Between Children's Rights and Disability Rights: Inclusion and Participation of Children and Youth with Disabilities PDF

18 Between Children’s Rights and Disability Rights: Inclusion and...

18 Between Children’s Rights and Disability Rights: Inclusion and Participation of Children and Youth with Disabilities Cornelia Schneider LEARNING OBJECTIVES To learn about the rights of children with disabilities To reflect on the issue of protection rights versus participation rights To recognize the agency of children with disabilities To assess how to improve the recognition of the rights of children with disabilities If you want support me, you can learn about all the things I like and don’t like, like toilets and hand driers. You can be quiet and cuddly. You must listen to me and get down to my level if you want to talk to me. Don’t talk for too long and sometimes you might need to explain things to me a bit more. You need to tell me what is go- ing to happen and prepare me for new things, showing me a picture can help. And don’t forget my biscuit at bedtime! So, to remind you of the things that are important to me and for me: My mum, my dad and my sister My friends and people at school Copyright © 2018. Canadian Scholars. All rights reserved. That you know about things that I like and don’t like That you are calm, quiet and kind to me That you listen to me That you help me to do the things I enjoy. (Stevie, 5 years old, in Tyrie, Tyrie, Tyrie, & Tyrie, 2013, p. 7) The Sociology of Childhood and Youth in Canada, edited by Xiaobei Chen, et al., Canadian Scholars, 2018. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/concordiaab-ebooks/detail.action?docID=6282142. Created from concordiaab-ebooks on 2024-09-03 15:54:51.  Chapter 18 Between Children’s Rights and Disability Rights 361 INTRODUCTION Stevie, a five-year-old girl with cerebral palsy tells us in no uncertain terms about the people and objects in her life that matter to her and that she needs. Her words are a story of belonging and participating, and the things that she needs her allies to recognize. Reading those simple words, one can see how Stevie claims human rights that have been so long disrespected for children and youth with disabilities. With this, she positions herself as a social actor claiming participation in the decisions that are made around her. The Universal Declaration of Human Rights was adopted by the United Nations in Paris at the Palais Chaillot on December 10, 1948. As a consequence of the atrocities of war and the German Nazi regime, the United Nations had set it as their goal to give more pro- tection to humanity, especially to oppressed minority groups, by expressing the entitlement to human rights for any human being. Almost 70 years have passed since the Universal Declaration of Human Rights was adopted, and over the course of those years, there have been additional declarations with the goal to guarantee the rights of more specific groups suffering from oppression and human rights violations across the world. Examples of these include the Convention on the Prevention and Punishment of the Crime of Genocide (1948), the Convention on the Elimination of All Forms of Discrimination against Women (1979), and the Declaration on the Rights of Indigenous Peoples (2007). In 2006, the UN Convention on the Rights of Persons with Disabilities was ad- opted by the UN General Assembly in New York, and was lauded as another step in furthering the recognition of the rights of people with disabilities. The convention was written, with the support of many international disability rights groups, to include the goal of giving the right and opportunities for full participation in society. Children with disabilities are obviously included in the declaration; however, their specific rights as children were already mentioned in the earlier UN Convention on the Rights of the Child in 1990. The rights set out in these two documents, elaborated in an international context connected with the United Nations organization, find their resonance in nation- al politics, policies, and charters. Canada has recognized and ratified those texts, and given itself the obligation of recognizing and implementing these rights. However, the Canadian Coalition for the Rights of Children (n.d., pp. 1–2), in a working paper citing the Participation and Activity Limitation Survey of 2006, enu- Copyright © 2018. Canadian Scholars. All rights reserved. merates a number of issues in Canada when it comes to children with disabilities, which demonstrates that the rights of children with disabilities are clearly undermined, espe- cially in terms of finances and the provision of services: Children with disabilities are twice as likely as other children to live in house- holds that rely on social assistance as a main source of income. Nearly one in five (19.1 percent of) children with disabilities live in house- holds that fall below the Low Income Cut-Off, compared to 13.4 percent of children without disabilities. The Sociology of Childhood and Youth in Canada, edited by Xiaobei Chen, et al., Canadian Scholars, 2018. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/concordiaab-ebooks/detail.action?docID=6282142. Created from concordiaab-ebooks on 2024-09-03 15:54:51.  362 SECTION IV CITIZENSHIP, RIGHTS, AND SOCIAL ENGAGEMENT Children with disabilities are overrepresented in provincial/territorial child welfare systems. Children with disabilities are two or more times as vulnerable to violence and abuse. Almost 55 percent of children with disabilities who need aids and devices do not have access to them. Cost is cited as the most common reason for unmet needs. 40 percent of children with disabilities experience daily difficulties in partici- pating in everyday life. Of the many parents who report needing additional help, nearly three- quarters (73.5 percent) cite cost as the barrier. Over one-third of parents report having out-of-pocket costs for getting the assistance they need. 21.5 percent of families report that child care services or programs had re- fused to provide care for their child. Due to their child’s disability, parents report the following: Having to work fewer hours (38.4 percent) or change their work hours (36.5 percent) Having not taken a job (26.4 percent) Having to quit work (21.6 percent) Turning down a promotion (19.7 percent) Mothers are most commonly the main person to be impacted (64.1 percent) The question of children’s rights, and more specifically the rights of children with disabilities, has been addressed at this point mainly by activist or political organizations in Canada, such as the Canadian Coalition for Children’s Rights or UNICEF. There are a few Canadian researchers that have been addressing these issues in their work, such as Owen et al. (2008) and, with a focus on “psychiatrised children,” Brenda LeFrançois (2007; LeFrançois & Coppock, 2014). Relevant research has also been carried out by the Cape Breton Children’s Rights Centre, led by Dr. Katherine Covell and Dr. Brian Howe, whose goals are to monitor the general implementation of the CRC and to ed- ucate the broader public about these issues.1 In this chapter, I will rely on some of this Copyright © 2018. Canadian Scholars. All rights reserved. research and my own international research to construct my argument for supporting the recognition and implementation of the rights of children with disabilities. This chapter is organized into several parts: first, I will address the rights of children with disabilities at the intersection of the different UN human rights conventions, and examine possible contradictions between them stemming from the use of different mod- els of disability. I will then illustrate the complex issues arising when implementing the rights perspective, using examples from my own research with children and youth with disabilities. Finally, I will examine how a relationship perspective on rights can solve the issue of competing rights occurring in these conventions, also considering what teachers The Sociology of Childhood and Youth in Canada, edited by Xiaobei Chen, et al., Canadian Scholars, 2018. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/concordiaab-ebooks/detail.action?docID=6282142. Created from concordiaab-ebooks on 2024-09-03 15:54:51.  Chapter 18 Between Children’s Rights and Disability Rights 363 and other stakeholders need to know about the recognition and implementation of the rights of children and youth with disabilities in schools and in the workplace, especially in a Canadian context. BETWEEN THE CONVENTION ON THE RIGHTS OF THE CHILD AND THE CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES When it comes to the human rights of children with disabilities, there are three main conventions that cover the field: the Universal Declaration of Human Rights of 1948 (UDHR), the Convention on the Rights of the Child of 1990 (CRC), and, as the latest document adopted in 2006, the Convention on the Rights of Persons with Disabilities (CRPD). Obviously, the time span between these documents is enormous, which means that one needs to consider the context of each declaration and when it was drafted and subsequently adopted. The UDHR came on the heels of the surrender of the Nazi regime in Germany, and was also a reaction to the discovery of concentration camps, forced labour, medical experimentation, and genocide of Jewish people and many other groups of people who did not fit into the fascist parameters, such as people with nonhet- erosexual orientations, travelling people, people with differing political beliefs, as well as people with disabilities. As a consequence, the United Nations adopted this document in the spirit of pro- tecting future generations from anything like this ever happening again. It recognizes a breadth of rights for any human being, and thus recognizes all those rights for people with disabilities. The CRPD and the UDHR call for similar rights for “all persons with disabilities” (CRPD) and “for all peoples and all nations” (UDHR). These documents provide the right to family, work, rest and leisure, a standard of living, education and partic- ipation in the community for all family members. (Muir & Goldblatt, 2011, p. 631) In a similar spirit, in the late 1980s, the Convention on the Rights of the Child Copyright © 2018. Canadian Scholars. All rights reserved. (CRC) stood for a major shift in the perception of children. Historically, children have not been recognized as full members of society; they have been seen as “adults to become,” “immature,” or “incompetent” (see e.g. Corsaro, 2014; James & Prout, 2002). According to Howe and Covell (2010), children were generally seen as being the prop- erty of and/or being under the tutelage of their parents. One of the major advances of the CRC is that it positions the child as a subject and as an actor instead. (For more on the CRC, see chapter 17 by Noah Kenneally, in this collection.) In a more specific way, the CRC mentions the rights of children with disabilities, but under a focus on care (Covell & Howe, 2001): The Sociology of Childhood and Youth in Canada, edited by Xiaobei Chen, et al., Canadian Scholars, 2018. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/concordiaab-ebooks/detail.action?docID=6282142. Created from concordiaab-ebooks on 2024-09-03 15:54:51.  364 SECTION IV CITIZENSHIP, RIGHTS, AND SOCIAL ENGAGEMENT The Convention on the Rights of the Child 1989 (CRC) does refer to “mentally and physically disabled” children in Article 23. This Article sets out a range of obligations designed to ensure that children with disability receive “special care” in relation to their “special needs” with a view to them “achieving the fullest possible social integration and individual development.” (Kayess & French, 2008, p. 12) The focus on special care and special needs for children with disabilities endorses a particular perspective on disabilities, as I will elaborate on in the following section. BETWEEN THE SOCIAL AND THE MEDICAL MODELS OF DISABILITY The rights addressed both in the CRC and the CRPD each cover three types of rights. For the CRC, they are named the 3Ps: provision, protection, and participation (see Covell & Howe, 2001); the CRPD is similarly organized into rights of protection, of special services, and of full participation. However, even though it appears that the conventions are providing similar sets of rights to children and to people with disabil- ities, there are differences that need to be observed, which could ultimately lead to a “competing set of rights.” The CRC clearly addresses the rights of children with disabilities under a protective lens, with an emphasis on “special needs,” which highlights the CRC’s orientation to- wards the medical model of disability. The medical model of disability (see also Barnes & Mercer 2010; Davis, Watson, & Cunningham-Burley, 2008; Shakespeare, 2013) con- siders an individual’s disability as an issue stemming from the person’s condition that needs to be treated or fixed with specialized care. It also means that the disability lies uniquely within the individual, and not in the environment. While the CRPD has not abandoned the medical model completely, it has moved closer towards the social model of disability, which analyzes a person’s environment and situates the issue of disability within the restricted accessibility and barriers to full participation of society (see Barnes & Mercer, 2010). This model asks for reducing/abolishing disabling barriers to partic- ipation in society and in the person’s environment, as opposed to the medical model, Copyright © 2018. Canadian Scholars. All rights reserved. which only situates disability within the individual. As Mckenzie and Macleod (2012) point out, the CRPD contains “three disparate discourses relating to rights—namely, rights to full participation, rights to special services and rights to protection—draw[n] off different supposedly oppositional models of disability—namely, the social, medical and protective models” (p. 16). The protective model assumes the person with a disability to be inherently vulnerable and in need of protection from potential harm. Working with two models, the medical and the social (I contend that the protective and medical models are very similar, as they have an assumption of an impairment, a weakness, or a vulnerability inherent to the person with disability at the core), when it The Sociology of Childhood and Youth in Canada, edited by Xiaobei Chen, et al., Canadian Scholars, 2018. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/concordiaab-ebooks/detail.action?docID=6282142. Created from concordiaab-ebooks on 2024-09-03 15:54:51.  Chapter 18 Between Children’s Rights and Disability Rights 365 comes to the rights of people with disabilities, means that situations might arise where those rights are competing, as the two models pursue fundamentally different goals. The medical model is much more interested in “fixing” the person with disabilities, and is aimed directly at the person’s condition, while the social model’s goal is social change for the living conditions of the person with disabilities. Ideally, those rights should be complementary; however, they can become competing, especially if the idea of provid- ing services collides with the idea of participation. For example, the question of where a child with disabilities receives their education can be in contradiction with the right to special services, as the special services might not be available in a mainstream set- ting. We will see a bit further in this chapter how this contradiction can play out to the detriment of a child or youth when it comes to the right to participation in research, in general education, and in the transition into the workplace. RECOGNIZING THE PARTICIPATION RIGHTS OF CHILDREN WITH DISABILITIES Despite the fact that the CRC has been in place for almost three decades, the recog- nition of children’s rights is not achieved, as reports from many countries in both the Global North and South show. On an even bigger scale, the recognition of the rights of children with disabilities lags severely behind (e.g. UNICEF, 2009; Canadian Coalition for the Rights of Children, n.d.). More than other children, those with disabilities are seen as “incompetent.” As Davis, Watson, and Cunningham-Burley (2008) note, medi- cal and psychological notions of disability can “pathologize children who do not achieve universally standardized developmental targets, seeing the disability as a consequence of impairment. [There is] little awareness of the possibility that disability and a lack of ability to meet targets associated with developmental stages may have social and cultural roots” (p. 222). It is also crucial to address the power differential between children with disabilities and the adults surrounding them (e.g. teachers, caretakers, psychologists). Davis and Watson (2000) critique the misrecognition of children’s rights, especially when it comes to school settings, which might “allow children’s opinions to be over- looked on the grounds of ‘safety’ (when it is thought that inclusion in decision making Copyright © 2018. Canadian Scholars. All rights reserved. processes could harm the child) or ‘competency’ (when the child is not thought capable of understanding the process)” (p. 212). Davis and Watson (2000) have been examining how “adults actually judge competency in everyday settings” (p. 212). Their findings show that adults are at risk of having their judgment clouded with their personal and professional perspectives. One might hear in a current discussion this kind of argument: “Yes, I am respecting the rights of children with disabilities, but.…” In what follows, I draw on my own research over the past decade to illustrate how research can help unearth moments when rights and participation of children and youth with disabilities have not been respected, as well as to demonstrate the The Sociology of Childhood and Youth in Canada, edited by Xiaobei Chen, et al., Canadian Scholars, 2018. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/concordiaab-ebooks/detail.action?docID=6282142. Created from concordiaab-ebooks on 2024-09-03 15:54:51.  366 SECTION IV CITIZENSHIP, RIGHTS, AND SOCIAL ENGAGEMENT often dismissed competency of children and youth with disabilities. I use examples drawn from data from a comparative research study on peer relationships in inclusive classrooms (grades 1 to 5) in France and Germany (Schneider, 2007, 2009, 2011); an ethnographic study of youth aged 17 to 25 transitioning into the workplace in a Canadian program (Schneider, 2010); and a mixed-methods (surveys, focus groups, and interviews) study of the alumni of this program, with youth between the ages of 19 and 30 (Schneider, 2015). As Davis and Watson (2000) underscore, my examples support the position that participation is not about an entirely autonomous child, but rather about “the need for co-operation between adult and child” (p. 226). Children’s agency does not exist in a vacuum, but instead is lived in the interactions and relationships that they have with the people around them (see e.g. Corsaro’s Orb Web Model, which shows how children’s agency is embedded in a web of relationships with their environment; Corsaro, 2014). There are many things that adults and adult experts can learn from these kinds of examples and by challenging their own assumptions about the com- petency of children and youth with disabilities. Participation, as shown in both UN conventions, is a basic human right; however, participation rights are the most chal- lenging to implement. In the following, I will demonstrate this by using examples of children’s participation in research, participation in education, and participation in the labour market. Research: Between Participation Rights and Protective Rights The first obstacle that can be encountered when it comes to doing research on this topic is the requirements set up by research ethics bodies—for example, in Canada, the 2010 Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS 2). Children and people with disabilities are part of a group that traditionally has been considered to be vulnerable. Even if the language around vulnerability has been slightly modified, and those groups are now labelled as “requiring special care,” the obstacles to participating in research remain at times problematic. The TCPS 2 states a rather re- stricted view on research with children, making research with adults the “default option” over children’s participation: “Participation of children in research is justifiable when the Copyright © 2018. Canadian Scholars. All rights reserved. research objective cannot be achieved with adult participants only” (Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, & Social Sciences and Humanities Research Council of Canada, 2010, art. 4.4). It does not acknowledge automatically the value of doing research with children and youth (with disabilities) in their own right. Furthermore, the TCPS 2 systematically requires the consent of an authorized third party for a young person with intellectual disabilities to participate in a research project. Initially conceived to protect vulnerable populations from exploitation through research projects, now such rules can occasionally also impede a person’s participation in a project. The Sociology of Childhood and Youth in Canada, edited by Xiaobei Chen, et al., Canadian Scholars, 2018. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/concordiaab-ebooks/detail.action?docID=6282142. Created from concordiaab-ebooks on 2024-09-03 15:54:51.  Chapter 18 Between Children’s Rights and Disability Rights 367 In one of my projects, a Canadian youth with a disability, who was over the age of 18 and under the tutelage of his mother, wanted to participate in one of my research projects, but did not receive the consent of his mother. He resented her decision and was disappointed to not be able to participate in the study. As we were required to have both parental consent and assent from the actual participant, we could not allow him to par- ticipate in the study. This example demonstrates the issue of competing rights between the rights of the family and the rights of the young adult with disabilities, who was very excited to have an opportunity to participate in a study. In the spirit of Howe’s argument (2001), parental rights trumped the rights of the youth with disabilities. We must ques- tion whether research ethics boards or the Tri-Council Policy Statement on Research Ethics are giving too much decision-making power to families/caretakers, at the expense of possible child/youth participants. Skelton (2008) points out the following: It leaves children locked within the authority of parents/guardians and unable to make a decision for themselves about their own involvement in research which specifically pertains to an aspect of their own lived experience. What if the child really wants to participate but the parent says no? Legally, we would probably have to side with the parental decision but ethically we would probably want to go with the child’s choice. (p. 27) Furthermore, Skelton (2008) also stresses that articles 12 and 13 of the CRC en- shrine the child’s freedom of expression, and therefore contradict the priority of paren- tal consent over the child’s consent. She calls for an adequate integration of the CRC framework into the research ethics frameworks. Additionally, the CRPD should equally be included into those debates. Education: Between Participation Rights and Special Provision Rights Howe and Covell (2010) stress that, in the CRC, there has been a lot of emphasis put on rights related to education: Education is of special importance in the Convention.… Children’s education Copyright © 2018. Canadian Scholars. All rights reserved. rights can be divided along three tracks. First, children have the right to education. Under article 28, children have the right to free primary education and to acces- sible secondary and higher education. Under article 23, children with disabilities have the right to special assistance and care in education as well as in other areas. Second, children have rights in education. Under article 2, they have the right to nondiscrimination. Under article 12, they have the right to participate in educa- tional decisions that affect them. And under articles 13, 14 and 15, they have the rights to freedom of expression, freedom of thought and religion, and freedom of association and peaceful assembly, subject to reasonable limits. (p. 93) The Sociology of Childhood and Youth in Canada, edited by Xiaobei Chen, et al., Canadian Scholars, 2018. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/concordiaab-ebooks/detail.action?docID=6282142. Created from concordiaab-ebooks on 2024-09-03 15:54:51.  368 SECTION IV CITIZENSHIP, RIGHTS, AND SOCIAL ENGAGEMENT Similarly, article 24 in the CRPD recognizes the right to access full inclusive edu- cation at all levels of education. Equally, both conventions are highlighting participation rights, especially for young people to partake in decisions concerning their own lives. As Kayess and French (2008) point out, this is one of the points where the rights of the family can collide with the rights of the child with a disability, and the question remains largely Box 18.1: What School to Go To? The question of which school a child should go to can be a crucial one, especial- ly when the child is in a system that allows for options between specialized and mainstream (inclusive) schooling. In my studies, I interviewed children who were not consulted when the choice needed to be made about which secondary school to attend. One example is Prisca (Schneider 2007, 2009), a girl with a learning dis- ability who had been attending inclusive school in Germany, but had been oriented towards a special secondary school for the following year. She wished to remain in class with the rest of her classmates from elementary school, but teachers told her it would not be possible. She was not happy about this, as she expressed in her interview. One of her friends also told me that they were trying to find a strategy to make it possible for Prisca to go to Main School with her friends: Verena will go to Main School and Prisca … how do they call it? Special school. But I thought that it would have been better if she waited another year, in order to go to Main School, too. That would have been better. (Annemarie) Annemarie knows that Prisca was unhappy about this decision and she tried to comfort her in her grief: She said, I think this is totally unfair, and so I said, Prisca, maybe your mother can tell Mrs. F that you should wait for one more year so that you can be able to go to Main School. (Annemarie) In the end, nothing changed, and Prisca, after having been learning successful- ly in an inclusive setting, had to leave and attend a special school instead. Parents and experts decided on her behalf what was in “her best interest.” It is important to Copyright © 2018. Canadian Scholars. All rights reserved. also note here the larger implications of children’s participation in the decision-mak- ing process. The reason for sending her to a special school was that the mainstream school would not be able to accommodate her needs, indicating that her right to attend an inclusive school is undermined by the current lack of pedagogical acces- sibility in Germany. Instead of improving accessibility, Prisca was excluded from the mainstream school, and as such was not able to exercise her rights. This also shows the political implication of children’s voices, and the possibility of social change if their agency and decision-making abilities are taken seriously. The Sociology of Childhood and Youth in Canada, edited by Xiaobei Chen, et al., Canadian Scholars, 2018. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/concordiaab-ebooks/detail.action?docID=6282142. Created from concordiaab-ebooks on 2024-09-03 15:54:51.  Chapter 18 Between Children’s Rights and Disability Rights 369 unsolved as to whom to give priority in this debate if there is a disagreement. Assumptions of vulnerability and incapacity often trump the recognition of the abilities of the child to participate in decision-making processes concerning their life. Often, families are follow- ing the advice of adult experts who might have misrecognized the capacities of the child. Howe (2001) has elaborated that parents have the right and the duty to interpret what their children’s best interest is, and that they have “fundamental rights” as parents, but this does not mean that they have absolute rights. The following two examples of Prisca and Sébastien will show how children’s agency concerning access to and choice in education gets easily dismissed or overlooked at the benefit of parents/families or other adult experts. Another example of implementing participation rights is the importance of consult- ing children when it comes to the use of assistive devices or technology in the classroom. In one of the French elementary school classes I did a research project in (Schneider, 2007, 2009), I did several interviews with Sébastien, a little boy who, according to the teachers, needed a laptop in class to support his writing. Over the time that I spent in the classroom, I found out that Sébastien felt stigmatized by the laptop and had not been consulted about whether he wanted to use it or not. At that time, he was the only child in the classroom using a laptop, which he felt set him apart from his peers. Thus, he developed strategies to memorize the things the teacher said, so that he did not need to use the laptop as much. Sébastien should have been more involved in the decision about how to use assistive technology in the classroom, as he was clearly not comfortable with the way this was handled. He felt it exposed him in the classroom in a way he deemed to be negative. Recognizing his participation rights in this case would have meant lis- tening to his concerns about the implementation of the assistive technology, and how he experienced stigma when using it. Including his viewpoints on the matter, the classroom teacher might have found other ways to use this piece of equipment in the classroom that would not have made him feel stigmatized and singled out. Transition to Work: Impeding Participation Rights of Youth with Disabilities A further example of how participation rights of youth disabilities can be impeded stems from two studies with youth with disabilities transitioning to work in Canada. From the Copyright © 2018. Canadian Scholars. All rights reserved. observations of research participants who were part of my project studying transitions into adulthood for people with disabilities, one could observe the immense vulnerabil- ity that persons with disabilities can be placed in when it comes to the workplace. For example, George shared his experience with the research team about how he lost his employment at the fast food restaurant where he had been working, once the supervisor had changed (Schneider, Chahine, & Hattie, 2014). Investigator: Yeah, you liked that. What about, and the supervisor you had before the one that came in and didn’t like you, what was that person like? The Sociology of Childhood and Youth in Canada, edited by Xiaobei Chen, et al., Canadian Scholars, 2018. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/concordiaab-ebooks/detail.action?docID=6282142. Created from concordiaab-ebooks on 2024-09-03 15:54:51.  370 SECTION IV CITIZENSHIP, RIGHTS, AND SOCIAL ENGAGEMENT George: Kind of cranky at me, they weren’t giving me any hours, cut back my hours. Investigator: Oh, even the one before— George: No, the one that came in that didn’t like me. The one before that was super nice, she knew how people with disabilities are like and wanted to give me a chance. Other participants found themselves with reduced work hours when their super- visors changed, too. We know that underemployment of people with disabilities is a worldwide issue, and the labour rights protection of workers with disabilities who are employed is not very strong. Unions are often not involved in precarious workplaces such as the fast food industry. There is a lack of oversight to enforce the rights of people with disabilities in labour market participation and protection of workers’ rights. In our stud- ies, if participants experienced continued protection in their workplace, it was because of their own very active and protective parents who intervened when necessary. It also needs to be pointed out that those parents had a higher socioeconomic background and higher educational levels than parents of our other participants (see also Trainor, 2008, 2010). The fact that the parents of young people with disabilities are still the ones nego- tiating these young people’s experiences at work is an example of how they are further denied their rights to a full and equal voice. RIGHTS OF CHILDREN WITH DISABILITIES? “YES! BUT …” The examples in this chapter demonstrate that the advancement of the rights of children and youth with disabilities remains a complex issue. Children and youth with disabilities continue to experience discrimination and misrecognition of their rights, even if now as- cribed in the different UN conventions. As I have shown above, the competing models of disability are contributing to those issues. As long as disability is primarily viewed as a medical or developmental phenomenon, societies will continue to discount the viewpoints of children and youth with disabilities as “immature” or “incompetent.” We can clearly see that disability continues to be perceived as a medical issue that excludes children and youth with disabilities from being taken seriously or being allowed more participation in making decisions involving their lives. This is the case for several of the children that I had Copyright © 2018. Canadian Scholars. All rights reserved. the privilege to interview during my different research projects. Once they felt they were taken seriously, they opened up and spoke about their personal strategies of navigating the system, even though or because their voices were not taken into account. The sociology of childhood and the field of childhood studies have helped to rec- ognize children’s agency and their rights. Pioneers Prout and James (1997) have called for a double engagement for researchers: to have children contribute to research, as well as to be supporters to children’s causes. They explained that “to proclaim a new paradigm of childhood sociology is also to engage in and respond to the process of reconstructing childhood in society” (Prout & James, 1997, p. 8). Research with children with disabilities The Sociology of Childhood and Youth in Canada, edited by Xiaobei Chen, et al., Canadian Scholars, 2018. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/concordiaab-ebooks/detail.action?docID=6282142. Created from concordiaab-ebooks on 2024-09-03 15:54:51.  Chapter 18 Between Children’s Rights and Disability Rights 371 gives a testimony to children’s agency, their perceptions of the world, and their strategies to deal with the nonrecognition of their agency and rights by adults and adult experts (see also Davis et al., 2008). But even under the different models of disability, we can see that the rights to education and to work, and also to participate in research, are still being un- dermined—by, for example, a lack of labour rights and/or a lack of enforcement and imple- mentation of those rights—ultimately impacting negatively on the right to labour market participation. This is the case in Canada, but even more so in other places in the world, for example the Global South, where the right to education and work suffers in addition from a lack of financial means (e.g. Miles & Singal, 2010; UN, 2015). The implementation and enforcement of those rights needs financial and structural support. If children’s rights to education are generally not implemented in those countries due to a lack of schools and teachers, it becomes obvious that children who are learning and accessing knowledge in less traditional ways are at a high risk of falling through the cracks. I argue that our current approach to the rights of children and youth with disabili- ties is best described as the “Yes! But …” attitude. In principle, we are willing to recog- nize the rights, but are quick to dodge those rights if economics tell us that there is no funding to support those rights, or if our personal and professional biases about persons with disabilities get in the way. Similarly, when rights seem to be competing between what we see as provision or protection and participation, we are quick to decide on the side of protection, thereby impeding the children’s rights to participation. Nedelsky (2008, p. 141) offers another way of thinking about the issue of competing rights, by addressing them under the imperative of relationships. We need to examine the competing interpretations of those rights and determine the underlying values we wish to achieve (e.g. increased participation of the child with a disability). Once we determine which values are at stake, we can work on establishing relationships with the child and their environment to foster them. Nedelsky’s approach shows the importance of the contribution of research involving children and youth with disabilities to help resolve some of those contradictions elaborated on in this chapter: it builds on relation- ships to uncover the agency of those children and to help facilitate their participation in decision-making processes, as well as to challenge conventional ways of assessing children’s agency (Davis et al., 2008). Researchers, professionals in the field, and fami- lies need to challenge themselves to build relationships that reach beyond preconceived Copyright © 2018. Canadian Scholars. All rights reserved. medical notions of disability, vulnerability, incompetence, and helplessness, and fulfill the disabled person’s desire for and right to recognition. Honneth’s work “The Struggle for Recognition” (1995) highlights the importance of different levels of recognition. Honneth demonstrates that recognition arises from these different levels: love/personal relationships, rights, and solidarity. According to Honneth, the recognition of rights is a central element. However, it needs to be fostered on the level of personal relationships as well as on the level of overall societal solidarity in order to achieve full recognition of an oppressed social group (see also Kenneally, chapter 17). We cannot give recognition to children and youth with disabilities if we neither engage on The Sociology of Childhood and Youth in Canada, edited by Xiaobei Chen, et al., Canadian Scholars, 2018. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/concordiaab-ebooks/detail.action?docID=6282142. Created from concordiaab-ebooks on 2024-09-03 15:54:51.  372 SECTION IV CITIZENSHIP, RIGHTS, AND SOCIAL ENGAGEMENT a personal level with them, nor express general solidarity at a higher societal level. If we embed these levels into our actions, we can establish relationships that help us to improve the participation and inclusion of our fellow citizens regardless of their age and abilities. We can better recognize children’s and youth’s ability to participate if we know them well, and if we are open to listening to their viewpoints and experiences, and are ready to in- clude them in our cultures, policies, and practices. Our response to the recognition of the rights of children and youth with disabilities needs to evolve from paying lip service to co- constructing with children with disabilities rights-respecting contexts and environments. IMPLEMENTING THE RIGHTS OF CHILDREN WITH DISABILITIES IN SCHOOLS AND IN THE WORKPLACE Evidently, many issues concerning the rights of children with disabilities stem from the general societal lack of recognition due to misconceptions and stereotypical as- sumptions about persons with disabilities, often based on a very medicalized and deficiency-based perspective on disabilities. In addition, children’s rights in general have not been implemented in a satisfactory way, especially when it comes to educa- tion and schooling. Given that typically children spend about 12 years in schools and classrooms, it is natural to think of this place as one of the major locations to imple- ment and teach children’s rights in general, and the rights of children with disabili- ties specifically. Canadian research has shown very positive outcomes when schools consciously become rights-respecting schools (Covell & Howe, 2008). Children’s participation in their own learning and learning environment has proven to increase tremendously when a rights-based curriculum is implemented. This shows that such improvements are a positive starting point that could then be expanded on to include the more specific rights of children with disabilities. One of the key components is education, of both the children and youth with dis- abilities and the adult stakeholders. As often occurs, the knowledge around children’s rights or disability rights is quite limited, and fraught with assumptions; for example, adult stakeholders might dismiss children’s rights or disability rights because they might oppose their own agenda. Rights education can help provide educators, families, or Copyright © 2018. Canadian Scholars. All rights reserved. employers with a more nuanced picture about children’s rights and disability rights, as well as help implement them in their everyday work in schools and in the workplace. Firstly, educators and employers need to know the relevant human rights conventions in detail and fully understand what they imply for their work in schools and the work- place. Secondly, it is essential to create greater awareness and knowledge of the agency of children and youth with disabilities. Research outcomes from the field of sociology of childhood, childhood studies, and disability studies can make an enormous contribution to teacher education and professional development. As I have shown in this chapter, listening to and building relationships with children and youth with disabilities, and The Sociology of Childhood and Youth in Canada, edited by Xiaobei Chen, et al., Canadian Scholars, 2018. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/concordiaab-ebooks/detail.action?docID=6282142. Created from concordiaab-ebooks on 2024-09-03 15:54:51.  Chapter 18 Between Children’s Rights and Disability Rights 373 finding ways to include their opinions, experiences, and expertise on their own lives are central to respecting the rights of children and youth with disabilities. Only when we have done this can we grow towards becoming a society where participation of all its members is considered to be truly inclusive. CHAPTER SUMMARY Together, in this chapter, we Learned about the necessity of recognizing the rights of children and youth with disabilities. Sought to understand the different models of disability and how they affect the perspectives on the rights of children and youth with disabilities. Reviewed examples of children and youth whose rights have not been respected. Reviewed the importance of relationship-building when it comes to imple- menting the rights of children with disabilities. Recognized the importance of rights education for teachers and employers to improve the situation of children and youth with disabilities. STUDY QUESTIONS 1. What are the different types of rights addressed in the CRC and the CRPD (as identi- fied in the chapter), and how can they come to contradict each other? 2. What does the social model of disability mean for the participation rights of children and youth with disabilities? 3. How could you personally support a child or youth with disabilities in improving ac- cess and participation? 4. Discuss ways of improving participation rights of children and youth with disabilities in schools or in the workplace. 5. Why is the recognition of the rights of children and youth with disabilities so important Copyright © 2018. Canadian Scholars. All rights reserved. to their education and participation in social life? SUGGESTED RESEARCH ASSIGNMENT Imagine you are a consultant hired by the government and you have to write a report with recommendations on improving the situation of children and youth with disabili- ties. Research the facts about the situation of children with disabilities, and elaborate on recommendations for action from your findings. The Sociology of Childhood and Youth in Canada, edited by Xiaobei Chen, et al., Canadian Scholars, 2018. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/concordiaab-ebooks/detail.action?docID=6282142. Created from concordiaab-ebooks on 2024-09-03 15:54:51.  374 SECTION IV CITIZENSHIP, RIGHTS, AND SOCIAL ENGAGEMENT SUGGESTED FILMS/VIDEO CLIPS On the Way to School www.youtube.com/watch?v=vZsEvLaua4w A documentary of children around the world on their way to school. One of them is a little boy in India, Samuel, who uses a wheelchair and who goes to school with the help of his two brothers. The video exemplifies the importance of access to education for children with disabilities. Me Too! Yo Tambien! www.youtube.com/watch?v=rDIlPQNrLU8 Spanish movie about a young man who is the first university graduate with Down syn- drome and his struggles to find recognition. Listen up! Children with Disabilities Speak Out www.youtube.com/watch?v=FjhF-pdlJ8M Clip by Plan International about the importance of respecting the rights of children and youth with disabilities around the globe. SUGGESTED WEBSITES UN Declaration on the Rights of Persons with Disabilities www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with- disabilities.html Provides an overview, the text of the declaration, and additional information. Promoting the Rights of Children with Disabilities www.un.org/esa/socdev/unyin/documents/children_disability_rights.pdf A resource provided by UNICEF Council of Canadians with Disabilities (CCD); addi- tional resources and information related to the general situation of people with disabil- ities in Canada available at www.ccdonline.ca/en/. Copyright © 2018. Canadian Scholars. All rights reserved. NOTE 1. See also their website: childrensrightseducation.com/cbu-childrens-rights-centre.html. The Sociology of Childhood and Youth in Canada, edited by Xiaobei Chen, et al., Canadian Scholars, 2018. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/concordiaab-ebooks/detail.action?docID=6282142. Created from concordiaab-ebooks on 2024-09-03 15:54:51.  Chapter 18 Between Children’s Rights and Disability Rights 375 REFERENCES Barnes, C., & Mercer, G. (2010). Exploring disability: A sociological Introduction (2nd ed.). Cambridge, UK: Polity Press. Canadian Coalition for the Rights of Children. (n.d.). Realizing the rights of children with disabilities in Canada. Working document. Retrieved from rightsofchildren.ca/resources/childrens-rights-monitoring/ Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, & Social Sciences and Humanities Research Council of Canada. (2010). Tri-Council policy statement: Ethical conduct of research involving humans. Retrieved from www.pre.ethics.gc.ca/pdf/eng/tcps2/TCPS_2_ FINAL_Web.pdf Corsaro, W. A. (2014). The sociology of childhood (4th ed.). Thousand Oaks, CA: Sage. Covell, K., & Howe, R. B. (2001). The challenge of children’s rights for Canada. Waterloo, ON: Wilfried Laurier University Press. Covell, K., & Howe, R. B. (2008). Rights, respect and responsibility: Final report on the County of Hampshire Rights Education Initiative September 2008. Retrieved from www.cbu.ca/sites/cbu.ca/files/ pdfs/crc-pub-rights-respect-responsibility-2008.pdf Davis, J., & Watson, N. (2000). Disabled children’s rights in everyday life: Problematising notions of com- petency and promoting self-empowerment. The International Journal of Children’s Rights, 8(3), 211–228. doi:0.1163/15718180020494622 Davis, J., Watson, N., & Cunningham-Burley, S. (2008). Disabled children, ethnography and unspoken understandings: The collaborative construction of diverse identities. In P. Christensen & A. James (Eds.), Research with children: perspectives and practices (pp. 220–238). Hoboken, NY: Taylor & Francis. Honneth, A. (1995). The struggle for recognition: The moral grammar of social conflicts. Cambridge, UK: Polity Press. Howe, R. B. (2001). Do parents have fundamental rights? Journal of Canadian Studies, 36(3), 61. Howe, R. B., & Covell, K. (2010). Miseducating children about their rights. Education, Citizenship and Social Justice, 5, 91–102. doi:10.1177/1746197910370724 James, A., & Prout, J. (Eds.). (2002). Constructing and reconstructing childhood: Contemporary issues in the sociological study of childhood. London: Routledge Falmer. Kayess, R., & French, P. (2008). Out of darkness into light? Introducing the Convention on the Rights of Persons with Disabilities. Human Rights Law Review, 8(1), 1–34. doi:10.1093/hrlr/ngm044 LeFrançois, B. A. (2007). Children’s participation rights: Voicing opinions in inpatient care. Child & Copyright © 2018. Canadian Scholars. All rights reserved. Adolescent Mental Health, 12(2), 94–97. doi:10.1111/j.1475-3588.2007.00439.x LeFrançois, B. A., & Coppock, V. (2014). Psychiatrised children and their rights: Starting the conversation. Children & Society, 28(3), 165–171. doi:10.1111/chso.12082 Mckenzie, J. A., & Macleod, C. I. (2012). Rights discourses in relation to education of people with intel- lectual disability: Towards an ethics of care that enables participation. Disability & Society, 27(1), 15–29. doi:10.1080/09687599.2012.631795 The Sociology of Childhood and Youth in Canada, edited by Xiaobei Chen, et al., Canadian Scholars, 2018. ProQuest Ebook Central, http://ebookcentral.proquest.com/lib/concordiaab-ebooks/detail.action?docID=6282142. Created from concordiaab-ebooks on 2024-09-03 15:54:51.  376 SECTION IV CITIZENSHIP, RIGHTS, AND SOCIAL ENGAGEMENT Miles, S., & Singal, N. (2010). The education for all and inclusive education debate: Conflict, contradiction or opportunity? International Journal of Inclusive Education, 14(1), 1–15. Muir, J., & Goldblatt, B. (2011). Complementing or conflicting human rights conventions? Realising an inclusive approach to families with a young person with a disability and challenging behaviour. Disability & Society, 26(5), 629–642. doi:10.1080/09687599.2011.589195 Nedelsky, J. (2008). Reconceiving rights and constitutionalism. Journal of Human Rights, 7(2), 139–173. doi:10.1080/14754830802071950 Owen, F., Tardif-Williams, C., Tarulli, D., McQueen-Fuentes, G., Feldman, M., Sales, C., … Griffiths, D. (2008). Human rights for children and youth with developmental disabilities. In D. Zinga & T. O’Neill (Eds.), Children’s rights: Multidisciplinary approaches to participation and protection (pp. 163–194). Toronto: University of Toronto Press. Prout, A., & James A. (1997). A new paradigm for the sociology of childhood? Provenance, promise and problems. In A. James & A. Prout (Eds.), Constructing and reconstructing childhood. Contemporary issues in the sociological study of childhood (pp. 7–33). London: RoutledgeFalmer. Schneider, C. (2007). Être intégré, être en marge, être reconnu? L’enfant en situation de handicap et son statut social dans une classe ordinaire. Education et Sociétés, 20(2), 149–166. Schneider, C. (2009). Equal is not enough—Current issues in inclusive education in the eyes of children. International Journal of Education, 1(1), E1. Retrieved from www.macrothink.org/journal/index.php/ije/ article/ view/101 Schneider, C. (2010). “Ready for work”: Feeling rules, emotion work and emotional labour for peo- ple with disabilities. Interactions, 4. Retrieved from www.ctnerhi.com.fr/images/revue_interactions/ schneider_en.pdf Schneider, C. (2011). Une étude comparative de l’éducation inclusive des enfants avec besoins particuliers en France et en Allemange: Recherches dans onze salles de classe [A comparative study of the inclusion of children with special needs in mainstream schools in France and Germany: Case studies of eleven classrooms]. Lewiston, NY: Edwin Mellen Press. Schneider, C. (2015). Social participation of children and youth with disabilities in Canada, France and Germany. 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