Why disclosure doesn't work

Emile Tompa:
Welcome everybody to this month's IDEA speaker series. Our regular host, Dan Samosh, is off this week so I and my colleague, Rebecca Gewurtz, are filling in for him. I am Emile Tompa, I'm the Executive Director of IDEA and Senior Scientist at The Institute for Work & Health. Hosting with me is Rebecca Gewurtz, Director of IDEA and an Associate Professor in the School of Rehabilitation Sciences at McMaster University. Please note we are recording this session, and recordings will be made available on our IDEA website, https://vraie-idea.ca/index.html.

For those who may not know about IDEA, it is a social innovation laboratory focused on helping create stronger and more diverse labour markets that includes persons with disabilities through knowledge to practice. And IDEA is an acronym for Inclusive Design for Employment Access. The laboratory develops knowledge informed tools and resources through what we describe as a co-design process with our partners. And these tools and resources help advance workplace capacity for recruitment, hiring, onboarding, retention, mentorship, and promotion of persons with disabilities across the full range of employment opportunities. Now before we begin, um I'd like to share a land acknowledgement that is, um, relevant to the IDEA National Office, which is in the Toronto region. So, the National Office of IDEA Social Innovation Laboratory is situated, on what has for thousands of years been the traditional land of the Huron-Wendat, the Seneca and the Mississaugas of the Credit River. It is still home to many indigenous people from across Turtle Island and we are grateful to have the opportunity to conduct our work on it. Please note, as I mentioned, that this acknowledgement is relevant for the Toronto area, however, since we are gathering for this meeting virtually, we suggest that you think about the communities in your respective locations as well. So, I'm going to pass it over to Rebecca to introduce the webinar.

Rebecca Gewurtz:
Thank you. So this monthly speaker series serves as an opportunity to hear the latest about current topics in the work disability policy arena, and learn about activities underway within and beyond, uh, the IDEA social innovation laboratory. During the last 20 minutes of the webinar, we will hold a question and answer period. We invite you to type your questions in the Q&A box at any time throughout the presentation and we will answer as many questions as we can. Our speaker for today is Mahadeo Sukhai, Vice President, Research & International Affairs and the Chief Accessibility Officer at CNIB, or the Canadian National Institute for the Blind. Mahadeo is also co-lead of IDEA's Hub 4, Inclusive Environmental Design. He also chairs an Accessibility, uh, Standards Canada technical committee that is developing an inclusive employment standard.

Mahadeo is the world's first congenitally blind geneticist and a leading expert on accessibility, including a focus on graduate and postdoctoral research training in science, technology, engineering, mathematics, and health care disciplines. Mahadeo is joining us today to talk about why disclosure doesn't work. Welcome Mahadeo, and over to you.

Mahadeo Sukhai:
Thank you very much Rebecca, um I thought it's, it's always good to actually have a bit of a provocative title for a session like this, um it, it's a pleasure to be here with everyone today. Um, I'm uh, I'm calling from, uh, Kingston, Ontario, which is the traditional territory of the the Huron-Wendat peoples, um, and I'm grateful to have the privilege to live and work and play on this land as a first generation, uh, newcomer to the space.

I'm going to share my screen now, uh, and uh, and, and we'll, we'll go through, um we'll go through a conversation for the next little while. Um, and we'll have time for conversation and discussion afterward. Um, as, as Rebecca indicated, the title of the, the presentation today is:

Why Disclosure Doesn't Work. Um I, I've subtitled it:

The Seven Barriers to Effective Accessibility Supports in the Workplace. Sort of riffing on the, the Dale Carnegie, um, and, and, uh, and Patrick Lencioni style titles for things like:

The Seven Habits of Effective People, and um, and Five Dysfunctions of an Effective Team, and so on, and so forth. Um there's a, there's a mock book cover on the right hand side of the slide. The book doesn't exist as of yet, um, but, but I, I actually do think it would be neat to write this up one of these days, and, and and tell this particular story. Um, my email address, which is simply my first name dot my last name, um is, is Mahadeo Sukhai, also on the title slide, so folks know how to get in touch with me.

Uh, I will acknowledge my affiliations, which Rebecca's already kindly done, um so, so my affiliation of course at CNIB, as, as, um, as hub four co-lead for IDEA, um, and Adjunct appointments at the Faculty of Business and Information Technology at, at Ontario Tech University, and Inclusive Design at OCAD University, and in the Department of Ophthalmology at the School of Medicine at Queens University, here in Kingston. Um, in addition to chairing the employment technical committee, I'm also the Co-chair of the External Advisory Committee on Accessibility and Systemic Ableism for CIHR, the Canadian Institutes of Health Research, and the Chair of the International Network of Visually Impaired Researchers and their Allies, or INVA.

I will make a disclaimer upfront, having told you where I come from and, and all of my affiliations, that the perspectives that I'm about to share with you are evidence-informed and evidence-based, but are actually my unique synthesis of that knowledge, and, and frankly don't reflect the position of my employer, um or, or any of of the other affiliations, necessarily. So, so this is, this is raw Mahadeo, um, and, uh and, and you, you either like it or you don't, um, and, and we can, we can talk about that later. Um, I, I will acknowledge though, all the work that was done, uh, in this space by my team the, the CNIB research and IDEA team, um, which is a disability-led, disability driven, disability focused research enterprise in the nonprofit space, um, particularly focusing on, on two pieces of work that were Accessibility Standards Canada funded. Uh, our inclusive workplaces research project that wrapped last year, and, and the accessibility competencies research project that's ongoing.

Um, I will acknowledge, uh, the ongoing work in IDEA Hub 4 with, uh, Jordana Maise,l and, and Jimin Choi, uh, and current and past members of my team, um, and an ongoing collaboration also with Dr. Johannes Boegerhausen from the University of Rotterdam School of Management that I will refer to in this presentation, um, as well as, uh helpful and ongoing discussions with Anley Lur from IDEA team, um, that have informed this work. Um I, I always find it interesting when we do the acknowledgements at the end of a presentation, when there's no time and, and we, we throw a slide up and we simply say, "I thank all these people, any questions?" Uh I, I think it's really worth it to, to just give the the collaborations their space and, and thank them upfront and um, not on this slide. And, and this, this was actually a, an oversight on my part, but not on this slide I, I would also thank Emile and Rebecca, who have been two very long, long-standing, very, very wonderful collaborators of mine since the very beginning of my time at CNIB. So, so my thanks to them as well.

Um so, so I'm, I'm going to, having dispensed with all of that, start with a statement, and it's in fact a quotation from Microsoft, and it's, "Accessibility should be built in, not bolted on."

And so, so where are we going to start this conversation? We're going to start it in the space of disclosure and the duty to accommodate. So there is a process for duty to accommodate. Some would call it a paradigm, um and, and it is a three-step process that involves the worker, or the job applicant, and the employer. Uh the first step is the workers' duty to inform, the second step is the employer's duty to inquire, followed by, after a review of of the available information, uh, the employer is then, um, is then obligated to uh, to undertake a duty to accommodate, provided that certain conditions are, are met. And if certain conditions are not met, then, then we we go into a different part of the process that I'll get to in a moment. This, this approach requires documentation, um, in order to, I'm going to use the term 'validate,' uh, the lived experience with a disability, or, or 'validate' the, the accessibility request that's been made. Um, and that documentation is, is medical or, or rehabilitation documentation that is effectively required to, to as I say, 'validate' the disability and, and the accommodation request.

There's a challenge, however, because a lot of, a lot of documentation that comes, unless it comes from a rehab professional, the documentation that comes from a medical professional is diagnostic information. And, and medical code of conduct usually, um, prevents the translation of diagnostic information to functional impact. Um, and so somebody's actually got to mediate that translation. Uh, larger employers will have occupational health and safety departments that are comprised of, of uh, occupational therapists, that will attempt to do that. Um but, but often what ends up happening is a lot of employers are, are trying to work out-- well, Dr Sukhai has bilateral congenital cataracts, with deprivation amblyopia, and translate that into functional impact in the workplace, which is a very difficult thing to do. Um, functional limitations are context dependent. They cannot always be inferred from diagnosis, and it's, it's really important to, to just understand that up front.

There is this thing that I alluded to a moment ago, called undue hardship in the duty to accommodate. So an employer can actually refuse to provide accommodations if uh, if, if the following conditions are met:

number one, the accommodations change the nature of the job to be performed; or number two, the accommodations will pose a safety or health risk to colleagues, clients, or patients; uh and number three, the, the accommodations are too expensive. This last one cannot be applied on its own, so, so you have to say that the accommodations requested pose a safety or health risk to colleagues, clients, or patients and, in order to provide accommodations that don't do that, it's too expensive. So that would, that would be how the, the, the, the third um, the third option here actually works.

You, you cannot go in front of a judge, if this goes to uh, if this goes to court, and say I didn't do this because it was too expensive, um because that legally is, is not that, that's, that's not going to help you. Um there's also these things called, bonafide occupational requirements, um, and they play into the duty to accommodate, um, around the notion of does, does the uh, accessibility support, or accommodation request, change the nature of the job? Um, so, so bonafide occupational requirements can actually be legitimately discriminatory against persons with disabilities. Uh and, and the way to actually figure this out is to use something called the Morin test, um, which is, which is effectively a legal test to determine uh, if a um, if a job duty, uh is discriminatory, and legitimately so, against persons with disabilities. For example, uh, if you are, um, if you are applying for a job to drive a bus, having a driver's license is not discriminatory. If you're applying for a job to work in an office, and that job says you have to have a driver's license, that may be discriminatory, depending on the specific nature of, of the job. Um, and so, so if, if, if an employer can legitimately argue in front, in favour, of a discriminatory bonafide occupational requirement, which cannot be accommodated, then undo hardship will, will apply.

All of this is, is really set up to balance organizational risk and employee benefit. Um, the policies that exist are in place to, to um, to mitigate the potential for organizational risk while potentially maximizing um, the benefits to an employee who who requires this, um, this this process to be put in place. But I would argue with you, that it is actually almost, by definition, an ablest-disablist framework. I'm going to define those two terms for you, um, one of which you might be more familiar with than the other. And so, ableism is the mindset of actively centring the ability to do a task, or tasks. Disablism is the mindset of actively marginalizing, or deprioritizing, the lived experience of persons with disabilities.

Um, and, and so, so if, if the, if, if we, if we consider a space where, where we actively say, you know, you must be able to do X in order to do a job. Then you are, you're, you're potentially in an ableist space, because you're prioritizing the ability, um, in prioritizing the ability, you're not actually actively saying, 'I discriminate against persons with disabilities,' but what you're actually doing is, you're saying, 'I, I will emphasize the ability to do something right.' And so, so if you think about, if you think about every job description that anyone's ever written, um, all of, all of the qualifications, and all of the essential duties are effectively all coming at things from an ableist perspective. You're effectively saying, 'you must demonstrate to me that, that you have the ability to do these things in order to get the job.' Right, um, so, so the, the, the job description is not actively disablist, but it is actively ableist. And, and, the duty to accommodate process, I would, I would actually argue with you, can be both ablest and disablist together.

Let's talk for a moment about workers with disabilities, because there are four groups of workers with disabilities, uh, and, and, the policies that exist in theory, apply to all of them, but in, in, in practice were really perhaps, only design, designed for, for some of these groups. So, so the four groups of persons with disabilities that are workers, could be a worker like myself, who was born with a lived experience with a disability, that's group one. Group two would be the worker who acquires the disability prior to becoming employed, specifically becoming employed in that particular job, but, but it could also be that the worker's acquired a disability prior to any employment history whatsoever. Group three is the worker who acquires the disability while working and, and so it's an on the job, um, worker acquiring a disability. And then, group four is, is the worker who acquires the disability um, while they are, while, while they're employed, but it's due to illness, injury, or accident, not related to the job, um and so, so it's not super clear on, on the slide, but I bolded the the last two groups to in-, to indicate that those are the two groups that, when we think about work disability management policies, and, and we think, think about, um, and, and we think about disability in the workplace, those are the two groups that tend to come to mind first. And frankly, pre-1970's really, those were the two groups that, that we were talking about related to disability in the workplace.

The notion of, um, someone with a congenital disability, or the notion that, that somebody who, um, acquired a disability prior to looking for a job could actually look for work, wasn't the thing until about 50 years ago. Uh, and so, so all of, all of the ancestral policies that were built in this space, were not built with those two, um, with those two use cases in mind. I will also argue that the duty to accommodate process, and I just, I just put the slide up again that illustrates what the duty to accommodate process is, so duty to inform, duty to inquire, and duty to accommodate, hinges on that duty to inform. And another word for duty to inform, is disclosure.

Disclosure is the practice of self-identifying as a person with a disability, which is considered to be synonymous with identifying an accessibility need. We will often call this self-identification within the disability community, because disclosure has a little bit of a weird connotation, um, a little bit of a medical connotation, um, it is considered to be a component of self- advocacy within the disability community. Um, and it is required for accessibility and accommodation supports, and education and employment settings, so accommodation requires disclosure, which means that accommodation then, is a reactive process. You, in air quotes, "need to ask for help." The human rights requirement behind all of this is the disclosure of need for accessibility support, and what that is assumed to mean, in practice is, again, medical or similar documentation of diagnosis or functional impact.

And so, so I ask again, a question that I asked before, which is, 'who translates between the two?' Because not everybody knows how to mediate those two languages. Disclosure is the functional route that a worker or a job applicant will take into the workplace accommodation process. It is, it is both an expected and an essential part of this process. And as I say, it is, it is a fundamental declaration, "I need help" in air quotes so, so how should this, how should, how should this work? The mechanism of disclosure, I think, becomes important in the disability, um, advocacy space and in, in the, in the employment coaching space. The conversation usually goes, 'What are you disclosing? When are you disclosing? How are you disclosing? and To whom are you disclosing?'

According to the human rights codes, what to disclose the duty to accommodate, again, refer--or sorry, the duty to inform, refers to the disclosure of a functional need, so for example, I use large print, or I communicate using ASL, or I need to flex my hours. In practice, often this gets attached to, I have a visual impairment, I am deaf capital D, I take medication, I have a young child, I'm observing Ramadan, or whatever right. When to disclose is also, is, is also something that gets brought up in, in the conversation about how to go through this process, a lot. So, so disclosure can happen in the cover letter, in the interview prep, in the interview after the job offer, the first day, the end day, or more to the point-- disclosure should occur, according to the way that the duty to accommodate process is set out, when the need arises. But there is a, again, there's, there's this tension between talking about what I need from a functional perspective, and talking about my diagnosis in the context of disclosure.

So if I'm disclosing, do I disclose one, do I disclose both, do I disclose, which, which, which way do I go in this teeter totter? Um, but then, what also leads to why so, so an employer will, will ultimately say, if, if I say, 'I need large print,' an employer will say, 'well why do you need that,' or 'why do you need ASL in every meeting,' or 'why do you need to flex your hours?' The intended sentiment behind this is, 'I need to know more, so that I can help more effectively.' And so, duty to inform leads to the duty to inquire, but then what ends up happening is, is that duty to inquire also requires the documentation. So, so that's a legitimization of the request, or justification of the request, as well as that proof of disability piece.

So, so, so, so, so let, let's actually talk about, is this a good thing, or not? So, Johanne and I did some work, uh, where we looked at, is disclosure in an interview a positive thing? So, so um, what we did was we, we looked at um, whether somebody disclosed against not disclosing, and against disclosing an environmental condition that has the same functional impacts as a disability in a virtual interview setting. So, for example, um, the way we set this up with our case scenario was, was the um, the, the job applicant was hard of hearing. They, they may have had difficulty hearing the question, um, because of, of that and, and so, so the, the environmental condition is, 'I'm sorry there's road noise in my, in, in the street outside my apartment, because there's construction work, so I wasn't able to hear you as clearly, because somebody's jackhammering something,' right.

So, so the, the three conditions tested were, no disclosure, I'm disclosing a, a disability, and I'm disclosing this other thing that situationally makes it seem like I have a disability, but isn't really, isn't really a lived experience. And, and when we did that, what we found was that disclosure of the, of the functional need of a disability in the interview was most likely to lead to hiring intent among hiring managers and feelings of trust and warmth and competence about the candidate in those hiring managers. So, so, so in the context of an interview setting, in this particular kind of scenario, um disclosure of a functional need was beneficial, much more beneficial, than, than no disclosure, um, and, and also more beneficial than, than a disclosure of, of a, an environmental condition.

But then, how does one disclose? Is there a phrasing that works best for disclosure? So what we also did was, we actually demonstrated some, some approaches to disclosure in an interview setting may work better than others in fostering, again, intent to hire and feelings of trust, warmth, and competence about the candidate in hiring managers. Um, so what we found, and I'll, I'll define these for you in a moment, what we found was that disclosure of functional impact actually led to more positive results than either ability first disclosure, disability minimizing disclosure, assistive aid justification disclosure, or a disclosure of diagnosis.

So let me define those, those five things for you. So, so um functional impact would be, see if it seems like I don't hear or misunderstood the question, it's because I have hearing loss. The ability first disclosure would be, I have hearing loss and it makes me a better worker because blah, blah, blah, blah, blah, blah, blah, and of note-- that's the one that that in the disability community we usually teach people to do. We teach people to do the, the I have a lived experience it makes me a better employee, because. Right, um, disability minimizing disclosure is, I have hearing loss but it doesn't impact my job performance, because. Right, assistive aid justification is, I have hearing loss and with these assistive aids I can blah, blah, blah, blah, blah. Disclosure of diagnosis is just, I have hearing loss.

So, so what we found was that, that functional impact disclosure, which actually basically says-- this is a situation that might impact my ability to participate and this is how, led to the most positive outcomes in the scenario that that we were running, here. Um, not ability first disclosure. Ability first disclosure actually backfired on people, right, it didn't work nearly as well. Disability minimizing disclosure backfired on people. Assistive justification backfired on people, um, and, and disclosure of diagnosis didn't didn't do anything, right.

So, so, so it actually does matter what type of disclosure one, one does in the interview setting, given this particular work. And again, um I, I will just note that, that ability first disclosure and assist of a justification are the two primary mechanisms that we tend to teach in the disability community when, when you, when you have employment readiness training that goes on within that space.

So the other thing about disability and disclosure is that context absolutely matters. You've got quality of lived experience, you've got severity of disability experience, you've got use of assistive technology, you've got virtual versus in-person, um, interviews, and work environments. And all of those things impact whether the conversation actually needs to happen in the first place, right.

So, when do I not need to disclose? Um, this is a fun one, because every time I, I, I talk to, um, I talk to folks who are who are in the, um, in, in the, in the process of, of employment readiness training, and I asked this question, when do you not need to disclose?, um a lot of time, a lot of times, they don't, don't get all the answers. So, so, the answers are when someone on the hiring team knows me, I don't need to disclose. So, so if there was a personal referral into the job and someone on the other end of the table actually knows who I am, I don't need to disclose, because they already know who I am. When I'm using assistive technology I don't need to disclose. If I walk into an interview, um, with a guide dog, or I'm using a white cane, or I'm using a wheelchair, or a scooter, or an as interpreter-- all of these things, all of these people, all of these aids actually disclose for me, and I don't physically have to say anything. Uh, the third one that people tend to forget about a lot is, is when my web footprint discloses for me, because it's on Facebook, or it's on LinkedIn, or, or you know I've, I've posted on X/Twitter ,or whatever it's called these days. Um, or there's something on Instagram, and, and in, in putting those things, and they might be totally social, but I've outed myself in a social setting, and my employer can go look that up, right. But I also don't need to disclose when I have no perceived need for accessibility support in the workplace. And I put that in there because that's actually what the law says, right. I don't need to disclose if I don't actually have any accessibility support need because I can figure out how to do this on my own.

When, when Johannes and I were, were staging the experiments I just told you about, we also did a bit of a deep dive into the disclosure literature and there, there's some fundamental challenges with the disclosure literature the way it's currently set up. First of all, the studies don't control for the method of disclosure, it's either disclosure-- yes, or disclosure-- no. But there, there isn't a, there isn't a case where disclosure-- yes, also looks at what methods would actually work properly, right. Um, and so, one group of studies looks at disclosure--yes, disclosure--no. One group of, one group of studies assumes disclosure-- yes, and then asks the question of which method works best. Um, we did both together, to, to avoid that, that particular barrier.

Um, studies do not control for scenarios where disclosure is not necessary, and studies also assume that hiring committees don't get surprised by disclosure. So, what do I mean by that? And, I'll come back to what I mean by that in a moment, um, but I, I, I will, I will actually just note that disclosure will work under the right circumstances, that, that's, that's what we found. Disclosure works using the appropriate wording, um, when you're identifying a functional need or limitation and the hiring committee knows how to respond and doesn't forget itself. So, so, so how do you surprise a hiring committee? How does the, how does the hiring committee forget itself? These actually happened to me, uh, these are direct quotations from job interviews that I had, um, when I was searching for, for faculty appointments, uh, 10 years ago:

'we wanted to interview you because of your work in the accessibility space,' actually not because I, I had a research portfolio and, and, and could compete for the job; 'why would you keep doing all that other stuff,' referring to the aforementioned work in the accessibility space; 'when you get this job, how much of this work is really, really your own;' and, my favourite, 'so what kind of car do you like to drive,' when driving past every car dealership in that particular city. That's how a hiring committee can forget itself.

So a little bit of, a little bit of history, um, where did all of this come from? And I'm going to argue that, that all of this really came from a paradigm that is now about a hundred and some odd years old, that, that's really based in the industrial revolution in manufacturing and tourist economics in how we defined productivity, right, right. Um but more than that, it comes from this, the sort of North American culture of self-reliance, and I use self-reliance differently than I use independence, because to me, they're two separate concepts and they mean two separate things. In North America, we're very self-reliant, um, and, and so, so the notion of not being self-reliant, the notion of asking for supports to be able to do something, is very counter-cultural. But we've also set up the system that says, if you need help, it's okay to ask for it; while at the same time, frowning upon anyone who asks for help, because that, that's what we do in, in the context of, of North American culture. Um if I had more time I, I'd soapbox about that at greater length and we could debate it from a philosophical perspective, but let's really talk about the reality of the lived experience, because everything that I just described to you, um, is, is predicated on disability not being as diverse as disability really is. So, so, so let's talk about, let's talk about that.

Diversity, first of all there's the issue of onset. As I mentioned, disability can be a congenital disability, can be acquired in childhood, or early adulthood. Disability can be acquired, um, in someone whose working-age, disability can be acquired as you age. And, again the vast majority of lived experiences with disabilities are-- the person who does not have a lived experience, has an employment history, acquires a lived experience, and has to deal with the consequences in, in terms of their job. For somebody who, who loses their eyesight while, while having an employment history, they'll often lose their job. And then they have to re-skill or up-skill and, and then figure out what they're going to do. And, and how to go back. And then, lots of people, if this happens over the age of 50, lots of people will simply say, 'you know what, I'm done, I'm going to take early retirement,' and be done with it, right. Um and and so, so it's, it's worth it to note that when we talk about age of onset, it actually qualitatively matters what the age of onset is.

In this conversation, we also need to talk about context, because typically we refer to disability as a bit of a static construct in terms of permanent disabilities, but that's not true. We have temporary disabilities, we have episodic disabilities, we have progressive disabilities, we have situational disabilities, and all of those are going to play into a conversation, alongside that age of onset piece. We also have apparent and non-apparent disabilities, um, and, and what's on the slide currently is the, the paradigm of what we consider apparent, which is basically physical and mobility and some hearing and all of seeing. Um, and then we have non-apparent disabilities, which would be other hearing disabilities, neurodiversity ,chronic conditions, mental health, learning disabilities, developmental disabilities-- many of them, not all of them, and so on. The problem is that, that's a false paradigm, it doesn't work. And it doesn't work because of this thing called assistive technology.

And so, so what is assistive technology? Assistive technology is any device that facilitates a person with a disability doing daily tasks. So not just specialized devices, any device. A smartphone is a piece of assistive technology, right. Um, associated apps are piece, are pieces of assistive technology, but then, when you get to that point, you say, well everyone uses a smartphone, yeah everyone uses assistive technology. But assistive technology helps persons with disabilities. No, assistive technology can help anybody, right. Assistive technology is used when needed, not necessarily something that's used all the time, right.

So, so, so who is assistive technology being used by, and when is assistive technology being used? The broadest definition re-conceives assistive technology in a very different way from how assistive technology was conceived in 1981, right. Just to pick a year, because the 1980s conception of assistive technology was specialized devices used all the time by persons with lived experience with disabilities. So then, this is Mahadeo's definition. You're, you're not going to find this in a textbook, but I, I will tell you, it's, it's my definition, I, I talk about it in these presentations all the time. An apparent disability becomes apparent when somebody is using an assistive device, aid, person, dog, technology in a manner that helps them carry out daily tasks, in a way that is obvious to an observer. That's what's making disabilities apparent.

So let's talk about a different disability framework, then, where our lived experience is modulated by age of onset, context, severity, use of assistive technology, and the environment around us, right. So then, let's come back and ask the question, what's wrong with disclosure? And we, we'll just acknowledge nothing is technically wrong with it, but we do need to understand the hidden assumptions and biases associated. So, so number one, disclosure is, 'I'm asking for help,' the hidden philosophy here, again, is if, if you need help, it's okay to ask for it, but in practice the question is, well why do you need help? Disclosure is, I have to tell you about my disability, not the legal requirement. The legal requirement is accommodation need. In practice, those two things are conflated in people's minds all the time, so that leads to the medicalization of the conversation. Disclosure is putting the person with the disability in charge of the conversation, the intent here is a person- centered approach. In practice, a person with a disability is at the center of that legitimization effort, or that justification that, that justification effort. A person with a disability will feel on the spot, been there, done that, felt on the spot, hot on, under the colour, very stressful, not easy. Disclosure is also making the need obvious, the principle that goes behind this is, one should-- that's, that's my timer going off, telling me I should stop talking in five minutes-- um, the principle behind this is never assume the person with a disability knows themselves and their needs the best. The reality of this is that that's not always true, because again, context matters.

I, I had a mentoring conversation with a postsecondary student before this call, where he, he literally said to me, I don't know what I don't know. I'm in my first year of post-secondary, how am I supposed to figure out what I need, when I've never been in this environment before? Um and, and the reality of course, on top of that, is accessibility supports can be denied or watered down due to a lack of understanding and/or consultation. So what's going on then, what's going on is, we're, we're using the same words, but we're having two different conversations happening at the same time. One by the employer, and one by the the worker applicant.

Let's also ask the question, what's wrong with accommodations? Because there is something wrong with accommodations, uh, accommodations are transactional. The employment rate of persons with disabilities, we know, is significantly lower than the overall population. I will tell you having gotten into the meat of. of the Canadian Survey on Disability data myself, and, and dug around, um, without just relying on, on the data sources that, that CSD, that, that Stats Can publishes, this is influenced by disability type. It's influenced by severity. It's influenced by number of disabilities. It's influenced by age of onset. It's influenced by all sorts of things.

Accessible employment is often considered in this transactional mode of accessibility supports, and negotiated between the employer and the employee. There's a successful use of accessibility supports, so that does not mean that the worker is actually going to be successful in their role. Why is that, that is because we work in an interactional ecosystem with a whole bunch of other people who have attitudes toward disability, and who have attitudes toward accessibility and accommodations. We work with our manager, manager, we work with our teammates, we work with our peers, we work with our direct reports, we work with internal stakeholders, and, and collaborators, external stakeholders and collaborators. Um, we, we work with customers and clients, we work with our leadership, but we also use a bunch of things. We use finance software, we use HR software, we use collaboration software--like Microsoft Teams, we use meeting platforms-- like Microsoft Teams, we use third party software.

We use things that we need to do our job, job specific tools. We use, um, online learning management systems, we use training materials, um, we use the built environment, including furniture, including lighting, including acoustics--we use it. And so, how our accessibility supports, or accommodations, interact with all of these things matters, right. And how people interact with our accessibility supports or accommodations matters. But those don't get taken into account in the conversation, so, so accommodations are not sufficient by themselves. They're designed to facilitate successful completion of job tasks. But we've got this major interactional barrier and usage barrier that's often not considered in the provision of accessibility supports, and that boils down to interactions with people, technology, space, and resources.

All of that leads me to tell you, I would argue, that there are seven barriers to effective accessibility supports in the workplace. Hence the title of the book that we're going to write. Um, one of those is lived experience with disability is not one size fits all. The second is that policy and application don't always line up. The third is that the persons who came up with duty to accommodate probably never had to use it. The fourth is that disclosure is person centered, the requestor is at the core of the conversation, but also the core of the legitimization of their need. Disclosure and trust get conflated, that's number five, workers do this, job applicants do this, hiring managers do this, right. Disclosure doesn't always work is number six. And then the seventh is accommodations alone are insufficient, even when they're working.

So this is, this is me saying this, as a society, we've become very good at building in how to bolt accessibility on, right. So, so accessibility should be built in, and we've done that by building in a process that reactively bolts it on everywhere, which frankly is not great.

So, so in the last one and a half minutes, uh, what can we do about this? First of all, I think we can teach job applicants and workers how to navigate the system better, um, we can, we can move away from teaching usability first language to talking about disclosing functional need, because that seems to work better. Um, we can reinforce a disclosing, when, when not necessary is not lying. Um, we can, we can make sure that, that the moral that we usually tell people, which is, 'if you disclose, you control the conversation'-- we actually say, 'that's not true, disclosure is not controlling the conversation, it's ceding the conversation to the other party.' We need to teach people to read the room better, and we need we need to teach people to understand the Morin test, and then themselves apply it.

Are there alternatives? Yes. One is yes by default, another is accessibility passports, but the third, and the one that I want to talk about for a brief moment, is Universal Design in the workplace, right. We want to move away from the space where we do accommodations at work, to where we build a workplace that is accessible by design. Um, and then from there, we can get into a workplace that is truly constructed to be anti-ableist and anti-disablist.

Universal design, very briefly, is a set of environmental solutions designed to maximize inclusion of the greatest number of persons within the workplace environment. It is not one size fits all, but that is a very common misperception. There are a few models of universal design that exist. There's the Physical Universal Design model that, um, that was um developed in 1991, applicable to space and environments, including virtual. Uh, related to that was the Universal Design of Instruction model, which is applicable to professional development. Um, differentiated from that is a model called The Universal Design for Learning model which is applicable to communication and and engagement. Um, I, and, uh, and Anley, and a few others, about eight years ago, developed, uh, a Cultural Universal Design model that was applicable to policies and practices, um, in uh, in, in education settings is where it started, but we've, we've since then, uh, through the work of the CNIB research team, evolved it into Universal Design for Workplaces.

Does universal design eliminate the need for accommodations, frankly probably not, rather it minimizes the need to ask. Universal design if done right, does come from an anti-able mindset and manifests as accessible by design, where, uh everyone has equal opportunity to participate and engage meaningfully in the workplace setting, which is really what we're after. And so, I'm going to leave you with this question, which is, can we change how we work? And invite questions and discussion, thank you.

Rebecca Gewurtz:
Sorry, thank you so much for that presentation Mahadeo, um, we are now gonna open, the Q&A has been open, and I encourage everyone, uh, to, to type in their questions. If you are new to this Zoom platform, there is a Q&A button at the bottom of your screen, and if you click on it a box will open up where you can type your question. Um, so there's already one question in the, uh, Q&A, um, and I guess it gets to the, the nuts and bolts here around the timing of the disclosure. And so, um, the question is, 'should we, we include reference to disability in, in cover letters and resum�s, um, around supports needed?

Mahadeo Sukhai:
So that is a great question, I, I think there's some circumstances where that's advantageous. So for example if, if you're applying for a job, um, where your lived experience is an asset, um, or you're applying for a job where, where you're, you're going to be working for, for example, example a disability serving organization in, in the non-profit or, or public sectors, then you know what, it, it's beneficial to do that. I would never, I would never actually recommend disclosing the accessibility support requirements in a cover letter. I always think that's better for a conversation.

Um, I, I think, I think there are circumstances where a, an upfront disclosure in a cover letter, where you're arguing that, that this is something that helps you because it's part of, part of what makes you, you well suited to do the job, then sure you can, you can put that in. I think in. in most circumstances, um, that's, that's a very specific use case that I just described, so in most circumstances, I don't actually think it's beneficial. I think either you could get screened out by somebody who doesn't know any better, or you could get included, but for the wrong reasons, right. Then they're not really looking at you in terms of your job, they're, or the job they want you to do, they're looking at you for, for something else, um, or it's going to cause a problem with, with whatever artificial intelligence mediated, um, filtration is going on on the back end, to help out people in culture. So I, I would I, I would be very, very cautious about doing that, um, and, and encourage doing it only when you're sure it's actually going to help you.

Rebecca Gewurtyz:
Thank you, um, so the next question is around how, um, how would you suggest that companies overcome issues, um, um with a portion of the workforce who might not be as accepting of individuals with a requirement for accommodations?

Mahadeo Sukhai:
Um, that's a great question, the very crass answer is wait until they all retire, but, um, but, but I mean, to be fair, that's, that's also, that's also not necessarily going to help matters. Um, there's, there's some really interesting data out there um that, that shows that the members of generation Z, actually have what I would categorize as the poorest attitudes toward disability. Um, and, and as, as members of generation Z start to acquire work experience, and, and, and get into positions of authority, and, and become in, and hiring manager positions, then, then you know they're not going to retire for a while, so, so, so it becomes, how, how do we, how do we sort of navigate through, and, and deal with, um, deal with negative attitudes that come from younger people, as opposed to negative attitudes that ,that might have been from an older generation, um, who, who are closer to retirement.

Um, the, the, philosophical answer to the question is exposure. I, I think, I think it's easy to, it's easy to persist in, um, in preconceptions. It's easy to persist in, uh, this notion of, um, of you know, I I don't really think a person with a disability can work here, kind of thing, until you actually are working side-by-side with a person with a disability. We, we actually have some really nice data, um, that showed that the best perceptions of competency, uh, of persons with disabilities in the general public, came from people who worked with persons with disabilities in their, in their jobs.

During Covid, people were working from home a lot of the time, that didn't actually work the same way, because you weren't, you weren't next to somebody the same way that you were pre-Covid. So, so, so Covid actually did a number on, on that particular, on that particular set of attitudes, um, and it'll be interesting now that we're, we're kind of officially in a post-Covid space, to see if that will rebound over time. Um, so, so arguably, I would say exposure, uh, is, is one of the best ways to, to really address that attitudinal barrier in the workplace.

Rebecca Gewurtz:
Thank you so much, so um, a couple questions now about, uh, universal design and the first one in this area is, uh, can you explain this idea of yes by default?

Magadeo Sukhai:
Um, um yeah, so, so let me, let me tackle that one first, if that's okay, um, so that we're doing one question at a time. So um, so, so yes by default effectively takes the the onus of legitimization away from the person with the lived experience. So, so right now, if, if Emile is my boss, and I go to Emile, and, and I say, 'I need um, I need a large screen, and I need screen magnification software, and I need these other things,' um, Emile is obligated under the way the duty to accommodate is setup, to say, 'okay'. Well, why do you need all of these things, because I didn't say I have a visual impairment, I said I need all of these things, right. Um, and, and so, so Emil is obligated to ask why, and then we go through the process of, of providing documentation.

Yes by default says, 'okay, I'm, I'm going to say yes, we, we'll, we'll find a way to get you what you need. Now help me to understand that better.' So, so it actually changes the middle part of that process a little bit. There is still a duty to inform, but the duty to inquire actually changes so, so that is what yes by default is.

Rebecca Gewurtz:
Great, um, so uh, I'm just going to, um, ask another question first, first, um, before going back to universal design. Um, you spoke about reading the room, and um, which I'm wondering, if you could, uh, comment on how we can better support cases where the persons with disabilities may not have the capacity to articulate their, their views? So if you could say a little bit more about reading the room, and what that might entail.

Mahadeo Sukhai:
So reading the room is actually a really, really difficult concept, right, because, because you, you can have, you can have scenarios where I, as a person with a lived experience, um, will, will have difficulty sort of articulating my perspective and, and how I know I can do the job. But you can also have the the perspective of, all right, um, 93% of human communication is nonverbal, uh, and a number of individuals with lived experience, with disabilities, won't have access to that 93%, right. So, so, so reading the room actually involves understanding what people are saying in the, in the interview, and understanding whether there's any subtext behind it, right.

So, so, I'll give you, I'll give you a, a concrete example, um, let's, let's say again, and now I'm going to pick on Rebecca. So, so, I'm a job applicant and, and Rebecca is interviewing me for a position on her research team. And I come into, I come into Rebecca's office, um, using a white cane, right, and I've got my, my Braille display device hanging, um, in a satchel on my hip, right. Um, and, and now Rebecca wouldn't do this, because I, I know Rebecca knows much differently and, and much better, but, but somebody who would be in Rebecca's position, who doesn't know, would turn around and say to me, 'well, thank you for coming in, tell me how you got here today?' And, and then the conversation actually becomes more about the, the ability for a person with a white cane to navigate, than it becomes about the ability of that person to do the job at hand. And, and the person answers the questions and feels really good that they can answer the questions, and demonstrate confidence, but at the end of the day, the interviewer says, 'I did not get anything about this person being able to do the job, so we're not going to hire them.' And that's actually because the interviewer never asked any of the right questions and, and so, so reading the room in that context means being able to, to sense that what's going on is, is not what should be going on in the interview, and no matter how good the questions are making you feel, because you can demonstrate your confidence, you need to be able to redirect the conversation to, 'well, can we can we talk about the job now, you know I'm here to talk about the job. I want to, I want to be able to tell you how I can do the job, not how I can get to work.' Yeah, yeah, good point, um, okay, um, by the way Francis, I know fully well I didn't fully answer your question, but we can, we can take that one offline, because I, I think it's, there's, there's a much longer answer.

Rebecca Gewurtz:
Uh, yeah, there's, there's, there, I'm, I am, uh, kind of skipping some questions that can be answered more readily offline, like some of the, there's some ask for references to some of the definitions, which I think can be addressed, um, I'm wondering if you could elaborate on what you mean by conflating disclosure and trust?

Mahadeo Sukhai:
Um, so, so, I invite you to think back to what I, what I said when I was talking about the studies that Johannes and I were doing. So, so hiring intent increased upon disclosure, right, but feelings of the hiring manager toward trust toward, toward the candidate, as it related to trustworthiness, and warmth and competence also went up. So the hiring manager felt that I was more trustworthy, because I disclosed. The hiring manager felt warmer to me, because I disclosed. The hiring manager felt I was more competent, because I disclosed, right.

So, so we're conflating disclosing with being trustworthy, right. And, and the thing is, that the hiring managers in those experiments did it, but, but persons with disabilities do it all the time, um, so I will, I will often get the following comment, uh, 'I'm a guide dog user, and I go into the interview and, and I mean, clear I am a guide dog user, but if I don't talk about my my sight loss, am I not being trustworthy?' And my usual response is, 'your guide dog is disclosing for you, right, um, and you don't need to bring it up, because if you bring it up, the employer gets to ask questions. If you don't bring it up, the employer legally can't ask questions.' If, if they know what they're doing, right, um but, but there's there's this preconception among some within the disability community that, that, that you have to be open and you have to be honest and you have to be trustworthy, um, and if you don't disclose you're not being trustworthy, because you're withholding information that the employer needs to know.

And, and I think that's, that's actually the problem, because then what, what everybody has done, what the hiring managers have done, what, what the persons with disabilities have done, and frankly what, what the employment preparedness folks have done, is, is you've put those two things together, and you've made disclosure equal trust. But they're not right.

Rebecca Gewurtz:
Okay, so I think we have time for maybe one or two more questions, so, um, some of the, some of the questions, um, will need to be answered separately, but I think there is a couple questions around, um, supporting employers and hiring managers who come from different backgrounds, who have different knowledge, and um, um, insight into, uh, universal design and disability confidence, or, or, working with, um, hiring people with disabilities, and how do you support them in their journey? What kinds of supports could be offered to employers and managers?

Mahadeo Sukhai:
So, so I mean, it depends on how early we can get people. So, so I, I every so often, will do a guest lector-ship in, um, in HR courses, on what I just did here today, um, and it, it's, it's a half an hour conversation that, that opens some, opens some minds and raises some eyebrows, because it's, it's definitely not the way that people think about disclosure and duty to accommodate. Um, I, I, I, I, think duty to accommodate works for the employer precisely because it's, it's, it's a risk mitigation strategy. Um, but there's, there's a legitimate question about how effective it is for everybody else, um, and, and so, so what, what to do in a space like this is, I think, continue to build resources, I think. Continue to, um, continue to, to train, continue to educate, make sure that, that all hiring managers in, in all companies understand what they're supposed to do in the context of an interview setting where disclosure is, is most likely to happen, right. Um, make sure that, that, that the attitudinal sort of, 'you didn't tell me about this before, so you're no longer trustworthy, thing, like that's, that's not, that's, that's not great. I mean is, and I'm, I'm going to use an example here, um, that, that comes from being a, a recent parent.

My, my, my daughter is 18 months old, um, but if ,if my wife went to her, her boss, you know, five months into the pregnancy and said, 'I'm pregnant, I'm due in four months.' Is, is she suddenly not trusting, trustworthy because she didn't, she didn't acknowledge her pregnancy sometime in the first trimester? Like, that doesn't make sense, right. If, it, if, if, if it doesn't make sense in one context, why should it make sense in a different context, right. Pregnancy is not a health condition, right, pregnancy is pregnancy disability, is not a health condition, not always, right. Um, and, and so, so let's, let, let's, let's learn to talk about these conversations through a lens of, um, of, of respect. Where we're not attaching, um, we're not attaching sentiment, we're not attaching, um, we're not attaching trust, we're not attaching legitimacy, we're not attaching openness to this, this issue of, do I have to tell you something that at this point, you don't need to know, right.

Rebecca Gewurtz:
Thank you so much, um, I wonder if we have to leave it at that? I think so, and let you have final words of advice, Mahadeo, for the way forward.

Mahadeo Sukhai:
Um, you know I, I, I believe, uh, and, and I, I will, I will put the employment technical committee chair hat on for a moment and, and invite Emile, who was also on the committee, to, to agree or disagree. Um, I, I believe that, that the way forward is an inclusive workplace that's built that way from the ground up. I believe there's a way to do that, um, I believe there's probably many ways to do that. But the way to do it isn't to say, 'we want this to work for you, so come tell me what you need and now make it happen,' right. There, there are things that we can all do that will demonstrate commitment to accessibility and inclusion in the workplace that don't involve reinforcing a system that exists because of a use case that is no longer the only use case that it needs to exist for.

Emile Tompa:
Makes sense, definitely like that as a good way to close. Thank you, so, um, we are close to the end of our time together, together. Thank you Mahado for a provocative and informative session.

For the audience, note as I mentioned earlier, that we are recording this session and, as well as previous sessions that we've held in this webinar series, and they'll be available on the idea website later this Spring at www.vraie-idea.ca, and they'll also be available on our YouTube channel.

We will be back for the next IDEA Speaker Series on Friday, March 22nd, so next month. Um, the speaker will be Marie LaBerge from the University of Montreal. In the meantime, do reach out to us at info@vraie-idea.ca if you have any questions or suggestions, and do follow up with us on our various social media accounts. Thank you, and have a pleasant rest of day and weekend ahead.