Stressing accountability and positivity, celiac says disease is “what you make of it.”
While outward physical disabilities are easy to identify, “hidden disabilities” like celiac disease often go unnoticed. That can be a blessing or a curse, according to a new study.
In “‘We don’t have a box’: Understanding hidden disability identity utilizing narrative research methodology,” researcher Aimee Burke Valeras analyzed interviews conducted with six individuals, each suffering from a different “hidden” condition. One of the participants had celiac disease.
Based on the interviews, Valeras concluded that individuals diagnosed with conditions that are not outwardly apparent can have “multiplicity and malleability of identity.” While the disease affects them, the individuals also have a certain level of control over the condition—or at least how their response to it.
As the celiac participant noted:
“It’s not a disability, you just need to be more responsible and accept what it is, and deal with it as a diet and not try to look at it as such a handicap. I think I’m more in the middle, where it is a disability. It is something that is an actual disease. But it’s still what you make of it, so it’s not. You can look at it more positively where it’s just your diet. It’s just food. It’s a way of life, and this is the way I’ve adjusted.”
Valeras defined this approach as “bi-ability”:
“Because of their ability to travel between two worlds, these participants tell stories of living on the edge of social, cultural, and political lines and adapting to the situation in which they find themselves at any given moment learning to emphasize or deemphasize various aspects of identity, depending on the pressures of the social context.”