Yesterday I read a policy statement about assisted suicide from the leading disability charity in England. it was heartbreaking to read it and I stopped after a few paragraphs. I made a snap response which I sent to them and published on this blog.
On reflection I still agree with what I had to say but I need to talk about the counter argument. the legalisation of assisted suicide will result in a lot of use of this mercy by disabled people.
I believe the disabled are an important part of society. I do believe in the principle of the integrity of disability which venerates the diversity which disabled people represent. I’m against the normalising practices used on people with psychosocial disabilities by doctors because they assume that normalisation is the only goal.
I believe that human diversity has a value and one of the crimes against humanity which are perpetrated by psychiatry is that it attempts to destroy this psychodiversty.
A couple of years ago I was obsessed with the ethics of genetic selection and invitro fertilisation. this is a technology which is in use today by parents who can afford it. embryoes are harvested and screened for certain traits so parents can have a more perfect child. this is used to screen for genetic diseases but it’s also been used to screen for female embryoes and for them to be rejected by parents who want male offspring.
This technology is rarely used but it’s being used more often. it comes with a huge ethical dilemma though. the dilemma is that it will lead to the end of certain disabilities that people are born with. to anyone outside the fringes of the disability sector this sounds like a good thing but if disabled people are valued for their diversity then this technology will eliminate a lot of this diversity.
Let me briefly talk about the integrity of disability principle. this is based on valuing the difference which disabled people bring to the human race. it is why blind parents would choose to bear a blind child even though embryonic screening and implantation could prevent their offspring from being born blind. it’s why blind people would choose not to use sight restoring technology. this is because they believe that their disability is an essential part of human diversity and to take it away is unacceptable. this principle is integral to the social model of disability.
I did my best to understand genetics to find a scientific answer to this ethical quandary. what genetic definition is there of a normal human being and what’s definitely a genetic disease instead of natural human diversity. Unfortunately I couldn’t find any black and white scientific answer.
Let me try and explain this. imagine a monkey genetic scientist. one day they come across a monkey without a tail. this monkey lacks the balance and agility of normal apes because it lacks a tail. a monkey without a tail is a disabled monkey. the monkey genetic scientist can either see this as a disease which must be prevented or they can percieve the disability as something which is a natural part of the wide diversity of all apes. Neither of these options is, from my basic understanding of genetics, a scientific answer. it is a profoundly ethical question.
I tried hard to find a definite scientific answer like I discovered about psychiatry. psychiatry is unscientific at its core because it believes that psychodiversty is an illness. it’s a system used to enforce temporary social and cultural norms rather than being either about genuine diseases or anything scientific.
I couldn’t find the same clarity about the question of disability and genetic ethics. my heart believed that the disabled are a vital part of human diversity. my heart believed in the integrity of disability and so dictated that genetic embryo screening and implantation was a bad thing.
the use of genetic screening to produce a perfect child is based on contemporary temporary norms of society and culture. in the past there are examples of biological differences being used to pejoratise natural human difference and even call natural human biodiversity an illness. here I’m thinking about the diagnosis of negritude which was invented by a doctor a few centuries ago to medicalise black skin colour. black skin colour is a biological difference which, in a time in history where white skin was the norm and black skinned people were slaves, could be perceived as a disease because of a biological difference. Obviously this biological difference is a genetic difference.
Unfortunately my heart was not so black and white. I spent a lot of time reflecting on this issue and my heart won out but for the wrong thing. the life which disabled people have to live is awful. the suffering was, for me, the important thing. while the integrity of disability is lofty goal the reality is that disabled people suffer much more than average people. of course there are some disabled people who can live with their disability and not suffer but most disabled people suffer more than those who aren’t disabled.
It’s the evidence I have from my life. I wish I’d never been born because my life is full of so much suffering. I firmly believe in the value of the disabled and I believe in diversity as a higher goal. I believe that the problem of disability is caused by a dysfunctional society which demands conformity instead of worshiping diversity. I even value pain and misery but I would only willing be part of someone else’s suffering in my darkest hours.
Disabled people suffer so much adversity. they suffer poverty, discrimination and very poor quality of life. they have fewer life chances and can’t have any ambition. they suffer so much. too much. as have I.
In a perfect world none of this would happen but it’s an awful world made awful by an awful human race. the higher goal of respect for all diversity is very important but if the goal is achieved by forcing disabled people to suffer then, in the end, I couldn’t support it or fight for it.
The higher goal is still important to me but I had to give up on fighting against the use of genetic technology being used to eradicate disability because any victory would force disabled children and adults to endure more suffering.
Ultimately I’m saying that it’s better to never be born than be born disabled. it’s a personal belief but it is pivotal to my beliefs about assisted suicide and it’s about what I want for myself.
I wish I was never born because I’d have never gone through so much suffering. I wish I was dead now because I’d be saved from so much suffering.