Disability and diversity: a first person perspective

Author: Fay Capstick

I usually prefer to pretend that my disability doesn’t exist. I don’t like being held back in any way, and I don’t like to think of myself as being ‘less than’. However the reality is that disability does impact my life. It would be impossible for it not to. 

I have Ehlers Danlos Syndrome (EDS), a genetic condition. I am the only one in my family with it, so it was new territory for my parents having to deal with a condition that is little understood now, and even less so then. My life has basically been a learning curve of what works for me to ensure that I can live as normal a life as possible. 

This seems like a good time to share how EDS affects my working life, and what accommodations a good employer makes to enable employees with a disability to work as effectively and productively as anyone else. 

It is very easy for any business to pay lip service to being inclusive towards disabled and minority staff, however it takes more than writing it in a tender or putting a logo on your website to make it true. Accommodating a member of staff with any disability takes some sensitivity and knowledge. Parker Shaw have managed this. We have educated each other in a learning process over the years that has also benefitted other staff with health issues, as well as the candidates that we place. This has been a real-world, symbiotic progression rather than a textbook exercise with no execution.

EDS makes my joints hypermobile. Simply put, they can bend the wrong way and dislocate. This causes pain and fatigue issues, which of course impacts working in a productive way. EDS can also be exacerbated by overdoing things on good days, so pacing is an important skill I’ve had to learn in order to get anything done. Accommodations for pain, fatigue and injury have been made since I was at school, so it is a natural part of life for me. It can be harder for others to see, as EDS is considered an invisible disability: while I do have scars due to it, these aren’t visible in work clothing. Spending my life trying to disguise it means that I am very good at blending in. A medical professional would notice some tells, but these would not be spotted by someone unfamiliar with how joint hypermobility works. This all changed a few years ago when I realised that, for my own safety, it would be a good idea to use a walking stick at certain times for extra support. I’m a big fan of staying upright, and this is more likely with a stick. Plus, it gives people a clue, especially on public transport, that I might need a seat and not to knock me. Even with the stick clearly visible, it can still be hard for people to accept that a young looking woman might need it. 

For reasons of pacing and pain, I work from home. I have never done a full day in an office. Ever. I wouldn’t cope. This is nothing new, as my schooling was modified to accommodate my need for rest, breaks, and regular movement to help with pain. Parker Shaw understand this, and working from home has been the answer. I can’t manage a full day or set hours as EDS is too unpredictable, and having a condition that can flare is not fun. Thankfully there are ways around this too: I work part time, as full time just wouldn’t be an option. This can be frustrating, but it has meant that I have developed a work/life balance that is probably a healthier way to live. 

My work generally consists of research and writing, and usually this isn’t time critical. Parker Shaw and I plan a pipeline of work as far ahead as possible. This means that I can think ahead and juggle things to manage my output. On a good day I can try to do more, and on a bad day less. Part time working means I have some flexibility to push work back or forward. This flexibility wouldn't be possible if I were full time, as doing a full day and more on top to catch up wouldn’t work with fatigue issues. I learnt this the hard way as a teenager: exam cramming was simply impossible. 

Turning up to the office is very draining for me. The travel, and the nature of sitting constantly at a desk or in a meeting, simply don’t agree with keeping my body happy. To get around this I aim to do all meetings over Skype or the phone. This dramatically lessens the impact on me, meaning that I can be as productive as possible with the rest of my working day and week. This is why pacing is so integral to my life: some things are important enough to overdo things for, but this needs to be considered and planned around. 

Technology makes a huge difference, and not just having fast fibre broadband at home. iPads mean I can work easily wherever is comfortable for me that day, be it the sofa, desk, table or garden. The size of an iPad makes it easy to move and carry. My poor eyesight can be helped with bigger fonts and a brighter setting on the display. Being able to work where I’m comfortable, which can’t be predicted ahead, makes a massive difference to me. In addition, being at home means that I can choose how hot or cold I want to be, without having to please the rest of an office of people. This helps manage symptoms of POTS, another condition which is closely associated with EDS. Technology also means I can make any calls or attend virtual meetings hands free or with in-ear headphones: EDS associated jaw problems mean holding a telephone to my ear, or over-ear headphones, would cause me discomfort. Parker Shaw have also come to understand that on bad days I need to limit my talking to prevent pain.

I’d like to think that by coming to understand me, Parker Shaw and all its staff have developed a general understanding of disability and inclusion that has benefited everyone in the company. We have an unrivalled track record with recruiting and retaining disabled staff, which also helps us to provide a better service to the candidates that we place, and advise clients accordingly on what they need to do to be inclusive. 

Luckily Parker Shaw have been extremely accommodating of me and my evolving health needs over the years. Disability isn’t a static thing, and it’s an ongoing learning process on both sides. I am lucky in that my skills are suited to a job that can be modified for my needs, and as with all good relationships, compassion, communication and compromise go a long way.