Michael Kendrick/John O’Brien – Self Advocacy

Readers might be interested in the views of two prominent consultants whose views I sought in connection with a question relating to human rights and the role of advocacy,

Rob Hopkins (Research and Communications Officer BOC Clare)

The Learning Disability movement is often portrayed as being on a continuum in the wake of other civil rights movements.

J O’B This is a common construction, and partially accurate, I think. The issues are context and history,

I think your phrase “in the wake of” shows what it might overlook: the well organized efforts of families of people with developmental disabilities to create public support for the local services that they associated to invent.

I think it’s less “in the wake” than “on similar waves”. The leaders of these efforts -which began in the 1930’s and picked up organizational momentum after WW II– sometimes drew explicitly on the legal theories of human rights (see, for example, http://www.gunnardybwad.net/spudich.html for a strong US connection to the 19 23 declaration on the Right of the Child through Gunnar and Rosemary Dybwad, non-parent leaders of the parent movement in the US and internationally.)

This is a form of human rights work that works through influencing legislation, and later by bringing law suits.  Various forms of  organizing for direct action have played a very limited role except for groups like ADAPT  that come along late in the ‘80’s (see http://www.mouthmag.com/ for an in-your-face all disability approach that, still somewhat exceptionally, includes the perspective of people with significant intellectual disabilities and -more importantly, their families))

All this grew up in a time -late 60’s through 70’s- when “maximum feasible participation” ( principle of President Johnson’s “War on Poverty”) strongly shaped US reform efforts; so every policy and legal settlement included the requirement for parent participation and mechanisms like Developmental Disabilities Councils (early ‘70s)(think England’s Partnership Boards) were designed to bring the relevant bureaucrats together with user representatives to make master plans. Though the rise of self advocacy has earned people with developmental disabilities themselves a seat at many planning tables, their power remains, in general, pretty limited.

There are some ideological barriers for sketching the story this way: For example…

  • A belief that the voice of the disabled people acting collectively and disabled individually should be privileged  above others, mixed with the often unfortunate family experiences of articulate self-advocacy leaders  (many of the first generations of whom were institutionalized by their parents) makes “ourselves (disabled people” alone in charge”) a powerful proposition.
  • A belief that many of the services founded by parents are outdated, overly protective, and unduly limiting of people’s rights and the fact that parents often raise difficult questions or outright oppose what seem be progressive changes, can lead to discrediting them.

1. What meaningful role in establishing human rights, can advocacy groups of people with a learning disability perform?

M.K. Though many people may not, at present, take the voice of people with disabilities seriously enough, their credibility has nonetheless expanded over the past several decades, as many people have wanted to hear directly from people with disabilities instead of relying entirely on proxy voices such as families, professionals and others that purport to speak for them. This reflects a new appreciation of the value of people speaking for themselves and the fresh alternative this brings to the former paternalistic role society has taken to dependent and vulnerable persons. Nonetheless, we are still in the throes of this transformation, so the change in attitude that this represents is still a matter of everyday struggle in far too many places, notwithstanding the “hit and miss” progress we are enjoying.

How such attentiveness to people with disabilities can help, (via “nothing about me without me”), in establishing rights has many facets.

First, it allows people with disabilities to speak in the first person and thereby clarify who is speaking and whose interests they actually represent, i.e. it upholds the authenticity of their voice and their right to be that voice.

Secondly, it links the rights of persons with disabilities to the broader shared and universal rights of other citizens by waiving the premise that rather than full enfranchisement for people with disabilities what is required in their instance is substitute decision-makers.

Lastly, it substitutes the principle of positive presumption that people with disabilities ought to be presumed to have all rights, unless this is lawfully restricted in some way.


  1. Support one another to live their deep dreams and seek the conditions they need for their gifts to find expression in contribution to community life. We need many more Larry O’Bryan’s -literally pushing across borders to find a place where he can be at home and his art can find expression. Living well as a contributing citizen in genuine contact with non-disabled fellow citizens at work, in the pub, in the neighbourhood is the foundation of strong advocacy.
  2. Do the hard work of developing a point of view and positions on policy issues. People First in Washington State has an admirable history of looking at difficult policy issues and moving beyond simply demanding recognition  or re-telling personal grievances to a distinctive intervention in the policy world.
  3. Clarify the support that particular people need to facilitate meaningful participation in policy making groups and contribute to developing it.
  4. Recognize the people that they do not yet represent -typically people with more substantial impairments- and figure out ways to reach out to them.
  5. Build respectful and equal personal connections among those who have positions of authority.

2.       What role should service providers play in helping to facilitate people with a learning disability to work together to affect change on the political stage?

M.K. My view would be that not all people with disabilities are necessarily oriented to either politics or campaigning for change. For such persons, it would be unsuitable to coerce them into such roles or to unduly promote the roles as this would be reflective of our agenda not theirs.

Nonetheless, this would still leave out many people with disabilities who are genuinely attracted to politics and change work such as advocacy and it is these persons that service providers could conceivably play a supportive role towards.

However, as one can see in the instance of many people with disabilities and their self-advocacy groups, these groups are unduly under the control of service providers whether intentionally or otherwise. Hence, service provider involvement needs to be at arm’s length with the independence of the person and the group a key ethic.

If this condition is met, then they can be allies in change work.

J.O’B. I see this first of all, as an instance of the fundamental problem of offering good support in any area of interest to a person (or group of people) with disabilities.

  1. How can we behave in ways that justify people’s trust and allows us to build relationships in which we can discover those people with a calling for political action by listening deeply to them?
  2. How do we then live out interdependent relationships through which those people can express their own perspective? This kind of interdependence allows open conversation about the effects of a person’s impairments on their ability to perform in the political arena in a way that is as effective as they would want to be, and learning what works and what doesn’t work,
  3. How can we help people find mentors for their political efforts -both among more seasoned advocates with disabilities and in the wider field of politically influential people?
  4. How can we redesign our services to individualize supports? This makes it more likely that people can get the practical help they need to participate (rides, etc.)

After that, it seems to me a matter of struggling for relationships that maximize people’s control of their own lives at every level of the service itself: This involves individual autonomy (e.g. control of at least a virtual individual budget).

Adopt a deeply staff self-critical view of self-advocacy groups that are creations of the service itself. The measure here is what level of power the group exerts: does it plan some social events and complain to the management or are people active and influential participants?