For the last year I have been working on an evaluation for a client in London, England. The client is Trust for London, a grant-giving charity. I am helping to evaluate Strengthening Voices, Realising Rights, a pioneering initiative in which the Trust is trying to co-produce funding with grantees. I say ‘trying’ because it has proved extremely difficult to change the balance of power between grant-givers and grant recipients. Part of the reason for this difficulty is that the Trust decided to make Deaf and Disabled People’s Organisations the beneficiaries for the initiative.
What the Trust is trying to do is highly laudable, but it is also much harder than they anticipated. Deaf and Disabled People’s Organisations are small grass-roots organisations run by Disabled people; there are over 70 such organisations across London. They exist to help Disabled people in a range of ways: befriending and peer support, benefits and legal advice, housing and health support, information provision and volunteering opportunities, and other such services and activities. Each Deaf and Disabled People’s Organisation is unique because they respond to local needs and their staff and volunteers have a variety of skills. But they have some things in common: they are small charities responding to high levels of need, and they are vulnerable. This is partly because they are small, and small charities in the UK are vulnerable to the combination of short-term funding constraints and minimal staffing levels. It is also because they are run by Disabled people, who have lower skill levels overall than the able-bodied population due to the discrimination they face, which means it can be more difficult to recruit Disabled people.
At this point, I should say I am a Disabled woman living with fibromyalgia (fibro), a fluctuating condition. On bad days, I get less done, sometimes very little. This didn’t happen in the same way before I had fibro. Of course everyone is more productive some days than others, but fibro can impair my cognitive abilities at times, which is a real drawback when you think for a living. So I am glad to be working on this evaluation. I can see exactly why it is an excellent idea for Deaf and Disabled People’s Organisations to be run by Disabled people. I can also see why it is problematic. Vacancies are hard to fill. Deaf and Disabled People’s Organisations are often very small, with just a few staff, so a vacant post has a big impact on the rest of the staff. Then, when a vacancy is filled, if the postholder needs extra funding for equipment or assistance to enable them to work, that can take months to arrange, during which time they may not be able to do much actual work. And there are the more common problems some Disabled people face: changes of medication which leave people struggling to function as they adjust to new side-effects, medical appointments during working hours, increased vulnerability to viral and bacterial infections, and so on. Plus this initiative coincided with the COVID-19 pandemic which had a disproportionately negative impact on Disabled people. All of this means that every Deaf and Disabled People’s Organisation is incredibly stretched, which in turn means that Deaf and Disabled people’s voices are seldom heard.
Yet Disabled people are best placed to support and advocate for other Disabled people. In these times, can you imagine an organisation promoting women’s rights being run by men? Or an organisation promoting the rights of Black or Indigenous people being run by white people or colonisers? Yet organisations promoting the rights of Disabled people are routinely run by able-bodied people who, however well-intentioned and well-informed, don’t have the lived experience which is essential for truly effective advocacy. Research shows that Deaf and Disabled people can be an asset in the workplace, and the experience of Deaf and Disabled People’s Organisations across London shows that with the right support and management Deaf and Disabled people can be extremely effective advocates for other Deaf and Disabled people.
I first met with representatives of the Strengthening Voices, Realising Rights-funded Deaf and Disabled People’s Organisations in February 2021. One of the things I learned was that these organisations struggle to articulate their value to funders and partner agencies. I immediately thought a short comic could help. I had already analysed some data demonstrating their value and had initial findings I thought I could use to weave a story. Luckily for me, a representative of one of the organisations, and two people from Inclusion London which works to support Deaf and Disabled People’s Organisations, were willing to help me get the facts right. Another stroke of luck was finding Disabled comic artist Julian Gray who was willing and able to work with me on the comic, and proved to be an excellent collaborator. The finished comic was presented to the Deaf and Disabled People’s Organisations in early November 2021 and presented at the annual conference of the Social Research Association later that month. And now it is freely available online for all to read or download [18.5 Mb PDF].
The feedback has been very positive. Here are a couple of examples:
“The narrative and comic illustrations completely hooked me, much more so than a report or presentation would. It feels like a really accessible way to disseminate your research to a wide range of people.”
“This is such an interesting and novel (to me) way of presenting research findings! Will definitely be considering this in the future as the whole presentation of narrative and images really stuck with me.”
I should probably confess at this point that I am a lifelong lover of comics and am thoroughly biased in favour of using comics for these kinds of communication. But I am also a scholar, and I have reviewed research demonstrating that comics help people to understand and remember their contents. As a specialist in creative research methods, I advocate using methods of presenting research findings that help our audiences to understand and remember the messages we want to convey.
Helen Kara FAcSS has been an independent researcher since 1999 and an independent scholar since 2011.
She is the author of Creative Research Methods: A Practical Guide (Policy Press, 2nd edn 2020) and Research Ethics In The Real World: Euro-Western and Indigenous Perspectives (Policy Press, 2018). Helen tweets from @DrHelenKara. Her ORCID is: 0000-0001-7348-0963.
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