Ep212: Everybody Knows Somebody with an Episodic Disability, with Melissa Egan

You may be aware of ways to accommodate physical and mental disabilities. But what about episodic disabilities?

If you don’t know what an episodic disability is, you’re not alone. Once you hear Melissa Egan describe it, you’ll probably realize that you, or someone you know, has one. 

Melissa is the National Lead of Episodic Disabilities at Realize, a Canadian charity that fosters positive change for people living with HIV and other episodic disabilities. She helps companies create work environments that are accessible and inclusive.

Please join us in Changing Lenses to see through the eyes of people with episodic disabilities, and how we can support and accommodate their needs.

In this episode, you’ll learn:

• Practical ways to make your workplace inclusive and accessible for people with diverse abilities while centering the person.
• The difference between medical and social models of disability, and why one is more inclusive than the other.
• Why insurance disability plans are inadequate to accommodate employees with episodic disabilities.
• How employers can build a culture of accommodation (that doesn’t cost a ton of money).
• How employees can talk to their employer about accommodating their episodic disability.

 Contact Rosie and find JEDI resources at:  https://www.changinglenses.ca/

 Full transcript available here.

Guest Bio and References/Links

About Melissa Egan:

Melissa is the National Lead, Episodic Disabilities at Realize. She has worked in the field of health and HIV for over 15 years as an educator and facilitator, developing and delivering trainings to diverse audiences across Canada. Melissa brings a commitment to inclusion, diversity, equity, and accessibility to her work, and she has worked extensively with marginalized, LGBTQ, and Indigenous people. Melissa holds a BA and BEd from Simon Fraser University in BC and is currently pursuing an MEd at OISE - University of Toronto.

Find Melissa and other resources on Realize’s website:  https://www.realizecanada.org/en/

References and resources in this episode:

https://www.realizecanada.org/en/our-work/episodic-disabilities/

http://www.episodicdisabilities.ca/

https://www.odenetwork.com/

https://supportedemployment.ca/

https://www.canada.ca/en/employment-social-development/campaigns/hiring-persons-disabilities.html

Transcript

Please note: the transcripts attempt to stay true to the essence of each conversation, while maintaining clarity and readability. As a result, certain "filler" words, and nuances of tone, emotion and emphasis will be missing.

If you're able, you're strongly encouraged to listen to the audio podcast. Transcripts are generated using a combination of speech recognition software and human editors, and may contain errors.

Ep22: Everybody Knows Somebody with an Episodic Disability, with Melissa Egan

Rosie: Listeners, I have a question for you.

Imagine you’re planning a work meeting, and an external guest asks for a sign-language interpreter to be there, because the guest can’t hear, they’re deaf.

Does this guest have a disability?

As you think about my question, what’s going through your mind? Maybe you’re wondering what the correct terminology is. Do we say people with disabilities, or hearing-impaired person? Or maybe you’re wondering if the level of hearing impairment matters. If they can hear a little bit, is that considered disabled? 

Now I have a second question for you. What if we shift the narrative to centre the person, instead of their abilities? Then the question becomes, “How will all our guests experience this meeting? Can everyone access it equally?” instead of “Does this guest with a disability require accommodation?”

If you want your workplace or community to be inclusive and accessible for people with diverse abilities, we’re going to give you practical ways to do that while centering the person, not their abilities. We’ll challenge the medical model of disability and learn why it’s not inclusive.  And here’s some good news, especially for employers – while the road to inclusion is long, it doesn’t have to be expensive. It does require a new mindset.

So today, we’re Changing our Lens to see through the eyes of people with episodic disabilities. If you don’t know what that is, you’re not alone. I didn’t either, but as soon as Melissa Egan described it, I understood it right away. In fact, I realized that I have one myself, and I know other people who do too.

Melissa is the National Lead of Episodic Disabilities at Realize, a Canadian charity that fosters positive change for people living with HIV and other episodic disabilities. She helps companies create work environments that are accessible and inclusive of people with episodic disabilities, because:

Melissa: When we look at accommodation plans, and occupational health providers, insurance companies, these are all set up to respond to things like injury or permanent disability or a condition like cancer, where you say, okay, I'm going to be really sick for this long. And then I need this long to recover. And then I can probably come back. If all things go well. 

And episodic disability doesn't work like that. It's much more of an up and down kind of messy model than it is that particular milestones and, you know, a beginning and an end kind of model. 

Everybody knows somebody with an episodic disability. And when we begin to personalize these issues, we begin to crack open the opportunity and the willingness to make change. So from employers, what we need is an openness to flexibility.  It's not an easy road, but it is one that I'm on. And I encourage a lot of people to join me. 

Rosie: So let’s join Melissa now on this road to inclusion of people with diverse body experiences.

But first – a quick intro and land acknowledgment.

[intro music plays]

Rosie:Welcome to Changing Lenses. You’re invited to step into the lives of people on the front lines of discrimination, racism, and exclusion; to see the world through their eyes; and to hear their personal story of their fight for social justice.

I’m your host, Rosie Yeung, a Chinese-Canadian, immigrant, cis-straight female with invisible disabilities, and I’m passionate about justice, equity, diversity and inclusion.

Do you also want to see social change happen? Then please join me in Changing Lenses.

Each episode is hosted on colonized land that was taken from many Indigenous nations, including the Anishinaabe, the Huron-Wendat, and the Haudenosaunee Confederacy. I seek Truth and Reconciliation with First Nations, Inuit and Métis people of Turtle Island, and I call upon us all to decolonize our thinking, not just our systems. Learn more on my website, changinglenses.ca.

Now please, enjoy the episode.

[intro music ends]

Rosie: Hi, Melissa. Welcome to the Changing Lenses Podcast. Thank you so much for being a guest here today.

Melissa: Hi, Rosie. Thanks so much for having me. It's really great to be able to talk to you about this today. 

Rosie: I'm really glad that you are coming here to talk about it because disabilities and increasing access for people with disabilities is important to me. And it's important to our overall equity, diversity and inclusion community. But you have a very interesting perspective on an aspect of disabilities that we haven't touched on before.

I don't feel like it's very well known, so can't wait to hear more about that. But before we really get into things, I do want to make a safety commitment to you and to our listeners, because what we talk about might end up feeling a little bit sensitive or even uncomfortable.

So I want you to feel as comfortable as you can, and to be able to be honest and real and vulnerable in our conversations. So I commit to you and to our listeners that this is a safe space. And I invite you to keep me accountable, to being respectful and nonjudgmental. And please do let me know if I say, or pronounce anything incorrectly.

Melissa: Absolutely. Thanks so much for that Rosie. 

Rosie: Okay, great. So let's dive right into it. And because you have such an interesting background and the work that you do at Realize Canada, I just find fascinating and so impactful. Maybe what you could talk about a little bit first, as a way of background and context because we are here to talk about episodic disabilities. But I'm wondering if people really know what that means. Cause I actually didn't know it until I met you. Once you explain it, I was like, aha, of course that's exactly what it is. So maybe you could just start with giving us a bit of what Realize Canada is and its work. Especially when I read the tagline that "Realize fosters positive change for people living with HIV and other episodic disabilities." What does that all mean?

Melissa: It's a bit of a mouthful. Just to start off with, Realize is a national nonprofit. So we work in Canada. We are located in Toronto, but we have a national reach. Our intention was to provide people living with HIV, access to rehabilitation services.

So these are things like physical therapy, support groups, psychotherapy, sort of the stuff that doesn't always end up in a benefits package. And so based on that work that we did in the context of HIV, we began to expand our reach again, out even further. Into other episodic disabilities and trying to connect people with really meaningful information and ways to create change. So we are always working in contexts of research, education, and policy and practice change. That's our intention through our work. 

Rosie: Wow. So how do we go from starting to work with people with HIV to then the broader episodic disabilities group?

Melissa: Well, HIV is the kind of infection that has fluctuations. And so we began to see commonalities between the way people are living with HIV and the issues that they were facing and people who were living with other health conditions. And so we got to this experience of understanding that there are things that disable us that occur periodically or episodically, right? So we began to talk about these conditions in the context of episodic disabilities. So to define that. It is a condition that is marked by fluctuating periods or degrees of wellness, or perhaps feeling better and periods of disability or feeling worse. And these periods or episodes are unpredictable.

They vary in severity. They vary in length. And they vary from person to person. One of the things that we've really we noticed about episodic disabilities is that they are largely what people would call invisible or non-evident disabilities. And they include things like arthritis, multiple sclerosis, anxiety, depression, PTSD, Parkinson's, epilepsy, and most recently long COVID or the collection of symptoms that people who have been diagnosed and subsequently kind of ended having active COVID are now experiencing these long-term effects. Things like fatigue and headaches and brain fog and all of these things. So we're beginning to really engage with the community of people who are living with long COVID as well. 

Rosie: Wow. When you explain it that way and talk about some of the specific diseases that have episodically disabling properties, I guess. It hits home for me personally because I have diagnosed depression and anxiety. I've shared that with listeners on a couple of other podcasts. And I only recently came to see it as a disability of any kind. And then to see it as an invisible disability because other than putting a sticker on myself, nobody would know necessarily that I have depression and anxiety.

So even to get to that point, I mean, that's part of the stigma, I think, around mental illness and mental health. Yeah, I do recognize how for myself it feels disabling sometimes where some days I'll be like, I'm fine. You know, it's a good day. I can go to work. Everything's okay.

I don't feel any particular symptoms and other days it's that much harder. Mondays are bad for probably most people, but it feels like every day is a Monday. Or it's like, oh, the effort to get out of the house or to get on the subway or to deal with people in the office and whatever's going on in meetings is extra difficult.

It's occurred to me before to feel like, oh, I wish I could just call in sick, but I didn't feel like I had permission cause I wasn't sick. And when you say now episodic disabilities, like, yes, I wish I could have sort of that permission. Like the episodic nature of it feels like it gives me permission to say today's not a good day.

I can make it up on another day, but today's not a good day for me and I don't need long-term sick leave. I don't need, you know, to take a whole week off. Maybe I don't even need to take the whole day off, but it comes and goes. 

Melissa: Yeah, absolutely. I just want to revisit the concept of stigma that you talked about and disclosing the way that we feel in a work context is something that has not ever really been encouraged. There's this mentality around, oh, we, you know, you don't bring your life to work. You know, you leave it at the door like that idea, but we are whole people.

And so the way that we feel in our bodies is going to affect how we are at work. The way that we feel in our minds is going to affect how we can get through a day. And so with our roots in HIV, we have a really strong relationship with talking about stigma. We are as an organization, very accustomed to navigating some of the challenges of how people have to deal with stigma.

And in our education, we try really hard to ask people to confront it. Where does it come from? How can you work around it and really try and unpack some of the feelings that they have about HIV, about mental illness, about what it means to be a person who might not be feeling great and still wants to have a job, right?

Like we want people to be all or nothing. And that's never the reality with folks. So because mental illnesses are very much an episodic disability and for people who experienced them, I am also a person living with depression and anxiety, and it's been really difficult to try and express to employers that I need to work from home today. I don't need to not work, but what I need is to not get on a subway today, right? My capacity for being around that many people is not at a place where I can get on a subway today. And having that conversation with an employer is really, really tough. So I have not always told the truth, you know?

Yeah. I'm sick. Uh, right. That kind of thing has happened definitely in my career when really, I just need to sit on the couch and cry. Right? Like that's where I'm at. So cracking open the conversation about episodic disability, about mental health and the way that they exist in the holistic life of individuals is a very important and relatively new conversation that Realize is trying to encourage lots and lots of people to have. 

Rosie: Thank you for sharing your personal experience as well. And it's actually not a lie. You're sick, but because people might not understand the kind of sick that you are, or it's not generally accepted, then it's just easier. Right? To just say, I'm sick and I have a cold, than to say I'm sick and I can't face getting on the subway today. 

Something that I think you and Realize also discuss or is an important distinction is maybe the definitions of disabilities, because there are diseases that cause I guess physical incapacitation or physical disability. And these people would not be the same as people with full physical functioning.

And that I think is more of a medical definition or that's the level of justification that I would need to get like a doctor's note to go and say, Hey, this is the reason why I need to take some time off or I have this, you know, this kind of sickness I need to take a sick day. But you've also talked about the social definition and I wonder if you could kind of go into what those two things are and does it even matter when we're talking about disabilities and episodic disibilities?

Melissa: The definitions or what we call models of disability are important because the social model of disability, places people first. So just to kind of back up a bit, the medical model of disability, very, very simply put is that the problem is with you. Your body doesn't work. Your brain is somehow broken and you have trouble navigating the world because you are the problem.

The social model of disability centers the person. The problem is not with you. The problem is you trying to function in a very inaccessible world. So when we think about that in the context of an episodic disability, it is when we're trying to, you know, be able to work from home because our anxiety is really high.

And workplace is saying, no, absolutely not. You cannot work from home. You do not have a doctor's note. We do not allow that unless you have a broken leg. And that limitation is incredibly frustrating for people. And for Realize, and for myself, putting people first in the conversation around disability and around bodies and minds is non-negotiable. It's so frustrating to see people's bodies being named the problem. People's conditions being called the problem. When in fact we have set up a world to respond to one kind of body, one kind of person, and there is no one person, right? And so that openness and that flexibility and that opportunity to include many more models of people I think is something that's coming, but it takes a lot of work and it's a big change. 

Rosie: Thank you for correcting the term. I think when you said the word model, that actually fit a lot better than what I was trying to say. I think that's really important to understand too and reflect over is what is our mental model, I guess when we think about disability.

So not only the episodic aspect or there's invisible disability, there's episodic disability, but even, the idea of what qualifies. If I was to speak maybe in employer terms or HR terms or insurance terms, right, of accommodating disabilities. And when I think about specifically inclusion and belonging and making people feel welcome and dignified in our workplaces. I want to play devil's advocate a little bit, because I can hear in my head, some of the concerns or objections from some employers right now. I mean, I saw it. I think we all hear it and see it when it comes to say, sexual orientation or race, or almost anything that people have to accommodate where it's like, well, it's not enough. You Melissa named off a number of different diseases and illnesses or circumstances where somebody may have episodic disabilities and someone could say, wow, that's like everything. We run the whole gamut. So are you saying that anybody or everybody could have an episodic disability? Like how far are employers supposed to go? How might you respond to someone, an employer who's concerned about, well, what are you asking us to do to accommodate this?

We already have, you know, sick leave and isn't that what insurance is for? What are we supposed to do now if anybody might have an episodic disability? Not saying I agree, but I just can hear that objection.

Melissa: I understand. This is a conversation that I have regularly and I try and respond as gently as possible. And where I tend to start is what has been something that you've perceived as working for a very long time is something that isn't working now. And it probably didn't work then either. But what we've got is a group of people who are more confident and more willing to advocate for themselves, and to say that's not enough, we need more. The difficulty comes up because accommodation plans at many, many organizations and businesses are modeled on the very traditional medical definition of disability. And shifting and changing these plans involves lots of meetings and lots of HR conversations and policy change.

Something that most places are quite resistant to doing. Changing policy takes a long time. It's a pretty arduous process for an organization to go through. So everyone's a little resistant to wanting to do that, and it's still necessary and we still need to make these efforts. 

So when we look at accommodation plans, and occupational health providers, insurance companies, these are all set up to respond to things like injury or permanent disability or a condition like cancer, where you say, okay, I'm going to be really sick for this long.

And then I need this long to recover. And then I can probably come back. If all things go well. And episodic disability doesn't work like that. It's much more of an up and down kind of messy model than it is that particular milestones and, you know, a beginning and an end kind of model. 

So from employers, what we need is an openness to flexibility. It's about trying to understand that not every illness, not every injury is going to function in the same way. So this is about creating options for short-term mental health leave, whatever that might look like at your organization. The cool thing about this is that they get to define it, right?

They can decide what these things look like. That's a lot of power and many of us have relationships with people who are living with episodic disabilities. When I tell people I meet about my job, the most common reaction is, oh my gosh. I have an episodic disability or my daughter or my uncle. Right.

Everybody knows somebody with an episodic disability. And when we begin to personalize these issues, we begin to crack open the opportunity and the willingness to make change. We just need there to be that kind of willingness to accommodate arthritis flare ups, to accommodate getting a body used to new medications, which can sometimes be really difficult on the gastrointestinal system. And being close to home in those situations is often, much nicer than being at work.

So that flexible, open, willingness to hear from people, a variety of experiences, a diversity of body experiences is where we're trying to encourage employers to get to. It's not an easy road, but it is one that I'm on. And I encourage a lot of people to join me. 

Rosie: Amazing. That is such a good call for motivation on why we should change and how it would help. You know, what I think would be great is if you could share some examples, if you have any, of employers who are already there, like they were like, yes, we know this is important.

We want to do this. What are some examples that you've seen of employers who have been able to be flexible and accommodate people with episodic disabilities. 

Melissa: Well, there is someone that I know who's the executive director of an organization. And when she began to run this organization, she really wanted to instill what she calls a culture of accommodation. And what that means for her is that she expects and asks every single one of  her employees, what accommodations they need.

She doesn't wait for them to ask. She doesn't, you know, try and shy away from it because it might cost the organization money. No, there's a culture of accommodation. And so during onboarding, people are asked, "What kinds of accommodations do you need? Not "do you need any?" But "what do you need?" And then at every annual review staff are asked again, what kinds of accommodations do you need?

Right? That's it, it's this expectation that people are not going to have all of the things that they need to be the most effective at their job, right in front of them with an empty desk, a telephone and a computer, because most of the time, that's what we get. Right. Someone might need a pair of headphones.

Someone else might need yoga mats next to their desks and they find an open boardroom and they spend 15 minutes just stretching their body out on a yoga mat. That's an accommodation. Other people have asked for an extra long lunch once a week so that they can take their yoga class. That's incredibly important to their mind and their body health.

So it's about having that creative understanding of the diversity of people that come into your space. And part of the reason that we are really super interested in hiring a diverse kind of staff team is because diversity makes our business better. There are so many studies that have come up against this. And disability is another kind of diversity. It often gets left out but, disability is part of the diversity and inclusion conversation. And when we have diverse staff teams, we do better work.

Rosie: I love that example you just shared. And I want to know who this ED is and what that organization is, like, that is the benefit of having that kind of inclusive culture is people are attracted to that. I don't feel like it's because I want to take advantage of anything. It's, I genuinely have issues that aren't necessarily related to mental health either. Like I got carpal tunnel syndrome a couple of years ago, and I'm short to begin with, and I am sure everything is related to 20 years of sitting at the same desk that is not built for my height, with the chairs that, you know, my legs dangle, all sorts of stuff.

And now working from home, I got myself a sit-stand desk and it has made a huge difference because I can actually make it the height that I need, but it's expensive. And in our you know, work culture today, it would be considered a luxury, right? Probably only executives, if that, would get sit-stand desks. Or you would need a doctor's note. Again, like something very, very special would be required in order to grant you the privilege of having a sit-stand desk or an adjustable monitor or a yoga mat or something like that. And what I think I'm hearing you say is in that organization, it wasn't a what's wrong with you and then we'll accommodate it. It was what do you need and how can we support you? That's beautiful and amazing.

Melissa: It's a pretty interesting departure and often accommodations for people with episodic disabilities don't cost anything. How much does a yoga mat cost, right? I'm sure you have an old couch somewhere in a storage room, right? There's lots of creative ways to respond to people's requests and it doesn't have to be based on an old model. 

We have been taught over and over again, that difference isn't something that we should be really open about. And we shouldn't be telling and sharing. We should hide that because we're not normal. There is no such thing as normal. Whoever defined that probably thought that they were the most normal and the rest of us got left out. And so thinking about things in terms of variety, diversity, difference, inclusion, that's how we're going to get to really great places of work. Incredibly happy people at work. And we'll actually be able to push some things forward and into a better future, rather than continuing to try and cram people into an old model that doesn't serve us anymore. 

We've spent the last couple of years really exploring intersectionality, acknowledging white supremacy, talking about patriarchy and capitalism and all of these kinds of things. Let's do something about it. Let's try and make it so that as we move further in to the 21st century, that we actually don't drag along behind us, all of these old ways of doing things. It's okay for it to be different than it was for our parents. 

Rosie: I am a hundred percent behind that and here is where I want to actually go back to intersectionality or what I would say, like layers of different identities or things that do need to be accommodated or could be accommodated and particularly around gender.

And I'm thinking back to a time in a workplace where there was a woman who didn't have great credibility within the organization. Was kind of known to be a little absent or, you know, didn't seem to have a huge commitment or that was the judgment on her right or wrong. And there would be times when she basically used up all her sick days because every month when she had her period, she had really bad cramps.

And at the time I admit I bought into the rhetoric that was going around the office of, oh, well,  like, come on, we all have cramps, right? All women have cramps. Like you actually need a sick day for that? But we couldn't say anything or it felt like it would be discriminatory to say anything.

And now that you're describing this, now I look back, and I'm like.  Why did we doubt her so much? Like why was the initial judgment? Oh, she must be faking it or, oh, she's just making an excuse. I think that is something really important that we all need to self reflect on is how much are we trusting the other person and why, why don't we trust more? 

For me, that, that begs another, I'll call it a devil's advocate question or objection to raise. And this could be, you know, a bit of a gender thing as well, but is there a requirement or a line between accommodation and inclusion.

Like episodic disabilities, that phrase itself is a little bit charged because as soon as you say disability, it's like, oh, what are my legal obligations? Of course I need to accommodate somebody with a disability. For someone who's just having, you know, menstrual cramps, like, is that a disability? Like, do I have to accommodate something for that? That sounds like more of an inclusion thing, right. And, you know, inclusion has perhaps less weight in terms of regulatory or whatnot, but hopefully you understand my jumbled thing where I'm going here. Like is there maybe more of an obligation on one end of the spectrum than on another end of a spectrum. What do think about that?

Melissa: Well, I think I'm going to try and encourage you and your listeners to move away from a binary understanding of things, right. It's one or the other. And think about things in terms rather than accommodation, which is usually done one-to-one. It's tailored. And you can only do it for that individual. And every other individual needs a different accommodation. 

Figure out what accessibility looks like. Right. Accessibility is where anybody, regardless of what they might be experiencing, can access those days off. So maybe instead of calling them sick days, you call them personal days. Right?

It's just a change in language, and yet it's incredibly powerful. And for people with episodic disabilities even more so. So I don't have to disclose when I'm sick to you, but I can also take a day off when I know that my body or my mind needs one. So coming to that understanding and acceptance of accommodation being limited and accessibility being open is a very helpful approach when we're thinking about workplace accessibility and things that places of work can do for situations where it might be like, well, are you even sick? Because I can't see it. Or you seem really together. Or, you know, it's just your period or whatever it is. How can we make this workplace accessible for people rather than just deciding one accommodation for one person every time? 

Rosie: Great. And a good reminder too about the don't just think in binary terms of it's either yes or no or right or wrong. For an employer who generally wants to be supportive and inclusive of their employees. But they're like, I don't know then if a person has an episodic disability. What would be some starting recommendations you might have for an employer that maybe won't go as far as, "Tell us anything that you need!" But they do want to do something without getting personal and confidential.

Melissa: Well, there are some legal obligations, absolutely. Right. So the thing that you do have to do, generally speaking, is wait for someone to disclose. And keeping in mind that in order to access an accommodation, a person simply has to say, I need an accommodation for this. I have a doctor's note or whatever it is, but they do not have to tell you what's going on with them, okay. Their diagnosis is medical information, and that is private. So none of your business. So keeping those things in mind is very helpful. That a diagnosis is medical information. We tend to all understand that medical information is private.

So when we're talking about accommodation, think about the need rather than the diagnosis. It's what do you need in order to continue to do your job to the best of your ability? Okay, so you need a different chair. All right. Can you get a note from your doctor so that I can get this paid for by the insurance company or whoever's going to pay for it? Your doctor needs to just say, in a note that this person has a medical condition that requires that they have a different chair, right. That has no requirement for disclosure of medical condition. Right. And that is something that a lot of employers get really caught in, "But how do I know?" Well, you're not supposed to, so it's okay if you don't. Trying to work within a situation where you don't have all of the information has to be okay.

You're not going to get all the information. So figure out a way that your policies can reflect that. Also just be open to the story that someone is trying to tell you and consider speaking to your Board, your management team, whatever structure you've got before you say, "Oh, we, we can't do that. We don't do that. We've never done not before." Right. That's often what people hear. "Well, we've never done something like that before."

Okay. Then let's do it for the first time. And try really hard to remember that most of the time, when someone is coming to their employer, asking for an accommodation, they're sick. They're not feeling very well. They have been trying for probably weeks or months to get through work without this accommodation.

And maybe rather than going on something like short-term disability which is no employee for three months, Maybe you talk to them and you figure out, well, actually sounds like what they need is just a day off. So let's talk about it. 

Rosie: And employers, I hope you really picked up on something Melissa said there about not wanting to get to the stage of a short term disability. It is bad for everybody. It might be necessary for healing and recovery, but nobody wants to have to get to stage of, oh, I'm so sick that I can't even function. I cannot come to work at all. 

And employers, you don't want to be in a place where you have to lose somebody for three months or maybe even longer. It is much, much better to be able to have that flexibility and be able to accommodate. If your primary concern is productivity, that's the least productive way to deal with it. Hopefully the concern is more than just productivity, but even if that's your only concern, yeah, this is more productive than if they were just off sick.

 So we've talked a lot about the employers. I would really like to end on a, a supportive note for employees or people in general, who might now they might be hearing, it's like, oh my gosh, Melissa. I do. I think I have an episodic disability. What suggestions would you have for them? Especially if this isn't new to them and maybe they aren't in the most supportive of environments or they're not sure what their workplace provides or is accommodating. Like how might you advise them to approach this and start talking to their employers about what they need.

Melissa: Well, we have a really great tool on our website. And so I encourage folks who are kind of trying to figure out how they should negotiate disclosure. It's an episodic disability disclosure guide, and it takes you through all kinds of questions and it's very private and it's just for you, but you can print it out if you want to, to take to a meeting. But it really outlines, okay, these are the people you have for support. These are the questions you might need to ask. These are the things that would help you kind of navigate the process. So I'm encouraging people to have a look through that. 

Find some language for yourself, right? So today may be the first time you've ever heard the term episodic disability. Give it a Google. See what you find. And then for yourself, kind of figure out what you want to say. I am an incredible supporter and like vocal advocate for practice. We often think of difficult conversations as needing to come out perfectly the very first time. And most of the time they don't. Practice what you want to say. Give yourself the opportunity to sit down with a friend, or a family member, or your cat, and just practice the things that might be helpful. Make a script, go through it, see what you're comfortable with. Because the first time that you have to say, "I have a disability, I need an accommodation." Shouldn't be in front of your HR rep. Right? Use your pets, your family, your friends for that. Right? 

As you get more comfortable, then it will be something that you have kind of integrated into your identity. It's something you will feel comfortable advocating for, asking for, because it is something that you need. And so asking for what you need, that's something that we're not very good at either. So practice doing that too. And I think that's probably the best advice that I've got. Just give yourself the chance to rehearse the things that you're going to say, because they are valuable and important. 

Rosie: Thank you so much for that advice, Melissa. I picture a lot of cats, dogs, and stuffed animals suddenly being the unwilling audience members for some practice conversations, but you're totally right. And I really appreciate too, taking that pressure off. That's what I really got from your advice just now was to not feel like you have to have your whole legal argument or a team of lawyers write something for you that is bulletproof and is going to prove point by point what you need to say.  Speak from the heart and speak as the real you, because that's what we want for you anyway, to be the real you and to share just what's going on, that you feel comfortable with, but to get what you need.

That's that's really the goal. 

Thank you. 

Melissa, you mentioned some resources as well for people. So what would it be the best place they could go to get access to some of those resources?

Melissa: Please visit our website, www.Realizecanada.org. We are full of information. You can find my email address there as well. But hopefully that will be able to answer a number of your questions and provide you with a little bit of language resources. And if you don't find what you're looking for, let me know. Just reach out.

Rosie: Sounds easy peasy. That's great. Realizecanada.org. And listeners, we will have that link as well as some other contact information in our show notes. So don't worry if you missed it, it will be available to you. Just go to our website, changinglenses.ca, and that will be there as well as all the details about this episode. Melissa, thank you so much for coming on here and enlightening me and everyone who's listening.

Melissa: Thank you so much, Rosie, it's been an absolute pleasure speaking to you today, but also getting to know the work that you're doing. It's so important for us to continue to have these conversations and to have opportunities to listen to the kinds of guests that you bring on the show. So I'm very grateful to be a part of that. 

Rosie: A hundred percent. Yes. And listeners, I hope that you did get lots out of Melissa today and if you enjoyed hearing Melissa and if you enjoy these episodes, please do go wherever you listen and subscribe that goes a long way to continue to support and allow us to bring you more of these episodes. So take care. And until next time I'm Rosie Yeung, your guide to Changing Lenses.

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Rosie:Thanks for joining us! I hope we helped to change your lens, and expand your worldview. And if you want to talk about today’s episode with a safe community, or ask me questions directly, please join our Changing Lenses Facebook Group – the link is in the shownotes. This episode was produced and hosted by me, with associate production by William Loo, and post-production by Cue9. Until next time, I’m Rosie Yeung, your guide to Changing Lenses.

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