The information campaign on invisible disabilities made by AICCA, the Italian Association of Congenital Heart Diseases for Children and Adults
And tools to discreetly signal them, like a dark green cord with sunflowers drawn on it
Queuing at the supermarket, at a museum ticket office or at an airport, it may happen to see a person with a dark green lanyard with sunflowers drawn on it around his neck. It was created in 2016 by the British association Hidden Disabilities, one of those that deal with invisible disabilities, i.e. disabilities that cannot be seen with the “naked eye”. The lanyard, which is used in many countries, including Italy, is used to ensure that that person gets the right of way or assistance to which he or she is entitled. Or just signaling to the rest of the line that it might be a little slower.
Pamela De Rosa, representative of APMARR, the National Association of People with Rheumatological and Rare Diseases, has an invisible disability on which she manages an Instagram page and a Facebook page, and says she uses the lanyard with sunflowers very often. She has been recognized as having an 80 percent disability, even if she does not have a well-defined pathology, rather a set of rheumatic, pulmonary, neurological, connective, metabolic and cardiological conditions for which she cannot stand too long or walk too much long, among other things. The medications she takes also cause her to have to go to the bathroom quickly.
“Unless you spend some time with me, even just an afternoon shopping, you don’t notice all these things,” she explained. De Rosa is a woman who travels, she loves snorkelling and going to concerts, but when she does all this she has to think about a series of precautions. For example, she said that when she goes to concerts she takes a small folding chair with her that is all folded up in her bag because she cannot stand for too long.
Marco, a man suffering from multiple sclerosis, spoke instead of the many problems caused by his pathology: «Premature fatigue is one of them: I can’t walk for long distances or stand up for too long, otherwise I suffer from spasms and muscle cramps . I also have continuous tingling, moments of instability in which I lose my balance, dizziness and diplopia [visione doppia, ndr], as well as ringing in the ears. Marco also talked about the exceptional frequency with which he needs to go to the bathroom: «When I go somewhere I have to map the areas to make sure there are bathrooms, and if I don’t do this I can have real psychological blocks».
Marco has a pathology that cannot be seen, because he walks, works, talks, moves independently; but he still had to buy a car with an automatic gearbox because he didn’t have strength in his legs, and change his job: «Before I was a driving instructor on land vehicles at the airport, but the assessment of my pathology led upon revocation of the licence.
In the common imagination, disability is associated with wheelchairs, dedicated bathrooms with raised toilet bowls and white grab bars, walking sticks or other objects. But this is not always the case, and even if they do not make use of all these objects, people with invisible disabilities have to face continuous barriers. Tools such as the lanyard with sunflowers are used to signal it.
De Rosa said that in countries and contexts where staff have been adequately trained on invisible disabilities, they have had very positive experiences. In Italy it happened to her at the Egyptian Museum in Turin, where, seeing the string with sunflowers, the staff gave her the discount she was entitled to, gave the free ticket to her companion, asked if she needed a wheelchair and gave directions about where to find toilets on each floor and chairs to sit on when he needed them.
In addition to discretely signaling your need for assistance, the sunflower lanyard can be used to indicate that there is a reason why you are using reserved lanes or parking spaces. Raluca-Bianca Nedesca, psychologist of AICCA, the Italian Association of Congenital Heart Diseases for Children and Adults, explained that people with invisible disabilities sometimes receive insults or suffer verbal attacks, because as they walk independently after having parked their car in a place for disabled or standing in a reserved row, perhaps in a crowded place, are considered liars: “Episodes of this type are the order of the day,” explained Marco.
Other times people with invisible disabilities provoke impatient reactions from those who consider them slow, or lazy, because they take longer than others to do things.
Some estimates have been made on the spread of invisible disabilities – or “not visible” or “hidden”, the terms vary – one of the most recent is contained in a report this year by the British government, which says that 80 per 100 of the disabilities in the world are not visible: that is, very many. However, it is a rather elastic concept, also because they can be considered invisible disabilities caused by pathologies in the initial stages, which then become visible over time.
Invisible disabilities are also congenital heart disease, i.e. heart malformations present from birth, those dealt with by AICCA, which recently conducted an information campaign on the subject: «There are many levels of complexity of congenital heart disease, depending on the severity and presence of other diseases. The more complex shapes can have a very impact, and some people are forced to leave work and reduce physical effort to a minimum: even leaving the house or walking can be very tiring», explained Nedesca.
Finally, invisible disabilities can be mental health conditions, including certain personality disorders, such as borderline or bipolar disorder, autism, schizophrenia, or conditions of depression or anxiety that can lead to panic attacks.
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In addition to Hidden Disability, there are also other associations and projects that provide information on invisible disabilities in different ways and languages: for example Invisible Disabilities, a US association, or the Invisible disability project, a cultural movement that aims to combat the stigma associated to disability and more generally to promote inclusiveness.
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