Not Dead Yet

James Moore writes:

Driving back from a hospital appointment this morning, I found myself feeling a profound sense of relief that had nothing to do with my consultation with the compassionate and skilful doctor who helps me with the management of the chronic neuropathic pain from which I suffer. It came instead from a radio report covering the decision by the High Court to once again turn down a challenge to the law on assisted dying. 

As someone who holds strongly liberal (small L), and strongly secular, views I believe that people should have the right to live their lives as they choose, as long as they don’t harm others by doing so. That being the case, you might very well ask whether that shouldn’t extend to the right to end their lives as they choose, including with medical assistance if necessary. And in an ideal world? Sure. Perhaps we could talk about that.

Unfortunately the world we live in is far from ideal, especially if, like me, you happen to have disabilities. Unfortunately, we happen to live in a society that does not value such people. It discriminates against them, often with the connivance of politicians, and through the utilisation of gaps in the law, or through the failure to enforce what law exists. Try getting on a bus while using a wheelchair if you want an example of the latter. 

With a few notable exceptions, for example those rare individuals with the potential to become elite Paralympic athletes, British society does not value disabled people, or the contributions that they make. Britain is frequently in the habit of treating disabled people not as valued members of society, but instead as burdens or costs. 

No less an institution than the United Nations was moved to describe the situation facing them as “a catastrophe” in a recent report. I could cite numerous examples of ugliness I myself have experienced, my friends have experienced, or that those few disabled people in prominent positions have experienced that have made the news. Google will find you plenty of them.

To be able to live, and to make my pain manageable, I am reliant upon drugs and medical intervention. Because of that a terrifying thought often comes unbidden – what happens if the tap gets turned off? What happens if a Government not known for its compassionate nature says, you know what, you cost too much. But here, you can have some barbiturates if you want. If that sounds extreme, try experiencing life in my shoes.

I have profound sympathy for Noel Conway, the man who brought the legal challenge. He suffers from motor neurone disease and wanted the ability to enlist the help of medical staff to be able to experience a “peaceful and dignified death” when he had less than six months to live. I am aware that even the late Professor Stephen Hawking shifted his position on assisted suicide, arguing in a BBC interview that “to keep someone alive against their wishes is the ultimate indignity” and stating that he would consider assisted suicide were he in “great pain or felt I had nothing more to contribute but was just a burden to those around me”. 

But that comment about being a burden troubles me. It’s very possible that an otherwise more or less happy disabled person could suddenly find themselves in a difficult situation with family or carers, and could, as a result, start to become so convinced that they were a “burden” that they might feel the same way when with the proper support they wouldn’t dream of it. I know how corrosive the feeling of being a “burden” can be, and I am in the fortunate position of having a wonderful family, and a wife who repeatedly refutes that notion. What frustrates her is my reluctance to accept help that might prevent me from injuring myself.

Disability charities are extremely uncomfortable with the issue of assisted dying, and no wonder given what they experience when they talk to our Government, and the attitudes that are displayed by some of our less enlightened parliamentarians and civil servants, not to mention members of the public. Not one of those charities has campaigned for any change to the current legislation. Not Dead Yet, a network of disabled people, produced a brilliant sign for use at a demonstration bearing the legend “Assist Us to Live Not Die”. 

We need to focus on creating a society where people with disabilities can live securely, and do so without being weighed down with guilt. The number of people wanting medical assistance to help them die is actually rather small. The number of disabled people fighting desperate battles to live in the face of official indifference, if not active contempt, is huge. One of the founders of Not Dead Yet, Phil Friend, described a change in the law as “a terrifying prospect for the vast majority of disabled and terminally ill people who work hard towards achieving equality for all”. 

I know how that feels. If you’re living with disabilities, a law to facilitate assisted suicide feels like the thin end of the wedge, the opening up of a crack in the dam that protects us against something very dark. For that reason, I endorse what his group has to say.