In 2019, Business Disability Forum conducted an extensive piece of research into people’s experiences of using and managing workplace adjustments. In this article, Business Disability Forum’s Head of Policy and Research, Angela Matthews, discusses the findings of the Great Big Workplace Adjustments Survey and invites you to take to part in the 2023 survey, which is now open.

Being ‘well’ at work

People decreasingly associate being ‘well’ with their workplace, and instead, too often put themselves ‘on hold’ during working hours. In fact, according to ‘Stress Statistics UK: 2022’ conducted by Champion Health, just 9 per cent report low levels of stress while they are at work. Conditions often cited to us by employees that are causing stress include a lack of flexibility, commuting, unclear instructions or expectations from managers and senior leaders, unmanageable workloads, and working environments that just do not suit everyone all the time.

Then imagine having to explain a life-changing diagnosis to your manager or telling your HR adviser that you can no longer do your job in its current way. And imagine that you have been trying to keep this to yourself for months, more than a year even, because you dread how your employer will react. And then, when you do tell them, the next hurdle is discussing what can be done about it. And your manager is stressed and time-poor enough as it is. And would they even know what can be done about it; after all, you yourself can see how unclear new processes and instructions are communicated by leaders. You are working up to having this discussion with your employer, but all of those ‘unknowns’ and assumptions that you go through in your mind every day are just too much. And yet they are enough to make you think ‘I won’t say anything at all’.

This is common. At Business Disability Forum, we knew it was happening in workplaces, and we knew it anecdotally from the conversations we have each week with employers. But we didn’t have quantitative insights to substantiate it further. Therefore, in 2019, we developed the first Great Big Workplace Adjustments Survey to put some numbers to the experiences and to reach more employers, managers, and senior leaders than we had spoken to before. We gathered views of 1,200 employees. This is what we found.

Life changes

Many disabled people become disabled or acquire a condition during their working life. Actually, for 42 per cent of survey respondents, they became disabled while working for their current employer. Behind this was the fact that many people do not think about having such intimate and personal conversations with their employer until something in their life happens – a new diagnosis, a sudden injury, an accident – and then they begin to think about how kind and supportive their employer might actually be if they were to explain what has happened and how their working lives need to change as a result.

It’s not always about getting new kit, a new chair or some assistive tech. Sometimes workplace adjustments to the working environment can often require some intimate, personal explanation – I can no longer use the toilet by myself, I need a washroom where I can empty my catheter and change my underwear with more space, I now need personal care at home so I might not be able to be at work for 7:30 am.

But the right response from employers – a manager, HR team, or inclusion team – is a pivotal part of the experience of becoming disabled, and it is also crucial for how the employee feels about their future in that organisation. Significantly, 34 per cent of people who considered discussing adjustments with their manager chose not to do so because they were worried about how their manager would respond. That’s a lot of people in our workforces who are ‘keeping quiet’ about what could help them do their job better. Not only are employees missing out here on being comfortable and working well, but so is the employer if they have team members who feel they cannot discuss what they need to show the talent they were hired to bring to the organisation.

Asking how people are and ensuring they can be themselves

We often see a lot of workplace adjustments processes that are reliant on the employee bringing up the topic of disability and adjustments. Yet we found that 43 per cent of employees who had thought about discussing adjustment did not do so because they did not want to approach their employer. The role of managers and leaders ‘noticing’ when someone is not ok, when someone is acting or behaving differently, or someone’s output or attendance has changed and then approaching employees to ask how they are and if everything is ok is huge. And this isn’t about workplace “processes”. This is more basic; this is just about human beings looking after each other.

There was something else going on in the figures too. Not only were employees worried about how their manager may respond to conversations or requests, 31 per cent did not request adjustments because they thought their colleagues would treat them differently. It was clear that if ‘being ourselves’ is any different to the ‘majority’ or what is the ‘norm’ of those around us or what is seen or ‘allowed’ in the working environment, employees are feeling ‘locked in’ to being silent about what they are struggling with, what is happening in their lives and, of course, what would help them feel and do better at work.

Ultimately, these figures are showing that, even amid the ever-emphatic workplace inclusion and culture change agenda, people are still trying to fit into something they are not to save harassment, being treated unkindly or – as our research showed – being perceived differently. It is what CMI’s research titles ‘The Everyone Economy’ calls the “perception-action gap”, and our research shows this still remains real. Employers are saying great things, but experiences are not necessarily being changed and improved as a result.

Overcoming the worry of conversations

As we have seen, employees put a lot of thought and emotion into deciding whether to go through with approaching their employer to discuss their condition and adjustments. But we frequently hear from employers, “If only employees would ‘push through’ their worry and initiate a conversation with us, then we could help”. Well, our figures show that’s not entirely true. Or, more accurately, managers do want to help, but organisations rarely equip them with the right information, skills, and processes to support their employees well. The figures told us that 20 per cent of managers did not have knowledge of their organisations’ workplace adjustment process and, worryingly, only a third of managers strongly agreed that disability inclusion and workplace adjustments were a priority to their senior leaders.

This was ‘felt’ in the experience of those who had decided to have that conversation with their manager and request adjustments. Only 32 per cent of employees got their adjustments within a month of requesting them; in fact, 9 per cent of employees waited between 1-2 years, and 8 per cent waited more than 2-4 years to get what they needed. That’s a long time to struggle, be stressed, be worried, and not have everything you need to do the job you need to do.

So, what’s taking so long? Basically, poorly designed processes and ill-equipped managers (through no fault of their own). Many respondents were specific about a common part of the process that held up delays: occupational health referrals were one example (11 per cent of respondents said this was the cause of delays to getting adjustments in place). Ultimately, employees cited how stressful the process to get what they needed was; the phrase “it was a fight” or “a struggle” came up often. Some felt that the process had not allowed them to “be heard” or the process required them to “convince” or “prove” to their employer that they ‘really do need’ adjustments. In fact, only 42 per cent of employees did not experience any difficulties with the process.

So, it’s generally a long, stressful, ‘clinical’ process which puts the ‘burden of proof’ onto employees to evidence their needs. This doesn’t sound like inclusion, and neither does it sound like a process designed to enhance employees’ well-being.

What makes us ‘well’?

Respondents also gave us the answers to what being ‘well’ looks like. Employees told us the appropriate workplace adjustments helped them stay in their job and made them more productive (80 per cent) and they enjoyed their job more now than before they had adjustments (60 per cent) – and managers agreed and themselves saw the difference when adjustments were (finally) in place.

Reading through the survey responses gave the feeling there remains a fundamental unease about difference; that’s not the difference that ‘disabled people’ bring, but the understanding that everyone is different to one another. The overreliance on employees needing to get medical evidence from a medical or therapeutic professional just to ‘confirm’ who they are and to endorse that they ‘really are’ being truthful about who they are and what works for them says to employees who do or think differently ‘we do not trust you’. The evidence collecting also takes up time, so adds more inefficiency to the process. Therefore, not only does this approach not make business sense; but it also implies a fundamental discomfort with diversity.

The 2023 survey

Our new survey is currently open and receiving responses. This time we are delving into the issue of identity more, and we are looking at how often disabled employees feel their well-being is impacted by how they are treated and supported (or not) at work. We are also replicating these topics for disabled people who are newer to work – those who have had support and adjustments at university and have moved to work during the last five years. We will undertake a more intersectional analysis of some of the questions alongside us continuing to hear that the experience of disability at work is not ‘one’ experience but is instead influenced by other ‘characteristics’ of our identity that we ‘bring to work’ with us – our race, our social background, expressing our faith and what we believe in, our gender, or how assertive or confident a communicator we are.

Essentially, being ourselves – and feeling safe to be ourselves at work – is key to how well we feel at work. Being in a culture where you are constantly being aware not to reveal important parts of who you are to your manager or your colleagues and causing your mind to worry causes physiological reactions that, in turn, cause us to hold stress in our bodies whenever we are in those environments.

“Safety” is something we are used to hearing in tightly managed or potentially threatening contexts – ‘health and safety’ in the workplace; when we when are in a hostile society or social situation; and, of course, “safe” was a term communicated daily via our news and media channels during the pandemic that referred to ‘not getting unwell’ with covid. But for employees in our workplace, safety is somewhat simpler and more organic than it referring to avoiding a life-threatening situation. Here it refers to the harm the stress caused by feeling you need to be silent – the harm done by people not being allowed by their workplace to work in the way that suits their body and everything they are. It is why more than one employee told us in the Survey that getting adjustments to work their way was an endorsement from their employer that they can just ‘be me’ – and that “saved [their] life”.

The Great Big Workplace Adjustments Survey 2023 is open until 23 February on Business Disability Forum’s website. It is open to anyone working with a disability or long-term condition or managing someone with a disability or long-term condition. We look forward to hearing your story about being yourself where you work.

Angela Matthews
Head of policy and research at Business Disability Forum

Angela leads Business Disability Forum’s policy and research team and specialises in UK work, health, and disability policy. She is an adviser to and research partner on several academic research projects related to health, disability inclusion, and inclusive employment.

Angela regularly contributes to HR and disability ‘lifestyle’ publications. She has appeared on BBC Radio 4, speaking on topics including women’s work and care ethics, and the disability employment gap. Angela has given evidence at various Parliamentary Select Committee inquiries. Angela often brings her own experiences of work, health, personal and social care, and disability benefits to her speaking activities.