That Which Goes Unseen

What is seen of a person may only be a small fragment of their lives, and yet others are often eager to judge the whole of a life based on that small fragment. An autistic person (or any person) who may appear one way in one context, may not really be that way in another context. Being skilled with, for example, marketing, does not mean one is equally skilled at something else like math or housekeeping. This is particularly true for those of us who have extremely uneven or unconventional skills. And mistaking the piece of the picture for the whole of the picture can, for some of us, lead to catastrophic results.

You Have It So Good is a seminal essay on the issue of being judged "so high functioning" based on assumptions drawn from a small number of publicly seen items (e.g., driving) while at the same time having survival-level concerns (eating) go so unaddressed that one's life ends up in danger (starvation).

From Shapiro's No Pity in a section on T.J. Monroe,

The public Monroe is the confident and effective activist who gets invited to the White House and is a commanding presence running the People First convention.

Monroe's private life is more troubled. There are bills past due, an unkept apartment, a gnawing loneliness over scarce friends and lost family. Megan wrote of social workers from Connecticut's Department of Mental Retardation visiting Monroe's Hartford home to "dig him out" of trash and piles of mail scattered around his three-room apartment.

This is not about pity. It is about a critical misunderstanding of the needs and abilities of developmentally disabled individuals who achieve socially or culturally recognized competency in some publicly visible way.

This is also not about hurt feelings. It is about the critical issue of how a faulty assumption of ability can lead a person to be denied services or supports they need to survive.

As stated in You Have It So Good, giving up everything in order to get necessary support is not an acceptable option. No one should be forced to sacrifice their life, their health, and everything they have achieved or could achieve in order to get relatively simple survival level support.

Take care next time you hear someone say, "that person can't have real problems; they are too good at ______ for a person with real problems."

There may be a lot that goes unseen.