You can listen to this blog post here: https://open.spotify.com/episode/7fDxiHiB9lJXHXeYjFOiMR?si=8d1b101dd3334885
In June of 2019 we shared a blog post titled ‘Introducing us’ to launch our idea for One Step at A Time (OSAAT). In it we wrote about the isolation we felt with our experiences of disability and university, the importance of friendship, and our need to start conversations about it in the hope of making some change (you can read the full thing here). Now, four years on we are graduating from university, and OSAAT has morphed from an organisation of three into The LUNA Project, a registered charity with over sixty volunteers! So much has changed over the past four years and so we wanted to take the opportunity to reintroduce ourselves and share some of our personal and professional reflections.
It's not just us!
When we published our first blog it felt like we were sending it off into the void, written more for ourselves than because we thought it would reach anyone. In reality, it resonated with a lot of people who were having similar experiences as disabled young people. That feeling of ‘it's not just us’ has only grown over the past four years as we have met many, many people in situations with similarities to our own. The LUNA community (because that is what it is now!) is full of people one step behind us that we can share advice with, and one step ahead of us who we can look to for advice. This experience was unimaginable to us back in 2019 when we felt so alone in our experiences. Our fellow LUNA volunteers are brilliant, brilliant people who continually inspire us with their creativity and energy to make change. Getting to meet them, work with them, and share friendships with them is one of the best things to come out of LUNA.
Similarly, getting to work together has brought a whole new dimension to our friendship. Getting to sit in cafes and brainstorm and think up wild schemes to get us closer to the world we want to live in and then see them through together is such a privilege. Getting to grow together and cheer each other on as we speak at conferences, run workshops, and facilitate meetings is really special.
That feeling of ‘its not just us’ also extends to the world of people and organisations who are trying to make life easier for disabled young people, many of whom LUNA has now worked alongside. For example, hearing about Children Healths Scotland's Self Management Program, the work RCPCH and Us do, and the newly started PEEK program has been brilliant. It has filled us with hope that there is change happening and that we are just one of many organisations working hard to make life easier and more joyful for disabled children and young people.
It gets easier (and it doesn’t get easier)
So many of the things that were once unknown or a barrier are now second nature to us - a graphic in Canva? Easy. Arranging and facilitating a meeting for 40? No problem. Submitting a funding application? We can give it a good go. We have been on a huge learning curve and almost everything about running a charity on a week-to-week and year-to-year basis has gotten easier. A lot of the learning has been about how to make it work for the LUNA volunteers and ourselves. Small things, like recently Ross took over writing the minutes of the meetings they are at because it helps them focus better, make a huge difference. So many of these small decisions have contributed to a charity that runs in a way that is fun and accessible to be part of.
That being said, being part of an organisation that is changing and growing means we never quite get comfy. As well as the challenges we carry forward (we are still getting our head around finances!) we are constantly encountering new, unforeseen challenges. There are strong parallels with our experience of chronic illness. We had a steep learning curve in learning to live independently and do university with a disability, and now, just as this is getting easier and more normal for us, everything is about to change again bringing new challenges.
It is true for both running a charity and living with long term health conditions (alongside the usual challenges of adulting and university!) has not been easy. Yet doing it without each other would have been infinitely harder. As a trio we learnt lessons together, were able to laugh about everything from needing to try and find an accountant to verify our accounts in 72 hours, to spending birthdays in hospital. Things which would have been stressful and uncomfortable alone felt possible and just part and parcel for the journey together.
One Step At A Time
LUNA was absolutely built from One Step At a Time. We would never have sat down and thought we could (or that we should) set up a registered charity with sixty volunteers and ten professional advisors that speaks at conferences and runs workshops (and even gets paid for some of them!) and creates, prints, and distributes resources. All that stuff was done little by little by little by many different people.
This also rings true for us personally. When talking about writing this Beth laughed and said “God, if we had known what was in store for us healthwise over the next four years we would probably have just given up”. It is true that the past four years have been tricky, and there were many, many times when graduating university not only seemed impossible but also irrelevant because health stuff was so much bigger. We took it all one step at a time, one small part of a problem or one hour or one day at a time, always with company, and here we are. Whilst the name of OSAAT is long gone, it is a mantra that we have carried with us over the past four years and will take forward indefinitely. We are still a small charity, making small differences to the conversations around disability and young people. But this started with three friends, a notebook, a pen and a vision for what we wanted to change. From this, we know and we have the lived experience of what these small, tiny even, changes can do for our lives and the lives of those around us and I hope you, dear reader, take this forward with you.
So, here we are in August 2023 as a newly graduated historian (Ross), psychologist (Ally), and doctor (Beth). We no longer all live within walking distance of each other, and no longer have the dreamy flexibility that came with being students. However, amongst all these changes our commitment to LUNA remains constant and we couldn’t be more excited for what is to come with LUNA over the next few years. As always, we will be taking it one step at a time, together.
All good things,
Ross, Ally, and Beth X