Monday, March 25, 2013

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.


This post has really made me think and consider inclusion. Having a non-verbal child with gobal developmental delay who has just started in a mainstream school with 'typical' kids is really opening my eyes. While I want her to be included - I'm not sure she really is - and I'm not sure whose 'fault' it is. Her participation and interaction with her peers is very limited and most of her time is spent with adults. But would this be different if she were better included? And how can that be achieved? You can't force fit the situation

Thanks Julie! I think this is one of those topics that's really hard to talk about because, as Gail says, there's an assumption that if you just put students with disabilities in regular classes it's a good thing. I feel that our history with Ben has been one of choosing the lesser of evils when it came to placement. He did have a good experience at an alternative elementary school in terms of friendships, but the curriculum wasn't appropriate for him. He's now in a deaf/hard of hearing program in a regular school but he's not intellectually where the other kids are and he has no friends. I don't feel we've ever had an "ideal" situation as an option. I think there are some really deep questions that need to be asked about superficial inclusion (which makes everyone in the non-disabled community feel great, and they can pat themselves on the back for being so progressive) and a real sense of belonging, which, as Gail says, wouldn't be a one-way move but be reciprocal and involve all kinds of education/awareness/resources and a willingness for typical folks to step outside their comfort zone. In our reverse integration class at HB they have a wonderful curriculum on friendship and difference -- it sounds basic, but it's actually something that needs to be taught.

When Jessie was in school, we used to always be guided by the "inclusion isn't a place/program, its a process," approach and that it was always about relationships. Then, we would also get into the "included in WHAT?" What is it we were aiming for? We had years that were great, some that were disasters ... and at the other end, all I can say is we always pulled her out (home schooled, switched schools, switched classrooms, switched school boards, you name it) when the situation became harmful to her, and always duked it out when we thought we had a chance at creating something exciting. And, at the end of it all, I still firmly believe that all of us struggling with inclusion made schools a better place and she had a lasting POSITIVE impact on her sense of value and place in our community and on her peers sense of value of themselves (just as people, because we teach our children, by fighting for inclusion, that EVERYONE deserves to belong and that we will fight for your right to belong). But I also feel that we fight strongly for inclusion (as for the rights of any disenfranchised group) NOT to have them always included, but to shift the balance so that we have more diverse communities with more spaces and more ways of relating that allow us to value and share our differences and our connections. So, at the time we fought for inclusion for Jessie, I had no doubt that in the end run, what we were fighting for was for schools to include ALL children as active learners and to create different spaces and ways of teaching that would and could honour that. Its that swing of the pendulum thing that brings us back to a wider "norm." So to speak....

Very thoughtful questions, ideas... I could write a mile ... and I so look forward to hearing more about your work!

Also, to clarify, inclusion does not in any way mean or assume that it is better to be normal. It does assume that it is better for our society to include and reflect the diversity of the human race. Inclusion is about gifting both ways. Its about breaking the current perception of norm, value,and building something new with the pieces. I also think that when a so-called inclusive situation/classroom/whatever is not working, it is revealing the underlying brokenness of that classroom in its ability to serve all children.

I think the time has come to abolish the word 'inclusion' when talking about people. I like to include milk in my tea and when I'm in the mood, I'll include sugar in my coffee :)

By talking about inclusion, I worry that we allow the option of exclusion, and this, I feel, is where the issue needs more focus.

I agree that children with disabilities are at risk of being excluded (and that it does happen) in many ways, due to access, socially, educationally but I believe that everyone has the right to 'be' equally - the starting point for every child must be the same. For example, a child who uses a wheelchair will sit in the middle of the line in assembly, even if it means the other children have to swerve to get past etc. That isn't inclusion, that is just 'being'.

When you say "What types of inclusion enhance participation and make students feel like they belong?", I feel that if for now, I accept 'inclusion' as a positive word, the question should be 'what types of participation enhance inclusion...".

In England, there are lots of changes afoot legislatively, relating to children ('including' those with disabilities :)), and along the way, a politician described the need to 'end the bias towards inclusion' when talking about education. This comment really worried me, and still does, because it makes me feel like society still doesn't think it has a responsibility to ensure people with disabilities have the same opportunities as everyone else, or that expecting equality for disabled people is somehow detrimental.

I personally know parents who choose not to pursue 'inclusion' for their children because to achieve it is just too difficult, both in terms of time and energy and of the effects it has on their child. I respect this, but as a parent in a position where I don't really do 'inclusion', I would like to see more action being taken to ensure that if a child with disabilities wants to do something, society is in a position where it is unable to prevent this from happening, and even better, taht it has the experience and knowledge to enable it to happen. To do this, I feel disabled children need to be visible in society.

Good luck with your study, it is certainly a thought provoking topic and I'm sure there will be lots of comments and interest in your ideas :)

Thanks for sharing