People often offer sympathy and tell me how sorry they are. I often get told how brave I am – just for living with Cerebral Palsy. But I don’t see my disability as a tragedy – it’s just a part of who I am.

The Good

In all of these comments is the assumption that my wheelchair is something that confines me. Again, I don’t see it that way. My wheelchair enables me to live an independent life – to work, travel, to be a parent. For me, my wheelchair symbolises freedom – not oppression.

There are other positives too. My boys have grown up understanding that people are different. They notice accessibility issues and they realise when something isn’t fair. They understand that disabled people don’t need pity or sympathy and they recognise the barriers in society that make life unnecessarily harder for disabled people.

There are people who will go out of their way to be kind and advocate for me – like the lady a week or so ago who told all my fellow passengers to let me on the bus before they bustled on! Her intervention was very much appreciated and made life that day much easier!

The Bad

But there are inevitably bad bits too.

There are still so many people who think I can’t speak for myself and they direct questions at my hubby  or whoever happens to be with me. Apparently, using a wheelchair often renders you temporarily invisible. Who knew Cerebral Palsy had such impressive superpowers?!

Thankfully, I’m confident enough to butt in and make it clear that I’m capable of speaking for myself!

Then there’s the ridiculous amount of time I spend navigating completely unnecessary barriers. Pavement parking is one of my favourites. A car parked across the pavement can turn a five minute trip into a hunt for a dropped kerb and very often, a dangerous detour into the road because it’s my only option.

None of this is caused by my Cerebral Palsy.

The Completely Ridiculous

And then we come to the ridiculous.

A few years ago, my wheelchair broke down and I was left completely unable to leave the house. I was told it would probably be weeks before it was fixed.

I can’t even begin to explain the frustration of being told that your independence is effectively being taken away from you for an unspecified amount of time — and that you are somehow expected to accept this calmly.

Imagine being told, “Your legs are out of order. We’re not sure when you’ll get them back. Could be a few weeks. Try not to get too worked up about it.”

Or perhaps, “Your car is broken, there are no buses, taxis are unavailable and you can’t walk anywhere — but do try to relax.”

At one point, I was actually told to calm down.

I remember thinking: of course. Why didn’t I think of that? A cup of tea, a deep breath and suddenly being trapped in my own home will seem perfectly reasonable.

The ridiculous part wasn’t that my wheelchair had broken. Things break.

The ridiculous part was how normal it seemed to everyone else that I should simply lose my independence for weeks while I waited for it to be fixed.

And these moments are unfortunately very common.

Accessible toilets being used as storage cupboards.

“Accessible” entrances that require someone else to open them for you.

Ramps so steep you’d think they were designed with Olympic ski jumping in mind.

Individually, some of these things make me laugh – especially when you turn up to deliver disability equality training and can’t access the venue!

But when you’ve encountered such barriers repeatedly for over 40 years, it often makes me want to cry.

But here’s what’s important: the good, the bad, the absolutely ridiculous – it’s all shaped the work I do today.

Those experiences are why I talk to schools about disability. Why I train organisations. Why I work with universities as an Expert by Experience. Why I talk about accessibility, inclusion and the importance of listening to disabled people.

A lot of my work is about trying to make things better for the people coming behind me.

I can’t change the fact that I have Cerebral Palsy.

I wouldn’t particularly want to.

But there are plenty of things around disability that absolutely can change.

And if sharing some of the good, challenging some of the bad and occasionally laughing at the ridiculous helps that happen, then I’ll keep doing it.