Carolyn Campbell-McLean lives with spinal muscular atrophy. For Inform, she writes about her pursuit of independence and her mission to help others with disabilities follow their dreams.
‘Living your best life’ is a saying we hear thrown around these days. But for people living with a disability this is a particularly meaningful phrase. As someone living with spinal muscular atrophy, or SMA, I know first hand the importance of making the most of every precious moment we have to live a meaningful life.
I was diagnosed with spinal muscular atrophy as a child. The first signs came at 18 months when my mother started to notice me walking oddly, rolling my feet and struggling with stairs. She took me to six doctors before we received a wrong diagnosis of spastic diaplegia. The doctors decided to cut my archilles tendons and put me in plaster for six weeks. After removing the casts I fell to the floor, and from that moment I didn’t walk again. Oddly, I see this as a blessing in disguise, as I don’t ever remember walking. And you don’t miss what you don’t know.
When I officially received a diagnosis for SMA, my parents were told I’d never have a ‘normal’ life. They were told I’d never get married, live independently, travel the world, go to university or even get a job. But despite the challenges of living with a significant physical disability, I did all those things.
1. Live independently
For many people with a disability, living independently is a lifelong dream. While a daunting prospect, by making the right choices, there is an opportunity to curate a life that gives you a sense of freedom and control.
I moved out of home at the age of 19 and, despite doctor predictions, I’ve lived independently for the last 25 years. I’ve realised over the years that a big part of independent living is ensuring you have a strong support network. While I have an incredible family to support me, I made a conscious choice to secure a support team outside of my family using my NDIS package, which I self manage. This has helped me shape my lifestyle to the way I want to live, accessing support when and where I need and keeping roles separate—my family is my family.
“I’ve realised over the years that a big part of independent living is ensuring you have a strong support network.”
2. Go to university
Challenges with obtaining an education presented themselves at a young age for me. I was initially denied enrolment to my local high school, with the fearful principal insisting that my condition would impact the quality of my education, and I’d be better supported at a ‘special school’. However, for most people living with muscular dystrophy, their diagnosis doesn’t affect the brain.
With the support of my parents, I was able to have this decision overturned. I learned and socialised alongside my peers for six successful years, with no additional support. This led to a path to university, where I was able to pursue my passion for making a difference in the community by successfully completing a degree in social work from the University of Western Sydney.
3. Invest in relationships
It’s a common assumption that people living with a disability don’t have relationships, especially intimate relationships. However, we have the same feelings, emotions and challenges as everyone else.
I was blessed to find love at the age of 16, when I met Danny at wheelchair footy. Also living with muscular dystrophy, Danny and I were married in 1996 and we lived together for a wonderful 15 years as husband and wife. Heartbreakingly, I lost Danny due to complications of muscular dystrophy when he was 40. It was the hardest period of my life.
Often left unsaid, one of the hardest things about living with a disability is facing the loss of people around you. I’ve been to over 50 funerals. This poses the incredible mental challenge that comes with overcoming loss. But it’s also taught me the importance of investing in relationships and making the most of the time you have. As the saying goes: it’s better to have loved and lost, than to have never loved at all. And so, four years after I lost Danny, I opened my heart up to Steve, and we’ve been together for 12 years now.
“While SMA may limit me physically, I have learned to harness the strength of my voice and my brain, and carve out a rewarding career for myself.”
4. Get a job
My outlook for getting a job was spurred by a famous quote from Stephen Hawking: ‘my advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with. Don’t be disabled in spirit, as well as physically’. While SMA may limit me physically, I have learned to harness the strength of my voice and my brain, and carve out a rewarding career for myself.
My career in social work was inspired by my late husband Danny. He taught me the importance of supporting people, helping them with the practical and emotional support they need here and now. Danny introduced me to Muscular Dystrophy Foundation Australia (MDFA) and MDNSW. Which is where we were able to connect with others living with muscular dystrophy.
Since losing Danny, I have dedicated my life to supporting others living with muscular dystrophy and what I’ve grown to realise is that often the hardest part of it all is the diagnosis. People need support and guidance. Which is why I supported MDFA with the creation of The Loop—Australia’s first national, community-led neuromuscular resource that aims to make a real difference in our community. With over 70 types of muscular dystrophy, it’s a game changer for people to find information on specific conditions with ease. As well as connect with others who are wheeling a similar path.
5. Travel the world
The prospect of travelling the world is an exciting one. But for people living with a disability this excitement also comes with challenges. The unsettling anticipation of not knowing if you will be able to board a plane or bus to get to where you want to go is one I know all too well.
For so long I had told myself ‘international travel is just not for me’. And ‘I’ll focus on my career, my relationships and my home’. All the while, deep inside I was yearning to travel overseas. I just wasn’t confident I could do it. Something came over me during a bout of ill health in 2016 and I said to myself ‘find the courage within’. And so in 2018 I travelled the US for five whole weeks. I planned my trip extensively, ensuring my partner Steve and I had accessible options and the care we required. Thankfully the planning paid off and it really was our American Dream 2018!
I’m a glass half full person. Which is why despite my condition I continue to persevere to make the most out of my life. Having achieved so many of my goals, my mission now is to help others with disabilities follow their dreams and peer support plays an important part in this. I consider myself lucky to live in a day and age where funding and tech is available, with networks such as The Loop available to connect and support people living with muscular dystrophy. Connecting with others has helped me feel somehow more alive. So my aim now is to inspire others to achieve their goals and truly live their best life.
Carolyn Campbell-McLean has a professional background in social work and communications, and is now a consultant trainer and public speaker. Currently working on a variety of projects in the disability, peer support and training space, Carolyn is well known for her networking and ability to relate to any audience. Successfully recruiting her support team to live independently for the past 20 years, and now self-managing her NDIS package, Carolyn trains and empowers others to build their confidence and take control of their lives.