Can you be 'included' and still feel left out?

By Gail Teachman

What do we mean when we talk about inclusion? For the most part, we've come to take it for granted that inclusion is always a good thing. But what is inclusion anyway? Are we there yet? How will we know when we get there? Are these even the right questions to ask?

In the past a children's rehab goal was 'community integration,' but in the last 30 years there's been a move toward using the term 'inclusion.' Even though inclusion is outlined as a goal in international human rights documents and, more locally, in our national and provincial policies and institutions, it's challenging to define what it means for children in everyday life, or how to achieve it.

Most often, notions about inclusion are depicted using a circle to suggest that it's desirable to be inside the circle. It's tempting to think that inclusion means being able to access mainstream public places like schools or libraries. But research has shown that being able to physically get into these places is not enough, and that sometimes, when there are no supports in place to accommodate people with disabilities, their experience in public places can be disabling.

As an occupational therapist I often observed young people who were 'included' in a mainstream classroom at their local school, but who sat at the back of the room away from other students and interacted primarily with a teaching assistant.

This seating plan often happens for kids who need space for a wheelchair, a bulky speech device and a desktop computer, and who work with an assistant. Most students with this equipment accept it as a given that they can't sit in the midst of students.

What I heard from youth was that they wanted more opportunities to hang out with other kids at school. They felt included in one sense, but excluded in other ways that were very important to them. So we need to critically examine what we mean by inclusion. What types of inclusion enhance participation and make students feel like they belong? What types of inclusion make students feel different and left out, even if this isn't the intended effect?

Research on inclusion has shown tradeoffs when specialized schools are closed and kids with disabilities are integrated into regular schools. Families want their child to be at their local school, but they mourn the loss of a community where disability is common and positive disability identities are modelled.

Very little research has looked at understanding inclusion from the perspective of children growing up with a disability, so I've chosen to make these questions the focus of my doctoral research. I'm just getting underway with my study, which will explore how youth who use augmentative and alternative communication experience being included or left out. What are the factors that lead them to feel they belong and are participating in class? I'll also consider the ways that broader notions about inclusion might impact these young people.

I'd like to share some tentative ways of thinking about inclusion that I've developed for my study. These statements were developed, in part, by drawing on research based on input from people with disabilities. I'll test these working statements throughout my research, and modify them as I learn more from study participants.

What do you think about these ideas?

• Inclusion is more than being located in a particular place or space. Inclusion is created socially through relationships that involve people and places. This means it is fluid and constantly changing or fluctuating.
• Inclusion is 'in the eye of the beholder.' This implies that individual children and youth might have very different ideas about what factors enable them to feel like they belong, and what the barriers to being part of an activity or group might be. It also means that it's difficult to objectively identify inclusion because it's primarily a subjective experience.
• Inclusion isn't necessarily experienced as all or nothing. We can feel both included and excluded at the same time.
• Inclusion isn't about a one-way move to include children with disabilities in mainstream places or activities. This isn't always achievable or desirable.
• Many of our ideas about inclusion stem from the assumption that being in the centre of mainstream society is ideal. This tends to obstruct other ways of thinking about inclusion. It's also troubling because it suggests that it's better to be 'normal' or to try to be as normal as possible. It leads to judgments about who's in need of inclusion, and suggests that not being included in mainstream events or places is a failure. Thinking differently about inclusion involves thinking differently about disability. In particular, we need to stop thinking about disability in primarily negative ways.

I don't know if the time has come for a new word to replace inclusion but I do know that we have much to learn about how inclusion is understood, imagined and experienced by children and youth with disabilities. What types of inclusion do they desire? And in what social spaces?

Gail Teachman has more than 20 years' experience as an occupational therapist at Holland Bloorview and teaches at the University of Toronto. Her research examines norms and assumptions in children's rehab in relation to youth who use augmentative and alternative communication and their families.