Deeper Levels of Stigma

Robin Williams and Michael J. FoxSince you’re on the internet, you’ve already heard the latest news — Robin Williams’ wife announced that he had been diagnosed with Parkinson’s Disease. He hadn’t wanted to announce it publically yet. He had not returned to drug or alcohol use. He was deeply depressed because of the Parkinson’s diagnosis.

The responses I saw, just in the first hour after learning this new information, revealed to me that there is a deeper level of stigma than mental illness. When all we knew was that Robin Williams had succeeded at suicide and that he had a history of drug and alcohol abuse and that he had spoken openly about depression and mania, there was an outpouring of compassion about the pain of depression. A few people aside, people were talking with compassion about depression. People were sharing phone numbers of hotlines. People were telling one another to be there for their friends, to listen, to care. People with mental illnesses wrote messages of solidarity and I even saw many folks seeing this climate of compassion and taking the strength and courage from it to come out of the closet about their own mental illness.

But now that we know that Robin Williams had Parkinson’s, what is the first thing I see? “It’s still tragic, but it’s more like a rational choice now.” and, “I feel as if, now came out he had Parkinson’s disease, we can agree he had a reason to choose to die.” and “If laws for euthanasia where better he could have chosen to die among his loved ones, family and friends and not alone and cruel.”

I’m happy to say that others joined the conversation and spoke about why those kinds of attitudes are so chilling to disabled people. But still, the immediate reactions of able-bodied people shocked me. And it showed me that we still have so much stigma to dig ourselves out from under.

Earlier this week, we were having conversations about the very real and very harmful stigma of mental illness. And we were seeing many strong and heartening responses about depression and suicide and reaching out to one another. Even Matt Walsh, who had been skewered for a blog post titled “Robin Williams Didn’t Die From a Disease, He Died From His Choice”, was trying to say that depression-fueled suicide shouldn’t happen because we should be reaching out to one another, loving one another, helping one another through our pain. He clarified his position in a follow-up post titled “Depression Isn’t a Choice But Suicide Is“. Although he still referred to depression as a “demon,” a position that Maia Szalavitz points out is stigmatizing in itself: “When even today’s headlines about addiction and mental illness refer to struggles with “demons,” you know that stigma remains strong.” (from How Much Did the Stigma of Mental Illness Harm Robin Williams?)

Going forward, we need to duplicate the sensitive conversations we were having about the stigma of mental illness, but this time, we need to talk about the stigma of disability. The instinctual responses I saw from people when they learned that Robin Williams had been depressed about being diagnosed with Parkinson’s are part of a “better off dead” stigma that disabled people encounter from others every day. In the Autistic community, we see it played out graphically, month after month, as parents and other caregivers kill Autistic children and adults and onlookers talk about the great difficulty of taking care of Autistic people, the cost, the suffering, the quality of life. So much sympathy goes to the parents who had been “saddled with such a burden” and so little sympathy, outside of the community of Autistics and our allies, goes to the disabled victim.

When the first response to learning that Robin Williams had Parkinson’s is that his suicide makes sense now, there is something very wrong. One person said, “Couldn’t he have called Michael J. Fox?? He died from fear of disability.” And I wonder if Fox will tell us that he did speak with Williams. Or if he will reveal that he had no idea about Williams’ diagnosis. I don’t know if Fox could have helped Williams come to terms with the diagnosis or not, but Fox has been pretty open about his own life and he’s surely someone I would want to have in my corner while I grappled with my life choices in the face of a Parkinson’s diagnosis.

Parkinson’s is a difficult disease to live with. Then again, so is depression, but our culture’s instinctual response to depression was to remind people that we should fight against it, not to say that it makes sense to commit suicide because who would want to live with the pain of depression? We must overcome our cultural attitude that a disabled life is a life not worth living. We must learn enough about the lives and thoughts of disabled people that we no longer have a knee jerk reaction of approval to suicide committed to avoid a disabling disease. And we must work to build a society that accommodates and includes disabled people, welcoming disabled people into the community of “us” rather than relegating disabled people to a pitied and feared “them” that “we can all agree” would have a perfectly valid reason to kill themselves.

Not only does this attitude devalue the lives of disabled people, judge their worthiness, “other” them, but it is dangerous. It is the beginning of a slippery slope. If we say that Robin Williams’ suicide is now understandable, acceptable, rational, reasonable, supportable . . . we begin to erode the right of disabled people to live our lives. If we are too much trouble, If we cost too much, if we demand too many accommodations, are we forfeiting our right to exist? If the world thinks that we would be better off dead, how willing will people be to help us live a good, satisfying, fulfilling life? Who wants to spend resources on people who “shouldn’t be here”?

So if you hear about Robin Williams’ Parkinson’s diagnosis and you are tempted to think it makes his suicide better, more rational, or even okay, stop to think about what attitude you are carrying toward disability and why you are shocked at a suicide due to depression but only sad about a suicide due to disability.

 

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63 responses to this post.

  1. Great post. Brava.

  2. My granddad died after 12-15 years of Parkinson’s degeneration, @ age 77. His quality of life was good before he lost himself to the disease (~last 6 years), family and friends remained involved.
    This was 25 years ago, and treatment options were fairly non-existent.

    Mike Fox has been at the forefront of treatment and research in the years since then. A Parkinson’s dx isn’t the same these days because of this; people have treatment options.

    Whatever the case, Robin Williams had his own problems for many years, drugs, depression /bipolar, and now a new dx of Parkinson’s?
    Whatever his reasons for suicide, they are his own, and he was suffering. It is too bad that he suicided, but being judgemental is not the answer.

    • Thank you and I agree. Judging him helps no one and potentially hurts those who are still around and needing compassion, help, understanding, acceptance, and more. Suicide is both the most private thing a person could do and the most public because of all the lives such an act affects. Robin Williams’ death has touched so many people, so very deeply. This is because his life touched so many people, so very deeply.

  3. One of the only articles I read discussed Parkinson’s associated depression, and how the combination of it and his mental illness might have been a driving factor. You can add to that the depressive episodes that people deal with following major heart surgeries. I think what makes me most sad is that people were aware he was struggling and allowed him to spend so much time alone and isolating himself. I doubt that would have happened if they had a better understanding of the course of what he was coping with. Ignorance kills.

  4. Reblogged

  5. Beautifully and wisely said.

  6. This is an excellent post. My only aside is this… I do believe there is still a stigma attached to diseases. Whether it’s Parkinsons, MD, MS, etc. I believe the collective “he had a reason to die” response to Robin’s diagnosis had more to do with people desperately needing an answer as to why he killed himself. I’ve seen it throughout my news feed this week. Suicide is never the answer whether it’s from a mental illness like depression or a physical illness like Parkinsons. It’s still a stigma but it gives people closure as to why someone so special could choose to end their life because they’ve never experienced something as devastating as facing a disease that so many still know so little about.

  7. That was wonderful post! Thanks from a parent with a child that has a disability. My youngest son has been diagnose with Asperger’s. He is 7 years old each day is a struggle for him. All I want for my son is to be given the opportunities that other children have. “Once I was at a park when a mother approached me to ask why I was watching the children that were playing with my son. I told her my son had Asperger’s and that loud noises scared him. “She called her 4 year old child down and told her child that something was wrong with the child. As she was pointing to her head. Told him not to go near him.” I could not believe this woman.
    But I know that most people are not educated about disabilities. So, lets try to educate others about disabilities.
    I have had other challenges, where I had called back to certain stores to ask them to educated their employees about certain incidents that has happened in their store. I have only asked them to educate their staff about with children and adults with disabilities. ” My son does not like the sound that a bag makes. When I ask the lady not to bag it up, she said it was store policy to bag all items up and took it from him as he was reaching for it.” Disabilities are not contagious to others. Thanks for reading!

  8. I disagree with you. If the reason he killed himself was because of his diagnosis with Parkinson’s , I doubt if it was because of the stigma of being disabled but more from a desire NOT to live like that. I have been chronically ill for over 30 years, at one time unable to walk, dress or undress myself without help. It passed, thank goodness BUT if I ever find myself physically dependent on another person where I can no longer toilet myself, feed myself etc. and it is not going to get better but worse then I would also kill myself or if that is not possible I hope that someone would have the kindness to kill me. I do NOT want to live like that. Not everyone is willing to live dependent on others, nor should they have to.

    • Read again – I was not addressing why Mr. Williams killed himself – that is his personal business. But suicide is not only a very personal act, it is a very public act that touches everyone around a person. For a person like Mr. Williams whose life touched so many people, his suicide couldn’t help but touch many people, too.

      I was writing about the stigma expressed by others in reaction to his death and the harm that stigma can cause other people who are still here with us. It is not my place to speculate about Mr. William’s actions, but it is my place to talk about the reactions of the living and I am hurt and frightened by many of those reactions.

      How you feel about what you would or wouldn’t want to live with is personal to you. The attitude you project into the world concerns all of us because it could affect the lives — or lead to the deaths — of many vulnerable people.

      So since you didn’t see what I was saying, I don’t know whether you actually disagree with me or not. You disagree with something I didn’t say, but thank you for reading and responding. I hope you choose to re-read and see my actual message. And I’m sorry for your suffering — life can be difficult and none of us make it out alive. It is good to help and support one another on our journey through it. Be well.

  9. Reblogged this on Earthwise Journal and commented:
    A great post about the attitudinal shift we need to make about mental illness and disability.

  10. Thank you for this. I shared this on FB and prefaced the link that if one reads only one article on Robin Williams it should be this one.

    I have only one question by way of one of my friends on FB – in the first paragraph, you say Williams “was deeply depressed because of the Parkinson’s diagnosis.” That doesn’t appear to have been part of the wife’s message who said that Williams had been dealing with depression, anxiety, and many other issues – dealing with the early Parkinson’s diagnoses being among those things.

    Were you paraphrasing how others were reinterpreting the original message from his wife?

    • Media sources suggest his recent deep depression was likely primarily due to Parkinson’s. The reason I agree with that suggestion is that it is a medical fact that even the early stages of Parkinson’s cause a deep, biochemical depression. It is one of the things Parkinson’s does: trigger severe depression through biochemical and physical changes to the brain.

      In this article, Depression Requires Recognition and Treatment, Messerschmidt writes, “people with depression who have Parkinson’s disease have a different symptom profile than those without Parkinson’s. The Parkinson’s profile includes higher rates of anxiety, sadness without guilt or self-blame, pessimism, irritability, and lower suicide rates despite higher rates of suicidal thoughts.”

      But Parkinson’s affects people with pre-existing mental illness differently. Those with bipolar tend to experience rapid cycling. Parkinson’s leads to the same morphological brain changes as those caused by unipolar depression, suggesting that the changes of Parkinson’s could exacerbate the effects of a pre-existing depressive disorder. Williams’ years of battling depression might have been caused by destruction of dopaminergic neurons induced by cocaine abuse and heavy cocaine abuse has been linked to the later development of Parkinson’s. The take-away is that Williams’ had many pre-existing risk factors for depression (and had frequently communicated severe depression and suicidal thoughts in interviews during the last decade of his life) and Parkinson’s strikes all those same brain areas, inducing depression even in brains with no pre-existing risk factors. William’s publicist revealed that the actor had been going through a severe depression and medical evidence indicates that the Parkinson’s would have played a large role in that. Was it the only reason that Williams was depressed? I doubt anyone, even the coroner, could determine that. Was it a major cause of his final depression? Medical knowledge would suggest a very high statistical probability that the answer to that question is yes.

      So to answer your question, no one can know with 100% certainty that the Parkinson’s was behind this most recent deep depression of Mr. Williams’, but the evidence is strong enough that I felt safe saying as much.

      That said, it doesn’t really matter (except to someone’s physician) why they are depressed. Our role as supportive fellow humans is to accept depression as real and painful and do whatever we can to help one another through the depression without judgment, without stigma, without blame. The way I figure it, life is hard enough already; our task as sensitive, caring people is not to make it even harder. We’re all here together and none of us make it out alive. I feel like our biggest challenge to rise to is to offer one another as much love, understanding, acceptance, and support as we can give along the way.

      Thank you for reading, Stephen Drake, and thank you for responding. Be well!

  11. Reblogged this on Silver Linings From the Sock Drawer and commented:
    This post struck a cord with me. If the world thinks that people with special needs would be better off dead, how willing will people be to help them live a good, satisfying, fulfilling life?

    As I shared in an earlier post everyone is facing their own battles that others may never see. Robin Williams death has lead many people to start talking about taboo subjects like depression, suicide and now added to the list disabilities. Let his life/ death remind us of what is at stake. Everyone deserves a chance to live a fulfilling life. Don’t become one more reason for someone to feel like life is hopeless. People with disabilities don’t need your judgement or your pity, they need your respect!

  12. Thank you for standing up for what is right and showing that people with special needs deserve respect.

  13. It’s interesting to me that the author violated a basic tenet of speaking about persons with disability–person first language. To consistently refer to “disabled people” is putting the disability in front of the person; defining that person by disability. Person first language recognizes what should be self-explanatory: these are PEOPLE with a disabling condition. To speak on in the article without this so basic use of the preferred language from the community of those with disability is to nearly undermine your post. I admire the insistence of the worth of all people. I have worked as a behavioral health social worker for 8 years in Chicago and for over 5 years with a medically fragile child in NM. Those experiences, including working with a national disability rights advocate, showed and demonstrated to me the power of language. You want to change people’s thinking? Start with how they language.

    • To Tom J. Heine: Many of us in the disabled community refer to ourselves as “disabled people” rather than “people with disabilities.” It is a way of framing disability as a social condition rather than a biomedical one: I’m disabled by social, economic and physical structures, not by my physical difference. Personally, I also find the the “person with a disability” euphemistic. I don’t refer to myself as a “person with whiteness” or a “person with femaleness”: I’m a white person and a woman. I know some people within the community still use the “PWD” language, but I imagine the author made a conscious choice to use the language s/he did.

      • Thank you, Anne, it was a conscious choice and for many of the same reasons you cite. Also, as an Autistic person, I don’t like person-first language because it implies that there is something shameful about my neurology that must be hush-hushed with person-first language. I am proud of my neurotype and don’t feel like there’s anything I need to be ashamed of about being disabled.

        • I was using the language “person first” as that is the exposure I have had working within the community. Various advocates, as you state, continue to use person first language. I was not aware of what is either another choice or an evolving terminology. I in no way implied that someone, anyone, should be ashamed of their disability. I have a significant mental illness and am anything but ashamed of it. I am not sure I agree that person first language implies that a disability is being “hush-hushed”, but rather that it is not what defines a person any more than gay,straight, black, white . . . does. Those are aspects of,in my mind, a human being. When I think person first I do not simply think of it in terms of disability but in a more universal sense: we are all human beings and all unique. To me those uniquenesses are attributes and human being, our personhood, is shared universally.Maybe this sort of comportment, the notion of shared identity as a species is what needs to be emphasized rather than separateness. This is not to imply some huge melding of all into an indiscernible human soup. I just think that to recognize the person behind the physical/emotional presentation should be first. I try to see the person across from me as a person I am relating to as another person. I would be foolish to assert that another’s attributes do not enter into the equation. I must also be cognizant of the fact that a person may want to more fully embrace a distinguishable attribute and that must be respected. If someone wants to be recognized as bi-polar or black or gendered first, I will respect that. But it will always be my default to see a person denuded of their parts in order to see the whole. And we are all whole.

          • Thank you, Tom. Please do know that when you enter the space of a disabled person and proceed to instruct them on what they should be calling themselves and people like them, you are violating their autonomy and lecturing them from a position of knowing who they are better than they know themselves. Coming from a position of authority (professional social worker) you are engaging in vertical oppression and identity policing that is quite unpleasant, to say the very least that I can say. I appreciate your attempt to explain further, but I should warn you that you cannot “denude” me of autism. Autism is pervasive and there is no part of me that is not Autistic. Autism is not a layer surrounding a core “normal person” but rather who I am through and through. You may believe you are seeing me as a person, separate from my autism, but you are not because that is impossible to do. It would be like claiming to see me as a person, separate from my mammalian traits or as a person, separate from my species of homo sapiens. I am who I am, all the way through. You can only see me whole when you are seeing my autism. I am Autistic and no linguistic manipulation changes that. To suggest that you have to mentally strip away my autism in order to perceive me as a whole person lurking beneath that “aspect” of who I am is deeply offensive to me.

            Here are some links to help you understand better why the disability and neurodiversity community to which I belong prefer identity-first language and have for many years now. I hope you find them helpful:

            http://autismmythbusters.com/general-public/autistic-vs-people-with-autism/jim-sinclair-why-i-dislike-person-first-language/

            http://autisticadvocacy.org/identity-first-language/

            http://aaspire.org/?p=about&c=language

          • Thank you for your thoughtful and enlightening response. I did try to touch on not being able to separate, albeit in one sentence, when I stated “I would be foolish to assert that another’s attributes do not enter into the equation. I understand now that you don’t see attributes but a person wholly, all things. I will check the links and use them to assist me in my current studies. Hopefully I can glean and absorb enough to benefit and bring up to speed my fellow students as well.

            Taking my previous best efforts and trying to make them better. Thank you for your kind assistance..

          • Thank you for this dialogue. I appreciate the calm and respectful exchange. Be well.

  14. There is a lot I think about this. None of it is negative. But if I stated my case, you would all think I was crazy.
    I think people shouldn’t judge others, for whatever they do. It is there choice for whatever reason.
    All I say, is now that you are in Heaven, Look down upon us, and send us healing light. You can help us more now than ever.
    Thank you in advance for all your heavenly help.

    • Thank you, Theresa. I agree about not judging others. It is one thing to decide for one’s self that one’s own life is not worth living but it is not our place to decide that for someone else. That is the core of my point here: it is frightening and dehumanizing for us disabled people when others feel they have the standing to decide whether our lives are worth living or not. Thank you for getting it and thank you for sharing.

  15. Although I do not believe Parkinson’s somehow gives him a valid reason for committing suicide, the revelation of the diagnosis at least explains why he might have been in a depressed state. Think about it, he has battled over the years with depression and mania. Most clinically depressed people see themselves as being a more of a burden to others than a pleasure. Now tell someone who already sees themselves as a burden that they have a disease that will make them even more of a burden on their friends and family. After sliding into a depressed state, they convince themselves that there is no more joy to be found in life and they are actually doing their loved ones a favor by ending it all.

    • Thank you, Jeannette. My purpose is not to judge Robin Williams. I want to remind people that the only person who should be judging whether a life is worth living or not is that person. It is when our culture grants people permission to decide if someone else’s life is worth living or not that we need to stop and think, because that attitude leads to murder, neglect, dehumanization, and more.

  16. Maybe it’s just me, but nothing has ever changed my feelings toward the loss of such a unique individual. When I heard that Robin had died, I felt that the world had lost a great soul. When I found out it was suicide, I did not alter my beliefs in the slightest because his death was still a loss, and I respected the man just as much. The news of his parkinson’s only made me more informed. Why have my feelings never been altered? Because I understand I will never truly know why it happened. The only person who could tell me can no longer speak. I would love to talk to him about it… to better understand what brought him to the point that he felt that this was his only action. But I can’t. All I can do is grieve his passing and remember all that he contributed to this world while he lived,

    • This is exactly how I felt, James; I too wish I could understand by speaking to the only person that knows. It is such a helpless feeling, because it is something we can never learn about from those that left this life that way.

  17. Posted by bluebirdsister on August 16, 2014 at 12:12 am

    It doesn’t matter how we look at Robin and his desire to take his life. It doesn’t matter whether he couldn’t live with the emotional pain of depression, the depression associated with addiction, or the pain of knowing what was to come with his disease.

    It’s not our call. It was his. Those who live in pain, can’t give it to someone else to feel, they must deal with it alone. No one can judge his depth of physical or emotional pain,

    He had to make his own decision.

    It was his life to live or not…Many loved him, but we couldn’t save him.

    • What you say is so very true! Which is why I spoke out against people judging his action in a way that endangers all disabled people.

      Thank you for reading and commenting, bluebirdsister. Be well.

      • What really upset me, is that he apparently once said: “I used to think the worst thing in life was to end up all alone. It’s not. The worse thing in life is to end up with people that make you feel all alone”. THAT is avoidable. THAT is what we need to work on as fellow human beings!

  18. I’m not quite sure of the point being made here since both depression and Parkinson’s disease can be disabilities. The reason that I think people may have the reaction they do is that depression has such a wide range of meanings that people think that its fairly easy to recover from most bouts of depression whereas Parkinson’s is not seen that way. Parkinson’s is seen as a degenerative disease that gets worse and worse and that its not easily controlled by medication or other means.

    It is thought that medication basically alleviates depression and that a person then returns to their previous level of health. It is true however, that depression can be just as debilitating as Parkinson’s disease. Therefore, I’m not sure that the reaction you describe has to do with the idea that its better to be dead instead of disabled but is related to the perceived level of disability as well as the perceived ways some disabilities can be accommodated or mitigated or recovered from and the perception that others cannot.

    I think that people do have different fears about different types of disabilities. Some may feel that they could handle being deaf due to sign language, or being blind due to the possibility of using a guide dog, or have arthritic knees due to being able to get implants but not be able to handle dementia, or schizophrenia, or ALS because they are more difficult to live with. Their fears and perceptions about these conditions may or may not be accurate but its there just the same.

    • The point being made here, in a nutshell, is this: to decide if a life is or is not worth living is a personal decision that is only up to the individual who is living that life. When we start to speculate about the value of other people’s lives or whether other people are living lives worth living or lives worth ending, we are heading down a slippery slope.

      I have seen people saying that it is rational, logical, makes sense, etc. for Williams to end his life because of the horror of living with Parkinson’s, but if that is why he ended his life, that is a personal valuation and not for us to make. Obviously Michael J. Fox had a different opinion . . . and a different life. And his choice to live is his choice and also not ours to judge.

      There is a chance that Williams did not end his life because of Parkinson’s, but because of depression — in other comments, I talk about the severe depression Parkinson’s brings, exacerbated by Williams’ pre-existing depression. And I do agree with you that depression can be extremely disabling as well. My own inability to maintain employment is due to multiple factors, recurrent depression being one of them. Society compounds the disability by too often failing to understand why I can’t just “snap out of it.”

      My point, though, is that the reasons were Williams’ — not ours. We can think all day about what we would or wouldn’t be willing to live with. (None of us really know what we’d actually be willing to live with or die for until we’re actually in those situations.) But we have to be careful not to project our own values onto others. Nurses are convicted for administering unrequested lethal morphine doses in the name of mercy. Parents kill their disabled children and the news stories attract commenters who sympathize with the murderer and speak of the low value of the disabled child’s life. This is the slippery slope I wanted to remind others not to slide down. The value of a life can only be judged by the person living it.

      • Yes, I totally agree that no one can really know the complexities of a person who decides to take his/her own life unless they tell us before they do the final act. We should never try to decide for someone else what makes life worth living. As a person who has developed multiple disabling conditions during my lifetime I have learned a lot about disability and how to handle it.

        In terms of trying to dispel the idea that it might be better to be dead than to be disabled with any condition, I think we need to deal with these kinds of fears that others have with care and compassion. We should do what we can to raise awareness, end prejudice, bigotry and discrimination, support reasonable accommodations for people as well as innovation and access to assistive technology and work of inclusion and support of people with all kinds of abilities into our communities.

  19. I love this, thank you.

  20. Posted by tigrlily61 on August 16, 2014 at 9:40 am

    This is really a fantastic article, and I am deeply grateful that you wrote it. I’ve been in a tailspin all week, and had no hope of responding to the public reaction to the Parkinson’s revelation. The piece has been widely circulated and admired. Thank you again, so much, for your excellent work. be well -AH

  21. In the back of my head I can’t help wonder if his wife released the Parkinson’s diagnosis because of the backlash against depression. That somehow that diagnosis is more acceptable than depression. Actually, I wonder if it is even true.

    • It’s probably true. I predict we’re going to be seeing more high-profile cases of Parkinson’s before too long as well. Medical journals are reporting a surge of non-genetic Parkinson’s cases as the damage done to the dopaminergic neurons from the heavy cocaine use of the 70s and 80s is turning into a dramatic rise in Parkinson’s cases now. Williams was open about his heavy cocaine use. He was one of a group of people at high risk for Parkinson’s.

      I am so sad. I had to go back and edit “He is” to “He was.” It’s still sinking in that he’s gone.

  22. Coming into any disability is rather hard. I have a disability Witch is Cerebral Palsy from birth. I do not have any comparisons I never walked I been in a wheelchair all my life. I am glad I was born into the disability. If I was “NORMAL” and had come into a disability I think that would be harder to deal with. Although taking your own life is not an answered either. Robing William Had a lot of other issues going on as well and I think he was just overwhelmed by it all. So sad

  23. Posted by Joseph on August 16, 2014 at 5:32 pm

    Until I read your article, I didn’t think much about the revelation that Williams had Parkinson’s. Your article’s well-written, and posits an important point: that people ought not to rationalize a suicide by pointing to a disability, since that conveys an idea of hopelessness on those afflicted.

  24. As is so often the case, I am deeply grateful for your words and perspective. Thank you <3

  25. I am disabled. My child is disabled. And yet, I feel like I DO understand his choice more due to the Parkinson diagnosis. Not all Parkinsons is the same. It is more of a continuum, ranging from “You have movement issues for years but your intellectual capacity does not diminish” to Lewy Body Dementia where the capacity for self care and speech is lost within a couple years of diagnosis and death follows not long after.

    I watched a family member die of LBD from 2005 to 2009. It was ugly and demoralizing and we cared for her meticulously and lovingly and if she had had the means and capacity to decide to suicide she probably would have within the first year, she was so, so miserable with the process.

    As much as I do not like the idea of suicide…. I believe in a fundamental right of self determination, and the choice is not mine to judge… but I DO understand it better myself in a situation like this. Not because he SHOULD have suicided, or because his life didn’t have value with an illness, but because he was looking at a disease which very well could have robbed him very quickly of all that he valued in himself, which could also have robbed him very quickly of the ability to do anything about it.

    He was a brilliant man. He was friends with Michael J Fox. I trust his judgment when it comes to knowing his own diagnosis and willingness to proceed along that path.

    There is a fundamental difference between believing in the right of self determination and comprehending a choice and thinking that that choice SHOULD be made a certain way. The diagnosis DOES make the choice more understandable. That’s a feeling and it’s not “wrong”. And it doesn’t mean my life and my daughter’s life don’t have value. It doesn’t even mean my mother-in-law’s life did not have value after her diagnosis. I don’t think my MIL should have committed suicide…. but she wanted to die many times before her final illness, and I always understood why. If you have not suffered through it, you don’t know, and should not judge.

    • You get my point, which is that it is not for us to say. I don’t blame or judge him for his choice. But we need to be VERY careful how we talk about suicide and disability because there are people out there killing in the name of mercy and I don’t want any more victims. We need to be VERY careful how we talk about this, because so many innocent lives are at stake. I do not judge Robin Williams — his choice was HIS choice. But there are so many people who have that choice taken away from them. For their sakes, we must be very careful about how we discuss quality of life issues. Robin Williams had the choice; all the disabled children who are killed by parents and caretakers and all the elderly who are abused and euthanized without their consent are depending on us to change society’s attitudes about what “a life worth living” ought to mean.

      Thank you for reading and commenting. Be well.

  26. Holy fucking powerful. Well said. Sharing on my fb. Page. Thank you.

  27. I am a disabled person, born with spina bifida and hydrocephalus, and yet my reaction was that you attribute just to ‘able bodied people’. i believe in quality of life, not because i believe i am better off dead, or I am a burden to my friends, family and society, but because i want more for myself than a life of chronic pain. I am 28 years old and feel 82. surely, the body i have is of an 82 year old. Williams’ death was not about the parkinsons, it was about the parkinsons ON TOP of the depression, ON TOP of the alcoholism, ON TOP of the drug abuse. He was tired of fighting. as I am. It doesn’t make me suicidal. i’m not going to off myself. but it sure as hell DOESN’T make me feel better about myself that i’ve suffered 28 years and my disability gives people a normal life span, which means I’ve got about another 80 years to go. that is NOT something i’m looking forward to.

    • As I’ve said again and again, you have the right to decide when/if you’ve had enough. But should someone else decide that for you? Many of us living with disabilities get asked if we’ve considered suicide because of our disabilities or, worse, get told again and again that people would rather die than have our lives. That is the kind of attitude I am trying to discourage. If you decide you’ve had enough, that is a personal choice that I don’t judge. But when society feels it’s okay to look at those of us struggling to maintain a quality of life that we have made peace with but someone else finds intolerable (as if it were their business in the first place) and judge that our life isn’t worth living, then we see exactly what we do see — murders of the disabled in the name of mercy.

      It is a decision that should not be taken out of our hands but too often is. That is the attitude I am protesting. How you feel about ending your own life is none of my business (unless you specifically come to me and ask for help.) How we, as a society, view disabled people and whether our lives ought to be ended or not, is all of our business.

      I want something better for you, too — better health outcomes, better pain management. I don’t consider death to be something better. Death is erasing the bad, not replacing it with good. But still, the choice is in your hands and none of my business. Thanks for reading and responding. Be well.

  28. Thanks you really made me think. Again. You are right. Why was it suddenly more acceptable : (

  29. This is an excellent post. As a disabled person in Britain in 2014 I have been on the receiving end of the current government’s demonisation of the sick and disabled, led by Iain Duncan Smith, and this notion that you’re better off dead than disabled seems to be at the forefront of the agenda (because we’re a burden, a drain on the government and taxpayer, our lives are worth less and by being dead we’d be doing everyone a favour). IDS has no scruples or qualms about pushing his agenda and I’m half-expecting him to use this incident to further emphasise that sickness and disability make life not worth living. We need to change the attitude that disability is just a burden and something to be eliminated.

  30. Reblogged this on Another Spectrum and commented:
    It chills me to think the the press and public can rationalise that suicide is more acceptable or understandable in some circumstances than in others. How can one form of disability be a “better” reason for ending one’s life than another? Is this the beginning of a dangerous slope we’re taking where we move from “understandable” to “reasonable”? Could that lead to “logical”, or heaven help us, “expected”? I believe assigning degrees of justification for suicide places an unacceptable burden on the disabled.

  31. I am disabled with Parkinson’s Disease, in retrospect, for the past 23 years, I am disabled by depression (which came first the chicken or the egg?), I am disabled as a woman by gender as the prevailing attitude is women are not equal to men and less deserving (we have politicians deciding what health care we are allowed). I am disabled by “others” lack of knowledge of what PD really is. “ISN’T IT THE OLD PEOPLE WITH SHAKING DISEASE?” Guess what, I was 38 when symptoms first appeared (no arm swing, limping, stiffness, etc) but I don’t tremor or shake….so I must be malingering – thoughts by strangers who see me park in a handicapped spot or by my very own physicians who examined me over and over again.

    I can’t even imagine the hopelessness Robin Williams must have felt to have taken his own life. How he died or why he died is not for any one to judge or to continue to rumerate over and and over again. He brought us laughter, memories and finally awareness of our own mortality, of what any disease can do to a person both physically and mentally.
    I would be lying if I said I never considered suicide. We are kinder to our pets than we are to ourselves. When a pet suffers, we euthanize. Why can’t we be so kind to our selves. PD is like living in a tunnel and neither expecting nor seeing the light at the end of it. Don’t know how long the tunnel is, how lost we begin to feel, slowly blinded by the darkness. At the end of my tunnel, I want my ashes dumped into my composter so that I will be pushing up daisies the following spring. Now that makes me laugh.
    Thanks for writing this thought provoking article.

  32. Reblogged this on Stumbling Toward Grace and commented:
    Great post. As many of you know, my son Joshua has autism. I have never once considered him a burden. We have our good days and bad days–as does any parent. This article highlights the need for society to not think that those with disabilities are better off dead. Joshua has enriched my life and the life of those around him since his birth. What I want to ask to those who think this, who is the disabled one?

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