Apr 20, 2002
The Guardian - United Kingdom
BY HILARY FREEMAN
I will let you into a secret: the President of the United States has multiple sclerosis. OK, not the real president, but the fictional one in TV series
The West Wing (though some might say Martin Sheen would do a far better job). For those of you who aren't fans, this privileged information was revealed in strict confidence by the president's wife to his surgeon, before he underwent surgery to remove a bullet.
The president's health status is known by only a handful of people (plus, of course, West Wing fans and now Rise readers) - the implication being that he could not remain in office if the news leaked out.
While The West Wing is fictional, this storyline has a lot to say about the way illness and disability are viewed in the real world. It's not inconceivable that George Bush or Tony Blair might have a chronic condition which is kept secret from the public. After all, there were rumours of Ronald Reagan's Alzheimer's for many years before it was confirmed.
Would it be in our interest to know? Would illness or disability really affect a politician's ability to do his/her job? And why, with the exception of David Blunkett, are there no high profile disabled people in Westminster.
For those of us without pretensions to power, the same questions are just as pertinent. Not all 'disabilities' are immediately apparent. You can't hide the fact that you're blind or in a wheelchair, but conditions like MS, diabetes or mental health problems are often invisible.
Should you reveal your health status to an employer, when it might prevent you getting - or keeping - a job? Do you have to tell them why, for example, you took three days off sick last month? Is it your employer's right to know?
Attempting to answer these questions opens up a huge can of worms. Lawrence Wilson, director of careers and student development at Canterbury Christchurch University College, says he would always advise an applicant or employee to give thorough and truthful information regarding a medical condition.
However, he admits that being upfront can impede a candidate's chances. "When we place students in work experience we don't mention any disability. When we did disclose it up front we found it very hard to place people - and almost impossible to prove discrimination."
The Disability Discrimination Act (DDA) was instituted to ensure that people with disabilities were not treated unfairly. The problem is, it provides no protection unless an employer is notified about your disability. What's more, under current definitions, only those with long term (at least 12 months) disabilities affecting their ability to carry out normal day-to-day activities are covered, meaning that many people are left unprotected.
Diane Sinclair, lead adviser on public policy to the Chartered Institute of Personnel and Development, says this is a very grey area of the law. "The draft data protection code appears to imply that employers are not entitled to information unless the employer has to meet their statutory duty - such as making reasonable adjustments under the DDA.
"While, strictly and technically speaking, you may not be obliged to give that information, in many cases it might be advantageous. The law needs clarification."
It seems that you're damned if you do tell and damned if you don't. Nick O'Brien, director of legal services for the Disability Rights Commission, says a failure to be frank with your employer can create problems if your condition later affects your ability to do your job - and may put you in breach of contract. "There is a tension between what the DDA envisages would be a sympathetic response by an employer and the practical risks of disclosure," he says. As anybody who has a disability or chronic condition knows, the stigma may be as much of a problem as the symptoms. Irrespective of your ability to do your job or any practical considerations, disclosing a disability will almost inevitably affect the way others perceive you.
"People with a chronic illness feel guilty and worry that they'll let other people down," says Sukie Simpson, an MS Society national trainer, who runs courses on employment and disability issues. "They don't want their employer or colleagues to look at them differently. I lived in a secret world for eight years, telling nobody about my MS.
"Part of the reason was that I didn't want to be stuck with the MS label,
to become 'Sukie with MS' as opposed to just 'Sukie'. I didn't want special
treatment. Now I find it's better to be upfront, but I fully understand
why other people don't want to be."
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