3.3 Stigma and disclosure
Lack of disclosure and its relationship to stigma around disability came up in almost every interview. As mentioned at the start of this report there is a considerable gap between the prevalence of disability in society and what we know about representation of disabled people in the workforce of civil society.
It can be impossible to disclose disability because it feels so risky in a sector where there are very few visible leaders.
As highlighted in the literature review, disclosure of disability as a protected characteristic is a significant issue across employment regardless of sector. Underreporting is endemic and, in and of itself, continues to perpetuate the problem. If you do not see people like yourself in your workplace or in the leadership team, how do you know you will be accepted for who you are and what you need? Given the negative perception of disability in society and the systemic discrimination faced by disabled people, workplaces need to make significant, visible efforts to ensure employees feel safe to be their whole self. Simultaneously, for those who cannot hide the disclosure because of visible impairments, how workplaces speak about and respond (or fail to respond) to their needs is often an indicator of whether it is safe or of benefit to disclose to those with hidden impairments.
I didn’t feel comfortable disclosing my needs for a long time which meant that my career was held back, but I wasn’t in a position to advocate as I didn’t identify.
Munro’s 2019 blog series around diversity in the charity sector is an indication that the sector is struggling to be inclusive, nurturing and respectful to many marginalised staff, including disabled staff. The prevalence of stereotypes around what impairment means for productivity and capability in the workplace, combined with stereotypes and expectations around civil society chief executives somehow being ‘superhuman’, can make disclosure even harder.
It’s incredibly difficult {to disclose disability} because as a chief executive and leader you are expected to be superhuman and disability doesn’t fit with the image… I made the decision at the start of my career not to disclose my disability and being a CEO makes it difficult to change that decision.
In order to increase disclosure, more needs to be done to challenge the societal view of disability and impairment as solely a deficit identity. If the person is presented as the problem rather than societal factors, individuals will not choose to engage in any negative construction of themselves. The social model of disability which places the emphasis on society to change rather than the individual is key to increasing disclosure because it reframes why someone is disclosing. Rather than to highlight potential deficits, negative impacts or needs, disclosure becomes about having needs met so that you can excel in your job.
There is a hidden versus visible impairment difference to disclosure. When you have visible impairment, you don’t have a choice about disclosure but that puts pressure on you because you don’t want to look like a failure.
The consequences of disclosure in the sector as it currently stands leave many disabled leaders feeling pigeonholed or trapped in working for organisations related to their identity. A number of our interviewees identified not being taken seriously outside of the disability space and not having their skills as leaders valued or recognised.
Society doesn’t value disabled talent. We are only ever asked about disability, not things that relate to being a CEO like managing staff and finances.
Another issue that emerged in the interviews around disclosure related more to the role of CEOs as managers. This has knock-on effects for disclosure at different levels of the organisation, individuals’ ability to stay in their job and to progress, and therefore disability inclusion. Many of our interviewees identified working with and managing staff with health conditions and impairments who either minimised their needs, rejected the disability identity or didn’t know what they needed in the workplace to thrive. This presented considerable challenges in terms of wanting to be supportive whilst not having the tools or knowledge to manage that person and their needs. Creating and facilitating workplace cultures that recognise and value talent, support and celebrate disabled colleagues appropriately, and challenge negative stereotypes where necessary, are key steps in creating a more inclusive sector. Employees at all levels need to be supported to recognise and raise their needs without fear of stigma or discrimination, and signposted to appropriate information on what adjustments might be useful to them, rather than seeing this as a problem with that individual. While there are many reasons for non-disclosure, an unintended consequence can be depriving managers of the support they need to realise inclusion. On managing disabled staff:
I didn’t know how to support her and she didn’t know what she needed. There was nowhere to go to ask for help.
This is heavily connected to the confusion that surrounds who disabled people are, because if somebody doesn’t understand who is considered disabled by law, they may struggle to know whether that term applies to them in order to disclose.
One way to look at enhancing disability inclusion in the sector is to consider whether the conditionality of disclosure is really required in order to make things accessible. If we plan for and anticipate diverse leaders attending events and other engagements with the organisation, then both the need for disclosure diminishes while simultaneously supporting more people to access the space. This does not mean covering specific, technical needs even if they have not been flagged as required, but rather simple measures such as ensuring venues are accessible and including accessibility information as standard, providing quiet rooms, ensuring clear routes to entrances, exits and facilities, and including recording and closed captioning for online events as standard.
