As a child I always knew I was disabled and therefore different. I would walk into rooms and be unable to reach light-switches or see into bathroom mirrors, and have random strangers stare and ask me if I was an Oompa Loompa – in reference to the fact I have dwarfism and am therefore shorter.

I couldn’t wear the same clothes as my friends and had to get all my shoes specially made by an orthotist, which was a particular sticking point for me. Not only did my body look different – I had to wear clothes that I didn’t like and were different to my peers.

Going into hospital was a common occurrence growing up due to having kidney failure, a growth condition and chronic psoriasis. However, hospital buildings were surprisingly inaccessible – examination beds couldn’t be bought down low enough, doors weren’t wide enough for my wheelchair to fit through and at times, call buttons were left out of reach.

These regular trips to hospital combined with pain and the staring of random strangers meant disability was never something I was unaware of. However, over time it has come to be something I am neutral and sometimes even positive about.

Don’t get me wrong, I still wish I didn’t have joint pain simply after walking round the supermarket or have my psoriasis flare up the moment the weather changes, but I also wouldn’t change my disabilities and conditions for anything. They make me who I am.

Embracing disability

As I’ve gotten older, I’ve lived by the mantra ‘if they’re going to stare, make it worth their while’. Instead of hiding behind my clothes or shying away from people, I choose every day to wear bright clothes, makeup and jewellery.

Being disabled has also led to so many incredible opportunities. I wouldn’t have travelled across Europe and worked with other young adults to make resources for chronically ill people about sex and relationships. I wouldn’t have written my master’s dissertation on hospital youth forums, and I certainly wouldn’t be co-chair of the patient liaison group.

Without growing up in an inaccessible, ignorant and at times hostile world, I probably wouldn’t be as politically active and passionate as I am.

Shifting narratives

In my 24 years, I have seen the public’s perception of disability shift several times. As a young child, I very rarely saw people that looked like me in the media. It was limited to caricatures or fantasy versions, usually oversexualised, angry and with little to no agency. 

This all shifted with the London 2012 Paralympics when the likes of Ellie Simmonds were being celebrated as superheroes on our screens and on posters up and down the country. However, as with most things, this wasn’t a fully positive thing. In the same way not every non-disabled person can be an Olympian, not every disabled person can be a Paralympian. 

We are also certainly not superheroes, we are ordinary people going about our lives with education, work, friends, hobbies and challenges that everyone faces. Having our disabilities labelled as a superpower also minimises the negative impact they can have. Despite being proud to be a disabled person a lot of the time, being disabled does make my life harder. The chronic pain, extra costs, being stared or laughed at and much more aren’t superpowers. They have a real impact on my day-to-day life. 

Recently, in discussions about the Government’s Universal Credit and Personal Independence Payment Bill, disabled people are being portrayed as lazy, relying on benefits and a burden on society. It’s important to say that receiving benefits is not a negative thing. They help people to live and in some cases be independent and thrive. 

Benefits such as PIP (Personal Independence Payments) are not dependent on whether you have a job, they help you be independent and cover some of the over £1,000 extra it costs per month being disabled. 

The solution to the number of people not working is not forcing them into work by taking their benefits away. That will simply lead to more people living in poverty, and at risk of worsening health. Plus, the people pushing for these reforms seem to forget that there are many disabled people like me who do work full time but still rely on benefits to cover disability-related costs such as buying paracetamol, the cost of taxis when walking is to painful, creams that the NHS no longer prescribe and certain foods such as pre-cut fruit.

These messages – and in some cases lies – being pushed by the media and by politicians is deeply harmful. No one’s worth should be based on whether they can contribute to the economy.

Disability pride

Disability Pride Month is needed more than ever. It’s an important reminder of how far we’ve come in terms of representation, rights and accessibility but also a time to reflect on the past and what more needs to be done.

Disabled people are not a monolith, and intersecting inequalities mean some disabled people face more oppression than others. Although the lives of many disabled people have improved massively in the last decade, this is not the case for everyone in the UK or around the world.

My hope for this Disability Pride Month is that all disabled people know their worth is not tied to their ability to work and that by coming together, we will make the world kinder, fairer and more accessible for all.

Emma Beeden is a, queer, disabled and chronically ill woman. She is a co-chair of the patient liaison group