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).

Simon Stevens: Assisted suicide is just wrong.

This article was published in the Huffington Post on March 11, 2015.

By Simon Stevens, is an independent disability issues consultant.

You can call it assisted dying, assisted suicide, mercy killings, helping people along or anything else you want, but whatever you call it, I would say it is just wrong.

The debates and pressure to legalise assisting dying has focused on the right to choose how we die, but this is in reality a right afforded to no one as we live in a world where no one knows when they we are going to die.

You may argue that people who commit suicide know when they are going to but few people actually plan to commit suicide as a rational act to take control of their destiny and it is not a form of action that has gained any acceptance within society. I am sure daytime TV will never be offering advice on how to have a good suicide! Instead, suicide and suicidal thoughts come as a possible immediate solution to a period of immense depression or frustration. It is an irrational desire that comes from people not seeing other ways forward.

When a supposedly well or non-disabled person commits suicide, there is shock and horror as people examine the environmental causes that may have led them to suicide, generally concluding the real reasons may probably always be a mystery. If a non-disabled or well person expresses a desire to commit suicide, those they tell are most likely to do everything they have to talk them out of their desire by asking them to think of the positive things in their life.

When a sick or disabled person commits suicide, the rules change. There is an unspoken assumption they had a valid reason to do so with people remarking they are probably better off now. More worrying is families, coroners and the media seem eager to make clear conclusions, particularly that 'stress' caused by their interaction with DWP is a key reason for their suicide, when there could in reality be a whole range of factors. I find this politicisation of what is a tragic event quite sickening and deeply worrying, as it shows deep rooted prejudices toward sick and disabled people.

And when sick and disabled people show a desire to wish to commit suicide, assisted or unassisted, suddenly what is normally perceived as an irrational non-starter caused by depression is reframed as a brave and courage rational decision that is obviously correct given their circumstances. The person's environment, that may be the reason for their despair, is totally ignored as the focus becomes how they supposedly feel about their impairment or illness.

While I can totally understand how people can feel and their desire is clearly genuine, my concern is how those around them, as well as the media and society at large, respond differently to their desire because they are sick or disabled. There is deep rooted prejudices towards sick and disabled people that are not yet openly discussed and are allowed to be celebrated to a degree.

I strongly believe the same deep rooted prejudices that are used to justify assisted suicide are the same prejudices that are in place when the media and other complain about disabled people who are found fit for work in a manner they regard as unfair, and recently the pity for disabled people who are sanctioned in a manner they perceive as unfairly. I am further argue that many sick and disabled people can share these prejudices and they are not exempt just because of their status.

Because these prejudices are framed as compassion, fairness, justice and so on, they are extremely difficult to currently challenge, leaving those of us who see it clearly as being regarded as heretics, criticised for not being compassionate enough! But the inclusion of disabled people is never going to move forward towards something more meaningful until we expose and truly challenge the deep rooted prejudices that exists within most current social policy around sick and disabled people.

Assisted suicide and how it is being framed as an act of compassion is perhaps the crossroads to society deciding what it really thinks about sick and disabled people. If assisted suicide becomes law, it could be the start of a slow and steady 'compassionate' path to a new kind of holocaust for sick and disabled people that we will not realise is happening until it is far too late.

• Simon Stevens: Why I oppose assistd suicide.

Disability leader, Simon Stevens: Why I oppose assisted suicide.

This article was written by Simon Stevens, an independent disability issues consultant and published by the Huffington Post under the title: Give Me The Right to Live , Not Die.

By Simon Stevens, Huffington Post, July 15, 2014

I am one if many disabled people that has been vocal in their opposition to this dangerous legislation, that is likely to be the starting point to the normalisation of 'mercy killings' and a societal pressure upon sick and disabled people to 'do the right' thing. 

The supporters of the bill, all of them who are not disabled or terminally ill, backed by 'Dignity in Dying', who were previously called the Voluntary Euthanasia Society, wish to present a nice clean bill. The killing will be restricted to those who are terminally ill, with less than 6 months, or 183 days, to live, as agreed by two doctors, and have the mental capacity to consent to killing themselves, which the supporters want to make clear is 'kind' assisted dying, not the less publicly accepted assisted suicide, a difference in words that make little difference to its results, premature death. The supporters want to make us believe the bill has nothing to do with disabled people, and that 'we' are in some way immoral for trying to interfere in things that are not our business.

The problem with this clean picture is that it ignores what is in fact a very unclear picture. Firstly, it is extremely hard to separate impairment from terminal illness as they are often interlinked, and in the public's eye, it is all 'needless suffering'. Secondly, no doctor on the planet would be prepared to diagnose anyone in having exactly 183 days left to live since no illness is predictable and someone's journey will be affected by so many factors, including their own attitudes towards their state of being. While some illnesses show their symptoms at this supposedly six month point, others may not.

The key point the supporters are using to win their case is ending 'needless suffering', citing pain and indignity as reasons to die. Suffering, pain and especially indignity is very much in the eye of the beholder and can not be measured. I find the term indignity offensive because it is often used by those who are not disabled or ill to describe how they think they will feel if it happened to them, based on their deep rooted prejudices towards impairment and sickness. You hear people say they rather die than end up having to use incontinence pads or nappies, so what the hell does it say about their opinion of the millions of people around the world perfectly happy wearing them? I wear nappies myself and I talk about 'nappy pride', something I am certainly not alone in. Suffering is a part of what makes us human, and stronger people, and no one has a right to escape it.

And if people want to end 'needless suffering', why just offer a painless suicide to those experiencing 'health suffering'? Why not economic suffering like people in debt or who have lost their job? Why not victims of crime or those who are confused about their sexuality or gender? Why does the bill discriminate those suffering and lack mental capacity, or who are experiencing long term chronic pain who do not have a terminal illness? I am sure if this bill is passed, a second bill will quickly follow to redress these anomalies, bringing the future many disabled people are fearing.

The supporters try to justify the bill by talking about people's 'right' to have 'choice and control' over their death. But many disabled people do not have choice and control over how they live, and yet despite many years of campaigning, it does not receive anywhere near the support or media attention this supposed right has. It is also impossible for anyone to have a free choice without taking into account their environment and the external pressures placed upon them by families and society. If people are not receiving the proper level of health and social care they are entitled to, this is certainly going to have an impact on their decision, which would never be taken at face value if they were not disabled.

I have felt suicidal a few times in my life, each time because I was unhappy with the current situation from my environment, having little to do with my impairments, but each time I was able to resolve the problems causing my unhappiness, bouncing back stronger than ever, making further and amazing contributions to others when I had assumed I completed my time here. Suicide is a long term solution to a short term problem, and people who want to die need proper and appropriate emotional support, whatever their situation, not a prescription of life-removing drugs.

Friday is a test to see how serious the country is in relation to the full inclusion of disabled people as equal citizens, and I hope it passes it by saying no to the bill.