Episode Transcript
Speaker 0 00:00:06 <inaudible> my name is Taylor McGee and I'm Shiloh
Speaker 1 00:01:08 Today on international women's day, we are discussing issues surrounding disability representation. I am a member of the young women's initiative cabinet on initiative created by the women's foundation of Minnesota to create equity amongst women throughout the state of Minnesota, the young women's initiative centers, the leadership of young women of color American Indian women, women from greater Minnesota, LGBTQ youth, and young women with disabilities women's foundations across the country are leading young women's initiatives. However, Minnesota is the only initiative that specifically advocates for equity amongst young women with disabilities from this leadership investment in myself through Y w I M M I have taken the initiative to start my own organization titled the black disability collective the black disability collective is a movement to fight for and uplift black disabled lives through education, entertainment, and visibility today, Shiloh, and I will be discussing different aspects, uh, their presentation of disabled women throughout media and politics and how these issues impact us to begin with some discussion questions. Shiloh, do you see yourself reflected in the media you consume? How are ways you want to change the world to see that?
Speaker 2 00:02:32 I feel that I can see narratives of myself in the media, but none of them really feel like they truly capture all aspects of my identity at once. You know, and as someone who has a lot of categories, you know, checked off and intersectionality that are a little bit odd together, um, that was something I was not like expecting out of life, but I have seen images of myself portrayed in the media that I feel like have definitely damaged my idea of myself. You know, uh, we both watch a lot of similar TV shows and like at this point in time, I'm actually really excited to watch this show again. Um, but like Steven universe is a big part of my life and it has been since it came out and like the characters in that show, um, uh, specifically amethyst is a character where, um, she, her gem came out, you know, way late. And because of that, it stunted her height. And she's very conscious about this. This is something that she thinks about very often and other characters tend to, you know, not think about it. And sometimes that causes conflicts between them, you know, to the point of amethyst being like, how could you not know that this was hurting me? This is my entire existence. You know,
Speaker 3 00:04:02 And for that character, her being disabled and being seen as a woman, of course, the construction of gender in cartoons is complicated in the same way it is in real life. But in this production, she is seen as a woman and she lives with a disability. And for those around her who don't live life, the way that she does, they are frequently confused as to why this is such a big deal to her, like why she is dealing with these narratives of seeing herself as lesser than, or seeing herself as not made like quote. Right. And so I definitely also see myself in that character. And I think that disability coding in cartoons and in different media is very important.
Speaker 2 00:04:42 Yes. And one thing that I really like about the show is that a lot of the characters I feel like are coded to have different neurodivergency seas and disabilities. And a lot of the characters are LGBT coded and, you know, coded to be people of color. And I really appreciate that representation. Um, but sometimes, you know, when you see a narrative of, you know, a character that looks like you and reminds you of yourself constantly being shown, you know, as maybe not being seen, you know, romantically or not being seen as trustworthy or being taken, not as seriously, you know, even when she was being extremely serious and saving the day, sometimes people would make jokes, you know, like, Oh, I'm at this, doesn't do much, you know, and it was something that the show challenge. And I really appreciate that, but at this point in my life, it's still really painful to see that over and over again, and like children's media.
Speaker 3 00:05:41 I agree. And I think it is important to point out that this is supposed to be a children's show. And yet there are these characters who are coded as disabled, who are coded as women coders as women of color and how important that is because this media is being exposed to people who are also like our age range, you know, like twenties, but also for those who are younger than us, and it teaches them about disability. It teaches them about how to interact with those who are different than themselves. And I think because of that, we have to continue to hold our media to higher standards because it's about more than just us. It's about what people are taking in what they're consuming and when we are seeing ourselves, but we aren't always seeing ourselves done in the right way. We see a bigger picture how that impacts us.
Speaker 2 00:06:26 And I almost feel as though the creator of the show has been keeping up with this because in recent episodes, there was an episode that I feel kind of wrapped up every loose end that my heart had. And while that was both healing and it was also extremely disappointing because, you know, it was a special episode. So it was very long, but it was just one episode. And I was like, these are things that I've been wondering about for years. Things that have been hurting me and reminding me of, you know, stressful situations in my current life, you know, or my past. And, um, like to see them all be resolved so quickly, I was really afraid at first. But now that I think about it, the show has a lot of head of it. And I think that, you know, the creator did this as an act of choice, you know, to take the show in a different direction and bring it back to its roots that were about community and, you know, loving everyone around you.
Speaker 3 00:07:21 I definitely agree with that. I think also we were talking about it on another show that really you and I had been having some debates about it's representation of disability. Um, she robbed princess of power that is on Netflix. We've been having a little bit of conflict when it comes to some of those characters. So in different characters. Exactly. So why don't you tell me about how you see yourself in that show and what ways we think it could be better? What ways we disagree with?
Speaker 2 00:07:45 Yes. Well, you know, after talking with you about it, I understand your side of it, but I still do see myself in it and that is painful. You know, now that I see it from that side, so there are a few characters in the show that I relate to. I really relate to cap tra and, um, what's her name? I forgot her name. We haven't watched it in a while. I'm looking at it. Thank you. Okay. Well, I can talk about the experiences with Khadra. So, um, basically cache experiences with, uh, Dora the main character of the show who is also, you know, the hero of everything, you know, you don't really argue with the person who saves the day. Um, they basically were like childhood best friends, you know, grew up in a really toxic environment where both of them were essentially abused, but in different ways, you know, um, uh, Dora was very much groomed, you know, you know, you're the best and we're making you so that you can someday make the world.
Speaker 2 00:08:50 Right. You know? And so she already thought that she was fighting for the cause that she ends up fighting for later. But throughout this whole time, um, meanwhile Ketra is well aware that the environment that she's in is very toxic because the people in that place do not treat her well. And they let her know very often that she does not belong. And she doesn't matter, even though her and a Dora like rival in skills, they're always had the head. And, you know, the reason why Ketra falls behind is usually because she's a little more emotionally invested. It's usually because she's getting jealous and she's a little bit more like, ah, like every, she gave me and not only for her team and her community, but also a Dora you know, her best friend. And, um, later in the show, I feel like the narrative also kind of has a little bit of like romance in it. Um, just because I,
Speaker 1 00:09:42 Which is great LGBTQ representation.
Speaker 2 00:09:44 Yes. Especially because I really do feel like these experiences really reminded me of my own. Um, but also, sorry, basically
Speaker 1 00:09:56 The specific character that we had a lot of disagreement about was in trapped data, who is someone who definitely, you initially saw yourself in that character and that character, a lot of people online code this character as being autistic. And I had a lot of problems with that. So it was definitely an incident where from a disability standpoint, I saw his character. It was like, no, I don't want this character to be me because I don't, I don't see her as being autistic because the things that isn't a problem with with her were just so intense.
Speaker 2 00:10:26 And I feel like the issues within tramped are the things that code her as autistic are very stereotypical to the point of them being very erratic.
Speaker 1 00:10:36 Exactly. Like as a character she's extremely focused on, um, tinkering. Like she is a very much like, um,
Speaker 2 00:10:45 What's the word like hyper-focused no, no,
Speaker 1 00:10:49 She does. Like, she like builds things, looking at vendor, she's an inventor. So she's very much focused on inventing new things and spends a lot of time alone and is very, she is definitely hyper-focused on the things that she does, but I don't think that's enough to code her as autistic. And for me, while I respect the autistic people who do see themselves in her, I have such an issue with her because she, um, abandoned, well, her friends abandoned her, but they don't realize that she's alive. But instead of trying to go back to her friends, she is taken by the, the, the more dark side, which also
Speaker 2 00:11:28 Includes the character that I identify with as well.
Speaker 1 00:11:31 Yeah. So my issue is just this idea of like her view being out of the standard of like right from wrong, where she knows that she's on the wrong side now, and as myself, I want to hold her to a higher standard that you should know better. You should go back to your friend. You should not be actively working to assist with the bad side. The people who know are causing
Speaker 3 00:11:54 Real harm to others,
Speaker 2 00:11:55 Just because you feel like somewhat lonely in the moment.
Speaker 3 00:11:59 Yeah. So that was definitely my issue with her.
Speaker 2 00:12:02 I think that's more where the writing comes into hand because I feel like that's like, why are all of the characters that remind me of my family and my loved ones coded as the bad guys in the first place? You know, like why is the one princess that has like significant body diversity? You know, like a bad guy and the person who, you know, is coded similar to like a person of color with my experiences and the one who's coded as autistic. Like that is the kind of thing where I see it just so many times over and over again, where I don't even feel like it's purposeful, but it's so harmful, you know?
Speaker 3 00:12:40 Exactly. And that's why those of us who are marginalized, people need to have this conversations about like coding in different characters about what does that mean for a character to be seen as a person of color or disabled or LGBTQ, even when amongst children's media, because it's important that we recognize that because everyone who is taking in that media, they were taking in a narratives about those of us who are LGBTQ. Those of us who are disabled, those of us who are black, like the two of us, you know, who live in those margins, who live with these different identities, we are shaped. And our life experiences are shaped by this media because this media is a reflection of us. And so it is up to us to have conversations and to hold people accountable to, Hey, this writing, when you code a character this way, and this character behaves in these actions, it does real life harm to me. And the way people perceive me, because of the ways in which the personal is also political people see us in a way that impacts how we see ourselves.
Speaker 2 00:13:48 And I feel like that is why it's so important that you started like the black disability collective, because that is a place that is inspiring people to, you know, take that power and take that control yourself, you know, get out there and do what you can do to like, make your little piece of creation in the universe, you know, whatever, like makes you happy, you know, do that and, you know, feel good about it.
Speaker 3 00:14:14 Exactly. And with that, so much of you and I working together and having these conversations is about how do we reshape these narratives that impact us? How do we create work? That is representative is representative in every single way. Whereas, you know, we, we talk about, it's important to talk about media and games and movies and shows and all of those different things. Entertainment is important and seeing yourself on screen and as well as in real life is very much a part of fighting for equity. But at the same time, we have be able to have that. And then also talk about politics and talk about the ways in which we are being hurt, you know, within the government, the ways in which we are being hurt at the local level at institutional levels, you know, in academia and how do those things work together and through the black disability collective, I am having these conversations and I'm working with you and working with other people to talk about where is the world failing us?
Speaker 3 00:15:15 How are we failed by mainstream movements to fight for equality that are only a surrounding race are only surrounding disability? And how do we take the parts of those movements that work and turn them into something that works for us? You know, because within a specifically, you know, the autistic community, it was Jake on Twitter and in different like areas and different Spears, there is a very prominent lack of black people being represented. And the voices that are loud, especially in communities like that are very loud, white voices. And so how do we talk about that and how do we say, you know, we want every single disabled person to be liberated, but right now that liberation isn't surrounding us in our experiences as black people. Because when we walk in a room as black people, as disabled people, as LGBTQ people, we are all of those things. And so how can we make people understand that we have to have movements that talk about being all of those things?
Speaker 2 00:16:23 I feel like that almost reminds me of something that I thought about today. Um, back when I was in high school, I learned about a working definition and I got like hyper fixated with them. And I was like, this is the coolest thing I've ever learned about. And I was thinking about it again today. And I was almost thinking about how life needs to be more of like a working definition kind of piece. You know, you need to continue to have those conversations with the people around you to make sure that like everything's okay. You know, because things are constantly being pushed out of equilibrium, you know? And when we reach out and do what we can to be a part of a community, like even when it's hard and even when you don't have a lot left to give, and you have to be really specific about what you're giving out, like it's good to even just make that small effort because it changes your life,
Speaker 3 00:17:19 Their minds. We have the recent conversations about emotional labor in regards to what does that mean when you live with a disability? What does that mean when you occupied this world as someone who's a woman, you know, it is international women's day. We talk about like women's labor. And I saw something that really changed the game on Twitter, where someone was saying that you shouldn't be using like the term emotional labor and applying that to your friends and thinking about that from, but hear me out, hear me out from a disability standpoint is thinking about the way in which we like use labor as a means of measuring capitalism. And do you want to think about your personal relationships with your friends in a way payment payment in a way that's like capital and I, that really changed it because yes, there are time for your performing emotional labor in that way. And as women, women are constantly asked to go beyond
Speaker 2 00:18:11 Work labor isn't inherently, is it inherently paid for? Yeah.
Speaker 3 00:18:15 I mean, no, there's a lot of, so I just unpaid work.
Speaker 2 00:18:18 I saw it more, sorry. It's like people just being allowed to be appreciated for their work, you know, because often people don't, people don't even need specific reciprocity. You know, we don't need, like, you know, if I am here for you emotionally, you have to be here for me emotionally,
Speaker 3 00:18:34 Not quantifiable. And that's not accessible either. Especially no live with disabilities is just sometimes the way in which we are able to show up for one another is different. And what does that mean when you're also as like women, women are held to this standard of, you have to be emotional, you have to provide this work a hundred percent of the time. And if you are not doing that, you are failing your communities. And how do you balance that as like, also like being black and like, you know, the ways in which black womanhood means being held with standard of carrying your community on your back all the time. And then you add visibility of that too. And it's like, how do we have these conversations? And then factor in all of these different identities when you are someone who lives with all these different identities and the different expectations that come with occupying these bodies.
Speaker 2 00:19:18 I feel like that's something I have so much personal experience with, you know, not to get into Zodiacs, but I'm a Virgo Mars. So when I get argumentative, I'm all about information. And so I'm actually really quick to like pull things and be like, okay, but that was racist. And that was, you know, like, and so I do that in my real life. And it is straining on your relationships, you know, like people don't want to hear those kinds of things, especially now your family and your friends. Um, but we all need to feel more comfortable talking to each other about it because I see that this is something that we just all do, you know, and people are more afraid to tell me. And I'm like, but I'm the one that always tells you. And I promise that when I tell you it's coming from a place of like, love, but I just need to be heard, you know, and I want you to be heard. That's something that matters to me. And that's something that I fight for and that stuff,
Speaker 3 00:20:13 It's only a conversation, you know, about accessibility at the interpersonal level is being able to have these conversations with people in your life saying, with where I am positioned, this is what I need, you know, and so many times like, as women, as black people, as disabled people, like we were failed there, you know what I mean? Especially talking about, you know, as someone on the spectrum, like, what does that look like at the interpersonal level? Like asking for what you need and advocating for that. Because oftentimes when we think of accessibility, we don't think about what that looks like in different environments. Like what you need to be, uh, to have accessibility at the universal level of the same thing that you need at the institutional level. And we are being failed at both levels, but the conversations are different.
Speaker 2 00:20:57 Yes. And I feel like they're really hard conversations to have, and that's why having, you know, the media and society and community backing each other up would really be helpful on that interpersonal level. It would really take a weight off of like everyone in the world, shoulders, you know, you know, it's just beautiful when like people come together, how much they can like see each other because when someone is afraid to ask for what they need, or they don't know what they need and they can't figure it out, they have a hard time getting what they need. And when you don't know how to get what you need, you take it, you know, and that's painful.
Speaker 3 00:21:35 And the thing with that as well as also how women are conditioned and taught, not to ask for what they need at every step of the way. And then you factor in disability with that, that leads to perpetual and accessibility. And that's not our fault as people who are marginalized, but we have to have these conversations with one another to acknowledge the split, the places and the spots where we have been failed and then fill in that gap together and make it a collaborative community process.
Speaker 2 00:22:03 Yeah. I feel like it's something that, yes, we need change, but it's so hard to change when you don't have that support. And so it really starts with those bare minimum things that get people back to baseline that get people comfortable and remind them that they're human being and they're autonomous and they deserve respect, you know,
Speaker 3 00:22:22 And especially talking about the ways of which in the media and in our everyday lives of women have our autonomy taken from us. We have it taken from us and learning how to fight for that back, how to reclaim that and how to do that in a way that honors yourself and honors the space that has been stolen from you and how that really looks different for everyone. And then we talk about media. We talk about when you first see yourself, when you finally see yourself, it changes the game and seeing yourself more and more, makes it easier to see where in your everyday life you are being failed and where your everyday life, your needs aren't being met.
Speaker 2 00:23:02 I mean, the other day I was talking to my mom and, you know, I've had my own experiences, but I feel like I stand for everyone when you probably agree, your parents had a really rough life in comparison to yours because life's been trying to get a little bit better. I feel like step-by-step. Um, and she was just like, I finally get like people being triggered and that like really shocked me because I was like, I felt like you, of all people should definitely understand that. But I mean, I remembered back when it first became a thing people were like talking about. And I did remember like it being like a cause of conflict in my house, you know? And, um, I was like, you can't tell people, you know, not to be like that. Not knowing that my mom had real experiences, you know, and she was just concerned about how she was being portrayed and probably the same way that we feel afraid, you know, that somebody's going to twist her narrative. You know, my mom also had, has ms. So she's a disabled woman as well.
Speaker 3 00:24:04 Yeah, of course. And the whole narrative thing, you know, that's something that you and I wouldn't be have worked together before. I have talked about trying to reclaim when people try to change our narratives and how traumatic and how horrible that feels when we are working double time, as people who are black and people who are disabled to take hold of the narrative. That is ours when we have figured out, okay, this is what has happened to me. This is my life in this scenario. This is like racist, or this was able to, because of this and then trying to put it out there and then having it received by people who were like, what, Oh, that's not, that's not what happened at all. And it feels like I was hypo subtle gaslighting in which we have figured out what our experience is, what our narrative is, and we are sharing it. And we are talking about this happened, and this is, this is a reflection of this. There's a reduction of this type of power, suppression reflection of, you know, white privilege is a reflection of, you know, ableism, you know, et cetera. And then having it thrown back in our face, like, Oh, that's not what it is and learning how to deal with it and how to be like, no, we have to assert ourselves. This is our narrative. This is our story. And you can't take that from us is ours.
Speaker 2 00:25:14 And that's something that I feel like really connects back to the media because that's been something that's been so empowering for me. Like finally actually hearing my voice, you know, coming out of other people's mouths, being able to take those things and like send this to someone and be like, Hey, this is out of my hands. But you know, Beyonce said it too, like, look at your, the way you're treating me is specifically like this other person, you don't see the pattern here, you know? And, um, like I feel like we were talking about reputations also just like Taylor Swift, you know, like I really gave her a bad rap for a while as well. And I got sucked into that rabbit hole because when people hate women, it really can breed some nasty stuff. And even though I like loved her music as a kid, you know what I mean? Like I was black and like, like I love Taylor Swift country music. And I wasn't even a question. Yes. And this is why we're connected, even if we didn't know each other back then, but I lost my way. And when we found each other again, you were able to reconnect me with like her music and her music still reflects my experiences. Like, and if that isn't the power of connection, then I don't know.
Speaker 3 00:26:22 And then being able to see that as like, we're here, like, you know, we're black, we're disabled, or we're gay. And still seeing that, you know, in other like women's like work and just like being able to explain like, Hey, I see myself in this work. Even if it isn't necessarily like me and like how to, we talk about representation, like existing, like within those like nuances, you know? And then there's also, you know, different people who we, who are us. Like I was thinking a lot about Solange Knowles has dropped her an album recently. I just started listening to it a little bit. And she is a black woman and she has an auto-immune disease and she has ADHD. I don't know if I told you that she has ADHD. So I look at her, I'm like, wow, I see myself right there. And that's so powerful.
Speaker 3 00:27:02 I remember when I first bought her last album, a seat at the table and I bought it on vinyl. And I remember going into exclusive company record store and Milwaukee and picking up the vinyl and just seeing her on like the front cover with her barrettes in her hair and being like, that's me like that is me. And that changed everything. I think I was, I definitely was about maybe 18 when that came out. So it really being young and still trying to figure out myself and then like seeing someone like hers, just so brilliant and like the music and the work that you have to produce. And seeing that I could do that too. Like I can, you know, create media for myself, like those little moments of representation or w what contributes to what we're trying to do here with the black disability collected, they contribute to what we're trying to do to change the narrative and to have these bigger conversations, like every single piece of it is important. Like the entertainment, the media is just as important as the political.
Speaker 2 00:27:57 One of those really important connections for me was made like this year, even, um, a friend of mine connected to me, to the musician, uh, LP. And she is like amazing LGBT like representation and the water representation we needed in this world as like, you know, a Scorpio like her emotions really go through. I mean, she's on a square, but she's Pisces, but her emotions really communicate through her work.
Speaker 3 00:28:22 So we talked about this a bit already, but on the other discussion questions we had was how does mainstream media fail disabled women and what are issues that impact disabled women that aren't discussed enough? So one of those big issues I, that comes to mind for me is reproductive rights and reproductive rights and parent rights for disabled women. I've been thinking about that a lot recently because there was, um, recently, uh, death of a very well known disability advocate and lawyer, um, Carrie Ann Lucas, who is very much known for having fought for parental rights for disabled women. So carry on Luke has actually died because her health insurer declined to pay for her necessary medication. And I think that's important that we talk about, you know, the ways in which disabled women advocate and fight and try to make the system better for all the rest of us, and then still die at the hands of the system, because we need allies to step up and join us when it comes to fighting against this unjust unjust system.
Speaker 3 00:29:31 But in her memory, she did a lot of work specifically to fight for the parental rights of disabled individuals. And she herself had adopted, I believe, four kids. So I've been thinking about that a lot recently about how we don't really have those conversations when we talk about, um, reproductive rights and parental rights, and think about the ways in which that impacts women with disabilities. I know that in a couple of other countries, there's a prevalence of prenatal screenings and with prenatal screenings, oftentimes that leads to, um, targeting like fetuses that have disabilities and making sure they don't, they're, aren't born. And that's really horrible. That's, you know, a really difficult issue. And I think oftentimes when we have these conversations and think about reproductive rights and think about like parental rights, we aren't making sure that disabled women have a seat at the table, but thanks to different advocates, we're out here trying to fight for a seat ourselves.
Speaker 3 00:30:38 I think issues that impact everyone in regards to disability and accessibility, um, would be, um, accessibility at like the higher education level is a really huge issue that impacts all of us. You know, I, it was my own experiences have really struggled, trying to ask for what I need and be accommodated. And when it, when it comes to, um, you know, attending college and, you know, being a disabled person like on campuses, and I know that there's a number of other people who have expressed issues with that. And I think that depending on no matter what your disability is, whether it be like a mental health like disability, or you're on the spectrum, or you have a physical disability, I think across the board, we all face issues asking for and advocating for and fighting for what we need when it comes to rec like a combination at the higher ed level, there's been a lot of conversations online.
Speaker 3 00:31:32 I've seen about, um, computer policies being really able to list in which, um, professors is completely just like bland band technology in the classroom. And people talking about the ways in which this is able is because it puts disabled students, the position where everybody knows, you know, you shouldn't have to out yourself, like quote out yourself as someone who like needs extra help or whatever you need in order for you to have the access that you have the right to it, you should be put in that position where, okay, now everybody's assuming like, Oh, everybody's looking at me. Everybody's knowing that, like, I need this help. It puts you in an unfair position that you have to go the extra mile and like, be like, have people, you know, looking at you, people thinking these things about you when the way to eliminate that with just to allow everyone to have computers, you know,
Speaker 2 00:32:19 And I think the saddest thing is the root of that problem. Isn't even like something that I feel like comes from like a super good place, because it comes from a place of mistrust and your students exactly hang money to, you know, be educated at this facility, not to mention it also just feels like a choice, make it less accessible, regardless of to who, because we already know that the school system is kind of, you know, fine line and to one specific person that does kind of well, and everyone else kind of slips through the cracks already. So to make that choice as a teacher, you know, it seems like that really good go to me,
Speaker 1 00:32:58 It really feels frustrating that at least in my own personal experience, as growing up with someone, with a disability you have in high school, you could have like your five Oh one C3 and you have like your own personalized plan. And then you go off to college having been, I'm not saying that in the K through 12 system, that accessibility is perfect, but you have things in place like a five Oh one C3 plan, and then you go off to college and you'd have to have an idea of what you need. And then you're faced with these like extra barriers in order to ask for the necessary care that you need in order for you to succeed in the classroom. And honestly, I feel personally that I would rather have one or two students like scrolling through Pinterest and class than have my disabled students feel like they're on the spot. And like everybody knows their business and putting people in that position.
Speaker 2 00:33:49 I feel like that's a reasonable thing to ask of your teachers. I honestly am not even in college because of the fact that school got to be too much for me. So I know personally that sometimes those expectations that are put on people can just be irrational when you're dealing with people with disabilities and, you know, autistic people like me and people who are black and just going through life with different expectations of me, you know?
Speaker 1 00:34:19 And it also in regards to, when we talk about like race and disability, the way in which white people who are disabled advocating for their needs and accessibility are met with different responses in black people who are advocating and asking for their needs with disability. Like if you look at the ways in which like black autistic people are free to compare to what autistic people, it's a huge issue, you know, in which that's what we have to have these conversations about like race as well, because race impacts the access to care possible for your disability. And it also thinking about the ways in which we talked about reproductive rights before a little bit, um, how, like my mother didn't get an epidural when she was in the hospital giving birth to me, you know, black women are seen as like not feeling pain. And when you see already that women with disabilities, aren't believed when they go to the hospital, you know, it was really famous golden girls episode in which Dorothy, um, is trying to get diagnosed with something.
Speaker 1 00:35:17 She has things wrong. She has chronic fatigue syndrome and every single doctor, she goes to doesn't believe her. And you know, the episodes from like the late 1980s and that sort of thing is still happening. I reread it every day. I read it all the time on Twitter. I read it all the time talking to other people like in the black disability collective, you know, I was asked of our members because am pretty sure I had gastroparesis, which is a rare disease. And some of the other, other members who have it said that it took them 20 years to get diagnosed. Like, and so when you have this, you know, a situation in which women with disabilities are not being believed at the doctor's office, and then you have black women are being told that they don't feel pain the same way as white women do. And then you throw those together and you're like a black, disabled woman, the way you're going to receive your care is not going to be the same as white people or white women with disabilities, you know, and an,
Speaker 2 00:36:10 And growing up as like a black autistic person, sometimes the world may not even notice that about you and that alone can cause so much damage, but like growing up, I never knew. And, um, like my first like real experience up close with like disability was when my mom was diagnosed with ms and high school for me. And so I did start learning about that, like kind of younger, but never about myself. And so even seeing the same kind of things happen, you know, being in those spaces, you know, learning about different things. I was never able to like, even imagine that that was my space, you know, until I met you.
Speaker 1 00:36:51 Thank you. And even so recently there have been articles and discussions about this quote, like lost generation of girls talking about specifically women with ADHD who grow up, feeling like they're stupid and the same thing with autism as well. When you look at the rates of diagnoses, it's all like written in all the literature is about white boys. And so when you're not white and you're not a boy, where does that leave you? And how come we are still having these same conversations? How come we are still struggling to get the diagnoses and get the care that we need. We have to acknowledge that, Hey, you know, as black people, as disabled people as limit, we are not being treated the same way. And from there, how do we advocate for generating real change at the institutional level there? So also with that, we were talking about just recently with like all the snow in Minnesota, how snow removal is a disability issue.
Speaker 2 00:37:51 I mean, even personally, I know that I don't leave the house. Like, unless someone will pick me up and drop me off, I'm not going anywhere. And I mean, I haven't loved the house. Maybe like twice in the last couple of months, that's not healthy. And I love being outside, you know?
Speaker 1 00:38:10 No, it's definitely difficult. I mean, as someone, a lot of people juggle a lot of black people out of anemia, but I have various severe anemia. And for me being out in the cold too long, like it does real damage for me. But even at not just us, I'm thinking specifically about a lot of folks who are wheelchair users, the world isn't accessible right now, you know, sidewalks aren't being plowed or mowed, and there's not a way to get around that accessible. And, and that is an issue, you know, like that impacts all of us across the board who live with disability.
Speaker 2 00:38:41 And that's not just an issue in Minnesota. Like I know like one of my mom's friends she's snowed in her house, like in Pennsylvania, this is something that like also is a bigger issue for people in those rural areas or people who live in poor communities. It's it really is.
Speaker 1 00:38:58 It's a, it's an issue that is very much not just our community facing, but there's not still solutions for it yet. You know? So I definitely feel like when we look at the news, we look at people talking about different issues. You know, there's so much coverage about like the snow right now, but like, why don't we talk about, Hey, people are getting sent in their homes, Hey, this is impacting people's ability to get around. You know, I want to see more of that. So people know, you know, because maybe if someone who was able-bodied sees that they could go, Oh, you know, if my neighbor was disability is snowed in, I could go help with that, you know,
Speaker 2 00:39:35 Groceries or offering rides. Yeah.
Speaker 1 00:39:38 We have to make sure that we are being represented. You know, we are that people are seeing us in the news. People are seeing like the, the things that we face in their face, you know, because if they don't see it, they don't have to think about it. Whereas we can't not think about it because it impacts all that we do.
Speaker 2 00:39:56 And like when they see it, hopefully, you know, that sparks, that like reminder in them that we are all connected. And it's very important to remember that when you're living with other people.
Speaker 1 00:40:09 Yeah. My last big question was talking about who are some disabled women whose work fuels and inspires us, inspires me. So I had a couple of answers for that one, because I think there's so many specifically disabled women of color who are doing great work when
Speaker 2 00:40:26 You already mentioned Solange earlier.
Speaker 1 00:40:29 Yeah. I love Solange so much. Um, so specifically I was thinking a bit about, um, the movement online called access is love, which, um, is created by Sandy ho Mia Mingus and Alice Wong. And Sandy has a disability community organizer and activist. And she also, um, founded disability, intersectionality summit. Um, Alice Wong is disability advocate, a media maker and consultant. And she founded disability visibility project, which is the community partnership, a story corpse and an online community dedicated to creating and sharing and amplifying disability media. And I will say personally like her work has definitely helped shape my work. I'm really inspired by her. She's interacting with me on Twitter a little bit, and I definitely fan it a lot. And she also has, co-partner some other products such as like hashtag triplet, which is conversations for disabled writers and hashtag Crip. The vote was the non-partisan online movement, encouraging the political participation of disabled people. And then Mia Mingus, who was a writer, educator and community organizer who, um, fights for liberation as well and writes on her own blog called leaving evidence. Um, another person who's supposedly they black and disabled, who I really am inspired by, um, is Villa Thompson who created the hashtag disability to white and also, um, founded a ramp, your voice and ramp. Your voice is a disability rights consultation, advocacy organization.
Speaker 2 00:42:04 And I feel like another person in the media whose representation really matters right now is Selma Blair. And as I talk about, my mom has ms. And so I have a really close relationship with not only like ms, as like a disease, but also the community because my mom and I are both really active in the community. And, um, basically seeing her, you know, not only, you know, on the red carpet with a cane, but later doing the interviews and talking about her real experiences and seeing how her experiences even mirrored, not only my mother's, but other people I've heard, who have been diagnosed with ms. Almost everyone that I know who was diagnosed with ms. Talks about their journey to that and how it was really hard to be heard, uh, when you have a lot of neurological symptoms that can, you know, present in all different forms across your body.
Speaker 2 00:43:02 And they go away after some period of time, some of them it's very easy to ignore. Um, and my mom even thinks that she struggled with ms for years before even like considering going to the doctor because women have such high expectations on them that there's almost no space for, um, women to even consider what support they need. Medically even, uh, she talked about how she was living in an ms relapse for years. And I know that those are things that can last for a range of time, but those symptoms are really hard to like live with. And if a doctor would have noticed those things, she definitely could have been treated. And I feel like when there are so many options for medications, it's really important that people have access to those things. Not only technically with their doctors, but access to people who listened to them and their experiences and care about the things that are going on with their bodies.
Speaker 2 00:44:16 This is something that isn't just a fear for specifically people with ms. This is a fear that all disabled people have. You know, if I go into the doctor and I talk about this thing, are they just going to, you know, latch it onto something that they already have diagnosed me with? Or are they really going to explore this thing to make sure that I'm as safe as I can possibly be? Um, I've definitely seen that in my own personal life. I was actually being watched for ms for like I did the process for like about a year. And I got two MRIs in that time and capped off my deductible, which was extremely high at that time. And I was like, you know what? I can't afford to go to the doctor next year. And now we're in that year after that next year. And the, the effects on my health have actually been pretty bad. I wasn't really expecting that, but seeing people take action for their health is really important. And seeing the representation of, you know, like even a mother who is, you know, important and famous, like not being able to have that time to take for herself and her health until it was just that point. You know? And I relate to that personally, a lot. Another really cool
Speaker 1 00:45:41 Personally, I try to follow along in the media is her name is Amina. And on YouTube, she can be found under the handle tassel fairy and Amina is someone who identifies as black and autistic and magical. I really love her and her work because she does a lot of content creation, YouTube videos. Like she tweets things like that. Talking about like her experiences as a black autistic woman and someone who is she's in her thirties and talking about what it's like, you know, to get diagnosed with autism a little bit later in life and living, you know, as a black autistic woman, she also, I'm a big fan of hers because we have very similar style. She always loves bright, bright pastels and really magical looking colors. And like her Twitter bio is a rainbow in your cloud. Like I definitely heavily identify with her.
Speaker 1 00:46:31 And I really believe that her representation is so important for people like me, who, who are so aware of that we're severely lacking in black autistic role models in the media and people whose lives are similar to ours. She's also plus sized I think is very important as well because we need to acknowledge body diversity within these movements. You know, we need there to be like a fat black women who are doing this work, you know, fat, autistic, you know, disabled women, you know, taking up space and being visible and sharing their looks and their fun time. Then she just tutorials on her braids and different things that she does. And I think that for me, especially, it feels so powerful to go on YouTube and watch her videos and see someone who I can really relate to and I can connect with represented on my screen.
Speaker 2 00:47:24 And then
Speaker 1 00:47:25 In regards to also media and shows, um, the triple, the triple cripples, um, is a show podcast and platform, uh, for women femme and non binary people of color living with disability. And then finally, another one that really inspires me, um, is, um, four wheel workout, who is the creator of hashtag disabled womanism and hashtag without the ADA. And so each of those people or groups of people that I just highlighted are all women of color or who do different work, um, surrounding disability, whether it be doing some political work or advocacy or in the media creating podcasts and things like that. And so being online and like seeing these different women of color women who look like me and live experiences similar to mine have helped me want to create this platform that I'm creating with the black disability collective and have fueled me trying to do this work and create content so other people can see themselves the way I am seeing myself. So these women that I just mentioned, and I think that's the biggest part of the black disability collective is being able to provide a place for us to see one another and to fight for us to be seen
Speaker 0 00:48:44 <inaudible> yeah. They not going to get it from the <inaudible> <inaudible>
Speaker 1 00:49:01 To find out more about the young women's initiative of Minnesota, please visit the women's foundation, a Minnesota website to learn more about the black disability collective. Please visit our Twitter page at black disability or our Facebook group, the black disability collective. Thank you.
