Joanna Grace describes how being acknowledged as a leader can open the door for many others to follow.
In common with many of the people who have been awarded a place on the Dimensions’ Leaders’ List I have never really considered myself a leader. I work for myself and as an autistic person I have always struggled with being a part of a team, a part of a group. Most of my days are spent on my own on my laptop, working at my standing desk. I think of leadership like ‘follow-my-leader’, with a leader at the front of a line and the followers following on behind. The only possible things behind me are the cat and the dog, both of whom would be very surprised to set foot on my treadmill and follow after me.
Who could I possibly be leading?
But I was, of course, honoured to have been recognised in Dimensions Leaders’ List 2019, with this year’s winners soon to be announced.
My first experience of the Leaders’ List was being awarded a place for Advocacy, Media and Policy, in recognition of my contribution to the creation of the Core and Essential Service Standards for Supporting People with Profound and Multiple Learning Disabilities. The Standards are an advocacy document, a tool for those of us who are seeking to raise the bar with regards to what best practice care provision looks like for people with profound and multiple learning disabilities.
Since setting up The Sensory Projects nearly a decade ago I have had some amazing opportunities. I’ve done a TEDx talk, and had eight books published. I have got to work with some of my heroes, I’ve met Olympians, Paralympians and even a couple of celebrities here and there. I’ve presented at conferences globally. And the projects themselves have far exceeded the wildest dreams I had for them starting out.
Against all of this The Core and Essential Service Standards for Supporting People with Profound and Multiple Learning Disabilities, though they might not sound very exciting, are easily the best thing I have been a part of. I was thrilled that the Leaders’ List recognised the value in their creation. You can download them for free from TheSensoryProjects.co.uk/resources/PMLD-service-standards.
But being on the List was only the start for me. Dimensions curate the list to recognise the work of people with learning disabilities and autism who lead in so many ways. I have nominated people to be on the list, and was thrilled when my nominee Rosa was awarded a place on the Oliver McGowan award for Sports, Arts and Entertainment. Rosa has profound and multiple learning disabilities, she has a degenerative condition and is likely to lead a foreshortened life. She does not use language to communicate. She can direct her eyes to indicate yes or no in some situations but overall her access to communication is very limited, yet I know her to be a leader!
Some people might wonder how someone like Rosa could lead, but the wonderful thing about the Dimensions Leaders’ List is how it recognises all forms of leadership. Rosa led the way for people with sensory differences to go to the circus.
You can watch a very short film about Rosa’s work here circus-starr.org.uk/sensorystory. Her bravery, her engagement, her sensory perceptions, all informed and paved the way for other differently abled people to access the circus and have a fun time together with their families.
Last year my involvement with the list deepened again, from someone on it, to someone nominating people for it, to a judge.
Would I be a judge? Dimensions asked. Of course, I said yes. I had in no way anticipated what it would involve! I was sent the stories of people with learning disabilities and autism who had all shown leadership in some regard. It was the year COVID hit and many had shown leadership in the face of the virus. It is at this point that adjectives really let you down, words like inspirational really don’t scratch the surface of how impressive these stories were. How noble, and brave, how incredibly good, and selfless and kind people can be.
The awfulness of being a judge was that I had to rate so many amazing stories. How on earth can you say whose leadership is best? I developed ever more complicated systems of scoring, and watched with increased interest shows like Bake Off where judging is shown. Ultimately what I can tell you from being a judge is just how valuable being nominated for the list is, whether you get on it or not. Because I can hand on heart honestly say that every one of the stories I read was worthy of a place.
The pay off for the hard work of judging was to get to present the awards. I dressed up in all my finery last year and I was very VERY shocked to discover that my co-host for the evening was BBC’s Ken Bruce. I know that the nominees were excited to see us, but not half so excited as I was to see them. I recognised them from the stories I had read and the pictures I had seen as they popped up on that Zoom screen with their families. I cannot wait to see who is on the Leaders’ List this year. I thoroughly encourage you to explore the profiles of those who have been awarded a place so far and to nominate people you know with learning disabilities and autism who lead, remembering that the list honours a magnificent diversity of leadership.
For more information on the Leaders’ List 2021, visit the Dimensions website at dimensions-uk.org/get-involved/campaigns/learning-disability-autism-leaders-list-2021.
Dimensions provides evidence-based, outcomes-focused support for people with learning disabilities, autism and complex needs. We help people be actively involved in their communities.
We are one of the largest not-for-profit support providers in the UK. We currently support around 3,500 people and their families throughout England and Wales with help from our 7,000 members of staff.
We have been providing a range of support services to adults of all ages, including those with complex needs or behaviour that may challenge those around them, for over 40 years.
We are proud to be a not-for-profit organisation, not here for commercial gain. This means we’re able to invest all our efforts and resources into the important things – namely helping the people we support lead happy and fulfilled