The Simon Heng Column

This month, the government announced that, with the Disability
Rights Commission, it would put in place a new framework for
Partnership Action on Disability so that disabled people would
receive fair treatment from the NHS.

When I became disabled 10 years ago, I assumed that the medical
profession and hospitals would be experts at dealing with disabled
people. In my (all too wide) experience, specialist units such as
neurosciences and rehabilitation have excelled in treating people
with severe difficulties like me. Going into hospital for “usual”
procedures is a different matter. Even X-rays and endoscopies are a
major headache: the staff don’t seem to have any training in
dealing with disabilities, let alone have access to the right
equipment. Attitudes towards disabled patients can still be at the
“Does he take sugar?” level.

Although this may seem alarming in itself, there is an even more
sinister side. Jane Campbell, of the Social Care Institute of
Excellence, has written in Community Care about the
doctors who wrote “do not resuscitate” on her notes, assuming that,
as she had a disability, her quality of life was not worth saving
if her condition became critical.

The same is true of “Nadia”, an 11 year old with severe learning
difficulties, whose parents are battling in the High Court to
ensure that she gets fair treatment if she becomes ill. Apparently,
one of the hospital doctors pointed out that ventilators cost
£1,000 a night, so was it worth using one on their daughter?
I’m actually scared of having to go to hospital for a medical
emergency.

There are too many similar cases for these to be dismissed as
isolated incidents. It would seem that, for many years, the medical
profession has been making judgements about the value and quality
of disabled people’s lives.

Eugenics by another name? Possibly. Unfair treatment? Definitely. I
can’t think of a better argument for the new buzzword – disablism:
discrimination on the basis of disability. Let’s hope that the new
framework is thorough enough to cover situations like this.