More on the Murder of Courtney Liltz

Yesterday I wrote about Bonnie Liltz who was due to be sentenced in court for murdering her daughter Courtney. The prosecutors in the case recommended she receive no prison time and simply be put on four years of probation. The Judge Joel Greenblatt rejected the prosecutor recommendation and sentenced Bonnie Liltz to four years in prison. According to various news reports, Liltz, appearing to be frail,  burst into tears upon hearing the verdict. Liltz’s family was stunned. Liltz bond was revoked and she was immediately taken into custody. The Chicago Tribune and multiple local Chicago news outlets covered the sentencing. The sentencing received some national attention as well. I spent the morning reading the reaction to the sentence. Not surprisingly, the reaction was highly emotional. The dominant theme was the case is tragic. Based upon my reading, the dominant opinion was that the sentence was far too harsh. This is not surprising. Life with a disability is consistently devalued. Stigma consistently clings to disability. We people with a disability are fearful reminders of just how fragile the human body is. Symbolically, we represent the limits of medical science and technology. Our lives are inherently compromised and we are less human. How do I know this? I am reminded daily by typical others in large and small ways. Today, my reminder was a trip through the comment sections of various newspapers that covered the sentencing of Bonnie Liltz. Below is a random sampling of what I found. It reflects an ugly side of humanity I have become accustom to encountering.

This woman should receive some serious credits for all the years she took care of this young lady whose own parents apparently are not to be found.

This sentence warrants an immediate appeal. This woman is *not* a criminal!

Daughter had zero quality of life.

Wrong headed decision for sure. Judges generally go with prosecutors. This poor woman will now suffer more. Judge Greenblatt got his pound of flesh

She should just get counseling. This not your normal case. imbecile judge.

The prosecutor asks for probation and the judge gives her 4 years? Insane. Sadistic.

This judge ought to be recalled or kicked off the bench. A desperate mother in a desperate situation. Shame on the Judiciary of Illinois!

Four years in prison is uncalled for. This lady is not a threat to society and prosecutors even asked for probation. This is a judge being a big shot on a woman who is already suffering. This isn't justice.

I support euthanasia for people like Courtney who suffered on a daily basis. This was a mercy killing from her mum,

For the judge to say what she did was not an act of love is what irritates me the most.

She should have gotten probation. What she did was out of love.

Joel Greenblatt -not exactly a man of compassion. Even the prosecutors asked for only probation. Now this woman's life is ruined even more. Greenblatt from his statements thinks he is God. Greenblatt should be removed from the bench.

The above comments are disheartening. They are a reminder of what people really think when disability in the broadest sense of the term enters one’s life. Let’s be very clear: Bonnie Liltz is now a convicted murder. Yet she has received an unprescedented amount of sympathy. A large contingent of people think she should not be imprisoned at all. One commenter quoted above suggested euthanasia should be a legitimate option for people like Courtney Liltz. The quality of life Courtney had was deemed substandard. Her death while sad was in fact a blessing, an act of mercy.   Stephen Drake was quoted in the Chicago Tribune and he really hit the nail on the head with the following: “Its almost a sainthood thing. This mother took care of someone no one else would want in her home, so maybe we should go gentler on her. In order to treat a perpetrator more gently than other perpetrators, we have to devalue the victim.”Link: http://www.chicagotribune.com/suburbs/schaumburg-hoffman-estates/news/ct-mother-killed-disabled-daughter-sentence-met-20160518-story.html

Living a devalued life is something I have forcefully rejected for the last 35 years. I do not consider my life as being devalued in any way shape or form. I am content with my existence and body. I wish others perceived me as equally valuable but I know that is not the case. Where ever I go I am a problem. Likewise, caring for Courtney Liltz was a problem. She had the mentality of an infant. She required a great deal of care. She was suffering.  She could only say a single word. This is a tragic existence for mother and child. The child in this case was a 28 year old woman. The bar was set low for Courtney’s care because her quality of life was equally low. Bonnie Liltz was praised for taking immaculate care of her daughter. All news outlets stated Courtney was kept clean. She was well fed.  She was in good physical condition. Mother and daughter slept in beds a few feet apart.  But wait there is more. Bonnie Liltz socialized with other people and included her daughter. She took her for walks. Her house was spotlessly clean. This makes no sense when compared to a typical parent raising a typical child. The implications here are obvious to me.  Apparently they were obvious to Judge Greenblatt as well.  In sentencing Bonnie Liltz he stated:

Life is precious. Even a life that is disabled. Even a life that is profoundly disabled. Your daughter, Courtney Liltz, was innocent and vulnerable and fragile. Her life was fragile. All life is fragile. The choice you made was not an act of love. It was a crime.

Murder is murder. All the emotion in the world should not obscure this fact but obscure it is when disability is present. Bonnie Liltz broke down in tears upon being sentenced. Her family and lawyer were shocked.  I may sound cold hearted but Bonnie Liltz did the unthinkable: she committed murder. Stephen Drake noted “we put high penalties on murder because we send a message that we value life”. According to the Bureau of Justice Statistics, the mean prison sentence for murder and non-negligent  manslaughter was nearly 20 years and 8 months; the median was 24 years and 3 months. I am no legal scholar but Bonnie Liltz got a very light sentence. She could have been sentenced as charged and convicted to 14 years in prison.  In theory Liltz could take back her guilty plea. She could then go to trial for first degree murder but this carries great risk in the form of a 20 year mandatory minimum sentence. For now, Liltz defense lawyer will file a motion seeking reconsideration of the sentence. 

I am deeply bothered by the way in which this case has been framed and the overwhelming support Bonnie Liltz has received. This case reminded me of a memoir I tried to read that has gotten uniformly high praise--High Blue Air by Lu Spinney. The book details the aftermath of Spinney's son who experienced a severe traumatic brain injury in a snow boarding accident when he was 29 years old. For more than 5 years she and her family cared for her son. She detailed his recovery and what it was like to care for someone in a minimally conscious state.  At some point, Spinney came to conclude her son's life was one long experience of unbearable suffering. She wrote:

I thought, how can he want to continue? His life was day-long, night-long torture. But I assumed there was nothing we could do except to continue doing everything we could to make his existence more comfortable. The most painful thing was imagining him, in his moments of awareness, feeling so profoundly lonely, unable to communicate, totally dependent on other people for every single aspect of his life. He was a ghost of himself.

I don't have the heart to recount the rest of this memoir. Suffice it to say, Spinney concluded the only "gift" I could give him was death. Death as a gift? A parent frames the death of their child as a gift? Between the murder and of Courtney Liltz and this memoir we are in unchartered waters. What happened to Dylan Thomas famous poem "Do not go gentle into that goodnight"? What happened to placing value on all human life? I understand broad based advances in medical technology have created unimaginable ethical conundrums and end of life care is exceedingly complex but where is our humanity. We live in a world in which a parent considers death is a gift to be bestowed upon her son. A world where a parent murders their child with a severe disability and is shocked she gets sent to prison. This is so wrong my heart breaks. 

Murder is Murder: Misleading Spin

On May 27, 2015 Bonnie Liltz murdered her 28 year old daughter Courtney at their home 30 miles outside of Chicago.  Bonnie Liltz survived the murder suicide attempt. Her daughter, Courtney, died a week later. Bonnie Liltz has received a great deal of sympathy. Her lawyer reports she has gotten letters of support from all over the country. Prosecutors and Liltz defense attorney, Thomas Glasgow, agreed that jail time is not going to be suggested. Initially charged with first degree murder in the death of her daughter last week Liltz pleaded guilty in Cook County Court to the lesser charge of involuntary manslaughter. Prosecutors have recommended that she receive four years probation and mental health treatment. It is possible the judge could send Liltz to prison for 14 years however this is not expected to happen.

What have I left out of the above story? Sympathy for a murderer? No prison time for a mother who murdered her own daughter? How is this possible? More astounding, cases like Liltz though uncommon are not exactly rare. The variable left out is disability--severe disability. Bonnie Liltz adopted her daughter at the age of 5. She knew Courtney had cerebral palsy and profound cognitive deficits from damaging seizures when she was two years old. Courtney could speak only one word: "Momma". Over the last year all news accounts have been extremely sympathetic to Bonnie Liltz. There is no need for me to provide links. The sympathy is universal. News accounts have been dominated by raw emotion. Bonnie Liltz is described as a uterine cancer survivor. Diagnosed at 19 years old her body was ravaged by radiation therapy and her survival came at great cost--she could not conceive herself. Hence she adopted Courtney and boundlessly loved her. She cared for Courtney and attended to all her needs 24 hours a day for two decades. They shared the same room and their beds were mere feet apart. Her friends and family told the judge Bonnie was devoted to Courtney--she was in fact her life. A friend stated "Courtney was always clean, neat and nourished". When Bonnie Liltz pleaded guilty the court room was filled with supporters. As for Liltz herself she stated in court "I would like nothing more than to turn the clock back and have the ability to care for her again. I have pain inside that is beyond words". According to court transcripts, Liltz recalls waking up in severe pain and "soiling myself and my bed. My heart was pounding and I was shaking and sweating profusely. She had just been given a grim prognosis from a physician and was convinced she was dying. She wrote a hastily written suicide note and added a lethal amount of prescription drugs into her daughter's feeding tube. She then drank what she thought was a lethal cocktail of drugs in a glass of wine and expected to die. In the suicide note she wrote "I am so sorry to put you all through this but I can't leave my daughter behind. She is my life."

No doubt this is a tragic story. Suicide is the tenth leading cause of death in the United States. As a father, murder suicide is unimaginable. But murder suicide is not unimaginable for all parents. Lilts'z concerns are in fact common among those parents that care for a severely disabled child their entire lives. Curt Decker of the Disability Rights Network hears this from parents who care for their severely disabled children. They know all too well that eventually they will be physically unable to care for their children. They know their children will out live them. They are justily terrified and their worries are universal--who will care for my severely disabled child after I die. This population of people, severely disabled and their parents who do care 24 hours a day, are nearly invisible. The social supports are grossly lacking. Bonnie Liltz had good reason to be fearful for her daughter's future care. In 2012 Liltz had surgery and had to put Courtney in a nursing home for a week. Courtney did not understand why her mother was not present. Upon her return home Bonnie Liltz knew her daughter was upset and not herself. Bonnie Liltz was appalled by the substandard care her daughter received in the nursing home. According to court transcripts, Liltz maintained she was neglected. Liltz said Courtney was "covered in drool, her clothes were wet, and she was sitting in her own filth in a corner. It was with that memory that I felt the only place I knew she would be safe and happy would be in heaven with me".

I understand the emotion. Any successful or failed murder suicide  is tragic. But lost in the emotion and support for Bonnie Liltz is a massive social failure. Parents of children with severe disabilities are terrified of what will happen to their children when they die. Think about this. Think of what this fear implies. Think of the injustice. Think of the substandard care. We are talking about the most vulnerable humans. How can we as an advanced civilization let this happen. For me the tragedy is that those parents who care for severely disabled children have a very real and legitimate concern. If I were in their situation I would be just as worried.

Compounding parents fears is the fact Bonnie Liltz is getting a great deal of sympathy. As many disability rights experts have noted, the implications for the sympathetic treatment Liltz has received is troubling. Did Courtney's life have less value? The lenient treatment surely indicates this. Murder is murder is it not? There is no doubt this case involved premeditation. Legal experts in Chicago seem to agree probation is an appropriate sentence. Jeffrey Urdangen, director of the Center for Criminal Defense at Northwestern University Pritzker School of Law believed the sentence recommendation was "not so much about sympathy but the prosecutor decided there was sufficient mitigating evidence. This is an exceptional case. Sending a woman who's got a critical illness to prison for an act for what some could interpret as mercy... There are so many facts that lessen her culpability"

These words terrify me. Is killing a severely disabled child an act of mercy? Is killing a person with what is perceived as being a severe disability mercy? The facts in this case are couched in kind words. Let me cut to the chase: Coutney Liltz's life was not valued. Life with a severe disability, especially a severe cognitive disability, is not valued. Such an existence is not valued and deemed less. Life with a disability is inherently inferior. Where does this line of logic end? Where does one draw the line? Are we going to try and eliminate all people with a disability as Hugh Herr of MIT is trying to do? Perhaps we just end the life of those with a severe disability? If so, how do we define and identify what is and is not a severe disability. If a person experiences a spinal cord injury at what level of injury is life not worth living. How about those that experience a traumatic brain injury? Are the lives of those in a minimally conscious state worth living? What about those with dementia? At what point is the quality of life so limited we can  end their lives?

The public health care implications are significant. According to Glenn Fujiura, professor in the Department of Disability and Human Development at the University of Illinois at Chicago, 80% of adults with significant development disabilities live at home with aging parents. Liltz is in fact not an isolated case but a harbinger of future cases. Fujiura notes the Liltz case is a prime example of a larger broken system. I predict without substantial social change cases such as Bonnie Liltz will become increasingly common. This grim thought is obscured by the mainstream media that focuses not on the larger broken system of inadequate social supports for the most vulnerable but rather on the diminished value we place on the lives of those who live with severe disabilities. Bonnie Liltz needed robust social support not sympathy. She valued the life of her severely disabled daughter Courtney. The fact our society did not provide adequate social supports for Courtney Liltz is the real tragedy. A 28 year old woman died needlessly. A mother felt her only option was to murder her daughter and commit suicide. This is the tragedy. Worse, more deaths will follow unless we pay attention to the very real social injustice that took place.

Ignorance Can Hurt

I did my least favorite chore yesterday. I went to the local laundromat. Those that read my blog posts on a regular basis know I have had many inappropriate social encounters while doing something as mundane as laundry. When compared to the past, what took place yesterday was a minor incident. I choose to do laundry at odd times. Who does their wash on Tuesday afternoon? I hoped no one. I was wrong. A few students from the local college were doing their wash. I never have issues with the college kids--they are glued to their cell phones or lap tops. The people I watch out for are men and women my age and older. This a generalization but I remain wary at all times. I literally never know what people will say to me. Well one man was watching me from afar and I thought he was going to check his dryer when he suddenly veered my way and said "I did not know you people could do laundry. You are amazing." I was not impressed. I did not reply. I intensely focused  on folding my clothes and scrupulously avoided any eye contact. The man pressed on: "You are inspiring. Really, I could never live in a wheelchair. I am going to tell all my friends about you". I look up and cannot hide my distaste. The man says "What? Why the look?". I reply "Think about what you are saying". Utterly immune he does not yield: "You are amazing." We have already established that I am amazing I want to reply but based on previous experience being a wise ass is counter productive. Then the light bulb goes off in the man's head: "You got here by car! You can drive! Wow, I am going home and will tell everyone about you".

This social exchange and thousands like it are a part of my life. They are part of my life 25 years after the Americans with Disability Act. They are part of my life after 40 years of progressive legislation designed to protect the civil rights of all people with disabilities. The glacial nature of such demeaning comments has worn me down. When I was young and full of piss and vinegar I might have told this man to fuck off. I rarely if ever do that because being confrontational does not work. Being confrontational has a boomerang affect. Instead of highlighting the fact this man is an ableist any anger on my part or snarky reply makes me look bad. I am instantly the problem. A sweet and innocent comment and high praise prompts anger? Wow, that stereotype of the bitter cripple who is mad at the world gets reinforced. Bipedal others know all. I am angry because I cannot walk. Using a wheelchair is bad. My life is hard. The ordinary is impossible. I am the plucky cripple who gamely moves on with life. My life sucks don't you know. How do I explain to an utter stranger that my life is quite good. I teach honors students at Syracuse University and have the respect of students and faculty members alike. How do I explain inspiration porn that has been imposed on me is deeply objectionable? How do I explain the long history of disability based oppression? How do I explain all this to a man in the local laundromat and do so in no more than a minute? Simply put, it is impossible and a classic Catch 22 situation.

I have had far more negative social interactions than the one described above. I don't know why but this social exchange rattled me. The rattle here is a deep rooted sadness. I have been paralyzed since I was 18  years old and have spent my entire adult life as a paralyzed man trying to make others see me as something more than a tragedy. I am a human being. I make a conscious effort to not hurt others. I do my best to be kind. I take great pride in teaching young men and women who are starting their adult lives by attending college. I was having a good day and this exchange ended it. I was once again reminded my existence is less. Indeed, my existence is so miserable being able to do laundry and drive a car is an accomplishment. The bar for people with a disability cannot be set any lower.  I returned home sad. I remained sad for many hours. I wondered why these sort of interactions are commonplace. The rational part of my mind could easily explain the sordid and depressing history associated with disability based bias. I know about the cultural implications of the ugly laws, forced and coerced institutionalization, segregated mass transportation, the exclusion of children with a disability from public schools until the mid 1970s, the lack of accessible housing, high unemployment rates associated with disability, poverty etc. I teach this to my students. The bottom line is that I am a human being and I was hurt. In contrast, the man I encountered was happy. He was going to call his friends and tell them about me. I assume they too will be inspired by my ability to do laundry and drive a car. If this is the case it will take generations before we people with a disability are truly equal. I often think about the progress of other groups discriminated against. Black people do not live in a post racial America. Women still experience gender based discrimination on a daily basis. Donald Trump wants to build a wall between America and Mexico to keep out rapists and illegal immigrants.

Occasionally I am asked, "Come on Bill, progress has been made. It wouldn't kill you to point out the positive developments". I cannot deny progress has been made. I cannot deny the law is firmly on the side of disability rights. All this is true. But educating people one by one in a country of over 300 million people is not an efficient means of educating the general public and that is what I am forced to do on a daily basis. I must be socially astute and polite in the face of ignorance. I change my schedule and routine to avoid people like the man encountered. I am regularly put in a position in which I must explain my existence has value. I do this and much more as a means of self protection. I am forever on guard and wary of others. This takes a mental toll large and small. The butchers bill yesterday was sadness. I shook it off as I always do before I went to sleep. Today is a good day, its sunny and warm (that does not happen often in Syracuse). My beloved lab Kate and I went for a pre dawn walk. I am going to campus to meet a foreign scholar who is young, smart, ambitious, and eager to learn. I am hopeful. I need to believe in goodness. I find belief in many places. Tonight I am going to Grey Rock Farm, a local CSA, for dinner. I love the sounds and smells of small working farms that abound in Central New York. Farms make me feel grounded. It reminds me of what a gift life is and that we humans are but a small cog in the cycle of life. Part of that proverbial cog is disability and bodily differences. Human variation is good and a vital part of evolution. I just wish others saw what I do when disability is present. I see the best of humanity and infinite possibilities.

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.

Ableism and Organ Donation: A Deadly Combination

In 1996 Californian Sandra Jensen, age 34, received a heart lung transplant. Jensen had Down Syndrome and was originally informed that heart lung transplants were not performed on any individual who had Down Syndrome. In fact no person with Down Syndrome had ever received such a transplant. Jensen's case drew national attention and a heated debate took place over who was and was not eligible for organ transplant. After a public and heated battle, Jensen did receive a heart lung transplant. This has been a recurring theme in hospitals nationwide.

Seventeen years after the Jensen case, in 2013 Amelia Rivera was denied a kidney transplant. According to her parents, their daughter was denied a transplant because she had a cognitive disability (Wolfhirschorn).  Jensen and Rivera cases are unusual in that they garnered nationwide interest. Most such stories about disability based discrimination with regard to organ transplantation go unreported. These two cases demonstrate the dark underbelly of ingrained social and medical abuse of those with a cognitive and physical disability. Simply put, health care institutions do not value the lives of those who live with profound cognitive and physical  disabilities. Study after study has demonstrated that people with a disability have significant trouble accessing health care. People with a disability, especially women with a disability, receive substandard care. Thus it comes as no surprise that when people with any sort of disability seek complex medical care on the cutting edge of modern science our presence is unwanted if not forcefully rejected.

I vividly recall the Rivera case. I shook my head in wonder. How could yet another story of organ transplant denial based on disability occur at a prestigious hospital?  What I remember the most  though was an essay written by Art Caplan who is the go to bioethicist for the press in the nation: "Serious Issues in Disabled Girl Transplant". I cannot find the link but I did preserve the following quote:

Whether the kidney comes from a cadaver donor or a living one, transplant teams always think about a set of medical facts in deciding whether to transplant anyone. Is the person able to go on kidney dialysis? Is she healthy enough to survive surgery? Does the patient have a donor who closely matches her blood and tissue type increasing the chance that the transplant will work? There is nothing special about the presence or absence of mental disability with respect to these questions. But morally, things get a little stickier."

I blanched when I read the proverbial but: "But morally, things get a little stickier". Things have been sticky for decades. Are the civil and human rights of those with a disability merely sticky problems? I think not. The word that comes to mind is ableism. In some cases ableism is lethal. All people know those that need an organ transplantation do not get such life saving surgery. The demand is greater than the organs available. People die waiting for organ transplants. While I have no doubt ethics committees and organ donation teams do their level best making ethical choices I believe deeply ingrained disability based bias remains a significant and unacknowledged problem. Without question, the best written statement on the ethical issues involved in organ donation and disability based bias was produced by ASAN. Link: http://aadmd.org/sites/default/files/D2%2012%20Ne'eman.pdf This statement is a grim read and cannot be chalked up to being sticky. Children and adults with disabilities do not appear on organ transplantation lists for good reason-- unarticulated bias is rampant. Simply put, the lives of people with a disability, especially those with a significant cognitive disability are not valued. If this is in doubt, I suggest people read the comment section on the latest case of a child with a disability being denied an organ transplant. Here I refer to Lilly Parra, a four month old infant who needs a transplant. According to various media outlets, Lilly was removed from the transplant list The transplant team told Lilly's mother she was not eligible for a transplant because she had diffuse cerebral dysfunction and might be developmentally disabled. In a letter from the transplant team at Loma Linda University Children's Hospital to Lilly's mother they wrote: "The Cardiology team performed an initial screening for suitability for heart transplant evaluation and determined that Priscilla was not a candidate for evaluation because of chromosomal abnormalities affecting longevity." In other words, people with Down Syndrome, Turner Syndrome, Jacobsen Syndrome, Wolf-Hirschhorn Syndrome  etc. are not eligible for an organ transplant.

In the Washington Post Timothy Shriver weighed in with his support for Lilly. In an opinion piece, "The Discriminatory Reason Doctors Won't Give a Baby the Heart She Needs," Shriver raised many of the points others have made who rail against disability based bias and organ donation. Link: https://www.washingtonpost.com/opinions/this-is-the-reason-doctors-wont-give-a-baby-the-heart-she-needs/2016/04/08/d766816c-fcea-11e5-886f-a037dba38301_story.html What I fear are the cases we hear nothing about. How many lives have been lost that are not reported in the press? Equally worrisome are the comments made by readers. Some comments are shocking. Below is a random sampling of nine comments that stuck out to me as representative of the long comment thread.

1. I went to the parents' change.org site. There is a photograph of the child, Lily.  
I see a child who is alive due to advanced medical support. Intubated. Eyes closed, not engaging with her environment. Her facial features are swollen, likely due to corticosteroids. A paucity of movement. This is not a child who is able to feed at its mothers' breast or hold its head upright. I am a physical therapist by profession and work with medically fragile children.  
 This child is existing. She is not fully living - a mere four months old and yet has already endured so much pain. I wonder if it would not be kinder to discontinue advanced life support and let nature take its course. I would not want my child to suffer as is this child.

2. Seriously, this is probably a very sensible decision. Given that there is a waiting list, I surmise that there are many infants waiting and that there are relatively few transplants available. Any reasonable allocation of resources would prioritize those with the greatest chance to have a normal, healthy life. It may be cutthroat, but it's probably the right thing to do. 

3. I could accept Mr. Shriver's argument if doctors could just go down to Organ Depot and pick up whatever organs might be needed by their patients. Unfortunately, that is not the case, and those organs that become available must be apportioned out in some way. This is a tragic situation, but the bottom line is that Lily's parents have made choices that they expect others to pay for in time, money, and in this case, a transplantable organ. 

4. Because of the extremely limited availability of organs, every transplant involves "discrimination." The follow-up story should be about the baby who received the heart this baby was denied. This poor infant's four month's of life have included one painful medical procedure after another. (And don't kid yourself. Fragile infants can only be given very limited pain-killer.) I wouldn't put a dog through what this baby has endured.

5. The sad reality is there is a limited supply of hearts to transplant. Using one on this child means that another child dies. Cold, hard decisions need to be made.

6. A hard but sound decision. Nobody said medical ethics was easy.  

7.  If this baby is destined to live a debilitated short life and then die, why should we pay for this effort?

8. You can't fix someone's chromosomes with a new heart.

9. Not only is this infant suffering pain, which she is too young to talk about, but she is incurring great medical expenses that the rest of us are paying for.

Several themes can be identified that are objectionable. Here is a short list.

A "normal" baby's life is more valuable than a child with complex medical needs. 

Death is preferable to a life of pain and suffering. The pain and suffering are an inevitable part of  life with a disability.

A heart is a rare commodity that should not be wasted on a child that might have a disability.

A willingness to predict the future life of an infant with a significant disability as being compromised and limited.

The forceful rejection that health care is a human right.

The assumption that life with a disability is inherently inferior.

I should have had the common sense not to delve into the comment section at the Washington Post. I did so because I know ableism has the potential to be lethal. In this latest case of organ transplantation denial for an infant with a disability it seems likely Lilly will die. This death is no doubt sad but hell, someone has to make a hard decision. I find this unacceptable. This supposedly hard decision is important because it firmly demonstrates how we value some people more than others. This valuation system has been and remains potentially lethal to people with a disability. Organ transplant teams are essentially gatekeepers. They get to decide who lives and who dies. An unenviable task--one that is obviously not free of disability based bias. If such bias did not exist I would not be writing about yet another person denied a life saving procedure because they had a disability.

Spring Has My Bones Aching

I have been experiencing a philosophical throbbing ache in the marrow of my bones in recent weeks. The ache is painful. The ache is surely not depression that has gripped me off and on in recent years. This ache is different. It is a low level ache akin to a non essential app on a cell phone that drains the battery. I am in the words of James Taylor classic song "Running on Empty." I am running on empty because I live in an ableist world. Ableists abound. Bipedal people sure do love their feel good stories. Unbeknownst to the vast majority of people who insist  on "helping" me is that ableism is the bane of my existence. Ableists can see only one thing--what I cannot do. I am not truly human but a living breathing stereotype of a life gone horribly wrong. My existence is tragic. Oh my, you are paralyzed--I am ever so sorry. "What can I do to help you?" I never reply with what I am actually thinking. When I hear "how can I help you" uttered by a stranger my first thought is "fuck off asshole". Of course I never say this to the well meaning person who is ever so eager to help me. I do not say "fuck off" because I do not want to be physically or verbally assaulted. I don't want my wheelchair ripped out of my hands as I put it inside my car. I do not want to have a door slammed in face.  In the words of Stephen Kuusisto:

The ableist isn't in the mood to hear you. He's tired of your complaining. He was trying to do something good for your kind. He was reminding TV reviewers that we have to save the poor cripples. The ableist doesn't want you to mess up his story with the facts. He remembers the good old days when the lights would dim in America's theaters and there'd be an advertisement for the March of Dimes and there were poster children and the collection of cans came around the audience row by row. 

To repeat: the ableist isn't in the mood to hear you. Ableists do not listen. They never have. Ableists did not listen to Ed Roberts when he spoke about cripple power. Ableists did not listen to Paul Longmore when he burned his book. Ableists did not listen to Mary Johnson when she critiqued Clint Eastwood and Christopher Reeve. Ableists will surely not be reading these words. Ableists do not listen because they have no interest in the lives of those who have a disability. When we cripples speak the truth, when we cripples push back it destroys the well worn stereotypes associated with disability. We cripples want what typical people want--a safe and accessible place to live, a job, and access to mass transportation so we can get to work and navigate the world. This is too much. The ableist who runs across the street to help me is in fact the enemy.  This hearty soul is a good person and provider. This ableist might be a member of the church and goes to mass every Sunday. The ableist might be a pillar of the community. The ableist could be the mayor of a small town. Few if any ableists wake up in the morning and think I will discriminate against the handicapped today. Ableism, like the ache in my bones, is far more subtle.  The ableist wants to kill me out of the goodness of their collective souls. Try and access health care and one will receive a litany of apologies. Sorry the examination table is not accessible. Sorry we have no accessible patient rooms. Sorry we cannot lift you onto the Xray table. Sorry the accessible entrance is locked. Sorry I have no idea where an accessible lab is so you can complete blood work. Sorry during the procedure your wheelchair must be left in the hallway unattended. My you have suffered so much in your life perhaps you might consider foregoing life sustaining antibiotic treatment. The ableist loves me. The ableist does not want me to suffer.

In many ways I am the model of success in the estimation of ableists. I was paralyzed, worked hard to be "rehabilitated",  and have over achieved. I have "overcome" my disability in spectacular fashion with my Ivy League PhD and series of academic jobs. I have shamed all those with a disability that are lazy slackers. I am one of them--typical in every way except one--I am paralyzed. However, I become a problem again when I open my mouth. Ableists do not like what I have to say. Oh the ableist will cluck about and think disability pride is cool. The ableist will reach into his pocket and give a donation to some kick starter fund or a adaptive sport program. Trouble arises when I start speaking about the gain associated with disability. You see my value system is radically different. I see the folly of our beloved myths about autonomy and self determination. In the words of Paul Longmore:

deaf and disabled people have been uncovering or formulating sets of alternative values derived from within the Deaf and disabled experiences... these have been collective rather than personal efforts. They involve not so much the statement of personal philosophies of life as the assertion of group perspectives and values. This is a process of Deaf cultural elaboration and of disabled culture building. For example, some people with physical disabilities have been affirming the validity of values drawn from their own experience. Those values are markedly different from, and even opposed to, non disabled majority values. They declare that they pride not self-sufficiency but self-determination, not independence but interdependence, not physical autonomy but human community. This values formation takes disability as the starting point. It uses the disability experience as the source of values and norms. 

In short, Longmore asserts that a cultural divide exists between those with and without a disability. To me the tragedy is those without a disability either refuse to acknowledge this or reject the idea entirely. The more strident one becomes the easier it is to dismiss the scholar or writer with a disability as unbalanced, a person that embraces a screed, is illogical and driven by emotion. Thus my words fall on deaf ears (pun intended) and are quickly dismissed. In contrast, those with a disability that conform to existing stereotypes associated with disability are beloved. The best and most controversial figure in this regard would be Christopher Reeve. His 1996 speech at the Democratic National Convention moved those in attendance to tears. All news outlets gushed about Reeve's speech as one of the finest statements about the human spirit. While Reeve was being lauded, Harriett Mcbride Johnson was on the convention hall worried about her personal safety and horrified by the reaction to Reeve's speech. In her memoir, Too Late to Die Young, she brilliantly describes what took place and wrote Reeve was akin to a ventriloquists dummy. Those that remember the convention recall just one thing--Reeve's prime time made for TV speech. Justin Dart, a well connected and life-long Republican who held high office during the Reagan era, spoke the next day about the disability rights and the ADA . Dart spoke in the middle of the afternoon and precious few paid any attention.

In recent years the only person with a disability that has had widely acknowledged success conveying a disability rights perspective was Stella Young. In 2014 Young gave a TED Talk "I'm Not Your Inspiration, Thank You very much". Her talk was good but it did not resonate for me. Young was a comedian and journalist. Through humor she did a wonderful job of undermining inspiration porn and stereotypes associated with disability. I am much rougher around the edges. I speak my mind and sometimes do so with force. I am also a story teller as are most academics. It is my hope that if enough of we people with a disability tell our stories the hordes of bipedal that surround us will listen some day. I know we people with a disability have come a long way. No longer are we forced into institutions where our lives were carefully hidden away. That was a giant leap forward. We have also forced people to think about the social versus medical model of disability. Yet much work remains to be done. Disability rights and civil rights are somehow perceived to be different. The ADA is widely disparaged and is often deemed an unfunded Federal mandate. In response to ingrained disability based bias that stubbornly remains ever present is perhaps the reason my bones ache. Please help me make the ableists go away. I do not want to be lonely any longer. I need you. I need my people. I need a community. Bipeds or typical others need not apply.