Written by Katy Evans
The theme for Disability History Month 2023 is disability in childhood past, present and future. Although Spokz People works with disabled adults, we know the experiences disabled people have in childhood shape their lives and how they feel about the world. Katy shares what she wishes she could tell her younger self. We invite people to share the messages they would give to their younger selves. You can share your messages on our Twitter or Facebook posts.
Being Different
Being disabled feels like the worst thing in the world right now and you would do anything to change it. The children in the playground won’t let you play their games because they tell you that you’re different. You spend most playtimes sitting alone and watching how perfectly they move their bodies in ways that you can’t. You wish you could be anyone but yourself.
I want you to know that it won’t always feel this way. You will eventually meet people who accept you for who you are. You will make friends with other disabled people who become like a second family to you and will show you hacks that make life easier. With them, you’ll have adventures which the world tells you are impossible and so so many laughs.
In time, you will mostly stop noticing the stares which hurt so much at the moment. You will grow to embrace being different. You will wear bright clothes and have a pink wheelchair with rainbow wheels. For a short time, you will even have pink hair!
Wheelchairs are Freedom
Right now, all the grown-ups are telling you that walking is the most important thing and they spend a lot of time getting you to practise it. They mean well – in their world walking is the only way they know, and they struggle to imagine anything else. You feel frustrated because all the children around you have the same arms and legs as you, but are able to use them in ways that are impossible for you. You think it’s something wrong with you so try extra hard in physio, but every step remains a painful struggle and the hours standing in front of the mirror do nothing to stop you leaning too far over or your knees knocking together.
It’s already secretly on your wish list but in a few years’ time you’ll get your first electric wheelchair. You’ll be confused about why so many adults think it’s a bad idea and tell you not to use it too much. You are yet to learn that sometimes adults are wrong, even when they think they are helping.
Don’t be ashamed about loving your wheelchair. A series of wheelchairs will take you on adventures you can’t imagine right now, from walking across London, to travelling abroad, to climbing mountains. One day you’ll have the most amazing dog trotting alongside you, and she will favour the speed of your wheelchair over people who walk.
Fighting for Rights
As soon as you were born you have had to fight for your place on earth and it should never have been that way. I’m sad to say that there will be many more fights in your life, but you won’t have to do them alone. You will meet other people who are fighting too. They will give you advice and listen to your frustrations. It’s exhausting and unfair that everything is a fight but I can assure you that every fight is worth it.
You have already accepted that not being able to walk properly means you can’t go into some places. It won’t be until you are 17 that your concept of the world changes when you learn about the social model of disability. You’ll learn that it’s the fault of the people who made the building that you can’t get into it, and not your legs. You’ll test out this newfound power by telling Pizza Hut that you are not a fire hazard. This will set you onto a path into advocacy and disability activism. You will be paid for doing work you feel passionate about, and it feels good to know you are helping other disabled people.
From day one, there have been lots of professionals in your life. They are trying to help but it often doesn’t feel like it. Many times, you have had to walk semi-clothed in front of doctors you don’t know the names of, had painful touch whilst being told not to cry and been given no choice over who helps you to dress and takes you to the toilet. You accept this as normal and mentally separate from your body with disastrous consequences. It will take many years to feel safe in your body again. You will find it hard to accept it when men find you attractive because you have been told too much, and in so many ways, that your body is wrong. You have been led to believe that disabled people don’t have romantic relationships. This is a lie and, after some sadness for lost years, you’ll throw this concept away.
Low Expectations
Not everyone in your life, but some people, will have low expectations of what you’ll grow up to do. They are not being mean. It’s hard for them to imagine what they cannot see – the lack of disability representation affects them just as much as you.
You will spend your first few decades of life doing everything you can to prove them wrong. Whilst you make some headway, they will never truly understand, and battling against that is exhausting. You will eventually find peace in being enough and being truly seen by some wonderful people. This will hugely lessen the impact of people who don’t understand.
Contrary to the future that is being predicted for you right now, you will grow up to live an extraordinarily ordinary life. You will go to university, learn to drive, have your own house, write things that get published, have varied jobs and ultimately you will be happy with who you grow up to be. Cerebral palsy isn’t the problem that others make it out to be.
