The person behind the disability..

So, my blog is getting more views and I'm questioning what I am trying to achieve by blogging.  Yes I enjoy letting the crap out of my head..it definitely helps me...but am I actually achieving anything in raising awareness about HD or other similar neurological conditions?  I'm not sure. So I thought about the one thing that I feel is most important that people understand..the one thing that could make the life of people who live with disabilities easier.  I came to the conclusion, that seeing the person, and not the disability is the most important thing.

I would say in the main I see Mr W and not his disability.  But as hard as I try, sometimes I just see a disabled man sitting there..I focus on what he can no longer do and forget who he was.  But we had a moment. Rightly or wrongly, I decided to read Mr W some of my blog.  I read him the one that talks about the reality of HD.  A lump stuck in my throat as I read it, and I panicked that it was too harsh.  I apologised.  He looked me straight in the eye and said clear as day 'its true'.  I then read him about the role of the shitty ex-wife.  I think he cried, I'm not too sure, people with HD can make noises, but I think that was what was happening.  I don't know whether I should have read him the blogs but I know at that moment we connected, and I knew that he was still in there, still having these emotions, still ultimately knew that I am probably the only person in his life who really knows what he is thinking.  It was a wake up call for me, not to forget the person behind the disability.  

If you think about it, we all have disabilities, ok, not to the magnitude of someone with a progressive neurological illness but things that we find hard to do, or things that hold us back.  As a child I was acutely shy, I regard this as a disability.  It stops you making friends, joining in...doing things that involve interacting with others.  It makes you blush when a boy talks to you in your early teens (especially when you are spending your days in an all girls convent school) All I can say is, thank God for vodka.  So, we all have our issues, our difficulties but we don't want to be known as the 'shy child' or the 'child who is crap at sport' we want to be seen as who we are, and to be given a little bit of help in the right direction.

So, my message is this, everyone living with a disability is a person first, disability second. See the person, and you will suddenly be able to relax and talk with ease.  Talk about what you would normally talk about...because news flash...they are just like you and me.  God forbid it could be any of us one day.  See the person, and you will be able to ask them how you might be able to help or what you can do to make their life easier.  See the person, and you will once again find the funny in a miserable situation.  Because I know Mr W is still in there, it seems perfectly acceptable to me, when I'm struggling with his wheelchair, to tell him to stop being so lazy and just get up and walk.  We laugh...because why the fuck not? it beats crying.

And, if you come across a shy child, be nice...because one day they will turn into a mouthy bitch like me.

Casualty vs Reality

So the HD community have been closely following the story line in Casualty.  There have been cries that it is not accurate but joy that HD is being highlighted in a popular programme that can raise awareness amongst you 'normal' folk.  Yes I found the story line emotive, yes her movements and poor speech were upsetting.  Yes the fact that her mental health could have been affected, including her judgement, up to 20 years prior to official diagnosis was upsetting..... but to be honest, with me, it didn't touch the sides. For me, the reality is much worse.  

She could speak..Mr W can no longer speak. He has a sheet with the alphabet on.  But guess what? he can no longer co-ordinate his movements to point to the relevant letters.

In Casualty, the lady was advised to 'look after herself' ...the later stages of HD do not allow this pleasure.  You cannot co-ordinate yourself to wash, eat or even change the channel on the television.  Not only can you no longer do this for yourself but you cannot even communicate to ask someone to do this for you.  

Enjoy food?  you can no longer swallow effectively. You have your food pureed because you become at risk of choking or if your really lucky it might go into your lungs and cause infections.  A large amount of your food will come out again, ensuring it is an unpleasant sight to watch you eating, and you will notice people looking at you in disgust.  Your clothes will always be dirty because as soon as they are on, something will be spilt...or if not you will probably dribble over them anyway.  Your daughter will try to avoid sitting too close to you as she really doesn't want dribble on her new top.  The people in the Nursing home will tell you off when your liquid comes out again...because they are pig ignorant of HD...and you are unable to ask them to give you less at one time.  

People in the Nursing home will forget that once you were a 'normal' person like them and they will talk to you like you are a child.  The other residents will change the channel because 'you cant understand anyway'. 

Want to get up to get something?  nope sorry..you can no longer co-ordinate your legs and even if you could, your balance is fucked.

And whilst you are sitting there in your incontinence pads you can while away the hours knowing that you missed your son's parents evening, missed your daughter's play date, and dream of the holiday that you won't have that year.

You will be overloaded with visitors. Or, maybe not. Because the reality is no-one really wants to be around someone with HD.  Its awkward for them you see...makes them uncomfortable when they can't understand you.  Makes them squirm when you eat. They don't know what to talk about.  It's just no fun and often gets left to a few close family.

So, perhaps Casualty was upsetting, but the reality right now for Mr W is far worse.  Give him back his movements, his slurred speech, his mental health issues.  I'm sure he would jump at the chance to swap places.  If, of course, he could still jump.