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.

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Communication Barriers

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. 

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• The Right to a Voice

• Communication Bill of Rights

 

Presuming Competence

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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.

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• Strategies for presuming competence
• Inclusion Works: Angelman Syndrome - A Fact Sheet for Education

 

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. 

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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. 

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Inclusion in the NZ Education System

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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.

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Ministry of Education policy documents:

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• 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)

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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

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• 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.​

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• 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. ​

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• 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. ​

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• 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. 

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• Inclusive Education Action Group (IEAG): 

      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.

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