Ableism and the Right to Die

Last week, I referred a caller to the Final Exit Network (FEN) to John B. Kelly, a Not Dead Yet opponent of right-to-die (RTD) laws.  The person was inquiring on behalf of his brother (I’ll call him Carl) about the education and training services that FEN offers to applicants who want to hasten their deaths.  The brother was trying to learn if FEN could help Carl, who was despairing of his condition.  Carl is in his late 50s and had been seriously injured 18 months earlier in a car wreck, leaving him without the use of his arms and legs, a condition that could not be changed by medical care and treatment.  I thought that Carl could benefit from learning about how Kelly lives as a quadriplegic.

When I talked to Carl’s brother, I explained that hastening one’s death using inert gas required the physical ability to assemble the inert gas canister, regulator, tubing, and hood, actions Carl would not be able to take for himself.  Because I respect the right of every person to decide for themselves when it is time to die, I discussed with Carl’s brother the only other way that I know Carl could manage to hasten his own death–Voluntarily Stopping Eating and Drinking (VSED).  I told the brother where he could find information about VSED.

During the discussion, Carl’s brother said that he didn’t want Carl to die at such a young age, but he respected Carl’s right to make that decision.  I told the brother about Kelly and suggested that he contact Kelly to learn what resources might be available to assist someone who is quadriplegic and so that he could learn directly why Kelly believes life is worth living.

I thought that Carl might benefit from hearing how some people adjust to living without the use of their arms and legs.  In fact, I think that all people could benefit from a greater understanding of what keeps Kelly, and others in his physical condition, living.

Often, I read or hear able-bodied people express views such as those expressed by Dan Diaz, the husband of Brittany Maynard, who died in 2014, using Oregon’s RTD law:

If I find myself in a situation where I can’t go to the bathroom on my own, where someone has to change my diapers, where I can’t feed myself, where I can’t care for the people around me, where other people have to move me around to keep me from having bedsores, I would then submit, ‘Is that really living?’  

As much as I respect Diaz for his advocacy for his wife, who had an inoperable brain tumor, and his promotion of RTD laws throughout the country, I find his views, taken without further context, represent the ableism expressed by many able-bodied people.

Ableism is defined by the Center for Disability Rights as

a set of beliefs or practices that devalue and discriminate against people with physical, intellectual, or psychiatric disabilities and often rests on the assumption that disabled people need to be ‘fixed’ in one form or the other.

Diaz’s statement sounds like ableism, as the Center defines the term.  However, if he expresses his personal views only for himself, explaining when and under what conditions he would not want to live, he has the right to hold those views without criticism, just as we all do.  But a problem arises when our personal views devalue the lives of thousands of people: “Is that really living?”  When people are devalued, it becomes easier for others to discriminate against them and to make fewer resources available to help them.

I have often expressed my desire not to live too far into the loss of my mental faculties.  My views, however, did not lessen my advocacy for my father, who died with Alzheimer’s.  Sometimes, even mild advocacy, like providing round-the-clock sitters and taking notes about the patient’s progress and circumstances, can be threatening to care institutions.  This happened with my father, who was in rehab after breaking his hip, during which time he developed an infection that required a few days of hospitalization.  The rehab facility, where he had been, refused to readmit him after the infection was gone.  I could never prove that it was because of our mild advocacy for him, but I could not find any other reason.

Another rehab facility failed to provide adequate response to an alarm system used in case dad tried to get out of bed unassisted. The alarm was needed because dad could not remember that he couldn’t walk unassisted because of his broken hip that had just been repaired.  A meeting was convened to discuss my complaint to a nurse, who was offended by my tone.  Fortunately, my father was allowed to stay at the facility until his rehab was completed, probably because I agreed to hire sitters to be with him round the clock, and they would respond to the alarm, instead of ignoring it.

I don’t devalue the lives of those with dementia, even though I don’t want to live into the later stages of the disease.  That is my choice; it was not the choice of my father.  But I did not devalue his life because of my personal choice.

How we express our views about the right to die is important to keep in mind.

The right to die is often, but not always, about intractable pain and suffering, or the reasonable anticipation of such pain.  FEN explains its Guiding Principles this way:

We hold that mentally competent adults who suffer from a terminal illness, from intractable physical pain, or from a constellation of chronic or progressive physical disabilities, or who face an impending loss of autonomy and selfhood through dementia, have a basic human right to choose to end their lives when they judge their quality of life to be unacceptable.

We hold that a mentally competent person with intolerable suffering or pain has the right to end his or her life, choosing the timing and persons present, and should be free of any restrictions by the law, clergy, medical profession, friends or relatives.

We do not encourage anyone to end their life and are opposed to anyone encouraging [another] to end their life.

We do not provide the means for self-deliverance and we do not assist in self-deliverance.

We support research for safe, inexpensive medications or other safe, certain and painless methods that would allow for a peaceful self-deliverance.

FEN advocates for autonomy in decision-making, including for the disabled.  But it recognizes that mental outlook can affect such decision-making.  Clinical depression is a marker for exercising great care in accepting clients for education and training in how to hasten their death.

When Carl’s brother explained Carl’s condition, it was apparent to me that the sudden onset of Carl’s disability figured prominently in his current decision to want to die.  I thought Carl could benefit not only from the mental health resources his brother had found for him, but also from learning from another quadriplegic how he had found meaning in life.  I also suggested seeking help from disability rights groups in his area.  I did not disrespect Carl’s decision, but wanted to be sure that his life was not devalued and that he was not being discriminated against in services provided to him.  

One way we can respect the life decisions of all people is to support Medicaid, the health resource for more than 10 million disabled people (including Carl).  It is a way we can show that we value all lives, including those of the disabled and other people with limited resources, whatever our personal opinion about our own life.  In this way, we help assure autonomy for everyone.