On this week's show Justin and Bekah reflect on the challenges being faced by the disability community in our current times in the ways in which these circumstances allow us to deepen our understanding of disability pride.
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Good morning, friends, and welcome to another episode of Palsies with Palsies. I am your palsy, Justin Hancock.
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And I am your palsy, Becca Marin Anderson! And he is back! We're both back!
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She's back!
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What a concept!
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It was, like, about 3 years since we've done a show together. I know it's only been, like.
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I'm two and a half months, or two months, but…. It's so good to be back with you, Becca.
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It is, and it's good to be back with our listeners, because I was not able to… to….
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Find the time to do recordings while you were away, so I have missed being….
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Here at all, and being here with you in particular.
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Well, thank you, and again, thanks to Dylan for filling in on the last episode and helping us, uh….
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Yes, thank you, Dylan.
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Make a… I'm just gonna lean in and say make a triumphant return.
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Um…. But, um, yes….
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Yes, absolutely.
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So, we are fully back in the saddle, the Pauli's crew is back again, and for a while.
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Um, hopefully not going anywhere, so…. Good to be back.
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Yep. Planning… planning to be back on… on the schedule. Uh, you know, we're… we're here, it's a Wednesday morning, I'm mostly awake, but I've got a cat on my lap, so, you know, we've got….
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The important elements of a Powsies with Palsy's episode, uh, which are at least one of us being a little mentally fried.
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Um, and a cat.
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Yeah, that'd be, uh, that's the, uh…. Haldies with policies?
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Huh.
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Fan experience, I think, would be, uh…. Knowing that those things are, uh, present and accounted for.
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Exactly, it's our… it's our winning formula.
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He's a good guy. On that note, God knows we need a winning formula.
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Because, uh, woof.
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Why do we? Yeah, so today, um, we've been doing this Q&A segment for, you know, the past several months, and we're.
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We usually do that at the end, but we're actually gonna move that to the front of the episode today, because the question, I think, could most succinctly be put.
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So those Medicaid cuts in the big, beautiful bill passed. Now what?
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And we figured that that felt like an important thing to address off the bat before we get into anything else.
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Yes, and just to give our listeners some idea of… it's….
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July is Disability Pride Month. Which we're very excited about.
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Mm-hmm.
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Than we would normally do. There's a… episode at the front of….
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July, but because of some various circumstances and coming back from….
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Sabbaticals and such, it's mid-July, which is fine. Um…. But we don't really want the Medicaid discussion to….
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Swamp the entire episode? Uh, so we're gonna lead off with….
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Yeah.
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Things you should know if you are experiencing Medicaid and are interacting with Medicaid, and things that you should know if you're.
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Uh, an ally and a friend of some more, a family member of somebody on naked, so….
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Um…. I will….
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Start, I think I don't have the…. The date directly in front of me? Because I think if I ask….
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4 or 5 members of Congress, they would know. Uh….
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Yeah.
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But, first thing to know about these cuts…. Is they….
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Yes.
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They are sizable, which we've spoken about before. Um, but they're not real… well, they… they aren't officially.
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Taking effect, I believe, until…. After the midterms. I'm not 100% sure on that fact. We were discussing this before the show.
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I'm… I'm more than 90% certain they're not gonna take effect until after the midterms.
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I believe that is true. I'm trying to find the, uh….
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Uh….
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The exact date now, but….
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So, um…. In the interim, if you are on Medicaid, the number one thing, and probably the.
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The simplest advice I could give you. Is, if you're in the middle of your renewal period, and summer is the renewal season for those of us on Medicaid.
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I literally…. I completed my… and got the notice that my renewal went through on the day the cuts were passed, which was….
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Wild. Yeah.
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Just and out-of-body type experience. Uh…. But if you're in renewal season.
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Continue…. To do your paperwork.
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Mm-hmm.
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Uh, do not! Give the Medicine, uh, system any chance to….
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Think you're stalling, or do not, like, lose hope, because, you know, they could have gone through.
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Continue as you normally would. Uh, and I would even say….
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Mm-hmm.
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If you usually take your renewal up to the last day or two, which we always do, because we live busy lives, and that's just what happens, but if you normally take your renewal up to the last day or two.
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Mm-hmm.
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And you have an opportunity to get it in more efficiently this year.
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Do it, because you want to be on top of your paperwork.
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And you want to be…. Um, really in the know, and it….
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Yeah.
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If you struggle to do your own renewal and your own paperwork.
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Find friends, but friends at your church, how to…. Uh, people that family members that you know that could assist you, and I would also say….
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Um…. You know, for us in Texas.
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It's 2-1-1 is the Medicaid helpline. I… they're lovely people there, but I don't like talking to them unless I have to.
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Sure.
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This year, I would advise you…. Even if you can give an inkling of a question, go ahead and call. Involve the system.
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And involve people that can help you. Sooner rather than later this year.
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Yeah, and your state may have…. Uh, like, look into what your state, uh.
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Medicaid programs and assistance are, you know, I know in Massachusetts, uh, you can call MassHealth, uh, which is our Medicaid program.
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Uh, for assistance, um, most hospitals also have MassHealth advocates, so if you go in to your local hospital and ask to speak with someone about MassHealth, they can walk you through the application or the renewal paperwork, like.
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There's… there is assistance out there, but it's… it's gonna vary from state to state, so that's….
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Yes.
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Annoying. Um, so I have looked it up, the… so the work requirements will go into effect January 1st, 2027.
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Um, so yes, after the midterms, um, midterm elections. And so we're not going to cover right now all of what that will mean, uh, for a couple reasons, both because we did a previous episode on this, you can find our episode about Medicaid and SNAP.
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Uh, changes, um, earlier in the feed from probably several months ago now. Um….
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And while some of the details of the final legislation are different, overall, everything that we talked about in that episode is still true of what's going into effect.
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And, uh, basically the summary of that is this legislation is going to require people who are on Medicaid.
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To work, go to school, or volunteer a certain number of hours each month.
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Or to be disabled and unable to work, a caregiver, uh, to a child, or to another family member.
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There are all these exceptions to the work requirements. The real problem that's going to come in here is.
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Everybody's gonna have to do a bunch of paperwork. Either you're gonna have to prove that you are working, going to school, or volunteering, or you're going to have to prove that you are.
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Disabled or a caregiver, or whatever gives you the exemption from those. And that's gonna be really rough, and it's going to be….
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Really hard to keep up with. Um, and when we get closer to that time, when we have more information about.
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What exactly that's going to look like. We will do another episode then and give you some more actionable advice on what to do about that.
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But, uh, just… just know that that is something that's coming up, and….
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You likely don't need to be worried that you will be.
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Kicked off of Medicaid immediately. If you don't meet those particular hours, there's just so many circumstances.
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Under which you can still keep your Medicaid. What you need to be worried about is how much paperwork you're going to be needing to do, so go continue to be connected to those state organizations and nonprofits and other groups.
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Mm-hmm.
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That are going to help you with that paperwork, because even if you don't need it for your Medicaid right now, you're probably going to need it in about a year and a half.
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Yes, it's like we're doing, uh…. If there's… if we… I live in Texas, and….
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Grew up here, we're doing two-a-days for football, two-a-day workouts. We're not gonna play the game for a while, but we're training so that when the game comes along, we are ready and we know what to do.
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Do some practice paperwork. It'll suck.
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Um…. Yeah, and even as we say it, we're aware….
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Because we… we do it. Um, boy, that sounds abysmal. I don't want to do that.
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Yup! Yup! I mean, I think we were literally just talking, you and I, the other day, Justin, about how you and I have paperwork trauma from.
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Like, needing… needing to be very, very clear on what the rules are of any contract or paperwork that we're… that we're completing, and being very anxious if we're not.
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The other thing I will, uh…. Say about this, and I'm gonna get… get, like, aggressively partisan for a while.
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Um…. Let's make them eat this.
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Mm-hmm. Yes.
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Um, uh. Stay on your particularly….
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Good to know your representatives in the House. Um, if you're in a purple or red state.
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Mm-hmm.
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Uh, because the house margin for error is so close. And I've been following and a part of and adjacent to politics, and particularly Republican Party politics.
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Most of my life, I guarantee you. The rank and file.
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Uh, particularly House member. Is terrified of this bill.
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Um, because…. One of the chambers I can….
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Yeah.
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I would be utterly flabbergasted if at least one of the chambers did not flip.
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In 26. If not both. But to make that happen.
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We've got to make them eat this bill. Um, for breakfast, and lunch, and dinner.
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So, get to know your congresspeople, and…. Continue to stay.
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And… yeah.
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Stay on them. I'm sorry, bad, what were you gonna say?
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Yeah, no, I mean, so to… to be very clear, the reason that this doesn't take effect until 2027 is specifically to put this after.
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The… the next midterm elections. And to basically try to blame the effects of this bill.
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On the next Congress. Don't… don't be fooled by that.
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You… you may not… if you looked at this bill and went, this seems like a bad idea.
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Yeah.
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And then, in the next year, you're like, well, nothing bad really happened. That's intentional. That is, this is.
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Yeah.
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Still the work of our current Congress, and especially our Republican leaders.
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And if you are concerned about the effects of this bill on you or your loved ones or people in your community.
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Then you need to be putting pressure on. The people currently in Congress.
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Even though you will not be seeing the effects of this bill until new elected officials are.
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Are in Congress.
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Yeah. And…. If we flip it now, and then we'll move on to the….
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Mm-hmm.
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Pride discussion, we promise. If we flip it in 26, there's a chance that the Congress that will come in. They can't do anything about this being law. It is law now.
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Mm-hmm.
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Uh, but if we flip in 20 cents, there's a chance that they can do what they can do to mitigate the effects of this bill.
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Whenever they have an opportunity. But in order for us to be able to do that, we've got to understand that.
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Like Rebecca said. That 2027 deadline is very, very, like, transparently intentional.
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Yep.
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Uh, because they, they, they know the pain that's at the end of the road, they know why it's painful, and they don't want to deal with it, so we have to.
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Uh, we have to keep it present in their memories.
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Mm-hmm. Exactly.
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Anyway…. It's a beautiful soapbox, yes!
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So that's our Q&A! And yeah, so to our… our topic for… for today, uh.
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These… these are very related, although it may take a minute to….
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To get to that connection. Uh, July is Disability Pride Month, and we want to talk about that.
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Hooray!
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So, I guess maybe a good place to start would be, uh, Justin, what's your understanding of what.
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Disability Pride Month is? Like, what is, you know, what is the month? What is this observance? Um, and maybe also a bit of what… what is disability pride? What do we… what do we mean when we say that phrase?
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Well, it's kind of, uh…. Interesting. I came to.
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Disability Pride Month. On a similar time scale that I came to Pride Month?
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Um, uh, LGBTQIA plus Pride Month? Meaning that, um….
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Mm-hmm.
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Where I grew up, and how I grew up. We didn't really, uh….
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Acknowledge Pride Month, and I'm not… I'm not gonna get into the, like.
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Finer details of that or not, but, um…. So, it was really an adulthood when I began to study the, uh, disability civil rights movement.
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And all that happened around, uh, the 60s, 70s, and 80s.
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Then I tried that to the passage of the ADA, and then I… I'm ashamed to say that.
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Uh, like, a year or two…. Uh, into the book process, I noticed that July was Disability Pride Month.
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And… and it really makes sense to me. So, for me.
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Disability Pride Month is so tied to the…. Generals civil rights movement in the passage of the ADA has to be….
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Mm-hmm. Mm-hmm.
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Um, inextricable, inex… yeah, inextricable, I believe that's the word. So that's what it means in a very literal sense. I'll get into what it means, like, more….
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Metaphorically means a minute. But yeah, I came to it late.
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Uh, as per usual with me. But, uh….
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Mm-hmm. As per usual for a lot of disabled people, I think, because that's also true of me. I didn't know about Disability Pride Month until.
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Gosh, I… I don't think it was that many years ago that I learned that this is a thing. Maybe 5 years ago, when we were celebrating the.
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30th anniversary of the ADA.
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Yeah, that was on… that's on the…. I think I heard of it while I was writing the book, but about….
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5 to 7 years ago. Uh, we had just come out of….
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At that time, I was in Oak Lawn UMC, a church for which LGBTQ Pride Month is….
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It's pivotal. So we had just come out of that celebration.
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And then somebody else… somebody…. In my disabled networks, and happy Pride Month, and I was like, wait, we just did that? What do you mean?
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And then they…. Subsequently educated me, I was like.
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That's cool. I don't know, I'm on board. Yeah, so it's been a….
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I'm a late bloomer, but the zeal of a convert, I guess I would say.
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Yeah, absolutely. I feel the same way, and like…. I… so I think, like.
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The placement of the month being July is very much about.
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The passage of the Americans with Disabilities Act. I've also… I also really always have liked the placement of.
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Disability Pride Month right next to LGBTQ Pride Month, like, that… that has always felt very right to me.
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Um, because Mike…. Maybe it's just, you know, my awareness of these things, but I think….
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Uh, celebrating LGBTQ Pride Month. Started before.
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Yeah, I'm almost certain that's true.
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Uh, celebrations of Disability Pride Month. Um…. Yeah, because, I mean, Stonewall certainly predates the ADA by a good bit. Um….
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Yeah.
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So, I…. So I… so I like that in the sense that, like.
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I think that the… the…. Concepts of queer pride and disability pride are very much related.
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Both in the sense that there's… there's a similar…. Uh… pride in our identity and, you know, defiance and protest.
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To these movements that we'll talk about in a bit. Um, but I also really like it because there's so much intersectionality between.
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The queer and disabled communities. I mean, that's so much of what this podcast is about, right? Is saying, like, we can have.
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Yeah.
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Queer and disabled people in the same rooms, and being the same people frequently, and….
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And these conversations are just deeply interrelated.
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And don't have to, like… we don't have to, like, cancel each other out, or have, as we've referred to in the past.
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Exactly. Exactly. Like, we can… we can each have a Pride Month, it's fine.
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The Suffering Olympics, you know?
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Yeah, exactly. So, Becca, um….
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What does it mean to you…. Like, we both, uh, talked about more of our practical discovery.
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How is it, or how? How does it continue to manifest to you on more of a, like.
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Abstract, or more of an emotional level.
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Yeah, I mean, I think in order to talk about that, I want to talk a bit about what Disability Pride as a concept means to me.
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Um, because I think there are a few different senses in which we can use that term.
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Um, I think one sense is the meaning on the face of it, right? Being proud to be disabled.
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And… that's a very complicated, uh. Topic, because for… for some of us, you know.
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It… there are times when it can feel very easy to be… to feel proud to be disabled, that, you know, our… our embodiments are, uh, elements of diversity and, like, we can look around and, you know, think about things through the social model, and say, like, if the world were.
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Fully accessible, like, my disability would not…. Impact my life nearly as much as it does, and it could just be, like.
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A different way of experiencing the world, that… that…. Enriches my experience and enriches the collective experience.
00:25:51.000 --> 00:25:58.000
But the fact of the matter is, there's also a lot of times when being disabled really sucks, even….
00:25:58.000 --> 00:25:59.000
Mm-hmm.
00:25:59.000 --> 00:26:08.000
Absent ableism and inaccessibility. Like, there are times when. I just want to be able to see the pretty flowers.
00:26:08.000 --> 00:26:09.000
Yeah, yeah.
00:26:09.000 --> 00:26:14.000
You know? And, like…. I… getting them image described is nice, but….
00:26:14.000 --> 00:26:17.000
I just… it would be nice to just see him. And….
00:26:17.000 --> 00:26:18.000
Yeah.
00:26:18.000 --> 00:26:24.000
People who experience chronic pain. Generally are not enjoying being in chronic pain.
00:26:24.000 --> 00:26:34.000
People who experience chronic illnesses of different kinds, and brain fog, and medical complications, like.
00:26:34.000 --> 00:26:39.000
There are just all kinds of things about the embodied experience of disability that.
00:26:39.000 --> 00:26:45.000
We may or may not be super proud of, and may or may not be….
00:26:45.000 --> 00:26:52.000
You know, always 100%. Willing to say, like, I love every single second of this.
00:26:52.000 --> 00:26:54.000
Mm-hmm.
00:26:54.000 --> 00:27:03.000
And so I think…. There's… it's… it feels important to me to claim disability pride in that sense, because I think.
00:27:03.000 --> 00:27:10.000
Society expects that we are never happy to be disabled? That there… that there is no time in which.
00:27:10.000 --> 00:27:18.000
We are content with our embodiment. But I also think the other sense of disability pride that I feel very strongly about.
00:27:18.000 --> 00:27:29.000
Is, like I was… I was mentioning before. Disability Pride as a sense of defiance, a sense of….
00:27:29.000 --> 00:27:36.000
Whether I'm…. Super jazzed about my embodied experience at every single moment.
00:27:36.000 --> 00:27:39.000
I still want to be here, and I still am here.
00:27:39.000 --> 00:27:50.000
And I'm not going to let anyone ignore me. I'm… I'm going to make a stink about everything that's wrong in society, and….
00:27:50.000 --> 00:27:55.000
And assert my right to… to live a full and happy life.
00:27:55.000 --> 00:27:56.000
Asian, yeah.
00:27:56.000 --> 00:28:10.000
And… that is… that is so connected with the… the ethos behind the Americans with Disabilities Act and the disability civil rights movement, is that's exactly what the disabled civil rights activists were doing.
00:28:10.000 --> 00:28:17.000
And it's also deeply connected with, uh, queer pride and that movement, and, you know, that.
00:28:17.000 --> 00:28:24.000
That movement is about, you know, being queer is fine and good, but it's also about protest, and about….
00:28:24.000 --> 00:28:25.000
Yeah.
00:28:25.000 --> 00:28:35.000
You know, folks at Stonewall saying, like, we're not gonna put up with police brutality anymore. And so I think those intertwined senses of.
00:28:35.000 --> 00:28:41.000
My… my body is good and worthy. And also, whether I'm….
00:28:41.000 --> 00:28:47.000
Happy about my embodiment or not. I am still here, and I deserve to occupy space.
00:28:47.000 --> 00:28:53.000
Yeah, I, um…. I have a similar, uh….
00:28:53.000 --> 00:28:58.000
Feel about. Being disabled, and I….
00:28:58.000 --> 00:29:01.000
I'm very proud of who I am, what I am, and….
00:29:01.000 --> 00:29:07.000
My embodiment. That doesn't mean I enjoy it all the time, or….
00:29:07.000 --> 00:29:08.000
Mm-hmm.
00:29:08.000 --> 00:29:15.000
Um, and that doesn't mean even while enjoying it, um…. Like, last night, uh….
00:29:15.000 --> 00:29:22.000
About 3 hours before it rained. It's been the best day I've had in weeks. Uh….
00:29:22.000 --> 00:29:23.000
My antidepressant's starting to take hold, my blood pressure felt good.
00:29:23.000 --> 00:29:28.000
Hmm…. Yay!
00:29:28.000 --> 00:29:34.000
Sold, steady and good, but about 3 hours before it rained, my elbows started hurting. I was like, what?
00:29:34.000 --> 00:29:35.000
Mmm….
00:29:35.000 --> 00:29:42.000
Well, and it was my arthritis, and so even when it's good, it can still be twingy and weird, and….
00:29:42.000 --> 00:29:43.000
Uh, challenging, and…. I think, um….
00:29:43.000 --> 00:29:51.000
Yeah.
00:29:51.000 --> 00:30:01.000
For me, the most…. Bizarre experience lately was watching a Cubs game, and they were doing a, uh….
00:30:01.000 --> 00:30:13.000
Fundraiser for Project Main Street, which works to battle ALS. And ALS is my kryptonite. Like, it's….
00:30:13.000 --> 00:30:19.000
It's an absolutely brutal…. Disease. Uh….
00:30:19.000 --> 00:30:22.000
I can't deny that. But even around that, the….
00:30:22.000 --> 00:30:25.000
Yeah.
00:30:25.000 --> 00:30:32.000
We want to eliminate ALS so no one has to…. To deal with this….
00:30:32.000 --> 00:30:37.000
Rural Bazito, which is true. But even the language….
00:30:37.000 --> 00:30:42.000
Used around that, coming from able-bodied friends and allies. Makes me so deeply in control, because….
00:30:42.000 --> 00:30:47.000
Yeah.
00:30:47.000 --> 00:30:55.000
It doesn't fit comfortably. In my disability pride.
00:30:55.000 --> 00:30:56.000
Mm-hmm.
00:30:56.000 --> 00:31:02.000
Set up, because it is so…. Like, brutally….
00:31:02.000 --> 00:31:04.000
Destructive? But yeah, the elimination of….
00:31:04.000 --> 00:31:08.000
Yeah….
00:31:08.000 --> 00:31:16.000
People's experience. It's just something to be eliminated. Makes me profoundly uncomfortable.
00:31:16.000 --> 00:31:21.000
Uh… so…. All that to say.
00:31:21.000 --> 00:31:27.000
Visibility pride, for me, isn't raw, raw, raw, raw, it's more of….
00:31:27.000 --> 00:31:34.000
Making the world. Turn their eyes towards us and say.
00:31:34.000 --> 00:31:39.000
We may not like it all the time, but this is the embodiment we have.
00:31:39.000 --> 00:31:40.000
Mm-hmm. Yeah.
00:31:40.000 --> 00:31:47.000
So, we're gonna find as much joy as possible. And we're gonna have the authentic experience.
00:31:47.000 --> 00:31:50.000
We've been granted.
00:31:50.000 --> 00:31:59.000
Yeah, no, absolutely. And I so share your…. Discomfort and, you know, struggle with those kinds of….
00:31:59.000 --> 00:32:05.000
You know, eliminate ALS campaigns and, you know, and there are a few other diseases that.
00:32:05.000 --> 00:32:08.000
That fall into a similar category, I think, where it's like.
00:32:08.000 --> 00:32:11.000
Yeah, I can… I can look at that and understand why, like.
00:32:11.000 --> 00:32:21.000
Know people who have this really wish they didn't, and, you know, like, it's… it's a terrible disease. And also.
00:32:21.000 --> 00:32:30.000
I just don't trust the non-disabled world. To know the difference between….
00:32:30.000 --> 00:32:35.000
A condition that…. Really is just….
00:32:35.000 --> 00:32:42.000
You know, very… causes a lot, a lot of suffering, and, you know.
00:32:42.000 --> 00:32:49.000
Is… is not… is something that most, if not all, of the people who have it would have preferred not to.
00:32:49.000 --> 00:32:52.000
And conditions where people are like, no, I'm already okay. And also the difference between.
00:32:52.000 --> 00:32:58.000
Yeah, yeah.
00:32:58.000 --> 00:33:07.000
Eliminating or changing our conditions, our experience of disability, versus eliminating us.
00:33:07.000 --> 00:33:08.000
Yeah.
00:33:08.000 --> 00:33:14.000
Like, that's… that's just not…. A difference that I feel….
00:33:14.000 --> 00:33:24.000
Society is really clear on. And, like, you know, that's… there's a lot to get into here around eugenics and selective abortion and some….
00:33:24.000 --> 00:33:33.000
Some really, really, uh, painful and complex topics, but, like. It's… it's why, like.
00:33:33.000 --> 00:33:40.000
I think, like, disability pride is so important to be able to say, like.
00:33:40.000 --> 00:33:45.000
We can't talk about what it…. What it looks like to….
00:33:45.000 --> 00:33:50.000
Eliminate any given disability. Until society.
00:33:50.000 --> 00:34:00.000
Can really fully, truly acknowledge. That all disabled people are human, and all of our experiences are important and valid, and we all.
00:34:00.000 --> 00:34:02.000
Deserve to live full lives. You gotta… you gotta be doing that before I can trust anyone.
00:34:02.000 --> 00:34:06.000
Yeah.
00:34:06.000 --> 00:34:10.000
To talk about what it means to eliminate a particular disability.
00:34:10.000 --> 00:34:14.000
Yeah, exactly. Um….
00:34:14.000 --> 00:34:25.000
And I… I've never experienced ALS in particular, I wouldn't quobble with anybody that wants to be a part of.
00:34:25.000 --> 00:34:26.000
Mm-hmm. Totally.
00:34:26.000 --> 00:34:34.000
Organizations like that, who has, um…. But, like you said, I… then the ability of the outside world to narrate.
00:34:34.000 --> 00:34:43.000
Narrate anything of authentic value to the disability experiences, uh…. Questionable at best, and uh… completely broken at its most fundamental.
00:34:43.000 --> 00:34:49.000
Yep.
00:34:49.000 --> 00:34:57.000
Yeah, exactly. But so I think, you know, just to kind of draw the through lines.
00:34:57.000 --> 00:35:09.000
I… I think that, you know, that's one reason why. Disability Pride feels… feels so important, is… is that, you know, taking up space and… and….
00:35:09.000 --> 00:35:15.000
And trying to…. To get society to be able to see the fullness of us.
00:35:15.000 --> 00:35:23.000
It's also very much about things like the Medicaid cuts that we were just talking about.
00:35:23.000 --> 00:35:31.000
Things are happening policy-wise all the time. That threaten our… our lives.
00:35:31.000 --> 00:35:32.000
Yeah.
00:35:32.000 --> 00:35:40.000
And, you know, and, like, that's…. That's the same origins of Stonewall and LGBTQ pride, right? Is that, like.
00:35:40.000 --> 00:35:59.000
It's… it's not…. It didn't start as just a celebration of rainbows are great, and isn't it wonderful that we're all gay? It started as, we are not… we are being harassed and arrested and assaulted, and we can't live our lives safely.
00:35:59.000 --> 00:36:00.000
Yeah.
00:36:00.000 --> 00:36:07.000
And we're not gonna take it anymore. And that's very much how I feel about.
00:36:07.000 --> 00:36:13.000
Disability Pride. Like, we're… we are…. Are… are….
00:36:13.000 --> 00:36:20.000
Benefits that we rely upon to live are healthcare, our access to personal care attendance.
00:36:20.000 --> 00:36:29.000
Our access to many different programs that. Uh, that allow for independent living for a variety of people.
00:36:29.000 --> 00:36:32.000
Have been under attack in various ways for years. Are under particular attack right now.
00:36:32.000 --> 00:36:36.000
Yeah.
00:36:36.000 --> 00:36:42.000
And so it's particularly important to say, for me to say, like.
00:36:42.000 --> 00:36:51.000
I'm here, I'm disabled, and you can't…. You can't forget about me. You… you can… you can pass whatever laws you want.
00:36:51.000 --> 00:36:56.000
And they'll cause huge amounts of pain and suffering, and probably death.
00:36:56.000 --> 00:37:01.000
And you still won't get rid of all of us. We're still going to be here.
00:37:01.000 --> 00:37:05.000
Causing problems and making it known that this is not okay.
00:37:05.000 --> 00:37:12.000
And that's… that's what I would say is, um…. And again, um….
00:37:12.000 --> 00:37:24.000
Knowing that the protest, like, marching in the streets. Is tough for, um, disabled people, particularly in today and age cold, uh.
00:37:24.000 --> 00:37:26.000
In the culture of today. And the age of violence that we seem to be living in, um….
00:37:26.000 --> 00:37:31.000
Mm-hmm. Yeah.
00:37:31.000 --> 00:37:37.000
My wife doesn't let me…. Go to, like, urban….
00:37:37.000 --> 00:37:42.000
Large protests, because…. It's hard for me to protect myself.
00:37:42.000 --> 00:37:43.000
Yeah.
00:37:43.000 --> 00:37:53.000
Which is understandable. Although, I would still encourage us disabled folks, make as much noise as you can.
00:37:53.000 --> 00:37:54.000
Um, call with…. Yeah. Um, I've seen….
00:37:54.000 --> 00:38:01.000
Yeah. There are lots of ways to protest.
00:38:01.000 --> 00:38:11.000
Um, I have seen, um…. Youtube videos and Facebook Reels of people.
00:38:11.000 --> 00:38:14.000
Throwing their own funeral. Um….
00:38:14.000 --> 00:38:15.000
Mmm….
00:38:15.000 --> 00:38:21.000
Because of the Medicaid cut. And although that might be seen by.
00:38:21.000 --> 00:38:26.000
A large part of the embodied world is dramatic, and whoa, that is stark.
00:38:26.000 --> 00:38:32.000
I think it really…. It… it did… it was not subtle. It was, like, right there.
00:38:32.000 --> 00:38:34.000
Yeah. Mm-hmm.
00:38:34.000 --> 00:38:44.000
Um, and I think it's very important for us to, in whatever medium, to be right there right now, because….
00:38:44.000 --> 00:38:49.000
Um, like you said, I'm like, I've said for a long time, uh….
00:38:49.000 --> 00:38:57.000
Going back…. As long as we've known each other, Becca, I've said some version of, on my….
00:38:57.000 --> 00:39:02.000
Most honest days, I have to admit that the large percentage of the world.
00:39:02.000 --> 00:39:08.000
We're not, like…. Functionally does not want me to exist.
00:39:08.000 --> 00:39:09.000
Yeah.
00:39:09.000 --> 00:39:16.000
Uh… and then there's one main difference, is now they're saying the quiet part out loud.
00:39:16.000 --> 00:39:17.000
Yep. Yep.
00:39:17.000 --> 00:39:28.000
Um…. But just to put, uh, more nuance on it, those protest moments.
00:39:28.000 --> 00:39:33.000
Can be even small conversations with intimate friends and family. I'll never forget.
00:39:33.000 --> 00:39:34.000
Yes.
00:39:34.000 --> 00:39:43.000
And Hamom, I love you! Uh, you're about to be on the show. Hugs!
00:39:43.000 --> 00:39:52.000
My mom and I were talking about…. The cuts this weekend, because they happen on the 4th of July, and we were….
00:39:52.000 --> 00:40:09.000
Catching up, and um…. She knew that my renewal had gone through, or was going through, and she said, well, I trust you guys, and I know that you know.
00:40:09.000 --> 00:40:10.000
Mm-hmm.
00:40:10.000 --> 00:40:15.000
What to do, and I said, Mom, yes, we do. And she was not happy, she is not happy at all about the cuts.
00:40:15.000 --> 00:40:16.000
Mm-hmm.
00:40:16.000 --> 00:40:22.000
And so it's a very choice things about our current administration that I will not say.
00:40:22.000 --> 00:40:28.000
I will not put her on blast in that way. Um, but….
00:40:28.000 --> 00:40:34.000
She said, this is just awful. I don't… I don't understand why you would do this. And I said, yeah….
00:40:34.000 --> 00:40:44.000
It's truly awful, among the…. Play invincible truth is, I use hyperbole to get my point across a lot, but this is not hyperbole.
00:40:44.000 --> 00:40:51.000
People that I know. Right now, will die because of this.
00:40:51.000 --> 00:40:52.000
Uh, this legislation. And she was like, wow, that's….
00:40:52.000 --> 00:40:58.000
Yeah.
00:40:58.000 --> 00:41:02.000
That's horrible events. That's true.
00:41:02.000 --> 00:41:03.000
Mm-hmm.
00:41:03.000 --> 00:41:11.000
So, even though small conversations. Uh, don't put yourself at risk for violence.
00:41:11.000 --> 00:41:12.000
Yeah.
00:41:12.000 --> 00:41:18.000
But find what moments you can to be honest about the disabled experience.
00:41:18.000 --> 00:41:23.000
Absolutely, and… and you can be creative about it. Like, I… I think….
00:41:23.000 --> 00:41:31.000
I think the way that in recent years, we've really boiled protests down to marching in the streets.
00:41:31.000 --> 00:41:37.000
Is a real disservice to what. Protest and activism can be.
00:41:37.000 --> 00:41:46.000
And, you know, and so this is true of queer pride, this is true of disability pride, this is true of any identity that you're proud of, or any issue that you care about.
00:41:46.000 --> 00:41:55.000
There are so many ways. To… to live into that sense of pride, to… to be active in the movement.
00:41:55.000 --> 00:42:00.000
You know, if… if the marching in the streets protests feel really important to you.
00:42:00.000 --> 00:42:12.000
You can support from home. You can be somebody's emergency contact, or somebody's, I'm gonna call a lawyer if you don't check in with me tonight, and, you know, find out what's….
00:42:12.000 --> 00:42:19.000
Get someone to go looking at checking police stations for you. You know, like….
00:42:19.000 --> 00:42:23.000
There… there are so many… so you can support that from home.
00:42:23.000 --> 00:42:38.000
Uh, creativity and artistic expression. Is… is huge. You know, those… those kinds of performance things, of, like, throwing your own funeral, but also writing poems, making videos, making art.
00:42:38.000 --> 00:42:44.000
Like, you can… you can share that in your community, you can share that online, like….
00:42:44.000 --> 00:42:49.000
There… there are just…. As many ways as you can think of.
00:42:49.000 --> 00:42:57.000
To express yourself. You can use those mediums to express disability pride.
00:42:57.000 --> 00:43:01.000
And so, like, I just feel that's very important, because I think so often.
00:43:01.000 --> 00:43:14.000
Disabled people feel shut out of…. Wider movements, or of being part of things that we feel like we want to be a part of.
00:43:14.000 --> 00:43:23.000
And disability pride absolutely cannot be one of those things. Nothing, no movement should be, but especially not the one that's about us.
00:43:23.000 --> 00:43:31.000
Yeah. Yeah, absolutely. That's… that's so, uh….
00:43:31.000 --> 00:43:39.000
So interesting that you end right there, because I would like to, as we begin to sort of.
00:43:39.000 --> 00:43:46.000
As the airport is in view, we're not necessarily landing the plane yet, but the airport is in view.
00:43:46.000 --> 00:43:47.000
Mm-hmm.
00:43:47.000 --> 00:43:55.000
Uh…. I think as disabled folks, we have a real opportunity in this day and age.
00:43:55.000 --> 00:44:01.000
To, um…. Take advantage of where….
00:44:01.000 --> 00:44:09.000
Our pride movement is vis-a-vis where…. Um, LGBTQ is?
00:44:09.000 --> 00:44:10.000
Mm-hmm.
00:44:10.000 --> 00:44:20.000
Ia, et cetera, et cetera. Um…. Because disability pride is still….
00:44:20.000 --> 00:44:23.000
Under the radar enough? I mean, yeah, yes.
00:44:23.000 --> 00:44:26.000
Mm-hmm.
00:44:26.000 --> 00:44:35.000
If you go to large-scale disability pride movement in, like. New York, Chicago, LA, etc.
00:44:35.000 --> 00:44:39.000
You're gonna find Coca-Cola and…. You know, spawned Target and sponsored, and what have you.
00:44:39.000 --> 00:44:43.000
Sure. Mm-hmm.
00:44:43.000 --> 00:44:52.000
But we're still young enough, relatively. That we have that… that sort of….
00:44:52.000 --> 00:44:57.000
Uh…. Melitin Edge.
00:44:57.000 --> 00:44:58.000
Mm-hmm.
00:44:58.000 --> 00:45:07.000
And we can be sort of…. Aggressively out there, and it's much more about….
00:45:07.000 --> 00:45:12.000
We're alive! We're here….
00:45:12.000 --> 00:45:21.000
And we're, um…. We're demanding of not just recognition, but attention.
00:45:21.000 --> 00:45:22.000
Um, that I think has been, as we spoke about last year.
00:45:22.000 --> 00:45:27.000
Yeah.
00:45:27.000 --> 00:45:36.000
Largely sanded off and polished up in the…. The, uh, LGBTQIA plus pride movement, uh….
00:45:36.000 --> 00:45:37.000
Mm-hmm.
00:45:37.000 --> 00:45:44.000
And, uh, thankfully, there's been a movement, there's been a move inside of that.
00:45:44.000 --> 00:45:49.000
Praise movement to kind of restore some of that, that, uh….
00:45:49.000 --> 00:45:50.000
Absolutely.
00:45:50.000 --> 00:45:58.000
Aggressively social protest edge, but I think the, uh…. The opportunity that Disability Pride.
00:45:58.000 --> 00:46:07.000
There's enough of that authentic badass…. Impulse left to really be mobilized if we can do it.
00:46:07.000 --> 00:46:10.000
Uh, effectively.
00:46:10.000 --> 00:46:15.000
Absolutely, and I…. I think the other thing that.
00:46:15.000 --> 00:46:19.000
Really…. I love about….
00:46:19.000 --> 00:46:25.000
Our movements is…. I think even when….
00:46:25.000 --> 00:46:33.000
You yourself feel you can't do…. What you'd like to do for the movement. You know, that, like, because there are folks that I know, like.
00:46:33.000 --> 00:46:40.000
Have great creative and intellectual and, you know, all these different things that they can contribute.
00:46:40.000 --> 00:46:48.000
And also, you know, need to be sleeping for 18 hours a day. And, you know, just… on any given day, you're not.
00:46:48.000 --> 00:46:55.000
Always gonna be able to do. What you might want to do for the movement.
00:46:55.000 --> 00:47:01.000
And I think…. Part of what happens when….
00:47:01.000 --> 00:47:06.000
We are as visible as we can be, whenever we can be.
00:47:06.000 --> 00:47:10.000
Is we become…. Recognizable to one another.
00:47:10.000 --> 00:47:19.000
That when I look around and… and I keep using so many, like, visual metaphors for a blind person, it's wild. Um, but….
00:47:19.000 --> 00:47:20.000
Hm.
00:47:20.000 --> 00:47:28.000
You know, when I, you know, scroll through my Facebook feed and see all of these badass activists.
00:47:28.000 --> 00:47:36.000
You know, writing and speaking out and going to protests and, you know, seeing the ADAPT activists get.
00:47:36.000 --> 00:47:44.000
Arrested while… while protesting the, uh, the budget bill. That….
00:47:44.000 --> 00:47:49.000
Hope doesn't even feel like quite the right word for what I feel.
00:47:49.000 --> 00:47:54.000
Because I feel like…. Hope doesn't quite have enough teeth.
00:47:54.000 --> 00:47:55.000
But it's… but it's something like that. It's… it's a sense of….
00:47:55.000 --> 00:48:00.000
Yeah.
00:48:00.000 --> 00:48:08.000
We… we are still…. Deep in… in the woods, in terms of….
00:48:08.000 --> 00:48:15.000
The forces that want us to not exist, and the forces that are actively trying to kill us.
00:48:15.000 --> 00:48:23.000
And yet, there… there is this protest. There… there is this refusal to be silenced.
00:48:23.000 --> 00:48:28.000
And when I participate in that, and when I see other people doing it.
00:48:28.000 --> 00:48:32.000
I'm aware that that will always be true. We… we will not….
00:48:32.000 --> 00:48:34.000
Yeah.
00:48:34.000 --> 00:48:40.000
Go away. We will not be silent. And….
00:48:40.000 --> 00:48:46.000
In some ways, more than, you know, like, there's a different kind of….
00:48:46.000 --> 00:48:55.000
Of hope and excitement that I get when we have some sort of civil rights victory, or some sort of… or, like.
00:48:55.000 --> 00:49:02.000
Dreaming about the future accessible utopia, like, that's… that's one form of hope.
00:49:02.000 --> 00:49:09.000
But I think there is another form of, like, yeah, like, we know this is gonna be a really long and painful battle, we know that.
00:49:09.000 --> 00:49:14.000
Most… pretty much everyone alive is not going to see it.
00:49:14.000 --> 00:49:26.000
Fully fulfilled in our lifetimes. And yet, there will always be resistance, there will always be people caring for their community.
00:49:26.000 --> 00:49:29.000
We as a community are gonna make it through this.
00:49:29.000 --> 00:49:36.000
Yeah. We… we will not be, um….
00:49:36.000 --> 00:49:47.000
Daunted and destroyed, even if we are…. Occasionally defeated or at the best of times, things move slower than we would like them to.
00:49:47.000 --> 00:49:51.000
Exactly.
00:49:51.000 --> 00:49:59.000
Well…. I think, uh….
00:49:59.000 --> 00:50:00.000
I think that's as good a place to stop as we're gonna find.
00:50:00.000 --> 00:50:05.000
For fear of, uh, not wanting to…. Yeah, I….
00:50:05.000 --> 00:50:15.000
I think I would just, um…. Want to end by saying, um….
00:50:15.000 --> 00:50:26.000
Again, as we didn't… as we did in the beginning, woof!
00:50:26.000 --> 00:50:27.000
Mm-hmm.
00:50:27.000 --> 00:50:35.000
We know it's… it's challenging out there for everybody. Um… Particularly for people of diverse identity and embodiment.
00:50:35.000 --> 00:50:36.000
Mm-hmm.
00:50:36.000 --> 00:50:47.000
Uh, right now. So, we want to… want you to know that we are thinking about you, and we are sending positive energies and prayers and vibrations, or.
00:50:47.000 --> 00:50:56.000
However you want to frame that. Towards helping you find at least one way in the coming week.
00:50:56.000 --> 00:51:03.000
Where things are good, and there… there were…. That you can find at least one thing that….
00:51:03.000 --> 00:51:08.000
Even if you're not doing okay, we're not asking everybody to be okay.
00:51:08.000 --> 00:51:09.000
Mm-hmm. Mm-hmm.
00:51:09.000 --> 00:51:17.000
Because folks are not okay right now. But we're hoping that you can find at least one thing this week.
00:51:17.000 --> 00:51:19.000
That you enjoy. So, uh, we usually say go out and put some good into the world.
00:51:19.000 --> 00:51:24.000
Yeah.
00:51:24.000 --> 00:51:31.000
They'll say that. Find one thing you enjoy this week, and uh….
00:51:31.000 --> 00:51:34.000
Move towards that thing.
00:51:34.000 --> 00:51:39.000
Yeah. Yeah, because that's… that's an aspect of disability pride that I….
00:51:39.000 --> 00:51:48.000
I don't think we got into as much as the…. It is an act of defiance and resistance to take joy in our lives.
00:51:48.000 --> 00:51:58.000
You know, we've said that on this show before, so…. If… if the… whether or not there are other things you can be doing for disability pride.
00:51:58.000 --> 00:52:02.000
First and foremost, find some joy.
00:52:02.000 --> 00:52:07.000
Exactly. Well, friend, do you want to….
00:52:07.000 --> 00:52:11.000
Wrap up and tell folks where they can find us, and other things such as that.
00:52:11.000 --> 00:52:20.000
Absolutely. Absolutely. Thank you so much for… first of all, thank you for having this conversation with me, Justin.
00:52:20.000 --> 00:52:26.000
And thank you everyone for listening, we're so glad that you joined us.
00:52:26.000 --> 00:52:44.000
And if you have, uh, questions for us, if you have something that you'd like us to discuss in the Q&A segment, or an idea for a show, we would love to hear from you. You can reach us at pwp at thejulianway.org, that's.
00:52:44.000 --> 00:53:08.000
The Julian, J-U-L-I-A-N. W-a-y. Um, speaking of the Julian way, um, something that we'd like to mention here is, uh, we, we haven't announced this on most of our socials yet, but we have a matching campaign for fundraising that's ongoing.
00:53:08.000 --> 00:53:21.000
Um, so starting, uh, it's… it actually started at the, uh, at the beginning of June, but starting from the moment you hear this, uh, every fun, every, uh, dollar that… that we.
00:53:21.000 --> 00:53:28.000
Receive in the months of July and August is going to be matched by, uh, one of our, uh.
00:53:28.000 --> 00:53:46.000
Most ardent supporters, the Wayne Pat Hargrave Foundation. Uh, so if you've been thinking about giving to the Julian Way, and you're looking for a good time, uh, that would be… that would be now. Uh, you can give at thejulianway.org and click the donate button. That link will also be in the show notes.
00:53:46.000 --> 00:54:03.000
And if you enjoyed this podcast, if you get something out of it, we would so appreciate it if you would go on Apple Podcasts and rate us 5 stars, maybe leave us a review, and tell a friend. If you know somebody who you think would enjoy this show.
00:54:03.000 --> 00:54:16.000
Uh, please let them know. And you can tell them, and you can be reminded that you can find the show wherever fine podcasts can be found, Apple Podcasts, Spotify, Amazon Music, iHeartRadio.
00:54:16.000 --> 00:54:23.000
All those good places. And we hope to see you back here again in two weeks, and until then, friends.
00:54:23.000 --> 00:54:29.000
Go out and put some good and some joy into your lives and into the world.
00:54:29.000 --> 00:54:30.000
Thanks, friend! By….
00:54:30.000 --> 00:54:42.000
Thanks, everybody. Bye!
00:54:42.000 --> 00:54:45.000
Uh, in the soft record button.
00:54:45.000 --> 00:54:53.000
The finding