July 2021

Sharing personal information about disability and ill health and earning trust

July - Sharing personal information about disability and ill health and earning trust

The experience of disability and / or ill health and / or difference is not one that many of us would, if given the choice, invite into our lives. And yet it happens all the time. In fact, the majority of people with a disability (83%) will acquire their disability through the course of their working lives.

It can be enormously difficult to embrace a new identity or make sense of an entirely different route through life than the one you expected or planned for and to learn how to manage your impairment at work. And most people will have to do these things at the same time as wanting to continue to be their best at work.

This month’s theme is about exploring challenges of sharing personal information about disability and ill health and how organisations can earn trust to improve that. We will support you, as ERG / network leaders, allies and champions to understand and articulate the “five trust tests” that organisation’s might use to check they are ‘trust ready’ to support people to be bolder and more courageous in sharing their story of disability and / or ill health. And as ever we signpost you to some fantastic insights and learning content that you can absorb and pass on to your own networks. 

Learn, absorb and cascade.

Declaration and disclosure?

Let us start the month with a reminder. The words ‘declaration’ and ‘disclosure’ are so old school. And yet they are used indiscriminately to describe the process of people sharing information about disability, ill health and difference. Our advice? Just don’t use them. In fact, we would go one step further and suggest you exercise a zero-tolerance mindset to these words and create the organisational equivalent of a “swear box” if any colleague uses these words in your presence. Why? Because using these words betrays an outdated and unimaginative mindset. Suggesting disability is an experience that needs to be ‘disclosed’ conveys a deep-routed belief that the experience brings shame, organisational discomfort and an unwillingness to deliver workplace adjustments or accommodations. 

When did your organisation last ask your people to disclose their gender? Exactly, you wouldn’t do it because you are set up to accommodate different people needs. To do otherwise might suggest, for example that being a woman is inconvenient, expensive or distasteful. The same should go for disability.

It can be really difficult to make sense of a life experience that you would, if pushed, say you would prefer not to have. Working in an organisation that suggests that having that experience is a secret or a big piece of news is not where you want your organisation to be. Here are some suggestions about how to refresh your learning and apply to your role as ERG / Network leader, senior ally or champion:

1. Cascade the original 15 Big Ideas about how to improve data monitoring to your internal networks and internal disability evangelists: many of you will have read the original book that led to the launch of PurpleSpace. Secrets & Big News offered up 15 ‘Big Ideas’ for both employers & employees with disability to try. This seminal thought piece is one of the key reasons why we have seen such growth and investment in disability ERGs / Networks over the last 5 years.

However, there is little point in organisations encouraging people to share personal information about disability and ill health unless they have a very clear understanding about how to create the right circumstances by which people do that, as well as the individual benefits in doing so.

2. Be clear about the individual benefits of people sharing personal information: Check out these blogs and articles about the reasons why people share personal information and the challenges in doing so. They are rarely about wanting the company to do a better job with its monitoring process. These reasons are personal.

Read what it means for columnist Heather Lacey, to bring her authentic self to work and how she dealt with interview questions.

Read about the challenge of creating ‘disability pride’ through a study conducted by Oregon State University in 2017. It shows how those who self-identify are more likely to develop pride in their disability, a shift in thinking that can help build resilience and change attitudes.

Read organisational psychologist Nancy Doyle’s Forbes article “Bring Your Whole Self To Work! Hiding Disability At Work Is Damaging To Productivity: and how ERGs / Networks and the use of #PurpleLightUp supports the development of peer support and growth of community.

Listen to Damian Riley, Managing Director and Client Partner for Education Services at Capita talk about how organisations can encourage the sharing of information in our Spotlight On series.

If your organisation is serious in wanting to encourage people to share personal information about disability / ill health the best place to start in terms of the actions you take is to learn directly from your own people. Why not convene a small group of employees with disability who are open about their experiences and hold a podcast with one key question “what gifts have you brought into your life by sharing information about your disability with colleagues?” – then broadcast it to the organisation. Even better, get your CEO to introduce the podcast with the central message that they want everyone in the company to be able to bring their authentic selves to work.

3. Check out our “Five Trust Tests”: Last year our founding CEO Kate Nash in conversation with John Ameachi talked about the need for organisations to earn trust before they encourage their people to share personal information about disability and ill health. Which is why we have written a new PurpleSpace briefing paper called the “Five Trust Tests” – these spell out how an organisation can test its readiness to encourage people with disability to bring their authentic selves to work.

4. Join one of our three Peer Group sessions: meet your fellow disability ERG / Network travellers and discuss this month’s topic and what it means to you and your organisation. The dates are: 6th July, 13th July and 21st July.

5. Watch back our Earning It panel from #PurpleLightUp 2020. Senior leaders from Allegis Global Solutions, Shell and Tata Consultancy Services discuss with Community Business' CEO, Peter Sargant, how we can enable employers to ‘earn the right’ for disabled people to share personal information.

And finally…

When you next hear a colleague framing the process of sharing personal information as a ‘disclosure’ or ‘declaration’ action think about these three of our most favourite quotes:

First, from the writer Sylvia Plath “And when at last you find someone to whom you feel you can pour out your soul, you stop in shock at the words you utter - they are so rusty, so ugly, so meaningless and feeble from being kept in the small cramped dark inside you so long…..” 

From Ann Aguirre, “Once exposed, a secret loses all its power.”

And from Carol S. Dweck, “You can’t just declare that you have a growth mindset. Growth mindset is hard.” Try substituting the word ‘disability’ for ‘growth mindset.’ 

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