Autism and A Human Rights Approach

“People with autism are incapacitated only by the limits imposed upon them by others”.  Quote by William Stillman.

0
602
Geraldine Graydon - dignity-clipart-Human-Rights-Dignity
  • Many Irish people with Autism do not have access to appropriate education, training, healthcare and support services.
  • Other countries have developed a range of autism-informed, autism-friendly services for both children and adults.
  • The “medical” model is an approach to disability that puts the impairment in the foreground, whilst the person fades into the background. The rights-based approach to disability promotes a shift in values away from this model towards a social model that sees persons with disabilities as active subjects with rights and not passive objects of assistance.
  • Recognising and meeting special needs is the key to inclusion for Irish citizens on the Autism Spectrum.
  • In many European countries, the rights of people with disabilities are a very low priority for policymakers. Where government policies that support social inclusion of people with disabilities exist, what is written on paper and what happens in practice are often two very different things. Moreover, organisations of people with disabilities are rarely consulted about decisions that concern them. This makes it very difficult to provide input for policy development and implementation. Lack of resources is indicated as the main barrier in meeting the needs of people with disabilities and the main reason for a treatment/support gap.
  • The Irish Government has yet to ratify the UN Convention – the announcement by the Minister of Disability that the Cabinet has approved the ratification of the UN Convention means nothing unless a date is set for this to happen.
  • We cannot fix the past, but we can make the present and the future autism-informed and friendly for all autistic individuals and their families living in Ireland.

People with autism are incapacitated only by the limits imposed upon them by others”.  William Stillman, Founder of the Pennsylvania Autism Self Advocacy Coalition (PASAC)

Many Irish people with complex needs, including people with Autism, do not have the opportunity to access the appropriate education, training, healthcare and support services they need. This unfair discrimination takes place because:

  1. The ‘medical model’ of disability cultivates the idea that people with severe disabilities cannot lead lives worth living.
  2. Health and Education systems use lack of funds/resources to deny the Autism-friendly environment and skilled supports needed to cope with the challenges presented by autistic individuals and their families.

International evidence supports the provision of highly structured, intensive educational and behavioural programs/interventions that are autism-informed and autism-friendly. Other countries have developed a range of autism-informed, autism-friendly services for both children and adults on the autism spectrum.  These strategies have given their citizens a rights-based approach and equal access to affordable quality services; individuals on the autism spectrum in these countries have been enabled to enjoy equal opportunities, to participate as citizens in all aspects of life in their community. This happened because they had an autism-specific framework that recognised the unique features of autism.

Why a Rights-Based Approach

The rights-based approach to disability recognizes that both the social and physical environments are factors in the disablement process (World Health Organization, 2001; Brandt & Pope, 1997) and that the impairment may have different impacts depending on the person, the environment and the resources available. This new conception demands a paradigmatic shift from the so-called “medical” model towards a “social” model of disability. The “medical” model is an approach to disability that puts the impairment in the foreground,

whilst the person fades into the background. The rights-based approach to disability promotes a shift in values away from this model towards a social model that sees persons with disabilities as active subjects with rights and not passive objects of assistance.  According to a rights-based approach and in relation to the available European and international legal framework, access to fundamental rights, such as healthcare and services, cannot be denied to any person on the grounds of disability or other condition, including age. From this perspective, healthcare systems cannot, in any event, restrict or violate any individual right recognised by international and national normative sources.

While European Institutions have never drafted a legal instrument that is specific for disability, nevertheless disability issues are taken into account in several legal instruments on human rights. Article 14 of the European Convention on Human Rights states that the principle of equality means treating equals equally and providing different adapted measures for people in different situations. In particular, “the right not to be discriminated against in the enjoyment of the rights guaranteed under the Convention is also violated when States without an objective and reasonable justification fail to treat differently persons whose situations are significantly different.”

In other words, human difference in a democratic society should be viewed positively and should be responded to with discernment, in order to ensure real and effective equality. By underlining the need to treat differently persons whose situations are different, the principle of equality states the conditions to ensure equal opportunities for all. All services to people with disabilities should be characterised by an individual perspective. This means that they should tackle the needs of each individual with an aim to improve the quality of life and equality of opportunities of the person concerned. Recognising and meeting special needs is the key to inclusion for Irish Citizens on the Autism Spectrum.

Article 15 of the Revised Social Charter states the right to independence, social integration and participation in the life of the community. To this end, States which have signed up to and ratified the Charter have an obligation to promote the full social integration of persons with disabilities and their participation in the life of their community. It should be noted that Article 15 applies to all persons with disabilities, regardless of the nature and origin of their disability and irrespective of their age. It thus clearly covers both children and adults on the autism spectrum.

The EU Charter of Fundamental Rights – notably article 26 – recognises as a fundamental right “the right of persons with disabilities to benefit from measures designed to ensure their independence, social and occupational integration and participation in the life of the community”.  As the entitlement to the enjoyment of rights admits no hierarchy, the nature or severity of impairments cannot justify the denial of the right to habilitation or rehabilitation.

Despite the existing International and European legal instruments and undertakings stating human rights for all and proclaiming that everyone is entitled to all rights and freedoms without distinction of any kind, it has been recognised that “persons with disabilities continue to face barriers in their participation as equal members of society and violations of their human rights in all parts of the world”. Therefore, a long process, launched by the disability community, began in order to foster the full enjoyment of human rights by all persons with disabilities through a legal instrument appropriate for all their different needs, as well as for the different cultures and political situations in the world. This process started in 2001 and led to the conception, drafting and adoption of the UN Convention on the Promotion and Protection of Rights of Persons with Disabilities on August 25th, 2006.

This new Convention does not establish new rights for persons with disabilities. It is based on existing human rights Treaties and their application to people with disabilities. Autism Spectrum is not explicitly mentioned in the articles of the UN Convention; nevertheless, the Preamble recognizes “the need to promote and protect the human rights of all persons with disabilities, including those who require more intensive support”. Legal instruments cannot allow exceptions of any kind. The special needs of individuals on the autism spectrum must be taken into account, in order to guarantee these persons their full enjoyment of the rights stated in the UN Convention without discrimination. The strongly rights-oriented perspective of disability introduced by this Convention represents a unique opportunity to radically change mentalities and policies towards persons on the autism spectrum who are still the excluded among the excluded in the enjoyment of human rights.

In many European countries, the rights of people with disabilities are a very low priority for policymakers. Where government policies that support social inclusion of people with disabilities exist, what is written on paper and what happens in practice are often two very different things. Moreover, organisations of people with disabilities are rarely consulted about decisions that concern them. This makes it very difficult to provide input for policy development and implementation. Lack of resources is indicated as the main barrier in meeting the needs of people with disabilities and the main reason for a treatment/support gap.

Specific autism awareness training programmes need to be provided for education, healthcare professionals, policy decision-makers and public administrators, in order to improve their understanding of the rights–based approach to disability, to deal with prejudices and misunderstanding that exist regarding autism.  There is an urgent need to change the culture and mentalities that exist at present in Ireland towards people on the autism spectrum and their families.

All the representative organisations in the field of Autism in Ireland should be systematically involved at all levels of the policy and decision-making process, from designing policy plans to evaluating the outcomes and quality of the programmes, services and instruments.  Evaluation systems for the quality of the services for persons on the autism spectrum should focus on individual and social outcomes in terms of enjoyment of human rights, equal opportunities and quality of life of the person more than on the structural characteristics of the service. Awareness raising, acceptance by the state that autism needs a strategy, actions by advocacy organisations are therefore needed to foster a radical change in health, education and employment policies for persons on the autism spectrum.

Although these actions are not likely to provide immediate solutions, they are the only way to achieve durable results. Ratification by the EU of the UN Convention on the Rights of Persons with Disabilities (“the Convention”) is an example of what can be achieved through awareness-raising. Thanks to the efforts of the disability community over many years, the rights to healthcare and appropriate services – stated in Articles 25 and 26 – are now protected by this Convention which is a legally binding treaty.  But the Irish Government has yet to ratify the UN Convention – the announcement by the Minister of Disability that the Cabinet has approved the ratification of the UN Convention means nothing unless a date is set for this to happen.

We cannot fix the past, but we can make the present and the future autism-informed and friendly for all autistic individuals and their families living in Ireland. Acceptance by the Irish Government and their agents that individuals on the autism spectrum and their families/ carers exist would be a starting point; the next step would be to put in place an Autism Strategy for Ireland in 2018, bringing us in line with England, Scotland, Wales and Northern Ireland who already have such a strategy. Individuals on the autism spectrum and their families should be fully involved in any consultation and decision-making process that affects their lives, both as individuals and collectively as people with a living experience of autism.

Geraldine GraydonGeraldine Graydon MSc, Dip. Advocacy, I have lived with autism all my life – my father, son and grandson are on the spectrum.  I have been an Autism Advocate, worked as a Transition Coordinator, Coach, Mentor and Trainer, in a voluntary and professionally capacity for over 25 years.  Co-Founder of AsFan (Autism Spectrum Family Advocacy Network) in 2017.  AsFan is a not-for-profit group who work in partnership with families, schools, service providers and state bodies. AsFan provide information, advice, advocacy, support and skills training for families, professionals and healthcare professionals who live with or work with individuals on the autism spectrum.

LEAVE A REPLY

Please enter your comment!
Please enter your name here