The Grace Eyre Foundation, founded in 1913 as the Guardianship Society, was unique for its time.
In response to widespread institutionalisation following the 1913 Mental Deficiency Act, its founder, Grace Eyre Woodhead (1864-1936) pioneered a model of community based “guardianship”, providing homes for adults and children with learning disabilities in Brighton and rural Sussex.
This gradually evolved into a shared lives service – the oldest and longest running in the country. Shared lives involves paid carers sharing their homes and lives with people who need support to enable them to lead an independent life.
The foundation received funding from the Heritage Lottery Fund in 2019 to enable people with learning disabilities to explore their own history, share their life stories, learn heritage skills and help to create a digital oral history collection.
The Sharing Our Voices project was very much affected by the two years of Covid restrictions. Nevertheless, with flexibility, good will and reliable internet access, we were able to continue and involve an energetic group of young people in the Grace Eyre friendship group.
History and reflection on change
During the project, we learned not only more about our history but also how many issues still resonate today.
We saw how historical learning can be a stimulus to people reflecting on their own lives. What has changed – and, crucially, what has not changed enough?
Our online training with the friendship group involved learning about Grace Eyre and her ideas and from the life stories of people with learning disabilities in the past.
For example Albert (not his real name), born in 1932, was categorised as “feeble-minded” and spent his childhood in institutions and children’s homes.
is abilities were often underestimated but living in the community with a carer changed his life. With support, he was able to stay in touch with his family and hold down a job.
The past puts the present in context, says Jackie Reeve
As a project worker, it was exciting to watch as younger people learnt about the past and used that learning to put their own experiences in context. Sharing people’s life stories during training sessions provoked discussion about what has changed and what feels familiar – particularly regarding how people are treated and dismissed. One young woman said: “My best friend is really bright and really clever but people can make her feel really little sometimes. “Even nowadays, people still aren’t given a chance to be who they want to be. They still label you as somebody with a disability, which is wrong.”
The young people identified with the lack of control and respect people such as Albert experienced and shared their own experiences, demonstrating that many of these issues persist today.
Supporting people to explore their own history prompted some to name and campaign for rights. Learning how earlier generations lacked control over their lives, including choice of how and where they lived, showed how much had changed – and that more change was needed.
One participant said the project materials “will be such a great resource to support people’s understanding about where people with learning disabilities came from and where we’re heading in the future and what we can do to change that”.
Talking about Grace Eyre’s life was a prompt for these discussions, particularly where her own words were used to reflect on her work and the times she lived in.
When talking about past limits on opportunities, many participants related these directly to their own experience.
From several life stories we recorded, it became clear that a priority had been to find people work to help them to be useful and economically productive. The Guardianship Society would negotiate jobs with local employers and people would be sent there to work – with very little choice over this.
In the early years, that might have meant young women going into service and young men being placed on Guardianship-owned farms to learn agricultural skills. Later work included cleaning and jobs with laundries, local biscuit factories and bakeries.
Project participants were particularly struck by descriptions of the farms run by the Guardianship in the 1920s-1950s.
Eyre was proud of the two farms, believing they demonstrated that people could be self-supporting and productive: “It is now four years since the purchase of the first farm, and I think the proposition that… children can become self-supporting is proven beyond contention” (correspondence, circa 1927).
However, we know from a woman who grew up on one of those farms in the 1930s that life was far from joyful for those lads. She says they worked hard, had little fun and ate separately from the family. She remembered her grandfather shouting at them to work harder (https://sharingourvoices.org/story/gillians-story).
The struggle to find not just employment but work people enjoy and find fulfilling is still very much an issue, and people chose to focus on this theme when making a history film towards the end of the project. The film replaced the original plan to perform a play, which was not possible during lockdown.
The film, Alex (view it at https://vimeo.com/595512042), explores issues around employment and the struggle to make your own choices. Directed by Justin Spray, it was launched in December 2021 as part of Grace Eyre’s ReThink Disability Campaign and is now being shown at various film festivals in the UK and overseas.
A key issue the project highlighted was the extent to which people are still experiencing some historical limitations in shared lives arrangements.
We found some carers were gatekeeping and preventing people from volunteering with the project. They would not take up the offer of IT help if that was a barrier.
This was complicated by the pandemic. People vulnerable for health reasons had their options limited even more. Project workers talked with people who wanted to join the project as things eased, but some were prevented because of caution on the part of carers or as others in their shared home were vulnerable.
There is a clear challenge to Grace Eyre Foundation here to ensure that carers understand their role clearly – to support people to be more independent, try new things, meet friends, develop relationships and express themselves freely.
We have found this has been a theme through the history of the Guardianship Society and the Grace Eyre Foundation, as the organisation has to constantly reinvigorate the shared lives model to ensure carers are supporting people towards greater independence.
Does training make clear to people what one is committing to when one becomes a carer? When one no longer needs a gatekeeper or a gatekeeper only in some things, is support present in that change for both those with learning disabilities and carers?
The struggles and questions around acknowledging independence are, in short, an experience and discussion that is still ongoing with Grace Eyre and, indeed, within society.
We are glad we continued the Sharing Our Voices activities during the pandemic and were able to engage people with learning disabilities to explore their histories, both personal and more generally.
The project has inspired us to reflect on our own practice and values and to look at how we use life story work to improve the quality of care by enabling people to tell their stories and thereby articulate their needs.
For oral history interviews, Grace Eyre’s story, participants’ blog posts and more, see https://sharingourvoices.org/
Grace Eyre Foundation: https://www.grace-eyre.org/
Nathaniel Lawford is the inclusion and project director at the Grace Eyre Foundation and was a participant in the Sharing Our Voices project
Jackie Reeve was director of the Sharing Our Voices Project and works for the Grace Eyre Foundation
Nathaniel Lawford reflects on self-reliance, a fulfilling life and Grace Eyre’s history
As a young disabled person myself, it seems that many people lack understanding that a person with learning disabilities is still a person and thus has the right, and may well have the capacity, for growing in independence and self-reliance within their lives.
From my understanding in my new role at Grace Eyre, Grace Eyre herself seemed to have struggled to appreciate the growth of maturity given the loss of the sometimes-parental role and bond that is especially possible between those living with/supporting 24 hours a day and those receiving the support.
So Grace Eyre (while celebrating the rights of persons with learning disabilities to be valued and a have a fulfilling life) seemingly envisaged a strict limit to where and in what respects they could be fulfilled with their lives.
For example, people were often sent to farms involving a very set pattern of activities with little opportunity for growth beyond the assigned tasks.
Grace Eyre said:“I tell you, if you give a boy a man-sized job, he performs it manfully. At Tubwell Farm, they have grown shoulders, all of them. But I now realise more than ever that commitment to these children must be lifelong.”
This comment could mean that Grace Eyre would never value those coming into the organisation, which at this time was often at a young age, or it could be seen as suggesting that in Grace Eyre’s view, persons with learning disabilities would ever remain children, and thus in her eyes lack significant capacity of independence of agency over their own lives and how they were fulfilled.
How much harder then must it be for those who have not just had significant contact with those they support but also live with those they support in cases where, at least to some extent, a change in the support needs of the person occurs.
