Perceptions of Disability

    I have dyspraxia & OCD (and some Aspergic traits thrown in for good measure), which have one thing in common; they are all "invisible" conditions. If I was sat quietly in a room, and concentrating on my expressions and movement, then it's possible you wouldn't have a clue that I had these conditions.

    It's not just these conditions, of course, that are invisible; everything from diabetes to Deafness is not visible by just glancing at a person. Of course, in certain circumstances, there are subtle clues and hints that knowledgeable people can pick up on, but in the everyday world - a friend of mine twigged that I had dyspraxia before I'd even said anything, but then again, she is a medical assessor.

    Being able to "hide" a condition can be nice, sometimes; it enables me to maintain my privacy should I choose. On good days, when the sun is out and the wind is light, I can appear almost ... ahem, normal ... and people wouldn't think any different about me to the next person. When I was younger, I was very sensitive about that. Now, my philosophy can be summed up by one word ... "meh". It doesn't bother in the same way it used to, and I'm a lot more open about my condition (as regular readers of my blog will know).

    One thing still bothers me, though, and I can't help but get annoyed at it. It's when people assume; they assume that a Deaf person is stupid because they can't automatically lip-read, they write a dyspraxic person off as clumsy and worthless because they can't catch a ball or think that because you rely on routine to get through the day, that you can't ever do anything new. Instead of thinking, "Oh, maybe that person has a disability", and adapting their worldview to take into account someone else's perspective, some people just assume - and get it seriously wrong.

    I'm fortunate to have Deaf friends; they're not my friends because they're Deaf, but their Deafness is of the things I know about them, as well as their eye colour, height and job. They're as - and in some cases more - intelligent as me, and just because they can't hear doesn't make them any less of a person. If someone's looking away from you and they ignore you when you call their name, have you considered that they could be deaf?

    For me, I've become quite good at "hiding" my condition - sometimes, you wouldn't think there was anything "wrong." I tell people if the conversation comes round to it, but never make a fuss - and so people are often surprised when I do mention it. Why do I hide it? Habit, mostly - because, at school, I hated the thought of being treated differently ... and I still do! I've been fortunate in that the overwhelming majority of people I meet couldn't give a ha'penny damn; on the flipside, there have been (thankfully rare) occasions where people seem to struggle with understanding ... well, me. I get annoyed when that turns into thoughtlessness - when they don't think I might need some extra support or patience occasionally (which can happen occasionally - even I have to remind myself I'm on the mild end of the autistic spectrum and sometimes need to pace myself).

    I must reiterate, though - that's thankfully rare (but tiring when it happens!). Most people are great - and recent conversations with new and old friends recently have reminded me that there are people out there who care and want to understand. You may not know who you are, but you rock all the same.

    You'll find a lot of similarities between people with "invisible" conditions - oftentimes, they don't make a big song and dance about it. They might feel frustrated in private, but it remains just that - private. I'm quite a private person, so that's how I am, but I wonder if we don't always do ourselves a disservice by not broadcasting when something - or someone - has been insensitive.

    That's the main reason I'm writing this blog; as a way of trying to raise awareness and show that I'm not fundamentally different. Yes, I may look at the world in a different way sometimes - but then, don't we all? What's my disability got to do with that? Let's start pushing back against those people who make assumptions - let's start gently reminding them that just because someone is Deaf, or dyspraxic, or ... well, anything across that spectrum, they're still people. Let's get that small minority of people educated!

Heroes & Helping Children

    I met an old school teacher of mine today who made me think about my own childhood - for the first time in ages - and how children with autistic conditions are given structure and discipline through education and their families.

     You may have heard of Dr Temple Grandin, who is a hero of mine. She is a doctor of animal science, a professor at Colorado State University and a consultant to the livestock industry. She also has high-functioning autism - and her ability to cogently discuss her own view of the world, whilst "feeling the fear and doing it anyway." Seriously, she is an awesome woman - I recommend her wiki entry (http://en.wikipedia.org/wiki/Temple_Grandin) and this speech she gave (http://www.youtube.com/watch?v=2wt1IY3ffoU).

    The reason she is one of my heroes is because of her ability to successfully weave her jobs in with her condition and become incredibly successful with what she has done. Also, she’s had a very supportive family around her, who have fought for her all the way, and had teachers right from the word go who set her consistent boundaries and gave her a firm framework to work within. Although she admits that her high school days were the “worst of her life”, she also acknowledges that she had a lot of supportive mentors right from primary school – and a mother who never stopped believing in her.

    I’m fortunate too; I’ve got a family who are incredibly supportive of me, with parents who have always been there for me (although I suspect they might well have considered adoption if I’d pushed them much further!). They gave me boundaries and a structure to my life which I needed; although I often pushed back against those boundaries, and tested my parents’ patience to the limit, to know I had that structure whilst I was struggling to understand my dyspraxia meant more to me than I’ve probably admitted in the past.

    I’ve met children with autism-spectrum disorders who can often appear out of control, and when you speak to their parents, you get the response; “It’s not their fault, they’re autistic.”

     As you may have guessed, I disagree with that statement!

    While I accept that autistic-spectrum children may well need to be approach differently in some regards, they still need guidance, support and discipline from adults. I know how tough it can be – I look back through my rather jumbled memories and see how much my parents must have had to deal with – but that doesn’t mean it shouldn’t be done.

    Just because you’re on the autistic spectrum doesn’t mean that your behaviour should be "excused" – by anyone. Whether a child has autism or not, they can be shown how respect and manners can be an important part of their life. Yes, it might be harder work, and yes, extra support is vital, but no-one should be left out of learning anything just because it's more difficult.

    My cousin Tom is 6 and has autism – and is a lovely boy. He has two parents who love him intensely and have given him a basis to his life that he can use to develop his own skills, likes and dislikes, and friendships – like any other children. Before Tom came along, his parents (like a lot of people) didn’t know much about the condition, but threw themselves into learning about it, so they could manage its impact on their son and themselves. By understanding how Tom feels, and why he reacts to situations in certain ways, they’re giving him the best chance in life to become whoever he wants to be.

    Whenever I hear someone say “Oh, they’re autistic / have Asperger’s / are dyspraxic” in relation to a child, I almost hear a verbal shrug behind those words. Living with the condition is tough – I’m dyspraxic, so I understand – but I’ve had the support and love of people who have never used that verbal shrug about me. I’ve been taught that it's good to have ambition, and that I can achieve anything - and never to think I’m second-best because I have dyspraxia.

    Talking to my ex-school teacher today (Mrs Brown, who I still think fondly of even after 20 years have passed), she commented on the children she had seen pass through the school gates with a variety of conditions, and some of the strategies she’d developed in order to teach and inspire them. There are a lot more teachers (often unsung) out there, who inspire their own students in the same way, and I applaud their tenacity. To have teachers who are champions of equal access to education is what it should all be about – for me, Mrs Brown eased my entrance to secondary school with a kind word and a supportive attitude and, while my school days were never the happiest, teachers like her made it all the more bearable – and sometimes downright fun!

    Children deserve the best start in life they can possibly get; I was very fortunate to be loved and supported by my family, and it's wonderful to see that, as understanding about the autistic spectrum develops, so does the support network for both people with the condition and their families.