Thumbs Up! - Laidlaw Foundation · Thumbs Up! Inclusion, Rights and Equality as Experienced by Youth with Disabilities JANUARY 2 003. Catherine Frazee teaches at the School of Disability

Catherine Frazee

W O R K I N G P A P E R S E R I E S

PERSPECTIVES ON SOCIAL INCLUSION

Thumbs Up! Inclusion, Rights and

Equality as Experienced byYouth with Disabilities

J A N U A R Y 2 0 0 3

Catherine Frazee teaches at the School of Disability Studies, Ryerson University, Toronto and is Co-Director of theRyerson RBC Foundation Institute for Disability Studies Research and Education.


Catherine Frazee1

Thumbs Up! Inclusion, Rights and Equality as

Experienced by Youth with Disabilities

Copyright © 2003 The Laidlaw Foundation

The views expressed in this paper are those of the author and do not necessarily reflect those of theLaidlaw Foundation.

National Library of Canada Cataloguing in Publication

Frazee, Catherine, 1954-Thumbs up! : inclusion, rights and equality as experienced by youth with disabilities /Catherine Frazee.

(Working paper series Perspectives on social inclusion)Includes bibliographical references.ISBN 0-9730740-9-4

1. Youth with disabilities–Canada. 2. Social integration–Canada. 3. Equality–Canada. I. Laidlaw Foundation. II. Title. III. Series: Perspectives on social inclusionworking paper series.

HV1569.3.Y68F73 2003 305.9'0816'0971 C2003-900439-2

The Laidlaw Foundation365 Bloor Street East, Suite 2000 Toronto, Ontario, Canada M4W 3L4Tel.: (416) 964-3614 Fax: (416) 975-1428

PresidentPaul Zarnke

Executive DirectorNathan Gilbert

Editing and LayoutIs five Communications

This paper is part of the Laidlaw Foundation’s Working Paper Series, Perspectives on SocialInclusion. The full papers (in English only) and the summaries in French and English can be down-

loaded from the Laidlaw Foundation’s web site at www.laidlawfdn.org under Children’s Agenda/Working Paper Series on Social Inclusion or ordered from [email protected]: $11.00 full paper; $6.00 Summaries (Taxes do not apply and shipment included).


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Table of Contents

About the Laidlaw Foundation..................................................................v

Foreword..............................................................................................vii

Thumbs Up! Inclusion, Rights and Equality as Experienced by

Youth with Disabilities.............................................................................1

Introduction: "In our own way... On our own terms".....................................1

Inclusion: "To be who I am... To do what they do"........................................2

Inclusion: "Sharing, Sharing, Sharing".......................................................4

Equality and Exile: Lunch in Room 20.........................................................8

Conclusion: An Appetite for Involvement..................................................14

Endnotes.............................................................................................16

Bibliography.........................................................................................20

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About the Laidlaw Foundation

The Laidlaw Foundation is a private, public-interest foundation that uses its human and financialresources in innovative ways to strengthen civic engagement and social cohesion. The Foundationuses its capital to better the environments and fulfill the capacities of children and youth, to enhancethe opportunities for human development and creativity and to sustain healthy communities andecosystems.

The Foundation supports a diverse portfolio of innovative and often unconventional projects in threeprogram areas: in the arts, in the environment and improving the life prospects for children, youthand families.

Working for social inclusion is a theme that underlies much of the Foundation’s activities. The keywords in the Foundation’s mission — human development, sustainable communities and ecosystems— imply that achievement will rely on the enhancement of capacity and capability. Not only is socialinclusion being developed as an emerging funding stream, it is an embedded Laidlaw Foundationvalue, both structurally and programmatically.

Nathan GilbertExecutive Director

For more information about the Laidlaw Foundation please contact us at:

The Laidlaw FoundationTel: 416 964-3614Fax: 416 975-1428Email: [email protected]

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Foreword:

The context for social inclus ion

The Laidlaw Foundation’sPerspective on Social Inclusion

Children have risen to the top of gov-ernment agendas at various times overthe past decade, only to fall again

whenever there is an economic downturn, abudget deficit, a federal-provincial relationscrisis or, most recently, a concern over terror-ism and national security. While there havebeen important achievements in public policyin the past 5 to 10 years, there has not been asustained government commitment to childrennor a significant improvement in the well-being of children and families. In fact, inmany areas, children and families have lostground and social exclusion is emerging as amajor issue in Canada. Examples abound andinclude these facts.

• the over-representation of racial minorityfamilies and children among those livingin poverty in large cities, and the denialof access to many services by immigrantand refugee families;

• the 43% increase in the number of chil-dren in poverty in Canada since 1989,the 130% increase in the number of chil-dren in homeless shelters in Toronto, aswell as the persistence of one of the high-est youth incarceration rates amongCommonwealth countries;

• the exclusion of children with disabilitiesfrom public policy frameworks (e.g. theNational Children’s Agenda), from defi-nitions of ‘healthy’ child developmentand, all too often, from community life.

These situations provide the context forthe Laidlaw Foundation’s interest in socialinclusion. The Foundation’s Children’s Agendaprogram first began exploring social inclusionin 2000 as a way to re-focus child and familypolicy by:

• re-framing the debate about poverty, vul-nerability and the well-being of childrenin order to highlight the social dimen-sions of poverty (i.e. the inability to par-ticipate fully in the community)

• linking poverty and economic vulnerabil-ity with other sources of exclusion suchas racism, disability, rejection of differ-ence and historic oppression

• finding common ground among thoseconcerned about the well-being of fami-lies with children to help generate greaterpublic and political will to act.

The Foundation commissioned a series ofworking papers to examine social inclusionfrom a number of perspectives. Although theauthors approach the topic from differentstarting points and emphasize different aspectsof exclusion and inclusion, there are importantcommon threads and conclusions. The work-ing papers draw attention to the new realitiesand new understandings that must be broughtto bear on the development of social policyand the creation of a just and healthy society.

Foreword: The Laidlaw Foundation's Perspective

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These are:

• Whether the source of exclusion is pover-ty, racism, fear of differences or lack ofpolitical clout, the consequences are thesame: a lack of recognition and accept-ance; powerlessness and ‘voicelessness’;economic vulnerability; and, diminishedlife experiences and limited life prospects.For society as a whole, the social exclusionof individuals and groups can become amajor threat to social cohesion and eco-nomic prosperity.

• A rights-based approach is inadequate toaddress the personal and systemic exclu-sions experienced by children and adults.People with disabilities are leading the wayin calling for approaches based on socialinclusion and valued recognition to deliverwhat human rights claims alone cannot.

• Diversity and difference, whether on thebasis of race, disability, religion, culture orgender, must be recognized and valued.

The ‘one size fits all approach’ is no longeracceptable and has never been effective inadvancing the well-being of children andfamilies.

• Public policy must be more closely linkedto the lived experiences of children andfamilies, both in terms of the actual pro-grams and in terms of the process forarriving at those policies and programs.This is one of the reasons for the growingfocus on cities and communities, as placeswhere inclusion and exclusion happen.

• Universal programs and policies that serveall children and families generally providea stronger foundation for improving well-being than residual, targeted or segregatedapproaches. The research and anecdotalevidence for this claim is mounting fromthe education, child development andpopulation health sectors.

Understanding social inclus ion

Social exclusion emerged as an importantpolicy concept in Europe in the 1980s inresponse to the growing social divides

that resulted from new labour market condi-tions and the inadequacy of existing social wel-fare provisions to meet the changing needs ofmore diverse populations. Social inclusion isnot, however, just a response to exclusion.

Although many of the working papers usesocial exclusion as the starting point for theirdiscussions, they share with us the view thatsocial inclusion has value on its own as both aprocess and a goal. Social inclusion is aboutmaking sure that all children and adults areable to participate as valued, respected and

contributing members of society. It is, there-fore, a normative (value based) concept - a wayof raising the bar and understanding where wewant to be and how to get there.

Social inclusion reflects a proactive,human development approach to social well-being that calls for more than the removal ofbarriers or risks. It requires investments andaction to bring about the conditions for inclu-sion, as the population health and internation-al human development movements have taughtus.

Recognizing the importance of differenceand diversity has become central to new under-


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standings of identity at both a national andcommunity level. Social inclusion goes onestep further: it calls for a validation and recog-nition of diversity as well as a recognition ofthe commonality of lived experiences and theshared aspirations among people, particularlyevident among families with children.

This strongly suggests that social inclu-sion extends beyond bringing the ‘outsiders’in, or notions of the periphery versus the cen-tre. It is about closing physical, social andeconomic distances separating people, ratherthan only about eliminating boundaries orbarriers between us and them.

The cornerstones of social inclus ion

The working papers process revealed thatsocial inclusion is a complex and chal-lenging concept that cannot be reduced

to only one dimension or meaning. The work-ing papers, together with several other initia-tives the Foundation sponsored as part of itsexploration of social inclusion , have helped usto identify five critical dimensions, or corner-stones, of social inclusion:

Valued recognition– Conferring recognitionand respect on individuals and groups. Thisincludes recognizing the differences in chil-dren’s development and, therefore, not equat-ing disability with pathology; supporting com-munity schools that are sensitive to culturaland gender differences; and extending thenotion to recognizing common worth throughuniversal programs such as health care.

Human development – Nurturing the talents,skills, capacities and choices of children andadults to live a life they value and to make acontribution both they and others find worth-while. Examples include: learning and devel-opmental opportunities for all children andadults; community child care and recreationprograms for children that are growth-promot-ing and challenging rather than merelycustodial.

Involvement and engagement – Having theright and the necessary support to make/beinvolved in decisions affecting oneself, familyand community, and to be engaged in commu-nity life. Examples include: youth engagementand control of services for youth; parentalinput into school curriculum or placementdecisions affecting their child; citizen engage-ment in municipal policy decisions; and politi-cal participation.

Proximity – Sharing physical and socialspaces to provide opportunities for interac-tions, if desired, and to reduce social distancesbetween people. This includes shared publicspaces such as parks and libraries; mixedincome neighbourhoods and housing; andintegrated schools and classrooms.

Material well being – Having the materialresources to allow children and their parents toparticipate fully in community life. Thisincludes being safely and securely housed andhaving an adequate income.

Foreword: The Laidlaw Foundation's Perspective

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Next s teps: Bui lding inclus ive c i t ies and communit ies

AcknowledgementsWe wish to thank the following for their contribution and commitment to the working papers serieson social inclusion: the authors, without whom there would be no working papers; Karen Swift,Frank Stark, Nancy Matthews, Jennifer Keck, Daniel Drache and the forty external reviewers ofpapers, all of whom provided critical feedback and expert advice at various stages during the editorialprocess; the members of the Advisory Committee, Children’s Agenda Program, Nathan Gilbert,Executive Director, and the Board of Directors, Laidlaw Foundation for their support, interest andcritical comments; and Larisa Farafontova, Eva-Marie Dolhai, and Richard Wazana, for theirperseverance and skillful assistance at critical stages in the process.

Over the next three years, the Children’sAgenda program of the LaidlawFoundation will focus on Building

inclusive cities and communities. The impor-tance of cities and communities is becomingincreasingly recognized because the well-beingof children and families is closely tied to wherethey live, the quality of their neighbourhoodsand cities, and the ‘social commons’ where peo-ple interact and share experiences.

The Laidlaw Foundation’s vision of asocially inclusive society is grounded in aninternational movement that aims to advancethe well-being of people by improving thehealth of cities and communities. Realizingthis vision is a long-term project to ensure thatall members of society participate as equallyvalued and respected citizens. It is an agendabased on the premise that for our society to bejust, healthy and secure, it requires the inclu-sion of all.

Christa FreilerChildren’s Agenda Program CoordinatorLaidlaw Foundation

Paul ZarnkePresident and Former Chair, Children’s Agenda Advisory Committee Laidlaw Foundation

This series is dedicated to the memory of Dr. Jennifer Keck who died on June 12, 2002

after a long battle with cancer.

Jennifer was a key member of the editorial committee,an insightful and passionate reviewer of the working papers,

and an unwavering advocate forsocial justice and the social inclusion of all people.

Thumbs Up! Inclusion, Rights and Equality as

Experienced by Youth with Disabilities

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Thumbs Up!Inclusion, Rights and Equality asExperienced by Youth with Disabilities

“All young people need things tochange.” Generations of adults havemade different interpretations of the

need for change to support children’s growthand promote their well-being. This paper –although subject to the inevitable limitationsof adult interpretation – seeks to examine therelationship between inclusion and equality,attempting to ground this inquiry in an activeconsideration of the experiences, perspectivesand voices of children and youth.

In particular, this paper centres upon theexperiences of young people with disabilities,seeking to better understand what social inclu-sion means to them and how its experientialreality links to fundamental concepts and prin-ciples of equality. This focus upon disabilityprovides a unique and important opportunityto highlight and reflect upon our responses tothe ‘hard questions’ of difference at both indi-vidual and policy levels. It is well recognizedthat the equality status of people with disabili-ties is jeopardized by deeply entrenched pat-terns of social exclusion, and that unequaltreatment in the context of disability most

often takes the form of denial of opportunitiesfor inclusive participation. As noted by theSupreme Court of Canada:

It is an unfortunate truth that the historyof disabled persons in Canada is largely oneof exclusion and marginalization. Personswith disabilities have too often been exclud-ed from the labour force, denied access toopportunities for social interaction andadvancement, subjected to invidious stereo-typing and relegated to institutions.... Thishistorical disadvantage has to a great extentbeen shaped and perpetuated by the notionthat disability is an abnormality or flaw. Asa result, disabled persons have not generallybeen afforded the “equal concern, respectand consideration” that s. 15(1) of theCharter demands. Instead, they have beensubjected to paternalistic attitudes of pityand charity, and their entrance into thesocial mainstream has been conditionalupon their emulation of able-bodiednorms.... One consequence of these attitudesis the persistent social and economic disad-vantage faced by the disabled. Statistics

Young people are always supposed to listen to adults, we are seldom taken seriously. We are the ones whohave to go through school; we are the ones who will have to deal with conflict when we are adults. Wehave to try out our ideas and practise ways of resolving conflicts. We want to make friends in our own way.We have to do that if we are going to learn about how to relate to each other. We want help from adultsbut on our terms. I think that all young people need things to change, not just disabled kids.2

Maresa Mackeith, Facilitated Communication User

Introduct ion: " In our own way.. . On our own terms"

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Thumbs Up! Inclusion, Rights and Equality As Experienced by Youth with Disabilities

indicate that persons with disabilities, incomparison to non-disabled persons, haveless education, are more likely to be outsidethe labour force, face much higher unem-ployment rates, and are concentrated at thelower end of the pay scale when employed. 3

In this context, it is not surprising thatchildren with disabilities experience socialexclusion to an extent greater than that of non-disabled children. According to a DisabilityInformation Sheet recently published by theCanadian Council on Social Development:

They [i.e., children with “special needs”]experience more bullying by other children.They are more likely than those with no spe-cial needs to feel unliked by their peers andto feel “left out.” They are also less likely tofeel safe at school. Although in most cases,the differences between children with specialneeds and those without special needs arefairly small, the differences do exist and theyextend into many facets of the social experi-ence.4

The presumption which underlies thispaper is that the experience of social exclusion

heightens awareness and appreciation for socialinclusion, and that this heightened awarenessand appreciation affords lively and abundantinsights well worth the attention of legal andpolicy theorists. Drawing from accounts pro-vided directly by young people with disabilitiesand their peers, this paper therefore contendsthat through the lens of disability we can mostclearly perceive the limitations of an exclusivefocus upon rights and legal entitlement, andrecognize the essential contribution of socialinclusion to the challenge of promoting,respecting and protecting lives of dignity andequality for all citizens.

This paper takes as its starting point, aseries of e-mail dialogues with six young peoplefrom Alberta, ranging in age from 15 to 18.5

Upon their instruction, these informants willbe identified by the following names: Aaron,Brandalyn Lofgren, Kyle, Linda, LynnseyHarder and Trevor. Two of these young peoplehave disabilities; the other four are involved insome close relational capacity with a disabledpeer. Their observations and reflections aboutinclusion ground the analysis that follows upona foundation of immediacy and authenticity.

At the outset of our conversations,Aaron, Brandalyn, Kyle, Linda,Lynnsey and Trevor were each asked

the foundational question: “What is inclu-sion?”

For the most part, these young peopledefined inclusion in terms of opportunity: theopportunity to participate; the opportunity toachieve; the opportunity to be seen and under-stood; the opportunity to belong:

Lynnsey: Inclusion to me is giving eachchild, teen and adult the opportunity to

join in and be included in whatever activ-ity is going on despite anything (disabili-ties, I.Q., etc.). 6

Some defined inclusion in terms of basicethical principles:

Trevor: Inclusion means friendships andtreating each other with caring andrespect.7

Other definitions were fundamentallyexperiential:

Aaron: Inclusion is being able to be with

Inclus ion: "To be who I am.. . To do what they do"


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kids my own age and do the things theydo and go where they go. Inclusion isbeing with them. Inclusion helps peoplesee that there is a lot more to me thanautism. It helps them see that I’m just aregular teenager. Inclusion is importantbecause it allows me to be who I am andto be with my friends and do what theydo. 8

Some recognized and articulated the cru-cial element of support to the exercise of indi-vidual agency:

Kyle: Inclusion is - being provided withall the supports that I need to be in a reg-ular classroom at school, do all the activi-ties in Scouts or anything else that I’dlike to try to do.9

For some, there is a transcendent qualityto inclusion - a recognition of self in the other,and an affirmation of universal human needsand aspirations:

Linda: Inclusion is seeing the abilities,not disabilities of everyone and support-ing every individual as to help themachieve their optimal potential. Inclusionis to look at someone’s soul and to seethem as a fellow human with emotions,feelings and desires like all of us.Inclusion is all this and so much more,but most importantly, inclusion is tomake those who may feel unincluded orisolated, included.10

Most striking was the emphasis that mostcontributors placed upon the twin values ofparticipation and acceptance:

Brandy: To me inclusion is belonging...being with everyone else, and feeling apart of what they’re doing. It is accept-ance, and knowing that you “fit in” (Iguess). You’re no different than any of theothers. You feel safe, secure, strong there.

You can be yourself. True inclusion doesnot come in degrees. It’s either there orit’s not. 11

In her recent feminist text subtitled“Experiencing and Understanding Disability”,Thomas has highlighted a duality of restrictiveforces operating in the lives of persons withdisabilities. On one hand are multiple barriersand restrictions that impede disabled persons’opportunities to act in the social world.Activists, policy-makers and commentatorsalike have paid much attention to the removalof such barriers and to the promulgation oflegal and regulatory standards that guaranteeaccess by disabled persons to public places,services and opportunities. Although muchremains to be done in terms of the implemen-tation of such standards and the dismantling ofphysical, structural and systemic barriers, thisnotion of access is well recognized - a straight-forward matter of bricks and mortar or lumber,nails and elbow grease, a matter of design andaccommodation, an issue of how resources andpriorities are allocated.

Kyle’s entreaty for supports to “do all theactivities... that I’d like to try to do”, Aaron’sdesire to be with his peers “and do the thingsthey do and go where they go” and Lynnsey’surgings for everyone to be “included in what-ever activity is going on” speak to a highlyprevalent phenomenon of exclusion frommainstream activity and opportunity - and sug-gest that inclusion demands vigilant attentionto barrier removal. An inclusive community,our informants tell us, is one in which oppor-tunities to act in the social world are not, asthe Supreme Court noted in Eldridge, “condi-tional upon [the] emulation of able-bodiednorms.”

On the other hand, according to Thomas,“there are additional, often intangible, dimen-sions to the social exclusion of people withimpairments.” The language and mechanisms

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of these restrictions are much less well under-stood, as are the forms of ‘access’ that counterthem. For disabled persons, a fulsome notionof access must go well beyond the mechanicalchallenge of entry into buildings or thebureaucratic challenge of eligibility for civicopportunities. Access must also be about mak-ing one’s way into citizenship and human com-munity and about feeling secure and worthy.Framed in this way, inclusion calls for engage-ment within a dynamic of access to respect,access to a sense of oneself as a whole personand access to identity as a valued contributor, abearer of rights, knowledge and power.

The notion of “belonging” that Brandyidentifies as synonymous with inclusion, elicitsan imperative of feeling “safe, secure, strong...[so that] you can be yourself.” These sameintangibles appear as well to underlie Trevor’semphasis upon “caring and respect” andLinda’s insights about truly “seeing” individualswith disabilities through the lens of our com-mon humanity. Aaron concludes:

Inclusion is important because it allowsme to be who I am and to be with myfriends and do what they do. [Emphasisadded]

His conclusion resonates strongly withThomas’s argument that:

[T]he focus should include not only aconcern for what ‘we do’ and ‘how weact’ (are prevented from doing and act-ing) as disabled people, but also a con-cern for ‘who we are’ (are prevented frombeing), and how we feel and think aboutourselves.

Upon this foundational account of inclu-sion as promoting freedoms both to do and tobe, we can now consider a set of “inclusionnarratives.” From the accounts that follow, itmay be possible to begin some preliminarysketching of how inclusive experiences shapenot only ‘what we do’ and ‘how we act’, butalso ‘who we are’, and ‘how we feel and thinkabout ourselves.’

I care about inclusion because it affects myfuture. I have dreams and if I am notincluded I will not be able to develop intothe person I want to be and to achieve mygoals....

Kyle

Kyle is 15 years old and a grade 9 stu-dent. He describes his disability in the follow-ing terms:

When I was 3, I had a drowning accidentthat left me with a brain injury, so now Iuse sign language or my Dynavox12

machine to speak to people.13

When asked to describe his earliest mem-ory of inclusion, Kyle has considerable difficul-

ty. According to his father, Kyle has “alwaysbeen included.” With some effort, however,he recalls the following experience:

My earliest memory of being includedwas when I was five years old and I wasincluded in Beavers. I was still in awheelchair. There were lots of boys myage; we began each meeting with a chant“Beavers, Beavers, Beavers. Sharing,Sharing, Sharing.” We also made a sign atthe same time with two fingers. I lovedbeing with the others boys; we playedgames and did crafts. One of the boyswould help me to do my craft and therewas always someone to push my wheel-chair so I could join in the games.

Inclus ion: "Shar ing, Shar ing, Shar ing"


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No one knew how to find a way for meto communicate at that time. But oneday my mom was eating some toast and Iwanted some. I remembered the sharingsign from Beavers and I made that sign tomy mom. It took her a while but shefinally clued in and figured out that Iwanted to share her toast. After thatMom decided that maybe we shouldlearn some sign language together. Itworked. 14

Kyle’s communication breakthrough isrecounted as a direct, albeit serendipitous, out-come of an inclusive Beavers program.Without diagnostic or clinical interventions,this “eureka” moment belonged to Kyle and hismother. Anecdotal accounts of this kind ofagency-enhancing triumph are a recurrentmotif in disability narratives. Children - andadults - discover latent capacities and resolveproblems that confound the experts. While it isbeyond the scope of this paper to draw conclu-sions of an empirical nature about this phe-nomenon, we can appreciate - at least intu-itively - a link between inclusion and thebroadening of exposures; between broadenedexposures and augmented individual reper-toires of possibility; between expanded reper-toires of tools and ideas and an increased likeli-hood of their successful application. As Kyleconcludes, “It worked!”

For Kyle and for the other young peoplefeatured in this article, inclusion worked inmore generalized ways as well. Almost withoutexception, these young people defined inclu-sion as primarily not a concept but an experi-ence - an experience of growth and discoveryuniversally regarded as both personally emanci-patory and socially rewarding. For each of theyoung contributors, inclusion confers the val-ued prize of friendship, and with that prize, acoming into being of a self connected to oth-ers, known, honoured and cared for.

Aaron, for example, presents the depth ofhis understanding of friendship in terms thatresonate with empathy and compassion:

I feel sorry for other people who don’thave friends.... I can have fun and behappy and be myself with my friends.... Ilike being with them and I am happywhen they are happy and sad when theyare sad and I smile at them and give themhugs and I like them to be with me allthe time.... They say hi to me and includeme in their activities and help me if Ineed it and sit with me and look after mewhen I need it and they care about mewhen I am happy or sad or mad or upsetand they hang out with me.

Aaron’s friend, Brandy, in her articulationof what makes a “REAL friend”, draws matureinsights from the wellspring of inclusion. Herfriend Aaron is ‘different’, but the differencethat counts for Brandy is ethical, rather thanfunctional or performative. On this scale,Aaron rises above his peer group and entersinto valued relationships of unconditionalfriendship:

Aaron is a REAL friend. The best friendthat a person could ask for. He doesn’tcare what your marks are, how well youcan play basketball, if you wear Nikeshoes and Tommy jeans, if you havecrooked teeth or zits on your face. He isthe best kind of friend because he showsunconditional friendship, no stringsattached!

As young people recount their experi-ences, it becomes clear that while mere physi-cal proximity is a precondition, it is in no waydeterminative of the experience of inclusion.Friendship is the distinctive and defining fea-ture of inclusion - friendship that is expressedfreely as a dimension of being, and exchangedwithout measure or consideration:

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Trevor: I don’t understand why [Kyle’smother] thinks I give so much to ourrelationship. She is always telling me thatI am giving so much to Kyle, but it neverseems that way. I am just being myself –the best way I can. Even after a year and ahalf I still don’t get it. 15

It is a rough and tumble friendship,rather than the ‘kid glove’ variety - friendshipin which both Kyle and Trevor can explore andexpress a fullness of selfhood, at work and play,in school and beyond, active and passive, ingood or bad temper:

Kyle: Some friends are just nice to you inschool; they help you with your work oreat lunch with you. Then there’s Trevor,he’s my best friend. We hang out togeth-er, have sleepovers, go to the mall, listento music, play video games, watchmovies, tease each other and laugh a lot.Trevor and I accept each other just theway we are. Most of the time whenTrevor and I are together we joke andhave a good time but we do bug eachother sometimes - that’s OK. It’s part ofbeing a good friend. 16

Notably, the quality of friendship thatdefines inclusion is quite distinct from thedreary alliance of fellow captives, as MaresaMackeith recalls in her remembering of child-hood experiences in segregated facilities for dis-abled children:

I have been to all types of schools. In thespecial school I was treated as if I didn’tunderstand anything. I tried to makefriends but we were all so badly treatedthat it was impossible to ever talk to eachother. I don’t want to see those peoplenow because I get so sad.17

In the experience of the young peopleinterviewed for this paper, the link between

one’s own sense of well-being and inclusion isstraightforward and irreducible. For Kyle andTrevor and Aaron, the question of ‘how we feeland think about ourselves’ is inextricablylinked to feelings of being included:

Kyle: It feels Thumbs Up to be includedand it feels really bad when you are not. 18

Trevor: It feels good to be includedbecause you know that somebody caresabout you, you have someone to trustand rely on. 19

Aaron: [If I were not included] I wouldbe at home all the time and would belonely and sad and angry. 20

Research by Jenkins and Keating con-firms that robust networks of social relation-ships such as peer friendships correlate stronglywith the development of childhood resilienceand ability to cope with external stress.Operating as a kind of “natural intervention”,feelings of connection to others have beendemonstrated to contribute to a sense of secu-rity, integration and purposefulness. For Kyle,the stress of peer harassment is kept in perspec-tive through a healthy sense of self forged inthe mint of inclusion:

The worst thing about being in school iswhen kids ignore you or call you a loserbut I think that happens to everyone notjust to kids with special needs...

Some people worry about everybodybeing in the same classes together. Iknow that I belong with my friends andthey belong with me. 21

The youths who contributed to this paperhighlighted themes of cooperation, trust andmutual support in their enumeration of thebenefits of inclusion. Aaron’s commentarybelow illustrates how inclusive friendships notonly support confidence in his present identity,


7

but enable him to push past fear at develop-mental thresholds. Inclusive friendships, wesee, support not only being, but also becoming:

Aaron: I can have fun with [my friends]and encourage them and concentrate bet-ter with my friends around....I would nothave the friends I have if I was notincluded. They are always there for meand are encouraging, supportive andhelpful. They give me confidence inmyself. I didn’t think I could take the bigstep of high school because I was soafraid, then I found out all my friendswere afraid too and it wasn’t so hard afterthat. We were all the same. 22

In their reflections upon inclusive friend-ship, the young people who participated in thisstudy did not appear to divide and differentiatealong lines of physiology or demonstrableintellectual capacity. Norms of behaviour,physicality and communication appear morefluid, with the process of defining self andother founded instead upon values and stan-dards of conduct. A true friend, as Brandydeclared above, is one who does not judge youby the logo on your sneakers or the “zits” onyour face. In another comment she illustratesthe value of acceptance in inclusive friendshipin relation to the delicate unfolding of adoles-cent identity:

When someone ignores you or yells at youwe usually tend to stay away from thatperson, but not Aaron, we always comeback and try again. Many people don’tintend for anything to become of theirfirst contact with Aaron but it alwaysdoes. People are drawn to him and alwayswant to be around him. Especially whenthey’re having a bad day. Just being withhim brings you all the comfort in theworld. He gives us reassurance withoutsaying a word. He seems to have an auraof acceptance about him. 23

The stranger, the alien in their midst isnot the one whose speech patterns or behav-iour mark him or her as different, but the onewho does not share in the value system ofinclusion - the “smart ass” new kid who makesa “big deal” out of the autistic boy’s behaviouris quickly and definitively put in his place byhis peers, and the bullying is stopped short.

Brandy: I would feel really sorry for thekid that decided to pick on Aaron,because everyone stands up for him underall circumstances. When a new kid cameto school and figured that he’d mentionsomething negative about Aaron, everysingle one of the guys in the class stoodup for Aaron and the subject didn’t goany farther. If Aaron had been in a dif-ferent class from ours or hadn’t grown upwith these kids and had such a close rela-tionship, this situation could very likelyhave been quite different...24

The meaning of inclusion to these youngpeople is therefore bound together with thequest for identity. ‘Who we are’ evolves and isnurtured through self-affirming relationships.Indeed, reciprocity is perhaps the single mostimportant element in the inclusion testimoni-als provided. The relationships described areuntainted by the charitable impulse of broadersocietal responses to disability, being insteadcharacterized by mutuality and respect:

Trevor: Kyle is fun to hang out with, henever stresses out on only one thing todo, and he takes things into considera-tion....

Tamara: Aaron made the classroom morefun and more exciting to learn. He is oneof the best friends I have had because ofhis autism. He listens to my problemsand he will not tell anyone. He is veryfun to be with and he is very smart. I amsure the other kids in my class that knew

8


Aaron will agree that he is very bright anda very good friend.

I think there should be more people likeAaron. The one thing I missed when Ileft Centennial School was Aaron.25

From these narratives we see that inclu-sion arises from an ethic not of tolerance, butof active valuation of difference. In the inclu-sive subculture from which Aaron and hisclassmates offer their reflections, Aaron’s grow-ing confidence takes root in a rich ground ofpeer respect, support and affection. In his easy

camaraderie with Trevor and others, Kyle mas-ters and manifests an identity of spirited self-assurance and irrepressible vitality. In highschool environments that critics of the systemhave decried as “the most dysfunctional institu-tions yet devised by the developed world”26,clusters of Edmonton youth co-create oases ofmutuality and engagement. The meaning ofinclusion is quick and vibrant, suggested - evenif never fully captured - in these images ofmutual ‘being’ and ‘becoming.’

Belonging. Such an achingly simple word.It conjures up some of our deepest yearnings,and for some of us, perhaps our mostpainful memories. Equality claims beginand end with a desire for belonging, forcommunity. Ideas of equality lie at theheart of the Canadian promise of commu-nity. Yet we know that communities arebuilt in two ways: by welcoming in, and bykeeping out.

The desire to belong is intense and pro-found. Each of us has a deeply personalexperience of that, which has been builtsince childhood. ...

Equality law seeks to protect and promotebelonging; to allow others into the fold, andto encourage and cement our bonds of com-munity. It is meant to do this by a subtleand complex mix of burden and benefit: theiron hand in the velvet glove.27

(Pentney 1996)

The one thing I don’t like about my schoolis that all the kids with special needs eatlunch in room twenty.28

Kyle

Aaron is 16 years old and a grade 10 stu-dent. Aaron has autism. From kindergartenthrough grade six, Aaron was included in all ofthe regular programming in his neighbourhoodelementary school. Toward the end of Aaron’ssixth grade year, he and his family were advisedthat Aaron would be grouped with other dis-abled youth and placed in a separate class injunior high school, with specific “inclusiveexperiences” to be provided in designated areas,such as physical education. On Aaron’s behalf,his family took legal action to challenge thisdecision, and to have Aaron continue to attendclasses with his non-disabled friends.Throughout the course of this legal process,Aaron pursued his grade seven education athome. Aaron’s friends from elementary schoolcame to his house after school and did theirhomework with him. They visited for lunchoccasionally on school days, and kept in touchthrough weekend activities at church, the localarena and swimming pool. They wrote lettersto the school board, supporting Aaron’s rightto a fully inclusive education:

Equal i ty and Exi le : Lunch in Room 20


9

Dear School Board,I think that Aaron should be in a regular class. He has been inone up until now so why switch?Aaron is my best friend and it is important that he is in a reg-ular class because otherwise he will not learn as much as he isable to. Aaron needs to be in a regular class so he will havelots of friends.Aaron has taught me lots of things and I think it is importantthat he is in the right class. My class.

Yours trulyTanner

After an academic assessment at the con-clusion of his seventh grade year, Aaron waspermitted to join his friends in junior highschool. According to his mother, “Aaron notonly adjusted to the changes from home tojunior high, he sailed in and never lookedback.”29

For Aaron, his family and friends, as formany other Canadian families whose disabledchildren are denied the opportunity to fullyinclusive educational services,30 the issue is oneof entitlement and rights rather than one of‘professional’ judgment and institutional policy.Aaron’s friend Brandy sees it this way:

We all have our differences. Some kidshave difficulty writing, others (like me)understanding things like weird poetry orstories. Whatever the case, we all strugglewith different things - some more thanothers, but that is no reason to singlethem out from everyone else. Societywould not consider dividing people up bytheir hair colour, or whether they woreglasses or not, so why should kids like myfriend Aaron be any different? Some peo-ple may call it specialized learning, but Icall it prejudice.31

Enter the iron hand in the velvet glove.Canadian equality law, expressed in section 15of our Charter and in federal and provincialhuman rights legislation, has taken us a gooddistance toward exposing the prejudice thatBrandy refers to and uprooting deeply embed-ded patterns of discrimination and disadvan-tage. Equality rights jurisprudence has provid-ed important legal and analytical tools forremediation and redress, whenever discrimina-tion - either direct or indirect - is found inpublic or private actions, policies and systems.Upon closer examination, however, weencounter inherent limitations to therights/equality paradigm in uprooting the “per-sistent social and economic disadvantage”32

faced by disabled persons. Rights, it seems, areoriented toward what ‘we do’ and ‘how we act’,offering legal recourse to persons excluded frommainstream activity and opportunity. On theother hand, questions of ‘who we are’ and ‘howwe feel and think about ourselves’ may be lessreadily justiciable, particularly in a social, legaland policy context characterized by an uncon-scious but pervasive majoritarian bias - a cli-mate that makes “entrance into the socialmainstream... conditional upon [the] emula-tion of able-bodied norms.”33

What does our justice system offer tochildren and/or families of children who havebeen excluded from community participation?Although it is beyond the scope of this paperto fully map developments and precedents inCanadian human rights and equality jurispru-dence likely to bear upon such claims, it will beinstructive for the present purpose to reviewtwo significant cases where young people withdisabilities have been directly involved as plain-tiffs. The first of these is Youth BowlingCouncil of Ontario v McLeod34, a 1990 decisionof the Ontario Divisional Court.

The complainant in this case was TammyMcLeod, an 11-year-old girl with cerebral palsy

10


who, beginning at the age of 6, had participat-ed in recreational bowling at an alley near herhome in Strathroy, Ontario. Tammy bowledwith the assistance of a wooden ramp, the topend of which rested in her lap while she sat ona chair behind the foul line. Her mother wouldplace the ball at the top of the ramp andTammy would line up the ramp to direct theball, then push it down the ramp.

Tammy was registered with the OntarioYouth Bowling Council and in 1985 qualifiedwith other children from her area to competein the Council’s zone tournament. However,Tammy was not allowed to compete in thetournament because the Council ruled thatTammy was ineligible as long as she used aramp to deliver the ball.

A Human Rights Board of Inquiry in1988 ordered the Council to allow Tammy tocompete using the ramp and to enact a newrule which would provide for the accommoda-tion of young disabled bowlers. The Councilappealed this decision, arguing that “for a tour-nament to represent a fair contest, a fair com-parison of the skills of the participants, it wasessential that the participants make use of thesame physical attributes.”35

In dismissing this appeal and upholdingthe Board of Inquiry decision, the Courtnoted:

The integration of handicapped and non-handicapped bowlers achieves a major aimof the public policy of Ontario as enunciat-ed in the preamble to the [Human Rights]Code. To exclude the handicapped from thetournament setting when they are welcome... in the non-tournament setting is notacceptable in the absence of an over-ridingreason. The suggested reason is the effectupon the fairness of the tournament but onthe evidence such an effect from Tammy'sparticipation - or a dozen Tammys for thatmatter - would be minuscule.

The unspoken premise underlying theCouncil’s argument is, I think, as follows:that the degree of organization of the tour-nament, its prestige, its nation-wide scopeand its declaration of a champion precludeparticipants employing assisting devices. Icannot accept the premise that a sportingtournament however organized, howeverwidespread, however prestigious, is therebyexempt from the reach of the remedial effectsof the Code. The use of otherwise sanc-tioned aids in the tournament setting is notan undue hardship to the Council.

There is no evidence of hardship to the com-petitors. They are not required to alter themanner in which they bowl in any way.The evidence is clear that Tammy’s devicegives her no competitive advantage overothers. Her ball speed is low. She cannotsignificantly vary the velocity of the ball –an important competitive element; nor canshe impart spin to it, which according tothe Council’s expert is one key to success. ...No evidence was given by any competitorcomplaining of Tammy’s device. The chil-dren appear to be completely accepting ofher.36

For Tammy, the outcome of a three-yearprocess of litigation was an affirmation of herright to participate in the inclusive recreationalactivity of her choice. For Aaron, the outcomeof a one-year process of advocacy and homeschooling37 was an affirmation of his right toparticipate in a fully inclusive high school set-ting. In both cases, cherished principles ofequality were invoked successfully “to protectand promote belonging.” But in neither case,however, was an absolute right to inclusionaffirmed. For Tammy, the court's judgmentappears to attach considerable significance to:

• The absence of complaints by Tammy'speers;


11

• The absence of any necessity for others toadapt their manner of play; and

• Tammy’s continued competitive disad-vantage.

For Aaron, as we have seen above, alengthy trial process was circumvented by aformal assessment that demonstrated academicparity with his peers. Although at times hisbehaviour and methods of communicationdeparted from social norms, his academic apti-tude - to his benefit - conformed to those samenorms. In ways that directly parallel the suc-cess of Tammy's claim, we can see that thesupport of Aaron’s peers, the fact that hewould require no “special treatment” thatmight be interpreted as privileging and theabsence of any necessity for major overhaul tothe high school program - all of these factorsweighed significantly in the success of hisclaim for an inclusive school placement.

Aaron’s experience contrasts sharply withthe second case presented here for review:Eaton v Brant County Board of Education. Thiscase centered upon the educational placementof Emily Eaton, a 12-year-old child with mul-tiple disabilities. For the first three years ofher education, Emily, with the assistance of afull-time educational assistant, had attendedregular classes alongside her non-disabled peersin the local public school. Upon the identifi-cation of concerns over Emily’s increasing iso-lation within a “theoretically integrated set-ting”, the Identification, Placement, andReview Committee of her county’s schoolboard had determined that Emily - like Aaron- should be placed with other disabled childrenin a segregated special education class. Emily’sparents opposed this decision, arguing forEmily’s continued access to inclusive educa-tion, and pursuing the case through severallevels of appeal, up to the Supreme Court ofCanada.

The Ontario Court of Appeal ruling ofMadame Justice Arbour in Eaton examined themeaning of exclusion in a broad social context:

In all areas of communal life, the goal pur-sued by and on behalf of disabled persons inthe last few decades has been integrationand inclusion. In the social context, inclu-sion is so obviously an important factor inthe acquisition of skills necessary for each ofus to operate effectively as members of thegroup that we treat it as a given. Isolationby choice is not necessarily a disadvantage.People often choose to live on the margin ofthe group, for their better personal fulfill-ment. But forced exclusion is hardly everconsidered an advantage. Indeed, as a socie-ty, we use it as a form of punishment. Exileand banishment, even without more,would be viewed by most as an extremelysevere form of punishment. Imprisonment,quite apart from its component of depriva-tion of liberty, is a form of punishment byexclusion, by segregation from the main-stream. Within the prison setting, furthersegregation and isolation are used as disci-plinary methods. Even when prisoners aresegregated from the main prison populationfor their own safety, the fact that they willhave to serve their sentences apart from themain prison population is considered anadditional hardship.38

The Ontario Court of Appeal ruled thatthe decision to educate Emily in a special class-room for disabled students - against her wishesas expressed by her legal representatives - wasdiscriminatory within the meaning of section15 of the Charter. The Court directed that“unless the parents of a disabled child consentto the placement of that child in a segregatedenvironment, the school board must provide aplacement that is the least exclusionary fromthe mainstream and still reasonably capable ofmeeting the child's special needs.”39 In her

12


decision, Madame Justice Arbour noted thereciprocity of benefit that is the characteristicendowment of the inclusive relationships high-lighted earlier in this paper:

Inclusion into the main school population isa benefit to Emily because without it, shewould have fewer opportunities to learnhow other children work and how they live.And they will not learn that she can livewith them, and they with her.

... The loss of the benefit of inclusion is noless the loss of a benefit simply becauseeveryone else takes inclusion for granted.40

Regrettably, the decision of the OntarioCourt of Appeal was ultimately overturned bythe Supreme Court of Canada, and theTribunal’s placement of Emily in a special edu-cation class was upheld. Mr. Justice Sopinka,writing for the majority, endorsed the principlethat “integration should be recognized as thenorm of general application because of thebenefits it generally provides.”41 He framedhis judgment, however, in terms that placedEmily’s ‘differences’ central to the analysis, con-cluding that her “actual personal characteris-tics” (i.e., her impairments) were such that sherequired a special educational placement “inorder to achieve equality.” Disability discrimi-nation, unlike other forms of discrimination,according to Justice Sopinka:

... will frequently require distinctions to bemade taking into account the actual person-al characteristics of disabled persons...

... [D]isability, as a prohibited ground, dif-fers from other enumerated grounds such asrace or sex because there is no individualvariation with respect to these grounds.However, with respect to disability, thisground means vastly different thingsdepending upon the individual and the con-text.42

Within a framework described by JusticeSopinka as “the difference dilemma”, whatamounts to discrimination against one personwith a particular kind or degree of impairment(such as Tammy or Aaron) may amount toequal treatment of another person with a dif-ferent kind or degree of impairment (such asEmily). According to the Court, exclusion orsegregation might be “both protective of equal-ity and violative of equality depending uponthe person and the state of disability.”43

Within such a framework, difference mat-ters profoundly. Distinctions must be madealong lines of demonstrable physical and intel-lectual function in order to determine ‘suitable’routes to equality. The more fluid norms andthe value-based categories modelled by Aaron,Brandy, Kyle, Linda, Lynnsey and Trevor, standfar removed from this analysis. The questionidentified by the Court as pivotal in Eaton waswhether “the individual [in this case, Emily]can profit from the advantages that integrationprovides.”44 Emily herself, rather than herschool environment, became the focus of inter-rogation. At the end of the day, given the par-ticular nature and extent of her impairments,the Court assessed that the Tribunal had bal-anced Emily’s “various educational interests...,taking into account her special needs, and con-cluded that the best possible placement was inthe special class.”45 The Court determined thatno equality rights violation could be found inEmily’s involuntary assignment to an exclusion-ary school placement.

While the Court in Eaton acknowledged aqualified ‘right’ to inclusion, the Court’s explo-ration of the roots of exclusion may be tracedback to the more conventional conceptions ofdisability disadvantage related to ‘acting’ and‘doing’, but perhaps eclipsing those related to‘being’ and ‘belonging’:

Exclusion from the mainstream of societyresults from the construction of a society


13

based solely on “mainstream” attributes towhich disabled persons will never be able togain access. Whether it is the impossibilityof success at a written test for a blind per-son, or the need for ramp access to a library,the discrimination does not lie in the attri-bution of untrue characteristics to the dis-abled individual. The blind person cannotsee and the person in a wheelchair needs aramp. Rather, it is the failure to make rea-sonable accommodation, to fine-tune societyso that its structures and assumptions do notresult in the relegation and banishment ofdisabled persons from participation, whichresults in discrimination against them. Thediscrimination inquiry which uses “theattribution of stereotypical characteristics”reasoning as commonly understood is simplyinappropriate here. It may be seen rather asa case of reverse stereotyping which, by notallowing for the condition of a disabledindividual, ignores his or her disability andforces the individual to sink or swim withinthe mainstream environment. It is recogni-tion of the actual characteristics, and rea-sonable accommodation of these characteris-tics which is the central purpose of s. 15(1)in relation to disability.46

A critique of the Eaton decision mustbegin with some recognition that Emily’s func-tional capacities might be directly relevant tothe kinds of accommodations needed in orderfor her to communicate, to participate and tolearn in a classroom environment. To thisextent, her actual characteristics, like those ofthe blind person or the wheelchair user inJustice Sopinka’s examples above, do perhapsmerit taking into account “in order to achieveequality.” This first phase of analysis wouldindeed be essential background to the interro-gation not of Emily’s eligibility for inclusion,but rather of the appellant school board's prac-tices - framing the question around whetherthe Board had in fact forced Emily “to sink or

swim within the mainstream [classroom] envi-ronment”, enabling or obstructing her oppor-tunities to act in the social world.

Whether or not this different framing ofthe question would have led to a morefavourable outcome in the Eaton case is moot -as, ultimately was the decision itself.Following the Tribunal’s initial move to con-sign Emily to a segregated class, the Eatonfamily had undertaken the transitions neces-sary to transfer Emily to an inclusive classwithin the separate school system. Indeed,although the factual record before the Courtincluded little or no evidence of this, at thetime of the court’s decision Emily had alreadyenjoyed several years of the same kind of posi-tive and successful inclusion described inAaron’s story. Perhaps, like Aaron, Emily“sailed in and never looked back.”

Nevertheless, the legal outcome in EmilyEaton’s equality claim highlights certain funda-mental inadequacies in a rights analysis thatpreserves what Martha Minow coincidentallyalso described as “the dilemma of difference” .Superficial implementation of a kind of ‘exclu-sionary inclusion’ - placing disabled childrenunsupported and without creative interventionin classrooms that are already too large andunder-resourced - leaves them vulnerable to anequality analysis that sees their differences as“residing in themselves.”47 Such an analysis per-petuates their disadvantage by imposing condi-tions upon inclusion, once again holding outthe offer of equal participation as contingentupon their capacity to emulate valued socialnorms.

Instead of focusing upon the kinds ofrelationships that need to be cultivated toensure a young person’s well-being, leading to acritical exploration of resources and methodsmost likely to yield this result, conventionalrights discourse may relegate to Lunch in Room20, children whose differences confound the

14


imaginations of those empowered to affirmand protect their being and belonging.Distinctions made on the basis of “actual per-sonal characteristics”, are surely neither relevantnor appropriate in the context of determiningan individual’s access to relationship, mutuality,respect and selfhood.

The equality rights framework clearly andproperly gives those who seek to challenge bar-riers to full participation a persuasive languagein which to frame their assertions and a legalforum in which to advance their arguments.Rights-based mechanisms, however, may be

better suited to remedy restrictions upon activ-ity than they are to remedy restrictions upon‘being’ and ‘belonging.’ Moreover, the effec-tiveness of equality doctrine in securing a rightto inclusion in hotly contested cases remainsfar from certain. The unfolding of bothTammy and Aaron’s claims, however, suggeststhat prior inclusive experiences enhance thelikelihood of success in the assertion of rights-based claims. To the extent that inclusionforges relationships of mutual regard andrespect, these relationships may accord somelevel of resilience and surety to rights entitle-ment.

To rescue our children we will have to letthem save us from the power we embody:we will have to trust the very differencethat they forever personify.48

June Jordan, U.S. Poet & Civil Rights Activist

As this paper began with the voices ofyouth, fleshing out meanings of inclusiondrawn from the pulse of experience, it isappropriate to turn again to the same contrib-utors in shaping the study’s conclusion. As welisten for guidance and correction, seeking tomobilize ‘the power we embody’ as educators,analysts, policy-makers, electors and decision-makers, we must do so in a manner that sup-ports young people’s quest for justice andinclusion.

How has the exercise of adult governanceinfluenced the experiences of inclusiondescribed by these young people? Whatimpact and contribution do they attribute toadults in positions of authority?

Lynnsey is 17 years old and a grade 12student. Lynnsey’s youngest brother has DownSyndrome and some hearing difficulties.

Lynnsey regrets that her brother has beendenied the opportunity to receive his educa-tion in an inclusive classroom. Her sensitivityto this injustice informs many of her interac-tions and social encounters:

When I was younger I was attending aChristmas Party and there was a bunch ofkids there - one with Tourette’s, a son ofmy mother’s friend. There was a group ofus who were going to go swimming inthe pool - me and this other girl suggest-ed we should invite him to swim with us.

That’s when an adult spoke up and saidthat probably wasn’t a very good ideabecause we might have a hard time get-ting along with him. Being surroundedby children with disabilities my whole lifeI thought this was a weird thing to say.Needless to say, me and that girl neverwent swimming but made a friend!49

For Lynnsey, the adult’s cautionaryinjunction was simply “a weird thing to say”,irrational, but happily circumventable. For anumber of the other youth contributors, adultprohibitions to inclusion were seen as more

Conclus ion: An Appet i te for Involvement


15

seriously problematic:

Linda: I personally think that manyteachers fear inclusion, they fear that it issomething too expensive, too difficultand somehow they feel they don’t knowhow to react or even approach studentswith developmental disabilities, and sothey react to these feelings by stating theyare against it or don’t believe in it.50

Linda’s analysis of adult behaviour inresponse to unspoken, unacknowledged feel-ings is acutely perceptive. Her observationsinvite us to critical self-reflection regarding theextent to which arguments based on economic“realities” or logistical “impracticalities” maymask deeper feelings of inadequacy and inex-perience, vestiges perhaps of the very system ofexclusionary practice through which manyadults grew to maturity.

She reminds us that she and her peers areready to take up the challenge – and theopportunity – that we deny them: to lead,from the place of our hindrance:

I believe fellow students in a high schoolwould like to figure out how to help outa fellow classmate with a disability if theyare given the chance. It appears the atti-tudes of teachers and principals act asmajor obstacles to our having this oppor-tunity. 51

Kyle speaks convincingly of adults whochronically underestimate his abilities. Hehighlights the recurring interference of rigidthinking and other adult inhibitions to creativ-ity – patterned tendencies that are fatal to theproject of inclusion:

Sometimes inclusion is difficult at schoolbecause sometimes people do not believethat I can do things and don’t even giveme a chance. When people’s expectationsare set it gets in the way of inclusion hap-

pening because they don’t use their imagi-nations to find ways to make it happen.52

For Lynnsey, Linda and Kyle, the exerciseof adult authority in the lives of disabled chil-dren undercuts the compelling logic of inclu-sion with the blunt violence of stereotype, fore-closure and devaluation. Their observationsare supported by other research that exploresthe experiences and perspectives of disabledchildren. Shakespeare et al. highlight the extentto which adult behaviour and social settingsdefine, reinforce and legitimize categories ofdifference and inferiority that disabled childrenmust actively resist in their attempts to con-struct autonomous, competent and interde-pendent identities. They suggest that “theinstitutionalization of difference seemed to bean unconscious justification of the segregatedpractices found in many schools”. Antle et al.noted in their study of transitions to independ-ence that young people with disabilities werecompelled to “blast away at low expectations”,especially in educational systems, mirroring theexperience of American disability activist EdRoberts 40 years earlier. Middleton, as well,documents the extent to which disabled youthin her study “felt written off and patronized”,deprived by low expectations and lack ofopportunity .

Social inclusion can be understood aseither a process or an outcome. As a process,social inclusion invokes us to cultivate in allchildren an appetite for involvement, self-expression and self-discovery, along with awell-founded expectation that their participa-tion will be welcomed, their choices supported,their contributions valued and their integritysafeguarded. As an outcome, social inclusionshows itself in communities that afford a rangeof meaningful and respectful opportunities forchildren’s involvement, expression and discov-ery, consistently and concurrently promotingchildren’s ‘being’ and ‘becoming’, as well astheir ‘doing’ and ‘acting.’

16


The relationship between inclusion andequality can be seen, through the lens of dis-ability, as a relationship of two distinct, integraland complementary principles, both operatingin the service of just social outcomes. Just asthe principle of equality is expressed in the cur-rency of rights, the principle of inclusion isexpressed in the currency of relationships.Standing like pillars of equal weight and pro-portion, they command us to equal attentionand regard. Each is weakened in the absence ofthe other; each reinforces the imperative of theother for the securement of human dignity andwell-being.

This paper has attempted to highlight therole of children and youth as social agents,seeking to exercise autonomy and choice, toassert values and identity and to influence theinstitutional and political culture within whichtheir dreams for the future must take root.The extent to which rights and rights discoursecan be used as tools to support these processeswill depend in large measure upon our capacityto abandon hierarchies of difference and tonegotiate new relationships of mutuality, empa-thy and respect.

The question of equality is the meaning ofequal moral worth, given the reality that inalmost every conceivable concrete way weare not equal but vastly different and vastlyunequal in our needs and abilities. Theobject is not to make these differences disap-pear when we talk about equal rights, butto ask how we can structure relations ofequality among people with many differentconcrete inequalities. 53

We conclude this paper with the sugges-tion that although we may be vastly unequal inour needs and abilities, we are much more likeone in our need, desire and capacity for humanconnection.


17

Endnotes1 The author extends her appreciation to a number of young Canadians who presented in a panel

entitled “Inclusive Education” at the Canadian Association for Community Living First NationalFamily Conference in Edmonton, Alberta on October 21, 2000. Much of the content of thisarticle reflects upon their presentations and draws directly from e-mail exchanges with the authorfollowing the conference. These contributors have chosen to be identified by the followingnames: Aaron, Brandalyn Lofgren, Kyle, Linda, Lynnsey Harder and Trevor. Thanks also go toHeather and Paul Kohl, Brian Lillo and Vanessa Grimm for their assistance in facilitating thesedialogues.

2 Maresa Mackeith. "The Importance of Friendship." Presented using facilitated communication,1999.

3 Eldridge v British Columbia (Attorney General) (1997).

4 Canadian Council on Social Development, Disability Information Sheet (Ottawa: CanadianCouncil on Social Development, 2001). See also, L. Hanvey, Children and Youth with SpecialNeeds (Ottawa: Canadian Council on Social Development, 2001).

5 At time of research interviews.

6 Lynnsey Harder, e-mail to author, 14 December 2000. At time of interviews, Lynnsey was 17years old and a grade 12 student.

7 Trevor, e-mail to author, 15 January 2001. At time of interviews, Trevor was 15 years old and agrade 9 student.

8 Aaron, e-mail to author, 12 April 2001. At time of interviews, Aaron was 16 years old and agrade 10 student.

9 Kyle, e-mail to author, 15 January 2001. At time of interviews, Kyle was 15 years old and agrade 9 student.

10 Linda, e-mail to author, 20 December 2000. At time of interviews, Linda was 18 years old and afirst-year college student.

11 Brandy Lofgren, e-mail to author, 9 April 2001. At time of interviews, Brandy was 16 years oldand a grade 10 student.

12 A computerized augmentative communication device for non-speaking individuals.

13 Kyle, "Inclusive Education" (panel at the Canadian Association for Community Living FirstNational Family Conference, Edmonton, 21 October 2000).

14 Kyle, e-mail, 18 January 2001.

15 Trevor, "Inclusive Education" (panel at the Canadian Association for Community Living FirstNational Family Conference, Edmonton, 21 October 2000).

18



17 Mackeith, “The Importance of Friendship.”


19 Trevor via Kyle, e-mail, 15 January 2001

20 Aaron, "Inclusive Education" (panel at the Canadian Association for Community Living FirstNational Family Conference, Edmonton, 21 October 2000).


22 Aaron, e-mail, 12 April 2001.

23 Brandy Lofgren, "Inclusive Education" (panel at the Canadian Association for Community LivingFirst National Family Conference, Edmonton, 21 October 2000).

24 Ibid.

25 Tamara, letter to Mr. Herbert Seder, Deputy Superintendent, Wetaskiwin Regional PublicSchools, 20 August 1997.

26 M. Wente, "Let's Trash All High Schools," The Globe and Mail, 7 April 2000, p. 15.

27 W. Pentney, "Belonging: The Promise of Community - Continuity and Change in Equality Law1995-96," Canadian Human Rights Reporter (1996).


29 Aaron’s mother, e-mail, 9 April 2001.

30 See, for example, the recent Ottawa case of nine-year-old Zachary Bonnah, whose father wascharged with trespassing after making repeated attempts to take Zachary to school on days whenspecial education assistants (allocated by the Board for only two days a week) were not available. J.Rupert, "Love versus the Law: A Father Defends His Actions," The Ottawa Citizen, 2000.

31 Brandy Lofgren, "Inclusive Education" (panel at the Canadian Association for Community LivingFirst National Family Conference, Edmonton, 21 October 2000).



34 Youth Bowling Council of Ontario v McLeod, in C.H.R.R. (Ont. Div. Ct. 1990).

35 Ibid., para. 32.

36 Ibid., para. 33-35.


19

37 Aaron’s mother, e-mail, 16 April 2001. According to Aaron’s mother, neither she nor any ofAaron’s teachers knew that he was capable of working at grade-level curriculum until his year ofhome schooling. The academic assessment that demonstrated this fact proved to be crucial innegotiating his acceptance back into school, without the necessity of a lengthy trial process.

38 Eaton v Brant (County) Board of Education, 22 O.R. (3d) 1 (C.A.) (1995): 15.

39 Eaton v Brant County Board of Education, 1 S.C.R. 241 (1997): 40.

40 Eaton v Brant (County) Board of Education, 22 O.R. (3d) 1 (C.A.) (1995): 15-16.

41 Eaton v Brant County Board of Education, 1 S.C.R. 241 (1997): 69. Itis worth noting, as was pointed out by O. Endicott in an unpublished paper entitled “Key Trendsin Case Law Pertaining to Supports for Persons with Disabilities” that:

The Supreme Court continued to endorse inclusion as the constitutional norm in 2000, when Justice Binnie in the Granovsky judgment re-asserted Justice Sopinka’s words and reinforced them with a quotation from Justice Thurgood Marshall’s dissent in the U.S. Supreme Court decision in Cleburne v. Cleburne Living Centre Inc., where he wrote that exclusion “deprives the [disabled] of much of what makes for human freedom and fulfilment - the ability to form bonds and to take part in the life of a community.”

42 Eaton v Brant County Board of Education, 1 S.C.R. 241 (1997): 66, 69.


44 Ibid.

45 Ibid. at 76.


47 M. Minow, Making All the Difference: Inclusion, Exclusion and American Law (Ithaca, NewYork: Cornell University Press, 1990).

48 June Jordan, “Old Stories: New Lives” (keynote address to Child Welfare League of America,1978). Published in Moving Towards Home: Political Essays (1989).

49 Lynnsey Harder, e-mail, 14 December 2000.

50 Linda, e-mail, 20 December 2000.

51 Linda, letter to School Superintendent Emery Dosdall, 12 August 2000.


53 Jennifer Nedelsky, “Reconceiving Rights as Relationship,” Review of Constitutional Studies 1,no. 1 (199): 21.

20


Antle, B., and C. Frazee. 1999. Creating a Life of Your Own: Experiences of Transition to Independenceamong People with Physical Disabilities. Toronto: West Park Hospital, Gage Transition to IndependentLiving.

Canadian Council on Social Development. 2001. Disability Information Sheet. Ottawa: CanadianCouncil on Social Development.

Eaton v Brant (County) Board of Education. 1995. 22 O.R. (3d) 1 (C.A.).

Eaton v Brant County Board of Education. 1997. 1 S.C.R. 241.

Endicott, O., "Key Trends in Case Law Pertaining to Supports for Persons with Disabilities." Unpublishedpaper.

Hanvey, L. 2001. Children and Youth with Special Needs. Ottawa: Canadian Council on SocialDevelopment.

Holtzberg, M., and B. Howard. 1996. Portrait of Spirit: One Story at a Time. Oakville: DisabilityToday Publishing Group Inc.

Jenkins, J., and D. Keating. 1998. Risk and Resilience in Six- and 10-Year-Old Children. Ottawa:Applied Research Branch, Strategic Policy, Human Resources Development Canada.

Mackeith, M. 1999. The Importance of Friendship. Available at Web Site: http://www.parentsforinclu-sion.org/voices.htm.

Middleton, L. 1999. Disabled Children: Challenging Social Exclusion. Oxford: Blackwell ScienceLimited.

Minow, M. 1990. Making All the Difference: Inclusion, Exclusion and American Law. Ithaca, New York:Cornell University Press.

Nedelsky, J. 1993. Reconceiving Rights as Relationship. Review of Constitutional Studies 1, no. 1: 21.

Pentney, W. 1996. Belonging: The Promise of Community. Continuity and Change in Equality Law1995-96. Canadian Human Rights Reporter.

Rupert, J. 2000. Love versus the Law: A Father Defends His Actions. The Ottawa Citizen.

Shakespeare, D. T., D. M. Priestley, et al. 1999. Life as a Disabled Child: A Qualitative Study of YoungPeople's Experiences and Perspectives. Leeds: Disability Research Unit, University of Leeds.

Thomas, C. 1999. Female Forms: Experiencing and Understanding Disability. Buckingham: OpenUniversity Press.

Wente, M. 2000. Let's Trash All High Schools. The Globe and Mail, 7 April.

Youth Bowling Council of Ontario v McLeod. 1990. C.H.R.R., Ont. Div. Ct. D/120.

Biblography

PUBLISHED IN 2002-2003

Clyde Hertzman — Leave No Child Behind! Social Exclusion and ChildDevelopment

Dow Marmur — Ethical Reflections on Social Inclusion

Andrew Jackson and Does Work Include Children? The Effects of the LabourKatherine Scott — Market on Family Income, Time, and Stress

Michael Bach — Social Inclusion as Solidarity: Re-thinking the ChildRights Agenda

Martha Friendly and Social inclusion for Canadian Children through Donna Lero — Early Childhood Education and Care

Meg Luxton — Feminist Perspectives on Social Inclusion andChildren’s Well-Being

Terry Wotherspoon — The Dynamics of Social Inclusion: Public Educationand Aboriginal People in Canada

Peter Donnelly andJay Coakley — The Role of Recreation in Promoting Social Inclusion

Andrew Mitchell and Richard Shillington — Poverty, Inequality, and Social Inclusion

Catherine Frazee — Thumbs Up! Inclusion, Rights and Equality asExperienced by Youth with Disabilities

Anver Saloojee — Social Inclusion, Anti-Racism and DemocraticCitizenship

Ratna Omidvar and Immigrant Settlement and Social Inclusion in CanadaTed Richmond —

PERSPECTIVES ONSOCIAL INCLUSION W O R K I N G

P A P E RS E R I E S

The full papers (in English only) and the summaries in French andEnglish can be downloaded from the Laidlaw Foundation’s

web site at www.laidlawfdn.org under Children’s Agenda/Working Paper Series on Social Inclusion

orordered from [email protected]

Price: $11.00 full paper; $6.00 Summaries(Taxes do not apply and shipment included).

Documents

Thumbs Up! - Laidlaw Foundation · Thumbs Up! Inclusion, Rights and Equality as Experienced by Youth with Disabilities JANUARY 2 003. Catherine Frazee teaches at the School of Disability