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OQ Dr Nicola Grove Tells Us About Her ‘Surviving Through Story’ Charity

Thursday 11 February 2021


OQ Dr Nicola Grove started her remarkable career as an English teacher before becoming a speech and language therapist. She works with children and adults who have severe communication difficulties, using sign language and gesture, voice output communication aids, and personal storytelling to support empowerment and inclusion.

Nicola has kindly shared with us the fascinating and incredibly valuable work of the charitable project she established during the current pandemic - 'Surviving Through Story'.


Throughout the past year, the media have been full of stories - of endurance, heroism, suffering and creativity. But there is one group of people whose voices are never heard directly. People with learning disabilities, and children with special needs and their families, have been disproportionately affected by the virus - as Harry Roche, Ambassador for Mencap, made clear in a letter to the Independent on February 2 seeking priority consideration for vaccination. This is deeply concerning - but what is also worrying is the way in which the media see people with learning disabilities only through a lens of victimhood, as though they are not individuals with lives of their own and contributions to make to the community effort.


For the last 40 years I have been working with both children with special needs and adults with learning disabilities, first as a speech and language therapist, later as the founder, director, then trustee of a charity - OpenStoryTellers. The charity emerged out of a funded project to explore whether people with learning disabilities could develop skills as community storytellers - you can see some of the triumphant results of nearly 20 years of work here.


Alongside this work, where the focus was on legends, folktales and history, I was also developing a programme to support the sharing of personal stories and experiences -storysharing.org.uk. The small anecdotes we tell each other (and ourselves) every day are essential to our well being, sense of identity and friendship. They also keep us going. In the first days of lockdown - remember those?- I was struck by how important it was to share small fragments - my shame at not realising I had to queue at the supermarket… the discomfort of steamed up glasses when mask wearing - the panic at running out of loo rolls… the struggles with zoom. However, when I checked to see what was happening with people with learning disabilities, these kinds of events were not represented at all. Instead, the resources were all information based - stories about washing your hands whilst singing happy birthday, or coping with PPE. Of course this information was, and is, essential - but it’s not what builds community and resilience.


Surviving through Story started with the help of two remarkable special needs teachers, Flo Hopwood and Katrina Arab. Together we created a Facebook site with space for stories and films to be uploaded. Thanks to a kind donation, we got a promotional advert - and then the Open University and the charity Generate came on board and funded our website. Surviving through story has just been commended by Guardian journalist Saba Salman. Our advisory group, including 8 self advocates with learning disabilities, meets regularly and the stories continue to roll in. What they show is the strength and resilience of this population, who have uncomplainingly accepted restrictions, volunteered their skills, continued working, supported each other, and learned how to manage technology to keep in touch. Currently we are campaigning about the vaccine, and organising online visits to collect more stories, which we hope will feature in some online events this summer.


Please do visit the website and read and watch the stories. If you have family or friends with special needs or learning disabilities, we would love to hear from you and from them.

When we come to building back better, once this nightmare is over, we must ensure that they are included, not just because of their needs, but because of the life lessons we can learn from them.

Dr Nicola Grove

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