Disability Community Profiles: Erin

Tell us a little about yourself.

I live in St Kilda with partner Lee and two cats — Tribble and Boop. I'm an artist (written and performing arts) and I make podcasts (producing, directing, acting). I use a powered wheelchair - the 'space chair' cause it’s like a spaceship.

How do you identify?

I'm a queer, trans, bisexual, pansexual, disabled, fat, polyamorous artist and a ‘pretentious Melbourne hipster arts wanker’ who likes arts, brunch, and talking about pretentious things at the Art Centre. And I'm a leather-man/kinkster.

What are you passionate about?

EVERYTHING. I’m laid back, but in a passionate way. I care a lot about community involvement, which can look like a lot of things. It has looked different for me and my partner over the years, but humans are social animals and we actively need to interact with others in our society to be healthy as people. I think that’s important to nurture in yourself, as much as your diet. It’s one of the strengths of humanity, that we know how to cooperate and work together.

I'm passionate about accessibility and art. The older I get, the less I care if art (any kind) is good, or if I like it. What matters to me is if it’s interesting.

I'm passionate about volunteering. I used to do a lot of volunteering with VicLeather, event organising etc. Volunteering with podcasting! It doesn’t have to look like formal volunteering, which can have requirements that a lot of us can’t meet. But it’s important to find some ways to contribute to your communities, because giving back is good for YOU.

How do you spend your time?

I spend most of my day in bed! I spend around 6 hours a day on average on bed rest, so when I’m in my day bed and working on my podcasts from there, I do creative writing, research (some for work, sometimes just for the fun of it), audio editing, and production planning.

I socialise from bed via social media. I spend SO much time on Twitter (it’s a hellscape but so is all social media). Twitter is really good for community building, but it’s also one of the few platforms that isn’t focused on what you look like.

Lee and I go on dates a lot. The movies, the theatre when we can afford it. Live streaming isn’t the same. Now that I’ve got my chair, we go for walks a lot. We’ve been together for 10 years so we do most things together — spending too long deciding what we want for dinner, watching TV together, what you’d expect. It’s normal, it’s very boring. When you’re in a good relationship, it can be boring and that’s great.

Neither of us have been dating anyone else for a while, but when we do (we date individually not as a couple) we’re not the ‘don’t ask don’t tell’ poly type, we bring our dates home to meet each other and stuff.

Lee works on the podcast too. Making art with your partner is a really good thing.

The moments when I’m happiest is when Lee and I would go to our local pub for brunch. We’d talk about politics, and do some script editing, and watch dogs walking past — eating avocado toast in the sunshine. Every single time, I think about how happy I am and how grateful I am.

What does Pride mean to you?

Interesting question, because think trying to narrow it down, Pride is an understanding and acceptance of my own self worth. It's about recognising myself as a complete human and celebrating myself as a complete human. When you narrow down queer pride, disabled pride, etc., it all comes down to it being that I am a worthy, complete person and that’s worth celebrating.

What’s your favorite thing about yourself?

I have so many things I love about myself!

It’s contextual: if I'm thinking about it physically it’s different to my favourite thing about myself in a relationship.

I love my patience. I have almost endless patience which is a side effect of the disability I have. You learn to be patient when you have to wait days between being able to do things.

I love my curiosity, and I’m a very cerebral person. I like to spend a lot of time thinking about things, which is good

I don’t sweat the small stuff.

I have a very good mum voice. I can command attention without being threatening. I’ve worked very hard to be non-threatening.

I love my facial hair! I’m also very soft and huggable.

What do people find surprising about you?

That I can basically make a podcast from bed. I have a table from Aldi that I have on an angle, and my monitor strapped to that with some pillows I’ve bundled up under my arms.

Once people get to know me, a lot of folks are usually surprised to find out I’m a high school dropout. I have quite good social skills, which I worked very hard to develop because they never really kicked in.

What is one thing people can do to support LGBTIQA+ people with disabilities?

When it comes to able-bodied queer people, often when we discuss acceptance of disabled people in queer spaces we focus a lot on dating preferences and interrogating those (which is good, and we should do that). You don't need to want to f*ck someone to welcome them into the community. Whether you want to date or whether you want to be friends with them even, it doesn't matter — you still need to make space for us.

Also, for people to stop thinking of us as separate. I was thinking about this because of the way some people talk about COVID risk and there being an acceptable death count. And I was thinking “but what if it was *your* family member?” and there’s this issue with seeing us as separate, about this invisible sub-group that they never interact with.

I don’t think it’s that people are consciously thinking “disabled people suck”, I think it’s that they don’t think about us.

And what queer LGBTI people can do for each other, is to have some good faith and not eat each other alive.

The issue is that often we look at people and say “well I suffered, so you should have had to suffer too if you want to be here”, we hold up trauma as a condition of entry because it can be really hard to accept that if people aren’t suffering now, if they aren’t being put through as much as we had to live through, then our suffering didn’t have to happen. That can be a deeply painful thing to accept, it comes with a lot of grief, but it’s so important we do that work, and process that grief.

What’s something you’re proud of?

I am very proud of being alive because there have been times in my life when that was dicey. I have worked very hard to build a happy life, and I have successfully done that, which I am very happy about.

How do you stay connected?

There’s no single answer, and I think that’s important. I don’t think there can be a single avenue - social media, mailing lists about events, shopping at queer outlets. I do go to events if I can because having a geographic connection to your local community is important. Online communities are great and important, but I don’t think they should be the only connection we have.

Even smaller things, like reading queer books, can make you feel more connected. Community is just a group of people, so watching a show or a book can make you feel more connected to this wider group of people.

Oh and volunteering! Lee and I have been organising events and helping out with communities for over a decade. It used to be with the Vic Leather community and now it’s with the podcast community.

Volunteering is one of the best things to do to connect with people. More than that, it can be really helpful to have commitments that are made due to mutual investments. That can be your time, your labour, your energy — building something for your community (or with your community) can be really powerful, both for you and for other people.

Where do people start if they want to connect with some of the things you do?

Check out: https://www.facebook.com/groups/transability

Give us an example of how you practice self-advocacy.

I practice self-advocacy by asking for clarification a lot. If I don’t understand something, I will ask for clarification. If I think I understand, I will parrot it back to ensure it’s clear. Asking for things in emails, rather than phone calls so you have accountability.

The best inclusive support has always been down to individual people. There haven’t been many institutional inclusion support things that have been particularly successful. Usually it’s down to one or two people in charge who care.

A prime example of inclusive support, btw, is not asking for evidence!

I have a good self advocacy story. Getting a hysterectomy. I had a patient liaison, whose job it was to find out how patients were doing, what they wanted, what they were not okay with, what they understood about the procedure. She was really good, she could listen to me and make sure I fully understand what is happening, then translate my wants to the doctors in medical jargon. Having someone whose job it was to make sure I got what I wanted and knew what was happening was really good.