Sunday, September 16, 2012

Pervasive Parenting

As promised before I’ll share with you some of the things I’ve learned in my first class of Partners In Policymaking. There is so much, but I have my next three weeks worth of columns lined up already.

The first thing I want to share is People First Language. I’ve talked in the past about using the “R” word and how disrespectful it is. Though calling someone retarded should be a thing of the past it is still used in everyday language. However, I learned this weekend in class that this is not the only negative way to address someone with an intellectual, physical, or developmental disability.

When talking about our children with disabilities we tend to lead with things like, “My autistic son” or “My disabled child.” This may not seem like such a big deal, but it tends to label our children. We take away their true identity. After all, how do we want our children to be remembered? Aren’t we fighting for equality in our children, and then turning around and making sure that everyone knows they have an issue.

The Oklahoma People First website states: “Language is power. Our words have the power to inspire, motivate, and uplift people. They also have the power to hurt, isolate and oppress individuals or entire segments of society. Often times, throughout our history, it has become necessary to change our language and the way in which we refer to individuals and groups to avoid further oppressing those members of society. The time has come to reshape our language once again so that we may refer to people with disabilities and the disability community in a respectful and inclusive manner.”

The suggestion by our presenter Diana McCalment was to only use the disability if you need to. If you are just talking to someone about your child you can introduce then as, “Konner, my seven year old. He’s in the second grade. He loves Thomas the Train and making mud pies.” If you throw in the sentence, “He’s autistic,” it is unnecessary to the conversation. However, if you are talking about autism you might say, “My son Konner, who has autism.” Always put the person first – hence the name.

The principle is that the emphasis should be on people, not the disability. People with disabilities are still people. They have enough in the world to conquer without having to deal with labels.

Another example would be, if Jennifer was to tell people what she does she wouldn’t say, “I’m a special ed teacher.” She should say, “I teach children with learning disabilities,” or “intellectual disabilities,” or “developmental disabilities.”

When trying to use People First Language, some key terms and words to avoid, according to the OPF site, include:

  • Invalid
  • wheelchair-bound
  • mongoloid
  • deaf and dumb
  • defective
  • mute
  • crippled
  • special person
  • suffers from
  • handicapped
  • stricken with
  • a patient
  • retarded
  • afflicted with

Other suggestions taken from the site include:

  • Do not refer to a person’s disability unless it is relevant to the conversation.
  • Use the word "disability" rather than "handicap" to refer to a person’s disability. Never use "cripple/crippled" in any reference to a disability.
  • When referring to a person’s disability, use "People First Language."
  • Avoid referring to people with disabilities as "the disabled, the blind, the epileptics, the retarded." Descriptive terms should be used as adjectives, not as nouns.
  • Avoid negative or sensational descriptions of a person’s disability. Don’t say "suffers from, a victim of, or afflicted with." These portrayals elicit unwanted sympathy, or worse, pity toward individuals with disabilities. Respect and acceptance is what people with disabilities prefer.
  • Don’t use "normal" or "able-bodied" to describe people who do not have disabilities. It is better to say "people without disabilities," if necessary to make comparisons.

 

This all seems a little crazy at first, and some may call it political correctness. I call it humanely correct. What we are trying to do in this society, or should be as parents, is fight for equal rights. It is a civil rights issue. With the rapidly increasing diagnosis of children with autism the issue of rights is going to grow.

Think of it this way; our main goal as parents, or at least one of them, is to allow our children to live as “normally” as possible. This is why we fight to have them mainstreamed in the classroom, to have them participate with others in social activities, and why we just want them to be accepted by their peers.

One way to allow this to happen is to lead by example. If we are talking to someone, whether they are our children’s friends, other parents of children with intellectual disabilities, teachers, or just the woman next door, we should use People First Language. If they use incorrect terms we shouldn’t automatically correct them, this would only come off as offensive or rude. We should give them back the right answer. McCalment used this as an example (I’m paraphrasing): If a parent says, “My autistic child needs services,” you should come back with, “Oh, your son who has autism…” or “Your child with intellectual disabilities…” If you use this enough you will start a trend, so to speak.

Again, I know that this may seem a little over the top for some. Trust me, I feel this way a little. After all, it doesn’t bother me to hear that I have an autistic son, but then there were a lot of words used to describe African Americans that didn’t seem inappropriate prior to the 1960s. Even mental retardation wasn’t a bad phrase a decade or two ago. Now many of us hear that and cringe. Just something to think about.

For more information on People First Language you can visit the Oklahoma People First website and there is a link to the language at http://oklahomapeoplefirst.org/language.html.  They have some other suggestions of words to replace. Be pervasive and spread awareness.

Disclaimer: I am in no way claiming to be an expert. I’m just a father who is trying to learn as much about Autism as I can to help my child. I hope that you all can learn from me, and I from you. I ask anyone who has questions or comments about something I have written, or autism, please contact me at pervasiveparenting@hotmail.com. I will try to answer questions as I have time, and if I find it interesting enough I may touch on it in my column. You can also find all columns archived at blogspot.com.

 

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