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/

I'm Not Your Fodder For A Feel Good Story: People With Disabilities & The Assumption That Friendship Is Charity

If the “inspiration porn” discussed in my previous post nauseated you, you may want to take something to settle your stomach now. The media is at it again, putting people with disabilities on a pedestal for living life, or worse, praising the non-disabled for interacting with us. A few weeks ago, the media was buzzing with the story of two football players at North Carolina who ate lunch with a fellow student in a wheelchair. Reporters went on to praise the football players for “their good deed”, even going so far as to call them “heroic” or “inspirational.” Hold up, wait a minute. There are several things that are beyond problematic with the media’s assessment of the situation. Eating lunch with fellow students is a completely ordinary act, to which people with and without disabilities are entitled. Why should a disabled person having friends make the news?

When people with disabilities being genuinely included in friendships is an item that makes the news, we as a society assume that isolation, exclusion, and loneliness is not only the norm, but the natural outcome for people with disabilities. Furthermore, praising non-disabled people for merely being with us implies that we are not deserving of friendship, or not worth spending time with in the absence of money, volunteer hours, or “feel good” attention from social media outlets. The fact that someone may just want to be with a disabled person for the sole purpose of eating lunch seems to be too much for the media to handle. Disturbingly, the photo is accompanied by hashtags such as #volunteerism. Volunteerism? It is obvious that our world remains in a terribly backward place if spending time with a person with a disability is considered an act of charity. They should try #ableism, if the writers are seeking greater accuracy.

This disastrous attempt at a feel good story made me feel sick, and it should do the same to you. These kinds of accounts have messages between the lines. They say:

Gasp. People in wheelchairs… with people! Don’t they sit alone?

Gasp. Someone being a friend to a person in a wheelchair! How benevolent!

Gasp. Let’s reward others for simply acknowledging them!

Just because I have a disability does not mean being with me is community service. I am a person worth getting to know, and anyone who considers eating lunch with me an act of charity to be documented on Reddit is not a friend. Unfortunately, our culture often trains non-disabled children to view those with disabilities exclusively in the context of volunteerism and charity. Thus, inspiration porn like this news story is born.

Inclusion should not be shocking. Friendship should not be newsworthy, and no one should assume that the only company a wheelchair user will have is the result of an act of laudable compassion. One article even suggested that the football players were helping a “less fortunate man”. Not only does it imply that people with disabilities must have a lesser quality of life, it implies that the only friendships we will ever have will exist because someone feels sorry for us.

The article was followed up with a companion story stating that the original photo was not what it appeared. The person in the wheelchair was not sitting alone. The football players were not doing “a good deed”. In fact, the young men had been friends for a while. It is disgusting that the writer had the audacity to assume that the person in the wheelchair was sitting alone, and to assume that the scene only developed in the spirit of volunteerism. We owe it to our children and the adults they will become to treat people with disabilities as ordinary people, not objects of pity. If we begin there, people with disabilities sitting alone will be a terrible exception, not a rule. We will no longer be surprised when people with disabilities engage in meaningful relationships, because such things will be expected. And the next time someone sees a person with a disability surrounded by friends, he or she will barely look up, and instead search for something out of the ordinary.

See the articles here: http://nesn.com/2013/11/two-north-carolina-state-football-players-decided-to-eat-lunch-with-student-in-wheelchair-sitting-by-himself-photo/

http://abclocal.go.com/kgo/story?section=news%2Fnational_world&id=9335306

IMAGE DESCRIPTION FOR ARTICLE: TWO FOOTBALL PLAYERS ARE SEATED AT A LUNCH TABLE WITH A YOUNG MAN IN A POWER WHEELCHAIR.

Thoughts on the Tim Bowers Tragedy

This post is terribly difficult to write. But the conversation needs to happen. One of the most significant threats to people with disabilities in this country is the belief that our lives are just not worth living. It’s a belief that permeates the media, sneaks into casual conversation with a flippant “I’d rather die than be in a wheelchair” and moves stealthily into our culture tucked neatly beneath the cloak of mercy. It’s a belief that declares bodies “broken”, bodies deviant, and people confined. It is a belief that relies heavily on assumptions about the quality of a life like mine, and a belief that is rarely questioned. My wheelchair is routinely treated in popular culture as worse than death by people who have not lived in it or considered that just like any other life, mine has moments of great struggle and moments of great joy. That isn’t the nature to life in a wheelchair. That is the nature of life.

This being said, I was devastated to open up the newspaper and read the story of 32-year-old Tim Bowers, who sustained a severe spinal cord injury a few weeks ago that would have left him a quadriplegic. Just one day after the accident, Mr. Bowers was allowed to remove life support and die after learning of his diagnosis. One day. Where was the counseling? Where was the opportunity to talk to another person with a severe disability? Where was the chance to explore his options, and learn about his “new normal?” I understand that traumatic injuries are devastating, but it is natural to feel despondent just one day after the accident. I believe with my whole heart that had a non-disabled person been feeling suicidal, the health care system would quickly suggest counseling, quickly take anti-suicide measures. But Mr. Bowers was allowed to determine the value of his new life on the spot. Nobody questioned the hasty assumptions, the hegemonic model of a disabled life as a terrible one. That should scare you.

I am not minimizing the life-altering quality of sudden disability, but it is disturbing how quickly the newly disabled are presented with a bleak picture, made to feel like a burden, and never given a chance to consider that life in a wheelchair does not have to mean the end of a valuable life. The problem in society is that it carelessly allows people to believe that it is the end, no questions asked. The “no one would blame you if you want to die” attitude says “Yeah, I don’t see the value of your life either” and people with disabilities can extinguish their lives unchallenged. We believe what we are taught, and we are taught to expect empty lives when we become disabled. I do not feel angry at Bowers for his choice, but I do feel angry at the world he lived in for making him feel like that choice was only natural.

It makes me weep that the world he lived in, the same one that I call home, engrained in him so deeply that a life in a wheelchair wasn’t worth it that he would rather die than face it. Tim Bowers was a young husband, a soon to be father. The world told him that he wouldn’t ever hold that baby, and made him feel that a wheelchair would make him less of a father. I wish I could have told him that holding a baby does not make you a father. I wish I could have told them that I too may never be able to hold a baby on my own, but I still dream of my future child, knowing that it is love, not motor skills that make a parent.

I wish he had been given time to realize that the world still needed him. Where are the cries of “it gets better” for people with disabilities, the reminders that support is out there? Where are the reassurances that it’s okay to ask for help? Aside from a few whispers from the disability rights community, they are not here, and society quietly, unequivocally agrees that no, our lives cannot possibly be fulfilling, and remains unwilling to answer the above questions, perhaps due to the shame that we haven’t bothered to come up with any good answers. Perhaps if we invested the time in creative support systems that we invest in negative media portrayals of people with disabilities, Tim Bowers would have made a different choice. Perhaps if we found time to go above basic standards for access, Tim Bowers would have woken up knowing that the world he lived in would find a place for him. Perhaps if people like Tim, and myself, were more frequently measured by their human potential instead of their financial “cost”, he would have thought to himself, I will be okay, because the world will embrace me. Instead, I sit here and grieve for him, and the attitudes that made him too fearful to carry on when his circumstances changed.

I hope that one day there will be no more stories like this, because we will know how much we are loved and valued no matter what our physical abilities may be. That we will not have to be afraid of how others will see us once we become disabled. That we will go forward knowing that we are entitled to a valuable existence. And no one will be hastily allowed to die because no one gave him or her a chance to learn how to live again. 

See article here http://www.dailymail.co.uk/news/article-2487986/Newlywed-Tim-Bowers-chooses-life-support-die-ONE-DAY-fell-tree-paralyzed.html