Exploring personal rights and self-advocacy in learning disability

Jennifer O’Raghallaigh, Child Study Centre, St Vincent’s, on recent articles that debate the effectiveness of efforts to protect and promote the personal rights of people with learning disabilities.

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It is easy to acknowledge that people with learning disabilities possess personal rights that should be respected and that they should be encouraged to recognise those rights and advocate on their own behalf. However, the gap between that easy acknowledgement and operationalised rights within a self-advocacy movement has proved difficult to bridge, as is discussed in several recent journal articles.

In her exploration of the European Convention of Human Rights (ECHR), Simone Aspis highlights the total failure to mention the rights of those with disability, or with a physical, sensory or mental impairment. While Article 14 states that individuals should be able to enjoy their freedom without discrimination on the grounds of sex, race, colour, language, religion or public opinion, it makes no reference to people with disabilities and thus ‘fundamentally ignores disabled people who have had their rights to freedom violated throughout history via enforced imprisonment in segregated institutions’.

Although learning disability is not specifically mentioned, Aspis does identify the relevance of several Articles for those with learning disabilities, making reference to those covering freedom of expression, thought, peaceful assembly and the right to practise religion. Discussing her own experience, she states: ‘Whilst at special school, I was denied my freedom of expression. I was punished and threatened if I spoke up about my education, the staff who emotionally abused me and even when I disagreed with my headmaster’s views on politics!’ Aspis stresses the need to use the ECHR as a framework to bring in a constitutional bill of rights.

Lisa Waddington also addresses the lack of inclusion of learning-disabled citizens’ rights in the European Community, particularly within the Treaty on European Union. She states that disability discrimination results in many disabled citizens being unable to fully exercise the rights conferred on them by Community law. For example, European citizens are guaranteed the right to free movement, but discrimination restricts the access of those with learning disabilities to transport, housing and support for independent living. Additionally, the right to vote guaranteed to citizens is undermined for those with disabilities by discriminatory practices such as locating polling stations in buildings which are physically inaccessible for wheelchair users, or failing to provide ballot papers with large print or in Braille. Waddington emphasises the need to address these concerns on a European level, with the inclusion of a provision in the Treaty giving the Community the competence to adopt binding instruments to combat disability discrimination.

The importance of self-advocacy in the learning-disabled population is discussed in Dan Goodley’s article. He examines the rise of contemporary demands for innovative methods of ‘user participation’ and the impact that these have had on learning disability theory, encouraging a social model that demands ‘social adjustment and call[s] for individual and collective responsibility of all societal members to redress disabling environments’.

But no one can advocate more effectively for the rights of those with learning disabilities than themselves, Goodley points out, which emphasises the need for services to provide training and support for self-determination and self-advocacy.

Training in self-advocacy poses challenges for service providers to foster independence while playing an advisory role. Goodley includes a quote from the Newcastle self-advocacy group Speak for Ourselves, which identifies an advisor as ‘Someone who gives support especially in the early days … [and who] shouldn’t run your group but help you to run it’.

Goodley acknowledges that self-determination and self-advocacy are vague notions that don’t readily represent the diverse experiences of self-advocates, but states that they can serve as reminders that people with learning difficulties vary in their ambitions just like anyone else. ‘Diversity should be celebrated and supported’, he writes.

The new obligations and responsibilities of service providers are stressed by Dennis Mithaug, who points out that the right to self-determination identified for those with learning disabilities puts additional responsibilities on services to provide a social environment that creates opportunities for choices and actions. The interactional nature of self-determination requires that the environment gives experiences meaning, which can in turn create inconvenience and stress for service providers. Mithaug asks: ‘Can members of the helping professions claim to take the right to self-determination seriously if they have not taken their new obligations implied by that right seriously?’

One very practical programme designed to provide a meaningful skills training experience and to promote self-advocacy is discussed by Henrietta Bond. The Video Journalism Project in London is designed as a training project that teaches people with learning difficulties to make videos as a medium of self-advocacy. The month-long courses train service users in the research and creation of videos about training and employment for people with learning difficulties and provide an opportunity to develop transferable skills in communication and team working.

Video is identified as a particularly relevant medium for people with learning difficulties because it does not require literacy, operates in real time and uses clearly identifiable images and sound. Heather Davis, the project coordinator, acknowledges the self-advocacy role of the training and states: ‘People with learning difficulties are best placed to make videos for other people with learning difficulties or to help staff in local authorities and charities understand their perspective’.

Although it is clear from these articles that movement within services from the acknowledgement of client rights to effective training in self-advocacy poses serious challenges, it is also clear that these challenges must be met to ensure services in line with our visions of the best possible practice.

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