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Do You Think Attitudes to Epilepsy Have Changed? Well, Maybe.

Trigger Warnings: Discriminatory attitudes to disability, discussion of asylum treatment methods, discussion of mental health, historic offensive language describing seizures

Author’s note: Some of the language used is now considered to be offensive, similarly they mention historical treatments which are also considered offensive and awful now. The language used is quoting what is used in the video – and it is important to use these quotes fully. 

It was ‘Epilepsy Awareness Day’ or ‘Purple Day’ on 26th March, where people wear purple to raise awareness about the realities of epilepsy. During the promotional build-up, UK-based charity ‘Epilepsy Action’ tweeted a video from 1957 highlighting historic attitudes to epilepsy. They asked, “Do you think attitudes have changed?” As I watched the video with horror and sadness at the stigma people lived with, my initial reaction was a resounding, YES.

In the video it is clear that attitudes in society and the treatments at the time influenced the interviewees’ attitudes and opinions to their disabilities; 

“I told them that I had fits. They thought that I went around bashing up everyone.”

“If you’re big and they think you’re strong enough to take more drugs, well they just pump more drugs into you because they know that they’ll cure you of the fits. But they’re not worried so much about the physical disability.”

What was also uncomfortable to listen to, was how epilepsy clearly influenced their lives and attitudes to their own wellbeing and self-esteem; 

“One does begin to find that one’s social life diminishes. Not so much that your friends are bothered about it (although of course some of them are) but you feel that you’re going to embarrass someone if you go round and upset the party.”

“I wouldn’t like to get married and make my boy or girl be born with fits.”

“It wasn’t fair to get married. I didn’t think it was fair to the woman or any girl to marry me under those circumstances.”

Treatment in the 1950’s was still management and “care” in the old asylum system or in newer “epilepsy colonies”. It wasn’t until 1959 that the Mental Health Act ended the old asylum system, and it wasn’t until a whopping 36 years later in 1995 that the Disability Discrimination Act ensured people with epilepsy were included in the legal definition of “disabled”.

I’ll be honest. It took a while for that to sink in:  It was legal to discriminate against people with epilepsy until 1995. I was 7 and had already had my first batch of seizures. 

While the treatment of epilepsy may have moved on leaps and bounds in the last 60 years, attitudes not quite as much. Reading responses were just as troubling as watching the video.

Stories of being told not to discuss their diagnosis for fear of being sent to institutions, being insulted due to asking for strobe lights to be turned off at university parties, and offensive language used as insults to describe people with epilepsy are all too familiar to me.

In 2018 the journal, Seizure published results of a survey into attitudes towards epilepsy in the UK population with initially encouraging results: negative views of epilepsy were held by only one per hundred respondents. 

However it is clear that while attitudes appear to be gradually changing for the better, there’s still a long way to go. In 2016 neurological charity Sue Ryder found that 45% of people were afraid of getting a neurological condition such as epilepsy, with reasons for this fear being poor quality of life, losing independence and the burden placed on loved ones.

Nearly a third thought neurological conditions are more stigmatised, and 1 in 13 said they had seen a person with a neurological condition being teased or bullied in public.

Only this year a poll by Epilepsy Action showed a third of people said they believe epilepsy does not impact a person’s mental health and a whopping two-thirds of people agreed with the suggestion that people “just need to be more positive when living with health conditions”.

Anyone who has lived with any mental health condition can tell you that being told to “be more positive” is the most ridiculous, toxic piece of advice you can be given and to be quite honest, these toxic attitudes need to get in the bin. 

The more I read survey results and hear stories of discrimination experienced today, the more I understand the heart-breaking opinions in that video from 64 years ago. It was troubling to me as someone with epilepsy, listening to others thinking that they were not worthy of love due to a disability I have.

But what is equally troubling is that toxic attitudes to epilepsy still contribute to issues relating to mental health and self-esteem today. 

Non-disabled people have a long way to go with regards to their attitudes not only towards epilepsy but also towards mental health, and I’m not entirely sure the pressure and responsibility should keep falling to us anymore.

Attitudes certainly need to change, but why should people with epilepsy be the ones to jeopardise our mental health and wellbeing to make non-disabled people change damaging attitudes and actions?

It’s exhausting. And while treatment continues to move on leaps and bounds, even in my lifetime, attitudes are lagging. The disabled community should not be a battering-ram and I’m tired of being treated as one for the educational purposes of non-disabled people – they need to catch up. And fast. 

Learn more about History of Epilepsy in the UK

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