Autism, Siblings and the R-Word Effect


Autism Siblings

Willie & Caroline

When we, the siblings of someone with special needs, hear the word “retarded” or “retard,” even in the most seemingly-casual context, it strikes us hard.

When we hear it, we hear it as an echo of all the times our brothers and sisters were not welcomed. It’s an echo of every rejection, overt or covert, of every uncomfortable moment when we felt that we had to somehow explain or justify our siblings’ very existence. It reminds us of every time we couldn’t find the words to say that, in our moments of clarity, we see autism as a unique part of who they are.

The r-word is a jeer, a mockery and an attempt to draw an ever-more-pronounced line between those who are considered neurotypical and those who are not. 

It doesn’t matter who says it – a dear friend or a stranger passing by on the street. Regardless of the speaker, the effect is the same: a feeling of uneasiness and hurt. As discussed in a recent article, the r-word is alive and well and we, the siblings (as well as parents, caregivers, friends and loved ones), are wounded every time we hear it. 

Sometimes, we swallow our anger and turn away. Sometimes, we ignore it, pretending it doesn’t matter. But every time we do this, we feel we have betrayed the person we love (and we have).

Other times, we are given the grace and courage to speak up and take a stand. In those times, we say in as calm a voice as we can manage, “Please don’t say that word. It’s offensive.” And more often than not, we get strange looks, or forced, unfeeling apologies. We may get derided for “making a big deal out of nothing.” On rare occasions, the request may be received with appreciation, and a true apology ensues.

Yet, regardless of the response, we must keep speaking up. We may feel insecure in doing so, but our love must be greater than our fear. As Martin Luther King Jr. once said, “A time comes when silence is betrayal.” Not speaking up when we hear the r-word is one of those times.

If you were to tell me that my brother is retarded because he has autism, here’s what I would say:

“Please don’t say that word. Language shapes thought and when you say that another person is retarded, you’re judging them as inferior. You’re saying that they are not worthy of being treated with dignity and respect. You’re treating them as though they are less than you, and in doing so, you expose a deep-seated ignorance and bias.

My brother’s gifts are different than yours, not less-than. My brother’s life may be different than yours, but again, not less-than. I would like to welcome you to a world of diversity, where deviating from normal isn’t a bad thing. I would like to let you know that there’s challenge in that world, but there is also joy.

If you call my brother (or anyone else) retarded, you’re being hurtful to them, and to those who love them. But on a deeper level, you’re also rejecting yourself. You’re rejecting the parts of yourself that need patience, acceptance and love. You’re covering up your own vulnerability by mocking the supposed weakness of another."

On March 7, 2012 , "Spread the Word to End the Word" will be holding its “annual day of activation” to help further raise awareness and educate others about this issue. Consider taking part in this event and let others know that each time individuals use the r-word, it can have a profound impact on others. And when they do, we all lose out.

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About the Author
Caroline McGraw
Caroline McGraw is a would-be childhood paleontologist turned storyteller, digging for treasure in people with autism & intellectual disabilities (& empowering caregivers to do the same). Her younger brother, Willie, has autism, and she writes about finding meaning in your most challenging relationships at A Wish Come Clear. Her first book, Your Creed of Care: How To Dig For Treasure In People (Without Getting Buried Alive) is a guide for caregivers, free to all who elect to receive posts via email at: http://awishcomeclear.com

12 Responses to Autism, Siblings and the R-Word Effect

  1. Lydia Brown says:

    When we, adults with disabilities, hear the r-word, it strikes us hard too. It is not only family members of people with disabilities who are (rightfully) upset by the use of this word. I would contend that it is most insulting to those of us with disabilities. I am Autistic, and I constantly remind people around me that that word is not acceptable or okay to use. That kind of language has been historically used to dehumanize people with developmental and intellectual disabilities, and I will never accept its casual use as a joke or an insult. Hearing or reading that word can be very badly triggering for many Autistic adults. (I often insert trigger warnings in front of my own blog posts for various reasons, and always when that word is used or quoted.)

  2. Kevin says:

    The problem is that a large percentage of the Americas are border line illiterate and subsequently they are unaware of the true meaning of the words used, to be retarded, as I’m sure you know, the word is derived from the italian word ritard meaning slow, it is the ignorance of People that causes the use of the word to become objectionable. The Political correctnes at the moment is poised to get beyond common sense, at some time in the future we will have to make an in depth analysis of the individual we meet before even daring to enter any social intercourse for fear we may cause upset or embarassment. Fat is objectionable but metabolically challenged is ok… it’s the same thing ! People are over sensitive these days, those casting aspersions on people less well off, socially, intellectually or physically than themselves are, in itself, sub-standard and deserving of a title.

    Should the whole Dictionary have perceived overtones of negativity removed?

    Bald is a lack of Hair, something that I have been for many years, it is a lack of Hair, not Life threatening but when it suits, when some one wants to be hurtful, it can be used to hurt but I cannot expect people to delete the word “bald” because a small section of society chooses to use words as weapons. I am sorry people have chosen to use the wrong words to subject you to sadness and upset but where will it all end .

  3. Paige M. says:

    My little sister has autism, and a lot of times at school when people say the r-word, and I want to go up to them and say lots of stuff, but I know I have to remain calm and so it will be a sense of graditude towards my little sister. I hope that if we all work hard together, we can put an end to the r-word once and for all.

  4. Kassiane says:

    It effects me more than it effects my siblings. I am autistic. Don’t exclude us from the conversation by saying it only effects family, caretakers, friends.

    I wrote this about the same subject, the R word:
    http://timetolisten.blogspot.com/2011/10/just-dont-use-that-word.html

  5. Katja says:

    My 12 year old daughter, who has one brother who is has multiple handicaps and at 16 years old functions at the level of a three year old, and another brother who has Aspergers (mild case), stops any kids at her school using the r word whenever she hears them use it. She explains that it is demeaning, hurtful and rude. She has had a definite impact at her school, the kids have listened and you don’t hear the r word very much anymore. She is also not afraid to stop bullying behavior when she sees it. I am so proud of her!

  6. Dawn says:

    Normally, I don’t spend a lot of time commenting on blogs…but, this time I am making an exception. I must reply, especially to Kevin who commented earlier. Let me preface my response with saying that I have worked with the special needs community for over two decades of my life. I have volunteered, been an advocate, taught in the public school system, and am currently a special education consultant. I also had an aunt that was developmentally disabled, and a grandson who was diagnosed with autism.

    I have been a crusader for years, of stopping the use of the word “retard” or “you’re so retarded!” I am tired of people using those words to say, in essence, a person is stupid or slow. It is used as a put down. Now, I would no more call someone a “retard” than I would use a racial slur. A person cannot choose his/her race and a person who truly has mental retardation did not choose his/her diagnosis or condition. To describe them as a “retard” is hurtful and demeaning. BTW Kevin, calling someone a retard is not descriptive like saying a man is bald (your example). Most people don’t go around yelling in frustration, “Wow! You’re such a bald guy!”

    Anyone that knows me, knows that I get sick and tired of politically correct mumbo jumbo. To me, this is not about whether or not someone is being PC, as you implied in your comment. This is about standing up for what is right and treating others with dignity, no matter whether they have a disability or not.

    You said, “Should the whole Dictionary have perceived overtones of negativity removed?”—No. That is ridiculous. But, you know what? We can try and be less ignorant and more kind.

    I think you attempted to put your own spin on what Caroline was trying to say. I applaud her for the post she wrote. She obviously loves her brother and is just asking for others to THINK before they spew out words that can hurt. I for one think she did a good thing.

  7. Deanna says:

    Well said Dawn. Kevin’s bald analogy is a weak attempt to conflate two very different set of examples. He didn’t mention but I highly doubt he has a loved one with a intellectual or mental disability, otherwise he would be more sensitive to this cause. As the mother of a moderately to severe autistic child, I take issue with his marginalization of this issue. I’ll be the first to speak out when political correctness runs amuck but the fact is the word is hurtful to too many people and for that reason alone, it should be phased out of our vocabulary.

  8. As a sibling of a person with a disability, I related to this post in SO MANY WAYS. For my part, I have stopped telling people that the R-word is offensive. As others have pointed out, many many words could (and are) viewed as “offensive” — a term closely associated with political correctness backlash. We know that the R-word IS offensive, but that’s not actually the reason why people shouldn’t use it — it’s because people who have disabilities don’t use that word to identify themselves. Plain and simple. If a whole group of people make a point of saying that they don’t want to be called by a certain term, and that the term belittles them as human beings, it’s incumbent upon all of us to take them at their word and stop saying it. Discussions about what is or is not “offensive” or accurate or anything else are totally beside the point.

  9. Frank says:

    Hatred towards of autistic people is sadly still alive. For example, Karolyn Kovtun, aka Karolyn E. Kovtun, a criminal defense attorney in San Diego County, recently called the autistic victim represented by Prosecutors, ” a retard.” Specifically, in attempting to justify her client’s abuse of the autistic person, Kovtun stated, “My client is a saint for having to put up with that retard.” Yes, discrimination of autistic people still occurs, but when you hear it coming from an attorney who is supposed to have professional conduct and instead insults the crime victim because they are disabled, we know we have a long, long way to go in the fight against discrimination of autistic people.

  10. Lydia Brown says:

    Frank, do you know what case this was? Either the defendant or victim’s names? Is there any news coverage of this case? Please let me know — thanks!

  11. Frank says:

    you can find it by googling caregivers caught on tape abusing autistic man

  12. ASDgramps says:

    Caregiver caught on tape abusing autistic man 66 times, gets of lightly

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