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

Sarah Kirwan

Hi and welcome to Incluse This! I’m your host, Sarah Kirwan, and this is a movement for disability equity.

Sarah Kirwan

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!

Sarah Kirwan

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.

Sarah Kirwan

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.

Sarah Kirwan

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!

Molly Bloom

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.

Sarah Kirwan

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,

Molly Bloom

I guess. I guess that's part of it. Just, you have fun with that. (laughing)

Sarah Kirwan

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)

Molly Bloom

Woo hoo. Congratulations.

Sarah Kirwan

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?

Molly Bloom

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.

Sarah Kirwan

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.

Sarah Kirwan

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)

Molly Bloom

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.

Sarah Kirwan

Awwwww

Molly Bloom

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 friend. I thought that was wonderful. I loved the episode with you and Carl, it's hard to, it's really hard to pick a favorite. I think there's been such great content out here.

Sarah Kirwan

Do you think that, if the goal remains to bring disability to the forefront of the greater diversity conversation through this provision of a safe and coalitional space for having these difficult and sometimes uncomfortable conversations in your professional and academic, as well as your personal opinion, do you feel like this podcast hit these marks?

Molly Bloom

Yeah, I think there were some conversations that likely challenged people's understandings of disability. There were conversations that challenged my understandings of disability, right. I don't, I have studied disability for a long time and there are perspectives here that sometimes I agree with sometimes I disagree with and they've opened the perception that I have of disability. They've also given me, you know what, they've given me a different perspective on how I think of the disability community as a whole, because, I spend time within my specific disability communities, what that looks like for me, it tends to be adaptive sports, disability studies communities, and communities that I work with in my research, which is sometimes assistive technology, sometimes it's rehabilitation. I come away from that experience with this sense that like, this is what represents the disability community. And that is not what I found.

Molly Bloom

There are people who are more closely aligned with the medical system and the benefits that they feel like they get from the medical system. There are people who are vying for bringing feminist ideologies into every day interactions within the disability community that have been new to me. And I think I've grown. I like to see where it's going in the future.

Sarah Kirwan

One of the things that I remember about Stephanie, I loved when she said it's important for people to remember that when you just say the black community, that it's the same as the disability community, everyone within each of these communities has a different experience, a different perspective, a different thought process. And she shared that. I can't remember the author, Angela, I can't remember the author's last name, but what she shared was that this author said, one way for black people to truly be free is to be able to truly be themselves with their own opinions. And for people to understand that the whole community is not grouped under one umbrella thought or perspective.

Sarah Kirwan

What did you find that it changed some of your perspectives on how you look at disability? Could you explain that more? Or could you provide an example of one of the specific episodes?

Molly Bloom

Yeah. I'm thinking about, the episode that you did for MS Awareness month with Dawnia, please remind me her last name…

Sarah Kirwan

Dawnia Marie

Molly Bloom

Dawnia Marie, right. Who is undoubtedly a force. She seems to come in with such passion and love for the work that she does within the MS Community that she works with. It seems like what you have built, what you and your colleagues and what you've built along with Dawnia has been this really wonderful community for people with MS to share experiences and build coalition and understanding, and really a way to enrich their lives. What's what has been different for me about that is that that's a community that is really closely aligned with medicine, right? Like, you can go to that community and you can talk about, what kind of medicine you're on, or maybe what sorts of doctors you want to work with and don't want to work with and how to advocate yourself with doctors.

Molly Bloom

Right. When I come, when I come at a perspective on disability from a disability studies perspective, my approach is the medical view of disability is super limited because in medicine like the definition of the understanding, the whole ethos around disability is that disability is a limitation of the body. The goal of medicine is to reduce disability, right? That's totally different from like a disability pride perspective, disability studies perspective that says, I am not limited. I am by some sort of pathology of my body. This is the social model versus the medical model, which there's been a lot of talk about the social model of medical model. You can look it up. The social model of disability or a disability pride perspective would say, there's nothing inherently wrong with me. I'm not lacking. It's the world and society that's wrong. It's the world in society that needs to be changed so that I can be fully embraced and not marginalized.

Molly Bloom

I've just gotten like a greater understanding of the complexities of disability for some people with a disability and in some communities that are disability communities, medicine, and an embrace of that medical approach is it is an inherent part of that community for really good and complex reasons. Right? So it's deepened my understanding of, how I think disability community needs to be structured. Right. I, I feel like it just like slightly less militaristic about the, about pushing against that medical perspective on disability.

Sarah Kirwan

Wow. I never even actually thought about that.

Molly Bloom

Yeah.

Sarah Kirwan

You and I talk a lot about disability identity and my own understanding of my identity with my disabilities. I never really thought about the fact that I also am incredibly closely aligned to that medical model.

Molly Bloom

And, and there's probably a lot of reasons why you are closely aligned to the medical model. There's probably, there's probably a lot that you can say. You have said over the course of the season, about how I, I don't know, it's just kind of the state of the world that we live in, that disability is embedded in medicine. It is in our world, right. There might be an alternative world in which it's not. Sometimes that engagement is the way that you sometimes it's how you advocate for yourself sometimes it's how you push back. Right. It's, it's complicated.

Sarah Kirwan

Have you been to self-help groups?

Molly Bloom

No, I, I, I've been to maybe one or two self-help groups, but I've never really fully engaged with them.

Sarah Kirwan

Do you think that if you were to go to a self-help group for amputees that the group members would talk about their providers or treatment they're receiving, or would it be as aligned as we kind of are because you're right. When we walk into a self-help group, this is what we say, I'm Sarah Kirwan. I was diagnosed in 2011, I'm on Copaxone, 40 milligrams, three times a week. That's my DMT, my disease modifying therapy and my doctor is so-and-so. And that's how you introduce yourself. It's kind of, just the introductions and that is totally aligned medically. So now I'm curious if you went into an amputee self-help group, what would that conversation be?

Molly Bloom

It might be, it might, it's probably different in every amputee self-help group. The amputees that I've interacted with the most, I think, if you're a person who sustains an amputation and you're going to a self-help group for like newly injured amputee is like new amputations. There probably would be a deeper embeddedness into that medical system, because that's how you understand yourself at that point. With the amputees that I know who are further away from their amputations, and then some people are, have congenital limb deficiency, right? So there's a lot of people who are born with limb deficiency and they don't sustain an amputation at some point in their lives. For the people who are further away from it, I don't think the amputees that I know are as closely aligned with medicine because, I don't want to get into like comparing disability experiences, but I do think, right.

Molly Bloom

I do think it can be less involved with, treatment and therapy if you're an amputee, not all the time. Right. I think on average, probably a person who's an amputee. I am thinking like a leg amputee has less interactions with the medical system than a person who's diagnosed with MS. I don't know the data or the statistics, but I think that's one of the reasons it might be different.

Sarah Kirwan

Well, and what I think, what I'm trying to get to is, so with MS, it's constantly changing. You're going back to that self-help group, each week you do go, well, you might go to a newly diagnosed class or optimal living, which we talked about in another episode, but then you go to the self-help group, like it's continuous. I mean, I've been going to self-help groups now for 10 years. I wonder if it's like, and I you're right. I always see like spinal cord injury, newly diagnosed groups for amputees. There are also those ongoing support and self-help groups. It's just interesting. It's I never thought about the alignment that I have so closely with the medical model, as I'm trying to explore this identity model as well.

Molly Bloom

Mmmmm. Yeah, and it's really interesting. There is super interesting ambivalence between the idea, like the idea of self-help, just the idea itself, not what actually happens in self-help groups, because I think what happens in self-help groups can be, these really interesting spaces of community, which I talk about in my dissertation, not necessarily a self-help groups, but just generally when disabled people are around each other and talking to each other, there is some really beautiful instances and like transformative understandings of identity. Like there's cool stuff that happens when disabled people are together, but just the whole idea of like self-help as a concept, that's a hard one for me to understand with a background in disability studies, because, my perspective is why is it feels very, it feels very neoliberal. Like why are the disabled people, the ones that need to help themselves? How about it's like a societal help group? Like how about society changes? Not me.

Sarah Kirwan

Mmmmm. Interesting. And here's the background on that just from an MS perspective, there is, a lot of solidarity and healing that comes from that group and understanding that the person leading it is your peer, as opposed to someone who would be coming in from the outside, trying to, I don't know, talk about MS From a perspective that they really don't have, but that's really interesting. Also a societal help group. Huh.

Molly Bloom

Yeah. Where are the groups for people who don't identify as like, disabled, like where the groups for like able-bodied able minded self-help groups, like how you can not suck as much? (laughing)

Sarah Kirwan

(laughing) Well, that, I mean, and people like to call them support groups, which also members of the MS Community are like, well, I don't want to, I don't need a support group. I'm just going to talk to my peers. I think there's so many different layers of what that looks like for people and how they experience that or if they even want to.

Molly Bloom

Yeah. I think that it is awesome when disabled people get together and they start talking about shit. Like, I think that, I, my perspective is that for people who sustain an injury, some point in their lives, that is a form of rehabilitation that's often not recognized by some medical systems it is. But, I also think, I just know from my own experiences in disability community, right? Like I, I had a lot of preconceived notions about what it was going to be like to live as an amputee that were sort of shattered when I, when I met the bad-ass disabled women that I played basketball with. Right. They, and they modeled for me this, not this life, that's like full, I mean, free from strife. Like it's hard to live with a disability, but a life in which you can go, I don't know, f*** that. Like, this is who I am and I can build a meaningful life.

Sarah Kirwan

Yeah. I spoke on a panel this week, a women in leadership panel and they asked if I had any advice for young professional women, what would I give them? And I said, the thing that I would do over again is that I would never allow anyone to shame me for bringing my authentic self to the table. I would have pushed back on that said no to that. I wouldn't have had to go through years of rediscovering my kind of authentic self and getting to this empowerment of owning my identity as a disabled woman with MS.

Sarah Kirwan

You know, you and I are going to talk next season about, Crip time, which I really find interesting because if I have political aspirations, which I always have, I mean, I love politics. I love all of it. I am a political junkie and I just like take it all in.

Sarah Kirwan

When I look at that. I look at the reality of could I ever actually work in Congress? And yes, I could, because of my all, I don't have to go through a list, but yes, I've, I could do that. But with my MS. Could I do that? No, because how would I spend the night in a vote that goes on for like 17 hours? I mean, there's so many demands, like physical and mental demands on that. How is that accessible for someone who has a disability like me that could just couldn't do that,

Molly Bloom

Right. Yeah. That would be wonderful. We can totally talk about Crip time.

Sarah Kirwan

Yeah. Cause I'm very curious about that because I feel like it removes us from so many things just the time and the production level. Like I can't go 12 hours, 15 hours. Like there's just no way. And then I was thinking and what would be a reasonable accommodation for that they let someone sit in my place. Right. I mean, how else would you do that?

Molly Bloom

I don't know. That's a good question. That's really interesting. And I wonder if people have thought about this in, like, I wonder if there's been any discussion of it with lawmakers or people who are disabled, who are like dealing with sh** or even, it extends beyond disability too, because I had Congress members have lives too, and I'm sure they have sh** that comes up for them.

Sarah Kirwan

True. That's a very good point. They, that family, I mean, even for a young woman with children, there's that wanted to have a balance. There's no way that's why all these women are like 90.

Sarah Kirwan

And then you were talking about in your dissertation about working with people in Crip time. On the flip side of that is, I may not get to something today because I don't feel well that day. It's just not going to happen. People have to also kind of come to terms of how to work around or to be more flexible around timing and production. But anyway, there's so many topics I want to cover and have conversations about next season. And I'm really looking forward to all those conversations. Season two will launch in the summer. I really want to explore disability in different cultures and countries. I want to continue to bring new perspectives and thoughts from disabled people here in the US.

Sarah Kirwan

We're going to have guests conversations with guests about the impact of anti-Asian rhetoric and language, what it's like to be disabled in a country like Puerto Rico, that's an American territory. Why disability equity and inclusion work belongs somewhere other than human resources. Why inclusion is more than the implementation of the ADA, the difference between disability justice and disability rights and much more, I mean, that's a big plate of topics, so we'll have to whittle that down.

Sarah Kirwan

But you and I are going to have a pre Paralympic pre-Olympic conversation about disability, inspiration porn, which I can't wait for. And I'm really interested by this conversation just as it relates to sports, because I feel like we look at other athletes and we're like, yeah, they're an inspiration. And then we look at adaptive athletes and we're not supposed to call an inspiration. And so I think that we really have to explain that to people why that is so that people understand what inspiration porn is and why it's bad.

Sarah Kirwan

So I'm stoked about that. Are there other topics you feel that are like really urgent to be included in the seasons or something that you really want to have a conversation about next season that people aren't talking about in this space?

Molly Bloom

That's a hard one. I don't, I don't know. There's, there's tons of topics. I, I like your list. (laughing)

Sarah Kirwan

Okay. Maybe we leave it, maybe we just leave it at that. (laughing)

Molly Bloom

Okay. (laughing)

Sarah Kirwan

There are, there are so many things, one of the other things I really want to, gosh, I heard on the news last night, as we're, as I'm watching this trial, they were talking about a jury of your peers. Right? And that's another thing that I find really interesting that I want to talk about next season is how do we ever really have a jury of our peers, people with disabilities who are going to serve as jurors most of the time, they don't because of the accessibility issues. And like I shared with you, I, at one point I had to get a doctor's note to say, Hey, there's no way I could participate in a trial that's four to seven days long. I can't guarantee you that I'll be here every single one of those days. And from that point on, I never got a jury summons in the County of Los Angeles again.

Sarah Kirwan

So, how are we, how is anyone in this country even getting a jury of their peers? I'm very curious about this topic and then really looking at it from like a disability perspective. So, I have so many, thoughts and ideas for next season, and it's still difficult for me to believe that it's a wrap on season one. I mean, it's been such an incredible learning process for me. It's also been extremely challenging both mentally and emotionally. I think physically because of my health, but it's just been such a rewarding experience. I've grown and I've gained so much knowledge and I've been introduced to so many different perspectives and thought processes and just words and language really. And it's just been incredible. How would you say this journey has that you've taken with me over the past 12 months? Has impacted you or changed you?

Molly Bloom

One of the main ways that this journey has impacted and changed me is, I've learned so much about working with you as a human in the sense that even though I'm a person with a disability, I, I absolutely have internalized ableism that I'm like, this is like we've there's productivity and there's timelines. Like, we got to stick to deadlines and sh**, and you kindly remind me like, Hey, we're gonna push back this recording. I'm burnt out. I'm exhausted. And this is just what it's like to live with the kind of disability I like. That, and that as well as, reading some of the stuff that I've been reading has helped me shift the way I understand how we can get things done in a more collective way that is less about this sense of productivity that requires like an able body and able mind. I, like I said earlier, I just I've learned a lot about the different perspectives that are in different disability communities and how those don't always align with people who might be the most vocal advocates in the disability community, like on Twitter and, people who are involved in policy or people who are writing disability studies articles.

Molly Bloom

Right? I remember the guests you had on who talked about, COVID-19 being a disability, right. How that is not necessarily something that a person in the who's a strong proponent of disability advocacy in this traditional sense might agree with. Right. And, and it's been really wonderful and it expanding it's expanded the way I understand the value of, lifting up the voices of people with disabilities, especially those who might or might not align with other attitudes on the disability community.

Sarah Kirwan

I think it really goes back to like what Stephanie said, that everyone has a different experience and a different thought on that experience and a different perspective because of that experience. It's so nice to have a woman and friend who stands in solidarity with me to try to and do the best to learn and understand that. I'm so grateful for that because it's uncomfortable for me to have to share that when I go go go crash. I do think that has been something that, is so nice to be able to share it, be able just to share that with you, Hey, I don't, it's not going to happen today. I have a migraine, or, my energy levels just aren't there.

Molly Bloom

Yeah. It's been really valuable for me too. I appreciate your, the dialogue that you open up about that vulnerability. Like I realized that I consider myself an advocate and a person who's very invested in like better lives for people with disabilities. I've never even asked for like an accommodation at work. Right. I've never even really thought about what that kind of world might look like for me as a person who has a disability. And, and I think there's just so much, I don't know what else to call it, but ableism that has percolated into the way I view what I do and how I work, that it's something interesting to explore.

Sarah Kirwan

Yeah. I love that. I think it's been really thought provoking. Some of the episodes have had some pushback, some have had, just a lot of, I mean, for the most part everything's had support, but there has been pushback on certain topics. And I think that's important that we have that pushback to have these conversations because we do all experience our disabilities in a different way.

Sarah Kirwan

I want to thank you so much, Molly for being here today. I just, I'm incredibly grateful for you and your friendship and your support. You've been just a shoulder for me to lean on you’ve been this ear to listen. Like I said earlier, a disabled woman to stand in solidarity with me. You've been my biggest cheerleader along with Carl. Can't forget him (laughing) during this entire process. And you're just this incredible human being. I'm so grateful that you are not only here with me today, but that you have been with me throughout this entire journey and I’m really looking forward to continuing this next season.

Molly Bloom

Thank you so much, Sarah! I am taking all that in, soaking it in and it feels wonderful. I'm glad. I'm really glad that we have this relationship and I'm really glad that you put together this podcast. I can’t believe you’re done with the season. Congratulations, and I cannot wait.

Sarah Kirwan

Oh my gosh. Did you think, did you think I'd make it?

Molly Bloom

No, no. I didn’t think the podcast was gonna happen. I was like oh, okay, she wants to, everybody wants to start a podcast. Okay, great. I had no idea you were actually going to do it. (laughing)

Sarah Kirwan

Oh my gosh, see? Just proving people wrong. Proving people wrong. (laughing) It’s been incredible! Listen, I have to tell you, I’ve been carrying around my tarot cards for two days.

Molly Bloom

Yeah, what are you finding?

Sarah Kirwan

I haven’t done anything with them, yet. I’m just getting my energy on them. I slept with them the past two nights, and I’ve shuffled them, and I started reading my book, and now I have them in just a little bag that fits in my sweater, my house sweater pocket, and I’m just you know, carrying them around, doing a little shuffling right now, just touchin’ ‘em.

Molly Bloom 

Just putting your energy all over them. That’s f***ing great, that’s exactly what you need to do. And, the image of you in a house sweater with tarot cards in it is just like that’s phenomenal. (laughing)

Sarah Kirwan

(laughing) Anyway, I’m so thankful for you being here today and I’m looking forward to having you back next season and chatting about all the amazing topics that we’re going to showcase in season two. Thank you again.

Molly Bloom

Mhmm. Yeah, can’t wait!

Sarah Kirwan

And once again to our listeners – thank you for spending your time with us and joining the Incluse This! conversation and movement. Incluse This! is brought to you by Eye Level Communications, LLC, a California-based woman- and disability-owned small business committed to having critical conversations – at eye level – that are necessary to move disability to the forefront of the greater diversity conversation. If you’d like to learn more about the work we’re doing, please visit the website at: www.eyelevel.works You can also email me directly at sarah@eyelevel.works with podcast episode ideas, as well as comments and questions.

Sarah Kirwan

Remember to put your disability lens on when you look at the world, and tune-in next season for more stimulating conversations on Incluse This! – the podcast that’s really a movement. Take care and be well.

###