To celebrate having been shortlisted for a Young Epilepsy Gold Champions award, I’m taking the opportunity to post a shortened form of the lecture I gave to a Suffolk Youth, Disability and Employment forum last year

 

Epilepsy is the world’s most common serious neurological disease -1 in 3 of us will have a single seizure sometime in our lives and for 1% of us this develops into epilepsy.  It’s not generally a biggie – most people with epilepsy  have no seizures at all because their condition is controlled by medication.

Although there are plenty of other hidden disabilities which unfairly affect employment  – in people who look ‘normal’ on the outside, who will make as good an employee as anybody else, but whose condition can cause reservations in the way people think of them and think of employing them – the impact of epilepsy on employment is particularly gross

Who gets epilepsy?

Anyone can develop epilepsy:   all ages, races and social classes. It occurs because it is familial, because of injury or illness, because of a stroke. And as there are over 40 types of epilepsy,  just knowing that a person ‘has epilepsy’ does not tell you very much about the type of seizures they may have and what they can or  cannot do.  Yet many – most – people with epilepsy are anxious to keep it secret because they fear stigmatisation, ostracism and discrimination.

And rightly, because people who are known to have epilepsy are so very frequently stigmatised, ostracised and discriminated against!

Of course, the thing about a hidden disability is that it IS hidden,  so that no-one need know of it unless it shows in some way – in epilepsy, the occasional public, embarrassing seizure in the street.  With the 70% of people who are controlled, you would not recognise them as having epilepsy  – in fact we’ll all know people who have it, but we don’t know that they have it.

So its Catch 22 – people are only faced with examples of epilepsy where its uncontrolled and overt, and publicly recognisable – the scary negative images you see secondhand rather than linking it to the ordinary person they know.

In fact since the death of that famous epileptic Julius Caesar  its hard to think of many public heroes, hard workers or divergent thinkers as role models for epilepsy. Or  even antiheroes, dossers and poor thinkers. There will always have been  at least 6 epileptic MPs in Parliament. Yet it was only finally in this current parliament that two MPs: Laura Sandys and Paul Maynard – were open about having it!

It is as if people think epilepsy were rabies – or syphilis – or smallpox.

Well, it isn’t.

Epilepsy treatment in Suffolk

Suffolk has no specialist epilepsy care within the county. You can’t get private health  insurance for epilepsy and so it  isn’t a popular neurological specialty.  (Cynical? Not me!)

As a direct result of this, simple changes and ‘tweaks’ to medication (simple but  vital – they could make the difference between a person functioning and non-functioning in society) historically took ages and gaining control took needless years. Years in which everyone became prey to lower and lower expectations, anticipating social care ‘solutions’ rather than recognizing that epilepsy is a temporary health problem for a person capable of leading a full and fulfilling working life.

Hurrah for GP commissioning – as long as you have a good GP.  It used to take decades for a tertiary referral from often defensive, arrogant ‘nothing can be done, don’t bother me’ consultants. It is now recognised that tertiary assessment needs to be done as soon as possible if someone with epilepsy is going to live – and work – as others do!

Latest NICE guidelines are here. Let’s do all we can to ensure they are adhered to, shall we?

Epilepsy and education

Limited expectations  of people with epilepsy impact equally strongly on education.  Shockingly, HALF of all students with epilepsy fail to reach the academic level predicted by their IQ, with effects that can be life-long. This is because a good educational outcome for  students with epilepsy is not just about medical care and risk assessment, but also ensuring that schools and teachers manage the impact that both the condition and the medication has on learning.

Its not a big ask but we’ve not got there in Suffolk. Those of us with personal experience know that low academic achievement among Suffolk students with epilepsy is put down to the failure of that student, rather than the failure of the Suffolk school system to educate. And very convenient it is for the Suffolk educational system to think so!

Last year, after a lot of  pressure from myself, Young Epilepsy’s School Epilepsy champions  scheme finally reached its first school in Suffolk. It’s a start – but we need so much more. The scheme needs to be rolled out – and taken seriously (no lipservice please, SENCOs) – countrywide.

Because (again I speak directly to SENCOs) it is not enough to call students with such hidden disabilities  ‘special,’ and pat them on the head, and give them gold stars, and tell them they have completed ‘challenges’  which did not challenge them – if it fails to prepare them adequately for a world of work. It is certainly not enough for educators to wave such young people out of the educational door at the other end of a life of gold stars and unchallenging challenges without taking any care or responsibility for what they have been offered and whether it was fit for purpose!

Here employers must help: they have no qualms in telling schools where they have failed in educating  ‘normal’ school-leavers. Couldn’t they do the same favour to those with epilepsy?

Remember, if school leavers with hidden disabilities can overcome these hurdles it doesn’t make them ‘as good’ as non-disabled employees – it  actually makes them better –  Paralympians to the workplace’s common-or-garden Olympians. Dealing daily with an unsympathetic able-bodied world  gives such people the potential to be not only more determined and more competent,  but more resourceful, more resilient, more capable of dealing with failure and finding other ways round a problem.

Its very much like swimmers train to become stronger with lead weights strapped to wrists and ankles. In the sports world it’s called progressive overload.

 Young people with disabilities have potential to go further and faster than others. What a shame the educational system has the tendency to patronise this potential out of them!

Epilepsy and  employment

And of course this patronising attitude doesn’t improve the job prospects of a youngster with a hidden disability. Instead it goes to prove – to employers, along with the school, the doctor, the young person and their family ( in fact the rest of the world)  that people with conditions such as epilepsy are simply not up to the job.

At the end of the day, its not just the health, and the education system that has an impact on work. Low employment is also failure of the workplace.

While some good employers accommodate epilepsy and similar conditions– and let’s remember:

• 70% of people with epilepsy are wholly controlled by medication
• epilepsy is a disability and people who have it should not be discriminated against
• a diagnosis of epilepsy per se has no impact on intellectual attainment or innate capacity

it is surprising how frequently epilepsy is linked with joblessness.  Indeed, when my daughter was due to have statutory work experience at school  no workplace at ALL could be persuaded to offer her a placement– with the noble and notable exception of the Ipswich Hospital Education Service. (Thank you, wonderful Ruth Pickover)

Don’t let me get started here on all those young people with an over-developed sense of entitlement who are supported to feel that being an ‘unpaid intern’ is a breach of their human rights. Many disabled youngsters would give their eye-teeth for such chances. In fact the last time I went to a convention for employment and the disabled,  we were told that paid work was hard, almost impossible,  to achieve – and unpaid work of any sort was recommended as a goal.

Tell me, are disabled youngsters worthy of less human rights than the mainstream?

For how can anyone learn to support themselves unless they are ‘allowed’ to work? The Intolerant Press (you know who I mean) talk endlessly about the ‘work-shy’. For people with epilepsy it’s much more a case of employers being ‘worker-shy’

Epilepsy, employment and discrimination

So with a hidden disability what should you do? You are legally obliged to declare it, employers are legally obliged not to take it into account. All’s fine and dandy.

Right.

Does it really work that way?

I know a young woman with bad epilepsy. She has one or two tonic-clonic seizures a week – almost all outside working hours. She is personable, presentable, intelligent, capable, active and  hardworking. She has admittedly only one C-grade GCSE because GCSEs require you in effect  to sit through an exam without having a seizure – and she has yet to manage this.  But she can read Dickens and budget and market and cook for the family and do at least as much maths as I can and she’s studying horticulture at college.

Has she ever worked?

Yes. Voluntarily. In a charity shop. She had a job in a pub for a couple of days – a pub which didn’t ask her about her health. And she did fine,  until her ‘emergency protocol’ fell out of her handbag – and then it was not that they didn’t want her – its just that she was only on trial and someone was more appropriate. Is she discriminated against? You tell me!

The interesting thing is, I know someone else with epilepsy which has been lifelong, but only recently diagnosed.

This put her in a position where the underlying condition was present throughout her life, but  there was no requirement for her to disclose it because she wasn’t aware that she HAD epilepsy.

A hidden disability indeed.

What happened to her? Well she might fall down occasionally, but she got a good degree, has had a very full working life  running a publishing house, editing a national paper, writing to deadlines through the night as a writer whilst managing  singlehanded as lone parent, sole breadwinner and 24/7 carer. She has always cycled everywhere because she never felt wholly safe to drive, but backpacks across China every summer she can, and is now in local politics. No-one expects she can’t do things.

Where doors for the other young woman are shut – doors for this person are always open.  She’d be astonished to be patronised.

Would she have had the same life if she had been diagnosed in her teens? I doubt she would have been allowed it.

There are only 2 things she (ok, I) can’t do. I now officially can’t drive, when in the past I didn’t drive through preference.  And I must write out any speech in advance just in case a momentary  flash from the temporal lobe  deprives me briefly of words. It’s hardly a big deal.

Let’s hope that an official diagnosis won’t change what society allows me to do, and how society allows me to work, eh?

And let’s look long and hard at what society is allowing others to manage.

It’s not only stereotypes we have to challenge,  its also the preconceptions of those who intend to support us!