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When you think of Photo-sensitivity, your mind probably goes to the movie Midnight Sun, or thinks about vampires or something similar. But there are a lot of people out there who suffer with all varieties of sun sensitivity. While it’s very hard to find these students in schools because most of their allergic reactions are so severe that many of them are homeschooled, there are many students who still go to school with this type of disability. I’m one of them. I’ll reference a young girl who has the same disorder I have, but also make it clear why teachers should be more knowledgeable not only about the risks the sun carries, but also the disabilities of students with photosensitivity.
Savannah Fulkerson, an 11 year old girl has a condition called EPP, which makes her allergic to sunlight. Another man with a YouTube channel called Porphyria J also describes his daily life over the summer having EPP as well. The symptoms and time spent outside to have these types of reactions always varies depending on the person, but most individuals can’t be outside for longer than two hours a day. Some individuals can only last about 10-15 minutes outside before a reaction occurs. Regardless of the severity, many individuals confine themselves indoors in order to remove the fear and anxiety of being burned.
While research is coming to light more rapidly about the dangers of the sun, many teachers don’t express those concerns on field trips or carnival days. The problem with that is students like me, who somehow can last two hours before the consequences hit, feels like an outsider and can’t play with the other students during some of these trips, especially once it hits spring and summer. Since the dangers also aren’t talked about, many students don’t have the understanding of why it is necessary for others, especially those who are fair skinned, to have to take all of the necessary precautions. In many cases this leads to bullying, and the person who is suffering feels like an outsider, and their self-esteem drops rapidly.
While there are many individuals that grow up and live with their sun sensitivity, there are also many that are kept prisoner as well. One of the main things though is that teachers don’t know how to handle these types of disabilities since they don’t understand the condition. While teachers can’t understand everything, the important thing to note is that sometimes it’s best to ask what the student’s limitations are, and go from there. While it is important to make sure that they are able to be surrounded by their peers in as much of a normal setting as possible, it’s also important to show empathy and make sure that these students don’t have to fear something.
Also, a word of advice from someone who has had to deal with this for practically her whole life; try to research the condition. Try to find others that have something similar, or the same thing as they do. Suffering with something like this and knowing that there are others like you out there is such a reliving thing to know you’re not alone.
While I always thought of something like this as a curse, I can now take it in stride and know that every student has limitations, and know how to give empathy rather then sympathy. Children with disabilities don’t want your pity, they just want to be treated like everyone else.
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