Tag: euthanasia

Blog Posts

Parkinson’s Disease and the Inevitable Change in Temper Surrounding Robin Williams’ Death

Meghan

With the tragic and heartbreaking news of Robin Williams’ death by suicide, many people have been contemplating the reality of severe clinical depression and asking how it could have crept into the life of someone as talented, fulfilled and beloved as Robin Williams. I myself derived hours of enjoyment, solace, and even edification from his movies, some of which dealt sensitively with the topic of suicide. Perhaps his death illustrates that depression is not a character flaw; nor is it a respecter of persons.

I am more than disheartened to witness the inevitable comments that have appeared on the internet in response to the news that he was battling early onset Parkinsons’ disease. Underneath an internet story on this news, one commenter wrote:
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It gives some basic level of comfort in that Robin was successfully fighting his depression but got sidetracked by a disease with a lousy prognosis. I feel that his actions now weren’t of depression but of self determination. I truly feel, that when faced with imminent deterioration of function, the decision is that of the individual. I’ll miss you Robin, I grew up with you from age 10 on Happy Days and Mork and through your career, but I’ll always respect your decision.

As mentioned in the related news story, scientists have established that Parkinsons inhibits the production of dopamine, which, like serotonin and norepinephrine, is responsible for facilitating concentration, energy and feelings of well-being. Major depression is already indicated by a lack of these chemicals; hence, I imagine that Parkinsons-induced depression could push someone with preexisting depression into a psychological meltdown. Perhaps Williams situation frayed his connection with humanity’s innate survival instinct, giving previously checked suicidal impulses uninhibited access to his mind. Whatever the case, what happened on August 11th indicates that when he killed himself, Williams was not successfully fighting his depression: he fought valiantly, but he lost that battle.

Moreover, the respect this commenter is offering to Williams only exacerbates the situations of people with unmet mobility needs. We are approaching the second decade of the twenty first century, yet people who use wheelchairs, respirators, or other mechanical devices to engage our world; as well as those with psychological and cognitive anomalies that preclude our society’s narrow concept of independence, still lack the right to receive related services in their homes.

This would likely not have been a problem for Williams, who probably would have been able to fun the receipt of such services himself, as can others with a solid middle to upper class income. Hence the error of validating actions based on the resources of a privileged few: the underprivileged are always left to experience the negative consequences of that action. Such people need support, compassion, accommodation and access to treatment; not a choice between marginalization or death.

Ultimately, the attitude expressed by the aforementioned comment reflects a meme with universal and oppressive implications: Being impaired and/or requiring the help of others is worse than anything else. Death, despite its historical role of inducing near-pathological fear, is suddenly perceived as good. No one can know what lies beyond the grave, but let us not push ourselves or our loved one toward it with empty, privileged platitudes of “self-determination.” Instead, let us do the hard work of providing whatever individuals need to regain fulfilling lives.

Blog Posts

Disability and the Concept of Dignity

Meghan

Those of us with disabilities have had experiences that may seem truly horrible to those without disabilities. Some of us are wheelchair users. Some of us grew up in special education. Some of us have had multiple surgeries or use a respirator. All of these experiences fall into the category of things society considers to be “undignified.” My involvement in Disability Studies circles has shown me that a unique, disability-rights centered, progressive ethic regarding imairment and disability exists.  For instance, during a presentation on scars and disability at the 2011 Disability Studies Conference, a presenter mused, "I'm an agnostic…but, if there is an afterlife, I can't imagine that Osama Bin Laden or Jack Kevorkian are enjoying it too much." 

Recently, Tim Shriver of the Special Olympics wrote a blog post entitled “Raise Your Voice for Dignity!” concerning the recent travesty experienced by Amelia Rivera and her parents at the Children’s Hospital of Philadelphia. During a consultation at CHOP, Amelia’s mother was told that the hospital would not perform a kidney transplant because the three-year-old is mentally disabled by Wolf-Hirschhorn Syndrome. The same week brought another travesty concerning the plight of an unnamed woman with schizophrenia who was almost forced to undergo an abortion and sterilization (see these posts from the Boston Herald and Jezebel). These stories epitomize what it means to experience true indignity. (Psychological recovery from the knowledge of such inquity also merits about a gallon of Brain Bleach).

When I was growing up with a disability, it really didn’t feel like a “big deal” in and of itself-what made it problematic was other people’s attitudes. To put it another way, my disability entails deficits in spatial awareness and coordination. It is difficult to describe just how seriously this impacts my daily life, but it means that I get lost very easily. I trip, bump into things, etc and have always done so. Again, this is and was a nuisance, but I have always had a good sense of humor and self-respect, so I would let it go. I didn't know I was "disabled" and "different" until someone told me. Frustration, or even significant challenges, are not the same as “indignity.” I’ll never forget one teacher who blamed me for being bullied and tried to make me stay in at recess so this wouldn’t happen. When I went out to recess anyway and was bullied, she wrote home to my mother to tell her that it was my fault-for going outside during recess. THAT was indignity. I could provide copious examples of people in authority doing similar things while I was growing up. I watched as peers with disabilities experiencd the same tactics. Maybe the teachers and other adults who did this thought they were doing the right thing, but what they did was punish bullying victims instead of the bullies. Moreover, by doing this the bullies got what they wanted-the elimination of their targets. They were not forced to change-in fact, they were taught that their behavior is justified because there was something obviously wrong with their victims, who had been removed from activities that they, the tormentors, continuied to enjoy.

So it is when the adult world suggests abortion and euthanasia as a solution to human disability. This practice has the same effect as taking bullied students off the playground at recess. Instead of addressing social inequality and allowing disenfranchized people to experience the simple things we all enjoy, people who will find themselves in this category are removed from the playground of life, so to speak. In doing so, the original goals and perspectives of the eugenics movement are preserved.

Because of such experiences, people with disabilities often embrace a different concept of dignity than mainstream individuals. It seems to me that of late, the concept of dignity has been conflated with “propriety,” and “orderliness.” Conversely, indignity has been equated with “yucky” and “embarrassing.” These conceptions are wedded to current conceptions of autonomy, which is often defined by the ability to execute daily tasks without assistance (what disability advocates would refer to as accommodations) or any kind. In contrast, a disability rights centered concept of dignity centers primarily on the facilitation of autonomy and interpersonal respect. Accessable buildings, education and mediical care promote automomy, whereas inaccessibility creates indignity. A disability-conscious concept of dignity acknowledges that indignity is caused by social constraints upon the tools needed to facilitate personal decision-making. Dignity does not mean looking past someone’s disability, but accepting it as an integral part of who that person is and respecting that individual’s right to equality.