The stigma around accessible employment
My name is Pippa, and I’m a psychology graduate living with chronic
illness. I blog about accessible theatre, lifestyle and fundraising at Life Of Pippa, and today I’d
like to talk about what I wish others knew about accessible employment.
When I was at university, I thought that completing my studies alongside living with my chronic illness would be the most difficult part of my journey, and that after graduation things could only get easier. However, I quickly discovered that making employment opportunities work for me and my circumstances would be equally as challenging.
I’ve lived with my condition since I was a teenager, and by the time I graduated, I knew exactly what kind of work I needed: opportunities suitable for my skills and interests, but with part-time hours and where I could mostly work from home. I’ve had a whole range of employment experiences, but thanks to my internship at Scope and recently pursuing opportunities in freelance writing, I feel so fortunate to have found things that can and do work for me and my health.
However, what I wasn’t prepared for was how my situation could be misunderstood by others. Comments such as ‘I wish I could work part-time!’ or ‘it must be so nice to work from home!’, are often made completely innocently, but just serve to demonstrate how little these people know about myself and my condition. To an extent, I can understand how somebody could look at me and misinterpret my way of life as just an ‘easier route’. My illness is invisible, and my condition management mostly takes place at home: very few people see my struggle, and so I can see why they could wrongly think that I don’t work as hard as them.
What I’d like people to know is that these factors are a necessity, not a luxury. Being disabled is a full-time job in itself. My condition gives me chronic pain and fatigue, autonomic dysfunction, sensory overload and a whole other bunch of delightful symptoms on a daily basis. Even the smallest amount of over-exertion can make me really unwell: standing up for a few minutes, trying to write too much in one go, or sometimes even just somebody slamming a door too loudly can leave me suffering a great deal. Every part of my day has to be so carefully managed by ‘pacing’ just to make it through, and without these accessible opportunities, it’s clear that I wouldn’t be able to work at all.
My part-time hours aren’t there because I spend my free time going shopping or seeing friends or doing the things that other people my age like to do: they’re there because when I’ve finished my work for the day, I need at least two hours in a dark, quiet room with no external stimuli just to make sure I can physically recover and do it all again tomorrow. I don’t work at home because I can’t be bothered to go into an office: I do it because every time I leave the house, the physical toll it takes means that the whole next day is insufferable. These things don’t mean that I work any less diligently than you do: in fact, I’d argue that my circumstances mean that I have to work twice as hard, just to achieve half as much as my non-disabled peers.
If people think my reduced hours and home-based work are so brilliant, they’re welcome to them- as long as they take my chronic illness too.
Finding suitable employment when you have a disability is hard, and managing it on a day-to-day basis can be even harder. However, I really enjoy my field of work and the sense of purpose it gives me, and I know that I’m fortunate to even be able to work at all. There will be people reading this who will currently be searching for this kind of employment themselves- in the future, I hope with everything in me that there are more of these opportunities to go around. Employing disabled people isn’t an act of charity, and our reasonable adjustments are there for a reason- they’re not there because I have it easy, but because they at least help to put me on a level playing field. And for that, I’m grateful.
Do you currently work part-time or have reasonable adjustments in place for your job? What would you like people to know?