Living with a rare condition inspired Cork woman to start her own business

Living with a rare and often misunderstood condition inspired Cork woman Deirdre O’Grady to set up her own business.

Deirdre, from Lissarda, and her two children Kerri, 25, and Aaron, 19, have a rare connective tissue disorder called Ehlers-Danlos Syndrome (EDS).

“It affects us from head to toe,” said Deirdre, who won ‘Emerging Businesswoman’ at the recent Network Cork businesswoman of the year awards.

“As it affects joints, it has resulted in my early-onset severe osteoarthritis. Because of this, I had my first hip replacement at the age of 27,and my second hip was replaced three years ago. My first hip replacement is due to be replaced later this year.

“I also have osteoarthritis in my spine so I get biannual spinal injections to assist with pain management. EDS also causes dysautonomia which means my autonomic nervous system doesn’t work well, resulting in blood pressure and heart rate fluctuations,which cause nausea, dizziness, fatigue, and fainting or near-fainting,” she said.

Not that Deirdre lets the condition hold her back, in fact her determination to bring about change and true inclusivity is what spurs her on.

“As a child, I dreamt of working within healthcare and started volunteering in the area when I was 12. I haven’t stopped since.

“My work within healthcare has been extensive and provided the foundation for the ladder towards AbilityWise. Before starting AbilityWise, I spent 11 years working as a rehabilitation therapist. This extremely versatile and fulfilling role enabled a co-productive approach to non-clinical care to ensure a holistic approach within residential centres,” said Deirdre.

It was through her professional and academic experiences, and her own lived experience, that she identified “a clear gap between policy and inclusive practices”, which saw her take the plunge to go out on her own in 2023.

“AbilityWise channels my passion to create environments where disabled people are not just included, but truly valued. Although the majority of organisations strive to be inclusive, many lack the understanding or tools to implement meaningful change. As someone with both lived and professional experience in disability advocacy, I knew I could assist with bridging that gap.

“Starting AbilityWise has been my way of turning my passion for true inclusivity into action by educating, challenging biases, and helping build a more equitable society,” said Deirdre.

A typical day could see her training multinational organisations, or consulting with authors, screenwriters, etc, who want to accurately include the disabled community in their work.

“A lot of my training is developed on a bespoke basis following a consultation with each client to ensure the content is as industry and client specific as possible. Creating bespoke courses can be time-consuming but ensures clients’ needs are met each time,” she said.

Also worth noting is that there’s 90% reimbursement of costs for disability, equality and inclusion training through the Department of Social Protection’s Work & Access Scheme. AbilityWise also donates back the 10% excess to charities to ensure 100% cost-neutral training.

EDS means Deirdre also has chronic fatigue, which she says makes running a business challenging at times.

“But as they say, if you love your job, you’ll never work a day in your life. I am so passionate about my work with AbilityWise, it helps enormously.

“As Kerri and Aaron both have EDS, so I am also a family carer. When they were younger, they were both extremely unwell and unfortunately spent a great deal of their childhoods in hospital. Navigating through the world of rare conditions without specialist knowledge of it in Ireland has been challenging.

“To have a rare and all too often misunderstood condition can often place the patient and carers into the role of expert. Some days are harder than others,but my personal experience as both a person who has a disability and a family carer, allows me to provide authentic training that reflects the true realities of living with disabilities.”

AbilityWise is very much a family affair: “Both of my children assist with training at times by sharing their experience with their disabilities. Kerri,hasjust completed a train-the-trainer qualification to assist her with facilitating courses with AbilityWise.My husband, Tim, does my accounts, so AbilityWise pulls in all the family.”

Joining Network Cork has connected Deirdre to “many wonderful, like-minded professionals who are committed to supporting each other and enveloping members into a community of strength through authentic relationships”.

And winning the Emerging Businesswoman award was a big moment, she said.

“It’s validation of the passion, hard work and purpose behind what I do.

“It highlights the relevance of disability equality and inclusion in today’s world. For me, as a businesswoman who has a disability, it’s a celebration of resilience, community, and the belief that we all have the power for change.”