Category Archives: death

Can we please have a conversation on this?

Ok, this is getting written just minutes before I am posting it, so this will probably be pretty rough. Let’s see how this goes.

I follow a woman named Caitlyn Doughty on youtube and on her blog. She is a mortician who talks about death, and grief, and burial practices, etc. She wants people to become more connected to death and grief and such, and is generally not in favor of how our current society generally tries to avoid such things. This is a really rough explanation, but I hope I’m getting the idea across. I really like her youtube series Ask A Mortician and generally support her ideals.

Now, there’s one thing in particular I want to focus on here. On her blog, she is talking about an “End of Life Option Act” currently in debate in California. She is strongly in favor of it, believing that people who are terminally ill should have the option to request medication to peacefully end their lives. Honestly, I can see her point. I would even go so far as to say I support the idea.

Only there’s another side to this. A disability side. A side where doctors (and others) will take it upon themselves to decide whether or not a severely disabled person’s life is worth living. This is a very dangerous and Not OK thing (and there are links out there about it; I’m sorry I don’t have any on hand right now). So in disability communities, often people are absolutely against Death With Dignity legislation, because of how it could easily be abused.

What I think needs to happen is for these two groups to have a conversation. Those who are in favor of things like the End of Life Option Act need to sit down and listen to the concerns of disabled individuals and find ways to address them. The concerns of the disability community are serious and entirely valid, and deserve to be heard.

Which is why, way back in February, I decided to give it a try. I went ahead and emailed Caitlyn via the email address given for Ask A Mortician on her website. This is what I emailed:

Hello. I am a big fan of your work, your book, your youtube channel, and your message of death positivity in general.
You recently posted a link to your facebook page talking about a landmark decision in Canada to allow two women to “die with dignity.” I support such legislation and am a big believer in people being able to take charge of their own deaths.
However, I also run in some circles that are strongly against such legislation. As such, I have a serious question for you. I know you cannot answer individual mail anymore, but I hope it is at least something you are keeping in mind as you do your work.
I am autistic, and am at least somewhat aware of disability issues. One of those issues is the extremely serious problem of doctors believing that disabled lives are not worth living, and doing things like pushing disabled people to not undergo life-saving treatment, or deliberately giving needed treatment so slowly that it does not do any good. One of the responses to this problem is to be against “death with dignity” legislation, under the idea that there is absolutely no way to enact this without leaving it open for abuse by doctors and caregivers of the severely disabled.
I like to believe that there is a way to cover both of these issues. So what I want to know is – as a proponent of death with dignity and such, how are you taking into account the other side of the coin, with the current and horrific problem of people in positions of power already concluding that disabled lives are not worth living, despite the fact that many of those disabled people feel very much so that their lives ARE worth living? What do you think is the best way to prevent abuse of “death with dignity” laws or rulings in the future?
Thank you
Andraya
Now, I knew getting a reply was unlikely. I’m sure she’s very busy with her projects and what’s going on in her life. However, I still found myself hoping that she would see this as a significant enough issue to address. That there would be some acknowledgement from her on how important it is to never decide for someone else whether or not their life is worth living. But, I suppose unsurprisingly, there has been nothing at all. And now she’s seeking support for this End of Life Option Act in California, and all I feel is sadness that the death with dignity people won’t bother to have a conversation with us.
As it is, I don’t think I can fully support death with dignity anymore. At least not until we can have this conversation that we really need to have, addressing the very real concerns regarding possible abuse by doctors. Being heard is important, and it hurts when it seems the concerns of disability activists are seen as irrelevant.
UPDATE: Not long after putting this post up, Order of the Good Death contacted me by email! It was mostly informational, adding some details that weren’t in the blog post about safeguards and such that exist to hopefully prevent abuse. Apparently that is also why they want to send it through the legislature rather than have it go by a ballot – those safeguards would probably be dropped if it went to a ballot measure. So these are the points that Order of the Good Death made regarding safeguards:
  • It allows only qualified, terminally ill and mentally competent adults to request and obtain a prescription from their physician for medication that the patient can self-administer to bring about a peaceful and humane death.  Two physicians must confirm the prognosis is terminal.
  • It requires two witnesses to attest that the request is voluntary.
  • It protects physicians from civil or criminal liability, and from professional disciplinary action, if they fulfill an eligible  individual’s request. Participation by doctors is fully voluntary.
  • It provides safeguards against any coercion of patients: It establishes felony penalties for coercing or forging a request; and it honors a patient’s right to rescind the request.

That the medication is to be self-administered is, I think, the point that I find the most important. I do not believe even these measures completely prevent possible abuse, but it does drastically reduce it.

Plus, I am both surprised and pleased that I was contacted at all. That’s pretty cool.

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Being Like Me

Image is of a polio ward full of iron lungs, 1953

I am autistic. On the autism spectrum. An apie. Has Asperger’s. Pick your wordage.

There is an ongoing debate that Will. Not. Die. regarding whether or not vaccines cause autism. The usual response to the anti-vaxxers is that there is no evidence that this is the case, and studies indicating that vaccines do not, in fact, case autism. There there was that video by Penn & Teller showing probabilities in a very visual way, basically saying that the risks associated with not vaccinating are far higher than the risk of vaccinating, even IF vaccines do cause autism.

Thing is, both of these responses are ignoring one key piece. A piece that is, from my perspective, absolutely and completely vital. It is taking the argument on the anti-vaxxers terms, not questioning their implicit assumptions, and that is dangerous. We MUST call out implicit assumptions, and challenge them if necessary.

The implicit assumption here, rarely stated explicitly but present in every “vaccines cause autism!” argument is that it is better to die from a preventable illness than it is to be autistic.

It is better to be dead than to be like me, according to these people.

And you know what? There have been times where I actually believed that. I thought that yeah, being dead would be better. And that is so, so dangerous. Is that the implicit message we want to send to autistic people, of any age? Because when we fail to challenge that implicit belief, that understatement that is so easy to overlook in favor of arguing whether or not vaccines really do cause autism, that is the message we are sending. That yeah, it’s better to be dead that to be autistic, we just need to know whether or not vaccines are involved here.

If it were proved that yeah, vaccines cause autism, would that make refusing to vaccinate ok? Because when we exclusive focus our argument on that, to the exclusion of “it’s ok to be me” which yes, is totally an important part of this discussion, we are still saying that death is preferable to autism.

Let’s not send that message to ourselves, our children, our community, or ANYONE. Being like me is most definitely not worse than being dead. If I had a choice between being autistic, and being neurotypical but unprotected against measles, mumps, rubella, hepatitis B, polio, diphtheria, tetanus, pertussis (whooping cough), HiB disease, and chickenpox, I would pick autistic any day.

Being like me is challenging and frustrating and sometimes painful, and it is also wonderful and interesting and ok.

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Thoughts on Death

So I have a cat who is dying.

Or at least, who has cancer, is clearly not doing well, and will probably die sooner rather than later. Part of my dealing with this is doing reading on end-of-life decisions for pets, which is leading to a lot of thoughts of death and dying in general.

See, my thoughts on what to do as Genzi gets sicker are directly informed by my beliefs on death in general. I imagine if I tried to talk about it someone would say “oh, but he’s a cat. that’s different.” Only for me, it really isn’t different. Or at least, it’s only a little bit different. In any case, the thoughts are becoming intertwined.

Which means thoughts on disability and euthanasia are coming to mind quite strongly. This is a current and serious issue in the disability community, with lots of people – including vital health-care providers – believing that disabled lives are not worth living. Sometimes to the point of trying to make decisions for disabled people, believing they would be better off dead, when the disabled person would really much rather keep on living.

With a pet, the choice really is in my hands. Legally, socially, and practically. I get to decide when and how he dies, and there are a lot of different opinions out there about how I should make that decision. Some of them, honestly, rather distress me. I was reading a web page (which I lost the link to, but if I find it I’ll put it here) basically saying that if they used to be all playful but have become old and stiff and unwell, then they are no longer living the life they would have wanted and it’s time to euthanize them. Honestly, that so closely echoed what people say about disabled lives that I found it quite alarming. Is this what I am supposed to believe? That an old life is a life that might as well be over?

I cannot ask my cat whether or not he still wants to live. That said, even without the use of words he can show me through his actions how he feels about this living thing. Yes, he’s unwell, but he eats, he cuddles, he purrs when I pet him, and sometimes I even still find him in the backyard, hanging out on opposite sides of the fence with one of the local ferals he seems to have become buddies with. No, he’s not like he was when he was young, but he still seems to be enjoying life and is not ready for it to end.

With most disabled people, though, we CAN ask. Yet so many people do not, or do not listen when told what they don’t care to believe. That is not at all ok.

On a personal level, I find myself torn. While profoundly against how our society treats disabled lives, I am also in favor of allowing people to take charge of their own death. No one can ever decide for a person when it’s time to die, but I do think that a person gets to decide for themselves, provided they do so entirely on their own with no outside pressure. Even if a person cannot communicate, we should never, ever attempt to make that decision for them.

Which, to bring it back around to my cat, means that I do think pet euthanasia is sometimes the right answer. The tricky part is figuring out when and in what circumstances. Luckily for me, the decision does not need to be made yet. Genzi is still enjoying life as an old man, and my job is to help him do so for as long as possible – not to decide that an old, sick life is no life at all, regardless of his feelings on the matter.

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