Invisible Disability: Disclosure and Becoming Visible in the Workplace

Despite the many negative ramifications the pandemic continues to have for people with disabilities, it did provide a glimmer of hope for many. When new ways of working were quickly unfolded in the light of Covid-19, we were hopeful for more lasting systemic changes to our working lives – from adaptable ways of working, to how we view illness and recovery at work.

For those of us with invisible disabilities – defined as physical or mental impairment that has a substantial and long-term negative effect on your ability to do normal daily activities – the conversation feels like it’s opening up for us more, too.

People with disabilities make up a significant proportion of the population globally, with figures in both the UK and US at 20% of adults. In the UK, estimates from Leeds University place the number of disabled adults with invisible disabilities at 70%.

However, statistics on people with invisible disabilities at work are scarce. A historical culture of silence in the workplace means that many people with unseen disabilities just aren’t talking about it.

According to a 2017 study by the Centre for Talent Innovation (now CoQual), which looked at white-collar workers in the US, only 3.2% of employees disclosed their disability to employers, despite the actual number of employees with disabilities found by the study to be 30%.

A 2010 report by British charity Disability Rights UK looked at senior management with disabilities and found that 75% of those with disabilities that could be hidden at work did so “sometimes” or “always”. People with mental health conditions were found to be nearly four times more likely to be “open to no-one at work”.

Data holds the key to improving representation

A huge tranche of disabled workers is invisible in the data we currently have – something that is recognised by The Valuable 500, a global organisation of 500 CEOs that is working to drive lasting change to inclusion in the business world.

Addressing this “severe lack of data” is one of their five manifesto aims. Crucially, they note that participants must feel that any self-disclosure is safe.

Of course, disclosing disability is a highly personal choice, and one that can feel scary in workplaces that haven’t fostered an open and communicative culture.

I can attest that disclosing and asking for accommodations can be hard. It is extra emotional labour that takes a toll, especially when having to talk about – often repeatedly – personal health issues, with managers who may or may not have experience and training in the area. I’ve often felt that I had to demonstrate exceptional results at work to show that I deserved to have my needs taken into special consideration.

On the other hand, the emotional cost of covering up one’s everyday reality as a disabled person is significant. Living in secrecy isn’t good for anyone’s mental health. Statistics from the CoQual study also indicate that employees who feel able to disclose their disability status feel better at work, reporting fewer feelings of anxiety and isolation.

It’s important, too, to think about the chances we are given for disclosure. It is an all-too-common story that people are not given the opportunity from the get-go during the hiring process. This means that many people face having to make disclosures under their own steam – something that often only happens when they reach a crisis point and need to discuss why they are struggling at work.

Giving a voice to a silent C-suite

There is a historical culture of silence at C-suite level when it comes to talking about lived experience of disability, too. The Valuable 500 is working to “break the silence” in the C-suite, after it found in 2021 that no FTSE 100 executives or senior managers have disclosed a disability.

They place transparency at C-suite level as a key building block in transforming work cultures from the top and driving self-disclosure throughout all levels of a business. This is something echoed by Rachael Kinsella, Editor-in-Chief at iResearch Services, who says: “Transparency needs to come from the top first for other colleagues within the business to be able to take notice and to provide a safe space to have meaningful and helpful conversations. It needs to be embedded into an organisation.”

Progress at last?

However, she noted that the landscape is quickly changing, especially over the last few months. “Momentum has really built over the last year, and I’m noticing more people speaking out,” she says. “A year ago, I would have been surprised to see anyone talking about having an invisible disability on LinkedIn, for example. That has changed, but slowly.”

While disclosing isn’t a legal requirement by any means, access to accommodations under the Equality Act 2010 in the UK are dependent upon disclosing your disability. Many disability advocates also see self-disclosure as an empowering step people can take to actively start changing workplace cultures.

Making the invisible visible

The Invisible Disability Project (IDP) is a global media project that aims to interrupt the “invisibility” of unseen disability. It positions disclosing disability and talking about the realities of everyday life as an act of self-advocacy, which places disabled people in the position of speaking up for ourselves rather than being spoken for by others.

IDP also publishes resources on radical allyship, a key way of driving cultural change that doesn’t solely rely on disabled people taking on all the work of disclosure and self-advocacy. Radical allyship posits that everyone has a hand in challenging oppressive systems, and non-disabled people can and should take an active role in listening to and speaking alongside disabled people.

Practically positive

In the business world, this could be the difference between a corporation passively donating money to disability charities, versus actively looking at its own workplace culture around inclusion. It is the difference between seminars about disability and inclusion, compared to actively listening to people with disabilities about their access and inclusion needs.

Rachael also notes that business leaders are rapidly picking up on the need for active inclusion strategies, asking questions like: “We know we need to be talking about this. How can it be meaningfully followed with action?” It’s a step in the right direction.

She adds: “Firms that are doing well in making workplaces inclusive for disabled people are demonstrating through their thought leadership what their purpose is and how they are creating a more inclusive environment for everyone – and, crucially, they’re doing something about it. It is encouraging that more initiatives are getting off the ground within businesses themselves as well as industry groups challenging the status quo now, but there is still a long way to go and multiple issues to be addressed.”