Tuesday, 10 May 2011

He Doesn't Look Disabled.

And there is the crux of the problem with many disabilities – unless people can see something obvious (like a wheelchair for instance) then people don't accept it.

My son is 22. He's over 6 foot tall and dresses in combats and hoody type clothes. If you saw him walking down the street you'd probably imagine him to be just another moody youngster, and you may even be worried by his appearance. But inside there is someone suffering from very difficult to deal with conditions and someone who is constantly terrified by the simplest of things. Someone who suffers from something called selective mutism and so can't actually talk to people. Someone who might even appear arrogant in his lack of communication with the world, but simply can't. Someone for whom actually going outside to walk anywhere is a stressful and difficult thing to achieve.

Of course there are many other disabilities where the people can converse but due to their condition may wrongly appear 'a bit simple'. Normally they are far from simple, they merely think about things and process information in a slightly different way that YOU don't understand. There are so many different 'hidden' disabilities that present in so many different ways, and there are probably people suffering from all of these walking down your street, anonymously, but waiting to be in some way abused.

I've mentioned before how my mother has been working in centres for people with mental disabilities for many years so being around people who are different is something I got used to but when it's your own flesh and blood it's different. You see you have to deal with the comments and insults. I grew up well aware of people's intolerance and could give so many examples but one sticks in the mind more than most. One of my mother's trainees (the term used then) had very little experience of going out so part of my mother's job was to help him get into the habit. He found it very difficult and especially found making choices in shops difficult. I clearly remember going out to town with them (as I often did) and we were in a newsagents. He wanted a chocolate bar but was having trouble deciding between two. This was a real dilemma for him but rather than just being patient the shop keeper started getting angry and told him in no uncertain terms to hurry up. It's true that we'd been stood in front of the chocolates for a few minutes but on the flip side it's also true that we were the only people in the shop the whole time so we weren't holding anyone up or anything. Well my mother's trainee got very stressed and we had to leave the shop, followed by a torrent of abuse. It was months before he could go to the shops again.

I was amazed and shocked by what happened and was even more shocked that my mother said it happened quite often.

These days, on the rare occasions my son goes out, I see it all the time. The tutting, the comments that we're not supposed to hear, the looks. All of them in effect saying he's being ignorant. And all of them fully understood by my son, each one making it more and more difficult for him.

Next time someone doesn't react exactly the way you expect them to don't automatically think they're being ignorant. Don't get me wrong, there are a lot of ignorant people around but there are also one hell of a lot of people that need that little extra help and understanding. Don't assume, but please do bear in mind that the person you're dealing with may just be wired differently and think differently.

And always remember that it's only because they are the minority that the way you think is considered normal.



  1. Emily @limey_tocts10 May 2011 at 11:54

    Great post. Very well put.

    I have worked with people with learning difficulties and disablities my whole working life, starting out as a Learning support assistant at a special school.

    Would get very similar reactions in super markets and many "control your child" comments from the general public. Which was even more ridiculous when the kids were literally wearing labels that said they had Autism. I now work for a charity as a trainer, trying to change peoples perceptions of disability. In my experience, things are a little better now than they were 10+ years ago but there is still a very long way to go. Every now and again i am reminded of how awfully intolerant and inaccessible the world is.

    I think you're final point is fantastic and a very nice way of summing it up... any objections if i pinch it for one of my sessions?

  2. Hi Emily.

    Thank you for your kind words.

    Are things better? I'm not so sure they are personally and think the current demonisation of DLA claimants is actually making things worse. For instance a few weeks ago I was in a cafe with a friend (also a carer) and we were talking about our problems with arranging benefits. Someone walking past our table sneered that they were sick of scroungers, and when I pointed out my son was disabled and my friend looked after his elderly infirm mother we were told people like that weren't worth keeping. I'm rarely at a loss for words but I was just completely shocked by his outburst, and sadly I do genuinely believe that the attitude that people with disabilities are nothing more than a burden on society is spreading.

    As for my final point - please feel free to use/adapt it however you want. I can't even claim it as an original thought as it dates back to a module we did in social philosophy at school!


  3. You hardly need benefits to care for a selectively mute son, get a job and stop bleeding the country dry.

  4. Dear Anonymous,

    I take it with your comments about the condition Selective Mutism that you are medically trained? I also take it that you understand the underlying condition of Acute Paranoid Scizophrenia that my son suffers from as well, and no doubt are an expert in severe social phobias. Obviously someone with your level of intelligence wouldn't comment without such knowledge so if you could inform me of your medical credentials we can discuss this further.


  5. I understand all the comments and the ignorant attitudes, and it's sad to hear. But we need to make a stand and not let it go by - it is only by talking and raising awareness, like writing this article, that people start to understand. Even professionals, who you would think should know better, can begin to understand, because they and we can't be experts in everything. We have so much information these days, sometimes too much, and sometimes there may be a lot but it doesn't reach those needing it most! But until we carers start talking people won't understand. I once gave a talk about my life as a carer to an international symposium of health professionals, university lecturers & professors. At the end, one of them came up to me and said, "In my role as a consultant I have had many people come up to me and say 'I'm a carer you know!' but until I heard you speak about your life as a carer, I didn't know. I didn't understand. By giving a talk, you have shown me and the conference what it really means to be a carer!." So start talking.

  6. Hi Tren.

    Thank you for taking the time to comment.

    You're absolutely right about the lack of knowledge professionals have regarding what it's like to be a carer, but even more importantly they don;t understand how being a carer means that you have to have the complete trust of the person you're caring for and therefore it's incredibly hard to be the person pushing them. To be honest the local unit seems to think that if someone has a carer then that carer can do a chunk of their job for them but it's simply not possible. I even attended a carers day where the heads of the Mental Health Trust were there, and their lack of knowledge of the reality was as worrying as it was annoying.

    When I started this blog I never actually thought about people reading it (it was merely a little corner of the internet for me to have a good old moan) but if I've also in some little way helped inform anybody then that's all good.