We need to invest in the careers of researchers and policy makers with disability

Ellen Fraser-Barbour & Professor Sally Robinson

It doesn’t seem too much of an ambit claim to say we have reached a crossroads in terms of inclusive research practice. There are increasing expectations that people with disability will feature in research projects through co-researcher and lived experience positions, and to a limited extent, this is increasingly reflected in guidelines for grants and funding.

However, we are yet to see this expertise translate into opportunities that encourage significant investment in career development of disabled scholars and researchers and to building a ‘third wave’ of inclusive research where leadership is by disabled people, above and beyond our contribution to research practice (valuable as this is).

Recognising that personal accommodations are mostly issues flagging the need for systems change is a key piece of work for senior academics and policy makers. Taking up these change projects within our academies means working to influence the policy and practice contexts in which we all work. This opens the door wider for the next generation of disabled scholars and moves the inclusion project from being a matter of making room for a valued individual to making space for cultural change in our field.

The introduction of the National Disability Research Partnerships has many of us feeling optimistic about the future of disability research in Australia and the potential for cultural change in our field. As Dr Scott Avery noted in his editorial article in January “there is a pathway forming where the role and contributions of people with disability are visible in a newly defined way”.

As Scott Avery noted, people with disability have a long history of systematic and systemic exclusion, exploitation, violence and silencing. Many in the disability community feel that the experiences of people with disability are not safely being heard, and this has particular significance given the Disability Royal Commission. There are also issues with the weighting and time given to professionals, academics and others who speak ‘on behalf of’.

It is high time to address ableism at a national level in research. Often people with disability are the ones who must find their way to the “table” and take up the unpaid emotional labour involved in doing ‘lived experience’ work. Many who work in research and policy spaces cite the value of peer leadership and collaboration with people with disability however employment opportunities for people with disability are often insecure, short term and casualized ‘alongside’ those without disability who are more likely to be in long term secure positions. This is “nobody’s fault” and is just one of the many ways ableism exists at a structural level, reinforcing the message that people with disability are not as valued.

In order to do equitable, accessible and respectful research with true influence and usefulness to policy making, then we need to be prepared to tackle the question of ableism. It’s a difficult task, and one that involves frequent, difficult, complex, messy conversations. Tensions and structural need to be recognised, spelled out and discussed as part of doing quality research and policy making with and about the lives of people with disability. We have an opportunity at national, state and local level to challenge barriers and transform and lift our standards (both principles and practices).

At a systems levels there are challenges and costs when attempting to engage people with disability within the constraints of budgets and resources. There is a cost at an individual and community level for people with disability which remains unrecognised and rarely talked about among seniors and leaders within research and policy spaces. There is subsequent fatigue and distrust among the disability community when people with disability are repeatedly asked to consult, advise, and give input. Often what is heard in consultations is reframed to suit. Time, intellect and emotion invested in these consultations rarely results in accountability, action or progress and that in itself is wearying and incurs an emotional cost to people with disability and their families.

Policy makers and researchers have to operate within a range of systems, policies and structures which can make it tricky and resources are often stretched. A truth which needs to be noted. However there is a sense of solidarity and allyship when researchers and policy makers speak plainly of frustration and challenges they navigate. It is not always easy to challenge funders however those who are not afraid to spell out what isn’t working (rather than passively accepting) show great solidarity and at least communicate a sense of disquiet about the inequities and injustices that result. Conversation and recognitions matter a great deal.

It might also be something as simple as explaining firmly why blind research participants won’t be filing tiny printed taxi receipts. It might be something more complex like explaining why political winds should not supersede the ideas from a co-design process - why honouring that process would be in keeping with a co-design project’s funded aims. We may not always “win” when swaying the funders – but silence in response further entrenches a sense of cultural acceptance of ableism. Shared trouble shooting, debriefing and peer support are immense protective factors. People with disability should not be the lone voice of ‘but wait, this isn’t accessible’ or ‘wait, we’re making decisions without people with disability in the room’.

Conclusions

There has never been a more critical time in Australia to review, reflect and re-imagine how we collaborate with people with disability in research and policy spaces. There are also issues with the weighting and time given to professionals, academics and others who speak ‘on behalf of’ people with disability.

We are still at a point where people with disability are only ‘invited’ into research and policy and are not truly at the helm, in control, setting agendas, shaping outcomes. We need honest and frank discussions about what hinders true leadership by people with disability (from a cultural and systems perspective).

It’s time we invested in the next generation of scholars and policy makers – people who are building their careers about both scholarship and lived experience We need cultural change and opportunities to work with people with disability as leaders and colleagues in research and policy spaces. For this to happen, it needs people at multiple levels committed and willing to act.

Acknowledgement and thanks to Jen Hargraves for her insights and conversations which have also influenced this paper.

About the authors:

Ellen Fraser Barbour serves as a member of the NDRP working party. She is also a scholarly fellow & PhD Candidate at Flinders University. She identifies as disabled and has worked in a range of roles in research, policy and in the disability sector.

Sally Robinson is Professor of Disability and Community Inclusion at Flinders University. She does research with people with disability about safety and abuse prevention, quality in support relationships, and loneliness. She also identifies as disabled.

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