Research: Lack of influence and participation by self-advocates

Related imageResearch and Evidence: Representation

Lack of influence and participation by self-advocates in organisations acting on their behalf

Advocacy organisations and other bodies that speak on behalf of people with learning difficulties or autistic spectrum conditions tend be led and controlled by non-disabled people rather than by self-advocates, Gabor Petri’s doctoral research findings suggest


The disabled people’s movement has successfully influenced laws and policies across the world over the past three decades. Today, improved accessibility, progress in deinstitutionalisation and community living, anti-discrimination laws and other policies mark the impact of the continuous advocacy by disabled people’s organisations (DPOs).

DPOs are seen as representative voices and are usually led and controlled by people with disabilities. However, there are exceptions – those speaking on behalf of people with autistic spectrum conditions (ASC) and with learning difficulties are usually controlled by parents or professionals.

To date, very few studies have explored what hinders self-advocates’ better involvement in their ‘own’ organisations.

This research aims to find factors that help and hinder self-advocates in the disability movement, including in their own organisations.

It will be completed in December 2018. The early findings are presented here.

Key messages

  • Disabled people’s organisations are led and controlled by disabled advocates.However, most of those speaking for people with learning difficulties or autism are still led by non-disabled people.
  • Self-advocates, parents and professional advocates feel that self-advocates are often not involved in making decisions about how organisations are run.
  • Participation by self-advocates in organisations speaking for them is often tokenistic.
  • Self-advocacy and support give people the chance to gain control over their lives.

Key findings

To assess the participation of self-advocates within DPOs and in the disability movement, Arnstein’s ladder of participation was used (Arnstein, 1969).

Subjects – paid, professional advocates, parents and self-advocates – were asked to place self-advocates on the ladder to show how they saw their participation in the democratic decision-making processes of DPOs, charities or the broader disability movement. A simplified ladder was used for people with learning difficulties. Altogether, 44 people (n=24 in Hungary; n=20 in the UK) took part.

Results were consistent between the UK and Hungary: self-advocates in both countries felt their involvement in the broader advocacy movement of disabled people and in formal organisations was often tokenistic, and they had few opportunities to influence DPOs’ decisions.

The views of professional paid advocates and parents were similar; they also thought DPOs were not ensuring the full participation of people with learning difficulties or ASC in them. Even when people are consulted about issues, their responses are not necessarily considered.

Several self-advocates said they thought most people with learning difficulties or ASCs had ‘no power’ and lacked any opportunity to influence how organisations speaking on their behalf worked. Parents and professional advocates agreed.

One autistic self-advocate in Hungary said basic human rights principles were not respected at all within most DPOs:

‘There is the saying ‘nothing about us without us’, which I think is in the Convention [on the Rights of Persons with Disabilities] itself, and this means they [DPOs] have to involve us, so that we are there in the decisions taken about us. But this is not happening at all.’

A British professional advocate, like other participants, emphasised the importance of support for people who wished to speak up:

‘We tend to be listening but we actually don’t give enough options for them and the support to be truly the way it should.’

A Hungarian advocate (who is both a family member of a person with learning difficulties and a professional advocate) highlighted that people with learning difficulties, despite shortcomings, were still more included in DPOs than in broader society:

‘In Hungary, people with a learning disability are generally only subject to therapy or are being informed at best. Within advocacy organisations, they are on the level of consultation or placation.’

A professional UK advocate related this to the broader issue of citizen involvement in public policy and gave the example of DPOs being consulted by public bodies:

‘Public bodies often assume this is ‘we asked you’ or ‘we have given the opportunity to say what you think’, so this is the kind of operational norm. But it’s tokenistic. So people with a learning disability […..] come into four categories between therapy and placation and at the far end you still have this manipulation, particularly with challenging behaviour, situations, secure settings …. I don’t see citizen control at all; I don’t even see what you could legitimately call delegated power. There is partnership, we experience it, but it’s flawed and it risks slippage into tokenism.’

However, some experienced self-advocates were more positive. Many felt they had nearly full control of their lives, as two veteran British self-advocates said.

‘Now? Definitely now in the top! When I was in the [care] home, back then, more down here, halfway through, therapy and manipulation. I felt I weren’t in control. And I was pushing them limits to get my control. Because I knew what I wanted and I knew what I wanted to do but it’s like how do I say it unless I’m doing something wrong?’ (Self-advocate 1)

‘I was down there in the past – no power – but now up to partnership and control. Jumped from manipulation and now I am in the green.’ (Self-advocate 2)

These views show that, even when involvement in DROs is limited, self-advocacy can be meaningful to individuals and, with support and opportunities, people with learning difficulties can feel empowered and in control of their lives.

A doctoral study of self-advocacy and the disabled people’s movement, Tizard Centre, University of Kent (working title, forthcoming in 2019)

Aims To explore the position of self-advocates within the disability movement today, including their involvement in disabled people’s organisations.

Methods This qualitative study in the UK and in Hungary involved 44 participants with learning disabilities or autistic spectrum disorders. Focus groups and interviews explored the views of self-advocates, parent advocates and other family members involved in advocacy, as well as professional advocates. For the analysis, thematic analysis was used to identify emerging themes. The study was approved by the Tizard Centre ethics committee.

Read the report There is a discussion of the emerging research findings in Petri G, Beadle-Brown J, Bradshaw J (2017) “More honoured in the breach than in the observance” – self-advocacy and human rights. Laws 6(4): 26. (open access)


Although self-advocacy can powerfully shape the lives of people with disabilities, the involvement of self-advocates in formal DPOs remains wanting.

Self and other advocates such as family members and professionals think more needs to be done to ensure ‘representative’ organisations are controlled or led by people they are representing.

Arnstein SR (1969) A ladder of citizen participation. Journal of the American Institute of Planners 35(4): 216-224

 Gabor Petri is a PhD candidate at the Tizard Centre, University of Kent