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Disability and work: Let’s stop wasting talent | Hannah Barham-Brown | TEDxExeter

Disability and work: Let’s stop wasting talent | Hannah Barham-Brown | TEDxExeter


Translator: Riaki Poništ
Reviewer: Tanya Cushman So I roll onto the ward one day, and this elderly patient
takes one look at me and yells at the top of her voice,
“What’s wrong with my doctor?” (Laughter) The whole ward falls silent. (Laughter) And from her bed,
she continues to stare at me. “I said, what’s wrong with my doctor?” Ongoing silence because no one knows what to say. So I roll closer towards her,
reach out and take her hands. “Well, I’m quite disorganized, (Laughter) I’m very loud, and my legs
don’t really work. Now, how are you feeling today?” I wasn’t always disabled. For the first 27 years
of my life, I was “normal.” Well, I say normal. I was so normal that when my disabled mum
tried to yell at me, I’d just run up some stairs
so she couldn’t chase me. (Laughter) I was so normal that when my baby brother, Theo,
died when I was 23, I baked cupcakes for three days straight. Because sugar solves everything, right? And then I went back to my nursing degree. Somehow, caring for other people’s babies helped me recover when we lost ours. Two years on, and I moved to London
to start medical school, finally fulfilling a long-held dream, and life made sense, at last. But back in Newcastle, my eldest brother’s heart
was starting to fail, nine years after a life-saving transplant. Gareth died in the early
hours of Boxing Day. He was 24, I was 27, and I was devastated. To regain some sense of purpose, I ran a half marathon
for the British Heart Foundation, running through a lot
of emotional and physical pain, trying to process some of the grief
that had threatened to overwhelm me. But while mentally, I started to recover, physically, something
was going very wrong. All my life, I had been really flexible. But it turned out that the bendy joints I’d always thought of as an asset
in my ballet classes were actually the sign of a syndrome
so rare most people can’t pronounce it, let alone spell it. Ehlers-Danlos syndrome
had become a part of my life, and life would never be the same again. Now, I learned a lot
in that year of medical school, but a key lesson was this: if your kneecaps dislocate while you run, that is decidedly not normal. (Laughter) I had gone from running
charity events for other people to crowdfunding my own wheelchair just so I could finish
my course and qualify. Suddenly, I was the charity case. My diagnosis changed everything. I’d catch my reflection in a shop window and not immediately recognize the woman
with the walking stick looking back at me. In my chair, I’m a few foot shorter
than everyone else, I struggle to hear,
to sidle into conversations, and I live in fear
of rolling over people’s toes. It battered my self-confidence. I thought nobody would ever
look at me in a wheelchair and fancy me ever again. I couldn’t believe that anyone
could ever think of me as sexy. But worst of all, as a doctor, I know how EDS can progress. Every injury feels like
another step to the day when I’ll have to call time on medicine. But in many ways,
getting my diagnosis was a relief. I wasn’t going mad; my body was not normal, and now I had a name for that. I could access the support I needed. Four years on, and I’m in constant pain. Something always aches
or throbs or spasms, and I wake up every morning not knowing what surprises
my body is going to throw at me. A daily unlucky dip. Except, in many ways,
I’ve been quite lucky. I have grown up with my own role model. Get it? (Laughter) My tenacious and, frankly,
terrifying mother. Now, mum has challenged stereotypes
for more years than I’ve been alive. Having grown up watching
her disabilities slowly progress, I never thought
of disability as a weakness or as something that stopped
a person from doing anything because disabled people
are just people like my mum. She has had four children, has so many letters after her name
that both of us have lost count, and now spends every day using her skills
to make the world a better place for some of the most
vulnerable people in our society. So I wasn’t going to get away with using
my disability as an excuse to not succeed because mum would never stand for that, though in fairness,
she rarely stands at all. (Laughter) 18 months after my diagnosis,
I qualified as a doctor. And now, I’m a trainee GP. There aren’t many doctors in wheelchairs. I’ve become a bit of a novelty
wherever I go, and you know what? It’s bloody exhausting. Sometimes, I don’t want
the double takes as I roll in, or the questions
or the well-meaning comments. I’ve had a very mixed response
from my patients, and even some of my colleagues
have been less than welcoming when I roll in and introduce myself. But why am I such a surprise? There are 13.9 million
disabled people in the UK. That’s one in five of us. One in five. And yet, the disability employment gap
currently stands at 30%. That’s the gap between the number
of disabled people in work versus the number of able-bodied people. And I want to change all that. I want more people like my mum,
like me, to be visible – in medicine, in work, and in society – because we are here. But we’re rarely seen or acknowledged. So I have become focused
on being a role model. So why is this important? This is important because I have seen the eyes
of kids in wheelchairs light up when their doctor rolls in
in a chair, just like them. Suddenly, they’re not the kid
in a wheelchair anymore. They are the kid who could grow up
to be whatever they want to be regardless of their legs misbehaving. It’s that spark of self-confidence even when the world
is telling you you’re different. That spark is life changing. Becoming disabled does change you. It’s changed how I speak to people, and it’s sure as hell changed
how people speak to me. One day, a patient who’d had
a really tough few years opened up to me in a way
she’d never spoken to a doctor before. And at the end of our conversation,
she reached forwards. She took my hands and said, “See, I know you get it, Doc. Because you’re broken just like I am.” Sometimes, I am broken, and that’s OK, because my brokenness gives me a unique ability
to connect to my patients: as that patient realized, I get it. I have an intimate knowledge of their experiences and the systems
they are forced to work within. In the last few years, we’ve seen a greater push
towards having more inclusion, having more voices of disabled people
in the conversation along with other voices
you may not always hear, and these voices are important. And the tick boxes,
the diversity tick boxes that I worry people are filling
when they invite me – those tick boxes are important, and they are a vital safeguard
for many of us, but they risk watering down
the richness that our voices bring. We should be included in the conversation because our skills and our knowledge
and our perspectives are invaluable. Every job advert you see will say that a company
is looking for problem solvers, people who think outside the box,
great “team workers.” Well, we are nature’s problem solvers because we live in a world
that was designed without us in mind. I’ve developed phenomenal
problem-solving skills because the world
has not given me the option. I can access about a quarter
of London’s Tube system in this thing. And yet, I will always
find a way round town. We excel at teamwork because we’re comfortable
communicating our needs and making practical assessments
of who is best suited to different tasks. Companies should be begging
people like me to work for them because what we have to bring is exciting, is under-recognized,
and woefully underutilized. We do so much more
than tick a diversity box. Ultimately though,
I’m not just a disabled doctor. I’m not just disabled. I have so many other things
I want to talk about, and boy, can I talk. I am outraged that a caring profession like medicine
is seeing a spike in suicide rates because we are so burnt out
and under-supported. Having lost a brother who was waiting
for a second heart transplant, I passionately want more people
on the organ donor register. And don’t even get me started on Brexit, (Laughter) which threatens to decimate the NHS
that every politician claims to cherish, and could be catastrophic
for our patients and staff alike. Now, none of these things have got
anything to do with my disability, but I will pop up on TV
or in newspapers talking about them, and yes, I will be in a wheelchair. And people will see that, will see me in a wheelchair, talking about something
completely unrelated. I will once again be “normal,” right? Except I never was normal, was I? And you know what? None of us are normal. We are all different, and we are all hugely valuable
to society because of that. We are a beautiful,
diverse collection of differences, and it’s time we made the most of that. So let’s go beyond normalizing difference. Let’s start celebrating it. (Applause)

Comments (22)

  1. You're doing a great job at repping the NHS and being an advocate. Keep on at it!

  2. Wonderful combination of bravery, humour and revolution

  3. A challenging talk. You put so much into it, I hope people are receptive to that.

  4. 👏👏👏👏

  5. This is truly brilliant. I hope that you do many more Ted talks

  6. Brilliant, Hannah. Thanks for speaking up for us x

  7. Yesss!! I love the message behind this, you are so incredibly inspiring 🌼

  8. Great job, thank you

  9. Thank you so much for all the lovely comments, I'm really delighted and overwhelmed with the response to this!

  10. She talks so much sense.

  11. R.E.P.R.E.S.E.N.T.

  12. Our amazing Ambassador!! Keep up the great work Dr Pops! 🤩

  13. What a brilliant talk! Love this, will be sharing it around xxx

  14. Is there any possibility of this being captioned or a transcript available?

  15. The words you are saying are amazing and all but … that is also an excellent purple suit 👌💃

  16. So glad to see your rainbow NHS pin! I love the campaign 🙂

  17. What a roll model! So impressive – awesome talk.

  18. YASSSS QUEEEEN!!

  19. You are one of the most funny and jolly women I have ever met. Such a wonderful and wicked personality! This talk is incredible x

  20. When people ask me why I’m not “normal” I ask them to define normal… also why be “normal” id much rather be loud, different and for want of a better word weird because that is what makes me well me! I agree wholeheartedly about Brexit and it’s threat to the NHS and it’s vulnerable people who don’t always have a voice who will suffer.

  21. Thank you for sharing your story Hannah! In 2012 I was disabled by stroke. You've given me humor, hope, encouragement and inspiration. Once again thanks!

  22. Wow, I have Ehlers Danlos Syndrome, Hypermobility type and I turn 40 this month. I was diagnosed at 33 and was diagnosed with fibromyalgia at age 18. My body is literally falling apart. I don’t know how you manage. Well done, I know how amazing you are!! What you are doing is no small feat. I really hope you are able to bring about awareness for Connective Tissue Disorders, especially Ehlers Danlos Syndrome (EDS). I wish you were my GP. 💜🦓

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