Tag Archives: epilepsy

Disability is often written out of history. We need to ask why

As we continue to mark Disability History Month, Bekki Smiddy writes about  chemist and inventor Alfred Nobel. His legacy are the Nobel Prizes.  Nobel experienced epileptic seizures throughout childhood and here Bekki talks about her own experience of epilepsy and why it’s important we recognise that disability is not a bar to achieving great things in life.

I was diagnosed with idiopathic generalised epilepsy when I was eleven, after several years of unexplained seizures. I had no idea what any of it meant. And I didn’t really care. What I did care about was the way people had started to look at me.

Before I was diagnosed, I figured epilepsy meant I fell down and couldn’t remember sometimes, it wasn’t a big deal. It was other people that made it a big deal.

Every time the word epilepsy came up, everyone in the room would look at me.

My classmates would whisper the word “freak” as I went by.

I got sent out of the class by my teachers for having seizures.

I felt embarrassed and ashamed for something that was completely out of my control.

Leaflets on epilepsy are filled with medical jargon and only explained what was going on with my brain, and scared me with talk of Sudden Unexpected Death in Epilepsy Patients (SUDEP).  What I needed to know was how it would affect my life, how it would change it, and how to not feel so alien.

Looking through history

When first diagnosed I searched for historical figures who had epilepsy. I needed to know that I wasn’t going to be limited; that I could still achieve what I wanted with my life. That I wasn’t “wrong” somehow.

Throughout my adolescence and education I used it as rebuttal for those that attacked me or belittled me for my epilepsy.

We have been authors, military and political leaders, philosophers, scientist, composers and painters. Having a neurological condition didn’t have to hinder me in any way.

Nobel didn’t hide his disability, in fact he wrote poetry about what are perceived to be childhood epileptic seizures.

“…the convulsions followed, til I gasped

upon the brink of nothingness – my frame

a school for agony with death for goal”

But it appears to be written out of his history like so many “invisible conditions”,

Disabled people need role models

Epilepsy charity websites I viewed had sections listing famous people with epilepsy. Yet, it is missing from many disabled people’s biographies. We all need role models, but especially disabled people as we struggle for equality and to enjoy the same life chances as non-disabled people.

Disability History Month is important because many people don’t see disabled people as an oppressed group or understand that the language often used and how our impairments are described, can be so damaging. When people talk about the economy being ‘crippled’, or say that someone is “having a fit” when they mean a tantrum can be so hurtful.

We need to know more about the lives of disabled people and I hope that Disability History Month will help dispel the myths and help improve attitudes.

Read the rest of our blogs for Disability History Month.

I’m not a hipster, I’m epileptic! – End the Awkward

Bekki is 21 and an intern in Scope’s Campaigns team. She studied History at Oxford University, exploring disability and discrimination.

For End the Awkward, Bekki shares her own experiences of awkwardness and explains why there’s no need to hide from disability.

Awkwardness is a natural part of human interaction. However, when it comes to disability, awkward encounters often take on a slightly more negative tone.

Some conditions fall into a grey area between visible and invisible. Like mine, I have photosensitive epilepsy which you might not know just by looking at me. But I do have to use aids, such as specialised sunglasses, in order to go about my everyday life.

On top of this, there’s the stereotypical view that an epileptic seizure is always a convulsive seizure. In fact, there are over 40 different types of seizure which all look very different. This can be alarming and confusing if you aren’t familiar with them.

People often overreact when I have seizures

I have three different types of seizures; convulsive, prolonged partial and partial. Partial seizures happen most often and these are the ones I often encounter problems with.. They occur between ten and twenty times a day and can range from blank staring, to violent head shaking, or my eyes rolling back into my head.

During my more ‘alarming’ seizures, I’ve had people yell “WTF, are you the possessed or something?!” followed by that person rapidly removing themselves from my presence to avoiding assisting me because “I must have done something to deserve it”. I’ve even had religious officials telling me they’ll pray for me or making the sign of the cross at me, so I don’t go to hell.

Rebekka smiles at the camera

I’m not hungover, I’m epileptic!

The more typical responses I get are based on assumptions about why I’m wearing my sunglasses or using a Mac computer. They’re not what traditionally spring to mind when someone thinks of accessibility aids.

Because I wear my sunglasses on overcast days, during the winter months or inside, and can only use Mac computers (due to different pixel technology), I can no longer count the number of times I’ve had to say “I’m not a hipster or hungover, I’m epileptic”.

I’ve even had to avoid wearing hats because of the comments I get and the ease at which people can remove them from my head.

Avoidance really isn’t the answer

There is a reason why priority seating signs on transport and in bathrooms have been changing their disability signs. In the twenty first century we have begun to recognise that there are a range of different access needs and we shouldn’t make assumptions based on traditional representations of disability.

Some people may have never seen a seizure before, but street harassment and avoidance isn’t the answer. This only isolates disabled people further and makes everyone feel awkward about something that can’t be changed. It may look weird to you, but it’s part of my everyday life. And that’s okay. I came to terms with it a long time ago and often laugh about it with family and friends.

Engage with the awkwardness – it’s a fact of life, not a fact of disability. Maybe next time, talk to me instead of comparing me to a demonic entity?

 You can stay up to date with everything End the Awkward on Twitter and Facebook using #EndTheAwkward or visiting Scope’s End the Awkward webpage.

We need to understand epilepsy better

One of our Scope For Change campaigners Rebekka Smiddy has photosensitive epilepsy. In this blog she tells us why more awareness of epilepsy and its effects is needed.  

As Purple Day arrives (Saturday 26 March), it’s a great time to highlight some of the main issues relating to epilepsy.

Epilepsy is perhaps one of the better known conditions; pretty much everyone knows of epilepsy or someone with epilepsy, and it affects 1 in 100 people.

However, public knowledge about the condition remains limited. For example, there are over 40 different seizures, such as absences (blank spells) and head shaking. Despite this, most people only accept the stereotypical convulsive seizure and believe flashing lights triggers most epileptics.

Only around 5 per cent are photosensitive, and there are a wide range of triggers including tiredness, stress, fear, certain smells and noises, illness, alcohol and drug use to name a few. It is important to realise that this is a highly individualised condition.

“It can be a dangerous condition”

It can also be a dangerous condition due to the unpredictable nature of seizures, with a high level of accidents and in serious cases death, due to Sudden Unexpected Death in Epilepsy Patients, although 39 per cent of epilepsy deaths could be avoided.

Most damaging are not the seizures, although they carry significant risk –  it is the isolation, impact on mental wellbeing and mishandling of treatment/seizures. The majority of epileptics can suffer from anxiety, depression and other mental health issues – much is due to social stigma and mishandling of the condition.

Two examples highlight such issues; the Marriage Act of 1949, which prevented epileptics from marrying was only repealed in 1970, and the fact that epileptics still cannot give blood, despite rigorous campaigning by epilepsy charities.

Understanding epilepsy

Epilepsy is a weird one; it falls into the realms of a ‘hidden’ impairment and a chronic condition with physical manifestations you can’t escape.

Societal attitudes continue to have a negative impact. It led me to believe that I wasn’t disabled and, therefore, didn’t have the right to ask for understanding and support.

More generally, it can lead epileptics into risk taking behaviour in an attempt to normalise their lives, and take back lost control.

There needs to be a greater understanding of the condition to ensure that the right treatment, care and support are provided.

Interventions need to be well timed to prevent mental health issues developing, with a greater recognition of the impact epilepsy has on the sufferers everyday life, both in psychologically and logistically.

Seizures need to be dealt with in a proactive manner. During tonic-clonic episodes I have been forcefully restrained, stepped over and ignored, sustained further unnecessary injuries and taken unwarranted trips to A&E – all of which could have been avoid with a little education.

The majority of the public mean well, but sometimes ignorance of the condition and its needs can be damaging and dangerous.

Understanding that epileptics have ‘non-traditional’ accessibility issues is crucial for inclusion. The disability requires a highly individualised approach; basically, we just need to be treated as a person.

Most epileptics are happy to talk through their own epilepsy and needs. This is preferable to making assumptions and helps dispel lingering stereotypical views, and hopefully will reduce prejudice and discrimination.

So on Epilepsy Awareness Day, yes, wear purple, but more importantly, discover more about the condition.

Find out more about epilepsy on the Scope website

I was 21, a new mum, and terrified about the future: #100days100stories

We first shared Dionne’s story and film in August 2014. We’re republishing it here as part of Scope’s 100 Days, 100 Stories project. 

Dionne was in her first year at university in London when she became pregnant with Jayden, now aged seven. He has cerebral palsy, epilepsy and global development delays and isn’t able to walk, talk or sit up.

“I had no problems during the pregnancy, the problems started during labour,” Dionne says. “Jayden stopped breathing and had to be resuscitated at birth. He had seizures when he was just a day old and ended up in the special care unit. Doctors had no idea what was wrong with him.”

“I just had to get on with it”

Dionne had planned to go back to university to finish her degree, but Jayden’s care needs and many hospital appointments ma de that impossible.

She also faced a huge struggle getting any support for Jayden. He was born in one London borough but the family lived in a different one, so neither council wanted to take responsibility – and in any case, services were overstretched. Dionne and Jayden were living alone in a mother and baby unit, with no outside support.

“For the first three years of Jayden’s life we had nothing. No equipment at home, no physiotherapy other than a sheet of paper with instructions, and no real support. Everyone was talking but most people were not doing. I had so much hope in care services but time after time I was let down.

“I was 21, terrified about the future and extremely depressed. There were days when Jayden cried endlessly and didn’t sleep at all. We were both exhausted. I was always on standby for something to go wrong with my son and I hated feeling helpless. I was very critical of myself, and so were the people around me.”

“I go back time and time again”

Dionne originally contacted the Scope Helpline for advice about physiotherapy. She was put in touch with Vasu, a Scope regional response worker, who visited her at home to discuss the kind of support she needed.

Since then, they have worked together to tackle a huge range of issues relating to Jayden’s care, health and education. Vasu wrote to social services pushing them to take notice of Dionne’s case, and this led to Jayden finally being offered a physiotherapist.

Dionne says: “Vasu has sent me so much information about sources of funding and the latest treatments for cerebral palsy. He emails me application forms and sends them in the post as well just to make sure I receive them! He rings me unprompted to give me advice and see how I am. He’s even offered to send job opportunities my way.”

RS3249_DSC_0014Vasu also introduced Dionne to a solicitor to pursue a successful negligence
case against the hospital where Jayden was born, which will be a huge help in providing for his needs in the future.

“Out of all the organisations I’ve been to, Scope’s the only one that’s stuck,” Dionne says. “It’s an organisation I go to time and time again because things actually get done.

“Jayden is so aware and so intelligent. No matter what he goes through, even a seizure, he still has a smile for me. He just needs decent support so he can gain the independence he craves. I want Jayden to enjoy being a child, without restrictions, and I want to enjoy being a mum.”

Today is Time to Talk Day, which asks everyone to take five minutes to talk about mental health.

Find out more about 100 Days, 100 Stories, and read the rest of the stories so far.