Invisible disability: You can’t be what you can’t see
Invisible disability: You can’t be what you can’t see
When they hear the word "disability" many people immediately think of people in wheelchairs and perhaps of the blind or people with amputated limbs. In other words, people usually associate visible impairments with this term. Yet not every disability can be recognized at first glance – and sometimes not even at a second glance.
Autism, diabetes, epilepsy or multiple sclerosis – normally you don’t realize people are affected by these disorders just by looking at them. There are many disabilities and chronic illnesses, whose symptoms are not directly visible to others. These range from visual impairments to organ dysfunction all the way to mental disorders.
Doctor of Education D.Ed. Carolin Tillmann is an assistant professor at the Department of Social and Rehabilitation Studies at the Philipps University of Marburg, Germany. "I was surprised to find that the social impacts of invisible disability are a relatively minor concern in research, training, and public (inclusion) debates," says the Ambassador for Inclusion, who herself is affected by a chronic disorder and its numerous invisible symptoms. This realization sparked her interest in taking her scientific perspective into the field.
Her research primarily focuses on the societal and social consequences of chronic illnesses, with an emphasis on those symptoms that are not immediately visible and noticeable. "I am interested in the experiences people with chronic illnesses make due to their invisible symptoms: to what extent does the lack of visibility cause problems when they interact with other people? Do people with invisible disabilities feel disadvantaged or discriminated against by others?" asks Tillmann. "My goal is to ultimately have these findings contribute to foster inclusion and accessibility for people with chronic illnesses and invisible symptoms."
After all, equal participation in society is not a given and implicit, neither for people with visible nor invisible disabilities. Especially when it comes to invisible symptoms, there is often a lack of understanding, leading to prejudices and misinterpretations by others. After all, something that is not visible is quickly questioned for its existence. These circumstances can pose a considerable challenge for the affected persons.
Tillmann has conducted a comprehensive study on experiences with discrimination as it relates to a rare chronic illness called Lupus erythematosus. Lupus is associated with visible and invisible symptoms. "Due to reduced performance related to the disease, 52 percent of respondents were judged to be 'lazy' by others. 46 percent have already been told along the way that they are 'simulating' based on the invisibility of their ailment," reports Tillmann. "Those are misinterpretations or prejudices that do not just apply to people suffering from lupus. Especially in the case of invisible impairments, being categorized as 'lazy' and/or 'simulating' happens very quickly." People try to understand their environment by interpreting it, according to Tillmann. That is why invisible disabilities not only force affected people to have to explain themselves, but also for fellow human beings to interpret something that’s inexplicable and it often leads to misconceptions.
Many people with chronic diseases are affected by symptoms such as exhaustion and fatigue. This extreme tiredness or fatigue can be described as an invisible disability because these symptoms considerably limit the affected persons and are often not associated with the actual, invisible underlying disorder – something that Katarina B. reveals in an interview with REHACARE.com.
"According to my study, more than 90 percent of respondents already experienced a lack of understanding and subsequent discrimination due to exhaustion or fatigue; for approximately 60 percent this is actually a common or very frequent experience," says Tillmann. "In this example, a large percentage of people is subjected to discrimination."
The scientist also states that far too often people with invisible disabilities and their needs are still overlooked in research studies and debates on inclusion and accessibility. Generally, accessibility is associated with ramps, sign language interpretation and perhaps simple language. "But what about those people, who have invisible impairments such as extreme exhaustion due to a severe illness or aggressive chemical drug therapy such as chemotherapy for example?" Tillmann points out. "For them, accessibility would mean being able to participate in meetings via video conferencing or for team meetings to take place in so-called 'virtual classrooms'."
Tillmann also points out that it is desirable but not without problems to put people with chronic illness on a par with people with disabilities. That’s due to the fact that chronic illness, in contrast to disability, is not part of discrimination as defined by the German General Act on Equal Treatment. "It is not easy to identify whether and how chronically ill people are subject to the current legally defined concept of disability. This can be a major obstacle for chronically ill people," says Tillmann.
She is convinced that experiences of discrimination of persons with chronic disease and often invisible disabilities could decrease with a corresponding clarification by the legislator. She adds that other European countries such as the Netherlands and Romania already protect chronic disease from discrimination under the law. This is still a long way away in Germany but definitely desirable. "In addition to legal protection against discrimination, we still need many creative solutions and discussions for accessible design to create an adequate environment for people with chronic conditions."