I know that I shouldn't let EVERY little negative comment on social media get to me, especially when I get so much love for the campaigning I do, however, it does.
This week, I wrote a piece for HuffPost's Lifestyle's Blog, which you can check out here:
It was my response to the way in which society treat us disabled folk - particularly those of us with invisible disabilities, most especifically Epilepsy.
The response to the article was phenomenal. In fact, I'm still trying to respond to all of the comments! I never expected such a huge response, I just wanted to give a voice to Epilepsy. The original article I discussed in that post ruffled quite a few feathers within the disabled community, incredibly so. It was clear that the author hadn't even spoken to anybody within the disabled community and of course, nobody within the Epilepsy community would ever get a look in, which is why I got in touch, asking if I could write a piece.
Everybody who responded to my HuffPost piece concurred that it didn't come across as self-deprecating, and readers shared experiences where most had received negative treatment from the outside, where members of society refused to empathise with an illness they couldn't, or in fact, DID NOT WANT TO understand. Stories of mothers, whose children are unsupported in schools; adults who struggle to find employment/ stay in employment because of unsympathetic employers; men and women who unfortunately can't find relationships; endless drug changes/ cocktails, hoping that this time will be the magical combination to fix the uncontrollable electrical currents within our brains; horrible stories of public humiliation of being mugged while unconscious post-seizure.
Now I come to the crux of my anger: amongst these posts, this morning, I awoke to one, from a woman with epilepsy who had read my piece, to which her response was:
Well I don't see myself as disabled.
Her brief explanation was that, although she has occasional seizures, she has the support of her family and friends, and hasn't ever suffered the negativity I have.
To which my response was:
Well I do too. I have lots of people in my life who accept me, however the public perception of us is very different to how our friends and family see is.
Epilepsy is a Disability. But you're entitled to your opinion. Thanks for reading xoxo
This was an extremely well thought out reply, because I could not believe the lack of empathy this person had shown for the other people who had posted before her; To me, her message felt like a monumental f*** U to the rest of us, who hadn't "got it together like her"; she had also completed disregarded the narrative engagement before her, just to shout about her own privilege.
Does this excuse her lack of basic sympathy for others, even if she cannot feel empathy for others, who suffer from a condition which she also suffers from?
I'm also shocked that somebody with Epilepsy, denies that they themselves is disabled.
Being disabled is not just how we have to perceive ourselves, it's also the way society perceives us, and unfortunately society doesn't care how we perceive ourselves, because they see us as disabled.
Sadly as much as we attempt to fit in, we aren't just 'regular people' either.
Regardless of how severe your Epilepsy is, how many seizures you are having, you are disabled and if that is something hard for you to swallow, then we have to question why that word "disabled" has become such a "dirty" word, because it most certainly isn't.
There are different levels of disability, different faces of disability, different types of disability.
Being disabled is nothing to be ashamed of.
It is something to be embraced.