I’m sure I speak for a number of disabled employees when I say that what I want – rather, what I need is just a few instrumental changes to be made so that I can forget about my limitations and truly focus on the work in hand.
I am so happy that a combination of research and good fortune has enabled me to work for an organisation that was not afraid to employ me. It has handled my disability with professionalism, sensitivity, and tact. This has allowed me something I have wished for: to live my life, have a career and to be myself without shame.
Against The Odds
I achieved undergraduate and postgraduate qualifications by attending university as much as I was able and the rest working from my bed. After a miserable few months working unrelentingly for a hostile media company, I returned to working in the arts and was relieved to find ‘normal’ working hours, an upbeat workplace, and a less hierarchical structure that didn’t disregard the needs of younger employees.
I was prepared with a leaflet about how employers should deal with my condition but this proved unnecessary: I did shorter hours for the first week at my manager’s suggestion. I lived with my parents, enabling me their support – emotional and practical – for the first six weeks of the job. I did, however, have to find a home in an expensive city on a lower salary (a fifth less hours, in a lower-paid sphere) with a straightforward commute and understanding flatmates: a serious challenge in addition to the demands of a new job.
Working for a large, varied and established organisation, as opposed to a small start-up, takes off some pressure: if I need a break no one is waiting impatiently for my return. Furthermore, there is a compassionate approach to illness, which conversely has meant I am barely ever off ill, knowing that the colleagues around me are kind and understanding. This has improved my health overall and the crushing guilt that I feel for being unwell in my early twenties. My only instance of sick leave was two days with a contagious virus, totally separate to my ongoing condition.
My career and my life have been transformed. As an ambitious, fairly high-achieving person it has taken me nearly ten years to come to terms with what has happened to me and accept my limitations. I have found out what I need, fought strenuously against these things and finally, reluctantly, accepted the changes.
Having once questioned whether I would be able to work at all, these are the things that allow me to work full-time:
reasonable working hours (standard 9 to 5, with breaks when I need them and up to an hour for lunch)
a supportive manager with whom I can maintain clear, professional communication
some freedom to manage my own workload and priorities
the ability to schedule alternating mental and physical activity
a comfortable office chair (bought for me by work on the advice of occupational health, a pro-active service)
a light-touch keyboard and a footrest (which I brought in myself)
fibre-tip type pens (ordered through work) so my hands hurt less when I write
a positive, ‘human’ and largely meritocratic work environment, where everyone pulls their weight
a compassionate attitude from colleagues, which I return with regard to their difficulties
I hope this helps any other disabled employee to discover what might help them, to make these things happen and nudge open any doors which they once felt were firmly closed to them.
The original author of this article wishes to remain anonymous.