Key points
Aim
- Create awareness to fulfil the specific social, communication and linguistic rights of deaf people with intellectual disabilities (ID), as well as indicate measures supporting the full development of their potential and their social inclusion in a communicatively and linguistically accessible environment.
Target Group
- This position paper is intended to reach out to policymakers, professionals, organizations, and institutional structures, which practice, organise or use services dedicated to people with intellectual disabilities and to deaf people with intellectual disabilities, as well as their family members, members of deaf communities and researchers.
Background
One in five individuals who are deaf at birth is also affected by intellectual disabilities. Due to their additional disabilities, they may not be known to deaf communities. In the deaf subsample of the Metropolitan Atlanta Registry, a rate of 23% of intellectual disabilities and 10% of cerebral palsy was found among deaf people (Van Naarden Braun, 2015). Similar rates of co-occurrence (22%) of cognitive disabilities were reported by the Gallaudet Research Institute (2008).
Deaf people with intellectual disabilities are quite a diverse group of people with varying support needs. As such, they face great obstacles in participating in social environments that do not take into account their specific linguistic and communication needs. This specific group of the deaf population is significantly more vulnerable and at risk of being ‘unattended’, marginalised and excluded from society, including deaf communities, when their social, linguistic and communication needs remain unmet.
If opportunities for early and continued access to visual communication (primarily signed language) are not provided, deaf people with intellectual disabilities face the risk of being highly restricted in their communication and linguistic development and ability to communicate with others, hindering their capacities to develop fulfilling social relationships with others in their lives. In many cases, they are also not recognised or included within deaf communities, whether due to mobility restrictions or care requirements. Many live with relatives, most often hearing, or are placed in institutions where their fundamental rights to linguistically appropriate communication and support are not often met.
Ecological Systems Theory suggests that individuals do not develop in isolation, but rather their developmental trajectories are constantly shaped by dynamic interactions with family, school, community, and society-at-large (Bronfenbrenner, 1992). The limited contact and engagement of the deaf population with intellectual disabilities with people who are able to communicate in an accessible way, including members of deaf communities, has a negative impact on their inclusion in society, as well as impeding their ability to reach their full potential.
Social inclusion of deaf people with intellectual disabilities and the international legal framework
Social inclusion of deaf people with intellectual disabilities and their full personal development can be achieved only in a communicatively and linguistically accessible environment. In this sense, access to language for this population is both a basic need and a fundamental human right.
The Universal Declaration of Human Rights has established the right to freedom of expression as a fundamental human right. The relevant article of the Declaration is Article 19, which states that: “Everyone has the right to freedom of opinion and expression; this right includes freedom to hold opinions without interference and to seek, receive and impart information and ideas through any media and regardless of frontiers” (United Nations, 1993). Its twin Article 19 of the International Covenant on Civil and Political Rights reinforces the importance of this right. The ability to exercise this right rests in large part on the ability to have unrestricted access to language, and the corresponding ability to use this language in interactions with others.
This fundamental right to freedom of expression and opinion had been reenacted in the Convention on the Rights of Persons with Disabilities (CRPD) to palliate the constant breaches of human rights of persons with disabilities, including deaf people with intellectual disabilities, in exercising their freedom of expression and opinion. In its Art. 21(b), the Convention recognises the rights of deaf people with intellectual disabilities to have official interactions with public officials optimally in the national sign language. This legal provision provides an important ground for advocating and demanding the development of communication and linguistic rights for deaf people with intellectual disabilities, by stipulating that persons with disabilities can exercise the right to freedom of expression and opinion, including the freedom to seek, receive and impart information and ideas on an equal basis with others in all languages and in and all forms of communication of their choice.
Furthermore, Art. 19 of the present Convention recognises the right of persons with disabilities, including deaf people with intellectual disabilities, the right to live in their communities equally with others and to benefit from the same opportunities for participation in their societies. This equality of opportunities encompasses the availability of community services and facilities. For deaf people with intellectual disabilities, this implies the right to have a social life and have access to an array of services in their preferred languages, including adapted versions of national sign languages, which is an essential element in promoting their abilities to communicate. Such participation and inclusion in their societies can be rendered possible especially through the support of professional deaf people who are trained in relay interpreting and related to the level of respective national sign language competency of deaf individuals with intellectual disabilities by professional interpreters. Furthermore, it is a right of deaf people with intellectual disabilities to have sufficient access
to a big enough network of people, as well as have meaningful engagement and social inclusion within the deaf communities and the mainstream society.
In addition, Art. 9.1 highlights the obligation of States Parties to take measures enabling persons with disabilities, including deaf people with intellectual disabilities, to live independently and enjoy full participation in all areas of society, by progressively removing the barriers hindering their full inclusion and participation. In practical terms, this means that deaf people with intellectual disabilities are recognised the right to access trained professionals, which sometimes could also be accredited sign language interpreters (Art. 9.2(e)) to ensure their rights to communicate and interact with their environments, including in their schools, communities, places of work, homes, and in the interactions with their families, support persons, guardians, and caregivers.
The full inclusion of deaf people, including deaf people with intellectual disabilities, in society starts with education. Full inclusion in education for all children, including deaf children and deaf children with intellectual disabilities can be achieved only if the full education system becomes inclusive. Inclusive systems are those where: all children can access education (no-rejection policies); access related services, for example communication or sensory support and adapted learning material; access support they need to fully participate and learn with their peers with and without disabilities; consider the “whole systems”, “whole educational environment” and “whole persons” approaches.
Article 24 of the Convention recognises the right of every learner with disabilities to quality and inclusive education. Deaf learners with intellectual disabilities make no exceptions. The World Federation of the Deaf believes that quality and successful inclusive education for deaf learners, including deaf learners with intellectual disabilities, as per Art. 24 CRPD, can only be reached by models, which include the highest possible level of visual communication optimally orientated to national sign languages and other diverse ways of communication, as well as inclusive pedagogies/teaching methodologies that fit all students’ learning styles. In addition, the educational setting must follow the official governmental curriculum maximising the learning and academic abilities of deaf learners. Deaf learners, including deaf learners with intellectual disabilities, should be surrounded by their adults and signing peers and deaf adult role models
Inclusive education systems should also ensure that deaf learners and deaf learners with intellectual disabilities (and all those students at risk of being left behind) are regularly consulted and actively involved in monitoring inclusion. Most importantly, education systems should invest resources to ensure that all children – no matter their ability, gender, race, socio-economic background – are safe at school and have a feeling of belonging.
Possible Measures of Social Inclusion of Deaf People with Intellectual Disabilities
General measures for guaranteeing and promoting the human rights of deaf people are also applicable to deaf people with intellectual disabilities. In the following recommendations, the World Federation of the Deaf proposes measures specifically addressing the needs of deaf people with intellectual disabilities across the lifespan. These proposals align with the World Federation of the Deaf (WFD) Charter on Sign Language Rights for All and previous position papers.
- Use the advantages of the universal newborn hearing screening programs to provide deaf children with intellectual disabilities maximum support and meet their communication needs, including access to sign language at the earliest possible age (Moeller et al., 2013).
- Provide early and consistent support to families so that they are able to communicate (including signs) and national sign languages with their children. Art. 30 of the Convention on the Rights of the Child (CRC) recognises the right of children belonging to linguistic minorities shall not be denied its right to use its language to be read in conjunction with Art. 5 of the same Convention. The latter provision recognises the right of families of children, including deaf children with intellectual disabilities, to appropriate direction and guidance in the exercise by the child of the rights recognised in the CRC, including the communication and linguistic rights of deaf children with disabilities to use its national sign language. The combination of these two legal provisions grants to families of deaf children with intellectual disabilities the right to learn optimally the national sign language to best support the linguistic, communicational and cognitive development of the child. In addition, the CRC General Comment No 9 on the Rights of Children with Disabilities, in its par. 41,
recognises the rights of parents of children with disabilities, including deaf children with intellectual disabilities, to impart support and education on the family’s common language, including the national sign language, so that parents and family members can best support the linguistic and communication requirements of deaf children with intellectual disabilities and thus, maintaining a healthy family and social environment.
- Ensure access to inclusive, communicative and linguistically accessible social networks for deaf children with intellectual disabilities as early as possible.
- Offer inclusive education opportunities, which ensure the equal opportunities of deaf learners with intellectual disabilities within educational/vocational training programs as well as with family support are met.
- Start early planning of the transition process from childhood to adulthood, with the aim of achieving the full potential of deaf people with intellectual disabilities and establishing social inclusion among peers and the wider community. This transition p
- Adopt and improve service delivery to the communication needs of deaf people with intellectual disabilities. Service delivery for deaf adults with intellectual disabilities in many sectors poses particular challenges that are unique and different from the service delivery challenges for other adults who are just deaf. Being a low incidence population, there is a risk that providers are unaware of and underestimate the specialized social, linguistic, and communicative needs and training required to work with this population, which in turn can result in further social isolation. Qualified Deaf professionals have a key role when services are provided to this group.
- Provide sufficient access to a wide network of people who use national sign languages and can communicate with deaf people with intellectual disabilities (Gerich et al., 2012). Community-based living models and support services, where accessible opportunities for social communication are provided by signing deaf and hearing staff support the establishment of satisfying social relationships and increase opportunities for social inclusion and self-determination (Fellinger, 2020).
- Promote the inclusion of communities with deaf people with intellectual disabilities within local deaf communities and local communities, following Article 19 of the CRPD. This is preferable to the local inclusion of single individuals, who risk ending up isolated in non-signing settings.
- Foster inclusion into the deaf community. Deaf people with intellectual disabilities are members of deaf communities and local, regional, and national clubs and organizations of deaf people should take all measures to be fully inclusive for all deaf people, including deaf people with intellectual disabilities.
- Ensure appropriate sign language environments for deaf people with intellectual disabilities, which match their linguistic and communicative needs. Due to their varying support needs, it is crucial that deaf people with intellectual disabilities are provided access to sign language interpretation and other forms of visual communication. The involvement of relay Deaf interpreters is key in securing the success of this measure.
- Involvement in policymaking and program implementation. Deaf people with intellectual disabilities and their families should be included in the conceptualisation, implementation, monitoring and evaluation of policies and programs focusing on this particular and heterogeneous deaf population. This is a necessary step for their inclusion in wider social networks.
- Conduct further research. There is a need for more research and evidence-based best practices on successful models of the social inclusion of deaf people with intellectual disabilities.
Reference List
Bronfenbrenner, U. (1992). Ecological systems theory. London: Jessica Kingsley Publishers
Fellinger, J., Linzner, D., Holzinger, D., Dall, M., Fellinger, M., & Fogler, J. (2020). Development of Deaf Adults with Intellectual Disability in a Therapeutic Living Community. Journal of deaf studies and deaf education, 25(3), 261–269. https://doi.org/10.1093/deafed/enz056
Gallaudet Research Institute (2008). Regional and national summary report of data from the 2007–08 annual survey of deaf and hard of hearing children and youth. Washington, DC: GRI, Gallaudet University
Gerich, J., & Fellinger, J. (2012). Effects of social networks on the quality of life in an elder and middle-aged deaf community sample. Journal of deaf studies and deaf education, 17(1), 102-115. https://doi.org/10.1093/deafed/enr022
Moeller, M. P., Carr, G., Seaver, L., Stredler-Brown, A., & Holzinger, D. (2013). Best practices in family-centered early intervention for children who are deaf or hard of hearing: an international consensus statement. Journal of deaf studies and deaf education, 18(4), 429–445. https://doi.org/10.1093/deafed/ent034
United Nations (1993). Human Rights: The International Bill of Human Rights: Universal Declaration of Human Rights; International Covenant on Economic, Social and Cultural Rights; and International Covenant on Civil and Political Rights and Optional Protocols, New York: United Nations
United Nations. Convention on the Rights of Persons with Disabilities (CRPD). [cited 2021, Feb 28] Available from: https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-withdisabilities.html
United Nations. Convention on the Rights of the Child (CRC). [cited 2021, August 18] Available from: https://www.ohchr.org/en/professionalinterest/pages/crc.aspx
United Nations. Committee on the Rights of the Child (CRC Committee) General Comment No. 9 “The rights of children with disabilities) (2006). [cited 2021, August 18] Available from: https://www.refworld.org/docid/461b93f72.html
Van Naarden Braun, K., Christensen, D., Doernberg, N., Schieve, L., Rice, C., Wiggins, L., Schendel, D., & Yeargin-Allsopp, M. (2015). Trends in the prevalence of autism spectrum disorder, cerebral palsy, hearing loss, intellectual disability, and vision impairment, metropolitan atlanta, 1991-2010. PloS one, 10(4), e0124120. https://doi.org/10.1371/journal.pone.0124120
World Federation of the Deaf Charter on Sign Language Rights for All [cited 2021, Feb 28] Available from: https://wfdeaf.org/charter/
WFD Position Paper on Inclusive Education [cited 2021, Feb 28] Available from: https://wfdeaf.org/wp-content/uploads/2018/07/WFD-Position-Paper-on-Inclusive-Education-5-June-2018-FINAL-without-IS.pdf
WFD Position Paper on the Language Rights of Deaf Children [cited 2021, Feb 28] Available from: https://wfdeaf.org/news/wfd-position-paper-language-rights-deaf-children/
About the World Federation of the Deaf
The World Federation of the Deaf (WFD) is an international non-governmental organisation representing and promoting approximately 70 million deaf people’s human rights worldwide. The WFD is a federation of deaf organisations from 135 nations; its mission is to promote the human rights of deaf people and full, quality and equal access to all spheres of life, including self-determination, sign language, education, employment and community life. WFD has a consultative status in the United Nations and is a founding member of International Disability Alliance (IDA).
Website: www.wfdeaf.org
Email: [email protected]
About the Down Syndrome International
Down Syndrome International (DSi) is the global network of people with Down syndrome and their families. Our vision is a better world where all people with Down syndrome are fully included in society. We have over 150 member organisations worldwide and are a member of the International Disability Alliance (IDA).
Website: www.ds-int.org/
About the Inclusion International
Inclusion International (II) is the global network of people with intellectual disabilities and their families. Our vision is a world where people with intellectual disabilities and their families can take part and be valued equally in all areas of their lives in their communities. Our mission is to advocate for the inclusion of people with intellectual disabilities into their communities as valued neighbours and citizens.
II now represents over 200 organizations in 115 countries throughout five regions including the Middle East and North Africa, Europe, Africa, the Americas, and Asia Pacific.
Inclusion International is a founding member of the International Disability Alliance (IDA) and played an active leadership role in the negotiation of the UN Convention on the Rights of Persons with a Disability.
Website: www.inclusion-international.org
Read the position paper
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