i2i Expert Video Series

From Invisibility to Inclusion (i2i) is a research project that brings together scholars, researchers, business professionals, employers, NGOs, and arts communities with the aim of improving social, economic and employment opportunities for people with episodic disabilities (EDs) in Ontario workplaces.

Our research with employers and employees with episodic disabilities has shown that people with episodic disabilities have often faced exclusion in the workplace. Many employers have shared that they are not confident in their knowledge of how to support employees with episodic disabilities. Employees have disclosed how workplace stigma and inaccessibility have led to exacerbations in disability symptoms, increases in work stress, and even job loss. 

Seeking to enhance understanding of episodic disability in the workplace and beyond, the i2i project has produced a series of short videos featuring commentary from leaders and experts on disability access and inclusion. The i2i Expert Video Series addresses knowledge gaps on five key topics:


Defining Episodic Disability

This i2i Expert Video introduces episodic disability and describes its connection to a broad range of long-term health conditions. It also discusses the relationship between episodic disability and invisible disability, and considers how episodic disability is measured.

Featured Experts:

  • Melissa Egan – National Lead, Episodic Disabilities, Realize Canada
  • Donna Lero – Professor Emeritus, University of Guelph
  • Wendy Porch – Executive Director, Centre for Independent Living in Toronto
  • Kate Welsh – Counsellor, Educator, Artist and Activist

Transcript

[Lively music]
[Music fades]

KATE WELSH (Counsellor, Educator, Artist and Activist):
Episodic disability is one term for it, some people use the term dynamic disability. Some people use the term invisible disability or hidden disability

DONNA LERO (Professor Emeritus, University of Guelph):
Episodic disability is a relatively new term. It’s still one that many people don’t know
and so it’s contested, frankly. It evolves out of our ongoing knowledge and awareness of disability and the fact that, that is itself, an extremely broad category.

MELISSA EGAN (National Lead, Episodic Disabilities, Realize Canada):
It’s an umbrella term and it holds quite a number of different conditions within it. These include mental health conditions like anxiety and depression, but other conditions like multiple sclerosis, asthma, arthritis. We’ve recently added Long Covid to our list of episodic disabilities to reflect the thousands of people who are dealing with this chronic condition, this long-lasting condition. One thing that we say at Realize quite frequently is that everyone knows someone living with an episodic disability.

DONNA LERO:
It’s a circumstance that is characterized by periods of illness and diminished capacity that vary in frequency, and severity, and duration, and this is complicated for most people to get their heads around. We tend to think of people in one category or another. You’re either disabled or you’re able, your disabilities are either visible or invisible, and we just tend to think in dichotomies.

WENDY PORCH (Executive Director, Centre for Independent Living in Toronto):
I think that the real benefit to defining episodic disability and thinking about it in a way that you can stand back from and look at and see, is to provide people with a way of understanding their experience. The knock-on benefit is also it provides everybody else with a way of understanding that experience too.

DONNA LERO:
So, we’re still grappling with the definition and we’re still grappling frankly, with the measurement of disability, to know how prevalent it is in our society. We do know that the number seems to be increasing as our population ages and as it becomes less stigmatized for example,
to admit that you have a disability or that you have a mental health issue. These things were not always recognized, counted, or admitted before. Our estimates vary, currently from two million to three million Canadians, aged fifteen and over. A large proportion of them are in the workforce
or are workforce age, and so that’s important for us to recognize.

ONSCREEN TEXT:
The invisible nature of some episodic disabilities can create additional challenges.

KATE WELSH:
Getting your needs met, your access needs met is really hard because people assume that
you’re not disabled or that you don’t have any access needs.

ONSCREEN TEXT:
In 2017, Kate came up with the idea for Equity Buttons, as a way of making invisible disabilities visible.

KATE WELSH:
This are some of the examples. This one says, “My disability is invisible.” And this one says, “Please offer me a seat” and it has a little person holding a picture of a graph that goes up and down. These buttons are about you being able to choose when you tell people that you have a disability or not. And I, more recently have also created one for allies, so I have another button that says, “If you need a seat ask me.” And this is really to know that you know, there’s other people that acknowledge that invisible disabilities are a thing, because disability and chronic illness touches us all.

DONNA LERO:
What’s clear is that the need for flexibility and for rethinking our old dichotomous ways,
of having policies and practices are being challenged in ways that can be far more inclusive
and far more supportive of people than we have been doing.

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Disclosure

This i2i Expert Video delves into disclosure, which is often the first stage in the workplace accommodations process. It outlines employer and employee experiences, legal requirements, and best practices for creating a more accessible workplace.

Featured Experts:

  • Kate D. – Manager for Equity, Diversity, Inclusion, Indigenization and Decolonization Projects
  • Melissa Egan – National Lead, Episodic Disabilities, Realize Canada
  • Myra Lefkowitz – Workplace Wellbeing Services, Toronto Metropolitan University
  • Wendy Porch – Executive Director, Centre for Independent Living in Toronto
  • Tammy Yates – Executive Director, Realize Canada

Transcript

[Lively music]
[Music fades]

MELISSA EGAN (National Lead, Episodic Disabilities, Realize Canada):
People with episodic disabilities and their employers need to know that disclosure is a difficult journey to navigate. Many people living with episodic disabilities struggle with the decision
about whether to disclose or not, and then additionally, they struggle with the when to disclose decision. Because, often and legally, we are required on job postings to offer accommodations to any applicant, however, when somebody asks for those accommodations, I have heard from many people with disabilities that they often don’t get an interview if they’re asking for those accommodations.

WENDY PORCH (Executive Director, Centre for Independent Living in Toronto):
There’s lots of places where people have disclosed and then they have lost their job. They have, you know, or they, people just find themselves not being scheduled anymore.

KATE D. (Manager for Equity, Diversity, Inclusion, Indigenization and Decolonization Projects):
So, as an employee I used to start deciding when to disclose an episodic disability only after my disabilities were causing me a fairly extreme amount of discomfort and distress. I don’t recommend that you do that since the disclosure process, when I mainly wasn’t accepting of my disabilities, and when I had spent a lot of my time and energy trying to hide my disabilities, usually increased the stress I was feeling while also decreasing my ability to self-manage my disabilities.

WENDY PORCH:
Leadership sets up a culture of inclusion and a culture, a conscious culture of understanding
and promoting opportunities for accommodation. Without that kind of tone and that sort of culture set by leadership, people tend to bury that need, and they keep working, and they work to the point where it looks like they’re having a performance issue, which they’re not.

TAMMY YATES (Executive Director, Realize Canada):
Employers have a duty to inquire when they see changes in behaviour or again, referring to that shift in performance related issues. There is first that duty to inquire. And on the employee side of things, the right to request accommodation, but also the right not to have to disclose the diagnosis.

MYRA LEFKOWITZ (Workplace Wellbeing Services, Toronto Metropolitan University):
I think both employees and employers often think that what they really need to know is the diagnosis, or the specific condition. And, in fact, that’s not always helpful, what really is helpful is what are the limitations and restrictions, what are the functional limitations, what’s getting in the way
of the individual actually being able to do their job. And if you can focus on that then I’ll think you’ll have a much easier time of finding the appropriate accommodation that suits the individual circumstances.

KATE D.:
Now as an employee, somebody with you know, many more years and decades of experience, I choose to disclose my episodic disabilities to my colleagues I regularly work with and anyone else I decide is trustworthy.

WENDY PORCH:
It should not be presupposed that disclosure is the right answer in all circumstances.
It’s not the right answer in all circumstances. It has to be right for you, you know, the idea that employers are owed a disclosure is wrong. You know, if you haven’t set up a culture of accommodation
and a way for people to know that asking for an accommodation is okay, you can’t expect somebody to come forward and say you know, “Accommodate me”, because why would somebody put themself at risk?
So, you know, I guess the way to kind of get around that is to really make sure that people know that this is a place where you can talk about accommodations, and they happen.

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Accommodation & Support

This i2i Expert Video addresses the “how” and the “why” of workplace accommodations for employees with episodic disabilities, revealing the ways that successful accommodation benefits employees and employers.

Featured Experts:

  • Melissa Egan – National Lead, Episodic Disabilities, Realize Canada
  • Myra Lefkowitz – Workplace Wellbeing Services, Toronto Metropolitan University
  • Elaine Newman – Founder, CEO, Global Learning
  • Drew Sousa – Executive Director, Ontario Occupational Health Nurses Association
  • Chrystal Toop – Counsellor, Storyteller, and Full Circle Doula, Blackbird Ogimakwe
  • Tammy Yates – Executive Director, Realize Canada

Transcript

[Lively music]
[Music fades]

MELISSA EGAN (National Lead, Episodic Disabilities, Realize Canada):
There has been this notion that by asking for an accommodation employees are somehow taking advantage, or getting more than other employees. But what we are trying to do is set up an equally successful opportunity for that employee. Equal access is what accommodation is.

ELAINE NEWMAN (Founder, CEO, Global Learning):
When we’re considering episodic disabilities as an employer there are a number of things to keep in mind and first and foremost is that you’re not just bound by legislation, and understanding that there is a need to accommodate and there’s a commitment to accommodate. But really, how do we consider our employees, each of us being unique and having differences.

CHRYSTAL TOOP (Counsellor, Storyteller, and Full Circle Doula, Blackbird Ogimakwe):
You know, for each of us we could all have the exact same disability but have completely different accommodation needs.
So, it is really you know, about being flexible
and asking that individual what works for them.

MYRA LEFKOWITZ (Workplace Wellbeing Services, Toronto Metropolitan University):
At first glance it may seem like a insurmountable challenge to plan for…to support people with episodic disabilities. But actually, it’s not as insurmountable as it seems, in fact it’s very manageable. When they occur may be unpredictable,
the fact that they will occur is not unpredictable. And so, in the same way that we plan for business continuity, we plan for crisis intervention, we can plan for episodic disabilities. In fact, it’s like planning for vacation coverage.

ELAINE NEWMAN:
You know, people think about well, what’s it going to cost me? As an employer, if I do this, if I’m flexible if I accommodate, if I change my rules if you will, because people love process and rules, and framework, and so on.
But if I change that, oh my goodness, what am I giving up? What is it going to cost me? And I always say and we know you know, “What is it going to cost you if you don’t do it?”

CHRYSTAL TOOP:
I don’t always need accommodations, but sometimes I absolutely do. To the point where I will say, “If you don’t like it fire me.” I’ll figure something out, it’s not worth it because it’s going to make my disability worse.

DREW SOUSA (Executive Director, Ontario Occupational Health Nurses Association):
We are representatives of both the organization and the employees. And we come at thinking that it’s in everyone’s best interest, right? Not just the employees, but also the organizations, not to lose this valuable resource.

TAMMY YATES (Executive Director, Realize Canada):
The time when you need accommodation, and that time comes for all of us, you’d want to know that the structure’s in place
the system’s in place that you know, so that you can have accommodation. So very often, I see that sort of, fearing of the flood gates. Oh my god, so if I give this one person, this one person the light that she needs, someone else is going to request whatever, and then I’ll have to meet everyone’s needs. So what?

MYRA LEFKOWITZ:
If we have learned anything coming out of this pandemic, it’s that we have to be open and flexible to people’s circumstances. And this is not just for people with disability, this is for all of us.

DREW SOUSA:
So it’s an evolution, right? That’s what we’re looking at, an evolution of work. Sometimes people with episodic disabilities provide those opportunities, because they’re asking you to think outside the box.

CHRYSTAL TOOP:
If you think as an employer that you’re missing the mark, push yourself to learn more. There are so many disability advocates, there are so many people doing trainings. There’s nothing wrong with saying, “I didn’t know then, but I’m working on knowing more now.” So…yeah [laughs].

[Lively music]
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This i2i Expert Video explains how episodic disability is protected within Ontario human rights law, underscoring the necessity of recognizing episodic health conditions as disabilities.

Featured Experts:

  • Odelia Bay – Lawyer, Activist, Doctoral Student
  • Mariam Shanouda – Staff Lawyer, ARCH Disability Law Centre

Transcript

[Lively music]
[Music fades]

MARIAM SHANOUDA (Staff Lawyer, ARCH Disability Law Centre):
So, episodic disabilities are recognized at the provincial level as a disability. Our provincial human rights framework, namely the Ontario Human Rights Code, includes disability as one of its protected grounds. The Ontario Human Rights Tribunal has taken a very broad approach to how it interprets disabilities. So, that includes physical disabilities, permanent disabilities, temporary disabilities, progressive disabilities, and so on. And within this definition falls episodic disabilities. So, we can say with certainty that episodic disabilities are indeed recognized in law, and fall within the definition of disability within the Human Rights Code.

ODELIA BAY (Lawyer, Activist, Doctoral Student):
Having this language is immensely important because you can make your case to whoever is going to determine the outcome, but if you don’t have the language to actually explain what’s going on and there isn’t, kind of an understanding out there about what you’re talking about, then people… you’re not going to get the results you need. So, the fact that we’re actually talking about episodic disability as a category of disability, I think is huge, and I’m hopeful that it will make a change.

MARIAM SHANOUDA:
I think the legal landscape is there, we have it. The law’s clear about the protection and entitlements of persons with disabilities. In saying that, with every case brought before the Tribunal or Court, we look at it as a way to better advance, and better protect, and better build up the law to make sure that persons with disabilities
continue to be protected.

ODELIA BAY:
There are misconceptions around how it works. There is lack of information about what people have rights to and how to actually exercise those rights. When I was a master’s student, I needed an accommodation that actually didn’t require anybody to do anything, and I requested it, and I got a note back saying, “We can’t make an exception for you.” Okay? And I said, “Look, this is actually about disability.” I was not well for part of the year. “I’m not asking you to make an exception for me, I’m asking for an accommodation.” And immediately it was actually, the decision was reversed. So, the reason I’m telling this story is the importance of language, and having an understanding of what our rights are, so that we can, what our rights and obligations are as a society, so that we can try and make sure that things are fair for people.

MARIAM SHANOUDA:
As much as I love the law, it really is by nature very inaccessible and it shouldn’t be, right, because the law protects all of us as it should and protects some of us more than others, again as it should. And human rights you know, are recognized as quasi-constitutional, meaning that very few laws can come into place and trump, or violate our rights in a justified manner. And I think a lot of people don’t know that on both sides of the table, whether it’s persons with disabilities, or service providers, or what we can respondents on the other side, don’t know that, don’t know the strength of you know, what it means to be protected or have a human right protected. and it’s very strong here, on a provincial and federal level.

ODELIA BAY:
Human rights law, even though what’s there on the books is really quite good and robust. It’s a complaints driven process. So, there are a couple of barriers that are just inherent in that to begin with. People have to have the time, the resources, the knowledge, and the fortitude to be able to launch a complaint and carry it through. But the other thing is that if we’re always doing it in a complaints driven way, then we are always going to be behind. What we need to be doing is anticipating what the challenges will be for people and be more proactive in terms of removing the barriers.

[Lively music]
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Income Support & Income Security

This i2i Expert Video describes how conflicting definitions of disability and restrictive eligibility criteria limit access to income support programs for people with episodic disabilities, and how a shift toward universal income security could be a better way forward for everyone.

Featured Experts:

  • Melissa Egan – National Lead, Episodic Disabilities, Realize Canada
  • John Stapleton – Social Policy Consultant, Open Policy
  • Claude Wittmann – Scientist, Artist, Disability and Housing Activist

Transcript

[Lively music]
[Music fades]

JOHN STAPLETON (Social Policy Consultant, Open Policy):
Episodic disabilities have been a real problem for disability income programs because
those programs do have a proclivity to compensating the disability and not compensating the person with disabilities or disabilities.

MELISSA EGAN (National Lead, Episodic Disabilities, Realize Canada):
Some of the shortfalls around income support programs really fall right on the definition of disability. Now, this is what qualifies or disqualifies people living with disability from these kinds of programs.

JOHN STAPLETON:
The presenting problem that we have is that there’s approximately thirty different definitions of disability. In Canada we have thirteen, in the provinces and territories, right there they’re all different. We have a different one for CPP, we have a different one for war veterans, we have different ones for the disability tax credit. We don’t suffer any of those problems at all with seniors’ benefits or children’s benefits because they’re simply defined by age whereas in this case we have completely different philosophies of eligibility.

MELISSA EGAN:
Federal programs use different definitions from provincial programs. Definitions differ from province, to province, to province. So, this changes access for people in Canada depending on where they live, depending on how effective their application was, depending on their language capacity. And that is really making a system that is supposed to be relatively equitable for people with disabilities, really inequitable.

ONSCREEN TEXT:
A Basic Income (BI) program is one of the improvements to disability support that advocates propose.

CLAUDE WITTMANN (Scientist, Artist, Disability and Housing Activist):
On a BI, you can relax in your own schedule of being able to work and not being able to work. Something that’s way more difficult when you’re on ODSP and have to report every detail of your change of work schedule and work earnings. There is also like, the basic trust that is in the basic income pile that considers everybody the same. That is very profitable for its self-validation.

MELISSA EGAN:
We know that episodic conditions can come and can go. And so, if someone’s having a good year and they decide, okay, I’m gonna go back to work, are they going to re-qualify next time?
There’s a great deal of fear. And what this does is lead to disengagement from employment.

CLAUDE WITTMANN:
Conceptually, I think that it’s very important that we, we try to exchange the paradigm of social assistance for one that is human rights based. A frame based on human rights is very different
from a frame based on social assistance, because then like, you don’t have to push people in corner,
you don’t have to marginalize them before you start to give them support. It would be a simple way of equalizing again. So, if we change this concept, then we stop talking about support, right? We start to talk about income security maybe, instead of income support.

[Lively music]
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