Words and Expectations

As many of you know, I'm the advocate and medical guardian for an adult with autism. I've been helping to take care of him, and standing up for his rights, since he came into my life in the summer of 1984. His name is Jeff, and he also has significant developmental delays; back in the 1950s and 1960s, kids like him were labeled "mentally retarded," a phrase I've always hated. (Another phrase from that era was "feeble-minded," and it too created a set of low expectations.) As a professor of communication, I have often discussed with my students the danger of these kinds of labels-- the words society uses when talking about "the other" often reflect how those folks are treated. And let me tell you, there is ample evidence that kids who had the "retarded" label were seldom treated well. 

Back when Jeff was growing up, the common wisdom was that "those kids" couldn't learn. Some did manage to get put into Special Ed. classes, and thanks to dedicated teachers, they were able to thrive in spite of society's inaccurate judgments of their abilities. But all too many were put into institutions. Parents were encouraged to do this, in fact, and they were told it was for the best. After all, these were supposed to be schools, places where their kids could get the help and attention they needed. But while most of these places had benign-sounding names, what they really were was institutions, many with draconian conditions. 

Today, thanks to dogged investigative reporting, and class action law suits, we finally know what went on in some of those "schools"-- and I promise you, it wasn't learning. It was often punishment. And in some cases, it was abuse-- both verbal and physical. (If you think I am exaggerating or being dramatic, I recommend an award-winning 2004 book, also the subject of a segment on 60 Minutes, called The State Boys Rebellion, by Michael D'Antonio. Jeff isn't in the book, but he certainly was at the institution where the book took place. And to this day, he still recites for me some of what was said, and done, to him there.)

When I met Jeff (a long story, better told some other day), he barely spoke. He communicated by various vocalizations that sounded like animal noises. He often screamed, or hit himself. He seemed traumatized, but he couldn't tell me, because he lacked the vocabulary. I don't know why he was put into my life, but I've always believed it was supposed to happen. I was told by all the "experts" that I was wasting my time working with him. I was told about his diagnosis. I was told that someone like me, a rock and roll deejay, lacked the skills to help. But I knew I was supposed to be there. And I promised him I would be there for him, no matter what. It's a promise I've kept, along with my husband, for more than four decades.

And one day, he made eye contact with me and said, "I love you, Donna." And one day, gradually, his verbal skills began to improve. To make a long story short, he has far exceeded what everyone told me he'd be able to do. Today, he has more than 350 words in his vocabulary. He can read and write (although his understanding is probably that of a 5 or 6 year old, at least he is able to do it). If he knows you, he will greet you by name. But despite all the progress he has made, and the caring team that has helped to get him there, there is so much he cannot tell us. He lives in a world where he's still a little kid, and still living at home. Much of what he says is echolalic-- he repeats what others have said to him. But he never forgets what happened at the institution. If I'm even driving in that area, his body will stiffen up and he will say, "You don't live there anymore?" And I have to reassure him that he is never going back there.

Jeff's biological mom passed away the other day. It has been years since he saw her, and I probably won't tell him. Jeff doesn't understand abstract concepts like death. He lives in the "now," and he lives in his childhood memories. I think it's kinder to let him stay there, where his mom and dad are still around, and he loves to eat dinner with the family, and he loves visiting grandma, and he loves listening to music, and at night, there's someone to sing him a lullaby. And yes, he knows he used to scream sometimes and act out, but back then, nobody understood autism or developmental delays. Today, I think his story might have turned out very differently. But at least he's still alive and well, still able to learn, a loving human being who proves every day that the labels applied to him underestimated who he is... and who he has always been. 

The Things We're Not Supposed to Say

I was disappointed, but not surprised, to hear that Sarah Inama has decided to resign from her job as a sixth grade teacher in the West Ada School District, near Boise, Idaho. By all accounts, she was a good teacher and her students liked her; but the school board and her principal did not, because of the poster she had put up in her classroom. She was told the poster was "controversial" and "an opinion," and would be offensive to those who disagreed with it. And she was ordered to take it down. (The poster showed various colored hands, with hearts in the center of each one. It read: "Everyone Is Welcome Here.") 

At first, she complied, although she couldn't understand what was controversial about a message that she loved her students, no matter their race or their ethnic background. But many school boards, especially in conservative states, have passed rules against "divisive concepts." These rules prohibit certain subjects from being discussed in school, certain books from being read, and evidently, certain posters from being put up in a classroom.  

The more she thought about it, Sarah believed there was nothing "divisive" or "controversial" about the poster, so she took a stand, and put it back up. It didn't take long before she was given an ultimatum about removing it. So, she told a local reporter about her dilemma, and he did a story about it. Soon, many people (both locally and in other states) were rallying behind her. They too were mystified by what was wrong with teaching tolerance; and they let the school board know how they felt. But in the end, despite the many parents and students who applauded and defended her, the policy stood, as did the ultimatum. And so, she decided to leave, unwilling to remain in a school district where it was "controversial" to tell students they were welcome.

But this seems to be where we are now. Teachers are being demonized (and sometimes penalized) if they even mention topics that have been defined as "divisive." By the way, it isn't clear to me how these decisions were made-- divisive by whose standards? Most of the laws and rules these days seem to be  promoted by conservative politicians who have a specific agenda-- ban anything they perceive to be "woke" (whatever that means). The end result has been policies that stifle freedom of speech in the classroom, even at the college level. And decisions from the President and members of his cabinet have even led to books being removed from libraries, and librarians being fired. And for what? 

As an educator, I fail to see the harm in students reading books that have a wide range of viewpoints. I fail to see the harm in teaching history in an accurate and factual manner, discussing both the good and the bad about our country. It's my belief that the best educators are the ones who encourage critical thinking, helping students to understand controversial issues, not pretending such issues don't exist. I hope Sarah Inama find a new job in a district that isn't afraid of diversity. And I hope the many teachers and professors who have felt demeaned by our current political climate will soon get a reprieve. It's a sad state of affairs when a teacher can't even decorate a classroom to let students know they are welcome. Or is the real message our leaders are promoting that only some people are welcome... while others are not?