Special Edition: Giving A Voice To Children's Rights

By Keiko Shikako-Thomas, PhD, OT, Canada Research Chair in Childhood Disability: Participation and Knowledge Translation, McGill University and Meaghan Shevell, MA Human Rights, Participation and Knowledge Translation in Childhood Disabilities Lab, McGill University

Keiko Shikako-Thomas will meet with the CRPD Committee to increase their awareness of the issues that she elaborates on in her blog post.

"There is no trust more sacred than the one the world holds with children. There is no duty more important than ensuring that their rights are respected, that their welfare is protected, that their lives are free from fear and want and that they can grow up in peace." (Kofi Annan)

Every adult of today was a child first. But do children have a voice in matters that are important for them? Do children with disabilities and their families know they have rights? Does Canada respect their rights?

There is a reason why children have their own human rights treaty: the Convention on the Rights of the Child (CRC), and why they have a dedicated section in the Convention on the Rights of Persons with Disabilities (CRPD). The reason is that the issues that affect children are intersectional in nature: they cut across the boundaries of health, education, welfare, and employment (for their parents to provide the supports they need to grow up, and for themselves as they transition from educational to work settings). Children also make up a significant percentage of historically and systematically discriminated groups, such as Indigenous, women, people with disabilities, immigrants, refugees, and racial and ethnic minorities. However, despite this representation, children often fall through the cracks in services and provisions offered to these groups, as they are often designed exclusively by adults with adults’ needs in mind.

Children with disabilities experience similar challenges as adults in terms of inclusion, integration, participation, and accessing human rights, but they also experience added barriers, as they often do not have a voice in matters that affect them. Children with disabilities are not typically consulted in decision-making that affects them, or in determining what is in their best interest. Indeed, they are frequently not represented in advocacy, policy or service delivery.

Across Canadian provinces, families of children with disabilities face significant disparities in the types of services they are allowed to receive in terms of their health--what therapies are available early on to guarantee the best possible start in life, and later on as they transition from pediatric to adult care; education--what educational settings (the supports available in both integrated and segregated schools) are available to facilitate their learning; and in the community--what opportunities they have to play, to engage in physical activities, to participate in their communities and to build on their social and citizenship skills.1, 2   This intersectional discrimination is further complicated by regional discrepancies: across provinces and territories, on and off reserves, and in rural and urban areas.3

Canada has not collected data on children with disabilities since 2006.  Canada’s current data collection tool, the Canadian Survey on Disability, excludes children from birth to age 14.  Without this information, targeted programs cannot effectively be formulated to specifically address and improve the situation of children with disabilities in Canada.

Governments and societies must also address the challenges that family caregivers face. There is mounting evidence4  revealing that the burden of care overwhelmingly falls on family members (particularly women) rather than the state, which can result in their eventual disability. In support of Article 6, appropriate caregiver support must be provided to minimize the mental and physical effect on caregivers.  Given the opportunity cost (i.e. reduced hours of paid work) family caregivers experience, particular budgetary lines to consider could include respite care, intermittent leave to bring children to appointments, tax breaks and a caregiver income.

Based on existing research and listening to what children and families have to say, suggestions on measures that Canada could take to give children with disabilities a voice and enjoy their human rights on equal footing include:

  • Collect data concerning children with disabilities and their families so that policies, programs and services are evidence-based decisions, in order to best meet the needs of this population and their families.
  • Develop family-centered and child-centered services to support families accessing services and resources and give families autonomy to decide how they want to spend funds related to their child.
  • Increase its capacity to support services for children with disabilities on reserves and in rural communities.
  • Develop mechanisms to share success stories and positive models across provinces to reduce disparities in the provision of services, including transition to adult services, across the country.
  • Include the needs of children with disabilities in leisure, sports, parks and recreation, and community development that focus on participation in leisure.
  • Consider the differences in educational opportunities available across provinces and establish a benchmark for language equality and acquisition of Sign language with a view to ending language deprivation.
  • Foster self-advocacy initiatives for children and youth with disabilities to learn about their human rights, have access to positive role models, and learn necessary skills for full participation and citizenship.

1. Shikako-Thomas K, Shevell M, Lach L, Law M, Schmitz N, Poulin C, Majnemer A and the QUALA group. Are you doing what you want do? Leisure preferences of adolescents with cerebral palsy, Developmental Neurorehabilitation, 18: 234-240, (2015).
2. Dahan-Oliel, N., Shikako-Thomas, K., & Majnemer, A. (2012). Quality of life and leisure participation in children with neurodevelopmental disabilities: A thematic analysis of the literature. Quality of Life Research, 21(3), 427-439. Retrieved from http://www.jstor.org/stable/41445069.
3.The Jordan’s Principle Working Group (2015) Without denial, delay, or disruption:
Ensuring First Nations children’s access to equitable services through Jordan’s Principle. Ottawa, ON: Assembly of First Nations.
4. Ibid. (Raina, P., et al. (2004). Caregiving process and caregiver burden: conceptual models to guide research and practice. BMC pediatrics, 4(1).

Q & A with CRPD Shadow Report Committee Member Frank Folino

It is the Canadian Association of the Deaf-Association des Sourds du Canada (CAD-ASC)’s mission to promote and protect the rights, needs, and concerns of Deaf people who use American Sign Language (ASL) and langue des signes québécoise (LSQ). CAD-ASC is the oldest organization, founded in 1940, that provides consultation and information on Deaf issues to the public, business, media, educators, governments and others; conducts research and collects data of Deaf people in Canada.

CAD-ASC is affiliated with our international organization, World Federation of the Deaf (WFD), which is an international non-profit and non-governmental organization of Deaf associations from 133 countries. According to the WFD, it has a consultative status in the United Nations and is a founding member of the International Disability Alliance (IDA). WFD promotes the human rights of deaf people in accordance with the principles and objectives of the United Nations Charter, Universal Declaration of Human Rights, UN Convention on the Rights of Persons with Disabilities (CRPD), 2030 Agenda and Sustainable Development Goals (SDGs), and other Human Rights Treaties. WFD’s legal seat is in Helsinki, Finland where the WFD Secretariat operates.

Frank Folino has been the President of the Canadian Association of the Deaf-Association des Sourds du Canada (CAD-ASC) since 2013. Under his leadership, CAD-ASC has seen an increase of the visibility of the President’s involvement in promoting and defending human rights issues for Deaf people in Canada. He currently serves on numerous advisory groups that increase awareness of the Sign language rights and accessibility rights of Deaf people, including Council of Canadians with Disabilities, Association Visual Language Interpreters of Canada. He represents Canada on international stage, working with the United Nations, North America’s Advisory Committee at World Association of Sign Language Interpreters, World Federation of the Deaf, and others.

CAD-ASC uses hashtags to promote the dialogue towards our Deaf community in Canada: #ASLandLSQCanada #LSQetASLCanada #CRPD2017 and #CDPH2017.

Frank will meet with the CRPD Committee to increase awareness of the issues that he elaborates on in this Q & A.

1. Describe your work with the CRPD Shadow Report Committee.

CAD-ASC has led the area on focusing the Sign language rights for Deaf people in the Shadow Report. We have submitted information for the Shadow Report that focus on issues pertaining to Deaf people in Canada. We also illustrate our lived experiences as Deaf people through our specific cultural and linguistic identity with our national Sign languages, where we are faced with language and communications barriers in areas of health services, interpreting services, education, employment, broadcasting and telecommunications, access to information, political participation, the justice system, culture, sports, and others.

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) also sets a framework for Deaf people’s rights, filling an important gap in international human rights legislation. The articles of the Convention that relate directly to Sign languages are:

  • Article 2 – Definition
  • Article 9 – Accessibility
  • Article 21 – Freedom of expression and opinion, and access to information
  • Article 24 – Education
  • Article 30 – Participation in cultural life, recreation, leisure and sport

There are at least 40 countries around the world that granted a legal protection to recognize Sign languages as official languages. We want to see Canadian government grant legal recognition of our national Sign languages through legislation that is accessible, equitable and sustainable for Deaf people across Canada because it brings clear benefits in terms of improved access to information and services.

2. How do you hope your work in Geneva might positively affect the implementation of the CRPD in Canada?

CAD-ASC is excited to be present in Geneva because we are the only national not-for-profit organization with the focus on human rights issues for Deaf people on our national Sign languages and accessibility. We will be able to prove that Canada has not recognized our national Sign languages. Recognizing them protects the fundamental human rights of Deaf people.

We refer to the United Nations Convention on the Rights of Persons with Disabilities (CRPD) because it ensures the right to Sign language recognition in Article 21. Recognizing our national Sign languages as a language that constitutes, together with the definition of accessible communication, an important step towards the social inclusion and human rights of Deaf people.

3. What would be the most important concluding observation(s) that the committee could offer your particular organization?

We would like to see the Canadian government recognize our national Sign languages because it will allow the recognition, promotion, and protection of our human rights to Deaf people’s first languages in Canada: American Sign Language (ASL) and langue des signes québécoise (LSQ). The recognition of ASL and LSQ will value the linguistic identity of the Deaf community as we integrate into both English and French societies.
We also expect to see an outcome of bilingual education that is the key to linguistic and cultural identity that provides Deaf children with the opportunities to achieve full citizenship, education and employment. This in turn will facilitate social and cognitive development with ASL and LSQ proficiency at an early age and also will lead to high levels of English/French literacy. Deaf children are entitled to an opportunity for success in life, academically, socially, and emotionally, that language acquisition can provide.

The fundamental human rights of Deaf people to full citizenship will include quality of services and the promotion of accessibility for Deaf individuals. It allows them access health services, education, interpreting services, employment, access to information, broadcasting and telecommunications, political participation, the justice system, culture, sports and others. Sign language interpreters are essential to the Deaf community in Canada with their hard work to bridge the two communities of Deaf and hearing people. We expect that the Canadian government will influence policy in an inclusive approach and listen to the Deaf experts when they deliver advocacy and services during policy development.

4. What do you look forward to most as your work with the Committee continues?

We continue to focus on our work to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all Deaf persons through legal protection and equal opportunities in Canada with the recognition of our national Sign languages. This will be the turning point in advancing the human rights of Deaf people and give them full citizenship in the civil society.

5. How will you use the concluding observations in your work in the future?

We will continue our ongoing work to promote human rights of Deaf people with ongoing advocacy concerning the CRPD and 2030 Agenda and Sustainable Development Goals (SDGs), related to Deaf people in Canada through United Nations human rights conventions, which are a) International Covenant on Civil and Political Rights, b) International Convention on the Elimination of All Forms of Racial Discrimination, c) International Covenant on Economic, Social and Cultural Rights, d) Convention on the Elimination of All Forms of Discrimination against Women, and e) Convention on the Rights of the Child.