Disabled and chronically ill workers fear they’ll be penalised for revealing their conditions. Has the pandemic helped – or are biases too entrenched?
When Grace, 24, dislocated her elbow at work, she didn’t call an ambulance or go to the hospital. Instead, she quietly went to the bathroom to pop the joint back into place before returning to her desk.
For Manchester, UK-based Grace – who has Ehlers Danlos Syndrome, a condition that causes her to experience extreme joint pain, chronic fatigue, joint instability and frequent dislocations – this was a common occurrence. She was often in so much pain that it wouldn’t be unusual to duck into a toilet stall to cry, before returning to her desk and pretending that nothing had happened.
“I work as a writer, and often disguise the fact that I am in extreme pain as I am afraid of appearing weak or incapable in my role,” explains Grace, whose surname is being withheld to protect concerns around revealing her disability. “I found it awkward to explain my condition to colleagues. I thought that it was easier just to hide it.”
It is estimated that 4.4 million disabled people – those with a physical or mental impairment with a substantial or long-term impact on their ability to do normal daily activities – are currently in employment in the UK. There’s little concrete data on how many people like Grace are disguising a disability in the workplace – but experts believe stigma surrounding many disabilities and long-term illnesses means it isn’t uncommon for individuals to keep their condition quiet from their employer and colleagues.
“The simple reason as to why disabled people don’t disclose their disability is that we’re often afraid,” says Cat Mitchell, a lecturer at University of Derby, UK, whose research focuses on the barriers disabled employees and jobseekers face. “We’re afraid that we’ll be treated differently, get fewer opportunities at work and that it will impact our chances of progressing, or even lead to us getting fired.”
In her research, Mitchell found that a quarter of those surveyed had hidden their disability from their HR department, and that only 36% were open with colleagues about their condition. She says that despite equality legislation, it remains difficult for employees to prove that they have missed out on a role or been passed over for promotion as a result of a disability – causing many to turn to secrecy instead.
In many ways, the past almost two years have changed the situation for disabled workers. Lockdown offered the opportunity for those disguising a condition to make their own workspace adjustments without fear of judgement. Yet, some argue the positive impacts of working from home could be short lived.
Hidden for a reason
The fear that many disabled individuals feel about revealing their condition is not unfounded. Research suggests that one in three people see disabled people as being less productive than their non-disabled counterparts, a belief that often plays out in workplace situations.
In the UK, 17% of disabled adults report having had a job offer withdrawn as a result of their disability, and 30% said that they felt they were not taken seriously as a candidate as a result of their disability. Data from a French study suggests that fewer than 2% of people who mentioned that they had a disability in their CV were called for an interview. And in the US, the unemployment rate for disabled individuals recently rose from 7% to 12.6%.
“It’s a vulnerable feeling, thinking that someone is going to judge you and your ability to do a job or task based on your health or an impairment,” says Rachael Mole, CEO of SIC, a non-profit organisation that helps disabled and chronically ill people to find accessible and inclusive employers. “Having to justify yourself, feeling like you have to do even more to make up for a perceived weakness, over-explaining your health in order to take sick-leave – it’s exhausting.”
After struggling to hide her disability for months, the pandemic offered Grace a surprising respite from her office problems.
“Lockdown made it easier to hide my condition, as I could take breaks if I was in pain,” she says. “I could take painkillers throughout the day, and not worry about appearing spaced-out in the office. I also didn’t have to carry a heavy bag and my laptop on public transport, which had exacerbated my pain in the past.”
Lockdown made it easier to hide my condition, as I could take breaks if I was in pain – Grace
Mitchell believes Grace is among many workers who found lockdown helped them to manage a hidden disability. Mitchell says the widespread shift to a remote-work world has normalised ways of working that could benefit disabled or chronically ill employees for years to come, as long as companies keep newly-flexible arrangements in place.
“Before the pandemic, many disabled people (including myself) struggled to get permission for days working from home,” she says. “Even when we had them, colleagues often saw them as days off, or didn’t trust that we were working hard enough when away from the office. Overall, there is a lot to gain from having more control over our working environments, and the pandemic has shown us that this doesn’t come at the expense of productivity.”
For many individuals, shifting to remote work has been life-changing. Bethan Vincent, 30, from York, UK, spent many years struggling to manage endometriosis in an office environment. Working in the technology industry, she worried that her condition would be misunderstood or viewed as a weakness in a male-dominated workplace, so chose to hide her medical issues.
After working from home during the pandemic completely transformed her ability to manage her condition, Bethan decided to leave her previous workplace and start her own business – giving herself complete control to work remotely on a permanent basis.
“Working from home was an absolute godsend,” she says. “I can now sit with a hot water bottle all day if needed. I still work a full working week, but If I need to take an hour off in the morning to rest, I can do so. I can completely manage my schedule to make sure that I am in locations with adequate hygiene facilities when needed.”
As Bethan looks to hire staff herself, she hopes to create an environment where she can be open about her endometriosis in a way that she couldn’t in her previous role. She wants her employees to feel the same freedom, and be able to ask for any adjustments that they might need. Experts believe that similar approaches became much more common during the pandemic, as remote work opened up new avenues for discussing accessibility.
“The conversation around disabilities, mental health and accessing support has definitely shifted during Covid,” says Mole, who reports seeing companies re-evaluating how they support employees with a range of needs. “The question of ‘what do you need to get your job done from home’ opened up the conversation for disabled and chronically ill people to ask for adaptive chairs and desks and flexible hours that were not on offer pre-pandemic.”
A relic of pandemic past?
Yet with pandemic-based restrictions now rolling back in many countries, some disabled workers are concerned the conditions that enabled them to work more comfortably could soon become a relic of pandemic past.
Grace’s company has now requested she return to the office for up to three days per week, and the return to commuting has exacerbated her shoulder pain. She has struggled with reducing her painkillers in an effort to appear more present around colleagues and is finding it increasingly difficult to manage the symptoms of Ehlers Danlos Syndrome. “I can’t predict when I will have a pain flare-up,” she says. “I would rather work from home and manage my condition on my own terms than have to go home sick from work.”
For workers like Grace, the pandemic offered a vision that that went beyond minor adjustments to their ways of working. The challenge now is how – and whether – employers will implement these in future – or whether they will revert back to a less-accessible past.
For those still hiding a disability, Mitchell argues the onus shouldn’t be on those dealing with everyday impairments to speak out. Instead, employers should focus on creating environments in which disabled people are welcome, and could potentially feel comfortable disclosing in future. She also believes companies making shifts towards inclusivity and support won’t just benefit those dealing with a hidden disability, but could also revolutionise the way we understand work, and what it means to be a present and productive employee.
“Although flexible working has become a much-used phrase in pandemic discussions around working practices, it is ironically not that flexible,” she says. “Rather than just introducing limited flexi-time and a few days working from home, it’s time to completely overhaul how we approach work. We are not robots who can consistently be productive in nine-to-five routines, five days a week. Designing our working patterns in a way that best suits disabled individuals will actually lead to improvements for everyone.”