Stigma: A Social Issue
By RUSSELL POLLARD
For some years now many of us have been talking about the stigma which is attached to epilepsy. The British Epilepsy Association even had a T-shirt with the words "STAMP OUT STIGMA" emblazoned across the front.
Stigma is also often talked about in Australia. For example, it's an important focus in the National Mental Health Strategy.
No doubt the fight against it includes public awareness campaigns. And having people with epilepsy stand up to be counted is an important element of any such campaign.
Many people point to eminent Australians like Tony Greig and Hugo Weaving when they are talking about people with epilepsy in the hope that their fellow Australians will realise that epilepsy is not something which makes people less able to work and contribute and participate fully in the community.
And yet relatively few people make themselves available in this way. Of course we need always to remember that it is not our role to be expecting people to speak out publicly if they feel unable to do so. The confidentiality of our clients is a fundamental guarantee for people contacting the EFV.
We have therefore been very heartened at the Foundation that an increasing number of people are willing to talk about their epilepsy publicly, and we will be featuring some of these people during Epilepsy Awareness Week in September. But there is more to this "stigma" business than having people stand up to be counted.
When you look at the numbers of people with epilepsy, when you look at the lifetime prevalence figures, you realise that huge numbers of Australians have the condition.
The World Health Organisation also tells us that epilepsy is the most common serious brain disorder or condition there is!
The truth is that despite its prevalence many people are not only fearful of "coming out", many people in the community are fearful of the whole idea of epilepsy. The diagnosis of epilepsy is anything but straightforward.
Losing a licence when it's not your fault should not equate to being punished!
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For the first few months doctors will try to get the seizures under control. During this time, people with driving licences have to learn to do without them. This can mean a major restriction on many of the things Australians take for granted. For some people it means they can't get to work. It can even mean no longer having work. For people who live outside Australia's many country towns, shopping becomes a virtual impossibility.
For about 20% of people with epilepsy, their licences are lost for good. In some countries you can never have your licence back!
Eventually, in Australia, you may possibly get a card which entitles you to concessions on the cost of public transport and another for taxis. This can help a bit. But when you think about it, the whole community bears the cost of our transport infrastructure and it is virtually pulled like the proverbial rug from people once they get sick.
Public transport should be free for people whose access is compromised through no fault of their own. Taxis should also be free. Losing a licence when it's not your fault should not equate to being punished!
Somehow the people who make the rules have decided that getting to the shops or to the doctor or to just about anywhere else you need to go is not basic to the way Australians live. Any urban planner knows otherwise. So even if you do get concessions, it doesn't make it easy. It is not suddenly all OK once you get an M40 taxi card.
Of course it's not the same for all people with epilepsy. By and large most people just put up with the removal of their mobility until their seizures are under control. They just don't make waves.
I know of people with epilepsy who have told friends that they have lost their licences because they were convicted of drink driving. They could live with the social attitude to drink drivers, but not the social attitude to epilepsy.
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The one advantage we have in the western world is access to anti-epileptic medications.
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In both Taiwan and China, despite public awareness campaigns, 72% of parents object to their children marrying someone with epilepsy. In India it, until recently, it was widely seen as a reason to prohibit or annul marriage. Think about it. And where do Australians stand on that particular question? Is that kind of attitude only to be found in the developing world? Not at all! Only 37% of Germans were found to have no objections to their children marrying a person with epilepsy.
The World Health Organisation/World Bank research indicates that the cost of any society ignoring a condition which commonly attacks people in their most productive years has a devastating effect.
Some studies tell us that unemployment rates among people with epilepsy are as much as five times higher than they are for the general community. Other studies tell us that many people with epilepsy do not reveal that they have epilepsy at work. Can you seriously blame them?
Caring parents and doctors routinely encourage people with epilepsy not to go broadcasting it to the world. The penalties seem too grave. Sociologists point to parents and doctors as being significant "stigma coaches".
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Our prejudices are simply different. Not better or worse, just different.
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In the western world we like to think that uneducated attitudes to people facing difficult medical conditions are more common in the third world. But that is simply not so.
People in less educated communities may demonstrate prejudice and ignorance, their beliefs may be wrong and even cruel. And they are often different from the beliefs held by people in the western world. But the fact that they hold different beliefs doesn't mean that our communities don't hold uneducated, prejudiced and cruel beliefs about people with epilepsy. Our prejudices are simply different. Not better or worse, just different.
People living in third world villages live with different social needs and expectations. The demands on people living in western communities are different and need to be addressed differently.
The one advantage we do have in the western world is access to anti-epileptic medications. For up to 80% of the 85% of people who live in the developing world, these drugs are simply withheld. They are unavailable. Often when they are available, their continuing distribution is a major problem.
There will never be enough trained doctors and neurologists to prescribe and dispense the medications which can bring relief to as many as 75% of people with the condition. Our demonstrated reluctance to entrust traditional [non-medical] health providers with the task of distributing these medicines cries out to be challenged.
And to some extent it is being challenged.
The World Health Organisation has initiated a global campaign in conjunction with the International Bureau for Epilepsy and the International League Against Epilepsy to bring the condition out of the shadows and to try to deal with the devastating social and economic consequences of epilepsy, particularly in the developing world.
Even when you are diagnosed as actually having epilepsy, you are likely to learn little more than the fact that the seizures you have experienced are actually epilepsy - and not related to some other condition. This is partly because tests are costly and partly because they are deemed unnecessary if the front line drugs get it under control.
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Epilepsy affects up to 10% of the population ... enough to swing a general election!
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If you can't get it under control, and not everyone can, and you happen to live in Britain you may be referred to a specialised epilepsy centre like Chalfont, where you will have whatever tests are needed to fully diagnose your condition. Your medications will be optimised, and you will be given support in coming to terms with your epilepsy and minimising its impact on your life. This usually takes about six weeks, not in a hospital, but in a special residential setting. It can take a year. But at Chalfont they throw everything they have at it so that you stand the best chance of gaining optimal management of your condition.
This is not an option in most developed nations.
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In many ways epilepsy is hardest to treat at the social level.
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Groups like the Epilepsy Foundation of Victoria have been working for over 40 years to raise community awareness. While the medical advances in treatments available in Australia are at the leading edge, while we have every reason to be proud of our doctors and health care professionals, we have not managed to dispel community ignorance and misinformation, stigma and fear. In many ways epilepsy is hardest to treat at the social level.
It seems ridiculous really. We hear as much, sometimes much more, about conditions such as multiple sclerosis, muscular distrophy, obsessive-compulsive disorder or eating disorders such as bulimia or anorexia. We now have a very good idea that epilepsy is the cause of a significant number of sudden and unexplained deaths among those who have it and who are unable to get it under control. We're not just talking one or two, but figures of disturbing proportions. Yet most people with epilepsy are not told this. Perhaps they would make a whole range of different lifestyle choices if they were.
These other conditions are, of course, deserving of the interest and support they have from the community - and more. In fact, the clearer focus on their often distressing symptoms has perhaps made the messages about them easier to convey. Not that it has been easy for any of the people affected by them, and many other chronic illnesses, to actually get their messages out there into the community.
The very scale of epilepsy, the fact that we all know people with epilepsy, the fact that people with epilepsy are so routinely discriminated against, the fact that there are 60 or more different kinds of epilepsy, make it a difficult thing to explain. But explain it we must if we are to allay the fears and the stigma which make having it so much more difficult.
Not all people with epilepsy have convulsions or fits. Many people with epilepsy have brief episodes of unusual behaviour, or short periods of impaired consciousness. Most people with epilepsy get it under control. Most people with epilepsy get their driver's licences back. Most people with epilepsy do all the things that the rest of us do. They just have to deal with their condition being seen as something you don't really talk about.
An important part of the answer to many of the questions we raise about stigma, has to do with the fact that 90% of the community can view it as someone else's problem.
Once you lift the lid on epilepsy, you see a huge range of holes in society's response. Society has become very good at using stigma to force people to just disappear without making a fuss. When something is too hot to handle, the community has a vested interest in leaving well enough alone.
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When something is too hot to handle, the community has a vested interest in leaving well enough alone.
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Time and time again we have seen that social advances for people with needs not common to the rest of the community have had to take their fight up to the public at a political level. Take for instance the lack of access still faced by people who cannot use stairs. Despite all the noise, access to buses, trams, restaurants [and particularly toilets at restaurants], to school buildings, in fact to most buildings, to most community facilities remains barred. But even if only slowly, thanks to the courage and determination of relatively small numbers of people, we know that more and more people and community groups are mindful of what needs to be done and things are changing. Not fast enough to be sure, but slowly and surely, even if at times grudgingly, things are changing.
There are so many fronts on which people with epilepsy get a second rate deal. It's time to extend the talk about stigma to a public discussion about the responsibility of a community to all of its members.
People whose epilepsy is not well controlled and who would like to have the opportunity to gain optimal control afforded to people at places like Chalfont but who are frightened to be considered a nuisance for asking that someone pay closer attention to their individual situations.
People who have trouble convincing other people about their seizures. People with epilepsy who don't have work. People with epilepsy who want the same educational opportunities as those who don't have epilepsy. People with epilepsy who like to travel. People with epilepsy who live with multiple disabilities. People with epilepsy who can't afford hot water controls in their homes. People with photosensitive epilepsy who just ask that lighting not flicker in public places.
The list of discriminatory circumstances just goes on and on.
The time to speak out is now.
If you listen to talkback radio, why not call in and talk about the things you know to be unfair?
When was the last time you spoke to a politician, or a trade union official, or principal, or anyone who needs to know - which is a very long list?
Every time a person with epilepsy speaks up there are usually other people with epilepsy who are listening. And if we make enough noise, eventually, everybody will be listening. Then we might just reach that critical mass which is such a necessary precursor to any kind of major shift in social attitudes and levels of support. |
