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SMNTY Classics: Invisible Illness · Stuff Mom Never Told You

• 0:05
  Speaker 1: Hey, this is Annie and Samantha and welcome to Stephane
• 0:07
  Speaker 1: Never Told You production of I Heeart Radio. Today we
• 0:19
  Speaker 1: have a real throwback. We have a real throwback because
• 0:22
  Speaker 1: this was before you came on Samantha before me, before
• 0:27
  Speaker 1: Times of Samantha. But our good friend and frequent contributor
• 0:34
  Speaker 1: Eves of the Female First Series and many other things
• 0:38
  Speaker 1: came on and she talked to me about in visible
• 0:41
  Speaker 1: illness and it was a very good conversation and it
• 0:44
  Speaker 1: was a very thought provoking conversation. It was also one
• 0:46
  Speaker 1: in which I learned a lot that I did not know. Uh.
• 0:50
  Speaker 1: And because it is Disability Pride Month, we thought we
• 0:54
  Speaker 1: would bring this one back. Yes, so please enjoy. We
• 1:02
  Speaker 1: should like pluster that on our walls. Yes, everything, everyone's
• 1:05
  Speaker 1: got something. Hello, and welcome to stuff I've Never told You.
• 1:20
  Speaker 1: I'm Annie Reese and today I am joined by guest
• 1:24
  Speaker 1: co host Eves Jeff Coke. You might have heard Eves
• 1:28
  Speaker 1: on Afro Punk, which is a great podcast. If you
• 1:31
  Speaker 1: haven't checked it out already, you totally should. Or on
• 1:35
  Speaker 1: Stuff of Life, also an amazing podcast that is not
• 1:40
  Speaker 1: doing new episodes anymore, but you can go and find
• 1:43
  Speaker 1: the old archive and check that out. And Eves and
• 1:46
  Speaker 1: I we have worked together for a while, and we've
• 1:49
  Speaker 1: been trying to make this happen for a while, trying
• 1:52
  Speaker 1: to get on the same get on the same podcast. Hi, Eves,
• 1:58
  Speaker 1: are so excited to have you. We've been trying to
• 2:00
  Speaker 1: have you on the show for a long time. Well,
• 2:02
  Speaker 1: I'm really excited to finally be here. Yes, Um, yeah,
• 2:05
  Speaker 1: I've been. I've been hanging around, creeping and lurking around
• 2:08
  Speaker 1: for a while, just looking at the podcast, looking in
• 2:12
  Speaker 1: the window, just like, Hey, when you gonna let me in?
• 2:14
  Speaker 1: When you going in your head rise ups. Yeah, We've
• 2:21
  Speaker 1: We've been trying for a while, and scheduling is always
• 2:25
  Speaker 1: an interesting thing with so many busy people in our office.
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  Speaker 1: But we are thrilled to have you here today. And um,
• 2:33
  Speaker 1: you pitched me a topic that I honestly didn't know
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  Speaker 1: much about. What we're talking about today? Do you want
• 2:38
  Speaker 1: to talk about what we're talking about and why you
• 2:41
  Speaker 1: want to talk about it? Yeah? So what I want
• 2:44
  Speaker 1: you to talk about today. What we are going to
• 2:45
  Speaker 1: talk about today is working women and invisible illnesses, which
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  Speaker 1: is a long and very specific thing because it comes
• 2:53
  Speaker 1: at the intersection of many different issues, I think. But
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  Speaker 1: I guess the reason that I'll wanted to talk about
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  Speaker 1: it is because we really touch on a lot of
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  Speaker 1: these issues, Like we talk about people with disabilities, we
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  Speaker 1: talk about women's issues, we talk about illness, chronic illness, um.
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  Speaker 1: But I think framing it through a feminist lens and
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  Speaker 1: really amplifying the fact that there are specific issues that
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  Speaker 1: women with chronic illnesses and invisible disabilities face, um when
• 3:26
  Speaker 1: they're in the workplace. And also there are just a
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  Speaker 1: ton of people who who have chronic illnesses that you
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  Speaker 1: don't know about and you would never know about. And
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  Speaker 1: I think people think about disability and a really in
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  Speaker 1: a way where they there's a default person that they
• 3:44
  Speaker 1: think about when they think about disability, and that's just
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  Speaker 1: not the case. So I think it's just great too
• 3:51
  Speaker 1: to really bring that to light. Yeah, I'm I'm so
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  Speaker 1: glad that you pitched this because, like I said, I
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  Speaker 1: didn't know too much about it, and it it is
• 4:02
  Speaker 1: something that I don't think we talked about at all
• 4:05
  Speaker 1: when we did the episode with Annie Cigara on our
• 4:09
  Speaker 1: episode about overcoming disability and kind of the problematic phrase
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  Speaker 1: that that is, we got a lot of response back
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  Speaker 1: to it a lot of stories and personal anecdotes, and
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  Speaker 1: I was telling you I learned a lot from that
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  Speaker 1: episode as well, and it shocked me how people feel
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  Speaker 1: comfortable coming up two people with disabilities and pointing out
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  Speaker 1: although you were using that wheelchairs a moment ago, right,
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  Speaker 1: So I guess you're you're faking or just always questioning ridiculous. Yeah.
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  Speaker 1: I think the thing about it too is that you
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  Speaker 1: know and thinking about not being educated on it, Like
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  Speaker 1: that's really easy because people have such a range of disabilities.
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  Speaker 1: There are so many different things that people are dealing
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  Speaker 1: with when it comes to conditions, so you can't really
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  Speaker 1: know everything. Like we're going to be continually learning about
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  Speaker 1: how people deal with their issue use and how they
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  Speaker 1: face their own issues and how they want to talk
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  Speaker 1: about it themselves, which is you know, the most important
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  Speaker 1: thing um to listen to the people who are actually
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  Speaker 1: going these things. But I think also we're in a
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  Speaker 1: really you and I are in a really interesting position
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  Speaker 1: because we we're in the workplace right now, so this
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  Speaker 1: is kind of meta, Like, you know, we're able to
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  Speaker 1: be in our workplace and talk about this kind of thing,
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  Speaker 1: and at the same time we're saying these things are
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  Speaker 1: not talked about in the workplace enough. I think that
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  Speaker 1: applies in our case as well, Like we don't talk
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  Speaker 1: about it enough here, yet we're here right now talking
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  Speaker 1: about it, which I think is a good thing. Yeah,
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  Speaker 1: I completely agree. And it does tie into a lot
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  Speaker 1: of topics that we've discussed before. UM, emotional labor is
• 5:44
  Speaker 1: a big one, and you turned me on to this. Um,
• 5:48
  Speaker 1: these badges. Please offer me a seat badges. I've never
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  Speaker 1: heard of that or seen that before, but it's it's
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  Speaker 1: a badge that you would wear it. I would say,
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  Speaker 1: probably really helpful on public transportation, and it's just a
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  Speaker 1: way of indicating that maybe you can't see what I'm
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  Speaker 1: dealing with, but I could really use a seat, right.
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  Speaker 1: And I think that that's just a really good example
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  Speaker 1: of how people deal with their illnesses and a very
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  Speaker 1: everyday thing, because I think these badges were in London
• 6:18
  Speaker 1: is where they were instituted, And you don't have to
• 6:22
  Speaker 1: pronounce your illness when you sign up to get the
• 6:24
  Speaker 1: badge or anything like that, so there's nothing like that
• 6:27
  Speaker 1: that's required of a person to get it. And they
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  Speaker 1: have these guidelines on how other people should be treated
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  Speaker 1: when they're on public transportation. But um, yeah, it's a
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  Speaker 1: really good example of how people face these things like
• 6:42
  Speaker 1: every day in moments where it may be very comfortable
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  Speaker 1: for you if you're a person who's not affected by
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  Speaker 1: your disabilities, or you don't have any disabilities that would
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  Speaker 1: disrupt the way that you take public transportation. It's it's
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  Speaker 1: a it's a moment where you can say, oh, like,
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  Speaker 1: there are people who have different lives than I do, um,
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  Speaker 1: and maybe they're not in a wheelchair and they don't
• 7:08
  Speaker 1: need to say or maybe they're not elderly um and
• 7:11
  Speaker 1: need to sit. But there may be another reason that
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  Speaker 1: a person should really have a seat to make the
• 7:16
  Speaker 1: experience of commuting from one place to another, which is
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  Speaker 1: such a thing that you should find comfort in, Like
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  Speaker 1: you can't. We're in Atlanta, so can be oh yes, yeah,
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  Speaker 1: So I guess the thing about this topic is that
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  Speaker 1: there are so many there's like it's like a nesting dolly.
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  Speaker 1: So there's this large category of like people with disabilities,
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  Speaker 1: and then there's women with disabilities, and then there's women
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  Speaker 1: with disabilities in the workplace, and it is this like
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  Speaker 1: intersection of identity. So there's like this multiple discrimination that's
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  Speaker 1: going on there. So in thinking about women with disabilities
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  Speaker 1: in the workplace, you can break it down even further
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  Speaker 1: than that to women of color with disabilities in the
• 8:01
  Speaker 1: workplace and queer woman with disabilities in the workplace, And
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  Speaker 1: so beyond the sexism and the misogyny and the able
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  Speaker 1: ism that may happen in the workplace because of those identities,
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  Speaker 1: you can also have a racism that happens as a
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  Speaker 1: part of it. Um. So, yeah, there are a ton
• 8:19
  Speaker 1: of challenges, and I know that we won't be able
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  Speaker 1: to touch all of them. That would be exhaustive. So yeah, um,
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  Speaker 1: I guess the first thing I think of when I
• 8:31
  Speaker 1: think of invisible illness, um is the term itself. So obviously,
• 8:39
  Speaker 1: like words, should be something that we're thinking of all
• 8:41
  Speaker 1: the time when it comes to issues like this, and
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  Speaker 1: it's something that changes all the time. So an invisible
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  Speaker 1: illness or disability specifically, it's something that's a physical, a mental,
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  Speaker 1: or neurological condition that limits a person's movement, senses, or activities.
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  Speaker 1: And it's one that's invisible, which means that can't see
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  Speaker 1: it right off the bat, and and like clearly that's
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  Speaker 1: not something that a person with an invisible quote unquote
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  Speaker 1: illness or disability would feel themselves because they're the ones
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  Speaker 1: who are going through it. So it's something that is
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  Speaker 1: you know, it's a power dynamic because it's really from
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  Speaker 1: the perspective of the person who doesn't have the disability
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  Speaker 1: or illness. Yeah, I'm glad you you brought that up,
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  Speaker 1: because it is important that we think about words. I've
• 9:30
  Speaker 1: I love words. I just had a conversation about this,
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  Speaker 1: like literally an hour ago about we should really re
• 9:37
  Speaker 1: examine a lot of words in our language and where
• 9:40
  Speaker 1: they come from because the past can be offensive. So
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  Speaker 1: I really appreciate that you you brought that up. Yeah,
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  Speaker 1: and I am guilty. You know, I have to check
• 9:53
  Speaker 1: myself sometimes because you and I talked about yesterday, how
• 9:55
  Speaker 1: something that I realized I say, it's like, oh, there's
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  Speaker 1: a blind spot. Yeah, we're just like okay, there whereas
• 10:03
  Speaker 1: are important and there's just arrange when it comes to
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  Speaker 1: like how much a disability affects a person and how
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  Speaker 1: it affects their performance and their day to day activities.
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  Speaker 1: So I think the most important thing is not to assume.
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  Speaker 1: But I would say not to assume in the direction
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  Speaker 1: where it's like don't assume that they are not disabled.
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  Speaker 1: But I think it's more so okay to assume that
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  Speaker 1: a person does have a disability, because just the sheer numbers,
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  Speaker 1: like a large percentage of people in the world have disabilities. Yeah.
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  Speaker 1: According to the CDC, twenty seven million women in the
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  Speaker 1: US have disabilities, and among women Native Americans and African Americans,
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  Speaker 1: they have the highest percentage of those of those disabilities. Yeah,
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  Speaker 1: and it's like, obviously a lot of those people also
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  Speaker 1: are in the workplace. So we're going when we're in
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  Speaker 1: the workplace, we're going to need to address these issues
• 11:04
  Speaker 1: to make a more equitable workplace, in a workplace that's
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  Speaker 1: safer for everybody. Yeah, because isn't that ideal? Isn't that
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  Speaker 1: what we want? Yeah? And I'll also add that the
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  Speaker 1: notion itself of invisible disability can be a little problematic
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  Speaker 1: because it operates like under this assumption that the disabled
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  Speaker 1: body has to be like hyper visible, like you have
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  Speaker 1: to be you have to have disabled on your forehead
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  Speaker 1: and read letters or something like that. And it's the
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  Speaker 1: responsibility of people with disabilities to declare themselves as such,
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  Speaker 1: which is not the case. Um that burden shouldn't be
• 11:43
  Speaker 1: on people with disabilities, and it's kind of like this
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  Speaker 1: thing where people with invisible disabilities are like twice removed
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  Speaker 1: because they're outside of this norm that is already outside
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  Speaker 1: of a norm, like people's disabilities are already mothered. I
• 12:00
  Speaker 1: will say, using the term invisible illness is still important
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  Speaker 1: because it's still something that's not addressed enough and it's
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  Speaker 1: not talked about enough, So it's kind of necessary to
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  Speaker 1: still use it so we remember and recognize and acknowledge
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  Speaker 1: the fact that there are people who have disabilities that
• 12:18
  Speaker 1: we necessarily wouldn't assume based on our perceived notions of
• 12:23
  Speaker 1: what a yeah, personal disabilities should look like. Yeah, and um,
• 12:28
  Speaker 1: like you're saying, don't assume. And I remember when I
• 12:32
  Speaker 1: first went to when I went to college, and I
• 12:36
  Speaker 1: had all these new friends and we were learning about
• 12:39
  Speaker 1: each other, and I just it was constantly falling into
• 12:42
  Speaker 1: that trap of comparing myself to my friends, right, and
• 12:44
  Speaker 1: they're what I saw is perfect life, and I in
• 12:47
  Speaker 1: every instance it was one of the best life lessons
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  Speaker 1: I ever got. I would learn that they were dealing
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  Speaker 1: with all of this stuff that I didn't know about.
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  Speaker 1: And everyone's got something, right, Oh, I I think that's
• 13:01
  Speaker 1: a great thing to keep in mind. Yeah, we should
• 13:03
  Speaker 1: like plaster that on our walls. Yes, everything everyone's got
• 13:06
  Speaker 1: something and then underneath is my other thing. Something always
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  Speaker 1: comes up because it does, it's true, right, Um. And
• 13:16
  Speaker 1: if we're talking about invisible disabilities, some some examples are
• 13:21
  Speaker 1: things like chronic pain or fatigue, HIV, endometriosis, epilepsy, narcolepsy, PTSD,
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  Speaker 1: irritable bowel syndrome, being deaf, are hard of hearing, and
• 13:31
  Speaker 1: lyme disease. And fifty four million women have multiple chronic conditions,
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  Speaker 1: many of which would not be considered disabilities because they
• 13:38
  Speaker 1: don't impair day to day activities. But that's a lot
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  Speaker 1: of women dealing with in illnesses and chronic conditions every day.
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  Speaker 1: And a lot of those women, yes, are in the workplace. Yeah.
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  Speaker 1: And even though we are super familiar with all of
• 13:54
  Speaker 1: those things you just name, and we can name a
• 13:56
  Speaker 1: ton more illnesses to that really affect people and you
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  Speaker 1: might not necessarily see it. Um, there's not much data
• 14:04
  Speaker 1: on how women in the workplace who have disabilities are affected.
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  Speaker 1: And it's like that intersection is it just doesn't exist.
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  Speaker 1: It's even when you break it down further like trans women.
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  Speaker 1: It's just it's not a ton of it out there.
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  Speaker 1: And to add to that, it's like women are left
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  Speaker 1: out of the policies and legislation that have to do
• 14:25
  Speaker 1: with disabilities. Like there maybe there's it on women that
• 14:29
  Speaker 1: are included in these in laws, and there's also data
• 14:32
  Speaker 1: on disabilities and it's included in laws. But just kind
• 14:34
  Speaker 1: of thinking about the two together is it's not super common.
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  Speaker 1: And so you know, women with disabilities are all so
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  Speaker 1: often left out of the mainstream disability and women's movements.
• 14:46
  Speaker 1: So it's just this a challenge, um to dig up stuff. One. Yeah,
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  Speaker 1: women with invisible illnesses in the workplace. Yeah, I found
• 15:04
  Speaker 1: some estimates up to of illnesses are invisible. And I've
• 15:11
  Speaker 1: talked before on this show about, um, some of the
• 15:15
  Speaker 1: things I'm dealing with, I actually didn't know that they
• 15:17
  Speaker 1: qualified until I started doing the research. Yep, that's the point. Yeah. Um,
• 15:24
  Speaker 1: I've been told by one more than one person that
• 15:26
  Speaker 1: my greatest skill is acting like everything's okay. I'm very
• 15:31
  Speaker 1: ill about that. Where you were you upset that they
• 15:33
  Speaker 1: said that to you? Or are you like, you're probably right?
• 15:36
  Speaker 1: I was kind of It was one of those weird
• 15:38
  Speaker 1: things where it almost felt like a loss, like I
• 15:42
  Speaker 1: had been pretending so well and for them to realize like,
• 15:48
  Speaker 1: oh no, you are dealing with these other things. And
• 15:51
  Speaker 1: that's something we're going to talk about too, is the
• 15:54
  Speaker 1: feeling that we've set up and shown time and time
• 15:58
  Speaker 1: again in our media, in our society of failure. I
• 16:02
  Speaker 1: think are being weak, which I have definitely felt. Um.
• 16:07
  Speaker 1: So I have a few and one I've talked about
• 16:10
  Speaker 1: um chronic PTSD on here. I have migraines UM, which
• 16:15
  Speaker 1: I again I didn't know, chronic fatigue one super bad ear,
• 16:20
  Speaker 1: and an eating disorder that comes it like comes and goes.
• 16:24
  Speaker 1: But I feel ashamed when I tell someone I have them, honestly,
• 16:28
  Speaker 1: and I feel like, um, they won't believe me that,
• 16:32
  Speaker 1: They'll think I'm weaker, a faker. And I've more than
• 16:35
  Speaker 1: once wished I had some kind of card I could
• 16:37
  Speaker 1: just show someone from a doctor that says, yes, right,
• 16:40
  Speaker 1: she's she needs to legitimize what you're saying, right, And um,
• 16:45
  Speaker 1: I've had on the other side of that, I've had
• 16:47
  Speaker 1: a doctor tell me, well, you can't be in that
• 16:49
  Speaker 1: much pain because your face is totally fine, or once
• 16:51
  Speaker 1: you're laughing, but I feel like I've been socialized not
• 16:54
  Speaker 1: to show weakness. Also, I laughed generally, and it's like
• 16:57
  Speaker 1: my response to pain. It's a weird thing, but some
• 17:00
  Speaker 1: people do that. I want to say, that's weird. It's
• 17:01
  Speaker 1: probably more common than you're making it to be, right now,
• 17:05
  Speaker 1: I think so, I think that's pretty Like it's like
• 17:08
  Speaker 1: when you're scared and you laugh after just a reaction.
• 17:11
  Speaker 1: And then on the other other side of the coin,
• 17:13
  Speaker 1: I've had a doctor tell me to quit being such
• 17:15
  Speaker 1: a baby when I did display sense of distress. What's
• 17:18
  Speaker 1: wrong with being a baby? First of all, I like, yeah,
• 17:25
  Speaker 1: you don't like babies. I should have turned it around
• 17:27
  Speaker 1: on it. I like that. I'm going to remember that
• 17:31
  Speaker 1: um in my house I've talked about before tears very much,
• 17:34
  Speaker 1: one where you did not complain or wine. And yeah,
• 17:39
  Speaker 1: that that story that we see that we talked about
• 17:41
  Speaker 1: in our other episode around disability the failure of not
• 17:45
  Speaker 1: getting better, because that scene is like success, right, but
• 17:50
  Speaker 1: that is a problematic, very problematic arc in a way
• 17:53
  Speaker 1: to look at things. But it's also just damaging and incorrect,
• 17:57
  Speaker 1: like you're not going to it better and better or
• 18:03
  Speaker 1: like get through it. Like I feel like, that's something
• 18:05
  Speaker 1: a lot of people say when you tell people that
• 18:08
  Speaker 1: you have a condition, like, oh, you'll get through it,
• 18:11
  Speaker 1: you'll get better, And I can get that, Like how
• 18:13
  Speaker 1: that's reassuring, But also the reality is stuff is chronic
• 18:18
  Speaker 1: a lot of the times, and you just have to
• 18:20
  Speaker 1: live your life as you see fit while dealing with
• 18:23
  Speaker 1: the issue. Yeah. And I've definitely seen when I've told
• 18:29
  Speaker 1: people before in the workplace that immediately like what does
• 18:33
  Speaker 1: this mean for me? Look? And then the sort of
• 18:37
  Speaker 1: implication like aren't you gonna get past it? When is
• 18:39
  Speaker 1: the end date for this? How long am I going
• 18:42
  Speaker 1: to have to put up with him? And they're always
• 18:44
  Speaker 1: so worried about time. I like how you said that.
• 18:48
  Speaker 1: That makes it sound like you're you're like a goddess.
• 18:53
  Speaker 1: Oh you mortals, You're foolish time constructs. I think I've
• 18:58
  Speaker 1: revealed too much about myself. Yeah, I'm very es um. Yeah.
• 19:06
  Speaker 1: And to be clear, having a disability is an obstacle
• 19:10
  Speaker 1: to getting work in the first place, right, Yeah, about
• 19:14
  Speaker 1: eight and tim people with disabilities in US don't have jobs,
• 19:17
  Speaker 1: even though if they desire to have jobs. And even then,
• 19:20
  Speaker 1: men with disabilities are more likely to have a job
• 19:22
  Speaker 1: than women with disabilities, which likely contributes to higher poverty
• 19:26
  Speaker 1: rights and women with disabilities and disability and poverty are like,
• 19:30
  Speaker 1: there's correlation there. In general and globally, unemployment rights have
• 19:34
  Speaker 1: the highest among women with disabilities. The un even estimates
• 19:37
  Speaker 1: that seventy of women with disabilities are unemployed, and women
• 19:41
  Speaker 1: with disabilities who are employed often earned less than men
• 19:45
  Speaker 1: and women without disabilities. And once women with disabilities do
• 19:49
  Speaker 1: have jobs, they face stuff like pay gaps, unequal hiring
• 19:52
  Speaker 1: and promotion standards, and you know all the systemic issues
• 19:56
  Speaker 1: that go along with having more than one marginal identity. Yeah,
• 20:00
  Speaker 1: all of those things. According to HILDA, which is the
• 20:03
  Speaker 1: Household Income and Labor Dynamics Australia Data UM, nearly half
• 20:07
  Speaker 1: of women dealing with chronic illness do not have access
• 20:10
  Speaker 1: to paid holiday leave, compared to thirty seven percent of men.
• 20:14
  Speaker 1: About one third of women with chronic illness SURVEID indicated
• 20:17
  Speaker 1: they wanted to work more hours, which seems to suggest
• 20:20
  Speaker 1: that flexible schedules around their illness are hard to come by.
• 20:24
  Speaker 1: The article also talked about the socially acceptable role of
• 20:28
  Speaker 1: a sick person and the manager's desire to do the
• 20:31
  Speaker 1: quote right thing by offering only a lighter so annoying, yes,
• 20:36
  Speaker 1: heavy sci in d assumptions, assumptions, quit doing it. Women
• 20:41
  Speaker 1: with chronic illness also expressed dissatisfaction with advancement opportunities and
• 20:45
  Speaker 1: reported feelings that they were not taken seriously when it
• 20:48
  Speaker 1: came to promotions. They were also more likely to be
• 20:52
  Speaker 1: underpaid a ton of crappy stuff, yeah right, um, and
• 20:58
  Speaker 1: a lot of services for people with disabilities, like we
• 21:01
  Speaker 1: have to remember we're made with white men in mind,
• 21:04
  Speaker 1: like thinking about the term disability in the first place.
• 21:06
  Speaker 1: That's something that's really centered around law. Um. And they
• 21:10
  Speaker 1: only accommodate those with physical invisible disabilities, not as if
• 21:14
  Speaker 1: people with visible disabilities aren't also important to including, but
• 21:19
  Speaker 1: really focusing on that, whereas illnesses and disabilities associated with
• 21:22
  Speaker 1: women have a lot of the time been written off
• 21:25
  Speaker 1: as trivial and self inflicted. Yeah right, hysterics, yes, you know,
• 21:32
  Speaker 1: the hysterics. And then so the need is to raise
• 21:38
  Speaker 1: the voices of those who are affective about illnesses and
• 21:41
  Speaker 1: disabilities that we can't see, and for more equitable and
• 21:44
  Speaker 1: safe workplaces that recognize and adjust the needs of women
• 21:47
  Speaker 1: with invisible conditions. Um, there's this book called Women with
• 21:50
  Speaker 1: Visible and Invisible Disabilities that really um centers the experience
• 21:55
  Speaker 1: of women that have disabilities. Several years old at this point,
• 21:58
  Speaker 1: but there was a for is that. I really like
• 22:01
  Speaker 1: the way they put which is that in a healthy,
• 22:03
  Speaker 1: supportive society, barriers are removed and opportunities for all people
• 22:07
  Speaker 1: are provided without question, and like that's that's obvious, but
• 22:11
  Speaker 1: it's just like that's really important to highlight because it's like, yeah,
• 22:17
  Speaker 1: people have experiences that you don't know about and you've
• 22:21
  Speaker 1: never had, and they also deserve to work in an
• 22:25
  Speaker 1: environment that is supportive to them. So the barriers that
• 22:29
  Speaker 1: are created against women with invisible illnesses when it comes
• 22:32
  Speaker 1: to employment only served to maintain this cast system we
• 22:35
  Speaker 1: have set up. Yeah, and I think a lot of
• 22:40
  Speaker 1: it has to do with a and we're gonna talk
• 22:43
  Speaker 1: about this a little later, um, A lack of empathy
• 22:47
  Speaker 1: and an unwillingness to think about any experience outside of
• 22:51
  Speaker 1: your own. Yeah. Um, we need to talk about empathy more,
• 22:55
  Speaker 1: and we need to talk about it more and not
• 22:57
  Speaker 1: framing it as this thing that's like you should keep
• 23:00
  Speaker 1: the hush hush, like it's okay that for us to
• 23:05
  Speaker 1: talk about things like that, you know what I mean. Um,
• 23:09
  Speaker 1: I just wanted to call out a couple of anecdotes
• 23:11
  Speaker 1: that people have had because I feel like it's really
• 23:13
  Speaker 1: important to know that people are dealing, especially since there's
• 23:16
  Speaker 1: not that much data out there on the subject, that
• 23:20
  Speaker 1: people deal with this in real life, and we should
• 23:22
  Speaker 1: listen to people. It's not always about data, the experiences
• 23:25
  Speaker 1: that people themselves have. It's very important as well. So
• 23:29
  Speaker 1: there was one MPR article from that told the story
• 23:31
  Speaker 1: of a woman named Carly Matosh Are Carly Meadosh I'm
• 23:35
  Speaker 1: not sure how to pronounce that one. Hey, Carly Um
• 23:40
  Speaker 1: who's had Crohn's disease since she was thirteen and had
• 23:42
  Speaker 1: recently been diagnosed with fabri on milegia. And that's something
• 23:46
  Speaker 1: that could be considered a visible illness. And we'll talk
• 23:49
  Speaker 1: about fabri miles a little bit later too, because it
• 23:51
  Speaker 1: is a women's illness, but there it has a lot
• 23:53
  Speaker 1: of symptoms like fatigue, um and chronic pain that go
• 23:57
  Speaker 1: along with it, and a lot of people debate over
• 24:01
  Speaker 1: whether it's legitis, medical legitimacy essentially right, um, So, she
• 24:05
  Speaker 1: said she would sometimes lay on the bathroom for thinking,
• 24:08
  Speaker 1: am I going to die? Should I jump out in
• 24:10
  Speaker 1: front of traffic so that I can die? And she
• 24:13
  Speaker 1: said that everyday task are difficult for her, even though
• 24:15
  Speaker 1: nobody would be able to tell from the outside looking
• 24:17
  Speaker 1: in um She's had people judge her first off, like
• 24:20
  Speaker 1: using a handicapped parking tag, and has had trouble getting
• 24:24
  Speaker 1: accommodations from a potential employer of the story set. Another
• 24:28
  Speaker 1: example is from the book Invisible, when Michelle lent her
• 24:32
  Speaker 1: She talks about how she told her boss at a
• 24:36
  Speaker 1: publication she was diagnosed with cancer, and her boss had
• 24:40
  Speaker 1: confronted her, demanding to know why she missed her second
• 24:43
  Speaker 1: day of work, because yes, she found this out on
• 24:46
  Speaker 1: her first day of work. She disguised as she felt
• 24:49
  Speaker 1: like she was stammering in the face of zero empathy,
• 24:52
  Speaker 1: and apologized for the timing of the disclosure. In response,
• 24:56
  Speaker 1: her boss told her that she needed to be there
• 24:59
  Speaker 1: working in the more and to quote, leave her cancer
• 25:02
  Speaker 1: at the door, and there was no HR department or
• 25:05
  Speaker 1: person at that magazine for hersh to turn to, which
• 25:09
  Speaker 1: is a thing for a lot of people. Unlike us,
• 25:11
  Speaker 1: we have a HR department that we can turn to,
• 25:13
  Speaker 1: but a lot of people have HR, don't have HR
• 25:15
  Speaker 1: departments at all, or the ones that they do are
• 25:17
  Speaker 1: ineffective or are problem They're the ones who say things
• 25:21
  Speaker 1: like leave your cancer at the door. Yeah, yeah, I
• 25:23
  Speaker 1: know personally, um so from people it's not trying to
• 25:28
  Speaker 1: make this yeah, um so. I feel like there are
• 25:32
  Speaker 1: a lot of people who have been in situations like
• 25:35
  Speaker 1: the author, like Michelle and Hirsch have been in as well. Yeah.
• 25:39
  Speaker 1: And one thing before we move on to the next example,
• 25:41
  Speaker 1: I wanted to include that she touched on in her
• 25:44
  Speaker 1: book a little bit is the strain it puts on relationships.
• 25:49
  Speaker 1: Um From her book quote, the woman gets a certain
• 25:51
  Speaker 1: type of health issue, the marriage maybe six to ten
• 25:54
  Speaker 1: times more likely to end divorce. And she uses the
• 25:57
  Speaker 1: example of new Gingrich who has left two wives with illness,
• 26:01
  Speaker 1: one with cancer, one with him mess And I in
• 26:04
  Speaker 1: my personal experience, I've only reached the point of telling
• 26:07
  Speaker 1: someone in a relationship once about what I was dealing with,
• 26:10
  Speaker 1: and I remember distinctly feeling like I was giving him
• 26:13
  Speaker 1: a weapon to hurt me with. It was a very
• 26:15
  Speaker 1: scary feeling, and I suppose that's what vulnerability is in general.
• 26:23
  Speaker 1: And I felt like I was giving up a card,
• 26:25
  Speaker 1: and if we ever broke up or even like state
• 26:29
  Speaker 1: in the relationship that it could be weaponized against me.
• 26:32
  Speaker 1: And the the work of hiding it from someone you
• 26:36
  Speaker 1: spent so much of your time with it was exhausting
• 26:40
  Speaker 1: and it hurt our relationship, and it was definitely one
• 26:41
  Speaker 1: of the reasons our relationship ended. So I think that's
• 26:45
  Speaker 1: another thing to talk about too, is I remember, I've
• 26:51
  Speaker 1: gotten very in my dating life. I've become very um
• 26:55
  Speaker 1: first date, Look, I'm not looking for this. And I
• 27:00
  Speaker 1: remember when I first started dating this person, I told
• 27:04
  Speaker 1: him in the beginning, there are things that that you
• 27:08
  Speaker 1: don't know and that I really struggle with, and they're
• 27:11
  Speaker 1: going to impact our relationship. And he was so optimistic
• 27:14
  Speaker 1: about it. And I don't blame him for it, but
• 27:16
  Speaker 1: there was that sense of we'll get past it, we'll
• 27:18
  Speaker 1: get over it, and I was just in the back
• 27:20
  Speaker 1: of my head thinking kind of cynically, no, we won't. Yeah,
• 27:24
  Speaker 1: I don't know why. When you said you you tell
• 27:28
  Speaker 1: a person that this is how it is, I just
• 27:30
  Speaker 1: imagine you, like smoking a cigarette, like listening here, like
• 27:37
  Speaker 1: I kind of love it. Honestly, this one guy, a
• 27:40
  Speaker 1: couple of weeks ago, he definitely was not expecting that. Um,
• 27:45
  Speaker 1: But I think it's good to get it out here.
• 27:47
  Speaker 1: Not that I am in any rush for any kind
• 27:49
  Speaker 1: of thing, but I find that people around my age are,
• 27:51
  Speaker 1: and I just don't want to waste any one's time.
• 27:53
  Speaker 1: You know, I fail you. But moving on from my
• 27:57
  Speaker 1: own personal terrible dating skill, you have another example, yeah,
• 28:02
  Speaker 1: I do so. In the book Women and Disabilities that
• 28:06
  Speaker 1: I mentioned earlier, there is an example of a woman
• 28:09
  Speaker 1: named Caroline Humphrey, and they said she was a really
• 28:12
  Speaker 1: great employee, but that she had a history of tardiness
• 28:15
  Speaker 1: and absentee is um because she had grooming and dressing
• 28:18
  Speaker 1: rituals that took a really long time, sometimes all day,
• 28:21
  Speaker 1: and she was a medic culture transcriber, and she suited
• 28:24
  Speaker 1: the hospital that fired her, claiming that the obsessive trade
• 28:27
  Speaker 1: that drove her to have these really long preparation tims,
• 28:30
  Speaker 1: she wasn't accommodated for it as was required and is
• 28:33
  Speaker 1: required under the A d A, which is the Americans
• 28:35
  Speaker 1: with Disabilities Act, which will get into a little bit
• 28:37
  Speaker 1: more later, And a federal judge threw that out of court,
• 28:41
  Speaker 1: but then a three judge panel of the nine US
• 28:43
  Speaker 1: Circuit Courts of Appeals decided in two thousand one that
• 28:46
  Speaker 1: she had a good point, and they sent our case
• 28:48
  Speaker 1: back to trial. It kind of reminds me of I
• 28:52
  Speaker 1: can't believe I'm bringing this up in Scrubs for some reason.
• 28:55
  Speaker 1: I've been making a lot of references to Scrubs lately,
• 28:57
  Speaker 1: and I'm kind of surprised by it. There's an episode
• 28:59
  Speaker 1: where one of the doctors I think he's a guest
• 29:02
  Speaker 1: rotating doctor played by Michael J. Fox, had obsessive compulsive disorder,
• 29:09
  Speaker 1: and it just I think at the end, it was
• 29:12
  Speaker 1: a very poignant moment where it showed how all of
• 29:16
  Speaker 1: these hoops he was going through and all the time
• 29:18
  Speaker 1: he was having to a lot to kind of he
• 29:21
  Speaker 1: wasn't hiding it, but he was trying to make it
• 29:23
  Speaker 1: not impact anyone else. You trying to manage it, yeah,
• 29:27
  Speaker 1: based on other people's expectations, yes, yes, and just seeing
• 29:30
  Speaker 1: his frustration and paint around that. Um it stuck with
• 29:34
  Speaker 1: me clearly because that show has not been on the
• 29:36
  Speaker 1: air from that time. I imagine you have a treasure
• 29:39
  Speaker 1: trove of like random moments and TV and film in
• 29:42
  Speaker 1: your head. I do. I do that. That is what
• 29:44
  Speaker 1: my brain definitely hung on too, of all the things
• 29:48
  Speaker 1: that could have and we have some some stats about
• 29:53
  Speaker 1: how workplaces are so terrible at addressing invisible conditions, especially
• 29:59
  Speaker 1: for women. At first, we're going to pause for a
• 30:01
  Speaker 1: quick break for word from our sponsor, and we're back,
• 30:13
  Speaker 1: Thank you sponsor. So there was this survey that the
• 30:16
  Speaker 1: Working Mother Research Institute did that show their employees are
• 30:19
  Speaker 1: pretty crappy when it comes to addressing disabilities that they
• 30:22
  Speaker 1: can't see as opposed to visible ones. And the study
• 30:25
  Speaker 1: was one that broke things down into, oh, this is
• 30:28
  Speaker 1: what happens to women with disabilities, and one then with
• 30:30
  Speaker 1: invisible illnesses a little bit like there was more that
• 30:33
  Speaker 1: you know could have been done when specifically thinking about
• 30:36
  Speaker 1: the intersection between women and invisible illnesses. But I found
• 30:40
  Speaker 1: that crappiness starts even before someone is highed, like during
• 30:42
  Speaker 1: the recruiting process. Generally, people with invisibility said they were
• 30:46
  Speaker 1: less likely to have accommodations in place when they started
• 30:48
  Speaker 1: their jobs, and we're more likely to have their requests
• 30:51
  Speaker 1: for accommodations rejected than people with visible disabilities, and obviously
• 30:56
  Speaker 1: people need accommodations. Um and thirty one of women with
• 31:00
  Speaker 1: disabilities reported being told their accommodations weren't necessary versus just
• 31:05
  Speaker 1: of men. Yeah, so that's a pretty significant difference. Yeah.
• 31:11
  Speaker 1: And the survey also found that people with invisible disabilities
• 31:14
  Speaker 1: are most frequently turned down on their request for flexible
• 31:17
  Speaker 1: work schedules, which you brought up earlier, um, and schedule
• 31:20
  Speaker 1: modifications and workspace modifications, things that are in a lot
• 31:24
  Speaker 1: of workplaces easy to work with with a person on
• 31:28
  Speaker 1: and as compared to people with visible disabilities, people with
• 31:31
  Speaker 1: invisible disabilities report being less satisfied on the job, having
• 31:35
  Speaker 1: greater difficulty balancing work and personal life demands, and being
• 31:39
  Speaker 1: less optimistic about their ability to advance on work, which
• 31:42
  Speaker 1: you also brought up earlier. Yeah, and we are focusing
• 31:45
  Speaker 1: a lot on the US here, but I do like
• 31:48
  Speaker 1: bringing in data from other countries where we can, so
• 31:52
  Speaker 1: I think it just captures more of the story. And
• 31:55
  Speaker 1: the study I was mentioning earlier showed the same thing
• 31:57
  Speaker 1: in Australia. Um. And I want to bring up the
• 32:00
  Speaker 1: media because again this whole brain we have started to
• 32:03
  Speaker 1: see more honest betrayals of women with invisible illness in
• 32:07
  Speaker 1: our media, but for a long time, sick young attractive
• 32:11
  Speaker 1: women were treated as a narrative device and a story
• 32:14
  Speaker 1: about men learning to really live life, get out there
• 32:17
  Speaker 1: and appreciate it, because obviously all things are in service
• 32:21
  Speaker 1: to men, right. And I haven't seen most of those movies,
• 32:25
  Speaker 1: but I knew exactly what particular genre they were talking
• 32:28
  Speaker 1: about when I read read about that. Um And according
• 32:31
  Speaker 1: to a report, only two point four of films featured
• 32:36
  Speaker 1: a character with disabilities across the board, which is very
• 32:42
  Speaker 1: low and unrepresentative. Yeah, yeah, and I would I would
• 32:48
  Speaker 1: hazard to guess that a lot of them are inaccurate
• 32:51
  Speaker 1: and possibly offensive. Yeah, and I would guess to that
• 32:55
  Speaker 1: a lot, Well, a lot has changed when it comes
• 32:57
  Speaker 1: to mental illness, Yeah, specifically right, Like that's huge category.
• 33:01
  Speaker 1: Obviously there are a lot of things under that umbrella.
• 33:04
  Speaker 1: But oh, you can't see it all the time, you know,
• 33:08
  Speaker 1: So a lot has changed about the way people per
• 33:11
  Speaker 1: tribe mental illness positively, Like, obviously we have a long
• 33:14
  Speaker 1: way to go. Yeah, but yeah, so the law do
• 33:19
  Speaker 1: you want to get into it? Yeah? The law? Okay,
• 33:24
  Speaker 1: I'm not gonna um Like, as you were saying, these
• 33:27
  Speaker 1: things applied globally, but um, workplaces are very different all
• 33:32
  Speaker 1: over the world, and regulation in workplaces are very different
• 33:36
  Speaker 1: all over the world and even in the United States.
• 33:39
  Speaker 1: So long different industries have different policies. Um, thank god,
• 33:44
  Speaker 1: we're no longer employing children legally, we've come aways in
• 33:49
  Speaker 1: the way that we've we've done things when it comes
• 33:50
  Speaker 1: to employment in in the United States. And obviously there's
• 33:54
  Speaker 1: stuff like five seven the minimum wage. But one of
• 33:56
  Speaker 1: the things that has been good over the past, you know,
• 33:59
  Speaker 1: a few days case is that is the Americans with
• 34:01
  Speaker 1: Disabilities Act. So in two thousand and eight, amendments to
• 34:05
  Speaker 1: the a d A brought in the definition of what
• 34:08
  Speaker 1: a disability is. So the point of the a d
• 34:11
  Speaker 1: A is to prohibit discrimination against people with disabilities and
• 34:14
  Speaker 1: ensure that people with disabilities have the same employment opportunities
• 34:18
  Speaker 1: as those without disabilities. So it requires employers to provide
• 34:22
  Speaker 1: quote reasonable accommodations two people with disabilities. And I know,
• 34:28
  Speaker 1: like it gets really darkeny sometimes, like you're probably asking
• 34:31
  Speaker 1: what are reasonable accommodation It sounds like a lot of syllables. Um,
• 34:35
  Speaker 1: but then include things like allowing for a self paced workload,
• 34:39
  Speaker 1: flexible work hours, modifying job responsibilities, and allowing for leave
• 34:44
  Speaker 1: paid and unpaid during periods of hospitalization, assigning and understanding supervisor,
• 34:52
  Speaker 1: getting to empathy. There a little bit um modifying work
• 34:54
  Speaker 1: hours to attend appointments like once with a psychiatrist, providing
• 34:59
  Speaker 1: easy access to supervision and support in the workplace, and
• 35:03
  Speaker 1: providing frequent guidance about job performance. So the A D
• 35:06
  Speaker 1: A doesn't explicitly use the words invisible conditions, but it
• 35:11
  Speaker 1: does still provide protections for people with invisible conditions, as
• 35:15
  Speaker 1: it protects people with a quote physical or mental impairment
• 35:19
  Speaker 1: that substantially limits one are more major life activities of
• 35:23
  Speaker 1: such individual. And I think and thinking about that, and
• 35:28
  Speaker 1: like you said, you didn't even know until like you
• 35:30
  Speaker 1: read a list that you could be considered into something
• 35:34
  Speaker 1: like this. So I think a lot of people don't
• 35:36
  Speaker 1: recognize and don't know when they're in the workplace when
• 35:39
  Speaker 1: they can be protected because they don't know that they're
• 35:41
  Speaker 1: under the protections of the the A D. And there
• 35:44
  Speaker 1: are a lot of caveats and different situations, like it
• 35:47
  Speaker 1: comes on a case by case basis a lot of
• 35:50
  Speaker 1: the time. And but yeah, it's important to know first
• 35:53
  Speaker 1: of all, yes I can be protected, and I I
• 35:56
  Speaker 1: might be protected under the AD. Yeah, it's important. Step one.
• 36:01
  Speaker 1: Knowledge is power. I I will also say that, um,
• 36:05
  Speaker 1: we are really lucky in our office that we have
• 36:07
  Speaker 1: a lot of those things. We have flexible work hours,
• 36:10
  Speaker 1: and we have a pretty good work from home policy,
• 36:14
  Speaker 1: and that is one of the things I am most
• 36:17
  Speaker 1: thankful for at this job. Yeah, and because that's been
• 36:23
  Speaker 1: the policy. I don't know what it was like before
• 36:25
  Speaker 1: I was here, imagine it was a lot of the same,
• 36:27
  Speaker 1: but that's been a policy since I've been here. So
• 36:29
  Speaker 1: I feel like that's definitely a privilege because a lot
• 36:31
  Speaker 1: of the people that's not there, so they have to
• 36:33
  Speaker 1: be the one to create that change. Yeah, so the
• 36:36
  Speaker 1: burden kind of becomes on the person who the burdens
• 36:38
  Speaker 1: are already on to to create change within a workplace.
• 36:42
  Speaker 1: So yeah, we're definitely lucky. Yeah. I if I went
• 36:45
  Speaker 1: to a job after this, I feel like I'm spoiled now.
• 36:47
  Speaker 1: I wouldn't know what to do. Yeah, I have to
• 36:51
  Speaker 1: be here from what hours? What it is blocking in exactly. Yeah.
• 37:01
  Speaker 1: So the ADA has created a lot of meaningful change
• 37:04
  Speaker 1: in society. But just because it exists improvised protections for
• 37:07
  Speaker 1: a lot of people doesn't mean that people with disabilities
• 37:10
  Speaker 1: still don't face discrimination. In practice, it's still hard for
• 37:13
  Speaker 1: people with invisible disabilities to receive protection from discrimination and
• 37:17
  Speaker 1: really feel comfortable disclosing. Um, they are conditioned to their employer.
• 37:22
  Speaker 1: So legislation, like you know, things like the ADA is important,
• 37:26
  Speaker 1: but so is changing the culture around how we treat
• 37:30
  Speaker 1: and think about people who have chronic illnesses and disabilities
• 37:33
  Speaker 1: in the workplace. Yeah, and that's something that's come up
• 37:37
  Speaker 1: several times on the show. Is our conversation around mental
• 37:43
  Speaker 1: health is a great example has been. It's been so
• 37:46
  Speaker 1: stigmatizing and we just haven't talked about it, and it's
• 37:48
  Speaker 1: something at work. You you just kept to yourself. And
• 37:55
  Speaker 1: I think that is changing. I think it's changing very slowly,
• 37:57
  Speaker 1: but it is aging. You know, some typic want a revolution.
• 38:03
  Speaker 1: We can't always get a revolution, right, not always a
• 38:08
  Speaker 1: good example migraines, which is one again, I've had migraines
• 38:14
  Speaker 1: since forever and I didn't know that they would fall
• 38:17
  Speaker 1: under this, and um, they are very painful. And I
• 38:23
  Speaker 1: remember the kid when I would get them, people wouldn't
• 38:27
  Speaker 1: believe me and they thought he was a kid just
• 38:29
  Speaker 1: trying to get out of school. And then you would
• 38:31
  Speaker 1: have a kid who is on the floor and vomiting,
• 38:33
  Speaker 1: And I would always kind of laugh later because I
• 38:37
  Speaker 1: told you he did not believe me. But it is
• 38:41
  Speaker 1: a lot more women suffer from migraines than men, at
• 38:45
  Speaker 1: least I spoth. The numbers show out of the thirty
• 38:47
  Speaker 1: eight million Americans estimated to suffer from migraines, seventy three
• 38:52
  Speaker 1: are women. What that is a lot. I have a
• 38:55
  Speaker 1: lot of friends, a lot of female friends that suffer
• 38:58
  Speaker 1: from migraines, and they can cause visual issues, dizziness, vomiting,
• 39:03
  Speaker 1: intense pain, and other serious symptoms when untreated. Migraines can
• 39:08
  Speaker 1: can make people miss work, oh for sure. And women
• 39:12
  Speaker 1: may experience migraines more frequently because of hormonal changes. Because
• 39:17
  Speaker 1: of misperceptions about the severity of migraines and their conflation
• 39:20
  Speaker 1: with common headaches, many women face discrimination in the workplace
• 39:24
  Speaker 1: when they get migraines. If a woman has to miss
• 39:27
  Speaker 1: work or a meeting because of a migraine, and employer
• 39:29
  Speaker 1: may assume she is irresponsible, inconsiderate, and unable to plan effectively.
• 39:34
  Speaker 1: But I'm just telling you straight up, as someone who
• 39:37
  Speaker 1: has them, You're you're lucky to be able to move
• 39:41
  Speaker 1: like you're you're probably in a dark room, just counting down.
• 39:45
  Speaker 1: I always try to fall asleep first. That's my fall asleep.
• 39:50
  Speaker 1: What do you mean about fall asleep first? Because I
• 39:52
  Speaker 1: get I get like a warning. I know it's coming,
• 39:55
  Speaker 1: and so if I can fall asleep before it hits,
• 39:59
  Speaker 1: sometime times I'll miss it, okay, but not always. I'm
• 40:03
  Speaker 1: horrible at falling asleep anyway. But when I was a kid,
• 40:07
  Speaker 1: every now and then that would work. I'd beat asleepover.
• 40:10
  Speaker 1: Probably I was seen as so weird, but I'd be like,
• 40:13
  Speaker 1: I've got to go bed now. I gotta go to
• 40:14
  Speaker 1: bed now. Now nobody knows, right, nobody, nobody knows what
• 40:19
  Speaker 1: you do. Um. So, depending on the situation, migraines can
• 40:25
  Speaker 1: qualify woman for protection under the A d A. So
• 40:29
  Speaker 1: for your migraines to qualify as a disability under the ADA,
• 40:33
  Speaker 1: you need to show that they're serious enough to limit
• 40:35
  Speaker 1: your ability to perform your job or specific job tests
• 40:40
  Speaker 1: giving your work environment. And you also have to demonstrate
• 40:43
  Speaker 1: to your employer that you're a quote unquote qualified individual
• 40:46
  Speaker 1: with the disability. And if you're applying for a job,
• 40:50
  Speaker 1: or even if you're an existing employee, you have to
• 40:53
  Speaker 1: is your responsibility to tell your employer if you need
• 40:56
  Speaker 1: an accommodation. So you have to disclose it to your
• 40:58
  Speaker 1: employer if you need, in a commendation, and then you
• 41:01
  Speaker 1: can follow up with a request in writing that documents
• 41:04
  Speaker 1: the limitations that you have. That said, like we said earlier,
• 41:08
  Speaker 1: like just because the ADA exist doesn't mean things will
• 41:11
  Speaker 1: happen in practice. Your employer can still let you go.
• 41:14
  Speaker 1: They can still fire you even when you're protected under
• 41:16
  Speaker 1: the ADA for different reasons um and they can refuse
• 41:20
  Speaker 1: your requests for an accommodation as well under certain circumstances.
• 41:24
  Speaker 1: So if your request to deny for reasons that weren't
• 41:27
  Speaker 1: explaining for unknown reasons, you can file what they call
• 41:30
  Speaker 1: a discrimination charge with the US Equal Employment Opportunity Commission
• 41:34
  Speaker 1: or the e o C, or with their state's enforcement agency.
• 41:37
  Speaker 1: So if they dismissed the charge, you can continue on
• 41:41
  Speaker 1: that process and file a lawsuit. So, like I said earlier,
• 41:45
  Speaker 1: like a lot of people don't even know they're protected
• 41:47
  Speaker 1: under the ad A in the first place, or don't
• 41:50
  Speaker 1: think about it. So that's step one in like trying
• 41:53
  Speaker 1: to fight any sort of discrimination against women that comes
• 41:59
  Speaker 1: that has to do with invisible illness UM in the workplace.
• 42:02
  Speaker 1: And you know that also probably means that a lot
• 42:05
  Speaker 1: of people don't know the steps to take. Yeah, you know,
• 42:08
  Speaker 1: we're to start, especially they don't have an HR department. Yeah,
• 42:12
  Speaker 1: so yeah, I think it's kind of important to just
• 42:15
  Speaker 1: get that out there. I agree, And I know that
• 42:19
  Speaker 1: this sounds daunting and stressful, but it is something that
• 42:26
  Speaker 1: I think it's worth pursuing. It's really we've touched before
• 42:29
  Speaker 1: on how when you're not believed and you see your
• 42:33
  Speaker 1: story like delegitimized and invalidated on on a public stage
• 42:40
  Speaker 1: or just with people that you know, how that can
• 42:43
  Speaker 1: be damaging for you. So I know that it's scary
• 42:50
  Speaker 1: to get your request approved to pursue the process, but
• 42:54
  Speaker 1: I do think it's worth at least knowing about Yeah. Yeah,
• 42:58
  Speaker 1: And a lot of people who have filed discrimination charges
• 43:03
  Speaker 1: with the eo C between two thousand and five and
• 43:06
  Speaker 1: two tho did have invisible disabilities UM. So the most
• 43:10
  Speaker 1: commonly sided conditions and those charges that were filed were
• 43:14
  Speaker 1: invisible disabilities, according to the analysis that recharchers did at
• 43:17
  Speaker 1: Cornell University's Employment and Disability Institute. So there is hope
• 43:22
  Speaker 1: there's hope. I mean we can call it that. Yeah,
• 43:26
  Speaker 1: I don't know. I don't mean to be cynical. Um, yeah,
• 43:29
  Speaker 1: there's there are protections for us are a lot of
• 43:32
  Speaker 1: people are using them already, So I hope that gives
• 43:35
  Speaker 1: people who feel unprotected at work a little bit of
• 43:39
  Speaker 1: hope too. Yeah. So on what you were saying just
• 43:43
  Speaker 1: now about it being daunting. Um, A huge conversation and
• 43:46
  Speaker 1: thinking about women invisible illness in the workplace is disclosure. So,
• 43:51
  Speaker 1: as I said, you have to disclose, um, your illness
• 43:56
  Speaker 1: or your disability if you want to be if you
• 43:58
  Speaker 1: want to receive accommodations in the workplace, and that's not
• 44:02
  Speaker 1: an easy task all the time, especially as a woman. Yeah. Um,
• 44:08
  Speaker 1: so if they don't, if people don't disclose their disabilities
• 44:13
  Speaker 1: at work, it could affect their performance. This is based
• 44:15
  Speaker 1: on data, and their colleagues may assume it's a matter
• 44:18
  Speaker 1: of that person's competence. So that burden of concealing a
• 44:23
  Speaker 1: disability really creates strain and social in work situations that
• 44:28
  Speaker 1: might negatively affect the health and well being of a person.
• 44:32
  Speaker 1: And in contrast, that have shown that disclosure relieves the
• 44:36
  Speaker 1: strain of hiding the condition which we talked about earlier,
• 44:39
  Speaker 1: like how much labor that is, and increases the likelihood
• 44:43
  Speaker 1: that the person will find and develop a social support
• 44:46
  Speaker 1: network with others who might have similar conditions or experiences. Yeah,
• 44:51
  Speaker 1: and I talked about in our episode on on CPTSD
• 44:55
  Speaker 1: how having that conversation. I didn't have to strength to
• 44:58
  Speaker 1: have that conversation. And I think I'm almost positive that
• 45:04
  Speaker 1: my boss at the time would have totally been on board.
• 45:07
  Speaker 1: She would have been a really great, helpful supportive system
• 45:10
  Speaker 1: for me. She would have worked to make things easier
• 45:14
  Speaker 1: for me. And looking back, I wish I had had
• 45:18
  Speaker 1: the strength to do it. I didn't, but I wish
• 45:21
  Speaker 1: that I had. But that's okay though, you know, like
• 45:23
  Speaker 1: a lot of people aren't there yet too people would
• 45:27
  Speaker 1: connect with you on that level. Yeah, And I think
• 45:29
  Speaker 1: that is something to to keep in mind, is it's
• 45:34
  Speaker 1: not easy, and don't be too hard on yourself. If right.
• 45:40
  Speaker 1: It's kind of like women already have to maintain a
• 45:43
  Speaker 1: certain image in the workplace of being twice as strong
• 45:47
  Speaker 1: and yeah, twice as productive and and having to disclose
• 45:52
  Speaker 1: something that makes you quote unquote look weaker in other
• 45:55
  Speaker 1: people's eyes. Um, it's not an easy task because the
• 46:01
  Speaker 1: thing is, people with invisible disabilities still don't disclose their conditions,
• 46:06
  Speaker 1: especially if they're young and have recently acquired the disability.
• 46:10
  Speaker 1: So that's because disclosure still comes with risks and disclosing
• 46:14
  Speaker 1: could harm your competitiveness and workplace relationships. So in that
• 46:18
  Speaker 1: survey that we talked about earlier, the Working Mother survey
• 46:22
  Speaker 1: of people with invisible illnesses, said they were comfortable discussing
• 46:26
  Speaker 1: their disability with HR or coworkers. So that's a lot
• 46:28
  Speaker 1: of people who still don't feel comfortable with it, and
• 46:33
  Speaker 1: to have that conversation, you know, you have to be
• 46:35
  Speaker 1: at a certain point. That's because they still may face
• 46:39
  Speaker 1: prejudice or negative judgment for others. Like if you think
• 46:42
  Speaker 1: about something like mental illness, Like there's still a lot
• 46:44
  Speaker 1: of stigma around mental illness, just thinking about the way
• 46:47
  Speaker 1: we speak about it, just our lacks language and saying
• 46:52
  Speaker 1: you know, things terms that really you know, using them
• 46:57
  Speaker 1: willy nilly essentially, just we know that general culture around
• 47:00
  Speaker 1: mental illness isn't accepting. So also disclosure can raise questions
• 47:07
  Speaker 1: about whether a disability is quote unquote legitimate. So in
• 47:11
  Speaker 1: addition to dealing with the stigma that's associated with having
• 47:15
  Speaker 1: a disability. People with invisible disabilities risk being viewed as
• 47:19
  Speaker 1: someone who's falsely seeking like some sort of like gain
• 47:23
  Speaker 1: out of telling people that they have an issue, like
• 47:26
  Speaker 1: we want to be pitied or have special treatment. Yeah,
• 47:30
  Speaker 1: so other people in the workplace can call them complainers, hypochondriacts,
• 47:34
  Speaker 1: attention seekers, and which can cause even more distress on
• 47:39
  Speaker 1: a person who's already dealing with some sort of condition
• 47:42
  Speaker 1: or illness in the first place. And even employees with
• 47:46
  Speaker 1: disabilities maybe monitored more closely than others or harassed, which
• 47:51
  Speaker 1: is ridiculous. Absolutely, I I don't understand that urge people
• 47:58
  Speaker 1: feel to have you proved to them that you're not
• 48:03
  Speaker 1: trying to fake and I don't know, get some kind
• 48:06
  Speaker 1: of special treatment that to me doesn't make any sense.
• 48:11
  Speaker 1: I feel like in general, people, I really think you
• 48:14
  Speaker 1: should do a lot of work to to live your life.
• 48:16
  Speaker 1: Like why I go through it? Why would I go
• 48:17
  Speaker 1: through all the trouble of pretending to have a disability
• 48:22
  Speaker 1: like I have, I have issues, I already have issues
• 48:26
  Speaker 1: I have to deal with. Why would I make this up? Right?
• 48:31
  Speaker 1: It doesn't make sense? And like you were saying, uh,
• 48:36
  Speaker 1: something that I found a common thread I found in
• 48:39
  Speaker 1: this research is when people disclose, they do feel that
• 48:45
  Speaker 1: they have to work harder to show like, see I
• 48:51
  Speaker 1: can still do do my work. And and to your point,
• 48:55
  Speaker 1: women already have that, so it's like compound double indemnited.
• 49:00
  Speaker 1: I don't know if that's the right word, yes, but
• 49:02
  Speaker 1: I think we all understand you're coming from. So when
• 49:06
  Speaker 1: women specifically deal with the symptoms of invisible illnesses at work,
• 49:11
  Speaker 1: like frequently being like to work because your O C
• 49:14
  Speaker 1: D mean took you longer time to prepare, like we
• 49:16
  Speaker 1: talked about earlier, or maybe going to the bathroom often,
• 49:19
  Speaker 1: or maybe needing something like a text reader, they face
• 49:22
  Speaker 1: these gender stereotypes of women being lazy, or being incompetent,
• 49:27
  Speaker 1: or being unprofessional, so they may turn to like bias avoidance,
• 49:31
  Speaker 1: which is trying to avoid all of those stigmas, so
• 49:34
  Speaker 1: they'll just grin and bear it because they're afraid their
• 49:37
  Speaker 1: needs will be perceived as weaknesses and they may lose
• 49:40
  Speaker 1: their jobs. So that's one thing that in the research,
• 49:45
  Speaker 1: it seems like a lot of women are afraid of
• 49:48
  Speaker 1: is losing their jobs, and a lot of job markets
• 49:49
  Speaker 1: are precarious, so it makes a lot of sense. Um,
• 49:53
  Speaker 1: and the job is probably the thing in the first
• 49:55
  Speaker 1: place as able to help them afford treatment for the
• 49:58
  Speaker 1: condition they get. So just think of all the pressure,
• 50:02
  Speaker 1: like just closing puts on a woman because of that,
• 50:05
  Speaker 1: it feels like this is double ledged work, like you're
• 50:07
  Speaker 1: damned if you do when you're damned if you don't. Yeah,
• 50:10
  Speaker 1: it's it's like a weird never ending the snake eating
• 50:15
  Speaker 1: the tail. Yes, thank you, thank you, because like you're saying,
• 50:24
  Speaker 1: when it was all met at the beginning of not
• 50:25
  Speaker 1: talking about it in the workplace, but we're talking about
• 50:27
  Speaker 1: the workplace. It it's we need to have these conversations more.
• 50:32
  Speaker 1: But you can't blame people for not having the conversations
• 50:36
  Speaker 1: where yeah, it's not the job of the people to
• 50:42
  Speaker 1: institute these types of changes in the workplace. Um. So,
• 50:47
  Speaker 1: there are a ton of conditions that disproportionately affect young women,
• 50:52
  Speaker 1: specifically like autoimmune diseases and millennials, which is like eighteen
• 50:58
  Speaker 1: to thirty six at the of this survey. I know
• 51:00
  Speaker 1: it changes all the time and different people say different things,
• 51:03
  Speaker 1: but I think, specifically and this research are the largest
• 51:07
  Speaker 1: generation in the U S workforce. So a lot of
• 51:10
  Speaker 1: working women are bound to have disabilities. Yet people still
• 51:15
  Speaker 1: disbelieve young women who have health issues based on assumptions
• 51:19
  Speaker 1: that young women should be healthy. So that can really
• 51:22
  Speaker 1: make disclosure feel kind of like pointless. So even doctors
• 51:27
  Speaker 1: like you were you brought up earlier, Even doctors disbelieve
• 51:30
  Speaker 1: women who say they're sick when they can't see or
• 51:34
  Speaker 1: explain issue. So there's a bitch Media article in which
• 51:38
  Speaker 1: the author, Kate Horowitz, describes going to the doctor after
• 51:42
  Speaker 1: she felt weak, fatigued, and dizzy and hot with headaches
• 51:46
  Speaker 1: for a while, and her doctor, a guy, a dude,
• 51:50
  Speaker 1: told her she had conversion disorder and that she had
• 51:53
  Speaker 1: a traumatic event in her childhood that she converred it
• 51:55
  Speaker 1: into performing the illness like she was making it up.
• 51:58
  Speaker 1: So she didn't find out that she had hypermobile Eller's
• 52:01
  Speaker 1: downlow syndrome until six years later when she was in
• 52:05
  Speaker 1: grad school. And this story, I know a lot of
• 52:08
  Speaker 1: women have it, but I can totally relate to it
• 52:11
  Speaker 1: because I've been through that same situation where a doctor
• 52:16
  Speaker 1: really discounted something that was real that was going in
• 52:18
  Speaker 1: my life. So when I was in college, I went
• 52:20
  Speaker 1: to the emergency room when I had a panic attack,
• 52:24
  Speaker 1: but it was like it happened at the same time
• 52:28
  Speaker 1: that I really felt like I couldn't breathe, and so
• 52:31
  Speaker 1: I was telling the doctor, I feel like I can't breathe,
• 52:34
  Speaker 1: like there's something going on. And after waiting a really
• 52:38
  Speaker 1: long time in the e er, which I will break
• 52:41
  Speaker 1: from this a bit to say that women spend more
• 52:45
  Speaker 1: time than men. They wait more time than men when
• 52:47
  Speaker 1: they go to the e r um, which goes for
• 52:51
  Speaker 1: this goes back to this idea of thinking women's pain
• 52:54
  Speaker 1: isn't as serious. But so, yeah, I saw the doctor
• 52:58
  Speaker 1: and my mom was are with me, I think, and
• 53:02
  Speaker 1: the doctor said he after notice, essentially, is anything going
• 53:09
  Speaker 1: on in your life right now? It's probably just anxiety.
• 53:14
  Speaker 1: Gave me an anti anxiety pill that made me feel
• 53:18
  Speaker 1: like a marshmallow and just kind of like sent me
• 53:21
  Speaker 1: on my way, and I was like, I still feel
• 53:23
  Speaker 1: like I can't breathe. Yeah, I was like, maybe that
• 53:27
  Speaker 1: was a panic attack, but I still feel like I
• 53:31
  Speaker 1: can't breathe. And so it took me going to a
• 53:34
  Speaker 1: couple of places and finally coming to this black woman
• 53:37
  Speaker 1: doctor who I can't even remember what she gave me,
• 53:41
  Speaker 1: but found out that I had some sort of like
• 53:44
  Speaker 1: swelling or inflammation of the esophagus. So it's like this
• 53:51
  Speaker 1: is like right online, like with the data, so that
• 53:56
  Speaker 1: can be treated. Right. So Yeah, it's just it happens
• 54:01
  Speaker 1: all the time. Like I'm not the only person that
• 54:03
  Speaker 1: this happens to. No. Uh, it's one of the most
• 54:07
  Speaker 1: frustrating things to me. We did an episode on doctors
• 54:11
  Speaker 1: not believing women, and I think on average it takes
• 54:15
  Speaker 1: nine years longer for a woman to get diagnosed. I
• 54:18
  Speaker 1: think it was indometrios is specifically, but diagnosis takes longer,
• 54:21
  Speaker 1: getting treated in the emergency room takes longer, and women die. Uh,
• 54:26
  Speaker 1: the heart diseases the example specifically, they gave um it
• 54:31
  Speaker 1: leads to death. The fact that doctors are not taking
• 54:34
  Speaker 1: their their pain and their symptoms seriously, right but right, Oh, yeah,
• 54:38
  Speaker 1: that's a big point. Yeah, it's irreversible. You know, the
• 54:42
  Speaker 1: damage that a person didn't do by not diagnosing someone earlier. Yeah,
• 54:49
  Speaker 1: I think of all the years that you've spent needlessly
• 54:54
  Speaker 1: in pain or struggling with something in this case. I lately,
• 54:58
  Speaker 1: I've been struggling with anger outlets for anger, and I
• 55:04
  Speaker 1: just can't stop thinking about how much we prioritize male
• 55:08
  Speaker 1: pleasure success at the expense of female pain, and we
• 55:17
  Speaker 1: legitimize one and we lawed one and the other is
• 55:20
  Speaker 1: like just shut up right, just go away. Anyway, we're
• 55:24
  Speaker 1: going off on a slight tangent, but it has been
• 55:26
  Speaker 1: something I've been thinking about a lot lately, and it's
• 55:31
  Speaker 1: it's one of the things that it makes me angry,
• 55:33
  Speaker 1: like immediately how quickly we just don't believe or even
• 55:36
  Speaker 1: if we like say, oh yeah, I remember once I
• 55:39
  Speaker 1: think I've told this story on the show before too.
• 55:42
  Speaker 1: I had like these severe headaches where I was passing
• 55:45
  Speaker 1: out and they sent me to to a neurologists and
• 55:49
  Speaker 1: I remember him saying, well, you're just gonna have to
• 55:50
  Speaker 1: find a way to live with it. So it was like,
• 55:53
  Speaker 1: it's acceptable for women to be in pain. I think
• 55:56
  Speaker 1: this is sort of like okay, Well, that goes to
• 56:00
  Speaker 1: the idea that women are supposed to be strong, like
• 56:04
  Speaker 1: we have babies, we have a high pain tolerance, and
• 56:08
  Speaker 1: obviously we can deal with this like we're superhuman. And
• 56:12
  Speaker 1: that's specifically for about black women. That's the stereotype that
• 56:16
  Speaker 1: we face, like we're supposed to be superwomen. Were supposed
• 56:20
  Speaker 1: to be superheroes. There's myth around us being this magical
• 56:24
  Speaker 1: and all powerful and able to take on all of
• 56:28
  Speaker 1: this pain and bear the burden of pain for everyone else. Yeah.
• 56:37
  Speaker 1: So when we think about far By Mile, just specifically,
• 56:40
  Speaker 1: a lot of women really end up what is called
• 56:43
  Speaker 1: catastrophizing about the condition to really emphasize how serious it is,
• 56:49
  Speaker 1: and people with invisible illnesses in general really need to
• 56:53
  Speaker 1: repeatedly remind others about their impairments because not every day
• 56:57
  Speaker 1: is the same. Yeah, I I know exactly what that is,
• 57:02
  Speaker 1: because again, going back to my migraines, sometimes I wanted
• 57:07
  Speaker 1: I wanted it to get worse just so people would
• 57:09
  Speaker 1: believe me, Like if I vomited then of course, Yeah, yep,
• 57:13
  Speaker 1: clearly she's not making it up then, But that the
• 57:15
  Speaker 1: headache part, the invisible part, People very ready to dismiss that.
• 57:20
  Speaker 1: So I understand this catastrophe catastrophizing. Yeah, that's an interesting
• 57:27
  Speaker 1: I've never seen that before. It is it's a mouthful.
• 57:31
  Speaker 1: And going back to our Painful Sex Women in Pain episode,
• 57:35
  Speaker 1: this has come up time and time again the issue
• 57:37
  Speaker 1: of not believing women when they're in pain, um, when
• 57:40
  Speaker 1: they say they have a disability. It comes down to
• 57:43
  Speaker 1: how women look and how they present or don't present,
• 57:45
  Speaker 1: and of how the other person is taking that in.
• 57:49
  Speaker 1: And there's the added emotional labor cost and pressure for folks,
• 57:53
  Speaker 1: especially women who are often perceived as weaker, to hide
• 57:56
  Speaker 1: it or yeah again, to prove that they deserve the job,
• 57:59
  Speaker 1: that they're working hard through this there. Yeah, they're real
• 58:03
  Speaker 1: go getters. And but don't go too far because then
• 58:07
  Speaker 1: you're a bitch. Yes, And often women who disclose are
• 58:12
  Speaker 1: told to take time off to get well. I saw
• 58:16
  Speaker 1: that come up a lot, which isn't gonna happen if
• 58:18
  Speaker 1: you have a chronic illness. It's in the name um or.
• 58:21
  Speaker 1: They might be accused of, yeah, exaggerating, being a hypochondriac, lazy,
• 58:26
  Speaker 1: complain too much and yet and yeah, at the same time,
• 58:31
  Speaker 1: also are accused of not being a better advocate for themselves.
• 58:35
  Speaker 1: People want their cake and to eat it too. Ah
• 58:42
  Speaker 1: and yeah, it's it's kind of a paradox. If you
• 58:44
  Speaker 1: don't display emotion, you aren't believed. If you do, your
• 58:46
  Speaker 1: hysterical So again, there's a lot of tight ropes were
• 58:49
  Speaker 1: bringing up here where you can't there's no winning, right,
• 58:54
  Speaker 1: and there's this study that really put it used word
• 58:58
  Speaker 1: that I thought was really appropriate is that disclosure can
• 59:03
  Speaker 1: be a sort of dance um for women with fib
• 59:06
  Speaker 1: A mile just specifically in the workplace, because in reality,
• 59:10
  Speaker 1: disclosures like a lot more complicated than just a planned
• 59:13
  Speaker 1: action that's done to get accommodations. Oftentimes, disclosure is like
• 59:18
  Speaker 1: improvised and it happens in everyday conversations when somebody needs
• 59:23
  Speaker 1: something in that moment and risks are taking into consideration
• 59:26
  Speaker 1: and risk avoidance and risk reduction. So that happened when
• 59:32
  Speaker 1: women in that study needed to explain, like there there
• 59:36
  Speaker 1: are a few instances in which that happened in the
• 59:38
  Speaker 1: study for the women, and that's when they needed to
• 59:41
  Speaker 1: explain their fluctuating workability, when others need it reminding about
• 59:45
  Speaker 1: their invisible impairments and when their work relationship changed. So
• 59:50
  Speaker 1: because they can't control how people respond it to their disclosure,
• 59:55
  Speaker 1: they controlled whether they divulge the stigma and how much
• 59:58
  Speaker 1: impairment they revealed and how much they expose themselves to scrutiny.
• 1:00:03
  Speaker 1: Mm hmm. So there is hoping this as well, um
• 1:00:07
  Speaker 1: that more companies are encouraging people to disclose their disability
• 1:00:14
  Speaker 1: we have a little more for all of you listeners,
• 1:00:17
  Speaker 1: but first we have one more quick break for word
• 1:00:20
  Speaker 1: from our sponsor M and we're back. Thank you sponsor.
• 1:00:32
  Speaker 1: So something that really comes up and thinking about this
• 1:00:35
  Speaker 1: conversation of invisible illnesses and disabilities in the workplace is
• 1:00:42
  Speaker 1: this idea of privilege or passing that like, having an
• 1:00:46
  Speaker 1: invisible illness can sometimes function as passing as someone without disabilities.
• 1:00:53
  Speaker 1: So some ways of passing can include not disclosing certain
• 1:00:59
  Speaker 1: information about yourself, for like avoiding having adaptive and assistive
• 1:01:03
  Speaker 1: aids like canes, are walkers, or wheelchairs, or like only
• 1:01:07
  Speaker 1: telling a few people about your illness or disability so
• 1:01:13
  Speaker 1: no one can immediately tell that you have a disability
• 1:01:17
  Speaker 1: or illness if it's invisible, so you don't often have
• 1:01:20
  Speaker 1: to face the same stigma or judgment and problematic actions
• 1:01:27
  Speaker 1: that people with readily visible disabilities too. So that's that
• 1:01:31
  Speaker 1: functions that as a sort of privilege. But on the
• 1:01:34
  Speaker 1: other hand, no one can tell immediately that you have
• 1:01:37
  Speaker 1: a disability or illness, so they may think that the
• 1:01:40
  Speaker 1: condition can't be that bad if it even exists at all,
• 1:01:43
  Speaker 1: So it can kind of feel like people with invisible
• 1:01:46
  Speaker 1: disabilities fit in with neither people with disabilities nor people
• 1:01:50
  Speaker 1: without disabilities, which can feel kind of alienating sometimes and
• 1:01:56
  Speaker 1: passing quote unquote, passing can enforce structures that say a
• 1:02:00
  Speaker 1: person must be able body to be treated well. Yeah,
• 1:02:05
  Speaker 1: and it's not always a choice though, And when it
• 1:02:08
  Speaker 1: is a choice, it's just that because a lot of
• 1:02:10
  Speaker 1: the time, passing can be a protective strategy. In other
• 1:02:14
  Speaker 1: times people are passed or I'm like it's other people
• 1:02:17
  Speaker 1: who assume that a person doesn't have the disability right.
• 1:02:23
  Speaker 1: In an article on the Feminist with Disabilities for a
• 1:02:26
  Speaker 1: Way Forward blog, and author describes the guilt of passing.
• 1:02:30
  Speaker 1: But sometimes I don't feel quite real, or as though
• 1:02:33
  Speaker 1: I'm cheating, an intruder in someone else's identity with regard
• 1:02:36
  Speaker 1: to being disabled. That says some nasty consequences. In the past,
• 1:02:40
  Speaker 1: I've gotten needs met, either because I can't bear to
• 1:02:43
  Speaker 1: out myself or because someone doesn't quite think I'm truthful.
• 1:02:46
  Speaker 1: Passing doesn't mean I'm not struggling to remain standing while
• 1:02:49
  Speaker 1: we're talking. I struggle with passing and being passed. Sometimes
• 1:02:53
  Speaker 1: I try and do it to feel safer, never safe,
• 1:02:56
  Speaker 1: and lose my integrity. Sometimes I am passed, and it's
• 1:02:58
  Speaker 1: a mix of delight and a loss and a damage.
• 1:03:01
  Speaker 1: Whatever I do, it's never enough. I'm never enough. I
• 1:03:05
  Speaker 1: just found that quote so impactful just because it's really complicated,
• 1:03:10
  Speaker 1: Like it's complex, and that struggle is a struggle in
• 1:03:14
  Speaker 1: everyday life for people with invisible disabilities, and it's a
• 1:03:18
  Speaker 1: struggle in the workplace as well as an extension of that.
• 1:03:21
  Speaker 1: So it goes back to the idea of disclosure, Like
• 1:03:24
  Speaker 1: you're already facing these issues that you just spoke about,
• 1:03:30
  Speaker 1: and on top of that, you're a woman, you know,
• 1:03:32
  Speaker 1: so you just have to deal with a lot of things.
• 1:03:35
  Speaker 1: And this is something that I feel guilty about all
• 1:03:37
  Speaker 1: the time too, because I have a mess or multiple scurossis,
• 1:03:41
  Speaker 1: and it doesn't always present itself and everybody it's It
• 1:03:45
  Speaker 1: really varies wildly from person to person how it presents.
• 1:03:49
  Speaker 1: And it's also like a progressive disease. So you can
• 1:03:53
  Speaker 1: be a certain way at one point in your life
• 1:03:55
  Speaker 1: and invisible and be visible because you're using an assistive
• 1:03:59
  Speaker 1: aid at an other point in your life. And I
• 1:04:01
  Speaker 1: feel because I'm at a place where you can't tell
• 1:04:05
  Speaker 1: at all in certain situations, you can only it sometimes
• 1:04:09
  Speaker 1: has flare ups, so in that case it can become visible.
• 1:04:13
  Speaker 1: But because you can't really see my illness, I often
• 1:04:16
  Speaker 1: feel so guilty and don't feel like I fit into
• 1:04:20
  Speaker 1: one group or another. I'm not quite like like the
• 1:04:24
  Speaker 1: Arthur says, whatever I do, it's never enough, I'm never
• 1:04:27
  Speaker 1: enough because I don't feel I have this privilege to
• 1:04:32
  Speaker 1: where people can't tell. So I'm not necessarily a person
• 1:04:35
  Speaker 1: with disabilities, but in the moments where I am more
• 1:04:38
  Speaker 1: affected by it in the smaller ways, in the everyday ways,
• 1:04:42
  Speaker 1: and in the more noticeable ways, and I feel like
• 1:04:45
  Speaker 1: I should say something about this, like I should be
• 1:04:47
  Speaker 1: louder about this, for all the people who have these
• 1:04:50
  Speaker 1: illnesses that they deal with that nobody can see. So
• 1:04:53
  Speaker 1: I just thought, you know, this idea of having privilege
• 1:04:58
  Speaker 1: and not having a privilege at the same on because nobody,
• 1:05:01
  Speaker 1: when nobody knows, how are they going to address it?
• 1:05:04
  Speaker 1: So it goes back to that idea of empathy and
• 1:05:07
  Speaker 1: not assuming. Yeah, absolutely, and it is. It is complicated,
• 1:05:14
  Speaker 1: and I have often felt that way to where I'm
• 1:05:18
  Speaker 1: almost embarrassed to include myself. I don't feel like I'm
• 1:05:22
  Speaker 1: suffering enough. Yeah, that's a perpetual problem for women. Right. Yeah, Yeah,
• 1:05:30
  Speaker 1: we're touching on a lot of things in this episode. Um,
• 1:05:33
  Speaker 1: but we do have some some hopeful notes to end on,
• 1:05:37
  Speaker 1: some ways to hopefully create change. One. I mean to
• 1:05:44
  Speaker 1: start off with it, it is a feminist issue and
• 1:05:46
  Speaker 1: we should treat it as such. Yes, yes, and share
• 1:05:48
  Speaker 1: people with disabilities in general are not invisible, right because
• 1:05:53
  Speaker 1: we're speaking specifically about invisible illnesses today, but in general,
• 1:05:59
  Speaker 1: people disabilities are invisible in a lot of conversations, including
• 1:06:03
  Speaker 1: the feminist one, so that should be said. Um. And
• 1:06:08
  Speaker 1: also we need to educate people on and raise awareness
• 1:06:11
  Speaker 1: of invisible illnesses. The Invisible Disability Project says there quote
• 1:06:16
  Speaker 1: social cultural movement and an educational media project that consciously
• 1:06:20
  Speaker 1: disrupts invisibility imposed upon unseen disabilities at the intersections of race, class, gender,
• 1:06:25
  Speaker 1: and sexuality. So they're just one organization that's bringing visibility
• 1:06:30
  Speaker 1: to people with invisible illnesses. And then employers can take
• 1:06:35
  Speaker 1: steps to address the needs of people with invisible disabilities,
• 1:06:38
  Speaker 1: like providing flexibility and centralizing accommodation funding. Right. And the
• 1:06:44
  Speaker 1: thing about that too is that a lot of people
• 1:06:48
  Speaker 1: may think that it's expensive to accommodate Uh, person with
• 1:06:52
  Speaker 1: disabilities needs in the office, and that's not the case
• 1:06:56
  Speaker 1: um at all a lot of the time. So that's
• 1:06:58
  Speaker 1: not an excuse. And another thing that we can think
• 1:07:02
  Speaker 1: about is disclosure, which we talked about earlier. Removes that
• 1:07:05
  Speaker 1: emotional labor of bearing the burden of like really juggling
• 1:07:09
  Speaker 1: that illness without having the combinations that you need to
• 1:07:12
  Speaker 1: get your work done, and changing that workplace culture so
• 1:07:16
  Speaker 1: women feel comfortable disclosing as they feel fit. And I
• 1:07:19
  Speaker 1: know make it sound easy by squeezing it into one line,
• 1:07:25
  Speaker 1: and it's not that easy, um, But it's something we
• 1:07:28
  Speaker 1: can continue to work on. And when making recommendations, professionals
• 1:07:33
  Speaker 1: shouldn't imply that disclosure is something that only has positive consequences.
• 1:07:38
  Speaker 1: They should really think about weighing the risks and learn
• 1:07:42
  Speaker 1: from their clients about how their workplace environment is and
• 1:07:46
  Speaker 1: the relationships in their workplace as well as what they
• 1:07:49
  Speaker 1: think about their risk of disclosure. Yeah, it kind of
• 1:07:55
  Speaker 1: reminds me of, um, the conversation around sexual harassment and
• 1:07:59
  Speaker 1: reporting to h ARE and how that can have negative
• 1:08:03
  Speaker 1: impacts on whoever was reporting that. It's not always a
• 1:08:07
  Speaker 1: positive thing, and we need to look at why that
• 1:08:09
  Speaker 1: is and try to improve that. And another thing that
• 1:08:12
  Speaker 1: we've been talking about a lot lately is destigmatizing mental
• 1:08:17
  Speaker 1: health and all the conversations around that too. And I've
• 1:08:22
  Speaker 1: just been thinking about how in this conversation and this
• 1:08:26
  Speaker 1: whole thing, we're penalizing people for being sick for something
• 1:08:31
  Speaker 1: that's out of their control and then telling them they're
• 1:08:33
  Speaker 1: lucky to have a job, which is terrible. Um, so
• 1:08:37
  Speaker 1: that needs to change and talking about this and hopefully
• 1:08:44
  Speaker 1: bringing it up. I I learned a lot doing the
• 1:08:47
  Speaker 1: research for this episode, and I I think that a
• 1:08:50
  Speaker 1: lot of listeners will learn I have learned something hopefully
• 1:08:54
  Speaker 1: if we've done our job, and I think that is
• 1:08:58
  Speaker 1: that is an important step that is up one is
• 1:09:00
  Speaker 1: to start talking about this and to realize how many
• 1:09:05
  Speaker 1: people are impacted for these things. I agree with you, Annie, Yeah,
• 1:09:13
  Speaker 1: thank you, thank you. Yeah. Creating a better workspace for everyone,
• 1:09:19
  Speaker 1: or workplace and workspace for women with disabilities creates a
• 1:09:24
  Speaker 1: better workplace in general. It does. It's important to remember
• 1:09:29
  Speaker 1: that this isn't some isolated issue that only revolves around
• 1:09:35
  Speaker 1: certain sets of people. Like the work that we need
• 1:09:38
  Speaker 1: to do and creating a better workplace for women with
• 1:09:41
  Speaker 1: disabilities is work that improves industries and workplaces in general.
• 1:09:48
  Speaker 1: H And I would imagine if I was running a company,
• 1:09:52
  Speaker 1: I would want I would be a good boss, and
• 1:09:56
  Speaker 1: I would want people to be happy. But also I
• 1:09:58
  Speaker 1: would imagine you would want people to be the most
• 1:10:00
  Speaker 1: productive and best they can be. Right in the irony
• 1:10:03
  Speaker 1: of that is that people think when they I'm generalizing,
• 1:10:07
  Speaker 1: but a lot of employers think that when they hire
• 1:10:10
  Speaker 1: people who have disabilities, are when a person with disabilities
• 1:10:14
  Speaker 1: discloses their condition, that that means they're going to be
• 1:10:17
  Speaker 1: less productive. And that perspective needs to switch to to
• 1:10:22
  Speaker 1: what can I do as an employer to make sure
• 1:10:24
  Speaker 1: that all of my employees are the most productive that
• 1:10:27
  Speaker 1: they can be m And it really it's not difficult.
• 1:10:32
  Speaker 1: It doesn't have to be right, really doesn't, It really doesn't.
• 1:10:37
  Speaker 1: That brings us to the end of this episode. Thank
• 1:10:40
  Speaker 1: you so much Eaves for being a co host with
• 1:10:44
  Speaker 1: me this week. Thank you for inviting me onto this warm,
• 1:10:48
  Speaker 1: lovely I don't know what I'm trying to say. Thank
• 1:10:52
  Speaker 1: you for inviting me onto Sminty. It's been it's been
• 1:10:57
  Speaker 1: really enlightening to talk about this and it feels like
• 1:11:01
  Speaker 1: a privilege to be able to talk about this in
• 1:11:03
  Speaker 1: the workplace, and I'm happy that we got to do
• 1:11:06
  Speaker 1: it today. I am too, and please come back any time,
• 1:11:12
  Speaker 1: pitch me any of your ideas. We'd love to have
• 1:11:15
  Speaker 1: you again, and we would also love to hear from you. Listeners.
• 1:11:22
  Speaker 1: You can email us at mom Stuff at how stuff
• 1:11:25
  Speaker 1: works dot com. You can find us on social media
• 1:11:28
  Speaker 1: on Twitter at mom Stuff Podcast and on Instagram at
• 1:11:31
  Speaker 1: stuff mom Never Told You. Thanks to you for listening,
• 1:11:34
  Speaker 1: and thanks as always to reproducer Andrew Howard.