Speaker 0 00:00:05 Greetings and welcome to the podcast version of disability in progress. I am Aaron Weston dork. This is KFA high 90.3 FM Minneapolis and Kate fai.org. This is the episode for August 5th, 2021. When I took over the shell, when broadcast an interview I did with Emily and Kim Zella from Deviney FM you out of New Jersey. Now the original broadcast had references to film premiere that has passed, and it would be irrelevant to fuck on the five counts, but this interview was pretty good aside from a few typos. So I will throw it down to you as well as the segment that followed me, sit back and enjoy. Welcome
Speaker 1 00:00:53 To in real life. I'm Emily and I am Kim Zilla. So yeah,
Speaker 2 00:00:58 We're here for a installment. Number two. We're we're on a serious mode right now. Yep.
Speaker 1 00:01:04 We're on a serious, a little bit of a serious kick or at least we're trying really hard to suppress our, our giggles on a weekly basis. Um, it's my mother's request.
Speaker 2 00:01:17 You laughed too much, Kim. No, one's going to take you seriously
Speaker 1 00:01:21 Or serious. Um, so we're, we're two episodes. This is our second episode of our people in your neighborhood series. Um, which briefly if you missed our installment last week, you can go back and listen to it at WF amu.org/playlist/i L. Um, and that one was called the gaze of our lives. Get it, um, where we talked to three really interesting people that we know, um, who happened to be gay and, um, got they're really personal stories. And this week, um, we're talking to really interesting individuals who also happen to be disabled.
Speaker 2 00:02:04 Perfect, perfect summary, Emily. Yeah. You know, a little spotlight on some really interesting people. And, um, this was an interesting thing for us because it was Aaron from Minneapolis that actually brought up the subject to us last week in our message board. And
Speaker 1 00:02:22 Sadly, when we talked about doing this series and
Speaker 2 00:02:25 We talked about every other minority group in every other marginalized group that, um, you know, may be affected just by difficulties of life and also by regulations and by, you know, by recent government changes where there's a little bit of, uh, uh, less focus on, on
Speaker 1 00:02:46 The disenfranchised groups that were, they were interviewing. So
Speaker 2 00:02:50 Thank you Erin for that. And we're going to be actually talking to Erin, uh, first and he's going to be giving us just his perspective on life. And it's a really interesting interview for those who don't know Erin from Minneapolis. He's a really talented guy from Minneapolis. And, um, you know, he does some engineering on the side. Uh, he's helped out with previous episodes on WFM, U he's a frequent commenter on many of the WFM shows and also calls in. And you might recognize him just from his text to speech, um, that he uses kind of
Speaker 1 00:03:30 Like a Steven. It sounds like Stephen Hawking, like if only cooler. Oh yeah. His is actually, which makes me wonder, like Stephen Hawking has had this for a really long time. You think they could get him a, like a cooler sounding voice than that? Cause that was our first question with Aaron Aaron's Aaron's voice that he uses is a very announced early broadcasty voice. Um, and what did he say to the, he had this request of us make me look smarter than I am there's Aaron. Yeah. Um, although Erin is very smart and articulate and hilarious. Um, when we were doing one of the really challenging things about doing this interview for us, uh, Kim and I have a tendency to step all over each other's words and Steph all over our interview subjects, words, um, we keep up sort of a rapid pace of conversation. And this is an interesting challenge for us because with, with text to speech, um, you know, of course we ask Aaron a question and he has to, uh, type out his answer and then we wait for him to type it out and then wait for it to come through the speakers on Skype. And so we had, it was a really, it's an exercise in patience, patience, which he pointed out. You just have to be patient. And sometimes say to me, we weren't so good at it. Kim, just shut up.
Speaker 2 00:05:01 And just to preface, I remember us actually talking about our Anna's sale interview and how Anna taught us to kind of be silent during silent moments. But that's the story we were telling during the silence,
Speaker 1 00:05:16 Kim and I are giggling and talking and being like, oh, remember how Anna said we should be silent. We're doing such a good job right now of being so quiet. We are taking her advice. We are such pros. We are amazing. Um, and, um, so Erin, but Erin was really, really patient with us and had a really great sense of humor, um, throughout the whole interview, even playing this during some of the silent moments. Um, so, uh, without, I guess without further ado, we'll let you hear from the man himself,
Speaker 0 00:05:59 The name's Aaron Western dork known to FM you list are nurses. Aaron in Minneapolis, Maya achievements is living past two weeks and defying the experts, which is not easy to do. I hosted podcast. I have a job. I have my own van, which I can use at any time. I live in dependently with a staff that I can hire and fire at. Will I have been listening. So w F M U for 10 years and helping them out financially and also contributing other ways I helped out in the show that used to be in your time slot three years ago, called why or why with Andrea? So Lindsey, I was her intern slash censor for her time on her. And now she has it as a great podcast. When I intern for her, she would send me the show early Wednesday morning, and I would listen to it and tell her about any curse words.
Speaker 0 00:06:57 She forgot to bleep while she was editing at 2:00 AM. I also contributed a few shows when she needed time off one concern, feminism in country music, and one was obscure, holiday music aired on Christmas Eve. I also call into shows on here, baffling house with my text to speech set up and trying to be funny. People think I just sit home all day, feeling sorry for myself. Well, some people did anyways, on the comments board, they asked if I am real, Dave hung up on me the first time he heard and then Tom sharp Ling boy, I had fun with him. I just gave him sass.
Speaker 0 00:07:42 I was born 31 and a half years ago. And when I was born, I couldn't take a breath by myself at all. So I was brought into the ICU and the doctors said I was done for their prognosis was two weeks max. My mom vividly remembers one doctor saying to the response, to the question of what can we do to make our kid live. And he looked her dead in the eye and he said something like, there is nothing at all you can do. He will choke on his secretions and die. And he just walked out of the hospital room without another word. Well, thankfully my parents didn't take to that kindly. They began to do anything and everything in their power to keep me alive. It was a fight just to get me home from the hospital. Also, what's interesting is around the same time another boy was born with the same diagnosis and the doctors told his parents the same thing.
Speaker 0 00:08:47 That's, it's better to let him die then to live this very difficult way of life. And so that boy ended up dying when he was two weeks old, it was a five just to get me home from the hospital. Then once I did get home, they have to do range of motion exercises on me eight times a day. That's how I am so independent today, I think. And yes, their life to change. Was it difficult? Yes. Was it necessary considering the alliterative? Of course now at this time, my family was living in a small town called peace. And now we're north of the twin cities in Minnesota. That was about 200 people at the time. Today it's around 900. They had to deal with around the clock nursing from the local hospital. So that town started to feel a little more cramped after I came along.
Speaker 0 00:09:45 So we moved when I was one to a suburb of Minneapolis. He dine, I think thoughts weren't I got the T right tube is after I moved. And during the same time I got a feeding tube installed in my stomach. So I stayed in the dying for 25 years until I moved out to my own place here in Hopkins six years ago. And of course it was rough at first, but then I discovered radio and my love of it. And I started using that as my outlet. It has been great to ever since I communicate a variety of different ways with my family. I use the manual of 26 letters, sign language alphabet. I tried to learn American sign language in high school, but all I got from that was a C minus over two years, but I also have an iPad and keyboard mounted on my wheelchair. And I use an app called text to speech on my computer and iPad. And then I call who I need to call using Google voice and a program called sound flour.
Speaker 1 00:10:57 We asked Erin about, uh, what his daily routine looks like a little bit, uh, to give us an idea of, um, what his day-to-day life is like. And he told us this,
Speaker 0 00:11:10 I wake up my night nurse gets me off my vent, which I use at night. We do treatments, shower, get dressed, et cetera. That takes about an hour. Then I usually go back to bed, then get up, eat, check, what's going on online. Then three days a week, I go to my job, but a chiropractic practice where I help with marketing, then get home, take a nap, then do whatever I want. But mostly more work from home. Run your runs with my personal care assistant. They drive my van to Reaver. I want within reason I go to bed whenever I feel like it. Sometimes I go out to bars for ass, the drunks there, and sometimes I play percussion with local bar cover bands. So that's fun. During the day I work on my podcast, the cavalcade of wander available on mix cloud, which is just me playing music. I find interesting just like WFM Liu, the Jays do.
Speaker 1 00:12:20 We also asked Erin about how the Americans with disabilities act that was passed, uh, 25 years ago has affected his life. And he had this to say,
Speaker 0 00:12:30 All of my staffing is covered through something called the Cadi waiver, which covers services I use. So all my nursing, my clues then ramp repairs. All of it that's covered when that was passed. In 1990, I was able to ride city buses and get up on sidewalks and crosswalks. And a variety of other stuff basically had gotten me into the community. The system is now, it's very weird to put it mildly, but it worked when that was passed in 1990, I was able to ride city bus. I am not sure of the current laws on the books, but what I do know is this statistic, which is 70% of people with disabilities are unemployed. The hauling Teitelman program debates are very nerve wracking, but I have hope people will fight to keep social security. Intact. People with disabilities are often not covered in the media, but the fact remains. We cover every race, every nationality, every gender, every sexuality, every country, everything we are considered the largest minority in the world. Basically. Uh, lots of people with disabilities are stuck inside group homes. So I think it's a case of out of sight, out of mind, but people are out there fighting
Speaker 1 00:13:58 One thing we've always really wondered. Um, and this came up in our interview that we did with velvet crayon in our circus episode is how, um, people who aren't disabled treat disabled people differently when they come into contact with them. So we asked Erin about it. Um, if the people he meets are ever to careful around him, and if that impacts the sort of connections that he makes with the new people he meets, and he had this to say
Speaker 0 00:14:27 Years ago, my mom got me a bumper sticker for my wheelchair that said, speak softly. This is a wheelchair, not the hearing aid, which was in response to people's voices, raising their voices. If you decile bells, every time they talk to me, there was another bumper sticker that said, pat, my head, and I'll break your legs with a picture of a rhino on it. And my mom wouldn't let me get that one. What I am most proud of is having the independence I have to live the life I want without apologies. And most of that independence I gained through my parents fighting the good fight. I am very fortunate to be able to be alone for a good chunk of my day, the PCA chest come and go. And I ask them to, if I was on a vent 24 7, it would be a different story, but I am off during the day.
Speaker 1 00:15:33 We also asked Erin to tell us a little bit about a court case that he was involved in concerning his disability and the private school, uh, at which he was enrolled, um, when he was a kid. So here's, uh, Aaron telling us a little bit about that.
Speaker 0 00:15:52 When I was in the first and second grade, I attended a private religious school and I had to have a paraprofessional with me in the classroom. And sooner or later that public school district said we won't provide a para in a private school. So I had to go to a public school. So we sued the district and it was kind of dumb because the lawyer for the public school district just happened to go to kindergarten with a judge. He talked openly about playing in the sand box with the judge when they were little and the judge then proceeded your role in the school. District's favor, funny how that works. So of course we appealed and got a new judge and we won the case. I still finished up my high school years of the public school here, just because I think it was too much money to switch back to private.
Speaker 0 00:16:50 And that was not the best because I got the parents there just to do the work for me when I was a little crap. So I graduated 12th grade with an eighth grade math skill set. Basically the school was more interested to me and my parents, at least in getting me out of there, then getting me a solid education. So when I attempted to do college, it was not successful. I think because I was into loud to work as hard as other kids in high school, they just wanted me out of there. The system is now, it's very weird to put it mildly, but it works for me. I am the exception to the rule. I am, I think, in between being totally independent and totally dependent on others. For example, I purchased a brand new top of the line power chair this year, and insurance wanted to know how many hours per day I would use it and how it helps me, which I was like, why is this relevant information?
Speaker 0 00:17:58 I need this chair, no questions asked. And my month thought the same thing. And luckily my mom is a fireball. So she wrote some strongly worded emails to the proper people. And I got it. No questions asked. It took a few tries, but it worked. I want to close by saying, thanks for allowing me to talk on your show. I have listened almost since week one when play pigeon tipped me off to your great show. I think the closing thought that I had was look out for each other, even when you don't agree. I remember a few years ago I was rather sick. My throat was so dry. I was coughing up blood and I needed a special medication. And my mom was on the phone to a pharmacy and they didn't have it in stock. And she was at her work at the time on her coworker, overheard her Rutter, the phrase, my son needs X medication.
Speaker 0 00:18:59 He is coughing up blood. And this coworker just happened to have a son who use this exact medication. And he had a few extra doses he didn't use. So she offered my mom the rest of the doses, highly illegal, but she heard I had a need. And she risked her to get things done, which is amazing. We have to work together in times like these to bring it back full circle. When I was born, I was in between life and death. So the tiny town of peace gathered in the beautiful church they have there and parade. Most of the town came to pray and I never forgot Thor ever. That was me back in 2016 on a WFM, you in New Jersey. Apparently back when I didn't proofread the stuff, I say thoughts basically because I commit typing errors regularly, and I am better at slowing down and seeing the typos before going out into the world. Now on this show, Sam and others often talk about resources and organizations for all sorts of disabilities. But this week we will dive into the theater when you have disabilities, how it affects the body. And so, so this interview on him about to play kind of gets that talking about spoon theory with another WFM youth community member named Rachel, who has her own show on the station. I think this is from the same show I was on enjoy.
Speaker 3 00:20:37 I'm Rachel I'm from New Jersey. I have a series of invisible illnesses, um, which is a term I've only really come across, maybe in like past 5, 5, 10 years, like growing up that isn't something that I had to call on. And it's, it's cool that, that exists now. Um, it's interesting, uh, with the invisible illnesses, there's, um, a woman, I forget her name, but she's actually from New Jersey and in a New Jersey mall, she came up with the spoon theory and the spoon theory. Cause she was with her best friend trying to talk about like, how, how do you go throughout your day? Like, what's it actually like in order to frustration, sitting in this half empty diner, she runs all the tables and she grabbed all the spoons, made a big, this was spoons. And she looked at her friend and said, everything you do all day takes a spoon.
Speaker 3 00:21:33 And if you make, if you take a shower, that's one spoon. If you do the dishes, that's another spoon. If you go out and have fun, that's probably three spoons. Yeah. You only have so many spindles, a normal person might have like 30, you've got 15. Do you make dinner? Or do you have chips and lay on the couch so that you can do something tomorrow? Um, this is like a, a very, uh, uh, shortened version of his Boone theory, but that's the jest. And um, so my health story is having invisible illnesses and a deficit of spoons for a very long time. I'm um, I was born premature. Uh, they thought that I was going to have some health problems or severe, uh, so deficits, but that happened to not be the case. Um, I lived, they didn't think I was going to live and I seemed fine.
Speaker 3 00:22:32 Uh, I was a little brainiac kid in fact, but, uh, I started to have pain towards the end of grade school. They discovered I had scoliosis. Every doctor said scoliosis isn't supposed to hurt, even though I kept complaining that it was hurting. Um, and what I didn't know that I now know is that I have a connective tissue disorder, genetic tissue disorder, which is probably why I was born premature. And it affects, um, all your connective tissue. It's basically everything. That's not bone. Um, so, uh, your, the tissues between your, uh, between the muscles, like the facia, essentially, um, all your organs, so it all, and there's different types of this syndrome. It's Ehlers Danlos syndrome and some more vascular, some are more hypermobile. Like when you see people that can do those circus Trix, where they can like bend their, all their limbs all crazy and they can pull their face skin all like out like that, that's they probably have Ehlers-Danlos I can't do that stuff.
Speaker 3 00:23:35 Um, uh, if I could probably would have been caught earlier, uh, my family is very kind of suck it up, you know, pulled up my bootstraps, like, you're fine, don't worry about it. Everyone hurts. Everyone has problems. And so I honestly didn't think it was as, as weird as it was paired with, uh, a mother who believed in lots of whoo, shall we say, uh, not, not entirely misguided, like herbal supplements and stuff. Like they have some effect, but a bit, a bit far on that. Um, so I didn't get to see a lot of real doctors. And so I was having neurological problems from the scoliosis and the connective tissue disorder, um, and pain because when your joints are extra mobile, your muscles get really tight to try to keep them steady. So your whole body kind of spasms, but you look fine. Um, uh, I was, I spent a large part of my twenties, uh, kind of battling with family to try to get them to understand that I was not well.
Speaker 3 00:24:47 And they generally just didn't believe me, um, because it's not visible because it's not visible. Um, because they, it was, it's strange that the idea that I would be lazy or trumping something up is the first thing that comes to mind. Because prior to this, I was a very overachieving kid, you know, like I would memorize Shakespeare for fun, that kind of kid, you know, like her mind kind of, uh, totally. Um, but that seemed to be the attitude. Uh, I, when I went to college, um, I ended up, I also have a polycystic ovary syndrome. There's like a whole bunch of stuff that I have polycystic ovary syndrome, which makes her hormones all wonky. I didn't realize this was a problem. And I ended up going on the pill when I first went to college and between the depression from that and the muscles on the right side of my body all started to weaken, which included my eye muscles.
Speaker 3 00:25:42 So I started to see double, which I didn't realize is what was happening. And so I thought I was hallucinating. And between that, and being on the wrong birth control pill, I thought I was going crazy, terribly depressed, ended up dropping out, had no idea what to do. Um, until months later that I looked at all the crazy side effects and was like, maybe I shouldn't be honest. Um, and then, uh, it's been a kind of a steady decline of, of health ever since my right side is slowly going numb neuropathy, stabbing pains throughout my body. It sounds, I feel like, um, ground glass in your bloodstream, um, difficulty keeping jobs, uh, throughout my twenties, uh, keeping jobs solely to get health insurance throughout my twenties. And instead of pursuing any creative dreams that I had, you know, I always had the, the idea that I had to be, um, secure.
Speaker 3 00:26:35 And I told myself to not do the trade of stuff. I remember I had this conscious decision that because drawing my right hand doesn't work and my eyes are cross-eyed drawing became difficult. And I told myself, you know what, instead of being upset, instead of making myself cry every time I tried to draw, just put it on hold and you can go back to that. Once you get fixed, just keep going to doctors, figure out what's wrong, you'll get some spine surgery or something, and then you could do your life. And it's not the kind of thing you can fix. Yeah. So I'm a bit frustrated that I spent my twenties and majority of my thirties hunting down something that I wasn't going to catch.
Speaker 2 00:27:27 How do you end up, I mean, it sounds like you're for most of your adult life and young adult life, you're trying to, you're trying to figure out ways that you can be somewhat healthy or even survive, and you're not even touching on like, feeling fulfilled in your life, right? I mean, are you able to, with the amount of spoons that you're given, are you able to find a way to have a fulfilling life?
Speaker 3 00:27:54 It's hard, uh, especially when, when you already have a deficiency of the spoons and you're working at some crappy corporate job that takes up most of your spoons, but you know, you're doing that for the insurance. Um, you don't really have much left for yourself when you're, you're battling to get through work and hoping to not have too many, uh, hoping that you don't call in sick too many times, or, uh, you're late too many times so that you can actually keep the job for which you, you have this health insurance and hope this time, maybe the doctors, uh, figure out what's wrong. I think I ended up getting my self insurance five separate times and sort of the whole process of trying to figure out what was wrong and go through all the doctors until I eventually ended up applying for disability. Since I got disability.
Speaker 3 00:28:43 It's the first time I've been stable in my adult life, even though it's a patients, it's, it's such a meager amount of money that they expect you to survive on, but it's the first time, uh, since my early twenties that I wasn't afraid that I would run out of money to pay my rent for some reason and have nowhere to live. So it's, it's given me, even though I can't afford to go out most days, you know, even though, um, uh, I tend to have only $80 after rent and bills are paid for the rest of the month. Like, you can't really have fun, but at least, at least I can be at home and feel secure, which is something that I didn't have for most of my twenties and thirties before the, the act. Um, I don't, I don't think this has been changed at all before the act, when I was employed through Samsung through some crappy computer cafe, I ended up getting fired or I quit, I, which, and I was on a disability and I could pay Cobra, which is the thing that lets you keep buying your own insurance, which is ridiculous.
Speaker 3 00:29:52 Now that you're unemployed, you're making even less money and they expect you to come up with an extra $300 to pay for your insurance out of pocket. Um, which, which I was doing as long as I humanly could, because before the disabilities act, you couldn't get treated for preexisting condition. So there'd be this balance. Every time I got a job and got health coverage, you would have to phrase things the right way and not say, I hope that they didn't write it down the last time, because if they already had written down that you had this thing, you couldn't have that thing treated, it wouldn't be covered for at least I think like year and a half or two years of having that insurance, they wouldn't cover pre-existing conditions. Uh, the reason that I ended up applying for disability in the first place is because I sent in my MRIs to this place called he already Institute.
Speaker 3 00:30:44 And they treat this thing where the back of your brain slides up the hole in the back of your skull and plugs the hole where this river spinal fluid flows into your brain. And then down your spinal column, it's this it's supposed to flow kind of like a vascular system. And if your brain plugs, the hole goes through the hole, whatever it plugs that. And it can cause all these symptoms, um, which is very common with people that have Ehlers-Danlos. I didn't even know I had Ehlers-Danlos at that time, but this was what I was looking at my MRIs I've, you know, I look up so much medical stuff that I wish I didn't have to, but I know all this stuff now
Speaker 4 00:31:20 And become your own advocate. Yeah, yeah, yeah. And I'd
Speaker 3 00:31:23 Sent my films to them and they wrote back and said that I was a candidate, which was like the first time I ever got a real, uh, thing, but they didn't take any insurance. The only insurance that they took was Medicare. And so that was when I decided, well, I'm hardly staying afloat as it is doing some freelance graphic design stuff I'm going to apply for disability. Yeah.
Speaker 1 00:31:44 Well, how, but how like validating must that have felt to finally have like after so long of insisting, like, no, there's something wrong. No, there's something wrong to have somebody say you qualify for this.
Speaker 3 00:31:59 That was very, I think I cried when I got the letter and I was like, oh my gosh. And then I realized I couldn't go. Um, and that's when I started to, uh, apply for disability, which took three years. As soon as it finally came through three years later, I sent my new films to them and they said, I wasn't a candidate. Huh? I don't know why,
Speaker 2 00:32:17 How old were you when this was all going through and how old are you now? I am. If you don't mind me asking you, you don't mind your asking. I am,
Speaker 3 00:32:27 I'm 39 for the next two weeks. And, uh, at the time of applying, I was, I think like 33, 34. It wasn't until I got on disability, that I went to a geneticist that, uh, actually diagnosed me with Ehlers-Danlos once I finally got Medicare, uh, I was in New York city and I had access to ho two doctors at, um, Cornell and Columbia in the hospital for special surgery. And a lot of them do take Medicare because it is people who are either on disability or aged. And they're the ones that have the most medical needs. Uh, and when you're in Manhattan, that means it's going to be rich people and athletes. So these are going to be doctors at the top of their field who will actually treat you well.
Speaker 2 00:33:12 And how about medication? I mean, is that, that must be extremely expensive. I mean, are you on multiple medications? Whoa, am I? Yeah, I'm always, I'm always, uh,
Speaker 3 00:33:23 Trying to get it back down to a smaller number. Um, uh, my medications now, I only take like maybe four on a regular basis, maybe five, um, it's something like 1000, $200 a month. One of, one of the pills is like a thousand dollars a month on its own. Like that's one of them. And then there's like a bunch of other, it's ridiculous how much money is costing taxpayers, but it's my medication, you know, I'm not going to say no, but it's insane. Especially it is so much, especially since one of them is, um, derived from marijuana. It's not it's, it's like Marinol, you know, they pretty much took the high out. You take it with food and you don't feel stoned, you know, it's just, it, it mostly it's for the nausea and the pain aspects. Uh, so I'm paying a, a thousand dollars a month for weed pills.
Speaker 2 00:34:22 I had to interrupt here just to talk about the fact that Rachel came across Martin scrawly on Facebook. And if anyone remembers who Martin <inaudible> is, he's that pharma executive, that CEO of biotechnology. And, uh, he became kind of infamous by raising the price of dammit prem and other medications from $13 up to $750 overnight. Uh, he was since fired by this, but he, um, they never reduced the price of the pill, but Rachel, uh, has this story to tell about Martin squirelly
Speaker 3 00:35:02 He's he has evidently been doing these, um, like Periscope rants, where he just sets up his phone and he's like sitting in his computer, talking, talking at the phone and like looking at what people are saying about him in the chat room of it and just talking himself up and being really weird. And, you know, I, I am assuming that he's patrolling to a certain extent because he's talking about how he'll, I don't know, beat anyone up or something. And I made some, some sort of comment on Twitter, out of the thousands of people that are commenting. He saw mine and all of us, and it was the scariest thing. Cause I'm watching on Periscope. Like this is crazy. I'm amazed looking at him talking and he's in bed. And all of a sudden he, he like looks into the phone, like at, out of the screen at me. And it was like, uh, Rachel. Hm. And then I, I have watching him look up my, uh, my Twitter, uh, page and he was like, huh. Yeah, I, yeah, I think we could probably have a good time.
Speaker 4 00:36:03 Oh God, that is not
Speaker 3 00:36:06 What I thought that reaction would be. That is not how I thought that would go. Um, and so he ended up following me on Twitter, which is weird. And I thought to, um, ask him the whole reason you said you, you you'd mentioned before that you would write a blog that I posted about the whole difficulty. It is. Um, it is to be on disability. The whole reason I wrote that was because of this interaction with him. Cause I thought if I, if he's now knows who I am, if I have his ear, maybe I can make this count. And so I wrote that whole long thing about like the difficulties of, of being a personal disability and the financial trap, because they make more than $600, then I'll get kicked off disability. Um, if you make more than, uh, $1,500, something like that, and you get kicked off of Medicaid, no matter where the money is coming from. Um, even if it's a gift. Uh, and so I wrote all that up and then asked him about, it was like, do you have, since you understand how medicine works and you know, the health system works and money clearly, cause he's always bragging about being good with money. Maybe you have some ideas and he didn't, but he actually did respond and said good luck and was nice to me, which was also not what I was expecting.
Speaker 1 00:37:19 Wow. Yeah, yeah. Yeah. So you're pretty, you're pretty vocal about your, like in the internet world, especially, I'm pretty vocal about your situation and um, and about like what you're experiencing and what you're going through. Um, can you tell us a little bit about that? Like I know you have a blog and then you, you have Twitter and talk a lot on Facebook about it. Um,
Speaker 3 00:37:40 It's really, it's really mostly born from being unbelieved by family and doctors for so long. Like it's, I've slowed down a lot now, like I'll rant about it, but it's more about how messed up the system is. I'm not, it's not as personal. Like it was really personal. Like I was really venting and really personal for a really long time. I think once I got disability and got a geneticist to diagnose me is when I felt that validation. Um, it's, it's interesting. It's like the opposite. Most people from the outside of a spoonie as you would a disabled person, most people, um, would think you would be sad when you get a diagnosis, but for most of us it's so validating. It's like when you get another diagnosis, you were like high five someone like, yes, there might be not a question. I can maybe do something about it. It's something kind of in my control, maybe somehow. Um, but I think, yeah, being, being vocal about it is, is mostly born of that because, uh, it's something that I feel like I was made to be private about that was invalidated so much it being
Speaker 2 00:38:48 Like an invisible disability. Like if you feel like they're like that there's more judgment. Um, from family, friends, uh, professionals, people that don't believe you.
Speaker 3 00:39:01 Oh, totally. Um, I think that, uh, yeah, uh, it's part of why I use a cane, um, because that's at least a visual kind of signifier. Like I'm not a hundred percent like yeah. You know, um, I used to, I used to tell myself that it was the eyepatch and the cane, uh, that people thought that it was my look and may not actually be for a reason, which is, you know, kind of my goal, trying to make a whole cripple chic looked like a super-villain kind of thing that makes
Speaker 4 00:39:33 It really working great.
Speaker 3 00:39:38 I'm going to try to make it look cool. Um, but definitely it's also difficult because when you're a person like me, who doesn't go out much, you will overcompensate because you don't get a lot of social time. And so since you're overcompensating, you're going to look, you know, hyper and effervescent and you're going to be extra boppy. Cause like you're a little bit off kilter because you're not used to being around people. So maybe a little high strong, but like, but also you're like, yeah, I'm out of the house and like I'm wearing
Speaker 4 00:40:07 Outside clothes and
Speaker 3 00:40:10 Yeah. I remember how to do makeup. I has been so long, uh, and, and people see that and even more so don't think that you're really sick. Like really she really legit, like people have said that to me, like, yeah, so-and-so is asking you like she really for real, cause she seems fine.
Speaker 1 00:40:26 And she knew when your medication is working and you're able to get out of the house and to be when you're feeling up to being out there. So they're seeing you at your best because that's when you're going out is when you're at your best, when you're on your medication and it's helping you to feel better and be in less pain and be like have enough spoons yes. To go out. Yeah. And it, it,
Speaker 3 00:40:51 It, it works against you in doctor's offices too, because this has been so long and I'm so matter of fact, I think a lot of times doctors think that I'm not serious about it. Um, I've had to change the way I dress. Uh, I've started to like, I try to dress as close to a Mormon as possible when I go to doctor's offices, if I'm meeting him for the first time, because they tend to not take me seriously. I mean, that's the number one reason that I didn't get diagnosed earlier in life because I was going to doctors since I was 19 saying, you know, I went cross-eyed and I have right-sided, uh, arm pain. Um, but I had a purple Mohawk and was fish nets. They're not going to take me seriously. They're going to think that I'm a drug seeker, which, you know, granted at the time I was in life in general, I was like a party person. But a large part of that was because I was in constant pain. Self-medication was totally self-identification. That was I looking back. I realized that that was my number one. Um, reason for a lot of my party girl life was just to not hurt. Yeah.
Speaker 2 00:42:02 Yeah. Uh, another question I had is just about the stigma of being on disability here, a young, white female that's on disability. So you're kind of going into this world, seen how this world is treating a pretty large segment of the population.
Speaker 3 00:42:24 I think Chris rock did a bit about this, about when his, his, his, his mother died or his father was sick. Um, he was comparing his two parents would both been ill. One of them had died and one of them, he was at that point, rich and powerful and thought her a fancy hospital. And he said, if, if four people knew how different rich people have it, they would freak out. Like it's a completely different world. The amount of respect you're given the amount of time that a doctor will actually spend with you. Uh, and now having fancy healthcare with, with Medicare, a lot of the people that see doctors in the hospitals that I go to, cause I have a rare thing that needs specialists. Um, you're talking about fancy old white Manhattan Heights, like people in their sixties and seventies that goes skiing still, you know, and they're getting their, uh, joints fixed by a fancy doctor. The, the doctors I see are doctors, um, that work in offices that take care of sports teams in New York city. You know, it's, uh, the amount of care and, and an open mind to some herbal supplements. And it's not, uh, it's not such a, a machine of just spitting out some, I'm going to write your prescription, then come back in three months, like some sort of,
Speaker 1 00:43:43 What do you fear? What impacts do you fear from the change in administration specifically from the perspective of your disability? Um, like what do you fear in terms of the change in administration following the recent election?
Speaker 3 00:43:58 I, well, I cried and I know that most of the people that I know online, like in Twitter and Facebook that are also disabled, they were all like sobbing. Like it's a re it was a, it was a real reaction of like honest, mortal fear because being on Medicare, Paul Ryan wants to get rid of it. And he's had a bug up his butt to do that for years and with a Republican controlled house and Senate and with Trump as a clueless puppet, um, I don't see how that's going to happen. You know, like we can protest, but for four years they're going to have complete control. And I don't really see that there's going to be a way to fight it. So I'm afraid of Medicare being privatized. That would be horrible. They want to, um, underfund Medicaid, um, or make Medicaid, at least, uh, uh, privatized instead of, um, by the state, which I've done both because New York and New Jersey are different and it's so much easier in New York make it Medicaid is mostly straight up Medicaid.
Speaker 3 00:45:05 And if a doctor takes Medicaid, you just have to, you just have to have Medicaid. It's, it's upsetting, especially since it's the same people that want to privatize. It also want to drug test people like, so you, you can control from both directions. You know, like if, if the state ran it and paid for everything, then maybe you would have a leg to stand on to say that, like, I want to drug test people that are on Medicaid. If you're actually giving them like enough money to live on it, it was actually like a fun time. Then maybe I can understand your rationale, but people are living in poverty and now you're penalizing them for, I don't know, for what, how does that change? That they're poor, right?
Speaker 2 00:45:42 Yeah. Yeah. I mean, I mean, you're a really smart person and you pretty much have learned the system just because you need to. Yeah. But, and a lot of people are reliant on their parents to be able to assist them with a lot of these programs. Once their parents pass away, how are they continuing to figure out the system without someone else's assistance or an advocate
Speaker 3 00:46:05 It's really complicated. There's also lots of weird pitfalls. Um, if you have Medicaid, for example, if you, there's a certain cap of how much money you can have a tickets, it depends on what state it's around $1,500. People who are most in need don't seem to have any voice at all. That's, uh, you know, I've, I've been speaking through Twitter to a lot of disabled people. A lot of disabled people are online because what else are you going to do? And it's crazy to me that people on disability don't have any say in how social security disability is going to be utilized. Yeah. Shouldn't we let us do that. Maybe we should have a referendum of some kind, you know, like the people that are going to be affected by this the most are the ones that are, have absolutely no say it's interesting. You'll see, like a lot of political tweets and people will be talking about, you know, the fear of Trump and the, the, all the disenfranchised are becoming, uh, uh, are being put in danger because of this. And, you know, you have the LGBTQ, sometimes I sometimes a and like every, you know, every color and every ethnicity and like disabled will never be on that list. It's it's, it's interesting how little it's mentioned. Yeah. I
Speaker 2 00:47:23 Was going to just talk about like, the fact that it's become more acceptable, kind of talk about those personal things. I think even a generation ago, like you kept your business to yourself and that's where I think it's great that you and technology has caught up, that people can communicate more and talk about their own personal struggles and naked where to get out of the house necessarily. Yeah. Where, you know, if, if Facebook wasn't around, you would be Rachel in my world and I wouldn't know what's going on. And I think, again, the parallel between all of these stories is just learning who that one out of five people are in your life that has a disability. And to be able to kind of open up, you know, your empathy and understand what people are doing, because you know, you're going to be more aware of what you're voting for.
Speaker 3 00:48:15 Yes, I, yeah. Yeah. You'll have more of an idea of like, actually this might impact people around me poorly. If I have enough empathy for them, maybe I won't vote for this crazy dude. I agree.
Speaker 2 00:48:27 You giving us some of your spoons.
Speaker 4 00:48:31 Of course
Speaker 2 00:48:32 It could have been, it's a wonderful life, but I think this is you have a pretty incredible life. And I think it's probably doing some significant help towards other people just hearing that they're not alone. So I hope so,
Speaker 3 00:48:46 You know? Yeah. Cause it's, it's lonely. I think that's one of the things that's most frustrating about the naysayers to people on disability. Like it's not fun. It's very isolating. Like I really miss having a job, like even at a cafe, just to have someone element someone to smile to every day, like say good morning to, that's a huge thing. It's, it's very isolating. Cause you can't afford to go out. You don't feel up for going out much and you don't have much exciting to talk about.
Speaker 1 00:49:18 So speaking of the, uh, you know, social media and the online community thing is a really powerful and important form for people with disabilities to be able to connect to one another and not feel so alone. Um, our message board is on buyer tonight. You mean like girls on fire?
Speaker 2 00:49:40 Um, yeah. Yeah. I mean, there's a pretty strong representation of other people that also have disabilities that are talking, um, between each other and, um, a lot of great listeners and a lot of great comments. So I know we're reminding you guys with only five minutes left, but um, if you go to the playlist and comments board, um, there's some really terrific conversations that happen, um, with each of these shows on WFM U. And this really is, I feel like technology really is catching up with people that do feel isolated and they are left at home that they can find that specific not only an audience, but just, you know, a group of people and like-minded people and be able to communicate, you know, in a virtual cafe. Yeah.
Speaker 1 00:50:27 And it's sort of interesting it's it seems like technology is almost, uh, going from like, you know, uh, distancing us to like, you know, I feel like there were so many ways when like, um, you know, Facebook and all of these other online communication forums first came about that. I felt like they were distancing me from other people. And it seems like when they first came about, they served as like an anti, uh, humanizing device. And I think it's really great that there are communities of people that have figured out and identified ways to use those social media tools as humanizing devices and microphones and microphones, absolutely. And microphones and, and ways to connect to one another. And so that, you know, as Rachel said, it doesn't feel quite so lonely and isolating.
Speaker 2 00:51:19 Can you imagine on your low spoon day, back in the day, having to like hike to a library and try to look up in an encyclopedia, like what you think is going on? I mean, now you have at least the opportunities to be on a laptop in your bed or in a comfortable chair, you know, to be able to kind of find those answers that you're looking for and those resources and people
Speaker 0 00:51:48 That was an episode from 2016 of them, the real life, a show that I really loved that aired Dom w FMU, but sadly, it's no longer being made and watch Emily. And Kim's Ella were saying about finding your tribe online. It's true. It's how I got connected and involved with w FMU. I call into their shows and post on their comment boards all the time. It's a great station and inspiration to me and to many community radio stations around the world. This has been Aaron Western dork filling in for Sam on disability and progress. The views expressed on this show are not necessarily the views of K F a I or its board of directors. Thanks for having me. This is K FAI, 90.3, FM, Minneapolis, and
[email protected]. Stay tuned, take care folks.
