It’s Disability History Awareness Month and, this year, the theme is ‘Disability, livelihood & employment’. One of the biggest issues disabled employees have been speaking to us about is the damaging misperception that they don’t want to work, and the obstacles that are truly standing in the way of working.
These misperceptions were unhelpfully fuelled by some of the high profile comments made by officials of the previous government, like former Work and Pensions Secretary Mel Stride. He said that the UK’s attitude towards mental health is “in danger of going too far” and that people are “mistaking the normal anxieties of life” for medical conditions, which is preventing them working and increasing the financial burden of benefits.
Government ‘scapegoated’ disabled people
He also declared his intention to get people with “mild” conditions back into the workplace, specifically talking about ‘Universal Support’ for disabled workers. The new Labour government is still reviewing the current disability benefits system (which started in the last government’s term) with the intention to make it more efficient, fair and in line with the needs of disabled people.
As The Guardian newspaper wrote in the aftermath of Stride’s comments, “there’s virtually no evidence to back his sweeping claims, which scapegoat disabled people”.
No one wants to sit on the sofa watching daytime TV
Sarah Gashier, Workplace Wellbeing Consultant who has kidney disease, speaks for many workers living with disabilities and chronic illness when she says, exasperated:
“No one wants to just sit at home on the sofa watching daytime TV all the time! Most people want to be with their colleagues and working. When my employer prevented me from working it felt like some sort of prison. I wanted to work. They weren’t allowing me to. It was an awful, stressful time.”
Hasan Reza, Head of EDI at Kent Community Health NHS Foundation Trust, who lives and works with the ongoing, disabling effects of cancer treatment from when he was a six year old boy, agrees that the “some comments in the national discourse really didn’t help” because they created a narrative that “people that are ill don’t work, but the realities are quite different”.
“A lot of people with longterm health conditions, especially people who have cancer, do want to work,” he says. “They maybe even push themselves to do more than they should do. That’s one reason there can be an issue around presenteeism; people coming to work who have longterm health conditions despite not feeling well enough.”
Employers need to support workers with disabilities better
Reza says that the data actually suggests the opposite of what Stride was suggesting: people with longterm illnesses and with disabilities are more likely to want to remain in employment.
Talk to people with disabilities and they will often tell you that what they need from their workplace is better support. “And that means looking at your disability and carers leave, your health and wellbeing offering and your culture,” says Reza. All of which he has done at the NHS Trust where he works, to great success: when the Trust’s landmark ‘Nobody Left Behind’ EDI strategy was launched, the declaration rate was just 3%, today it stands at above 10%.
How has this huge surge in disability declarations been achieved?
“I think a large part comes down to the offer in place and the fact it does not require a disability declaration; you can access the offers without one. That’s led people to understand how disability positive we are. So then, they’ve felt comfortable making a declaration,” says Reza, adding that it shows how people feel confident to speak up when there is a culture of trust, belonging and psychological safety.
He adds the fact that he, and his Trust’s Chief People Officer, both also talk openly about their own experiences of health and wellbeing.
“We’ve been very vocal, and taken quite a vulnerable approach to bearing ourselves to the organisation, and it’s been massively positive. The thing about disability is you often can’t see it. That’s why conversations are important.”
We need more compassion at work
But what needs to happen, more than anything, when it comes to disability in the workplace is an increase in compassion, empathy and understanding. Employees living and working with disabilities will also often say that, while their physical needs are often catered for, their emotional and mental health needs are often neglected – or, even worse, invalidated and adversely affected by the way they are treated.
Gashier is an example of this. She successfully took her former employer to tribunal for discrimination and a ruling was made in her favour. She has no doubt that her bad treatment, including bullying, invalidation and alienation, was due to her disability.
Not just technical or physical adjustments are necessary
“Workplaces are OK with making logistical adjustments but they tend to lack compassion,” she says. “They will make the practical and technical changes but there’s a huge struggle around behaviour and understanding. A huge amount of people who are out of work are definitely not out of work because they can’t work. They are out of work because of the struggle to get the adjustments and understanding that they need. When it comes to disability at work, we have a very, very long way to go.”
It’s well documented that the healthcare industry worldwide is experiencing what has been dubbed a “crisis of compassion”. This has been attributed to the fact that health professionals are so overstretched and stressed, often burning out and working with a severe lack of resources, that they have no extra bandwidth for compassion, beyond getting the job done.
Stress affects our ability to be compassionate
It’s also well documented that stress can significantly affect our capacity to show compassion towards others. This has an evolutionary function; when under stress our emotional and cognitive abilities are reduced so we can focus on our own personal survival, which makes it harder for us to empathise with our fellow humans.
Basically, when times get tough, we are hardwired to be selfish. Added to this, there’s something called ‘compassion fatigue’ which happens when people are repeatedly in contact with suffering and they develop a certain numbness, or even annoyance, in reaction to it.
But could the same be applied to the workplace generally, not just the healthcare industry? We know that rates of burnout are at record highs, as are the levels of anxiety and depression, as well as chronic illnesses.
Are we experiencing a ‘crisis of compassion’?
The bigger questions, relevant to all employers not just those in the healthcare sector, are:
Are we, as a society, experiencing a crisis of compassion because so many of us are also stretched to breaking point?
Is this particularly true for line managers who are increasingly tasked with looking after the wellbeing of others, as well as many other wide-ranging tasks they never used to have responsibility for?
Could it be that our compassion reserves are collectively low due to all the stress in the world – the rapid pace of modern life, the pressure, the wars, the cost of living crisis, the global economic instability and then, to top it all off, the looming apocalyptic climate crisis?
What can employers do about this crisis?
If the answers are yes, then what can employers do to combat this crisis of compassion?
Like so many things, the first step is to be aware of it, which hopefully this article is doing. And the second important step is to do something constructive with this knowledge. But this doesn’t mean writing a press release about what you, as a company, are doing about the disability agenda, without actually tackling behaviour and culture around it first.
This, unfortunately, is also Gashier’s experience at more than one employer where PR was prioritised over practice.
Are you prioritising PR over practice?
She says:
“The employer, during my tribunal, put some communications out, including press releases, which made me a little sick. It was about how they were doing awareness work around disabilities and invisible disabilities. They had some speakers I knew coming into the organisation. They were doing all this, while knowing the culture around disability was negative and discriminating. They did this while knowing the complaints I was bringing about the way they’d discriminated against me for my disability, for having kidney failure. They knew this at line manager level, and at leadership level.”
The most powerful behaviour change you can encourage is a culture of listening and trusting in someone’s description of their experience of their illness. Gashier’s line manager didn’t do this. They used the phrasing “she believes” and “she claims” when talking about the impact of her kidney disease on her health.
Insensitive remarks about disability
A senior leader, too, made insensitive remarks towards her in a busy open-plan office; they said “we all have illnesses”, when Gashier informed them that she would have to start dialysis soon and need an operation in the next month.
This word choice clearly reflects a lack of trust, doubting the employee’s description of her own experience, as well being patronising and uncompassionate. These were all examples used in Gashier’s case against her employer, which led to a ruling in her favour.
Yes, of course there are instances of employees trying to ‘work the system’ by exaggerating their disabilities. But this employee has a condition so severe that she needs to regularly dialyse – a life saving treatment that she chooses to do in the evening “because I don’t want it to seem like I have a disability, or that I’m slacking at work, because work gives me purpose, motivates me and provides a sense of fulfilment in my life”.
Misunderstanding and trivialisation of disability
In this article, Reza talks about the human tendency to compare their aches and pains to those suffering. He encountered people talking about their knee troubles, for example, when he was facing a major operation to replace the extensive metal in his leg following cancer.
“Of course, this might be people wanting to empathise, but it ends up being about not understanding, or about trivialising,” he says. “That’s why I try and share my story as much as possible. People need to hear the impact of their words and actions.”
One of the other human tendencies that we’ve heard repeatedly here at MAD Media, in relation to disability at work, is the way colleagues make assumptions about how “well” or “unwell” or “disabled” a person is based purely on their appearance.
Ridiculous example: weight loss
An example which clearly outlines the ridiculousness of this is weight loss. Several of our interviewees have told us in the past about how upsetting it is to be told how “great” or “amazing” they look, and how they must “be really well” on account of the fact they’ve lost weight.
This has happened to Dr Judith Grant who caught Covid in March 2020 and went on to experience Long Covid and many health complications in the years following:
“I lost a significant amount of weight at one point, as I kept having adverse reactions to things I ate. This weight loss made people comment even more about how well I looked, even though there was nothing healthy about why I lost weight. Even medical professionals would say that I looked fit and healthy when I clearly didn’t feel it. And that would be after I had just explained the horrid symptoms I was experiencing!”
How we look and how we feel are not the same
The big learning for all of us working towards more compassionate workplaces is, as Grant says, to recognise that “what we look like, and how we feel and what is going on for us, are different things”.
It comes back to trusting and believing in others’ experiences when they have the courage and vulnerability to open up and tell you how they really feel, and what is really going on with them. It comes down to not making assumptions, to giving them the benefit of your doubt, to recognising you are not an expert on their illness and the only people that are, are they themselves, and their medical teams.
Without more compassionate cultures, we won’t get people back to work
If we don’t create more compassionate cultures, then the government will not be successful in its efforts to support more people with disabilities back to work. After all, how would you feel if you were in pain, or discomfort, or dealing with a disability and your experiences were dismissed, ignored, stigmatised or invalidated?
I, for one, wouldn’t blame you if you did stay at home on the sofa watching daytime TV if the alternative was discrimination at work.
As Gashier says: “I don’t blame people who stay at home, to be honest, because it’s so hard to get a job in the first place, and then so hard to keep it, when you have any kind of condition. And what’s the point if you go to work and suffer more? I know plenty of other people like me struggling with these same issues.”
