15 February 2024
I am the CEO of Disability Assist, Kent’s Disabled Persons User Led Organisation. Historically, every county had an equivalent organisation offering varying services but their visibility has waned over time, making them somewhat obscure to those not in the know. Yet, it’s crucial to recognise their existence, particularly for the disabled individuals who make up 24% of the country’s population. Our visibility doesn’t match our prevalence, but it is more important than ever to recognise that disabled people exist, we are numerous, and most importantly, we matter.
As someone with multiple sclerosis (MS), I am all too aware of the hidden challenges the condition brings which extends beyond the visible mobility impairment that I experience. Most people have no idea about those. Yet, fuelled by pride and determination, I refuse to let the condition dictate the course of my life. Taking on this fellowship alongside my CEO role is a unique opportunity that allows me to bridge my personal experiences with the broader landscape of disability advocacy.
The team I work with at Disability Assist each have our own lived experience of disability. Although the cause and conditions vary greatly, we all understand and value the importance of work, responsibility, routine, and the drive to succeed. However, recruiting disabled individuals into our organisation remains a significant challenge.
Why are so many disabled individuals out of employment? This question has been on my mind for years and I had always hoped someone, somewhere was doing research to answer this important question. It wasn’t until a conversation at the Kent Care Summit in 2022 that I began to understand the opportunity for me to address it. The Kent Research Partnership approached me asking whether there were any research needs that I could identify and, through repeated conversations of this nature, the idea of a Research Fellowship took shape.
Convincing the Disability Assist Trustee Board was not easy. My initial plan to take a year out was quashed yet I felt that this opportunity was important for my personal and professional development as well as for disabled people in Kent. Eventually we compromised with a 50:50 split of my time should my Fellowship application succeed. And it did.
The focus of my research is on the barriers and enablers that influence working-age individuals with MS in considering employment. While I initially envisaged a broader study, narrowing it down to MS allowed me to contribute from a place of lived experience. Many others have faced similar hurdles and our stories deserve to be heard.
Challenges
The world of academia is polar opposite to my working world. The pressure of my CEO role to act quickly, to respond at pace and make snap decisions compared to having time to think and reflect is difficult to swing between.
Balancing my demanding role at Disability Assist with the demands of the Fellowship has proven to be a unique challenge. Academia and my working life are very different and shifting mindset multiple times each week is not easy. Finding a suitable replacement to backfill the CEO position has also presented more challenges than anticipated. Being a small organisation, we don’t have the luxury of a large team to delegate to and consequently, I find myself wearing multiple hats to handle anything and everything the organisation requires. The process of determining what tasks can be delegated to my backfill has been a learning curve which is beginning to reveal itself over time. Admittedly, my eagerness to be readily available to everyone may have created additional challenges for myself but letting go is difficult when you build an organisation from the ground up.
Unexpected Benefits
The support from the MS community and organisations like The MS Society and Kent County Council has been encouraging. I am a member of a number of networks through which it appears to be remarkably easy to find willing participants for advisory and PPI groups and people who want to be interviewed to share their stories and experiences. I am under no illusion that putting this into practice might be harder, but having a pool of willing participants does make the research journey easier.
Colleagues at the University of Kent have shown patience, supporting me along the unfamiliar academic path. Recently, I submitted my Ethics Application and it felt like reaching a milestone. However, I know I have a lot to learn in navigating literature, searches and databases. Looking ahead, I have booked courses, lectures, and seminars to expand my knowledge in Qualitative Research and look forward to refining my skills in interview techniques as I craft my topic guide and await ethics approvals.
Observations
Through the ongoing process of my Literature review, I notice that there is a lot of research looking at MS and the need to keep people in work at the time of diagnosis. However, there is a gap in research focusing on the long-term unemployed or those who have never worked. What about their stories? It’s a concern that many with MS and other conditions risk being written off and forgotten. They risk facing spiralling mental health issues and a lifetime of poverty. Improved support for the newly diagnosed is crucial, but what about everyone else?
Progress
As I progress in my fellowship, I am eager to connect with people, listen to their stories, and gain insights that will contribute to better support for individuals with MS. The ultimate goal is to bring these learnings back to Adult Social Care in the hopes that it results in better support that empowers people with MS to lead fulfilling lives through employment or meaningful occupation. I cannot understate the importance of this from a personal perspective because, without it, this condition would be unbearable for me.
Embarking on a Research and Training Fellowship was an unexpected turn in my journey, but I firmly believe in seizing opportunities as they present themselves. Who knows where this path will lead next!