Long before my daughter (born with Down syndrome) came into my life, I knew - I knew it was wrong to use the word Retard (the "R" word) because I am a thinking, feeling human Being. That is not to say I've never used it. I have. I'm guilty too. I am human and I've made plenty of mistakes, but I can learn. Back then, using the "R" word was not PC, not nice and it did not really affect me. But, I made the decision to stop using it and then not too much later Sophia was born. Now the use of the "R" word is more than just not PC, not nice and you can be darn sure it affects me.
Unbelievably there are those in my life that do not understand my passion to educate others on why misusing the "R" word IS IMPORTANT. People who know and love Sophia and who (at least in my presence) do not misuse the word. "It's just a word," they say. "It's everywhere in our society and culture. Don't get worked up about it." "It doesn't mean anything." "It doesn't have anything to do with Sophia." And then there are people who have loved ones with an intellectual disability that have no problem with the "R" word or jokes about short buses. Folks, I just don't get it. I think, in my little world, that maybe, just maybe a redefinition of the word Retard is in order.
Let's start with a look at the classical definition of retardation. To provide distance from pejorative terms such as imbecile, moron, and idiot, -mental retardation (often shortened to MR) has, in recent history, been the terminology most often used in the medical and educational communities. Merriam-Webster definition:
an abnormal slowness of thought or action; a: less than normal intellectual competence usually characterized by an IQ of less than 70 b: slowness in development or progress.
Mental retardation is defined as: subaverage intellectual ability equivalent to or less than an IQ of 70 that is accompanied by significant deficits in abilities (as in communication or self-care) necessary for independent daily functioning, is present from birth or infancy, and is manifested especially by delayed or abnormal development, by learning difficulties, and by problems in social adjustment.
It is because of the misuse of the "R" word that today intellectual disability and cognitive disability are being used more and more. So, what do I mean when I say misuse of the "R" word? It's not necessarily that the popular culture definition is any different then Webster's. In fact, (in my opinion) the popular culture version includes the definition above. Then, it goes a bit further.
Re-tard n. (redefined):
a person with mental retardation, who may have a different or abnormal; physical appearance, manner of speaking, walking, or ability to do any activity that a 'normal person' is able to do. Such persons may be born this way due to Down syndrome, cerebral palsy or have other health related etiology such as autism. Other Retards may be eccentric or just nonconformist. A Retard may be born this way or become retarded due to accident, illness or drug abuse. A person deemed to be retarded has subvalue, that it to say they are less than worthless (without worth). Retarded people are often seen as disgusting, drains on society, or at best should be pitied. They are often ignored, abused (directly and indirectly), and terminated before birth --with the approval and encouragement of society and promotion of Hollywood.
Insulting another person by calling them retarded is immediately recognized as a descriptive term encompassing all of the above and is decidedly Not something any 'normal' person would want to be which has lead to its popularity as an insult used by children and adults alike. To describe a frustrating situation or a strange or defective object as retarded is also socially acceptable and immediately understood. Further misuse of the "R" word has coined the term Celebutard, or a person with celebrity (often an actor, athlete, reality tv personality, or socialite) who is in the public eye for consistently behaving in a way that is seen as dumb or stupid.
Have I changed anyone's minds yet? Do you now understand that the pop culture use of the "R" word is a statement of value? Regardless of whether or not people are consciously thinking of my daughter Sophia or anyone else that has an intellectual disability when they use this word (or stand by saying nothing when they hear others use it) it IS EXACTLY my daughter that they are speaking of. That line of thought is akin to believing that using the offensive "N" word has nothing to do with people of African descent.
My daughter is just 1 year old and is not yet able to understand what this is all about. I, as her mother and biggest fan, have a responsibility and a passion to do something about this now. To eradicate the misuse of the "R" word by the time she can understand its full meaning is not out of reach. You can help. Start by taking the "Sophie Challenge" that we introduced last October in honor of the Buddy Walk in which I asked everyone I knew to STOP misusing the "R" word. Go further to educate anyone that you hear misusing it. Do it because it doesn't cost you a thing but can effect change in such a big way. Do it because you love Sophie. Do it because you or someone that you love could be in a car accident today or contract an illness that could cause you to to have the MR label.
Still unconvinced? OK, so maybe my definition makes sense, but does it really hurt anyone? Should we all just get over it, roll over and accept it because its just too wide spread? I'd like to send you to 2 stories. The first is about a courageous young man, Soeren Palumbo, who has a sister with an intellectual disability. I look at him and I see Alexander's future. Click here to watch how the misuse of the "R" word affects him. As the audio is hard to hear, a transcript can be found here. Or how about the story of how a teen girl with Down syndrome overhears a group of teens insulting each other with the "R" word here?
Lastly, it is often wrongly believed that all people with Ds or other diagnosis are always happy, loving, simple people who are incapable of defending themselves. Trust me, just like anyone else, my daughter can be whiny, demanding and impatient. She has a full personality and shows a wide range of emotions. It will not surprise me if someday she scores higher than 70 on an IQ test as there ARE people with Ds who have an IQ within 'normal' range. (Not that I put that much stock in IQ tests and certainly NOT that a higher score would change my pride and love for my daughter). Do not make the mistake of putting this little firecracker in a box. It is my greatest hope that she will grow up to be a self advocate like Jessica Green. Her latest post on her blog is about standing up to a room of doctors. Jessica, you are my hero.
Have I offended? Probably. Gone too far? Not far enough I think. Speak up even if your voice is shaking.