No one is here forever

How are you a disabled person?

I was diagnosed with Ehlers Danlos Syndrome, (a collagen disorder affecting skin, joints, gut and other things) having run a half marathon and left myself with long term injuries following some kneecap dislocations. Since then, my joints have become gradually less stable, and I now use a powerchair or sticks to get around.

What was your initial reaction to your diagnosis?

I think initially it was one of relief that there was something wrong with me, and there was a name for it. Having an undiagnosed condition is a very lonely and isolating world, with little support available. The practicalities of how my life was going to work with a disability were my major concern, as I’ve grown up with a disabled mum and so know the huge barriers disabled people still face every day.

What concerns did this raise for you as a newly qualified doctor?

Simply getting around was a major concern, having to crowdfund a wheelchair in order to do so was not how I planned to spend that year of medical school! Also, the fact that I’d never met another disabled doctor before, so I had no one to turn to for advice or reassurance initially. It turns out there are quite a few of us, but I had no idea at the time!

How would you describe your ambition and purpose for your career?

I have to be quite realistic about the future of my clinical work; my condition means I experience regular joint dislocations and other injuries, so I probably won’t be able to work as a doctor forever but I’m determined to keep going as long as I can because I really love my job! My other passion centers around making the world a better place for disabled people. I know I’m in a privileged position where I have a platform and the ability to highlight iniquities as I experience them, so I hope to continue doing so (however ‘difficult’ that makes me!). I love politics, so fully plan on developing my career in that direction.

What problems need to be solved to ensure equity for those with disabilities?

Where to start?! We live in a world designed without disabled people in mind, and as such, even the simplest tasks for other people, such as getting across London or popping to the supermarket, can be huge challenges for us. But there’s a relatively simple solution – involve us at every level!

I’ve had so many difficult experiences in terms of the most basic tasks such as train travel; I’ve been left on trains, and at some points have had to travel using my sticks rather than my wheelchair because I’m just so worried about how I’m going to manage the journey on wheels when I can only access ¼ of the tube system. This leaves me in a lot of pain, and far more vulnerable to injury, but I refuse to stop living my life simply because the world isn’t ready for me yet!

What frustrates you the most?

People speaking to me differently because I’m disabled or patronising me because my body is different. I have ten years of university behind me, I’m a doctor, and I’m an effective campaigner. I’m not ‘lesser’ because of my disability, I’m different, and, my disability has led to a range of experiences and knowledge I’d never have had without it. My disability can be an asset, so don’t pity me.

What are the challenges in making the public aware of your work?

I used to feel I had to prove myself constantly, to challenge assumptions. Part of me always will feel this way a little, but now I focus on doing what I can to make the world a better place and give a voice to people who struggle to find adequate representation in other ways. I try to keep my messages varied, to use humour and embrace a variety of media to get my work out there; but it can be hard to keep up with everyone and everything – I really need a PA!

What keeps you going?

I’ve been brought up around a sense of vocation; my father is a priest, and my mother goes above and beyond in her role as a “Vicar’s Wife”, whilst also volunteering in several roles. I’ve never been motivated by money, but more so by an altruistic desire to improve and impact change in the world. I think having lost two younger brothers, I’m very aware that no one is here forever, and what really matters is what we achieve in our time here.

Why did you choose to be an Ambassador for your chosen charities?

Well, I had the privilege of being asked by both, quite unexpectedly, and as with most of my charitable escapades, couldn’t bear to say no! They really are the perfect fits for me; MyAFK works to get young people mobility equipment they need and to support those with intellectual disabilities into work, which are both areas I am passionate about. The Eve Appeal is all about fighting the five Gynaecological cancers, improving access to smears, and encouraging education. I’ve recently been campaigning to make GP practices more accessible to disabled people for examinations, and cervical smears are a key example of where improvement is needed, so it’s great to be working with such an enthusiastic and dynamic charity on this!

What can we do to help?

Look around you. Are the 13.9 million disabled people who live in the UK represented on your board, your executive committees? If not, ask why the 1 in 5 is not represented in the room. And change this.

What key message do you want to highlight?

Disabled people bring something unique. We are Nature’s problem solvers, because we live in a world designed without us in mind. Involving us in your discussions and workplace is not about doing us a favour, but about ensuring you aren’t missing out on an exciting and different way of thinking.

Twitter: @HannahPopsy

Facebook: www.facebook.com/HannahBarhamBrown

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#ARM2019 part 1… what a four days in glorious #Belfast. Some hugely important motions discussed, connections made, plans created and friends seen. I was delighted to get to speak twice; the first speech I made was in support of the BMA monitoring drug shortages and highlighting these, particularly given the huge implications of #Brexit (particularly a no-deal Brexit) on these. Most importantly, it was fantastic to have the new contract for junior doctors in England agreed by 82% of voters, meaning we are finally coming out of dispute with the Government, and able to put in place some of the huge benefits we have managed to achieve for members and non-members alike. I also played on a massage chair, had some new headshots taken by the incredible Emma Brown, took my amazing chair from @tgamobility clubbing, and stole Jeeves’s glasses. Obviously.

A post shared by Hannah ‘Pops’ Barham-Brown (@hannahpopsy1) on Jun 29, 2019 at 8:13am PDT