Global Crisis

In times of stress one often turns to faith for guidance. But my connection to organized church was struggling. Peter could not handle the stimulation of church. When it came time for the bells to ring during Mass, Peter would cover his ears and scream. In an attempt to help Peter understand the bells, the pastoral associate let him touch them after Mass. But the next Sunday the fear response was the same. One thing was clear: The bells I heard in my ears were not the same sound Peter was hearing.

So we bought Peter a headset he could wear during Mass. It was not plugged into anything but something to dull the senses. We had many looks of disgust from parishioners who I can only assume thought Peter was listening to an iPhone. But I was not going to let other people’s unawareness keep my family from Mass; Peter’s fear, maybe. One Sunday we were in the car on the way to Mass when Peter started screaming, “Mommy do you have my headset?” On a scale of 1 to 100, his anxiety at that moment was a 99. I was forced to reflect. What was I doing? How is Mass helping Peter? What place of horror and fear is he associating with church? What was he learning about his parents and their ability to keep him safe? What was I really asking of him?

First, there's the headphones and the states.  I also noticed a similar situation in this piece on Judaism and special needs.

 My own family left the first synagogue we joined because we felt unwelcome bringing a baby to Shabbat services (we got narrow-eyed old-lady hissy faces if Josie so much as clucked) and no one welcomed us to the cliquey family service. I can only imagine how much less welcoming the shul would have felt to a family who had an older child with special needs. In our current shul, however, such families are welcome, and the general vibe is infinitely more inclusive. Embracing difference benefits all Jews, not just Jews with disabilities.

Notice how the headphone issue and here the description of the "clucking" are both about using hostile stares to reinforce social norms, norms to which these children cannot conform. That's the kind of microaggresion I wrote about for the New York Times. These little pains hurt, when stacked on each other.

Second, though, and back to Werdel, is the significant evolution of her thinking. She moves from trying to make it possible for her son to do the things she finds important, to trying to see the world through his eyes. This is vital and so hard.

Werdel ends with a plea for inclusion:

I no longer pray for normalcy. I am starting to believe that praying for and including that term sets up a system that by its nature demands exclusion. Instead I pray that Peter and I will grow more relational. I want Peter to feel love and express love. And I pray that one day Peter and others like him will be met by a living church that meets all with relational community and unconditional love.

I always like to talk about inclusion, not same-ness. That's the pathway forward for churches that want to do better, and of course there are many people in all faiths who are, in fact, trying to do better.

In the meantime, though, I leave you with this: If your church is not explicitly and pro-actively (not reactively) inclusive, it is betraying any claims to universality.

Over the last few months, I have been focusing more on "the cliff," which is a way some disability advocates refer to turning 22 in our system. Until then, special education provides support for school, training, and even certain kinds of therapies and other activities throughout a child's life. At 22, nothing. Work is hard to find. Programs are rare and expensive. Many kids just go home to their parents house or, if not possible, into a home, and that's that. They've fallen off the cliff.

But lots of people are working to change those realities, in all sorts of ways, and I am writing about some of them (including a piece on college to be published in August or September for the Chronicle).

Various people in the business world are trying to help. Here's a really great story, but not in the casual rah-rah inspiration way, about the former head of operations at Walgreens and his attempts to hire more people with disabilities at the stores and their distribution centers (the goal was 1 in 10 with disability). Randy Lewis is the father of a son with autism and his goal was not just to do what many retail stores do - hire people with disabilities to clean and move shopping carts and the like (which is fine, but not all that's possible), but rather:

Walgreens had previously employed disabled people to do “ancillary rather than mission-critical work”, cleaning for example, but Lewis wanted to do something more. “We wanted an opportunity to bring people in as our own employees,” he recalls. That opportunity came with the building of a new distribution centre; larger and more automated than any the company had owned before. Lewis’s mission was to use that centre to allow the company to hire greater numbers of people with disabilities. It is now Walgreens’ most efficient site, and 40% of its workforce is disabled.

Similar buildings have opened around the US, but Lewis says although automation has helped, it isn’t the true reason why hiring people with disabilities has spread throughout the company. “The automation is what gave us the courage to do something different,” he explains. “It didn’t make it happen, it made us believe it could happen. We could do this anywhere.” 

 Lewis had a vision. I am so skeptical of corporate mentalities, the kind of breathless lauding of business "visionaries," and other aspects of the way media talk about folks in the corporate world. And yet:

We never lost sight of the fact we are a business, not a charity: this had to make business sense,” stresses Lewis. “We had to hold everyone to the same standards and have a completely inclusive environment. When I presented it to the board, I said this was going to be the most expensive building we had ever built, which they didn’t like, but I said it was also going to have the best ROI, be the most efficient and be built in such a way that one-third of the workforce would be disabled.” The board had one question: ‘What if it doesn’t work?’ Lewis’s response? “If it doesn’t work, we’ll readjust. That’s what we do in business all the time: make mistakes, learn from them and move on. We didn’t say: ‘We’re going to have great performance or hire people with disabilities’; We said: ‘We’re going to have great performance, we’re going to have a positive impact on the community and change the workplace for everybody.’”

The piece continues like this and is worth reading, just to get a sense of the possible and how to talk to folks in business about employment.

One of the things I really like about the piece is that a number of Lewis' statements embody the concept that I call "inclusion, not same-ness." Inclusion requires creative thinking, it requires seeing possibilities that emerge from changing what we consider "normal," it involves letting people do things that you might not let another do. Often, unexpected benefits follow.

For example:

“We haven’t found a disability we can’t employ, because everything is on a spectrum,” says Lewis. “We have one person with epilepsy who has 17 seizures a day. He wears a helmet and people know to make sure he’s in a safe place when he has an episode. He couldn’t find a job until he came to us.”

This inclusivity has had a positive impact on engagement. Whenever a new piece of technology is implemented in a distribution centre, Walgreens expects some disruption, so with this high level of automation, it was expected things would go wrong. They did, and from July to November everyone in the centre was working overtime and Saturdays. “The preconception we had about people with disabilities is that they wouldn’t be able to be very flexible or work overtime,” says Lewis. “But when I went to talk to the team members, they only had two questions: ‘how are we doing?’ and ‘what can we do to help?’ That’s when I knew we had a special building.” 

 A helmet. A community. And a man has a job. Here's another piece.

Safety costs were also lower for people with disabilities. “Fears about more accidents had come up, but we found deaf forklift drivers – who many companies won’t hire – are twice as safe as someone who can hear,” says Lewis. “If I could give everyone a piece of advice, it would be to put plugs in the ears of their forklift truck drivers.”

Deaf-ness as advantage. And what I like is that these advantages are not predicated on disability as a superpower (the Rain Man phenomenon), but just be opening one's mind to the possibilities of inclusion.

So cheers to Walgreens (for all it's fleeing America to avoid paying taxes, 2 years after begging tax breaks from Illinois).  May other companies follow in its wake.

Not Nico's Actual Bus

"It's so sad when people have special needs."

A caring, sweet, 4th-grader said this to me at the bus stop a few minutes ago. My son and I crossed the street, running and laughing, happy. Then he asked me to go see a dog that was being walked across the grass, I said no, we had to go get in line for the bus, so he said no to me, and then pouted. Nico is really developing his pout lately.

The girl, M, came over and reached out her hands to Nico asking if she could help. He said, passionately, "No!" Then she turned to me and smiled and said, "It's so sad when people have special needs."

It's one of those moments when, as a parent, words fall with a kind of physical force. It's not that they hurt, at least not in this case, but for me my whole body tenses in these kinds of interactions. I know, or I suspect, that I'm hitting a moment in which I might shape language, perception, action, reaction, and more - not just for my son, but for anyone this child interacts with who has special needs, and her friends and family.

If I handle it right, I hope, I might help build a more inclusive society and I might even manage to erode the gap between help and friendship (seriously, follow that link. It's really interesting).

I said, "I don't think having special needs is sad. I think it can be sad when people with special needs don't get the help they need, and even worse when they don't have a good community of friends and family around them."

M. thought about this and said, "I used to help my grandpa. He was in a wheelchair because of the war and his leg."

I replied, "Exactly, and imagine if he didn't have you and your family and his friends not just to help push his chair, but to be his granddaughter, to be his friends, and to make sure he has what he needs. And if our community didn't build wheelchair ramps or automatic doors, so he couldn't have moved around."

She nodded. Then the bus came and I had to get my surly boy onto his feet and onto the bus, which he did with only mild protest, surrounding by his aide and three girls, M, F and H, with G waiting for him on the bus.

I'm not quite satisfied with my answer, but I'll keep working on it.

Two other stories about inclusion and the girls who go to school with my son. And yeah, it's pretty much the girls, a sign of the ways that girls are pushed towards caregiving early, but that's another essay.

I've written about H before, back on the first days of school, when she included herself with Nico in a way that made me weep. She comes over and has playdates sometimes, and while she and my daughter have a beautiful big-sister/little-sister relationship, she's never satisfied just playing with Ellie for all my daughter provides her with an imaginative hyperverbal playmate for their games. Instead, every few minutes, she breaks away to go find Nico and see if she can bring him in. Sometimes, it works. On Sunday, the three kids sat huddled in a corner of couch passing two ipads around, giggling and happy. It was so powerfully inclusive, especially given that Nico had refused to participate in my daughter's birthday party earlier that day (too many kids, too loud, too hot).

F, on the other hand, lives across the street, but I haven't really processed her relationship with Nico. She's quiet, or at least a bunch of the other neighborhood kids are really loud. Two Fridays ago, though, Nico's aide wasn't on the bus and F was one of the girls who volunteered to help. It didn't go well at all, but everyone made it home safely.

Monday morning, though, I saw F with a plastic bag with little rectangles of paper, pencil drawings, and words written on it. I asked her what they were and discovered that she was trying to replicate one of the communication systems that the teachers and aides use for Nico. They carry a bunch of communication cards (bathroom, thirsty, desk, marker, etc. They look more or less like this.) to supplement the use of an Ipad-based communication program. F decided to make her own cards. As near as I can tell, no one told her to do this or helped her - she just observed what the teachers were doing and decided to generate her own assistive technology.

So, M, thinking more about the community in which my son lives, I can say pretty strongly that it is not so sad when people have special needs. Thanks to you and his other friends who are trying to do their best to create a more inclusive society. I'll do what I can to help you.

I'm off to a workshop today, but wanted to offer a few quick thoughts on a great series of videos.

Scope, a British advocacy group, has made an outstanding series of videos that are fundamentally about inclusive society - how to you shake a hand that's not there, how do you talk to people in a wheelchair, etc. What I like about it is that it acknowledges that inclusion is hard and disability often makes social norms confusing. Ok, they all say, now you've been awkward, now what?

The answer turns out to be - acknowledge the awkward, then change it and do better.

You can see the videos at the link above, but Vox has a nice write-up and a few addendums on language.

Videos below. What do you think? Using humor is always dangerous, but my gut reaction is that these hit the marks pretty well.