Dylan McBurney has always been an activist – they have proudly backed their beliefs, spoken out on behalf of a good cause, and learnt more about the world around them as they go.

Dylan has previously taken part in a youth leadership program with Geelong City Council, participated in Education State Student Advisory Group, and advocated for the rights of others when they’ve recognised a need.

The Melbourne Stage Manager has now brought their wisdom and passion to the Feros Care Co-Design focus groups to contribute to the vision of a more inclusive society for people living with disability.

Dylan, who was diagnosed with fibromyalgia earlier this year, identifies as an LGBTQIA+ person and goes by the pronouns they/them – Dylan knows the significance of asking people about their own specific needs and wants, rather than assuming or just doing what is believed to be needed for them.

They took part in the a Feros Care Co-design focus group in May this year because they believe that if the principles of inclusion are to be applied to everyone in the country, ”then you need input from every type of person, and you need to see it from every angle.”

Pain and future gains

Dylan received a fibromyalgia diagnosis earlier this year after struggling with chronic pain for years.

“Getting the diagnosis was good and bad – fibromyalgia is incurable which obviously isn’t the outcome that you want but now that I’ve put the name to the symptoms, I can work towards having some effective coping strategies.”

They have embarked on a new learning curve of self-understanding and working out how they’ll manage their ongoing pain and work with their diagnosis.

Dylan didn’t realise that a significant part of their journey would be learning to “give myself some accommodations” and overcoming “internal shame” when they require time out or just time to do what is needed to be able to continue with the day.

“The things with fibromyalgia is that your brain interprets different signals as pain.

“So, if I get hungry, my body can understand that as pain. Giving myself permission to step out of work and eat – just doing something as simple as that – is very strange as I’ve noticed how hard it is to give yourself permission even when it doesn’t impact anyone else.

“It’s the internal shame, and I think that when you’re growing up, you see how other people act and you think, ‘Okay, I should act in that way too.

“You can have this mindset that you’re doing something wrong if you’re not acting the same as everyone else.

“I realised that I’ve been working twice as hard to keep up with everybody else when I should be working half as hard, because that’s how my body is built.”

Dylan says that work as a stage manager is often very physical, which can make it difficult to slow down, but even the medical advice is for them to do so.

“Every doctor is saying to me, ‘Just chill out.’ And that’s the last thing I want to do.”

The pain doesn’t present as a physical disability or look as if they have a mobility issue, however, by the end of the day Dylan’s back or neck pain can be debilitating and they are not as physically capable as other co-workers.

Inviting everyone to the party…

When it comes to the concept of co-design and inclusivity for the LGBTQIA+ and other often marginalised communities, Dylan says it’s crucial to invite people from all sectors of society to take part in discussions about all aspects of their lives including employment, social options, community access, culture and sporting activities.

“If you want to be accommodating to LGBTQIA+ people, bring them into the room and ask them what they think. It’s really simple.”

Dylan is very aware of how language can be misleading or misrepresentative, especially in the LGBTQIA+ space.

“In my job, and as an LGBTQIA+ person, I see a lot of casting calls and you can tell immediately when they’re not written by a gender diverse person.

“For example, in job applications or when you’re referring to cast members it says the women’s leads and men’s leads or men’s chorus and women’s chorus.

“As soon as you see language, it’s easy to tell that a trans person didn’t help write it.

“I don’t think ‘how dare they’ or hold it against anyone as there’s so much to learn. I can spot it but if you’re not aware of all of the language that is evolving so fast, it’s so hard to keep up.”

One of the benefits of the Feros Care focus groups was to be able to highlight the barriers that exist when it comes to language for LGBTQIA+ people so it can be included in the guiding principles and help motivate future change.

The power and the passion

Dylan says it’s very common to see people living with a disability, and think, “What can we do for these people?”

But, by embracing a new mindset, they have faith that a new paradigm where able-bodied people work alongside people living with disabilities can be created, along with more inclusive and accessible communities.

“We live in a world that’s built for able-bodied and neurotypical people but I’d like to think that we can work alongside each other. Rather than thinking, ‘It’s okay, we’ve got it, we can do this for you.

“We can bring everybody in and work alongside each other.”

Inspiring change, Dylan says, is not just about acknowledging and utilising the wisdom of people with lived experience, it’s about bringing in their passion as well because they know how much they want to make the necessary changes happen and make the world a better place.

“It’s about not pitying disabled people and seeing them as a group in need but seeing them as co-collaborators and intellectuals – as people who you can work with and you can benefit from and they can benefit from you.”

The most stubborn barrier to break down, Dylan says, is stigma.

“There are so many people who get this idea when they grow up of who people are and what you’re meant to be like.

“It’s very shaped by media. There’s the stereotype of the gay man who is sassy and overtly sexual and the stereotype of trans people – which is big in the media – of being people who enjoy dressing in the other people’s clothes.

“And then you meet them and they’re nothing like what you expect.”

As an example Dylan says that, when a homophobic person actually gets to know someone who is gay, they can release that they are a person who they have plenty in common with – not just a stereotype.

Stigma can lead to the ‘othering’ of people with a disability, which Dylan says that he also didn’t believe he could be disabled when he received his diagnosis.

“I thought, ‘Oh no, that couldn’t be me.' It’s about letting people know that they’re allowed to be disabled.

“The more people call themselves disabled the better. It can be a very empowering thing and the more people who choose to use that label, the more the stigma is broken down.”

Dylan says common disabilities can include people who wear glasses, and people with allergies and asthma.

“The stigma is a really big road block and the way to overcome it is to get out there and be loud. The more people you meet, the more you can humanise people who are very ‘othered’.”

At Feros Care, we are privileged to hear the voices of powerful individuals such as Dylan, and we welcome many other thoughts and views. We are always looking for more individuals to join our focus groups in our Local Area Coordination office locations. To find out more, click here.