Public awareness

Since our prenatal diagnosis, I have realized that people (myself included) aren’t familiar with the correct way to talk about people with a disability. We all know the ‘R word’ is not an acceptable way to describe anybody, even though it was once accepted in the medical field as proper terminology (and some old school doctors may still use it). Sadly, that word has been used by a generation of children and adults oftentimes to describe themselves when they’ve acted silly or made a mistake. I am guilty of using that word in that context in the past. Now, given the fact that we have a child whom this word once described, I find that word offensive and repulsive. It hurts my heart when I hear someone say it. Please remember that words do hurt, and many times you don’t know who you may be offending with those words.

A common term I’ve heard since starting this journey is “people first language”. That is the accepted way of describing someone with a disability. Put the person before the disability. For example; We are having a baby with Down syndrome, not a Down syndrome baby. Because I was unaware of this prior to our Eli’s diagnosis, I am sure many of you are as well. Here is something I found from the National Down Syndrome Congress website (www.ndsccenter.org) that I thought may be helpful:

LANGUAGE GUIDELINES

The correct name of this diagnosis is Down syndrome. There is no apostrophe (Down). The “s” in syndrome is not capitalized (syndrome).
An individual with Down syndrome is an individual first and foremost. The emphasis should be on the person, not the disability. A person with Down syndrome has many other qualities and attributes that can be used to describe them.
Encourage people to use people-first language. “The person with Down syndrome”, not “the Down syndrome person.” A person with Down syndrome is not “a Downs”.
Words can create barriers. Recognize that a child is “a child with Down syndrome,” or that an adult is “an adult with Down syndrome.” Children with Down syndrome grow into adults with Down syndrome; they do not remain eternal children. Adults enjoy activities and companionship with other adults.
It is important to use the correct terminology. A person “has” Down syndrome, rather than “suffers from,” “is a victim of,” “is diseased with” or “afflicted by.”
Each person has his/her own unique strengths, capabilities and talents. Try not to use the clichés that are so common when describing an individual with Down syndrome. To assume all people have the same characteristics or abilities is demeaning. Also, it reinforces the stereotype that “all people with Down syndrome are the same.”

Here are some basic guidelines for using People First Language:

Put people first, not their disability
•A “person with a disability”, not a “disabled person”
•A “child with autism”, not an “autistic child”
Use emotionally neutral expressions
•A person “with” cerebral palsy, not “afflicted with” cerebral palsy
•An individual who had a stroke, not a stroke “victim”
•A person “has” Down syndrome, not “suffers from” Down syndrome
Emphasize abilities, not limitations
•A person “uses a wheelchair”, not “wheelchair-bound”
•A child “receives special education services”, not “in special ed”
Adopt preferred language
•A “cognitive disability” or “intellectual disability” is preferred over “mentally retarded”
•“Typically developing” or “typical” is preferred over “normal”
•“Accessible” parking space or hotel room is preferred over “handicapped”

Please don’t worry if you’ve used the “wrong word” or terminology around me. As I stated before, I am guilty of this as well. I am just grateful to know now and am hoping you will be too. I will be an advocate for my sons so that hopefully they won’t be subjected to hurtful words in the future.

Please don’t make me cry!

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2 comments on “Public awareness

  1. I knew you would be a great advocate and educator. See you have taught me and others an immense lesson today. THANK YOU!!

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