adult whose gaze shifts dutifully towards the ground, because that is the procedure when making sense of my presence. How much I wish that each of those embarrassed mothers and fathers would tell the child that it’s okay to say hello. How much I wish they took the time to reject the culture of shifting eyes, mystery, and misunderstanding. I love children, and when the tiniest, most impressionable among us are hastily ushered away from me, I begin to lose touch with those that I consider our hope for the future.

Just several weeks ago, as I approached a local pizza restaurant, a small girl with brown hair and chubby cheeks was pressed against the window. Her tiny finger pointed toward me, another trying to find a place for me in time and space. In this moment, I decided what it was I had to do. This precious child was looking at me, and not in a situation where she could be whisked away before I looked back. Returning her gaze, I lifted my hand and waved. Then, something beautiful happened. She waved back.

 This simple exchange made us human to one another, and gave me the hope that this little girl may continue to wave back as she grows older, keeping me visible to the world around me. The glass between us seemed a perfect metaphor. We are living two very different lives, and in some ways, there will always be a slight space between our worldly experiences. Like two people from drastically different cultures, some things in our lives will distinguish our fates from each other. But ultimately, we can choose to not just look at, but to see one another. We can notice what we do have in common, and convert the silence and fear to appreciation for each other’s humanity. We can affirm the presence of all people. We can wave back.

Tragedy in Seventy Seconds: The Death of Keith Vidal and the Importance of Coming Together

I wish this story never had to be printed, but perhaps it is a call for people with all types of disabilities to come together. When we all have different diagnoses, it can be easy to see what separates us. Because we’re… well, different. It can be easy to say, “I’m not one of those people; his or her story has nothing to do with mine.” I am not trying to shame those who have perhaps indulged in these easy options, but rather to teach them that today is the moment to think again. To recognize the power of a cross-disability coalition, one that empowers, supports, and protects its members without hesitation. If for no other reason, build this dream in honor of Keith Vidal.

Keith was an 18-year-old young man with schizophrenia reportedly shot and killed by a North Carolina police officer. Keith’s family called the police for help during an episode in which he threatened his mother. Despite the fact that two officers arrived and successfully calmed him, a third allegedly arrived “fourteen minutes later” and shot him as he lied on the floor after multiple shots with a Taser. The shot was fired seventy seconds after the third officer arrived. Seventy. In just over a minute, an officer that “didn’t have time for this” took a parent’s child, snuffed a young life, and reinforced the culture of fear and misunderstanding surrounding people with psychiatric disabilities.

Nothing can be done now to bring this young man back, but I hope this tragedy is one that will demonstrate how far we have to go to improve our attitudes toward psychiatric disabilities in this country. If we work together to promote understanding and education, perhaps we will see a day when people with these diagnoses will be treated with dignity. Yes, Keith’s disability is dramatically different than mine. I will never face the same exact set of challenges as he did, but I count him as a brother in the disability movement, and a fellow human being. Keith was someone’s son, someone’s friend, someone’s brother. Someone with a future. Keith matters to someone, and so he matters to me.

Perhaps you have a disability much different than Keith’s, or maybe quite the same. Perhaps you will have one someday. Or maybe you don’t have one at all. No matter the relevance of his situation to your own experiences, Keith is a person. Keith is a dramatic example of what can transpire when stereotypes, prejudice, and fear become bound to our culture. He deserves to be alive today. Instead, his life was ended in less time than it will take you to reach the bottom of this page.

 See the article at this link: http://usnews.nbcnews.com/_news/2014/01/06/22205826-family-demanding-answers-after-police-fatally-shoot-mentally-ill-nc-teenager?lite

Maverick Higgs, Healthcare Justice, and Transplant Discrimination

Yet again, our culture is quietly suggesting that the lives of people with disabilities don't have the same value as the lives of others. I wish I didn't have to comment on this story because I wish these stories didn't exist. But if I don't, who will? Recently, I came across the story of infant Maverick Higgs, a baby born with a severe heart defect called hypoplastic left heart syndrome in 2012, and still after two surgeries at Morgan Stanley Children's Hospital in New York City, he remained in heart failure. Maverick also has a genetic disability called Coffin-Siris Syndrome, which causes neurological and developmental delays, including the possibility of an intellectual disability. When Maverick was found to need a heart transplant to save his life, the doctors there deemed him ineligible for the surgery on the basis that the genetic defect would put him at risk for tumors and other infections. When his mother did her own research and contacted an expert on Coffin-Siris, the information was proven to be false. Coffin-Siris did not normally cause immunosuppression and was not an ethical reason to be denied a transplant. What we have here is a case of discrimination.

The fact that the probability of severe disabilities later in life caused this child to be deemed ineligible for transplantation is a problematic statement about the assumptions that even our most skilled healthcare professionals harbor about the quality of life of people with disabilities. Maverick’s story should scare you, because it's another case that clearly demonstrates the danger of determining the value of another person's life based on what you think you know. Rather than treat Maverick as a young person with a hopeful future will happens to have a disability, he was dismissed by those whose vision of his future was too narrow, and plagued by the low expectations that haunt today's disabled youth.

When his parents sought other help at Children’s Hospital of Philadelphia, the doctors stated similar reasons for transplant denial, stating that Maverick’s syndrome would put him at risk for infection. Meanwhile, Dr. Grange Coffin, who identified the syndrome, said the information just wasn't true. A doctor from CHOP later called Maverick’s mom and explained that it was not his genetic disability, but the “big picture” that made her son ineligible. Sadly, to so many people, the assumed “big picture” is that the lives of people with disabilities have no value in the long run, and decisions are made based on their perceived lack of potential. I am not a doctor, but I don't need a medical degree to know that all of us do have potential. Our lives only become lesser when we are choked with oppression and hatred by people who sum up our lives based on preconceived notions. Transplant candidates are chosen based on who is determined to benefit most in the future. The terrible truth is that those who are disabled are not treated as though they have a future. Children with and without disabilities should grow up feeling treasured and supported, knowing that those around them will view them as society’s greatest resource.

If society does not see children with disabilities’ value, it is not because it is not there. It is because no one has looked very hard. Our healthcare professionals, our children, and their families must be taught to expand their view of what is “normal” and learn the meaning of inclusive love. It is the job of doctors to make choices that help patients live a healthy life, not to make choices about who is worthy of that life. Finally, Maverick’s parents took him to Boston Children’s where he was accepted as a patient. He gained weight at last and made such improvements that he no longer needed a transplant. However, if he does someday, Boston Children’s will accept him.

This story has a happy ending. But it is fraught with warnings. Warnings about the danger of drawing conclusions about who should live and die. Warnings about the insidious and deadly consequences of ableism. Warnings that must be taken seriously, before it’s too late, and we’ve done something that violates others’ human dignity. Sweet Maverick, you are aptly named. You deserve life, and anyone who thinks you don’t qualify for a heart doesn’t have one. Grow strong, kind, and brave so that one day all who doubted you will feel the deep sorrow of their judgmental beliefs. And if anyone asks what the “big picture” is, tell that person this: the big picture is that you are loved, and just beginning to live a beautiful life.

See the article here: http://www.cnn.com/2013/11/30/health/disabled-transplants/