Monday 11th November 2024: Eugenics and Euthanasia

Cw: early death and ableism, so which is why you’re getting a picture of all the friends instead of a picture of my face.

Hi everyone,

I hope you’re doing well. This isn’t a happy blog, even if I’m back after a long time. I was going to initially write about how 2 weeks of Covid and 1 week of a devices-free holiday did me the power of good.

I could have also chosen to write about despair, particularly political despair. What the Harris loss means for the rights of neuroqueer people, particularly neuroqueers from minority backgrounds, across the world. I could have spoken about the lies freely spread about the islamophobic riots in Amsterdam and how Dutch people stood up to genocide, despite a brutal crackdown from the police, the media, and even the king taking to twitter.com. I could have spoken about the sheer hypocrisy of hosting COP 29 in yet another petrostate and climate anxiety moving to climate hopelessness. I could have also talked about the Autistic Wellbeing Group and how students are seeing it as a place that is giving them hope already?

However, just before QND on Tuesday, I saw a comrade of mine from the Netherlands post on LinkedIn, the social media despiser’s social media platform (not by choice, but by basic necessity). Neuroelfje is an amazing activist who works in the Dutch language, but they deserve the follows: NeuroElfje | Twitter, Instagram | Linktree

Jopie posted on LinkedIn about their friend Mik van Westerhoven and their mixed feelings of relief and rage. I agree with those feelings. Find them here:

https://www.linkedin.com/posts/jopielouwekooijmans_euthanasie-bij-psychisch-lijden-wat-ik-activity-7259607138170191873-MdjA?utm_source=share&utm_medium=member_desktop

https://linktr.ee/Neuro.elfje

Mik was – since they* passed away last Tuesday – known as the human being behind @actuallyautisticalien and part of the actually autistic ecosystem on social media, particularly on Instagram and Tiktok, though they shut down their social media accounts. For more information on their work, including an article they wrote in English, please look here: @actuallyautisticalien | Linktree Mik had Complex PTSD, an eating disorder and, yes, was autistic.

*Note: I use they/them pronouns to talk about Mik, since they used die/diens/hen/hun in Dutch. That translation does not match exactly, which is what I am trying to be mindful about. Yes, being non-binary is not one thing, especially not across language barriers. I want to respect that.

I didn’t know Mik personally. Therefore, I have reservations about sharing this on my personal website and seeming to “profit” off the death of someone else. However, Mik was an activist and would want their message to be shared more widely. This is why I am writing today’s blog. Their life and their death tells us something vital about how systems in place to allow people to die with dignity can be abused by bad actors and systemic neurochauvinism, against us.

Euthanasia

We, as autistic people, need to talk about the brutality of a system that allows vital healthcare to be taken away from autistic people, due to an institutional and cultural lack of interest in the continuation of our lives. Euthanasia was legalised in the Netherlands in the late 1990s/early 2000s. It was the first country to allow a dignified end to those who chose it, preventing unacceptable suffering. This is a good thing and I remain impressed with my country for this, and the passing of gay marriage in 2001.

I don’t talk a lot about this, because it’s not usually relevant to my work here, but I am a child of a parent who committed suicide when I was twelve. I am, surprising to some perhaps, not against euthanasia or assisted dying. In fact, my life before and after would have been vastly less painful had my father chosen that path. I want to live in a world where people can die of their own choosing, in the way that they feel is right, preventing further suffering.

However, Mik’s decision to go is due to institutional failure and neglect of autistic people, seeing our lives as disposable, sent from pillar to post. There is no support, there is no psychiatric care that is informed by and hopefully delivered by actually autistic people. Not here and certainly not in the Netherlands, where healthcare is privatised and expensive, especially mental health care.

In 2023, I gave an online talk to GP trainees in the Netherlands. It did not go well. Why? Because the trainees were visibly discombobulated by my words and my focus on social issues that we face, as well as the concept of neurodiversity. I was not asked back, obviously. The staff member in contact with me told me the students appreciated my “personal stories” but that my representation of autism “did not line up with their previous learning.”

Of course not. Their previous learning is wrong.

Autism is not a disease. It’s perfectly normal to be autistic, even if we are a minority. The triad of impairments is not genuine science, rejected even by its originators. We also can’t be taught to modify our behaviour to make us normal. We are highly empathetic, deeply involved with the world and, by necessity very creative.

That, however, was what they rejected. It is not anti-science to point out that this particular science was created by people with certain economic imperatives when it was and that we as a community are suffering through those consequences. Science is where a society chooses to pay attention and questions scientists ask themselves are by nature ideological.

I count my blessings that I was allowed to leave, to move to the UK. There was no way I could have continued living in Holland, partly due to the hostility of the psychiatric establishment to the existence of neurodivergent minds. I remember being in a mental health care facility in 2012. There were several people who I would now immediately recognise as neurodivergent, some of whom had come to the end of their treatment. They might be where Mik was at recently, they might have lived, they might not. What saved me personally was that I needed to move to the UK. Only here did I start coming to terms with what a good life for me might look like. In a different world, I might have been in Mik’s position.

Eugenics

So, in essence, isn’t euthanasia the same as eugenics? Absolutely not. Eugenics is an attempt to steer the human race into a certain direction. To breed us like racehorses or lapdogs, selected on the basis of our bodies and our perceived standards of intelligence, whatever that means.

What’s now called euthanasia is not the same as the wilful murder of disabled people, however well-intentioned it may have been at the time – and yes, most of the people involved in the T4 project had the best of intentions, as horrifying as that should seem to people reading now. Euthanasia is just that: assisted dying. A way to go with dignity, love and respect, in a way not otherwise possible, to avoid unnecessary suffering. We should, as disability activists, respect and value the choices of those who choose to die. We shouldn’t shame anyone for wanting to reduce their suffering. In the end, Mik’s passing was calm, loving and dignified. All of the things that their life was never allowed to be. And that makes me seethe with rage.

We live in societies where our lives are considered to be of no or little value. Euthanasia, in a system like this, can be used to rid society of those who do not conform to the whims of capitalism; by choice, by ability or by temperament. This is what’s happened to Mik van Westerhoven and I’m disgusted that the Dutch state allows euthanasia to be used in this fashion, as an excuse for their lack of accessible healthcare. I tried to do something, back in 2023, by giving that talk. I was straight-up ignored. We need to fight this system with all that we’ve got, as brutal, unfair and unmanageable as that often is. We will have to fight, and accept we might very well lose. In the meantime, rest in power Mik van Westerhoven. Share their story. Celebrate their life and their death. But fight the system that snuffed them out before their time.

Assisted dying for psychiatric suffering – what Mik wanted people to know from lived experience

So what can I do? Well, the one thing I can do is translate their video, so that you won’t have to rely on Google Translate. Mik’s message is too important to leave to an algorithm.

I will die soon. I will receive euthanasia for unbearable and untreatable mental suffering. What I want people to know and my request to psychiatrists who want to keep everyone alive is the following.

What I need people to know is that I am not giving up. I have tried every form of treatment, have given everything and fought endlessly. I have taken up every treatment there was. I have tried everything and after 16 years of treatment I am exhausted and broken. Things are only getting worse.

I want people to know that my choice for euthanasia is not a choice to die, so much as a choice to be allowed to leave in a dignified, loving and calm manner of my choosing. This is instead of having to take my own life in other ways. My life is not liveable and there is nothing to be done that can improve it. For me, death is to be the outcome either way. Being terminal due to psychiatric illness exists. I know, because, unfortunately, that describes me.

Note: my choice does not endorse clinicians informing patients that they are out of treatment options within psychiatric care. I do not endorse this. Being at the end of a treatment programme and being capable of receiving further support to improve one’s life should never lead to an end-of-life option. Ever. When the patient is willing and capable, there should always be options. For me, that is no longer possible, because I am exhausted. I have reached the end of my capacities. I lack the energy for further treatments. So much else would have to change before I could live a manageable life that, should I have chosen that way forward, years of further suffering would lie ahead and the chances of death are enormous. This is why I am terminally ill, which is DIFFERENT than a clinician saying one has come to the end of a treatment plan.

I need people to know that if options did remain for me, I would have taken those up immediately. That is because I want to get better. I want to live. But I no longer can. Physically and mentally I no longer have the strength to do so. I need people to know that if I still had options, I would have never got through the monstrously intensive euthanasia screening system.

Euthanasia is not “legally allowed suicide.” Euthanasia is being allowed to pass when suffering has become unbearable, incessant and hopeless. Euthanasia is a way out of inhuman suffering without reasonable alternative treatment options.

For those suffering a terminal physical illness, people are also asked to wait for what will seem like aeons until at some point a new treatment may pop up unexpectedly. But is it humane to ask the same from someone who suffers so deeply, on a daily basis, to the point of unendurability? If every minute is too much for you?

I need people to know that mental suffering is real, that it is brutal, still some people seem to still believe what I go through is just histrionics. Externally it isn’t always visible, but internally someone can be beyond breaking point, critically ill.

I need people to know that unbearable, incessant and hopeless mental suffering is equal to terminal suffering that stems from a physical illness. The one difference being that when someone suffers from a terminal physical illness, the body (usually) gives out first, while with terminal psychiatric suffering, the brain does instead. This is clearly not a choice that an individual can make for themselves.

I need people to know that there is a distinction between psychiatric problems and being mentally ill. I need people to know that becoming a terminal psychiatric patient is possible. I know, I’ve lived it.

Every day is a battle for me, it has been for about 20 years. Not a single treatment has helped. Every treatment available for the disorders I have I have tried. I have tried without help and with help, outside of mainstream mental health provision and within. I have tried everything. Getting better is nowhere in sight. Life is unbearable to me.

There are stories around from people who were still able to find ways to get better and whose euthanasia pathways were then halted. These outcomes are wonderful for those people who can, but not everyone is so lucky.

Recently, the media has been reporting in concerned and concerning terms about euthanasia for mental illness, that it is ‘dangerous.’ In fact, it’s vital that more attention is paid to this topic, so people see it as an option, so they should not be forced to take matters into their own hands. So psychiatrists are less nervous about accepting the wishes of their patients. So not every request is waylaid to the ‘Expertise centre’ (the Dutch national euthanasia oversight board) and people aren’t expected to wait 3 years for an assessment while they are stuck in daily unbearable incessant suffering. Now that’s inhuman.

The numbers for young people requesting euthanasia from psychiatric suffering are rising. This has several reasons. I can tell you personally that the term ‘contagion’ is beyond ridiculous. When a friend of mine was given euthanasia for mental suffering, I had the opposite response. I saw people around me in pain and decided to delay my own application, to fight more. I did not want to hurt anyone. Not long after that, though, I decided to follow through with the euthanasia pathway, because I really couldn’t manage any longer. When your first thought after hearing a friend’s euthanasia request coming through is: ‘I want that too!’, then you really need to talk to a psychologist or psychiatrist. People going into psychiatric care, aspiring to be “as sick as possible” with euthanasia as the end goal is for the birds. Why would you want to be sick? And even if that were to be the case, isn’t that not an expression of someone requiring urgent care and support?

The media have been painting a disturbing picture of psychiatric patients ‘passing on’ desire for assisted dying. Perhaps this may be so for some, but I know more than enough people in psychiatric care who have no inclinations in that way whatsoever. I’m not trying to say that my response was “better” than anyone else’s. I mean that supposed contagion isn’t what drives people to euthanasia. If you apply because you want to present as sick as you possibly can, you will not get through. Euthanasia is as much of a trend as assistance dogs are – meaning, not at all. Yes, there are more assistance dogs nowadays. And no, that’s not because it’s trendy, but because we know more about the value of assistance dogs and how much they bring to the lives of disabled people.

That said, I have met plenty of people in treatment facilities who all had, like myself, already received many different kinds of treatment and all suffered complex combinations of psychiatric ill health. This might lead someone to suspect contagion, but it’s more due to a self-selecting group of people in the same situation. If you have cancer and make friends while in treatment, then several receive assisted dying, is that also contagion? Or is it just because your friends are just as sick as you are?

The numbers are going up because euthanasia is more well-known and people are aware that the possibility exists. The numbers are going up because the number of people with psychiatric ill health is rising. The numbers are going up because for years government policy has created endless waiting lists, for years even, causing people to get sicker while they wait. By the time you can access the treatment you’ve been waiting for, that particular programme is no longer appropriate due to the increased severity of your condition now and you’re expected to join yet another waiting list.

On top of that, when you first apply for an assessment for assisted dying (due to longstanding mental illness) this doesn’t mean you’ll even get through the assessment process and pathway, and even then it might not happen after all. The pathway is incredibly time-intensive and most applicants have to wait for years. If you’re lucky, the process can take several months – and this is the most severe form of daily, incessant, unbearable mental suffering. It’s not something that happens easily. Laws are stringent and no-one gets through on a whim.

My request:

I wish to ask the following of all psychiatrists so opposed to euthanasia due to psychiatric suffering and do not believe in terminal mental illness: listen to the people who are experiencing this, empathise, read up. Even though you believe you (may) have studied this topic during your training, you cannot possibly know what it is like unless you’ve lived it.

I wish to ask all these psychiatrists diametrically opposed to assisted dying for psychiatric suffering, because they believe they are capable of curing everyone and everything: then why don’t you?

I believe everyone has the right to their own views, but request that those people with strong beliefs in one direction will engage in dialogue with terminally mentally ill people and their friends and family. Read up. Walk a mile in their shoes. Without having lived it, how are you to know whether what I do is right or wrong.

To the people with opinions, to the psychiatrists who disagree: don’t listen to your biases over the lived experience of people you haven’t actually listened to. Listen to them. Empathise. I beg you. If I had been able to get better I would have taken the steps to do so, but no-one else seems to know how. There are no more ways out.

I’m terminally ill, and yes, that is possible in psychiatry.

Thank you for reading, Mik

Also, I would appreciate it if you respect my choice. I don’t have time for unasked-for advice about treatments or whatever. Leave that to the professionals. Being terminally ill is not an opinion.

Thank you. ♥️

See you next week. To Mik, rest in power. x