Nonscientific Research and the X Men

In the last few years I have written about many unpleasant social exchanges with people in Central New York. I have had doors slammed in my face, I have been screamed at, and I have been denied service in the local diner. I have had men drop to their knees and pray for my rotten soul. However, in the last three months I have not had any note worthy negative encounters. What changed? My son moved to Syracuse where he works for a large nationally known hotel chain. He is saving up to buy a car and for the last four months we have shared my car. This has been a pain in the neck. Both he and I are not exactly skilled in terms of our organizational abilities. He has been late a few times dropping off the car and has a penchant for doing so at the worst possible time. We have miscommunicated more than once. We have in short messed up meeting each other at the right time and place too often. The car sharing is less than ideal but is a short term issue.

I will readily admit I have no issues with ruthlessly exploiting my son's bipedalism, youth, and typical male strength. As he knows, he saves me oodles of time. What is carefully planned on my part is what he does for me. Certain routine things I do are social battlefields with bombs lobbed my way on a regular basis. Hence, I do my level best to have him put gas in the car. People routinely harass me when I do this by myself. Offers of help are often used as a means of denigration or false praise. The gas station is a particularly hostile environment when I am alone. Another social battle field is the laundromat. If I could change one thing in my life it would start with a washer dryer in my little place I call home. Based on nearly two years of using a laundromat I can state with some certainty everyone who washes their clothes at the laundromat took a wrong turn in life. The human range who access the laundromat is wide. Stoned college students. Miserable parents. Elderly drunks. Academics like me. Everyone I encounter appears to have a story and are too eager to share it. Those religiously inclined are magnetically drawn to me. They are desperate to cure my body and soul. When I am not impressed with offers of help the reaction is swift and violent. So when I have a large amount of clothes to clean or lets say a seasonal change of bedding I try and bring my son with me.  While he can't fold clothes well, he can fold towels and sheets. He speeds up the process and we get out of dodge promptly. His presence alone protects me. His protection is very much appreciated but I am deeply torn and troubled. I have hesitantly concluded my existence is not only an affront to others but I am vulnerable physically and socially. I am far from equal in the eyes of the so called normate that abound.

What do we think when hear the word wheelchair?What do people think when they see me?

I know what others do not think when the word wheelchair is uttered or when I am present. Competence, power, ability, disability rights, community, father, mother, brother, sister, employer, doctor, employee, home owner, renter, land lord, beautiful, handsome, sexual, sensuous, lawyer, professor, president, governor. None of these things are thought of when I am present. My life is less. I am less. My social status is significantly reduced. I am a diminished human being. I am an open book for all others who have no qualms about asking rude and intrusive questions foremost among them is can you have sex. This is hard and I forcefully reject the stigma associated with disability. Thus being in public is never easy because I reject assumptions associated with wheelchair use. I will admit some days I fail. I simply cannot leave my house; I do not have the psychic energy to deal with able bodied others. But out I go on a regular basis. I wish I could say I do so with pleasure but that would be a lie. I have a deep yearning. I am lonely and as I age feel all the more isolated and have an urgent need to connect with people like me. How I hook into disability culture is a challenge. I am envious of deaf people who identify as Deaf with a big D and have their own language! Where do we cripples call home? This has occupied much of my thought and I have thought long and hard about other minority groups in terms of identity and community.

I need to do something. I believe I have acted somewhat cowardly in recent months. I cannot use my son as a social shield. How can I be strong? How can I be a bad ass. Enter my colleague Diane Wiener, a human ball of energy and brilliance. She organizes a yearly event Cripping the Comic Con at Syracuse University. Frankly I am not much of a comic book graphic novel kind of guy but Diane makes me think. Inspired and looking for strength I googled the X Men and its creator Stan Lee. The X Men I learned were created in 1963 amidst the turmoil of the Civil Rights Movement. Then it clicked. Lee wanted to create a comic that that highlighted bigotry and racism via science fiction. Magneto and Professor X were direct correlations to Martin Luther King and Malcolm X. I think I am far too Professor X and need to channel my inner Magneto. Next time I go out this is how I desire to appear. Dangerous and frightening. Take that bipeds.

The Ethics of Choosing the Hospital or Heaven

Last Fall a firestorm erupted with regard to a young child, Julianna, whose parents asked her if she wanted to go to the hospital or heaven. A two part CNN story delved into the life of Julianna Snow, a 5 year old child, who has a neurodegenerative condition called Charcot-Marie-Tooth syndrome. For unknown reasons, Julianna's condition is severe. Her mother, Michelle Moon is a neurologist, and wrote about her daughter on a blog she maintains. Link: https://juliannayuri.com Below is a passage that sparked the controversy:

Me: Julianna, if you get sick again, do you want to go to the hospital again or stay home?

J: not the hospital

M: Even if that means that you will go to heaven if you stay home?

J: Yes

M: And you know that mommy and daddy won’t come with you right away? You’ll go by yourself first.

J: Don’t worry. God will take care of me.

M: And if you go to the hospital, it may help you get better and let you come home again and spend more time with us. I need to make sure that you understand that. Hospital may let you have more time with mommy and daddy.

J: I understand.

M: (crying) – I’m sorry, Julianna. I know you don’t like it when I cry. It’s just that I will miss you so much.

J: That’s OK. God will take care of me. He’s in my heart.

Like many others, I found this discussion deeply disturbing. Can a 5 year old child understand death? Should the discussion have been presented in such a polarizing perspective? Essentially, the mother asked her daughter do you want to live or die. Predictably, CNN and other news outlets relied heavily on emotion. Link: http://edition.cnn.com/2015/10/27/health/girl-chooses-heaven-over-hospital-part-1/index.html Just as predictable, people with a disability, myself included, were taken aback at how Julianna's story was framed. A website was created, Dear Juliana, in which adults with comparable conditions wrote on line letters to Julianna. Link: http://dearjulianna.com I have not thought much about this case despite the fact I found it so disturbing last year. I was prompted to think about Julianna again as there was an excellent essay in MedPageToday by Christy Duan. Link: http://www.medpagetoday.com/PublicHealthPolicy/Ethics/57625  Duan is a fourth year medical student at Albert Einstein College of Medicine and an impressive writer. I think her essay about Julianna and the thorny issue of quality of life was spot on. Duan raised the issue of disability based bias when physicians address what constitutes a life worth living. As most people with a disability can tell you the general public and health care professions often grossly undervalue the quality of our lives. People with a disability routinely receive less care. The more significant the disability the less likely one is to receive appropriate pain management and aggressive life sustaining treatment. Duan wrote:

Instead of viewing disability as something to eliminate, we should appreciate it as a normal part of the human experience which adds valuable perspective. In doing so, we can focus on the real civil rights issue of accessibility and create a better world for everyone – regardless of disability.

Rather than view people with disabilities as defective, we should recognize our world as defective. Of noninstitutionalized adults, 12.6% reported a disability and 28.2% live below poverty. People with disabilities face significantly more obstacles in daily life. Over time, they've been withheld medical care, forced to live in state institutions with inhumane conditions, excluded from public education, denied jobs, prevented from voting, and involuntarily sterilized.

Given these inequities, the fight for assisted suicide is incomplete because it creates the illusion of choice. How can one truly choose death when one doesn't have access to existing resources that allow for a dignified life? The right to die and right to live are both important struggles for autonomy. But for people with disabilities, there can be no autonomy without the right to live with assistance. In Julianna's case, these biases could have fatal consequences.

It is the last sentence quoted above that keeps me up at night. Julianna is not an isolated case. Thanks to modern medical technology the number of people with a disability, children and adults alike, who are dependent upon medical technology is ever expanding. Our social response to those with severe disabilities dependent upon medical technology in the form of respirators, nutrition via g-tubes, power wheelchairs, synthesized voicing, etc. has been negative if not out right hostile. Life with a disability is perceived to be inherently less valuable. Hospital stays are tortuous. People who cannot walk are robbed of their abilities. Medical interventions are painful. The message is not subtle—people with a disability are a burden to their families and a costly drain on our health care system. Worse, people with a disability lives are devoid of value. They cannot work. They only exist. The idea of life with a significant cognitive and physical deficit is a fearful thing. I have heard the following for many years.

“I would rather die than be paralyzed”.

“I will die before I will let someone else wipe my ass”.

“If I lose my autonomy I will happily end my life”.

“If I get Alzheimers take me out the back door and shoot me”.    

To a degree, Julianna’s story is a red herring. We are not talking about one child. It is not possible nor is it advisable to pass judgment on her parents. Parents are given a wide latitude when making health care decisions for their child as they should. I for one would never put my son’s life in such a public spot light as Michelle Moon has. The same can be said for Ashley X parents who publicly support growth attenuation yet at the same time remain anonymous. The point here it’s never about the case in question. Avoid the emotion and hysteria. Think. We humans endure, adapt, and overcome. So exactly what are we people with a disability, a class of people, enduring, adapting and overcoming? In a word, ableism. We are adapting to a different body—a body that is too often deemed as nothing more than dysfunctional and defective. We are enduring class based oppression. We are overcoming a social system that is exclusive and hostile to our mere presence. Framing disability in this manner is rational and intensely unpopular. It is far easier to rely on emotion and pass judgment on others. This is why projects such as Alice Wong’s Disability Visibility Project and Dear Julianna are important. Beyond the wheelchair, beyond the imposing medical technology you will discover something essential—a human being just like yourself.  If you don’t believe me read a few virtual letters at Dear Julianna. There is nothing to fear.