Wobble Talk: "It's Okay If Your Answer Is Yes..."

Welcome to Wobble Talk!

Welcome to Wobble Talk – a space for honest conversations about life with cerebral palsy/neuro physical disability, from the perspective of people who live it!

Wobble Talk is a new online blog series for CP Teens UK exploring the ups, downs and everything in between of navigating life as a people with cerebral palsy and neuro physical disability. From the funny moments and everyday frustrations to the bigger questions that don't always have straightforward answers, nothing is off the table.

It's about celebrating the positives without pretending the challenges don't exist, challenging assumptions, sharing experiences and recognising that there's no one-size-fits-all way to live with, or to feel about, disability.

Expect a little humour, plenty of real-life stories and, most importantly, honest writing and conversations... Because life with cerebral palsy/neuro physical disability isn't always straightforward – and that's exactly why it's worth talking about.

For the first Wobble Talk, Meet Harriet! Harriet is 21 and has cerebral palsy. Through Wobble Talk, she shares her experiences of life with cerebral palsy, from everyday frustrations and funny moments to the bigger questions surrounding disability. With honesty, humour and a fresh perspective, Harriet hopes to challenge assumptions, spark conversations and show that there's no right or wrong way to feel about disability...

It's Okay If Your Answer Is Yes

By Harriet, 21

“If you could change anything about your disability, would you?”

Or, perhaps the even bigger question: “If you could take away your disability completely, would you?”

They're questions that I think a lot of disabled people have been asked at some point, or have at least asked themselves. And sometimes, it feels as though there's only one acceptable answer:

“No, absolutely not! My disability is part of who I am, and I wouldn't change a thing!”

Don't get me wrong, I think it's brilliant when people genuinely feel that way. Being proud of your disability, embracing it and recognising everything it has brought into your life is something worth celebrating.

But what if your answer is yes? What if, given the opportunity, you would change something about your disability? What if there are days when you'd quite happily wave goodbye to it altogether?

I think we need to talk more about the fact that that's okay too.

I'm 21, and I've lived with cerebral palsy my entire life. It's all I've ever known and I can genuinely say that I have a wonderful life. Having CP has brought so many positive things into my world. I've met incredible people, had opportunities I might never otherwise have had, and become part of a community that I'm incredibly grateful for. It's shaped my outlook on life, taught me things about myself and given me experiences that I wouldn't swap for anything. I don't dispute any of that - not for a second. But... does that mean I love absolutely everything about having cerebral palsy? No, of course not - because, as much as I can appreciate the positives, having a disability can also be really, really frustrating.

Sometimes, I'm fed up with things being more complicated than they need to be. Sometimes, I wish I didn't have to put so much thought, time or energy into things that other people might not even think twice about. Sometimes, I'd quite like to just do something without having to consider whether my body is going to cooperate, or whether somewhere is accessible. And sometimes, quite simply, I wish things were easier. I don't think admitting that takes anything away from the wonderful things in my life.

Yet I think there's a strange pressure, from both able-bodied and disabled people, to always present disability in a positive light. To be endlessly positive, endlessly grateful and endlessly determined to prove that we wouldn't change a thing. And whilst I completely understand where that comes from, particularly when disabled people have spent so long fighting against the idea that our lives are somehow less valuable, I sometimes wonder whether we've gone a little too far in the other direction. Because surely being proud of who you are shouldn't mean you're never allowed to find things difficult? Surely you can love your life and still wish that certain parts of it were different?

You can be grateful for the life you have without being grateful for every single challenge that comes with it.

I also think it's important to acknowledge that your answer doesn't have to stay the same. You might go through a period where you're feeling really positive about your disability, where you wouldn't change anything and genuinely feel that it's an important part of what makes you, you. And then you might have a particularly difficult day, week or month, and suddenly your answer changes. You might think, actually, yes. Right now, if I could make this go away, I would.

That doesn't mean all the positive things you've said or felt before were untrue. It doesn't mean you've suddenly stopped accepting yourself. And it certainly doesn't mean you've failed at being a positive disabled person.

It just means your feelings have changed. I think there's also a difference between wishing you didn't have a disability and wishing you didn't have to deal with some of the things that come with it.

Would I like the world to be more accessible so that disability didn't have to involve quite so many extra obstacles? Absolutely.

Would I like some things to be physically easier? Definitely.

Would I like to keep the friendships, experiences, perspective and opportunities that having CP has given me? Without a doubt.

And perhaps that's what makes the whole question so complicated... it's not necessarily as simple as a straightforward yes or no. But equally, if your answer really is a straightforward yes, you shouldn't have to write an essay explaining or justifying why.

You don't have to turn every difficult experience into a positive life lesson. You don't have to find a silver lining in every frustrating situation. You don't have to pretend that everything is wonderful all of the time just to demonstrate that you're happy with who you are. I can be proud of myself, happy with my life and grateful for everything that cerebral palsy has brought me, whilst also acknowledging that there are aspects of it I could quite happily do without. Those feelings can coexist. I don't think any of us should feel as though we have to give a particular answer to make other people comfortable.

Some disabled people wouldn't change a thing. Some would change a few things. Some would choose to take their disability away altogether. And some, like me, might find that their feelings are a little more complicated and can change depending on the day.

Every single one of those answers is valid.

Ultimately, there's no right or wrong way to feel about your disability, and there's certainly no requirement to be positive about it 24 hours a day, seven days a week.

So, the next time someone asks you, “If you could change anything about your disability, would you?”, I hope you feel able to answer honestly, whatever that answer might be because you can have a wonderful life, love who you are, appreciate everything your disability has given you, and still sometimes wish things were different.

And... I really do think that's okay!