I first read the following blog entry:http://phoebeholmes.com/2011/12/23/being-retarded/ a week ago when a friend posted it on her facebook page, a post which resulted in my friend being "jokingly" accused by her adult niece on facebook of simply being "overly politically correct." However, when I saw the blog post entry, I quickly cut and paste it to a disability forum page that I subscribe to, and also thanked my friend for the posting. A few days later, I noticed that on the forum page, the blog entry had started a bit of a running commentary, and the author of the blog entry was mildly under attack....for using too narrow a narrative of disability, and for using too many "nevers" to describe her disabled daughter's life. While I understand the reaction of those who want to change negative perceptions about persons with disabilities, I also understand what it is like to live with some of the "nevers, " that the blog mom describes. I'm starting to understand more and more the degree by which our perceptions of disabilities are insidiously affected by the world around us. And while the perceptions often have much less to do with the real possibilities for persons with disabilities than we think, as we know better today, we, like the disabled person, can be prisoners of society's narrow view. That is why we need to understand the power of a single word to either block or effect change...
I once spoke out in my work place asking people to stop using the word retarded as their description for just about everything you can think of from deliciously sweet ice cream someone was enjoying at lunch, to the inconvenience of an afternoon street closing for a high school parade. I announced one day, after being fed up with hearing it over and over, that the word was really offensive- One person actually responded by saying "It's just a joke," and then, rather defiantly, she asked me who is was it offending, anyway? As it wasn't, in her worldly opinion, offending anybody present. ( Apparently many people think if a "retarded" person is not in the room, then it's okay to use the word)... Stunned by her ignorance, I answered: "Well, me for starters." ....And that should have been enough right there and then, in my opinion, to make them all stop, but... - I guess people don't realize that beyond feeding into a narrative of disability that perpetuates devastatingly limited stereotypes with real consequences for persons with disabilities, by bandying around the word "retarded", there are also family members and friends of people with disabilities who really feel the pain and narrowness of that word. And friends and family are often the ones who are on the front lines in the battle to effect change....
I have a twin sister who has a cognitive disability- and there really are some "nevers" that apply to her cognitive skill level. She will for example, never drive a car, never live on her own, never get married, ... and although some of her "nevers" are the result of her cognitive skill level, part of what has limited her has been the way the world views her as a "retarded" person- Sweet as delicious ice cream and awkward and inconvenient as an afternoon parade road block-how dismissive! Yet if they knew my sister, they'd see she has a sense of humor and a temper like the rest of us, that she has feelings and needs, and wants and desires like every human being. Or if they took the time to hear about even a fraction of the battles my mother and father had to fight with the State to get the proper care for her over the course of 40 some years, or felt the pain we felt as children for being teased about her by other kids, the discomfort of rude stares, or perhaps if they experienced the worry for every time she was injured in State care but wasnt able to tell us who and how, or had been given the wrong medication with adverse affects, or if they realized how many ways her status as a " retarded" person forever changed our family dynamic, in both positive and negative ways, or if they ever sat with her for an afternoon, they'd realize she's more than an ice cream flavor and a silly parade.... she's our Mary Mac, who we love and who loves us back. She's my twin, the person I came into this world with...
I have a twin sister who has a cognitive disability- and there really are some "nevers" that apply to her cognitive skill level. She will for example, never drive a car, never live on her own, never get married, ... and although some of her "nevers" are the result of her cognitive skill level, part of what has limited her has been the way the world views her as a "retarded" person- Sweet as delicious ice cream and awkward and inconvenient as an afternoon parade road block-how dismissive! Yet if they knew my sister, they'd see she has a sense of humor and a temper like the rest of us, that she has feelings and needs, and wants and desires like every human being. Or if they took the time to hear about even a fraction of the battles my mother and father had to fight with the State to get the proper care for her over the course of 40 some years, or felt the pain we felt as children for being teased about her by other kids, the discomfort of rude stares, or perhaps if they experienced the worry for every time she was injured in State care but wasnt able to tell us who and how, or had been given the wrong medication with adverse affects, or if they realized how many ways her status as a " retarded" person forever changed our family dynamic, in both positive and negative ways, or if they ever sat with her for an afternoon, they'd realize she's more than an ice cream flavor and a silly parade.... she's our Mary Mac, who we love and who loves us back. She's my twin, the person I came into this world with...
It is not her disability that had dictated the quality of her life, it's the world's reaction to her disabiltiy that has created some of the limitations that are now "nevers" like the blog mom talks about. For sure, if the world Mary was born into 50 some years ago had a more open view of disabilities, there would be fewer "nevers" on her life list. It is with both gratitude and sadness, envy and delight that I welcome the positive changes that are now available for persons with disabilities- and these changes have come about because of friends and family members who advocate for change...the ones who speak out..the ones who take offense to indifference... and this is why a word, so seemingly insignificant to others, needs to be retired from the slang pool. It hurts us, and has such insidious and destructive power when it comes to the lives of persons with disabilities, and that my friends, should be more than enough to make us stop using it....
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