Saturday, March 15, 2014

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.

3 comments:

Mardra Sikora said...

Yes. I think so too.

Steve said...

David -

Thank you for helping me think more clearly about what I really want for my daughter. Meaningful and reciprocal relationships really struck a cord. And inclusion, not same-ness is also a very powerful phrase. I know what I want to say. It helps a whole lot to have a good words to say it.

David Perry said...

Thank you Steve! They have been useful for me and I'm glad they seem to be for you.