ANCOR Links: Season 2, Episode 3

Alli Strong-Martin

Hello, hello, I am your host for today, Ali Strong-Martin, and welcome to season two, episode three of ANCOR Links, a podcast produced by ANCOR. This podcast was created to highlight the link between an array of conversations and the ongoing work toward full community inclusion for people with disabilities. Each episode, our goal is to introduce you to a person, or topic adjacent to the disability space and find important connections and linkages along the way. Today’s show, which I’m super excited about, is a pretty direct link, but an important one nonetheless. We’re talking about Disability Pride Month, which officially kicked off on July 1st. We’re gonna get into the history of Disability Pride Month, why it’s in July, how it’s celebrated, why it matters to so many people, and more. But we’re also going to talk about the fact that disability and disability pride is a complex identity to navigate. Whether it’s fighting against internalized ableism, combating social narratives that disability is a bad thing or a tragedy, or simply navigating complicated feelings of frustration or grief that come with existing in a world that wasn’t designed to include you, disability pride can be hard to come by sometimes. So usually disability pride isn’t as easy as just waking up one day and deciding to wave a flag and declare yourself loud and proud of who you are. For most people with disabilities, it’s a longer or lifelong journey of self-acceptance, finding solidarity and strength within the disability community and learning to celebrate the diverse ways that all of our bodies and minds work. So we’re going to get into all of the beautiful, messy complexity that is Disability Pride later on in the episode when we listen to the story of our amazing guest, Olivia Fadul. But before we bring in Olivia and give you a peek into her story of finding Disability Pride, André and I took a few minutes to talk about the history behind Disability Pride Month. So André, as the only person out of the two of us who was alive when Disability Pride Month became a thing, can you tell us a little bit about what it is?

André Floyd

Oh, starting off strong, hitting me right in the insecurity. Yes, I was alive in 1990. It was fine. You know what? I’m going to be proud of that. I liked the 90s, just don’t dig too deep into like some of the social stuff and things that came from the 90s nostalgia. It cleanses many things, but back to Disability Pride. So for a long time, I thought Pride Month was just in June, which of course it is. And that is, you know, the LGBTQIA+ Pride Month. And I’m going to be honest, I, it took me a bit to learn that no, these are two separate things and Disability Pride Month is in July. And isn’t necessarily related to June’s Pride Month, which is LGBTQ plus Pride Month as well. So it took me a little bit to figure that out, but I did. And when I did, I found out that actually Disability Pride is its own separate thing that is actually really cool.

Alli Strong-Martin

Love that. And could you tell us a little bit why Disability Pride Month is in July? Is there a reason for that?

André Floyd

There is. And so, okay, so in July of 1990, which is a year that I was certainly alive in, it was a great time. I’m sorry you missed it. It marked a huge milestone in disability rights. That’s when the Americans with Disabilities Act, or the ADA as most people know what it is, was passed. And the ADA was a landmark piece of legislation that prohibits discrimination on the basis of disability in areas of everyday life. So these are things that included employment, transportation, public accommodations, access to local and state government services, and more. I mean, think about all the scope of all of those things. That changes everyday life in a massive way. So it was a massive piece of legislation. It was super important. We talked about it a bit in the previous episode when we discussed Olmstead. So check that out if you haven’t, plug. In 1990, when Boston held the first Disability Pride Day. But then the next recorded Disability Pride parade slash celebration wasn’t until 2004, so 14 years later. And that was held in Chicago. New York City observed the first official Disability Pride Month, get this, only in July of 2015. Now, I know you are much younger than me, but I do believe you were alive in July 2015. Is this correct?

Alli Strong-Martin

I was present in July of 2015.

André Floyd

And that was the ADA’s 25th anniversary. So I had to get you back for that, you know, the 1990 shot. I don’t know if I did by calling it young, but whatever, it’s all I had.

Alli Strong-Martin

Well, thank you. I’ll take it. I’ll take it. And no, that’s really interesting. And thank you for doing the digging to find out that it went from a day of celebration to a month, but that took decades to do so. And I think that it’s cool that every year since 2015, we have celebrated Disability Pride Month. But I think in the last couple of years, it’s really grown in people’s awareness of it being a month in July that we celebrate. And I think that conversations like this are important to keep raising awareness that it’s a really cool thing.

André Floyd

Yeah, for me, I just love the fact that…You know, because it comes with the familiar terminology of Pride, which I love June. I love that it’s Pride Month. I love what it stands for. I love the celebration that it is. And hearing that Disability Pride is something similar, but for a different kind of community of people and what it stands for and what it means is why I really loved. I’m going to go ahead and say, let people know. I was in the background of your conversation with Olivia and I loved it. And so I’m really excited for people to listen to this, because it is different and it is different learning about the community and how people’s entryway into the community and finding pride within your disability and the journey that that takes. So I love that this is a month-long celebration, much better than being a day or a week. So I love that it’s a month-long celebration and I think it’s so necessary and I just want it to become more mainstream. So I’m hoping we can let people know more about it and also through Olivia’s story and yours as well, how significant it actually is.

Alli Strong-Martin

Right, and thank you for that, André. I think that tees up our conversation with Olivia that I had really, really well. When we got into the conversation with Olivia, it really made me think about my own story and my own ways that it’s been really complicated for me to navigate my own disability and that it’s not actually that straightforward to just say like, yeah, I’m super proud about how this shows up in my life. And to see that in Olivia’s story, Disability Pride is this really personal thing that each individual person with a disability has a different journey in how they, or even if they relate to Disability Pride. So I love that you were able to listen in on the backside of my conversation with Olivia because I am so excited for you all to be introduced to Olivia. She is a disabled researcher, a mental health counselor, and again, this really passionate advocate for people with disabilities and their right to show up as they are in their communities. So again, can’t wait for you all to listen in. Here’s more about Olivia.

Olivia Fadul

My name is Olivia Fadul and I am an individual with hearing loss. I’ve had hearing loss since I was five years old. Hearing loss came up for me when I had a high fever when I was about four or five years old. My mom told me that I couldn’t hear. And so this was picked up on my first day of kindergarten. My mom got a video from the kindergarten teacher of me. And on the video, you can see the teacher yelling my name to line up and I didn’t line up. And that was a signal at age five that I lost my hearing. And so when I say lost, lost is like grief for me because I can remember what it was like to have hearing.

Alli Strong-Martin

Olivia’s experience with acquiring her disability at an early age instead of being born deaf or being born hard of hearing, this experience played a huge role in how she had to navigate her identity as a young person. In my conversation with her, Olivia made a point to say that she’s not afraid to say the word disabled and that when she says it, it shouldn’t be viewed as a shock, or a dirty word or a bad word. She told me about how acquiring a disability later in life often involves a different level of negotiation with yourself because you knew what your life was like before you had a disability and then you have to learn and have to adjust to a world that wasn’t designed to include you in it. So Olivia shared with me that when she sits back and retraces the path that got her from that kindergartner who is being yelled at by her teacher to the doctoral student and licensed counselor that she is today, she said that there’s a direct connection between her choice in deciding to be a counselor and helping people navigate their own identities and learn how to lean into positive identity development.

Olivia Fadul

Yeah, so my story. My identity comes from my early childhood loss of being an individual hearing loss, and that plays a role in me being a counselor. Because I can remember what it was like being like Rudolph the Red Nose Reindeer, not being included in people’s games, being excluded. And so from that painful childhood, living with a disability, being an individual that is Filipino-American. I was the only Filipino-American, only Asian within many of my classes. And so it was like, who am I? I have hearing loss. Why am I not being picked on the playground to play with other kids? And I think from those early memories, that was like a motivator for my career as a licensed counselor to help children, to help adults. I wanted to make their life better, to provide that counseling so that they can feel seen, heard and validated. And so I’m very thankful, even though it was a very painful childhood of exclusion, it was also a very empowering journey to learn about disability through the first-hand experience of being an individual disability because to be able to live as a disabled woman and sometimes it feels overwhelming that I made it this far.

Alli Strong-Martin

In our conversation, Olivia had so many things to say that made me reflect on my own relationship with disability pride. She made a point to share about the privileges that she holds as sometimes being able to “pass” as non-disabled. And this is something that I personally identify strongly with. I’m someone who has an anxiety disorder that manifests itself, in what’s called body-focused repetitive behaviors or BFRBs. So other than the visible scars on my hands, which I can cover up by wearing long sleeves or hiding my hands in my pockets, there’s not really a space that I come into where I am automatically labeled as someone who is disabled. I get to “pass” as someone who does not have a disability. And we’ll talk about that idea of normal and how society has created that idea of normal later on in our conversation. But Olivia’s conversation with me made me reflect on my own journey of, for a long time, I questioned and I had to navigate whether or not I should even be included in the disability community. I have come to learn that the disability community has created enough space for me and for that I am so grateful. At the same time, I do have to be open and honest about the different privileges that I myself hold. So in her own story, Olivia has to navigate the spaces that she’s in and negotiate her own identity. And importantly, in doing so, she’s had to learn how to flip the narrative that society tried to write for her.

Olivia Fadul

When I wear my hair down, I can pass as an individual with no disability, because you can’t see my hearing aids. But if I pull my hair up, you can see my hearing aids. And sometimes when I’m tired, I slip back into having a speech impediment, because I had four years of speech therapy. So throughout my life, I have tried my…best to be to pass as normal as I can. I had to learn how to flip my narratives and not just say I don’t have my bad days in my bad days and because there’s days that I’m like if I was normal like everybody else and when I’m reading research and I’m talking to other individuals with disabilities it’s almost like the word normal comes up a lot. And I think that may come from being ableist because sometimes when you have a disability, you learn ableist messages from social media, from the newspaper, from education, sometimes teachers, sometimes family. And when I say family, sometimes they may have the best intention, but sometimes they do not know that there’s that self-pity or they’re treating you like a infant. It’s almost like babying you. And so you get to a point in your life, and I remember when I was growing up, my parents and my school teachers and sometimes people around me, they wanted to do things for me. It almost felt like I was being treated like a child sometimes, and people would do things for me without asking me my permission. And so I got to a point that I didn’t like it, that I tried to do as many things as I could and tried to be independent.

Alli Strong-Martin

She, like so many other people with disabilities, had to fight against internalizing those ableist messages that society creates about disability. We’re often taught that disability is this negative thing, this something that’s inherently wrong or something that should be feared. But why are we taught to fear disability? I think it’s because we’re afraid of not being included. We’re afraid that our lives would be so different if we did have a disability because we wouldn’t be included, we wouldn’t feel like we were a part of a community and we’d also be afraid to be labeled as quote-unquote not normal. So Olivia shared with me that she faced both this painful exclusion and the feeling of not being normal throughout her childhood. That time when she was first starting to form her self-esteem and self-identity but that’s not the end of Olivia’s story, because then after this childhood, she arrived at college and something shifted.

Olivia Fadul

It wasn’t until I was in college at Jacksonville State University, at Jacksonville, Alabama, that I had my first accommodations. I had closed captioning. I had captionists follow me to classes, and it showed me what accessibility was like and what education was like. And it was a struggle because I never had it before. But additionally, I saw my grades go up. But at the same time, I didn’t know how to advocate for myself. I did have a best friend in college. She was profoundly deaf, and she and I would support one another. And so through that friendship, I found some disability pride, even though…Sometimes it was like looking at a mirror because I had never really had another deaf friend and I am profoundly deaf in one ear. So that’s why I say that I belong to the deaf community, even though like I have moderate hearing loss. It’s kind of weird because I say I’m deaf, but then I’m also an individual hearing loss. So I think for individuals hearing loss, it’s almost like negotiating your identity. And I think when I met my friend, my friend in college, it was such an awakening. It was like, oh my gosh, there’s somebody just like me. And it made me so happy to be able to live with a disability, to be able to have somebody that has a shared collective identity.

Alli Strong-Martin

This part of Olivia’s story made me think about the way that society has tried to minimize or isolate the experience of people with disabilities. So there are 1 billion people with disabilities in the world. One in five U.S. adults have a disability. So it’s like 60 plus million people, adults in the US, have a disability. And disability is an identity group that any person, anywhere, can join at any point in time in their life. But yet again, this disability experience can often be a really isolating identity to experience that’s both for people with disabilities and those who support them. I think that relates to Olivia talking about this internalized shame or feeling like something’s wrong with you that people disabilities have to navigate throughout their lives. So in Olivia’s story, it wasn’t until she was 18 or 19 years old that she found someone who could relate to her story. And that again got me thinking about my own story. For me, it wasn’t until I was about 22 years old in graduate school that I learned that my skin-picking disorder was actually something that millions of other people experience as well. It wasn’t until I was 22 that I began to understand that my disorder wasn’t something that was broken or wrong. It was just a different way that my brain had developed and a different way that I process my environment and my sensory inputs of the environment around me. So that shared sense of strength, that sense of finally knowing that you’re not alone and you don’t have to be ashamed of who you are is so huge.

Olivia Fadul

It really wasn’t until I was in my doctoral work in University of New Mexico when I started doing research on disability that I found myself and found pride in myself because I was, I had so much shame the first year of my doctoral program because I was the only person with hearing loss, the only person that had to ask for accommodations. It was a part of me that felt so much shame about who I am. And so I used that shame to research. I took that shame and I tried to find other stories about individuals like me. And when I started doing that, I found people in counselor education that have disabilities that are professors and I read their stories and it was like how it got me to the next point. And so I like to say this but they taught me about disability pride.

Alli Strong-Martin

Olivia and I could have talked for hours about the importance of community. She told me about how in addition to finding disability pride through her research, she also talked about how her research made her realize how important it was to create spaces for people with disabilities to have a support group or spaces that could come together and learn how to not only get comfortable talking about disability and their experience, but also how to share resources. Olivia started a deaf and hard of hearing support group at the University of New Mexico. I think this is so cool. In this support group, students learn about their rights, different accommodations, and strategies to access those accommodations, and they experience a level of solidarity and that understanding that they’re not alone in what they’re going through.

Olivia Fadul

I think basically having a support group to be able to process all that information with other individuals that are disabled and additionally have like a cross solidarity. A lot of times within disability we separate ourselves. Sometimes we’re like, well, I’m not blind. I don’t have a hearing loss. How do I relate to others that have disabilities? But when we look at our stories, when we share when we have support groups and we’re able to have that cross solidarity, we’re able to empower one another, we’re able to teach one another, hey, this is how I ask my boss if they can support me with accessibility.

Alli Strong-Martin

I thought it was so important that Olivia mentioned cross-disability solidarity, because it’s so easy to think that someone who is blind has nothing in common with someone who has an intellectual or developmental disability. It’s so easy to think that me as someone who has anxiety disorders and has been diagnosed with major depression, it’s so easy to think that I might not have something in common is hard of hearing. But Olivia’s story in our conversation showed me that when we come together, when we learn from each other, those tools and resources and finding that strength in solidarity. That’s the space where we can really develop that pride, not only in ourselves, but in the community and in the history of people with disabilities. So Olivia and I rounded out our conversation and I asked her about the first time that she found out about Disability Pride Month. She starts out by remembering when she learned that there was a Disability Pride flag.

Olivia Fadul

And I was like, oh my gosh, we have a flag? We actually have a flag? And that flag is so monumental because it represents neurodiversity. It represents individuals with sensory loss. It represents mental health. So it has different representations on the flag and each color symbolizes different disability. And I love that. I love that. How it came about was there was I believe she was an artist. I remember reading the story that she wanted a flag and she wanted a parade. So eventually they did have a parade. So this flag, basically, it was born very recently. I want to say it was a few years ago. At first it was like a zigzag and then they made it more disability friendly. So then it became solid and then they made, they had like subtle colors because I believe that the first flag, they were concerned about people having seizures. So they wanted to be sensory friendly. And so this flag became a symbol, similar to LGBTQ culture. We have a flag and we have something that we can all come together and Disability Pride Month is now in July. And I love Disability Pride Month because it happens to be on the same month that American Disabilities Act was passed. And so July, 1990 is so monumental because if we didn’t have ADA, we would not have accommodations.

Alli Strong-Martin

So here’s what’s so powerful. People with disabilities took this identity that is so often silenced, that is so often not celebrated, and is so often feared. They took this identity and turned it into a time of celebration. But I want to say here that we know that Disability Pride Month hasn’t made things like ableism and discrimination go away. We know that the Americans with Disabilities Act hasn’t made things like ableism and discrimination go away. But there’s still something powerful in understanding that and acknowledging that truth. But at the same time, every year in July and throughout the year, let’s be clear, but that every year there’s a dedicated time for disabled people to continue to come together and celebrate the beautiful diversity of humanity, of the different ways that our bodies and minds work, and the different ways we can continue to show up and support one another. Disability Pride Month is a time that we can honor the people with disabilities who have come before us and that we can reflect on the ways we need to continue the fight for inclusion and justice of people with disabilities in our communities.

Olivia Fadul

And sometimes I get a little emotional because it took a long time to get a celebration. It took a lot of long time for disability to come into the conversation. And even in my own field of mental health and education, I’m still fighting for rights for students with disabilities and clients with disabilities. So July is a month to celebrate my clients, celebrate myself, and celebrate everyone internationally that has a disability.

Alli Strong-Martin

This fight for inclusion and justice means so much to so many people with disabilities. It means so much to the people who support them. And this conversation that we had with Olivia, it means so much to her. And for her thinking on the journey of where she started as a young girl who felt excluded, felt like there was something wrong with her, felt like she wasn’t worthy of having friends or being able to be picked on the playground to now being a proud disabled woman, a fierce disability advocate, a licensed counselor, and a doctoral student. It was so great for me to be able to speak with her, and I feel so privileged to have been able to hear part of her story on where she’s come and what that makes her feel and experience those range of emotions in reflecting on disability pride and the journey that it took her to get there.

Olivia Fadul

And I say disabled because to me it’s not a dirty word. And so it’s not a cuss word. It’s just who I am.

Alli Strong-Martin

Thank you to Olivia Fadul for sharing her story and her incredible, incredible insights with us. Her story is such a powerful example of what Disability Pride is, what it takes to even get there to feeling Disability Pride, and why Disability Pride is worth fighting for. Of course, I also have to say thank you to André Floyd for joining me on this episode. Thanks to our co-producer, Tricia DePalatis, for keeping us on track or at least trying to. And finally, thank you for listening to ANCOR Links. We’ll talk to you next time.