#DisabilityAtCAP

CAP’s new Disability Justice Initiative takes over Off-Kilter this week, as we commemorate the 28th anniversary of the ADA, with conversations with Sen. Tammy Duckworth, Matt Cortland, Andraea Lavant, and more — plus guest co-host Rebecca Cokley. Subscribe to Off-Kilter on iTunes.

One in five Americans live with disabilities, making nearly every issue — from health care to the environment to the economy, and more — a disability issue. That’s why earlier this week, in conjunction with the 28th anniversary of the Americans with Disabilities Act (ADA), the Center for American Progress announced the launch of the Disability Justice Initiative — in recognition that it’s long past time we stopped relegating people with disabilities to a single day on the calendar — and viewing so-called “disability issues” in a silo, separate and apart from the broader progressive agenda.

To take a look at how far we’ve come in the 28 years since the ADA — and how far we still have to go — this week the Disability Justice Initiative is taking over Off-Kilter, with guest co-host Rebecca Cokley, who’s leading up the project for CAP, joining Rebecca Vallas for an all-disability episode featuring some of our favorite disability leaders — a takeover we look forward to bringing back on the regular in the weeks and months ahead.

Tune in to hear from:

Sen. Tammy Duckworth on being a disabled mom and a U.S. Senator; moving beyond the pity/charity model to understanding disability as a source of strength; what it’s like to commemorate the ADA anniversary while the ADA itself is under attack; and more.

Matt Cortland, a chronically ill, disabled lawyer and activist (if you’re not following him on Twitter, you’re doing it wrong) on the importance of broadening the disability movement beyond traditional disability categories, to include chronic illnesses such as Crohn’s Disease; why he went to law school as a “survival strategy”; the work of changing norms and spaces, instead of continuing to force people with disabilities to figure out how to “fit in”; the magic of peppermint oil, and more.

Andraea Lavant, disability advocate and friend of the show (follow her on Twitter too!), on the quiet ableism of straw bans and what straws mean to her; how having people with disabilities at the table helps us craft stronger, more inclusive policies; and what’s wrong with demanding that people with disabilities explain themselves and their accessibility needs on the internets and in real life.

For more on this week’s topics:

For more great stuff on disability, check out:

This week’s transcript:

REBECCA VALLAS (HOST): Welcome to Off Kilter, the show about poverty, inequality, and everything they intersect with. I’m Rebecca Vallas and this week instead of the Slevs, the Slevinator, Jeremy Slevin and his beard and everything else that comes with him, I have with me a very special guest co-host for the whole episode and her name is Rebecca Cokley. Cokes, thank you for coming in and doing this!

REBECCA COKLEY: It is an honor and a privilege to be here in Slevs’ stead.

VALLAS: And Slevs I know is going to have all kinds of FOMO, because of how much fun we are going to have on this week’s episode in his absence. But there’s a reason I have you here this week. It’s not just because I love you and I’m not going to get into choosing favorites about whether I love you more than Slevs, that’s for a separate conversation, probably in his presence actually.

COKLEY: Oh, we have to do it in his presence.

VALLAS: So we’ll do that another time.

COKLEY: Yes.

VALLAS: But the reason I have you with me for this episode, and for the whole episode today, not just for the ‘In Case You Missed It’ segment, which we are skipping this week, now people might be guessing as we’re having this conversation that the reason I have you here is because this week is the 28th anniversary of the Americans with Disabilities Act, the ADA, that’s actually not why I have you here for this episode. It is because in conjuction with the anniversary of the ADA, you’ve got some really excited news to share.

COKLEY: Yes, we are thrilled to make the formal announcement that the Center for American Progress is launching our Disability Justice initiative.

VALLAS: Woo hoo!!!! I am regretful that I did not bring anything bubbly to uncork while we are doing this. I feel like popping bottles is the noise we need, maybe we can find an app that does that sound for us. Will, when are you going to bring sound effects? Serious question because this is what the show has been missing.

WILL URQUHART (PRODUCER): I can get on that.

VALLAS: OK, if you can get on that, that would be great. But in the meantime without the popping of the bottles, Cokes, this is a huge deal, not just for CAP, but in my opinion for the progressive community because, and this is why I was so clear upfront about saying that we’re not doing this episode this week, all disability because of the ADA anniversary, too often even among the progressive community, disability and people with disabilities only get remembered and commemorated and centered as voices and as leaders once a year when we commemorate the anniversary of the ADA.

COKLEY: No definitely, and I think it really is, the law is 28 years old. The law is old enough to rent it’s own car.

VALLAS: Ha! With some spare years.

COKLEY: With three years of early childhood education we can throw on top of that. [LAUGHTER] And so I think it’s funny, having been in this field and having done this work now for 20 years, I remember when ADA Day was just a day. I remember coming to Washington DC in the early aughts and it being like oh we have a day full of events. And then it turned into two days, and then it turned into, in the last probably, I’d say the three or four years it’s been ADA week, with the exception being 2015 when it was ADA month and it was wonderful and exhausting and I think I’m actually still recovering from ADA month 2015.

VALLAS: Because that was the 25th anniversary, which was a big one.

COKLEY: Which was huge one.

VALLAS: The car rental anniversary, actually.

COKLEY: Yeah, it’s the car rental anniversary, I think for us continuing, there has been a continued opportunity to look at how issues of disability and issues impacting the disability community can be, we know are fundamentally the issues that impact everybody. How do you drive? Access to cars to keep going down that road — oh man, the puns, oh.

VALLAS: Keeping going down that road, you didn’t even do that on purpose.

COKLEY: I didn’t even do that one on purpose, it’s bad.

VALLAS: We are deep fried twinkies today.

COKLEY: Live at the Iowa state fair, Rebecca Vallas and Rebecca Cokley are eating deep fried twinkies!

VALLAS: While embodying them also.

COKLEY: Yes, but really focusing on, and let me say a couple of things. One, we were very deliberate in focusing on the framework supplied by the use of term “disability justice”.

VALLAS: And people might be wondering what that means, that’s not just words, that actually has a very specific meaning.

COKLEY: Definitely, it comes out of a number of activists in the Bay Area whose work we are honored to be working on building on, folks like Mia Mingus, Patty Burn, Sins Invalid out in the West Coast who really looked at the models of, the framework around disability rights and said this isn’t reflective of those being most impacted. We need to be talking moving, recognizing folks from a place of wholeness, not that there’s anything wrong with us but that we’re fine where we are, meeting us where we are as people with disabilities. That we are centering the voices of multiply marginalized people with disabilities, people of color, Black and Brown folks, immigrants, the LGBTQ community, trans folks with disabilities, etc. and also as well working on cross-movement solidarity. And really, what we’re trying to do, we’re not putting ourselves out there as the experts in all things disability justice because we aren’t. that’s not what we’re really looking to do with this project. What we’re really looking to do is taking the themes of disability justice and figuring out how do we lay it as a lense across the broader progressive movement.

VALLAS: And people are, who listen to this show are aware that I care a lot about disability, it’s a big part of the work that I do in the poverty space and it’s something that CAP for the past 4 years has been intentionally and actively building out as a lense across all of our work. But this is a particularly important moment, the launch of this project because, and I’m really proud to say this, this is CAP becoming the first major think tank in the United States to host a dedicated disability project. And as exciting and pride causing as that is a thing to say out loud, it’s also equal parts really friggin’ depressing because this is 2018 and as you said, 28 years after the signing of the ADA. So I know a lot of why you’re excited and why I’m excited about this launch of this project is that it’s a front and center explicit recognition and really a commitment that disability needs to stop being viewed by the progressive community and by places like CAP as a separate issue or separate set of issues in a silo. This is something where, Neera Tanden said it at the launch event and I think it’s worth repeating, every issue that we work on at CAP and almost every issue that we as progressive care about from health care to the environment to the economy to criminal justice, all of these issue areas, these are disability issues. And to miss that or to think of “disability”, I’m putting this in big scare question, “disability issues” as a separate thing that’s really only the purview of the disability community, is a really narrow way of looking at these issue sets and it’s something we need to close the book on as we ask what comes next for the next chapter of fighting for disability justice.

COKLEY: I think one of the things you said earlier today that has really stuck with me as well is that it’s also moving from beyond disability as the sexy sound bite, disability as something that comes up when we’re gearing up for the next fight and we get a phone call from one of our partner organizations who’s like hey, can you like call in ADAPT, like they’re the damn 52nd Airborne to come in and join us on this protest? And it was like yeah, but where were you on Medicaid, where were you when ADAPT needed help on X, Y, or Z? Where are you on the Disability Integration Act? And how can we move from just actual formalized tokenism to actual authentic partnerships in these conversations. And respecting and validating and valuing what each other brings to the table in these spaces in a way as peers versus a way as patronization.

VALLAS: There’s so much to celebrate about 2017 as this tremendous turning point where people with disabilities, disability activism, it was all front and center for progressives to see and the power of the disability community was visibly core to saving the Affordable Care Act, to save Medicaid when people thought that wasn’t ever going to be possible but that being said, recoginition isn’t enough and so that’s a lot of what this project is about, is about saying we’ve got to get past thinking about the disability community as part of an outreach strategy, we got to get to where these are folks who are at the table and where we are centering disability in all of our policymaking and as we thinking about what the progressive agenda looks like because it’s not separate from what the disability agenda is. And if we think about it in those narrow limited and siloed terms, we’re doing it wrong.

COKLEY: Definitely, and we have been doing it wrong. Thinking about even, everything from how we organize events. I know we’re going to hear from our colleague Julia Bascom in a little bit about accessible activism, how we —

VALLAS: Well actually, let’s cut to her for a second because at the event launching this initiative we had a whole bunch of badass ladies that we love and it was actually an all women event, which was super, super cool and intentional and we’ll hear from actually Senator Tammy Duckworth in just a little bit as well who was a big part of that event and had a great conversation with you. But let’s cut to Julia Bascom, one of our friends and colleagues, she runs the Autistic Self-Advocacy Network and she had some really important words for progressive when it comes to what inclusive and accessible resistance looks like. Let’s take a listen.

[START CLIP]

JULIA BASCOM: I’m a progressive organizer and I’m doing a rally and I’ve got a stage and I’ve got a megaphone and I have a lot of passion, what could go wrong? What could I be forgetting? And so we found was to answer all of those question over the course of the years, including ways I wouldn’t have thought were possible. We know how people with communication disabilities can call their senator now, we figured it out. You have to tell them that it’s not a robo-call because of the computerized voice but you can do it. We wrote a Medicaid tool kit that explained the Medicaid program at a 4th grade reading level and we didn’t leave anything out. I didn’t think that was going to be possible, it was. And as a result it’s our most popular resource, we have a ton of self-advocates now who know what Medicaid is and why it matters to them.

[END CLIP]

VALLAS: That was Julia Bascom, as I said she’s the executive director of the Autistic Self-Advocacy Network. She is a powerhouse, she is totally worth following on Twitter. If you’re not following her you’re doing it wrong, her handle is @juststimming, I learn from her each and every single day. And one thing she didn’t mention Cokes, that I know you and I have encountered a lot when it comes to the subject of what resistance looks like and whether it’s inclusive, newsflash progressives — just being progressive isn’t actually enough and doesn’t mean that our work is inclusive and accessible and one of the things you and I know have been experiencing time and again is going to the rally or the press conference or whatever it is and you’ve got folks in wheelchairs who are supposed to speak to the audience and then for example the mic doesn’t come off the podium and so what are people supposed to do? Or you’re in a part of the Capitol lawn that you can’t actually move chairs through. So there’s a million and one ways that progressive can and must do better, and I know we at CAP are struggling to do better every single day. But really important words for Julia there.

COKLEY: Oh definitely, and I think as we talk about moving from looking at people with disabilities, or looking at inclusive of people with disabilities as something to do to make you feel good, or because you get a gold star for the day, I think one of the things, actually I wanted to say and we actually didn’t have it on the list is there’s a lot of patting on the back that goes on in progressive spaces and also in corporate space, where we continue to see people with disabilities left behind or their wheelchairs left behind. And really being deliberate about what we mean when we talk about inclusion, even in activist and progressive circles.

VALLAS: Amen. So this whole episode is going to be dedicated to speaking with and hearing from a range of our favorite folks in the disability space. There’s a lot more folks that we wish we could be having into this episode but we’re going to be having the on the weeks and months ahead because I’m really excited to announce Cokely that we’re going to be doing this as a regular thing. We’re going to have the disability justice iniative take over Off Kilter on a regular basis and you’re going to come in and kick Slevs out of that chair we’ll take over, bringing in some of these voices but before we close out and head into some of those conversations including with Senator Tammy Duckworth, we’re going to hear some tape of you and her talking from the launch event that was just amazing to watch two badass disabled mamas hanging out and doing some real talk. So we’re also going to hear from Matt Cortland, AKA Medicaid Matt if you know him on Twitter who is truly amazing. We’ll also be speaking with Andraea Lavant, one of our friends and a friend of this show who’s been on several times. But before we do that, Cokes, there’s a lot of really good stuff out there that people who maybe aren’t aware of it but maybe what to find more, where can I find more content and great platforms on disability issues and from disability voices, any recommendations?

COKLEY: Oh definitely. We always give love to Alice Wong, our loving robot overlord as we lovingly refer to her.

VALLAS: Hi Alice!

COKLEY: Hi Alice! Alice joined us last night remotely for our reception celebrating our launch and we were thrilled to have her there. Alice’s twitter handle is @SFdirewolf and also runs the disability visibility project podcast, so make sure you check that out.

VALLAS: And she’s one of the co-founders of #CriptheVote too, right?

COKLEY: Yes, #Cripthevote, one of the greatest hashtags in the disability community space. It’s one of the things that I, it’s probably one of the hashtags that I use so frequently for drawing attention to the work that we’re really looking to build and grow. Also, Vilissa Thompson has the Wheelin’ and Dealin’ podcast with our other friend Neil Carter. Vi can be found on Twitter @VilissaThompson and is also the founder of the hashtag #DisabilityTooWhite, which was really central in the last central years about highlighting racial disparities in the disability community and lack of actually inclusion of leaders of color in these spaces.

VALLAS: Do you have any other recommendations? I know there’s probably too many to fit in, but I know there’s a few other folks.

COKLEY: I think if I were to throw in a couple of other folks, obviously our friends at Read it and Writes who have been phenomenal at developing really quality and deliberate and intentional disability media on everything from sub-minimum wage to disabled folks behind bars. They don’t have a podcast but you can track them down on Twitter and online. And also they just celebrated their third anniversary the Coalición Nacional para Latinxs con Discapacidades, our dear friend Catherine Perez and her whole crew who are really part of a growing movement of Latinos and Latinas with disabilities and it is so awesome to watch where there was once nothing, to watch this start to grow. To watch the seeds plant and watch the activism and the advocacy go with that. And I think to wrap it up, obviously our dear friends in ADAPT.

VALLAS: Hey Bruce and everybody else, we love you too and we think folks need to know more about you, not just that you guys put your bodies on the line to save things like the Affordable Care Act and Medicaid, you know, small things like that. But you guys have been working for decades to achieve so much of the progress that we’ve seen and you’re also not afraid to call people out when they’re screwing up and sometimes that’s been us. I also want to give a quick shout out before we wrap to the Ford Foundation. Because they are true ballers in this space and I have to say Noorain Khan, who is the program director who works directly with Darren Walker who leads the Ford Foundation. She had some fiery words at the event commemorating the launch of the disability justice initiative. She is a true powerhouse and the Ford Foundation is full of several true powerhouses who are trying to be a model of the funder community and to really push them to start to realize that every issue is a disability issue and it’s not acceptable to say no, we actually don’t fund disability. So thank you to all of them for the amazing work that they’re doing. So we have to leave it here for now but don’t go away there is a ton of great stuff in this episode and we are just scratching the surface of a lot of the issues and conversations that we are looking forward to having in the days, weeks, months and years ahead. So coming up, don’t miss Cokley talking with Senator Tammy Duckworth, some tape from the launch event for the disability justice initiative.

[MUSIC]

SENATOR TAMMY DUCKWORTH: You’re entitled to be who you are, you’re entitled to have post-partum [depression], you’re entitled to struggle with these things. When I was Iraq and it was hot and dirty and miserable we called it “the suck”, right. And the same was you need to own “the suck.” This is your suck, no one else knows your suck, but you so take charge of it, be in charge of it and own it. It sucks for me to have to be in a wheelchair, it sucks for me that my right prosthesis doesn’t fit well and it sucks for me that I get all of the things that comes with my condition but it’s might and I own it and I’m going to get power from it and I’m entitled to it. And I think if we talk to people, and that’s where I say to my friends who went through chemotherapy and say look, you’re entitled to feel this way. There’s no shame with struggling and going through what you’re struggling, gain strength from it and gain strength from all of these other people who have taken charge of their suck I guess. So being part of this community allows you to be a position of strength. And so that’s the word that I think we need to spread and an attitude of don’t look at me with pity. I earned this wheelchair and I owe this wheelchair and I’m proud of it and I’m going to use to get places faster than you could ever run. [LAUGHTER]

COKLEY: I love the ‘taking charge of the suck’ piece.

DUCKWORTH: Yeah.

COKLEY: That needs to be your personal hashtag. [LAUGHTER] That’s just so amazing. While tomorrow is the 20th anniversary of the ADA and while most years we talk about the law and talk about how great it’s been these last 28 years to see the doors open up and the ramps lower, we know that the ADA is under constant attack right now. And specifically, the ADA Education Reform Act, they really worked to stop from coming to the Senate that would have essentially taken the teeth out of the law. It would have stopped the requirement that public places like restaurants that you fought for and amusement parks and movie theaters would no longer be accessible for people with disabilities. What do you see as the unfinished business of the ADA? Are there places where we need additional fine tuning or are there things that our elders and folks like Congressman Major Owens and Senator Tom Harkin and others didn’t anticipate at the time?

DUCKWORTH: Well I think they fought so hard for the ADA to come into existence that what I found when I was trying to get those 43, we needed 40 co-signers to stop the act in the senate, and I just started going to my colleagues one by one and sitting down face to face with them and asking them to just listen to me. And what I found was a level of ignorance about the ADA and what it means and I think that’s the part that’s missing. We were fighting so hard for it that we forgot to educate the rest of the population about it and we took the ADA for granted because they take the ADA for granted. So what was smart about the other side was that they played on that ignorance. So here’s what I heard from one of my colleagues, well I’m hearing from my grocery store owners association says that they’re going to be sued thousands of dollars because a particular aisle going to go check out is one inch out of compliance with ADA and it’s going to cost them, 5, 10, 20, $30,000 to fix it and it’s really unreasonable. Well know actually that’s not what this act does, what this act does is it says to a person in a wheelchair, imagine that person in a wheelchair was an Asian American who tried to get into a restaurant and that restaurant said nope sorry, no Asians allowed here. We don’t give access to Asians here. Then it would force me as an Asian to educate restaurants, within 60 days, educate the restaurant, wait another 60 days to be six months before I could get access to that restaurant or that restaurant could say well you could come out the back and we’ll pack you a lunch and you can buy food out of the back.

Well there were days in this country when people of color could only purchase from a restaurant out of a back window and we don’t want to go back to that. And that’s what my colleagues, it clicked in their brains and were like, is that what this act does? We thought it was about unreasonable lawsuits. And so the education piece I think is really important. people assume that the ADA is there and people assume that the ADA is strong, and that the ADA cannot be dismantled and that all that they were doing was protecting everybody from frivolous lawsuits and they didn’t understand that this was a [INAUDIBLE] on purpose, looking at the side state and federal law. And once I started talking to people they started signing on. But we haven’t focused enough on that, the education piece.

COKLEY: Well on that education piece, in tandem with it goes the representation piece. And why do you think, there’s some nuance on this. Why do you think people with disabilities are so widely underrepresented in congress or if they are represented in congress, are not out about their disabilities in congress and how do we change that?

DUCKWORTH: One, so many members in congress don’t think of themselves as having a disability when they do. And frankly, I hope that everybody in this country ends up with a disability because it means that you get to live a long happy life and you get to a stage in your life where you develop a disability, and you live long enough you’re going to develop a disability of some sort. So I wish on them a long and happy life, which means that at some point they’re going to have issues of mobility, issues with sights, issues with hearing, with access. And so many of my colleagues don’t think of themselves, they don’t identify themselves as having a disability. Once I start educating them, I say no you actually do.

COKLEY: Welcome, here’s your badge.

DUCKWORTH: Here’s your membership, here’s your ID. But the other thing is in politics it has been tradition to hide the visible disability. And so when members run, if they have a disability, whether an amputation, use a wheelchair, the tradition has been that messaging to hide it for lack of a better word. And so when I started running my campaign, I made sure that I didn’t hide the fact that I use a wheelchair. My wheelchair is seen in ads, a lot of my contemporary who do run actually their consultants will not show them in a wheelchair in their political commercials and all of that. And I also intentionally made sure to show depictions of my wheelchair use from a position of strength. So on many of my commercials, you actually see me using my racing wheelchairs and there’s images of me being strong in a wheelchair and communicating that to the public so they see a vision of the disability as one of strength, one of overcoming obstacles, not of one of somebody who has their own challenges to face so how the heck can they represent me.

COKLEY: One of the images of you that I know stuck in my head this last year and I know my colleague Mia and I’ve talked about this and a number of other folks in the room have talked about this was the image of you bringing your daughter into the Capitol on your lap in your wheelchair. And my dad used a wheelchair when I was growing up and I literally rolled into the disability rights movement by standing on the back of the battery pack of his powerchair in an ADAPT function in Berkeley when I was probably 6. And it was so powerful for me to see that image of you. As a mom, as a woman, and I don’t honestly think I ever realized how revolutionary it was to be a mom with a disability or a parent with a disability until we were hosting a White House event with teenage girls with disabilities and I had my son there with me. At the time he was about two or three and they were totally in awe, these young women were totally in awe of the fact that I was a mom. And I want to be clear and I asked this to both moms and dads with disabilities because I know this is a question that moms always get, how do you manage, work and career and family? But how do you think being a parent with a disability changes your worldview?

DUCKWORTH: As parents we’re already super protective of our kids. And I get even more protective. I think of my daughters and it’s funny, because of her, I’m open to segments of the population that don’t get opened up to and I interact more so at her preschool, I’m meeting more of the kids at the preschool and they’re asking me to come speak to the kids about the wheelchair and how did I get in the wheelchair and the prosthesis and stuff. So in a way it has opened a lot more doors, and it has also, one of my, when I try to get the senate to open up the floor of the United States Senate to allow babies onto the floor so that I could actually go vote with my child with me, one of my colleagues who were opposed to it said something along the lines of well, she could weaponize that baby against us. [LAUGHTER] I was like you know, weaponize the baby, but in a way they were right. Because the image of me trying to do my job and trying to go and vote was a very powerful one that connected with people and connected with the American public and showed that this is a normal thing that moms do, try to get to work every single day and one of my responses to getting the floor to open up was we’re not going to do it. And there was some opposition. Even one of the other senators, is there going to be a dress code for the baby because we’re supposed to wear jackets and neckties on the floor. And I’m like, seriously?

At the end of the day, Mitch McConnell to his benefits was seriously thinking about it and was supportive of it and I finally said listen, I’m coming onto the floor, I’m coming in to vote. Either you let me in ADA wheelchair accessible route, which means you open up the floor of the senate, or I’m going to get out of my wheelchair with my baby strapped to me and crawl up the steps in an non-accessible way that I can get through without having to get on the floor. It’s your choice. Which picture do you want?

VALLAS: Don’t go away, more Off Kilter after the break, I’m Rebecca Vallas.

[MUSIC]

You’re listening to Off Kilter, I’m Rebecca Vallas and I’m sitting here still with Rebecca Cokley. Cokley, thanks for joining me for this whole episode and we are so thrilled to be joined by one of our favorite humans, someone we knew only on Twitter until we met him in real life, his name is Matt Cortland, you might know him on Twitter as Medicaid Matt, his handle is @MattBC, he is a disabled, chronically ill lawyer and writer and general badass. Matt, thank you so much for coming in to join us for this episode.

MATT CORTLAND: It is fantastic to be here.

VALLAS: Well, it’s fantastic to be here with you and I’ve wanted to have you on this show for a long time so this is a dream come true in a lot of ways. But for anyone who doesn’t know you, I think we’ve got to start with your story and how you got involved in disability activism.

CORTLAND: As an undergraduate in college I got really, really, really sick. And the for-profit health insurance company wouldn’t let me see any doctors where I went to college. I had to come back from upstate New York, all the way to Massachusetts and I got thrown into the deep end of the pool, I was seeing doctors and specialists and being referred for imaging and it was confusing and scary and I didn’t understand any of it. I just knew that everything hurt all the time. Eventually I was diagnosed with Crohn’s Disease, which is a form of inflammatory bowel disease. And it changed the course of my life, I was going to be a developmental psychologist, I was going to go to grad school at teacher’s college in New York and had to leave the program and spend some time just going to doctor’s appointments everyday, getting colonoscopies and upper endoscopes and CT scans and MRI and I at some point realized that in order to survive this system I would need to know more about it. And so I went to public health school and around that time, a for-profit insurance company denied the biologic medication that my physician had prescribed. And that process of appealing their denial, which was supposed to be a 72 hour emergency appeal, which they stonewalled and dragged into two and a half months of me wasting away, unable to eat food, unable to stand and walk around without incredible amounts of pain, really demonstrated to me that my survival strategy was going to be going to law school and learning how to sue insurance companies to make them give me the medications I need in order to stay alive. And so my graduate training is in public health and in law, and — [PAUSE]

VALLAS: I want to be real for a second and I actually don’t want to pause the show. So what you’re doing right now that folks can’t see is you’re smelling peppermint oil. And that’s part of your life and that’s real and that’s why I want to leave this in and not edit it out, because it’s related to everything that you’re talking about right now.

CORTLAND: Yeah, so I go through a lot of what’s called Zofran, which is a great anti-nausea drug. And it’s off patent now and so it’s affordable but it takes a little while to kick in so my rescue anti-nausea is this wonderful little bottle of peppermint oil and it works. It just works. And so these little adaptations are how I navigate the world. [PAUSE]

VALLAS: But you were sharing why you decided to go to law school and it was very much a survival strategy as you were describing it.

CORTLAND: Yeah, I realized pretty early on that I was going to need to be able to understand and speak both enough medicine and enough law in order to force the health care “system” quote, unquote to provide the sort of care that I need in order to stay alive. And I did that and then got even sicker after graduating. But when I was able to practice, my practice really focused on individuals who need health care, complex, expensive health care and whose insurers just didn’t want to pay for it. And that complex appeal of an insurer’s denial of medically necessary care is where I focused my work. And it became clear over a few years that that sort of retail advocacy, helping one person at a time, it was absolutely vital, it was necessary, it was good work to do but it was insufficient. The system kept breaking more and more and more and more people would come to me for help and at a certain point, I’m just one person, there’s a limited amount I can accomplish. And I had started looking towards more systemic advocacy efforts. And then last year the Trump administration made my decision for me when they spent the spring and summer trying to repeal the Affordable Care Act and gut Medicaid and as someone who’s alive because of Medicaid and is still covered because of Medicaid, that was an existential threat to my survival. And so I dropped everything and got in my car and drove down to one of the first big rallies to save the ACA and marched and started speaking out publicly on Twitter and then Mike Pence said something on brand for Mike Pence, which is that somehow sick people deserve to be sick. And I stayed up until 5 o’clock in the morning putting together a little video with some photos of young Matt and hospitalized Matt and sick Matt and it went viral as the kids say these days. And the response was overwhelming and the encouragement and support from the chronic illness community, the disability community meant a lot to me and also told me that this is something I need to keep doing to speak publicly about the struggles that so many people are facing and going through privately and are shamed into silence. And that wasn’t something I could tolerate anymore.

VALLAS: Now you and I actually, when we met was actually a few months ago, you were in DC for something and Cokely and I ended up realizing you were in DC and we’re like oh my God, this guy that we’re both obsessed with on Twitter is a human and we have to meet him. I’m trying to remember when it was Cokes, I have no sense of time anymore in 2018.

COKLEY: I think it was in January if I remember correctly.

VALLAS: That might be right.

COKLEY: I think I was still pregnant.

VALLAS: You were definitely still pregnant. That sounds right.

COKLEY: So yeah, it was probably January or February.

VALLAS: And so you came into the office and I don’t think that I was at all prepared for how much I was going to connect and feel connected to you in just that first real life conversation that we had because we realized upon starting to talk about the work that we are people who have a lot that we understand about each other and so I am maybe not as public as I could be or actually want to be about my own experiences but I’m a gastro-person too for anyone who still doesn’t know that about me. I don’t have Crohn’s, I have, well it depends on what doctor you talk to, I have a lot of labels I’ve been given over the years but my stomach doesn’t process food the way that it’s supposed to and it causes me a lot of pain. It means that I live my life through my stomach as my mother put it when I was a child. And so peppermint oil, I feel you Matt. It’s part of my life too and Cokley was just saying before, she was actually noting that it was not that long ago, I think it was last week, I was literally dealing peppermint oil capsules over the bar counter at one of the neighborhood bars around our office to one of the folks there who was having some stomach issues, because that is so much part of my life that yes, I have handfuls of peppermint capsules just in my back pocket. But Matt, one of the things, and I want to say part of the reason I’m sharing this is because I do this work, I care about this community, it’s core to who I am but it’s also part of my life and that’s something that I want to start being a lot more public about. But part of why I thought it was so important to have you in this episode and Cokley thought it was so important to have you in this episode was because of how much the traditional concept of disability has not necessarily over the years including people in the gastro community and would love to hear you talk a little bit about and reflect a little bit about what it’s been like to be more public and to be out there and sharing your story when you’re not the traditional face of the disability community.

CORTLAND: Objectively strange, I am cis-het-white, a lawyer, dude, I read as those things, and I’m also someone who is alive and still covered by Medicaid, I am someone who survived law school dealing with a couple of very serious Crohn’s flares, some of which I spent a couple of weeks as an in-patient during my 2L year and I am disabled because I have Crohn’s disease. There are tens of millions of Americans with chronic illness. There’s 140 million with multiple chronic conditions. [PAUSE] So I just took my headphones off because if I keep them on I am going to vomit all over your sound board and I don’t want to do that. [LAUGHTER] So I will rely on the fabulous talent of the Off Kilter staff to adjust my sound levels.

VALLAS: Will is saying thank you for not vomiting on his soundboard but also — -

URQUHART: It’s not my soundboard.

VALLAS: That’s true, that’s actually true. That’s a great point. But still, I actually appreciate you verbalizing that and that’s part of what’s going on right now.

CORTLAND: And I really appreciate the fact that I can hear. Those spaces are so rare as a person with a chronic illness trying to navigate higher education, trying to navigate being a lawyer, trying to navigate doing advocacy work even. There isn’t a lot of intentionality around creating spaces that are welcoming necessarily to chronically ill people and I don’t think that that’s intentional, it just seems to me more of an oversight than actual malice.

COKLEY: Well, this is Rebecca Cokley and I think one of the things that was continuous struck me in the work that we’re doing here and the work that we really started trying to build up doing the Obama administration was really rethinking space. And how do we reclaim space? And when we think about accessibility we think about ramps, we think about buttons on doors, but we doing think about saying OK, we’re in this room, if you need to get up and stretch if you need to flap, if you need to go and lay on the floor for a moment in order to maximize your ability to participate.

VALLAS: If you need to leave and go to the bathroom, raising my hand for that one.

COKLEY: If, Xiomara this morning, at our launch event, the amazing daughter of Elaina Hung wants to get up and dance on the stage because she’s comfortable doing that, hell yes that’s what this space is there for. The ADA was not written to keep people with disabilities functioning by society’s rules. It was designed to flip society, to make society more access to the disability community. And I think so many times we get caught up in sometimes our own internalized ableism about what can I do in this space? What is appropriate in this space, versus owning and saying how do I make this space my own?

VALLAS: Well there’s a performatory aspect to it.

COKLEY: Well definitely.

VALLAS: You have to sit into a certain box and I do a lot of that. I’m being open about this, I don’t talk a lot about this but people may have noticed I drink a lot of shakes, I drink a lot of fluids and you don’t see me eating all that much food. Well Matt, one of the first conversations we had actually sitting in my office that day was about how neither of us had eaten solid food is a couple of days. That was not something that I feel like I can share with that many people because they go, “Oh my god, oh you just need to eat a sandwich. Oh let’s get some food in you.” And it comes, like you said, not from a place of malice, I know it comes from a place of love and of concern but it’s this total, it’s this project of the norms and the structures that we’re also told we need to fit into all of the time onto people for whom those don’t work. And this is a huge part of why I so enjoyed you on Twitter before getting to meet you in person was that so much of what you talk about, and it’s real talk, and it’s moving, and it makes a lot of people uncomfortable and that’s part of why it’s so important. It’s about moving past the notion of charity or of pity, oh those poor disabled people, those poor people with those chronic illnesses and getting to a place about talking about this about rights, about justice and about like Cokley was just saying, how do we change society rather than telling people that they need to be the ones who change.

CORTLAND: I start with broadening the public conception of disability to include chronic illness. The Americans with Disabilities Act and its amendments in 2008 if I recall correctly, really defined legally disability in such a way that many, many, many chronic illnesses qualify legally as a disability but disability as a word, as a concept, as a construct has been stigmatized, that people who may meet the definition under the ADA, may meet Social Security is very, very restricted definition of disability for Social Security Disability Insurance.

VALLAS: Which almost no one meets.

COKLEY: Yeah.

CORTLAND: No, they do not, Social Security is claimant hostile and a incredibly difficult agency to navigate. I was awarded disability benefit because I am a lawyer and I spent four months preparing my case with the same level of care, attention to detail and work that I would put into a Supreme Court brief. Because that’s what it took for the Social Security Agency to look at someone as young as me and say we’re going to actually grant your request for disability because you are disabled and you have provided overwhelming evidence that you’re disabled and so I am the exception there. But in addition to making Social Security less claimant hostile, I think where we start is trying to broaden the conception of disability so that more people are comfortable identifying as disabled who are disabled. And with that identification comes a whole host, a raft of legal protections that the ADA affords that the IDEA affords, the Rehab Act affords. And I really, really believe that’s a tool that we need to use more as a community.

In law school I was discriminated against on the basis of disability, by my law school, by legal professors who are members of the bar, the great and the good of the legal profession would do things like tell me that I couldn’t leave to go to the bathroom during class and at that moment my choice OK, do I get up and walk out anyway, do I say you know I have Crohn’s disease and inflammatory bowel disease and that this is a medically necessary thing and I have the right to do this because the ADA gives me that right, or do I just sit here in shame? And shame seemed the least appealing option to me. And so the first time I just walked out anyway and then afterwards I said the ADA says I can go to the bathroom, I have IBD. When that was ignored and it happened again just in front of the entire class, my classmates in law school who are very concerned with prestige, image and standing and getting a job that paid 6 figures to pay off all their law school debt. Folks didn’t look at me the same way after that and that discrimination, that prejudice, that stigma, I don’t have the answer for how we solve that, all l know is that what I can do is talk publicly about the experience of being chronically ill and disabled in hope that it reaches some people.

COKLEY: Well it was really interesting, last year when I was at the national conference for the Women’s March in Detroit and we were doing plenary panel talking about these next few years and what we have going forward. And one of the conversations, I openly asked, we were in a room with about 4,000 people in the audience and I said how many of you consider yourselves people with disabilities and maybe about 20 raised their hands. And I said how many of you have been to a therapist in the last year, more hands went up, I’d say a couple hundred hands went up. And I said how many of you have a daytime television pharmaceutical lifestyle? And they sort of looked at me, and I said if you’re at home at 11 o’clock watching game shows and pharmaceutical ads come on and you take one of those drugs, if it’s a biologic, if it’s tied to a neuromuscular disease, if it’s mental health medication, how many of you are part of that crew? And a lot more hands went up. And I said how many of you live with migraines, how many of you have IBS, IBD, Crohn’s, chronic fatigue, fibromyalgia, and literally it got to the point where about ¾ of the room had their hands up.

And I said great, because there’s this thing called the ADA [LAUGHTER] and it’s been around for 28 years like ding dong, hi! I’m here to share the good word of the Americans with Disabilities Act! Meanwhile congress is trying to destroy it. And we could really use your help right now. And one of the things that really struck me is it’s not only how do we help folks outside of the typical category of the disability community, whether it be sensory, physical, mental health, learning disabilities, etc., widen the tent to be inclusive of folks with chronic health conditions and at the same time how do we help folks with chronic health conditions understand and learn about their rights under the ADA? And how do we create a table where we bring both sides and say we can get on the same page, there are things that we can be doing together and we fundamentally, especially times like now we need each other more than ever if we’re literally going to survive these next few years.

VALLAS: That’s part of, God I wish we had all day for this, oh my God, I’m looking at the clock and I’m like how are we already running out of time. Well Matt, we’re just going to have to have you back. Part of what I found so powerful, I know many people found so powerful about the healthcare fight was the moment where because there was this direct full frontal assault on protections for people with preexisting conditions, you had this moment in the fight where people started to realize that if we could all raise our hands and say I have a preexisting condition, I think actually the hashtag became #IAmAPreexistingCondition people started to realize wow, this is an ‘us’ it’s not a ‘them’ and there was such power in that moment and that was part of why I think progressives were successful in protecting the ACA and stopping Medicaid from being dismantled was because people saw themselves in the fight as opposed to thinking they were fighting on behalf of someone else but now that we’re, we’re still fighting that fight, the ACA is very much still in the crosshairs, so is Medicaid every single day for reasons we talk about on this show all the time but part of what is so interesting and challenging and frustrating to me but I’m curious to hear both of you weigh in on is that’s not something that we see translate into the ‘D’ word, into disability.

We don’t have people all seeing themselves in that in the same way and some of that, I think you’re right Matt, is about stigma but there’s also another side to that coin, which is I’m one of these people, there’s reluctance that some people experience and I know I feel this, to identify as a member of the disability community because I’m not sure what people would say in the community. People I love, people I work with, if I were to use that kind of language to describe living with a chronic illness. And that’s something I know that you’ve experienced Matt.

CORTLAND: Absolutely. And I would say that first, if we are to realize the recognition of health care as a human right in this country, we’re going to need as many people fighting for the recognition of that right as possible. And the disability community I hope will be as welcoming and as open to folks who identify as having a chronic illness as it really ought to be. And it’s a win-win for everyone, I don’t understand the reluctance to exclude people who like you or me, are chronically ill, maybe with a GI issue, maybe with mobility, sort of RA pops to mind. I’ve had school tell me that a child with RA is not disabled.

VALLAS: Rheumatoid arthritis.

CORTLAND: Rheumatoid arthritis, yes and we just need that tent to be as big as possible because it is such a fight, it is so tiring to try, even as an individual person navigate health care in this country. I hope, I hope that before I’m dead we will recognize health care as a human right and my hope, my pre-hope for that is that the disability community is welcoming of the chronic illness community and that there is less fear in reputational cost to publicly identifying as someone who is chronically ill and therefore disabled. I am incredibly heartened that you all are launching this disability justice initiative, I am sitting here in awe of you just being willing to talk about your own personal experience and I think that is incredibly important. People often ask me what can I do? I don’t have a lot of money, I’m chronically ill, I can’t go march. And I think the movement needs to be accessible and one way that the movement can be accessible is by folks who are chronically ill and disabled speaking out and being supported by other people and having their voices lifted up. And that’s something that’s starting to happen and I hope continues to happen.

VALLAS: Cokes, I think you’re going to get the last word.

COKLEY: Honestly, we’ve been talking a lot today about people that we have felt were in the space with us, somebody stopped me this morning and said, I feel Justin Dart here in the room. Congressman Major Owens’ former chief of staff [INAUDIBLE NAME] who is a longtime friend and ally pulled me aside and said I hear Major in this space. And someone that I hear who is still very much with us though as active as she used to be is Cheryl Sensenbrenner, whose husband is Congressman Jim Sensenbrenner. And Cheryl is the mother of the ADA Amendments Act, though never received nearly enough credit for it. I watched her walk that legislation from office to office to office on both sides of the aisle. And she was a woman with chronic health disabilities. I remember a time where a congressman refused to meet with her and she took her braces off and sat down on the floor outside of his office and his staff people came out and said what are you doing here? And she said I’ve been waiting to meet with him, we had an appointment he is late and I want to talk to him about ADA Amendments Act. And I will sit here and I will wait until he gets here.

Meanwhile, capitol security walked by and go Mrs. Sensenbrenner, is everything alright? Oh, I’m here to meet with this congressman and he’s not back to meet with me yet. So the buzz started picking up and mind you this 2008 so it was before twitter was really active and people started paying real attention to this Republican congressman’s wife who was literally enacting her own form of protest and demanding to meet with her own representatives to talk about this issue. And to me it was so clearly one of the most amazing acts of advocacy in the disability community for a number of reasons. Cheryl was amazing, Cheryl is amazing, is Republican and so many times I think right now we really struggle to find the bipartisan space in conversations around disability and specifically around healthcare. She is fabulous, the stories about Cheryl Sensenbrenner are long and notorious but the fact that she was a person with a chronic health condition doing this and very open and talking about her chronic health condition as a part of why she cared about this so much, and so there is a history for this and I think so many times histories within movement and we heard somebody say that Kerry Gray referenced this morning, histories of the inclusiveness of movements and history of the labor costs of movements, meaning who was doing the labor who was responsibility for the labor gets swept under the rug over the decades to really remind folks that we wouldn’t have the laws on the books that we have right now if it weren’t for folks with traditional disabilities and people with chronic health conditions working along side each other and working in solidarity.

VALLAS: Matt, thank you so much for coming in and we’re going to have you back soon and often and thank you for what you do, thank you for making it personal, for sharing things that are hard to share and for being there for me, it’s meant a lot to me on a personal level and you’re a big part of why I’ve started to feel like I need to be more public and more open about things that I have not always been public and open about. So I’m going to say that on a personal note. Matt is someone you need to be following on Twitter because you do, because you’ve heard him talking now and you understand why I’m saying that. And his handle is @Mattbc, he’s Medicaid Matt, he’s Matt Cortland, he’s a disabled chronically ill lawyer and writer and he’s someone I’m really honored to call a friend.

CORTLAND: Thank you both, you are an inspiration to me everyday and it is fantastic to see you in DC doing this incredibly important work and I’m just very grateful.

VALLAS: Don’t go away, more Off Kilter after the break, I’m Rebecca Vallas.

[MUSIC]

You’re listening to Off Kilter, I’m Rebecca Vallas still joined I am pleased to say by Rebecca Cokley, Cokes, thanks for sticking around.

COKLEY: Of course, I’m not going anywhere!

VALLAS: And you’re exhausted because this has been quite the week but deep fried twinkies that we are and only as this episode continues I have to say I’m getting energized, you’re even dancing. This is good, let’s do a little dance break.

COKLEY: I need to wake up.

VALLAS: A little dance break, a little dance break, wish people could see this right now because we’re doing the awkward Billy Crystal white man’s overbite dance from “When Harry Met Sally”, that’s kind of what we’re doing, which is mainly my signature dance move. You have much better moves than I do because you’re a Prince fan and also a lot cooler as a human. You’re just agreeing with me, you’re literally just looking at me and you’re like yeah.

COKLEY: Anything else would take too much energy.

[LAUGHTER]

VALLAS: So, I’m getting energized and part of the reason I’m dancing a little bit is because we are now joined by one of my favorite people and one of your favorite people.

COKLEY: Yes!

VALLAS: A friend of the show, Andraea Lavant, a fabulous badass disability advocate and activist who is no stranger to this show. Draea, thanks for coming back.

ANDRAEA LAVANT: Of course, I can never say no to you guys. Both of you together is like, you know, heaven.

COKLEY: It’s too much, it’s too much darling.

VALLAS: We’re cross the streams actually.

COKLEY: We are crossing the streams, yes.

VALLAS: When you get the Rebeccas together.

LAVANT: No, that’s why I’m like it’s double.

[LAUGHTER]

VALLAS: So Drae, the reason we wanted to have you on apart from just the fact that you’re fabulous and brilliant everytime you open your mouth is for a particularly specific reason. So one of the things and the whole context of this episode being some of the hard conversations that progressives are not really down to have or don’t really know they should be having.

LAVANT: Exactly.

VALLAS: Which is a lot of why we’re launching this disability justice initiative. You can’t have this conversation without talking about the straw ban. And you actually brought some straws with you.

LAVANT: I bring straws everywhere now. I don’t feel like I have a choice.

VALLAS: And that’s what we want to talk to you about. So for anyone who’s not following this and is somehow not familiar with what’s going on with the straw ban. Give us a little bit of background about what the controversy is and then the reason we wanted to have you here for this is that straws actually really important to you.

LAVANT: Right, so the controversy, it’s real simple. There were pictures coming out with turtles in the sea being strangled of sorts with plastic. And so obviously we know that plastic and waste is important in our ecosystem but there’s been this movement to ban straws and Seattle has been the first [city] to actually ban straws publicly in restaurants. And then it’s come up recently here in DC banning straws in public places, specifically plastic straws. So for the disability community, there’s been a lot of in essence, the backlash that has come thankfully around this because we actually need plastic straws and there’s various reasons and various needs but in general, to completely ban plastic straws, it’s a big issue for us.

VALLAS: So you said and this is also something that I know about you but I think it’s helpful for people to hear this and understand it, you always have straws with you.

LAVANT: Yes.

VALLAS: Why? Why are straws important for you and for other people with disabilities?

LAVANT: Right, so we were having a conversation this is ADA week and we were having a conversation earlier for different people, different needs. But I know for me I have a physical disability so I’m a full time wheelchair user and with my diagnosis being Muscular Dystrophy such that I have pretty significant muscle weakness. And my disability has progressed in such a way that I actually cannot hold a cup to get a cup to my mouth. So physically if I’m at a restaurant or at an event, if there’s a cup on the table I don’t have the strength to get the cup and especially to tip the cup. So I need a straw and quite frankly Starbucks has been one of the big initially people to sign on and I love Starbucks straws the most because they’re the tallest. Needing a long straw a lot of times

VALLAS: And that’s actually what you brought with you to the studio.

LAVANT: Right so I brought, exactly, I brought the long straws and it’s actually, they’re not easy to find. So anyway for me, there’s that piece and of course then people start coming up with all these alternatives, what about the reusable, what about paper, what about metal, and so there’s issues with those and I can go into those but plastic is important.

VALLAS: I think it’s helpful to get into some of those details. So a lot of what you’ve seen on Twitter, to be super real talk about this, this has been horrifying to watch and some of it I became the subject of a lot of trolling that I know a lot of folks who’ve been speaking out on this for a lot longer have been experiencing for weeks and months because I posted one tweet, one tweet that was like y’all there’s some stuff you don’t understand about this and maybe you should get educated before you support the straw ban. And all kinds of people coming out and able-splaining to people with disabilities, well actually maybe you just don’t know that you should be doing something different as though you don’t know what works for you. So why don’t those other things work?

LAVANT: So paper straws for example, then disintegrate and I know for me, I don’t drink fast, so if you put a paper straw in a drink, it’s going to suction together or it’s going melt and you’re going to have little pieces and then you’re going to risk chocking, so it’s a life and death thing. People act like it’s not a life and death thing but it really can be. The metal straws issues in hot drinks that also, one of the funniest things that actually that I read, so metal straws have to be cleaned. Anything that’s reusable has been cleaned. I go out in the day, I’m independent, I don’t have someone going around with me so if I need to wash a straw, how am I going to actually do that? Both dexterity wise, access wise, all of that, so those are just a couple of examples. Do you want to say something?

COKLEY: Yeah, this is Rebecca Cokley, do you think also, there’s this real push back this kneejerk is all sort of around, individual responsibility versus saying let’s make the world more accessible, saying no you are responsible, you have to be the one that’s responsible.

LAVANT: Bring your own.

COKLEY: Bring your own.

LAVANT: Bring your own, and to me that’s an economic thing. I’m grateful that I can go on Amazon with my Amazon Prime and buy some plastic, but it’s not actually my responsibility. I should not have to supply, I mean do you bring your own chair to restaurant? I bring my own chair actually but so those types of things, it’s about coming together in that way. It’s a right I think.

COKLEY: It disproportionately targets the disability community also is a low income community. Brittany Packnett, whose one of the founders of Operation Zero, and senior leadership over at [Teach for America] and a big leader in the movement for black lives has been actively tweeting data in the last week on the economic status of people with disability and was like y’all are sitting here as environmentalists blaming disabled folks, telling them they have to bring straws but you don’t know how many cents to the dollar that they make. You don’t understand the unemployment rate of people with disabilities. You’re putting additional burdens on them for them to be out in society.

LAVANT: Exactly, exactly.

VALLAS: And it fundamentally becomes, and this is not histrionic but I think we need to be saying it in these terms so people start to understand it in these terms this is fundamentally an accessibility issue. This is about whether people with disabilities actually are functionally and in practice able to go out to restaurant.

LAVANT: Yeah, it is.

VALLAS: Fly on an airplane, go to a coffee shop. All of those things because being able to drink water to survive or any other beverages or in the case of people who use straws to consume food that’s in liquid form.

LAVANT: Exactly.

VALLAS: It’s literally about whether you are allowed to go somewhere and have the privilege of being able to survive.

LAVANT: The other big frustration that as I was reading though comments.

COKLEY: Never read the comments!

LAVANT: You shouldn’t read the comments, I know it’s horrible. And yet sometimes I’m like wow, is this whole concept of really independence. There were so many people that were like, well they have somebody with that.

COKLEY: Yes I saw this!

LAVANT: I was like are you seriously right now? Every person with a disability that goes out always has a person, a companion, I was like –

COKLEY: Where do we sign up for these mininons of which they speak? I want my minion, minion come, sew my clothing!

LAVANT: Yeah, and clean my straw.

COKLEY: Yes, clean my straw.

LAVANT: So that was shocking to me. So there’s been a lot of things that I was like wow, I couldn’t believe, but I think Alice Wong from Disability Visibility Project, when she wrote this article for Eater, one of the significant things that she said was if restaurants can supply four different types of milk, then –

VALLAS: Almond milk, goat milk, soy milk —

LAVANT: Yes, then seriously can we not get some straw alternatives to, I personally, does everybody need plastic straws? Perhaps not, but can you have some available then yes because if you can provide four different milks then you can provide four different straws.

VALLAS: I think the thing that is just so frustrating to me about, and I want to zoom out a little bit, why we’re talking about this because the straw ban itself is really significant on it’s own, but it’s symptomatic of a bigger issue. Which is well intentioned progressives and I’m calling out my brothers and my sisters here because sometimes we need to be called out when we screw up. But well intentioned progressives getting together and saying oh man, we know, we need this thing, we need this policy and then not actually talking to people that they don’t even realize it’s going to impact and because people with disabilities aren’t at the table where those conversations are happening you end up with this inadvertently ableist policy making and then it becomes this false choice. You’ve got the environmentalists going oh, but you people with disabilities are ruining the environment and we need a choice as those there’s actually some choice we have to make between accessibility in 2018 and saving the environment. And you’ve got folks with disabilities being like actually we’re just asking to find a solution here that’s both good for the environment and also doesn’t mean we aren’t allowed to be in public places because that’s really what this comes down to.

LAVANT: The other thing is it’s just diversity within disability. So for example, I was on a segment the other day where the person who represented an environmental organization said something to the effect of we honestly didn’t necessarily consider it but we had somebody with Cerebral Palsy on it, and it’s like there’s one person, you get one person at the table and that person is supposed to know it all. And I think it’s people just like myself, I can’t necessarily speak to the needs of other people that need straws, I can tell you why I need them. I’ve seen so many different, I’ve learned so much myself. Oh man, I didn’t think about X, Y, Z, fact for needing a straw but that’s right significant. So we’re all being educated in this but it’s about having multiple voices even when it comes to disability at the table.

COKLEY: No definitely and I think it was interesting I was talking to a journalist this last week who had told me that he went to his corner store just to ask for different types of straws. He’s a longtime DC resident and so I went around the corner to my corner store and was like I’d like to get some paper straws please. And he’s like they looked at me like I was from another planet. So you’ve got silicone straws, you’ve got metal straws, what kind of straws do you have here? And then he was telling me that you’ve finally located these different types of straws and was doing taste tests at home almost, it reminded me of the Coke/Pepsi test, but he was like I was lining them up and I didn’t think about this until I had them in front of me. And thinking about the different types of disabilities and the different types of access needs for different communities. And you’ve mentioned the sterilization, some folks require, with autoimmune disabilities and compromised autoimmune systems need to have sterilized straws.

LAVANT: Exactly, exactly.

COKLEY: And it’s like oh are you now expected to bring, are we going to mod-ing instapot on the back of your wheelchair? So you boil straws as you’re going through town? Then they’re going to get mad because you’re going to need electricity to do that so we’re going to need a solar paneled instapot, mounted on the –

LAVANT: The back of the chair.

VALLAS: You guys, we figured it out then.

COKLEY: There you go. And your minion, no, no because remember you have your aide with you everywhere we go.

LAVANT: That’s going to do it everywhere we go.

COKLEY: Idris, can we call him Idris, I’d like imagine Idris Elba as your aide, so Idris Elba can go with you have it.

LAVANT: There you have it.

VALLAS: I mean, I’m personally fine imagining Idris Elba doing anything.

LAVANT: Going around with me every where.

COKLEY: Your aide Idris will boil your straws.

VALLAS: Idris, come boil my straws!

LAVANT: Literally for that.

VALLAS: So for anyone who is interesting in learning more about this issue, I would highly recommend a particular hashtag and that is #SuckItAbleism. Obviously a few meanings in there but there’s a lot there, there’s a lot of voices on Twitter, Adraea is one of them, Alice Wong was mentioned, Emily LaDau, a bunch of folks who have been doing some really great educating, but I also just want to acknowledge that part of what’s been I think particularly horrifying and gross about this whole debate is the fact that people with disabilities have been put in the place where they are obligated to explain why they need the straws in the first place. And you’ve got all these Twitter exchanges that are just so gross, where it’s people being like oh yeah? Well why do you need this? And it’s all this having to prove and explain in ways that are really personal and that you don’t have any obligation to share with anyone on Twitter or elsewhere.

LAVANT: It’s true, it’s really true and I think that it’s been an interesting conversation that I’ve even had in the disability community for those with so many other things going on we’d probably wish to focus on, to have to take time right now in this day and age to focus, I would love to be focusing on other things but at the end of the day like I said earlier it’s still a life or death matter, it really is and it’s a right that we have. So this is where we have to focus to ensure that it happens.

COKLEY: The straw ban is the straw man but we still have to fight it.

VALLAS: Ooo, a good place to leave that. So Andraea Lavant is a badass disability advocate and activist and a friend of the show who we’re going to have to back soon because as we shared earlier in this episode the disability justice initiative will be taking over Off Kilter on a regular basis.

LAVANT: Awesome.

VALLAS: Drae, you better be ready to come back.

COKLEY: Yes.

LAVANT: You know I’m here whenever y’all call.

VALLAS: Well we’re going to totally exploit the hell out of that because always love talking with you.

COKLEY: Definitely.

VALLAS: And that does it for this week’s episode of Off Kilter, powered by the Center for American Progress Action Fund. I’m your host, Rebecca Vallas, the show is produced each week by Will Urquhart. Find us on Facebook and Twitter @offkiltershow and you can find us on the airwaves on the Progressive Voices Network and the WeAct Radio Network or anytime as a podcast on iTunes. See you next week.

This program aired on July 26th, 2018