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Somebody’s Watching Me

Off-Kilter Podcast
44 min readMar 28, 2019

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It’s another Disability Justice Initiative Takeover! Rebecca (Vallas) is joined by DJI’s Rebecca Cokley, Azza Altiraifi & Valerie Novack, plus special guest Matthew Cortland (aka Medicaid Matt), to discuss the growing surveillance state targeting people with disabilities. Subscribe to Off-Kilter on iTunes.

This week on Off-Kilter… it’s another Disability Justice Initiative Takeover. Rebecca (Vallas) is joined by three of her amazing colleagues from CAP’s disability program — Rebecca Cokley, Azza Altiraifi, and Valerie Novak, plus special guest Matthew Cortland (better known as “Medicaid Matt” where you probably follow him on Twitter @mattbc). They joined for a far-ranging conversation about the growing surveillance state targeting people with disabilities — from the Trump administration’s new proposal to spy on Social Security disability beneficiaries’ social media, to schools setting up registries of students with mental health disabilities, to Medicaid work reporting requirements, to ill-informed approaches to addressing opioid misuse, and much more.

This week’s guests:

  • Rebecca Cokley, director of CAP’s Disability Justice Initiative (@RebeccaCokley)
  • Azza Altiraifi, researcher with CAP’s Disability Justice Initiative (@Azza_Alt)
  • Valerie Novack, fellow with CAP’s Disability Justice Initiative (@MADtastically)
  • Matthew Cortland, chronically ill disability lawyer (@mattbc)

For more on this week’s topics:

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 get excited, it’s time for anoter Disability Justice Initiative Takeover of Off Kilter. So I am joined by several of my favorite people for this particular episode, an emphasis on several because we actually have an extra special guest with us, plussing up the traditional DJI crowd, so really, really thrilled to welcome back Rebecca Cokley, friend of the show, Cokes.

REBECCA COKLEY: Hey.

VALLAS: Also thrilled to welcome back Azza Altiraifi, Azza thank you for coming back on the show.

AZZA ALRIRAIFI: Always good to be here.

VALLAS: Valerie Novack making her debut appearance on Off Kilter as a newer member of the Disability Justice Initiative.

VALERIE NOVACK: And we are joined by extra special guest Matt Cortland, you probably know him on Twitter as Medicaid Matt, Matt thanks so much for coming and hanging out with us.

MATT CORTLAND: Thank you for having me, y’all are some of my very favorite people to hang out with.

VALLAS: So it’s a little bit of a full house here with a lot of folks who are not exact shy about the topics we’re going to get into so let’s get right into them. the first thing I wanted to talk about with you guys and then I know you guys have been doing a lot of talking about on social media and in other places. There’s a new policy that has been announced by the Social Security Administration within the Trump administration and it’s as I mentioned social media, ironically a policy that has a lot to do with social media and it has a lot to do with the social media of people with disabilities. Matt, tell us a little bit about this particular announcement and it’s a terrifying one.

CORTLAND: Yeah so buried in their budget request for the upcoming fiscal year, the Social Security administration dropped in this tiny little paragraph that says they want to explore using social media surveillance to decide whether or not claimants applying for Social Security Disability Benefits are actually disabled or if they’re faking. And we don’t know much more than that because it’s just this tiny little paragraph but it’s deeply, deeply, deeply troubling.

VALLAS: And we’re going to talk about why that is, I want to get super concrete with what this is because we referenced it as part of last week’s budget episode just very, very, briefly just to say it was one of the horrible things that was in there but you just used the word surveillance which in a lot of ways is really going to be the throughline of this week’s DJI takeover, pretty much everything we’re talking about falls into the category of surveillance of people with disabilities but when it comes to this particular policy what the administration is saying they want to do is quite literally to spy on Social Security Disability applicants and beneficiaries, also current beneficiaries it looks like. Folks are speculating to basically see what’s on their Facebook, what’s on their Twitter, what kind of pictures are the posting, all of this is supposed evidence that people aren’t quote, “actually disabled.” Matt you’re a person who uses social media quite a lot, you’re also a person who receives Social Security Disability benefits, are you faking?

CORTLAND: No, I am really, really, really, not faking having 15 years of a terrible course of Inflammatory Bowel Disease, I wish I was sometimes, it would make my life a lot easier. But contrary to what those running the current administration might think, we’re not actually all fakers, believe it or not. So I don’t really want to have to go through my life thinking about whether or not a picture I post of me lobbying a senator in the halls of congress will be used as proof that I’m not really disabled when really I’m engaging in core protected conduct. The stuff that we want American citizens to do, redress grievances, free speech, all of those great core constitutional protections that conservatives are supposed to be all about. This really does call into question whether or not those purported beliefs in free speech, in civic participation are actually legitimate or if they’re just window dressing.

VALLAS: I want to give a special birthday shoutout to Alice Wong who is the beloved robot overlord of the internet, of the disability community in many ways as she’s known by a lot of folks as Cokes often calls her. Cokley Alice Wong has in a lot of ways really cracked the nut on figuring out how to use social media as a tool to educate people, to educate the public but also as a tool to build community. And #CriptheVote which she’s been one of the people behind for quite some time now and which everybody in this radio studio right now participates in and finds community, that’s a big part of why social media is so important and also perhaps more important to many people with disabilities than able bodied folks. Have you talked to Alice about this particular policy?

COKLEY: No I haven’t spoken to the overlord of robots, the queen of the disability community, uniter of shade, caster of pods, cripper votes yet. But I was just literally visualizing Alice out and about in San Francisco drinking boba tea with a spy behind a potted place hopping out and taking photos of her. So Alice set up your wheelchair with some nitrous and some gasoline and whatever else you need to have magic buttons to hit because I really do feel like people like Alice who have such a tangible presence around the country for someone who doesn’t leave the Bay Area I think are going to be significantly under attack. I remember the story a few years ago where there was a person who had a back injury who was on SSDI who was seen on the Price is Right and spinning the wheel and that person was in fact faking it. But stories like that lead to every other accusation, it plants a seed with other types of disabilities who can’t work, who are dependent on SSDI for their livelihood and they said what if they catch a picture of you carrying laundry up the steps at your home. What if they catch you playing with your kids at the park? My dad played with me at the part and he was an SSDI recipient. This is inherently uncool, man.

VALLAS: That it is and Matt I feel like hearing you talk a little bit before from your own experience and this is why I want to go back to you, so much of this is especially terrifying for people with invisible disabilities because if you’re the person in the wheelchair, if you’re the person with some kind of a physical disability then you’re not the person that this kind of a policy is really targeting. The Social Security Administration doesn’t have any skepticism that you’re faking it because you can see with their eyes what they understand to be your disability and therefore your eligibility for their benefits. For say you’re someone like Matt and to look at Matt and to see Matt carry laundry up the stairs might make someone who is one of the skeptics go oh you’re not really disabled because they can’t see your inflammatory bowel disease.

CORTLAND: That’s exactly right, especially since the Social Security Administration itself tells us all that they have a fraud incidence rate that’s less than one percent. So according to SSA’s own figure fraud is exceptionally rare and that’s because when under the current rule set they’re deciding whether or not someone is disabled they’re doing an incredibly deep dive into that person’s medical history. It takes extensive records, extensive medical records to qualify in order to persuade the person at the Social Security Administration or the state counterpart if we want to get really wonky, Social Security is actually a partnership between federal employees and these state agencies called Disability Determination Services or DDS’s for short. And the folks at the DDS are looking at my MRI scans, they’re looking at CT scans, they’re looking at operative reports, they’re looking at medical records that if you were to print them out are about 1,000 pages.

If Social Security adopts this new proposal they’ll also be looking at something I post to twitter like a photograph of me outside. That doesn’t tell anyone anything about what my intestines are actually doing that day. So there’s already very little fraud according to Social Security in Social Security Disability programs and putting social media in the hands of frontline staff, which is really what they’re talking about doing, they’re talking about allowing the people at those Disability Determination Services who are looking at medical records to also just go onto Facebook all by themselves, go onto Twitter all by themselves without trained investigators, without anything formal like current practice has these investigations utilize. And it’s not at all clear to me how a picture of me walking outside invalidates the fact that my inflammatory biomarkers as I sit here are off the charts.

VALLAS: And you’re making such an important point about the rarity of actual fraud in this program and I want to add onto that another statistic which is to help people understand how hard it is to qualify and that is that the United States uses the strictest definition of disability for its Social Security Disability programs of any country in the entire developed world. To make our eligibility criteria any stricter, to make it any friggin harder to get these meager benefits that are themselves not even close to enough to live on and yet we would actually have to replicate Korea’s system, that is what we would have to do and maybe that’s where the Trump administration is looking for fresh ideas when we start to think about freedom being something that makes the United States of America a special place relative to some other countries, it does. It gets incredibly terrifying, it also gets terrifying when you think about the potential chilling effect that this type of policy could have for people who find such community in the internet and in social media and Valerie I know you participate from time to time in another one of these communities and that’s spoonie chat.

NOVACK: And I think Twitter is a special place where we can get out some of those grievances especially in the spoonie chat but I think about Facebook, we’re talking a lot about Facebook surveillance that’s the place where people are living their best life, right? The pictures you’re going to post, the stories you’re going to tell on Facebook are not oh I couldn’t get out of bed today because I was so sick, I’ve been here for 8 hours. Or I cried this morning in the shower because I couldn’t stand up long enough to wash my body, that’s not what you’re posting on Facebook, you’re posting that day where you were doing really well and hey, I went for a walk today or I took my kids to the park. And so those are, and we know this all the way around, not just people with disability but the stuff that we’re posting on Facebook are the highlight moments, they’re the times we’re doing really well or we’re feeling really proud or we’re really excited about something. so looking at that as a measure of how somebody is feeling from day to day is just going to be highly inaccurate because you’re not going to be sharing the parts, unless they want people to start publicly sharing all those parts as well, which will really just go to what feel additional stigma and separate people.

I think people with disabilities already feel when they’re outside of those communities like spoonie chat where they can’t talk about this stuff with other people because it makes people uncomfortable or people don’t want to hear people complain or something like that. This would force people to potentially separate themselves even more from both their communities that they found online but also friends and family that aren’t part of the disability community who they’ve decided don’t want to hear about these parts of our lives.

VALLAS: And folks might be wondering what spoonie chat is, it’s another place, a community really on Twitter that brings folks with chronic illness together, you want to explain spoon theory?

NOVACK: Yeah and I think that’s actually a really important part of this conversation because the idea behind spoon theory, if everybody has a certain number of spoons that you call them, and then people with chronic illness start off with less than able bodied people but have to do the same amount of things or certain things take more spoons than they would for an able bodied person. And so when we start to look at that and discuss some of these things that might be looked at as something that would make somebody not disabled, doing laundry, right? That might have taken all of their spoons for that day, so yeah you have that one picture of a person carrying their laundry to a laundry room but after that they sat on the couch and cried for two hours. Versus somebody else who did that and they packed their kid’s lunch and they ran errands and they did a million other things after they did that which is why they can go to work and work an eight hour day when somebody who is getting SSDI can’t and that’s the thing you’re not going to get from a picture on social media.

VALLAS: Now Azza I mentioned that surveillance is in a lot of ways going to be the through line for this entire episode and this is something you spend a lot of time thinking about, writing about, researching, Valerie you as well, really all of you but you guys in particular especially in the last several months. So help us connect some of what we’ve been talking about here which is in the context of Social Security which is a very specific proposal that we’re talking about. There’s a lot of ways that particularly folks with mental illness and serious mental illness are under threat of tremendous surveillance of pretty much everything that they do.

ALTIRAIFI: Absolutely and the particular proposal that we’ve been talking about really, while egregious isn’t at all surprising. Because what it’s doing is it’s leveraging an already expansive and deeply entrenched surveillance apparatus that has targeted people with SMI or serious mental illness for a very long time and other parts of the disability community too. And as with many of the topics that we cover here we also know that people who exist at the nexis of both having a serious mental illness and being a part of color, being LGBTQIA or experiencing some other form of marginalization they’re going to be at increased and compounded risk of this interference and surveillance into their lives. And I think as we talk about the ways in which social media monitoring is being proposed it’s important to recognize social media monitoring happens all the time. It’s a norm, which is why it’s very easy to make this proposal without having to outline in real detail what will it look like to implement this. Because implementation isn’t that hard when it’s something that’s been done.

So for one example Facebook had rolled out a few years ago that it would be employing certain algorithmic mechanisms for identifying people who may present as suicidal and that would immediately trigger a series of responses that could result in that person having 911 called in order, that is already a form of surveillance and the underlying presumption in all of those systems is one, a presumption of gross incompetence or of faking that is frequently applied to members of the disability community and further still it is a presumption that it is the state’s role to monitor, surveill and therefore control the activities of people in a way that extends far beyond just the scope of what the programs are allegedly focused on and I think particularly in the context of serious mental illness what we’re seeing isn’t limited to social media. It really pervades every aspect of our lives.

In the wake of the shooting in Parkland we saw the state of Florida move incredibly quickly to pass a statewide measure that would require any parent or any caregiver who is enrolling their child in a Florida school to notify that school if that child has had any kind of contact or received any sort of mental health services and supports. In so doing we have established a statewide registry of students with mental illness in Florida right after they all underwent this massive trauma and are most at need of accessing those very services and supports. And there are so many contours to this system. It is an incredibly complex legal web that ensnares so many people that at its core what it represents is a system that has decided by default people with SMI are dangerous, that if we are to address issues of violence we can only do so through surveilling them and criminalizing them.

VALLAS: And there’s perhaps nowhere where this shows up more often than within the gun violence prevention conversation. Where we watch conservatives and the NRA who want nothing to do with any kind of reasonable gun violence prevention measures, right, we know how out of step they are with what the American people want, with even what NRA members want when you actually survey them, ironically. But so the play ends up being to scapegoat people with mental health disabilities and to say they’re the scary thing, they’re the danger and this is the classic line, guns don’t kill people, people with guns kill people and god knows how much Wayne LaPierre has said over the years that we could quote and that maybe I’m going to choose not to because let’s not give more voice to him than he already has. He’s got plenty. But all that to say the result then ends up being these policies that as you’re describing it are incredibly invasive and that are basically tracking people with disabilities as though they’re the danger and that also have the double whammy effect of not making our communities actually safer and those policies can even be counterproductive by impeading the kinds of policies that we know would actually take guns out of the hands of people who really are dangerous. And Valerie you actually just wrote a piece with Azza about this very subject and making that point about registries and surveillance in the context of gun violence prevention.

NOVACK: Yeah like you’ve mentioned it gives a false lulling and sense of security. People see something like this and think OK my kids are going to be safe when they go to school. And it allows people to be a little less vigilant except nothing has actually been done to create a safer place and it’s a compounding of trauma, especially when we looked into this Florida situation. We were very cognizant of realizing that many of the kids that would have gotten mental health services specifically because of what happened and what they experienced in Parkland would then go to register for school the next year and be put on a list that says you are potentially a danger and will do this.

And how compounding of a traumatic experience that would be to have something horrible happen to you and then have somebody turn around and say we need to make sure that we’re watching you. And the same thing happens with registries all around. We create these registries of people with disabilities for interactions with police, for emergency response all to give this idea of well that’s going to make you safe. And over and over and over again in every one of these instances we see that doesn’t happen.

VALLAS: Cokley, you’re snapping, you’ve got more to say on that I know.

COKLEY: And I think one of the things that’s been so exciting about this work has been the comradery and the solidarity that we’ve found with a lot of gun violence prevention organizations. And I want to actually throw some love and shout out our friends at the Coalition to Stop Gun Violence whose executive director, our friend Josh Horowitz this week came out very publicly even after the passage of one of these red flag laws about the need to change the language and Josh has been out front working with the disability community for the last several years talking about how, referring to these lists of individuals that should not able to purchase a weapon as red flag laws specifically stigmatizes individuals with mental health disabilities and mischaracterizes the way that these bills should be operated. I think it goes to show the amount of hunger for this collaboration specifically between folks in the disability community and the gun violence prevention space to think about how do we center these conversations on behavior versus diagnoses. And I think what we’re seeing in Florida with kids being told that when you go back to school this year you’re now going to be on a list because your parents got divorced and you saw a therapist is extremely problematic and we know that it’s going to disproportionately kids of color, kids in low-income school districts, etc. but for the first time in a lot of these conversations I’m actually very heartened to see people outside of the disability and chronic illness and mental illness space saying this wrong, this is going way too far, this is impacting communities that haven’t done anything wrong and we need to course correct.

VALLAS: Matt.

CORTLAND: I shouldn’t be able to buy an AR-15 because no one should be able to buy an AR-15.

COKLEY: They’re bigger than me.

CORTLAND: Not because I have a mental health diagnosis and if we’re going to start looking at characteristics I probably shouldn’t be able to buy an AR-15 because I’m a white heterosexual cisgender male. And if I look at the people who are committing these atrocious acts of violence on a scale that is difficult for me to wrap my mind around, they’re people who look like me. So history of intimate partner violence and domestic violence are the sort of things that we really need to be looking at despite what the NRA vociferously argues those are the sorts of indicators, not a child who sought therapy because of some stuff at home.

VALLAS: And Cokley I feel like, just to bring you back in for a second, I feel like a point that you often make is the approach and the thought process, the paradigm that gets brought to so many of these debates is so often, as Valerie was saying oh I’ve got to think about the safety of my child and that’s something everyone can relate to in some way whether or not they have children but on the other hand what about when your child is the person with a disability or the person with a mental health diagnosis and therefore the person being targeted by these very kinds of policies. That’s not something that most people really think about oh, I’ve got to look at this as a mom kind of perspective.

COKLEY: I remember actually one of the first conversations that I had in a room of gun violence prevention activists and I said to them so ostensibly could a child who lives in a house with parents who own a gun, could a child then get a gun violence protection order against their parents if that child has a disability and feels inherently unsafe in their household? And I was thinking about disability day of mourning and the over 1,000 disabled people who have been killed by their parents or the individuals who, and I hate to say the word who are supposed to care for them because if you care for someone you’re not going to kill them but that’s the terminology and so I said to these folks from all these organizations so if I was a autistic kid and I was afraid of abuse in my household could I get a GVRO on my parents because I was afraid of them killing me? And to watch the look transfer, I think the only person who actually held my gaze was Josh Horowitz who was like that’s a problem, heck yes you should be able to. And for the rest of gun violence prevention advocates they hadn’t thought about that. And I think for so many young people with disabilities who are so used to being stigmatized as the problem, we haven’t taken a step back to think about these rules and thought about how could we reframe them as solutions, how could we change the power dynamic in some really powerful ways by changing the conversation from one of diagnosis to one of behavior?

VALLAS: That was Rebecca Cokley speaking, also speaking with Azza Altaraifi, Valerie Novack, Matt Cortland, don’t go away, more Off Kilter after we take a very short break that you know I always hate to take.

[MUSIC]

Welcome back to Off Kilter we’ve got another Disability Justice Iniative, DJI takeover in progress, so I’ve got a radio studio full of some of my favorite folks, I’ve got Valerie, Azza, Rebecca Cokley and Matt, Medicaid Matt, Matt Cortland. Matt I feel like people just know you as Medicaid Matt and it’s unfair of me not to introduce you that way. It came up in a team meeting the other day and someone was like Matt, oh Medicaid Matt!

CORTLAND: Shout out to Ben Winkler who is much better at branding than I am who was with MoveOn and is now –

VALLAS: Running for stuff in Wisconsin isn’t he?

CORTLAND: Party chair I believe.

VALLAS: Yeah, that’s right.

CORTLAND: Democratic Party chair.

COKLEY: Hi Ben, we miss you!

VALLAS: We do.

CORTLAND: We totally do.

VALLAS: Except we don’t have to miss him much because of social media, which allows us to stay in touch with him and have him be part of our community.

COKLEY: But it doesn’t let me stand next to him at a rally so I don’t get lost.

VALLAS: Well that is true, he is definitely the one to look for if you are lost at the same rally.

COKLEY: Ben is my reasonable accommodation, he knows that.

[LAUGHTER]

VALLAS: But Matt we’ve been talking about surveillance in a whole slew of ways that it is being brought to bear to target people with disabilities, particularly people with invisible disabilities, people with mental health disabilities and we’ve been talking in this last little bit about gun violence prevention and how people with mental health disabilities get so thoroughly scapegoated like lather, rinse, repeat, every single time there’s another mass shooting you know what we can expect and what that means in terms of the policies that flow from it. But we also know and I really want to go back to you for a second Azza because of how much work you’ve done on what I’m about to bring up which is this is also just so thoroughly something that infuses the policy contexts that lead to ultimately the criminal justice system, people talk about the school to prison pipeline that is ultimately in a lot of cases where this goes. I was joking with Cokley actually earlier this morning, she loves to tell the story of how she hired you and the very first conversation you guys ever had which was about that.

ALTIAIFI: Yeah it was and I think that one of the problem in the way that we often talk about this is we think that it stops with surveillance, that these people are being monitored, that their actions are being monitored and that that doesn’t then lead to anything else. And I think that that assumption is how people are able to justify it to themselves. That if we’re just watching what they do so we can somehow predict or prevent something bad happening before it ever happens maybe it’s OK and I want to push back against that because the very reason why this is so entangled with the carceral system, with the criminal justice system, is precisely because the ways in which these laws have been written have eroded entirely the autonomy of people with mental health disabilities, our agency has been so diminished by the legal structures and the ways in which they have been shaped through court cases and through legislation and through that process what we’ve really seen is that people with mental health disabilities are being criminalized because they could at some point potentially commit crime.

And that entire process is so fundamentally unjust at its core. And I would argue too that not only is it so fundamentally rotten it also rests on this premise that in order for us to prevent crime no one can actually be free and specifically marginalized people can’t be free.

VALLAS: It’s not everybody, it’s certain people.

ALIARIFI: Right exactly, and I would situate this in the Trump administration’s both declared intensions and actual actions to further dismantle what remains of our autonomy and our civil rights protections as a community of people with mental health disabilities. They’ve already indicated that they want to complete gut HIPA or the Health Insurance Portability Act that protects our really sensitive health care information, they want to gut FERPA, which protects sensitive student information, Family Educations Rights and Privacy Act, they want to use whatever leavers they can to complete and totally erode our humanity and whatever mechanisms do exist for us to advocate for ourselves effectively.

And in so doing not only are we being funneled into the criminal justice system at rates that are truly extraordinary, but we’re also seeing the development of a mental health system that exists parallel to the carceral system. And when people can’t be pushed in through the traditional mechanisms of law enforcement interaction we push them into an entirely different but somehow eerily similar carceral system and that’s medical incarceration. And that should terrify everybody, and that is a system that is deeply entrenched and goes so far beyond Facebook or Twitter, it absolutely colors every single experience for me as someone with a serious mental illness, as someone who has been subject to forced institutionalization, and as someone who recognizes that as a person who is also Black, who is also Muslim, who is also Afro-Arab I am going to bear the burden of that surveillance apparatus in deeply compounded ways.

VALLAS: I’m just taking a breath and I’m looking over and Cokley is fawning and has a hand up next to her face listening just so much to all of that. Which is such I think I good segue into the next of piece of this where surveillance comes in. and this is going to be a little bit of a different approach, this isn’t quite the traditional spying that we’ve been talking about or registries but that’s the way that the national conversation has been proceeding around opioids and I’m getting a lot of head nodding as I’m bringing this one up right now. When you think about even just the word opioid, it’s almost like everyone reflexively with muscle memory at this point now knows to say right after that “epidemic”, opioid epidemic, if you read the news and you don’t live under a rock in this country you have watched the story be told that we have a massive opioid epidemic and that people are dying by the scores because of misuse of opioids, now that’s as much as a part of the story as is true what you don’t hear is how much more complicated the story is than that, what the pathways are to where people end up with opioid misuse as part of their life. And you certainly don’t hear the other side of the story which is what about if you’re a person who lives with chronic pain and what are opioids to you? We actually talked a while back on this show with someone who is a friend of a lot of ours, colleague of a lot of ours, Kate Nicholson who is a really powerful speaker, a former civil rights attorney at the Department of Justice who herself has lived experience with chronic pain and talks a lot about as she describes the opioid epidemic, I want to give voice to that and acknowledge that, but Valerie this is back in the news as the opioid conversation heats back up on capitol hill and still with that really problematic one sided frame that takes us to all the wrong policy conclusions.

NOVACK: Absolutely and I think that Azza really set it up really well ending on that medical incarceration note because it is a little bit different but now we have legislation that again is being introduced to get an eye into the doctor patient relationship when we’re talking about opioids and when we talk about people who are living with chronic pain and are going to paid management doctors, this is not this willy nilly thing that the news tries to play it out to be where people are just showing up and leaving with these enormous prescriptions for opioids. A lot of people who are dealing with pain management and chronic illness have spent years and years and years getting diagnoses, finding doctors that will treat them and are reliant on opioids to be able to get up and go to work and to play with their kids and to be productive and we have this kind of war that’s out there and doesn’t really make a whole lot of sense where people are saying well these people are addicts, we have people you want to spy on people to see if they’re faking for their SSDI but then want to take away the things that would make them productive in society and punish them for having a solution to the disability that they have through opioids. And it’s not to say that there aren’t people that are misusing opioids but even in the way that we address treatment for them is what, to cut them off and funnel them into illegal drug use, which where we’re seeing a lot of these deaths and overdoses?

VALLAS: Azza go ahead.

ALTIRAIFI: I was only going to add that even as we figure out, even as we describe the contours of this I really want to also emphasize that it seems like a particularly bizarre take to not only diminish our agency, the people who need those medications in order to be able to fully participate and do what we need to do to lead healthy lives, that it completely strips the agency and the ability of doctors the times in which doctors are actually there and want to be supportive and help us and do the work that they should be doing and their hands are being tied too. And so even when they’re there to do the right thing they cannot. It completely strips the agency of every single party to this that would need it in order for us to actually address this issue effectively.

VALLAS: Matt, this is something that we’ve actually all been talking about a lot in the course of the past several days because there have been some proposals that have been coming back up that have taken various approaches to addressing opioid misuse that have been shall we say sledgehammer and not quite scalpel and that are not quite tailored to the way that the problem actually manifests. Help us understand what do we know from the research, what do we know from medicine, what do we know about what is driving opioid misuse and how does diagnosing the problem correctly and thoughtfully and in a nuanced way take us to policy conclusions that are maybe different from what we’re hearing a lot of on capitol hill.

CORTLAND: That is an excellent question. So first I have to acknowledge that I am a public health geek, my graduate training in addition to law school was also in public health. And so this is something I cared a great bit about not only as a person who is abel to sit here in this studio with you all today because of a script for an opioid that my GI doc writes for that lets me be a functional human being out in the world to some extent, mitigates the impact of IBD on my life. And so I’m looking right now at a tab of codeine that is allowing me to be here and to talk to you all today for which I’m very grateful. I also think it’s really important to acknowledge that substance use disorder is an epidemic in this country. I cringe at the term “opioid epidemic”, opioids are a drug, they are not a disease. In public health we usually talk about epidemics in terms of disease. Opioids are not the vector here, they are not the thing that is independently causing these deaths. Opioid use disorder is and we know because for example the National Academy of medicine tells us that opioid use disorder is a brain disease and it is a disability and people with opioid use disorder deserve the best available science based treatment that we have to offer and they’re not getting it. Something like between ten to fifteen percent of people with opioid use disorder are able to access treatment with medication which we know cuts mortality in half, in half! We have medications that we are not using that would save tens of thousands of lives ever year and we’re not using them in part because of regulatory barriers that are roadblocks that congress has erected between doctors and treating patients.

So for example there’s this drug called buprenorphine, we all just call it “bupe” for short because buprenorphine is a mouthful and I might not even be pronouncing that correctly right now. But doctors are actually limited, the number of patients a physician can prescribe bupe to is limited by federal regulation. I have trouble imagining, I don’t know of another drug where that’s the case because fundamentally we are treating addiction as a moral failing, we’re treating it as a character flaw instead of the brain disease that we know it is and that failure of us all is killing people. And so instead of imposing arbitrary legislative fiat, limitations on prescriptions that aren’t grounded in evidence, that are addressing, they’re answering the wrong problem. We need to base our solutions to this crisis on the best available scientific data. And so arbitrary limits like Senator Portman’s 3 day limit on initial opioid prescriptions for acute pain aren’t based in any sort of research that I’m aware of or any of the experts I’ve talked to. They are instead really just these knee jerk policy reactions, don’t just stand there, legislate something.

VALLAS: And I’m going to play strawman here for a second or devil’s advocate or whatever the person on the other side is that I don’t actually agree with but I’ll pretend I do for a second. And I’ll say but Matt it sounds like a really smart common sense idea to just limit how much doctors are able to give out because what if your kids get a sports injury and ends up needing to get put on some kind of pain killer for a short term injury and then boom they get hooked, how do we prevent that from happening? But to stop the flow of these prescription opioids through doctors who are just handing them out like candy.

CORTLAND: That’s a great question. If you had a time machine and you could travel back to 1999 I would urge you to take a bullhorn through the halls of congress and urge them to require physicians to get independent what’s called continuing medical education or CME credits from basically anyone but the pharmaceutical industry on the safe careful and responsible prescribing of opioids.

COKLEY: AOC did you hear that? Just throwing it out there.

CORTLAND: Because they were the players who were talking to doctors and they were giving them bad information and so it is true that the first wave of what has come to be known as the opioid epidemic was driven to a large extent by inappropriate prescribing practices. According to CDC’s own data we are now in the third wave of this opioid epidemic.

VALLAS: Explain that because this is really, really important.

CORTLAND: There’s something call the iron law of prohibition. When you take away a substance that people are addicted to they will if at all possible substitute in another substance. So the first wave was prescription pills, that was being driven by unscrupulous providers and pharmaceutical companies in this unholy alliance that resulted in the pill mills we’ve all read about in Florida strip malls. But that’s not happening anymore. And the second wave was the return of heroin and heroin driving opioid overdose deaths and now we’re in what the CDC is calling this third wave which is being driven by deaths caused by illicitly manufactured fentanyl and I really want to stress illicitly. This is not the fentanyl coming from your local operation room or emergency department. Physicians know how to use fentanyl safe and effectively and this one is personal for me because I can’t have something called delaudid so when I am in the ER I need fentanyl. When a state like Pennsylvania just decides to ban fentanyl outright that means I can’t go to Pennsylvania anymore. Illicitly manufactured fentanyl, we’ve seen deaths from that source skyrocket over the last several years and so trying to dictate how doctors take care of individual patients in front of them isn’t even going to address the actually root cause of the current wave of opioid epidemic deaths.

VALLAS: And I want to also just push you on one other pieced of this that comes from research that comes from evidence and that’s that we don’t have to guess at what happens when you put something like that Portman three day limit on opioid prescriptions into effect. We’ve actually seen that happen in a whole slew of states, literally more than two dozen, I believe it’s 23, 24 states?

COKLEY: 33.

VALLAS: 33, someone’s got the number, thank you Cokley, fact check on aisle three, 33 states have actually done this and we know what happens and that it massively backfires and it results in actually suicides and horrible, horrible health outcomes and other kinds of parades of terribles. Cokley, what happens when we do this?

COKLEY: The VA did a study when they tried to implement a similar policy a few years ago and what they saw was that suicides increased by a minimum of 13%, people killed themselves because they were in such intense pain. And I think there is that conversation and what I was glad to hear Matt talk about the continuing medical education piece really is also such a lack of knowledge about chronic pain and what chronic pain actually is. And such a lack of trusting people, especially people with disabilities, especially people of color with disabilities and long term chronic health issues when they talk about their pain. It came up this last year obviously around Serena Williams and her blood clot issue where she talked about feeling like there was something fundamentally not righ with her body and having to push the doctors to listen. And we hear time and time again stories and I could name dozens of activists and advocates in the disability rights and the chronic illness space. Anita Cameron’s talked about it repeatedly, Anita who is a friend of the show from ADAPT and other folks who have talked about going in to see a doctor and immediately being suspected of doctor shopping to pill pop. And doctors never taking the time to sit and listen to them about their history of pain and I have to actually give a shoutout right now, Matt your Romney, that’s what I call binders now, your Romney on opioids is just giving me life, it is spectacular.

VALLAS: What you need to see to understand all of that is that Matt is holding a large binder that is not full of women it is full of material on opioids that is what he is looking at currently so Matt, back to your Romney.

CORTLAND: In my defense, I have never met the distinguished senator, even when he was the governor of Massachusetts my home state.

VALLAS: Nor have you ever had a shortage of women on speed dial that you knew were deep experts on a range of issues but hey.

CORTLAND: Also true, very, very true, I was just going to say that it’s not just individual lived experience that we know from the literature that pain assessment and treatment is racist. I’m going to read one sentence from a study it says, “A study of nearly 1 million children diagnosed with appendicitis revealed that relative to white patients, Black patients were less likely to receive any pain medication for moderate pain and were less likely to receive opioids, the appropriate treatment for severe pain. These are kids with appendicitis and that’s just one example. I could spend the rest of the show, I won’t, but I could spend the rest of the show going through the literature. And so we also know that these bills that stigmatize opioids and people with chronic pain have the effect of exacerbating racial inequalities and the structural and systemic racism that is endemic in medicine.

VALLAS: And Valerie, this is something that you speak about regularly and that you yourself actually have some experience with.

NOVACK: There was a study in Michigan not very long ago, a survey I’ll say of medical students who still believed that Black people felt less pain than their white counterparts, so this is something that is very, even new doctors that are coming out now this isn’t just the 60 year old doctor who’s been at it for a while and still holds some racist beliefs. These are our youngest, brightest coming out that still have these. I struggle with chronic pain, I don’t like saying I struggle with it but sometimes it is a struggle. The first time I was in the ER for unexplainable just bring you to your knees pain was in 2007, the first time I had a doctor who sat me down and worked out something to manage my pain was in 2015. And that was years of doctors and ERs and people constantly telling me that I was doctor shopping, because I was overweight, that it was because this or that that had nothing to do with the fact that some days I could not get out of bed because my body just felt like it was going to fall apart.

And you begin to get desperate and start to look for anything that can help this. And we talk about not an understanding of chronic pain which I think is true but the same lack of understanding on substance abuse and it causes people, you can’t just say well you’re addicted I’m just going to cut you off, withdrawal is a horrible, horrible experience and it’s what causes people to get desperate enough to look for illicitly manufactured fentanyl and having these overdoses. So we’re talking about people dying that way and we’re talking about people dying from things like suicide or living absolutely miserably from chronic pain and we have to start to weigh these out. So ok we put an arbitrary limit on opioids to stop deaths by creating more pain and suffering? That’s not a solution, it’s just shifting the problem.

VALLAS: And your story I feel like it gives so much life to what otherwise might sound incredibly theoretical which is well, why don’t we just put in exemptions for say chronic pain into these kinds of bills? Wouldn’t that just fix everything? Short answer; no, long answer; hell no and that’s because that’s not how things work, right?

NOVACK: I went nearly ten years without any diagnosis for my pain and so every time I would go to the doctor, which was regularly, it was a new case, it was something brand new, it an acute situation. Despite the fact that you could look at my very, very thick medical record and see that this was definitely not a one time thing without having that continued treatment, tha’ts the way it showed up. I would not be covered by many if any of these bills that are trying to address this issue until I had dealt with it for almost ten years.

VALLAS: I’ll put myself right there with you, I’m on year sixteen of trying to get a diagnosis I’m still not there, although I’m getting some help from some friends in trying to find better doctors, I’m looking around the room at some of those people who I will not name in this moment but also would be in the same situation of do I count as someone with chronic pain? Do I get carved out, probably not because I don’t have a diagnosis.

NOVACK: And I think that what is interesting about my story is that I was actually treated with opioids by several doctors because I don’t have a doctor who could treat my diagnosis and once I got that was no longer treated with opioids. So how much of this is because people don’t have somebody they can sit down and have a real conversation and say hey, these are my symptoms, this is what I’m feeling, let’s try out some medicines, let’s try out some treatment plans to address this when you’re just having ER doctors or one doctor’s going to pass you to another they’re trying to solve what they consider an acute problem with a ten day opioid prescription. My lack of treatment actually fed that more than me being able to sit down with a pain management doctor.

VALLAS: Now Matt one of my very favorite zombie lies out there and by that I mean the ones I hate the absolute most.

CORTLAND: Just won’t die.

VALLAS: Just won’t go away is that Medicaid is to blame for opioid misuse or the opioid crisis or epidemic or whatever language usually gets used by people who would want to even make that kind of a connection. Matt, how would you respond if you were in a room with someone who probably should be a little concerned for what they’re about to have thrown at them in response to saying something like that if they are unlucky enough to find themselves in a room with you when they say it.

CORTLAND: Oh come on, I don’t throw the binders, they’re too dangerous but I would say –

VALLAS: You draw the line somewhere that’s good to know.

CORTLAND: Absolutely.

VALLAS: Don’t throw the Romney.

COKLEY: No Romney’s were injured in the production of this episode.

[LAUGHTER]

CORTLAND: Thank you Cokes. I would say that we know that opioid use disorder is a disease that disproportionately effects people who have difficultly accessing medical care. We know that Medicaid is a program that effectively provides medical care, access to medical care to that population in that Medicaid is the way that right now we are most effectively treating folks with opioid use disorder and substance use disorder generally. Medicaid is what’s paying for what gets called medication assisted treatment in air quotes and it shouldn’t be called that because nothing else is called assisted in that scare quotes sort of way.

We know that this medication, medications like methadone or buprenorphine cut mortality in half, we know that you need to go to a doctor in order to get a prescription for them and last time I checked doctors cost a lot of money in this country, health care appointments [are] expensive. And we know that Medicaid is often the payer paying for both the appointment to see the doctor to get the prescription and the drug when you go to the pharmacy to fill your lawfully written prescription for the medication that is going to help keep you alive. And so this notion that Medicaid is somehow to blame for opioid use disorder boggles my mind. I can’t even, I’m a lawyer, one of the things we’re trained to do is analogize and I’m having trouble in this moment reaching for an appropriately absurd analogy, that’s how bad this is.

VALLAS: How about is it as bad as blaming people with mental health disabilities for mass shootings?

CORTLAND: It feels very similar

VALLAS: Because it feels pretty similar to me.

CORTLAND: I am right there with you.

VALLAS: So I don’t want to spend too long on a zombie myth because let’s not give it any more airtime than it deserves except just to raise it up and explain why it’s absolute hot garbage. What I would love to close on is actually a note of really good news because just before we all came into the studio, just before we starting rolling tape a federal judge just declared that Trump’s horrible, evil, cruel, and also deeply stupid policy to take health insurance away from people who don’t have jobs and can’t get enough hours at their jobs and that is, make no mistake, what his so called Medicaid work requirements policy is, that’s the last time I’m going to say that phrase because it’s not really what it is. A federal judge has struck the policy down, said that it cannot move forward, has blocked it in two states, Kentucky and Arkansas, Arkansas being the first state where this has actually been playing out to the tune of 18,000 plus people now already having lost their Medicaid for the crime of being unemployed or not being able to navigate the red tape to prove that they’re working x number of hours per week to the state’s satisfaction. Really fantastic news coming out of the courts for a change that it’s really important for us to celebrate but also bringing it up in the context of this conversation, not just so that we can all leave not having talked only about dark and horrible and bleak topics but also because I would like to put on the table and posit that work reporting requirements like the ones that Trump wants to see not just in Medicaid but also jacked way the heck up in the Supplemental Nutrition Assistance Program, SNAP formerly known as food stamps, he’s also called for putting them into housing programs, so basically the punishment for unemployment would be hunger, homelessness and not having any health care, that is the Trump agenda on poverty in this country, make no mistake. I wanted to raise this because my theory of the case is that that kind of policy isn’t just garbage, it isn’t just divide and conquer at its heart, it’s also another form of surveillance that is most notably going to hurt people with disabilities and with chronic illnesses. Azza, do you think that’s fair?

ALTIRAIFI: I think that’s absolutely fair and I think at its core what all of these policies propose and implemented are doing it isn’t taking our healthcare system and making it entirely puntative and doing so is essentially telling those of us with serious mental illness, those of us with substance use disorders, those of us who are multiply marginalized trying to navigate an already incredibly complex and inaccessible system that we have to not only perform but negotiate for our humanity when that should just be presupposed.

VALLAS: And Cokley you looked like you wanted to get in on this.

COKLEY: I can’t, I think Azza just summed up exactly what I was going to say.

VALLAS: And I want to be clear, it’s not just people with disabilities, and people with chronic illnesses who will be targeted and who will be surveilled in the form of work reporting requirements, it’s marginalized community across the board and low-income folks by and large because of who these programs help. But it is yet another modern day manifestation of what back in the day, decades ago was the welfare worker going into the house and looking to see if there was a man’s shoes under the bed.

COKLEY: That’s exactly what I was thinking about, the man under the bed rules.

VALLAS: Yep, we’re not making that up. For anyone who could use a quick history lesson, that is a thing that actually happened not that long ago in this country to make sure that all those bad single mommies that we have to blame for the existence of poverty in America in the 21st century because that’s what we got to do, that they don’t have any secret men in the house who are actually secretly providing for them in ways that would cause us not to feel the need to provide them assistance so that they and their children do not starve

COKLEY: Here I just thought it was a reason for me to stop dating short men.

[LAUGHTER]

VALLAS: So I just want to leave each of you guys the opportunity for a lightening round wrap-up on either reflecting on the good news of this announcement from a DC district judge and actually before I do that, I want to kick it back over to Matt to just ask the question people who are listening are probably wondering, which is where do things go from here? Does that mean poof no more work reporting requirements in Medicaid anywhere? There were a lot of state that were chomping at the bit, red states, to pick this up? Or do we actually need to keep watching for additional shoes to drop since we’re on shoes. Matt what should we be watching for?

CORTLAND: I don’t think they’re done, I don’t think the Trump administration is done, this is going to go back to HHS for them to actually to their job and respond to the comments in a substantive way that thousands of people submitted and I just want to take a quick second to say thank you to everyone who took the time to submit a comment objecting to these work in the paid economy or die requirements is how I refer to them. Because your comments were the very large part of the judge’s reasoning in rejecting these waivers that allowed these state to impose these requirements. The judge repeatedly cited to the comment record that you all submitted to HHS so thank you so much to everyone who took the time to do that.

VALLAS: Commenting matters, commenting matters.

CORTLAND: It really does, I know you are a huge fan of getting people to submit comments, we share that in common.

VALLAS: How did you know Matt? Is it because maybe we know each other social media and are part of the same social media community?

CORTLAND: I think that’s actually how I met you.

VALLAS: I think that’s exactly how we met.

CORTLAND: HHS gets another bite at this apple if they are foolish enough to take it they can try again.

VALLAS: And that would be the third time, right?

CORTLAND: Yes it would.

VALLAS: Because it’s already been struck down once and they came back.

COKLEY: Once, twice, —

VALLAS: Is this the moment where you sing Cokes or is that later?

COKLEY: We already passe dit.

VALLAS: No we didn’t. [LAUGHTER] You think I forgot? I got plans for how we close out this episode but this would be the third time if they came back.

CORTLAND: It would and unfortunately there is no strike out rule here, at a certain point hopefully these people are not going to be in office anymore, I pray but everyday this is really important, everyday that we hold them off is another day that chronically ill patients, that disabled patients, that working moms and dads and children in these states have access to medical care and that is certainly worth fighting for.

VALLAS: I’m going to look back over at Cokley and give her another opportunity to talk and she’s going to tell me she doesn’t want to because she wants to leave it there and I sort of feel like I don’t know how I say anything after that either. It’s such an important note to end on given how many other fights we’re currently enmeshed in, where commenting is the thing that you can do, it feels when this administration is coming after us by fiat and not using legislation and circumventing congress, which is Trump’s classic playbook, that is what he ahs learned from his inability to get things done except for his tax law through legislation he learned not to change his agenda, not to listen to the American people, not to think about what his policies are and maybe they’re really unpopular and that’s why they’re not getting through. His lesson he took away of course was to go around congress and just do things himself and a lot of those things are actually unlawful, they’re outside of the authority that he has and that the White House has. And this Medicaid victory, at least victory for now and I agree 100% Matt because every day that we push them off is a win and with very human consequences but it’s not just Medicaid where we’re actually fighting this fight so of course people know where I’m about to go with this, you guys know in the studio you guys all listening know where I’m going to go because I’m a broken record and I’m going to be a broken record for one more week because we have six more days to submit public comments, which Matt just gave such an eloquent case for why they matter, six more days until April 2nd when the comment deadline comes up for telling Trump not to take food assistance away from somewhere between three quarters of a million and maybe more like 1.2 million people who are unemployed, are struggling to find work, can’t get enough hours at their jobs, cobbling together lots of jobs to try to make it work. Those are the people who would lose food assistance under this rule Trump is trying to circumvent congress to enact by fiat and comments, comments, are our thing. So just another reminder, handsoffSNAP.org, #handsoffSNAP is your place to go and vent, go and share your feelings, go and tell Trump how you feel and Azza and Valerie I’m going to look to you guys to any final words that you want to offer.

NOVACK: I think Matt summed it up perfectly, I don’t know that there’s anything else you can say after that.

VALLAS: Except maybe #handsoffSNAP? I’ve been speaking with Valerie Novack, Azza Altiraifi, Rebecca Cokley and Medicaid Matt Cortland for another DJI takeover of Off Kilter, you can follow all of them on Twitter, come check out the nerdy syllabus page for lots of what was in Matt’s binder and more on all the topics we were just talking about and Cokes I feel like there was a song that you were going to sing that maybe ties all of what we’ve been talking about all together.

[COKELY SINGING ROCKWELL’s “SOMEBODY’S WATCHING ME”]

And with that we’ll let Will take us out with the real version.

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.

Disability
Opioids
Social Security
Gun Violence
Trump

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Off-Kilter Podcast
Off-Kilter Podcast

Written by Off-Kilter Podcast

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Off-Kilter is the podcast about poverty and inequality—and everything they intersect with. **Show archive 2017-May ‘21** Current episodes: tcf.org/off-kilter.

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