As many know, last week I attended IHRSA. I will write more about the conference later but for now I want to focus on a comment that made me think again about the terms used in referring to individuals with intellectual disabilities, a constant focus for many in the special needs community.
I will not set the scene or exactly explain the context of the conversation, but the comment was made that “we don’t have ‘those kind of people'” (referring to individuals with intellectual disabilities). Initially my heart sank as my first thought was to cover Jeremy and his parent’s ears as if I was the protective parent. I looked over to see their reaction and saw nothing but big smiles and reassuring nodding. It was a reassuring nod that was saying “this is exactly why we are here.”
The big campaign these days is to end the use of the R word. To be completely honest I have mixed feelings about it. I 100% support the efforts of the campaign but the reality is that there are tons of words and phrases we probably need to put an end to and, to some extent, the more we focus on those words alone, the more ammunition we give to people to use them in a derogatory way: tell us we can’t do something or not to say something and we want to say and/or do it more. We are given confirmation as to what will make another mad and have now confirmed a weak spot.
Kelle Hampton gives a great description from a parents perspective on the use of the R word. I think it’s important to note, as she mentions, the definition of retardation: the act or result of delaying. For a long time, mental retardation was a medical term used to describe intellectual disabilities. Now it has been destroyed and now yes, we need to re-educate as many simply are not aware of the proper terms to use. But will intellectual disabilities eventually be used and abused or autistic? Will we start a campaign to end the A-word? What if we start hearing that is so autistic or you are acting so autistic?
I think everyone will have slightly different opinions on all the above. I cringed when I heard “those kind of people” and I don’t really like the word “disabilities” (but I use it all the time). Others can’t stand the use of the R word. Jeremy’s family does not like to use the word Down because of the direction of the word alone. So what is PC? How do we refer to individuals who are special?
1) We ID them. We are all INDIVIDUALS first. Then use a word to DESCRIBE or DEFINE (ie. individual with Autism). I think this is most important for parents, caregivers and professionals who work with individuals with special needs. We are the only ones who really need to know their exact “label” for treatment purposes. Many would argue this but I think most important for the general population is #2…
2) Learn their name. Expose yourself. Get to know the individual. I am often asked what is the right thing to say or how to act. Many are very cautious, uneasy and almost scared to be around individuals or their parents for fear of saying the wrong thing. You can’t go wrong with “Hi, my name is ______, what is yours? ”
Those kind of people can refer to all of us in some way; almost all of us have used the term retarded mostly without a thought about how offensive it is to others; and we all use the word disability, but as we strive to focus on ABILITY this term may disappear as well. I think, in general, we spend too much time focusing on what the right term or label is and not enough time getting to know them.
I think if I were to start a campaign, it would be something along the lines of “lose the label, learn a name.” Introduce yourself, expose yourself, get to know someone and the use of a correct term or label becomes less and less important…