This blog post was inspired by a tweet I read from Cate Moore which really upset me. I am almost 100% certain it was not her intention to upset me but the sentiment in the tweet was something I had (rather stupidly it would seem) hoped never to read about again. What makes it worse is that I face a different version of the same thing every day. I am not going to quote what she said - you may get a big enough clue from what you are about to read.
There are times in my life when I wish I could teach "able-bodied" people what it is like to have a disability and be forced to fight it in order to "conform" to everybody else's idea of how I should behave.
What makes it worse is when it is made clear to me that - in order for me to get what is rightfully mine (extra time to complete certain tasks, assistance to do something which other people may find easy, etc) I actually feel like I have to revert to my status from when I was at school.
I have said before that - if I were to complain as much as I actually want to about things which make my life difficult - I would sometimes feel as though I never shut up.
It is bad enough knowing I am defective without someone else (who has never met me) deciding on how visible I should make my defect (or should I say - the side-effects and symptoms of it) if I want to gain access to services, etc, to which I am entitled.
The irony of living in a "Mainstream" World is that I can never be certain where the "trigger" is which encourages people to decide if I am "normal" or not.
Let's face it - the current UK Government wants every Disabled person to take a full and active part in society - up to and including holding down a job (no matter how unsuited it is to their particular needs and abilities). However, that is exactly the same criteria they seem to use to clear people off the "Benefits" Merrygoround. The more someone can apparently do independently the less money (Disabled Living Allowance or Personal Independence Payment) they get.
I am honestly in two minds about this. This is for one very simple reason.
On the one hand you could be forcing claimants to exaggerate existing symptoms (in some cases forcing them to go for the "worst case scenario" which may result in regressing to when it was the worst it could get - even when the claimant has recieved treatment or therapy to alleviate their struggles).
On the other hand - there are certain disabilities which are either totally invisible (Mental Health Issues, certain other diseases or conditions which are life threatening, etc) or - worse - the human you are looking at is displaying signs of their disability but not necessarily displaying the exact extent of the disability at that particular moment. Finding out the exact extent of my sight problems and how they affect me in daily life would involve you spending at least a day with me - simply because things like lighting conditions, etc, can have a drastic impact on what I can and cannot do.
What upsets me the most is the thought of having to ignore the hard-earned progress I have made in learning how to overcome my difficulties - and dance to someone else's tune - in order to prove what should be the "blindingly" (pun intended) obvious.
Society has a choice - either they can trust disabled people to make their own judgement (or their carers, etc, to do the same) and root out those who are faking it - or they can treat all disabled people as criminals, thereby forcing them to act as exactly that - whilst leaving those with genuine needs to fend for themselves.
I may be trying to be too clever when I say that "Mainstream" society can do a hell of a lot more to help disabled people integrate with them.
The first thing which needs to happen is for the accusatory questions and statements to be removed from the Media and Public Life. I will happily talk to you about my sight in person - what I will not do is stand around whilst you make decisions about me and my needs based on a three minute conversation (especially if I was not the person you had the conversation with.
Next thing I want to happen is as follows - for employers to realise that disabilities are not contagious and they usually involve less work than you think when it comes to making alterations, etc, to buildings.
Basically what I am trying to say is - a bit of cooperation goes a very long way in helping the long-term unemployed person with disabilities back into work.
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