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Reflecting on a decade

Campaigning

Clare Lucas Former charity campaigner at Mencap and MDUK Posted 5 years ago

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CharityConnect: Reflecting on a decade
This September will mark my first decade within the sector. At the end of last year, the lovely team at CharityConnect asked me to attend an event for people new to the sector or wanting to break into it to speak about my career- a lovely honour. Around the same time, I was also asked to take part in CharityJobs “9 to alive” series talking about life as a charity campaigner. Both experiences led me to look back at my career and it struck me how rare it is (aside from the dreaded period of applying for jobs!) that you get to talk about your career and meaningfully reflect on how you got to where you are now. It felt like a bit of a treat to have the excuse to give myself time to look back at how I got here and the things I have learnt along the way. The lovely Aggie suggested I do a post to share my career journey, so here goes… 
My journey into campaigning...
I don’t know about you but growing up I was totally unaware of the myriad of opportunities available within the charity sector. When I thought of charities I mainly thought of fundraising; people shaking buckets, approaching you in high-vis vests armed with clipboards or the big events like Red Nose Day and Children in Need. As such, “campaigning” was not a career I knew existed let alone aspired to as a child (when will they introduce the “Charity worker” family in Happy Families?!). 
I was always interested in the humanities and social sciences subjects at school. History, sociology and psychology fascinated me. This spurred me on to study social sciences at University which I thoroughly enjoyed but when the end of the three years came I found myself rudderless and with no idea what I wanted to do. There was no set path for me to follow. I moved back home to Swansea and after an intervention from my parents I ended up getting a job as a support worker for people with learning disabilities, autism and challenging behaviour, alongside some volunteering work. It was a really eye opening year for me and whilst I found the work itself very rewarding I also found it hugely frustrating. I could see how a lack of support from the Government and negative attitudes within society were placing massive barriers in the lives of the people I was supporting and I felt utterly powerless to do anything about it within my role. 
So, I turned back to education to try and find the answers and did a postgrad course in International Human Rights. Looking back now I realise that I went from being deeply connected to the realities of life to an idealistic bubble where I would write essays on issues instead of tackling them. It was a lunch with a family friend that changed things. I was making some impassioned speech about the latest topic of my studies when the friend stopped me and asked a question that would set me on a new course; “Have you ever considered being a lobbyist? I think you would be good at it.” Those words set me on a course of discovery into the world of lobbying and campaigning which eventually led to me finding my place within the world of work. 
Climbing “the ladder”...
Following the lunchtime pep talk I threw myself into looking at lobbying and campaigning roles. This is when I discovered that charity campaigning was “a thing” and set my mind on trying to find a job. I made lists of the organisations I was interested in and looked at what roles were out there. This eventually led me to my first role at Mencap as a part-time Campaigns Support Officer, a role I was only able to afford to do as my parents could support me at first, one of the many things they have done for me for which I will eternally be grateful. After a month or so I took on additional responsibilities as a colleagues PA to bring myself up to full-time (and self sufficiency- hoorah!). After a few years I was successful in getting a promotion to be a full-time Campaigns and Policy Officer, then Activism Manager a year later. After 7 years it came time to move to pastures new and I joined Muscular Dystrophy UK as Campaigns and Engagement Manager and am now Head of Policy and Campaigns. 
On the surface it can seem like a natural progression but it’s not always been a straightforward journey. Sometimes changes in my role have come about due to restructures which have been hugely painful and unsettling. I will always remember one restructure where it was decided that the Campaigns and Policy functions of the charity were going to be divided. At the time, this was mind boggling to me as I had always seen myself as both because that’s what my role had been. However, stepping back and discussing with colleagues, I realised my natural preference was for the campaigning side of things and what, at first, felt like being ripped in two actually became a process of self-realisation and led to one of the happiest periods of my working life.  
There have also been times where I have gone for internal promotions or external jobs I felt I was perfect for at other organisations and faced rejection due to not having the specific skills/experience they wanted, the role not being what I’d thought it was or just not being the best person on that day (and that’s if you get any feedback...). It can be soul destroying and make you question your worth. It can be hard to pick myself up again. However, much like campaigning, sometimes you have to persevere to get the win. 
Top campaigning moments...
At the event I was asked to reflect on my top campaigning moment. At the time I focussed on the Changing Places toilet campaign as it has had some amazing wins over the last year including two pots of £2 million from the Government to get Changing Places toilets installed at hospitals and service stations and a much awaited (and needed) Government consultation which could see these vital toilets becomes mandatory in large public buildings. However, there are three other top moments I would like to share here… 
  1. Bring Josh Home- this was a campaign we supported which was led by a parent, the brilliant Phill Wills, who was trying to get his son, Josh, moved back to Cornwall from an assessment and treatment unit in Birmingham, 260 miles away from home. His story struck a chord with people. Within 48 hours of launching his petition it had 10,000 signatures and Phill had the attention of Kernow CCG. The petition went on to gain national media attention and almost 250,000 supporters. Most importantly, it led to victory and Josh was moved back to Cornwall where he continues to flourish. Sadly, Josh’s story was not an isolated case but threw a spotlight on to a wider issue of children and young adults with autism and learning disabilities being sent far away from home. Phill has continued campaigning so that other families can also be reunited. Whenever I need a reminder about the power of campaigning I picture Josh.   
  2. Hear my voice- we set out to provide a platform for people with a learning disability and their families to be heard ahead of the 2015 General Election. We wanted to draw attention to some of the big issues impacting people with a learning disability by highlighting individual stories and also give our supporters the freedom to share their own messages with their local candidates (from benefits to bins!). Over 1000 people sent personal messages to their candidates and asked a simple but important question- “are you listening?” 832 candidates pledged their support in response, 151 of whom went on to be elected as MP’s. It was one of the most positive campaigns I have been involved with and solidified my belief in the importance of handing over the organisational microphone to supporters. The campaign laid the groundwork to continue conversations with MPs that would drive change for people with a learning disability. That work continues. 
  3. Access to Spinraza- most recently, I was involved in a campaign which secured access to the first treatment for people with Spinal Muscular Atrophy (SMA). For those that don’t know about SMA it results in the loss of motor neurons and progressive muscle wasting. Untreated, it is the leading genetic cause of death in infants. Spinraza was the first treatment for people living with SMA and had been shown to help people reach milestones they never would have achieved without treatment. For three years, Muscular Dystrophy UK worked with other SMA charities, clinicians, parliamentarians and the SMA community to fight for Spinraza to be approved on the NHS; three years is a long time to wait and fight if you are living with a progressive condition. In July 2019, we finally got the news that an access agreement had been reached. Since then I have had the pleasure of hearing from families about the life-changing impact the treatment is having for them. But, the fight isn’t over. There are eligibility restrictions and capacity issues at centres meaning that are still some people with SMA who are unable to access treatment. The fight goes on...
It’s not all about winning...
Wins are great when you get them, but they don’t always happen. For me, there are three important things to remember if you embark on campaigning as a career; 
  • Big issues are not easy to win but it doesn’t mean you shouldn’t try
Something you may have noticed from all the examples above is that each win comes with a “but there is more work to be done.” The reason campaigning exists is to tackle difficult problems in the world that are hard to solve. If a protest or petition was all it took to “fix” things we would be living in a very different society (and I would be on the hunt for a new job). Campaigning is often a long game and victories, big or small, can take years to achieve. It is important to identify what success looks like but also what progress looks like. You need to celebrate the little wins to give you the drive to get to the big ones. Working in campaigning is a bit like doing a marathon as a relay- you may not be the one who gets to pass the finish line but you still carried the baton part of the way. 
  • Remember to look after yourself
Campaigning is all about hope but there can be times where it feels hopeless. You are often at the coal face. You are trying to create change and when a fight is lost or derailed you are not only dealing with your own personal disappointment but often having to deliver that disappoint to those you were fighting for. Those who will be personally impacted by that loss. The messenger of despair. I have had times where it has all felt too much and I have contemplated jacking it all in to become a dog walker (I still get those moments). Times where I have just wanted to scream or cry until I have nothing left to give. It’s tough.
As well as handling the losses or setbacks you can also come up against criticism and the occasional trolls. It can be really hard to take, especially when you are pouring yourself into the issue and believe that you are doing it for all the right reasons. You need to equip yourself with tools and surround yourself with people that can help you bounce back at these times. You need to be able to identify when you are struggling and know how to ask for help. Above all, you need to be kind to yourself and remember that you are doing the best you can. Most of the time that will be enough and can lead to real change. When it doesn’t, you need to be able to give yourself the space you need to recharge and repair so you can fight another day.  
  • Power of people
What all my best campaign memories have in common for me is people. I have met some of the most incredible people through my work; those directly impacted by the issues in question but also colleagues. To me, people are the most important and valuable thing for me when it comes to what I do. It is people that bring the issues to life and give them colour. It’s why the cause gets under your skin. They are how you are able to keep fighting when it can otherwise feel hopeless. They are what makes wins matter- knowing it is having an impact on real people. People are who inspire and motivate. If you are fighting for people whose issues you feel passionate about alongside others who share that passion then everything else becomes that bit easier. They make the impossible seem possible.
Hope the above is of interest and maybe even of help to some who may see elements of their own story in there. I would love to hear other peoples stories or journeys; whether you have been in the sector for years or if you are just embarking on your journey. 
(Photo by Suzanne D. Williams on Unsplash)
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