From academic to lived experience: how the roles were reversed for this disability expert
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When Professor Kirstein Rummery began researching disability and equality more than three decades ago, little did she know she would one day be living through the same challenges herself.
This University of Stirling professor has progressive psoriatic arthritis and fibromyalgia and walks with crutches. She finds it hard to walk more than 100 metres without stopping for a rest., Her journey navigating the welfare system as a disabled person has been a unique one. As she faced the same frustration and exclusion as she had researched and taught about throughout her career, she found herself in a curious situation of role reversal.
A Professor in Stirling’s Faculty of Social Sciences, Kirstein was first diagnosed with arthritis in 2003, following her second pregnancy. “The pain was put down to the aches of pregnancy, but it never went away,” she says.
As her mobility has deteriorated, so her skills as an academic at Stirling have strengthened, says Kirstein. “Now I have the lived experience of being disabled, it helps me connect with people, from carers to disabled students.”
Kirstein took to the stage at the University of Stirling’s Spring graduation ceremony to share her story with students and colleagues. She told of her failed attempt to secure disability payments to help with everything from mobility to getting dressed in the morning. And she spoke of wanting to be able to enjoy the outdoors with her husband and three children.
After applying for and being turned down for the then Personal Independent Payment, a state-issued top-up for people with disabilities, Kirstein decided not to appeal the decision. More than 75% of appeals against the non-granting of PIP are awarded, she says, but Kirstein had found the process so frustrating that she ended up in hospital. “It triggered some PTSD that I had been diagnosed with. Going through that process was one of the worst things I’ve ever done in my entire life. It was so demeaning.”
In August 2022, PIP was replaced by the Adult Disability Payment in Scotland. The process had been redesigned following close consultation with service users. As an academic and expert in the field, Kirstein was consulted too. “That was a game changer,” says Kirstein, who applied and was successful.
Professor, Faculty of Social Sciences
Now I have the lived experience of being disabled, it helps me connect with people, from carers to disabled students.
Sharing the stage with Kirstein at the graduation ceremony was the person she credits with being integral in changing the system: Dr Sally Witcher OBE, disability campaigner and former chair of the Scottish Commission on Social Security. On Kirstein’s recommendation, Dr Witcher received an Honorary Doctorate from the University of Stirling for her work as a campaigner on disability and inclusion.
“Sally has been integral to making my life easier, thanks to her role in replacing PIP with ADP, and in improving the process for applying for the payments, from the interviews that are carried out to the forms that are filled in. I haven’t changed, but the system has: it’s much better and fairer and that’s down to Sally’s work. I’m hugely grateful and wanted to show that with this nomination,” says Kirstein.
Kirstein has just been awarded an ADP and with the payment has been able to purchase a mobility scooter – a purple one she has christened Penelope. “I plan to be able to get out more with my family, and not just be sat on a bench somewhere while they walk around and enjoy the scenery,” she says.
She will shortly introduce Penelope to the University of Stirling campus in her latest step in a journey to educate, both her students and her colleagues, about disability.
Dr Sally Witcher, who received an Honorary doctorate at the University of Stirling in March.