Miller and Katz (2002) defined inclusion as:
“... a sense of belonging: feeling respected, valued for who you are; feeling a level of supportive energy and commitment from others so that you can do your best.”
Human Rights - Embracing Diversity
Inclusion is ‘the state of being included’ - a universal human right that aims to embrace all people, irrespective of race, gender, disability or other attribute that can be perceived as different. Inclusion ensures that everyone feels they belong, are engaged, and are connected. It is about valuing all individuals, giving equal access and opportunity to all and removing discrimination and other barriers to involvement. A Human Rights approach should ensure positive processes and outcomes for disabled people including treating people with dignity and respect, to ensure that society no longer disables its citizens. Everyone has something to contribute and should be able to do so without having to repeatedly confront societal barriers.
Inclusion is not 'just a disability issue'. It is about encouraging everyone to learn to live together, to respect diversity, and to build community as we learn to share our attributes. Many people are fearful about ‘different’ simply because they are not familiar with it. We can all support inclusion by embracing diversity, advocating for accessibility, and promoting awareness for Angelman syndrome in our own local communities.
People with Angelman syndrome are non-speakers, and without words it is not possible to communicate effectively, develop meaningful relationships, access a full education, express opinions, or participate fully in society. Because of their lack of words, the greatest barrier they face is that of being excluded, ignored and forgotten. In order to make inclusion work for them, individuals with AS first need to be given the opportunity to express themselves. In the 21st century it is ideal that very soon after diagnoses, families should be introduced to Augmentative and Alternative Communication (AAC) and supported by a Speech Language therapist. Read more on Communication here.
Individuals who have Angelman syndrome face many challenges but it is a known fact that their receptive language (the ability to understand information) is much more advanced than their expressive language (putting thoughts into words and sentences). This is similar to stroke victims who suffer with aphasia in that the inability to speak is not a reflection of their intelligence. People who have AS should be treated the same as everyone else. They need to know that we presume their competence - that we believe in their potential and in their intellectual abilities. Our acceptance and encouragement will help them reach their maximum potential.
Disregard comments by others (including professional) who may suggest that your child with AS will never learn, is severely mentally disabled, has the mental age of a toddler, doesn't understand, etc. This is simply not true. People with AS are always learning – they are continuously observing, listening, taking in information, experiencing deep emotions, and remembering things that go on around them – just like everyone else.
There are people with Angelman Syndrome who have learnt to read and write, ride a bicycle, jump on a trampoline, swim, ski, roller-skate, and more! There are people with Angelman Syndrome who are fully included at regular schools (with support) and some have jobs in the workforce. What has made this possible is not necessarily their genotype, family genes or gifts and talents, but rather by being surrounded by people who supported them, believed in their potential and abilities, provided opportunities, and always presumed competence.
Inclusion in the NZ Education System
The New Zealand Curriculum and Te Marautanga o Aotearoa require that all students’ identities, languages, cultures, abilities, and talents are recognised. The Curriculum is non-prescriptive and provides for a flexible learning approach. Schools have a mandate to develop their curriculum in a more personalised way as they notice, recognise, and respond to the needs of all their learners and their communities.
Ministry of Education policy documents:
- Success for All – Every school, every child
- What an inclusive school looks like
- Education that fits: Review of international trends in the education of students with special educational needs
Inclusive Education Action Group (IEAG)
Creating Inclusive Schools & Communities in NZ. The Inclusive Education Action Group (IEAG) advocates for real change in the education system. They promote knowledge, attitudes, policies and practices that facilitate inclusive education so all children, young people and adults, including those with disabilities, have equal opportunities to learn, belong, and flourish in their local, regular, educational setting.
Your Rights in NZ - and how to access them
- UN Convention on the Rights of Persons with Disabilities (CRPD): The Convention is intended as a human rights instrument with an explicit, social development dimension. It adopts a broad categorization of persons with disabilities and reaffirms that all persons with all types of disabilities must enjoy all human rights and fundamental freedoms.
- The Code of Health and Disability Services Consumers’ Rights: The Code extends to any person or organisation providing, or holding themselves out as providing, a health service to the public or to a section of the public - whether that service is paid for or not. With regard to disability services, it extends to goods, services, and facilities provided to people with disabilities for their care or support, or to promote their independence, or for related or incidental purposes.
- Human Rights Act: Human rights legislation in New Zealand. There are two main laws in New Zealand that specifically promote and protect human rights. These are the Human Rights Act 1993, and the Bill of Rights Act 1990.
- Making a Complaint - the processes (ACC, Work and Income, etc)
Health and Disability Commissioner; Making a complaint can be a difficult thing to do, especially if you're not sure of the
best way to get your point across. The HDC can help you to work out the best solution.
The IEAG recognises that disabled people are often denied the right to participate in education alongside other people of their age. They aim to change attitudes and practice by providing information about inclusion, training & workshops, networking, research and advocacy. Read more about the Voices Project, here.
United Nations Convention on the Rights of Persons with Disabilities
The CRPD is an international Human Rights treaty of the United Nations, intended to protect the rights and dignity of persons with disabilities. It is aimed at protecting the dignity of persons with disabilities and ensuring their equal treatment under the law including the right to health services, education and employment.
The NZ Government signed the Convention at the United Nations on 30 March 2007, and ratified it on 26 September 2008.
New Zealand Disability Strategy
The New Zealand Disability Strategy 2016-2026 was launched by the Minister for Disability Issues Hon Nicky Wagner on 29 November 2016. You can read and download the Strategy in a range of accessible formats, here. You can also read the media releases and the Cabinet paper agreeing to the new Strategy.
Social Barriers facing People with Angelman syndrome
1. Lack of speech – This makes it difficult to engage in society, difficult to make friends and build meaningful relationships. They can easily be ignored, isolated, spoken about in their presence.
2. Mobility challenges (for many) – Lack of accessibility for wheelchairs in public spaces/to the beach/parks/public transport; lack of other mobility supports, eg. ramps or hoists in public pools, etc.
3. Food/Eating challenges (for many) – Going out to eat in other homes or in public places can present social challenges due to feeding difficulties and/or dietary restrictions, inability to use utensils appropriately, or impulsive and inappropriate behaviors related to food
4. Toileting (for some) – Lack of suitable spaces/disability toilets for changing
There are many ways to adapt the environment and/or add supports to make full inclusion possible. With the use of AAC for communication, ongoing advocacy for mobility access (eg. advocating for an Accessibility Law, Changing Places, and Caroline's carts in your local area), and creative problem solving with an OT / Behavior Specialist around eating - everyone who has AS should be able to be fully included in all mainstream social activities in NZ.