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Book Club: Care Work · Stuff Mom Never Told You

0:05
Speaker 1: Hey, this is Annie and Samantha and welcome to Stephan.
0:07
Speaker 1: Never told you a protection of iHeartRadio, and today we
0:20
Speaker 1: are coming at you. That sounds kind of intimidating. We're
0:24
Speaker 1: coming to you with another episode of book Club. Content
0:31
Speaker 1: warning for a brief discussion of sexual abuse, ableism, physical abuse, pain, suicidality.
0:38
Speaker 1: We're not going to talk too much in depth about
0:40
Speaker 1: any of those things, but just to put that out there. Also,
0:43
Speaker 1: this is a very quote heavy episode. I think I've
0:46
Speaker 1: described this before, but a lot of times when we
0:49
Speaker 1: do book Club, I read the book and as I
0:53
Speaker 1: go through, I just copy paste quotes as I'm reading
0:58
Speaker 1: because I'm like, oh, this is relevant, this is relevant.
1:00
Speaker 1: And then at the end I go back and try
1:04
Speaker 1: to make it so it's not a huge thing. This one.
1:07
Speaker 1: Originally it was fifteen pages of quotes and I had
1:11
Speaker 1: to go through and pick and choose. And so I
1:15
Speaker 1: will tell you, please go read this book. I personally
1:19
Speaker 1: wish I had read it way earlier. I've been talking
1:21
Speaker 1: about it for a while. It is called Care Work, Dreaming,
1:26
Speaker 1: Disability Justice by Leah Lakshmi, Peeps Nut Samarasina, and it's
1:31
Speaker 1: from twenty eighteen and yeah, I just wish I had
1:35
Speaker 1: read it earlier, especially before. As I've said, I wrote
1:39
Speaker 1: about disability in the book that we have coming out,
1:43
Speaker 1: but it was so informative. It is a collection of
1:46
Speaker 1: personal essays about disability justice, especially through the lens of
1:50
Speaker 1: sick and disabled, queer, trans, black and brown people, and
1:54
Speaker 1: it also includes quotes and segments written by others in
1:57
Speaker 1: the community, and it has advice and tips, and it's
2:01
Speaker 1: really open. It's got a lot of vulnerable stories about
2:04
Speaker 1: the realities and possibilities of disability justice. So oh, as
2:09
Speaker 1: with a lot of these episodes where Samantha and I
2:11
Speaker 1: can't really speak to the experience, this is a very
2:14
Speaker 1: it is a very cool episode, right.
2:17
Speaker 2: I think before we were recording, I was like, look,
2:20
Speaker 2: there's so much that they say that trying to act
2:25
Speaker 2: like we have some commonality to it, not that we don't,
2:29
Speaker 2: because there's definitely a lot to it. We were talking
2:30
Speaker 2: about when we talk about sexual abuse and they talk
2:34
Speaker 2: about PTSD and they talk about trauma and itself, all
2:38
Speaker 2: that is familiar, and especially when it tends to like
2:40
Speaker 2: anxiety and depression. Because I was like, oh, they kind
2:43
Speaker 2: of hit some nails on the head that I did
2:44
Speaker 2: not recognize. Once again, we talked about this earlier in
2:47
Speaker 2: a Monday Mini when we were talking about I did
2:49
Speaker 2: not really think about disabilities as my anxiety. But what
2:53
Speaker 2: the fact of the matter is it actually holds me
2:54
Speaker 2: back from doing things. I was like, oh, yeah, that
2:57
Speaker 2: makes that actually makes sense then, And I just don't
3:00
Speaker 2: see it as a disability because it's an invisible disability
3:04
Speaker 2: a B. It doesn't feel like it's severe as other
3:07
Speaker 2: types of disabilities, even though that is also ablest in
3:11
Speaker 2: its own mindset. But yeah, in this with their experience
3:14
Speaker 2: as well as who they talk to and who they
3:16
Speaker 2: are referencing, they say it best and so why do
3:19
Speaker 2: we need to replace it?
3:21
Speaker 1: Yes, but that being said, please support them and check
3:24
Speaker 1: out their work and through everything I've seen read they
3:30
Speaker 1: do go by them pronouns. But as always, if that's incorrect,
3:35
Speaker 1: let us know. But let's start because disability justice is
3:40
Speaker 1: at the heart of this book, so let's break down
3:42
Speaker 1: that term. Quote. Disability justice is a term coined by
3:46
Speaker 1: the black, brown, queer, and trans members of the original
3:49
Speaker 1: Disability Justice Collective, founded in two thousand and five by
3:52
Speaker 1: Patty Byrne, Mia Mungus Stacy Milburn, Lee, Roy Moore, Eli Clare,
3:58
Speaker 1: and Sebastian Margaret, disabled queer and trans, black Asian and
4:02
Speaker 1: white activists and artists. They dreamed up of movement building
4:05
Speaker 1: framework that would center the lives, needs, and organizing strategies
4:09
Speaker 1: of disabled, queer and trans, and or black and brown
4:13
Speaker 1: people marginalize from mainstream disability rights organizing's white dominated single
4:18
Speaker 1: issue focus and another quote in the words of Sins
4:24
Speaker 1: Invalid co founder and executive director Patty Byrne, While a
4:29
Speaker 1: concrete and radical move forward toward justice for disabled people,
4:33
Speaker 1: the disability rights movement simultaneously invisibilized the lives of people
4:38
Speaker 1: who lived at intersecting junctures of oppression, disabled people of color,
4:43
Speaker 1: immigrants with disabilities, queers with disabilities, trans and gender non
4:47
Speaker 1: conforming people with disabilities, people with disabilities who are houseless,
4:51
Speaker 1: people with disabilities who are incarcerated, people with disabilities who
4:55
Speaker 1: have had their ancestral lands stolen, amongst others. Disability justice activist,
5:01
Speaker 1: organizers and cultural workers understand that able bodied supremacy has
5:06
Speaker 1: been formed in relation to other systems of domination and exploitation.
5:10
Speaker 1: The histories of white supremacy and ableism are inextricably entwined,
5:14
Speaker 1: both forged in the crucible of colonial conquest and capitalist domination.
5:20
Speaker 1: One cannot look at the history of US slavery, the
5:23
Speaker 1: stealing of Indigenous lands, and US imperialism without seeing the
5:27
Speaker 1: way that white supremacy leverages ablism to create a subjugated
5:31
Speaker 1: other that is deemed less worthy slash abled, slash smart,
5:35
Speaker 1: slash capable. We cannot comprehend ablism without grasping its interrelations
5:40
Speaker 1: with heteropatriarchy, white supremacy, colonialism, and capitalism. Each system benefits
5:47
Speaker 1: from extracting profits and status from the subjugated other. Five
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Speaker 1: hundred plus years of violence against black and brown communities
5:54
Speaker 1: includes five hundred plus years of bodies and minds deemed
5:58
Speaker 1: dangerous by being non normative. A disability justice framework understands
6:03
Speaker 1: that all bodies are unique and essential, that all bodies
6:07
Speaker 1: have strengths and needs that must be met. We know
6:11
Speaker 1: that we are powerful not despite the complexities of our bodies,
6:14
Speaker 1: but because of them. Disability justice holds a vision born
6:17
Speaker 1: out of collective struggle, drawing upon the legacies of cultural
6:20
Speaker 1: and spiritual resistance within a thousand underground pass igniting small,
6:25
Speaker 1: persistent fires of rebellion. In everyday life, disabled people of
6:28
Speaker 1: the global majority black and brown people share common ground
6:32
Speaker 1: confronting and subverting colonial powers in our struggle for life
6:35
Speaker 1: and justice. There has always been resistance to all forms
6:39
Speaker 1: of oppression, as we know through our bones that there
6:41
Speaker 1: have simultaneously been disabled people visioning a world where we
6:45
Speaker 1: flourish that values and celebrates us in all our myriad beauty. Yeah. Again,
6:52
Speaker 1: we can't say it better than that, right.
6:55
Speaker 2: And I think there's so much depth and history within
6:58
Speaker 2: that conversation. Yeah, when we've talked about colonialization and past
7:03
Speaker 2: ugly histories and what that looks like when we take
7:05
Speaker 2: it intersectionally, and then they are definitely diving into that conversation.
7:10
Speaker 2: Here's more of a quote more than that. Disability Justice
7:13
Speaker 2: asserts that ableism helps make racism, Christian supremacy, sexism, and
7:18
Speaker 2: queer and transphobia possible, and that all those systems of
7:21
Speaker 2: oppression are locked up tight. So there's that concluding conversation
7:25
Speaker 2: about the intersectional bit of types of discrimination and what
7:32
Speaker 2: it can lead to in this power play, and then
7:34
Speaker 2: going on. It is underdocumented private work work often seen
7:38
Speaker 2: as not quote real activism, but it is the realist activism.
7:42
Speaker 2: There is this is how disability justice, art and activism
7:45
Speaker 2: change the world and save lives. In writing this book,
7:49
Speaker 2: I wanted to capture some of this history as it
7:51
Speaker 2: is being made and dreamed.
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Speaker 1: Right, And so yeah, it's kind of The book is
7:58
Speaker 1: kind of laid out in a series of essays around
8:01
Speaker 1: certain topics, all of them revolving around disability justice. There's
8:07
Speaker 1: a section that has the ten Principles of Disability Justice
8:11
Speaker 1: by Patty Byrne, edited by Aurora Levin's Morales and David
8:15
Speaker 1: langstaff on behalf of sins invalid. From my vantage point,
8:19
Speaker 1: with since invalid quote, we incubate both the framework and
8:23
Speaker 1: practice of disability justice. This burgeoning framework has ten principles,
8:28
Speaker 1: each offering new opportunities for movement builders. And the first
8:31
Speaker 1: one is intersectionality. Then leadership of those most impacted, anti
8:37
Speaker 1: capitalist politic cross movement, solidarity, recognizing wholeness, sustainability, commitment to
8:43
Speaker 1: cross disability solidarity, interdependence, collective access, collective liberation.
8:49
Speaker 2: Right. I think that's really important that they really really
8:51
Speaker 2: hone in on is collective or community and what that
8:55
Speaker 2: looks like as well as not necessarily bargaining but understanding
9:02
Speaker 2: that there is a.
9:03
Speaker 1: Trade, like there's a yeah, there's a balance.
9:06
Speaker 2: There's a balance, and that there's a good faith and
9:08
Speaker 2: being able to be a community and being a collective.
9:12
Speaker 1: Yes, and again we can't quote the whole book for
9:16
Speaker 1: many reasons. Go please go to support.
9:18
Speaker 3: Do you need to buy the book?
9:20
Speaker 1: Yeah, that's one of the big ones. But also there
9:26
Speaker 1: are just so many beautiful examples of how this could look.
9:29
Speaker 1: When that's like dreaming disability justice, what could look like,
9:32
Speaker 1: there's so many in there of how that could work,
9:36
Speaker 1: how it could look and if you're still kind of like,
9:38
Speaker 1: what does that mean exactly? One of the big parts
9:40
Speaker 1: of it is something called care webs So here's a quote.
9:44
Speaker 1: What does it mean to shift our ideas of access
9:47
Speaker 1: and care, whether it's disability, childcare, economic access, are many
9:50
Speaker 1: more from an individual chore an unfortunate cost of having
9:55
Speaker 1: an unfortunate body, to collective responsibility that's maybe even deeper, joyful.
10:01
Speaker 1: What does it mean for our movements, our communities, our
10:04
Speaker 1: fan ourselves and our own lived experience of disability and
10:08
Speaker 1: chronic illness? What does it mean to wrestle with these
10:11
Speaker 1: ideas of softness and strength, vulnerability, pride asking for help,
10:16
Speaker 1: and not all of which are so deeply raced and
10:19
Speaker 1: classed and gendered. If collective access is revolutionary love without charity,
10:25
Speaker 1: how do we learn to love each other? How do
10:28
Speaker 1: we learn to do this love work of collective care
10:30
Speaker 1: that lives as instead of abandons us, that grapples with
10:33
Speaker 1: all the deep ways in which care is complicated. And
10:38
Speaker 1: then the quote was I wrote this because I believe
10:41
Speaker 1: we stand at the crossroads between both the gifts and
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Speaker 1: the unexpected, inevitable collapses of our work, and we have
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Speaker 1: the opportunity to dream and keep dreaming ways to build emergent,
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Speaker 1: resilient care webs. I believe that our work in creating
10:55
Speaker 1: the new world depends on it because all of us
10:58
Speaker 1: became disabled and sick, because all of us will become
11:02
Speaker 1: disabled and sick because state systems are failing. That community
11:06
Speaker 1: is not a magic unicorn, a one stop shop that
11:09
Speaker 1: always helps us do the laundry and be held in need.
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Speaker 1: I believe that the only way we will do this
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Speaker 1: is by being real, by not papering over the places
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Speaker 1: where a rhetoric falls flat, where we ran out of steam,
11:23
Speaker 1: or where this is genuinely hard yep so much. Yes,
11:29
Speaker 1: And that's one of the I would say truly open
11:35
Speaker 1: and vulnerable parts of this book is that is very
11:39
Speaker 1: honest in where things do fall flat, like where it
11:47
Speaker 1: it's just a really complicated, complex thing, and changing that
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Speaker 1: mindset of it from it's a chore to it being
11:56
Speaker 1: a deeply joyous thing, but also just that whole asking
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Speaker 1: for help and asking not asking for help and navigating
12:03
Speaker 1: all of that.
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Speaker 2: And then like I know they talk about it soon,
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Speaker 2: but they talk about the fact that for those who
12:09
Speaker 2: are at this time able bodied being requested to help us,
12:15
Speaker 2: being understanding to the fact that this is not because
12:20
Speaker 2: they want to. And the matter of the fact is
12:24
Speaker 2: that those who are saying that they are for disability justice,
12:29
Speaker 2: meaning they accept all of it, whether it's an anger
12:32
Speaker 2: and frustration and or all of that, being open to
12:34
Speaker 2: all the emotions that come with it and stop being
12:37
Speaker 2: the kind of like the savior hat which people take upon,
12:41
Speaker 2: which is again able list.
12:43
Speaker 1: Yes, and I cut it out again because I had
12:46
Speaker 1: so many lots in here. But there was also a
12:51
Speaker 1: whole section on what was called like for people who
12:54
Speaker 1: are able bodied and had a temporary Uh, we're not
12:58
Speaker 1: always temporary, but are now like not able bodied and
13:01
Speaker 1: you know, putting up the Facebook post and getting all
13:03
Speaker 1: that support and then that fading away pretty quickly, if
13:07
Speaker 1: it doesn't go away very quickly, and people with disabilities
13:11
Speaker 1: seeing that and being like, well, here I am, I've
13:14
Speaker 1: been doing that. You haven't shown up for me at all.
13:18
Speaker 1: But yeah, that was a big topic of asking for
13:21
Speaker 1: help receiving care. Here's a quote as Ronham of r
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Speaker 1: Amp Vancouver writes, If interdependency is in our DNA, what
13:40
Speaker 1: does it mean when we fall out of whack with it?
13:43
Speaker 1: How do we handle the realities of our bodies and
13:45
Speaker 1: minds that need what they need when they need it.
13:48
Speaker 1: What does it mean when I can't support you in
13:50
Speaker 1: the ways you're supporting me? Does interdependency mean we do
13:55
Speaker 1: the same for one another at all times? So there's
13:58
Speaker 1: even such a thing as the same when it comes
14:01
Speaker 1: to this stuff? Is it a gentle ebb and flow?
14:05
Speaker 1: What if my ebb will never match your flow? What
14:08
Speaker 1: if it's sometimes a torrential downpour and one of us
14:11
Speaker 1: is drowning? What do we do? Then there were more
14:15
Speaker 1: questions like what happened when some of us could hang
14:17
Speaker 1: out together more because we had fewer mobility needs. We
14:21
Speaker 1: could make it into a car, could deal with exposures,
14:24
Speaker 1: and some of us couldn't. How did we make things
14:26
Speaker 1: feel fair when some of us got tired and sick
14:29
Speaker 1: and needed to cancel and others, maybe folks who practiced
14:33
Speaker 1: sucking it up and working through pain more, maybe just
14:36
Speaker 1: folks who didn't have pain and fatigue, were left feeling
14:39
Speaker 1: like they were doing all the work. What about those
14:42
Speaker 1: of us who felt more comfortable going to non disabled
14:45
Speaker 1: events together so got to spend that time and get
14:49
Speaker 1: that visibility, and those of us who were more overwhelmed
14:52
Speaker 1: or had more anxiety about being stared at. And maybe
14:56
Speaker 1: the biggest disabled community question of all, what happens when
14:59
Speaker 1: a lo a lot of people who have always been
15:01
Speaker 1: the only one are no longer the only disabled queer
15:05
Speaker 1: of color in the room. How does that affect how
15:08
Speaker 1: we work together, build community and work out conflict. Sometimes,
15:13
Speaker 1: because we were used to being the only revolutionary equip
15:15
Speaker 1: fighting ableism in a sea of able bodied obliviousness, it
15:19
Speaker 1: was hard for us to hear that we weren't always right,
15:22
Speaker 1: to understand differences of opinion or approach or experience as
15:26
Speaker 1: other than wrong or attack or threat. After a year,
15:30
Speaker 1: our group broke up and they were describing specific group
15:35
Speaker 1: they set up from all of these pressures and hard
15:38
Speaker 1: spots and a web of interpersonal conflict. It was a
15:41
Speaker 1: hard breakup. I felt like my dreams Sick and Disabled
15:44
Speaker 1: qt BIPOP Crew had fallen apart, that a community I
15:48
Speaker 1: had passionately believed in and given much of my limited
15:51
Speaker 1: energy to had failed. I didn't know that one group
15:55
Speaker 1: falling apart didn't have to mean that was it for
15:58
Speaker 1: the idea of building a care web for the movement.
16:01
Speaker 1: I wish we could have known that the struggles we
16:03
Speaker 1: hit weren't failures or signs of how inadequate we were,
16:06
Speaker 1: but incredibly valuable learnings. And yeah that's true. You know,
16:12
Speaker 1: yeah it doesn't always work out, but you've learned from it,
16:15
Speaker 1: and then you build off of that, right.
16:18
Speaker 2: And they don't stop. No, it's the other key another quote. Yet,
16:22
Speaker 2: as I move forward in this life of creating and
16:25
Speaker 2: receiving care, I'm continually impressed by how we find ways
16:29
Speaker 2: to keep each other alive when the state is and
16:32
Speaker 2: the community can be and inadequate too. I love seeing
16:36
Speaker 2: how friends and strangers seem to be more and more
16:38
Speaker 2: used to crowdfunding care and setting up care shift google docs.
16:41
Speaker 2: I also see the burnout and exploitation of often film
16:45
Speaker 2: and disabled labor that happens, and also what happens when
16:48
Speaker 2: people plane run out of energy, money, and time. I
16:52
Speaker 2: think about the needs I have that I am still
16:54
Speaker 2: too ashamed to let anyone see, let alone take care of.
16:57
Speaker 2: I also think about friends and strangers who plenty of needs,
17:01
Speaker 2: but not enough friends or strangers willing and able to
17:04
Speaker 2: come through to care for them. The community is not
17:07
Speaker 2: a magic utopia, just like our families weren't, and we
17:10
Speaker 2: don't all just magically love each other or even like
17:13
Speaker 2: each other, let alone agree on every political issue.
17:16
Speaker 1: Yes, that was the point that came up a lot
17:18
Speaker 1: and known in the book, Because you know, even if
17:21
Speaker 1: nobody likes you, even in a lot of times, that's
17:24
Speaker 1: because you're in pain and you're not feeling right, very
17:27
Speaker 1: personal or s shiable, that doesn't mean you should not
17:31
Speaker 1: get care that you need.
17:32
Speaker 2: Right.
17:34
Speaker 1: Yes, here's another quote. Are the poor and working class
17:39
Speaker 1: disabled fems doing all the work all the time? Care
17:42
Speaker 1: is feminized and invisibilized labor. Care is something that many,
17:46
Speaker 1: not all poor slash working class folks do like breathing.
17:51
Speaker 1: We got time. It's just the right thing to do. Right.
17:54
Speaker 1: What's going on with race and entitlement? Who feels comfy? Asking?
17:58
Speaker 1: Are the white queers, the pretty queer, the middle class,
18:00
Speaker 1: relatively happy, skinny normal queers getting much care? How many
18:05
Speaker 1: masculine gendered people have I cared the software with no reciprocity.
18:10
Speaker 1: Talk about this stuff. It's really important disrupted get the
18:14
Speaker 1: mask pretty abled people to put in time. And here
18:20
Speaker 1: is another quote. This is an excellent example of where
18:24
Speaker 1: disability rights bumps against disability justice. A rights framework says
18:28
Speaker 1: that the ADA and other pieces of civil rights legislation
18:31
Speaker 1: give disabled citizens our rights. We simply state the law
18:36
Speaker 1: and get our needs met. Disability justice says, what if
18:40
Speaker 1: you're disabled and undocumented? What if you think the settler
18:43
Speaker 1: colonial nation we live in is a farce and a hallucination.
18:47
Speaker 1: What if you don't have money to sue an inaccessible business.
18:50
Speaker 1: What if the people giving you accommodations and access technology
18:53
Speaker 1: or not are not paid for by the state but
18:56
Speaker 1: part of your community. I agree that our acts us
19:00
Speaker 1: to access and the world should not be predicated on
19:03
Speaker 1: desirability or popularity or approval of the able bodied masses
19:07
Speaker 1: or anyone. And I hold a deep place of respect
19:10
Speaker 1: for the way so many of us have been denied
19:12
Speaker 1: access to love. But when I say the word love,
19:15
Speaker 1: I mean something more crypt out and weird than the
19:18
Speaker 1: traditional desirability politics many of us are forced to try
19:21
Speaker 1: to survive and live within. I mean that when we
19:24
Speaker 1: reach for each other and make the most access possible,
19:27
Speaker 1: it is a radical act of love.
19:31
Speaker 2: I guess that underlying like actually seeing beyond your normative
19:36
Speaker 2: ablest ideals, because they definitely talked a lot about different
19:40
Speaker 2: things that I haven't even considered when it comes to
19:43
Speaker 2: activism in itself, and how it's so exclusionary just walking
19:47
Speaker 2: in a pace, being allowed to be late, like we
19:50
Speaker 2: have such an unfortunate level of hierarchy, and especially when
19:57
Speaker 2: it comes to success and being successful about like time
20:00
Speaker 2: and such that it's really able us. And I've never
20:03
Speaker 2: really thought about that, And I'm like, huh, that is
20:06
Speaker 2: a whole conversation that we don't talk about. And then
20:09
Speaker 2: there's another quote there is there's grief mixed in with
20:13
Speaker 2: the rage and survival and a belief that you must
20:16
Speaker 2: be spoiled or entitled to ask for what you need.
20:20
Speaker 2: It reminds me of survivors who stubbornly insist that their
20:23
Speaker 2: parents beat them and they came out just fine. I
20:27
Speaker 2: honored the survival skills of denying need and getting the
20:30
Speaker 2: fire have been things that kept us alive. But I
20:33
Speaker 2: believe our beloved dead want us to do more than
20:37
Speaker 2: life on one cracker and an inaccessible building forever. And yeah,
20:42
Speaker 2: this whole level of well, you need to just deal
20:45
Speaker 2: with it is it is. It's so infuriating for all things,
20:50
Speaker 2: all the things in this whole level of like, well
20:53
Speaker 2: I got by, why can't you? And then the like
20:55
Speaker 2: We see that prime example as when it comes to
20:58
Speaker 2: race and when it comes to feminism and women's issues,
21:02
Speaker 2: But the conversation is truly like, but why should they
21:05
Speaker 2: have to? Everybody has been advanced and we all can
21:09
Speaker 2: take that time to care and then not want them
21:13
Speaker 2: just to survive, but to truly live and to be
21:19
Speaker 2: able to do more than just live on crackers, as
21:23
Speaker 2: they say.
21:25
Speaker 1: Right, And I think that goes back to what you
21:27
Speaker 1: said earlier about the why this is so important for
21:29
Speaker 1: intersectionality is as we talked about in our recent disability
21:34
Speaker 1: Pride check in I had a lot of this internalizableism
21:37
Speaker 1: around like, oh I'm so strong, Look how much pain
21:40
Speaker 1: I can put up with before I do something. And
21:42
Speaker 1: that's just such a toxic, a toxic mindset of why
21:48
Speaker 1: if I don't need to be like, who's profiting off
21:50
Speaker 1: of this?
21:51
Speaker 2: Not me?
21:52
Speaker 1: Like not me? And there is a lot of discussion
21:56
Speaker 1: around that in this book too, of the things I've
21:58
Speaker 1: been wrestling with around capitalism and diableism. And I want
22:04
Speaker 1: to put this in because there is some history about
22:07
Speaker 1: kind of in North America when colonialism came in and
22:14
Speaker 1: how it changed for the indigenous people. So quote. Disabled
22:21
Speaker 1: Cherokee scholar Quo Le Driscol has remarked that in pre
22:26
Speaker 1: contact Cherokee, there are many words for people with different
22:30
Speaker 1: kinds of bodies, illnesses, and what would be seen as impairments.
22:34
Speaker 1: None of those words are negative or view those sick
22:36
Speaker 1: or disabled people as defective or not as good as
22:39
Speaker 1: normatively bodied people. With the arrival of white settler colonialism,
22:45
Speaker 1: things changed, and not in a good way for many
22:48
Speaker 1: sick and disabled, black, Indigenous and brown people. Under the
22:51
Speaker 1: Transatlantic enclavement, colonial invasion, and forced labor, there was no
22:55
Speaker 1: such thing as state funded care instead. If we were
22:58
Speaker 1: too sick or disabled to work, we were often killed, sold,
23:03
Speaker 1: or left to die because we were not making factory
23:05
Speaker 1: or plantation owners money. Sick, disabled, mad, deaf, and neurodivergent
23:11
Speaker 1: people's care and treatment varied according to race, class, gender,
23:15
Speaker 1: and location. For the most part, at best, we were
23:18
Speaker 1: able to evade capture and find ways of caring for
23:21
Speaker 1: ourselves are being cared for by our families, nations, or communities,
23:25
Speaker 1: from our black and brown communities to disabled communities. At worst,
23:29
Speaker 1: a combination of legal and societal ableism plus racism and
23:33
Speaker 1: colonialism meant that we were locked up in institutions or
23:36
Speaker 1: hospitals for our own good. The ugly laws on the
23:40
Speaker 1: books in the United States from the mid seventeen hundreds
23:42
Speaker 1: to the nineteen seventies stated that many disabled people were
23:46
Speaker 1: too ugly to be in public and legally prevented disabled
23:49
Speaker 1: people from being able to take up space in public. Yeah,
23:55
Speaker 1: and another part of this conversation, a big part of
23:58
Speaker 1: this book is something called healing justice. Here's a quote.
24:03
Speaker 1: I've been involved in what's known as the Healing Justice
24:05
Speaker 1: movement since twenty ten and have been involved and invested
24:09
Speaker 1: in healing as a form of liberation and social justice
24:12
Speaker 1: all my life, from when I was a little survivor
24:14
Speaker 1: brown femme disabled kid to when I was a nineteen
24:17
Speaker 1: year old feeling ashamed of her alter and interest in
24:19
Speaker 1: herbs and taro because they were a departure from the
24:24
Speaker 1: real struggle. The Healing Justice movement was created in response
24:28
Speaker 1: to all of those things, from burnout to ablest movement
24:30
Speaker 1: cultures that detegrate and dismiss healing as not serious, to
24:34
Speaker 1: a lack of access to high quality healing and health
24:37
Speaker 1: care by oppressed people, and in the hope of reclaiming
24:40
Speaker 1: the ways are oppressed surviving communities have always healed, from
24:44
Speaker 1: before colonization to now.
24:46
Speaker 2: And going on. Most sick and disabled people I know
24:49
Speaker 2: approach healing wanting specific things less pain, less anxiety, more flexibility,
24:55
Speaker 2: but not usually to become able bodied. And many of
24:58
Speaker 2: us don't feel automatically comfortable going to healing spaces at
25:01
Speaker 2: all because of our histories of being seen as freaks, scrutinized, infantilized,
25:06
Speaker 2: patronized with what happened, prayed over and asked, have you
25:09
Speaker 2: tried acupuncture? And a million other quote miracle cures able
25:14
Speaker 2: bodied practitioners without an anti ablest analysis, including wiki providers
25:19
Speaker 2: and anti impression therapists, often see us as objects of disgust, fascination,
25:24
Speaker 2: and or inspiration porn. Mostly, these practitioners dismissed our lived
25:29
Speaker 2: expertise about our body minds and their needs, or on
25:33
Speaker 2: the flip side, they tell us we're quote not really
25:36
Speaker 2: disabled when we insist on the realities.
25:38
Speaker 1: Of our lives. Yeah, there's a lot of that in there,
25:43
Speaker 1: of like no, you're fine, Like no.
25:46
Speaker 2: So I'm guessing films like Doctor Strange is the ultimate
25:49
Speaker 2: to this context of ablest.
25:52
Speaker 1: Yeah, definitely not a good No, not good, And yeah,
25:59
Speaker 1: that was a big speaking of that was also a
26:02
Speaker 1: big thing with this was white people jumping in, trying
26:04
Speaker 1: to dominate the space, trying to make money. So that's
26:06
Speaker 1: like a clear always research, always research, right.
26:12
Speaker 2: We were going to do a whole episode on white
26:13
Speaker 2: women and yoga, but we had so many other subjects.
26:16
Speaker 2: But this kind of comes into the play of like
26:19
Speaker 2: what has it become?
26:21
Speaker 1: Right, and that's you know, we also talked about it
26:24
Speaker 1: with veganism, where there's kind of this white vegan movement
26:29
Speaker 1: of like we've discovered it, Like no, you did it.
26:31
Speaker 1: So it's just sort of like you can participate. You
26:35
Speaker 1: you could be vegan, you can participate in this, but
26:38
Speaker 1: there's about respect and knowing the history and not taking
26:40
Speaker 1: up the space, the room, getting the money and forcing
26:43
Speaker 1: people out who actually have that history. Also, yes, there
26:48
Speaker 1: was a lot of talk about sexuality and desirability, which
26:52
Speaker 1: we've discussed a lot when it comes to disability and
26:55
Speaker 1: how that's often erased, including some specifics that have had
27:01
Speaker 1: more positive portrayals of disabled sexuality and how important that is.
27:06
Speaker 1: And then going back to what you were saying, Samantha,
27:09
Speaker 1: which is something we wrote about in the book. But
27:12
Speaker 1: there is a big conversation about the accessibility of movements,
27:15
Speaker 1: of activism, of advocacy. So here's a quote that I
27:22
Speaker 1: remain with many other fem and feminine people harmed by misogyny,
27:26
Speaker 1: where endless free care, work and emotional labor is simply
27:29
Speaker 1: the role my community in the world has for us.
27:32
Speaker 1: We are supposed to wipe the ass of the world
27:34
Speaker 1: without ceasing. As a newly physically disabled, working class fem
27:38
Speaker 1: of color in the nineteen nineties, I often felt how
27:40
Speaker 1: the queer and radical prison justice communities I was part
27:43
Speaker 1: of looked down upon my gender, especially when I was
27:46
Speaker 1: disabled and broke and surviving abuse and needing support. Then
27:50
Speaker 1: I really sucked. I was just another needy, weak girl. Hum.
27:55
Speaker 1: The one place fem people could receive respect in those
27:57
Speaker 1: communities was if we were tough and vulnerable, always on
28:01
Speaker 1: and never needing a thing. I know I'm not alone,
28:05
Speaker 1: and I know this experience has not ended.
28:08
Speaker 2: I find that interesting that being tough and which is
28:10
Speaker 2: again kind of that whole. We've talked about it in
28:12
Speaker 2: so many episodes, whether it's a mom episode, whether it's
28:17
Speaker 2: about pain or being a survivor of trauma, like this
28:21
Speaker 2: needs to be tough and in being able to show
28:24
Speaker 2: that you can handle it as if that's a merit.
28:28
Speaker 2: And what's going on. What I want to tease out
28:30
Speaker 2: and focus on are the ways that misogyny, fem phobia,
28:34
Speaker 2: and trans misogyny come together to royally screw over fem
28:37
Speaker 2: people of many genders. How misogyny, femphobia, and trans misogyny
28:42
Speaker 2: are part of the global systems of gender that extract
28:44
Speaker 2: the hell of a lot of labor and energy from
28:48
Speaker 2: film and feminized people from parenting and caretaking being considered
28:52
Speaker 2: free labor to sexist assumptions of film from availability being
28:56
Speaker 2: made in queer and trans communities. Also, the gen ned
29:00
Speaker 2: wage gap is real. Cists and trans women really do
29:03
Speaker 2: get paid lessons to men and women and films who
29:05
Speaker 2: are racialized, disabled, in prison, and institutionalized, trans, rural and
29:10
Speaker 2: poor working class get paid extra bad.
29:13
Speaker 3: Yeah, this is.
29:24
Speaker 1: Kind of unrelated, kind of related, but we just did
29:28
Speaker 1: an episode on what's going on with strikes, the actor
29:31
Speaker 1: strike and the writer strike, and I read a lot
29:34
Speaker 1: about kind of women, and in particular black women, being
29:40
Speaker 1: frustrated because they'd had conversations with the men that they're
29:45
Speaker 1: striking with that just dismiss them, and so like they're
29:51
Speaker 1: in the same cause they're doing they want the same
29:54
Speaker 1: things mostly, but having that like and that does happen
29:58
Speaker 1: in activism too, Like that's what we talk about with
30:00
Speaker 1: white feminism. But it's also like, if you're talking about
30:04
Speaker 1: just all of these ways that activism is raised and gendered,
30:10
Speaker 1: in class and all of those those things, it doesn't
30:12
Speaker 1: go away just because you're all working towards this one,
30:18
Speaker 1: you know, general idea. Here's another quote, sick and disabled
30:23
Speaker 1: folks will get up from where we've been projectile vomiting
30:26
Speaker 1: for the past eight hours to drive a spare effectsor
30:29
Speaker 1: to their friend's house who just ran out. We do
30:31
Speaker 1: this because we love each other and because we often
30:33
Speaker 1: have a sacred trust not to forget about each other
30:36
Speaker 1: able body. People who think we are weak have no idea.
30:40
Speaker 1: Every day of our disabled lives is like an ironman triathlon.
30:44
Speaker 1: Disabled sick, poor, working class, sex, working and black and
30:48
Speaker 1: brown fems are some of the toughest and most resilient folks.
30:51
Speaker 1: I know you have to develop complex strengths to survive
30:55
Speaker 1: this world as us. I love how working class, fim
30:58
Speaker 1: and disabled this care labor is. I just wanted to
31:01
Speaker 1: also not be seen as an automatic expectation of any
31:04
Speaker 1: film at any time. I want some rules so we
31:07
Speaker 1: don't feel drained, exhausted and over. I want it to
31:10
Speaker 1: be a choice, and I want its next level genius
31:14
Speaker 1: of skill to be recognized. This is skilled labor.
31:17
Speaker 2: I think that's such an important conversation because, yeah, with
31:21
Speaker 2: Keia Brown last year, when we were having these conversations
31:23
Speaker 2: about being a black woman, a black disabled woman in
31:26
Speaker 2: these spaces, and then having that conversation of having to
31:30
Speaker 2: be strong because of their race, like having to pretend
31:34
Speaker 2: like that that is something that's so easy and so
31:38
Speaker 2: like you're used to it, so keep doing that and
31:40
Speaker 2: you're incredible and you should always do that, and it's
31:43
Speaker 2: like no, but it's tiring, right, And that's that same
31:45
Speaker 2: level of everything. Like when we talk about again with
31:49
Speaker 2: all the missagen Noir leaning on black women for leadership,
31:53
Speaker 2: they're like, no, we want you to do it for yourself.
31:55
Speaker 2: We're doing it because we have to, not because we
31:57
Speaker 2: want to. This is not about something that we are
32:00
Speaker 2: so proud to do and we wanted to take up.
32:02
Speaker 2: Is because everybody else was failing and they started like
32:06
Speaker 2: they left the world to us, and that's where we are.
32:09
Speaker 2: And the truth of the matter is they would rather
32:11
Speaker 2: have someone else do it and let them rest for
32:13
Speaker 2: just a damn second.
32:15
Speaker 1: Right, right, And I like the reframing here of toughness
32:21
Speaker 1: is like just surviving when no one else is helping you,
32:25
Speaker 1: rather than other people in your situation. But like the
32:29
Speaker 1: systems aren't helping you, most of society is an't helping you.
32:32
Speaker 1: You're finding this community and you are, but like that
32:34
Speaker 1: idea of the tough thing is just helping other people
32:39
Speaker 1: or getting through your day when no one else, No
32:43
Speaker 1: one else is doing anything to help you, and all
32:48
Speaker 1: of the There's a whole other section I cut out
32:50
Speaker 1: that was about those kind of emotional skills people with
32:56
Speaker 1: disability develop and how they are not given the do
33:01
Speaker 1: that they should be. They are not seen as the
33:03
Speaker 1: skill that they should be, like things like that, and yeah,
33:07
Speaker 1: just kind of dismissing this is, oh, you're gonna do it,
33:10
Speaker 1: so not recognizing that as a skill or as something
33:14
Speaker 1: that should be paid and not expected, or at least
33:18
Speaker 1: like paige should be an option, which the book also
33:21
Speaker 1: goes into as well. Here's another quote, and this is
33:26
Speaker 1: sort of moving into the suicidality part. We're not going
33:29
Speaker 1: to get too much into it, but just heads up,
33:33
Speaker 1: we don't want platitudes or uplift our people telling us
33:35
Speaker 1: were loved. I mean, tell me, but I know I'm loved.
33:38
Speaker 1: Sometimes hearing that helps. Sometimes I am still deeply, deeply sad. Anyway,
33:43
Speaker 1: I don't have the answers, but I am interested in
33:46
Speaker 1: collectively creating them. I am interested in all of us
33:49
Speaker 1: who dance with dying talking about all the different and
33:51
Speaker 1: real things that suicide can mean to us, all the
33:54
Speaker 1: things that allow us to stay here and more than that,
33:57
Speaker 1: I am interested in creating models of how be mostly
34:00
Speaker 1: queer in trans adulthood, where we can be leaders and
34:03
Speaker 1: still be vulnerable, where it can be open that it's
34:06
Speaker 1: not happily ever after. Life models that encompass falling apart
34:09
Speaker 1: and reforming not as a failure but as a life pathway.
34:14
Speaker 2: And here's another one. The summer after that, Jericho Bolan,
34:17
Speaker 2: a fourteen year old black queer disabled to find person
34:20
Speaker 2: with spinal muscular atrophy to announced her planned suicide, saying
34:25
Speaker 2: I'm going to be free. Bolan gained mainstream media attention
34:29
Speaker 2: for her requested death when she started on Indigogo to
34:32
Speaker 2: raise money for Jerica's last dance prom in the month
34:36
Speaker 2: before she would go into the hospice and ask them
34:38
Speaker 2: to shut off her ventilator. Actions of the media named
34:41
Speaker 2: as brave and inspirational. She said that she didn't have
34:45
Speaker 2: a feature that she of course wouldn't be able to
34:47
Speaker 2: dance or date or love, so she was choosing to die,
34:51
Speaker 2: and her announcement of her planned public suicide was cheered
34:54
Speaker 2: on by her white adoptive family and mostly white rural
34:58
Speaker 2: farming community of Appleton, Wisconsin.
35:01
Speaker 1: Yeah that goes to show how harmful that narrative is
35:05
Speaker 1: of like you can't there's no future, you can't be happy,
35:09
Speaker 1: there's like no possibility. And I do love how open
35:18
Speaker 1: the author was about their own struggles with suicidality, because
35:22
Speaker 1: I think that's true. I don't think we talk about
35:24
Speaker 1: that enough, Like you cannot have a reason, you could
35:26
Speaker 1: not have a specific thing, you could be generally happy,
35:30
Speaker 1: and that feeling comes anyway, and I don't I agree,
35:35
Speaker 1: we don't talk about that enough.
35:37
Speaker 2: Right, And I think something that they also point out,
35:40
Speaker 2: because this whole kind of narrative is this idea of
35:43
Speaker 2: curing something, and they talk about that a lot, like
35:47
Speaker 2: we're not asking you to cure us. That is not
35:51
Speaker 2: a thing. That is not what we're looking in. And
35:53
Speaker 2: I know we'd mentioned it earlier when we say they
35:55
Speaker 2: want a relief of pain, they want the relief of anxiety,
35:59
Speaker 2: not to be cured. And I think it kind of
36:02
Speaker 2: comes into that same conversation about what does cure look
36:05
Speaker 2: like and what does it mean when you're a friend
36:09
Speaker 2: of yours who die by suicide, Like what does that mean?
36:14
Speaker 2: And is that a celebration? Is that mournful? Like there's
36:16
Speaker 2: so many conversations to that, because it's not strange and
36:20
Speaker 2: even as a person who is able to body and
36:22
Speaker 2: I say that as able by a person but that
36:24
Speaker 2: has also mental health needs, like I have definitely had
36:27
Speaker 2: thoughts of suicide many at times. And that's that reality,
36:31
Speaker 2: is that it's not just two people of physical disabilities,
36:36
Speaker 2: and that's a reminder of that. It's like also one
36:40
Speaker 2: and being said and one being a celebration. That's really
36:43
Speaker 2: ablest and really really disheartening.
36:47
Speaker 1: It is very, very disheartening. And I wanted to include
36:55
Speaker 1: this final quote, even though once again I could have.
37:01
Speaker 1: It was fifteen pages originally, but fems, I love you
37:07
Speaker 1: when your handshake too much from meds or stress or
37:09
Speaker 1: disability to put on eyeliner, let alone put it on perfectly.
37:13
Speaker 1: I love you when you don't wear eyeliner. I love
37:15
Speaker 1: you when you are deeply sad, raging in despair, not pretty,
37:19
Speaker 1: in the same sweats for three days or a month,
37:21
Speaker 1: when you smell like sweat and fear and the deep sad.
37:25
Speaker 1: I love you when you cough up phlegm. I love
37:28
Speaker 1: you when you scream and rage and ache. I love
37:31
Speaker 1: you when you don't wear those five inch heels because
37:33
Speaker 1: your feet hurt, or it's a sexier choice as a
37:36
Speaker 1: disabled fem to wear kicks like the gold glitter ones
37:38
Speaker 1: I'm wearing right now. And I want a community where
37:41
Speaker 1: we can be messy and pain hurting, imperfect, and we
37:44
Speaker 1: really know that our genders are still seen and cherished.
37:48
Speaker 1: I just love that. I love I think that's also
37:52
Speaker 1: going back to what you said, is this idea of
37:56
Speaker 1: like community of not looking for the cure, but looking
38:00
Speaker 1: for a world where people with disability can be supported
38:06
Speaker 1: and not have to fight so hard to get to
38:10
Speaker 1: get that support, to get basic needs, where it's not
38:12
Speaker 1: depended on where your friends can be there for you,
38:15
Speaker 1: but also you can have something else if they can't
38:18
Speaker 1: be there for you right that time.
38:22
Speaker 2: Right, Yeah, there's so many things that they write down.
38:25
Speaker 2: They even talk about being able to meet people where
38:30
Speaker 2: they're at. They talk about the movements in California where
38:33
Speaker 2: they thought it was gonna be a mecca and a home,
38:35
Speaker 2: but then there are so many stipulations and hierarchies even there.
38:40
Speaker 2: They open up about people who want to be Oh,
38:43
Speaker 2: the whole conversation about what disability justice it was like
38:47
Speaker 2: that that was an incredible conversation because oftentimes people who
38:50
Speaker 2: are on the outside with like good intentions fall so
38:54
Speaker 2: hard and then get frustrated at those that they're trying
38:58
Speaker 2: to help that you're like, what was the point then,
39:00
Speaker 2: what what are you really doing? Because they don't look
39:03
Speaker 2: at it. Again, We've talked about this before, We've been
39:05
Speaker 2: talking about it a lot recently, because they're not at
39:07
Speaker 2: the table. They're not there to have their opinions talked
39:11
Speaker 2: about or even a part of the conversation. So therefore
39:14
Speaker 2: there's no understanding of those things things that we don't
39:18
Speaker 2: think about and take for granted, but they immediately take,
39:21
Speaker 2: like immediately think on it, whether it's access through having
39:27
Speaker 2: to sit down, or having to have medications being done,
39:30
Speaker 2: having to be able to go into a different area,
39:34
Speaker 2: to be able to calm and have a space out, Like,
39:36
Speaker 2: there's so many things that it's not often thought about.
39:40
Speaker 2: I feel like maybe people are getting better, but they're
39:42
Speaker 2: still not understanding. If you don't include the people who
39:45
Speaker 2: you are trying to fight for, you're never actually doing justice.
39:51
Speaker 1: Right, right, And that goes back to the accessibility of
39:54
Speaker 1: movements like this and why this is so necessary and
39:58
Speaker 1: it really is, like, please read it. I wish I'd
40:01
Speaker 1: read it earlier. And there's so much more that we
40:03
Speaker 1: could talk about with this, and I'm sure we'll come
40:07
Speaker 1: back to it, but in the meantime, if you have
40:11
Speaker 1: any suggestions for books we should read, you can email
40:14
Speaker 1: us at Stuff Media, Momstuff at iHeartMedia dot com. You
40:17
Speaker 1: can find us on Twitter at moms Stuff Podcasts, or
40:19
Speaker 1: on Instagram and TikTok at stuff Whenever Told You. We
40:22
Speaker 1: have a tea public store with merchandise. We also have
40:25
Speaker 1: a book you can pre order at stuff you Should
40:27
Speaker 1: Read books dot com and on Audible. Thanks as always
40:31
Speaker 1: to our super producer Christina, our executive producer Maya, and
40:33
Speaker 1: our contributor Joey. Thank you all so much, Yes, and
40:36
Speaker 1: thanks to you for listening. Steffan Never Told Me is
40:38
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40:41
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