Understanding the right to die from a disabled person’s perspective

The following dialogue took place over several weeks between FEN’s blog editor/moderator and a disabled person I will call Jane to protect her identity.  She feels that some anonymity is necessary to prevent the trolling and harassment she has experienced over the years as a disabled person.

Lamar:  Tell us about your disabled condition and some of the problems you have had.

Jane:  I am an L1/T12 paraplegic, injured at the age of four by a drunk driver. Children are amazing in their adaptability and it wasn’t until about the age of eight when gross physical abuse became a regular part of my life that I began to wish for death, or what I often refer to as “going home.”   I weigh 80 lbs., use a wheelchair, and sometimes ride on a recumbent bike that I can pedal with my arms.

I attended boarding school, majoring in writing. At that time I ambulated on HFO’s (hip-to-foot orthotics) and metal crutches, a cruelty that is no longer forced on or medically recommended for people with my level of injury. The resulting pain and autonomic dysreflexia that is now diagnosable and understood by doctors who treat the spinal cord injured was a daily threat to my life, and caused extraordinary discomfort. I was forced to ambulate in this fashion from the age of 5 to 21, when I was made aware that medical thinking had changed and my health was in grave danger. The assertion when I was injured in the 70’s was “stand at all cost.” Gratefully progress has been made. Much of what passed for therapeutic treatment was merely barbaric experimentation. The muscle stimulators and TENS units used today are useful for many and do not deliver the voltage of the Scolotron that I was forced to wear at night for over a year. It had no positive effect on my condition. It’s been all but wiped from the medical records. It was simply grotesque torture of an eight year old child that was already being physically and financially abused by immediate family members.

I did very much enjoy the relief of boarding school, since familial abuse was no longer possible, and I was among like-minded students and world class instructors. Many of my classes were more challenging than my college courses. 

I attended a small liberal arts college to continue my education. During college, survival became challenging as medical complications arose, help was not provided, and I never completed my studies to graduation. I did enjoy the benefits of the new ADA laws that at least encouraged my school to move my classes to accessible buildings. I was told to expect a short life, and accumulated enough credits to graduate, but not in a single area of concentration. It was a true liberal arts education of classes of my choosing in literature, political science, business, and art. I held no hope of ever developing a career and dedicated myself to activism.

Lamar:  Have there been other physical challenges related to your health?

Jane:   I receive all my care now at a large medical institution due to the great complexity of my case. Even the best doctors are astounded at my survival. I apparently won a genetic lottery, and have excellent “stoppers” below my kidneys that discourage back-flow of urine, preventing the necrosis that kills most people with my level of injury.

Several years ago my health was further complicated by losing my bladder to cancer related to decades of intermittent catheter use. My recovery from the continence diversion surgery I was fortunate to be eligible for was by far the most challenging recovery I’ve ever faced, involving years of sleeplessness as I had to attend to my pouch every two hours, both day and night. My surgeons deftly created a new internal organ fashioned from my own body parts in a single 12 hour surgery, very delicate at first, that required years of attentive care to heal completely, stretch to a useful size, and find its place in my body. I obviously did not come out of this long surgery the way I went in, which was expected but still very difficult to deal with. I begged for relief from my situation. I was unfortunately introduced to a very accommodating social worker partnered with a home care group that specializes in dramatically overmedicating disabled and elderly patients, ostensibly to keep them quiet, comfortable, compliant. The result was a series of heart attacks, type 2 myocardial infarction, the most terrifying events of my life. I no longer hold the misconception that a heart attack is a peaceful death. No help was available for me at the local hospital as a distraught nurse looked at my continence diversion and screamed, “We don’t do that here! We can’t touch you!” Touch me they did. Rather than send me on to competent care, I was mistreated for three days while my life was further endangered by a chemical cardiac stress test. 

I clutched my HandyCam and begged for help, the only reason I believe I survived this hospitalization. A chemical cardiac stress test is a completely inappropriate and very dangerous procedure to perform on a paraplegic. It was not the first time I was injured by ignorance of how to appropriately treat the disabled, but I have gone to every effort to ensure it was the last time I receive mistreatment at the treating hospital, a hospital known for gross mismanagement and ill treatment of the able bodied as well.

My cousin provided a powerful patient advocate at that time who was the spearhead for a battalion of attorneys. My insurance company was finally brought to heel. The only place I can safely receive medical care is 5 hours away, but well worth the travel. Unchecked autonomic dysreflexia, which caused the heart events, is now under control, as is my PTSD and depression. This obviously presents issues in the event of an emergency, which I’ve prepared for as well as possible with a DNR and the help of my physicians and a civil rights and a nationally respected medical ethics attorney.

Lamar:  What did you do after leaving college?

Jane:  Several years after college, due to drug and alcohol abuse, I found myself homeless in a city in New England, where I had fled my family. There I received a very different education about life and the struggles of real people very different from those I encountered in my life of privilege in the Midwest. I was determined to find out what was really going on in the world around me, and found my answers. I became pregnant and many months prior to his birth arranged an open adoption for my son, who is an adult today, healthy, and prospering. His father died three months following his birth.

I eventually migrated back to sobriety, with much assistance and residential treatment, and returned to the relative safety of family in the Midwest, where my parents retired. I have been free of hard drugs for 20 years, and free of alcohol for 10 years. I worked with NORML in Michigan to establish medical and recreational cannabis laws, was grateful for access during times of medical crisis, but thankfully am no longer dependent and indulge infrequently. I make no judgement of my friends, but simply no longer require it as a palliative treatment.

Lamar:  You mention you had experienced abuse.  Can you tell us more about some of the abuse you have experienced?

Jane:  I have suffered every abuse physical, emotional, financial, and medical imaginable, starting with my own mother and father. I can’t leave my home without being disturbed by a registered sex offender or predator. It’s taken many years to form functional boundaries for my safety, which included installing cameras in my home after the second assault by a caregiver. This at least provides a place of peace and comfort for me in my home, though it took five years before my parents even attempted to visit, fearing being observed interacting with me in the fashion they’d become accustomed. We’ve negotiated a delicate truce.

I’ve received so much predation and hate online, one successful hack among many attempts, due to my involvement with activist groups (namely NORML) that I no longer use my computer and recently even shut down my Facebook account. I don’t want my page up in perpetuity for people to use as they wish or post hateful comments.

At this point, I obviously don’t need to deal with more predators who see a pretty face on a broken 80 lb body and get turned on by the fact that I can’t get away, or angry disabled SJWs [social justice warriors] with nothing to do but terrorize me remotely. I thought at one point that telling my story might help the disabled community but it seems it only inspired more people to harm me. If my mother and father get away with it after all what’s to stop anyone else? One predator even justified his actions by telling me he wasn’t doing anything my father didn’t do.

There is no end to the predation I’ve experienced. I have met the best of people who simply cannot believe the extent to which disabled people are abused physically, emotionally, medically, financially, and sexually. It’s so abhorrent to good people, they cannot comprehend the fight required on the part of the disabled to simply survive in peace. When I’ve pleaded with medical providers for assistance in my exit goals, I have never cited this abuse as a reason for wishing to die. Why would a disabled person, whose claims of abuse go so often unbelieved, unanswered, ever cite this as a reason for wishing to leave this world? Even in a deeply depressed state, human beings are willful and manipulative creatures. My condition as a paraplegic is so much more relatable to the able bodied as a reason to seek death, it would never have even occurred to me to say I want to die because I can no longer deal with PTSD or abuse.

Lamar:  What caused you to join the Final Exit Network?

Jane:  Like most people who join FEN, I imagine, I now have to face the decision to end my life as peacefully as possible, alone except for a FEN volunteer. I’ve never received anything but the cruelest forms of abuse from my immediate family and as my body was slowly chiseled away friends were also lost. I have no one, and am forced to interact with my abusers regularly to keep a roof over my head. The cameras in my home are my only protection against physical violence. The few friendly acquaintances I have say similar circumstances would drive them insane, and there are definitely days when PTSD makes that feel true.

I have what I need for a successful exit. The disabled are treated like trash in this country, and having a president who openly mocks the disabled hasn’t helped the situation. People who would have kept ugly comments to themselves or ugly acts (like turning a garden hose on me to get me off the sidewalk) now feel empowered. Local law enforcement told me after I was threatened that being mean to me wasn’t against the law. As we’ve discussed it’s also well within the law for my insurance company to do me as much harm and injustice as possible, short of directly killing me, and I have not only private insurance but also Medicare and Medicaid, parts A-Z… every safety net available.

I have a fairly rock-solid plan in place waiting for me to decide when my fight is over. I live with a great deal of physical pain and spend much of my day prone on a heating pad for relief. Derek Humphry’s book was instrumental in helping me develop my plan and gain some peace in my life. Knowing I do not have to wait for a physician or hospice worker to decide my fate is an enormous comfort. While I do wish for a soft-lit, “Me Before You” Dignitas departure with compassionate physicians, I am also painfully aware that we do not live in Europe. Were the option available to them, my insurer would surely send me a one way ticket to a dirt nap. This assumption is not based on paranoia. My insurer has eagerly and aggressively offered options they’re well aware would hasten my death, options in complete contradiction to my doctors’ orders and recommendations. My own ferocious advocacy for humane treatment and obviously the costly and necessary help from others is the only reason I’m still alive. While I’ve sought relief during times of despair and crisis, I have no desire to allow my claims adjuster to be the agent of my death.

I found out yesterday that I’m looking at a major surgery this year, nothing as major as the continence diversion, but I so hoped I’d seen my last.  I was robbed many years ago of my sexual identity by the continence diversion and now if I live to follow through with this surgery there will be little left of what once made me, me. What frightens me even more is the risk of damage to the continence diversion I fought for years to heal properly.  Going through this additional surgery only clarifies for me the need to have a resource like FEN available.

Lamar:  How do you view the plight of the disabled in this country today?

Jane:  I wish for a more fair and compassionate country. I wish for a country where my fellow disabled with the best of insurance are not left to die of simple infection when all they desperately want is the right to live, and a country that does not leave the suffering to linger in hopeless pain and agony. This is obviously a topic I’ll be dedicating much thought to. Where is the balance to be found, what could possibly be put in place to check the power of predatory insurers? I do not know. While their profits increase exponentially beyond reason, people scratch their heads and wonder why they hold such inappropriate power over medical providers.

We’re all familiar with the cases in Western states where needed treatment was denied for able-bodied patients, while assisted departure was approved. Thankfully, these cases received admonishing attention in the press. The case of Tomas Young (Body of War), however, was largely ignored. His pleas for compassionate treatment for disabled veterans were denied and his death mostly unnoticed. Disabled lives should also matter, and until they do we will not be safe with or without DWD.

My dear friend, Professor Bill Peace, blogged as Bad Cripple. Bill was a force of nature, a vocal advocate for the disabled, murdered last year by his first-class insurance company who refused the basic care he needed to resolve pressure sores that caused sepsis, from which he died. The pain of this loss is still fresh for me. It’s very easy to find his numerous blog posts. They reveal a great intelligence.  Until the disabled are provided the treatment all human beings deserve, we will need strong advocacy to protect their well-being in this, one of the wealthiest countries in the world.