Disabled people need help to live, not die | Penny Pepper

I am terrified by Lord Falconer’s assisted dying bill – and so are the doctors who would have to act as suicide judges

I tried to commit suicide when I was 19. How tragic, you might say, so young and so unhappy. Yet if I tell you I’ve had a chronic illness since early childhood that is known for excruciating pain, for causing immobility and secondary – sometimes life-threatening – conditions, does that change your view of my suicide attempt?

I was unhappy and badly needed mental health support to treat depression. Sad to say that the standard response was to link my illness and disability automatically to my depression – and my “understandable” suicide attempt. There is a link, but not the one perceived by mainstream thought, medical or otherwise. I was stuck in an isolated dead-end existence within the family home, and as I wrote in the Guardian recently my mother was my only carer.

It felt like there was no chance of escape from a pointless existence; frustration dragged my depression into a downward spiral and I attempted suicide. I was in despair with barriers, with limits on personal freedom, and lack of independence – issues that can be alleviated by proper social care and the adaptation of physical boundaries.

Pain was, and is, a constant. But for the rest of my life I want to experience, to feel and to create as much as I can. I believe I am as valuable, with all my flaws and contradictions, as any other average human being. Yet the bill to legalise assisted dying – to be debated in the Lords on Friday – puts us on a dangerous road of devaluing disabled people. It frightens many; it frightens me.

Perhaps I’m overreacting. After all, much is made of the fact that Lord Falconer’s bill is only concerned with relieving the suffering of the terminally ill, people with less than six months to live – allowing doctors to assist in the individual’s death: an act of compassion to bring a comfortable death. Yet the media is already muddling the issue. In 10 years not a single person fronting the campaign for assisted suicide has been terminally ill with six months to live – but they have all been disabled.

We all want a comfortable death, don’t we? The velvet pillow moment, loved ones present at our bedside as we slip away peacefully. Yet surely it cannot be that the only comfortable death is a medically assisted suicide? I say assisted suicide, because that is what it is: a medic supporting an individual to take their own life.

Since the Death with Dignity Act in 1997 in Oregon, doctors have been able to legally assist patients with suicide. But it is interesting to note the results of a poll on the act: the main reasons for people using doctor-supported assisted suicide pan out as loss of autonomy (93%); decreasing ability to participate in activities that made life enjoyable (88.7%); and loss of dignity (73.2%). Pain and suffering are low on the responses.

Many disabled people – with life-limiting conditions or otherwise – are terrified of losing their social care and becoming “burdens” once more. Cuts to social care are drastic and the independent living fund, which enables severely disabled people (such as me) to live in the community is closing in 2016. The underlining of our worthlessness as a drain on the taxpayer seems omnipresent; the link is plain.

How would the enactment of the Falconer bill work if brought to our harassed NHS? The possibility for abuse threatens to be monstrous. I’ve been in the health and social care system for most of my life. As much as there are good and marvellous people, there are repellent ones: less than perfect families, carers with hidden agendas. The involvement of doctors to help you to kill yourself would make the policing of the act untenable. The leap of medical involvement crosses a line that many of us say is unacceptable and dangerous.

The bill also states that assistance to die will be given when it is seen “that the person … has a clear and settled intention to end their own life which has been reached voluntarily, on an informed basis and without coercion or duress”. Without coercion and duress. Can the two doctors as decreed in the bill – often strangers we see only once for 10 minutes if we’re lucky – truly make such a judgment, unravelling family dynamics that could hide subtle intimidation?

Suicide is legal, and so it should be. No one has been prosecuted for going to Dignitas – and while it remains illegal to assist suicide, legal guidelines allow discretion to protect loved ones involved in providing support. These principles allow for a safety net, and assisted suicide cases are looked at on a case-by-case basis.

We cannot bring hard-pressed NHS doctors into this equation, where the matter will never be examined independently. Much of the UK medical profession does not support such involvement. The British Medical Association is against it, along with the Royal Society of General Practitioners, who say such involvement would “be detrimental to the doctor-patient relationship”.

As an activist I want to rage, rage against the dying of the light, with every beat of my heart. I want assistance to live now; I want decent social care, left alone by government and not subject to cuts; and I want palliative care from doctors doing what the best of them do to the highest degree – helping me to live well.

The Samaritans’ 24-hour helpline is 08457 909090


Penny Pepper

The GuardianTramp

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