A forgotten world

I’ve said it many times before the disability world is very much a second thought and forgotten world.

It’s a subject I probably should have written about long before now, so why haven’t I!? probably because when you spend so much time fighting for the simplest of things like going to the toilet you live in hope that things will get better, well it hasn’t. Even in a pandemic it just highlights even more that people including myself living with a disability is an afterthought.

I know I’m not alone as you don’t need to look far to find a new story to read of the frustrations and down heartedness of a disabled person or family member feeling confuse, let down and left behind.

I have a rare form of muscular dystrophy a progressive muscule wasting condition and was quickly put on the ‘At High-Risk’  category to shield myself from the outside world and the outside world from me, what people don’t seem to realise is this isn’t a new concept to me I’ve been doing this for years, just catching the commoncold for me can be deadly! but it also doesn’t mean I don’t want a life outside my house.

So like most who have been shielding I watched Boris Johnson last week give us his ‘get out of lockdown‘ speech waiting for anything to be mentioned about people that are shielding but nothing until the following day with a document stating that those who are in the ‘clinically extremely vulnerable cohort’ will have to shield themselves for ‘some time yet’.

That’s not an answer, that feels very much like ‘we’ll deal with you when we’re ready to;

Yes I might have been labelled as one of the most “Vulnerable” in Society but i still have my work/Campaigning and family, friends I’m longing to see. Yet again it just feels like if you have a disability and high-risk we’re just an afterthought.

Now don’t misunderstand me I’m not totally blonde I completely understand keeping us from the outside world is the safest option for us but when there is very little if nothing in place to help us though lockdown it’s hard. So yes, I definitely feel let down by the government and that they don’t care about me or other disabled people.

When we first went into lockdown I did chuckle to myself a few times as people started moaning they where bored andtheir Independence had been limited, i did a few times find myself saying to people ‘welcome to my world‘ along with millions of other disabled people. I even joked that I’d thought about doing a video congratulating able-bodied people on being able to stay indoors as some people find it very easy to congratulate disabled people when they’ve left the house!!

I’ve definitely found it slightly harder this last week with lockdown being eased for most people. My garden backs onto a field seeing them though the gaps in the slats of my fence as much as it great to see the field being used, I’ve also found myself feeling jealous of their freedom.

I never really worried to much before lockdown of contracting coronavirus but for some reason when the lockdown rules eased I found myself more worried of a second wave which wouldn’t just leave ‘High-Risk’ in the same four walls longer it would also mean more unnecessary deaths.

One thing I do know and come to terms with very early on into this pandemic is my life will never be the same again. And realistically I’ll be shielding along with all others in the disability world and high-risk category until a vaccine is found, meaning I have no timescale of when I can finally hug my nan or see my girl friends scares me.

But I will do what I always do pull my wheels up, put a smile on my face and just deal with it taking everyday as it come as in Reality we’re all going through the same thing, just some of us are in a different boat.

I know that when I’m finally allowed out the front door it will probably be an overwhelming experience I can guarantee at least a few tears,

What does the government need recognise that disability rights aren’t optional we are just as equal and that all care gives are given the support they rightly deserve this does include the thousands of unpaid carers but mostly Acknowledgement.

Kerry 💋

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5 things I do differently Living with Muscular Dystrophy

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A quest for more Independence

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