6:38pm May 15, 2014

“As Andrew Solomon shows in his book Far from the Tree (2012), most disabled people are understood as foreigners within their own families, as an interruption in the continuity of sameness upon which familial solidarity is founded. The narrative of likeness crucial to group unity fractures critically with the arrival of disability to a family or circle. This does not mean that disabled people are unloved or unaccepted within families or communities, but it suggests another way that congenital or early-onset disability can be understood as some version of wrongness, often a benevolent wrongness, because it violates the anticipated continuity of sameness as nondisabled status within families. In other words, the seeming wrongness of congenital disability lies in the narrative that the family has got the wrong child, a changeling for the nondisabled child who was expected. In such a case, the characteristic identified as disability becomes super salient, overwhelming the child’s other characteristics and totalizing the family as nondisabled and the child as disabled.”

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Rosemarie Garland-Thompson

I hate slogging through academic-ese to find interesting stuff like this, that could all be stated just as easily without the academic-ese. I wish we had disability studies journals that mandated, if not plain language, at least non-academic language. But then academics wouldn’t like it that much. Anyway, this quote is interesting to me because in my family disability is the norm not the exception, and people who were considered unusual in the family due to disability, it wasn’t because they were disabled, it was because of very specific things about them or their disability, it was… different than this. But this total isolation from the family is something I see often in other disabled people and in how parents talk about their disabled kids.

Notes: