91ÖÆƬ³§

To cite this work: Phillips, S. and Scargill, K. (2025).  Funding Collaborative Disability Projects with Disabled People's Organisations. Disability Dialogues. 91ÖÆƬ³§: iHuman, University of 91ÖÆƬ³§. 

Sophie Phillips is a research associate on the Wellcome Anti Ableist Research Cultures Project. She is especially interested in the experiences of neurodivergent staff in Higher Education. 

Kelly Scargill is the 91ÖÆƬ³§ Voices Manager at Disability 91ÖÆƬ³§ Centre for Independent Living. They are an Autistic Adult using their lived experience and pioneering co-production work to challenge and change ableist structures in society.

Co-produced research projects, where university-based researchers and people from outside the university work together, are slowly becoming more common.  However there are few examples where calls for research by funders have been co-produced.  The Wellcome Anti-Ableist Research Cultures project, includes an internal funding call for any member of university staff or postgraduate research student to apply for up to £5000 funding for an 11 month research or innovation project. Projects had to be co-constructed with a Disabled People’s Organisation (DPO). We worked alongside 91ÖÆƬ³§ Voices to produce this call. 91ÖÆƬ³§ Voices is part of Disability 91ÖÆƬ³§, a DPO based in the 91ÖÆƬ³§ city centre. The 91ÖÆƬ³§ Voices project is led and run by Autistic adults and adults with Learning Disabilities, who advocate for positive change in disability issues. 

University staff and postgraduate researchers were given two routes to apply by: (1) submit a full research or innovation proposal with a DPO they had previous connections with, or (2) apply to be ‘match-made’ with a DPO, before working with them to submit a proposal. In this piece we briefly consider both the positives, tensions and the ethical challenges that arose from matching researchers and DPOs together, and provide recommendations for funders in the hopes that future collaborative research can occur. 

Responding to 91ÖÆƬ³§ Voices
91ÖÆƬ³§ Voices was presented with the research call first draft. Due to university logistics around payment timescales, they could not be approached earlier. On presentation they were keen to edit and add to it, to ensure their opinions were thought through. This included adding the option for researchers/staff and Disabled People’s Organisations (DPOs) to apply independently and be matched together to create a proposal. This meant that more work was required in terms of organisation, but equally this improved accessibility particularly for early career researchers who may not have such readily formulated connections with existing DPOs.

Navigating the wants of researchers and DPOs
It became apparent during the matchmaking process that both DPOs and researchers sometimes came to the process with different priorities. Researchers understandably will  have had their own ideas for research projects but these might not necessarily meet the research aspirations of DPOs. Other researchers come with very broad ideas of their area of research which are open to be guided by the skillsets and values of the DPO. Navigating these different priorities and interests is always a challenge when we are trying to promote more collaborative approaches to research.

Accessible nature of the research call
It was important that the research call did not just include staff on fixed term or open-ended academic contracts. We were keen to encourage applications from postgraduate research students and professional services staff. In order to increase accessibility we stated that support would be available throughout the research process. This ensured that staff were not discriminated against depending on their contract type or connections within the university. In addition, everybody was offered a video call/chat about the call prior to the deadlines. Whilst we knew this would not alleviate all disparity between different applicants, it meant that discussions could occur and there was an opportunity to ask individualised questions. It was evident that only postgraduate research students and academic staff applied to the call, which may mean that our call was not responsive to academic staff on fixed-term contracts nor to professional services colleagues. 

Payment and Intellectual Property
When approaching DPOs about potential research collaborations, some common themes were broached. Most notably questions were raised around the issues of payment and Intellectual Property (IP). These questions reflect traditional models of housing IP within the university. Questions were also raised around payment and we discussed with applicants the importance of properly remunerating DPOs in terms of their daily consultancy rates. One DPO that we spoke to highlighted that they had repeatedly given their time for free in the past but were now unable to do this due to the financial climate. Although there are some guidance documents with suggested payment amounts  to partner community research partners, across the research and fundings sectors, there is no generally agreed rate. This means that in every research collaboration, payment and monetary value has to be negotiated. 

Recommendations to Funders

• Incorporate the expertise of DPOs into the making and evaluating of all research and innovation funding calls.
• Offer support to academic and DPO applicants to reduce barriers to applying and increase accessibility.
• Start conversations early around ethical topics such as Intellectual Property. 

Conclusion
Overall, the process of match-making researchers and Disabled People’s Organisations has been fruitful, in collaboration with 91ÖÆƬ³§ Voices, leading to four collaborations to create full proposals for submission. It has enabled DPOs without established research links to start the process of building such and likewise for researchers to increase their connections, with support.