Why I Disagree With the New Discussion Around Robin Williams' Death

This week, Robin Williams’ widow, Susan, spoke up about his cause of death in an interview with ABC.

When the reporter, Amy Robach, said, “Most people think your husband killed himself because he was depressed,” she replied, “No. Lewy Body Dementia killed Robin. It’s what took his life.”

As someone personally familiar with both Dementia with Lewy bodies (DLB) and depression, I understand why someone would want to know exactly what was going on with their loved one at the time of his or her death. I don’t disagree with the Williams’ family needing answers and sharing their findings with the world. I hope their story helps raise awareness about DLB, the misunderstood and often misdiagnosed form of dementia that my mother died from in January of 2015.

My only issue is how we’re now framing the conversation around Robin’s death. I’ve heard people say, “So sad. Now I understand why he did it,” or  “I would too if I were losing my mind.” It seems people are using the DLB diagnosis as a valid reason for Robin’s death — and denying he even died by suicide.

In my opinion, these kinds of responses to the current framing of Robin’s story create five serious issues:

1. A need to justify suicide. 

Our culture seems to have a need to justify suicide, and apparently, suicide is only justified if you’re going to be physically or mentally incapacitated. Death by suicide can be an outcome of many different illnesses. But if we keep needing to find ways to justify suicide, we might have less compassion and understanding when suicide takes the lives of those we judge as not “sick enough.” You can see this issue in the way the interviewer, Amy Robach, says Robin “killed himself.” Already we’re seeing the conversation skewed by the use of stigmatizing and accusatory language. Mental health advocates know we don’t use terms like “committed suicide” or state that the person “killed themselves.” We promote the use of the phrase “death by suicide.”

2. Implying physical disability is so terrible, no one would want to live while disabled. 

It seems people are focused on Robin Williams having DLB because it’s dementia with Parkinson’s, meaning you lose functioning of your body as well as your mind. It’s also a dementia that often comes with hallucinations. For some reason, our culture sees loss of physical ability as one of the worst things and assumes, of course, no one would want to live like that — and death by suicide is justified. This is so wrong. By promoting this idea, we’re essentially saying people with physical disabilities have less worth and dignity. Some of us may see significant loss of ability (mental and/or physical) as something we would not want to live with. That is a personal belief. But we cannot promote the assumption that “obviously” anyone who is disabled “enough” would want an end to their life. This also raises the issue of how to help a disabled person who has a mental illness and may have suicidal ideations. If we believe no one would want to live with a disability, then will doctors intervene if a disabled person is suicidal?

3. Claiming mental illness is not a “worthy enough” illness.

I’m so tired of people not understanding mental illness as a real illness and trying to cover it up with another, more “worthy” illness. This is why people make the, “Now I understand” comments about this story. Robin Williams was struggling with mental illness and addiction his whole life. I wish we had more compassion for him during those dark times, rather than only having compassion for him after death or when it’s revealed he had a “worthy” illness, such as DLB. Since my mom lived with DLB and I live with mental illness, I could not imagine saying death by suicide due to her illness was more “worthy” and “acceptable” than due to my illness. Both illnesses are devastating and come with a risk of death by suicide.

4. Implying anyone with dementia would not want to live.

Dementia is a complex illness which manifests differently in every person. When we talk about it in such a blanket way and promote misinformation about it, we perpetuate the idea that dementia is so horrible, no one would want to live with it. My mom was diagnosed with dementia at about the same age as Robin and had eight really great years until she was confined to a bed. Even then, she didn’t have the scary quality of life I’ve seen dramatized in news stories about people with dementia. When we frame dementia as a reason for death by suicide, we’re sending a message to people living with dementia that their life will be so bad, suicide might be understandable. That is devastatingly sad. I know so many people living well with dementia, and I hate that they will see dementia framed in this way.

5. Perpetuating shame of death by suicide.

I feel terrible for those with suicidal ideations or suicide attempt survivors who see this conversation about Robin Williams and dementia. What are we supposed to think about ourselves? That we need to be “sicker” or we need to suffer more in the world’s eyes in order to have suicide be part of our illness and part of our life story? It’s like we can’t talk about suicide unless we have an illness someone else deems “bad enough.” It seems like this interview is framed to show Robin didn’t die by suicide, but by DLB. Death by suicide was the acute cause of death — DLB was the underling illness.

I live every day seeing the impact of DLB and mental illness. I know death by suicide can be a result of both illnesses. I know both my mom and I have said “I want to die” due to our illnesses. I also know it would be wrong for anyone to look at me and my mom and deem one of us had a “good reason” to die by suicide and the other did not.

What we really need is more awareness of the different illnesses of the brain. We need to focus on quality of life, worth and dignity. We need to stop shaming people with mental illness and scaring people with dementia.

Throughout our lives, my mom and I both wanted the same thing — a life of meaning and purpose, with dignity and respect. We can work to make that a reality for people with all kinds of brain illnesses — even dementia and mental illness. When we do that, we can decrease the shame around both of these illnesses and increase the likelihood of a better quality of life and more compassionate care for all.

A version of this post originally appeared on Rev. Katie’s blog. 

To learn more about dementia, you can check out Rev. Katie’s book, Creative Connections in Dementia Care™: Engaging Activities to Enhance Communication

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.