Hemiplegia Awareness Week 12-16 October 2015

12042687_178723065796086_4912301099044043762_nHemiplegia is a form of cerebral palsy caused by damage to the brain usually before or around the time of birth, but sometimes as the result of brain trauma later in childhood or even adulthood. The effects are like a stroke, with a lack of control and weakness down one side of the body – the opposite half to the injured side of the brain. One to two babies are born with hemiplegia every day in the UK and many more acquire the condition later in childhood following a stroke, head trauma, or a viral infection such as meningitis.

But it is not just physical development that may be affected. In fact, most children have additional diagnoses such as epilepsy, visual impairment, speech difficulties, perceptual problems, learning difficulties, emotional and behavioural issues. While these effects may be harder to see, they are often more significant to people with hemiplegia and can impact on confidence, education, employment, friendships and relationships.

Some of you know that my ten-year-old son, Wee Chum, experiences hemiplegia as the result of a near-fatal accident when he was ten weeks old. I won’t go into the details of the accident, as it is distressing for all involved, but what cannot be denied is the effect it has had, and will continue to have, upon his life.

Wee Chum likes video games and playing football, drawing and colouring, and running around the park with other children. He is interesting, insightful, thoughtful and kind, hilarious, feisty and argumentative. He is generally a well-behaved lad, but of course he has his moments where he is a complete pain in the neck. In short, he is just like any other ten-year-old. The only difference between Wee Chum and any other child his age, is the fact that he has hemiplegia.

There are things he finds difficult, of course there are. He faces challenges in his life that non-disabled people wouldn’t even consider when going about their days. He needs help with things that the average ten-year-old would find second nature – tying shoelaces, buttoning jeans and shirts, zipping up coats, for example – and many other things, too many to list here. But he is persistent and innovative, and constantly amazes me with new ways he’s come up with of doing things that just the previous day he had declared ‘impossible’.

I’m telling you this because I want you to know that disabled children are so much more than their disability. Wee Chum doesn’t go about the world as a disabled child, he operates within the world as a child, and most of the time he doesn’t even think about his ‘issues’. He just gets on with it. We had a conversation a few months ago in which he said something so poignant it made me want to cry; “I’m not really different, am I? I’m just like everyone else. I just do lots of things differently to other people – but I still do them, and that’s what’s important.”

I’m also telling you this because there are so many children in the UK and worldwide who experience hemiplegia, for some of whom the effect is far more profound. So I wanted to tell you about HemiHelp. HemiHelp is the UK’s national charity for hemiplegia. The charity’s aim is to support children and young adults with hemiplegia and their families, ensure they are afforded the same opportunities as their non-disabled peers and help them to live life to the full. HemiHelp provides information, supports and runs events for children with hemiplegia and their families, as well as for professionals (medical and educational) involved in their care.

For more information about HemiHelp or to find out more about hemiplegia please visit the charity’s website. If you know me personally, I will have awareness wristbands available for sale in order to raise much-needed funds for them, to support the amazing work they do with children with hemiplegia. If you aren’t local to me, here are some other ways in which you can support this valuable organisation.

If you take nothing else away from this post, even if you forget all about me, and Wee Chum, and what hemiplegia is, please remember my son’s words. He is not his disability. He is not a ‘poor, disabled kid’. He’s a human being in his own right, with the same social rights and duties, with just as much to offer this world as any other human being. Disabled children will grow up to be tomorrow’s disabled adults – adults who contribute to society in their own unique ways, just like the rest of us.

Oh, silly me. I forgot us disabled people aren’t allowed to have a good time.

I just came across this tweet from @SunderlandEcho.

I’m disabled. I am a claimant of disability-related benefits and I have a Blue Badge. I also go to concerts and smile, raise my arms and have a ‘good time’. I do these things if I’m having one of my rare ‘good days’ and it knocks me flat on my backside for several days to a week afterwards. I am enraged that the Sunderland Echo chose to run this story with this particular headline. The underlying story may well be true – she may well have committed fraud. But a few photographs of a disabled person behaving like a non-disabled person does not equal evidence of ‘faking disability’. All this sort of story does is leave disabled people petrified of leaving the house, let alone doing anything which looks like they’re ‘having a good time’, lest they have their photograph taken and lose their income (at best) or end up in prison (at worst).

What the Sunderland Echo are doing here is perpetuating the myth that disabled people ought to stay at home being miserable about the shitty lot they’ve been dealt in life, rather than getting out there and participating in society to the best of their abilities. It perpetuates hatred of disabled people for ‘getting thousands in benefits’ when we’re clearly having too much fun to be genuinely disabled. This perpetuates a culture of ableism, and hate crimes against disabled people, and frankly I’m sick of being told how I ought to behave simply because my mind and body are different to other people’s.

Caitlyn Jenner, beauty standards, and unreasonable expectations

11745959_10153462433862838_8881880467101625865_nThe media portrayal of Caitlyn Jenner is problematic because it perpetuates several cissexist ideas about transgender people, and cisnormative ideas about beauty and femininity. I want to preface this by stating I have nothing against Jenner personally, but I can’t help but recognise that her experience of transition is not as universal as the media would have us believe, and I can’t help but see that her financial situation and whiteness massively privilege her over the majority of the other transgender people on the planet, particularly trans women of colour and poor trans people.

In a world in which our absolute and only goal in life is expected to be ‘passing for cisgender’, she burst into the newspapers having transitioned – transformed, even – completely. She is a media darling because, where so many of us don’t fit the cisgender-person-shaped mould that we are expected to force ourselves into, she meets the societally acceptable standards of femininity and beauty that mean she is ‘a worthy trans person’. She’s white, she’s slim, she has the ‘right’ amount of chest, hips and cheekbones. Many transgender women are never going to look ‘like cisgender women’ – hell, there are many cisgender women who don’t fit that narrow description! But Jenner has had the ‘right’ surgeries and the ‘right’ amount to make her look acceptably ‘feminine’.

There’s this idea that trans women were men and are now women (and conversely, that trans men were women who are now men); among the people who accept us for the gender we say we are, at least. Suddenly, Jenner appeared on the cover of a magazine as Caitlyn with no sign of the steps that got her there – not that she owed us those, of course! But the way her transition has been reported is the only palatable way for the cisgender media and society in general to cope with us. She “was a man”, she “had a sex change” and “became a woman” completely. There was no in-between. There was just man and then woman and never the twain should meet.

This ignores many truths. That for many transgender people, medical transition simply isn’t possible for financial, social or health reasons. That pre-medical-transition and non-medical-transition transgender people are just as valid in the genders we identify with as anyone who’s been through ‘the full change’. That many of us are never going to ‘look cisgender’ no matter how hard we try (or don’t – the point is that we shouldn’t have to). That many of us are not doing a straight binary swap from one presentation to the other, that non-binary, genderqueer, and other gender-nonconforming transgender people exist. That it’s not always the case that transgender people want only one thing in life: for people to think we are cisgender.

We need to change this narrative that implies that transgender people want nothing more than to ‘pass’ as cisgender. That’s such a ridiculous concept; what exactly does a cisgender person look like? What is generally meant is that we are supposed to desire a result where nobody would ever guess our assigned sex at birth. Wouldn’t it be better, though, if instead of struggling to attain near-impossible standards of acceptable appearance, we changed the world which applies ‘masculinity’ and ‘femininity’ to perfectly innocuous features of the human face and body? If we could redefine what it means to ‘look like a man’ and ‘look like a woman’? A transgender woman will (and should, to the world) always look like a woman, because she is a woman. Even if she chooses to avoid medical transition and grows herself a beard, she will still look like a woman, because that is what she is.

Sadly, we live in a world where people would tell my hypothetical transgender woman that she ‘looks like a man’ because we’re drip-fed gendered norms from the moment we’re born. Aged four, my son called a cisgender man “she” because he had long hair. This is not an unusual mistake for a small child (or even an older person) to make, because from a young age we are taught that this feature means man, this one means woman. Infants pretty much all look the same, they certainly don’t have features that can easily be gendered. Yet my son, when he was a baby, was “strong” and “handsome” when read as a boy, and “delicate” and “pretty” when read as a girl. People internalise these false ideas that certain features indicate certain genders so much that the same baby was described in totally opposite ways by different people, based on nothing more than whether I’d dressed him in purple or brown that day.

This is my problem with the Caitlyn Jenner situation. Her transition was received with overwhelming positivity by the media and society in general (although naturally not everyone ‘approved’) and I wonder how well she would have been received were she not slim, white, and above all, ‘pretty’ by cisnormative standards. I wonder how well she would have been received had she come out at the beginning of her transition, before she had undergone the hormonal and surgical treatment which helped her to ‘pass as a woman’ according to cisgender people’s flawed ideals. I’d like to see a shift in the general perception of what it means to look like a man, and what it means to look like a woman, so that instead of being expected to spend our lives chasing the fallacious concept of ‘passing’, we can just be accepted for who we are without question.