The World Is Watching #spartacusstories #spartacusreport

I’ve been alerted to this by my friend Steve – his post on ME is here – and thought I should really add my two pence as someone who is classified as ‘disabled’. To explain: The consultation on the reform of the Disabled Living Allowance ends on Valentine’s Day, so One Month Before Heartbreak has been set up to collate blogs from disabled people talking about their experiences, whether they have received DLA or not.

I’ll keep it short, I promise. I just couldn’t not say anything.

I’m classified as ‘disabled’ at University in a couple of ways.
1) I am high-frequency deaf, and have been all my life. I can’t hear bus bells, birds singing, most alarm clocks, fire bells… I also have a slight speech impediment that developed because I couldn’t hear the difference between certain letters.
2) I was diagnosed with clinical depression in late 2006 (incredibly long story but the short version is I was on medication on and off until January 2010)
3) I contracted glandular fever in May 2008 and spent the next 2 years constantly ill. Glandular Fever, also known as mononucleosis, or the ‘kissing disease’ (though I personally didn’t contract it through kissing anyone! Mine was much less pleasant – I almost certainly caught it through travelling on the Tube across London every day…) It has affected my life at University to a great extent – though thankfully, this has not developed into ME as is sometimes the case.

I feel like a fraud discussing Glandular Fever or depression as disabilities (contentious issue, I know), so I’ll stick with something I won’t get flack for – deafness. A lot of people who know me will say “Wow, I never knew she was deaf!” – I get told that all the time. I don’t want to make a big deal out of it or label myself as deaf, because I feel that it detracts from me as a person and I don’t want it to get in the way really.

I am not profoundly deaf but it has affected me as I’ve grown up – it made me very reclusive as a person and made me shy away from group situations. At primary school, I was forced to wear hearing-aids at school by a well-intentioned teacher, and bullied relentlessly for it. I will always remember being chased around the playground by the school bully, who caught up with me, yanked them out of my ears and threw them on the floor. Not much of a surprise that I absolutely loathe them and I do everything to avoid actually explaining my deafness to people (though oddly enough i find that people just think I am stupid). I just get on with life, and if I miss things, or people think I’m stupid… It’s their loss, I guess.

It’s an ‘invisible’ thing – in fact, everything I suffer from or have suffered from is ‘invisible’ – it’s not like having a broken leg. It’s not like being in a wheelchair. People can see wheelchairs and casts, and they treat you differently for it – whether positively or negatively. Does this make it harder for me? I can’t really decide.

On the one hand people don’t judge me immediately. In fact, people are often horrified that they don’t know “Oh, I’m so sorry! I had no idea!” (Well, I didn’t expect you to be a mind reader!), and then shock turns into admiration at the fact that I have “coped so well”.. And whilst I appreciate the sentiment, I am hardly going to give up on my dreams because I’m deaf – being classed as ‘disabled’ doesn’t mean I am stupid, thankyouverymuch.
On the other hand, others not knowing means I spend a lot of time putting up with people who don’t believe me, or explaining it to people. “How can you be deaf if you don’t wear hearing aids?” Ohh, bless you, you only understand stereotypes. SURELY I can’t be deaf because I don’t have hearing aids. I clearly must be a compulsive liar! Throughout school if I missed registers, substitute teachers would shout “Are you deaf or something?!” – Um, yes… I am actually. You can go and fetch my school record and it will show you exactly what I can’t hear..

There is still a stigma surrounding disabilities, especially the more invisible ones like mental illness. They’re rarely talked about, though so many people suffer from one form of mental illness at some point in their lives… What worries me is that those discussing and making decisions are so far removed from reality and real people that they can’t even begin to understand what being disabled is like. To me, disability doesn’t mean you are UNable to do things. It just takes you longer, takes more effort – and more importantly, requires more patience and understanding from other people.
How can they make a decision on DLA reform when they have never had to fight twice as hard to achieve the same as those who aren’t disabled?

Originally posted here

 Originally posted as part of the One Month Before Heartbreak Campaign Jan, 2011