Incluse This!

Sarah Kirwan
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Not just a podcast: We’re a movement to amplify disabled voices, tackle the intersectionality that naturally exists for people living with disabilities, connect people through shared experiences, and work alongside disability allies. This safe and coalitional space was created for critical conversations at eye level that lead to change – on individual, local, state, and federal levels. We host in-depth interviews with a wide variety of guests who bring disability to the forefront of the greater diversity conversation, and progress movement for disability equity forward.

Episodes

  1. 04/07/2021

    Incluse This! Episode 12: We Have Sh** to Understand

    Episode 12: We Have Sh** to Understand GUEST: Molly Bloom, PhD, Inclusive Design Researcher, Adobe https://media.blubrry.com/incluse_this/content.blubrry.com/incluse_this/S1_E12_We_Have_Sh--to_Understand.mp3 The Incluse This! podcast has forever changed me, and that’s the point. As my dear friend, colleague, and guest this week so eloquently put it, “One of the main ways this journey has impacted me is that I’ve learned that I absolutely have internalized ableism. I think – there’s productivity and there are timelines, and we have to stick to that. And you kindly remind me what it’s like to experience your disability. It has helped me shift the way I understand how we can get things done in a more collective way, that’s less about this sense of productivity that requires an able body and an able mind.” She goes on to say, ” I’ve learned about the different perspectives that are in different disability communities within the larger community, and how those don’t always align with the people who might be the most vocal advocates in the disability community.” We hope you’ve enjoyed the journey as much as we have! Until next season…take care and be well. QUICK LINKS As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability. OUR GUEST: Molly J Bloom, PhD Molly has felt an affinity for and responsibility to the disability community since sustaining a life-changing injury as a teenager in 2006. Since then, she has co-founded the only women’s wheelchair basketball team in California, completed a PhD drawing on anthropology and disability studies, and learned from her friends and peers that disability community always involves sharing knowledge, advocacy, and living joyfully. In her doctoral studies at UCLA, Molly brought together critical perspectives on race, class, and disability community. Her research, funded by the National Science Foundation among other organizations, was recognized for its commitment to diversity when she was inducted into the Edward A. Bouchet Honor Society in 2018. She has authored publications on topics ranging from adaptive athletics, to disability in the Middle East, to Brazilian Sign Language. Recently, Molly has relocated to home of the American Disability Rights Movement, the Bay Area, where she is busy working as an Inclusive Design Researcher for Adobe and soaking in the activist milieu. She thrives on connection and collective growth and longs for the day when she can build joy in-person with her disabled kin. TRANSCRIPT Hi and welcome to Incluse This! I’m your host, Sarah Kirwan, and this is a movement for disability equity. Today, we’re talking with my very dear friend and colleague, Dr. Molly Bloom, and we’re talking about Season One of the Incluse This! Podcast, which as of today is a wrap! Dr. Molly Bloom has felt an affinity for and responsibility to the disability community since sustaining a life-changing injury as a teenager in 2006. Since then, she has co-founded the only women’s wheelchair basketball team in California, completed a PhD drawing on anthropology and disability studies, and learned from her friends and peers that disability community always involves sharing knowledge, advocacy, and living joyfully. In her doctoral studies at UCLA, Molly brought together critical perspectives on race, class, and disability community. Her research, funded by the National Science Foundation among other organizations, was recognized for its commitment to diversity when she was inducted into the Edward A. Bouchet Honor Society in 2018. She has authored publications on topics ranging from adaptive athletics, to disability in the Middle East, to Brazilian Sign Language. Recently, Molly has relocated to home of the American Disability Rights Movement, the Bay Area, where she is busy working as an Inclusive Design Researcher for Adobe and soaking in the activist milieu. She thrives on connection and collective growth and longs for the day when she can build joy in-person with her disabled kin. Good morning, my friend!  Welcome back to Incluse This! I actually can’t believe this day is here. We’re recording the final episode of season one of the Incluse This! Podcast! Yeah, good morning. I am really grateful to be here. I’ve been listening all season and not just to the episodes where you had me but to the episodes where you had other people. I actually can’t listen to the episodes where I’m on them, but, it’s been a really wonderful season and I’m so excited that I get to wrap it up with you. Oh, I’m so happy you’re here. It’s been, I have a hard time listening to myself, so I haven’t been going back to all of them either, but I think I’ll have to, because isn’t that part of how you learn how to be a better speaker. You have to put yourself in those uncomfortable positions, I guess. I guess that’s part of it. Just, you have fun with that. (laughing) Thank you. (laughing) So, when I first started talking about podcasting, everyone’s like, yeah, it’s so easy. You’ll love it. I just want to say that I didn’t find any of this work to be easy. At times as you know I not only didn’t love it, but I actually hated some of it. I think the most laborious part is the editing process. But, the great thing is that I went from having no idea how to use audio hijack and Adobe audition to whatever level of skill you’d say I’m at now. (laughing) Woo hoo. Congratulations. Right? Thank you.  right. I think it’s ironic, actually that the impetus for launching this podcast was my anger at the ableism that was and continues to put disabled lives at risk during the pandemic, as well as the murder of George Floyd. And here we are today, a little more than a year later, we’re watching former police officer Derek Chauvin’s murder trial, as his lawyer tries to argue that it was drugs and George Floyd’s system, not this white supremacist police officer that killed George Floyd. We also have people scrambling to get vaccinated after having been deep prioritized through this whole process. We have anti-Asian hate crimes at all-time highs. We’ve had several mass shootings in this country in the past few weeks. And do I really need to go on, it’s been trauma after trauma. Am I missing anything in that Molly? I’m sure you’re missing things. It’s been an incredibly rough, it’s been a rough year and continues to be rough. I mean, I just saw in the New York times that there was another attempted attack at the Capitol. I don’t know what to say, but I hope that these rough experiences, some of which are not new right, the continuous murder of black people by police officers isn’t new. There’s wider discourse around it now. Racism towards Asians and Asian-Americans is not new. There’s just a deeper understanding of it. And, I hope that all of us facing these issues together, we can come away with this with some movement towards growth. That’s why I’m really loving this podcast that you’ve put together. Yeah. You know, it’s funny. My husband was just on the last episode with me and we aired this, just bits of this longer interview that we did for Yahoo media group. And he told me last week, he was like, I think you’re getting soft. Like you’ve gotten soft towards the end of the season. I was like, no, I haven’t gotten soft. I said, we’re celebrating MS Awareness month together and with our friends. I had to really start this one strong, make sure everyone understands I’m still the fighter that started the podcast. I want to say, I’m extremely proud that through all of this trauma that we’ve experienced, the Incluse This! podcast has brought a diverse and really incredible group of guests together to address so many of the issues that you were just talking about that I stated previously and other issues that we’re facing each day as disabled human beings and as a larger part of our communities and the world. So, the original goal was, and still remains for this podcast is to bring disability to the forefront of the greater diversity conversation. We’ve talked about being disabled enough, why the ADA doesn’t represent inclusion. The fact that disability policies in this country don’t work because they’ve never really been fully funded and implemented, why COVID long haulers are fighting to be recognized by the federal government as disabled joy, as part of resistance, Oppression Olympics within the quote unquote disability community. The question around an impact of disability identity, how powerful, the words and language we use are, tools and resources for disability, allyship, and so much more, Molly, what was your favorite episode this season and why? And you can choose your own. (laughing) Mmmm…Thank you. My favorite episode. Okay. Over the season, I have really enjoyed just on a personal level, seeing the way that you’ve developed and your style has grown to be more conversational. I think those warm conversations that you can elicit bring out just these delightful details that really enrich the stories that you are trying to highlight, and that your guests are highlighting. Awwwww I loved the episode was soon to be Dr. Stephanie Keeney parks. She, she talked about her own experience as a mother of a child with autism. She also talked about the research that she does on autism and the research that she does with families with autism. There was just this great warmth and it was so f***ing human. It was just so human and I loved hearing that. Obviously she’s also my f

    41 min

  2. 03/31/2021

    Incluse This! Episode 11: Your Only is My Everything

    Episode 11: Your Only is My Everything GUEST: Carl Deriso, MS Advocate https://media.blubrry.com/incluse_this/content.blubrry.com/incluse_this/S1_E11_Your_Only_is_My_Everything.mp3 We celebrate Multiple Sclerosis (MS) Awareness Month for 31-days each year; however, close to one million people in the United States are living with the effects of this chronic and debilitating disease each day, including our host and her husband. This week’s episode is a candid conversation between two fellow MS Warriors, who are also married, and there’s no topic off-the-table. Although the diagnosis is the same, everyone experiences MS in very different ways, and this week we discuss personal journeys through diagnosis, dating, marriage, pregnancy, self-help groups, advance directives, and much more. Don’t miss this special episode! #MSAwarenessMonth2021 QUICK LINKS As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability. OUR GUEST: Carl Deriso TRANSCRIPT Hi and welcome to Incluse This! I’m your host, Sarah Kirwan, and this is a movement for disability equity. Today’s show is a bit different. We’re celebrating MS Awareness Month and I’m here with my husband and fellow MS Warrior, Carl Deriso. Good morning, honey. Good morning. We’re celebrating MS Awareness Month, which is in March. I’m excited to have you here today. Welcome. Thank you. We’ve been together for a while now. We got married in August of 2020, and you and I recently did an interview for Yahoo media. One of the things that you and I really wanted to go back to was to talk about the fact that we both have experienced MS in a different way. When we met, I was at a point where I pretty much thought that everything I experienced had to do with MS. And you were at a point where you didn’t feel like most of the things that you experienced had to do with your MS. Let’s take a listen to a little bit of this interview, an edited down version of the original interview that we did together with Yahoo media group. It definitely highlights our experiences and our journeys. My name is Carl Deriso and I was diagnosed with MS 1996. I’m Sarah Kirwan, and I was diagnosed with MS in 2011. I grew up in Arizona and after several summers of the heat there, I started developing tingliness in my feet and my hands and back in 1996, MRIs were not a common thing that were done. I went through the typical spinal taps, went through all the exercises with a bunch of different doctors. Finally they said, we need to send him for an MRI. That’s when I was originally diagnosed with lesions on the spine. But you also had another issue. Yeah, actually I didn’t get very much treatment at all. From that time I just kinda got used to my symptoms. In 2006, I had a flare or a, an exacerbation of my symptoms and had some blurred vision. I went back to a neurologist and they, at that time said, yeah, it looks like you’ve had a, you’ve had an incident, so we need to get you on some medication. That’s when I started, actually using a treatment for MS. And I, actually my initial symptom was my left ear was very full. I got off of a plane in June of 2010 and my left ear just never popped. Or opened. It was just very full. I started going through testing for a vestibular schwannoma, which is a brain tumor that sits on your optic nerve, as well as your ear canal. As they were doing that testing, they found the lesions on my brain. At that time I was actually finishing grad school, which was very stressful. I was ending a long-term relationship at the time, which was also very stressful. I was trying to find a job, after grad school. It was like this perfect storm for me, where I had all of these symptoms presenting in this time-space continuum that they needed to present in for them to diagnose me. After having that first symptom in June of 2010, I ended up finally being diagnosed in February of 2011. I got involved right off the bat because I went to my first self-help group and I walked in and I look very able-bodied, I look very non-disabled when I walk in. So I walked into the room and I was met with a lot of people who had been diagnosed many years before. There’s a difference in medications that were available. There’s a difference in kind of your outlook on the disease at certain ages or when you’re diagnosed, when it presents. I walked in and I was told you don’t look like you have MS. From that point on a, I just started thinking, what am I supposed to look like? And if this is my space where I’m supposed to belong, I don’t feel like I belong. I need to figure out something that’s going to help me feel like I belong so that I can process this. My friend Beth, and I decided that were going to start a young person’s group, self-help group for people in their twenties, thirties, and forties. That was two months after I was diagnosed, yeah. And I, because I had gone so long without any real symptoms, I was an individual who thought, okay, I’ve been labeled with MS, but I really don’t have things that affect me on a day to day, life. I was in a position at work where I had more flexibility with my time. I decided I was going to get involved now and rather than doing money and just kind of signing a check and send it. I wanted to get involved start kind of seeing what was out in that community. I got involved with a self-help group that was about an hour South of where we currently live now, because it was the closest local one and it was an inviting and they had a fair amount of members and it just seemed like it was a good jump into my first step of trying to get involved. That’s ultimately where we ended up meeting, because I ended up being a co-chair for this, for the self-help group. I’m not sure if you were invited up or you decided to come up? Well, I was the director for healthcare access for Southern California in Nevada for the MS. Society. I was really looking at self-help groups and how they were operating, what kind of support we were giving in certain areas. I had requested to come up to their self-help group in Santa Barbara. Of course I walk in and I have like stilettos on and they’re like, okay, who is this? Just relax a little bit, lady. No, when she first walked in, she definitely caught my attention and I didn’t even remember what you were wearing. It was just your energy and your smile. And, so I bought her lunch that day as were doing the presentation. I was like yeah, you can buy me lunch. (laughing) I chased her for like three months. She wouldn’t even give me a date for like three months. It was more difficult because she lived in LA and I was up in Santa Maria where we are now. And so that’s a three-hour commute. Even though I have more flexibility, I still had a full-time job. I was putting in 60 to probably 70 plus hours a week for me. It was a connection that I felt that I want, obviously three hour commute and we had just met and he, and, we had conversation, but I, I definitely wanted to pursue more time with her. I knew that might be difficult, but I was at a stage, 52 now. I was, 50 or 47 or so. I was, I’m at a point now where I want to, I want a companion and a life partner and she’s the perfect one. It was a drive that just kind of kept me going. And, yeah, it, I think the turning moment for me was I was at a position I’d been at for about 17 years. When we first met, she shared with me that she had plans to go to Colorado and I came to her one day and I said, Hey, I want to go with you. I think that decision for me to kind of step away from a very routine environment that I was in, to just pick up and go to another state with her was really the driving moment for me. So… Yeah. I would say that we complement each other very well. I was at a place where I was just kind of done dating, in 2010 when I ended that relationship. I was diagnosed, I think I went into a period of what I call serial dating. It was, it was very difficult because, gosh, it’s like, when do you disclose, how do you disclose, especially when you look like I look and there’s a lot of internalized ableism that comes with, feeling not worthy to be able to express, like I have a disability it’s invisible, but these are what, this is what I experience each day. My reactions from people at first, I didn’t share it because I didn’t really have to, it would be, we would talk in group, do you wait until the third date? Do you wait until the fourth date? Do you disclose on the first date? So I decided, because I’m a data girl, I decided let’s just test the different theories. (laughing) I tried to wait until like two or three dates in and it would be, I had one gentleman say to me, that’s just really not something I can take on, but I want you to know that I’ll be cheering for you from a far. Just like, I was like, I don’t know. I don’t understand that, but okay, thank you. Like, I don’t need your mess here. You know, that would happen. I would get to a point where I would just say it right away. I’ll just be like, let’s just lay it out there because I really don’t want to go through two or three dates. I would lay it out there and then I would find that people really wanted to now men wanted to take care of me. I also didn’t need someone to take care of me. I needed someone to complement what I was going through. Carl and I have very different…Carl’s more structured, low risk. Yeah. I’m more like outside of the structure, like the loud ones. So, so we have a nice balance with that. I think that

    43 min

  3. 03/24/2021

    Incluse This! Episode 10: Dawnia Marie IS Brightside 365

    Episode 10: Dawnia Marie IS Brightside 365 GUEST: Dawnia Marie, MS Advocate, and Founder and CEO of Brightside 365 https://media.blubrry.com/incluse_this/content.blubrry.com/incluse_this/S1_E10_Dawnia_Marie_is_Brightside_365.mp3 March is Multiple Sclerosis (MS) Awareness Month, and we’re celebrating with my very dear friend and fellow MS Warrior, Dawnia Marie. We talk about everything from the pros and cons of self-help groups, to our relationships with providers and celebrating our diagnoses. MS is a debilitating disease, but it doesn’t dim our light. And my friend Dawnia Marie, a true representation of Brightside 365, is an amazing example and reminder for all of us to – keep living! #DisabilityPride QUICK LINKS As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability. OUR GUEST: Dawnia Marie Dawnia Marie was born in Pittsburgh, PA. At the age of 9, she moved to Los Angeles because her father was pursuing his music career. Dawnia resided in Inglewood, CA and graduated from Inglewood High. At the age of 20, Dawnia moved to Atlanta, GA. She received an undergraduate degree in Business Administration from NCCU and a Masters degree in Corporate Finance and Project Management. In 2006, Dawnia’s body went numb from her chest down and in her hands. After a trip to the ER, a neurologist visit, and hours of MRI’s, Dawnia was diagnosed with Relapsing Remitting Multiple Sclerosis. In 2013 Dawnia moved back to California and in 2014 she was taking a class through the MS Society at USC. Through the class Dawnia began volunteering with the MS Society. This lead to being featured in a USC magazine, assisting in the office at the MS Society, being flown to Seattle, Washington to film a resilience campaign video, featured on the cover of the MS Momentum magazine, featured in multiple articles, becoming a District Activist Leader which she visits local government offices, flies to the capitol in California and Washington, DC to advocate for bills that benefit people living with MS and other sicknesses and diseases, was a part of the WeAreIllmatic campaign for women of color diagnosed with MS, an interview with KTLA regarding the Marilyn Hilton MS Achievement Center at UCLA, a video for Yahoo Lifestyles, We Believe campaign video for the MS Society, and asked to participate in a video for the Hilton family. The most important thing was becoming a self-help group leader. Currently, Dawnia is a self-help group facilitator for adults in their 20s, 30s, and 40s for the National MS Society. Seeing a need for a self-help group for teens, Dawnia spearheaded a self-help group for High School students and quickly spread to College Students called MS Youngsters that began in 2017. The MS Youngsters lovingly refer to her as their MS momma. In 2020 Dawnia received the Inspirational Person of the Year Award for the Southern California/ Nevada Chapter of the NMSS. She also received the 2020 L.O.V.E. (Ladies Operating Very Effectively) Overcomer Award. Most recently she received the 2020 Volunteer Inspiration Award. Dawnia is a caregiver for her father who is also diagnosed with MS that is now bedridden. Since he lives in Pittsburgh she coordinates everything by phone, trips back to Pittsburgh to go to doctor’s appointments with her dad, has relationships with every person involved in his care, and family that still lives in Pittsburgh. True to her reputation, she maintained a positive outlook even after her diagnosis. Dawnia knows that God wasn’t bored one day and allowed her to be diagnosed with MS. She knows there is a purpose in every challenge and avoids asking “why me?”. Dawnia’s positivity can be attributed to her ability to see the bright side in every situation. She desires to show people another perspective when life presents seemingly insurmountable challenges. Dawnia is an example of what it means to make the necessary adjustments in order to continue living a fulfilling life. Dawnia is determined to not compare herself to others, but to focus on her blessings and who God designed her to be as she continues to live on the bright side! TRANSCRIPT Today, we’re talking with my very dear friend and fellow Multiple Sclerosis Warrior, Dawnia Marie, and we’re here celebrating MS Awareness Month. Dawnia was born in Pittsburgh, Pennsylvania, and currently resides in Los Angeles, California. She holds an undergraduate degree in Business Administration from NCCU and a master’s degree in Corporate Finance and Project Management She has been featured in MS Momentum Magazine, and several National Multiple Sclerosis Society campaign videos, including living with resilience and we believe. She is also a District Activist Leader, where she works with government officials to promote MS policy and legislation in both Sacramento, California, and Washington, DC. However, Dawnia says the most important thing she’s done was become a self-help group leader. She’s currently the facilitator for the YPG Self-Help Group, which is a group for adults in their 20s, 30s, and 40s. And, seeing the need for a self-help group for teens, she founded MS Youngsters in 2017. This group of high school and college students lovingly refer to her as their MS Momma. True to her reputation, Dawnia does not let MS or anything else stand in her way or dim her light. She has an amazing ability to see the Brightside of every situation, and desires to show people another perspective when life presents seemingly insurmountable challenges. Dawnia is a wonderful friend and example of what it means to make the necessary adjustments in order to continue living a full life. She is determined not to compare herself to others, but to focus on. Her blessings and who God designer her to be, as she continues to live on the bright side!! Good morning, my friend, and welcome to Incluse This! Good morning. Thank you for having me. I’m so happy to have you here today. We’re celebrating Ms. Awareness month together. Woot woot. Yes. Woo Hoo! I feel like it was just March or it’s still March or March never ended. So hasn’t it been Ms. Awareness year? I think so. I really do. I think we shouldn’t have an MS awareness year. I wonder if we can do that. That would be awesome because people need to know. Good question. You were officially diagnosed with multiple sclerosis in 2006, and I believe you were diagnosed when you were living in Atlanta, correct? That is correct. I, I was living in Atlanta and probably should have been diagnosed in 2004, but yeah… Definitely in Atlanta and thank God for my mom. She was like, you need to go to the emergency room. Yeah, thank goodness. As a black woman in America, how would you describe the care that you received from your providers? One of the things that we’ve really talked about are the inequities in healthcare for the black and Brown communities. I’m wondering if you feel that it took longer for you to be diagnosed because you’re a woman of color. Can you talk about some of the barriers that you faced with providers and with the healthcare system during the diagnosis process? I guess for me, it was a little different. My father was diagnosed with primary progressive MS in 2004. When I first started feeling the symptoms or feeling Ms. They, the doctor, had me go do all this testing and all of that. And I was 24 at the time. And, after everything was over the doctor’s like, nothing’s wrong with you? Like, I don’t see anything. I’m like, hmmm. And I said, Mike, I was like, my dad was diagnosed with Ms. He’s like, Oh, that’s what it is like, aha. It’s like, and I’m not going to listen to you. And so my symptoms, they went away. I may have adjusted, I don’t know, but I wasn’t dealing with them. And then, wo years later when my body went numb from my chest down. What was that like? Did you just wake up in the morning? It was like gradual. Like, I really felt it, in like my stomach area and like my hands and, it wasn’t numb like, I’m going to collapse or anything like that, but it was just like a weird sensation throughout my body. I’m like, what is going on? And that’s when my mom’s like, you need to go to the emergency room. And, I went there and they’re like, you need to see a neurologist, but like, so that the diagnosis part of that, like when I went to a neurologist and he had me do like these hours of MRIs and he’s like, yeah, it’s consistent, with MS. I think for me the, treatment after, and this is like, I just had to fight for it. Example when I was in Atlanta, it was, physical therapy. I’m like, no, but that’s what I want to do. It’s more so I just had to keep saying what I want. Even now, like, I have been blessed, I speak up. And so, people haven’t been able to, take advantage or like kinda like she crazy wait, we’re not doing that, but to keep asking. I’ve been fortunate to have a really good, support system, with my doctors and my doctor in Atlanta, she was a black woman. She’s a, MS Specialist. It was, I was a little concerned about leaving her in Atlanta cause I’m like, Oh, no I’m about  to go to people that don’t care. I find this amazing neurologist right now, who I, we joke because another friend of mine goes to her and she’s like, I’m not messing around one day and say, I love you. I was like, I know, right. We’re ending. I was like, okay, I’m not going to make it awkward. Say, I love you. Yeah, I, but I’m grateful for that. I don’t want to, bash, the doctors or anything, but it’s like actually have a good experience, but also

    45 min

  4. 03/16/2021

    Incluse This! Episode 9: It's a Love-Hate Relationship

    Episode 9: It’s a Love-Hate Relationship Wednesday, March 17, 2021 GUEST: Molly Bloom, PhD, Inclusive Design Researcher, Adobe https://media.blubrry.com/incluse_this/content.blubrry.com/incluse_this/S1_E9_It_s_a_Love-Hate_Relationship.mp3 I’m thrilled to have my very dear friend and colleague, Dr. Molly Bloom, back on the show to explore our relationships with medical providers, in the context of inaccessible structures. How do we, even momentarily, balance the power differential? Our medical records impact our ability to receive services, so why aren’t they easily accessible and amendable? When immune compromised people are dying of COVID at the same rate as those aged 75+, why are we deprioritized? If getting the best care comes only because we’ve advocated for ourselves, have we made advocacy the thing that determines our best care? We are pondering these questions and more this week, so don’t miss out! QUICK LINKS As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability. OUR GUEST: Molly J Bloom, PhD Molly has felt an affinity for and responsibility to the disability community since sustaining a life-changing injury as a teenager in 2006. Since then, she has co-founded the only women’s wheelchair basketball team in California, completed a PhD drawing on anthropology and disability studies, and learned from her friends and peers that disability community always involves sharing knowledge, advocacy, and living joyfully. In her doctoral studies at UCLA, Molly brought together critical perspectives on race, class, and disability community. Her research, funded by the National Science Foundation among other organizations, was recognized for its commitment to diversity when she was inducted into the Edward A. Bouchet Honor Society in 2018. She has authored publications on topics ranging from adaptive athletics, to disability in the Middle East, to Brazilian Sign Language. Recently, Molly has relocated to home of the American Disability Rights Movement, the Bay Area, where she is busy working as an Inclusive Design Researcher for Adobe and soaking in the activist milieu. She thrives on connection and collective growth and longs for the day when she can build joy in-person with her disabled kin. TRANSCRIPT Hi and welcome to Incluse This! I’m your host, Sarah Kirwan, and this is a movement for disability equity. Today, we’re talking with Dr. Molly Bloom, and we’re talking about the love-hate relationships we have, including those relationships with our medical providers. Molly has felt an affinity for and responsibility to the disability community since sustaining a life-changing injury as a teenager in 2006. Since then, she has co-founded the only women’s wheelchair basketball team in California, completed a PhD drawing on anthropology and disability studies, and learned from her friends and peers that disability community always involves sharing knowledge, advocacy, and living joyfully. In her doctoral studies at UCLA, Molly brought together critical perspectives on race, class, and disability community. Her research, funded by the National Science Foundation among other organizations, was recognized for its commitment to diversity when she was inducted into the Edward A. Bouchet Honor Society in 2018. She has authored publications on topics ranging from adaptive athletics, to disability in the Middle East, to Brazilian Sign Language. Recently, Molly has relocated to home of the American Disability Rights Movement, the Bay Area, where she is busy working as an Inclusive Design Researcher for Adobe and soaking in the activist milieu. She thrives on connection and collective growth and longs for the day when she can build joy in-person with her disabled kin. We’re more than halfway through this season. And I’m so thrilled to invite my very dear friend and colleague Dr. Molly Bloom back to the podcast today to talk with us about this very layered relationship we have with the inaccessible structures we live within. I am like super happy for us to be back here today to have this conversation. I woke up this morning angry and agitated, and started my day with the news, which is never really a good thing at 6:30 in the morning on a Saturday. However, I started off going through Twitter and I was reading some of the messaging around the vaccine rollout. I just think that as we’re going to launch into this conversation around, it’s a love, hate relationship. Although it was intentionally set up to be a conversation just specifically about provider and patient relationships. There’s a lot of love, hate relationships going on right now for people within the disability community. And to touch on that, a little bit, on March 15th in the state of California, people with auto-immune issues, weakened immune systems, they will be able get the vaccine starting on Monday in California. And a friend wrote me a text message. She said, I just wanted to give you a heads up. There was, this was very sweet that she did. I want to give you a heads up that on Monday, you can start enrolling to get your vaccine shots. It just set me off on this whole tangent about ableism. Also, I saw, a tweet this morning about people getting backlash from the community because they got their vaccine. They have a weakened immune system or auto immune compromised got their vaccine before so-and-so having to prove that you actually deserve or are worthy of getting your vaccine even on Monday in California, when we’re able to be able to get the vaccine, we have to actually show a doctor’s note. So, there’s kind of a love, hate relationship going on with a lot of things in our lives right now. What are your thoughts on that? Yeah, I similarly share a lot of frustration with the vaccine rollout and the one thing that frustrates me, the one thing that is the most pertinent for me at the moment is the fact that people with a disability or health conditions that make them at higher risk of having a really severe, experience with COVID or dying of COVID have been not prioritized earlier. The data that I’ve seen suggests that people who do have underlying health conditions that puts you at higher risk, such as, auto immune disease or some types of disabilities. Those folks are dying at equally high rates as people who are 70 and older, if not higher. So, it baffles me why this hasn’t been, an earlier priority for the States. I don’t have any other way of understanding it except to think of the state’s logic. And I know California, this is, and when I say the state, I’m talking about California, because that’s where I’m most familiar with the vaccine rollout. But essentially it says to me that the state’s logic is well, people who are disabled or ill, it just makes sense for them to have to stay at home. It just makes sense for them to be de prioritized, compared to other groups of people. And, I think there’s a really troubling logic about that. So, I’ve spent many hours very pissed about the vaccine rollout. As many people are… As many people are. I, I, I think this whole thing goes back again to the ablest messaging. Let’s just keep disabled people inside. What, if you’re vulnerable, just don’t go out. And the other community, the larger community is somehow okay with that. Like that makes sense to them. Okay, you continue to stay in your home because we don’t want to prioritize you for this vaccine. And initially, when it was supposed to be rolled out in California, it should have been 75 plus people with underlying health conditions. And that was changed in California. In addition to that, not only that deep prioritization of disabled people, but also back to what you said about death rates being at the same level of 75. Plus that also goes back to the provider patient relationship because providers are the ones making the decisions in devaluing lives, human, disabled, human lives, and not giving them the care that they need because they see their quality of life as much lower than we would say our quality of life is. Yeah. And there’s probably some providers who are doing a really excellent job to advocate for their patients. The problem for me is that they have so much power to make that determination when the entire field of medicine, okay. That is way overgeneralizing, but parts of the field of medicine, as we know it in the U S are driven by the logic that disability should not exist and the best way to, have a high value of life is to not have a disability. So, when that, that is the ethos that you’re indoctrinated in. You get to make, you have the power to make decisions about people with disabilities. That’s really troubling, and that’s not even touching this. This is not even touching all of this racial inequities with the vaccine rollout, which, are deeply troubling… Deeply troubling. Right? Black and Brown people are dying at such high rates and people who don’t have access to, people who don’t know how to fight with their providers, or they live in a system in which even if they are really good advocates, they are, their voices are seen as less valuable like that. That is just building…that’s just… That’s just wrong. Yeah, that’s just reinvigorating the inequities. And I think what you said, it goes back to power. There are so many layers when we look at the relationship between a patient and a provider. Academic-wise, providers, medical providers, aren’t taught that social empathetic, caring side. It’s more curing. It’s more of the body a

    43 min

  5. 03/10/2021

    Incluse This! Episode 8: Despite the Barriers, There's Joy

    Episode 8: Despite the Barriers, There’s Joy Wednesday, March 10, 2021 GUEST: Stephanie Keeney Parks, PhD Candidate Department of Anthropology | University of California, Los Angeles https://media.blubrry.com/incluse_this/content.blubrry.com/incluse_this/S1_E8_Despite_the_Barriers_There_s_Joy_Stephanie_Keeney-Parks.mp3 Stephanie Keeney-Parks joins us this week to discuss all things Autism. As a scholar, academic, and researcher, and mother of a son diagnosed with Autism, she shares her unique perspective and insights with listeners. We talk about the multiple layers of oppression that children of color face in this country, and what it means to have joy despite all of those barriers. Don’t miss this incredible conversation and learning opportunity! QUICK LINKS As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability. OUR GUEST: Stephanie Keeney Parks Stephanie is a doctoral student at the University of California, Los Angeles, in the Department of Anthropology, where she studies medical/psychological and linguistic anthropology. She also holds a master’s degree in medical anthropology from Creighton University, in Omaha, Nebraska. Stephanie’s research centers on the everyday lives of Black parents who have children with autism. She is also interested in the process of diagnosing a Black child with autism, as well as the healthcare disparities these families face. Stephanie is interested in centering the Black parent’s narrative and experience as the expert to decenter white ideologies on health, healthcare, disability, and Black culture. Her research stems from her experience as a Black woman, wife, and mother of two children. Stephanie’s oldest child is diagnosed with autism. TRANSCRIPT Hi and welcome to Incluse This! I’m your host, Sarah Kirwan, and this is a movement for disability equity. Today, we’re talking with Stephanie Keeney-Park, and we’re talking about uplifting and amplifying the voices of disabled women. Stephanie is a doctoral student at the University of California, Los Angeles, in the Department of Anthropology, where she studies medical/psychological and linguistic anthropology. She also holds a master’s degree in medical anthropology from Creighton University, in Omaha, Nebraska. Stephanie’s research centers on the everyday lives of Black parents who have children with autism. She is also interested in the process of diagnosing a Black child with autism, as well as the healthcare disparities these families face. Stephanie is interested in centering the Black parent’s narrative and experience as the expert to decenter white ideologies on health, healthcare, disability, and Black culture. Her research stems from her experience as a Black woman, wife, and mother of two children. Stephanie’s oldest child is diagnosed with autism. Good morning, Stephanie Keeney parks, and welcome to Incluse This! Can you believe that we’re here? I’m so excited. Thank you for having me. I’m so excited. I remember the first time we spoke was at the very beginning of my planning period for this podcast, when it hadn’t really been fully created and I still pretty much had no idea what I was doing, but I, I remember that we had a really great conversation that day with you and I and Dr. Molly bloom. And a few things come to mind when I think about that first conversation. The the main thing that comes to mind for me is this laundry list of systemic barriers facing children of color in this country that I basically read off to you, which was like, yes, obviously Stephanie already knows these things, but I’m very grateful that you were one of my very initial conversations because you were so gracious and you taught me so much and educated me on so much. And, I really appreciated that conversation that we had. Hey, right on. I’m glad it was helpful. It was! This list that I read off to you included medical diagnoses delays, lack of access to resources, negative experiences with safety officers in schools, healthcare, financial inequities, systemic racism, inflamed relations with police officers as adults. I mean, the list just goes on and on. What sticks out for me most is that you said, you know what, Sarah, despite all of that, I really want people to know that we still have joy that despite all those barriers, we still have joy. Hence the name of this podcast episode. Oh, right on. That’s great. I mean, we live in it all the time. It’s part of the resistance, right? Yeah, yes. Yes. And that relationship between joy and resistance. I love that. We’re going to talk about that later in the episode, but I think we should start at the very beginning of your experience with your son who is diagnosed with autism. That was something that we started our conversation with. Yeah, sure. Like most folks don’t really think about disability because we live in such an able-ized and stigmatized society or enabling and stigmatizing society until it’s like near you. Right. My son, having autism clearly changed my world, for the absolute better. Like most people, I struggled getting a diagnosis for him. I knew that he had autism. He was four and not potty trained and not speaking, having some pretty serious tantrums, is inconsolable had some, like really typical what would be autism traits that would be diagnosable. Right. For us, I remember my husband had deployed to somewhere and it was Christmas. And, I was just in tears because for me when, that when Del would tantrum and I couldn’t console my baby. Right. Like I couldn’t make him okay. I couldn’t make him happy. I didn’t know how to calm him down. That was just awful. He wasn’t okay. That’s just not sustainable for me or, for most parents, I also couldn’t get our pediatrician to diagnose him and I couldn’t get the school district to diagnose him. The school district actually called me and was like, we can’t get him to get, sit in a chair. We don’t know what to do with this little kid, et cetera. He was in preschool and, had some like global delay and speech delay type diagnoses, but not an autism diagnosis. I just knew that was what I was looking. I went to the base hospital where were stationed and I, and when you go to the hospital, they give you a little sheet of paper and ask you if you will harm yourself or, you need help in an immediate way. And I marked yes. Because I knew they’d take me immediately to a psychologist. I brought my son with me and I, I walked in to the psychologist. They said, what’s wrong. We got, are you okay? I said, I’m absolutely not okay. Can’t get anybody to pay attention to the fact that my child has autism and I need you to listen to me. That’s kind of how our diagnostic process started. Like a lot of folks, when your kid is diagnosed with autism, they’ll tell you things like, they just tell you so much silliness. I think a lot of parents, because we live in such an ableist world, we don’t quite understand what we’re looking at and it, when it comes to disability and you start from this framework of cure, the kid, cure the kid, you know what I mean? Like, where are the resources to cure this kid? And, as you kind of move through the process of learning about a diagnosis and thinking about like what it means to take your child to therapy and what are you really trying to do with your child in therapy, and how does this shape your relationship with your child and their relationship with the larger world and those types of things. You just kind of, or think you should maybe have kind of a switch in how you understand your child. For our family, it went from, Oh my God, it’s an autism diagnosis. Like this autism thing to just, this human in front of us is beautifully and perfectly created in the exact way he is. And it’s, you know, he’s wonderful. He’s great. Well, except for he’s turning 16 and he smells bad sometimes. Autism didn’t make my kid awful. Right. Like, and I think that’s important to like keep in the framework because I think I, people apologize to me when they hear my kid has autism. Right. I actually asked, have you ever met him? If you met my son, you would never apologize for who he is. He’s, he’s great. He’s just a great human, you know, I love that. We actually have talked about that on the podcast. In another episode, I can’t remember which one about people’s reactions when we talk about diagnoses and that it’s usually, I’m so sad for you. Yeah. I was talking about how I just kind of sprinkle it in it’s part of my day to day. I’ll say it and move on, but people are stuck on that diagnosis and feeling sad and can’t kind of move out of that space to join us in the rest of the conversation. And also like disability is not awful like that does not ruin my life. You know what I mean? Like it just, he’s lovely and wonderful as anybody else here. I mean, like, and it’s a thing, and it’s a particular thing when you’re like couple it with the racialized experience of being black or raising a black child in the United States, raising a black, disabled child in the United States of black male disabled child, right. Like all the intersections start to come into play and that’s, what makes disability difficult in my world is that I’m navigating ableism and racism in like one smush at times, right? Like not just this kid can’t, we can’t get him to sit in a chair it’s that they perceive him as violent and aggressive and scary. And he’s just

    48 min

  6. 02/23/2021

    Incluse This! Episode 7: Amplifying Voices of Disabled Women

    Episode 7: Amplifying Voices of Disabled Women Wednesday, February 24, 2021 GUEST: Alannah Murray https://media.blubrry.com/incluse_this/content.blubrry.com/incluse_this/S1_E7_Amplifying_Voices_of_Disabled_Women_Alannah_Murray_Final.mp3 Our guest this week is disability advocate and postgraduate researcher, Alannah Murray. She brings insights and experiences from Ireland to our conversation about uplifting the voices of disabled women around the world. We explore the relationship between feminism and disability. And discuss reproductive health rights and social inclusion of disabled people, the inclusion of disabled people in LGBTQ+ spaces, and much more! QUICK LINKS As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability. OUR GUEST: Alannah Murray Alannah Murray is a disability advocate and postgraduate researcher living in Ireland. Her advocacy mainly focuses on key social issues such as social inclusion of disabled people, reproductive rights and promoting greater inclusion in LGBTQ+ spaces for disabled people. She holds a bachelor’s degree in film and television production and is currently writing a master’s thesis on Disability and Culture in Film. She is the co-founder of Disabled Women Ireland, and in 2019 completed a placement in Washington, DC, as part of the Washington Ireland Program; a program aimed at engaging young leaders across the island of Ireland. She started her activism journey in her second year of college, while researching her award winning documentary Roll Camera, a documentary exploring representation of disabled people in Irish Film (which you can find here). She has campaigned extensively for equal accessibility to transport, greater funding for students, the need for inclusive education and reproductive healthcare for disabled people. She delivered a TEDx Talk on Disability and Social Inclusion (which you can find here) , and has delivered numerous workshops on Disability & Sexuality, as well as the need for greater accessibility for disabled people in LGBTQ+ spaces. TRANSCRIPT Sarah Kirwan Hi and welcome to Incluse This! I’m your host, Sarah Kirwan, and this is a movement for disability equity. Today, we’re talking with Alannah Murray and we’re talking about uplifting and amplifying the voices of disabled women. Alannah Murray is a disability advocate and postgraduate researcher living in Ireland. Her advocacy mainly focuses on key social issues such as social inclusion of disabled people, reproductive rights and promoting greater inclusion in LGBTQ+ spaces for disabled people. She holds a bachelor’s degree in film and television production and she is currently writing a master’s thesis on Disability and Culture in Film. She is the co-founder of Disabled Women of Ireland, and in 2019 completed a placement in Washington, DC, as part of the Washington Ireland Program; a program aimed at engaging young leaders across the island of Ireland. She started her activism journey in her second year of college, while researching her award winning documentary Roll Camera, a documentary exploring representation of disabled people in Irish Film. She has campaigned extensively for equal accessibility to transport, greater funding for students, the need for inclusive education and reproductive healthcare for disabled people. She also delivered a TEDx Talk on Disability and Social Inclusion and she has delivered numerous workshops on Disability & Sexuality, as well as the need for greater accessibility for disabled people in LGBTQ+ spaces. Sarah Kirwan Welcome to Incluse This! Alannah. I’m really, really excited to have you and I’ve really been looking forward to our conversation. Thanks for having me. Sarah Kirwan I love your accent, too. So, if I just stop and listen to that, everyone will know why. ha. I think the first time we talked, I said that too. Oh, it’s so soothing. One of the reasons I’ve really been looking forward to having this conversation with you is because the areas that you work in are areas that I really want to and need to learn more about. So, we have limited time and I just want to dive in because we have a lot to cover. One of the areas that you focus on is the connection between feminism and disability. And, I want to read a quote from Buzzfeed contributing writer, Lucy Webster in her article titled the Politics of being me. I have a university seminar on gendered security to thank for one of the biggest epiphanies I’ve had about myself or rather about the politics of being me. In the midst of a heated debate about how gender is used to control people’s movements. Sarah Kirwan Suddenly it hit me so much of modern feminism relies on the ideal of female bodies that work as expected. For me and lots of other disabled people, that’s a model we simply don’t fit. I’m a lifelong feminist and disability activist yet it took until that very moment for me to see that I am not simply a woman and disabled. I am a disabled woman that well-known feminist rallying call. The personal is political suddenly took on new meaning. I realized that things that had always seemed to mere facts of life like inaccessible shops or restaurants that didn’t provide a disabled toilet are obviously exclusionary. That every time someone is patronizing to me say, or assumes, I am unable to read, they are not just making unfounded assumptions about the clinical nature of my disability. They are also labeling me as different as abnormal. Nothing could be possibly more political than applying these labels, not just to me, but to a whole group of people who are consistently devalued and dehumanized and feminism showed me how I should respond to this by asserting my humanity and being proud of my differences. Sarah Kirwan Alannah, can you explain the connection between feminism and disability for us? And talk about your own experiences with both of them and what this writer is referring to? I’ll do my best. So, basically I suppose from my perspective, I’ve always kind of connected the two because, I can’t be disabled and a woman separately. Like I am a disabled woman and everything, comes back to my disability and my womanhood really like, the idea that, we’ll grow up and get married and have babies, but as a disabled woman I’m told, that I’m not supposed to do any of those things, like I’ll never find someone that, would take me on. If they do, they’re a Saint and heaven forbid, I should have kids, because disabled people are seen as a burden and women are seen as that. They take on the burdens of their husbands and it’s their job to be the person that’s the person that’s there that does all , that does all the cooking, the cleaning, and really carries the house. At least in Ireland anyway, we’re still a very kind of patriarchal country. I think for me, it was really important as a young woman to really challenge those ideas. Really I got into kind of disabled feminist activism, during Ireland’s fight to repeal our abortion laws. Basically abortion was illegal because the Catholic church still very much has, or had at least control over most of our Ireland or most of its like education and healthcare were very religiously based. That is so interesting and really leads into my next question for you, which is the work that you do around reproductive rights. This is such a broad term. So, I’ve done a lot of research around that and on what that means as an issue for disabled women. I would just want to read this abstract from an article that, or excuse me, it was a study that’s titled Disabled Women and Reproductive Rights, and it was conducted by Virginia Kallianes and Phyllis Rubenfeld. The abstract states, both the women’s and disability rights movements have paid scant attention to the concerns of disabled women, especially involving sexuality, reproductive freedom and mothering. Although their concerns may seem opposite of the women’s movements, primary agenda, they are based on the same position. Women must not be defined solely by biological characteristics and have the right to make decisions about their bodies and lives. Disabled feminists often support reproductive rights, but also have different perspectives on abortion and reproductive technologies than non-disabled feminists. The literature indicates that the reproductive rights of disabled women are constrained by the assumption that disabled women are asexual, which you just mentioned, the lack of reproductive healthcare, contraception, and sexuality information, and social resistance to reproduction and mothering among disabled women. Disabled women are at risk for a range of undesirable outcomes, including coercive sterilization, abortion, or loss of child custody. What does this mean for the day to day life of a disabled woman? Can you explain that in plain language? So we can really understand what we’re talking about and why it’s important to educate that we educate on this area of activism. So, I first started working, in this in this, kind of the, this space where were fighting against… Nobody was allowed abortions. People were getting on a plane and flying to the UK to have their abortions. There was 12 people a day flying to the UK to get an abortion, access and healthcare in a different country. We noticed that nobody was talking about disabled women. Like they were disabled people in general. I don’t like to use the word women in this kind of case because not everyone that needs an abortion as a woman. Nobody was really talking about disab

    45 min

  7. 02/17/2021

    Incluse This! Episode 6: Is COVID-19 a Disability?

    Episode 6: Is COVID-19 a Disability? Wednesday, February 17, 2021 GUEST: Marjorie Roberts, DBA | Certified Life Coach and Speaker https://media.blubrry.com/incluse_this/content.blubrry.com/incluse_this/Incluse_This_S1_E6_Is_COVID-19_a_Disability_Dr_Marjorie_Roberts.mp3 In this episode, Dr. Marjorie Roberts shares her personal insights and experiences as a COVID-19 Long Hauler. And we discuss why she’s pushing so hard for COVID-19 to be recognized as a disability. With her life turned upside down in a matter of hours, she’s spent the last 12-months advocating for herself and others in the COVID-19 Community. She says, “We’re on a mission to be heard. And COVID-19 is a disability. This is the bottom line.” QUICK LINKS As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability. OUR GUEST: Marjorie Roberts, DBA Greetings and thanks for taking the time to find out a bit more about me. 1st and foremost I am a Covid-19 Long-hauler/Survivor/Advocate. My name is Dr. Marjorie Roberts. My husband and I recently relocated to Johns Creek, Georgia after calling Philadelphia, PA home for over 30 years. I gave birth to my very best friend Leanne who decided to relocate shortly after. I have a Doctorate in Business. Interacting with people throughout the years, I have come to understand something very fundamental, regardless of backgrounds or current situations people are looking to survive and thrive as human beings. With a strong business background in both the retail and restaurant industries, I have always focused upon an individual’s personal growth and happiness. My skills of providing structured questions to help organize an individual’s thoughts and excellent critical thinking skills for helping others set tangible objectives, have been thrust to the forefront in recent years and led to a career change to my becoming a Certified Life Coach. As a life coach contracting Covid-19 has meant personally I have to face some hard truths about my total existence and how I must now take the form of a realistic assessment of my life and how I can help others as we recover from Covid-19. As an active member of several grassroots group Covid 19 Survivor groups, my approach is life coaching is not a do this and that will happen concept for me; it is a reaching deep, planning and allowing myself and others to come through and out of this experience whole and complete as possible. TRANSCRIPT Sarah Kirwan: Hi, and welcome to Incluse This! I’m your host Sarah Kirwan, and this is a movement for disability equity. Today we’re talking with Dr. Marjorie Roberts, and we’re talking about COVID-19 and disability.   Sarah Kirwan: Greetings. Thanks for taking the time to find out a bit more about me first and foremost, I am a COVID-19 long holler survivor and advocate. My name is Dr. Marjorie Roberts, my husband and I recently relocated to Johns Creek Georgia after calling Philadelphia, Pennsylvania home for over 30 years, I gave birth to my very best friend, Leanne, who decided to relocate shortly after I have a doctorate in business and interacting with people throughout the years. I have come to understand something very fundamental that regardless of backgrounds or current situations, people are looking to survive and thrive as human beings with a strong business background in both the retail and restaurant industries, I have always focused upon an individual’s personal growth and happiness, my skills of providing structured questions to help organize an individual’s thoughts and excellent, critical thinking skills for helping others. Set tangible objectives have been thrust to the forefront in recent years and led to a career change to my becoming a certified life coach.   Sarah Kirwan: As a life coach contracting COVID-19 has meant personally, I have to face some hard truths about my total existence and how I must now take the form of a realistic assessment of my life and how I can help others. As we recover from COVID-19 as an activist member of several grassroots COVID-19 survivor groups. My approach is that life coaching is not a do this, and that will happen concept. It is a reaching deep planning and allowing myself and others to come through and out of this experience whole and complete as possible. Yeah, let’s just get started. I just want to say Marjorie. Hello and welcome to include this. I’m thrilled. You’re here. I’m really passionate about this conversation that we’re going to have about the relationship between the COVID-19 community and the disability community, and really, how can we embrace one another and support one another? And so I’m really happy that you’re on today because it’s such a curious question for me.   Sarah Kirwan: I was just doing more research this morning and came across an article that says at this point, the COVID-19 has not been designated as a disability under law. Before we dive into all of that, I just want you to share with us your story.   Dr. Marjorie Roberts I’m quickly approaching my 11th month of COVID-19. My first symptom was March the 26th. As you can see, March the 26 is just a few weeks away. From the 26 on to this very day, my life has forever changed. I don’t have the stamina that I used to have. I’m not able to do a lot of things that I used to do, and the way that I look at it now, I always say, mentally, I’m in a really good place physically I have to catch up. So my mind is sharp. I’m so thankful that my mind got saved in this thing. COVID-19 is really dark and scary. If you don’t do everything you can to protect your mind, it’ll go. If your mind goes, then everything else is gonna follow. That’s vice versa with the healing process. Now that I got my mind in the right place, I’m just doing everything that my awesome team of doctors are telling me to do.   Dr. Marjorie Roberts For COVID-19 again I say, it’s definitely not a hoax. It changed my life in one day that morning I woke up on March 26. I was fine. I was functioning fine. I was, I was living my life like it was golden. By the time the sun went down little did I know that almost 11 months later, I would still be dealing with the after effects of the storm of COVID-19.   Sarah Kirwan Yeah, that’s incredible. What are some of your day to day symptoms? Can you go back to that day? I mean, I feel like it’s been March for a year. To be honest, it’s like March never ended.   Dr. Marjorie Roberts Yeah. Like Groundhog day. Definitely.   Sarah Kirwan Yes, but you’ve been doing much more Marjorie since you were first diagnosed with COVID and you had an experience before you were diagnosed. Like, can you share with us that experience with providers that you had?   Dr. Marjorie Roberts Yeah, that was again, I did not see that coming, but COVID-19 when I first contracted COVID-19 early back in March, it was new. I get to the emergency room, it was like something out of a horror movie. Everybody was PPE’d up, everybody was all messed up and, they had a special section for people like myself with these symptoms that I had been going through, which was diarrhea, really bad nightmares, loss of balance, no appetite, spinning dizziness, nothing down, couldn’t function, and all of that going on at one time, it was a storm growing in my body. I get in the emergency room the first time, tell them everything right away. They’re like, Oh, okay, well, we’re going to do what we do when you come to the emergency, they check you for check your heart, checking lungs and everything like that. And I was just so sick.   Dr. Marjorie Roberts I was dehydrated. I was dry. I was totally dry. They, they caught that right away and they hooked me up to the app and everything. They were just doing a series of tests so fine. They come in and he’s like, well, you’re going to have to take COVID-19 tests. Now, mind you, this is early April and the only thing I knew about this COVID test is what I saw on television or what I seen on the internet or how it looks like this extra-long Q-tip that they were just sticking up the nose. To make a long story short, I went through that process. They done that. They just did one nostril. Back then, I didn’t know any better. Did the one, the results came back and they told me, Oh, well you have upper respiratory infection. You don’t have, COVID go home drink plenty of water, stay hydrated, take Tylenol if need be. You’ll be just fine.   Dr. Marjorie Roberts I left the hospital that night, thinking like, okay, this is, I can deal with this. That was not true. From that point on, from April 4th I continued to get even sicker, I just began to just explain that COVID-19 was just revving in my body just totally taking over. I couldn’t walk by myself. I couldn’t, my husband had to help me from point A to point B. I had no energy. I felt like somebody had just took a vacuum cleaner and sucked the life out of me. The diarrhea was going crazy. The hallucinations. The nightmares. It was just a lot going on. So May 28th I get sick. I get real sick. My husband was like you got to get out. They take that to the emergency room for the second time. The second time was worse than the first time, because they were like, look, you were just here, April 4th.   Dr. Marjorie Roberts We told you nothing’s wrong with you, you need to contact your primary physician. Stay hydrated. We’re not going to test you for COVID now because we told you did have it. And I’m like please help me. Help me. I’m crying, Help me. They g

    46 min

  8. 02/10/2021

    Incluse This! Episode 5: Will the Cripples Save You?

    Episode 5: Will the Cripples Save You? Wednesday, February 10, 2021 GUEST: Charis Hill, Writer, Speaker, Model, Being Charis https://media.blubrry.com/incluse_this/content.blubrry.com/incluse_this/Incluse_This_S1_E5_Will_the_Cripples_Save_You_Charis_Hill.mp3 Throughout the past year, the COVID-19 pandemic has been the impetus for bringing the term ableism to mainstream conversations. In this episode, Charis Hill and I discuss the messaging we’ve been confronted with, the actions we’ve witnessed, and the structures in-place that devalue and destroy disabled human lives. QUICK LINKS As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability. OUR GUEST: Charis Hill Award-winning advocate for the spondyloarthritis community since 2013, Charis is a queer disabled writer, speaker, and model living with Axial Spondyloarthritis, Major Depressive Disorder, Anxiety, Post-Traumatic Stress Disorder, and Autism. Charis has been instrumental in the creation and design of spondyloarthritis disease treatment guidelines, patient-centered rheumatological research, international criteria for disease treatment outcomes, and research guidelines. They are consistently involved in national/international awareness and legislative advocacy efforts to improve spondylitis education, funding, and access to treatment. Charis serves on the Spondylitis Association of America advocacy committee and the CreakyJoints/Global Healthy Living Foundation (GHLF) Patient Council and COVID-19 Patient Leadership Council. They have spoken at numerous events and press conferences, as well as regularly with members of Congress on Capitol Hill. Charis has modeled in Los Angeles Style Fashion Week and New York Fashion Week and they’re featured on covers of Féroce magazine, Arthritis Today, and Spondylitis Plus Magazine. Their bylines appear in HealthCentral, Healthline, Business Insider, AnkylosingSpondylitis.net, and This AS Life; including cover stories for Arthritis Today and Spondylitis Plus magazine. Charis’ story has been featured numerous times in mainstream news and lifestyle media, including the 2019 documentary, Becoming Incurable. TRANSCRIPT Sarah Kirwan: Hi, and welcome to Incluse This! I’m your host Sarah Kirwan, and this is a movement for disability equity. Today we’re talking with Charis Hill, and we’re talking about all the different ways the coronavirus has impacted and continues to impact the disability community. Award-winning advocate for the spondyloarthritis community since 2013, Charis is a queer disabled writer, speaker and model living with axial spondyloarthritis, major depressive disorder, anxiety, post-traumatic stress disorder and autism. Charis has been instrumental in the creation and design of spondyloarthritis disease treatment guidelines, patient-centered rheumatological research, international criteria for disease treatment outcomes and research guidelines. They are consistently involved in national and international awareness and legislative advocacy efforts to improve spondylitis education, funding and access to treatment. Sarah Kirwan: Charis serves on the Spondylitis Association of America advocacy committee, the CreakyJoints Global Health Living Foundation, patient council, and the COVID-19 patient leadership council. They have spoken at numerous events and press conferences, as well as regularly with members of Congress on Capitol Hill. Charis has modeled in Los Angeles Style Fashion Week and New York Fashion Week, and they’re featured on covers of Feroce Magazine, Arthritis Today and Spondylitis Plus magazine. Their bi- lines appear in HealthCentral, Healthline, Business Insider, ankylosingspondylitis.net and This is AS Life. Including cover stories for Arthritis Today and Spondylitis Plus magazine. Charis’s story has been featured numerous times in mainstream news and lifestyle media, including the 2019 documentary Becoming Incurable. Sarah Kirwan: Hi Charis, and welcome to Incluse This! I’m so excited to have you here today to talk with us about the coronavirus and how it has impacted the disability community and each one of us within that community. This is something that I’ve been researching and talking about for the last year. During my research I found your article, the cripples will save you on creakyjoints.org. After reading your article, I knew that I had found the guest for this episode. I just fell in love with the truths you were sharing and the candor with which you shared them. I then proceeded to stalk you with emails for a couple of weeks. Charis Hill: Oh, I’m used to that. Hi, thanks for having me. I do want to mention, you said Charis, which is one of multiple correct pronunciations of my name. So anybody listening, Sarah actually used the correct pronunciation. We can talk about that another time. Sarah Kirwan: Thank you. Perfect. When we had our first call, we talked about everything from COVID messaging and masks and medical rationing, and do not resuscitate orders, to COVID relief measures and vaccines. Today we’re going to cover all of these, which is quite a bit so I want to get started. The title of this podcast episode is will the cripples save you? Which is basically the same name as the title of your article? I switched around a few things and added a question mark. But the original title of your article is the cripples will save you, a critical coronavirus message from a disability activist. In the article you write, “Do you really want a bunch of cripples to save you again? My friend Don Gibson wrote this in a recent Facebook post about being a chronic illness and disabled activist in the age of the coronavirus outbreak or COVID-19. I can’t stop thinking about her sentence, I can’t. Sarah Kirwan: It grabbed me hard in the gut and wouldn’t let go. Before I keep going, let me say the word cripple is an ableist slur. Many of us disabled activists choose to reclaim that word from time to time, to illustrate the labor we do as people who regularly fight society’s barriers to our full participation in the world. I don’t recommend using the word cripple if you aren’t disabled.” I love that last part that you put on there, I don’t recommend using the word cripple if you aren’t disabled. I have to tell you and our listeners, I remember the first time I heard this term used and I was playing wheelchair basketball. Sarah Kirwan: I was like, “Wait, you guys can’t use that word, that sounds horrible. Seriously you definitely can’t name your basketball team that.” With their responses, I learned some really valuable disability lessons from these friends. Today I hope our listeners will learn some very valuable lessons about the incredible emotional and physical weight that disabled people have been carrying and continue to carry throughout this pandemic. As Jourdan Saunders and I discussed in our episode two weeks ago, words are powerful. Would you like to anything to that Charis? Charis Hill: I agree words are absolutely powerful. I just want to mention that when I wrote that piece that you read an excerpt from, I was just reeling from the let’s see, from the vernacular that people were using to describe the pandemic. It’s only going to affect old people or people with underlying conditions. That first part you read, every time that I hear it read again or I read through it again I’m just reminded of the anger that I felt in that moment, and the desire for people to just hear the disabled community. Which speaks to what you said, that incredible emotional and physical weight that we carry and continue to carry. Sarah Kirwan: I think that, I don’t know if you know this, but one of the reasons why I started this podcast, one of the catalysts actually for starting this podcast was when I heard that phrase. We’re going to talk about that a little bit more, but the fact that no one recognized that as an ableist term from the get-go was shocking to me. In May of last year, Rolling Stone published an article about a now former chairman of a planning commission in Antioch, California. His name is Ken Turnage. He was ousted after he publicly expressed his endorsement for culling the herd on a personal Facebook post. I’m just going to take a moment and read his obviously now deleted post for our listeners. This is it. “The world has been introduced to a new phrase, herd immunity, which is a good one. In my opinion, we need to adapt a herd mentality. A herd gathers, it ranks, it allows the sick, the old, the injured to meet its natural course in nature. Sarah Kirwan: Then we have our other sectors, such as our homeless and other people who just defile themselves by either choice or mental issues. This would run rampant through them, and yes, I am sorry, but this would fix what is a significant burden on our society and the resources that can be used.” Wow. To see that in writing when we talk about human beings is just incredible to me, and I’m sure to you and to many others. On the flip side of that though, he’s not the only one that’s been pushing this survival of the fittest philosophy. The words, language and messaging we’ve been consistently fed throughout this pandemic are all saying the same things in a more subtle, less in your face way. I just feel like he’s the one that came right out and said it and put it in writing really. What are your thoughts on that Charis? Charis Hill: I just, as you were reading through that my blood was boiling. I know that that thinking is out there and it’s quite prevalent

    1h 13m

  9. 02/03/2021

    Incluse This! Episode 4: What Disability Community?

    Episode 4: What Disability Community? Wednesday, February 3, 2021 GUEST: Tiffany Yu, Founder of DIVERSABILITY https://media.blubrry.com/incluse_this/content.blubrry.com/incluse_this/Incluse_This_S1_E4_What_Disability_Community-Tiffany_Yu.mp3 When we think of disability, we often think of the literal definition, which is a medical issue that keeps a person from fully participating in daily activities. And when we think of disability community, we often think of the total population of all disabled people. However, a medical diagnosis does not automatically make anyone a member of the Disability Community. In today’s episode, we explore this phenomenon. QUICK LINKS As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability. OUR GUEST: Tiffany Yu Tiffany Yu is the CEO & Founder of Diversability, an award-winning social enterprise to rebrand disability through the power of community; the Founder of the Awesome Foundation Disability Chapter, a monthly micro-grant for disability projects that has awarded $41.5k to 42 projects in 8 countries; and the host of TIFFANY & YU, the podcast. She was appointed to the San Francisco Mayor’s Disability Council by San Francisco Mayor London Breed in 2019. Tiffany comes into this work based on her own personal experiences of acquiring a disability at a young age as a result of a car accident. She started her career in investment banking at Goldman Sachs, working on over $14 billion of announced transactions. She has also worked at Bloomberg, Sean Diddy Combs’ REVOLT Media & TV, and a venture-backed real estate startup. She has been featured in Marie Claire, the Guardian, and Forbes and has spoken at the World Economic Forum Annual Meeting in Davos, TEDx, and Stanford University. She received her Bachelor’s degree from Georgetown University and her Master’s degree from the London School of Economics. LEARN MORE: https://www.tiffanyyu.com https://www.tiffanyyu.com/podcast https://mydiversability.com   TRANSCRIPT Hi, and welcome to Incluse This! This I’m your host, Sarah Kirwan. And this is a movement for disability equity. Today, we’re talking with Tiffany Yu, and we’re talking about the disability community. Tiffany is the CEO and Founder of Diversability, an award-winning social enterprise to rebrand disability through the power of community. She is also the Founder of the Awesome Foundation Disability Chapter, which is a monthly micro-grant for disability projects that has awarded $41,000 to 42 projects, in eight different countries. Tiffany is also the host of Tiffany and Yu, the Podcast. She was appointed to the San Francisco Mayor’s Disability Council, by San Francisco Mayor London Breed, in 2019. Tiffany comes into this work based on her own personal experiences of acquiring a disability at a young age, as a result of a car accident. She started her career in investment banking at Goldman Sachs, working on over $14 billion dollars of announced transactions. She has also worked at Bloomberg, Sean Diddy Combs Media and TV, and a venture-backed real estate start-up. She has been featured in Marie Claire, The Guardian, and Forbes. And, she has spoken at the Word Economic Forum Annual Meeting in Davos. She has also given talks at TEDx and Stanford University and she received her bachelor’s degree from Georgetown University along with her master’s degree from the London School of Economics. And with that, let’s dive into What Disability Community? Welcome to Incluse This!, Tiffany! I’m so excited to finally be here talking with you here today and answering the question that so many have – What Disability Community? So, you and I met by phone last year when I initially started planning this podcast. Since that time, the podcast has obviously undergone many edits, reschedules, and new launches dates, which you have been so flexible and I’m extremely grateful for. Despite those barriers, here we are today. As you know, I’ve researched, targeted, and hand-selected the guests for this podcast, in order to maintain the intent behind it, which is to provide this coalitional space where meaningful conversations can happen, shared experiences can be highlighted, and change has a chance to happen. I’ve seen the work that you’ve done and the work you continue doing to bring this community together, as well as bringing it disability to the forefront of the greater diversity conversation. When we think of disability, we often think of the literal definition of disability, right? Physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits a person’s ability to engage in certain tasks or actions, or participate in daily activities and interactions. I don’t think I can even count the number of times I’ve had to fill out paperwork or have a doctor’s note speaking to my ability or lack thereof to fully participate in daily activities. However, does this automatically make me a member or a part of the disability community? Let’s start to answer that question with a couple of quotes from a great blog post written by Andrew Pulrang titled, What Defines Members of the Disability Community?; this connects us back to the original conversation we had with our guest, Molly Bloom, a couple of weeks about being disabled enough. Pulrang says, “If you have a physical or mental condition that you have to think about and plan around every day, then you are disabled.” He goes on to write, “But, if I have absorbed one thing over the last several years of disability blogging and immersion in online disability culture and activism, it’s that being one of the disabled population isn’t the same thing as being a part of the disabled community.” So Tiffany, we can use the words disability community to reference the total population of all disabil disabled people excuse me. We can use them to reference common characteristics of disabled people or their medical diagnosis. We can use them to describe a small group of disabled people who have a common viewpoint or opinion about something. What do we actually mean when we use the words disability community? Tiffany, can you please break this down for us. I loved that entire intro. I mean that was so enlightening for me, so I think what I wanted to start with is the definition of disability, which you highlighted. And for me, the way I I phrase it is a condition of the body and mind that impacts how we go about living our daily life. Because I think that embedded within that definition of limiting, impairment, interfering, right? Those all have a certain type of connotation that many people who are disabled don’t necessarily feel an affinity with that, which is why there was a part of me that really wanted to add the word systemic somewhere in that definition, right? There are so many systemic factors that are limiting us, right, and if we take a look at the Social Model Theory of Disability, which says that disability exists as a result of our physical uh infrastructure and social attitudes towards disability. Like if we look at disability through the definition of the Social Model what we see is there are so many systemic factors that are what are limiting, impairing, and interfering with us being able to live our lives fully. That was kind of point one. I think point number two is that I loved the way Andrew talked about how the the populating of people who are disabled, and the disability community are different. And I want to reference a piece that Professor Rosemarie Garland Thompson had written for the New York Times and the piece, I believe, was called Becoming Disabled. And one of the things I talk about in my work is that I believe most disabled people have what I call two disability origin stories. The first is when we either acquire our disabilities or if they’re congenital you know that’s the first disability origin story is is consciousness around the diagnosis. Or or or when we initially have symptoms you know because sometimes even the diagnosis can take can take a long time. The second is when we uh take ownership over our disability um and our disability story. So, I think that the difference between being part of the disabled population and being part of the disability community is rooted in getting from disability origin story number one to disability origin story number two. And to be honest, many people who have disabilities may never get to disability origin story number two. That’s one thing that we talk about within the Multiple Sclerosis community because a lot of people who appear to be nondisabled who are living with MS but don’t identify as having a disability or being disabled, which I actually think keeps them from accessing a very amazing community for support and this kind of kinship and understanding that you get with the disability community. The mission of your organization, Diversability, is to rebrand disability through the power of community. So, what definition of disability community do you and your staff members and volunteers use in your work?   That’s a great question. I like to keep the definition of disability broad and I like to leave space for people to self-identify as they see fit. One of the things that I’m learning is that the definition of disability actually changes depending on either who or what and by that I mean individuals or policies or government departments you know define disability. And so, the definition of disability is just so nuanced right? Because what it means to be disabled, to receive s

    45 min

  10. 01/26/2021

    Incluse This! Episode 3: Words Are Powerful

    Episode 3: Words Are Powerful GUEST: Jourdan Saunders, MS, CCC-SLP, Founder of The Resource Key https://media.blubrry.com/incluse_this/content.blubrry.com/incluse_this/Incluse_This_S1_E3_Words_Are_Powerful.mp3 How powerful are the words we use? What effect do words have on how we interpret information? In this episode, host Sarah Kirwan and guest Jourdan Saunders, have a down-to-earth conversation about words, words, and more words. Listeners will walk away with a better understanding of how powerful words are, within the framework of disability, woke capitalism, relationships, plain language, getting comfortable in our conversations, the Americans with Disabilities Act (ADA), and much more. QUICK LINKS As language, perceptions and social mores change at a seemingly faster and faster rate, it is becoming increasingly difficult for communicators to figure out how to refer to people with disabilities. This style guide, developed by the National Center on Disability and Journalism at Arizona State University, is intended to help. It covers almost 200 words and terms commonly used when referring to disability. OUR GUEST: Jourdan Saunders, MS, CCC-SLP Jourdan Saunders, MS, CCC-SLP is a Speech Language Pathologist, Disability Inclusion Consultant, Author, and Resource Generator. She develops solutions to ensure people with disabilities are included and are making meaningful connections with brands. Jourdan is the founder of The Resource Key providing consulting services using innovative approaches, research based industry resources, and advising companies to ensure People with Disabilities are included, and making meaningful connections with brands. She is the owner of one of the largest SLP resources group with over 15,000 followers. Jourdan has written several articles for non-profit organizations, major magazines, and online resources. Her work has been featured in USA Gymnastics, American Speech Language Hearing Association (ASHA), MarketWatch, Association of University Centers on Disability, and Kennedy Center. TRANSCRIPT Hi, and welcome to Incluse This! This I’m your host, Sarah Kirwan. And this is a movement for disability equity. Today, we’re talking with Jourdan Saunders, and we’re talking about how powerful words are. Jourdan Saunders is a speech language pathologist, a disability inclusion consultant, author, and resource generator. She is the founder of The Resource Key, a business providing consulting services that use innovative approaches, research-based industry resources, and advising companies to ensure people with disabilities are included. And also making meaningful connections with brands. She’s the owner of one of the largest resources group with more than 15,000 followers. Jourdan has written several articles for nonprofit magazines, and organizations, and online resources. Her work has been featured in USA Gymnastics, American Speech-Language-Hearing Association, MarketWatch, Association of University Centers on Disabilities, and The Kennedy Center. Jourdan established one of the first resource websites for students interested in the field of speech language pathology, Future SLPs, which has received recognition worldwide. Recently, she created a program that infuses art and reading literacy skills entitled Design Read Create. Jourdan is the author of Our Reading Literacy Kitchen: Fresh Approaches to Target Reading Literacy Skills. And with that, let’s dive in. Welcome to Incluse This! Jourdan. I am super thrilled to be here with you today talking about words, words, and more words. Thank you so much for having me, Sarah. I am honored to be here with you on this podcast. And words can be used in a positive way or a negative way. So you and I met virtually last September, and I remember exactly why I got ahold of you. Because I all of a sudden got pretty active on LinkedIn, and I wanted to see who was posting in the disability, equity, and inclusion space. And I just remember seeing all of your posts that were very well done, well messaged. I completely understood what it is that your company The Resource Key does in this space. And I just really wanted to reach out to you and learn from you, which I’ve already been doing. And I’m just really looking forward to learning more as you and I continue to partner, and have conversations, and learn and move forward together in this space, and just do our best to bring disability to the forefront of that greater diversity conversation. During the first virtual meet and greet we had over Zoom, I remember using the word able-bodied. And then you used the word non-disabled, which kicked off this incredible discussion about words, the intent behind them, the power they hold, and the effect they have on others. And that’s really what led us to being here together today. Yes. For me, I have read a lot of information in how these words are used, really looking at the impact of these words. I use the word non-disabled because it is a neutral term. Anyone at any point can have a disability at any time. So I consider myself to be non-disabled. So I think it is important though, to read the history behind some of the words that we use. What happens when words change or things shift on an individual level sometimes, if we think words are negative and we should no longer use them, we want everyone to start using the new words immediately. But it’s not that easy sometimes. For example, I was reading an article from the New York Times. And in the article, it specifically stated how historians have traced America’s welfare system to England’s 1601 Poor Law. And in that, the word able-bodied is included in this law. I was reading this, I think it was about two days ago. And I think that’s interesting because 1601 let’s say, what is that? 400 years ago. Over 400 years ago. So I think that’s important to point out because able-bodied according to this New York Times article has been used for many years. And it’s hard to stop using certain terms sometimes because maybe on an individual level, we want someone to stop using the terms because we feel that it may be offensive. But then you look at the system, the structure, the history behind these words. And it’s not that simple sometimes when we look at it from the broader perspective. Also, able-bodied is still used in some government reports as well. So that’s why I think it’s important to listen to one another, understand how words are used in different contexts. Because even non-disabled has some controversy too. Because people with disabilities are a minority group. And may I add, one of the largest minority groups. So when we look at, I use the non-disabled. But if we look at I’m Black, and if someone were to say that they are non-Black, then it wouldn’t make sense in those contexts because we usually don’t say we are non-Black. So it’s never as straightforward as we would like it to be, but that’s why I think it ultimately comes down to continuing to have these conversations like we’re having and keeping the dialogue open. So I want to make something very clear before we move on, because I’m sure it won’t be the last time I say this throughout our talk. But we have to be willing to listen, communicate, be patient, and research on our own to delve into some of the words we use, why we use them, providing the context, what is the history behind them. And I think this sparks continued going dialogue, because just because we use these specific words today, does not mean we are going to use those same exact words one month later, two years later, or even next week. I think the important thing to remember in there is that it is also scary when we don’t know the appropriate terms to use, when we don’t know the right words to use. What you and I have talked about is that it is really important to just have the conversations, even if we are making those mistakes along the way. That’s okay. Let’s have the conversation because they are ever-evolving terms and words. So they’re going to change. And that’s fine. Then we’ll evolve and change with them. I’m glad that you expanded a little bit upon the able-bodied piece, because we will touch on that a little bit later. But I just want to talk a little bit about the history of the disability community. And historically, people with disabilities have been erased from mainstream culture, right? So those of us who are living with disabilities find these smaller, more supportive groups within the disability community. Because this is a space where we can feel free and comfortable to talk about our experiences and our feelings. For me, I found that space when I started playing wheelchair basketball. I was an assistant hospital administrator and public information officer for Rancho Los Amigos National Rehabilitation Center. It was really the first space where I could go and people understood what fatigue was. We shared some similar symptoms, day-to-day symptoms, but also had very different experiences with our disabilities. So I definitely feel like it’s a little awkward for me to talk freely and openly about what I experienced with my disabilities, because there’s a lack of understanding because we’re not educating well enough. People have a tendency to feel sad or sorry. Sometimes they’re just completely uncomfortable or uninterested. For me, it’s more that I’ll just pepper it into a conversation because I’m so used to it. Right? So I’ll just say, “Oh yeah, well I was diagnosed 10 years ago,” and I move on with the story. But I forget that for them, they stop on that and think, “Oh my gosh, I really need to address that MS. She’s sharing this with me, and I need to address that.” But it’s more for me just adding to the story, if that makes sense. Or adding context to the story I guess. But it usually turns into a conversation abo

    1 hr
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About

Not just a podcast: We’re a movement to amplify disabled voices, tackle the intersectionality that naturally exists for people living with disabilities, connect people through shared experiences, and work alongside disability allies. This safe and coalitional space was created for critical conversations at eye level that lead to change – on individual, local, state, and federal levels. We host in-depth interviews with a wide variety of guests who bring disability to the forefront of the greater diversity conversation, and progress movement for disability equity forward.

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  • Creator
    Sarah Kirwan
  • Years Active
    2K
  • Episodes
    10
  • Rating
    Explicit
  • Show Website
    Incluse This!