Difference is part of life. This is true for everyone, but particularly the case when disability is part of our lives, whether our children have a disability, or we have disabilities ourselves. As parents of children with disabilities, it’s irrelevant whether our experience more closely resembles the classic 1987 description entitled Welcome to Holland, which describes life as though everyone around you landed in your planned destination of Venice, while you landed in Holland. A more contemporary description, which compares life to speeding through a hilly town with busy streets, in a car without functioning brakes vs. another experience entirely. Regardless, our lives are different from most of the community. The weird looks, lack of understanding, and the reality that the lives of our so-called peers seem foreign to our reality, are each completely exhausting.
For children with disabilities, their experience as “different” may seem equally, if not more, frustrating during the school year. The special classes, taking tests physically separated from other students, and often with separate instructions than their “typical” classmates, getting individualized help or other accommodations often further reinforces that they’re different. Regardless of how helpful or even necessary these accommodations are for academic success, they can still reinforce negative social stigmas. It’s no wonder then that both children with disabilities and their parents feel overwhelmed. Any opportunity to escape this reality and experience how “others” live. To fit in and belong, even if it’s only for a few weeks, sounds spectacular to parents and children alike. Thus, summer camp, a predominantly controlled environment, not governed by the Individuals With Disabilities Education Act, which legally require the disclosure of disabilities, seems like the perfect opportunity to be discrete and seem “normal.”
On the surface, nondisclosure of nonvisible disabilities seems like a perfect solution. If your child can pass as “normal”, they should be treated normally. Consequently, fit in and therefore, avoid the stigma of difference. The problem is that disabilities don’t disappear. Disabilities, even those most often associated directly with learning, don’t only affect people while they’re in school. Even when settings change or labels are hidden, disabilities always remain.
I understand this as a parent, a former camper with a disability, a staff member on a summer program, where there were campers whose disabilities were disclosed before camp, and campers whose parents chose not to disclose their child’s disability. However, if you don’t want to take my word for it, here is something to think about. According to the American with Disabilities Act a “disability is an impairment or impairments that substantially limits one or more major life activity.” It continues by making clear that a disability exists even if a person “is only perceived by others as having such an impairment.” Major life activities aren’t confined to a singular setting. Furthermore, people’s perceptions are not determined by disclosure of official medical diagnoses, but rather their day-to-day interaction with an individual. The difficulties associated with disability, with or without disclosure, are always present. Just as important, if not more so, we cannot give our children their best chance for success without providing them access to all of the beneficial support available, something that is impossible without disclosure. In short, we need to take the stigma out of disclosure and put success into it.