Around 135 million people in the WHO European Region have some form of disability. For some of them, being able to access and understand health information may come with extra challenges. Medical or health-care information can be complex, or the format in which it is presented can be inaccessible. If people don’t receive clear information, they might face difficulties making important health decisions or accessing services at all.
As the COVID-19 pandemic progressed, Poppy Field, a 26-year-old resident of southern England, found herself struggling to understand the ever-changing situation. “I was trying to learn, but it was hard to decipher information that wasn’t in plain English,” she says. “I know it was hard for everyone, but having a cognitive disability added a whole new layer to it. It could take me the entire day to understand how I could get vaccinated. It’s not right.”
Poppy, who is neurodivergent and chronically ill, dedicates a lot of time to promoting disability inclusion and accessibility through working with various organizations and as a podcast host exploring the disabled identity. The concept of accessibility implies that people should be able to get where they need to go, read what they want, and do what they want without anyone’s help. To accomplish this, the environment must be inclusive of different abilities.
Poppy advocates for accessible solutions being integrated into every area of life, and she especially enjoys accessible fashion – her glittery and colourful walking sticks serve as an important element of her outfits and aesthetics. A big milestone in Poppy’s career occurred last year, when she worked on a show at the New York Fashion Week as part of a non-profit specializing in adaptive fashion.
The field of accessibility has seen considerable progress recently due to technological advancements. But the real challenge, Poppy says, is getting people to take it seriously. “My partner is blind,” she explains, “and people don’t always understand that he also needs to access things online. They say, ‘If he’s blind, why would he be online?’ But the truth is, we all consume content differently.”
Equitable access to health information
Universal health coverage implies equity of access to health services as an integral component. In line with this vision, the United Kingdom’s National Health Service introduced the Accessible Information Standard in 2016, which states that all people have the right to accessible information and communication support. For example, blind or low vision patients can request their health information to be in braille, audio format or large print. But a lot of health information remains inaccessible to some communities in the WHO European Region.
One way to make health information more accessible and promote health literacy is to supplement official documents with an easy-read version. This not only caters to people with cognitive and intellectual disabilities, but also youth and those with a different native language. Other accessible formats may include high contrast, image descriptions or a non-white background. Videos may come with subtitles, transcripts or sign language interpretation.
Recently, WHO released its “European Framework for action to achieve the highest attainable standard of health for persons with disabilities 2022–2030” in an easy-read format, with simple sentences and pictures. “I’m glad WHO did that,” Poppy says. “Of course, there will always be issues of conflicting access, where the solution works for some people, but not for others. But having your information in an accessible format should be the gold standard, that’s how you reach the maximum number of people and offer a more seamless, comfortable experience.”
Poppy occasionally uses a wheelchair and walking sticks, but she views her medication as a mobility aid too. “I couldn’t live as comfortably without it,” she explains. “My medication is one of the reasons I can move, work and socialize.” However, while some wheelchairs come with simple manuals and instructions, the leaflets inside medication packages can be extremely hard to understand. “I wish pill boxes would come with easy-read instructions, too. I can always ask my doctors to interpret them, but an easy-read brief would protect the patients’ ownership of their health and body, which is what we want in health care.”
Investment in the future
Sometimes, services don’t uphold accessibility standards because they are seen as unnecessary, a bonus add-on if an organization can afford it. Poppy finds this attitude short-sighted. “We are an ageing population,” she says. “We are going through multiple epidemics and a massive war in Europe. It is reductive to assume that only a few people will experience disability. If you think about it, life is a journey towards disability. Everyone will have to deal with it, even if briefly.”
From this point of view, disability inclusion becomes an investment into one’s future, a solution that might not be used now, but may become necessary one day. “I have friends who are already paying for their pensions,” Poppy says. “And I think, great that you care about your retirement, but how are you going to live when you are 70? What do your relationships with others look like? Because it goes beyond saving money in your twenties. Some people have earthquake or hurricane kits, but have you considered disability? Is your living situation adapted for it?”
Successful disability inclusion is a long process, and it starts with challenging perceptions and stereotypes. “I would like people to reconsider how they view and treat disability,” Poppy concludes. “Sit with it and analyse it. Because it’s not a horror movie. It’s a neutral thing. It’s not good and not bad. It’s just a part of life.”