I met Luke for the first time when my family went to support Rebecca in her first electric wheelchair national sport competition. Luke is from Melbourne and he was the second person I’d meet who has Nemaline Myopathy like me because we are so rare. When Luke isn’t playing electric wheelchair sport, he’s advocating for others through both volunteering and paid employment.
Tell me a little bit about yourself
Hey! I’m Luke, I’m 27 years old and I live in Melbourne, Australia. I am an absolute sport and eSport enthusiast. I’ve always said that in another life I’d be playing AFL for Geelong, but you know what? I wouldn’t change my life at all. Sports and gaming are my two biggest passions in life, and I think those two things play a big part in who I am today! I’m an avid Halo gamer and play as many sports as I can!
Over the past few years, I’ve been more involved with disability advocacy. Through work and volunteering, I have been doing my best to advocate for disability rights. I go to a lot of schools and community organisations around Victoria educating young people about the NDIS, goal setting and self-advocacy.
Today, I’m currently working at Support Your Way, a disability support agency. I’m also the President of Powerchair Sports Victoria.
As I said in the introduction, you have Nemaline Myopathy like myself. For those who aren’t familiar, what is Nemaline Myopathy? It also affects everyone differently, so how does it affect you?
Nemaline Myopathy has weakened most of the muscles in my body, particularly in my limbs, spine and neck. I have quite severe scoliosis which basically means I have a really twisty back. I was quite sick when I was younger as my family didn’t really know anything about neuromuscular disorders and how dangerous the common flu could be. At 3 years old, I had a bad case of pneumonia which caused one of my lungs to collapse which is why I started to use a BiPap to help me breathe and now I use that 24/7. I use a powerchair for daily mobility but am lucky enough to be able to stand for a few seconds which allows me to do quick self-transfers. At the moment, I feel like I’m pretty stable. I don’t think I have lost any strength for quite some time, but I do sometimes worry about my breathing so that’s the main thing I look out for.
You also play electric wheelchair sports, so how did you get involved?
In 2005 I attended a Muscular Dystrophy Australia camp. At this camp, the Victorian Electric Wheelchair Sports Association ran a demonstration event and as soon as I saw it, I was hooked. I think I have only missed 3-4 rounds since starting in 2005 and I honestly don’t know where I would be today without electric wheelchair sports in my life.
What has been your biggest sporting achievement so far?
I have been so fortunate in that I have represented Australia in both Powerchair Football and Powerchair Hockey. In 2018 I was captain of the Australian Powerchair Hockey team at the World Cup and through this got to travel Europe with my partner and best friend.
On a local level, I love introducing young people in powerchairs to the sport for the first time. I see their excitement and their sense of freedom and think back to how I felt when I was their age!
You’re also strongly involved in disability advocacy in Melbourne. How did you get involved in that and what is your biggest advocacy passion?
One of my good friends encouraged me to join the steering committee of the Youth Disability Advocacy Service (YDAS) in 2014. From there, I learnt so much about the different issues people with disability were facing. On a personal level, I think I used to just ignore the issues I was focusing out in the world that I didn’t really see the impact these issues were having on so many people.
After a few years on the steering committee, I was encouraged to apply for a new position at YDAS and this was for a project called Map Your Future. This was the first job I ever applied for, went to an interview for and I was very lucky to get the job! I am very grateful to YDAS for supporting me and encouraging me to get involved in disability advocacy. My biggest advocacy passion is a combination of inclusion and accessibility.
When I think back to my younger days, I remember feeling so isolated, left out of so many things I wanted to do and that’s why I think I’m very passionate about getting people with disabilities to have options and opportunities just like anyone else, without any barriers.
When you’re not playing sport or advocating, what do you like to do in your free time?
I’m a very chill, laid-back person. I could spend hours and hours playing video games. If a sports match is on, I could be at a pub with friends watching that. I also really love going to the cinemas and binge-watching tv shows at home. One of my goals in 2020 is to try new things and I think go-karting is on the top of my list!
Relationship and dating are not really talked about in the disabled world, especially with interable relationships (able-bodied partner), so how did you meet your girlfriend Rebecca?
You know, we don’t remember how we met! How embarrassing.
Rebecca was a volunteer within the powerchair sports community before she became a nurse, so we met indirectly around that time. But I don’t think we ever had an intentional conversation.
The year before we started dating, Rebecca was coming to our Powerchair Football Nationals as a support worker for one of my teammates. It was on this week that we started chatting, and I don’t think we’ve stopped since. A few months later and I finally asked her to be my girlfriend… And it paid off! She said yes and we’ve never been happier.
What are some of the biggest hurdles/assumptions you’ve had to overcome having a relationship with an able-bodied person?
I think Rebecca gets more frustrated than me. She sees the hurdles and assumptions more than I do or maybe I’m just better at ignoring them.
Some hurdles that I think cause us the most frustration:
Accessibility – I hate being the centre of attention and if we are having dinner with friends, I just want us to be another couple going to dinner, but because of accessibility I always have to be a focus. This can be tiresome especially with big events. Rebecca has had to go to weddings alone, family functions alone – just because of accessibility.
Another assumption is that Rebecca does all of my care. Rebecca is the first to remind people that I was perfectly capable of managing my care and my lifestyle prior to dating her – so why should I be dependent on her for care now. Again, I think this comes down to societies misconception that those with a disability have to always rely on a set person – whether it be family or an individual. And you can’t blame people for that because this is something that still is assumed within the disability sector and within our community.
And can I just say, we often get stares from people out in public if we’re holding hands and we’ve also had many people assume that Rebecca is my support worker, sister and even mum sometimes. Isn’t that just ridiculous!?
If there was one thing you would want the world to know about living with a disability, what would it be?
That I’m a proud disabled person and I wouldn’t change anything about my life. I can work, I can play sport, I can have relationships. Everyone needs to adapt things to their own needs – whether that’s a person with a disability or not. As soon as you assume everyone needs concessions or adaptions you stop seeing those with a disability as people that need extra – and you start seeing them as people who just need something different. I don’t want extra attention or extra support, I sometimes just need things slightly different.