The Stigmatized Home

Why Parents Delay Removing Architectural Barriers

Abstract

When a child with severe chronic mobility problems becomes too heavy or too cumbersome to lift and to carry, parents must consider removing architectural barriers in the home. Practical and psychological difficulties frequently cause them to postpone making such changes until a crisis occurs. Practical difficulties include lack of resources, gaps in services, and a general disregard by medical personnel of how environments affect behavior. Psychological difficulties, which have so far received little attention, mainly stem (a) from conflict between the parents' desire for an idealized house and their child's functional requirements, and (b) from the parents1 desire to appear as "normal" as their neighbors. Adapting the home means accepting the permanence of the disability.

It also means making the family's disability public -stigmatizing the house, and thus its occupants. These conclusions are based upon interviews with six families raising children who have severe mobility problems, as well as upon residential histories taken from parents of these families and upon drawings of one's "ideal" home made separately by parents and the "physically challenged child."