"This leaves patients with the choice of ending their lives prematurely or crossing that threshold where they won�t be able to, thus damning them to a lingering end of dependence, misery and pain. Left with this choice, I must go with prematurely ending my life."
The second point raised by Mr. Johnson concerns organ donation. He believes his organs could help others who will die waiting for a life saving transplant. He notes:
"Although my motor neurons are wasted, only my muscle tissue is affected. Otherwise I�m a perfectly healthy 55-year-old male. I exercised daily. My blood pressure is still 110/70, and my heart rate a steady 70. I have perfectly functioning lungs, kidneys, heart and liver. There are candidates out there who could use my organs to save their lives. But even as a living donor, I am excluded from donating anything".
For those unfamiliar with assisted suicide legislation, likely the vast majority who will read Mr. Johnson's editorial, will be persuaded by his words. Mr. Johnson taps into very basic assumptions about disability and the end of life. For example, disability is a fate worse than death and that death is preferable when faced with a fatal condition like ALS. Mr Johnson wrote:
"I have become trapped inside a motionless body, a living mummy, a burden to those around me. The list of things I can�t do grows longer each day. My core is almost gone, and soon my arms and legs will become completely detached. Most of my muscles visibly vibrate 24/7. All that constant contraction causes perpetual fatigue and tension headaches. My doctor tells me ALS is a painless disease and that there is no reason to consider suicide. Maybe I�m just a wimp.
I am a social creature by nature, a party lover, invariably the last to leave. Now that my speech has lost its volume and become incoherently garbled, I find myself irrelevant in social situations. This isolation is every bit as painful as the physical pain and frustration imposed by ALS. Now, too, I am losing power in my arms and hands such that I type with one gnarled index finger and can no longer even pick up my iPhone."
Mr. Johnson is not a wimp. Mr. Johnson, like all of us, was not prepared to learn how to adapt to his condition. But adapt we do. In fact the vast majority of us when faced with a life altering disability or those who are forced to deal with end of life issues adapt. Some struggle for years with Depression while others rapidly move on. Some are ruined financially due to medical bills that insurance refuses to cover. Some die gracefully. Some rage at death and become embittered. Some people with a disability adapt with grace and beauty. Very, very few choose to die--they are the exception not the rule. And here is where I am left angry. Why is it that only people like Mr. Johnson who want to die are given support. Why is it that paralyzed people that want to walk are lauded while those who adapt to paralysis and want adaptive devices to empower them are perceived as a social burden or an economic drain.
When I read Mr. Johnson's editorial here is what I thought: why has no one spoken to him about brain scape or the myriad of ways he can communicate. I have met many respirator dependent quadriplegics, some with ALS, who lead rich and rewarding lives. Mr. Johnson can continue to have a rich and vibrant social life. While his condition is indeed fatal I see no reason why he cannot enjoy his life in the here and now. His words above are based on an implied social fallacy: life with a disability is inherently less, it is an existence that lacks dignity. People with a disability are not social beings. People with a disability cannot or do not socialize and are a burden on society. No one delves into the why behind this faulty premise. For example, I do not visit any of my friends homes--friends who do not have a disability that is because I cannot enter their home. Steps abound as do needless architectural barriers at work, stadiums, office buildings, hospitals, athletic facilities, libraries, and the list goes on and on. This is not a medical problem this is a social problem. American society does not value the existence of people like me and Mr. Johnson. The physical environment is built specifically for those that are bipedal. Access issues are an after thought--something that must be included because the law states it must be so. Such access is not valued--it is merely a box that must be checked off.
As for organ donation, Mr. Johnson's words sent chills down my spine--the chills only went to T-3, my level of paralysis and sort of wander down my side (a very strange sensation). Mr. Johnson's words are simply dangerous. What would happen to any individual with a high cervical spinal injury and more generally any spinal cord injury? Would this person become the ideal organ donor? Imagine if you were suddenly paralyzed, had never met a person with a spinal cord injury and knew nothing about disability. What would you think if you were told you will be paralyzed for the rest of your life? Would you be happy? Hardly. What if news of paralysis was followed by "you can be an organ donor and never live with paralysis". I have no doubt many would choose to donate their organs and die. This decision would be one based on fear and ignorance. Yes, disability may indeed be a fate worse than death. None of this even broaches the economic implications of long term disabling conditions. Simply put, it is expensive to be disabled. The other day I figured out that in the last 35 years I have spent nearly $25,000 on Roho Cushions alone. I shudder to think of what I have spent on basic necessities like catheters, wheelchairs, tires, inner tubes, medications, home renovations etc. Being paralyzed is an ever present economic drain. Would some choose to die rather than go into debt, declare bankruptcy and be forced to live in a nursing home? Worse yet, would organ brokers seek out paralyzed people. As Mr. Johnson notes our organs are perfect. Perhaps this sounds far fetched--too much like Soylent Green the classic science fiction film. I am not so sure. I am after all told once or twice a year by a total stranger that they would prefer to be dead than use a wheelchair. Don't take my word for it, Dr. Phil just had a show in which he advocated parents should be allowed to kill their disabled children. This was deemed "mercyful". Frankly, I fear such mercy. I truly fear for my life when I enter an institution such as a hospital. I am fearful not of death but some "caring soul", a "professional" who thinks I have suffered enough.