Friday, December 6, 2013

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.

Wednesday, November 27, 2013

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.


Monday, November 18, 2013

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. 

Sunday, October 27, 2013

It's Not My Job To "Inspire You": People with Disabilities and the Problem with "Inspiration Porn"

It lurks on your Facebook newsfeed. It creeps in the murky depths of Huffington Post, and finds its way onto every talk show imaginable. It is inspiration porn, and somewhere on the Internet, it’s just waiting to keep people with disabilities down.
Inspiration porn is corny, patronizing media that showboats disabled people for doing regular things. Regular, boring, hardly newsworthy things like walking down the street, participating in sporting events, and other mindblowing things like going to school. All things that people are supposed to do, mind you. Inspiration porn allows disabled people to become a commodity, shared, tweeted, emailed, and cooed about for the sake of a public that wants to be “inspired” by them, to see their everyday accomplishments and participation in life as an uplifting exception and not a rule. Using people with disabilities as “heartwarming” stories when they accomplish the same feats as their non-disabled peers implies a glaring lack of expectations for them. OH MY GOD. A person in a wheelchair ran a race! Society honored his right to participation! My heart be still! Call CNN! Perhaps you’ve been lucky and your newsfeed has not yet been cluttered by this terrible… I mean, touching, form of media. Here’s a few gems to give you a taste of the uproar it causes in the press when people with disabilities do things instead of sitting in their pajamas and eating chocolates… although even then, a short film may be produced or a fifth grader may be encouraged to take a photo of the Hershey’s wrapper for a “My Hero” essay.
The infamous “a disabled person going to prom must be on the news!” article. See here After a much too successful Google search, I came across this 2012 article. In the text, Foothill High senior Meagan Baker made the news for inviting “wheelchair bound” Ben Bunker to the prom. Excuse me, while I go throw up. People with disabilities are people. With feelings. They can be pretty and handsome. They can make good prom dates. They deserve to have dates with the quiet high school angst of every other. Why must we call the paper, alert the feel goodies when a person in a wheelchair goes to prom? To find his participation surprising is a blatant act of ableism, because he is merely taking part in the same age- old ritual as everyone else. The fact that a peer invited him to prom is framed as an act of charity by a media that seems unwilling to believe that someone may choose to go with him because they like him. 
It’s 2013, and we have 70 million disabled people in the United States. Still, inclusion is not a matter of course. Inclusion is not a normal part of life. It is seen as an elusive act undertaken only by the benevolent, who are given special attention for treating their disabled peers like part of the human family.
If your emesis basin is still empty, there’s more. A video went viral last year of a boy with cerebral palsy taking part in field day, which. he. is. entitled. to. do. His classmates are elevated to a saintliness of sorts for cheering him on and taking the time to run with him. This, folks, should not be anything for which people are publicly praised. Click here. The other children were supporting him. That’s what friends do. That’s what inclusion looks like. And it should be granted to people with disabilities in the same matter of fact manner that it is for every other child on the playground. When we reward able-bodied people for treating disabled people equally, it becomes an “extra special” moment instead of a civil right. It implies that people with disabilities are not otherwise worthy of inclusion, unless the public is hungry for a pat yourself on the back, warm and fuzzy treat.
And after the 30-second video ends, the same people are not challenged to think of the need to make all people a part of society, beyond the cornball segment to accompany your coffee. When inclusion and ordinary participation becomes so incredible, so rarely incorporated that it summons the media, we all have a great deal left to learn. I hope that one day, people with disabilities doing things will be allowed to happen without fanfare. Until then, you can keep your inspiration porn to yourself. And please, please know that I will crawl into a hole if you ever call me handicapable. You can stop fainting and gasping when people with disabilities leave the house. Truly, it’s becoming a public health concern. So, if you care about your health, save your fainting spells for something out of the ordinary. It would really warm my heart.