Enough is enough

Most disabled people I know spend much of their time trying to
gain, and keep control of their lives, and to convince other people
that we have lives which are not only worth living but are actually
quite enjoyable and fulfilling.

It seems to me that most of the major injustices perpetrated
against disabled people down the centuries have been based on that
one fundamental misunderstanding. People who do not have a
disability find it almost impossible to imagine that a life without
sight, or hearing, or the same freedom of movement which they have,
can nonetheless be a life to be valued and enjoyed.

What most of the rights movement for disabled people has been
trying to say over recent decades is: “We want the rights of
self-determination which everyone else, in democratic countries at
least, takes for granted, ie the right to decide how we live, where
we live, with whom we live, whether or not we want medical
treatment; and surely an absolutely logical consequence of all this
is the right to end life when we want to.”

Yet this last step is one which many disabled people committed
to fighting for their rights shrink from taking, indeed seem to see
as a fundamental threat to the kind of rights we’ve been talking
about. Of course I understand why. Some severely disabled people
have very strong evidence that they only survived as babies due to
the intervention of an individual doctor or the strongly expressed
belief of parents that they wanted them to survive, often against
powerful advice to the contrary. Such people understandably fear
that the same cavalier attitude might be invoked again as they grow
older.

I also understand why the horrors of the Holocaust and the
apparent reassertion of ideas about eugenics should make people
deeply apprehensive. But this is an issue where, whatever you do,
however you frame the law, you have to take risks. As with most
human problems, there is not a perfect solution.

So it comes down to the question whether we should frame laws
about euthanasia on the basis of potential evil or misguided
behaviour, or whether we should frame them on the basis of how we
believe people should behave, with as many precautions as possible
to try to ensure that they do.

I think we should do the latter. I haven’t fought for the whole
of my life to be able to exercise control over it only to have the
right snatched away from me at the very last moment. I believe
strongly that we must make a law which enables people in control of
their faculties to say, “That is enough! My life is not about
quantity but quality and I now want to end it before everyone,
including me, suffers unnecessarily.”

I felt it was outrageous that someone like Diane Pretty, who had
beyond all reasonable doubt made a conscious and informed decision
with the agreement of her family, could not be allowed to die
peacefully at the time of her choosing. I felt it was equally
obscene that Reginald Crew, who had also made a conscious decision,
had to go to Switzerland, with the threat of prosecution hanging
over his wife, in order to achieve a dignified end.

Of course there must be safeguards, but are we really saying
that we can’t devise a system which will take account of all the
considerations before a life is ended?

I would be the first to agree that such a system should not be
too medically based, or indeed dependent on the view of any one
profession. Clearly such decisions, if it cannot be shown that they
have been full-heartedly taken by the patient themselves, should
involve a range of people, including family and perhaps those who
fight for disabled people’s rights. Consensual agreement would have
to be reached before a decision as serious as ending a life could
be taken.

What is clear to me, with the experience of many programmes
about voluntary euthanasia behind me, is that there is a strong
public wish to be able to make such a decision when the time comes
and that we can’t go on denying it to people on the grounds that
there might be another Adolf Hitler just around the corner or a
bunch of marauding eugenicists just waiting to take over the world.
Frankly, if either of those contingencies proves to be the case it
will take more than the rule of law to save us.

Peter White is the BBC’s disability affairs
correspondent.