Working with Ataxia

Having a successful, traditional career was always one of my measures of success. My diagnosis with Friedreich’s Ataxia (a progressive and incurable neurological condition) at 15 shook this, but my time at University gave me the confidence to continue. My 10-year career in Local Government was rewarding and exciting, but there were heavy sacrifices. I eventually managed to shake-off the stereotype of only doing disability related work. What did the whole experience show me about the value of a career?

My experience at University

In 2000, I went to University. I had worked hard to get there but quickly realised that I was in a privileged position from which I could help others. You can read more about this in my post ‘University Challenge’. In my final year, alongside completing my coursework, I stood for and was elected as ‘Students with Disabilities Officer’, as part of a network of other students with disabilities around the UK. Alongside a wider political awakening through my course, I began to develop a strong belief in Representation and a greater understanding of Disability Rights.

After I graduated, I was elected as Deputy President of Oxford Brookes Students’ Union for the following academic year. Working from the Students’ Union Advice Centre, this was my first paid post and my first experience as a Trustee. I undertook valuable NUS (National Union of Students) training in running a Charity and effective representation and campaigning.

What did I do then?

I worked in progressively larger local authorities in Oxfordshire on access and equalities, gaining skills and experience, but always on temporary contracts. After countless applications for Public Sector jobs all across Oxfordshire, I secured a job in the Equalities Division of Birmingham City Council and moved to Solihull in 2006. Now an experienced practitioner, I was attached to the Housing Department where I supported and developed strategy and policy. Working with the vibrant communities in Birmingham felt more meaningful somehow than my work in Oxfordshire.

In 2008, to prepare for the forthcoming inspection by the Audit Commission, I underwent the Housing Department’s intense management assessment process. I emerged as the highest rated manager in my Division.

I was an excellent manager, but wanted to show that there was much more to me than disability. In 2009, I secured a management post in Birmingham City Council’s Housing Department. I managed a busy District rent team, annually collecting £4M from about 10,000 homes in the North and then the Edgbaston districts of Birmingham. Although the post did not draw on my knowledge of equalities, I found the change in focus from supporting communities to managing collection of rent to be challenging. I write about this in my blog-post, ‘Talking to Tenants’.

What Support did I have?

I relied on emotional support from family and colleagues, financial support from the Government and support from my supportive employer.

Because I chose only to work in the Public Sector, my employers were all very supportive, allowing me time off to go to medical appointments. However, the emotional support I had was much more important. Another ‘Life-Goal’ I imposed on myself was to have a loving marriage and family. I was very fortunate I got married before I began my career, because working full-time eclipsed everything else in my life. I convinced my Wife to move to Birmingham, which she found as difficult as I found it thrilling. I don’t know how, but I’m so thankful that my marriage has outlasted my career.

Doing anything with a disability comes with ‘hidden’ costs. A government scheme called ‘Access to Work’, which supports disabled people either with an employer or as start-up business, paid for my taxis to work, adjustments to buildings, and even a new wheelchair after it broke spectacularly on the steep hill outside my office in Birmingham. Managing and submitting receipts was OK when I got used to doing it. Ten years after I used it, the Access to Work Scheme still exists, but has been heavily cut and capped. In August 2020, The Department for Work and Pensions claimed that it will be extending this scheme to support disabled workers through the global pandemic.

How did I know when to stop?

I didn’t. But working full-time was costing me. My taxis were in the mornings, after work I’d struggle up hills in my own time at the end of each working day. I was was already working from home a couple of days a month, but my request to reduce my hours was flatly denied. Undeterred, I asked to be referred to the Council’s Doctor. He read my file, asked a few questions and shocked me by recommending I retire immediately. I had not even suggested retirement. Incredulous, I told my team. Some told me they were relieved as they had been concerned about my health for months.

Was it worth it?

Yes, I really enjoyed the social element of work. Being part of something bigger than myself and setting a positive example to others was (and still is) important to me. It was great for building my self-confidence and self-esteem. I developed many useful skills, and membership of the pension scheme and the salary were great. With roots in Birmingham, I instantly felt at home in that cosmopolitan, bustling, young city. I’m proud that I worked full-time right up until I retired.

I was very fortunate throughout my career that I was able to do a job I valued and enjoyed. I chose Local Authority employers shared my ethos of Public Service. They were generally larger and as they promoted equal opportunities, they were prepared to employ and support disabled people to do so.

But there were massive sacrifices. I became time-poor, forever on a treadmill. I felt constant pressure to prove myself, to not have time off sick and stay longer at the office. I skipped too many lunches and ate too many takeaways. I bore countless rejections, eventually having to apply for jobs in London and Birmingham. I always used public transport, but especially remember the gruelling five-hour daily round trip from Oxford to Birmingham I made for the first few months I worked there. I just wasn’t around as much as I wanted to be for our daughter’s early years, and tiredness dogged me throughout my career.

There are Institutional barriers. Disabled Workers (as with every minority) feel they have to work harder to push against Society’s dominant idea of disabled people as ‘sick’ and incapable’. The fact that we are still undervalued in ‘the market’ proves this. According to Office for National Statistics (ONS) data, the average disability pay gap was 12.2% in the UK in 2018. That was before the Coronavirus Pandemic and Brexit. A regressive welfare system in the UK makes it even harder to make the transition from benefits to work.

What would I change?

I managed to work full-time for ten years, but was it the best use of my ‘golden’ time? My relationship with work was about clinging on to what I thought was a universally accepted measure of success. Part of being normal. I realise now that this was not a very healthy attitude. If I could have seen myself burning out, I could have used flexible working arrangements and assistive technology to work for a bit longer, but would that have been the best thing for me?

What have I been doing since?

I picked up where I left off studying with the Open University, completing courses in Creative Writing. I worked with our pet, Tara, to train her as a helper dog. I have written about our adventures in my blog-post ‘My Support Dog Saved Our Lives’.

We also moved back to Oxfordshire, but it wasn’t until I started exploring voluntary work that I realised I’d developed some very useful skills. Volunteering is not only a great way of giving something back, it is also a great way of developing, using and learning new skills. It is the most rewarding work I’ve ever done, I have met so many wonderful people. Each opportunity has fulfilled me, built my confidence and led to new contacts and prospects.

I discuss my voluntary work since I retired and how my involvement with AtaxiaUK has influenced me in my post ‘AtaxiaUK and Me.’

What is your advice?

Whether full-time, part-time, self-employed or freelance, your employment must be tailored to you. Ask yourself why you want to start working and who is going to be supporting you, then consider volunteering first or instead. It offers many of the same rewards that working does and gives you the flexibility to focus on yourself during your most productive years. Have a short-term plan that keeps you focussed on meeting your needs and moving upward. Be prepared to move to a new place to access new opportunities. Focus on larger employers, that offer rewarding work and are better able and prepared to support their disabled employees.

These things helped or would have helped me, but the most important thing I learned is that employment looks different for everyone and is NOT a measure of success. Success is a measure of the people who support you and the friends you make on your journey.

Richard Brown