Janine Jackson interviewed the Disability Economic Justice Collaborative’s Kim Knackstedt about disability policy for the March 10, 2023, episode of CounterSpin. This is a lightly edited transcript.
Janine Jackson: Human rights advocates everywhere marked the death, March 5, of groundbreaking disability justice activist, spokesperson and policymaker Judy Heumann.
Obituaries rightfully noted meaningful advances Heumann played a role in, like the Americans With Disabilities Act.
Washington Post (3/6/23)
It rang a bit odd though to read in the Washington Post that Heumann, born in 1947, “came of age at a time when disabled people had restricted access to libraries, schools and public transportation, with limited opportunities for education or employment.”
Perhaps the outpouring of attention for Heumann’s life and work could encourage journalists to explore present-day restrictions, limitations, crises, confronted by people with disabilities—one in four adults in the country—along with what responses, including policy responses, are called for.
Kim Knackstedt is senior fellow at the Century Foundation and director of the Disability Economic Justice Collaborative. She joins us now by phone from Washington, DC. Welcome to CounterSpin, Kim Knackstedt.
Kim Knackstedt: Hi. I’m glad to be with everyone today.
JJ: Well, I’m not making fun of that piece. But I was just struck by that “cast your mind back, if you can, to a time when disabled people didn’t enjoy all the freedoms…”
I guess my thought, just to start us off, is that. But also, Judy Heumann was emphatically not of the “wait patiently and progress will inevitably come” school of thinking, was she?
KK: Oh, no, no, not at all. Judy was definitely one to fight for what she wanted, and she was fiery. One of the words she loved to use was “feisty.” And she really went after what she knew was wrong.
And during her services yesterday—I was very lucky to attend and be in community with so many people from around the country, and by video, around the world—we got to hear so many stories about her, and every story had a note about her fighting for the rights of disabled people, and against the injustices that so many of us face.
Time (9/19/22)
JJ: And still face. And this is of course what I’m complaining about here, the treatment of disabled people as an afterthought in policy, in media, which I know is what you engage.
And it’s weird, given not only that so many people in the country are living with disabilities of varying kinds, but also because it’s a community that anyone can join at any moment. And, indeed, I’ve heard Covid described as a “mass disabling event.”
And I wanted to ask you, what is Covid showing us about policy responsiveness, about movement responsiveness? What are some of the impacts when the disabled community grows, as it were, suddenly in this way?
KK: I appreciate you pointing out that anyone can become disabled at any time, because that is part of what I think the US economy is actually facing right now, with the growth of the disability community in a very abrupt way because of Covid.
And we do have the largest influx of the community that we’ve seen in many, many years, and that has really caused the workforce to try to make an adjustment. And that adjustment’s been slow, it’s been difficult, because we have so many people that now cannot do the job that they used to do because of long Covid. And that is extremely difficult, not only for the entire, again, US economy, but for that person.
We’ve had some great pieces, actually, through one of the projects at the Century Foundation, called the Voices of Disability Economic Justice project, with people talking about this, and what it means to become disabled because of long Covid, and not be able to do the things you used to be able to do so easily every day.
Our policies have not changed fast enough to be able to support everyone. That includes our healthcare policies. That includes, now, our education policies. And it includes, again, those workforce policies and accommodations that people need.
Washington Post (7/23/22)
JJ: There was a thoughtful piece from last June in the Washington Post that talked about what supports and education veteran advocates can offer to “long haulers,” dealing with not just new problems, but with, as you’re saying, a new identity. And it also talked about tensions within the disability community, which as with many marginalized communities often finds itself struggling over limited resources. And now there are millions more people involved.
And it’s an interesting situation. But I just wanted to lift up—there was one quote in this piece from a guy who says long Covid gives a chance to make some updates to health policy, in part because the condition is affecting, he said, “a different mix of people than what we’ve seen in the traditional disability population.”
Now, I’m not trying to stir up trouble here, but it sounds a little like “we’re getting a better class of disabled now, not that ragtag group you’re used to,” and there’s an implication, in other words, that now maybe there will be the power to change things. And I guess that arouses mixed feelings in me, is what I want to say.
KK: It does. And I think there’s a couple ways to unpack that. One, there’s a narrative out there that the disability community are kind of fakers and takers. That’s a narrative that we have to undo, because it’s an incorrect narrative, and it’s a narrative that really doesn’t actually help, it only harms the disability community, because, again, anyone can become disabled at any point in their life.
That quote that you mentioned, it really ignores the fact that there’s a false narrative that’s already circulated about the disability community.
But I think, on the other side, what the quote does acknowledge is that having a whole new influx of people to the community gives a renewed energy, and a renewed movement, to the policies that are needed.
When all of the sudden you have a bunch of other people that have entered any community, any movement, there’s different energy behind it. You know, all of a sudden, we have senators saying, “I need this, I am part of this community. I guess now we need a bill on it.”
That’s very different, and we don’t always see that. And so we do get some of that renewed energy, and that’s really important. But at the same time, we have to balance that with the fact that we have a false narrative that exists. And that just breeds into the stigma against disability that we really need to try to overcome.
JJ: If the comment is partly acknowledging that some of the Covid long haulers have wealth, then one can, very sadly, ask, for how long?
The nexus between disability and poverty is central, and of course that’s key to the Collaborative’s work. I’m not sure that it’s really understood how policy choices—not disability, but policy choices—put disabled people in struggle, and keep them there. Can you talk a little bit about that?
Kim Knackstedt: “Undoing that entangled web of policies that really focus on keeping people with disabilities in poverty is extraordinarily difficult.”
KK: Yes, the problem is I could talk about that for hours! Disability and poverty are so connected, and some say the whole structure and the whole system is broken. Well, unfortunately, the whole system is actually working exactly how it was designed.
It is keeping disabled people in poverty because that’s how the system was structured. And so it’s not that the system was broken. The system has to be completely corrected. And what I mean by that is that so many of our policies have been designed to keep disabled people out of work, to keep disabled people from actually building wealth, and to keep disabled people from even getting the care that they need to live independently.
Some of our healthcare policies really actually preference institutional care, not living in a community.
So undoing that entangled web of policies that really focus on keeping people with disabilities in poverty is extraordinarily difficult, and that’s something that we have to do. Even outside of wealth, I would say, social and political capital that people hold? Leveraging that as we start to make some work on all of this is going to be really important.
JJ: CounterSpin listeners will have heard us referenced the “Medicaid divorce,” in which people have to get divorced in order to keep their health care because if they’re married, or they can’t get married, because together, they make too much money. It’s cruel, and it’s often hidden, I think, to other folks.
KK: Yeah, absolutely. And there’s so many choices that I think so many people do have to make, and it’s just how you start to allocate funds to try to just live day to day.
I mean, I acknowledge that I have privilege, because I work at a great place that has health insurance. But I also am a high health cost user; I have infusions that without insurance would be $30,000 a month. Thank goodness for insurance. I also have to spend a lot of money towards that, because I could never qualify for Medicaid to help pay for that.
So you think about, even though I acknowledge the privilege that I have to be able to afford what I do, the whole system is stacked against you when you are a person with a disability and trying to get the care you need, from the cost of prescriptions, the cost of specialists, the cost of getting home, community-based living, the cost of a direct care worker, trying to access the workplace you need. And the list goes on.
JJ: And the Disability Economic Justice Collaborative is saying there are things we can do, there are policy changes that we can make, that can, as you’re saying, not tweak and not fiddle with and “perfect” the system that we have, but really fundamentally overhaul it.
Century Foundation (1/12/23)
KK: Absolutely. So much of what we do does tinker on the edges, and we’re saying we need to stop just tinkering. And so much of disability policy is siloed, and again, we’ve been caught in this web that I mentioned before for so long.
Instead, what we’re saying is, let’s bring a lens of disability to all economic policymaking: food security, transportation, housing.
What we are trying to do at the Disability Economic Justice Collaborative is really bring a disability lens to all economic policymaking. And that’s really the goal, whether, again, you’re doing all of these different policies, it’s trying to embed disability into every single piece that you are working on.
So we are saying, let’s center the values that disabled people need, and bring that into all of our domestic policy work.
So I’m going to give an example. We believe every disabled person needs to have access to reliable, affordable and accessible transportation. That’s something that’s fundamental. And so we want to see that, no matter what the bill is, what the proposal is, what the law is, regulation—I could go on, right?—that’s the goal we want to see throughout. And the same thing for healthcare, access to healthcare they need, access to food.
And so we’ve developed a framework, we call it the Disability Economic Justice Policy framework; we want to see that embedded into domestic policymaking to really move the needle on how we think about policymaking with a disability lens.
JJ: Because every issue is a disability issue. And that goes for media as well as for policy. Every story that impacts disabled people should include awareness of the impact, is my feeling.
It’s not bad to have occasional reports that focus solely on disability or the disabled community. But if you’re reporting rent hikes or food prices or criminal justice, well, disabled people are in that reality, so they should be in the story.
Do you have any thoughts, finally, about media coverage?
KK: Yeah, I think it is really important for media coverage to think more about disability. I think one of the things we see is—you’re exactly right, there will be a story about something related to disability and then you won’t see something else until it’s very disability-centric, and everything in between ignores that disability exists.
And we know that that’s just not how disability is in our lives. Disability is part of the natural human experience.
And so, very much so, I think disability just needs to be embedded more into the stories that we hear about, and part of the narrative throughout everyone’s life.
I also would encourage, in the media, that it’s not about disability being an “inspiration.” I think that’s where the lean tends to go when there is a disability-centric story. And it’s just, disability is part of the life that we all live, and here’s the story that happens to be about a disabled person, or a narrative that we’re talking about.
And so those are some of the pieces that I think would be great to think about more.
JJ: We’ve been speaking with Kim Knackstedt of the Century Foundation and the Disability Economic Justice Collaborative. You can find their work online at TCF.org. Kim Knackstedt, thank you so much for joining us this week on CounterSpin.
KK: Thanks for having me.
The post ‘The Whole System Is Stacked Against a Person With a Disability’ appeared first on FAIR.
This content originally appeared on FAIR and was authored by Janine Jackson.
Janine Jackson | Radio Free (2023-03-16T18:21:10+00:00) ‘The Whole System Is Stacked Against a Person With a Disability’ – CounterSpin interview with Kim Knackstedt on disability policy. Retrieved from https://www.radiofree.org/2023/03/16/the-whole-system-is-stacked-against-a-person-with-a-disability-counterspin-interview-with-kim-knackstedt-on-disability-policy/
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