Hallie Levine Sklar told her readers at Parents.com that she “cringes” when she hears the word retarded. She’s not the only one.
Prior to reading Hallie’s story, I was unaware that October is Down Syndrome Awareness Month. That’s not all that surprising considering that there is no one in my life right now with Down Syndrome. In general, we tend to focus on the awareness days and weeks and months that affect us the most. I’m sure most of you don’t know that the first Monday in May is Melanoma Monday. I do – because it hits home.
The thing is . . . this hits home too. Aside from a few kids in school or a young man I used to chat with at the bus stop, I really haven’t met many people with Down Syndrome. When I taught children with special needs, most of my students were diagnosed with Autism or a Learning Disability.
There is, however, a very special person in my life who had Down Syndrome. I was never fortunate enough to meet her. She’s my aunt. And my namesake.
In 1955, my grandmother was pregnant with her 3rd child. She was 19 years old. During her pregnancy, she read the book “Angel Unaware” by Dale Evans Rogers. The book was about Dale Evans and Roy Roger’s daughter, Robin, who had Down Syndrome. It is an incredible story and I recommend it to everyone.
Hallie wrote of her daughter in her Parents.com post, “Fifty years ago she would have been labeled as ‘mentally retarded’ and my husband and I would have been told to shunt her off to an institution.” That is exactly what Dale Evans and Roy Rogers were told, but they didn’t listen. They kept their beautiful daughter and loved her and cherished her.
My aunt was born on January 18, 1956. She had Down Syndrome.
My grandmother named her Dale, after Dale Evans, of course. I never talked to my grandmother about that time. We talked about Aunt Dale, but I never asked the questions that I would ask now because I had no idea what it was like in the 50’s to have a child with a disability. The idea that even one parent, much less almost all parents, would give up a child because of a disability was completely foreign to me.
My grandmother died when I was 13, so I’ve lost the opportunity to ask her about her experiences.
What I will say is that I have no doubt that she was told to institutionalize my aunt and the fact that she refused to do so (in 1956) fills me with an enormous amount of pride for a woman I already knew was incredibly brave and strong.
My mom did not have the opportunity to really get to know my Aunt Dale either. She was born on January 18, 1962 – my Aunt Dale’s 6th birthday. Four years later, my Aunt Dale died of pneumonia. Still, I grew up hearing all about my her.
Those stories . . . about how happy she was (I’ve never seen picture of her without a huge smile on her face), about how she lived her entire life as an infant – never learning to walk, talk or feed herself, about how my uncles would take her for walks in her carriage and defend her against the nasty comments from others . . . those stories, and perhaps our shared name, made me feel connected to her all of my life.
She is the reason I went to school to become a special education teacher. She gave me the heart and patience to work with children with special needs. She is one of my many angels.
So no, Hallie is not alone in her disgust with the derogatory use of the word “retarded”. I grew up lecturing everyone I could – not that many of them listened. I argued with classmates . . . other students working towards degrees in Special Education . . . when they would say something was “soooo retarded”. People rolled their eyes at me because they thought I was overreacting. Some would apologize and say they knew it was wrong . . . many would say it again the next day.
I would tell them about my Aunt Dale. I’d tell them how beautiful she was. I’d tell them how their words were an insult to her and every other person with a disability. Some cared, some feigned to care, some didn’t bother.
There’s a larger issue here. It’s an issue of human dignity and respect . . . the ability to step outside of ourselves for just a moment and consider how powerful our words can be . . . the understanding that we have a choice to use our words effectively for a positive purpose instead of a negative one.