Unequal treatment

The NHS often helps to maintain or even spread disablist attitudes, says Andy Rickell

If we intend to banish disablism, we must tackle the beliefs that keep it going. As disablism is a deep-seated issue, we have to challenge some powerful interests.

The ultimate origin of disablist behaviour and institutional disablism is disablist attitudes – the belief that people with impairments are second-class citizens, not fully human, and therefore not entitled to equal treatment with unimpaired people.

Two key propagators of these attitudes are our current health services and the media. This time, let’s think about health services. The NHS: a very powerful interest indeed!

I believe that medical professionals genuinely seek to do their best, with dedication, skill, and a belief that they support people’s human rights.

However, their operating environment at least perpetuates disablism, and may add to it.

The high level of medical understanding of the professional, and their role as gatekeeper to services, compared to the relative ignorance of the disabled person, creates a power imbalance in the relationship, which renders the disabled person unnecessarily dependent on the professional’s judgement. This must be equalised, by supporting disabled people so that we know much more about our conditions and their management, and also by professionals listening to us as experts on our needs. Disabled people need “choice and control” over our health and any medical interventions too.

Secondly, society requires major judgements by medical professionals in decisions on “quality of life” – from providing life-saving treatment, to decisions about rationed resources, including equipment and therapy. Anecdotal evidence from disabled people suggests serious underestimation of quality of life for disabled people by professionals. This affects treatment decisions, and the negative attitudes that professionals impart to disabled people and their families. Medical professionals’ training must include an understanding of the positive reality of disabled people’s lives.

Thirdly, there is an emphasis on surgical and drug interven­tions rather than therapeu­tic ones, and a low priority given to supporting rapid rehabilitation. We need a model which meets the holistic health needs of the disabled person for getting on with their life rather than treating them as malfunc­tioning equipment that can be sidelined, and which also recognises the role that self-image, self-identity and self-esteem play in a disabled person’s overall health.

Finally, there is the belief that medical advance is the ultimate answer to eradicating impairment, in the extreme reflected by the geneticist who said: “One day, it will be a sin to have a disabled baby.” Not in my Bible. What is fascinating about this proposal is both the value judgment, which is superstitious and unbiblical, and its unscientific approach to impairment. Some impairment is indeed susceptible to ethical medical advance – great, let’s encourage it. But some impairment is environ­mental, eg injury, emotional distress; some is due to human mortality, eg bodily wear and tear, and some can only be eradicated by destroying the person, eg genetic conditions.

To overturn these disablist attitudes, we need an NHS which positively and publicly champions the right to life in all its fullness for all citizens, and uses its power to educate the public in an understanding of health and well-being that acknowledges impairment as a normal part of a healthy society’s communal life.

• Andy Rickell is an executive director at Scope