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,

Sunday, October 09, 2016

(Not) Welcomed, (Not) Included in Virginia

This year, like many other mothers, I attended an Open House at my son's school before the first day of classes. Even though my son was entering 6th grade at our local middle school, this was a novel thing for me to do because until this year he had been home schooled. I approached the evening with some trepidation, not quite sure what to expect. Another boy in our neighborhood, one year older, volunteered to go with us. He said he would show us around, help us figure out how to navigate from class to class, help us find my son's locker, and introduce him to the teachers. I gratefully accepted.

When we arrived at the school there was a little bit of mix-up with my son's schedule that was straightened out in the guidance office. While we waited, a very friendly counselor asked my son if he had any questions and made a real effort to help him feel at ease. She talked to him about the cross-country program and helped him think about which instrument he might like to play in the band. She told him about the school play and suggested he either try out for a part or help behind the scenes if he was interested.

Later, I followed my son and our neighbor through the building and watched as teachers and administrators stood in the hall greeting kids by name, giving them high-fives and asking about their summers. There was a jovial, welcoming energy throughout the school and I could see how it felt like a little community. Kids who hadn't seen each other all summer gathered in small groups catching up and looking at their schedules to find out who would be in which classes together. Parents and teachers greeted each other warmly and talked about the year ahead. Without a doubt, I knew my son would be welcomed here. I had worried about how he would manage in a classroom environment after having been unschooled for so long, but the teachers seemed engaging and eager for my son to join their classrooms. They told me about all the fun activities they had in store for their students. They spoke of field trips. They set my mind at ease when they described the wide diversity of students in their classes which include a large number of immigrants and refugees in our area. I began to see how my son might fit in and thrive here. I could see how he would be a part of something, how he would begin to forge the relationships that would imbue the next years of his life with richness and texture.

You might think that I left that event at the school feeling relieved and excited. And, in a small way, I did. But the greater emotions were sadness and grief.

You see, this was not my first experience in this school. My older child, who has a disability, had attended this school for nearly three years. And during that time no one had ever asked him if he would like to join the band or what instrument he might like to play. No one ever suggested that he might participate in an after school activity. They never asked if he might enjoy helping with a play or, for that matter, even attending one. He didn't have a locker. He never once stood in a group of his peers in the hallway. There were no field trips or school dances unless I consented to go along as his chaperone.

Every interaction we had with teachers took place inside a conference room where faces were veiled with trepidation, where all the things my son couldn't do were considered barriers to even the most basic participation.

Over the three years in which my son was enrolled in this very same school, I spent countless hours meeting with teachers and administrators advocating on his behalf. I spent evenings and weekends adapting and modifying coursework. I bought apps that would allow him to participate in algebra and Spanish, loaded them onto his communication device, and taught his teachers how to use them. I lobbied at the district level for more teacher training so that they could get the support they needed.  I participated in our division's new Strategic Planning Group for Inclusive Education.

I spent so much time advocating for my son and other children with disabilities that one principal joked that he thought I worked for the school district.

After three years at this school my son graduated from eighth grade, ready to move on to the high school, having only completed three classes. And still, I counted our time there as a success. I believed that the lessons his team had learned about the supports needed to help him be successful in the general education classroom were the building blocks for a more rigorous education.

It wasn't until my younger son started school that I realized how dismally we had all failed.

I knew, of course, that inclusion was about more than being able to participate in the general education classroom, but until I walked those same hallways with my son who does not have a disability, I didn't realize how much my other child had been denied a sense of belonging.  I didn't realize how much he had missed out on by not walking the same hallways with his peers, how few people knew his name or anything about him. Advocating for extracurricular activities and programs felt like just one more hurdle to overcome and I didn't realize what I let go of when I thought just being allowed to attend a science or math class was enough. The promise of relationships and experiences, of a community of support, wasn't just denied to my son with a disability, it was denied to our whole family.

I had no idea how much we were excluded until my child without a disability was welcomed so openly.

I had no idea how much we were on the outside until I saw what it looked like from the inside.

My oldest son is now enrolled at the High School, although 8 weeks into the school year he has yet to attend a single class.  He missed out on Diversity Day when students and staff wore the clothing representing the many culture represented at the school. We got the pictures in an email. He didn't get the chance to go to the homecoming dance or participate in any of the related school activities. He didn't get his picture taken for the yearbook.

Except for a few administrators, nobody at the school knows his name or that he should be in school and isn't. He isn't missed.

It's difficult to be missed, after all, when you were never included in the first place.  And that is a grievous failure for us all.

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, June 01, 2016

Memories. Or, Waylaid and Forgetful in IEP Season

I started this post weeks ago, before I got waylaid by the sticky emotional muck of IEP season. Maybe you know something about that. Since then I've been yearning to get back here, to this space, to the habit and practice of writing.

When I sat here last looking at this blank space, on May 7th, I had an idea about something I wanted to say and got started with a few sentences about the stuff of memories. But now, ironically, I can't for the life of me remember what it was I meant to say. So to save this from going into the unfinished draft pile, I'll just commit the beginning here and call it the end.

To get to whatever it was I was getting to, I had to begin by talking about RT and so I wrote:
It occurs to me that someone new here might not know that RT -- that is: Resident Teenager -- is the oldest member of our kid brigade. And in fact, RT is neither Resident or Teenager any longer. He is all the way into adulthood. Graduated from college. Making a life away from us in New York City. When I think about wanting to hold on to these childhood moments that I'm smack in the middle of with the other kids, thinking of RT reminds me that it's no joke: his childhood is a big blur to me.
Maybe it's different for other people, but I somehow didn't manage to collect a whole catalog of memories from his childhood the way I feel I should have. You know how many of those long, tedious days that you live through as a parent? The ones that feel just endless? Endless strings of endless days, sometimes. You imagine that they will be etched into your brain for the rest of your life. But they won't. They'll pass and be gone. Oh sure, if you really think about it, you might remember the (many) repeated attempts that he made to educate you on the finer points of Pokemon, but you won't really be able to picture the ragged nails on slender fingers holding a card out for you to admire or how bright his dark ebony eyes shone when he did. The things we notice about our kids that make us suck in our breath, jolted by an electric kind of love, aren't the sort of things captured in a photograph. They are as ephemeral as the slow smile that crosses a boy's face, a shadow of his father, as he spins a tall tale. As tender as the pink of new skin on a scabby knee.

That's all she wrote, friends. I wish I knew where I was going with it but as I head into another IEP meeting tomorrow maybe it's enough to remember that this, too, shall pass and that these are the days I will miss, all rolled into one.

Friday, May 06, 2016

Interesting This Week

Wow, the Internet is a cool place, isn't it? I love how it allows me to make connections with people and ideas. It's like magic a little bit and shapes my thinking in so many ways. It's like the best library you ever visited only better because you get to check out people and perspectives. Here's some of what I found interesting this week:

Moxie: Let Down Syndrome Define You -- by Meriah Nichols

The way that your extra chromosome expresses itself is a part of what makes you, you.

It’s more than the physical pieces – your lovely eyes, crinkly ears, petite size – it’s the way your brain works. It’s a part of how you receive and process information. It’s the way you see and interact with your world.

Down syndrome is like the feet upon which you stand – it’s a part of you. It can carry you forward, it can move you in new directions if you allow it.

After a Big Seizure and Before Dressing -- by Elizabeth Aquino

It's difficult to defend the integrity of another person who can't do it for herself. It wears on the soul. The wearing, though, is like clothes. A garment to mask vulnerability. The wearing is from the outside, not her. It's from you. We shouldn't have to defend or even wear the clothes.

Under the Table - The Importance of Presuming Competence | Shelley Moore | TEDxLangleyED

Watch this. I mean it. Really, this will be the best 15 minutes of your day. I've only ever sent two fan letters in my life and one of the was to Shelley. I've watched it 3 times already and now that I'm thinking about it, I'm going to go watch it again. See you there!

The Hackensaw Boys on NPR's Weekend Edition

That other fan letter I wrote? It was to these guys, a band with local ties, bringing music and dancing to the residents of this little green house for years. The music of the Hackensaw Boys was the first that made Oliver get up and dance so I wrote and told them of the JOY and even now, so many years later, when I see them Ferd will ask: "How's Oliver?" I love them so!