There is a saying among disabled people that goes: "If it hurts, we know we're alive". Like most humans our natural instinct is not merely to survive but to flourish. For this we need assistance to live, not die. Disabled people suffer so much neglect, isolation, exclusion and discrimination that some volunteer for euthanasia. But this is not the only way to address suffering. What about assistance to live?
When healthy people are suicidal, the usual response is to try to help them live better lives, not provide a solution which encourages them to die. It seems that disabled people are the only people who can be suicidal and mentally competent at the same time. Help offered to people with suicidal feelings is often inadequate. But however strapped for cash the NHS is, the one thing they won't do is offer to finish the job off properly.
This is why people like me are so concerned about the Director of Public Prosecution's new guidelines on assisted suicide. On the surface, they look like an attempt to equalise the legislation – they move the focus on to the motivations of the assistant, widen up who may assist in a suicide and pay particular attention to whether an assistant's actions were "compassionate". But what is the definition of compassion?
Killing someone isn't usually seen as compassionate, except when we're talking about sick people, because we're subject to the social belief that it is better to be dead than disabled. I wonder if the DPP's insistence that a victim must have "reached a voluntary, clear, settled and informed decision to commit suicide" will also apply to a physically healthy person who has expressed a desire to end their life? If not, this guidance remains as discriminatory as before.
Most people who have stared death in the face will tell you how much they value their life. Humans are resilient, but most of us do not realise that until our capacity is tested. That is why people who have severe illnesses need to be the experts informing discussions relating to end-of-life care.
Despite the slow march towards equal rights for disabled people and those with long-term illnesses, the Government would prefer to ration healthcare, and social services are underfunded to the point that they now refuse support to anyone not in serious crisis. Meanwhile, the media is misleading the public that disabled people's lives are terrible. They rarely consider the reasons, other than our impairments, why we might be having such a bad time. Social isolation, abuse, lack of equipment, being dumped in institutions, lack of opportunity, poor healthcare, insufficient support and inaccessible housing contribute to making people feel their lives are not worth living.
I believe the root of public opinion is fear of suffering, and I agree that nobody wants to suffer. So why are we not looking for solutions that do not involve people having to die? The concept of liberating people from suffering by offering them fatal medication is more like an idea for a horror movie than a social policy.
Clair Lewis is a disabled activist with the Direct Action Network
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