Citizen Advocacy

Dr. Wolfensberger believed strongly that people who were more advantaged in life ought to advocate on behalf of those who were less so. Because his field of specialization was mental retardation, he specifically promoted advocacy by non-impaired people on behalf of impaired ones. He taught both graduate-level courses and open workshops on various forms of social advocacy, and wrote two publications on advocacy, both published by the Canadian National Institute on Mental Retardation: A Balanced Multi-Component Advocacy/Protection Schema, a brief monograph that explained the various types of advocacy and how they would relate to and complement each other; and, with Helen Zauha, the book Citizen Advocacy and Protective Services for the Impaired and Handicapped. It is this book and its subject that is of interest here.

One of the universal issues on the minds of parents of impaired persons is “what will happen to this son or daughter of mine when I am gone?” Parents recognize their child’s limitations, and fear that without the parents themselves there to offer protection and defense, their impaired child will come to harm–and parents have had good reason for such fears. It is these fears that have led parents to found, support, and even embrace institutions, as a sort of bricks-and-mortar security for their children; to establish trust and insurance schemes; to work for the passage of guardianship legislation; and sometimes, in extremis, once they see their own capacities fading, even to take the life of their impaired child, which they typically accompany by taking their own life once they are sure their son or daughter is dead.

In 1966, Dr. Wolfensberger attended a conference that was meant to address this parental concern, but it did not come up with any workable answers. This experience prompted him to conceive of what eventually came to be called Citizen Advocacy, which is an arrangement in which an individual and unpaid volunteer advocate is recruited to undertake a one-to-one protective engagement with an impaired person. These advocacy relationships could range from formal ones, such as adoption, guardianship, trustee, representative payee, to informal ones of friend and mentor. If an impaired person had such a citizen advocate, then the person’s family could be reassured that there would be someone to watch over the person when the parents were no longer able or around to do so. The advocacy relationship was to be mediated by a Citizen Advocacy office that would find the persons in need of such advocacy and protection, find competent persons in society willing to act as such advocates, match them up, and provide ongoing support as the advocate negotiated whatever trials might occur in the life of the impaired person.

Once again, Dr. Wolfensberger began to teach and promote Citizen Advocacy as a very desirable service arrangement, even for young people before their parents began to really worry, and for people who had no worried parents but had been abandoned by them, or whose parents were deceased. Starting in 1969, Citizen Advocacy offices were established in numerous US states and Canadian provinces, and eventually in England, Australia, and New Zealand as well. However, many such programs did not last long because funding for the programs has been hard to come by, especially because it is important that a Citizen Advocacy office have funds that were as free of conflict of interest as possible. Otherwise, once advocates start to make waves for the person of concern to them, funders might cut the funding, or threaten to do so, unless the advocates were kept under control. In fact, the normative response of any entity that finds itself advocated “against” is to try to restrict or control the advocacy, rather than to welcome it and make needed changes. As a result, advocates have sometimes been barred from service premises, they might not be allowed to contact the person they advocated for, and so on. Funding for Citizen Advocacy that does not constrain how freely advocates can act has not been easy to find, or to hold onto, and Citizen Advocacy programs have therefore been fragile. Nevertheless, Citizen Advocacy programs are still operative in a number of states and provinces, and in Australasia, and some have been around for decades. Although the number of people they have been able to serve is relatively small, the individual unpaid advocates they recruit have protected and saved the lives of many impaired people; obtained for them housing, work, schooling; been by their side as they have endured family break-up, homelessness, and imprisonment; protected their rights; reunited them with estranged family; taken them into their own families–and in many other ways revealed the power of freely-given relationships to make a positive difference in the lives of vulnerable persons.

At one time, both the Canadian National Association for the Mentally Retarded, and the US National Association for Retarded Citizens, supported Citizen Advocacy, conducted training on it, and published material on it. From approximately 1989 to 2004, there was an irregular publication called The Citizen Advocacy Forum, published by one of the more active Citizen Advocacy programs. In addition, most Citizen Advocacy offices issued their own newsletter.

Susan Thomas (April 2017)

Wolfensberger, Wolf P. & Zauha, Helen. (Eds.). (1973). Citizen advocacy and protective services for the impaired and handicapped. Toronto: National Institute on Mental Retardation.