When you discuss the pros and cons of homeworking, do you consider how homeworking enables many people with chronic illness and disability to finally be able to work?
The homeworking conversation
Remote working is a hot topic during these COVID times. To stop the spread of the virus, many companies set themselves up so that their employees could work remotely.
Remote working has it’s positives, and it has it’s negatives. The conversation is ongoing as companies consider whether to continue to support remote working. When we talk about the future, ‘hybrid working’ is now on the tips of our tongues. Hybrid working describes a working pattern of being in the office some days and at home on others.
But there’s been a big gaping hole in the conversations. We are not talking about the phenomenal impact of homeworking on disability inclusion. If companies offer remote and hybrid working as a working pattern it could be one of the best things to happen to the disability community for decades. Sadly, it’s rare to hear people talk about how homeworking represents a move to include people with chronic illness and disabilities in the workplace. People are not talking about how remote working reduces ableism in our society.
What is Ableism? And what does it have to do with the homeworking discussion?
Ableism is discrimination and prejudice in favour of able-bodied people. For people with disabilities, it is what racism is for people of colour, or what sexism is for people who identify as female.
How is Ableism related to the discussion about remote working? A significant proportion of people with a chronic illness or disability desperately want to work but can’t. Why not? Because most companies require us to get to the office and spend the day there, even though it is possible to do the work from home.
We were told that remote working doesn’t work. We were told that companies cannot employ someone who works remotely because it will affect performance, or because the job can’t be done remotely. Where does that leave us? Stuck at home, desperately wanting to use our skills for paid employment. Working is such an important part of mental health as well as financial stability.
But when COVID struck, all of a sudden remote working was possible. And not only that, but thanks to the move to remote working for a sustained period during COVID, we have the proof we needed that remote working works. Performance doesn’t decrease when people are allowed to work remotely. Companies that practice inclusion do better than those who do not.
How has it affected me?
For me, the move to remote working means that:
- I can use pacing to manage my condition I have multiple sclerosis and ehlers danlos syndrome. If I don’t pace the energy I use in my day, I crash. My symptoms exacerbate to a debilitating level and I must lie down in a dark room. When I did used to make it to the office, I’d have to spend the next day in a darkened room, waiting for my body to become less poorly.
- I have a quality of life where I don’t just work and then crash. My symptoms (pain, exhaustion, sensory overload, nausea, weakness, shaking, visual disturbances) have not exacerbated in the day so I don’t have to spend the evening in bed with my eyes shut. My husbnad and I can have dinner and watch a film together.
- I won’t have to medically retire if I am made redundant. I work for IBM, which was one of the only companies offering part time, remote working as a reasonable adjustment for people with disabilities or chronic illness. Before the lockdown, I was terrified – if I was made redundant, I could not work for another company. I would be reliant on benefits. Working is part of my identity.
- I am included in all meetings. Previously, I would not be able to attend some meetings. If I could dial into a meeting, I was on the phone, not on a video call. I could not participate in the same way. It was the most frustrating situation.
- I am not lonely and others have empathy for my situation. My colleagues now understand what it’s like to be stuck at home working remotely. They can support me. Before the lockdown, I just had to get on with it on my own.
What does this conversation feel like to us?
We found it difficult watching this move to remote working. Companies and wider society told us it wasn’t possible. For those of us already working from home, we had to:
- Fight so hard to be allowed to work from home
- Train ourselves and our colleagues on tools to enable us to participate remotely.
- Deal with the impact on our mental health of working from home, isolated from the rest of society.
- Learn what is possible when working remotely and convince our managers that the company can make the adjustments to do this
- Work extra-hard. We felt that we had to prove that we could be just as productive as our colleagues.
- Deal with ableist migroaggressions about us. For example, I sometimes had colleagues say to me: ‘I wish I could work from home in my pajamas’, ‘do you watch daytime TV while working?’, ‘How do I know that you’re working if you’re chilling out at home?’. They did not understand how I would’ve given anything to be able to to head into the office to see people, have a change of scene, and not feel so isolated.
…and we had to do all this while we lived with our symptoms such as chronic pain and exhaustion.
What can you do?
There are so many positives and negatives of homeworking and hybrid working. We’ve all had such different experiences of working in this way. For those with children, the impossible task of working at home while homeschooling and caring for children has been relentless and unsustainable. For others, working from home has presented real challenges in finding space and quiet in a home not designed for working. And there are those who need the separation of work from home, to travel to a different place for focus or for mental health.
I want to ask you to include people with chronic illnesses and disabilities in this list. I want understanding of the isolation and challenges that come with remote working lead to empathy and a push for inclusion.
Your experience of these strange times is a super power. You have empathy for the isolation we face every day and an understanding of the challenges that remote working brings. Our community never dreamt this would be possible.
Let’s not go back to ‘normal’. Instead, let’s use our empathy to set up our workplaces so that those that want to work, can. Our workforce is so much more powerful (including in ££££’s!) when we are inclusive. And our society is a better one for it.
Find out more
- Follow the hashtag #myaccessiblepandemic
- Grab a cuppa and read this BBC news article ‘Working from home has helped me keep a full-time job“, which features Ruby Jones, creator of the #myaccessiblepandemic hashtag. Ruby has Ehlers Danlos Syndrome (like me!).