Letter from the Editor (Summer 2009)

How do we value an autistic life, asks newsletter editor Chris Barber.

Here we are again: RCN Congress has finished for another year, summer is upon us, it's the height of the political "silly season" and there is another Ethics Forum newsletter editorial to write. This will be my last editorial, as I have served on the RCN Ethics Forum Steering Committee fairly loyally for the past enjoyable nine years - eight-and-a-half of these as your newsletter editor. It's now time for me to stand down. Ahhh!

During those years as editor, I have touched on many issues of nursing ethics, many with a disability slant. I make no apologies for this: I am a learning disability trained nurse, and stood as such when I was first elected to the steering committee in 2000, and I'm proud of it. Many of you will know that I also have a personal take on disability and nursing ethics, being an informal carer for both my son and my better half. What very few of you will know is that I was recently diagnosed as being "high functioning autistic" myself. In this, I join a long line of well-known reportedly autistic people, including the comedian Peter Sellers, the politician Lord Keith Joseph, the astronomer Sir Patrick Moore and the philosopher Ludwig Wittgenstein.

A few months ago, a news item on autism caught my attention. Research was being undertaken to find a genetic test for autism and autistic spectrum disorders, with the implication that women pregnant with an "autistic foetus" would be offered a termination. Professor Simon Baron-Cohen, one of the big names in autism, gave a radio interview to comment on this research. Baron-Cohen, unsurprisingly, was against such genetic testing on the grounds of disability discrimination, saying that if those who are discovered in-utero to have autism are terminated, then the next generation will be denied their most creative mathematicians, physicists, philosophers and artists. If, as a society and as a profession, we stand back and deny large numbers of people the right to life, the right just to be, on no other grounds than the fact that they are different from the statistical norm, are we truly valuing humanity? Are we truly valuing ourselves as humans? Think about this one.