"Up-Syndrome"

Referring to "Mom urges language to put kids first, disability second" (http://www.davisenterprise.com/articles/2007/10/05/news/093new2.txt)
While my older sister Becky was in middle school, she would often correct people: I have "up-syndrome", not "down-syndrome".
She didn't really see her genetic condition in a negative light, and ever the optimist, decided that "up fit her better than the negative connotation of "down".
I'm not sure she if she ever knew that Down syndrome (Down's syndrome in British English) is actually named for John Langdon Down, who recorded its symptoms in 1866, and not a dissenting opinion from society. Because of Becky's terminology, I did not figure that out till high school.

Becky's attitude toward Down syndrome was largely shaped by her experiences in pre-school and the local, public Monroe County School System. Each of my three older sisters and I had what is known as an i.e.p. -- Individualized education program. This allowed our family to alter the standard public school curricula to our personal needs. For Becky, that included making our own school 'full inclusion'. After starting late, Becky took most classes with 'children without disabilities', each year the i.e.p. meeting was approached by family and school system with a can-do mentality, and that had a positive effect.
This idea is shared with Christine Totah's "Peoples First Language", terms designed for use at Pioneer Elementary School in Davis, California. Pioneer was a 'full inclusion' school, but Totah took issue with that terminology. It almost implies there is another class of people to be included, raising the question, who is being included, and who is doing the including?
Totah found this offensive, and drafted a resolution to change the terms of discussing disability from language of being characterized by disability to language of being people having certain conditions. For example, "he's autistic" should rather be phrased 'he has autism'.

In general the concept makes sense. People should not define those with disabilities by their condition, but some of her terminology changes are questionable. Changing "s/he is a midget" to "s/he is of short stature" seems to be misleading; "of short stature" could also mean just being 6 inches shorter than everyone else, whereas midget implies a much larger height difference and a more specific condition. Is it just the tone in which it is said that could make 'midget' a negative term, or does it actually have negative connotations? (It seems to me "of short stature", may be some family's "up-syndrome".)

Some of her changes, however, were particularly insightful. She replaces the terms "normal, typical, healthy kids" with "children without disabilities".
I was going to type "everyone else" in the spot above where I put "children without disabilities", but this change got me thinking. Who is 'everyone else'? Why is my sister not one of them? Is she really that different? By taking away normal, and inclusion, Totah completely reframes the topic. People are not normal or different, but rather may or may not have certain conditions.

The language used in describing disability is very important. It changes how people are perceived, how families approach raising children with disabilities, and even how those with disabilities see themselves.

Totah's full list of language changes is outlined in the school board resolution (http://www2.dcn.org/orgs/pioneerpta/images/full_inclusion_resolution.pdf).