Simon Stevens: Hospitals, eugenics and assisted suicide.

This article was written and published by Simon Stevens, disability consultant and activist, on January 2, 2020.

As an internationally recognised disability consultant, trainer and most importantly, activist, I have always strongly opposed all forms of eugenics.

In 1995, aged 21, I was endlessly watching about parents wanting to kill their young son with cerebral palsy and in frustration I rang the news service, ITN, demanding they interview me, and they did! So that evening the UK saw a young drooling spastic putting his foot down on an issue he remains passionate about.

I oppose infant euthanasia or ‘mercy killings’ as everyone has a place and purpose that has to be valued as it may be unpredictable in what is achieved.

I find the idea of someone with an impairment label who remains healthy requesting that state assists them on a date they chose to commit suicide as a selfish and immoral act. Dignitas in Switzerland is no better than a Nazi gas chamber.

Where my views become grey is in terms of true end of life care. I was always for ‘do not resuscitate’ until I understood the damage it can cause when I sat on a research committee.

End of life means to me people who are facing death where there is no hope of recovery. I believe in his situation, as activists, we should be respectful.

Background

I am 45 and have significant cerebral palsy that affects all my life, specifically my speech and mobility. I also have mild bipolar, nerve pain, asthma and likely stuff I forgotten.

My curse is being hyper intelligent in a spastic body. Imagine thinking like Sherlock Holmes and looking like you have severe learning difficulties. My master weapon is my words in emails and articles which I call my art.

I have been a disability consultant, trainer and activist most of my life, something that has been natural to me. I remain amazed at what I have achieved and the opportunities I had, like this article. But my best achievements have been helping others in small ways no one sees.

My highs have been matched with my lows. Abusive parents, bullying at normal school, periods of depression and very ill health.

At 45, in a body doctors do not understand, my health, which has included 2 times in critical care in 2019 with two comas, has led me to reflect.

Meeting Death

In this section, I am going to discuss death as a metaphoric man.

I first met death during my birth due to brain damage from a lack of oxygen. In another era I could easily be still born. The doctors told my mother I would only last 3 days or be a ‘cabbage’, yet here I am at 45 as someone who considered inspiring.

The second time I met death was when I was 33 when I had the symptoms of Gullian Barre Syndrome. Due to my cerebral palsy, which can a varied in severity for each person, it took a few weeks to understand, when I was now paralysed from the navel it was taken seriously, as I demanded the paramedics take me to hospital despite their protests.

When the appropriate doctor saw me, her jaw dropped as she understood the severity. That night I was constantly monitored by a nurse as I was administered life-saving medicine while death watched in the corner. It took 2 more weeks in hospital and six months intensive physio-terrorism until I was restored to myself as a drooling spastic.

I always understood as someone with now complex health issues that my lifespan would be shorter.

I do not fear death as I lived so well. I value the opportunities I had and the norms I have broke.

At 45, and during the past year, my health has involved talking to death I am unsure what is ahead.

I feel death has now confirmed when and how I will die and that’s fine because I really lived. I know he will never disclose the details to me, and I find my survival this year interesting.

I feel it is wrong to try to shorten or prolong your life from what death has in mind. As someone that has been close to death too many times and did not know until 2 weeks later when my personal assistant told me that I was in a 11 day coma followed by a 2 day coma, I remain confused to how I survived.

Hospitals

So now, we discuss the heart of the matter.

I will discuss my experiences of UK hospitals although I have been unwell in Nigeria (my first overnight admission due to gastroenteritis aged 20 and yes, wtf) and Prague (just food poisoning).

In recent years my visits have been more frequent and more worrying. My chest is constantly impaired although it is hit and miss as to how hospital treats it. One time it could result in a coma and intensive therapy, another time I am told at 4 am clinging on the trolley trying not to wet myself, knowing asking someone for help as ‘in a minute’ pointless, to go home.

Hospitals are the worst place to be unwell, which is ironic. The first problem is the paramedics refuse to take my manual wheelchair, let alone my electric chair, forcing me to bed bound and by default double incontinent which is unpleasant when staff have not earned your trust have to change you.

I find hospital a harsh environment where politeness is the only form of control I have to manage my situation as someone assumed to lack intelligence, any hostile behaviour will mean labels are placed on me. I need to just lie here and take mental pictures for the email complaint I will write when I am safely in my own home. I often stare at people quietly thinking to myself they have no idea what mistakes they have made and who they are addressing.

If you think as one friend recently put ‘you are the toughest person I know’, hospital must be hard work for different people with different situations. For myself, nappies/diapers/pads are a normality and employing personal assistants for 27 years allows me to accept a lack of privacy. For others, it will be the first time they have to experience such difficulties.

Therefore, their experiences or fears of hospitals may attract them to assisted dying to avoid the humiliation to themselves and their families. I have been in situations where a stiff upper lip was needed as four nurses were needed to change my dirty pad.

Summary

As activists, we should not berate those individuals asking for assisted suicide as they are often being used by specific charities to promote the cause. On the other hand. I am against senior disabled activists who claim to support our existence but reject a government committed who believe disabled people can make a contribution in society, openly preferring we were left on the scrapheap while the left wing organisations demanding to represent us drink champagne funded by the government.

It is interesting that during the last time the parliament had a vote on assisted suicide Cameron’s Conservative government’s cabinet, who many activists saw as the bad guys, were instructed to oppose the bill on a free vote. I was pleased my Labour local MP came and talked to me in a lobby (supposedly part of the good guys) at Parliament House until he refused to look at me in the face and tell me I had a right to exist. It still hurts as it was a simple request.

I leave this complex and personal article with two requests.

Firstly, lets accept everyone has a right to live and be fully contributing citizens regardless of their background or abilities. We need to focus on inclusion and accessibility in all aspects of society instead of rights and entitlements that are label based. Everyone deserves to have their personal needs and outcomes supported appropriately as their life changes to help avoid the frustrations that lead to suicidal desires.

Secondly, we need to all work together to make hospitals friendly and safer places that no one fears. This is a part of understanding their always forthcoming death and own it, without trying to bow out from the date set by a higher power planned.

I have felt suicidal a few times due to my environment at those times. While it may be strange to some, I don’t want to be ‘cured’ as it would be a distressing event where my identity would be lost, that may take months or years to recover from.

I hope my rumblings offers a very personal experience of eugenics to contribute to the discussions needed.

• Other articles by Simon Stevens. (Link).