Choosing the Beautiful Stuff
A story of courage
Anita Tang has known Carolyn Campbell McLean since she was a social work student on placement — sunny, determined, and impossible not to admire. Living with a progressive disability since childhood, Carolyn has faced challenges that might have left others bitter. What Anita sees as extraordinary courage, Carolyn experiences as a daily choice to focus on the beautiful stuff.
In every Finding Courage story, one person sees another’s courage. The other lives it.
SEEN BY ANITA TANG…
Anita Tang (62) has spent almost 40 years working professionally and as a volunteer to lead people-powered social change.
I first met Carolyn as a social work student when she did a placement at my workplace. Nobody can meet Carolyn without being impressed by her sunny disposition, her positive outlook, her determination.
Carolyn has a form of muscular dystrophy. It’s quite a significant disability. She can’t get herself in and out of bed, can’t toilet herself and relies on a powered wheelchair. Every step of her 51 years has been harder than for most of us: school, university, relationships, jobs. Yet she has managed to fashion a rich, fulfilling, positive life.
She built a career in advocacy and education.
She self-manages the NDIS for herself and her partner Steve, employing and coordinating their own support workers.
She owns her own fully accessible villa in Rydalmere.
She has a big network of friends, including me.
I see courage in Carolyn’s resilience: her determination not to let life beat her.
I see courage in her advocacy, speaking out against entrenched power, institutions and government.
I see courage in the way she managed her grief after the tragic death of her husband Danny.
You can be courageous through gritted teeth, but Carolyn’s courage always comes through a smile.
She has an incredible capacity to find joy in the everyday. Sitting in the backyard sun and watching the birds. Spending time with her niece and nephew. Crafting.
Yet she aims high. A few years ago, she and Steve did a 6-week trip across the United States. The logistics involved in that trip were phenomenal. She had to take paid carers – finding people she trusted and then managing a roster. Every detail had to be researched meticulously. It wasn’t enough that the accommodation website said: “accessible”. She needed to know there was room under the bed for the hoist to get her up in the morning. To me, it was courageous for her to even imagine they could go to the United States, let alone to do it.
That’s the thing with Carolyn. She has the courage to dream big and then make it happen. That’s been true of her job, her house, her travel, her life.
LIVED BY CAROLYN…
I’m an optimist.
There are plenty of people in my position who aren’t as positive. I don’t know if it’s just built into my DNA, but I do think being positive is a choice. We have to choose to be happy, to be kind, to be generous to others. Otherwise we miss out on all the beautiful stuff.
It’s not always easy, but it’s the choice I want to make in my life.
Carolyn in a Wheelchair
My Mum knew instinctively that there was something wrong when I wasn’t walking properly at age 2. At first the doctors told her not to worry. Then they wrongly diagnosed me with cerebral palsy. “She’s got tension in her ankles,” they said and proceeded to cut my Achilles tendon. I went from walking badly to not walking at all.
That turned out to be a mixed blessing. The doctors eventually diagnosed Spinal Muscular Atrophy, which causes progressive muscle wasting. I would have stopped walking by the time I was 10 or 11. Most people struggle when they lose function. I didn’t have to do that.
I grew up being Carolyn in a wheelchair.
Just One of the Kids
I started in a special school for children with disabilities. Pretty quickly, the teachers told my parents that I needed more academic and social stimulation. But the physios and occupational therapists (OT’s) were saying I wouldn’t thrive without the daily therapy at the special school. I’m forever grateful that my parents chose to integrate me into the local school.
I loved primary school. I was just one of the kids. I might not have been able to run about the playground, but I could play marbles and turn the skipping rope. Everyone loved jumping on the back of my wheelchair – a great way to be popular.
The school was over 100 years old, so not very accessible. The year six classroom was on the second floor. The principal and the teacher agreed to move the classroom downstairs, but the parents complained. It contravened their children’s rights to access the upstairs classroom. So the year six classroom remained on the second floor.
Every morning my principal would drag me up 3 flights of stairs using a step climbing machine. I was left in the classroom at recess and lunch. My parents were outraged and I was very lonely.
After that experience, my parents found a more accessible high school, but the principal denied my enrolment. “We don’t support children with disabilities here.” My parents complained to the Department of Education, which eventually ruled that enrolment could not be denied based on disability.
Kids get a bit nastier by the time they reach high school. It was hard sometimes and there was bullying. But I had a bunch of good friends. We’d go bowling together, and they threw me a surprise party for my 17th birthday.
So yes, there were some bad times at school, but I think that’s everyone’s school experience.
I graduated with my HSC and a pretty good ATAR (it was called a TER back then). I only got detention once or twice. I thrived on the humanities subjects. And I got myself into a social work degree at Western Sydney University
.
Taken by the Storm
I was 16 when I met the love of my life. Danny was a bit older than me. He had Duchenne Muscular Dystrophy, a life-limiting disability that eventually takes away all your muscles, including those used for breathing and swallowing. It’s a much more severe condition than mine, but at the time we had a similar level of function.
Five years later we married in the Botanic Gardens. The happiest day of my life.
We knew it wouldn’t be forever, so we tried to make every moment count. We had a home, a garden, cats. We travelled and went to endless concerts, cricket and football games. Danny was a massive Tigers fan.
We’d been married for nine years, and Danny was getting weaker. He was on BiPAP to keep him breathing.
It was 6am on a Sunday. We were still living our best life. We’d been to the movies and then to a cricket match. A thunderstorm came over, and the power went out. The BiPAP machine’s backup battery failed.
I heard him gasping, but obviously I couldn’t just jump out of bed. Without power, the electronic front door button didn’t work, so I couldn’t let people in easily. By the time I contacted the neighbour with the spare key and the ambulance arrived, Danny was in cardiac arrest.
The paramedics got him breathing again, and we went to Westmead Hospital. I remember telling the doctors, “Don’t not save him because he’s got Muscular Dystrophy. Do everything you can to save him because he’s my husband and he’s got a beautiful life.”
But when I saw him lying in the bed, I knew he was gone.
That was probably the hardest time in my life.
By then, we’d seen at least ten of our friends die slow, painful deaths. I found solace in knowing he was taken by the storm, not the disease.
Keeping Up with Me
I was only 30 when Danny died. I’d known what love was and how good it could be. Prince Charming was not going to walk through my door. I had to go out and find him. Three years later I entered the world of online dating.
There were people from Africa wanting me to send money. Lots of guys said things like, “I like abseiling, do you?” I kept trying different platforms, and eventually I got onto “Whispers for You”, a dedicated disability dating website. That’s how I met Steve.
Steve has a mild disability which affects his gait. Our first date was at the Easter Show. He was walking, and I was driving my wheelchair. I encouraged him to test out one of the scooters you can hire.
He said, “What do I need a scooter for?”
“To keep up with me,” I replied.
He never looked back. The next week his grandmother bought him a scooter, and he’s been keeping up with me ever since.
Pretty Stickers
I started a scrapbook to record Danny’s wheelchair sporting achievements in 2000. I haven’t stopped.
Now I do journalling as well, writing down how much I have to be grateful for.
When you’ve had enough of the world, you get some pretty stickers and beautiful pieces of paper, and you cut and paste and do things with your hands.
Sometimes you get sick of thinking about disability, and you just want to think about stickers.
Testing at the Door
Covid was hard. I genuinely thought I was going to die.
I rely on carers to get in and out of bed, go to the toilet, prepare my meals. But what if a carer brought Covid into the house? What if my carers refused to come because they were afraid to get Covid?
I didn’t want to be one of those names on the news who “died with an underlying medical condition.”
I had my carers test at the front door every time they came into our house. I was pretty quickly out of pocket over $1,300 for RAT tests. None of it was covered by NDIS, even though group homes and nursing homes got funding for tests.
I was featured in The Guardian and went on The Project, saying I didn’t think this was fair. Two days later the NDIS announced a policy change. Covid tests would be funded for all care workers.
People are beautiful. Some random person sent me an email, “I just read about you in The Guardian and I’m sending you $1,000 towards your RAT tests.” I didn’t even know who they were, but the money showed up.
I had friends sending their kids with toilet paper, baby wipes and groceries. Anita found me a contact with a big supply of masks.
Covid was shit. But people’s response to Covid was so positive and caring.
Support in the Here and Now
Danny’s Mum taught me years ago that you can raise all the money you want for research and cures, but you can’t forget to support the families affected.
My social work career is all about supporting people in the here and now.
For the last six years I’ve been running the Peer Connect program for Muscular Dystrophy NSW.
People plod along for years without peer support. They have family, friends, doctors, OTs, social workers, carers…but there’s magic in connecting with someone who lives a similar life. Because no one else can ever really understand.
I love my job. Connecting people is my forte.
But I am hoping to retire in the next couple of years. I’m investigating whether I can access my super early with a medical retirement or something.
I’m definitely not going to do a David Attenborough. My life will be shorter than the average Joe, and I want to have time to do things with Steve, care for my parents, volunteer more, teach craft classes…
Just Take her Home
In the long-ago days when I was diagnosed, doctors said stupid things like, “She’ll never lead a normal life. Just take her home and love her.” My parents were having none of that. Put her into school. Put her into Brownies. Get her swimming lessons. Take her on holiday. That was their attitude.
My sister came along three years after me. She was a baby when I was diagnosed with SMA and our family discovered there was a 1 in 4 chance of her children being affected. When her husband wanted genetic testing before they had children, she was surprised. She told me, “I just thought if I had a kid with SMA, I’d bring them up, just like Mum did with you.” I can’t tell you how validating that was.
I’ve been incredibly lucky. Not just in my family, but in my close friends who have shown up for me, treated me like any other person and supported me again and again.
I don’t really think of myself as courageous, but I do know I have inner strength. My whole life, my body has been getting weaker physically, but I’m getting stronger mentally and emotionally.
Not being able to blow your own nose, wipe your own bum or do things when you want to is hard. But it makes you more innovative, more determined, more resilient.
Photos provided by Carolyn Campbell McLean
Love this story! What a woman...