Tuesday, October 21, 2014

Talking About Down Syndrome

I think an important part of educating yourself about Down syndrome is understanding the appropriate way in which to talk about it. While I have found much improvement over the years, there is still confusion on just how to speak about it. As a mother with a daughter who has DS sometimes I am not even sure what is "acceptable" these days. My emphasis is not about being politically correct but rather showing respect to the person or people involved.

People First Language - The most important thing to do is to remember to use people first language, that means that you address the person before you speak about their condition. They are not a Down syndrome child. They are a child who has Down syndrome. This of course would be used for any diagnosis. A child has autism, they are not an autistic child, etc.

Individual Distinction - People who have Down syndrome are individual humans and stereotyping them by their diagnosis is no better than classifying people by race or gender. The most common misconception is that all people with Down syndrome are happy. Like any other human being, people with Down syndrome experience a huge range of emotions each and every day. Living with a teenage daughter who has DS I assure you that is true. Do not assume that you know everything about my daughter because you know another person with Down syndrome. That is like me saying I know all about you because I know another red head (or whatever your hair color may be)! It's wonderful if that means you are educated about the syndrome itself, just do not assume it means you know how my daughter will respond, act, or feel in any given situation. She is her own person.

The appropriate spelling is Down syndrome - I was one of the guilty ones. I used that apostrophe and I capitalized the S in syndrome. Down syndrome was named after John Langdon Down who was the first one to classify it as it's own condition. He did not, however, have Down syndrome himself as using an apostrophe might imply. A medical condition is not a name so syndrome is not capitalized. Down is capitalized because it is a name. As you will note, trisomy 21, the more technical term for Down syndrome is also not capitalized.

Avoid the R-Word - While the word retarded has its valid connotation, since that word has been hi-jacked to be used in a derogatory way, it is best to avoid using it at all. Even doctors and medical staff are encouraged to use terms such as intellectual disability rather than mental retardation. In any case, out of respect for people who have intellectual disabilities never use the word retarded to speak about someone or something as stupid. With all the awareness you would think people would have stopped using it, but they still do. The good news is that since even the medical staff no longer use the term I doubt my daughter would take offense because she would not make any connection of it to herself since no one has ever audibly used the word "retarded" when diagnosing her.

Speak to the person, not about them - We love talking about our children to others and sometimes we do it like they are not there because they are too young to understand what we are saying. However, as they grow up we stop doing that. Yet some people still do it around people who have intellectual disabilities, even if they are adults. Never speak about a person in front of them. Speak to them. Acknowledge their existence, include them in the conversation, and treat them as you would any other person of the same age. Do not treat an adult like a child and do not treat a child like a baby.

Don't show favoritism - Acceptance has come such a long way that my daughter has only had one incident in her twelve years of life where someone actually made fun of her in her presence. What she does get is lots of positive attention! While that is a great thing sometimes I fear it is too much. While I want you to accept and embrace my daughter, please do not ignore and over look every other child, especially if they are siblings. Siblings who have a brother or sister with a special need are often over looked. They are special too! If my daughter is always getting attention just because she has Down syndrome, that is almost as bad as getting no attention because she has it. Yes, she will sometimes need extra attention and diligent care, but not in a way that says she is better than everyone else. She is as good as they are, yes. But better? No.

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