“I feel exhausted and listless for days on end”

Do you do the shopping quickly on a Saturday afternoon before dealing with the laundry? That’s normal life for most of us, but absolutely impossible for Nicole Haas. The 43-year-old was diagnosed with the neurological and immunological disease ME/CFS at a young age. If she overdoes it, she pays dearly. “All my energy suddenly drains out of me and I feel absolutely exhausted for days – just like after a severe bout of flu,” she explains.

The native of Bern sometimes likens herself to an old mobile phone – it is fully functional, but the battery runs out quickly and has to be continually recharged. While outdated mobile phones can easily be replaced with a new model, ME/CFS is a lifelong condition.

An under-researched condition

Nicole Haas has suffered from the condition for decades – it first hit her with full force during puberty. She kept getting severe colds. It took her an extremely long time to recover after each infection. Her GP was unable to help her – little research had been done into ME/CFS at that time. “I just wanted to live a normal life as a teenager,” Haas recalls. “That’s why I constantly ignored my limits, repeatedly pushing myself well beyond them.”

Nicole Haas is doing well today compared to back then. After looking for a job for a long time, she eventually found a suitable one – she works in a residential home for mentally ill people in Langenthal, helping them to recover by chatting to them. She has also been writing for specialist publications since 2022. Her meticulously researched articles often look at how people with a chronic illness cope with day-to-day life.

Haas’ new career as a part-time journalist is thanks to the “Reporters without Barriers” (RoB) organisation. For three years, it has been working hard to help more people with a disability to pursue a career in the Swiss media. Candidates firstly complete a 15-day introductory course in journalism. The budding reporters can then rely on support from experienced media professionals who supervise them as coaches. The project was awarded funding in the Migros Culture Percentage’s “Diverse Switzerland” competition. It also receives support from foundations and the Swiss School of Journalism (MAZ).

“Very few people with disabilities have worked in the Swiss media so far,” indicates Senad Gafuri, Head of RoB. This has a major influence over reporting. It means the issue of disability is often overlooked. Otherwise, the people affected are often portrayed as victims, but hardly ever as normal members of society. For example, if a wheelchair user is interviewed, the conversation primarily focuses on their health problems and only on their profession or interests secondly. “Reporters without Barriers” adopts a different approach to interviews and tries to report on life with disabilities without reinforcing stereotypes.

Straight talking

Gafuri also wishes to raise awareness of the language used to report on the issue. “People often use shameful descriptions, such as handicap,” he explains. “This term implies the problem lies solely with the person concerned. Using the term disability instead indicates that external obstacles and barriers are also a major factor.”

Gafuri hopes his organisation becomes superfluous at some point in the future. That goal would be achieved when lots of “reporters without barriers” have careers in the sector and contribute their perspective on the world in the media. A total of 11 reporters have been trained so far. Senad Gafuri firmly believes each and every one of them is helping to gradually change public perception of people with disabilities.

The RoB journalists benefit enormously from the project. This is highlighted by the case of Nicole Haas. “I have found a professional home in journalism,” she indicates. “When I write, it gives me a sense of stability, but also real freedom.”

More information on “Reporters without Barriers” can be found at rob.ch