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| Photo courtesy of Annika Leigh/Flickr Artwork by Emma, who has Down Syndrome. |
I have a story to share (don’t I always?).
It’s about a moment I’m not proud of. Actually, looking back, I’m kind of mortified by it.
I was a senior in high school. My friends and I had just spent the perfect day in D.C. wandering the mall admiring cherry blossoms. On the train ride home I was in an especially goofy mood. Sitting with my friends, I started talking to a water bottle I was carrying. Why did I start talking to a water bottle? I don’t know, it was 18 years ago. I’ve always been a strange person.
As I recall, one of my friends dared me to continue talking to my water bottle for the whole ride home. They all got up and moved a few rows back so I was sitting by myself.
Well, I suppose, not myself. I had the company of the aforementioned water bottle. Which I continued talking to, even as strangers sat by me (then promptly got up and moved). I vaguely remember the dialogue involved me planning a wedding for myself to the water bottle.
I know, I know.
Here’s where it gets uncomfortable.
My friends were sitting behind me, whispering among themselves and laughing. Periodically they’d throw bits of paper at me.
There was a woman nearby who glared at my friends.
She looked at me and asked, “Do you know those girls?”
I lied and said no.
She told me not to worry about the girls. That they were being mean and that I was special.
“My teachers tell me that, too,” I told her.
I know. I know. Asshole. I was an asshole. One of the biggest kinds of assholes.
The woman chatted with me for a bit then moved on. My friends stopped throwing whatever it was they were throwing at me.
I kept praying that the woman would get off the train so that I could go back to being … myself. But she rode all the way back to Vienna, which was our stop too. I waited on the train as she and my friends left. Then I got off and kept my distance until I was sure the woman was out of sight. At that point I reunited with my friends. They couldn’t believe I’d taken the joke so far. I couldn’t believe it got out of hand.
And what was the joke even? Looking back, I’m not sure. A seemingly normal teenager pretending to be someone with special needs, someone who could’ve been construed as mentally ill or mentally disabled isn’t much of a joke. It’s not all that funny. I know this now. I knew it at the time, too. The situation unraveled in front of me and I didn’t have the courage to back up and own my own assholery.
I’m sharing this story today because so often when I tell people I sub a lot in special ed, I often get this look from people. Like they’re impressed. Sometimes they’ll say something along the lines of, “I could never do that.” One person commented to me that special ed teachers were doing “God’s work.” There’s this sense that there are people who are “called for special ed” and then the rest of the world. That the people who teach special ed or who work with people with special needs were somehow born with more patience and more compassion than everyone else.
With all due respect to the wonderful special ed teachers I’ve worked with, this is kind of bullshit. For evidence, I will refer you to my opening anecdote. Clearly, I wasn’t someone born with some natural affinity for helping the mentally disabled. I wasn’t born with endless reserves of compassion, kindness or sensitivity to other people’s feelings.
I’m just the same old bumbling human we all are.
I know I’m just a substitute teacher. That’s different than pursuing a career in special education. But even the special ed teachers I’ve worked say they sort of fell into their careers by chance. One started out as a sub like I did. Another studied psychology in college and decided to try out teaching after a stint working in a psychiatric care facility. An adaptive PE teacher I was talking to recently said she’d studied nutrition but decided to teach after a stint working with Special Olympians.
The common factor for all these teachers is just exposure. As in, at some point in their lives or careers they happened to have spent time with individuals with special needs (whether by choice or by accident).
I’m not sure I would’ve said, “yes” to subbing in special ed if it weren’t for the fact that for seven years, I happened to live across the street from someone who was born with multiple intellectual disabilities.
Christie, one of my neighbors in York, has a big smile and an infectious laugh. She always loved seeing Snacks and has a standing date with Pat Sajak to watch “The Wheel” every night at 7. Her nails are usually painted and she likes to accessorize with bracelets or a Minnie Mouse watch.
When the girls were little, I used to spend hours on slow summer afternoons chatting about life with Christie’s mom, Georgia. We’d bond over the isolation of stay-at-home motherhood- though my dependent children were just babies and her dependent child was just a couple years younger than me.
I was so touched by Georgia’s relationship with Christie– she once told me, “Sometimes I don’t know where she ends and I begin”– but I could also see how much Chritie’s future weighed on Georgia’s mind. She and her husband, Scott are in their 60s. Georgia has had various health problems in the past several years. I know she loses sleep over the question of what would happen to Christie when they were unable to care for her anymore.
To be honest, it took a long time for me to feel comfortable around Christie. Maybe comfortable isn’t the right word. I think I just didn’t know how to interact with her. I didn’t know what she’d understand and I was fearful of making her nervous. I didn’t want to do or say the wrong thing. So, for a long time, I just didn’t do or say anything.
But over time I began to realize you interact with Christie the same way you interact with any person, you know? You say, “Hello.” You ask about her day. You find your commonalities. I just learned to talk louder (because she was hard of hearing). I learned to listen harder (to make sure I understood her). And I learned that even a short conversation could be a meaningful conversation.
Christie is a busy lady– she goes bowling, goes out to eat, she goes to a day program where she learns life skills and does art and has “club” in the evening where she meets up with friends. And, of course, she had “The Wheel.” When we became friends, she’d greet me with a smile and a hug, but if she had some place she’d rather be or something she’d rather be doing, she didn’t waste time chatting.
It was enough for her just to be seen, to be acknowledged, to be appreciated. And these are skills we’re born with as humans, right? Our instincts are toward companionship, toward community.
We’re born to seek connections with other people.
The thing is. when someone seems so drastically different than us, we get caught up in this idea that we won’t know how to connect with them. But what Christie has taught me– and the kids at school have taught me– is that you don’t need special training, you don’t need divine powers, you just need to be human and you need to see them as human and then you go from there. You meet them where they are.
It doesn’t take a saint to help a student with Downs Syndrome count by fives or help a student with Autism learn how to have a basic conversation. It just takes a willingness to see humanity in all its amazing beautiful shapes and forms.
And the ability to take a deep breath and maintain a sense of humor and a sense of groundedness when you’re around someone who might randomly grab your arm, or who periodically jumps out of his chair and runs down the hallway, or who’d much rather spend an entire day discussing dragon mythology than learning basic social skills. Or someone who doesn’t speak a whole lot, except to repeat the lyrics to “Hey Jude” or “Yesterday” or “We Can Work it Out” over and over. Or someone who bounces up to you and tell you he’s going to eat your brains. Or someone who can’t stop herself from swearing loudly in the middle of their English class.
I see bits and pieces of myself and people I love in all of these students. So I can’t help but like them, even as they baffle me and sometimes annoy me even. Because they’re human and I’m human and none of us are perfect.
A couple years ago I co-wrote a story with my friend Ashley for the York Daily Record about how adults with special needs in Pennsylvania and their families are often left in limbo waiting for critical services. The parents I interviewed were in their 60s and 70s (one was in her 80s). They’d been caring for their special needs children for decades and just wanted to ensure they would be in good hands when they could no longer provide for their children. In Pennsylvania, and I imagine in most states, the resources devoted to individuals with physical and/or intellectual disabilities are stretched thin. The burden of caring for people who cannot care for themselves often rests on the shoulders of willing family members, paid caregivers, overwhelmed state agencies and nonprofit organizations.
The Philadelphia Inquirer is running an in-depth series related to the story Ashley and I wrote title “Falling Off the Cliff.” This excerpt caught my eye:
“Parents of adults with I/DD followed Christina’s case closely, and they called to share their own horror stories about caregiver abuse and agency incompetence. About political and public indifference to the needs of those with I/DD. About the lack of compassion and resources for elderly parents who have become too old and frail to care for their aging, impaired children. About the sudden elimination of educational options when a disabled child turns 21, a descent so dramatic and universal that parents call it “falling off the cliff.”
Their stories could fill a book. But each would only nick the surface of a crisis that is barreling toward us like a tsunami: We will soon have more intellectually and developmentally disabled adults living in this country than at any other time in our history.
Advances in medical care have allowed kids born with Down syndrome, for example, to live twice as long as they did just 20 years ago. And the explosion in the number of children with autism — one in 68 children are now diagnosed — means we’ll soon have a vast population of adults in need of services like those Christina’s family had hoped would keep her safe.
Add these numbers to those of children born with the two other most common roots of intellectual disability — Fragile X syndrome and fetal alcohol spectrum disorder — and we have a looming social, economic, and moral crisis. What will we do about, with, and for these vulnerable adults and the families who struggle to care for them? And how much are we willing to pay for it?”
That adaptive gym teacher I mentioned earlier told me she was out the other night talking with some guys at a bar. One of them asked what she did and when she told him, his response that was like the garbage collector of teachers– just working with all the rejects. The teacher swiftly corrected him without the use of expletives or physical violence, which I think, under the circumstances, was pretty admirable. Because really? REALLY?! Comparing a whole person to trash? Comparing somebody’s child to refuse? How is this still the world we live in?
I wanted to write about this today because the story of people who are often overlooked and marginalized is our story. It’s a story we all need to take ownership of. It’s a story we all have to play a role in. Not just the parents of these children. Not just their overworked teachers and instructional assistants and therapists and caseworkers. Not just the nonprofits who are gracious enough to extend services. No, all of us. We all need to be willing to look past our obvious differences and search for our obvious commonalities.
That’s not to say that everyone needs to pursue a career in special education or occupational therapy or social work. I think we can start to make a difference just by acknowledging these families in our communities and being friendly. I get the sense that having a child or a sibling in this population can feel so isolating. So help them feel less isolated, you know. Say hi. Start a conversation. Get to know them. Just offer your time. Then go from there.
You’ll grow as a person. You’ll find grace and gratitude. You’ll deepen your wells of compassion and empathy. You will form relationships with people who will make you laugh and invite you to see the world from a new perspective and who will love you despite your many flaws.
You will learn that despite what might initially seem like massive differences, that there are still universal truths we all hold.
The middle schoolers I hang out with have taught me so many useful things. Like:
- Mondays are always tough no matter who you ever.
- It’s never not a good time to dance.
- Beatles forever!
- If you’re having a rough day, sometimes all it takes is looking at a picture of Shawn Mendes (look him up, I had to) to cheer you up. You could sub out Shawn Mendes with your celebrity crush. But I know at least one student who would think that is unwise.
- Making farting noises on your arm is never not funny if you’re the one making the farting noise. If you’re the rest of the class, it’s the worst.
- The best moment of the week might just be sitting in your teacher’s pickup truck at the end of the day.
- When learning about invertebrates, SpongeBob SquarePants is a surprisingly useful reference (Patrick the starfish! Gary the snail! Mr. Krabs! Squidward!)
- It doesn’t matter whether they’re a seventh grader in a contained classroom (kids who need additional learning supports) or a seventh grader in mainstream classroom (kids who don’t) they’re all generally spazzy, obnoxious, prone to inappropriate outbursts, excitable and kind of ridiculous in the best ways possible.
My point in all this mess is that you don’t have to wait for some sign from the universe or some call from the great beyond to start seeing people as people. I doubt the parents of these special needs kids felt they were suited for the job of raising their child with Down Syndrome or Autism or other intellectual developmental disorders when their kids were born. They were probably terrified, as any of us would be, in the face of the unknown. But it’s not as if they have a choice. So they adapt. They educate themselves. They open their hearts wider than they thought they could go.
I think we can all do the same. We’re always at our best when we serve those on the fringes. Those who are marginalized. And maybe serve isn’t the right word– because that somehow implies a one-sided transaction. It’s not. To coin a phrase from Stewie, we are all “richer for the experience.”
Just go out and be kind. Even if you were the person who 18 years ago impersonated a person with intellectual disabilities on a Metro, for instance. Be like the woman on the train who stood up for the asshole (even though she didn’t know that person was an asshole).
We’re all called to love. So go forth and love.