Saturday, April 22, 2017

The Continuing Education of a Privileged White Woman

It has been said that disability rights are the next great civil rights struggle of our time. I don't know how that statement is perceived by people who have been lucky enough to have never had their civil rights challenged. I do know that as a white person, lucky enough to have received an education -- taken it for granted, even -- to have lived a generally middle-class existence in America, to have believed in the fable of the pull-yourself-up-by-the-bootstraps American ethos, our struggles with the public school system have been eye-opening; an intimate exercise in understanding the broad differences that separate classes of privilege and how deeply embedded they are in our society.

Things have been quiet here at Day Sixty-Seven. When that happens you can be sure that, rather than nothing going on, there is more. The transition to High School for my boy was fairly traumatic for everyone in our little green house and ended badly. In December, I withdrew Oliver from public school, returning to homeschooling full-time with a very heavy heart. Without going into specifics I will say that generally-speaking this failure hinged on the beliefs of one special education teacher,  a whole system of lethargy behind her, and deeply entrenched ideas about who belongs and who doesn't. And despite laws that are meant to protect people with disabilities, and how egregious what happened to Oliver might seem to the uninitiated, it happens every day to students across the country.

With our return to homeschooling, our family focused on Black History for the month of February and watched the 2015 film, Selma. One scene, in particular, resonated deeply with me as it encapsulates so much about our own experience with power, marginalization and discrimination. In the scene, the character played by Oprah Winfrey, attempts again to apply for her right to vote. Although black men had been granted the right to vote according to the 15th amendment in 1870, and black women were granted that same right in 1920, local actions and regulations of disenfranchisement continued (and continues) in a widespread manner until the civil rights movement brought the issue to national attention in the 1960s. The movie, which took place in 1965, shows with breathtaking clarity how one person with privilege and power, backed by the sanctions of our society, can stand in the way of another person gaining access to his or her civil rights.

Throughout the entire fall, my son was denied his right to an education in this very same way. Hurdle after insurmountable hurdle was placed before him until we gave up and walked away. That same restrained fury and sadness that Oprah displays, the utter defeat that she bears, is ours as well.

During the period of time before I gave up, I spoke up. I wrote about it. I told everyone I knew that my son was not receiving an education, that he was not going to school each day, was not receiving any instruction and was being denied his rights.

People shifted uncomfortably in their seats. They made sympathetic sounds. They commented about how sorry they felt that we were having a hard time. But no one was appropriately outraged. And make no mistake, this inability to be outraged is how we enable systemic discrimination.

We have so othered people with disabilities that we don't believe their rights are as fundamental as those of everyone else. So no one stopped to wonder: What would I do if my child weren't allowed to go to school? because it would never occur to them that such a thing could happen, so confident are they in their privilege. (Note to reader: if you want to check your own biases, ask yourself if you're wondering about the other side to this story  - what reasonable explanation there must be for a district to not offer instruction to a child.) No one approached the schools and said: My neighbor isn't in school and that concerns me. or My friend should be here, shouldn't he? Perhaps they felt that there must be some good reason why a child would not be able to access an education -- as if the problem were with the child and not the system of belief. 

This is America, after all, we have a right to vote and a right to an education -- it's as simple as that, isn't it?

Tuesday, October 11, 2016

The Mountains We Climb. Or, How to Be a Better Doctor

Dear Doctor,

I need a word with you. I want to tell you something about our lives, something about living with autism that isn't in your physicians reference books. I want to tell you how you can be the doctor we need you to be without ever taking out your prescription pad.

I want to tell you a little bit about the mountains that we climb, my boy and I.

We've been coming to see you since my boy was a newborn and you've known us all that time. Fourteen years. Two weeks ago my son needed a form signed so that he could participate in a swimming class and your receptionist pointed out that he hadn't been there for a physical in almost two years so we took the first appointment available.

Now, you know my boy is autistic and that he doesn't speak much, but we've been in your office enough so that you should also know that he has lots of ways of making himself known. But even if you didn't, I want to help you understand how to interact with a person who struggles with communication.

When we sat in the exam room with you, my boy was right next to you and I was further away, on the other side of him. You started off asking general, friendly questions, but rather than address my boy -- who is fourteen years old, after all -- you looked past him and spoke past him and asked me instead. Each time I pointedly turned towards Oliver and redirected the question to him.

"How's it going?" you asked me.

"How's it going, Oliver?" I asked.

"Good." he replied.

"So, anything giving you any trouble?" you asked me.

"Are you having trouble with anything, Oliver?" I repeated.

"No." he replied.

"So, he's in school, I assume?" you asked.

"Oliver, are you in school?"

"Yes." he said.

Do you see how that works? It's not as hard as you might think. Look at him. Talk to him. Ask him your questions and give him the chance to reply. Treat him like more than an object that is in the way of the conversation you want to have with me about him. He's your patient. If he needs help, or if you need help, I can offer support. But when you look past him and talk past him, refer to him as though he weren't sitting right there, you deny his person-hood and add to our burdens. Because in this situation I have two choices: I either find some gentle or not-so-gentle way to call you out for treating him like a non-person or I play along, get along, and contribute to the othering of my son. One choice exhausts me and the other wounds at least two of us.

Later in the appointment you looked past him again and asked me if my boy was ever depressed or if he had a good circle of friends and I you looked at you and wanted to laugh. Bitterly. "Both are about like you might expect when he's so often not treated like a person." You looked confused, my husband looked wary (he knows how I can get), and I wondered what you scribbled in your notes and if it contained the words 'passive aggressive'. 

Having autism is sometimes hard, Doctor. Not being able to communicate in the way the world expects is harder still. Supporting a person with both of these challenges can also be a struggle and maybe you've guessed by now that the hardest part can sometimes be other people. But don't take it too personally, you are just one in a long line of doctors who have treated my boy this way. It happens with other people, too, it's just harder to take when it comes from someone in the healing profession. Because we need allies. We need doctors who will help us troubleshoot often difficult issues and to be of service we need you to really see the person with the issues.

So Doctor, I want to share something with you that I hope you'll remember. Day after day my boy and I experience a thousand little episodes like the one I just described. In small and sometimes subtle ways my boy is told over and over and over again that he is different and therefore less of a person than everyone else. And if you put all the hard things about having autism in a pile and then made another pile out of the thousands of episodes like the one I'm writing to you about today, you would see that the mountain of advocacy that other people make us climb is the more exhausting of the two.

We take allies wherever we can find them, Doctor, and hope in the future you can be one. In the meantime, may all your mountains be small ones. We'll see you on the road to the top!

Very sincerely,

Friday, June 24, 2016

Never mind

Never mind that it's been raining buckets and the enormous pile of mulch I had delivered has moved in rivers through my yard like brown sludge. Never mind that I have a fantastically sour and sarcastic 11 year old masquerading as the boy I used to call Sami. Never mind that dark clouds of nationalism and xenophopia seem to be spreading, casting long, dark shadows that made JK Rowling tweet: I don't think I've ever wanted magic more. Me, too. Me, too. And maybe she's on to something. Maybe a bit of magical thinking, fingers in ears, la, la, la and a day (at least) of self-sanctioned media abstinence is called for.

Sometimes it all feels like just too much.

While I wait for the proverbial, metaphorical and actual clouds to part, here are some things that make me happy:

 Here's where you'll find me every morning, very early, my banjo on my lap, a tune in my head and coffee at my fingertips. I watch the sun come up, add rhythm to the birds tender morning songs and anchor myself for the day with a few minutes of solitude.

 I love this boy. All the things about him that make me crazy are the things that I will admire in him when he is an adult. This is the story I tell myself as I exhale deeply a dozen times a day.

 And this guy? He makes my heart sing.

Happy Friday, everyone!

Wednesday, June 15, 2016


Procrastinating about this blog is interrupted by vacation  - as usual this means camping, biking and swimming. Ah, summer! We've missed you.

And then, just like that, we are are home again and I'm making lists. Lists of chores in the wake of the camping debris dislodged from the car and dumped in the hallway last night. Lists of projects started and left half finished in the wake of the terrible, no good school year. Lists of things I want to do with my kiddos this summer. And finally, always finally, things I want to accomplish for myself. This comes last but at least it's there. One can dream. 

Wednesday, May 04, 2016

This Story Brought To You By Hope

I told you recently that I am advocating for our school district to develop a model for inclusive education that will help Oliver, and other students in our community, to thrive both in and out of the classroom. Sending my boy off to school each day, knowing that things are not best-case scenario, has left me feeling powerless. And as a mother, that is the last thing you want to feel. Advocating is something I can do. And so it is what I do. That is, it's what I do when I'm not worrying (which is a real strength of mine). I'll be honest with you: this year has been hard on me, on our family, and most especially on Oliver, who is the real hero of this story. He is the hero because no matter how difficult his days are at school, he is always ready to go the next day and try again. 

I have wondered why my boy is so willing to keep trying when I feel certain I would give up if the choice were mine. During the worst of it this winter, I found myself asking him daily if a return to homeschooling would be a better option. I couldn't understand what he was getting out of going to school and he could never really articulate an answer that made much sense -- just that he wanted to go. Partly I chalked it up to his nature: he comes by his stubbornness honestly. But also to his gentle, accepting way (a gift from the other, more relaxed half of his DNA). But I'm also reminded of something I learned, so many years ago, working with refugees in Thailand. I spent my off hours interviewing my students who would soon be resettled in the United States. I was teaching cultural orientation to the elderly, 55 and over, which makes me laugh for several reasons now, thankyouverymuch. They were primarily Hmong, most of them didn't read or write, they were used to cooking over a fire and had a rich tradition of hunting and gathering. They smiled and laughed. A lot. (Frequently at me). 

It was all fun and games till someone pulled out a camera -- then
the joke was on the lone, smiling American.
Even then, (my calendar says 20 some years ago) I was interested in understanding the stories we tell ourselves. How these stories influence who we are and who we will become, how we knit together our understanding of where our feet touch the earth right now, in this moment, with our expectations for where those same feet will carry us down some yellow brick road of the magical future.The marriage between the real and the ideal. And those refugees who were kind enough to share their stories and their dreams with me? They knew a lot about what is real. They knew about war and fear, frustration and boredom. They knew about what it was like to be caught in a system where you can't stay and you can't go back. And I think they also knew how difficult life in this far away country was going to be. Maybe they knew about the very high rates of depression and suicide of those who went before them. Surely they knew that an entirely new way of life awaited them. A life where chicken parts are sold wrapped in sanitized plastic wrappers so you can't even smell it or rely on your own senses to know what is what!  And yet, despite the odds being so firmly stacked against them, their stories always made room for the chance at a happy ending.They found a way to balance their very real struggles and fears with the only thing they really had . ... Hope. This was one of the great surprises in my life -- that even amidst the most difficult circumstances, there was joy, there was life and there was Hope.

For obvious reasons, this isn't much of an analogy. But years ago, when I was in the camps as a teacher, I quickly (quickly) found that most of the lessons would be mine to learn. I've never been a very good student, often taking years to learn basic truths, so maybe it isn't such a surprise to find that Oliver is now teaching me a very similar lesson and that it's one that I still have to learn. 

Sometimes in this life, you can't go back, and staying where you are won't work. The only choice that makes any sense at all is moving forward, holding tightly to hope, and telling your story in a way that leaves room for a happy ending.

Tuesday, April 26, 2016

What I am. ... What I'm not

This week, I am. ...
  • promising to make time for my banjo
  • bewitched by birds
  • loving alliteration
  • saying I love you 
  • wrapping up loose ends
  • counting down school days (31)
  • plotting another adventure
  • fond of root vegetables, roasted, with rosemary

What I'm not is:
  • getting the hang of the Crawdad Song
  • comparing myself to others
  • as patient as I should be 
  • as resilient as I could be
  • on top of the cleaning
  • hearing back from the plumber
  • quite convinced we need a dog
  • fond of Heidegger 

Sunday, April 24, 2016

Finding Meaning on the Internet and Other Stories We Tell Ourselves

Maybe you guessed that I'm making an effort to sit down and write more. It's hard. I tell myself I don't have the time. That I don't have anything to say to anyone anymore. That I'm not a real writer, it doesn't matter if I make the effort today or not. But I peel back the layers and there it is, the tender pink of afraid. Of self-doubt. This business of making yourself known is scary. Almost no one that I can reach out and touch in my everyday life knows about this little space here. Do you find that strange? Chalk it up to another secret that I keep. To change that, to truly own my words, is terrifying.

Yet. ..  writing in this space has helped me in ways beyond measure. Because of this space, I've connected with a powerful group of women who have carried me through difficult times, women I consider sisters. And I've connected with people who told me that I made a difference in their lives, people whom I might never meet but who find their way here and tell me: Thank you, I don't feel so alone, so afraid, anymore. And that right there? It means something. Maybe it's the only thing that means anything.

So this week, a week when I found myself flirting with this space a little more, I suddenly noticed an uptick in visitors, which made me both terrified and curious. How is it that suddenly The Internet knew I was back? A little sleuthing took me here, where I was surprised to find myself on a list of things to read this week -- which was really terrifying because those other people on the list? They are real writers. But I'm on that list, too, so maybe this is an invitation to think of myself more bravely. To tell myself a different story.

Then, a little more clicking led me to the blog-owner's TED talk, which you can watch here, and is all about Self-Doubt and The Power of the Personal Narrative. ... so! Is The Internet sending me a message? The Universe? But I don't believe in signs, only in our own clumsy meaning-making, and so that's what I'm going to set out to do.