The Road to Byron – episode transcript

Alex:

Hi everyone, and thanks for listening to Visibility, the monthly podcast produced by CID, the Council for Intellectual Disability. Here, we will be telling our stories and exploring some of the issues that impact people with intellectual disability. To find out more about our work, visit www.cid.org.au Now, settle in and enjoy.

We acknowledge the traditional owners of the land where we work and pay our respects to elders past and present. We believe this always was and always will be Aboriginal land.

 

Raylene:

Hello and welcome to our listeners and to today’s guest Byron Boehm. Byron is a 37 year old artist living independently in Sydney.

For most of Byron’s life, he is known that he is gay. But it is only in the last year that he has come out publicly. It’s not just his sexuality that Byron has struggled with in his life. He also has a serious physical condition that causes him ongoing pain and distress. Not only that, a childhood accident left him with damage to his brain and he also has ADHD.

But Byron will not allow himself to be a victim of his challenges. Through his art and with therapy, he’s fighting to make a better life for himself and to become a beacon of light, strength and hope for others. He also has a very unique business idea that he will share with us. My name is Raylene and I’ll be your host today.

With me is my co host Lauren. Welcome Byron.

 

Lauren:

Thanks for joining us today.

 

Raylene:

Byron, what does it mean to come out?

 

Byron:

What does it mean to– Excitement. Happiness. Means me living my life. Forever, like, I want to live it, finding a partner, being the real me, being the positive, happy me. Connection, like a connection, a connection.

 

Lauren:

That’s beautiful, Byron. Um, how long have you known or felt you were gay?

 

Byron:

I’ve always just sort of known, well, known but not known. *laughs* You know, there’s been times when I’ve watched movies in the past, for instance, when I’ve been with friends and there’s like female sex scenes and they’re all very interested and I’ve always never been. Never been interested. It’s a bit hard because I pretty much set myself up until I was, till I came out of a life of living, no, not living a lie, but living…

 

Raylene:

You weren’t authentic at all times.

 

Byron:

Yes, I grew up in the country as a fisherman. So it was sort of like I was as far away as possible from anything remotely gay, if that makes sense?

 

Lauren:

Yeah.

 

Raylene:

Well, Byron, tell us about your early life. Where did you grow up?

 

Byron:

I grew up in the Snowy Mountains. In Perisher Valley, in a ski resort. My mum and dad, Gil and Yui, I have a brother who’s five years older than me. We had 80 beds and 120 seat restaurant.

 

Lauren:

Wow.

 

Byron:

In the winter, we lived in the Snowy Mountains. I would fish in the summertime and ski during the winter, which is a pretty good…

 

Lauren:

That’s a pretty ideal childhood.

 

Byron:

It’s a pretty good life.

 

Lauren:

So were you pretty much born skiing then?

Byron:

I was born skiing. I didn’t love the skiing, but I loved the fun of it.

 

Raylene:

Tell us about your skiing accident.

 

Byron:

When I was seven, I was skiing with a friend of mine, went off a ski jump and landed on my arm, broke my arm.

I, I got taken home. My dad was there. I just about to have a tea. It was like I had a sip of tea and it was like a bomb went off in my head. I had the most terrible headache you could ever possibly think. Anyway, I ended up in Canberra hospital with a stroke. Probably one of the first seven year olds to be admitted to Canberra Hospital with a stroke.

It gave me a weakness in my left hand, which I have now. So it’s been a lot of years of physio, OT, and didn’t affect my speech so much. But I also, on top of the thing of the stroke, I have Ehlers Danlos.

 

Lauren:

Can you explain Ehlers Danlos to us?

 

Byron:

Collagen is the glue that holds your body and I can’t reproduce it.

Everybody is born with collagen in their body. Someone with Ehlers Danlos is born with collagen but very, very less levels of it and they can’t reproduce it. So all of my joints are loose and dislocate and bend and hyperextend beyond what they’re, what they’re meant to.

 

Lauren:

It sounds like it would be very painful.

 

Byron:

Yes, it’s caused a lot of hospital visits, ambulance visits, a lot of pain, a lot of, uh, swelling and lots of operations on my knees. We go through periods where everything works but it’s sort of left me with a bit of arthritis now and chronic pain from it. But, but the mixture, I think, of the stroke and that’s a pretty challenging thing.

 

Lauren:

You’ve had a lot.

 

Byron:

Look, and I’m trying now to make a life where I don’t make my disability me, but you have to be part of it.

 

Raylene:

It doesn’t define who you are, but it’s part of you.

 

Byron:

Yeah.

 

Raylene:

Would you say that’s right?

 

Byron:

That’s right, yeah.

 

Lauren:

So how did that affect, like, your school days?

 

Byron:

I had learning difficulties anyway when I was a child. I would do school during the summertime at Berridale and then homeschooling, and we managed to get myself up to year six.

Mum and Dad found a boarding school in the southern highlands, which was challenging enough for any 13-year-old to be sent to boarding school because it’s a, it’s a, you’ve lived with your family all of your life. It was very hard. I was terribly homesick. I’ve always been [with] my mum and dad. I love my mum and dad.

Anyway, I finished school in year 10. School was no purpose for me.

 

Raylene:

What was your ambition after you left school?

 

Byron:

I love fishing and I wanted to make it my job. So I got a job in a local fishing shop.

 

Lauren:

Oh nice.

 

Byron:

Taking kids on fishing tours. My purpose in life is to make people smile. I love it. Whether it be a six year old kid or a 90 year old from America, they may have fished or they may have not, but you take them into nature first and they would light up and they would be happier.

Then they would catch their own fish and they would smile with such beautiful…

Raylene:

Enthusiasm.

 

Byron:

Yes, and there’s not much we can get someone to smile like, like that. Anyway, after six years of doing that, I realized it’s best sometimes to let your passion be your passion, because I was working in it and then you wouldn’t enjoy the fishing as much.

So it was at that point, I sort of did a bit of labouring and up until five years ago, I was a horticulturist. Did it for four years.

 

Lauren:

Did you enjoy that, Byron?

 

Byron:

I enjoyed that. Yeah, it was outdoors. It was mowing the lawn. But after four years of that, my, my health got a little bit less. So I started to do art and noticed that I could get the same smiles from my artwork that I used to get when I took people fishing.

 

Raylene:

You’re in discussion with a fashion company about an art collaboration. How did that come about?

 

Byron:

Well, I always loved my art and wanted to make it a bit of my job if I can. And I’ve always liked the idea in my life of swapping things for things, trading for things. I would swap smoked trout for meat at the butcher and clothes even at one point.

Three or four months ago, I was looking on Instagram and came across a company that does adaptive fashion, which is what I sort of use. I sent them an email seeing if they wanted to swap some artwork for some clothing. Well, in fact, it turns out that this company had a plan since COVID to do some sort of a collaboration with artists.

They said they’ll give me clothing, but they also want to set me up with a business and do a collaboration where I’m going to get my artwork on some of their clothing and set up with a business, because I want to spread my art around Australia and around the world if I can eventually. I’ve put my art on clothing a little bit myself, on leggings and things, and it’s so awesome to be able to wear your art.

But then it’s next level to be able to have other people wearing your art. So that’s all being planned at the moment, but it’s very big things to happen for, for Byron.

 

Raylene:

You also have another very interesting business concept, cuddling.

 

Byron:

I’ve always loved hugs and kisses and human touch. About six months ago, I was, I was getting lost in the corridors of a hospital. *laughs*

Um, and I, I came across just, I heard a lady crying. in, in the hallway and I just went up, I said to the lady, Oh, I don’t know you, but would you like a hug? And she put, she said, yes. And she put her head on my shoulder, her arms around me and just sobbed for about 10 minutes.

Afterwards, a nurse just came and lit up with a smile and said, thank you for that. That’s amazing. She just lost her, I think her, her husband. And anyway, it was like, I felt pure magic when I was giving that hug because I just had some appointments that made me pretty down. And I got home and sort of Googled, is there a job for huggers or cuddlers? And it actually is a job. It’s quite a common thing.

People in hospitals in Italy, not so much in Australia that are employed as cuddlers just to cuddle with newborn babies if they’re, you know, orphaned or something. And then I Googled, is there some sort of cuddling business or comfort business? And I found that there was an Australian company. And I did training, how you’d set up a cuddling business.

Lauren:

Do you feel like it comes quite naturally to you and you’re quite intuitive?

 

Byron:

Yes, very much so, yeah. I was like, well, I need to make it my job. And so I started it.

 

Lauren:

What have you called your cuddling business?

 

Byron:

Three C’s. Cuddle, cuppa, chat.

 

Lauren:

Cuddle, cuppa…?

 

Byron:

Chat.

 

Lauren:

And chat.

 

Byron:

And that’s basically what it is. And I had my first client. And… it was really quite odd actually to have some, a stranger come to your house and then for you to just hug them. But it felt at home and I just felt at purpose with, with it.

The person came, it was like a 32 year old uni student from Taiwan.

 

Lauren:

Oh wow.

 

Byron:

He’s been here for two years, doesn’t have family, doesn’t have friends and just wants a hug. Misses his mom to hug! Anyway, within 10 minutes, he was asleep on me and fell asleep on my shoulder for an hour.

 

Lauren:

Oh wow! How long is the session? Is it an hour of cuddling?

Byron:

It’s about an hour, yeah.

 

Lauren:

And if they want to talk?

 

Byron:

They want to talk, they can, they can, it’s just, I’m there an ear. They might even just want to listen to music. They might want to stand up and do dancing hugs or lie down hugs.

For me, the payment is hugs because it’s not only me giving my warmth and cuddle to the person, but also from the cuddle from them, I’m receiving incredible things too, from feelings, to feeling their heartbeat, to so many different things.

 

Lauren:

What are you hoping, Byron, that the people who you’re hugging get out of it?

 

Byron:

I just want them to get what they don’t have. If it’s just a hug, if they’re missing family. I would love to be the person on Saturday that at the park, people can just go and have a, have a hug.

 

Raylene:

Thanks, Byron. We’ll now take a short break, and then hear more about Byron’s life.

Alex:

You’re listening to Visibility, the podcast produced by the Council for Intellectual Disability. We will begin this episode again shortly.

In the meantime, we wanted to tell you about all the great information and resources we have on our website for people with intellectual disability, their supporters, and the community.

You can find all sorts of helpful information at www.cid.org.au. And of course, you can find us on Facebook, Twitter, or Instagram. Now let’s get back to the episode.

 

Raylene:

Welcome back, everyone.

 

Lauren:

What encouraged you to come out, Byron?

 

Byron:

Sort of up until last year, really let my whole bloody life, really, focusing on my health, really.

 

Lauren:

Yeah.

 

Byron:

Hadn’t even really given much energy to relationships or anything. I’ve tried, I’ve had one partner in the past who was a girl, but it was more of a friendship, really.

I had to do some real soul searching from the bottom of my heart. Even before I came out, the thoughts had still been in my mind for the last few years of how do I tell people.

 

Lauren:

And how were you feeling about it? Were you nervous?

 

Byron:

I was, yes, I was very nervous. I actually came out to my support worker. We were having a lesson in the swimming pool for my condition and she noticed all of a sudden I started crying and she said, what’s wrong?

And then I said, well, I haven’t told anybody this and she said, well, what’s wrong? And I said, well, I’m actually, I’m gay. And that was, and I sobbed in the water for a bit. It was a good time to do it because I cried my heart out for half an hour and then went home and then I told my, my mum and dad, I didn’t have hesitation telling my mum or brother a little bit, my dad, a little bit.

Anyway, I did tell him and he absolutely was as fine as anything because people love you for you.

 

Raylene:

How did you come out publicly?

 

Byron:

When I do something I want to do something big and I was like well even people that don’t know me should know my story really, not the fact that I’m gay, but the story really.

So I just went and randomly put it on Facebook pages. Which is a pretty strange thing to do, you know, a general person to just say, well, I’m gay. This is my story.

 

Raylene:

What was the reaction from others?

 

Byron:

They were all incredibly beautiful, touching, touching thing. If I could help one other person, that’s my purpose.

And I got the most lovely message from someone on Facebook. And they said, do you mind if I ring you up? He said, I’m 44. He said, I’ve got so much admiration for you because I never did any of that. I’m living now with a wife. Not living the life that I want to live, it just, you’ve really made an impact.

 

Raylene:

What are you looking for in a partner?

 

Byron:

Funny, happy, someone to share, you know, the, the same things that I do. Animals, I have a dog, a dog person.

I feel like I’m 10 years old and in primary school learning the whole dating thing again, which is very exciting actually.

Lauren:

It’s a lot more nerve wracking, isn’t it?

 

Byron:

There is a company in Sydney called ACON. You heard of that?

 

Lauren:

Oh, yeah. ACON.

 

Byron:

And they run courses. And I was meant to do one a month ago called Mr. Right. Like how to find Mr. Right.

 

Lauren:

Is it dating advice?

 

Byron:

Yeah, dating advice. Next Tuesday, I’m starting a week long course. The word’s a bit rude, but it’s true. It’s All About Ass Class.

 

Lauren:

Oh, right.

 

Byron:

Just to learn for me all about safely sexual, you know.

 

Lauren:

Practices.

Byron:

Which is important because I need to know that.

 

Lauren:

Have you been able to sort of find your way into the community, um, and meet people?

 

Byron:

Well I’ve only really just started in the last month as far as meeting people.

 

Lauren:

Right.

 

Byron:

Just recently I’ve met two new support workers from a company which is, it’s like a support work company but for LGBTQ people.

They’ve been absolutely incredible.

 

Raylene:

How did you discover Project Home Unity?

 

Byron:

In the last few months, I’ve been doing more searching or, well, why don’t I search LGBTQ businesses and stuff? And I just found it on Instagram, and they are the most down to earth company that I’ve ever seen.

And, you know, for instance, in the last three weeks, I’ve been, once we went out to my first, I was about to say strip show, I don’t mean strip show, I mean the opposite, where you dress up, a drag show, and I absolutely loved it.

 

Lauren:

Mm hmm.

 

Byron:

But even just being there, I just felt at home with the people around me and they were nice. You could, they would say hello to you if you walked up to the bar and I just felt accepted and really that I want more of it. And it’s, yeah.

 

Lauren:

You found your tribe.

 

Byron:

I found my tribe. We’re still in the process of that, but yes, getting a lot closer to it. I’m going today with my support worker to an LGBT queer group for a barbecue somewhere.

They go every Friday night. But I’m still not keen enough to go to the pub on my own yet because I don’t really still know anybody there. But if anybody wants to join me, no joking.

 

Lauren:

Oh, we’d love to, Byron.

 

Byron:

Yeah.

 

Lauren:

What are you interested in?

 

Byron:

With my thing with Ehrlers Danlos, there’s times when I’m okay to do things and there’s times when I’m not.

I’m 37 now, so my partying days have gone.

 

Lauren:

Aww.

 

Byron:

There’s times when I’m really bad and I just need to stay at home. But they are good at knowing, well, Byron, you still need to go out, let’s go out and have a drink. But they still help me at home with my home things.

 

Raylene:

Are you positive about the future?

 

Byron:

I was going to say by the end of 2025. I want to have an art business, have a husband. No, I’m joking. No, I just want to build on what everything that I’ve got to start to live the life that I’ve always supposed that I’ve wanted to live, to start to live the proper Byron road.

 

Raylene:

Can sharing your story help others?

 

Byron:

Very much. That’s the reason. That’s one of the big reasons of why I like to tell people everything about. So that I can have an impact on them and properly help them. I want to be the person that stepped up, you know.

 

Raylene:

Thanks, Byron.

 

Byron:

My pleasure. I loved it.

 

Raylene:

And for everyone listening, thank you as well. Join us again soon when we will share more stories from people with intellectual disability about the decisions and choices they make in their lives.

 

Alex:

You can support our podcast by leaving a review on Apple. or your listening app of choice. And in the meantime, don’t forget to check out all of our great resources at www.cid.org.au. Until next time.