Working with Persons with Intellectual Disability through Self-advocacy
In a crowd, in a street and in most community settings, persons with intellectual disability are conspicuous and absent at the same time. They are conspicuous because having a cognitive impairment is often (though not always) accompanied by particular physical features that mark a person as someone with an intellectual disability and because, in turn, the label ‘intellectual disability’ unfortunately still evokes extremely negative connotations.
They are absent because persons with intellectual disability still encounter significant hurdles in their bid to be active participants in their community ‘on an equal basis with others’ as the United Nations Convention on the Rights of Persons with Disabilities (United Nations 2006) requires. Working with persons with intellectual disability therefore entails striving towards the removal of disabling barriers and towards enabling them to be accepted for who they are.
It is important to point out that this work is done with persons with intellectual disability and not simply for them. This approach is in line with the slogan of the disabled persons’ movement ‘nothing about us without us’ (Charlton 1998), a slogan which speaks to the need for persons with disability to be the ones in control of their own lives and to be actively involved in decisions concerning them. For persons with intellectual disability, the principle underlying this slogan is best realised through self-advocacy, and it is in this area that I have carried out a lot of work over the past fifteen years. Broadly speaking, self-advocacy means speaking for oneself and being directly involved in decision-making processes that affect one’s life, whether directly or indirectly. For persons with
intellectual disability, it means being provided with support to be a self-advocate. Such persons often need support to be able to understand information that may be too abstract or complex for them to process unaided.
They may also need support in understanding the pros and cons of different choices, in appreciating the practicability of implementing some decisions, in weighing the consequences of different choices, and in discerning what is the best choice for them in any given situation. They may even need support in reflecting about their will and preferences and in articulating these in a clear and assertive manner.
Finally, they may also need support in implementing a decision, which may range from something practical – like being given a lift to and from home – to more complex courses of action – such as dealing with the negative outcomes of a decision that the person had taken. Consequently, for persons with intellectual disability
In this type of group, the committee members are persons with intellectual disability, who are provided with support to conduct meetings, to take decisions and to act on them.
self-advocacy very often entails being provided with support by someone who can guide them through these different processes without ending up taking decisions in their stead.
The most significant community-based work that I carry out in this area is that of being a support member of a self-advocacy group. In this type of group, the committee members are persons with intellectual disability, who are provided with support to conduct meetings, to take decisions and to act on them.
I do this work through Grupp Flimkien Naslu, a group that I had helped set up in 2004 and which I still support. Over the past sixteen years, the group has offered opportunities to make friends and to socialise, for members who have an intellectual disability as well as for support members. These relationships continue to grow outside the group as well and the group members often seek out support members when they need help in their everyday lives. Support members are uniquely placed to act as mentors, advisors, or simply as friends because they are not related to the person with intellectual disability and do not work with them in a professional capacity.
Community engagement is not only about academics lending their expertise in areas of community development that are relevant to their work, but also about ensuring that the voice of those living particular realities in their respective communities is also heard at the university.
Persons with intellectual disability are experts by experience (Care Quality Commission, 2020) and it is important that they are supported to make their voice heard in different fora. My work entails co-lecturing with speakers with intellectual disability on self-advocacy and conducting inclusive research. The latter involves doing research with persons with intellectual disability as co-researchers, thus supporting them to actively participate in the
whole research process from choosing the research topic through to conducting the research and disseminating findings.
As a supporter of self-advocacy work, I am aware of potential pitfalls. I have sometimes erred too much on the side of caution by assuming that a person with intellectual disability needs support in something that they can do on their own. And I have sometimes erred on the other side – assuming a person can understand something when in fact they need support. Self-reflexivity is therefore particularly important and an essential part of the process of reflection on one’s own role as a self-advocacy supporter is listening to the person.
I find my involvement in self-advocacy work very fulfilling. It enables me to put to good use all that I have learnt and taught along the years about the best ways of removing disabling barriers for people with intellectual disability and about promoting their empowerment. It
also enables me to witness just how much a person can flourish when they are given support. And it has enabled me to learn much about life from the perspectives of persons who have different life experiences.
My dream is that we create a world where the absence of people with intellectual disability in the mainstream of society becomes conspicuous, and the conspicuousness of the negative connotations attached to label ‘intellectual disability’ are absent.
Charlton, J. (1998). Nothing about us without us: Disability oppression and empowerment. Berkeley: University of California Press. Care Quality Commission (2020). Experts by experience. Available from: https://www.cqc.org.uk/about-us/ jobs/experts-experience
United Nations (2006). Convention on the rights of persons with disabilities and optional protocol [online]. Available from: https:// www.un.org/development/desa/ disabilities/convention-on-the-rights-of-persons-with-disabilities.html