Things People Say

After driving through the carwash with a mesmerized Sophie, our outing of late that relieves my guilt at not providing enough stimulation, I pulled into a local small restaurant to pick up some food for the workers who are turning my yard into a drought-tolerant paradise. I intended to leave Sophie in the car while I ordered at the outside counter, within eye-shot, in a handicapped space. The spot was filled, though, with a large, red SUV so I pulled into another spot around the corner and took Sophie out. We made our way awkwardly up to the counter (Sophie isn't walking very well these days which I'm attributing to drug withdrawals, but who the hell knows?), and because the handicapped spot is right next to the counter, I saw that there was no indication a handicapped person was in fact using it. In other words, there was no license plate or placard hanging from the rear-view mirror. I waited in a long line, keeping Sophie from sitting on the pavement, one eye on the spot, in hopes that I might call out the person who was using it without a placard. I could see inside the small restaurant, how every table was full but that there were no visible indications of disability. This doesn't mean anything. When I finally got to the window to order, I told the cashier that someone was parked in the handicapped spot without a placard, that I had a handicapped daughter and had to park a distance away, that I hoped he could find the person who had parked there and perhaps let them know. He smiled incomprehensibly at me and told me that he'd let his manager know. I ordered. He did not make any attempt to let his manager know and continued to take orders.

I girded my loins.

Excuse me, I asked a couple dipping curly fries into a white cup of ketchup, is that your red Honda in the handicapped spot?

I asked another couple with two small children the same thing.

I asked a family identically clothed in USC red and gold tee-shirts as well. I tried not to let their choice of college sport regalia affect me, pulled my loincloth a bit tighter.

Excuse me, is that your red Honda in the handicapped spot?

The man rose up and said, Yes, that's mine, and he turned to his wife, and she said, Oh! We forgot to put our placard up! 

And I said, Oh, thank you because I was going to be so upset if it was just someone using the spot! 

And she said, I always forget! I'm physically handicapped, but sometimes I'm retarded, too!















This is, of course, an equal opportunity post.

On the Road with Disability Education

Many of you contacted me about a follow-up after I posted about a presentation that Oliver and I did for a group of fifth graders at a very exclusive private school here in Los Angeles. Last night, I saw my friend who had arranged the whole thing, and she told me that she and the other teachers were very moved by our presentation. She suggested that Oliver and I go on the road to do our thing, and I have to admit that the idea appeals to me. Oliver, of course, is gung ho, so maybe we'll make it into a homeschool community service project. I am still so utterly grateful for this opportunity as it turned into one of the most moving experiences that I've ever had, particularly as I did it with Oliver.

In a nutshell, we faced about fifty-five young boys and girls and four of their teachers, as well as the director of the elementary school. Looking out over the sea of little faces, a diverse group that belied their probable very well-to-do backgrounds (and celebrity parents), I basically launched into a discussion about what it's like to have a daughter who is disabled from seizures and how our culture makes her an other. Oliver sat next to me in a matching rocking chair and easily added in his own observations and experiences. We talked a lot about social injustice, and I emphasized my belief that persons with cognitive disabilities are at the bottom of the totem pole, still, in a world that sometimes very inadequately strives to afford dignity to every person regardless of their sex, sexual orientation, race and religion. We talked about the word retarded, how difficult it is to combat its use. I told them that I still have friends who use it, and how every time they do, I wince and feel defensive about saying something. Oliver told them to stand up and stay cool when they hear the word, that they can tell their friends to knock it off and use a different word.

I told them, too, about my #dontstarepaparazzi movement, and I even showed them one of my shots that I'd taken. We told them that pain doesn't come always from the person with disabilities but rather the culture and the people within it that exclude, fear and pity them. I shared stories of walking with Oliver when he was younger, how he noticed people staring and how angry it made him, that he'd tell me he wanted to kick those people in the legs, Mommy! This part of the discussion garnered a lot of laughs, but I think it also had the biggest impact on them. I welcomed questions, even as I spoke, and I was almost immediately peppered with them. One girl asked what they should do when they see someone with disabilities, and Oliver said smiling and saying hello always works. Then we joked again about Oliver asking me one day, after enduring the stares of a group of kids who were way too old to be doing so, whether he could have PTP. You might remember what this stands for, and the kids in this class laughed out loud when I told them.

One little girl got to the edge of deep emotion when she told me that after a recent outing to an accessible playground where the kids were buddied up with children with disabilities, she felt uncomfortable and sad and couldn't stop crying. I gently told her that being emotional and uncomfortable is normal, that our fears of difference can be overcome. Oliver pointed out that when he first visited Sophie's high school special education classroom he, too, was uncomfortable, but that when he accepted the kids and grew to know them, he realized that there was nothing to fear. We also pointed out that both Henry and Oliver don't feel sorry for Sophie or think she's scary or strange. She's a part of our family and not other. I said that we hated the seizures and felt terrible for her when she had them, but they weren't what made her a human being and that she wasn't to be pitied but, rather, celebrated. 

I emphasized that people with cognitive disabilities have much to offer the world and that while we might feel good when we do community service with them or interact in superficial ways, as we grow more intimate with people of difference, we realize that they are teaching us and have a far bigger impact on us than we might on them.That led to a discussion about what I called disability porn, the type messaging we see on Facebook and in the media and on the internet that masks exclusion and discrimination by somehow celebrating triumph over disability. I pointed out that we can admire and be moved by stories of people overcoming adversity, but that this type messaging sometimes excludes a vast number of people who might never overcome, might not ever talk, might always be very sick or deformed or even die from their disabilities and that they, too, should be honored and celebrated because they are alive and have dignity as full human beings. I read to them the story I had published in an anthology about visiting a very eminent doctor at UCLA, how he was teaching his students on the day we visited and how he gestured toward Sophie in her wheelchair and called her a disaster in front of all of his students, even as I and Sophie sat there in the office. When I looked up, the teachers and students had tears in their eyes, but we discussed for a good amount of time what makes us human and how we might advance inclusion and social justice for people with disabilities, even those that are invisible.

When we were finished, several of the children came up to us and asked the sweetest of questions, often beginning them with the words I have a connection to make. They would then tell me of a cousin with autism or an aunt in a wheelchair or a brother also named Henry, and there was a moment when I wanted to gather up all of these privileged children in my very soft and strong arms and just hug all the hope and promise into me, letting all bias go, including my own.

This, too

George Mason University in Fairfax VA has a unique program called the Mason LIFE Program. The Mason LIFE Program is an innovative post-secondary program for young adults with intellectual and developmental disabilities who desire a university experience in a supportive academic environment. Watch the video and share it!

Some of you might find this tiresome, but please:

This says it all.

What warms the heart and sustains:

this post, by the fabulous Grady Doctor.

Thank you, Dear Dr. Manning.

Thank you.

A Dog with Two Bones

That would be me, of late, the first bone being Ann Coulter's use of the word retard and the discussion that cropped up around it, the second being the looming threat of a Romney win and his promised repeal of the Affordable Care Act.

Some dogs chew more effectively on their bones, though, and my friend and fellow writer, Jeneva Stone is one of the big dogs. She re-posted one of her best this morning on Facebook, and I think it's not only required reading, it's imperative reading. I so wish the 24 people on my Facebook page who've checked LIKE on Mitt Romney's page would read Jeneva's essay. I wish many of my relatives would read Jeneva's essay. I hope that those of you indifferent to the Affordable Care Act will read Jeneva's essay and ponder on it a bit.

Here's an excerpt, but please read the entire, brilliant and impassioned plea.

A few years ago, I read most of T.R. Reid's book, The Healing of America, in which he suggests that universal healthcare arose in other countries through some sense of national commonality or other community sensibility: the Brits pulled together after WWII, the Germans rallied round the idea of the common German man (or person, I suppose), and I don't recall what drove the other countries' reasoning. Fairness, I suppose. Cost savings. Desire to improve quality of life. You know, all that reasonable stuff.
Well, not here. In his first chapter, Reid says, "Americans generally recognize now that our nation's health care system has become excessively expensive, ineffective, and unjust." Note that word "unjust." Read the status update above again. "Unjust" because, apparently, that's the way we like it. In his conclusion, Reid notes that "the American reliance on private, for-profit health insurance companies for the bulk of medical coverage is in accord with American values of capitalism and freedom."
As Americans, we value not only capitalism and freedom, we also value merit and "hard work." Because our health insurance system developed as a jobs benefit, we have become accustomed to associating access to health care with the ability to hold a job. People who can't hold jobs don't deserve "benefits" like health care. Because they are lazy, apparently.
Or at least that's the way Americans tend to think when we think at all. Most of the time we're too busy being independent pioneers and starting our own businesses and raising our children according each to her own individual belief that we really don't have time to think. Or when we have time to think we mostly think that Americans who whine about health care are lazy or have government jobs, otherwise known as "sucking on the government teat." Or some less polite spelling. I see that in comment threads all the time, which my husband constantly tells me to stop reading.

As my little sister says, I hear you barking, big dog.

One More Thing

Oliver, during No Name-Calling Week in 2010

I've been mulling over this Ann Coulter fiasco and feeling conflicted, still, on whether or not to keep making a fuss. I understand people's assertions that Ann Coulter is about making a fuss and that our outrage and disdain for her fuels her. I understand, too, and lean probably closer to the assertion that it's terrible to say nothing and that fueling her fire is perhaps the price to pay because silence is far, far worse. One of my favorite bloggers, Stephen Kuusisto of Planet of the Blind writes that Ann Coulter's name-calling has strayed glibly into fascist rhetoric. I'm not going to stop thinking about it or talking about it, either, no matter the initial "power" it lends Coulter.

Last night, after emailing a bit with another mother of a child with special needs, I thought about the publicity in general and how good it is in general. I thought about the huge numbers of people who have come to my blog over the past three days, when I've written about this. I thought about the many people I know that continue to use the word retard in conversation, casually, and while they might remember not to when I'm around, or quickly apologize if it slips out, they're still using it. A woman who performed in Expressing Motherhood, a warm and funny and beautiful person in every way, made a comment that she felt like a retard. I recently went to a lunch with a group of women, most of whom were my close friends, and one of them described herself as a big retard when she ran. Now, I know these people don't think anything of this word and perhaps don't even realize how hurtful -- even devastating -- it can be, to me, to Oliver, to Henry or The Husband. I'm not sure whether they realize that when they describe themselves as stupid or goofy, they're comparing themselves to Sophie. I'm thinking, though, that big splashes like the Ann Coulter one might imprint in otherwise wonderful, loving people and that they might, at last be educated. I'm hoping that they read some of the letters and emails and blog posts and Facebook updates that I've seen these past few days, have written myself, and really work harder on how they communicate.

And if they don't, I'm afraid I have to agree with many others that it's a reflection of their characters, and they are, basically, assholes -- no better than Ann Coulter.

What do you think?

Burning a Bonfire

You know? I'm just going to type it out here: a response to my own response to Ann Coulter's vile slur against not only the President of the United States but all the children I know and don't know with an intellectual disability, the children, like Sophie, formerly (not formally) known as retards -- 

I'm tired of the comments that claim Ann Coulter is a bitch who is more an entertainer than a journalist or even spokesperson for the Republican party and that any outrage expressed is fuel for her, that we should just turn our heads and not cry, Stop! but rather be silent, ignore her and move on.

I would rather build a bonfire.

Here's another remarkable essay by the writer Robert Rummel-Hudson who says just about everything that I'd say, sans bonfire, including this:

If Liberals excuse her remarks because we think she's a buffoon who is clearly desperate for attention, we become complicit. If Conservatives distance themselves from her and say "Well, she doesn't speak for me, so I have no duty to rebuke her," they are also complicit, because it's not a political issue. It might be a little different if she were abusing communities with any power or any privilege, groups that could push back.

Read the rest here.

My only nod to politics, this late in the game, or why I'm voting for "the retard."

Last night, Ann Coulter, one of the Republicans' top spokespeople tweeted the following:

I highly approve of Romney's decision to be kind and gentle to the retard.

Yeah, plenty of people who support Obama use the word retard, and I'd call each of them on it, if I heard it, but if someone's measuring the despicable shit that's been flung around on this election cycle, I feel certain the Republicans' vile combination of jingoism, family values, outright racism and condemnation of entire groups of people certainly tips the scale.

I don't want to live in an America that is populated by a majority of people who have voted for Romney, because I think their viewpoints on most social issues are repellent and not worthy of respect or tolerance.

I'm voting for Obama, or as the witty, patriotic, conservative Republican Ann Coulter said, the retard.

Enough said.

Retard

Got your attention?

Good. May that be the last time you see the word displayed so prominently.

Today is the annual Spread the Word to End the Word Day. I've said enough about it, so I'm not going to say anything else. Read this for some perfectly perfect remarks about the word.


And read this, an essay that my ten year old son Oliver wrote all by himself as his submission to the No Name Calling Week contest:

 “RETARDED” AND WHAT DOES IT MEAN?

By Oliver 

The word “retarded.” What is its beauty and what is its downside and what does it mean? The question remains. When I get home from school, I wonder to myself about some of my friends and just anyone in general who says the word “retarded” whether they really know what that word means. And all the times when they say it, are they sure that they know what it means and are they sure that when they say it, they are not hurting anyone's feelings around them? The question remains. People think the word “retarded” means dumb, stupid and lots more hurtful things. All of those words hurt my feelings because my sister is cognitively disabled, which means it's harder for her to learn than it is for people with a normal brain. She can't walk without help and can't talk either, but that doesn't mean she's stupid or dumb. She stills knows how to think and interact with other people; she is just different. When people use the word “retarded” as a put-down or a joke, it hurts me and my sister and all the people like her. I wish they would stop.

To Tracy Morgan, the kids on the playground, some of my friends and the boys at Oliver's Sports Camp

Watch this, please -- to the end. Well, even if you're not Tracy Morgan, a kid on the playground, one of my friends or a Sports Camp guy, please watch it.

The Escapist : The Big Picture : Correctitude

It's not acceptable

Along with Robert Rummel-Hudson's brilliant piece on it, and my friend Jeneva's recent blog posts, HERE and HERE, the television series Glee is getting in on the campaign to end the use of the word retard. I have friends who still use the word around me -- apologetically, of course -- but they just don't seem to get it. Maybe this will help: