The Intersection of being Black, Jewish, and Disabled - Part 2

Mary and Love continue their conversation as they dive into why Love created "Ableism Fridays," being an educator, the pandemic, and mental health.

Love is a disabled Black and Jewish Higher Education administrator and educator. Love has led numerous trainings on creating inclusive communities and addressing internal and external biases.
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Love currently runs an Instagram account that focuses on issues facing the Black, Jewish, and disability communities at large. She is passionate about learning and justice. She has lived all over the United States and currently resides in New England.

You can follow Love on social media here.
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The Politics of Disability was named Best Interview Podcast at the Astoria Film Festival in both October 2022 and again in June 2023.

Transcript

[music playing as Mary speaks]

Mary: Hello everyone, and welcome to season two of The Politics of Disability. My name is Mary Fashik. I am the founder Upgrade Accessibility and your host. The road ahead is still a bumpy one and in fact, may be a bumpier one.  So, buckle up extra tight and let’s go.

[music playing]

Mary: Welcome back. Ready to find out where this conversation goes? Good. Then buckle up and let’s go.

Mary: You started something on Instagram called “Ableism Fridays.” What made you do it? What is it about?

Love: In 2020, I was ending the year, and I really thought, you know, “I feel like I have to focus on something for the new year.” I'm someone who really, in my professional role, I consider myself an educator. That's my career, my job. But in my Instagram role, I don't love the title of “educator.” Like, I don't feel like I have all the knowledge of something.

There are things that I definitely know about, and there are things that I know about in my career that I have professional knowledge on. But a lot of what I do on Instagram is like learning new things and discovering new things. And I wanted to have conversations about, like, some of the things that I was discovering. And so, in 2021, I dedicated my year to learning more about disabilities, disabilities that sometimes I have, sometimes I don't–learning what other people's experiences were. And one of the things that people always say is that they love to hear from firsthand accounts of things, like. And no one necessarily wants to say, like, “Okay, well, these are all the symptoms and this is who usually has it and blah, blah, blah.” Because we know that in our society, like a lot of people of color, a lot of people of minoritized identities are often overlooked.

And so, I was like, “Let me do some background research and try to curate some content and some stories from various people who experience different disabilities.” And so most weeks on Friday… I'm also disabled, so sometimes that didn't work out quite like I might have wanted it to. And for me, that was a learning curve to know that like I'm not a machine, like I have two jobs and this is not my job to curate content for everyone else.

But I would post a question. I would post some cool stuff that I found on typically a specific disability and highlight it on Ableism Friday. And so, what I did with that is I would try to find as many different firsthand accounts on Instagram by searching hashtags, by looking through pages, going kind of like down a…people describe it as like a Wikipedia rabbit hole…and like looking for things, looking for different content creators, looking for people, just telling the stories of their experiences with their disability.

And it was really cool what I learned. I think the thing that was most meaningful, impactful, interesting to me, was when I did a week on diabetes. When I was in high school, I dated someone that had diabetes. And so I kind of thought I knew, like, a lot about it. And I realized just how little I knew by going in and actually doing research.

And sometimes I would ask questions of my audience and be like, “Hey, how much do you know about this topic?” Sometimes we think that we know when and we understand what someone that has a certain disability is going through. And we really have no idea because, mostly, what we know is like rumors or what one person's experience is.

And so, like, I sort of always thought that, like, having diabetes was annoying, but I didn't know that it was like such a big deal. And then in looking at that, I was like, “Oh, my goodness. Like all of these times, my partner could have died, and I just never even knew.” And I think that that was really shocking to me because I, again, like I said at the beginning of this episode, like I consider myself like someone who is thoughtful and someone who cares about justice and tries to know things.

But it's like we all have bli–...We all have things that we don't know about. See, I almost used an ableist term. I had to stop myself. We all have these things that we do that are just in culture that we just push forward without even really thinking about it or considering. And to me, if we're not actively interrogating this, if we're not actively trying to be conscious of our language, if we are not trying to learn more when we're able to, when we can, like, we will forever stay in this place where we are not being helpful to one another and we are not truly living in the best community that we can be.

And so, Ableism Friday is my answer of like, “Let's be in community together. Like, let's learn together and let's figure out how we can all do even just a fraction better for each other and for ourselves.”

Mary: And I beg to differ. I think you are an educator. I think an educator has experience and expertise and shares that with others. And I think that’s exactly what you’re doing. So, you are an educator. In my eyes, you’re definitely an educator. And you’ve taught me so much. And there are times where I listen to you talk, and, you know, I think I know things. And then I listen to you. And I’m like, “Oh okay, I knew nothing, okay!” [laughs] But you are. You’re an educator. And you’re an amazing one at that. 

We’ve been hearing a lot about mental health the past two years, but especially lately. But it’s been about non-disabled people’s mental health. And I feel like our community is once again being ignored. So how has society’s attitude surrounding COVID affected you and your mental health?

Love: I have a major depressive disorder, among some other things. And I have had that since I was a child. And so, depression and suicidality is something that's been very much been a part of my life for my entire life. I don't know what it is like to wake up and be happy. And that sounds weird to say, like, because I know that that is not everyone’s reality, but that's just kind of like where I'm at and what has been my reality.

And I think the first year of the pandemic, I honestly was fine. Like 2020 was actually like a pretty decent mental health year. You know, I was concerned about COVID. I was, like, not seeing anyone. I felt like I was on lockdown. There was a lot of things happening in the social and political climate. But I felt like, “I'm good and I'm inside and like, you know, I can handle being inside.”

And I, luckily, like had employment and was able to not have to go out and I felt okay. In my full-time job, I work at a university. And so, I work with a lot of students that really their main concern was struggling with mental health. Part of why I think that society has focused so much on non-disabled folks’ mental health is because that we don't know how to have individual conversations.

And that is something that I very much feel is developed in the youth and especially in college-age and high school-age students. I was fine because I have a lot of individual conversations. I made connections online and so like if I needed to talk to someone online and I was up late, I knew someone in California or I knew someone in Israel or I knew someone in Australia.

And like, you know, we could have an individual conversation about whatever and I could get in my little, like, social-ness. And I think that's the reality a little bit for a lot of disabled folks, where we have to create individual connections with people. And a lot of times in these virtual settings, because we need to find someone who has the same condition as us. Or we're not able to go out in the same way and socialize at a bar or club or etc., in a large group, like some other people are able to do.

And that, I think, was something that was shocking for a lot of people who are only used to getting any kind of human interaction in this really large group or in some sort of group that doesn't allow for a one-on-one conversation like we're having. I think now, I'm in a very bad place, because of two plus years of hearing that, like, my life and the lives of my friends don't matter.

And while, I think, most of us aren't naive to think that everyone cared about us and, you know, all of this kind of stuff, before at least there was some sort of pretending. [laughs]

There was some level of pretending. Some of us got a little bit more access than we were able to have before. I never had the opportunity to work from home before. And so, a lot of my other problems that happened, because I was able to work from home for a year, went away. And so that helped my mental health in some kind of ways.

As a woman of color, I didn't have a lot of the micro and macro aggressions that happen at work in more common or social spaces. And so, my brain could rest a little bit easier from having that sort of, like, anxiety and those triggers. But now, a lot of us have lost the ability to stay home and also be able to live or have money.

A lot of that accessibility has gone away. So even having accessible, you know, access to religious services or having access to town meetings or, you know, whatever, whatever people want to do, has gone away. There's been less people who are, like, driving to do groceries and do all this kind of stuff. Because before, when that services weren't necessarily needed as much, maybe we could get in to have our groceries delivered or have something.

But now that other people have done it, like, a lot of people who are non-disabled have taken up this and are taking up a lot of the space and a lot of the resources to use some of these things that really are needed in the disability community. And so, I think it's really, really hard. I think the other thing that is really, really hard is: I don't know what it is… Like, I think the way I described it to my partner is like “Now everyone is Florida.” [laughs] Like, I live in New England and for the most part, New England had been pretty good about it. Our governors and people had been going on and saying ridiculous things. We had had some mask mandates in place. Working from home options were available. And that is a big privilege based on where I lived in the United States.

Like that is not your case, Mary. That's not the case for a lot of people. But now, I think what is more concerning to me or what is extra scary is like now none of that matters. Now, in Virginia, they are saying that no school system can have any students in their school wear masks. And there's just all of these other problems that are happening and they're becoming normalized.

And so now where it's like, I felt like the nation was looking at places like Georgia, where my mom lives, as like, “Oh, they're being weird and that's wrong. And that's a political problem. And once that political problem gets out, then it'll be fine.” Now, the places that were supposed to be reasonable and are saying like “we're following science,” are just saying the same things as them.

You know, my campus is having large spread and an increase in COVID-positive results when my community is actually going down. But my actual workplace is going up. And yet, I still get notifications that say, “Hey, we don't have any indication of a wide community spread of COVID.” And I'm like, “That's literally not true. Like, the numbers that you're seeing are showing that you're indicating that there's widespread.” And I think after being gaslit for two years, I think those of us, like, at some point we have to reach our breaking point.

And I think I was probably one of the people that was luckier, maybe, you know, that took longer to reach their breaking point. And now I just feel like the entire community is there. No matter where you are, like, no person that is disabled that I've talked to is not there. And I think the sad part is no one cares.

They're talking about students needing to be in the classroom. But no one has cared that, you know, in some ways, the classroom became more accessible for some students. And I do recognize and realize that it also did become unaccessible for some students because not everyone learns in the same way. Some people need in-person interaction and whatever. But I think the positive about the pandemic is there was some “positive.” There's no positive, really, but if there was any, that there’s some level of choice in recognizing that maybe giving folks choices will be better. Maybe giving folks a choice of working from home, or working from the office, can allow people to pick an environment in which they can perform their best. We've gone from people having no choice, all work at home, to no choice, all work in the office. And the reality is, if we are going to learn and if all of these, like, over 1 million…I don't even know what the global numbers are, but the United States numbers are very, very close to a million…folks were to die… Like, I don't personally believe that anyone should die for a cause or for learning.

Like, that's not my whole thing. But if, if people have already died and we also don't learn anything, then that is…that's...I'm speechless. I don't even have any words for that.

Mary: I always knew people didn’t want me to live. But knowing that and seeing that in front of your face are two completely different things. I always knew from my personal experience that people did not want me to occupy space, that my presence was very bothersome to them. I’ve always known that, but to see it so vividly, it takes a toll. And yes, I also reached my breaking point. After almost two years. I had a complete meltdown. And I had it in a very unfortunate way. And I had it in a space where there was no understanding as to why I had that reaction and that meltdown. And I have to understand that. And I think you can agree with me, in a professional setting, you’re not allowed to be unprofessional. You’re not allowed to have a mental health crisis. You have to remain “professional.” Those things have to happen on your own time. But they don’t always happen on your own time. They just tend to happen. And it really did take a toll on me. And I’m still, a month later, my wheels are still spinning from it. Like you said, it’s just been incredibly, incredibly difficult to navigate this. What is a message that you have for the non-disabled community, and anything else that you would like to add before we wrap up today?

Love: If I were to be succinct, which I'm not wonderful at…But one of the things that I would say to the non-disabled community is that it may seem like what we think is correct or makes sense or isn't as harmful, but you have to reconsider that. And I'm going to give an example of something that I'm currently trying to, like, work through.

I would like to believe that I am a very, like, intellectual, intelligent person who can speak to things and is a good researcher and can curate some things. It's something I'm proud about. If someone told me that I was ugly, I wouldn't really care, because I don't care about looks. But I care about my intellect. And something that has been really difficult for me to understand is that that–caring about my intellect–is rooted in ableism.

There is nothing good, inherently, about being intelligent. It is just a characteristic that we have. And a lot of the characteristics and things that we use when we're talking and we're honestly trying to be mean or frustrated or we’re annoyed, are put downs of people and their intelligence–whether you say someone’s stupid or someone's an idiot or whatever. And I use these things too. And I've been really trying to think about a way to express my disappointment in others, which is really what that is. It's like “I'm disappointed in how some people have handled the pandemic,” for instance. Like, and I'm disappointed because I don't believe that their actions are representative of, like, how I think that they are intrinsically as a person.

And I'm using that by saying like, “Oh, well they're being dumb.” Or whatever. Like, I'm just using some language that is not appropriate and that is really inherently ableist. And, one of the things that I'm really working on, is when I'm talking is: trying to get my point across in the most simple way. Because I think that one of the reasons why a lot of problems continue or why people get frustrated is because information isn’t accessible. And accessibility is not just fonts on a screen or it's not just captions or, you know, it's not just video or audio or that kind of thing, but it's also like, “How are you literally sharing your ideas?”

Are things behind a paywall, for instance? Like, are you using language that is understandable for everyone? To be an advocate and to understand and to try to do better by people, you don't have to go to college to do that. You don't have to finish high school to do that. You don't have to do any of that. You just have to know something about living in community.

And regardless of your intellectual ability, everyone lives in community. And so for me, I have to uncouple myself from my pride in my intelligence and the way that I express myself. And I really need to say, like, “Hey, what am I trying to do moving forward?” I say this knowing that I don't do all of those things. That's a goal and that's something that I've been thinking about.

But I guess my call-to-action for nondisabled folks–and honestly for also disabled folks...because we all do this too, for a variety of different things, whether it's our race, whether it's our sexual orientation, whether it's our gender identity, whatever it might be. Like we all also have biases…is to just try to actually think about some of the ways that we might have those biases and just figure out a plan for yourself to break them down.

You know, it doesn't have to be something that's really sophisticated. It could just be like, “Okay, I'm going to try to not say someone is an ‘idiot’ this week.” Like, and that could be it, you know, it's just you got to start somewhere. But if we all start somewhere, then the world will be that much better.

Mary: And that's so hard to do. I think one, a hardest things to do is to shift language and shift the thought behind that language. Like, why am I not saying this word anymore? Why can I not say someone is “stupid,” or whatever? Because there is no way to not be ableist when you’re insulting someone's intelligence.

Love, I want to thank you so so much for taking time out of your very busy schedule to do this with me. It was amazing, And just thank you for being here today. 

Love: Thanks Mary.

[music playing while Mary speaks] Thank you for joining me for this episode of the Politics of Disability Podcast. As you navigate your journey, remember: disability is political; disability is messy; disability is not palatable--nor does it have to be.

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