Sickbabe explores the relationship between invisible disabilities and tackling the everyday. Topics include Covid-19, sexuality and relationships, being sick and Black and employment, among others.

The Sickbabe podcast is hosted by artist, activist, founder of Unmuted Brum and co-director of Colours Youth Network, Suriya Aisha, who spoke with Able Magazine editor, Tom Jamison.

For people who haven’t heard it, can you describe what the ‘Sickbabe’ podcast is all about?
Sickbabe is kind of funny and frank chats with people who live with invisible disabilities; mainly women and non-binary people who experience chronic illness and disability. I thought there was a bit of a gap within conversations about disability and about some of the awkward stuff that goes on in our lives that isn’t just centred specifically around medical intervention, going to the doctor, trying to save or fix ourselves, but about relationships, sex, family dynamicsand friendships. 

I identify as being disabled and live with a few different chronic, long-term illnesses which affect me. I’m an artist, an activist and an organiser so I create spaces for marginalised people and communities. All my work is kind of about creating spaces for unheard voices. All those nuances, I think really come through in the podcast.

Was there a moment where you thought, ‘Somebody’s got to start talking about this stuff’?
I made this podcast for those days, where you’re in bed and what I like to call ‘horizontal’ and you feel really isolated and disconnected from the world. When I went online and tried to look up disability experiences, I didn’t feel like there was anything that was there for me. I really wanted the podcast to almost feel like you’ve got two friends sitting together chatting about stuff. 

I think sometimes, from maybe the able-bodied community there’s a focus on either overcoming your disability or focusing on the binary of getting well or being sick. For a lot of people who live with long term illnesses you’re in between that space all the time; there’s no get well soon. Where are the conversations that are just about what it’s like in our everyday life and what we are dealing with; the silly things, awkward things and kind of humanising our experiences, so we weren’t just either an inspiration, or a story of pity? We’re just everyday people who want to have their voices heard.

Do you think there’s something about a podcast, that means that on those horizontal days, you’re not comparing yourself with a ‘perfect looking’ TV presenter?
I really hear that. I think a lot of chronically ill and disabled people feel that pressure about what a perfect disabled person looks like.  

Sometimes with mainstream programmes, we know that they come from someone’s editing angle, about how they tell the story of a person who’s disabled or living with an illness. This gives us an opportunity to own those stories. It really is about reducing that isolation.

At the same time, some people might say that some of this stuff is sort of dark in a way or negative…
Actually, the most common message we’re getting at the moment is, I’m really glad that someone’s finally talking about this, because I’ve felt shame that I feel this way about my experiences, and I felt like I had to be that super positive person – or I felt like I was almost doing disability wrong! The messages that we’ve received are like, wow, it’s such a relief to know that I’m not the only one who’s like that. To be honest, I don’t want to be a warrior today, I just want to be feeling a bit crap about it; almost like validating that all experiences are OK. Of course, we don’t want someone to be feeling down and negative all the time but it’s the nuances of experiences; we don’t as disabled people, have to make ourselves into these homogenous, peppy, super happy people, because it’s tiring, and you are going to get angry dealing with all the challenges that we face. I think it’s important that we give rise to both sides.

Is there anywhere you won’t go with the podcast? Have you found any of the subject matter difficult or uncovered any of your own inhibitions?
As an artist, I’ve written things that are close to my heart or are influenced by my own experiences. I would say that it has been the most emotional process for me because we haven’t found anything similar to this elsewhere. We decided not to particularly focus on the medicalisation of our experiences. For some people that I interviewed, I didn’t necessarily know what they were living with, I trusted their experience and that they identified as disabled and having a chronic illness. 

It came back to that ownership and of who’s owning our story. Lots of people have had their stories owned by doctors or Google searches, and it didn’t really fully encompass what we were talking about. 

You mentioned that it’s an emotional process; do you find it cathartic?
Listening back, I definitely feel it was cathartic. Because of the pandemic and having to record over Zoom and away from other people, at times it felt a bit like when you have a vulnerability hangover; as if you’ve had this really quite vulnerable conversation with someone where you don’t have that kind of after bit where you can walk to the station together, or you’re having a coffee. 

Is the theme of the episode determined by the guest?
We selected the guests based on particular experiences that we wanted to touch upon. So, we’ve got Imogen Fox who talks a lot about body neutrality and body positivity and that intersection of the challenges of the diet industry and disability, for instance. With Toni-Dee Paul I wanted to talk particularly about the commodification of time and how that affects our experiences. I intentionally selected the guests to reflect a wide range of experiences. Hopefully, people will be able to listen to this series and think, oh, there’s at least one episode that really resonates with me. We’re hoping that if we do a second series that we could continue to expand the topics that we touch upon.

Who’s your dream guest? 
Someone I really admire is Leah Lakshmi Piepzna-Samarasinha, her book, ‘Dreaming Disability Justice’ is a really great book. It’s about LGBT people of colours’ experiences of disability, but also forward thinking about disability, so I think talking to them, I really admire their work and I would love to speak with them. 

More:
Find the Sickbabe podcast on all podcast platforms, or follow them on Instagram, Twitter and Facebook: @sickbabepod.