CHRONIC ILLNESS, DISABILITY, & DIGITAL LIFE

I was very honoured to host a podcast episode for the Digital Writer’s Festival recently: Chronic Illness, Disability, and Digital Life, with CB Mako, Gemma Mahadeo, and Katerina Bryant.

You can listen to the podcast or access a transcript here.

When, in an ableist society, one’s access and participation in IRL spaces may be limited and fraught, what possibilities can the virtual sphere provide? Join queercrip activist and artist Robin Eames, and writers Katerina Bryant, CB Mako and Gemma Mahadeo as they discuss their relationships with disability, chronic illness and creative practices in the virtual realm. A conversation about the politics of visibility/invisibility, the body, freedom and autonomy online. Produced by Thanh Hằng Phạm.

From the episode:

Robin M Eames:            What advice would you give to younger emerging disabled and chronically ill writers regarding digital spaces?

CB Mako:                      For me, it would be, if you’re an emerging writer like myself, constantly ask for space. I know it’s frustrating, exhausting, it’s a journey, it’s a long battle, but we have to do that, and we intercept and ask for those spaces. If in terms of technology, if you need a technology to have the space, if there are grants out there that would help us do the work that we need to do, I hope there is. There’s NDIS, but unfortunately, I don’t know how NDIS would work in our area, because it hasn’t rolled out yet. That’s called the National Disability Insurance Scheme, for those who are listening outside of Australia. So, it’s a long journey, and, to have this space with Digital Writers is a good step, it’s a beginning. I hope other producers, other programmers would give us the space as well.

Gemma Mahadeo:        I’d say to emerging writers that identify as disabled, to not be ashamed of stating what your access requirements are, and your voice is valuable. No one will have the perspective that you do. So, it’s going to be really hard, but have faith that you deserve to be heard, and producing the work that you’re producing. Don’t be ashamed about how little or how much you’re producing, because personally, I think health should come first before creativity. You will produce your best stuff when you feel good about yourself, and feel healthy. It took me a long time to learn that one. So, don’t be ashamed of having to step back also, from online spaces or real life spaces, if that’s going to be better for your health, because it might look difficult to other people, but you’re not being difficult looking after yourself.

Katerina Bryant:           For me, I would say, take the time to find what works for you. Don’t rush in creating your work, like you said Gemma. Be generous to yourself, and know that there are communities out there for you, even if you feel as though your situation or your illness or experience of disability is complex, or a little different. There are people out there for you, and there’s art out there for you to both experience and to make.

Robin M Eames:            I suppose my own advice would echo probably all of that, but also, just try not to be discouraged when people are awful, because people can be awful. A lot of the time, it’s not even because they’re being malicious. It’s just because they don’t understand. A lot of the time, it can feel like all we should need to have our needs met, is to be able to be heard, but sometimes you need people to be willing to listen. It’s not your fault if they don’t, it’s not your fault if space is inaccessible for you.

Robin M Eames:            If you can’t access a space, it’s not on you. It is not a reflection on you. It’s all right if your needs are different to other peoples, and it’s up to society to create spaces that everyone can use, and interact with each other. It’s not your responsibility. But at the same time, it can be so powerful to reach out to other people, like both people who don’t experience the things that you’re experiencing, and the people who do, because we can’t understand each other until we’re talking to each other, and listening to each other.

Robin M Eames:            It’s important as well, not just to talk, but to listen and try to keep in mind that everyone, everyone has different needs. We’d be better off I think, if we could approach interaction in the hope that everyone can get their needs met as much as possible.

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