Flying While Disabled

This week on Off-Kilter, it’s another Disability Justice Initiative takeover, holiday edition!

To kick off the holiday season right, Rebecca brings in an all-star, good trouble-causing, fire-emoji throwing panel for a far-ranging conversation about flying while disabled (spoiler: it really sucks), navigating the holidays with eating disorders and GI conditions, the insidious dangers and unintended consequences of those feel-good charity stories that blanket news outlets during the holidays (aka inspiration porn), why election day should NOT be a national holiday, and more.

This week’s guests:

• Rebecca Cokley, director of CAP’s Disability Justice Initiative
• Azza Altraifi, research associate, CAP’s Disability Justice Initiative
• s.e. smith, deputy editor, TalkPoverty.org

For more on this week’s topics:

• For more on why flying while disabled sucks, check out flyingwhiledisabled.com, which chronicles disabled travelers’ all-too-common nightmare experiences
• For more from Azza Altraifi on navigating holidays with an eating disorder, check out this piece on eating disorders and [Muslim] holidays, specifically Ramadan
• Read more from s.e. smith on why feel good holiday charity stories “are actually just a symptom of a crumbling society”
• Learn more about why voting while disabled sucks in this oldie but goodie by s.e. smith — and then check out this ABA Journal article for more on guardianship and voting rights
• Bonus round, a super disablist article on California’s incredibly disablist conservatorship policy
• Check out the fantastic feeds of @punkinonwheels, @coffeespoonie and @Imani_Barbarin, who all get well-deserved shoutouts in our conversation

This week’s transcript:

REBECCA VALLAS (HOST): Welcome to Off Kilter, the show about poverty, inequality, and everything they intersect with, powered by the Center for American Progress Action Fund. I’m Rebecca Vallas. And this week I am especially excited that [DRUM ROLL NOISE] that’s my terrible attempt at a drum roll, I’m going to need help with this, give me a drum roll, guys!

[DRUMMING ON TABLE]

Much better. It is time for another takeover of Off Kilter by the Disability Justice Initiative. And to that end for a special holiday edition of the DJI takeover of Off Kilter I have with me three total friggin’ badasses who I am so honored to get to work with and two who are making their first on-air debut, first being what debut implies so that was a little duplicative there but you knew that. Their on-air debuts for Off Kilter and I’m going to let you guys go ahead and introduce yourselves and say a little bit about yourselves as you do it, s.e. I’m going to start with you.

s.e. smith: Oh thanks, so I’m s.e. smith, I’m the deputy editor at TalkPoverty, I am a disability journalist and general troublemaker and I’m excited both to be on Off Kilter and new to the CAP family.

VALLAS: A lot of snaps going on as you describe yourself as a troublemaker. And Cokley, people know you but who are you?

REBECCA COKLEY: Rebecca Cokley, I am the director of the Disability Justice Initiative and I am thrilled to be wrapping up year one here.

VALLAS: Welcome back and DJI’s crushing it so thank you for everything that you’ve been doing. And also in the DJI lane we have Azza. Azza, tell us who you are.

AZZA ALTRAIFI: Hey y’all, I am Azza Altraifi, I am a research associate at the Disability Justice Initiative, like s.e., always getting in some good trouble and I’m also an organizer in the D.C. metro area.

VALLAS: So thrilled to have all of you guys hanging out in the radio studio and also just wanted to acknowledge that we just before we started taping we did a four straw salute, so here we have our straws ready to go in the studio. So we’re ready, we’re ready to do this. So we were talking a little bit about what the holidays mean to us and what kinds of things we think about and talk about around the holidays that other people don’t necessarily bring up or think of as holiday conversations. So listeners warning, this is not going to be your average holiday episode of whatever other podcasts and radio shows you listen to but we’re going to do this one our way. So with that, I think one of the things people think about related to the holidays and I know I’m already starting to stress out about it because I haven’t gotten my flights yet for where I’m going, but is airplanes, getting on the plane, going where you’re going to spend time with family or do whatever it is that folks do around the holidays and a piece of that conversation that almost never comes up or even is really acknowledged by folks who maybe haven’t experienced this themselves is that flying while disabled sucks. It sucks and s.e. you have a lot to say about this because this is something that you’ve seen first hand.

smith: Yes, I certainly have. In fact I just checked in for my flight tomorrow about five minutes ago so when I was coming out from California I had a layover despite my best efforts at getting a direct flight and I needed a wheelchair assist because there was no way I was making it across the Detroit airport in 8 minutes. So I requested a wheelchair in San Francisco and I got off the plane and there was someone standing there with a very nice wheelchair and I had this, I don’t think this is my wheelchair assist, this looks like someone with a passenger’s wheelchair and then they held up a little card with my name on it. and I was like I’m sorry is Delta using $4,000 sports wheelchairs now for wheelchair assists?

VALLAS: Would be nice.

smith: It would be much easier to push and so low and beyond they had tried to plop me in a wheelchair that did not belong to the airline but in fact belonged to another passenger. I declined, but this actually opposite scenario happened to a disability rights activist a couple of weeks ago who had her wheelchair given to another passanger and then the airline broke it.

VALLAS: And Cokley, I know this is something that you and I have talked about and you know a lot of folks who have experienced this, not just ever but even actually recently.

COKLEY: Oh definitely, I can say there is not a week that goes by where somebody isn’t on twitter talking about how the airlines have lost or damaged or harassed them about the equipment that they need whether it be a cane, a walker, a wheelchair, a scooter, a Segway, whatever it ends up being. And we see it repeatedly. It’s one of those things that the airlines don’t think of it in terms of the long-term economic impact of these things I think. When I ran the National Council on Disabilty I used to factor in an average of two weeks after every board meeting to deal with my staff having their wheelchairs damaged. And it was like OK, which one of my staff people coming back from this board meeting in Minneapolis or Detroit or San Francisco or wherever is going to be out of work for two weeks because the airlines will have lost their wheelchair or will have damaged their wheelchair. We’re talking about for people this means being unable to go to work, this means actually acquiring injuries as a result of using equipment that is not specialized for you and the airlines don’t, they treat it like baggage and it’s not baggage.

VALLAS: So this might sound like a stupid question but a lot of people listening might be going man, this is outrageous, I’ve never heard about this before. How are the airlines able to get away with this? This is absolutely reprehensible, how are they able to get away with this?

COKLEY: Well up until now we actually had not been, the airlines themselves had not been required to release the data on just how widespread of an issue it is. Furthermore, there is no public right to action so if you end up having them damage your equipment you can file a complaint but you can’t sue them. And I think that that’s something that I know that our colleagues over at Paralyzed Veterans of America and United Spinal have been pushing for a long time. And furthermore thankful we’ve really seen Senator Duckworth come into her leadership on this issue and push for the rule to go into effect that requires that airlines actually publicly publish this data about how many wheelchairs per year, how many scooters per year are lost or damaged by their own ineptitude.

VALLAS: Obviously that would bring us a major step closer to being able to at least build awareness around this problem if it isn’t going to actually solve it outright so a hugely important proposal on the table there from Senator Duckworth. But it’s not just that the airlines don’t really give a bleep, I’ll save you the bleep there Will, it’s often they actually take steps that affirmatively make it harder for people with disabilities to fly. One of those areas is actually to do with service animals, s.e. you were just talking about this the other day.

smith: So Delta coincidently the airline I am taking tomorrow just issued a new airline regulation regarding both service animals and emotional support animals. I’m not sure how many listeners are familiar with the distinctions here. Service animals are trained to perform a specific task or set of tasks to assist a disabled person so the classic that you see is a guide dog for someone who is blind or low vision. But you have seizure alert dogs and diabetic alert dogs and mobility dogs, you may notice I keep saying dog because dogs and miniature horses are the only legally defined service animals. Emotional support animals do not provide assistance in the sense of completing tasks for people. They provide, as the name implies, emotional support. So a lot of people with anxiety and depression and other mental health conditions find it really valuable to have an animal in their lives that is not a pet but is also not a service animal. And on airlines this has become a subject of recent controversy because people want to be able to fly with animals and avoid paying for it. Assistance animals are currently not required to have separate tickets. So you have emotional support peacocks, emotional support goats, emotional support snakes and this is has really blown up in the last year –

VALLAS: Wait, wait, wait, wait, I’m sorry, wait the peacocks piece, are you joking?

smith: I am not joking, Google it right now.

VALLAS: Stop, OK.

smith: I’m not even kidding, there is an emotional support peacock.

VALLAS: Keep talking because I’m actually going to Google this because you’re blowing my mind in other ways as you’re talking.

COKLEY: That takes ESP to a whole new level.

smith: Right? [LAUGHTER] So understandably, flight crews are really tired of this, a lot of passengers are really frustrated by it, especially passengers with allergies because you get on a plane, you don’t expect a chicken in the seat next to you and so the airlines have been really going back and forth on what to do about this and when you get a major carrier like — you found it, didn’t you?

VALLAS: I can’t make my face stop doing this right now because I’m looking at the emotional support peacock stories, this is real, OK.

smith: It’s a thing.

VALLAS: It’s a thing.

smith: So Delta has now announced that there are no emotional support animals allowed on flights of more than 8 hours and this is a safety concern is the argument that the airline is making. I would not that you can still fly pets on long haul flights if you pay for it, either under your seat or in the hold which I do not recommend. They also say that puppies and kittens listed as emotional support animals that are under four months old are also not allowed and quote, unquote “service animals” under four months are not allowed and I feel like Cokley and I looked each other like there’s no such thing as a three month old service dog.

VALLAS: Because there just isn’t you can’t actually be qualified to be one if you’re that age as a dog.

COKLEY: Yeah, the amount of training you’re talking about several years of training for a dog, it’s almost like saying you’re not allowed to be an astronaut at age 6.

VALLAS: Gotta pass that into law.

COKLEY: NASA has now decreed a rule that you will not be able to be an astronaut by age 6, so sorry Billy, you have to wait.

VALLAS: Free idea for Republican lawmakers looking for stuff to do that doesn’t need to be done.

COKLEY: Too much regulation!

VALLAS: Yep, there we go. But s.e. to your point about animals still being allowed to fly if you pay for them and if they’re not actually a reasonable accommodation so you can fly, that really just flies, so to speak, oh I really just said that, right in the face of the idea that this could have anything to do with safety.

smith: Well that too and it’s also a way to stigmatize disability and something that we’re seeing more in recent years is that this insistence that service animals have to be certified and have paperwork and it is not legal to require or ask for paperwork. Airlines can ask for a veterinary certificate which they’ve been requiring for quite a long time. But a lot of disabled people who are socioeconomically disadvanged have animals that they’re calling emotional support animals that could really be better classified as service animals. So when airlines do this they’re making it much harder for disabled people who need animals for accommodations or emotional support which is an accommodation to travel because it means any animals that you bring on an aircraft is going to get scrutinized.

COKLEY: We’ve even seen incidents where colleagues of mine, friends of mine, friends of the show here have been traveling with their service animal and had their service animal attacked on a plane by an emotional support animal. And they’re like but my dog’s an emotional support animal and it’s not my fault it bit the guide dog and it was like, this is going to get delightfully awkward. But there really is that whole conversation around the importance of training and at the same time we don’t want to sit there and further regulate people with mental health conditions that need these supports and services. And it’s that push and pull where yet again non-disabled people continue to treat disabled folks as if we’re getting something special. And feel like they need to push back on our rights, that our rights are something special. And they should be able to travel with their bichon frise for free, or their iguana for free or whatever it is.

VALLAS: Maybe a Pomeranian in there too for good measure.

COKLEY: Yeah it’s like come and live my life for a day and then let’s talk about this. But I really do feel like it continues to have that push and pull of we don’t want to overregulate people with disabilities and at the same time issues like this continue to come up. Friend of the show Mia Ives-Ruble often talks about well then maybe what we do is we start going to against the folks online who are selling false documentation and selling harnesses and all of these sorts of things that mock up physically, what the non-disabled world would believe physically represent or physically legitimize their animal as a support animal.

VALLAS: It’s the whole thing of hey, do you have a dog that you’d love to fly with for free? Here’s how to make them into an emotional support animal kind of thing.

smith: No literally websites will charge you $100 for an emotional support animal package.

ALTRAIFI: But I also think it’s really important to elevate, often people assume a service animal can’t possibly be for any kind of psychiatric disorder or mental health disability and that’s just not true. Many people with PTSD among other psychiatric disabilities, mental health disabilities need service animals to render life saving supports for them. And one of the things that this new rule is doing is it’s attempting to again drive a wedge between mental health disabilities as something entirely separate and perhaps not as legitimate a disability as other kinds of disabilities. And that’s really, deeply disturbing and it’s also as someone who has a lot of feeling about people trying to pass off emotional support animals when in fact they’re talking about pets and they really just want to get around paying a fee, the way to address that is not to burden disabled and multiply marginalized folks. And for me in particular as someone with a severe anxiety disorder who flies often, I deeply feel as someone who is Black, visibly Muslim, because flying with disabled sucks, flying while a disabled Black Muslim Afro-Arab women is the literally worse. Because when I’m anxiety one of the things that I can’t regulate is whether I’m speaking in English or Arabic but knowing very keenly that if I speak Arabic I seriously run the risk of being assaulted and thrown off a plane. And it’s those things about this is yet another layer that not only means that I might not be able to go to work or be impact in those ways but I’m facing the threat of bodily harm and criminalization on the basis of my disability and other experiences of marginalization and that’s just not ok.

VALLAS: A hell of a lot of food for thought for people I hope keep that front of mind for people as we’re sitting on planes and veterans get acknowledged and hey if you’re a veteran or an active duty officer please stand up and everyone claps on the plane and there’s all kinds of celebration when those folks fly and it’s well deserved and it’s important and it’s great. But it doesn’t at all start to scratch the surface of the tremendous double standard that you just laid out that’s the rest of the conversation people aren’t even aware isn’t being had. So we could talk about flying while disabled all day and –

COKLEY: We can talk about the groping next time.

VALLAS: Flagging that for the next conversation but another big theme around the holidays is of course the holiday table and all of the food traditions and eating and things that are almost synonymous in many people’s lives and traditions with various holidays. And Azza, this is actually something that you’ve actually done a lot of thinking about over the years because it isn’t quite as simple as everyone sitting down the table and being really excited about eating a bunch of festive food which is what you see in the Hallmark movies and it ends there. It can be really complicated, particularly for folks with eating disorders.

ALTRAIFI: It’s so fraught and I think the holiday season just generally for a lot of us can be really difficult and triggering times but particularly around holidays where so much of the way we celebrate it is centered on food, our relationship with food and then that becoming a space where people are really exploring many of the problematic ways we think about and regulate people’s relationship to their bodies. And I think again, given my lived experience as a Black Muslim woman in particular with an eating disorder who has anorexia and has been hospitalized for it I think it really speaks to the many ways in which we attempt to exert control over people. What is and isn’t OK for you to eat? Who is and isn’t entitled to nourish their body?

How do we talk about these things in ways that structurally make it so difficult for folks like me to actually ever be in recovery? Because it’s more than just a a relationship to food, it’s about the fact that for me personally, the reason my behaviors ever started was because I face the burden of existing every day in a deeply white supremacist ableist capitalist cis-hetero-patriarchy and in so doing I felt the weight of that and wanted to disappear, and the most effective way to do so was to not eat. And to then be surrounded by people who would so cavalierly every time the holidays come around talk about oh, if I eat this then I have to run extra or things like that and it’s like let’s tease that out. Why do we feel like you have to earn nourishment and why is it that that notion is ascribed to particular people? It’s just another way in which only certain lives are worth living, only certain bodies and body-minds have value and how can we continue policing that to maintain these structure oppressions and that plays out in really fraught ways for people with disorders who generally folks like me aren’t even thought of when we talk about eating disorders.

I’ve literally been told that at hospitals, I would be like forcibly institutionalized and then I get there and the psychiatrist is like you’re Black how do you have an eating disorder. And I’m like sir, first of all, you really should have another profession. [LAUGHTER] Second of all, that’s not how any of this works, but people who are trans and gender non-conforming, people who are not white middle class women or upper class women often find themselves unable to really chart a path towards recovery and a healthy relationship with food and themselves because of the way that we talk about eating disorders and because of really rampant fatphobia in this country.

VALLAS: And Azza a lot the, first of all, I can’t even, there isn’t enough snapping for all of that and I want to tease out two pieces before we bring other folks back into this. And one of them is that a big part of what people are probably thinking about when it comes to holidays and eating is lots of food all the time, big meals. But there are important holiday traditions that involve fasting, one of those is Ramadan and that’s been one that you’ve also faced some real struggles navigating with an eating disorder.

ALTRAIFI: Oh absolutely, it’s extremely difficult because this entire religious tradition of making our, showing our expression and our religiousity through abstaining from food. Obviously for someone with anorexia is something very difficult for me to do in a way that’s actually healthy and constructive. But it also has prompted a lot of really amazing conversation in the disability community that’s Muslim because we’re been able to explore that God loves all of us, right, and that the most highest created me the way that I am. And maybe there are other ways in which we can exist in the world that validate our religious experiences and don’t force us to conform to folks who don’t experience this disability standards of what it means to be a good Muslim, a good person, a person who is worthy of eating or not or eating at particular prescribed times. So I haven’t fasted Ramadan in I think five years and that’s a hugely taboo thing to say in the Muslim community. But what’s really incredible to me is that our own faith tradition explicitly says this is not something that everyone’s expected to do. This is one of the ways in which you can demonstrate your faith, but here are multiple alternatives. And it’s just another way in which ableism pervaids all religious communities, all non-religious communities and all spaces and how we can start acknowledging that and then moving towards dismantling those structures instead of trying to force us to confirm to things that we can’t.

VALLAS: One of the other things that I want to pull out from what you just said is something that we’re going to have to do after the break so don’t go away, more Off Kilter shortly but here’s a break that I didn’t ask for but we have to do.

[MUSIC]

You’re listening to Off Kilter, I’m Rebecca Vallas, this is the Disability Justice Initiative takeover episode of Off Kilter, special holiday edition. I’m talking with s.e., Rebecca Cokley, I’ll call you Cokley and Azza and we’ve been talking a little bit about eating disorders around the holidays, a conversation that almost never gets had. and Azza right before the break I was about to bring up and Cokley, I want to bring you in as well, people might be wondering what do eating disorders have to do with disability? That’s not something I think of when I think of disabled folks. Are eating disorders a disability and what would you say to folks who pose that as a question?

COKLEY: Eating disorders are most definitely a disability. When you talk about the activities of daily living and things that impact your life, eating is one of those fundamental things, socialization is one of those fundamental things. And I think traditionally, it’s been a disserve by the disability community in not creating the biggest table for a lot of these conversations around disability policy and in failing to do so the eating disorder community often gets cast aside, often gets left out and we don’t talk about it. we don’t invite them to the conversations, whether it be about policy, whether it be about social fights that we’re engaged in and it really does a significant disservice to the diversity of the conversations that we’re trying to have and to our siblings from those communities.

VALLAS: And Azza, I want to both validate a lot of what you’ve shared in terms of your personal experience and add that I also identify as a person who has struggled with an eating disorder myself in the past, I’ve talked about this on the show. That’s got a double edged sword for me because I’m someone who lives with a chronic stomach illness and that makes it very hard for me to process food, two of those interact in pretty significant ways that are probably obvious to anyone who’s listening. But they are double trouble for me personally around the holidays when being with family, people wonder why you’re not eating and for me these days it’s a lot more about not being able to digest food like a lot of other people are privileged to be able to do. This is something I’ve had to navigate actually with my future in-laws who are a really big, wonderful Italian family who live to eat as they like to put it and who cook amazing stuff like homemade gnocchi and things that I can barely, I burn water guys, I do. And so tremendous respect for the cooking and then there I am with my plate filled up going oh my God, they’re going to think I don’t like this and I don’t like them and that’s not what it is. It’s I can’t actually eat because I’m having a flare up today and that always manages to happen at those times that are high pressure. So a lot that really doesn’t get talked ab out when it comes to food around the holidays, s.e., you look like you were able to say something.

smith: I was just glad that you brought that up because so many disabilities involve a fraught relationship with food, Kayla Whaley wrote an amazing series of articles about losing the ability to swallow and how that started to interact with her disordered eating because the thought crossed her mind well gosh, this could be a great weight loss opportunity and people in her life said that to her. And so as soon as you’re talking about eating disorders, sometimes a disability can set you up for real trouble because of allergies or digestion issues or dysphagia or other conditions that interact with your body.

VALLAS: Amen, go ahead Azza.

ALTRAIFI: Absolutely, as someone with chronic gastrointestinal issues, as someone with very lethal allergies it’s one of those ways in which these different disabilities interact with each other. And I think also to Cokley’s point earlier, one of the things that’s really difficult for us with eating disorders is we’re often faced with this feeling that I don’t deserve to recover because I’m not sick enough. So to then be excluded from the disability community is particularly harmful as we’re trying to find ways that we have a right to live and be here and exist and that we are deserving of love and care.

VALLAS: And community, and it’s certainly a reason I have not been more public about my own experiences in the past because I’ve been afraid of not getting welcome arms as the response. So there’s a lot more that we can talk about when it comes to eating around the holidays but I want to move us to our next topic because I know we’re going to want a lot of time for this one. And it’s inspiration porn, yay! So around the holidays folks might have noticed and this is not specific to 2018 in any particular way but boy is there a whole genre that crops up of shall we call it journalism? I don’t know that I would. Stories that run in news outlets that are all the feel good holiday charity, somebody had a hard situation and oh this charity swooped in to help and boom, that’s the end of the story and it feels really good when they click on the next link in Twitter or whenever they found the story and almost never do those stories include any discussion of any, you know, structural barriers and problems and policy failures that one person is not the only person who is being harmed by them. s.e., this is something you wrote about recently for TalkPoverty so take us where I know you want to go.

smith: So if you live in any kind of metropolitan area your local paper right now probably has a hardest cases or neediest cases or some sort of holiday chart appeal. And this is part of a larger thing where we exceptionalize individuals who are photogenic and have appealing stories. And use those to feel better about ourselves and the issue that I brought up at TalkPoverty is this kind of genre of very specific stories like boss saw her employee walking two miles in the snow to work so she bought her a car as opposed to giving her a raise maybe? Or you see school lunch lady felt bad for kid who couldn’t afford lunch so lost her job because she fed her and this sort of, we’re supposed to feel good about these stories? As opposed to seeing them as an indictment that we’re trapped in and the disability community in particular is I think is familiar with these stories because they’re basically year round for us. Waitress helps boy with Down Syndrome cut his burger, isn’t this inspirational! Or hospital forgives medical debt for person who lost the ability to walk after tragic horse riding accident.

COKLEY: There was a part this week, I’m trying to find it right now talking about football teams sees sad autistic boy and gives him a truck. And it’s been blowing up all over social media and it’s like, really?

VALLAS: That’s actually the new twists on this is that it used to be that it was just stories that ran in news outlets and that was the form but it’s increasingly become videos that end up going viral on social media. And I feel like just in the space of the last few days, all these videos that people are putting up being like oh my God, this is so heart warming. Oh, I’ve had my faith in humanity restored are the tweet captions, and the video is something exactly, Cokley, that you’ve just been describing that usually involves a child with a disability and that’s an extra layer to this who may or may not have given consent to this video ever being taken and I feel like a number of folks have pointed out if you’re video taping a thing that you think you’re about to go to for what you think are the right reasons, think again. And s.e. I don’t know if you have more to say on that point.

smith: So Kim Sauder, a Canadian disability activists has done really excellent organizing around this saying as a disabled person, I want to go out in public and go to the grocery store and buy my box wine and not have someone video taping me and putting me on Twitter and being like isn’t it so inspiring, the autistic in the grocery store got the good box wine, not the cheap stuff.

COKLEY: The [INAUDIBLE]

smith: And so these videos in particular feel super performative to me, it’s someone witnessing another human being suffering and instead of intervening, choose to tape it and be like it’s so sad that this veteran in a wheelchair was left alone at a bus stop. And you also have this very performative look at me helping this disabled person. And when the disability community pushes back on this and says oh actually this video is super racist and bad or this video is clearly non-consensual and the non-disableds get all up in our business.

COKLEY: Or the disabled person’s creepy, I remember the story last year of the deaf-blind man on the airplane and they were looking for somebody to be an interpreter for him and there was this really nice looking young girl who knew ASL who came and sat with him and everyone filmed it and it all blew up and the first thing he asked is, or the first thing he said is I hear you’re very pretty and he’s like over 40 years old and she’s a teenager. And I’m sorry but that’s gross! And that is not OK and I remember responding to it and saying first off, do they knew that you’re all actively filming this and writing this and a majority of the stories were from the perspective of other passengers on the plane or the staff on the plane or even the girl’s mother and it was like OK, wannabe Kris [Jenner], I see you for who you are in this space. And as a mom, as a disabled person it got me angry. As someone who’s grown up in the disability community who understands on a daily basis that we have yet to deal with our own baggage and our own Me Too and Time’s Up issues in our community with our creepers, that’s a whole other episode of [Off Kilter] and there will be listed names.

VALLAS: We’ll see and we’re going to talk to our legal department but yes please continue.

COKLEY: And as a parent of a young girl, as well I would never put my child in a position, the minute somebody says something like that me to my child, oh it’s over man. You can just sit by yourself and do what you need to do because this has officially crossed a line and I don’t care how inspiring this needs to be, this is not OK.

smith: Sometimes it’s unasked for help which is also super frustrating because then non-disabled people think that all disabled people want this assistance. And it’s so rare as someone who flies a lot, not [INAUDIBLE] travel back in, but often people see me struggling with my luggage in the overhead been and instead of saying do you need help they just grab my bag, which throws me off balance and I’ve actually fallen on planes before. A couple of months ago I was flying back from Detroit and this man said oh, do you need assistance and kept his hands away from me and my bags and my cane and waited for me to say yes, that would be very helpful, thank you.

VALLAS: The thought of asking first, so as people are taking away pro tips for flying around the holidays I feel like we’re creating a handy guide so that’s definitely on the list. But you’re describing how in individual moments where unsolicited quote, “assistance” can actually backfire and have the opposite effect. Your piece for TalkPoverty, the title of which is “Feel Good Holiday Stories Are Actually Just a Symptom of a Crumbling Society”, I think that’s about right, that’s a fair way to sum it up. And you actually write in this piece which is not disability specific but I think everything in there really applies to what we’re talking about here, you also talk about other very specific harms that come from this brand of news stories that might be less immediate in that moment in the aisle of the airplane but are really tangible.

smith: You kind of touched on this earlier, these stories avoid examining systemic prejudices and the issues that surround them and instead of saying this waitress needs a better wage or needs fair hours or this young working mom needs paid parental leave as everyone in the United States should have for as long as they want. The other thing that these stories tend to do is undermine attempts at achieving social equity because you say hey, we should pay wait staff not a wait wage because wait wages are bad and you get astroturfing campaigns from the restaurant industry getting fake waiters and waitresses saying I love my tipped wage, it’s just the greatest.

VALLAS: Save our tips, we’re looking at you.

COKLEY: And I think Imani Barbarin this last week said something about it that was really interesting, and Imani was like it also puts the onus on making society more just on the individual.

VALLAS: Yes.

COKLEY: Instead of saying this is an issue about wages, this is an issue about equity, this is an issue that the social safety net is being attacked on a daily basis by vampiric GOP’ers, or whatever it is. And instead saying it’s on you, the individual to go out and help another individual instead of saying no, why do we not make society more equitable, it’s that equality versus equity debate about instead of dismantling the systems that are not working for people, we’re going to put it on you to make things better.

ALTRAIFI: And to Cokley’s point I think moving beyond just the fact that it puts the onus back on individuals to find ways to counter these structural oppressions, it makes it so that the people who aren’t impacted by them don’t have to confront the fact that they too are complicit in the maintenance and perpetuation of those structural oppressions like ableism and all of the intersecting co-dependent structures and so I think we see that this continues to perpetuate no matter how many times we are all infuriated by it because really there is a lot of incentive for folks to not have to address, confront or ever acknowledge these structures were not designed with people like us in mind.

VALLAS: It’s a mechanism for not only not feeling complicit but also not feeling guilty and oh boy, do we love to absolve ourselves of any feelings of guilt, especially around the holidays when we’ve got plenty of that. I feel like it’s also important to note that part of what makes this genre of stories so explicitly dangerous is that in many ways it’s the unintentional, maybe even well intentioned in someone’s brain counterpart to the very playbook that we’ve seen be so effective and so sticky when it comes proponents of cutting assistance programs. For example, nutrition assistance or Medicaid or housing assistance, if the general worldview that folks are persuaded of that not having health insurance or not having wages that pay enough for you to be able to afford to rent a safe and stable apartment, if that’s a personal problem and that’s on your and it’s your fault, society and the government, we have no role to play here, it’s not anything we have to address and the same is true with these stories that then maybe unintentionally but have the impact of continuing to push that worldview that then does have very immediate policy consenquences. s.e., I’m going to plug your piece again because anyone who needs to know more and wants to know more should read it and should come away with hopefully feeling correctly outraged. So you’re listening to Off Kilter, we’re going to take a quick break, talking with my fabulous Disability Justice Initiative crew here, don’t go away, more Off Kilter DJI holiday takeover after this short break.

[MUSIC]

You’re listening to Off Kilter, I’m Rebecca Vallas, this is the Disability Justice Initiative holiday 2018 takeover, sitting here with s.e. and Cokley and Azza and we’re talking about inspiration porn because of course we are and that needs to get talked about this time of year. And s.e. you were actually about to connect this to a whole special new area of crumbling society that has become increasingly visible in the era of the internet and that has to do with health care.

smith: Right so we call it “Go Fund Yourself” around the office, this rise in medical fundraisers and there’s been an interesting parallel that I’ve seen coming up the last couple weeks of what I call medical debt jubilees. So the story is usually two retired librarians buy up two million dollars worth of medical debt and forgive and I see everyone including people who should know better circulating this as an inspiring story.

VALLAS: Oh my God yay this is so great, they just bought off all this medical debt, what’s wrong with that?

smith: Well first of all they shouldn’t have that medical debt

[SNAPPING]

VALLAS: Even Will’s snapping, Will, we’ve got you here, you’re in the crew now.

smith: So the thing to know about this, this is not a new thing, you can buy medical debt for pennies on the dollar, it is a very fast way to erase debt for people. The vast majority of medical debt is actually relatively small, those bills that get sent to collections are for less than $400 which for many listeners probably doesn’t sound like a lot of money. It certainly when I was a kid would have been an unimaginable amount of money. And so when we get this kind of medical debt jubilee and everyone gets so excited and it’s inspiring and wonderful. It’s like OK but why do they have that debt in the first place? What systems are failing that people are totally underwater on medical debt? And the other thing that doesn’t get addressed here is this is specifically hospital and clinic, it’s not people carrying debt on credit cards. And most people who have medical debt, which I certainly do, are carrying it on credit cards. I don’t owe the hospital any money because the hospital refused to treat me without a credit card. And so this is an aspect of this story that we aren’t getting to hear and then I log on and see 8 million GoFundMe’s for “I need a lifesaving surgery”, “I have a ton of medical debt”, “My wife has lymphoma and I need to stay home and take care of her”, “I lost my job because of my disability and I can’t get the surgery I need because I lost my employer’s health insurance” And we’re having a much larger experience in the United States but this doesn’t get into who we think deserves care.

VALLAS: And those — oh keep going.

smith: People should not be having to beg for money to get tumors removed, this is ludicrous.

VALLAS: And we shouldn’t just be sharing those stories full stop, they shouldn’t be feel good, they should be feel [BLEEP] because it’s evidence of the crumbling society that s.e. was describing, Cokes you were about to say something.

COKLEY: I saw a colleague, a twitter colleague, we should have names for twitter colleagues. I saw one of our twitter people and I’m blanking on the name because my phone just died who had posted about how they had been running me a GoFundMe, I think they were looking for trying to raise $10,000 over the last 3 months on GoFundMe, and a friend of theirs needed to get a wheelchair for their Pekinese and in quite literally two days –

VALLAS: Is this Pekinese a cousin of the peacock?

COKLEY: Probably.

VALLAS: Because I feel like maybe –

COKLEY: Literally got $25,000 and they were asking for $4,500. And so it was like we value giving, and I love dogs, I have dogs, my dogs are awesome, they’re two crank heeled men.

VALLAS: I can verify that.

COKLEY: Yes, but we’re going to buy the Pekinese a wheelchair, and give them significantly extra funding because how cute, that poor little dog shouldn’t have to, shouldn’t struggle, shouldn’t have needs, poor puppy versus somebody who’s trying to get back to work and trying to put it back together. And it’s that judgment as you were saying, who is the nice cripple versus who is the angry cripple. Or who’s the cute little cripple puppy.

smith: And the other thing I see coming up with disability fundraisers constantly is I almost made my goal for my wheelchair but then my friend really needed money to pay for her surgery so I gave her all my money, this happens constantly, it’s just like, I think there’s really just $5,000 that just circulates through the disability community.

VALLAS: It’s the same $5,000.

smith: From fundraiser to fundraiser as we’re all giving money to each other.

VALLAS: It’s the fruitcake that everyone regifts, it’s the same $5,000 so let this be, as another pro-tip to take away on your list, when you see these stories and when you see these GoFundMes, take these as evidence of the policy change and the systems change that we need because that is what they are. So we’ve got one last holiday related topic that we wanted to hit on in the last chunk of our time together and it’s a holiday topic is so far as it is a topic that should have nothing to do with a holiday whatsoever and this topic is voting and the reason I’m connecting that with that really awkward forced segue that I had totally gotten your guys’ agreement to use before I actually said it so I feel fine about it so there, now we’re all in this together, you guys are complicit. The reason that voting has to do or shouldn’t have to do with holidays has a lot to do with the conversation that is not the conversation we should be having around making sure that voting is accessible and something that people with disabilities are able to do just like anybody else. So s.e. I’m going to look to you to kick this one off because this is a doozy.

smith: OK well first of all we’re having a lot of conversations about how and when and where people vote right now. And I keep seeing very well meaning people saying election day should just be a national holiday because then everybody could go vote and it’s like OK, I worked in the service industry for a very long time, do you think I got national holidays off? No I did not. Do you think that the bus routes were limited because it was a government agency so it would have been impossible to take the bus to the polling place and get to work on time to open, yeah. So this really effects the disability community because so many of us are low-income, relying on public transit. If we work it’s often in low paying service jobs with limited flexibility. Oh, but everyone says we could all just vote by mail, it would be so awesome, your ballot would just get delivered to your house, you could fill it out at your leisure, you could send it back, we could even officially declare that you don’t need postage on mail-in ballots. So I guess someone who is blind is what, going to have their PCA fill out their ballot for them and hope that they did it correctly? Or someone who is in an economically abusive relationship with a partner who is taking all of their benefits?

COKLEY: Or someone incarcerated or institutionalized or who lives in a group home?

smith: Or someone who is house-less.

COKLEY: Yes, this continues to be a real significant issue, on the flip side electronic voting is also not always the answer, because a lot of times there’s still glitches and issues with those machines and some of that technology that we continue to see. And I think voting is one of those fascinating issues because it effects everyone differently, regardless of what type of disability you might have. For me growing up, my dad used a wheelchair from the time I was about a year and a half on and I remember him getting so mad every time we would go to vote because they would come out to the car and hand him his ballot and sit there while he would vote because our polling place was at a church. And he was adamant as an old school activist, I am going to go and vote because this is important to me as a citizen of this country. And I remember being like but dad you can’t get in and he’d be like yeah I know but I’m going to make them bring this out to me and I’m going to sit there and take my sweet time and make them feel deliciously awkward. And be like oh, Becca, my six year old child, what do you think about proposition blah blah blah, oh this is what it means, oh wait am I taking your time? You know it would be so much more expedient if you would just buy a damn ramp, like come on now.

Or for an example, we saw the case I think it was in 2016 in California with 20,000 voters under guardianship fighting to get their right to the vote back, as we just saw in Florida with the significant number of folks formerly incarcerated folks accessing the vote –

VALLAS: Well not yet, now they get it for the next election, I think we would have seen turnout very differently in Florida if they actually had had access to the vote.

smith: I know they’re already trying to reinterpret the language in that amendment to restrict who actually gets [INAUDIBLE]

VALLAS: Oh of course they are, of course they are.

COKLEY: We know that the data would tell us that roughly at least a third of them are people with disabilities.

VALLAS: That’s right, based on who we know is behind bars, who has disabilities. So you’re bringing up guardianship though, which is a piece that people might not be aware of. So Cokley, what does guardianship have to do with voting? I’m asking while you’re drinking through your straw.

[LAUGHTER]

smith: So there is a notion in the United States, there’s a very paternalistic system around disability and one of them is that lots of disabled people, we just can’t make decisions for ourselves, we’re not responsible with money, we don’t understand the consequences of our actions, we’re non-verbal, we just don’t really understand how things work so we need a grown-up to come in and look out for our own interests and this is what’s known as the guardianship system. So someone can go to court and say I don’t think Azza is mentally competent to make her own decisions, I think I deserve if not temporary guardianship, permanent guardianship and that means I get to decide control over her money, where she lives, who she dates, where she works, what she eats because she’s just not capable. And this system is weaponized predominantly against people with developmental disabilities and the mental health community.

COKLEY: I think a great example that’s probably most familiar to people outside of this room would be Britney Spears who I believe is actually still under –

smith: She’s in a conservatorship, yeah.

COKLEY: When she went through her mental health breakdown you saw her family step in and start to make decisions for everything from how she reared her children, where they went to school, what kind of food she had in her house and all those sorts of things and I think she comes obviously from a way different class angle than a majority of disabled folks.

VALLAS: A little bit.

COKLEY: But there’s also issues around the fact that there’s a lot of these folks in these guardianship roles make money off of being guardians for folks with disabilities. And so there is a vested interest, there’s a vested financial interest in perpetuating this power dynamic and perpetuating this systemic inequality.

VALLAS: Which can also then come with the consequences of taking away someone’s basic rights which includes voting.

smith: I think a good example that fans of the show are probably aware of is a case that was decided by Justice Kavanaugh.

VALLAS: Oh yes, let’s do this.

smith: Involving three mentally ill women, I think one had a developmental disability and their reproductive rights and the ability to consent to surgery or to refuse treatment.

VALLAS: The Doe case.

COKLEY: And to be informed about the procedures that were going to done to them.

smith: And the argument was well they can’t communicate so they can’t make decisions and if you actually look both at how that case was conducted, that is not true. All of these patients were capable and the developmental disability community and hopeful eventually someday the entire disability community will agree that everyone is empowered to understand and make decisions even as Liz told me once, sometimes you have to explain it to me a couple of times but you probably don’t know astrophysics, so where does that leave us?

VALLAS: And Azza this is right hand in glove with what we were just talking about before and about what some of what you were just speaking about before about some of the double standards that exist and the hierarchy of disability that can exist with real different treatment of people, depending on the type of disability that they have and second class and extra stigmatized in a lot of different ways, people who live with mental illness.

ALTRAIFI: Absolutely and I think as we talk about the ways in which communities are targeted their bodily autonomy taken from them, their ability to vote and participate in electoral processes judged because we assume that certain people are and are not competent. I think also of Native communities who often have all kinds of narratives presented about them and I think the crises of missing and murdered indigenous women, I think of the ways that disproportionately impact those communities are talked about and are presented as somehow a reason why native folks can’t participate, don’t deserve to participate and I think also about the numerous stories that we saw arise in the last election cycle that spoke specifically about laws that were designed to target and disenfranchise Native folks. And as a Black person I’m thinking pariticularly about how these narratives really paint a story and a picture about how different structures of oppression don’t just intersect, they depend upon one another and they feed each other and to see how structures of racism and ableism are being pitted against one another and used in order to target different folks and we see that in Georgia with the ways in which people were disenfranchised in low income predominately Black communities under the guise of the ADA and under the guise of polling locations being inaccessible.

VALLAS: And unpack that connection too because for anyone who’s not aware of this particularly twisted development within this space, you’re actually describing the ADA, the Americans with Disabilities Act being used as a tool for voter suppression. How is that coming to pass? How are we seeing that play out?

ALTRAIFI: Right so 60% of polling locations are still inaccessible but what tends to happen is it’s only selectively cared about when it can be used as a way to shut down a polling location that just happens to be in a community that’s predominantly Black or predominately people of color, other marginalized communities. And so this came to a head in Georgia in this past election cycle as we saw polling locations being closed in predominately Black and lower income communities and the reasoning, the justification that was provided was because that polling location was not ADA accessible. And so it was an attempt to try and instrumentalize disability and ableism and use it as a way to entrench white supremacy. And that’s not the first time that we’ve seen that. That is a very long standing tactic, pitting experiences of marginalization against each other, trying to divide people so that these system stay in place. And so we’re seeing this again and again and it’s not going to be the last time that this happens and s.e. you had mentioned that this is the sort of thing that we’re seeing crop up all over the country in a multitude of ways. And so it’s something we have to be vigilant about.

COKLEY: This is Cokley, it also acts as if there are not Black disabled people that are being disenfranchised in these communities as these things are going down. And I think it’s important to also note that the disability community in Georgia, specifically the Black disabled community in Georgia, largely led by folks a couple of the centers for independent living, props to Sarah Blahovec and Dara Baldwin who did a lot of work with NCIL and the National Disability Rights Network getting folks engaged on this. But the Black disabled community in the Atlanta area and in the areas effected were very vocal and the rest of the disability community was very thoughtful in sitting down and shutting up to let Black disabled leaders in those spaces drive the conversation and say this is not OK you will not be weaponizing the ADA and furthermore and this was something that came up in conversation in the last week, we’re also just coming off of the fight around 620.

VALLAS: Which is the legislation that would undermine the Americans with Disabilities Act itself.

COKLEY: The notion that they have been deemed, that non-disabled folks have been demonizing disabled people saying that we’re going around creating fraudulent lawsuits to attack communities of color.

VALLAS: And that’s one of the talking points from the industry lobbyist who recognize that sounds a little bit better than eh, we didn’t really want to be accessible can we find a way out.

COKLEY: And then on the flip side to have some of those same industries and some of those same powers that be go around and start shutting down polling places and say oh it’s because you’re not accessible with fraudulent lawsuits.

smith: And something else to know here is we knew those polling places were inaccessible because the same dang study comes out every two years, polling places rarely move. You have many opportunities to go huh, maybe instead of having this in the Lutheran church from 1872 we could have it in the brand new elementary school which has ramps and is fully accessible. So these communities made a choice to continue designating inaccedisble sites as polling places and then tried to leverage us to disenfranchise people.

ALTRAIFI: And this also happened not long after Atlanta was being investigated for having terribly inaccessible sidewalks. And as this was still being litigated and still moving through the fact that the state would then be like oh we now care about disability in this one particular context, we’ll pretend that there aren’t Black disabled folks here and we’re going use this as a way to shut down this polling location, I think really goes to show what’s really actually happening there.

COKLEY: During Stacey Abrams’ campaign!

VALLAS: There’s all kinds of physicalities happening that you cannot see that I’ll express brains exploding and I’m feeling it too. We’re going to have to leave it there, I say with great pain because of how much more there is to talk about with you guys but thank you so much for coming and spending a little bit of holiday time with me in the radio studio and with Off Kilter, you guys are some of my favorite humans. Been speaking with s.e. smith, deputy editor at TalkPoverty.org, come read plenty of s.e.’s stuff over on Off Kilter’s nerdy syllabus page where we will give you lots more where that all came from, Rebecca Cokley folks know as the director of the Disability Justice Initiative and Azza Altraifi is the research associate on the Disability Justice Initiative and general thrower of fire emojis as you now know. I can’t wait to have you guys back the next time we do a DJI takeover of Off Kilter and happy holidays everyone!

COKLEY: Happy Holidays!

smith: God bless us, every one!

[LAUGHTER]

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.