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28th July, 2022

Q&A with Dr. Hannah Barham-Brown

We sat down to chat with a self-described ‘roll model’ – a physician who has made it her mission to change perceptions about mobility.

Dr. Hannah Barham-Brown is a busy person.

The fact that she’s hurried back from her allotment (a rare moment of calm) to do this interview is testament. A part-time doctor, and passionate campaigner, the conversation fizzes with intelligent, wry observations about disability in the UK. It’s easy to see how she belongs on the Shaw Trust Power List as one of the UK’s most influential disabled people.

Hannah is an outspoken campaigner for diversity and inclusion. She’s delivered two (count ’em) TED talks on what it means to be a disabled person, coining the phrase #RollModel. She advocates going beyond normalising our differences — suggesting it’s time we celebrate them.

Hannah travels around the country, which is made easier with her powerchair, giving voice to a range of charities and causes.

It’s been a life-enhancing tool, but Hannah’s keen to stress it’s one that doesn’t define her: “I’m really lucky to live a full and quite exciting and slightly bonkers life. My chair enables me to do that. But that’s where it ends. It’s not who I am.”

Preconceptions can often be the biggest barrier to accessing a mobility product. But it’s useful to see them as tools, ones that can help you live everyday life with superb ease:

“It enables you to be independent,” she says. “I couldn’t do pretty much anything I do without my chair.”

TGA: Can you tell our readers a little bit about your journey to becoming a ‘roll model’?

When I was at medical school, I decided to run a half marathon for the British Heart Foundation, as my brother had recently died of sepsis following a heart transplant nine years previous. During training, I discovered that my kneecap likes to disappear behind my right leg. I’m an incredibly stubborn person. So I ran the half marathon anyway and just kept popping things back in.

I was that medical student that diagnosed myself with something weird and wonderful. And I actually got it right, which never happens.

I have Ehlers-Danlos Syndrome, which is basically a collagen disorder. It means that all of the joints in my body are very lax, because the tendons are made up of collagen. It’s a systemic condition that pops up in women in particular.

It became obvious that I wasn’t going to be able to qualify and keep up with everything without a wheelchair. I ended up crowdfunding my first wheelchair, with the help of my classmates.

I didn’t know any other doctors in wheelchairs. I didn’t know any other health professionals with visible disabilities. And I thought maybe I was the only one — which is a terrifying way to start your medical career.

I did everything I could to make myself and my disability more visible through campaigning. I ended up working with the British Medical Association to increase access to training for disabled doctors and medical students.

And now, I seem to get a lot of messages from other disabled people who want to be medical students saying ‘right, how did you do this? How can I do this?’

 

TGA: Do you remember the moment when you first knew you needed a mobility tool?

My first wheelchair had light-up front wheels because I wanted it to be an extension of my personality and represent who I was.

My mum’s a wheelchair user and has been for many years, so I grew up around disability, understanding what mobility aids were. And it didn’t faze me so much when I realised that if I wanted to have the career I’d worked for, I needed to try using a mobility aid.

So I think the transition was a lot easier for me in many ways. It came at a very challenging time when I was trying to finish a medical degree, which was tough, but in a way, it meant I didn’t have time to consider the impact on my identity.

TGA: You mention the strength that having a disabled mother’s example has given you – how did she help you in getting and using the right mobility device?

When I was growing up, mum used [walking] sticks, and then wheelchairs, but always had one of these awful massive 25-kilo wheelchairs from the NHS, that my dad would have to get in and out of the car, he’d have to push around, and she had no independence in the chair at all.

She’s an incredibly well-educated, articulate woman who trained as a lawyer and has done all this amazing stuff. But, until I crowdfunded my first manual chair, she didn’t realise that chairs like that were available to her; that wheelchair services would reassess her — that she had so many options.

She helped me adjust to becoming disabled, but I helped her explore the world of disability in a whole new way and learn what was available to her.

 

TGA: In the case where the prospective user and their relatives disagree over how and when to decide to use a mobility product, what can help bridge the gulf?

It’s a really tricky conversation. You don’t want to say: ‘right, you should now get this, you are now disabled enough to need this.’ Frame it in the way of giving them the option: ‘I don’t know whether you’re aware, but have you seen X is available? I was thinking I’d really like it if we could go on this holiday. Did you know that we could maybe borrow this so you could come with us and be a part of it?’

Just giving them information can be powerful without being pressurising, because it is an incredibly challenging journey. It means people know they’re not alone in making these decisions, and it can feel like a very lonely thing to have to consider.

 

TGA: What myths/misconceptions surround who uses scooters and when to use them?

I think there’s this assumption that you get to a certain age, and then it’s like, ‘oh, let’s get granny a mobility scooter. So she can join in.’ And it’s so inaccurate.

Actually, they can empower people of any age with disabilities to get out and have a full quality of life and enjoyment.

There are lots of assumptions around what you can and can’t do with them. But there’s so many models on the market now, ones that you can take in the car or take around National Trust properties and get muddy.

I guess the other misconception is that they’re really hard to drive. I have no spatial awareness. I have EDS, ADHD, and probably dyspraxia, and I’m very easily distracted. And I always think I’m going to roll over someone’s toes. And I rarely do.

TGA: Is there ever a wrong time or a right time to buy a mobility product?

There’s no right time for everybody. It’s very much a personal decision.

I think it’s really sad when people have put it off for years and years. I don’t want anyone to look back and say ‘God, I wish I’d done this a decade ago. I wish I’d sucked it up and tried a wheelchair because actually, it empowers you. I don’t consider myself to be a wheelchair user first and foremost, I’m many other things before that. But it enables me to be all of those things. And I never want to look back and think I wish I’d tried that because I would have been able to do so much more.

“There’s no right time for everybody. It’s very much a personal decision.”

 

TGA: How can people overcome the psychological barriers associated with using mobility products?

The first thing would be borrowing, hiring, renting, having a go on them. You’re not signing yourself up for life, you’re not getting a big wheelchair sign stamped on your forehead. And second is looking at the amazing work that so many disabled influencers are doing.

That’s something I think a lot of our non-disabled allies are really starting to cotton on to: platforming the disabled community.

Sharing the incredible work that so many people are doing with mobility aids, of all shapes and sizes, is really helping break down some of those psychological barriers.

 

TGA: Do you have any examples of ‘roll models’ who are owning it?

I’ve got an amazing social media friend, Lucy Dawson, who’s a glamour model with the most amazing walking sticks, and a leg brace. And she’s incredible, she’s taking on the world.

Kate Stanforth is also amazing. She’s a dance teacher in a wheelchair. And Ruth Madeley is just a queen. The Triple Cripples. They’re two young black women who talk about the fact that they’re black, female and disabled, and how society views them as a result of intersectional living, and they have an amazing podcast.

 

TGA: For those that have made the decision and might be new to the idea, what tips could you give them to help them in the next stage?

Don’t just grab the first one. Try a decent range of different chairs and options for you. And think about how you’re going to travel in it. I go to London and around the country all the time with my power chair.

I know that with my WHILL, I can get my overnight bag underneath my feet. And I can hang a rucksack on the back.

Think about how you’re going to transport not only yourself but your belongings. Be ambitious with it. You know, if I want to take my powerchair to a park, I can. But I wouldn’t necessarily have thought about that when I was buying it. What are the craziest things that you think of? Wouldn’t it be great if I could do this in my chair?

And think about those things when you’re buying even if it seems completely unlikely at this stage of your life, because a lot of us come to chairs at challenging times of our lives when it feels like everything’s kind of shutting down around us.

Try and think outside the box on it. And think about how you make it your own.

My first chair had front wheels that light up in four different colour, cause I wanted to take it clubbing. I chose red sides for my Whill powerchair because I wear a lot of red and it goes with my crazy ginger hair.

It means that non-disabled people often comment on that aspect of my chair, rather than the fact that I’m in the chair in the first place. Because people are really awkward around wheelchair users, right? They freak out, they don’t know what to say to us, they don’t wanna make eye contact.

Sometimes it’s really awkward for everybody involved. But if they can go, ‘Oh my god, your front wheels light up.’ That’s a really nice, gentle opening to a conversation. It just changes the whole nuance of that discussion. And it means that we can kind of acknowledge the very sizable elephant that I’m sitting on and then move on.

“My first chair had front wheels that light up in four different colours – ‘cause I wanted to take it clubbing.”

 

TGA: Given your background as an outspoken advocate for inclusion and diversity, how far do you think we’ve come in 2022.

It’s a really interesting time to be disabled at the moment. Because in many ways, we’ve made a lot of progress. We’re seeing more disability being talked about. And social media is really valuable space in the disabled community, in particular, to socialise and get to know each other and share ideas. All of that is fantastic.

But you’ve got that juxtaposed against this situation where disabled people, disabled women in particular, were far more likely to die of COVID.

And many people are still scared to leave their homes. As a society, we seem to have forgotten a lot about disabled people, and the fact there’s this whole community that are scared to leave their houses, who have been through unimaginable things in the last two years.

That seems to have been forgotten, in our desperate urge to get back to normal
life.

It’s a really strange time because you’ve got two separate dialogues going on at once. So yes, disability rights are flourishing. And our options are bigger than they’ve ever been. And we’re starting to get more representation in so many sectors.

But then at the same time, we’re seeing more and more people being left behind, because our society is trying to move on and forget they exist.

We need to make sure we’re bringing those people along with us and that we’re supporting them and that we’re advocating for them. Because otherwise they will get left out of the conversation.

And that’s simply not acceptable in 2022.

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