It’s Not the Disability, Stupid

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Well, the disability community’s Interwebs were lighting up again yesterday. This time, it was about Meryl Streep’s acceptance speech for the Cecil B. DeMille Award at Sunday night’s Golden Globes. For those who haven’t heard, Streep embedded in her speech a bit of criticism of one of Donald Trump’s more embarrassing moments on the campaign trail:

This instinct to humiliate, when it’s modeled by someone in the public platform, by someone powerful, it filters down into everybody’s life, because it kind of gives permission for other people to do the same thing. Disrespect invites disrespect, violence incites violence. And when the powerful use their position to bully others we all lose.

She was referring, of course, to Trump’s criticism of Washington Post reporter Serge Kovaleski, especially his mimicking of Kovaleski’s disability.

In response, as he has asserted many times previously, Trump told The New York Times, “I was never mocking anyone. I was calling into question a reporter who had gotten nervous because he had changed his story.”

The Data? The Argument? Or the Person?

Many people will find Trump’s words hard to swallow, but I wonder if something else isn’t going on here. I’m tempted to believe him when he says he wasn’t mocking Kovaleski’s disability. It’s likely that, to his mind, that’s not what he was doing at all. To his mind, he was simply rebutting something Kovaleski said. Full stop.

That’s where the problem lies.

It seems that Trump makes little distinction between the words that offend him and the person speaking the words—every aspect of that person. So if Kovaleski has offended him by implying that Mr. Trump wasn’t telling the truth about seeing thousands of Muslims celebrating the Twin Towers’ destruction on 9/11, then Kovaleski himself, in his totality, is fair game. And when he looks at Kovaleski, he sees the disability as a defining characteristic, one that is available to him as he pursues his retribution.

This tactic is similar to the way Trump responded to Meryl Streep’s address—tweeting that she is “over-rated.” As if her acting talent (or supposed lack thereof) disqualifies her from offering a considered opinion on any other matter. She’s a washed-up actress, so she must be wrong. About everything.

You see, it’s not enough to engage the argument; you have to destroy the person making it.

“We Create Our Own Reality.”

I don’t think Donald Trump is a pioneer in this area, either. He may have put his own personal stamp on it, but it’s been around forever. Especially on the political stage, but in other aspects of life, many assume that the best way to win an argument is to paint the one making that argument in the most insulting of colors. So anyone who supported Hillary Clinton is an abortion-loving, traditional family-hating liberal. Anyone who supported Trump is a heartless, uneducated, white knuckle-dragger. Opponents of Obama are racists, and pro-life people hate women’s rights. Truth and facts be damned, it’s all about the character of the person. Destroy the person, and you destroy the argument. And push aside the facts.

This reminded me of a conversation that journalist (and, incidentally, autism dad) Ron Suskind had with George W. Bush advisor Karl Rove. Here’s Suskind describing their exchange:

[Rove] said that guys like me were “in what we call the reality-based community,” which he defined as people who “believe that solutions emerge from your judicious study of discernible reality.” I nodded and murmured something about enlightenment principles and empiricism. He cut me off. “That’s not the way the world really works anymore,” he continued. “We’re an empire now, and when we act, we create our own reality. And while you’re studying that reality—judiciously, as you will—we’ll act again, creating other new realities, which you can study too, and that’s how things will sort out. We’re history’s actors . . . and you, all of you, will be left to just study what we do.”

This, I think, gets to the heart of Donald Trump’s (and many other people’s) way of dealing with inconvenient facts. Take the focus off of that which can be documented, and put it on the more subjective and ephemeral. Create a new reality, and create it loudly enough, and you’ll outshout the data.

Truth, Power, and The Art of the Deal.

I’ll close with one more quote. This time from Peter Steinfels, one-time editor and now occasional contributor for the Catholic magazine Commonweal.

Mr. Trump does not appear to see public discourse as a process of establishing a state of affairs and drawing conclusions from them.  He sees it as a process of negotiating—a negotiation that is ultimately a power struggle. As The Art of the Deal advises, you open this struggle with an extreme position, or in public debate the most exaggerated, inaccurate, even preposterous pronouncement available and then, if necessary, you ratchet down.

Discourse is not, in effect, about truth. It is about power. In this respect, Mr. Trump has a quintessentially postmodern mind. The stricture against lying is about as relevant to this understanding of public discourse as the infield fly rule is to backgammon.

So no, it’s not the disability, stupid. It’s just that: calling people stupid, or lame, or losers, or has beens, or wannabes, so that you don’t have to reckon with facts.

Of Trailblazers and Human Pokémon

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So here we are at Halloween, the second most expensive holiday of the year. Actually, our family has been living this holiday for nearly three months, as our kids usually begin planning for it just as back-to-school shopping begins. One in particular plans for a particular costume, then obsesses over whether it’s the right one, then scraps those plans and comes up with a new one, then obsesses over that one again, until . . . well, you get the picture. It’s not uncommon for people with ASD to get stuck on one thing for days and weeks at a time. It’s a form of perseveration that can lead to anxiety and depression, so we try hard to help the kids keep it to a minimum—with varying degrees of success.

A Quirky Constitutional.

But that’s not the story I want to tell today. I want to tell you about a little walk that one of our daughters took the other day. That’s her in the picture above. She decided to go trick-or-treating as a human version of the Pokémon Spritzi. But as a sort of practice run, and just because she wanted to, she told us that she wanted to walk around the neighborhood this Saturday in her get-up. That’s right, up and down the sidewalks with a mask, umbrella, dressy shoes, and pink dress. In broad daylight. On a regular autumn day. Oh, and she also wanted us to take her downtown so she could walk around Baker Park in full regalia.

Her request confronted us with a question that I suspect many ASD parents face. On the one hand, in defiance of a neurotypical one-size-fits-all world, we encourage our kids to be themselves. There’s no need for them to try to force themselves to be “normal” as general society defines normal. There’s also no need to add to their anxiety or sense of otherness by implying (unintentionally) that they have to hide who they really are.

But on the other hand, we know how odd a human Pokémon can appear to most of our neighbors. We don’t want our kids to be labeled as “weird” or, worse, bullied by neighborhood kids. This daughter, in particular, had some tough experiences in eighth grade, and the memories of it still haunt her two years later.

Quite the Quandary.

So that was our quandary: do you protect your kid? Or do you affirm his or her uniqueness and creativity? Do you do your part in helping to change society’s perceptions? Or do you give your kid a lesson on what the real world is like and on how to fit in without compromising themselves? It’s a perpetual balancing act, with no right or wrong answer.

In the end, we didn’t have to give any answer—mercifully. She slipped out on her own in the middle of the afternoon, while I was out running errands and Katie was upstairs cleaning. She had a nice little constitutional around a couple of blocks with hardly a peep from anyone. Just one person on our street made a comment, and even that was mild and jovial.

Still, I’d like to think that whatever choice we made, it would have been made in love and with the best of intentions.

Trailblazers by Default.

It’s hard sometimes knowing which side to come down on—with this and many other issues. There’s no manual for parenting, and that’s doubly true for ASD parenting. In the neurotypical world, you have the experience and example of the many people who have gone before you or who are walking along the path with you. But ASD parents often find themselves walking by themselves, and on a different path.

I think this is especially true for our generation. Ours is the age of Temple Grandin, Steve Silberman, and Parenthood. Ours is the generation of disability advocacy, the ADA, and IDEA. It’s only in the past decade or so that ASD has become better diagnosed and recognized. So in many ways, we are the trailblazers.

It’s not just in our neighborhoods that we’re blazing trails. Through our advocacy for our kids, we are teaching school administrators and teachers about autism. We are helping our churches learn how to be more welcoming and openhearted. We are making parks and playgrounds more accessible. And we’re doing it not just for our kids, but for the others around us—and even more important, for the next generation.

So keep this in mind, all you special needs parents. Your work is having a far greater effect than you know. Just by walking down the street or into a McDonald’s with your kids, you’re making a huge difference. A trip to the library or a walk in the park means a lot more than exercise for your kids. Every contentious IEP meeting adds another brick in the road toward full inclusion and acceptance. You probably don’t even know that you’re doing it, but you’re blazing a trail just by embracing the family God has given you. You’re paving a way to make a brighter future for everyone—even the human Pokémon among us.

A Breach of Trust at The Mount

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Take a look at this article from The Washington Post. It covers a controversy that has been roiling the campus of my alma mater, Mount St. Mary’s University, in Emmitsburg, MD, for the past few months. It seems that the newly-installed president initiated a survey for all freshmen to take early in their first semester. It was presented to the students as a way of helping them get to know themselves better as they transition from high school to college, and to help them understand better “the person you are and could become.” Fair enough. Everyone likes taking personality inventories and surveys like the Myers-Briggs Type Indicator. It’s helpful to know what instruments like this tell you as you begin your academic career.

Only that’s not what the survey was really about. It was designed to help the university identify which students were at the greatest risk of dropping out so that administrators could encourage these students to leave early in the semester. And it was done in the hopes of boosting the school’s retention rate, thereby getting it better ratings in places like the US News ranking. The information in the survey was meant to be shared and discussed, not just scored and returned to the students for them discuss with their advisors.

Probing, Inappropriate Questions.

Now, the misrepresentation of the survey’s purpose is bad enough, but what’s worse is the fact that some of the questions are one-sided and not really related to its stated goal. Have you experienced a death in the family in the past year? Are you taking on major student loans? I don’t see how questions like these can help the students come to know themselves better.

But wait—it gets worse. An entire section of the survey is dedicated to the student’s mental health. They are asked how strongly they identify with statements like: In the past week . . . I felt depressed. I felt that people disliked me. I thought my life had been a failure. These are very personal questions, and the students should never be asked to divulge this kind of information—especially in a survey that is not kept confidential. They are also asked if they think they are calm and emotionally stable. Can they be trusted with money? Are they a hard worker? Have they been obsessed with a certain idea or project and then lost interest?

Then comes the final indignity. The closed-ended section of the survey ends with a question that comes out of the blue: Do you have a learning disability?

Seriously?

A Breach of Trust.

The best word I can find to describe the survey and its intended use is repugnant. Targeting for removal students who report feeling unstable is bad enough, but then expecting them to divulge whether they have a learning disability crosses several lines.

First, a student with a disability has the right not to disclose that disability to the school. At all. Ever. It is no one else’s business except the student’s—and anyone to whom he or she wishes to reveal it. It’s like Federal HIPAA guidelines; this information is protected by law.

Second, if a student does disclose a disability, the school is obligated to work with that student to determine the appropriate “academic adjustments” that will ensure that he or she is given an equal education opportunity. While not as stringent as the IEP process for elementary and high school students, the Americans with Disabilities Act lays out specific requirements for colleges—at least for those colleges, like Mount St. Mary’s, that accept government funding.

Finally, the school is obligated to keep this disclosure confidential. A teacher may not tell other teachers or students without the student’s permission. An advisor may not tell the president or dean. Again, it’s up to the student to decide who should know and to inform the appropriate people.

Elite Enclaves?

What is disturbing in this story is the implication that someone with a learning disability doesn’t belong in college. Or that someone struggling with anxiety or depression should drop out. It turns colleges—especially small, private ones like The Mount—into enclaves for the elite and privileged, for the well-adjusted and socially savvy.

But there are plenty of people with disabilities and disturbances who are more than capable of succeeding in higher education. What’s more, plenty of these people have the potential to go on and do great things with their lives—and great things for the people around them. Robin Williams comes to mind. So does Theodore Roosevelt. Or Charles Shulz. And, of course, Temple Grandin.

Not to mention, the presence of students who “deviate from the norm” is a great gift to any campus. Not to get too maudlin, but students like these challenge their peers’ assumptions and prejudices. They redefine the word “ability” for their teachers. They are a humanizing influence, opening people’s minds and hearts at a time in their lives when they are making crucial decisions about the kind of person they want to be.

I have children who would absolutely bomb on this survey, but who are earning As and Bs in high school. How would they fare? Or worse, what would they think of themselves when asked all of these questions? I hope they would have the common sense to either lie or leave them unanswered. I would be thrilled if they had the courage to challenge the whole thing and refuse to answer a single question. But I don’t know how they would respond. I can’t help but think of how questions like the ones above could convince someone that he or she really doesn’t belong . . . when it’s just not the case.

Praying for a Turn-Around.

I spent four wonderful years at The Mount. I graduated Summa Cum Laude and went on to earn a masters degree and pursue a meaningful, successful career in Catholic ministry and publishing. Much of that I owe to the education I received there and to the spirit of camaraderie and Christian charity I experienced there. But the first semester of my freshman year was hell. I was homesick and depressed. I felt overwhelmed by the work load. I started off in a dorm room with obnoxious, mean-spirited roommates. I didn’t know how to navigate the social mores of a college campus. It took me a while to adjust, to find my niche, and to settle in. Once I did adjust, however, there was no stopping me.

I would have failed that survey; I would have been encouraged to leave. But that didn’t happen. There were enough faculty and upperclassmen who knew how to help freshmen like me find their way. They embodied the best of The Mount—and the best of the Catholic faith. It saddens me deeply to see this happening at an institution that means so much to me. I can only pray that things will turn around soon.

The Story That Never Was

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This is a story about a story that never became a story. Got that? A story. About a story. That never became a story.

A couple of weeks ago, I wrote a blog post about an incident that happened in our house over the holidays. But because it was a story about a couple of the older kids, I didn’t hit the Publish button right away. My older kids are on Facebook now. They have virtual friends. They’re connected to some of their cousins. And the story I was telling could be interpreted in more than one way. I saw it as an illustration of some of the challenges that teenagers on the spectrum face—along with a hopeful, encouraging conclusion about how my kids are working through these challenges. But other people might focus only on the challenges and the difficulties, and they might get the wrong impression about my kids.

See, I know a thing or two about ASD. I get it in ways that many other people don’t. Sure, my story might help people understand autism a little better, but at what cost? The way my kids’ friends perceive them? The way my kids perceive themselves? Was I putting them out there in the wrong way? It didn’t seem so to me, but I wasn’t sure.

So I did something I had been thinking of doing for a few months. I told them that I occasionally post stories about being an ASD dad on social media. Then I e-mailed my story to them and asked if they’d be okay with my posting it.

They were and they weren’t.

One of them had an easygoing response. “Whatever raises awareness, Dad, I’m okay with. I know you’d never make me look bad. I don’t even have to read your story. Go ahead and publish it if you think it will help.”

The other one was not okay. “I don’t want people to think I’m a nervous, insecure, insane, freak!” That’s all I needed.

And so the story never became a story.

Careful . . .

It seems we’ve entered a new era. When I started this blog back in 2012, it was easy to tell stories because the kids were young and unconnected. Now I have to be more selective. But that’s okay. I’m sure there will be plenty of stories to tell that don’t run the risk of putting them in a bad light. Stories like this one about my boy’s success at singing in the chorus. Or this one about my daughter correcting one of her teachers. Or this one about the Catholic psychologist who wrote some really messed-up stuff about ASD and who I convinced to issue an apology.

Part of me will miss telling some of the harder stories—not because I want to embarrass my kids, of course. I’ll miss it because there’s this perception about ASD out there that it mostly affects little kids, and that’s just not true. There are plenty of stories about young children, who are so damned cute and whose parents are just beginning to come to grips with a new diagnosis.

But there’s another whole population of ASD folks out there. They’re older, and it’s not so cute when they do some of the quirky things that autistic kids do. When someone is five, he’s precocious; when he’s 15, he’s rude. She’s given much more leeway when she’s three because she’s expected to “outgrow” her autism; when she’s doing the same thing at 13, she’s stubborn, willful, or disturbed. Of course, none of this is accurate, but it’s how they are perceived.

So I’ll be more careful. I’ll look for the stories that emphasize how awesome my kids are. Or how far the autism community has come in gaining acceptance—and how much further it has to go. Or how much Katie and I are learning and growing as we raise our kids. Or God knows what else. Because our kids are still autistic. They will be even when they become adults. And the world needs to see that this very broad autism spectrum runs not just from low- to high-functioning, but from infancy to old age as well.

Now, would you believe me if I told you that my story-not-a-story was the best thing I had ever written? No? Well, you’ll never know, will you?

 

 

Lots of Snowflakes

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My next stop was the enchanting kingdom of Arendelle, where I visited Queen Elsa. Like the other people I spoke with, she was very happy to record a message to kids on the autism spectrum. She got it right away when I explained why I was asking her to do this. You see, Elsa has special, unique abilities that most people didn’t understand, and this made her feel like an outcast. She was even denounced as a “monster” by the Duke of Weselton. She hid away for years, staying in the shadows, because she was afraid of her powers, which she couldn’t control. She also stayed in hiding because of how guilty she felt for having accidentally hurt her sister, Anna.

As you can see, Elsa was living under a dark cloud of oppression—much of it undeserved. I told her that many kids on the autism spectrum can feel that way as well. They can stand out from the crowd. They can feel as if they are too different from the people around them. Even worse, those things that make them different can overwhelm them and make them say or do hurtful things. Like Elsa, they can be bound up in guilt and fear. Some even build a colorful, imaginative world of their own, a refuge from the world where they are free to be themselves. But like Elsa’s ice castle, this refuge can turn into a prison as they remain isolated from the people who love them.

Elsa thought that her castle would protect her. She thought that it would be the one place where she express everything unique and awesome about herself. But then the outside world came crashing in. She became a prisoner of people who didn’t understand, people who didn’t love, and that made her more miserable than before.

It took an act of true love to finally set Elsa free—her sister Anna’s complete acceptance of her and her willingness to sacrifice her own life to protect her. That was the key. Knowing how much she was loved helped her lose all the negative thoughts she had had about herself—all the fear and guilt and isolation that was swirling around inside of her.

The best part about Elsa’s story is that her freedom didn’t mean that she became “normal” like everyone else. She was still the same shy young woman with a unique talent. But because she was surrounded by love, she learned how to harness that talent and use it for good. She let go of the bad stuff and embraced the good. And because of that, she was no longer subject to her powers; now they were subject to her. In the end, Elsa was free to be the one-of-a-kind person she always was. And that’s what she wanted to share with everyone.

Words for the Warriors

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Sorry about the low resolution. The sun was setting.

After visiting Aladdin and Jasmine in Agrabah, I hopped over to China to spend some time with Mulan. Because of the time difference, it was evening already. When I asked her if she would record a video message for kids on the autism spectrum, she told me she was delighted to do it. “But why me?” she asked. So I explained.

After spending years preparing for, and dreading, the role that everyone expected of her—that of a demur, domestic housewife—Mulan felt like a failure. “Why is my reflection someone I don’t know?” she wondered. It frustrated her to feel that she couldn’t live up to people’s expectations. Looking at the world around her, she wasn’t sure where she fit in or if she would fit in at all. She wanted to be herself, but she was afraid how people would react. She was afraid, too, that she would have no future unless she became someone she wasn’t.

But then war came, and Mulan’s aged father was ashamed that he couldn’t help defend his homeland. Mulan saw her opportunity and, like Joan of Arc, she disguised herself as a soldier and took his place. After an awkward start, Mulan blossomed into a confident, self-possessed woman and led an army into battle against the Huns. Finally free to be the person she always had been, Mulan saved her kingdom and restored honor to her family’s name. Not bad at all!

I explained this to Mulan and told her how similar her story is to many people on the autism spectrum. Like her, many of them are frustrated or feel inferior because they don’t fit most people’s expectations. They may not talk. They may not be interested in sports. They may prefer to spend time cataloguing their bug collection instead of going to a birthday party. People might call them “awkward” or “quirky” or far worse. Feeling like they don’t fit in, they may be tempted to give up on their dreams. I told her they needed to think of themselves as warriors willing to fight negative stereotypes. They needed to become strong so that they could make a difference in the world. And they needed the inner strength to look at their reflection and see just how awesome they really are.

Hearing all of this, Mulan was more than happy to record the video. In fact, she was downright eager to tell talk about how it’s okay to be different—as long as you’re true to yourself. She told them . . . well, see for yourself.

A Whole New World of Awareness

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Here I am, posing with Aladdin and Jasmine, prince and princess of Agrabah. I’ve always liked their story, and not just because the Genie is such a hoot. There’s something touching and inspiring about this couple, and I was eager to tell them what an inspiration they were.

Always called a “street rat,” Aladdin didn’t think he would amount to much. He resigned himself to accepting what other people said about him and  acted like a street rat. But then he met Genie, who transformed him into Prince Ali and helped him win Jasmine’s heart. Aladdin’s adventures showed him that it was possible for him to break out of the restrictions people had put on him. And so, emboldened by his newfound courage, he defeated the sorcerer Jafar and set Agrabah free.

For her part, Jasmine was a thorn in her father’s side. She insisted on marrying for love and not for political expedience. In fact, her determination not to be confined by other people’s expectations had a major role in inspiring Aladdin to break out of his shell.

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So meeting Aladdin and Jasmine was fun. But it was even more rewarding telling them about some of the challenges that kids on the autism spectrum face. I told them how much potential these kids have—that they’re “diamonds in the rough,” just as Aladdin was. I also told them how easy it could be for these kids to accept a lesser vision for their lives simply because of the way other people treated them.

As sad as they were to hear all this, there were also touched to learn how many of these children are deeply loved by their parents and that their parents weren’t going to give up until they gave their kids the best possible future. This moved Aladdin especially, since he grew up alone and had no one to take care of him. Talking with them, you could tell how happy they were to see these kids being surrounded by such love and encouragement.

And so they were more than happy to send a little message to all the ASD kids out there. Click on this link to see their special message.