Posted in Blog

Time To Own Our Label: Invisible Disability

Quick rant.

So for context: I’ve been causing quite a stir within the Epilepsy community for a piece I wrote for HuffpostUK, about Epilepsy being a disability (‘Is Disability a “Dirty” Word?). When I say a stir, I mean mostly positively, however also negatively.

When I was diagnosed back in 2014, I wasn’t even aware that my life was changing in more ways than one, because:

You are likely to be classed as disabled by the Equality Act if:

  • You have epilepsy that has a substantial effect on your day-to-day activities or
  • Your epilepsy would have a substantial effect if you were not taking your epilepsy medicine or
  • You have a type of epilepsy that is not currently causing any problems or needs epilepsy medicine, but could come back or
  • Your epilepsy has lasted, or is expected to last, for at least 12 months

https://www.epilepsy.org.uk/info/equality/equality-act

 

My article was given the nod of approval by Epilepsy Research UK and Epilepsy Action, yet a few people got so up in arms about it!

I even happened to stumble upon a blogger I follow, who had come across the piece and had vented about it on her blog. The blogger had said that they definitely were NOT disabled and were furious that I was insisting it so, even though they have frequent seizures, but dismissed them because they only last about thirty seconds or so, but then they had applied for a Disabled Person’s Railcard. Why would you apply for a Disabled Person’s Railcard, if you’re not disabled?

They also said that any time they had disclosed their condition to prospective interviewers, they’d been refused the job they were applying for 😫 regardless of being more than qualified for the job, and admitted that they tried not to disclose their condition whenever possible. I know that this has happened to a lot of people with Epilepsy, which is Disability Discrimination. This is awful!

They said that they had carried out their own Facebook poll amongst people with Epilepsy, where 50% said that they definitely were not disabled, 25% said that they were, and 25% said that they were unsure. My partner thought that those numbers were a bit suspect, but I’m not here to throw shade…

 

Well, I’m sorry but you can’t argue with the law.
Furthermore, most of us don’t even know how to access the correct information about our condition.

Some clinicians are still very unsure.

Puzzled male shrugging wearing lab coat

(Image source)

Somebody on my Facebook support group was diagnosed with Epilepsy almost five years ago, but had only just found out that we’re entitled to free prescriptions with an NHS Medical Exemption Card. I was so angry for her, I wanted to sue every single medical professional she had ever come into contact with on her behalf! That was one the first things I was told when I was diagnosed!

Some don’t know that they’re entitled to free travel (because we’re not allowed to drive) – I didn’t find that out until I met my Nurse Specialist (who I nickname my “Fairy godmother” 💜). When it became evident that I was going to lose my job, it was her who also advised me on what benefits I would be entitled to.

Within our Facebook group we share a lot of information we hear through the grapevine: there are people in there who are media volunteers for Epilepsy Action, and are therefore very educated in terms of the latest on what is going on with Epilepsy; there are people like me, who have very strong relationships with key medical staff and union members who therefore know Employment law, which is also how I came to know that Epilepsy is a disability under the Equality Act 2010.

 

Epilepsy is isolating, and as warriors we should be standing together, not dragging out. That’s the reason I, as well as so many others share our experiences. The point of my Huffpost article wasn’t to offend anybody either, it was to educate, because the more we know the stronger we are as individuals as well as a community.

Like I said in my HuffPost article, there’s no shame in being disabled. I embrace it, and I’ll campaign until it kills me, until it’s no longer a dirty word. Because to me, and loads of us walking around with invisible disabilities, it isn’t.

XOXO

Author:

I’m Cece Alexandra and I have Epilepsy. Since being diagnosed, my life has changed significantly. After studying and teaching Humanities and Literature for all of my adult life, I was bullied and lost my job a month before qualifying to become an English Teacher. Once you fail the Teacher Training course in England, you cannot ever retrain; I then became too sick to work because of my Epilepsy. I am now currently studying an MSc in Mental Health Psychology with the University of Liverpool. My disability provokes me into raising awareness for invisible disabilities, which I also actively partake in with Epilepsy Action. Part of that awareness is to help fight against invisible disability discrimination - I believe that this behaviour is not cognitively unconscious; modern society is actively partaking in a hierarchy of disabilities and I believe that there is not enough psychological research to prove this. I am also clinically interested in Cultural Psychology - particularly Collectivist Culture, and wish to pursue this further in my academic career.

4 thoughts on “Time To Own Our Label: Invisible Disability

  1. Sorry to bust her bubble but we are most definitely classed as disabled and there I nothing wrong with that.
    I live in Wales where all life long medication or subscriptions are free so I’ve never had that problem, however I was 18 (so 10 years diagnosed) before o realised I was entitled to a bus pass and free travel. It was also my epilepsy nurse who helped me fill out my PIP forms after being declined it the pest ime round as apparently putting ‘sometimes’ as an answer doesn’t warrant help. Even though I can wipe my own behind and cook my own food if I’m having a good day I had to exaggerate and just plain say NO I couldn’t do those things. X

    1. URGH she made me so angry. People make me angry all the time, like being disabled is just about being in a chair, or like you said, not being able to wipe your own behind! But you know what, there have been times when I’ve had complex partials on the toilet and haven’t been able to move, so technically haven’t been able to wipe my butt! (I did put that on my PIP form LOL). You’re right though, you do have to exaggerate because what people don’t get is that one day you can be fine and then suddenly have a seizure, or a cluster, and then you’re down for days, but then once you’re recovered, it’s like it never happened! But only the people who really know you get it. It’s so infuriating. Anyway, I love being disabled. Who doesn’t love freebies? Come on! Haha! xoxo

    1. Gurl get your Freedom Pass! (if you live in London, if not, the equivalent!) I get the bus two stops, just because it’s free! hahahaha sometimes my legs hurt so much I actually have to! xoxo

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