Why are disabled people with learning difficulties being prevented from leading campaigns, projects and initiatives?

Abstract

I am a disabled person with learning difficulties. This article describes my perspective on the involvement of disabled people in campaigns, projects and initiatives. I have noticed a gradual change, where LD people are less likely to be in decision-making roles, and more likely to be engaged in subordinate roles such as consultant, research participant, and co-producer of resources. I argue that this situation should be challenged, and that LD people should be supported to lead these activities in a way that contributes to their emancipation.

Keywords:

• co-production
• disability commons
• emancipatory research
• leadership

Introduction

I am a disabled person with learning difficulties – former Policy and Campaigns co-ordinator and lead consultant for People First – a UK self-advocacy organisation run and controlled by people with learning difficulties. I have been involved in leading and supporting a whole range of disabled people led campaigns that include the introduction of the Disability Discrimination Act (replaced by the Equality Act), Community Care (Direct Payments) legislation, the UN Convention Rights of Persons with Disabilities, and the Education Act which included a right to mainstream education. I have decided to write this opinion piece as a conversation starter.

When I first began to get involved in disabled people’s rights campaign work, many parents and academics would have acknowledged that their experiences are different from those of us who are disabled. Parents and allies can never experience discrimination, exclusion, segregation, institutionalisation first hand like us as disabled people. Acknowledging that there is a difference, parents and allies would have come to the disabled people’s movement for support on what to do next, in exploring their role in supporting disabled people’s rights campaign work led by us.

Whilst working with the Alliance for Inclusive Education and People First, we had disabled children engaged in our campaign work in a variety of ways. It also gave us the opportunity to work with families as allies (toolkits and resources are available on the Alliance for Inclusive Education website – www.allfie.org.uk). Whilst I worked for IPSEA (the Independent Provider of Special Education Advice), I worked with families to enable their disabled children to have a strong voice, and have their wishes heard throughout tribunal hearings. It is here where well-established relationships are forged between parents of disabled children with learning difficulties and colleagues.

Over the past decade I have noticed a big shift – many parents are now working with the ‘establishment’ such as academic institutions, the legal and public sector, or well-established 3^rd sector organisations. Such work involves inequality of power where disabled people with learning difficulties are ‘consulted with’, and viewed as research subjects, clients, service-users or in other similar subordinate roles. LD people are rarely if at all viewed as leaders in our destiny, inviting practitioners of the establishment to work with us as facilitators rather than gate keepers. I believe that parents and practitioners have internalised the power differentiation, resulting in campaigns, projects and initiatives led by us being pushed out.

Covid-19 campaign work

Recently, I have noticed increasingly that campaigns, projects and initiatives are no longer being led by disabled people with learning difficulties and their speaking up groups. Now everything seems to be run by parent activists with their professional colleagues. The Coronavirus Act 2020 has strengthened the alliances between parents of disabled people and their professional allies. Such campaigns, projects and initiatives have tended to involve a range of activities without any real engagement with disabled people with learning difficulties and their speaking up groups.

Disability commons

Parents of disabled children, along with their colleagues who work for the establishment, have justified their roles within LD people’s campaigns, projects and initiatives through joint humanity, central in the sharing of ‘disability commons’ (Runswick-Cole and Goodley 2018). Therefore, interdependency between parents of disabled children, disabled people, academics, lawyers and allies, is taken for granted whilst undertaking campaigns, projects and initiatives with the aim of achieving change.

Undefined concepts

It is my opinion that too many parent activists and professional colleagues working for the establishment, including universities, public sector, big service providers and charities, are using all sorts of concepts to justify their role in disability rights work without any accountability framework. Co-establishment, co-production, disability commons, partnerships and working together are amongst a broad range of concepts used to illustrate institutional practice whilst working with us during campaigns, projects and initiatives. When one asks for examples of work that illustrates partnership, projects involving co-production, working together and other similar representations are offered. When one wants to open up the discussion about such ideas on various social media platforms, parent activists and practitioner moderators will shut down debate very quickly. Any challenge to such concepts used by institutions, public sector and big charities driving practitioners’ and parent activists’ agendas and priorities about us, has led to us being thrown out of virtual discussion groups. Leaving such important concepts undefined means that the practitioners and parent activists claim they are practicing them without any critical reflection, thereby hiding behind undefined concepts in order to maintain the status quo – and not challenging the establishment. I argue that there has yet to be any attempt to be transparent about what such important concepts are and whether their claims reflect reality.

When asked about their practices of co-production, working together, and similar concepts, practitioners just get defensive – how dare I question their integrity when asking for an explanation of their working relationships with us and querying such illusive concepts? Over recent times I have noticed that practice rarely reflects theory. Some of my observations and experiences are as follows:

• Various campaigns are set up without any involvement from LD people and their speaking up groups right from the start. Strategies, key messages and social media publicity are aimed at parents and their colleagues. Because there is no commitment to engage with us, there is no commitment to make any resources in easy read right from the start. It’s only when a project or campaign is in place that the practitioners will engage with us, usually only providing us with prescribed methods of participation that still keeps the control within the same hands. One usual method is merely the submission of art work. We are never part of the campaign strategy, or involved in a broad range of activities that make the difference, such as being a court claimant, meeting with and drafting correspondence to ministers and civil servants, writing petitions, being media spokespersons and alike. Furthermore, any easy read resources become the responsibility of LD people and their speaking up groups despite many practitioners having the resources to do the job themselves.

• Research projects are usually controlled by academia. Academics will decide on areas of research, methods used, take control over the analysis and make recommendations. Engagement of local speaking up groups is usually restricted to adapting research project information to easy read, being research subjects themselves, or as part of some kind of ‘advisory’ committee. LD People are rarely involved in the influential aspects of the research such as choosing and developing the discourse and narrative, performing analysis and making the recommendations. Furthermore, the named credits often only go to the academics in a way that strengthens their platforms.

• Projects and initiatives are usually developed by big organisations led by non-disabled people, that have the control over funding, management and outcomes. These projects’ co-ordinators will manage the engagement of LD people, including the level of participation, the schemes of work, what they can and cannot be involved in, and alike.

To summarise, it is my opinion that when practitioners say they are co-producing or doing partnership working, it actually means on their terms. It is the establishment’s practitioners that dictate how we must work with them, which is usually in a subordinate role. This is not helped when people involved, including parent activists, have upheld the norms and values of their occupations and establishments without questioning the negative impact they will have upon the leadership and full emancipation of LD people in campaign and project work. The premise is based on the assumption that we are all interdependent on each other. No one is questioning to what extent this system is forcing us to depend on whatever role or stake they want to give to us in any piece of work. Rarely are we involved in defining the terms of the co-production and partnership working agreements. We are not involved in creating the ideas and strategies before they go live on social media or submitted to a grant funding organisation, and therefore we miss out on the roles given to various named individuals and organisations. Once those roles have been allocated it becomes harder to challenge them, particularly when relegated to roles that come without any real influence to make change happen.

Why does this matter?

Many LD consultants and speaking up groups who in the past would have received funding to lead and undertake their own campaigns, projects and initiatives are not getting funded at all. This is not about austerity as its very clear that there is funding out there, plenty of it. I argue that funding has been steadily moved from speaking up groups and LD consultants to the establishment’s institutional practitioners and parent activists. These practitioners have jumped onto a real opportunity for themselves when the potential to work with us has been there. After all, the establishment practitioners are not going to say blatantly that they are going to lead campaigns, projects and initiatives, as they will be challenged by us. So in order to ‘lead’ covertly, these practitioners will claim that we are working together, co-producing or engaging in partnership, in order to disguise where the power lies. Muting challenges to claims of interdependency works to retain inequality of access to resources, political pressure, funding networks, and other avenues of influence. Such relationships between establishment’s practitioners and LD people is one of subordination rather than equality.

I argue that what is never spoken about is LD people’s emancipation and leadership. Questions should be asked about who should be leading a particular campaign, project or initiative – how can establishment’s practitioners and parent activists support us to take the lead in making change happen for ourselves and everyone else? Surely, it should be LD people and their speaking up groups who choose who we want to work with rather than vice versa.

Conclusion

Increasingly we are seeing the establishment that includes big research institutions, big national learning disability organisations and parent activists coming together to undertake work about people with learning disabilities. It seems that these practitioners have chosen to accept the status quo rather than challenging the inequality of power between themselves and us. It is becoming more the norm for the establishment’s practitioners to engage with parents of disabled people, as they often share similar values and positions – the ‘disability commons’. What we need to do is challenge the role LD people have now got in campaigns, initiatives and projects. We need to move from ideas about working together, to supporting LD people’s leadership, which leads to full emancipation. After all, successful human rights struggles are usually led by the marginalised group of people. Campaign groups run by women, LGBT people, Black people, and even gig economy collectives have all run successful campaigns, projects and initiatives which have led to change and stronger rights for themselves. This cannot be said about recent work for LD people, where the main beneficiaries have been parents and their establishment’s practitioner colleagues, alongside their institutions. For this to change, LD people just like any group marginalised by society, must be supported to not participate on the establishment’s terms, but to take the reins and lead. Various campaigns, initiatives and projects do need broader support from the wider community, however, defining the learning disability commons must be led by LD people and their speaking up groups. I argue that it is possible for the agenda to be driven by people with learning difficulties in a meaningful and progressive way.

By Simone Aspis (Changing Perspectives Director)

[email protected]

www.simoneaspis.co.uk

Please see an easy-read version of this article here: Disabled People’s Leadership – Dr Rebecca Fish (https://drrebeccafish.wordpress.com/2021/03/03/blog/)

Disclosure statement

No potential conflict of interest was reported by the author.