Empire State of Rights

Linguistic Ableism: History & Sociological Evolution

• Jessie Wusthoff & Mary Fashik • Season 6 • Episode 13

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Jessie Wusthoff, a DEI consultant with a focus on disabilities, and Mary Fashik, creator and host of The Politics of Disability podcast, discuss the history & sociological evolution of linguistic ableism and the harms of ableist structures within our society today.

*Show Notes*

Lizzo and Beyoncé song lyric articles:

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(The views, information, or opinions expressed during the "Empire State of Rights" podcast are solely those of the individuals involved and do not necessarily represent those of Disability Rights New York.)

Content Warning The following episode will be addressing linguistic ableism. You will be hearing ableist terminology at various points throughout the episode to showcase the harms of discriminatory language. Please proceed accordingly.

HOST:

This is Katrin with Disability Rights, New York. Welcome to our Podcast, Empire State of Rights. We are here to bring you information on the most relevant topics regarding disability rights and advocacy. Today we welcome Jessie Wusthoff, a DEI consultant with a focus on disabilities, and she is joined by Mary Fashik, creator and host of The Politics of Disability podcast. They are going to discuss the history and sociological evolution of linguistic ableism and the harms of ableist structures within our society today. Jessie, Mary, thank you so much for joining us today.

JESSIE:

Thank you for having me.

KATRIN:

And before we start, let's introduce ourselves and use our audio descriptions. I'm Katrin Haldeman. I have long brown hair and it's a little bit curly. I have a white blouse on and a necklace that has a little blue stone on it, as well as another necklace that has a little silver tree. I'm my late forties and I have light eyes. Jessie, do you want to go next?

JESSIE:

Sure. I am Jessie. I am redheaded with about medium length, straight hair and bangs. I'm wearing a small heart necklace and a long sleeve gray top. And I'm sitting in front of two bookshelves with a bunch of art books.

MARY:

My name is Mary Fashik and my pronouns are she/her. I am a North African, West Asian woman with light brown skin, wearing dark glasses, headphones, speaking into a black microphone, and wearing a black and white striped shirt. Coming to you from my home office with cream covered walls on it.

KATRIN:

Thank you both so much. Now let's start to share with our audience the work that you both do as disability activists. Mary, do you want to start us off today?

MARY:

It will be my pleasure. So, this is a story I always tell when asked about my activism. It's like celebrities that tell the same story about how they got discovered. In 2018, I was at a local grocery store with my best friend. I went to use the restroom. My motorized wheelchair barely fit in the accessible stall. When I came out the stall, I looked at my best friend and said,"Who decides what's accessible for me? I'm tired of non-disabled people getting to decide what is and what isn't." That day the hashtag Upgrade Disability was born. There is now a global disability justice movement with a focus on intersectionality. I believe that disability intersects at every identity and until society meets us at our intersections, there will be no collective liberation.

KATRIN:

Mary, thank you so much for that. And Jessie, do you want to talk a little bit about what you do?

JESSIE:

So right now I am pushing for disability inclusion in business settings, corporations. And basically, disability is never in the diversity, equity, and inclusion plans. It's left out 99.9% of the time. So, there are so many broader systems that really need to be broken down and that's going to take a long time. So, I like to, in the meantime, make sure that we're pushing for self awareness of how individuals bring these systems to the table and how they perpetuate them without realizing them a lot of the times. So, how do those systems and views and biases really come to day to day work around how they interact with potential hires and peers and reports and whether it's through my keynotes or trainings, I really try to help people understand what attitudes actually got us here and how they can do better. A lot of people have good intentions, but their actions are not aligned with their intentions. So, I try to close that gap.

KATRIN:

Thank you so much for sharing that with us. And so, as we get started on this conversation, something that's really important that we have to discuss, even as we get started, is the significance of the history of influence on our language use today. And Jessie, you just talked a little bit about, you know, the percentage, the rate of disability inclusion within businesses and it is not that high. And we're doing our best in kind of known ways. And I even say that thinking we're in the industry. So known ways for us is very different than maybe someone who is not. Let's talk a little bit about language as far as all of these things are concerned. We're looking at ableism within, whether it's business or in general population and general day to day life. Let's talk about that. And Jessie, let's start off by sharing a little bit about your blog and how the history of this subject in particular is a topic for us today.

JESSIE:

Yeah, being in a graduate program for disability studies has really helped me learn a lot about my community's history, which has helped me really understand the best strategy to take when it comes to making an impact. So, my goal for this specific blog was to really help people understand how racial and disability oppression, a lot of ties to each other and are quite intertwined in the US as well as other countries. So, because without understanding how things actually got here, like I said before, we're not really going to have the most impactful strategy. So, work is often done in silos when it comes to the -isms. Racism, disability ableism. And when we take a step back, not as far as I would like to, but when go all the way back to maybe the late 1800s, eugenics, which is basically taking actions to create the superior gene pool, targeted not only race, which a lot of people know through the Nazis obviously being a huge example, but also targeted disability and other groups, queer communities, and not always separately. So, when we look at the late 1800s and early 1900s, disability wasn't a term, it wasn't used, but words like feeble-minded and moron and idiot were. So, you might hear people say like, don't use that word. That word's offensive. And when you understand the history, it really helps you understand why. So, black communities were actually disproportionately diagnosed as quote unquote feeble minded, which was a way to further oppress them and argue for removal from society. So, what I really warn against in the article after a little bit of understanding these concepts, is the reality is the danger that really lies in starting your criticism of these practices around people being quote unquote, misdiagnosed, and therefore they should not have been subject to practices like institutions and like sterilization, because that argument really implies that other individuals should have been subjected to the eugenic practices rather than denouncing any human being being treated that way. So, it's where trying to fight for justice for one group can actually further oppress another group, and that's crucial to understand.

KATRIN:

And Mary, can you comment a little bit on that? You talked a little bit in the beginning about who you are and intersectionality. And as you talk about if intersectionality, if society is not able to meet us at our intersections, there will be no liberation. I hope I got that quote correct, because I think it's wonderful. Could you comment a little bit on what Jessie just said? I feel like the tie in here is it's so close and it is so profound in the way that both of you are working to really bring education to the general public about how these things got here, how they got started, and how they're being perpetuated. So, Mary, could you talk a little bit about Jessie's work as well?

MARY:

Yes, absolutely. So, what Jessie is doing and what I do as well is so important to educate organizations and businesses. And when I go in, and when I'm asked to teach about why these ableist terms should be taken out of an organization's documents or everyday going on. The first thing I do is teach the history, because there's no way we can move forward without understanding where we've come from and why these terms are harmful and just awful. And one thing Jessie and my team was talking about with black community, there was a belief that individuals who were black had smaller brains than white individuals. There was actually a scientist who published something and said, this is why black individuals are inferior to white individuals. So, there is your link between ableism and racism. And I always say, your anti-ableist journey is inherently tied to your anti-racist journey and vice versa. If you're going to go on an anti-racist journey, you also have to go on an anti-ableist journey. Both of those things, as Jesse pointed out, are tools of white supremacy.

KATRIN:

As we are moving through our everyday lives now, with so much information coming to us right from social media and everything that's available to us on the web, we all hear it. I think you can't say that anymore. And everything is a trigger word. And whether it's cancel culture or any of these little hot topic words without thinking about the history, right? So, to both of your points, there's this idea that well, you can't say that anymore, actually never should have been said, right? Like these words shouldn't have been used. The descriptions, especially diagnosis descriptions, should never have been used. And knowing that these words and these terms were not just put together by people on the street, as you said, Mary, there's documentation on how these words were put into systems that further oppressed different communities of people. Let's talk about the cycle of language and change, right? Because we're not talking about fortnites anymore. We're not talking about how we're planning our lives in that way. The fact that we're using the Internet, everyone, and cell phones for those of us who are using them, language changes, and that's something that's pretty constant. And we are seeing groups of people that are reclaiming words. So, there's the movement, especially with Crips the vote, reclaiming the word cripple. And again, for our audience, whomever is listening, this is just a reminder that we will be using terms and talking about words that are, in fact, offensive, and we're talking about their history. So please remember that this is the topic today. So, let's talk about that. Let's talk about reclaiming words that are, in fact, offensive. However, when they're being used to empower a certain group, let's talk about how that change is effective. We're seeing in New York State how they've taken out the word mental retardation in our legislature, in our laws. And that was just a couple of years ago. So, let's talk about that. And Jessie, if you want to start, talk about the evolution of language and reclaiming words to empower communities.

JESSIE:

When it comes to language, basically the only constant is that it is imperfect and it is ever changing, right? And so it is hard to know what will come next. But I think when it comes to language related to disability, right now, we've seen, and you alluded to this, we've seen so many words that were a diagnosis, whether the descriptor was appropriate or not as far as natural disability, we've seen these quote unquote, diagnoses that are basically appropriated and they're never appropriated into something positive, which I think says quite a lot right there. So, right now, I think it's important to understand appropriation. Those diagnoses turned into insults most of the time or just other slang. And then reclaiming are different concepts. Crip the Vote being reclaiming of a word used harmfully into something empowering, right? So, I don't think that it's as cut and dry as reclaiming changes everything, but it is something I do respect people being passionate about. Another great example of where I do think we're going is Lizzo removing the word short for spastic from a song she recently came out with. Beyonce did the same thing. And I really like, Lizzo's apology was humble. It was completely acknowledging the harm. And she fixed it, literally, like re-recorded and fixed it. So, that, to me, is an ideal response, that learning and doing better. But I think those kinds of call outs and people listening are where we are right now.

KATRIN:

Mary, can you talk a little bit about that as well, especially in terms of intersectionality? When we do talk about Lizzo and Beyonce being two of the women who have come forward to change lyrics, they also happen to be 2 black women who are changing lyrics. And I do find that interesting as well, that there have been plenty of songs over the years, over the history that have had equally offensive words in them. Mary, can you talk a little bit about that and your take on how that all unfolded?

MARY:

Yes, absolutely. Thank you so much for allowing me to comment on this because this is something I'm very passionate about. Who was calling out Beyonce and Lizzo? White women. White women from the UK. They were the ones calling out black women. And to them I say, please take several seats until you are calling out the ableism in our community that happens every single day. Because you can be disabled and be ableist. Those two things are not mutually exclusive. And these white women from the UK who were so offended by this term - Now, I will add that I have cerebral palsy. I have spastic cerebral palsy. So, if anyone should be offended by the word spazz, it is myself who could have been called that derogatory term. But it's also a medical term, so there are nuances to this. But unfortunately, racism takes away all those nuances. We aren't talking about Big Time Rush who is a white band that they use a term, and when they use a particular term, it was fighting care and was actually preventing the disabled community from finding information, medical and peer advice that they need. But nobody talks about that. But everyone wanted to jump on the bandwagon of Lizzo and Beyonce. And this happens time and time again. We often criticize advocates, activists of color, or black activists and advocates before we criticize white ones. And that is something that needs to be brought to our attention and needs to be talked about more.

KATRIN:

And I think you're right. And as we look at that specific example, those two specific women, as Jessie said, the response was the one that we hope for, right? No matter who it is. And here it is that we see these two black women also being leaders in this area, which is something that I think is also cannot be lost in this conversation, right? And as we think about the societal factors that go into all of the conversations about language and who it is that is making the change, right? And how these changes are being made and to what level? We are fortunate that both of these women have such a profound platform, right? They are reaching people worldwide. So, while their response is one that we're hopeful for, they also have a platform that they can really spread this message. So, as you said Mary, we're needing to factor in a lot of different things as all of these these incidents take place. And Jessie, your point that change is going to be constant for sure in language, that hopefully we'll see more of that on such a large stage. So, let's talk about how language is so very ingrained in our norms, our systematic and sociological factors such as privilege, as well as otherness, as well as cultural notions of curability. We talk about, of course, diagnosis based adjectives that are, I can't think of one that is a positive one, as well as looking at disability from the standpoint of curability, Let's talk about those issues in terms of language as well, right? We have also the infantilization of people with disabilities, but we're talking about words and they matter. And as we talk about what that specific word means, the infantilization of people with disabilities, how that ties into language, it is so important that we make these connections and see how the history of all of these words tie in to that.

MARY:

Here, as someone who is always infantilized by non-disabled individuals, this is something that really gets under my skin. I can give an example. I went to an appointment one day, and I got into the elevator, and at the time I was taking myself to appointments, and there was an older woman who looked at me. She said,"Are you here by yourself? Good for you." And I got so incredibly angry. I looked at her and I said,"Did you get dressed by yourself today? Good for you. I'm proud of you." And she looked at me like I said the most offensive thing to her. And I looked at her and said,"You see how silly that sounds?" And she had no response to that. And prior to the pandemic, when I was going to the grocery store, I would have people, I would be getting out of my vehicle and people would be like,“You’re so inspiring.” And I'm like, I'm literally trying to go grocery shopping. There are inspirational things, don't get me wrong, but me getting out of my vehicle is not inspirational. And trying to explain that to someone because I've had people close to me who are younger, a younger generation who say to me,"Well, Mary, what's wrong with you being inspirational? They truly don't understand. And it's hard to explain why there's impact over intent. And I always say the road to ableism is paved with good intentions. So, you may have good intentions, but you're still being ableist.

JESSIE:

I think a lot of language and actions - I do think actions speak louder than words sometimes. And I think that's where infantilization really shows up the most, quite frankly. It's not the actual words, it's the use of the words. So it'll be like, oh, you're so brave. The word brave in itself is not offensive, it's the use of it, right? So I think that's what infantilization often looks like. Or if you're clearly doing something fine, someone offering their help. So, it's not that it doesn't show up in language, but I think that's where I personally experience it the most and have personally seen it the most. I think when it comes to where we are today, it's still very prevalent. I think this idea of how we can do better comes down to how am I stepping into this? How am I approaching this? Does this person actually, are they struggling to open a door? Anyone with, like, a bunch of bags struggling to open a door is someone I will help open a door, right? That's a normal behavior for me. So that to me is not the same thing. So to me, it really is the use of everyday words that perpetuate ableism is what I experience and see the most.

KATRIN:

We talk about inspiration or inspiration porn a lot in a lot of conversations we have. And truly there is there is not the understanding of what that means. Where like why is this movie that is inspirational about a person who has a disability? Why is that not the right messaging? And when I think about how language has been woven into our social interactions, whether it's with media or movies in any way, we've seen this over and over and over again, right? And even when we look at the way that we're presented with what a family looks like, what a typical working environment looks like, we've been shown since we've all been able to see or hear or be told about any type of media, that this is what is typical. And I think that these conversations are the ones that have to say just because this is what we've been presented with as typical is not correct. And making the reality of a community apparent is something that I think that we're talking about it in so many different arenas, right? Where we have even the widely accepted sign for someone with a disability is certainly a person who is using a wheelchair, right? When we look at parking spaces or having a pass in order to show that you are going to use a certain spot or a certain place in a building and there are so many different disabilities and we say this all the time. If you've met one person with this disability, you've met one person. So, we're looking at addressing language, but we're also looking at perception of where the disability community really is. And it's everywhere, right? And so, when we are talking about how we need to further educate and we need to bring more into the view of the general public, we're also looking at other issues around hierarchy. And when we talk about this, we're talking about it both within the disability community and outside of it, where the perception of who has a disability and who does not is something that is not fully understood.

MARY:

You know, I always think about this question about hierarchy, and it always takes me back to the documentary "Crip Camp" and when Denise is talking about the hierarchy of disability and how people with CP or cerebral palsy are at the bottom of that hierarchy. And I feel that every single day both within and outside of my community because I am not powerful. I have impaired speech. I say things that other people don't want to hear. I'm very opinionated. My opinion can be polarizing so I'm not palatable. I'm not the pretty blonde in the wheelchair that is gonna make you feel good about yourself. I'm simply not that person. And like I mentioned, both in and outside my community, that really affects how people receive me, perceive me, perceive my message. And I have been passed up for speaking engagements because while I look good on paper, when I begin to speak and people hear my speech, I am no longer appealing to them. And also, when you mention about people not looking disabled, I am also chronically ill and a lot of times that part of my identity gets ignored because I couldn't possibly have a physical disability like cerebral palsy and be chronically ill, right? Those things are not mutually exclusive, but they are often treated as though they are mutually exclusive.

JESSIE:

Yeah, there's a lot of nuances too, to this hierarchy. I mean, I am very, very privileged between my fair skin and my voice and the fact that my life has been very different the last 3 years with people working from home. I am a cropped image, right? And so, I don't have to explain myself in the same ways that I did going into the office, which has been, I mean, startling at times, to say the least, because I used to be like literally tearing up in pain on my way to the office so it was kind of crappy when I got there. Things like that have been very good for my health but when it comes to my mental health, it messes a little bit with my self image around. I've always lived on the margins and I have tons of privilege that I've had through birth and there are these real impacts. I think when it comes to the hierarchy, what I do want to go back to a little bit is the history because when it comes to congenital versus accident origin of disability, it is more nuanced. So I think people need to understand war veterans, for example, are seen as making a sacrifice. They were actually able to receive financial support from the government before people injured at the job that they were at, which there were tons of injuries at the time, given industrialization. So this suggests some sort of hierarchy, even if the same physical outcome is at play, such as like a loss of limb. For non veterans, you also see this range of tragedy to a deserved outcome, quote unquote deserved outcome of poor behavior. So if you have two individuals who were in a drunk driving accident, the person who was hit is going to be treated very differently than the person who hit the person. Because if they have, depending on who has the disability, even if the person in the car who was hit has the disability, it's a tragedy. Person who was driving drunk, they got what was coming to them. And that's horrifying in that it applies a moral judgment against the cause of disability. And that's also very much at play when it comes to the hierarchy. So, to Mary's points, the more you fit into the mold of society, the more privilege you're gonna have access to. And that's why so many people cover, to avoid that othering process, basically, which is interesting, because when you try to fit into the mold of normalcy, when you do need something, like a work accommodation or access to services, you're less likely to be believed. So if you have multiple disabilities, as Mary and I do, getting some sort of accommodation or entry to a room even, not necessarily physically, but that social entry, it really can be received differently depending on what reason you're citing. And I know people who have basically let people assume it's for the visible reason instead of the reason that is not as apparent to the viewer, though I hate that word around disability. So I think that's important. And when you understand privilege, understanding the room and the context that you're in also matters quite a lot too. If I'm in a room of all able bodied people who are extremely athletic, my disability comes into play a lot different than when I'm at home working on a computer as like an obvious example.

KATRIN:

Those are all really good points. Thank you, Jessie, so much for bringing all of those to our attention. And to further that part of the conversation, let's talk about the importance of education on appropriate language as well as allyship. And Mary, you touched on this a little bit about people that maybe are close to you or people you've been in contact with who maybe would be allies in a lot of different ways, but maybe they don't understand necessarily how to truly be an ally, especially when it comes to the disability community. Mary, can you start us off and talk a little bit about the importance of that education as well as appropriate language and how that really feeds into really solid allyship?

MARY:

Well, I think the most important thing is to listen to disabled individuals and do not strip us of our autonomy. So if we're telling you that we identify as disabled and we prefer identity first language, that is being a disabled person rather than a person with disability, please listen to what we're telling you. For the longest time, I was very adamant about I wanted to identify as a disabled person, and I still do. But now I understand why both disabled person and person with disability are so important. So please listen to a person who is telling you how they want to identify. Do not strip us of our autonomy. And I always joke because there's always, people say, just ask. Just ask. And I always say, don't ask me anything. The reason I say that is if you're a stranger, I don't want to answer or embrace a question from a stranger. So I don't prescribe to the just go up and ask or just say hello. I don't personally prescribe to that. You can ask me if you could ask me a question. I think that for me, that's a way of being a better ally. Don't assume that you can just walk up to me and ask me an abrasive question. Be polite and say, do you mind if I ask you a question? And depending on how I feel about you, you may or may not get a yes to that question. But the assumption that all disabled people want to identify a certain way or that all disabled people feel the same way about certain things or chronically ill people, just because they have the same diagnosis they have very different experiences. I have a ton of chronic illnesses but my lupus is not the same as a friend of mine with lupus. We may experience some of the same symptoms but in very different ways. I think stop making assumptions and just listen to what the person is telling you.

JESSIE:

Absolutely. And I really want to double down on even if you meet 2 people who use the same language to describe their disability, it is not the same experience. So I use the overly simplistic example of if I'm in a room of a bunch of star athletes, and there are many star athletes with prosthetic legs. Now mine's extremely unique, but I'm sure if more people had it, it would still be true, right? And so you see not infrequently the bravery, inspirational poster, with the person with the prosthetic climbing, rock climbing and things like that. So, that person does exist. It's not Photoshopped, but the language we use to describe reflects what we assume the experience is, right? I think when it comes down to education around language, Mary touched upon it perfectly, around different people have different preferences, and what language they use is what you should also use, though there are exceptions, there are certain words that people might use for themselves, different communities. We can think of easy examples that you should never use if you're in that community. And what I really try to help people understand in trainings is you will mess up. You're gonna say the thing the person does not want you to say, and you're going to be uncomfortable and shocked and focused on your attention because it was exactly what the person you talked to yesterday wanted you to say. And that is our right as a huge, diverse community, quite frankly. I can't think of any other community that agrees fully 100% on their language. We're not different. So helping people understand that and how to apologize and just move on, because otherwise you're making the situation worse for the person because you put them in a position where they feel like they have to make you feel better. And again, that's not exclusive to disability. For me, when it comes to language, it's understanding the general power of language in communicating effectively that can be helpful, because I think a lot of people, maybe all, I don't know, really want to communicate effectively at the end of the day. So a lot of companies, they want the list of the good words and the bad words, right? And sure, I absolutely get that and respect, people panic and they want the easy answer. But for me, I would much rather you understand the why behind 5 words and be able to use that framework with other language and other words because I think it will really just help your brain adapt. There is a science behind using new language that is relevant. And like I said, it's more scalable. You're going to understand other words that people might mention. I love the work of there's an inclusive language expert, Dr. Suzanne Wertheim, and she and I are looking to put together a more workshop focused training around disability language and it's going to start with broad language concepts. That's important to understand.

KATRIN:

And Jessie, you make such a good point. I think we talked about this in our pre-podcast interview about people are going to get this wrong, right? This is going to happen. And this isn't the only area in our lives where this is going to happen. We're all learning creatures, right? And we need to be able to experience something in learning where we're not going to get it right, but we'll be able to be taught how to do it better the next time. Because like you said, you may be having a conversation with someone one day who says, this is how I like to X, Y, or Z. It doesn't really matter what the subject is. And then the next person, if you believe that they are in the same community and you use the same language or the same ideas for the next person, they could in fact be terribly wrong. One of the things that I think that a lot of professionals, no matter what industry they're in, and of course, as we get older, no one wants to be wrong, right? No one wants to, it's this embarrassment of oh, I should have known better. And if you don't know and you don't know better, then the only way you're going to learn is to whether it's ask, get more education, read, look into it, research, right? And I think about learning any other language and really this is what we're talking about. You're talking about a language workshop that you're going to start and using broad terms, if anyone has ever attempted to learn a second language, no matter what it is, you have to start from the beginning. And then you will find out that there are several meanings for 1 word and how do you use those words appropriately, depending on what you're talking about. So to your point, I think that the real reluctance to be wrong and to get it wrong is something that we should go in knowing is going to happen and that moving on is the way to really start being an ally and saying, I am ready, willing and wanting to learn and to do better. And go ahead, Jessie.

JESSIE:

The one thing I want to add too is if you can Google it, you should try to Google it. And it's not that there is perfect information online, but if someone says, person with a disability and the person they're talking to says disabled person, you can actually Google the difference between the two instead of making that person explain it to you and putting that burden on the person. So I just wanted to add that, too. There are resources out there, and if you go to disability and if you go to certain organizations that have resources ready and waiting, they're going to be more reliable if they're actual organizations that have a good reputation.

KATRIN:

Right. And to Mary's point, she may not want to be the educator that day, right, Mary? I mean, we all have information that we can give, but certainly the assumption that you're there to really educate anyone who has a certain question for you in and of itself is offensive, right, Mary?

MARY:

Exactly. Also, people pay me for that education. Unless you're going to like, you know, pay my fee, then I'm probably not going to sit there and educate you.

KATRIN:

Very good point as well. And as we're talking about all of these issues in allyship and education and having people really starting to learn on their own, let's talk about how that in and of itself will hopefully lead to equitable spaces for the disability community, whether it's in business or attending an event. What, how are these things related? Jessie, do you want to start?

JESSIE:

Sure. I think really understanding it's normal. We're talking about roughly 20% of the population. So if you can normalize the normal, you're going to be able to, I think, show up in the way that you intend more often. So a lot of it comes down to that exposure. Even having a disability, a congenital disability, I knew no disabled kids growing up. And that really put me on a more ableist journey because it wasn't normal and it really messed, obviously, with how I saw myself to be the only one. I was always the only one in the room, right? And so I had no exposure to different language people would prefer and things like that. There was no internet when I was growing up, that'll tell you my age a little bit, but there was no internet, there was no Google, there was no Facebook until I was through college, right? So I didn't have ready access to meet people online and who were in the community like I do now. And it's really been helpful to understand and why I went to graduate studies program was the danger, especially with all my privilege of creating content and doing a lot of speaking solely based on my own experience and even the small community that I'm in, right? So opening up and learning is really important, but to me, a lot of it is normalizing the normal. And for me growing up, I was never normal. Now I understand that in many ways I am the ways I am less common or more my personality, which obviously results from my childhood but is not a disability. So that's what a lot of it comes down to. So bring that subject matter expertise into your company to really start these conversations around disability because they're actually in your company. They just might not want to be the example.

MARY:

I'm also like Jessie. There was no ally growing up, no google, no Facebook, none of that. We have landlines, I'm just that old. But disability has never been normal. And I was around other disabled kids and I didn't wanna be because I was told growing up that the non-disabled kids were the normal kids, the regular kids. I never wanted to associate with other disabled kids growing up even though they were around me all the time I was around them. But I was also mainstream into non-disabled classroom and I was the only physically disabled person in the classroom. And I always was the one who stuck out because I was the only one in a wheelchair. And I knew the wheelchair was different, and I sounded different. And it really, I had a lot of ableism that worked for internalized ableism. And I think about these businesses, who is running these businesses, people might, who were indoctrinated with the same ableism I was. And until we normalize disability, and I'm not saying we make disability power, but because it's not, and it doesn't have to be, but until we normalize that your coworker sitting next to you, may have a disability, and you may not know it. So all of those ableist terms that you're saying are harmful. I think once businesses understand that even though they may not think so, they probably have disabled employees. And if we're going to make an equitable space, it has to start with them.

KATRIN:

And I know we are having a very long podcast at this point, but I really think that this is something that you both touched on and also being of the generation who grew up without Google or the Internet, what are your thoughts on whether or not the advent of Google and the Internet, whether or not it's doing maybe its job in the area of having so much information available? Like you said, we can Google just about any thing now. I see a lot of different, I would call them campaigns, right, from a marketing standpoint, a lot of different campaigns on whether it's changing words or or being able to see so many different creators who do have disabilities, who are informing people. And then then we look at some of the comments, right, and there is just so much information and not all of it is well received. And then it creates, there have been certain people that it has created a space for a person with a disability to come out and be very strong and say this is what's happening and why it's so awful. What are your thoughts on how or if there should be something different in the way that the content is being put out to be more of an education for people who are unfamiliar with the disability community? Because I find that a lot of times the content that I'm getting, right, because I'm in the industry is focused on disability, the disability community in a way that is positive, education worthy and information that I would want to share. We know that that's not all that's out there. So if you could just talk a little bit about that, I don't want to take up a ton more of your time, but I think it's really important to talk about how for even the three of us who did not have, I mean, we had a phone that had a 12 foot cord on it so that we could walk around the house, we thought that was wonderful. We didn't have the internet. So talk just a little about that. Jessie, if you want to start your thoughts on whether internet has really helped or is it hurting as much? It's hard to say I think sometimes.

JESSIE:

I definitely think it's hurting as much in many ways. But I also really appreciate the access that I have to information, different points of view of some of the more obvious components. Never read the comments. Never read the comments. You're never going to be able to distinguish between the different points of view someone or the different places that people are coming from. And by places I mean like their history, their growing up, what formed their point of view. So you're not going to be able to really understand it anyway, right? So I do think it goes down to in some ways the organizations. But also, I mean look, it's a podcast that I think has a good reputation, obviously, and therefore things like this are important. Mary's podcast is important too. And that is a great way to get information in a world that could be super messy online. I do think that people who make videos like there was a campaign that was this is how I and those are people who volunteer to demonstrate and educate, like those are reliable because they're individuals telling about their personal experience and how they navigate the world. So, there are great campaigns out there. I think it is like anything, a very mixed bag. Who doesn't want to see a cat meme, a cat video? There's a lot that we use internet for that it's fairly harmless. But there's also a lot of oppression, explicit oppression, and we all know that and we've all been exposed to the news lately, so we don't have to go into that too much, but take a little bit of time to research. I mean, I'd love everyone to read peer reviewed journals who's listening, but that's what I've been doing to educate myself more. So I'd say look at the influencers that have the right reputation and are coming from their first hand experience. I was frustrated the other day on LinkedIn where I found out the disability advocate who does around accessibility and websites, who is on my feed the most, is a cisgender white male without a disability. And those are the things that, I had feelings around that. And it's not that their skills aren't extremely important, but the fact that that was what was so dominant in my feed was also important to acknowledge. So, it gets tough.

MARY:

So, I want to say that the first thing people have to understand is the difference between an influencer and advocate or activist because your disabled influencer is just like your non disabled influencer. An influencer is an influencer. Nothing wrong with being an influencer, but understand that that's who you're following. An advocate or activist is doing different kind of work than an influencer. If you really want to learn about disability rights, disability justice, seek out multi marginal disabled activists, multi marginal disabled activists because they're the ones who should be centered. And the internet is, it's out there. There's so much stuff. There's a plethora of information. Just know where you're getting your information from. And like Jessie said, don't read the comments. And also, not all disabled people know about disability rights or know that they're being ableist. You know, you can't just say, I'm going to follow three disabled individuals and think that they're advocates or activists. They don't have to be. And you can't say, I'm going to follow a black individual because they're going to teach me about racism. No, that's not. Know who you're following. Consider a source. And remember that there's nuance.

KATRIN:

Yeah. This has been such a great conversation. I feel like we could probably speak for hours, but let's get ready to sign off, and I just want to give you both the opportunity, if there's anything else that you'd like to share, please let us know now. Jessie, is there anything else you'd like for us to share today?

JESSIE:

Just want to double down on we're here. We're a notable part of the population. And including people with disabilities, needing to step back, and just look at the lenses that we're using is my big ask. I do like to plug a show. No show is perfect. I mean, it's TV. It's there to get ratings. But as far as exposure to some of the tropes, I like people watching the show Speechless. In the United States, It's on Hulu right now. And it's a sitcom. It's funny. But above all else, that exposure to tropes is going to be helpful because you'll understand language like, what is inspiration for. Things like that will be very helpful.

MARY:

I wanna add to what Jessie said about Speechless, like she said, Mel, so is perfect, but I will say that the main character, while the actor is disabled and does have cerebral palsy, he is not non-speaking and yet his character was non-speaking. So just take that into consideration. The actor spoke, he speaks. He may take a little time to speak and have impaired speech, but he does speak. So it's interesting to think about whether producers did not want to show that aspect. I want to see more people with impaired speech on TV. I do want to say what goes out there, we're waiting for you all to meet us at our intersection, so please do so. Disability intersects at every identity. So please meet us at our intersection so that we can move forward together and keep collective liberation.

KATRIN:

Great advice from both of you. Thank you so much. All of the resources that we mentioned today in this conversation, they will be listed in the show notes below. Jessie, Mary, thank you so much for your time today. I look forward to following up with both of you soon.

JESSIE:

Thank you so much.

MARY:

Thank you. Empire State of Rights has been brought to you by Disability Rights New York, your source for disability rights and advocacy. If you enjoyed our program, make sure to subscribe, like, and share this post. The video for this episode is available on our YouTube channel with closed captioning and ASL interpretation. If there is a subject you would like us to discuss, please email PODCAST@DRNY.ORG or comment below. For more Empire State of Rights, follow us on Apple Podcasts, Spotify and YouTube.

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Katrin Haldeman

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