This is a post in the weekly Autism Hopes series by Lisa Quinones-Fontanez, a mom who blogs over at AutismWonderland.
Before we became parents, my husband, Joseph, and I had a pretty active social life. We went out to the movies, went out for dinner with friends, went to parties, we entertained.
During my pregnancy and after Norrin was born, our social life dwindled down a bit. (I honestly cannot remember the last movie I saw.)
After Norrin was diagnosed with autism, our social life practically became obsolete. It pretty much consists of therapists and appointments. And as our lives changed, so did our friendships. Some ended while others got stronger.
Be Aware. Autism Awareness is a two way street. Become familiar with the diagnosis (at least the basics) and common terminology. Your friend will need you more than ever and if you have an understanding of the disability—that will make them feel less alone.
If you have “typical” kids, take the time to explain autism to them. It would be great if you could schedule a play date. Especially if your child is a year or two older—the older child can act as a role model for the younger one.
Be Understanding. Those first few months after a diagnosis, your friend may be distant or distracted. There may be times when they’re just not available. They may not pick up the phone when you call. It’s not that they don’t care about you—they may just be too overwhelmed to talk.
Understand that it will be hard for them to commit to plans. Childcare will always be an issue. Understand that they may need to cancel plans at the last minute. It’s not that they don’t want to spend time with you; it may just be a bad time. Keep extending invitations—they will be there when they can. You can always offer to come over with a bottle of wine and chocolate cake. I bet they’d really like that.
Just Listen. There will be times when your friend needs to talk, vent or complain. They may need to cry. Let them. You don’t have to say anything. It’s okay if you don’t offer advice (especially if you don’t have a kid with an autism diagnosis). Just let them talk and get it all out.
But don’t let autism rule the conversation. Try to talk about things that will make them laugh. Your friend will want to know about you too, she/he may be too preoccupied to ask.
Make An Effort. Make an effort to understand their kid’s speech or gestures. Make the effort to get to know their kid. Ask questions. Take a genuine interest. Ask if you can sit in on a therapy session to have a better understanding of what it takes to parent a child with autism. If you have children, volunteer your child to participate in the session. I know our therapists love when “typical” kids join the session—it makes for great social interaction.
Offer To Help. There are many things about an autism parent you may not know. One thing you need to know about autism parents is that they rarely ask for help. At least I know I don’t. Maybe you do want to help and are just waiting for your friend to ask. If your friend is anything like me, they will not ask.
Instead of waiting to be asked, take the initiative. Ask “How can I help you?” or “What can I do to help?” If you pose the question in those terms, they just may take you up on the offer.
Parents like me have repeatedly spoken out against the word, most recently this mom of a child with intellectual disability and this dad of a boy with Down syndrome. The word “retarded” has become a slur that means “stupid” and “loser.” The term “mental retardation” itself has been banned by Congress from federal laws, and will be replaced in the upcoming Diagnostic and Statistical Manual of Mental Disorders with “Intellectual Development Disorder.”
Whether you’re laughing calling someone a “retard” or saying a person has a diagnosis of “mental retardation,” the bottom line is the same: the words are demeaning to people with intellectual disability. They perpetuate the idea that people with ID are stupid. Period.
So why is it that parents of kids with disabilities still insist on using this term?
“I don’t have a problem with ‘mental retardation.’ To me, it’s simply a medical term that has been inappropriately appropriated by mean-spirited people.”
“I have a family member with Down syndrome, and we have always used the term ‘mentally retarded’ in the most clinical, descriptive way. I’m very used to it and comfortable with it used as such.”
“My daughter has been diagnosed with moderate mental retardation. I have no qualms about using the words ‘moderate mental retardation’…it’s what she is.”
I get distraught when the word “retarded” is unthinkingly used. But when parents of kids with special needs insist on using it, I am also completely baffled.
Why? I ask. Why?
Just use another word or term that doesn’t offend kids and adults with disabilities, and distress those of us who love them.
As one mom said, “I can’t get over the pain in my heart when I hear the words ‘mentally retarded.’ We could talk all day about how it’s a clinical, technical term but the fact is, it’s become a phrase commonly used to hurt people and it means something else, other than just clinical, to the rest of the world.”
Countless times a day, maybe even at this very second, someone is arguing with another person about the word “retard.” One person is saying something like, “That word’s offensive!” The other person is saying something like, “I’m not speaking about people with disabilities! I can use whatever word I want!”
This is what I know from the defensive and even hostile comments I’ve gotten when I’ve spoken out against the word. It’s what I hear from friends who care. A wise and wonderful woman I know, Marjorie Ingall, recently told me of a conversation with an acquaintance who’d used the word “retard” around her. Margie pointed out that using a term that refers to a physical disability is a “sweeping” insult to a person with a disability and his/her family. The woman’s responded that she’d never actually use the word to taunt a person with disabilities, but she saw nothing wrong with using it to describe stupid people and things.
In her mind, she saw these as two separate things.
In many people’s minds, there is no difference. When you refer to stuff as “retarded,” you insult people with intellectual disabilities because you equate them with stupidity. And yet, so many people cling to the word, as if it is their Favorite Word In The Whole Wide World. As if there are no other words to use.
As Margie says, “I grew up saying retard. I have slipped and used it as an adult. It IS an effort. But intellectually I know that it is HURTFUL to say, and being able to shut up and come up with another word is what makes us higher than the animals! If someone is really hurt by a word you use, there are excellent words that are less targeted to people with disabilities, less sweeping about a specific class of people.”
The Special Olympics started the End The Word campaign and pledge several years ago, and every March they do Spread The Word To End The Word Day. But you know what?
Today is a day to stop using the word “retard.”
Tomorrow is a day to stop using the word “retard.”
The day after that and the day after that are days to stop using the word “retard.”
Any day is a day to stop using the word “retard.” Make no mistake: It hurts. See?
Update: I just wanted to say that I put this post up before I’d read the big news about the rise in autism rates. More on that coming soon, along with a series of posts from autism parenting bloggers all throughout April, Autism Awareness Month.
October is National Down Syndrome Awareness Month. This guest post is by Hallie Levine Sklar, a mom of three who blogs over at Visions of Johanna.
“That kid’s a retard. A total f**g retard.”
I froze mid-motion when I heard those words. I’d left my husband with our three small children so I could have some time alone at our town pool to swim some laps.
As I’d walked in, I’d seen a bunch of teenage male lifeguards by the snack bar, snickering. I hadn’t bothered to pay attention to them until their voices reached me.
“That kid’s a retard,” one of them was shouting, a boy with white blonde hair and ears that stuck out from his head like Dumbo’s. “A total f**g retard.” He thrust his hands and tongue out, rocking back and forth with a Frankenstein like gait. “I can’t stand him. I mean, how f**g retarded can you be?”
Then he saw me. His eyes widened and his mouth opened and closed again and again, like a crazed dying guppy. He slowly lifted his right hand, waving it back and forth at me in a pathetic attempt to say hi.
“Oh s**t,” I heard another one of the lifeguards say.
You see, my eldest daughter, Johanna—who is 3 ½—has Down Syndrome. Fifty years ago she would have been labelled as “mentally retarded” and my husband and I would have been told to shunt her off to an institution. Thankfully, we live in a more enlightened world today, where the doctors and therapists who work with Jo Jo label her “developmentally delayed” and rave about her potential.
I don’t often hear the word retarded anymore, but when I do I cringe. Before Jo Jo were born, my husband and I often threw around the r word. We’re both type A people with limited patience, and when someone didn’t move fast enough to meet our needs—whether it was the cashier at our supermarket or the customer service rep on the phone—we’d roll our eyes and mumble, “retard.” We loved Family Guy and South Park and every other show that poked fun at people who didn’t meet our intellectual standards. I remember being eight months pregnant with Johanna and watching a scene in Borat where Sascha Barot Cohen (aka Ali G) horrifies the other guests at a dinner party by talking about his “retarded” brother who was kept in a cage. I laughed so hard I wet my pants.
Then our daughter was born and everything changed. Once we got over the shock of the diagnosis, we fell in love with our baby, with her wisps of red hair and little rosebud mouth and huge almond-shaped hazel eyes that crinkled up when she smiled. Somehow, the word retard was no longer humorous. It was blatantly, obscenely offensive.
I could tell the boy was mortified to have been caught saying the r word in front of Jo Jo’s mom. All the lifeguards at our pool know who Johanna is—besides being insanely cute with her French braids and Ralph Lauren pink bikinis she became famous (well maybe infamous) this past July when she made a huge number two in the toddler pool that blasted through her swim diaper.
A few moms were sitting with their kids at the picnic tables, watching me closely, and I realized with a sick feeling in my stomach that they all wanted to see how this scene would play out. Part of me—a really big part—just wanted to keep walking over to the competition pool and swim my laps like nothing had happened. But I knew I wouldn’t be able to live with myself if I did that. I sighed and walked over to the lifeguards. “I’m sure I don’t have to tell you that as the mother of a child with a disability, I find your use of the word retard horrifying and offensive,” I said to the boy.
He blushed, making the blotches of acne on his face even redder. “No ma’am,” he said. “You don’t.”
“For the record, I don’t find the word retarded itself problematic—taken literally, it means to go more slowly,” I said. I tried to keep my voice calm and level, even though I really wanted to slap him across the face. “But it’s people like you, who use the word in a derogatory manner that I find offensive.” I turned around and walked away.
I got into the pool and fiercely began swimming laps. I knew the pool was 25 meters, so I began mentally calculating how many laps would equal a mile. When I’d finished and walked, dripping, through the main entrance, the boy stepped out in front of me. “I just want you to know,” he said, “I’m really, really sorry, and I won’t ever use that word again.”
My head was pounding. I wasn’t sure if it was from the chlorine or simply from having to deal with a situation I didn’t want to be in.
“I think your daughter is adorable,” he added. His eyes were blinking rapidly and with his long pale eyelashes he looked for a moment like a large terrified rabbit. “I wasn’t thinking of her when I said it. Honestly.”
“I’m sure you weren’t,” I said. “But think about her every time you’re tempted to say the word retard.”
“I will,” he said solemnly. “I would never, ever want to hurt her feelings.” I wondered if he was sincere or if he was worried I’d complain about him and quash his chances of scoring the same cushy job next year.
I guess I have too much other stuff going on in my life to worry about what’s going through some adolescent’s brain. But as I walked to my car, I kept thinking about that word, and how scornful and ugly the boy’s mouth had looked as he said it.
I don’t want to think about a decade from now, when someone will say it spitefully in front of my daughter and I will watch her face crumble as she grasps the implications of the word.
I’m just glad that she wasn’t with me at that moment, and that she’s still too young to understand. I can only hope that by the time Johanna reaches puberty, the term retard will have gone the way of other unfortunate trends like big hair or acid washed jeans—that is, it will have become obsolete.
In August of 2010, a 27-year-old British woman with learning disabilities, Gemma Hayter, was severely beaten and left naked at a railway embankment. A jogger found her body. It was later discovered that her killers had locked her in a bathroom, forced her to drink urine, shoved a plastic bag over her head and committed other unthinkable acts.
This week, two men 18 and 20 years old and a woman who’s 22 were convicted of her murder and given life sentences. Two other men got 13 to 15 years for manslaughter. They were all from Hayter’s town, and had been tormenting her while claiming to be her friends; the beating started in an apartment after a disagreement following a night out. The judge presiding over the trial described the torture and murder as “a chronicle of heartlessness” and said, during sentencing, “It is difficult to find the words to express how vile your behavior was.
A blogger for the British newspaper The Guardian, Nicky Clark, a mom to two children with disabilities, wrote a powerful post about how disability hate crimes like this begin with verbal abuse. Words such as “retard” that demean people with mental disabilities only fuel people’s loathing. As Clark wrote, “Hate speech isn’t free speech when it locks others into a prison of stereotyping and perpetrates abuse.” And if you think this sort of atrocity doesn’t happen in our country, well, Google the words “mentally disabled woman murdered” and see the horror that crops up.
Like Clark, I have spoken out about the use of the words “retard” and “retarded” and advocated for the Spread The Word To End The Word campaign, started by The Special Olympics. As the mom of a child with special needs, it’s painful to hear the words carelessly tossed around; they demean people with disabilities even when not spoken directly to them, and perpetuate the idea of them as stupid. What’s especially pained me are the defensive, rude and downright belligerent responses I’ve gotten to my requests for people to find others words to use, particularly during one campaign I did on Twitter in which I asked people tweeting the word “retard” not to.
It’s deeply troubling to think that language like this could spark hatred that kills. Obviously, Gemma Hayter’s killers had other issues, as does anyone who would torture a person with disabilities. And yet, language like this spreads the idea that people with disabilities are lesser human beings—and makes the idea of doing them harm that much easier to consider.
“Sticks and stones may break my bones but words may never harm you,” is a phrase my mother used to recite to me as a child, whenever this one bully bothered me. Sadly, that cannot be said for the word “retard.”
Rest in peace, Gemma Hayter.
I am curious to hear about your experiences: Do you hear people using the words “retard” and “retarded”? Have you stopped using them yourself?