All too often, people with disabilities and their families are met with more pity than understanding–when you’re so busy feeling bad for someone’s circumstances, it can be easy to forget that they have their own perspective, a point of view developed from their own experience, rather than society’s vague ideas about what a differently-abled life is and isn’t.
In a poignant essay for Buzzfeed, Anne Suslak reflects on her relationship with her disabled twin brother Jack. While both were born prematurely, weighing only about 3 pounds each, Jack experienced a brain hemmorrage that left him with cerebral palsy, hydropcephalus, and epilepsy–conditions that rendered him unable to walk, talk, or “interpret images he sees.”
But while growing up with Jack made her childhood different than most, it wasn’t the never-ending tragedy that many people she meets seem to assume it is–she remembers fun games her family played with Jack in the car and at the dinner table, the way it brought them together and made the everyday exciting. Accommodating Jack’s needs hasn’t made her life worse–the most awkward part of the situation to navigate, it seems, is accommodating the discomfort of the people she confides in. She speaks of having to “break the news” to anyone who asks about her family, feeling guilty about making the conversation “awkward. “The greatest emotional distress Jack has ever caused me,” she writes, “is worrying that I’m not worried enough, which is a luxury problem.”
Of course, as Suslak acknowledges, everyone’s experience with disability is different. While she loves to answer questions about her brother, that may not be the case for everyone. But what’s important to remember is that people dealing with disabilities, whether their own or their family members’, are more than just a target for your pitying looks–well-meaning or not. They’re people, too. Have a conversation. As Suslak says: “My brother isn’t a sob story, he’s just Jack.”
Read more of Suslak’s story at Buzzfeed News.