New Year Reflections: Living Not Just Existing
Amy Bradley, regional fundraiser with Leonard Cheshire, describes how 2019 was the year of breakthroughs and how a flexible and supportive workplace helped her manage her health condition.
New Year. A time for reflection, a time for revisiting ambitions, setting goals, looking to the future.
For me, 2019 was a year of breakthroughs, a year of hope, one of friends and family.
A year where I’ve started to live again, not just exist.
2019 was a year in which I began to re-explore ambitions which had been put on hold for so long.
I’m Amy, a passionate pianist, crafter, volunteer, daughter, sister and friend. Not too long ago, I’d have added aspiring academic and triple-jumper to the mix, but some things just don’t turn out as planned.
In September 2015, I started a PhD at The University of Manchester. The project was looking at how the nervous and immune systems communicate with each other in the contexts of stroke and infection and it really was a dream come true!
All was going well, I was settling into the lab, embracing the challenges that come with research science and relishing the mind-bending discussions I was having with colleagues. Then, in April 2016, I suddenly developed a plethora of unexplained symptoms —from muscle spasms and excruciating pain to overwhelming fatigue and loss of co-ordination. One afternoon I woke up and discovered I couldn’t walk properly: I looked like I was intoxicated or like I’d had a stroke.
I struggled to co-ordinate my limbs, manage the pain and was so exhausted I was sleeping for up to 20 hours a day. For six months I could barely to read a few sentences, let alone comprehend as much as newspaper article. At the worst point, I could barely crawl and it felt like woodworm had eaten through my muscles. It was terrifying.
Making moves and moving forward
Undiagnosed for eight months, I eventually received a diagnosis of Functional Neurological Disorder (FND). The prognosis was uncertain, specialist treatment difficult to find.
Despite wonderful support from The University of Manchester and my PhD supervisors, we came to the mutual agreement that the physical and time-sensitive demands of research were just too great for my health and physical capabilities at the time: I really was very unwell. Instead of completing the full PhD, I submitted my preliminary work for an MPhil.
But what next?
In 2018, two years since I first became unwell, I was still frequently in pain, using a wheelchair on some days, on others, walking sticks. I wanted to re-enter employment, but here I reached a sticking point. Thanks to treatment after my diagnosis, I was better at identifying triggers which caused my condition to ‘flare’ and had become somewhat better at managing my condition, pacing myself and generally asking for help when I need it.
However, I still was nowhere near completely well and didn’t know what sort of a job I could even start to look at.
At what point in the employment process should I disclose my need for flexibility? What sort of reasonable adjustments were, indeed, ‘reasonable’? How I should write down my work history? Or explain the sick leave that I’d taken… the list went on.
I knew that I was enthusiastic, dedicated and driven. I knew that I would always give of my best, and I desperately wanted to be able to contribute to an organisation, and, let’s face it, live a physically and financially independent life.
But I knew that I couldn’t show that unless I wasn’t written off at the get go.
This is where Leonard Cheshire and Change 100 provided an opportunity I could only have ever dreamed of.
Change 100 is Leonard Cheshire’s, award-winning internship programme, which offers paid internships to talented graduates with disabilities or long-term health conditions.
The programme matches graduates to forward-thinking employers who may:
- be searching for a top graduate to fill a short-term position
- be looking to diversify their workforce
- want to gain experience in employing someone with a disability
- be seeking a different perspective on a project
- simply be businesses that simply want to offer a graduate an opportunity of a lifetime.
My Change 100 experience
Every day during the first week of my internship (and for many weeks thereafter!), my eyes were filled with tears of joy, happiness and utter disbelief.
Before Change 100, I hadn’t realised that I’d begun to doubt whether I could ever make a meaningful contribution. I hadn’t realised that I’d started to believe that my condition made me a burden. I certainly hadn’t imagined that there were reasonable adjustments which would enable me, with a fluctuating and, at times, greatly debilitating condition, to be employable and an asset.
My internship opened up what felt like the door to a physically and financially independent life. I worked in Leonard Cheshire’s Regional Fundraising Team and was given the opportunity to organise the Leonard Cheshire Christmas Extravaganza, with a Gareth Malone-style Christmas Choir. I managed relationships with corporate supporters, attended networking events, raised funds and, most importantly, regained confidence in what I could do and could achieve.
Every week, every day even, I could feel myself becoming stronger and more confident. I was achieving things I didn’t believe I could, given my health condition, and felt like I was actually making a difference. I was shown that I could use my experiences as a scientist and as someone with lived experience of disability to my advantage and to help other people. I was made to feel like my voice mattered and that I was having an impact.
I learnt that there were reasonable adjustments which would enable me to work and to do a good job. These included working from home which removed commuting time, helping me to conserve my energy and meaning that I didn’t arrive at work exhausted. It also enabled me to work in compression clothing, tucked up with a hot water bottle on days when my pain and mobility problems were particularly severe.
My internship was also part-time which enabled me to manage my fatigue and I could flex my hours where needed. I still got my job done but these adjustments facilitated my attendance at specialist medical appointments and allowed me to take regular breaks when I was having a bad day. As a result, I was able to work reliably and consistently meet deadlines.
The power of Change 100
For me, the most powerful part of Change 100 was being treated as a person first and foremost. Yes, I had a health condition/ disability, but that was secondary. I didn’t feel like the programme or my placement gave me ‘special treatment’: I was an employee, but, I knew that if I needed support I could speak up and it would be welcomed.
This isn’t just my experience: many Change 100 interns have written testimonies about their time on the programme. Isaac Verkaik, a 2018 Change 100 intern who worked as a Recruitment Assistant with Open Society Foundations, who has Dyslexia. Isaac’s placement mentor was also Dyslexic. He said that the keenness and openness of his mentor in showing him how he could be successful and manage the way in which Dyslexia impacted him in the workplace was a huge part of his internship and made a significant difference.
Isaac’s mentor openly said how much he’d learned from his involvement with Change 100. Firstly, he gained experience in how to manage someone generally and managing someone with dyslexia specifically. Secondly, Isaac’s mentor said that the experience was hugely beneficial for his own development, that he learnt from Isaac’s coping strategies for Dyslexia and ways of working. Isaac is now the Higher Executive Officer for Diversion and Inclusion within the Cabinet Office in Westminster where he continues to thrive.
Where am I now?
I am proud to say that I have recently completed a year as a permanent member of staff in Leonard Cheshire’s Regional Fundraising Team. I work with fantastic colleagues, have friends who have stuck by me through thick and thin, and now have hope that things will continue to get better. Most of all, I’m proud that I have the opportunity to give back to an organisation which has given me so much- the gift of a future.
This year, I have increased my hours, increased my responsibilities and developed new skills. I’ve had some incredible opportunities to speak and present at a range of meetings, conferences and away-days and was the winner of Leonard Cheshire’s ‘Proud Award’ at the annual employee award ceremony. I’m also excitedly looking forward to new opportunities to make a difference as I have just received a promotion and will be joining our Insight Team in March.
My journey has shaped me and shaped my destination. I needed to know that there was a destination to help me keep fighting, to stop me from disappearing into a pit of nothingness. But I also know that the destination would not have been in reach without the support I received from Leonard Cheshire and their Change 100 programme.
Are You Ready to Lead the Way?
In 2018 there were 800 applications for the Change 100, half of those applied were interviewed and placements were offered to 129. Just two of these placements were in the North East. Every year we have many, many more capable candidates than available placements.
Ultimately, Change 100 is a programme for growth for the intern, your staff and organisation. It is a programme of ambition, drive and a desire to do something different. Change 100 is one way to make a real difference to your business, your customers and your intern. It provides opportunity to meet Disability Confident Kitemark criteria, improve your CSR and prospects for tenders. Are you ready to join us and take on the challenge?