To Disclose or not to Disclose

Sarah and Pk discuss the issue of disclosure. We define disclosure, highlighting that disclosure can apply to more than just disability but other facets of identity as well. We share what makes us feel safe to disclose and what things to look for when trying to disclose and how companies can encourage environments that encourage disclosure. 

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Transcript

Simply Equality Podcast Transcript

Episode 3 – To disclose or not to disclose

Sarah and Pk discuss the issue of disclosure. We define disclosure, highlighting that disclosure can apply to more than just disability but other facets of identity as well. We share what makes us feel safe to disclose and what things to look for when trying to disclose and how companies can encourage environments that encourage disclosure. 

[Intro music plays – upbeat piano music]

Pk Kulasegram

Welcome to another episode of the Simply Equality Podcast, the podcast that seeks to foreground the lived experiences of disabled and LGBTQ plus people.

On today's episode, we'll be doing something a little bit different, and this will be mostly focusing on resources, and we'll be discussing the topic of disclosure before we get stuck in: Sarah, would you like to introduce yourself? And then I guess I'll introduce myself.

Yeah.

Sarah Stephenson-Hunter

Great to be here again. I’m Sarah Stephenson-Hunter. Pronouns are she/her. And I'm one of the co-directors here at Simply Equality.

Pk Kulasegram

Brilliant. And I'm Pk. My pronouns are they/them, and I am the other director at Simply Equality. So I guess let's get stuck into things.

When we talk about disclosure, both in terms of queerness and disability. What is it we're actually talking about Sarah?

Sarah Stephenson-Hunter

I mean, that is a great question. And I and I would. Just say before we delve into that, you know, I've spent 15, years working in this area. And disclosure, it's just- it always comes up.

It's such a huge topic. So I'm really, really pleased that we’re getting to address this.

But for me, disclosure is a bit of a weird word. You know, you can think about it like coming out as well. But disclosure is about disclosing- telling somebody, that you- you know - in terms of queerness, are a member of the LGBTQ+ community.

or in terms of disability: that you have a disability.

And we'll get onto this in a bit, but I guess it's a really interesting starting point from: “why do we actually need to disclose?” 

But I know we're going to dig into that later. But just as we’re reflecting on that word ‘disclosure;. It really is a fascinating thing for me. Pk, what does it mean to you?

Pk Kulasegram

I think, as you kind of say, there's that interesting thing, because often you hear about it in terms of service providers or in the workplace, you know, when is the right time to disclose from an HR perspective?

And it is that whole telling people essentially about yourself. And we often hear about it in a disability context. But there are lots of other facets. And I like what you said about coming out and it being almost a form of coming out, because realistically, that's what it is.

And disclosure, I think to me always sounds a bit clinical and removed and like, ‘Oh! Can you disclose?’ And I think there is also- in terms of the importance of language in the work that we do, something to be said for the fact that it does sound clinical and it does sound like.

There is sort of, I guess, an undercurrent of something almost to be ashamed of, but perhaps that's just like a connotation that I have with it, rather than an actual thing that most people would feel. And we will, you know, talk about this. 

But there is always such a focus on a disclosure, and it really stems from this idea of, ‘oh, if we don't know about a thing, we can't help you. And therefore, you need to tell us so that we can help you.’ And I do think that misses the point of inclusion.

Sarah Stephenson-Hunter

I like what you said there, and I agree, that whole thing of disclosure sounding very clinical. And it is about, you know, why- why- why should I have to disclose? What should I have to disclose? Why should I have to tell? In the case of disability and -we don’t believe this but this is often how it's framed- why should I have To tell somebody that I have a disability, a health condition that means I'm the special one, and I need the special support or adjustment?

Obviously, in an ideal world, we would have sort of, you know, inclusion by design. That's the sort of thing we're working towards. But I think in the current context this discussion around the disclosure is still needed because we- a lot of the work we do is about workplaces and how can they create environments where people feel able and safe to disclose so that they can then get the appropriate support they need? 

Pk Kulasegram

Yeah. And I think that touches on the kind of crux of the issue, right? Which is in the work that we do, we're trying to aggress a ve- address a very reactive approach to inclusion and that, you know, is based on disclosure.

So once you've told us about something, then we'll do something about it rather than being proactive. And it's always going to be more difficult to react to things rather than to have just built it by default.

Because, like you said, in an ideal world, you wouldn't have to be like, oh, I'm queer, and therefore like, or I'm neurodivergent, and therefore I need things written down because it would just be a matter of course, of ‘oh, following every meeting we follow up with a written summary. Does that work for you?’

And that's a very different conversation.

But I think the thing I wanted to come back to is what you said about safety, because this is often what gets missed when we're talking about disclosure, which is, know, people ask the question, ‘how can I get people to disclose?’ or’ what's the right time to disclose?’

what I'd like to do, I guess, is like, share kind of our own experiences and talk about one: the fact that it is a safety issue right? Because if you have the option… if you are someone like me who- most of my disabilities are non-visible. Because I'm not trans feminine but trans masculine, I get read as a man ,so I don't necessarily have to disclose that I'm trans if I don't want to, I can- I have the privilege of keeping that to myself, although that gets confusing in terms of obviously I can't update gender markers on birth certificates and passports. So at some point I will have to.

But before we even get to the stage of disclosure, there are signals that I'm personally looking for to be like, ‘is this someone who is safe to come out to about being neurodivergent or disabled or trans?’

Sarah Stephenson-Hunter

That's why we specifically focus on that intersection of disability and LGBT. Because it a really, it's a really interesting dynamic.

I mean in my case if you look at me you would see that I have some sort of visual impairment. So my eyes don’t open. So I probably look like I'm asleep all the time. Which, which I'm not. But people will see that if I'm out and about, they might see the white cane, sort of be like ‘okay, they’re blind.’ You know, I can't hide that. 

The transness depends on the context. So you know, I am Sarah, I am female, but I'm quite tall, my voice still isn't where I want it to be. And so sometimes I will be, you know, people will- I won't have to disclose the fact I'm disabled because people will see the blindness. They may or may not read the transness, but then even that is just a certain part of my identity, because in terms of my disability.

You know, mine all stems from a childhood type of arthritis. But you wouldn't know that from looking at me. You know, I don't have any other walking aids. My mobility is generally good in terms of the arthritis. You wouldn't see that I've had problems with mental ill-health in the past. You wouldn't- you wouldn't get that from looking at me.

So it is about- when we talk about disclosure- it's about, what- what is already disclosed for us just by us walking into a room or being present in a in a certain situation. But what are the things that people may not know that we therefore, we may feel or an organisation might feel we need to disclose?

Pk Kulasegram

And this is the problem, I think fundamentally with disclosure is how do you know what is relevant? Right? Because similarly, like you can't necessarily see that I've struggled with mental ill-health before because it's, you know, I don't have a neon badge on my forehead that says, ‘hi, I can be mentally unwell sometimes. And that’s delightful for everyone that I'm managing’ or like I don't have something that… 

You know people have this misconception of, oh, disability looks a certain way and it and it sounds a certain way, right? And it just doesn't.

Sarah Stephenson-Hunter

Well, if you- if you get us two in a room, look at us two. We’re both disabled. But boy do we look different!

Pk Kulasegram

We do.

I mean, it's the delightful thing of if we’re walking down the street with you with your, like, height and me with my distinct lack of height. Like, I'm five foot three and three quarters, maybe, maybe five foot four on a good day? And you're, like, easily a foot, sort of taller than me.

And we walk side by side. And it's always funny because people, you know, you might brush against them with your white cane and they jump about a foot in the air, and then they whirl round to sort of give you a telling off, realise you’re blind and scarper into the distance with their tail between their legs.

But yeah, I think realistically, yeah, it's not as simple as a ‘Cool, I tell you that I'm disabled.’ And also what people forget in terms of disclosure is how often disabled, queer people are expected to disclose as just a matter of course.

And some stuff people actually don't need to know about.

But it's really difficult, I guess, as a disabled, as a queer person, kind of striking that balance of these are intrinsic to who I am. And some of these elements need support that is about, you know, those disabilities.

But also when we focus on this, ‘tell us about your condition.’ I think we miss ‘okay, but what is the support that you need?’ Because you can have two people who have the same- who maybe you can have two trans people, for example, who disclose that they're both trans and they have very different needs.

And in a workplace context, you might be like, ‘oh, what needs to trans people have?’ I don't know, to pee safely and not get harassed is one. But you also might need time off, you know, appointments to monitor your HRT.

If you are a trans person like myself or other trans people who are having surgeries, then you will need time off. Depending on kind of which surgeries those are, the length of time will need to be different. And again, all of that will depend on the individual trans person.

And so having- saying, ’oh well, we can't help you if you don't tell us.’ well, that is true.

If you also have a policy that is ready to go, which is just we give time off for gender affirming care. That's as simple as it needs to be. And then people don't have to disclose stuff that may not be safe to disclose in certain workplaces.

Similarly with disability, if you're like, ‘oh, well, this- these are the adjustments that we've given to Dave, who's autistic, and he works in marketing and he's found they’re really great.’

Great. That might not work for me because I have very different needs.

The question that HR comp- that HR needs to ask, that employers need to ask is: how do we encourage people to disclose? And also how do we create an environment where if someone doesn't disclose, they can still be supported? How can they create an environment where people feel safe to disclose?

Sarah Stephenson-Hunter

I mean, obviously, I've got some thoughts I don’t know if you want to start off, Pk?

Pk Kulasegram

Yeah.

So I think it's about remembering that just as much as sort of HR and organisations are looking for answers to questions; your candidates, your employees are also looking for those answers.

So as someone who has multiple kind of marginalised identities, there are things I am always actively looking for to check: is this a safe space for me to reveal x, y, z about me?

So let's say, I’m meeting an organisation with individuals who I haven't met before, and therefore I'm not sure what kind of views they hold. One of the first things I will do is actually check for pronouns in sort of email signatures. Depending on the level of meeting, I might also go on to their social media accounts- if they've got publicly available social media accounts- and see what kind of stuff they're posting.

And it is important for organisations to be aware of the fact that we're all under immense scrutiny. So if I see someone high up within the organisation or someone in the team that I will directly be working with, potentially posting a lot of ableist content or reposting a lot of transphobic content, then for me, I've already been like, okay, this is not a safe place. I'm never going to disclose because that's going to put a target on my back.

And so that's just one of those things is- I think organisations do need to be aware of: what is the message that we're sending to people around us, you know?

And obviously there's nuance because people should have a right to a personal life. But I think you can also make clear that this is a personal opinion. And if it's at odds with organisational values, then the organisation does need to kind of have a think about it.

Sarah Stephenson-Hunter

I think, I would definitely agree. I think certainly, if you're outside an organisation and you're looking for, applying for a role with them, then certainly, I would definitely do their checks: you know what is their EDI? Does their website have EDI mentioned? Do they have an EDI policy? Do they have an EDI team? Do they have disabled or LGBT staff networks? What are their key leaders saying on social media?

So I think, there's all sorts of things that can help if you're looking at- but what about what about once you're in the company? Let's say, you know, you're an existing employee, what can organisations do to then show existing staff that it is safe to disclose?

Pk Kulasegram

So I think having those - having effective policies that are not just written down, but also lived out.

So, for example, if as an organisation, you have a paid disability leave policy and it's great, it's shiny, you can claim off time that is paid if you need to look after yourself for a disability.

If you talk to your managers about it, they haven't heard of it or they don't know how it works or the process of accessing it is, I don't know, incredibly difficult and time consuming, then you're already kind of creating that disconnect between what is written and what is espoused as values versus what our actual culture is.

And again, I think, yeah, paying attention to the culture of an organisation. So if I'm in an organisation, I'm listening to the kinds of conversations that are going on around me.

You know, if you're in the office and even if you're working remotely, you still get a sense of an organisational culture, you know, because inevitably on meetings, there's usually some kind of banter or chat.

And if you hear people consistently make ableist remarks, even if they maybe don't realise it; if you hear people parroting sort of anti-trans or anti-LGBT talking points… Even basic things like, just asking questions, how does your manager respond to you asking questions?

Are they open to you just asking stuff, or do they kind of shut things down? And that's a really small example and a small kind of thing. But it tells me a lot about whether this person is going to be safe to talk about disability, because if they're getting flustered by me saying something like, “oh, but why does this process work the way it does?” And they get to sort of go, “well, it just does.”

Am I going to disclose that I'm neurodivergent? Probably not, because that person doesn't make me feel safe. I guess for you Sarah,  what do you look for when you're in an organisation?

Sarah Stephenson-Hunter

I mean, just on your last point, I literally, I was speaking to somebody only yesterday. They’d had their sort of mid-year review, and literally the words were something along the lines of: “Oh, your challenging nature and defensiveness doesn't suit the values and behaviours of our organisation.”

And what that referred to was that when they were told in a Teams chat on a meeting, you know, “our company has decided X, Y, and Z from now on.” They would be like, “well, okay, why was that change made? What's the reason for it? Has anybody thought about this in terms of an impact?”

They were basically being labelled as difficult.

And I do know that this person is neurodivergent. They've never officially disclosed that at work. But I think for me, that's a key example, as you just said. Given that response to them just wanting to ask for  information about something. That's not- that's not giving them confidence to say, “well, actually. I have these neurodivergent conditions and therefore I need X, Y, and Z.”

That's just to sort of back up your point. 

But for me, what makes me feel safe to disclose? I think, as you say, it's, you know, how are things being talked about by my colleagues? Also a big thing for me is I need to be confident that when I disclose either a disability or the fact, I’m trans or some other aspect of LGBT identity that a) That's going to be treated with respect and, you know, dealt with appropriately and that action is going to happen.

Because too many times we hear from people - and I've been in this situation myself - where, you know, I've been vulnerable. I've told my manager or senior leader that look I'm trans or I'm disabled and therefore I need x, Y and Z. And they’re like, “Oh yeah, yeah, yeah, that's cool. That's fine. We'll make a note and things will be acted upon.”

And then time and time again, you don’t get the adjustments you need, or you have to keep reminding them that their trans policy says that I should have time off to go to trans-related appointments.

So I think for me, the big thing is: if you want me to disclose this deeply, sensitive information, then, obviously, is it going to be treated in accordance with data privacy, GDPR, etc?

That should be given. But even then, that can sometimes be [Sarah chuckles] lacking in some organisations. But more importantly for me: is something going to have to happen?

Am I still in three months time going to have to say, “well, I've told you I was autistic. And yet I'm still not getting summaries of meetings afterwards.” Or “I'm still being told I have to put my camera on and a meeting.”

So it's the sort of the “so what” factor for me. So if I tell you this, what's going to happen?

Pk Kulasegram

Yeah.

And I think that's a really important point to notice- to note as well. Because realistically, people are always watching what's going on around them. And like, people in workplaces talk to each other, and whether that's remote talking over Slack or whatever.

But generally and especially if you've got an established staff network, it's really important to be mindful of is there a disconnect between “cool someone has told us that they need reasonable adjustments and we have not done that.”

And if you hear the same story over and over again, why would you disclose? Right? If you hear people saying, “oh, well, I told my manager I was Autistic and actually now I'm being sidelined for jobs because they've assumed I'm incompetent.” Or “I told this, this colleague in this um department that I'm trans and now they seem to actively avoid me.”

Realistically, no, you're not then going to disclose.

And I think what this points to is disclosure is – as anything else –a tool. And fundamentally what supports people feeling safe to disclose and also organisations not having to rely solely on disclosure is the same thing: which is genuinely creating- and this is, you know, something that we said a lot in the work that we do- compassionately curious cultures. Where instead of viewing oh, Henry has asked why we do something like this or how a decision was made as someone being difficult or whatever, it's actually this is a really good opportunity.

If we're anticipating that question, right? This is a good opportunity for us to have already prepared and to actually be very clear with ourselves about why we've made the decision, because as there’s – there is nothing more frustrating than being in the position of this change has been made and no one understands why, and it's causing a lot of frustration, and people are too scared to articulate that effectively because they're worried about whatever.

Often it's as simple as saying – I will acknowledge there are instances where you cannot share stuff for confidentiality reasons. But again, if you take a proactive approach to: people will have questions and you're prepared to say, this is what we can share this time, this is why we can share it and why we can't share more. That goes a long way towards building trust and a kind of culture where people feel able to raise issues. You know, realistically, this boils down to you need to look at the kind of culture you want to cultivate as an organisation when you're also trying to look at disclosure.

If you don't have people disclosing, that's telling you something about your culture in my view.

Sarah Stephenson-Hunter

And I know lots of organisations talk to us about, I don’t know, you know they have an X percentage of disclosure rate of disability and yet they know based on the incidence of disability in the population and the number of employees, they're going to have more. And they're like, “how can we get this number up?”

And I think that brings us back to – as we've been talking about – we have to think about why do you want people to disclose; what's going to happen when you disclose? You know, what would be the action?

And I think you're right, that whole thing of compassionately curious culture. I mean, you know, you can find out more about that on our website. We can perhaps talk about that another time. But it does come down to, you know, when we're talking about people disclosing to their manager; managers having these conversations.

And a lot of the time, I think one of the key issues we hear is that managers, leaders just don't feel equipped to have those conversations. They’re terrified of saying the wrong thing. And “what if I'm a bit clumsy in talking about disability when somebody’s just told me they have a disability. Or somebody’s trans.

We're not going to rehearse our compassionately curious framework here. But it is a really good tool. Because I think in essence, as human beings, we are curious. We do want to know about people. And there's nothing wrong with that.

But I think in this case, it's about thinking about: Why are you asking? Why do you want to know? What are you going to do as a result of finding out that information? And often, if we take that step back and think about what is it – what – we're trying to find out and what are we going to do as a result, that can really help us in these discussions.

Pk Kulasegram

I would definitely agree. And I think it is that thing of realistically, as organisations moving from “Oh, you are this,” – like putting people in boxes, which I know, like a lot of organisations need to do for reporting purposes. I will – that data is important. But I think if you can have processes that support treating people as people, it makes a lot of this easier.

So if you can, instead of going “what's your condition? Are you trans or whatever?” But just asking a very simple question of: what support do you need? And similarly you can ask that question constantly, of yourself; of processes.

And again, I will point out that you can have managers and senior leaders who need support for disability for, you know, LGBT issues. You might have a very high up senior leader who hasn't felt safe to come out about being in a lesbian relationship because of the culture of homophobia and- and so I think all of that - but in terms of disclosure, you cannot have disclosure without a culture that does something with it once you know.

So if someone has said something as simple as “oh, actually, my wife and I” and you- and it's clear that they're in a lesbian relationship, then are your people equipped to be able to be like, “oh yeah, that's nice” and just carry on a conversation like normal? Or are they going to get kind of flustered and feel awkward, you know?

And it is that: I'm so terrified of doing the wrong thing. And I think a key message, especially when it comes to topics like this is- to be honest- taking that step back and actually doing something, even if it's not perfect, is generally better than doing nothing at all. Because often when we do nothing at all, the problem gets bigger and bigger and bigger, and then we end up with grievances.

It's not good enough to be like, “oh, well, you didn't tell us this and therefore we couldn't help you.” Like if – I'm fairly sure there are actually several tribunals that kind of make that point: which is just because someone hasn't disclosed doesn't actually remove a legal obligation to make adjustments basically.

Sarah Stephenson-Hunter

Yeah. I mean, just to jump in on that. That's a classic one for me, because, you know, yes, I'm totally blind. I use assistive tech. And, you know, I've worked in some fairly large organisations.

Where you’d think statistically that's going to be more than me there as the blind and partially sighted member of staff. But the number of times I'll come across a system or a process, and people may have thought about how's the end user going to use this with assistive tech? They may- they may have thought of that. Although even then, most times they haven't.

But then I confront them, you know, I just confront them by the very fact that I'm there. I'm an assistive tech user. I ask the question, “Oooh, so is this accessible?”

And honestly, it's like I’ve asked, I don’t know, “when's the king coming to tea?”

“Oh. Oh, yeah. We never thought about that.”

And for me, that's just the classic of, the Equality Act says you have to have an anticipatory duty, so it's no good just saying, “Well, we don't have any blind members of staff, so we don't have to worry about making sure internal system for managers for recording leave or sick leave is accessible.”

No. You should do it anyway. Always a bit of a catch 22. But when people say to me, well, “we don't have any blind people.” It’s like, well, yeah there might be a reason why that is.

Have you looked at your working practices and your systems and how they are and whether they're accessible and have have you done any work on that? 

Sorry, I'm on a bit – I'm on a bit of a hobbyhorse Pk, but that has been my life’s journey.

Pk Kulasegram

Yeah. I mean, I think it is always that very frustrating thing of: “Oh, we don't have any of X people here, so why would we do that?” And it becomes a chicken and an egg situation.

And I know I've said it before, but a quote that always sticks with me, is that diversity is the byproduct of inclusion. And often, we focus on, oh, get the diversity in, you know, get more disabled people, get more people of colour, get more queer people, trans people, whatever. Like let's diverse – let’s have a working population that's reflective of the population around us. And that's never going to happen if you don't have a culture that supports that.

Because what happens is you then get people through the door and they don't stay because the systems are inaccessible, because managers aren't given the tools to either manage as a disabled person or manage disabled people themselves or to manage trans stuff, to have tricky conversations in the workplace.

Yeah, and I think, I guess to sort of bring it all back to that whole theme of disclosure and creating inclusive environments. Do you have any sort of top tips for organisations or people? 

Sarah Stephenson-Hunter

Oooh, gosh! I know we try not to do top tips but I think in this case there are some top tops. So I think - for me-  it’s making sure that if you say you want to have more disabled people, more LGBTQ plus people. Or any other marginalised identity working for you. Then okay, think about looking at your organisation from the outside.

What does your website say? What does it show? Does it represent the people that you, ultimately, you know, want to see you, work for you?

Do you support your staff networks so that, you know, if you're a member of that staff network, you see that and that helps you feel like, well, my needs are taken seriously. And if I disclose there's going to be support available. Do you have clear policies?

So if a manager, somebody discloses to them there's a – a flow of:  “well, that means I need to do this and do this and this and this action should take within that- that action should be taken within that time period.”

So I think those for me are my top tips. I don't know if you want to add anything, Pk?

Pk Kulasegram

Yeah. I think I'm gonna sort of do the drawing from a personal experience of, like, a time where I felt my disclosure was treated with sort of dignity and respect and actually, like, meant a lot.

And it was - and this will probably sound weird in the context - but the thing that sticks out to me was that my manager was able to say, “oh, I don't know a lot about that. I'll do the best that I can. What do you need?”

And that was way more meaningful than having someone who was just trying to pretend that they know. And I think there is huge pressure on senior leaders and managers to just be a font of all knowledge. And I think my biggest tip, both, as you know, someone who has been managed, who has managed, is get into the habit of being able to admit: “oh, I don't know that, but I would like to learn more” or “I would like to work on ways to support you.” “I don't know about that” be the end. Let it be the start point.

That's one of the most powerful things we can do, both as sort of disabled and queer people is just saying: “I don't know what support I need” because, you know, maybe I'm newly disabled or I'm at the very start of my transition journey or- and having that actually be okay, being okay with a manager who doesn't have all the answers but is willing to say, “well, I'll go and find out where to look for these answers.”

And so, yeah, I think that's my top tip.

Sarah Stephenson-Hunter

I think that's a really powerful top tip. We've touched on earlier about, you know, people get scared and they don't know what to say. And I think being willing to be vulnerable and say- say that is a- is a massive thing. So, drawing this to a conclusion.

I hope that our listeners have found this helpful. If you want to know more about the Compassionately Curious Cultures Framework we've talked about; if you want to learn more about how we can work with you to help create that environment for disclosure; if you're a manager who wants to move from awareness to action and know more about, you know, some of the specific issues around disability and LGBT inclusion, then obviously get in touch with us. 

There will be links in the show notes, but you can visit www.SimplyEquality.com And check out information. But otherwise hope you've enjoyed this episode. And we look forward to presenting another one. But yeah, thanks everybody.

Pk Kulasegram

Yeah. Thanks very much. And if you have ideas for topics that you'd like to us to cover in the future, do feel free to get in touch as well. Thank you all for joining us.

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