Sophia Brizo spends four hours a day on what she calls her “disability administrator.”

The 27-year-old PhD student, who has cerebral palsy, said she needed to spend that time on making accommodation and planning choices, because “the world is not accessible.”

Disability Wales said that disabled people face “extreme and often challenging” administration.

A spokesperson for the Welsh Government 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 worker, said it’s everyday things, like planning a train journey or booking a routine medical appointment, that can take time.

He added, “It’s all these little things that add up to your day and for a non-disabled person it takes 30 seconds, whereas for me it can sometimes take you half an hour.”

She said she was lucky because her work in academia meant she had a degree of flexibility in her job, recalling how she recently had to unexpectedly get her walker repaired at a nearby bike shop. Had to leave a meeting.

She said, “I sometimes feel like my disability is a full-time job, and it’s not just because of my own body and the extra care it takes, but it’s mostly because of the inaccessible world we live in.”

The para swimmer from Bergamo, Italy, said that after many problems she recently decided to monitor how much time she spends on these tasks, and calculated that it is four hours a day.

“It’s literally half of my working day and then I have to work on the weekend, but paradoxically, it’s less stressful for me to do my work on the weekend.

“I can’t call about medical appointments on Saturday or Sunday,” she said.

The campaigner said her recent attempt to book a smear test was a good example.

“I am disabled, as stated in my medical records, I need support for my legs, so I need a bed with stirrups.

“They say they will call me back in a few days. A week later I call again, it takes about an hour, it’s a different receptionist, I have to explain everything again.”

Eventually Sophia was able to book an appointment at a nearby medical center, although when she arrived, she had booked the wrong appointment.

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

Employment Relations and Diversity researcher, Professor Debbie Foster of Cardiff University, said that her own poor health and difficulties in returning to work sparked her interest in disability and employment.

“I thought, if I have a lot of information at my fingertips, I’ll know how to read things 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 Disability Rights Task Force, has written extensively on the experience of disabled people in Wales during the Covid-19 pandemic, along with conversations around workplace adjustments.

He said, “We need to think more in terms of an accessible world, and much more in terms of accessible design rather than just making it an individual problem – that’s when you get all the disability admins.”

Sometimes, asking for reasonable adjustments in the workplace can feel like asking for a “special favor,” the professor said.

He added, “There is inherent competence in the way that we have designed everything, because it is the people who are competent, who have done the designing.”

Miranda Evans from Disability Wales said disability-related administration can include navigating welfare benefit applications, searching for equipment to aid independence, researching accessible transport options and navigating the health and social care system.

The organization said it was estimated that 26% of the population of Wales had a disability and with the aging population, this figure would rise to 58% by 2035.

He said that many people with disabilities “face many barriers along this journey, requiring continued perseverance to access the vital resources and support they deserve.”

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

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

“Our Disability Rights Action Plan, scheduled for release in spring 2025, aims to break down barriers and increase participation for all disabled people in Wales.”