‘I’m 27, and my disability admin feels like a full-time job’ | Global News Avenue

Sofia Brizzo spends four hours a day doing what she calls “disability management.”

The 27-year-old PhD student, who has cerebral palsy, said she needed to spend time arranging accommodation and planning alternatives because “the world is inaccessible”.

Disability Affairs Wales said disabled people were burdened with an “enormous and often daunting” administrative workload.

A Welsh Government spokesman said it was committed to supporting the rights of all disabled people and creating an inclusive society.

Sophia, from Cardiff, who is also a disability campaigner, said it was day-to-day stuff, such as planning a train journey or booking a routine medical appointment, that could take time.

“All these little things make your day brighter, and for a non-disabled person it might take 30 seconds, for me sometimes it might take half an hour,” she added.

She says she is lucky because her job in academia means she has some flexibility in her work, recalling how recently she had to unexpectedly leave a meeting to go to a nearby bike shop to get her walker repaired.

“I feel like my disability is a full-time job at times, not just because of my own body and the extra care it requires, but mostly because we live in an inaccessible world,” she said.

The para-swimmer from Bergamo, Italy, said she recently decided to monitor the time she spent on these tasks and calculated four hours a day after experiencing a series of problems.

“That’s literally half my working day, and then I end up having to work on the weekends, but paradoxically it’s less stressful for me to do the work on the weekends.

“I can’t call on a Saturday or Sunday to make a medical appointment,” she added.

The activist said a recent attempt to book her smear test was a case in point.

“As stated in my medical records, I have a disability and my legs need support, so I need a bed with stirrups.

“They said they would call me back in a few days. I called again a week later, it took about an hour, it was a different receptionist and I had to explain everything again.”

Eventually, Sophia made an appointment at a nearby medical center, although when she arrived, they booked the wrong appointment.

“The whole thing was a disaster,” she said.

Professor Debbie Foster, an employment relations and diversity researcher at Cardiff University, said her own ill health and difficulties returning to work sparked her interest in disability and employment.

“I figured if I had a lot of information at my fingertips, I’d know how to read about laws and rights.

“What about other people who don’t have access to that information?”

The academic, who is also co-chair of the Welsh Government’s Disability Rights Working Group, has written extensively about workplace adjustment negotiations and the experiences of disabled people in Wales during the Covid-19 pandemic.

She added: “We need to think more about the accessible world, think more about accessible design, rather than just treating it as a separate issue – that’s when you get all disabled people managed.”

The professor said sometimes asking for reasonable adjustments in the workplace can feel like asking for a “special favour”.

“The way we design everything incorporates ableism because the design is done by able-bodied people,” she adds.

Miranda Evans, from Disability Wales, said disability-related management could include dealing with welfare benefits claims, finding equipment to aid independence, looking at accessible transport options and dealing with the health and social care system.

The organization said an estimated 26% of the Welsh population are disabled, with this figure set to increase to 58% by 2035 as the population ages.

She added that many people with disabilities “face multiple obstacles throughout their journey and need to persevere to get the vital resources and support they deserve.”

She added: “This systemic complexity often exacerbates their struggles, highlighting the urgent need for reform and greater access.”

A Welsh Government spokesman said it was committed to “creating an inclusive and accessible society”.

“Our Disability Rights Action Plan will be published in spring 2025 and will aim to remove barriers and strengthen participation for all disabled people in Wales.”