Do people with epilepsy suffer discrimination in the workplace?

People with epilepsy often encounter a lack of awareness in the workplace. Some don’t even get as far as securing a job because of their condition, says Áilín Quinlan.

WHEN controversial TV personality and newspaper columnist Katie Hopkins declared she wouldn’t hire someone with epilepsy — and had kept her own condition secret for years for the sake of her career —it sent shockwaves across the nation.

Her radio interview with broadcaster Ryan Tubridy lifted the lid on a key issue for the 40,000 Irish people with the condition, about 10,000 of whom are estimated to be children under the age of 16.

Do people with epilepsy — a common but serious neurological condition in which the sufferer tends to have seizures that start in the brain — suffer discrimination in the Irish workplace?

Yes, according to Peter Murphy, CEO of Epilepsy Ireland.

It’s a mix, he says, of blatant workplace discrimination which has resulted in legal proceedings, as well as anecdotes of “negative experiences” in the workplace — people being told, for example, that they could no longer do a particular aspect of their job after disclosing they had epilepsy or had had a seizure in public.

“A person may find that their job changes.

"He or she might be pulled from a public-facing role into a back office”, says Murphy, adding that following a disclosure, or a public seizure, employers can have ‘panic moments’ over the issue of health and safety.

“This is not so much discrimination but an over-reaction which perpetuates stigma because you are treating someone differently after hearing of a medical condition.

However, he points out, a person might have one seizure at work in several years — in effect, a blue moon event.

Is it really necessary, asks Murphy, for that person to be subsequently nudged to a back office role where they don’t come into contact with the public?

“We’ve had various incidents reported to us over the years. Some incidents can be very blatant and unjustified such as needlessly changing a person’s role.”

However, cautions Paul Sharkey, the organisation’s training manager, workplace discrimination can be very difficult to prove:

“I know of a young lab technician who was working with chemicals and with scientific processes.

“He had a seizure and when it was disclosed that he had epilepsy, he was deployed to the very menial task of sticking labels on bottles. Was that discrimination or an employer trying to help?

“That is where it can become very tricky and this is why some people are not disclosing and run the risk of having a seizure in the workplace,” he says.

However, as Murphy points out, there are occupations where a change in the role may be fully justified following a seizure or the disclosure by an employee of a diagnosis of epilepsy.

“For example, if a person’s job involved driving or operating open or dangerous machinery, and they had a seizure, their job would have to change”, he says, emphasising however, that in most cases, there’s no reason why a person with epilepsy cannot do the same job as anyone else.

Epilepsy affects different people in different ways.

For some, the condition will affect them for a short period in their lives, for others, the consequences can be more long-term.

However it can be well managed by medication, says Murphy, pointing out that up to 70% of people with a diagnosis of epilepsy can control it with drugs.

Many celebrities — actors Danny Glover and Martin Kemp, and the late singer Prince — have or had the condition.

However, it cannot be denied that, depending on what occupation you choose, epilepsy can potentially have a strong impact on your career prospects.

COULD NOT GET WORK

After being diagnosed with the condition two years ago, former chef David O’Hara, 24, found himself unable to get a job.

“I can have four or five seizures a week with medication. It’s a mix of complex partial seizures and absent seizures and I can lose consciousness,” says O’Hara, from Tallaght, Dublin.

He always disclosed his condition to potential employers and became discouraged when he wasn’t offered a single kitchen job following his diagnosis.

“After several rejections, I reached the conclusion that I wouldn’t get a job as a chef with epilepsy.

“It was a real knock and I became very depressed about it.”

Currently a participant on Epilepsy Ireland’s Training for Success programme in Sligo IT, a pre-employment course for adults with epilepsy, he is due to begin a degree in social studies at UCD, next October.

UNABLE TO DRIVE

Thanks to a supportive boss, a diagnosis of epilepsy seven years ago initially had no impact on former electrician and roofer Peter Garrett (47) — but then the recession intervened.

Garrett, a father-of-two, was rushed to hospital in 2009 following a convulsion, and later had another seizure before being diagnosed with the condition in 2010.

He continued to work, thanks to his understanding boss, but eventually lost his construction industry job as a result of the recession and has since found it extremely difficult to land another.

“I cannot drive with my condition or operate machinery and am now doing this course [at Training for Success] to find direction.”

He has applied to study for a degree in social care at Sligo IT.

“My condition has had a very important impact on my life in the last seven years.”

NEVER AFFECTED MY JOB

However epilepsy doesn’t always negatively affect a career — 2FM DJ Rick O’ Shea, 42 was diagnosed 26 years ago, but says his condition never affected his job.

Although he has not had a seizure in the past six years, prior to that they were a regular part of life.

“I don’t think it’s ever affected me as regards work — every time I’ve changed jobs, one of the first things I tell potential employers is that I had the condition and that it was managed by medication.

“It has never affected my employment at any stage — but I know that’s not true for everybody,” says O’Shea, now patron of Epilepsy Ireland.

However, he believes, it’s not something you should conceal.

“It’s not something that on the basis of which you can be dismissed by an employer for disclosing.

Everybody’s epilepsy is different; it’s managed differently but when it comes to employment for me I’ve always been upfront and it’s never affected my employability.”

LACK OF AWARENESS

Yet many people are concerned about telling their employer.

In a survey by Amarach Research, carried out last January among the general population, 90% of respondents said that the workplace lacked awareness of hidden disabilities such as epilepsy, while 70% said they wouldn’t be confident telling an employer they had a hidden disability.

Disclosure is a concern, says Paul Sharkey, primarily because people can’t predict how their employer will react.

An employer may have “a very distorted view of what epilepsy is,” he says, emphasising, however, that under equality legislation, there is no legal obligation on an employee to disclose their condition to an employer or during an interview to a prospective employer.

“in some cases it would be advisable for a person who is having seizures to inform someone so that if they had a seizure they would receive appropriate support,” he points out.

Though a trained chef, David O’Hara, left, was unable to get a job and plans to start a degree in UCD next October, while former electrician Peter Garrett has applied to study in Sligo IT.

If an employee has had a seizure, for example, there is a legal obligation on the employer to investigate how best to retain that person’s services.

“The person cannot be dismissed on the basis of a medical condition and the law as it stands requires the employer to investigate how best to retain the services by making reasonable accommodation; in other words making the workplace safer or redeploying the worker,” says Sharkey.

“If there’s a health and safety risk, the employer must investigate how the person can be reasonably accommodated within the work environment.

“It’s only after an investigation that an employer can seek an exemption from the equality legislation to dismiss the person. They cannot dismiss you because you have got epilepsy.”

POSITIVE RESPONSE

Richard Eardley, managing director of top recruitment firm Hays Ireland, takes a pragmatic approach to the situation.

He recalls how shortly after commencing work with his company some five years ago, an employee — who had disclosed her condition to her direct manager — had a seizure on the office stairs and fell.

For Eardley, who up to then had no experience with epilepsy, it was simply a learning curve.

“Initially we didn’t have processes in place, so everyone just reacted in the moment to help.”

Later, however, the company spoke with the employee about the supports she needed and also sought expert medical advice about the processes that should be put in place:

“We wanted to make sure that we knew what to do and to provide the appropriate supports both during and after the seizure. We also made her work environment safer.

“Once you go down the road, there’s nothing to be scared of, you just need to recognise the situation and communicate it to the other employees because you have a duty of care to the individual and to everyone else.

We drew up a procedure of what to do in the case of a seizure and showed that to our workforce.

“I’d have no concern about employing anyone with the condition and employees should not worry about that as an issue. It’s not anything to get excited about.”

www.epilepsy.ie

I was told ‘fits’ couldn’t be accepted at work

Ann* developed epilepsy at the age of 15.

At 20 she started to train as a hairdresser.

“I loved it. I loved the freedom I had with my own money,” she recalls.

Her seizures became less and less frequent, but then one day she woke up to find one of the managers telling her that her parents were on their way.

“Things were blurry,” she says.

The next day when she arrived at work — just three weeks from the end of several years’ training — she was called into the office.

“They went on and on and on about how ‘fits’ wouldn’t be accepted in their salons. I wanted to die.

“I had tears and snot all over my face”, she says, adding she wasn’t even offered a tissue.

“I was told that I was a great worker but that ‘fits’ simply wouldn’t work and couldn’t be accepted.

“I was asked to go pack my belongings and leave.

“I had to go back onto a floor full of people whom I had trained alongside, pack my stuff alone, and leave.

“I walked out the door onto the street and I was screaming crying. I lost my job and my confidence.“

Ann didn’t work again for nearly two years, she recalls adding that she later got a steady job which she has held for more than six years.

“My employer knows about my epilepsy. He’s great about it but it can be hard at times still”, she says, adding that she has not had a seizure for three years and is getting married next summer.

*Not her real name