When I grow up

Recently I’ve been exploring what I want to do for the rest of my life and how I want to it, it’s a bit of a ‘what do you want to be when you grow up’ type of journey, only I’m much more grown-up than my five-year-old self who pondered about being a firefighter. In defence of my five-year-old self, she had just done a safety day at school, visited a fire station and hadn’t yet learnt about my adult fear of heights (learnt mid panic attack on an aerial assault course of all places). However she had the gist of things right, I want to be a person that helps others, something I’ve set about achieving so far in everything I do and to develop expertise in something that could be admittedly niche- although unfortunately not expertise in physical strength my knowledge lies much more in inclusion.

Different to the plans laid out by a child and with thanks to the self-discovery that comes with collecting disability diagnoses in young adulthood, I have been carving a career through my passions and interests which have strengthened themselves in every action and thought I’ve had in work and volunteering.

Tricky and fulfilling

So far I’ve learnt that combining lived experience with learnt experience can be just as tricky as it is fulfilling. The things that we want to do aren’t made to be easy but it wouldn’t hurt if they were a little bit easier.

The tricky part happens at the intersection of being a member of both camps but without the power needed to implement change. I’ve already come to understand that this often happens in bureaucratic systems that clasp onto power structures and struggle with power-sharing. Power-sharing is meant to be democratic or meritocratic where all citizen’s value is elevated but often we, unfortunately, continue on in the autocratic structures demanded of us by institutions. To share power you have to build the system, not try to exist within it, nothing can be changed enough without some level of dismantling the bureaucratic processes that institutions need. Finally, I’ve also learnt that the only way I want to work is in this patch of discomfort, pushing change forward with people rather than for people. Whenever I’m comfortable that’s when I know that there is not enough challenge occurring and it is likely that learnt experience is being used to prevail over lived experience. That comfort for me often comes at the price of discomfort for someone else through their exclusion from the discussion I am partaking in whether intentional or not.

After all that, the struggle and strife of trying to work in a way that centres on collective lived experience, shared power and decision making there is the often inevitable fulfilment, not just from finishing something but by finishing it with so many others involved. I often joke that I work in a way that utilises shared decision making so I don’t have to make decisions alone but it isn’t completely true, it’s more of an acknowledgement that I’m not always best placed, powered or knowledgeable about all the consequences of decisions. I recognise that decisions create ripples and while I am often like a small child fascinated by the ripples (very sensory seeking autistic there), those ripples do impact people, so people should be involved in deciding the direction of their ripples. So I’ve learnt how to position my lived experience alongside that of others while also making use of what I have learnt while studying and working, I’m still navigating how to wear these ‘multiple hats’ but it is something I’m becoming more confident with.

Nudged to apply

I have been incredibly fortunate and privileged to be able to work in the ways that I want to and explore how to expand upon what I have learnt. Through this I’ve developed a breadth of inclusive practice, continuing this journey of education as I go. I’ve also been surrounded, much like penguins clingy to warmth, by a crowd of people, friends, acquaintances and colleagues who have continued to push me further, to reach for more and often just correct my spelling and grammar. In early January I started getting nudges to apply for something that could not have been a better fit for me, a project exploring inclusive involvement working with a Service User Led Organisation and researchers to see what the co-production and implementation of inclusion looks like in action. After much deliberation, chats and encouragement I applied, with that I put it to the back of my mind and didn’t think much of it, I had tried to pursue PhD before with what I felt was a strong application but it wasn’t something that found a place or funding.

A lesson here is to not discount yourself from the experience you’ve had in the past but to believe in the growth you’ve had up until now (a bit cheesy I’m aware, but most hindsight is), as it turns out my application was strong and I was invited to interview. Taking a break from academia and pursuing my enjoyment of research through research networks, participation and involvement have provided incredibly beneficial here, bolstering my application academically and providing a firm basis in theory, the sector and the work of others splashing about in inclusive approaches to co-production and involvement. Ever the nervous person and ready to diminish my achievements, interviews are not always easy for me, this interview was no different, the more I thought, read about and pictured this doctoral project the more invested I became, so I spoke quickly blending my cynicism with a love of the work I’ve achieved so far. It turns out that worked, there was no denying the passion I have for this area, and even without the good news I ended up receiving I would have continued to work within inclusive involvement in some way or another without this opportunity.

Announcement

That was a lot of words to say that I’ve been offered the chance to undertake the exact kind of research and way of working I spend most workdays speaking about as a PhD at King’s College London. The official title is an MPhil/ PhD in Health Research Studies exploring the wordy topic of “Sustaining meaningful user involvement in research, local government planning and policy-making: an ethnography of a national user-led initiative to support Disabled people and service users.”. The short version of that is that from October I will be undertaking a PhD exploring inclusive involvement with disabled people on a project alongside Shaping Our Lives and researchers at Kings (Prof Glenn Robert and Dr Oli Williams).

This is all happening thanks to two things, the first is funding and the second is (finally) the inclusion of involvement practice at the doctoral level. I am thankful to be awarded an ESRC studentship as part of the LISS DTP (London Interdisciplinary Social Science Doctoral Training Partnership) Collaborative Studentships (CASE) which bring together academics and non-academic partners working together, in this case Kings and Shaping our Lives. That is something that really shone about this project to me, by it’s design it isn’t just mine, it doesn’t hide away in academia, it has to be shared with and worked on by other disabled people. The second point of involvement being embedded in a project at doctoral level is not something I could have envisaged before this project (but is a growing trend across health and life sciences), as I had always seen doctoral students struggling with payment of participants let alone any involvement due to involvement not being pre-emptively built into budgets. From the outside perspective, as an often involved person, it can seem like involvement, particularly when done badly is a segregated add-on project rather than a thread that holds the whole research together, that’s something I want to push to change.

From October 2021 I am heading back to university to dive into a doctoral project that will bring together so many disabled voices and opinions and I’m excited to see what we build together. Let’s see what we come up with over the next three years.