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Yesterday, our Partners in Policymaking class met Kathie Snow, a “just a mom” convert who is now a nationally known speaker, writer and consultant on disabilities. Her website, Disability is Natural is a cornucopia of common sense information, resources and products on how to treat, communication with and communicate about persons with disabilities.
Kathie is definitely a rebel rouser. She shook up the room full of parents of children with disabilities quite a bit yesterday. Each of us was challenged to rethink the way we talk to and about our children and what labels and words we choose. And she’s got a point. Words are powerful. And apparently I feel this way too, as I ranted just last week about how much I hated school personnel referring to my CHILD as my STUDENT…and why I thought this language was dangerous.
Kathie challenged us to use People First Language, a concept that has been around for at least 15 years. The basic premise is that the person who HAS a disability should not be referred to AS the disability. Children with autism are not “autistic children” A man who is paralyzed and has paraplegia is not a “paraplegic”. A person with schizophrenia isn’t a “schizo”, and a child with Reactive Attachment Disorder is not a RAD kid. (Sorry folks, they just aren’t!)
Why is this important? Because labels stick, and they wound. And when a person’s diagnosis is placed in that adjective position before their name/noun…it becomes the defining descriptor of who they are. If I told you I was a myopic, astigmatic, allergic woman I would sound much more impaired, disabled, and less functional than if I told you that I have to wear glasses for my nearsightedness and slight astigmatism and sometimes take medication for seasonal allergies. See what I mean?
Plus the person is devalued, because we see the disability first. It also becomes a life-long label that is nearly impossible to shake. My younger sister has asthma. In a family of three girls, she was referred to as the “sick one” or the “asthmatic” all while we were growing up. If you met her today, you would not recognize any disability whatsoever (unless you fed her peanuts and she went into anaphylactic shock). But in the small town we are from, she is still “the sick one”. I’ve never asked her how this made her feel, but I can guess. Weak, dependent, devalued…for sure! Plus, a label like this gave her no chance to get better. For years her asthma and the related health problems have been well under control and her health needs have been met. But being the “sick one” implies a life-long debilitating condition.
The other problem with labels first and people second is the same problem we have in the adoption community labeling birthparents and adoptive parents – it segregates us. Figuring out what to call parents in the adoption triad (birth, real, natural, bio, adoptive, second, forever…) is problematic for this very reason.
There were several things that Kathie said that I am still digesting, and some which I will likely ultimately disagree. I’ll talk about these in upcoming blogs, mostly because I want your feedback, too. And to get you thinking…
Related Blogs
Radishes, BP, and Aspies – What’s In a Name?
Where Does the Fixing Start? Child Vs. Student
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I totally agree with her. I’ve been thinking about the same things over the years.
But it’s hard, especially when so-called “normal” folks view disabilities and the worse thing ever.
John Hockenberry comes to mind. He wrote a great article I read in a magazine years ago about this sort of thing.
I have other opinions about the matter, but I am afraid to offend, but a paradigm shift is needed for so many things and attitudes…
especially when it comes to kids making fun of kids for being different.
This is so true. I cringe when people constantly ask and talk about DS *problems* in front of him. Even if not in front of him, I want to just shout out that it is not what defines him–watch him jump and play and ask him to color.