Inclusion is a work in progress

(From my remarks as part of a panel, “Learning the Undeniable Truth About Inclusion”, presented with Nicole Eredics, Beth Foraker, Renay Marquez and Schuyler Hudson at SXSWedu on March 8, 2017)

Good afternoon, my name is Rob Rummel-Hudson. I’m known around most parts as Schuyler’s dad, and also occasionally as the author of Schuyler’s Monster, the memoir about raising a little girl with a disability that I wrote as a love letter to my daughter. The perspective I’m bringing today is almost exclusively that of a parent advocate. I hope those of you who regularly sit in on IEP meetings won’t hold that against me too much.

I’d like to step back and take a broader view of inclusion, not just as an educational philosophy but in the context of a larger societal narrative. To do that, I’d like to begin with the words of Jean Vanier, the Canadian activist and writer who formed L’Larche, a project that builds communities of people with disabilities formed as a kind of safe haven where they can live on their own terms, not as a kind of subset of so-called “typical” society.

“When we love and respect people, revealing to them their value, they can begin to come out from behind the walls that protect them.”

― Jean Vanier, Finding Peace

Jean Vanier believes the afflicted compel those of us without disabilities to face two difficult questions. “Do you consider me human? Do you love me?” He believes, as I do, that as we meet people with disability in their own world, our answers to those questions evolve and solidify.

We begin, shamefully, with fear. I’d suggest that this fear comes from a place deep inside ourselves, in that primitive part of our brain, as we’re faced with the proof of the uncertainty of being human and how it can affect any of us, particularly our children. We move on to pity and to the stage where we help people with disabilities and show them respect, but still regard them on some level as less.

It is only when we enter into real relationships of authentic depth that we are transformed. Those relationships can happen on commercial levels, with companies like CostCo and Walgreens making corporate-level decisions to hire persons with physical and intellectual disabilities, to pay them wages that are competitive or even equal to their unimpaired co-workers, and to create training and workplace structures specifically designed to encourage long-term success with those employees.

It can happen on societal levels, with more disability visibility in advertising and entertainment, in film and in television, on shows like ABC’s new comedy Speechless, and with more and more high school students being recognized by their peers rather than bullied. It can happen in universities with a strong commitment to accessibility and to providing opportunities for students and teachers with disabilities.

It can certainly happen when we as a culture begin to expect more from ourselves, to elevate our language and our humor and what we perceive as acceptable treatment of the disabled. It can happen on a personal level, too, as more and more people with disabilities are recognized through their own self-advocacy efforts.

It can happen, those authentic relationships can happen, but they start with us, with each and every one of us. Those of us in this room are obviously inclined to take those steps. But I imagine a world in which that transformation spreads, like a virus, through our family members and our friends, our co-workers and our neighbors, through the people we elect into office, or if they won’t change, through our own efforts to affect real change as elected policy-makers ourselves.

Think of some of the worst examples of overt, unapologetic racism from the not-too-distant past, and how unthinkable some of those attitudes are now. Imagine a world in which similar attitudes towards people with disabilities would carry the same sting. Imagine a world where persons with disabilities aren’t thought of as less. Think about what it might look like, because it is in gatherings like SXSW where that sea change can begin to really happen.

So what do our kids need from an inclusive society, before we even consider their classroom environment? We could start with patience. And along with that, opportunity, in employment and independent living and carving out those places where my daughter Schuyler and people like her can develop their talents and use them. As a society, we’ve built this structure that values contribution, but in a very limited scope. “What do you do?” We hear that question and we know what it means. “How do you produce capital? How do you feed the machine?” And that’s not a very useful metric for people like Schuyler.

Back in 2009, I appeared on a panel at the Texas Book Festival here in Austin with Rupert Isaacson. He’s the author of Horse Boy, about taking his autistic son to Mongolia to expose him to this nomadic culture that’s formed closely around their relationships with horses, which his son really connected with. Rupert runs a foundation now that uses equine therapy for kids with autism, and he’s just the most extraordinary person you’ll ever meet. You meet him and you’re instantly like “Yeah, this is a guy who would take his kid to Mongolia to ride with nomadic tribes and chill with shamans on the steppes of Asia.” It’s like meeting Indiana Jones, I swear to god. I might have a little man crush on Rupert.

Anyway, at our panel, one of the things that Rupert talked about was how in these cultures that we might consider primitive, kids like his son or like Schuyler, kids who we would see as being impaired or disabled, kids who are profoundly different, these kids are identified at an early age and begin training as spiritual leaders, either shamans or spirit guides or whatever. Their cultures see those differences not necessarily as deficits, but rather as a different way of existing and of perceiving the universe.

I actually found an interview where he expressed the same sentiment as he did on our panel at the book festival:

“If you go to the Kalahari or Mongolia, life is so harsh and practical there, you’re not going to do something because it’s a whimsical notion. There, neuropsychiatric symptoms in children are regarded as qualification for a job. That is a fundamentally different approach. [They] know from experience that kids with the neuropsychiatric stuff, by the time they hit puberty, they are going into training as shamans because they seem to have this affinity with the spirit world, seem to have already one foot in it, and a special sensitivity. So they are then qualified for this integral role.”

Their culture has a valued place for those who experience the world so differently. But, you know, they don’t have a vibrant stock market or the iPhone 7, so we look at them as being cute and primitive. And I think the truth is a lot more complicated than that. So I think as a society in general, and as educators and therapists and advocates in particular, we need to try to find not just compassion, although god knows we need that now more than ever. But we also need to find value in people who exist and function so differently. And that’s hard, but I really believe that’s where the real work is.

Now, when we apply these same ideas of human value and authentic relationships to the educational needs of special needs students, an equally egalitarian approach is necessary. Not just what can a student with a disability gain from an inclusive environment, but in what way is that student empowered to enhance the educational experience and life growth of their neurotypical or nondisabled peers? How does the inclusive environment integrate the strengths of the disabled student and help them grow towards enriching and meaningful adult life?

The philosophy behind inclusion is tricky, because it’s not just about giving kids with disabilities a place in general education classrooms. It’s not simply reserved parking. Inclusion is about finding how these kids, as individuals, can learn in those larger environments, and what supports and accommodations they need in order to make that happen.

The separation of general education and special education as a college teaching model is probably outdated, particularly as the concepts of meaningful inclusion begin to move beyond education and into a larger societal narrative. The key is always going to come back to the interpersonal relationships with students and families, and empowering those students to affect their own learning environments.

Special education training is vital for specialists, and I don’t support efforts like those underway in Arizona (and probably elsewhere) to shift those specialists to general ed populations.

At the same time, however, general educators in inclusive environments are going to be bearing more and more responsibility for kids who have in the past been more segregated. Teacher training in college can be a huge part of this process if the model can shift to an inclusive mindset.

As I said before, I truly believe that the best training environment, for teachers and for citizens alike, is one in which we enter into authentic relationships with people with disabilities. Special needs kids and their families can and should be the primary facilitators in that long process. New teachers who have been trained and acclimated from the beginning to build on inclusive environments will be in a good place professionally and philosophically to implement that.

Just last week, an article appeared in The Atlantic that addressed some of the deficiencies in our teacher educational system. A few points stood out to me, and you can read them here, but since we’re educators, I figured we’re all accustomed to having people read Powerpoint slides to us out loud.

* A study in 2007 found that general-education teachers in a teacher-preparation program reported taking an average of 1.5 courses focusing on inclusion or special education, compared to about 11 courses for special-education teachers.

* Between 1989 and 2013, the percentage of students with disabilities who were in a general education class for 80 percent or more of the school day increased from about 32 percent to nearly 62 percent.

* Some research shows as many as 85 percent of students with disabilities can master general-education content if they receive educational supports.

“We’ve got to step up to the plate and think differently and act differently, and that’s hard because everybody gets comfortable and systems are hard to change.”

– Mimi Corcoran, president, National Center for Learning Disabilities (NCLD)

The last point I want to make today before I hand things over to Schuyler concerns the outstanding teacher.

For kids with disabilities, there are almost always success stories that revolve around the “outstanding teacher”. These are the ones who go above and beyond with special needs kids, and as parents, we come to depend on finding them. They are the ones who go that extra mile to find an approach that works for each student’s unique learning needs.

We appreciate those teachers, believe me, probably more than you realize. But because I’m something of a curmudgeon, and a chronic worrier where my daughter is concerned, at the beginning of every new school year, I always have a thought, and it’s one of those that keep me up late. “What if this is the year she doesn’t have that outstanding teacher?

The outstanding “extra mile” teacher can be a hidden trap, because we depend on them, but they are neither consistent nor guaranteed. As our current educational system stands now, teachers are held responsible for a tremendous amount of responsibility as it is, and most inclusive school settings simply carry the expectation that gen ed teachers will step up and go that extra mile for their special needs students.

Many do; I’d say that MOST do. But as we build a truly effective model for inclusion in our schools, it’s imperative that we create and nurture an environment where that flexibility in curriculum and in the approach to individual students with particular learning needs becomes systemic. It needs to be built into the core philosophy beginning all the way back in college education courses. And it only works when teachers and students alike believe in and protect the idea that every human being has real, intrinsic value to our society.

I’d like to conclude this morning by recognizing that today we celebrate International Women’s Day. In addition to the accomplished women I’ve been privileged to share the podium with today, I’d like to recognize the two women in my own life of whom I am so ridiculously proud.

The first isn’t actually here today. Schuyler’s mom, my wife Julie, doesn’t love public appearances and she protects her privacy as well as she can, given my chosen profession. She likes to call herself the silent partner, and like most silent partners, she’s probably the one who does most of the crucial work. The best reflection of Julie I can think of is that our daughter is turning out like her in all the best ways possible. And I’d be an unholy mess without Julie. Everyone knows that.

Secondly, I’d like to recognize the young woman you’re about to hear. Schuyler has been handed a pretty challenging set of circumstances in her life, and she’s taken those obstacles and built lovely and powerful structures out of them.

Schuyler is the most positive and interesting, and FUNNY, person I know, and while I’d love to take credit for the wonderful and extraordinary person she’s become, the truth is that as a father, I got incredibly lucky. If you look at my daughter and you feel bad for her, you’re missing who she is and what she has the potential to become. But if you look at Schuyler and you feel jealous of me for getting to be her dad, it’s safe to say you get it. Thank you.