Segregation in MN

Minnesota remains highly segregated when it comes to adults with disabilities. Read this new Star Tribune report.

Segregated Proms are Segregated

A segregated DC school throws a segregated prom and applauds itself for its segregation. Everyone in this story has nothing but good intent. They are working hard for their students. But this is the wrong attitude.

“If we had these students in a conventional school, they’d probably sit in a corner and not engage, or they’d be made fun of,” says Aimeé Cepeda, principal at River Terrace. “Here, they get to celebrate with their peers.”

That's a justification for intensifying segregation, as David Rosenblatt said:

This is a RESULT of segregation & stigma, not a justification for more segregation.

— David Rosenblatt (@DaveMRosenblatt) June 13, 2017

Disability segregation does sometimes happen in our educational system (and housing, workforce, etc.). We should always be working to turn it back towards inclusiveness, not celebrating our segregation.

Jeff Sessions is Anti-Inclusive Education

All of the Trump cabinet appointees are likely to be, in my estimation, bad choices. There are few elite Republicans whose position on the function of the federal government I share in any way. That said, there are two clear types of appointees.

1) Those who are eager to use the coercive power of the states.
2) Those who do not believe in the function of the department they would run and who intend to destroy that function.

DeVos (ed), Carson (HUD), Price (HHS) are type two.

Flynn, Clarke, and DOJ nominee Jeff Sessions are type 1. Still, Sessions will also have the power to act in type 2 ways, undermining the oversight role of the DoJ on governmental functions he dislikes.

The Autistic Self Advocacy Network (ASAN) put out a statement about Sessions highlighting his thoughts on inclusive education.

For the past several years, the Department of Justice has actively enforced the Americans with Disabilities Act and the Olmstead decision, resulting in increased community inclusion for disabled people across the country. But Senator Sessions has suggested increasing the segregation of disabled students in public schools, calling the inclusion of students with significant disabilities “the single most irritating problem for teachers throughout America today.” We have grave concerns that under Sessions, the Department of Justice would not protect the rights of disabled people and other marginalized populations.

Olmstead enforcement from the Obama Justice Department has been important (and underreported in terms of federal policies that change lives), but the Bush Administration - and the family of the man who signed the ADA generally - had genuine concern about disability rights and improving the lives of disabled Americans.

UPDATE: Huffington Post reports on Sessions' attacks on IDEA. Blames inclusion on a "decline in civility and discipline" in schoolrooms.

Sessions, it seems, does not.

Stopping him is one of the first fights to come. It's a fight we can win. Call your Senators. Write. Organize.

Inclusion Denied in West Virginia

(Reposted from 9/16/15 on a defunct part of the site)

In West Virginia, a young man with Down syndrome is being told he can't attend the inclusive school near his house. 

It all started when Roy's parents noticed he was becoming more disinterested in school while attending Magnolia High School during his freshman year.

In Wetzel County students with "severe" special needs are to be placed at Magnolia, regardless of where they live. The Stevens family lives within the territory of Hundred High School, but the school system believes Magnolia is better equipped to deal with students with special needs.

Magnolia is about an hour drive away from the Stevens' home.

Last year Roy's family was granted a temporary reprieve, which allowed him to attend Hundred. At the time, Roy was having trouble getting up early enough to catch the bus to Magnolia. His family said he ended up missing school on quite a few occasions, despite his flexible attendance schedule. Karen would take Roy to school later in the day on some of these occasions, which was two hours round-trip.

While attending Hundred High School, Roy flourished. He attended more than half of regular education classes, performed hands-on work, and joined clubs and activities, including the school band.

"He made so many friends, and now, when he sees people in town, his friends know him, they're not afraid of him, they tell their parents about him, and their parents know him," Karen said. "And as Roy transitions into adulthood, that's the greatest thing for him where he lives."

Every time you read a story about a child being denied a FAPE in LRE (Free and Appropriate Public Education in the Least Restrictive Environment), remember there are lots more people like Roy being denied as well. 

West Virginia - Wetzel County anyway - is structurally designed to make a less independent, less included, adult population. 

We've got to fight that. 

Is Church Only for the Neurotypical?

In America, an English-language Jesuit magazine, Mary Berth Werdel (a prof at Fordham) has a powerful essay about church and her autistic son. She begins with diagnosis and all its complexities, a story I've heard many times from many parents (which doesn't make this story less important or well-written!), but I really want to focus on the church issues.

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.

Inclusion, not Same-ness: Walgreens and the Disability Cliff

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.

Tale of Inclusion: Down Syndrome and Violence at the Play Area

Yesterday I got a comment on another post from a parent who ended up on my blog. The short version is that at a public play-place her son was hurt by a child with DS and she didn't know what to do about it, because how can you blame a child with DS for anything? I offer the comment in full and then my response. 

I need advice. I have a four-year-old son who does not have Down Syndrome. Today, we went to a restaurant that had a play area. My son is big (tall and muscular) for his age, and I've always been worried about his playing in the play area there in fear that HE might hurt someone. Today at lunch he came screaming and crying out of the play area. It took five minutes to calm him down to the point to figure out that another child hurt him.

At this time, I saw a mother enter the play area and then come back out (by herself) but look at me as if I were a horrible parent because my child is screaming in the restaurant. So, after I finally calm my son down enough to find out that another child pinched him on the cheeks hard (and also I later found out from another child that the same child had first hit my son on the chin...and on the way home discovered that the child had pulled my son's legs out from under him), I decided to go find the child, explain to him (possibly not in the nicest tone of voice) that hurting my child is not acceptable, and then tracking down the child's parents (by the way...the woman who stared my child and me down for my son's screaming was the boy's mother and she knew what he did and still did nothing to stop the child) to explain to them that their child's behavior was unacceptable...it turns out the child had Down's. The one who violently hurt my son.

Of course, I couldn't take action against the child or the parents, but how do you explain to a four-year-old who only understands that he was hurt for no reason? (By the way, my son did not behave with aggression to the child. Several other children and the parents who were sitting in the play area--the only reason I was not in there physically was because there was no more room for parents--substantiated that the other child turned violent toward my son for no reason.) How is anyone (whether they "know" what they are doing or not...and this child knew that what he did to my child was wrong) allowed to do violence to another? How is it more acceptable for some?

Because I even knew it was "taboo" to blame a child with Down's for his behavior. I hate to say it, but I'm furious with the parents because they knew that their child was violent, knew that he was the one who hurt my son, didn't remove their child from the play area, didn't apologize to my son (but instead looked at me as if I were a horrible mother and my child a horrible child because my child was screaming because THEIR CHILD HURT MY CHILD).

DEAR READERS PLEASE NOTE - The person with the comment and I have exchanged emails and I anticipate she will read this blog. If you are rude in comments, I will simply delete your post without warning! It's fine to disagree thoughtfully, I'd love to hear better ways of framing a response, but no rudeness to someone genuinely looking for help. 

Dear S.

I'm really glad you wrote me and want to have this conversation. It's important. When my son was three, the idea that he could just go into a play area and be around the other kids as seemed impossible. How could he control his behavior? What if the other kids didn't understand his limitations? Most of all, what if he got stuck in one of the big climbing contraptions? Could he even physically, ever, go up those ladders and down those slides?

Now he does it all the time. I'm so proud of his physical and social development, but I'm still always worried something will go wrong. So far mostly so good, but your story reminds me of the challenges.

Here are my two key points:

First -  Having Down syndrome does NOT mean one can hurt other people without consequence. That is exactly the opposite of the message that I would hope to convey. I actually think it's extra vital that we make sure that our children understand the consequences of their actions. It's a harsh world out there for people with disabilities, and learning control is vital to inclusion. The problem is how. How do you make the connections between actions and results apparent with someone who has speech/developmental delays? There are solutions, or at least ideas, and I'll offer them below.

Second -  I was struck by how often you talked about feeling shame. Other parents were looking at you, you felt like a bad mother, but you know that you didn't do anything wrong. It's not a good feeling. Here's something to consider - That shame you were feeling, the shame that the other parents are looking at you and blaming you, parents of kids with disabilities live with that shame all the time. It can get really oppressive, making parents like us self-isolate. We just stay home, keeping our kids out of the grocery store, playground, or even school.

I've felt it, I feel it all the time when my son acts in a non-typical way, or his nose is too runny and people are judging me, when he shouts in the barber shop, when he dances randomly in the mall, I encounter so many micro-aggressions on a day-to-day basis that you'd think I'd be used to it, but no. I still feel shame.

So I'm asking you, as a parent, to think about that emotion you felt, to know that you were in the right here, but to approach those parents with compassion and empathy.

So now what? I operate under the principle of inclusion, but not same-ness. My goal is to have your son and the boy with DS included together, safely, in the play-space. That doesn't mean consequence-free violence, but it also doesn't mean that you can respond to the incident as you would for other kids, because the usual methods of parental reaction - yelling (sadly), time-outs, removal of privileges - might not have any meaning. Yeah, a parent can take away a toy or fun activity from a four-year-old with Down syndrome, but depending on their developmental level, it might not have any meaning. How do you connect the consequence to the act of hurting your son? That's the challenge here.

The first step is to understand what might have happened. What does the violent behavior - pinching, tripping, hitting - mean in this case? Does it come from anger? Aggression? Confusion? Fear? Sometimes it's from over-stimulation. Or, and this is pretty common, people with Down syndrome use physical responses as an alternate form of communication. When you don't have words, hitting or hugging communicates perfectly well from the perspective of the child, and it might not even communicate what you think it does.

People with Down syndrome are not any more likely to be violent by nature than anyone else, in fact probably less so, but they do often have boundary issues. Maybe the parents knew their child was violent, as you say, but maybe not. We - parents - are often surprised by our children's response to situations. I knew a boy who liked to grab hair and pull - it was an interesting texture and sensation for him. My son often pushes hands away, sometimes slapping, when he's angry or frustrated. One time my son Nico was so afraid of splashing water that he reached out and grabbed my face with his hand, cutting the skin with his nail, terrified. That's violent, but different than fighting from aggression or anger, or from knocking someone down because you're playing ninja and don't have good control.

The goal here is to communicate. We don't want four year olds, or fourteen year olds, hitting as a way of expressing their frustrations. On the other hand, typical interventions - yelling, time outs, taking away privileges - might not have a lot of meaning for the child with Down syndrome. When my daughter misbehaves, we talk about it, we make sure to verbalize a clear cause-effect relationship. When my son, who has DS, misbehaves, we have to be more creative.

There are intervention strategies for kids with Down syndrome who are "challenging." You focus on skills. You focus on communication. You find positive reinforcement rather than punishment (which works better for all kids). 

One technique we've used with Nico is the social story. They are picture and word-based behavioral stories that try to make sure a person understands a situation and the consequences of actions, to help them make better decisions in the future. They use a lot of positive affirmation and perhaps one or two pieces of instructional advice to try and achieve better response to situations.  Therapists make them for their patients, though parents can make them as well. Here, for example, is a story about playing nicely with a brother, easily adapted for a public playground. Here's another. Social stories have worked wonders for my son, but each kid is different.

So what might you do if you see the parents again, or if something like this happens again?

Comfort your son and comfort yourself! I'm sorry that people looked at you as if you were a horrible parent, but don't let them get you down! People judge all the time and are usually clueless about context; ultimately, the opinions of strangers aren't that important (to me anyway). Remember that no outsider ever has a clue about what's going on in a family and try to just do what's right.

Engage the parents. Tell them what happened. I would be devastated to know my son hurt another child, and so might they. Remember that raising a child with special needs is pretty difficult, so once you have calmed yourself and your child, engage with empathy. 

If you see these parents again, I can't tell you they'll be happy to hear from you, but I think you have the right to talk to them because your son was hurt. Moreover, I think building an inclusive society requires someone to make the first conversational move, to reach out, and I'm hoping you are the one to do it.

I would say something like, "I know you've got a lot of challenges, but I felt it was important to tell you that that your child hurt my child today in the play area. Is there a way we can talk to him about more appropriate play? Is there anything that I or my son can do to help?"

In the end, I'm really sorry that your son got hurt.

I hope, though, that this is a moment that can lead towards a more inclusive society, not away from it. Inclusion, not same-ness. We don't respond to this boy hurting your son the same way that we might from another child. Same-ness just won't accomplish anything. But we DO respond. We must respond, and respond with dialogue, patience, creativity, and empathy.

"It's so sad when people have special needs": Thoughts on Inclusion from the Bus Stop

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.

Awkwardness and Inclusion

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.

Education - Individualized; not-sameness

I've been writing about work and inclusion this week. I actually began the week by writing against the sheltered workshop model and celebrating a Rhode Island decision. But as I clarified in that post, the goal isn't to end all sheltered workshops, but to end the default slide into segregation that dominates the work-life of people with developmental/intellectual disabilities.

We've seen that default slide end in education. When I was a child, I never saw kids with disabilities. That's just not an option anymore and we are all better for it. That doesn't mean, however, that every child should be fully included all the time. I wrote this:

There's no one pathway forward. The key is, as always, inclusion; not same-ness. For some people, a segregated controlled environment is absolutely essential for making progress in education or work or anything. My son is one of those people. In First Grade, he spends about half the day in a special needs room and half the day with his class. Although philosophically I am deeply committed to full inclusion, it's not the right thing for Nico right now. He needs the social interaction of a full class, but he also needs the quiet, controlled environment in order to work on his math, spelling, reading, and writing.

With that in mind, here's historian Margaret Storey in the New York Times, a DePaul professor and advocate for the same principle for her daughter.

A Civil War historian, I never thought I’d use the word “segregationist” to describe myself, but my daughter’s public school has changed all that. I’m not talking about racial segregation — her school is one of the most economically and ethnically diverse in our town. I’m talking about self-contained education for children with disabilities, which, in the United States, is increasingly rare.
My daughter is 10 years old, but as dependent on others as a 12-month-old. She cannot speak, but communicates volumes with her eyes, vocalizations and gestures. It can take a while to “get” her, but once you do, you’ll never forget how deep she is, nor how much she understands.
My daughter’s school challenges the idea that children with disabilities are best served by being educated alongside non-disabled peers. But the idea that inclusion is best, I would argue, is in danger of hardening into a dogma that risks re-stigmatizing children with severe or profound disabilities.

The dogma is very concerning. Nico is flexible, but needs some segregated space. Story's daughter, on the other hand, needs isolation. We can't let the laudible growing focus on inclusion undermine her needs. Storey continues:

The alternative of a special school is hard for some parents and educators to embrace. As one mother reflects, “Sending a child to a separate school can feel like a surrender, as if you’re giving up on keeping a child in the community.” I see this stigmatization all around me — most recently, in the mother who had to fight to have her nonverbal, significantly cognitively delayed child placed in a specialized school over the determined resistance of district authorities.

But there is an alternative: destigmatize these children and the special schools they need.

My daughter loves to learn, but to do it, she requires specialists trained to teach a child whose memory and cognition are affected by multiple daily seizures and loads of dulling medications. She needs a setting where the student-to-teacher ratio is low, the expertise of the staff very high, and one that has the resources necessary to pay for that intensive support available. There is no shame in this.

There should be no shame at all. Stigma is always a mistake. And yet she's right, our oscillation from segregation to inclusion has become a kind of dogma. Storey finishes:

We still need self-contained special education schools, and we need them to be rigorous and well-funded. Only when we honestly admit that we need these schools can we get down to the hard work of educating kids with disabilities, no matter what the setting. We cannot truly celebrate the diversity of people with disabilities if we fail to acknowledge the diversity among people with disabilities, and rise to meet the varied needs of all.

I'm really glad the NYT published this and hope we can extend the call beyond this piece.

Once again, I offer my manta: Inclusion, to the extent inclusion is appropriate, not same-ness.

That mantra includes Story's daughter and her need for a special school, with rigor, without stigma.

Inclusion and Work: A mini-manifesto

Yesterday I wrote about ending the abuses of sheltered workshops and received push-back from a reader and online-friend. Her son is finding his pathway into employment through a Goodwill sheltered workshop. I really appreciate her voice. I want to see change, but would hate for that change to limit options for her son or for anyone.

That said, the abuses and exploitation of people with disabilities in the sheltered workshop environment have got to stop. The challenge is to craft new systems that preserve possibilities for all people of all ability levels.

Beyond the laws, I argue that the emphasis on sheltered workshops pushes segregation over inclusion. Segregation is easier. Inclusion is hard. Inclusion takes creativity, more resources, and the willingness to push at a culture that too often wants to isolate people with disabilities or render them mere objects of inspiration, rather than full-blown members of society.

There's no one pathway forward. The key is, as always, inclusion; not same-ness. For some people, a segregated controlled environment is absolutely essential for making progress in education or work or anything. My son is one of those people. In First Grade, he spends about half the day in a special needs room and half the day with his class. Although philosophically I am deeply committed to full inclusion, it's not the right thing for Nico right now. He needs the social interaction of a full class, but he also needs the quiet, controlled environment in order to work on his math, spelling, reading, and writing.

And it's working. Nico can read. The key to the Individualized Education Plan is that first word - individual. Frankly, all children of all abilities need IEPs, but we lack the resources. It's not a perfect model, but the approach can carry forward into the working world.

I dream of a day in which all people with disabilities can take advantage of well-supported infrastructure to guide them in transition from high-school into adulthood.

Where whatever degree of independence, inclusion, protection, isolation, etc. that is best for them is available and economically feasible.

Where the word "shelter" in "sheltered workshop" is not a euphemism but a true description of a gentle, educative, environment that helps people with disabilities find meaningful work, build skills, and move out of the shelter if and when they can handle the turbulence of a more inclusive environment.

All of this will take government money, and lots of it. 

It cannot be done by charities alone. It cannot be done by commerce (buying stuff at Goodwill, for example. Or a bake-sale). It cannot only be available for people with means and contacts (Nico is likely going to be fine assuming all goes well; he's 7 and my wife and I are already making plans). In many cases, we will need to pay two salaries or stipends to do one job - a job coach + compensation for work.

The costs are high; but oh, the potential payoffs. Right now, there are hundreds of thousands, perhaps millions, of people currently cut off from the workforce, isolated in workshops, stuck at home watching TV, their hard-won skills deteriorating. They already impose costs on society, government, family, and themselves. Brought into a more inclusive working environment, some of those costs ease; more importantly, as with all inclusion, the whole society and culture benefits when we open the doors to difference.

So as I head into the world of work and disability, a topic on which I have much more to say, including revealing more about a pilot program that I helped start at my university - and which is scale-able to every university in the nation  - this is my trajectory.

End the laws that allow for abuses while maintaining choices and possibilities that take into account the full range of human ability and potential.

Inclusion; not same-ness. Shelter as a choice; not a default.

The Challenges of Inclusion (not same-ness): Friendship vs Help

My son rides the regular school bus, a step that we decided on this year. The system has been supportive. Nico's aide meets us at the bus stop and facilitates the ride. On the rare days when he takes the bus home, she's there (she has to take the bus anyway to get back to her car).

But there's also a girl named G. who is in Nico's class, and she's an outstanding helper. I discovered this the first time the aide wasn't able to make it (thanks to the terrible winter we've had here). So I brought Nico onto the bus and G. popped up from her seat, smiling at Nico, holding out her hands, and sitting with him. I've rarely been so deeply moved (although there was another girl, H., early in the year, who I wrote about. She's great too). Over the past month, Nico's independence on the bus has improved dramatically, and I think G. has a lot to do with it.

Lately, some behavior issues in transitions (running mostly) have been ameliorated by having peers, mostly girls, walk with Nico from place to place, holding hands, helping.

And yet, yesterday the Twitter user @think_inclusive linked to a fascinating article on inclusion called, "HELL-BENT ON HELPING: Benevolence, Friendship, and the Politics of Help." It comes from a pair of educational consultants and counselors focused on disability issues, and although the piece is from 1994, it instantly raised alarms about what I've been seeing at my son's school. It also, though, offers useful terms and categories of analysis to think about inclusion and its possibilities. In the end (spoiler alert), I think Nico and his peers are doing alright.

Here's the introduction of the article, opening with the social and policy changes that moved through schools in the 80s and early 90s (emphases mine throughout)

The move toward cooperative and inclusive education is part of a larger move out of social oppression for individuals with disabilities. It is part of a groundswell movement of social reform that holds as a central tenet the belief that all children, including those with disabilities, are capable of learning and contributing to their classrooms and communities.

This is the first generation of children with and without disabilities to grow up and be educated together. Consequently, within inclusive education we have come to entertain a cheerful optimism that the generation growing up now will be different than those of the past. We are hopeful that greater contact between children will begin to break down the barriers of misunderstanding and dispel the myths that have created society's response to disability.

It was a good hope and authors note some genuine progress:

At first glance, this change might seem to be taking place. Individuals with disabilities are more visible and increasingly involved in community life. If we believed that greater proximity led to greater acceptance, it could be argued that we are successfully participating in the creation of a new social order. Unfortunately, this is only partly true. Instead, we are finding that increased visibility and "presence" alone do not necessarily ensure that those with disabilities are fully included.

True inclusion is dependent on the development of meaningful and reciprocal relationships between children. As classrooms become increasingly diverse, new strategies are being developed to ensure that the new students are more than simply present. Friendship circles, school clubs and special buddy systems have been implemented as formalized attempts to foster interaction and develop relationships.

Meaningful and reciprocal relationships. That's such a simple but powerful phrase. I've been thinking about my son's relationships. There are typical kids who clearly like him, hang out with him, and indeed help him (like G.). Are the relationships reciprocal? That I'm not sure.

The piece then expands to thinking about agency, or lack thereof, by focusing on "help."

Our society still perceives those with disabilities as perpetual receivers of help. Descriptors like "less fortunate" and "needy," telethons, and tear-jerker journalism all continue to perpetuate this view.

Unfortunately, there is still a distressing tendency in some schools to base interactions with students on these broader societal misperceptions, despite a sincere desire to end the isolation experienced by so many children with disabilities. Friendship clubs and buddy systems based on stereotypical beliefs risk perpetuating prejudices and myths and even exacerbating the problem.

Obviously, it is essential that students be provided with opportunities to interact. Formalized friendship and support circles may be effective ways to building relationships. However, an over-emphasis on the "helper/helpee" relationship can easily skew the delicate balance of giving and receiving that is the precursor of true friendship. It is critical, then, to regularly and carefully examine the nature of the interaction we facilitate and the attitudes that inform it.

Finally, an example:

Consider the following scenario:

Four third grade children from a local elementary school have come to speak to a room full of adults. They've been invited, with their teacher, to talk about friendship. 

Three of the four children in the room can speak, one of them can't. Three of the four children in the room can walk, one of them can't. The three walking, talking children are here to tell us about their relationship with the young man in the wheelchair. 

Adults in the room begin to smile as the first classmate talks. Approving nods accompany the child's words, "He's different on the outside, but inside he's just like me." 

The conversation whirls around the boy in the wheelchair as he scans the room, looks at his communication board and sometimes watches his classmates. 

"We take turns being his buddy," offers one young girl. "Everyone has a turn."
As the children talk and answer questions, it is interesting to watch the interplay between the subject of the discussion and the girl to his left. She has one arm around his shoulders, and in the other hand holds a washcloth. She wipes his mouth repeatedly. At one point, he appears to lose patience and struggles a bit. One hand jerks forward. His friend seizes his and holds it still. He makes a noise of clear irritation, and attempts to pull his hand free. 

His classmate smiles fondly at him, continuing to restrain his hand, and wipes his mouth again. 

We heard the boy's three classmates being called "the hope for tomorrow" and "exceptional kids". All over the room, adults were beaming. After all, this relatively new phenomenon seems to hold out some hope for an end to discrimination and distance between those who have disabilities and those who do not. 

However, as the presentation continued, it became increasingly apparent that while both adults and children thought they were talking about friendship, much of the discussion taking place was really about help. While there was undeniable warmth between the children, most of the comments and non-verbal interactions reflected a "helper/helpee" relationship, not a reciprocal friendship.

The whole article is worth reading as it moves from laying out the problem to potential solutions, ways to build reciprocal relationships, and the challenge of empathy. Empathy, in fact, lays at the core of this discussion - to move from a mechanical relationship of helper - helpee / active - passive - into one of mutual understanding and reciprocity.

Is this what's going on with Nico? Warmth. Helping. But in a way that denies him agency? I don't think so, not yet, but it's a fine line to walk and one I'm going to watch.

Here's something that sounds hard: I do not think Nico has any typical friends other than his sister. He has not been invited to a birthday party (Ellie has an invite practically every weekened). He doesn't get invited to playdates. But that's only if we define friendship in a typical way as experienced between neuro-typical children. 

I don't. My principle is inclusion, not same-ness. Here I turn back to this useful article and think about "meaningful and reciprocal relationships." Those I see forming all around Nico, I see Nico actively shaping them. I see them occurring in his classroom, at his after-school program, and in the neighborhood. It's a long slow process. The results may or may not look like typical friendships. 

And that's ok. Reciprocity and empathy will do just fine.

Inclusion not Same-ness: Nico's holiday performance

As promised on Friday, here's a video of Nico's fall performance that illustrates my principle of "inclusion, not same-ness." Inclusion is complicated. We demand reasonable accommodations, and we sometimes get them without litigating "reasonable," but inclusion requires thoughtful, intentional, good-will from all parties.

Sometimes inclusion means bringing someone into a group and enabling them to do the same thing as everyone else through some clever means. Sometimes they need to be included by sitting on the edge or the fringe, present but not in the group. Sometimes, inclusion means creating space for an entirely different expression of self or participation in an activity or class. Inclusion requires creativity and highly individual solutions to problems.

Inclusion also operates in the passive voice. A person is included. The action comes from the rest of us in this construction. But in fact inclusion requires action from everyone, and that's what I love about this video. The whole first grade, the special ed program, the music teachers, and really all the kids and parents, created a space for Nico to be included. Then Nico included himself by taking center-stage. There are three songs and they get better, with the third Nico acting as "junior band-leader," holding up signs that say "Boys" and "Girls," helping the music teacher direct who gobbles at any given time.

It's also a sign of growth, as during the last two years he really refused to participate during the performances, overwhelmed by noise and so many people.

So congrats to Nico and to his school for creating a space for Nico and for understanding that to be included, he'd need a different space than everyone else. He cannot stand on a riser and sing like the other kids, so what to do? Watch and smile.

Inclusion and not Same-ness

Not what my family looks like

A few weeks ago I offered my philosophy on inclusion, illustrated with a picture of Nico dancing in the middle of a circle of musicians. I called it "inclusion, not same-ness."

Sometimes, inclusion means people with disabilities get to do things that not everyone can do. Sometimes inclusion means that people with disabilities do not do the typical things and don't engage, but still have a meaningful experience while on the fringes. Sometimes they do the typical things but in a different time frame. And sometimes, there's no difference.

The key is to keep the goal, inclusion, in mind, and not focus on same-ness. I see lots of people make this mistake in their interactions with people with disabilities (or just people with different ideas of what constitutes a good time). At parties, for example, I have so many friends deeply content to be in a room with other people reading a book in the corner. They are included. They are happy. Check in with them. But don't push to impose your value of "party" on others.

Mostly, I make this mistake all the time, either explicitly or in my quiet thoughts, sometimes laden with sadness, when I want Nico to find pleasure in the things that please me. And they don't always. And some may never be a part of his life. And it's ok to be sad. But what matters is inclusion.

Ellen Lonquist, a therapist and a mother of a boy with Down Syndrome who lives in the area, has written a great piece on What Families With Special Needs Wish People Knew For The Holidays. Here are some excerpts, all of which Lonquist illustrates with quotes from real parents (I know some of them). The first one basically argues for inclusion, not same-ness.

Many families named their wish that people would understand that their kids don’t always find the magic in the usual places- whether it be spinning the dreidl or visiting Santa. Many parents have had to let go of their own wish for their kids to respond to holiday traditions as they did or their other children do and have had to accept a different picture- it can hurt to renegotiate this acceptance with every push from yet another family member. Try to realize that every kid has a different experience.

 That's certainly true for Nico, and I LOVE the followup quote from the piece, with Lonquist's own comment.

“Johnny doesn’t get Santa. And doesn’t care,” says Anna, whose 6-year-old has Down Syndrome. My son, who also has Down Syndrome, LOVES Santa… but he loves all jolly, grandfatherly men. He loves our local crossing guard with equal enthusiasm.

Nico likes to go up to men, put his hand on their bellies, and say, "Hiiiiiiiii." I'm trying to convince him that words, not hands, are appropriate. I have failed so far.

You should read the whole piece as it moves between practical and ways-of-thinking. Here's one practical note with which I'll conclude as we head towards the Thanksgiving Holidays.

Safety issues

Many kids with special needs take off when the spirit moves them. And they take off quickly. “It would be so helpful if people would secure their houses- doors and maybe dangerous basement rooms.  We tell people they need to baby-proof, but to remember that he has the capability of a 12-year-old to figure out locks. But they still don’t quite get it, and then he’s running off into traffic or down the street,” says Hannah, whose 8 year-old-son has autism. Ask parents about reasonable interventions to keep their child safe- or be prepared for them to have to follow their child around all day.

This is one of the most exhausting parts of traveling. This summer we were at my brother's house and Nico got out the front door. We were getting ready for a walk and the door got unlocked and Nico just walked out and was halfway down the street talking to someone driving in a car by the time I came sprinting down to get him. I live with my head on a swivel when I'm in an unfamiliar place, never quite knowing how Nico will react. I hover. I over-protect. This is why.

This is also part of inclusion, being ready to adapt your environment in such a way that you can include the parents, too, and make them feel comfortable that their child will be comfortable.

I intend some light blogging days over the next week as I'll be busy hosting Thanksgiving for the first time. But we'll see. And once there's video, I'll show you one of the greatest examples of inclusion, not-sameness, in the history of history, featuring my son at his school performance yesterday. So stay tuned!

Inclusion - It looks like this

I'm always very skeptical of the story "boy/girl with special needs allowed to do normal sports thing" stories. And if you don't know what I mean, you don't obsessively follow mainstream news about kids with disabilities! This might be a good thing for you.

I just feel that often these events become tokens of inclusion, not actual inclusion. They make people feel good when the "waterboy" with Down Syndrome scores a goal, and sure, it's nice, but does it mean anything? Are these people going to work for inclusion more broadly, or is their work done? It veers heavily towards empty inspiration without depth.

So with skepticism, I set out to watch this video about a boy with special needs scoring a touchdown. By the end, I felt deeply moved and my eyes filled with tears.

I'm trying to articulate what's different about this story for me. First, it was a surprise to everyone but the players, not a pre-scripted token act in which everyone was "in the know" except for the child with special needs. Often in these affairs the other team "lets" the person with disability score or shoot, and I don't think that's the case here. As Keith goes in to score, the team surrounds him and protects him. This is a real TD in a competative game ... I think. If you have evidence to the contrary, well, I guess I want to know.

But really, it was watching the typical boy weep as he talked about how this event changed his way of thinking. You cannot watch this and think this event will lack for carryover for everyone involved, from Keith, his teammates, his parents, the community. This doesn't feel like a one-shot token event, a moment of inspiration lost in a world of isolation.

This is what inclusion ought to look like.

Inclusion in the airport: A bad example

About a month ago, I discussed a story about more than reasonable accommodation in Heathrow airport for a young man with autism. The article reads, in part:

The 21-year-old has severe autism and obsessive compulsive disorder, but has to negotiate the hectic bustle of Heathrow airport to attend Boston Higashi High School in the US.
To cater for him, staff have attempted to re-create the same conditions every time he flies.
Four times a year for five years, Aaran has met the same airport staff, at the same check-in desk, visiting the same shops, leaving from the same gate on to a plane on which the same seats are reserved.

Let's look at a comparable story from the U.S.

The trouble began when Bergeron and Apollo, traveling with friends, were going through security at the Sea-Tac Airport in Seattle. They were on their way to California to take part in a photo shoot for a campaign called “Everybody Plays,” which celebrates children of differing physical abilities. That was a great irony, Bergeron said, as “we were only flying because of his medical issues.” 

So they were on their way to an event on inclusion.

Apollo was born with a condition known as a double aortic arch, which has led to trachea and esophagus problems that make it difficult for him to swallow food. To help him take in enough calories to grow, he’s been outfitted with a permanent gastronomy tube to his stomach, through which his parents feed him high-calorie formula three times a day. It was the cans of formula that sent TSA agents in Seattle into high-alert mode.

“I walked right up to the first agent and told her, ‘My son is tube-fed and this cooler has formula and medical supplies in it,’” Bergeron said, explaining that she had hoped that being direct would be a helpful approach and that it would have prompted a TSA agent to do a thorough search and swab of the items before sending them through to their gate.

Instead, she said, the agent directed her to continue through the line and to put the bag through the X-ray machine, and “didn’t even give a heads-up to the next agent.” That’s when the agent at the machine “freaked out,” Bergeron said, because of the liquid—which was then put through a scan that indicated “explosive residue” had been detected. “Clearly, the things that test for explosive residue don’t work very well,” she said, adding that, at that point, “they surrounded me and began treating me like a suspect—of what I don’t know.”

They were escorted to a restroom then, as Apollo had to go, but Bergeron was not allowed to take him alone. Then the two were ushered to a private room where agents gave Bergeron a thorough pat-down and where a nervous Apollo began to cry and beg his mom to hold him. Bergeron was told she couldn’t touch her son because she could “contaminate” him. “It was horribly traumatic for him,” she said.

I can imagine Nico's panic under this situation. Of course they missed their flight. Of course this is not an isolated incident. Of course the TSA says - if you don't want to be harassed, call ahead. And yes, you should call ahead, but you shouldn't have to.