Episode 11: Lachi

Everything You Know About Disability Is Wrong Podcast

January 4, 2024

Episode 11 Show Notes

In today’s episode, our hosts Erin and Lily are joined by award-winning recording artist, YouTuber and disability advocate Lachi. Her music has been featured on radio, TV and film and she founded Recording Artist and Music Professionals With Disabilities (RAMPD). She works with organizations (including the Grammy’s) as a board member addressing DEI (Diversity, Equity, and Inclusion) work.

To begin, Lachi shares that starting her YouTube series was the first step in her journey of celebrating her disability, pride, identity and culture. Today, she uses everything from her music to her clothes to represent this pride. In 2017, she received a diagnosis that she would lose her vision completely. She recognizes that her disability and identity are not her only defining qualities and hopes that she can be celebrated for the amazing things she does outside of those labels. Lachi shares what people most often get wrong about her and about progressive disability. She also explains her perspective about ableism and how it intersects with class, gender, disability and more.

Lachi has found that for people with disabilities, shame is internalized ableism. The real way to break down this shame is to start showcasing disability pride, creative thinking, innovativeness, problem-solving skills and more. As more people share about their own disabilities, the more willing people with mental and physical disabilities will allow themselves to seek treatment that will better their lives. Language and word choice is also a huge factor in shaping empowerment.

Before wrapping up, she shares her inspiration from Judy Heumann. Finally, Lachi highlights her new book deal with Penguin Publishing that will showcase disability narratives within pop culture today.

Learn more about Lachi.

Transcript

Lily Newton:

Hey listeners, welcome to another episode of Everything You Know About Disability is Wrong.

Erin Hawley:

A podcast for disabled people and by disabled people. Today on the podcast we have award winning recording and performing artist Lachi. And she’s also a YouTuber and disability advocate.

Lily Newton:

Lachi's music has been featured on radio, TV, in film, and she founded Recording Artists and Music Professionals with Disabilities or RAMPD, which is the coolest acronym ever. And she works with organizations as board members and doing DEIA work, and she's even a board member for the Grammys.

Erin Hawley:

And we want to thank Lachi for bringing to our attention the need for audio descriptions for our videos at the start of every episode.

Lily Newton:

Yes, as always, accessibility is an ongoing effort, so we're so grateful to learn and be able to add something new to our podcast to make it even more accessible. We've already finished production for the episodes recorded in season two, so this will be added to Lachi's episode. And then listeners and viewers, you can expect every episode of season three to have these audio descriptions of the video you're seeing.

Erin Hawley:

Yep. So I’ll start.

Lily Newton:

You want to get us started?

Erin Hawley:

Okay. I'll start us with my audio description. I'm Erin and a white presenting woman with strawberry, blonde hair, blue eyes, and I'm wearing a white long sleeve.

Lily Newton:

Thanks, Erin. I'm Lily. I'm a white presenting woman with green eyes and shoulder length brown hair. I'm wearing a black turtleneck currently and I will be wearing a black turtleneck in the recording. In the recording, Erin's also wearing an orange sweater and we are joined by Lachi, who is a black woman with braids with her hair pulled back. She's wearing a pink shirt and a pink flower is pinned in her hair and on screen you also see the title of our podcast, which is Everything you know about Disability is Wrong.

Erin Hawley:

And we're really excited to get into it. So let's go. 

[Music: Oh my goodness. You are such an inspiration. Wow, you really are. You're so strong. Can I pet your service dog? 1, 2, 3, let's go. We're artists, parents, teachers, good guys, bad guys, students, leaders, I’m not your inspiration, yeah, I’m fully who I am. Got my own expectations that don't fit into your plans. I'm not your sad story. So I wrote it in this song. Everything you know about disability is wrong! Everything, yeah, everything you know about disability is wrong!]

Lily Newton:

We are so happy to have you on the podcast, Lachi. Thank you so much for being here.

Lachi:

Really excited to be here. Cannot wait to get into everything. Thank you for having me.

Lily Newton:

So as Erin mentioned, she's so excited to have you as a guest and introduced me to your work and I'm so grateful that she did. I think you're so cool and I'm really excited for today. My first kind of intro getting to know you was I watched your YouTube series, Offbeat: Going Blind and Staying Fabulous, which is a phenomenal YouTube series. Listeners, check it out. It's really, really great. So can you tell us a little bit about that series and what made you decide to document your experience going from low vision to total blindness?

Lachi:

Yeah, I mean that was really sort of the beginning of my journey of celebrating my disability, pride, identity and culture. And today I use everything from my music to my storytelling to my fashion to advocate for disability, identity, pride, and culture. But I think it was about 2017 was when I got the diagnosis that I was going to lose my vision completely. And by that time in my life and career, I was in a place where I was like, you know, how do I turn this into money? How do I add this to my business proposal? So I was like, let me start by introducing to the world that I am going to be losing my vision. For a while I'd been navigating the music industry sighted-passing, I guess is the best way to say that. And I was finding success, but at this point I had to get in front of this diagnosis and not let it take me out.

So I said, I am going to draft up a bucket list of a bunch of people that I want to meet and a bunch of things that I want to do and we're just going to go do them. And honestly, I had this sort of negative correlation of as my site depleted, my quality of life increased and it just really got me wanting to mountain climb, wanting to scale buildings, wanting to jump out of airplanes, wanting to meet other leaders and famous people in my space. And that was really the kickoff point for me saying, listen, we're going to grab life by the proverbial balls and we're going to do this whole thing all the way.

Lily Newton:

Snaps for that. I love that attitude and I think it is exactly what we try to embody here on Everything You Know about Disability is Wrong because I think that so much of what mainstream media talks about disability is this sad experience and it's like, no, this is awesome. These are our identities and we're going to make the most of them.

Erin Hawley:

The first video I saw on your channel was when you went skydiving. And to me, I was like, just as a person, that is terrifying to me. That is so cool. And I love how you bring in your disability in your videos without making it about disability. It says it shows that we are just people who do things and our disability is empowering, but just a part of who we're, and I love that.

Lachi:

Yeah, I mean just like I'm a woman, just like I'm a person of color, just like I am an American, just like I'm a daughter of immigrants, I also have a disability, I actually have multiple disabilities and I mean everybody's got something. And so I believe that the problem is that folks are afraid to celebrate all parts of their identity and there are certain parts of our identities that we're told to feel ashamed about and that we're told to hide. And so it's one of the reasons I lean in to my disability identity and talk about it, but at the end of the day, I'm just as proud of that part of myself as I am of the music part of myself as I am of the woman part of myself as I am of the black part of myself. And I feel like the fact that I'm blind and the fact that I'm a woman or black or whatever is not what makes me amazing. And it's not like, oh my God, she got out of bed or she brushed her teeth and she's blind. That's so amazing. It's amazing that I jumped out of a plane! That's what, and so that's the kind of stuff I want to celebrate. So I'm really excited that that's how it was received. [laughing]

Lily Newton:

Yes, absolutely. When Jennifer Msumba, who was one of our season one guests and she wrote our theme song when we were talking about writing the theme song, that was one thing she talked about. She was like, I don't want to be called inspiring for going to the grocery store. I want to be inspiring for the actual inspiring stuff I do. Which I think that – yes, I love that you celebrate that and I think that just your outlook is so wonderful and I'm just in awe of the way that you celebrate life. I think that's exciting. And I think that I love everything you said about identity. I think you're exactly right – that there are parts of ourselves that we're told you should dial that down. And especially you mentioned being sighted-passing as the phrasing. I've spent most of my life as neurotypical passing. And there is that feeling of, well, this is just as much my identity as every other part of me, so I'm not actually going to try to pass or hide this. But also what you said, Erin, it's not my only defining quality. So I think that's really cool. Obviously our podcast is called Everything About You Know About Disability is Wrong, so we like to kind of ask what do people get wrong about you? And specifically I'm really interested in your thoughts on what people get wrong about progressive disability and finding out something that you're to go from low vision to fully losing your sight. What are some things for our listeners that they might get wrong about that kind of diagnosis and what you go through?

Lachi:

Firstly, in talking about progressive disability, so we are ever changing beings, right? You go from baby to toddler to adult, and that's just traumatizing in and of itself. You go from possibly single to married, heck, you go from straight to gay.

You might go from sighted to not sighted as just a natural part of your life hearing to not hearing, walking to non-ambulatory, and you may even go from neurotypical to neurodivergent due to certain catalysts in your life. And everyone goes through growth. I don't see it as going backwards. I actually just see it as part of growth. And so this whole idea of like, oh my God, I'm losing part of me. You're actually growing and it's fine. Everyone's growing in different ways. Another thing that people get wrong about so many people, so first of all, I don't know if this is the right podcast to talk about this, so I'm going to just say this very briefly, but disabled people have sex. Okay?

Lily Newton:

Oh yeah, this is the right podcast! Oh, we love to talk about these things. We are real humans!

Lachi:

Your girl gets it in. If you don't think that disabled people have sex, I must not be disabled. And then also just this idea of boxes that we place ourselves in. The term I believe is called heuristics. So heuristics is when we make quick categorizations of things so that we can quickly acclimate. You walk into a room, you think door wall, don't walk into a chair and you put things in categories. You think older person, you think younger person, but that's why we have those heuristics so that we can quickly be able to navigate things, figure out our self-defenses and be safe and whatnot. But we often take this to the extreme of a blind person cannot see, a deaf person cannot hear, but it turns out that most blind people can see. Most blind people can see! Turns out 85% of blind people can see, and I'm one of them, I'm only partially blind.

Most deaf folks are hard of hearing partially deaf, et cetera, et cetera. There are a lot of folks in wheelchairs that are also ambulatory. And so these boxes that we put ourselves in make it very difficult for people who need access to get it due to the stigmas of those boxes. And I think that the best example is using a cane. So a lot of blind people don't want to use their cane, and frankly, a lot of folks who have mobility differences don't want to use their canes as well because of the stigma of weakness that it brings because of the stigma of needing help and assistance that it brings. But at the end of the day, the truth of the matter is, is that your stick, your cane, it actually makes the person independent. It does the opposite of what people think it does.

It doesn't make you weaker, it actually makes you more independent. It also alerts people to the fact that you have a disability, so you don't have to be all awkward in trying to hide it. That's number two. And number three, people with disabilities have to go through so much erasure that I just want to show my stick! Boom! I'm disabled! And so I think that a lot of folks who are legally blind or visually impaired or have low vision that need to use their cane but aren't using it, and they're just kind of going through life to try to figure things out. It's not safe for them, but because of stigmas, this is why they're doing it. And we would've so many more people using the cane if it weren't for stigmas.

Lily Newton:

Yes. Wow. To all of that! I mean, just such a phenomenal group of info for our listeners to hear. I think that that really is some plain old, “everything people know about disability is wrong.” People really do think that, and I especially think that spectrums get completely missed. The nuance of many different spectrums that exist in disability get missed. And I think you're so correct there with that stigma is the thing that's stopping people from using things that would actually give them independence. I think that is so amazing.

Lachi:

Yeah, because you know what? I think for a lot of folks, it's not the fact that they have the disability that makes them have social issues or feel depressed. Honestly, it's the way folks treat them and it's the way folks view a part of their identity that makes folks depressed or have social issues when it comes to disability.

Erin Hawley:

And what people fail to realize is that when you become disabled with later in life, you often bring along the ableism that you learned through your entire life. And then to become disabled is scary in your mind. And I feel like you get a lot of support in the disability community to lessen that. And we should definitely, I've been disabled my whole life, so it's very different. But as a community, we should bring in newly disabled people and kind of help them unlearn ableism that they brought with them, which hard, but it's necessary.

Lachi:

It's definitely necessary. A lot of the time ableism is sort of synonymous to trauma. And so a great example is when folks are trying to showcase to people the experience of being blind, they'll have people put on a blindfold or something and then try to eat dinner or try to walk down the street. So I recognize that that would help people be empathetic to the blind experience. But the issue is that it just only introduces them to the trauma of just going blind and trying to navigate the world, not realizing that most folks naturally go into blindness or are born blind, so this is all they know. And so it's not traumatic to walk down the street or eat a meal, but this is what we're presenting to folks. Also, we need to recognize that ableism is much larger than just disability. Ableism intersects with so many different things.

Lachi:

It intersects with gender, it intersects with sexual preference, it intersects with size, it intersects with class. So like a cis straight white male with an amputee have a very different life experience than a transgender woman of color who's also an amputee. While they'll both need the same, I guess, ramp to try to get into the party, it's far less likely that the trans woman of color who's an amputee will even get an invite. So we have to look at these sort of juxtaposed systems of oppression that also affect disability and how they amplify ableism and how people can be more ableist towards people that are multi marginalized than they are towards people who are not multi marginalized.

Lily Newton:

Yes, absolutely. Such a crucial point that intersectionality is so important. I have a friend who is in her kind of discovery of her own neurodivergence, and she's been having to do what we're talking about on learning a lot of ableism, and we were just having a conversation about how ableism is the backbone of many other -isms and -ogynies and just marginalizations – this idea of how productive you can be or how typical you are. It causes a lot of hatred in other groups as well. And I think that that is just so important to point out and see that we have to consider many identities. And it goes back to the beginning of this podcast us talking about how disability is just one part of who we are. Exactly. It's also one part of our intersectionality. We all have many different intersectional identities, and I know I often talk about how my queer identity and autistic identity are so intertwined they could never be separated, and I think that that is just a really important part to talk about. So thank you for bringing that up.

Lachi:

Exactly, exactly. Of course, of course.

Lily Newton:

So I want to talk a little bit about your specific work in DEI work in the music industry, so in one of my favorite interviews of you, you're talking about the emergence of disability culture through music and how we see culture emerge through art forms and how you want to see that in the music industry, especially given the work that you have done with recording artists and music professionals with disabilities. For our listeners who are unfamiliar, can you just tell us a little bit about RAMPD and how it got started?

Lachi:

Sure. So RAMPD started actually in 2021 as an acronym, which I think is our biggest achievement because that's the best acronym. But we worked side by side with the Recording Academy to begin lessening the fact that there was just not a lot of support for artists and professionals in the music industry with disabilities, accessibility needs, et cetera, et cetera. For me personally, I remember going up to different firms and entities and organizations and asking them what they were doing for disability inclusion and accessibility, and they were just like, I don't know, you tell us. So I said, okay. And I kept getting things like, oh, it's you and Stevie Wonder. And so I was like, there's no way. That's it. One of the things somebody had said to me was, you're the first musician or artist I've ever met with a disability apart from knowing Stevie Wonder. And my response was, no, I'm not. I'm just the first one out about it.

And so I wanted to make sure that we build this coalition, or at least this network of recording artists and industry professionals who identify as neurodivergent having a mobile physical sensory disability, chronic conditions, et cetera, that work in the music industry. To answer that question that they consistently had of, well, who would we be doing this for? Where are these disabled musicians? We don't have anyone to service, but it's just because of the fact that folks hadn't come together to build this coalition. So RAMPD came about. We penned our whole thing down in the beginning of 2022. That was when we became official. I founded it. I was joined by Gaelynn Lea and a few others, Stephen Letnes and a few others to really get this thing off the ground. Our first partner was the Grammy Awards, so that's how we kind of soared very quickly.

Our first partner was this global mammoth, but that was just because I was on the inside at the Grammys. It was very easy to turn that into a relationship. However, we got a ton of press, everything from Billboard to Forbes to Hollywood Reporter and New York Times. And then because of all that press and because of that sort of really high level forward facing initial buzz, and because of the really great music professionals and artists that we had right on the onset, people were Googling us, people were coming in, we got overwhelmed very quickly, but we were able to really become a thing. And now a year in what Ramped is as we are a global, are a platform that connects the music and events and entertainment industry to a global network of recording artists and music professionals with Big D disability, deafness, neurodivergence, all of the others.

And we do everything from offering job opportunity visibility and connectivity to our professional membership, to our Affinity network, but also forward facing. We offer inclusive programming, consultation and disability etiquette and accessibility and awareness to the music industry. So we're doing a lot. We've also worked with Netflix, we've done internal conversations with places like Sony Pictures Entertainment. We have done a lot of work with the National Independent Venue Association. We're talking a lot to Music Forward, which is an arm of Live Nation. So we are doing a ton, ton ton, and we have big dreams and big plans, and we're only a year old. We're not up to two years old. I don't know how many two-year-olds have done as much as we have, but we're ready because at the end of the day, I firmly and truly believe that it will be disability culture that explodes the thing, right?

Look, disability rights and disability policy, that's great. It's great at moving the needle and it's great at finger wagging people into doing things, but I don't want finger wags, I want cultural movements. It was hip hop that introduced everyone to black culture globally. It was country music that introduced everyone to rural culture globally. I mean, I was just out in Europe and they were listening to fricking country music. I was like, y'all are listening to country music out here. And that's how they're getting introduced to our culture. So I want to use music to introduce the world to disability culture, and that's what we're have to do.

Lily Newton:

Taking everything in me not to just scream and cheer into this mic! Oh my goodness, incredible! There are so many incredible things about what you just said! I have to point out that the thing that I think is so incredible, going back, you said that you got in with the Grammys quite in your infancy stage at RAMPD because you were already in the room. And I think that needs a second of applause because that is how we change this world, is that when we end up in rooms where it happens, instead of saying, oh, I'm lucky to be here as a disabled person, we say, oh, let's get some more people in here.

Lachi:

Oh you better – see, this is why you can't be inviting Lachi anywhere because once you invite me, you're inviting my whole family. Everybody's coming.

Lily Newton:

Yes!

Lachi:

We're all, and even if you just give us one chair, there's going to be 80 of us sitting in that chair. Just sitting on each other's laps, because we're all going to be there.

Lily Newton:

Heck yes. And I think that is a great point about how disability culture is, how we really get people to understand our movement because interconnectedness and to be cheesy and quote your song, but lifting each other up is how we do this. I mean, in the disability community, we're good at that. We're good at bringing each other along and knowing that I'm not going to think that I'm the person breaking the glass ceiling and leave behind the people that helped me get there. I think that that is so incredible and just congratulations on how successful RAMPD has been, and thank you for using the seat you had at the table to bring more of us in.

Lachi:

Amen. Amen. I mean, it's passion and purpose. At the end of the day, I love what I do. I don't wake up and go like, oh my God, this sucks. I got to do this again. I love what I'm doing and I think it is because I recognize the need and I have the means. So why not put it together and allow everybody else to win and leave not only that legacy behind, but it's a legacy builder and to be able to make those connections. I remember earlier on, so one of my greatest mentors was and is still Judy Heumann, and I had the pleasure of knowing her and being one of her 2:00 AM phone calls every once in a while, and she would call me and give me advice and say, stand up for what's right and stop backing down and stop doing this. And I would say, “stop calling me at 2:00 AM!” [laughing]

But honestly, it was through her that I learned that connectivity is key. Connecting people is the actual activism, it's the actual work because when we look at the word marginalized and we look at the word exclusion, it is that there is a center and we are all on the rim and we are not connected. We are the ones not connected. And so it's this idea of breaking down these silos and breaking down this sentiment of silo. There's a sentiment that goes around in any historically excluded community. It started with women, right? With the whole, there can only be one woman in the CEO table. That whole thing and starting to realize, well, why is that? Why can't we just have a whole circle of women? That was the beginning of the breaking down of the whole patriarchy, which we're not here to get into all of that. But the point is, is that this whole idea that there's only one opportunity for this one disabled person, so everybody's got to go grab it and try to pull down the others and the whole crabs in a bucket theory, the truth of the matter is there are as many opportunities as there are ideas, and it's all about figuring out how you can get what you need and then pulling others up so that they can help progress this thing that you did.

Judy gave me a lot of opportunities and I was actually able to turn around and give her opportunities. That's what this is. You don't want to just be the only one that comes up and then you're fending for yourself and you have no community. You don't have an army when you're by yourself. If you can lift everybody else up and you make that army, then guess what? Now you have people that can help you be a part of their army. You start getting opportunities from them, and it's the seesaw of awkwardness. That is what lifting each other up is.

Erin Hawley:

Totally. And read saw that in the sit-ins and the protests during the ADA passage, how everyone came together as a community to make this big change. It wasn't about individualism, it was about being together. I think today with not to be negative, but today there's social media and there's a lot of individualism. I see a lot of focus on me, focus on what I'm doing, but what you're doing is building communities and that's what we need. We have to do that to make change.

Lachi:

Well, one thing I will say is that social media is already just in and of itself a very focus on me type of entity, whether it's in disability, whether it's in whatever. It's a very, here is my platform, everybody listen to it. I have to say, don't know why I went English right there, but it's alright. I feel that social media is a tough one because at the end of the day, social media is such a great vehicle for community and for building change and for building vehicles. And we see some of sometimes, but I think a lot of it is honestly the system and the way the institutions are built really try to make everyone want to compete. And the minute folks start to collaborate, it's so easy to just go beyond the system very quickly. The minute your eyes kind of go, oh, I can actually co-create with these people and make something larger than the limited system that I've been navigating in and begin to have that, what's the word? The opposite of scarcity, abundance mindset. There it is. Begin to have that abundance mindset and recognize that there is unlimited opportunity, unlimited funding, unlimited love, that we begin to really start making change.

Lily Newton:

Yes, absolutely. And Erin, I'm glad you brought up the point about the sit-ins and we're talking about communities. When you build a beautiful community of your own kind of community members, then full on communities can show up for one another. I think about the section 504 sit-ins and how the Black Panthers showed up with medication and food and things that allowed the disability rights activists to continue and make the laws that shape disability society today. So I think that that is so crucial, this showing up for one another. And you bring up mother Judy Heumann who truly I think embodied that communal sense and that idea you said of there's as many opportunities as there are ideas. I think that that is so true, and we see that Erin and I with our work at Easterseals, there's Easterseals all over the country and we see this kind of, when we come together, these networks are incredible.

Lily Newton:

And I mean just even the people that we've met through the Disability Film Challenge, which is Easterseals Southern California, and I feel like each of our affiliates have different programs that they're working on, and you just start to realize, wow, this is a community. And going back, you said the thing about with ramped how you wanted to create the groups that people thought didn't exist, like, well, who is this for? You wanted to show this is who it's for. I mean, one in four people are disabled, but that is a thing that you hear often of like, well, why would I do this? Who's the consumer audience of this? And I think that that is really important to bring up that it's important for us to be communities to mobilize and to make our voice heard together because there's a lot of us and we really can lift each other up.

Lachi:

And that one in four statistic is a pre-COVID stat, so we don't even really know. There's a lot of long-COVID. In fact, one in four people that get COVID get long-COVID.

Speaking of one in four. So there is a lot. And then we don't really talk about sensory disability apparently. I think it's one in six Americans have a sensory disability, and a lot of that is not talked about. There's a lot of diversity, not in terms of intersectionality, but in terms of disability that a lot of folks don't talk about because of the non-visible disability. So why we are not talking about it is beyond me. The only thing I can think of is the fact that we operate in this sort of currency of shame, right? Oh yeah.

Lachi:

And we need to break out of that currency because at the end of the day, like I said, I owe my success to, how do I put this? People used to tell me, or they still do, which is super annoying, that I'm brave, that I'm courageous, that I have superpowers. I'm going to tell you right now, I don't have any supernatural powers. What I have is natural, okay? It's not supernatural. I'm not an oracle, okay? Just because I'm blind, what I have is something better than bravery and better than courage, what I have is identity pride. What I have is that no one can make me feel ashamed about my disability, and that is what draws people to me. That is what draws people to what I have and who I am. Because that's the one hump that society just can't get over this shame or this fear of eventually becoming disabled or this fear that they're going to look weak or this trauma porn of oh my God, or whatever. But yet they still walk up to someone and say, oh, you're so brave and inspiring, while meanwhile, they would absolutely hate it if that was said to them. And so I believe that we're trapped in this idea of shame, and really the only way to crack it is through culture.

Lily Newton:

What a soundbite. Absolutely. I mean, shame is, I always say, it's just such a useless emotion. I can't stand shame. It keeps us down. And I think that I've never thought of culture as the antidote to shame, but it really is because I think about parts of my, I'm half Indian and things that my Indian family might do that I might be like, oh, that's odd. But then it's like, no, this is our culture, so I'm proud of it. And that, oh, that pride is wonderful. I'm glad you bring that up.

Lachi:

Yeah, yeah. I mean there's a saying by Laura Hershey who passed away in, I think it had huge disability activist and artist. And she says, it's not, you aren't the one who caused you to be ashamed, but you can be the one who causes you to feel so shame is brought onto you, told ashamed, but you have the power to feel pride and to knock down that barrier of shame. What shame is for people with disabilities is internalized ableism. And the real way to really break down a lot of those internalized ableism is to start showcasing people, disability, cultural pride, showcasing the problem solving skills, showcasing the creative thinking, showcasing the innovativeness, showcasing the resilience, showcasing so many of the things that come with being a born innovator, which is what you are if you're a person with a disability or an eventual innovator, if you become someone with a disability showcasing those, and I say this, I constantly cite the fact that in Brazil when we had the Paralympics in Brazil in 2016, there was an increase in those who registered for having a disability because they got to watch themselves winning. They got to watch themselves jumping over whatever you do in the Olympics, I dunno, swimming, whatever, doing amazing feats in sports and in other really hardcore adventurous activities. And they actually went and registered and said, you know what? I have a disability too, because they were showcased pride in their disability culture.

Lily Newton:

Oh, that's such, I'm so glad you shared that. I didn't know that. That is really, really cool. And I think goes back to what you said on that, the one in four statistic is probably outdated at this point. One thing that I think about a lot is there seems to be kind of stark lines drawn between, I have a mental illness, I have a chronic illness, versus I have a disability. And I think that as more people are talking about chronic illness and mental illness and realizing these are disabilities and accommodations need to be made and that the disability community is something that you can have pride in and it's a great community to be a part of. I think that the more we allow people to understand that the more people with things like mental illness and chronic illness will allow themselves to receive necessary accommodation and accept that disabled identity.

I think that such an interesting point about the Brazil Paralympics. I think that that is honestly what we're trying to do with this podcast in a way, say, look at this. We get to have these amazingly cool conversations. I get to meet incredible recording artists and just incredible people all around. And guess what? I wouldn't do that. I would not have this amazing experience if it weren't for the disability community. And I'm proud to be a part of it. And if there's anyone listening who's feeling like, I think I might be disabled, but I don't want to take up the space, we want you.

Lachi:

We've got space for you. Space is infinite, go outside and look at the night. Sky space is infinite. Also, language is very important as well. Owning our language that we want to use or want to get behind. And when I think of things like people wanting to say chronic illness versus disability or mental illness versus disability, that's when I start to recognize that they're not necessarily part of the community yet. Because if you already don't like the word disability and you're afraid of the word disability, why are you okay with the word illness? So start for year and ear figuring your ish out. And that might be a personal journey, but one thing that I do know is that people in the disability community are 100% fine with the word disability and fine with the word disabled. And things like words like differently abled are huge.

No-nos, like handicap, handy capable, all of that stuff is just absolute garbage. So just like once you join the community, you won't have to say that anymore. And it's so freeing, wheelchair bound, you're not wheelchair bound. Your wheelchair is your tool to be independent, not your bounding thing. And so I feel that language can be empowering. And for me, I like the word disability because people think of the prefix diss as a negative word. It just means opposite of ability. But at the end of the day, diss actually means to set apart. And I believe that my disability sets me apart. I mean, boo, I'm proud of it. It makes me resilient. It makes me be able to navigate life on hard. You ever play those video games and you're playing it on the hardest setting and you win and people are playing it on easy and they're losing and you're like, well, I just beat this on the hardest level, so I obviously I'm the shit.

So that's life in disability. Why wouldn't you want to be proud of? You know what? Look, if I'm going to race with a bunch of other people and everybody starts 10 feet ahead of me and I still freaking hit the finish line before they do, that's the best feeling in the world. Why wouldn't you want to be that one who wins that life on hard? So come join it. The water is fine, disability is fine, disabled is fine. Let's get over it. Everybody's like, oh, but I'm this and I'm that. If you are afraid of the word disability, I feel like that, okay, this might be a little controversial, but people who are like, oh, I'm so cool and I'm so hip and I don't want to say disabled, well then you're not really that cool in that hip because you're afraid of a word. Get cooler and hipper. Honestly, I'll have more respect for you if you're not afraid of a label, but if you're so afraid of this label, then you're really not All the things you're trying to pretend you're because you're the one afraid.

Lily Newton:

Yeah, absolutely.

Lachi:

Get riled up, guys!

Lily Newton:

I love it. That's what we want on this podcast. We're riled up. It's important. These things are important. And I think everything you said about language is important. Well, I do want to hit on mother Judy Heumann a little bit more. Anytime I hear anyone using mother to describe a celebrity, I'm like, my mother is Judy.

Lily Newton:

She's mother of the Disability Rights Movement. And for me, disability pride, Judy led me to feel pride. And one of the first tasks I got to work on working at Easterseals was writing a children's book about Judy Heumann. And I just got to know so much about her and I have so much I always want to say about Judy. And so, for our listeners who don't know, you wrote an incredible song called Lift Me Up, which pays tribute to Judy Heumann. And there's a lyric in that song where you said, see who I need to be for the world I wanted to see. And I think that that is so beautiful because that's what Judy did for me, was I learned about her and then saw, oh, this fight is worth it and we can do it. She did so much in her single lifetime because she wanted to make the world she wanted to see. So I just love that song. I mean, even if it wasn't about Judy Heumann, it's an absolute bop. So what made you decide to write that song? What was that experience like?

Lachi:

Yeah, this is one of my favorite things to talk about. So listen, I'm a touring artist outside of disability. I am a globally touring artist. I've worked with a bunch of really big and great names. I've been released by a bunch of labels and music is how I expressed myself. It's how I've always really expressed really big things in my life, and it's how I expressed my disability and came into my own pride. Judy Huon was someone who I had met many others. I met Judy Huon, trashed watching Comedy Central's, drunken History, and I realized the mentor that I'd been meeting desperately was right there on that screen. And it was like a big surprise to me when she actually reached out and told me she was a fan. I was like, you mean you the one from the TV? Like, whoa. So that was a huge thing for me. We became huge friends. We were just badasses just doing what we had to do, calling each other up all the time. And when she passed away, it was really a shock because I had only spoken to her a few days earlier and she was yelling at me about something or another.

And of course she was actually hooking me up with somebody. She often made me sing to her friends. She would just put me on speaker. I was her singer friend. She'd make me sing to people. It was just really embarrassing for everyone involved. But she was such a huge part of my life when she passed away, it was a big blow. So with everything else, I coped by writing. I was sitting at the keys, the tears were coming, the song was coming. A good friend of mine, James Ian, who was also a mentee of Judy's and who was also very close, she'd make us call each other and sing to each other. It was really awkward. We decided to write together, and that's how the beginnings of the song came about. He too is a RAMPD member so that anyone who's a RAMPD member is an established music professional with a disability.

Lachi:

So that's already kind of baked in. Gaelynn Lea, who's a violinist wheelchair user, she jumped on board. April Gabrielli also a RAMPD member, jumped on board to the song write. She was like, I love what you guys are doing, but it's just your feelings on a page. Can we make this a song? So she helped us songwrite, […]who's a mastering engineer who's worked with Sony, came into mix and master and we started as the community. Everybody was a part of RAMPD. As the community came together to make this song, we realized it was larger than a song larger than us, and it was coming together very fast. And we quickly realized that we wanted to put this out in July because of the big 50 years of the Rehabilitation Act celebration. It would be a great homage to Judy and it would help bring the community together. Somebody was like, let's make a music video. So of course, we bring in Day Al-Mohamed who is a blind video producer, and she and I worked on a bunch of the PBS stuff together. So she had just was leaving the White House and I jumped in front of her while she was leaving the White House and said, boy, do I have your first project. We get her on board, we get Catriona Rubenis-Stevens who I actually met through the Easterseals Film Challenge. And so Cat has done a bunch of stuff with Easterseals and I loved her as a director. So I threw those two into a room and said “direct!” And I'd always wanted this sort of idea of deaf folks in front, or I'm sorry, just a ASL in front and then us in the back. And so I was saying, let's have us in a small box in the corner while the performers, and they were like no boxes in corners.

And so we were projected behind our authentically deaf and hard of hearing superstar cast. I can't believe we got everybody. We got like Amber Galloway, are you kidding me? She and I have been good friends for a while. Otis Jones, who I had met through the process, he's a huge TikTok star who I'm now obsessed with and in love with. I hope he doesn't watch this and hear that. And then Arnell Russell, who is also a TikTok influencer and Instagram influencer who is an absolute superstar, all of them came together to be our amazing center stage authentically deaf and H-O-H ASL performers. While James, Ian, Gaelynn, and I were projected behind them, we had a completely diverse everything from LGBTQIA to native to BIPOC, to all sorts of situations running the crew. It was such a beautiful thing. I don't know how we got this all done. The amount of time we got it done, we released it through RAMPD Records, which is black-owned and black run, and we had it out in time to celebrate, and it just got picked up by everybody.

I mean BET loved it. MTV loved it. We got on the radio, we peaked at number 29 on the radio, like what? In the adult contemporary charts, the Christian charts picked it up and the YouTube blew up. Google got wind of it and was like, we want to be a part of this. We'll do whatever you want. Just tell us. And we were like, “you're Google! AH!” So it was just the most amazing experience and it all was out of love. I mean, Judy's hand was all over the whole thing. She was telling all of us to come together. She was marionetting us like all of her little children and it worked out because of Judy's legacy and Judy's love. And one of the criticisms that I got from this whole thing was Judy, she's very much into just the disability rights movement and the laws and the legalese, and of course I'm trying to celebrate disability culture and disability justice. And so folks were going like, why are you attributing a disability culture song to Judy Human? Also, Judy Heumann, let's all be frank, is a white woman who was of an okay class and my only comeback is that look, Judy was my actual honest mentor. She took me under her wing and she did a lot. But at the end of the day, the music video showcased so much diversity within the community. We had audio description done by Tony-winner Ali Stroker right at the top, who actually played her in that Drunk History video. Full circle. We had multiracial ASL interpretation. We also had transcription in the Google YouTube video. We had all of us in the background. We had a very diverse cast and crew. And so we did as much as we could to not only make the video truly accessible, but also to make sure the cast and crew below the line and above the line were folks with diversity and disability.

Lily Newton:

So amazing. I thank you for sharing all of that. I just adore Judy and I wrote the children's book and I was supposed to get to meet Judy in last spring and then she passed right before that happened. And I felt like I missed an opportunity to really meet one of the greats in our community. But since her passing, I have really seen how you can't actually miss the chance to connect with Judy Human if you're looking for it. Her legacy lives on in so many people, and I think that you, especially the work you're doing, you are talking the talk and walking the walk by you are a true community builder. I literally have a tattoo that says “Do Not Panic, Organize” because –

Lachi:

I like that.

Lily Newton:

Because I think it's the truth. I think community building is how we change the world, and I think you are doing that. So I'm honored for you to be on this podcast. I'm sure Erin's feeling the same way.

Lachi:

Thank you both for having me. This has been quite the experience and I always just love to talk about these things. So thank you so much for inviting me on here.

Erin Hawley:

I'm so happy that you joined us and this conversation means a lot to me. So thank you so much.

Lachi:

Thank you so much. And also, well, before we close up shop, there is one thing I would be absolutely remiss if I did not say and if I did not shamelessly plug myself. Absolutely. So we just recently got a book deal with Penguin Publishing. We got this book deal through an imprint called Tiny Reparations by Phoebe Robinson, who is this really amazing queer black comedian slash actress and writer who likes to amplify black and black female voices. The name of the book is “I Identify As Blind,” and what I'll be writing about is really cultural criticism on disability identity and disability narratives currently within pop culture that are not highlighted and just need to be highlighted a little bit more. So I'm really excited to write that book that'll eventually come out in 2025 and it will be star studded. We are going to go all the way out and really showcase disability identity and disability culture in this book. So definitely wanted to just celebrate that that's going to be coming out. And frankly, I think this is the first actual platform where I'm talking about this. So you heard it here, folks. I identify as blind coming out in 2025.

Lily Newton:

Oh, yay. What an honor to get to share this news with the world. I'm so excited. My podcasting setup behind me, I have a bunch of books that have really shaped who I am in my disability activism, and I cannot wait In 2025, there will be a copy of “I Identify As Blind” on there.

Erin Hawley:

Awesome. My friend Anna, we're definitely going to feature your book when it comes out. I'm so excited.

Lachi:

I'm going to hold you to that, both of you. Yeah. Do it. Oh, you better. A big part of this community building is accountability.

Lily Newton:

I promise we'll do it. Well, thank you so much. What a phenomenal interview. I feel overjoyed that we get to share this with the world. I think that there are a lot of nuggets of wisdom throughout this episode that are going to change people's perception of disability and also this was just a really cool hour to get to spend talking to someone I respect and think is just so wonderful. So thank you so, so much.

Lachi:

Thank you.

Lily Newton:

Thank you so much. And thanks to our listeners for another wonderful episode of Everything You Know about Disability is Wrong. What a great episode.

Erin Hawley:

Yeah, I totally loved it. I love her. She's like the best person and I'm so happy that we got to connect with all these amazing people this season. It's the best.

Lily Newton:

Yeah, what an incredible lineup. And it was a total accident that our lineup this season is entirely women. But I think it's really cool and I just love having such great perspectives from disabled women. We don't have that much representation of disabled women and happy to be doing it on here. If you haven't listened to Lachi's music, especially that Lift Me Up song that we were referencing, the song she wrote for Judy Heumann, that song is incredible. And also just all of her music is really cool. She also has just been announced as a mentor at the Grammys. Just really cool stuff going on in Lachi's life. I recommend that our listeners go follow her on every social media. And yeah, thanks Lachi for coming on. What a wonderful episode.

Erin Hawley:

And that was a great episode and we're really excited for season three of the podcast.

Lily Newton:

Season three. I can't believe it's already here. We'll see you next season listeners. Thanks for tuning in and if you happen to just listen to this episode, go back, listen to the rest. We've got two seasons worth of content out and we hope you enjoy listening. We'll see you next time on Everything You Know About Disability is Wrong.

Erin Hawley:

If you like what you heard, go ahead and subscribe and leave us a review wherever you get your podcasts.

Lily Newton:

Thank you to our listeners, and as always, thank you to Easterseals for giving us the space and resources to share such authentic conversations from within the disability community to our listeners.

Erin Hawley:

And I'll see you next time for another episode of Everything You Know about Disability is Wrong.