If you are a keen reader you may already be familiar with Caro Llewellyn’s work.
Llewellyn is the author of four non-fiction works, including the 2020 Stella Prize-shortlisted memoir Diving into Glass, which explores her father’s experiences with polio, her own multiple sclerosis (MS) diagnosis and the realities of living with a disability.
She is the former CEO of the Wheeler Centre and served as artistic director of several large-scale literary festivals, including the Sydney Writers’ Festival, the PEN World Voices Festival in New York, the New Literature from Europe Festival also in New York, and the Paris-based Festival des Écrivains du Monde.
MS Australia sat down with Caro on The Raw Nerve podcast to discuss her publishing career, her love of books, the challenges she faced following her MS diagnosis, and how her father’s extraordinary positive example shaped her perspective on disability.
MS Diagnosis
Caro was diagnosed with MS in 2009 after a series of symptoms which, initially presumed to be caused by stress, led her to seek medical advice.
“I couldn’t feel my little finger… I would be tripping a lot and I couldn’t quite work out what was going on. I had a weird numbness in my legs [that] just came and went…And I thought, ‘Something’s going on’”.
Her ‘sledgehammer diagnosis’ of MS was a struggle to come to terms with. Caro’s father contracted polio at age 20 and was 95 per cent paralysed. Upon reflection, his gracious approach to his condition was one that she wished she’d carried with her in the face of her own diagnosis.
Through the 1970s and ’80s, Llewellyn’s father was a staunch advocate for the disability community, advocating for the widespread implementation of ramps and handrails in public spaces throughout Australia.
Throughout Caro’s childhood, her father talked openly about the positive impact his disability had on his life. She describes him as a trailblazer and someone who took pride in embracing the adversity he faced.
“He was incredibly strong, …and gracious… about his disability. And yet, when I was [faced] with a similar thing, I was very ungracious and not in a good place at all.”
Llewellyn took a couple of years to grieve and process her diagnosis. “We all have different stages of grief and … working these kinds of things out, and I was just a bit slow… I was just too busy being angry to just get on and enjoy my life.”
MS impact on work
At the time of her diagnosis, Caro was working in publishing and living in New York. She experienced a wide range of unusual symptoms, and at some point, her eyesight was impacted to such a degree that she thought she wouldn’t be able to read again.
“That was quite scary. In fact, I didn’t tell anybody that. I didn’t include that detail in the book because I needed to make sure that I could keep working… My job is reading books in part…I knew that if I couldn’t read long-term, that I wouldn’t be able to do my job.”
During an interview with the ABC promoting her 2019 book ‘Diving into Glass’, she publicly shared her struggles with her eyesight and reading for the first time.
“I surprised myself that I said it. But I think it’s really important that we talk honestly about how difficult all of this is and how scary it can be…if you think you’re going to lose your source of income, and your wellbeing and your identity as a person through your illness.”
Working in the disability sector
Caro’s childhood was shaped by witnessing her father’s constant struggles with buildings inaccessible for his wheelchair, fueling her passion to advocate for accessible and appropriate living environments for people with disabilities.
In 2020, Caro was asked to join the Summer Foundation as a member of the board of directors, an organisation established to prevent young people with disability from being forced to live in aged care.
She reflects that her work in disability advocacy with the Summer Foundation was an unexpected but full-circle opportunity.
“If you said to me as a 30-year-old, ‘you’re going to be walking in your dad’s footsteps and doing work in the disability area,’ I would’ve said you had rocks in your head. But it’s amazing to be able to do that and to have the opportunity.”
Positive impact of exercise
After returning to Australia from the US in 2017, Caro struggled to walk and lacked balance and strength in her legs. Her son encouraged her to get into exercise, and despite her initial reluctance, she has found that movement has significantly helped her regain mobility.
Working at Museums Victoria at the time meant that Caro had to do a lot of walking throughout her week. To adjust, she bought herself a trike which she rode through the museum and around the city.
The strength in her body is now greatly improved, and she is reinvigorated by the autonomy regular movement and exercise give her.
After discovering the barriers to using fitness apps which are often made for non-disabled people, Caro set out to create DiversiFit, a platform for more adaptive and inclusive exercise workouts for people living with disability.
Set to launch in early 2024, the app’s goal is to encourage exercise and movement for people of all ages and levels of disability.
“I think so often we have to adapt to what everyone else is doing and make it our own, and this is actually for us… And it’s not only for people with multiple sclerosis, if you are living with a prosthetic…[use] a wheelchair, there are exercises for everybody.”
Caro Llewellyn’s penchant for finding opportunities to enact positive change through adversity underpins her strong belief in self-empowerment.
When asked what advice she would give herself in 2009, Caro replied, “Don’t be so hard on yourself and don’t let anybody tell you that you can’t do the things that you want to do and how to do them. Life doesn’t stop with MS…it goes on a different course, but it’s still every bit as rich.”
To hear more about Caro’s MS journey, you can listen to the full podcast episode here.
For more stories like Caro’s, follow The Raw Nerve on Spotify or Apple Podcasts.
