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
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.
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.