Disability and the right to live and die on our own terms

I have written several times about the arguments of disability rights activists who oppose medical aid in dying (MAID) laws, here, here, here, here, here, and here. Disability rights activist John B. Kelly wrote recently in opposition to a proposed MAID act in Massachusetts that would be similar to the Oregon MAID law:  

I see a state-run program that will result in people losing their lives to misdiagnosis, treatment denial, and coercion/abuse, and depression. Not all families are united in loving and supporting us.

Doctors often make diagnostic mistakes: between 12 percent to 15 percent of people admitted to hospice as ‘terminally ill’ outlive the six-month prediction. Many more who never enter hospice also outlive their diagnosis. 

I don’t quarrel with Kelly’s factual statement that doctors cannot always be accurate in their prognoses.  But what happens to most patients, regardless of their prognosis, is that they wait to see how their illness progresses before they hasten their deaths.  They don’t acquire lethal drugs and immediately take them.  They know they have a window of opportunity, during which they can hasten their own deaths before they become too sick to be able to do so on their own.

Most are like Brittany Maynard, who had an incurable brain tumor.  She learned everything she could about her disease, received treatments for as long as they were effective, and monitored her own symptoms before she decided it was time to hasten her death.  When seizures became worse and unsuccessfully controlled, she decided it was time for her to take action to prevent inevitable and unacceptable suffering, based on her values.  The timing was her choice, determined by her symptoms, not the choice of her oncologist or based entirely on her oncologist’s prognosis.

Kelly argues that insurance can become unaffordable for some or insurance companies can deny treatments needed to support a person’s health, rendering such people terminally ill.  He gives examples of two patients, one in California and one in Oregon, who were denied what once were “routine, life-saving operations,” giving them only “the ‘choice’ of hospice or assisted suicide.”  I suggest that this is a problem not of having MAID available to all who are suffering unbearably, but of a health insurance system that is both inadequate and unavailable to 28 million Americans.  Universal health insurance at least as good as Medicare would help assure that people don’t die from lack of access to appropriate medical resources.  That is a goal most of us support–70%, according to a Reuters poll done in June and July 2018.

Kelly writes,

I have found that social prejudice and discrimination are far more injurious than the actual loss of abilities. People have told me to my face that they would rather be dead than like me, while the culture promotes a theme of ‘better dead than disabled.’ Movie examples include ‘Me Before You,’ ‘Whose Life Is It Anyway,’ and ‘Million Dollar Baby.’  

The movie “Whose Life Is It Anyway” was discussed on the blog in September 2018 by Gere Fulton here.  I have not seen “Me Before You,” but I did see “Million Dollar Baby,” a film about a young woman who wants to be a boxer.  After considerable effort, she convinces a crusty old boxing trainer to work with her.  Over time, she becomes good at boxing but is severely injured in a fight and left permanently paralyzed from the neck down.  She doesn’t want to live in such a condition and convinces her trainer to end her life.

If she had been given more time to adjust to her condition while receiving therapy and other treatment, perhaps she would have accepted her condition, as some others do, and want to continue living.  Such circumstances bring to mind people like Christopher Reeve (made quadriplegic by a horse-back riding accident and dying almost two decades later from cardiac arrest caused by an adverse reaction to an antibiotic), or Stephen Hawking (who developed a form of ALS in his twenties and died at age 76), or the woman two years behind me in law school, who operated a wheel chair with mouth controls.  These individuals had the medical, personal, and social support they needed to continue to live fulfilling lives as disabled persons.

What a person considers a fulfilling life should be decided by each person, not by my opinion or the opinion of any other person, including by someone who is disabled.  Social prejudice and discrimination affect many aspects of our lives, as we are judged for our personal hygiene, the clothes we wear, the way we talk, the words we use, the values we express, our political views, our perceived race or ethnicity, the way we keep our property, our age, and virtually every other spect of our lives.  It is up to each of us to decide how much societal expectations will guide our lives.  

The culture promotes drinking alcohol, but I choose not to drink alcohol.  The culture promotes eating meat, but I choose not to do so (though I do eat seafood).  Parts of our culture promote illegal drug use, but I choose not to participate in it.  Personally, I do not try to make anyone feel bad about what they drink or eat or put in their body.  Likewise, I do not promote or encourage hastening anyone’s death.  Along with the Final Exit Network, I support and promote the right of competent, autonomous human beings to make such decisions on their own.  

When my wife and I adopted a (so-called) mixed-race child over 45 years ago, there were individuals and professional social work associations who not only discouraged us from doing so, but tried to prevent such adoptions.  But we thought providing a family for a child who needed one was more important than listening to people we considered bigots.  

Today, I feel the same way about disability groups that want to prevent other disabled people from having a choice about when it is time for them to die. 

As I have written before, using the words of Katharina Heyer, who writes extensively about disability rights, disabled people can recognize the difference between “the decaying and dying body, and the disabled and living body.”  

When any person, including someone who is disabled, is dying, he or she should have a basic human right to decide whether to hasten their own death.  To deny this right to the disabled might be called “disableism.”

I want to join with the Not Dead Yet folks to offer these thoughts from a recent NDY email: 

[E]very time you share the message that we are NOT ‘better dead than disabled,’ every time you fight for the healthcare and supports we need, every time you prove our inherent DIGNITY by fighting the indignities society too often heaps upon all the beautiful, proud disabled people we are, [you are supporting disabled people’s right to live with dignity]. Thank you for all the forms of support you have given and please take comfort in knowing you have helped save lives.

My wish for the new year is that more people will join FEN in recognizing a right to die on our own terms, as well as a right to live in dignity on our own terms.