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Diff-ability & Me: when someone else says what’s in my head!

Did you watch Alex Brooker: Disability and Me on BBC iPlayer? I caught it last weekend and I’m so glad that I did.  I have rarely watched anything about disability that I could fully identify with. But this was like someone being inside my head and knowing what I feel.

This programme gives you a good understanding of what being different feels like – and how easy it is, when you’re born with a disability, not to actually know that much about it or have really considered its impact on who you are.

I can’t possibly share everything about this programme in a blog post. Nor should I, when the best advice I can give is to watch it here.  But it’s inspired me to talk about how I relate to what he shared about being different.

1. It’s a personal journey and we’re all differently disabled

I had not met any adults (that I knew of) with hip dysplasia until I started this blog and joined the Steps Charity facebook group. What strikes me in those forums is how different the challenges are that people face, who all have the same condition. Many other ‘hippies’ who read my blog could not envisage walking the South Downs Way.  Others do a whole host of physical activities I couldn’t comprehend.  

I loved that Alex started and ended this documentary by simply saying he wasn’t trying to be the voice of all disabled people, he was just one person trying to learn more about himself, his own disability, and how it impacts him.  I started walking and blogging for exactly the same reason.

2. It’s very possible to know very little about your own condition

Watching Alex tell his Mum to come into the doctor’s appointment with him because she knows more about “his challenges and what-not”, made me feel a whole lot better about my own lack of knowledge about hip dysplasia.  For the first three blogs I wrote, I even think I’d mis-spelled it! 

I grew up knowing I was differently-abled and knew the term CDH, but for the first 16 years of my life, the doctors all spoke to my parents, not me, about my condition. I loved visiting Sheffield Children’s Hospital for check-ups because they had new toys and other kids there had funny legs that looked like mine. But I couldn’t possibly comprehend the discussions and decisions being taken. I remember having more curiosity when I had my leg lengthened aged 16 – and in the end watching the surgical teaching video of the operation beforehand – but it was my parents, not me, signing the consent form.

The first time I became conscious of how little I knew about my own body and history was when, aged 32, I went to the first consultation about my hip replacement. Mum and Dad weren’t there. Suddenly I was discussing the options, making the decisions and signing the consent form complete with the list of all the things that could go wrong. I suddenly understood the emotional impact that this must have had on my parents. As Alex did with his mum on their return visit to Gt. Ormond Street.

3. Being a diff-abled teenager is hard

Both Alex and those he interviewed who’d been born with their disability, said that they had the hardest time as a teenager. And boy do I remember that!

Paralympic swimmer Susie Rodgers shares with Alex how she even stopped swimming for a while, because at that age you become hyper-conscious of how your body looks and you don’t want people staring. 

Whilst other girls’ legs were becoming beautiful, shapely assets, mine remained spindly and not straight right through school. Aged 13, I actually won a knobbly knee contest at the local working mens club! My DDH bum is flat as a pancake and there are no curvy child-bearing hips.  As far as my lower body is concerned, none of the assets that attracted boys were there.  Definite wallflower territory!

Being really physically different is not the same as choosing to stand out by dying your hair blue.  There’s this extra layer in trying to decide what your identity is – where does the disability fit in?  How much do I want it to define me?  Do I want to hide it (quite hard) or share it?  Do I try and prove I can do anything others can, or do I protect myself from situations where I might be physically challenged?  I do both, for the record!

4. Unspoken fears for the future

The part in his documentary where Alex gets most emotional is when he admits for the first time that he fears how his young children’s reaction to his disability might change as they get older. What will they think when I can’t do what the other dads can? He also shares how hard it is to watch doctors check his new-born’s arms and legs to check they’re “not like his”.

I never had children.  I was clear from a young age that I didn’t want to.  Part of that decision was very definitely about my hip-dysplasia.  I remember discussions with doctors and my dad about whether I could biologically have children and of course the answer was ‘as much as anyone else’.  But try and have them before a hip replacement.  And obviously with your particularly bad hips and part of your pelvis missing, you might find it harder to carry the weight or have a natural birth.  

I’m sure all of that had an impact on my decision.  And I also recognise not wanting to be a parent who can’t do what the other mums can.  Carrying any weight is no fun for me. I’m so grateful for Tesco deliveries because food shopping used to be a nightmare. The thought of lifting a toddler, then trying to walk and not fall over and injure my child, was always in my mind.  In the end I figured that just myself was enough to look after and keep upright.

And the final fear is what will happen to my joints when I get older? When I was 16 I was informed that it was the norm to have no more than two hip replacements, each would last 10-15 years and then that would be it.  In my young head that had me in a wheelchair by mid-40s. That fear drove me to seek to achieve more and more, quicker and quicker – like a ticking clock to get everything done before I can’t walk any more. I still sometimes think “when do we need to move into a bungalow so I’m prepared for the day the stairs are too much trouble?”

Of course, having watched elderly parents, or just friends who used to be runners then injured their knees, I can see that this isn’t a disability issue but more of an ageing issue for everyone.  It’s just instead of starting to think about it in mid-life, I’ve been thinking about it since I was 16.

5. Superhumans struggle with real life too

As a marketer I find the way disabled people are portrayed both fascinating and frustrating.  Most often you are presented with people who are either severely immobile and housebound or the SuperHuman Paralympian.  Very little in-between.  The Paralympics in 2012 was fundamental in its representation of Ability not Dis-ability and I’m so glad I got a ticket to cheer the Paralympic athletes at the Olympic stadium.  But it’s as hard to live up to being a SuperHuman as it is for most Sunday runners to compare themselves with Mo Farrah!

So it was brilliant to hear Susie Rodgers tell Alex she still finds it annoying that she can’t do some things and how that does not feel at all super-human. In reality she is super-human at one thing – swimming.

I still can’t push a shopping trolley without ramming people (you use your hips to steer); it’s really hard to cut my toe-nails or tie shoe laces; I have a minor panic attack if I have to walk upstairs when the handrail is on the left not the right, or game-over if I also have a bag to carry up the stairs.  And yet I walked the South Downs Way which inspired myself and others.

Thank you – to You and to Alex Brooker

First off, thanks for reading this. It turned out to be a long one!

I was just so inspired to write this because of Alex’s documentary. So a huge thanks to him too for sharing the normality of being different. If you get an hour, do go and watch it here.

And if you want to follow my walking challenges follow @WalkingJill on Facebook here or click here to donate and support Steps Charity.

Until the next time….  Love to you all xx

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