Virginia Commonwealth University
May 23, 2011
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Mary Tobin, M.Ed.

Did you realize the largest minority group in the United States is people with disabilities? And if you think about it, it’s inclusive. It doesn’t matter what gender, race or socioeconomic status you come from, you can be a member. AND you can join at anytime, whether at birth or later in life (Snow, 2010).

Young girl

See the child first. Person-first language is a philosophy of putting individuals before their disability.

Here is a scenario to examine your assumptions about people with disabilities. You are at the grocery store and a woman in a wheelchair passes you in the aisle. Do you make any assumptions about why she needs to use a wheelchair? Do you see the women or her wheelchair? If your preschool child asks you “What’s wrong with that lady?” what do you tell her? When you refer to a person who has autism, what comes first: the individual or the diagnosis? Do you say “my autistic nephew” or “my nephew has autism?” This is important because the way we speak or write about someone greatly influences the images and attitudes we form about them, leaving behind a positive or negative impression for others (Blaska, 1990).

Person-first language is a philosophy of putting individuals before their disability. As you will see, this is about more than just language; it goes deeper into our attitudes toward others and how those attitudes translate into action. The label or identification that one’s condition or disability receives from a doctor is just that: a label. It is a way of broadly characterizing a group of symptoms under a recognizable and universal description so that treatment and services can be provided. It doesn’t speak to a person’s value or abilities. However, historically those with disabilities have been characterized as broken or frail, which makes it easy to see the impact language has on how accepted individuals are in their communities. Society at large has used these labels as a way of marginalizing others’ potential and fitting them into a neat little box from which they will never break free (Snow, 2010).

In today’s world, our reality is media-driven. The images and words used to describe others can be very powerful and influential. “The press can have an enormous impact on society’s knowledge, attitudes, and public policies regarding individuals with disabilities” (Blaska,1990, p. 26). This type and level of influence becomes even more important when we consider how impressionable our youngest members of society are. Children form attitudes and opinions based on what they hear and read. When the adults around them use words like retarded, handicapped or disabled in conversation, it reinforces their place in language and attitudes for the next generation (Blaska, 1990).

Clearly, when we start by focusing our attention on what people cannot do, we never make room for what they might do. By putting the person last, this is what is being done. It is this attitude that frames how our society views people with a variety of medical diagnoses, identifications or disabilities. We assume they will never do for themselves, so how can they ever be a productive member of society? That being said, there are disability communities that would argue that their disabilities define who they are and that is okay. It is, however, one thing to make that determination for yourself and another to have others do it for you. As teachers, families, therapists and administrators, we are where it begins. This is the power we hold in this battle. When talking about our students, it is only appropriate and respectful to use person-first language and to assume competence. This is another way children and young adults get the message. Our words, like the media, set the example for children and young adults.

Imagine how much easier it would be to start a trend of using person-first language if the press took up the cause and started putting people before their diagnosis. It would be refreshing to listen to or read a story about autism and have the reporter use person-first language instead of referring to a child as autistic or go to the movies or watch a television show and not hear “retarded” used. The only way this attitude toward others will change is if we begin with ourselves. Then we must expect the same level of respect from our family and friends and from our educators, community and on and on until it becomes taboo not to put individuals first.

References

Blaska, J. (1990) The power of language: Speak and write using “person first”. Retrieved on March 3, 2011 from www.uaa.alaska.edu/dss/information/upload/PeopleFirstLanguage.PDF

Snow, K. (2010) To ensure inclusion, freedom, and respect for all, it’s time to embrace people first language. Retrieved on March 3, 2011 from www.disabilityisnatural.com.

The “R” Word by Megan Blake

“Oh my gosh, that sounds so RETARDED!”

My heart leaps into my throat. Did she really just say that? My dear friend? The one who came to my baby shower after my daughter Katie was born in 2006 (and diagnosed with Down syndrome) and held her tenderly and hugged me tight as I reeled from the news of my baby’s extra chromosome?

“I felt like such a RETARD!’”

This time it’s a family member telling a story at a holiday party. Everyone laughs except me, and I can feel my heart pounding and my stomach clenching. It’s not appropriate for me to spoil the mood by crying foul, and I feel sick to my stomach.

“You’re so RETARDED!”

The teenage clerk at the store teases her co-worker playfully as I stand there with Katie in my arms. Katie’s smiling and waving at the other customers, giggling when they wave back, snuggling sweetly into my neck. Can my daughter sense my distress?

The “‘R’ Word” is everywhere. I hear it all the time, and I’m sure you do, too. It’s become the catch-all put-down, the ultimate insult. It’s said in movies, on the radio, on the playground, on Facebook and even in the White House. The problem is, it’s so ingrained in our culture, people use it without thinking about the real hurt it inflicts.

I struggle with how to respond when somebody uses the word around me. Typically, I find myself saying something along the lines of, “Hmmm, maybe you could use another word, like ‘ridiculous?’” Sometimes that’s not enough. … I get blank stares, so I’m forced to continue. “When you use the word ‘retard,’ it hurts me and it hurts Katie.” And then people get flustered and say, “But I wasn’t talking about Katie!” Well, no, not directly. But when you say the word, when you throw it out there in the universe, you ultimately hurt Katie and all people with cognitive disabilities. Use of the word, in its own small way, breeds intolerance and forms a toxic atmosphere around us. Katie may not understand the implications of the word now, but when she goes to school in a few years, she will. The “R” Word separates her from her peers. It tells everyone that she and people like her are inferior, unworthy, easily dismissed.

Now if you knew my daughter, you’d understand that she is not in any way inferior, unworthy or easily dismissed. Katie is a bright shining ray of light. Her eyes sparkle with happiness, her frequent laughter is infectious and she has the ability to wrap an entire room of people around her little finger in one minute flat. She attends a regular preschool where she sings and dances and paints and plays and has lots of friends. She plays and wrestles and snuggles with her big brother, Will, like any other little sister would. Katie is a blessing to our family and has brought intense joy to our lives in a way we could never have imagined in the beginning of this journey with her. We have many, many friends in the Down syndrome community who feel just as passionately about their own children. We consider our “chromosomally enhanced” children to be amazing gifts.

So my request is simple. If the “R” Word is in your vocabulary, please remove it. If you hear your kids use the word, explain to them how hurtful it is. If you’d like to go a step further, go to the Special Olympics campaign “Spread the Word to End the Word” website, www.r-word.org, and sign the pledge to show your support.

I thank you, and so does Katie!

Megan Blake taught elementary school before becoming a stay-at-home mom with her kids Will (6) and Katie (4). She is an active Down syndrome advocate, currently serving on the board of directors for the Down Syndrome Association of Greater Richmond (DSAGR). She founded and chairs the DSAGR’s First Call outreach program for new parents whose babies have received a pre- or post-natal diagnosis of Down syndrome. She has graciously given us permission to share an article to offer some insight on a parent’s perspective.

 

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