The world may feel like a difficult place at the moment, but there are always people out there making good change. I’ve been interviewing some of these people to find out more about their activism journeys and how we can learn from them to make a positive impact on the world.
In this article I am interviewing one of my absolutely favourite disability activists: Shona Louise. Shona has been writing on her blog for years and she has used this platform to advocate for disabled rights. She has also spoken out on disability rights, accessibility and ableism on many platforms online, in print, via the radio and on TV. She has written for and worked on projects with Scope, The Guardian, Metro, Channel 4 and Channel 5 news and more. Shona is also a published author of an essay in Rife: 21 Stories from Britain’s Youth, talking about what it’s like growing up with a long term condition and being a young disabled adult. In this interview Shona talks about what it’s like to be a disability activist and how you can help amplify disabled voices:
What made you want to be an activist?
I think my activism came about simply because I was a disabled person trying to live the best life I could. When you’re disabled you almost don’t have a choice but to become an activist or have activism play a part in your life because despite the law saying we should be equal, we aren’t. If I wanted to live the same life as my peers, activism was the only way to make that happen. I wanted to change things for myself but also for the next generations. I didn’t want young disabled people growing up in an inaccessible world that values them less. Unfortunately disabled people’s rights and access to the world has only ever improved when we asked for more, when we’ve protested for more, pushing many disabled people to become activists.
How have you used your writing in activism?
For me, most of my activism is through writing. Since I was a child at school I’ve always been aware of how powerful writing could be and when I started sharing my experiences on my blog I saw that first hand. The fact that I can educate hundreds, and even thousands, of people through just one tweet is an incredible thing. Writing and social media allows me to reach a whole group of people that I would struggle otherwise to reach, it allows me to engage others in a way that doesn’t scream ‘activism’. When I’ve talked about issues like the plastic straw debate, access on public transport and in theatres I lose count of the replies and messages I receive from people saying ‘I had no idea this was happening’ and for me that’s the power of writing in activism, it is easier than ever before to inform people.
What has your activist journey been like?
It’s been a bumpy one! There have been so many ups and downs, it can be really tough being a disabled activist because the things you are campaigning on have such a direct impact on your life. The people campaigning against the disability benefit system in the UK are the same people that are affected by that system, being left in poverty and even dying as a result, and that can take a toll on you. It’s demoralising when you don’t see any change and quite often I’ll think ‘What’s the point? No one cares?’ but then the next day you’ll receive a message or have a conversation that gives you hope again. It’s a cycle of hope and disappointment but I would never stop. I definitely need to get better at stepping back and taking self care days — but my activism has gotten shops to install ramps, it’s opened people’s eyes about disabled people’s need for plastic straws, and it’s revealed ongoing issues of inaccessibility in the theatre industry that many of it’s employees weren’t even aware of. It’s those real world changes and gains that keep me going.
Why is it so important for able-bodied people to understand ableism and be a good ally?
I’m not a fan of this argument, despite it being true, but at the end of the day disabled people are the largest minority in the world and also a minority you can join at any time. Not only that but if we live well into old age then at some point you’re going to need some kind of help and support to live your life, and it will have been disabled people that campaigned for that support. If you’re not disabled yourself then you probably know someone disabled, and if you think you don’t then I guarantee you actually do, there are an endless list of invisible conditions out there. Disability rights and accessibility are good for everyone as well, at the end of the day if someone builds a ramp to access a building that ramp gives everyone access, not just disabled people. There are so many things in your everyday life that are helpful for disabled people, but also give access to everyone. Disability rights are human rights. Being an ally is vital as well because disabled people aren’t given a platform in traditional media, and when we do it’s to tell our ‘very sad stories’, so we need allies to help pass us the microphone. Don’t speak for us, but make room for us.
What would you like able-bodied readers to know?
I would like them to know that when I share my stories of negative access experiences or barriers I’m facing I’m not doing so to gain your pity or to share how awful my life is. I’m simply trying to demonstrate how difficult it can be to navigate this world when you’re disabled — and I’m showing you so you can help me change it. Disabled people don’t need your pity, we just need your support to change the world. Don’t think that this isn’t your problem to solve just because you’re non-disabled, because you or a loved one could become disabled at any time and if they do you will begin to see exactly what disabled people have been trying to tell you about for years. Don’t wait until that moment to care, start caring now.
Why is it so important for disabled voices to be heard?
Disabled people are the largest minority in the world, as such there are a lot of intersections which means disability rights weaves within all minorities. It impacts LGBT+ rights, black rights, women’s rights, it has an impact on everything because we are present in all those minorities. We have an attitude of assuming we know what disabled people need though, assuming that non-disabled people know best, and that’s how we end up with an inaccessible society. No one knows disabled people and disability rights as well as disabled people themselves, and if we were given a seat at the table then problems with accessibility and rights could be solved before they ever saw the light of day. For example, when a theatre renovates there is often opportunity to improve accessibility, but disabled people are barely present in the theatre industry in positions of power, or anywhere really, so these issues aren’t caught until the work has been done and it’s too late. Giving us a seat at the table would change that. Our voices must be respected.
If you could change the world in one way, what would you change?
I would make it so disabled people were simply listened to and our voices would be prioritised in conversations about us. The microphone wouldn’t just be handed to medical professionals, charities run by non-disabled people, or non-disabled parents of disabled children, it would be handed to those with a lived experience.
Who or what inspires you?
Disabled activists of past and present really inspire me in what I do. Stella Young coined the term ‘inspiration porn’ and gave disabled people the language we needed to call out representations of us across the media, and I really recommend everyone watch her TED talk about it! Frances Ryan is a disabled journalist in the UK who wrote an incredible book called ‘Crippled’ about how austerity in the UK has affected disabled people, building on her ongoing investigations into how disabled people have been affected by the UKs benefits system. And then I follow an endless amount of disabled activists across social media including people like Keah Brown, Alice Wong, Haben Girma, Annie Segarra and Jessica Kellgren-Fozard. The resilience of the disability community inspires me too, we are knocked down again and again but we somehow always find the energy to get back up again, and we support each other in that process.
How can people support your work?
Giving me on a follow over on Twitter and Instagram, @shonalouiseblog, and sharing my writing helps massively! Whether it be a blog post or a piece of freelance writing it really helps to support what I do. I’m also a theatre, events and portrait photographer, so check out my work at www.shonalouisephotography.co.uk . I think generally supporting activists is about passing the microphone and lifting up different voices, so I really recommend you strive to do that in your everyday life and across your social media platforms.
Do you know of any inspiring activists you’d like to see interviewed? I’d love to see your suggestions, comment down below!
The Header Image of Shona was taken by: http://www.fordtography.co.uk/