Speaker 1 00:00:53 Welcome to Disability and Progress on Kfa I 90.3 Minneapolis and a i.org, where we bring you insights into ideas about and discussions on disability topics. My name is not Sam Sha on Vacation. Know. This is Aaron Westham Do Doing a special Fill-in show. I am the guy who turns this fine program into a podcast every week. You're welcome. And now at this point, dear listener, you may be wondering why you want, we're hearing some computer text to speech Danger Will Robinson voice talking. I am disabled. Hence why I am here tonight. I am nonverbal. I used to engineer Democracy now on the station every Thursday and Friday, and people would call and ask King, Why is a computer hosting shows now? It's not a computer, it's me, a real dude with attitude. I use an iPad to talk a power wheelchair to get around. I am sure some of you out there know me or know of me at least I get around.
Speaker 1 00:02:10 And also I host the critically acclaimed web only show named Darren's Cavalcade of the mine, K F A I, lets me upload it to their mixed cloud feed. But the easiest way to find it is at mix cloud.com/aaron Hfe from Western dop. I will repeat this information later in the broadcast so you can write it down. But in the meantime, I am going to feature an interview I did with the legendary freeform radio station, WFM Wfmu in New Jersey. They used to do a great documentary style show called In Real Life, hosted by Emily and Kim Zilla. And they did an episode all about disabilities on my suggestion, and they interviewed me. So I am going to feature that tonight. Now, technically, this is a repeat of a repeat. I broadcasted this August of last year, want a documentary about me in my life premiered. And I can put a link to that documentary in the show notes. But last time I aired this, it was full of typos and inaccurate information. So this time around I am editing it so it's more evergreen and more accurate. And we enjoy this here on K F A I and Disability and Progress.
Speaker 2 00:03:35 Welcome to In Real Life, I'm Emily,
Speaker 3 00:03:39 And I am Kim Zilla.
Speaker 2 00:03:41 So
Speaker 3 00:03:42 Yeah, we're here for, uh, installment number two. We're, we're on a serious mode right now.
Speaker 2 00:03:47 Mm-hmm. <affirmative>. Yep. We're on a serious, a little bit of a serious kick. Mm-hmm. <affirmative>. Um, or at least we're trying really hard to suppress our, our giggles on a weekly basis. Um, it's,
Speaker 3 00:03:57 It's for my mother's request.
Speaker 2 00:03:59 Yeah. <laugh>. Um, you
Speaker 3 00:04:01 Laugh too much, Kim. No one's gonna take you seriously.
Speaker 2 00:04:04 Be more 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 W F M u.org/playlist/il. Um, and that one was called The Gays of Our Lives, Get It <laugh>, um, where we talked to three really interesting people that we know, um, who happened to be gay and, um, got their really personal stories. And this week, um, we're talking to, uh, really interesting individuals who also happen to be disabled.
Speaker 3 00:04:48 Perfect, Perfect summary. Emily. Yeah. <laugh> in 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 2 00:05:06 Sadly when you talked yeah, when we talked about doing this series,
Speaker 3 00:05:09 And we talked about every other minority group and every other marginalized group that, um, you know, maybe 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 2 00:05:30 The disenfranchised groups that we're, that we're interviewing.
Speaker 3 00:05:33 So thank you Aaron for that. And we're gonna be actually talking to Aaron, 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, Aaron 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, uh, episodes on wfm u. He's a frequent commenter on many of the W fm U shows and also calls in, and you might recognize him just from his text to speech, um, that he uses kind of like a Stephen, it
Speaker 2 00:06:14 Sounds like Stephen Hawking, like if you
Speaker 3 00:06:16 Only, Only
Speaker 2 00:06:16 Cooler only. Yeah. His is actually, which makes me wonder, like Stephen Hawing has had this for a really long time. You'd think they could get him a, like a cooler sounding voice than that.
Speaker 3 00:06:27 Well, that was our first question with Aaron
Speaker 2 00:06:29 <laugh>. Aaron's, uh, Aaron's voice that he uses is a very announcer, really broadcasty voice. Um,
Speaker 3 00:06:36 And what did he say?
Speaker 2 00:06:38 He to the, he had this request of us,
Speaker 1 00:06:41 Make me look smarter than I am.
Speaker 3 00:06:44 <laugh>, there's Aaron.
Speaker 2 00:06:46 Yeah. Um, although Aaron 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, uh, step all over each other's words, <laugh> and step 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 Erin 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 <laugh>. It was a really,
Speaker 3 00:07:29 It's an exercise in patience, in
Speaker 2 00:07:31 Patience for us, which he pointed out, you just have to be patient and, and
Speaker 3 00:07:36 What did he say to me? We
Speaker 2 00:07:37 Weren't so good at it.
Speaker 1 00:07:38 <laugh> Kim. Just shout up
Speaker 0 00:07:42 <laugh>.
Speaker 2 00:07:43 Yeah. Um,
Speaker 3 00:07:45 And just to preface, I remember us actually talking about our Anna 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 silent moment. Kim
Speaker 2 00:08:00 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, <laugh>, whoops. 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,
Speaker 0 00:08:30 <laugh>.
Speaker 2 00:08:34 Um, so,
Speaker 3 00:08:36 Uh, without further,
Speaker 2 00:08:37 I guess without further ado, we'll let you hear from the man himself.
Speaker 1 00:08:42 The name's Aaron Weston dop, known to FM u Listers as Aaron in Minneapolis. My achievements is living past two weeks and defying the experts, which is not easy to do. I host a podcast. I have my own van, which I can use at any time. I live independently with the staff that I can hire and fire at will. I have been listening to W F M U for 10 years and helping them out financially and also contributing other ways. I helped out to show that used to be in new time slot three years ago called Why y with Andrea Cel Lindsay. I was her entrance slash sensor for her time on her, and now she has it as a great podcast. When I interned for her, she would send me the show early Wednesday morning and I would listen to it and tell her about any curse words she forgot to bleep while she was editing.
Speaker 1 00:09:42 At 2:00 AM I also contributed a few shows when she needed time off. One concerned feminism in country music and one was obscure holiday music aired on Christmas Eve. I also call into shows on here, baffling hosts with my text, a speech set up and trying to be funny. People think I just sit home all day feeling sorry for myself. Well, some people anyways, and the comments board, they ask if I am real. Dave Hill hung up on me the first time he heard, and Tom Sharping, boy, I had fun with him. I just gave him sass. 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 put 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?
Speaker 1 00:10:47 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 walk 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. 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 probably two weeks old. It was a fine just to get me home from the hospital. Then once I did get home, they have to do range of motion exercises on me five times a day.
Speaker 1 00:11:50 That's how I am so independent today, I think. And yes, their life did change. Was it difficult? Yes. Was it necessary considering the alternative? Of course. Now, at this time, my family was living in a small town called Piece and our 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. So we moved when I was one to a suburb of Minneapolis where I got my tracheostomy tube put into my neck. That helps me breathe is after I moved and during the same time I got a feeding tube installed in my stomach. So I stayed in Edina for 25 years until I moved out to my own place here in Hopkins.
Speaker 1 00:12:55 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 lid. It has been great ever since. I communicate a variety of different, and I used an app called Claro Comp Row to communicate with the outside world, who doesn't know finger spelling, her sign language in high school. But all I got from that was a C minus over two years. But I also have been iPad and keyboard mounted on my wheelchair and I call who I need to call using Google Voice and a program called Soundflower Flour.
Speaker 2 00:13:36 We asked Aaron 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 1 00:13:49 I wake up my night nurse, gets me off my vent, which I use at night. We do treatments, shower, get dressed. That takes about an hour. Then I usually go back to bed, then get up, eat, check what's going on online. Then I usually do what needs my attention, mainly making appointments or after being radio shows for exercise. I walk around my kitchen table for 15 to 20 minutes while listening to very os podcasts. I eat lunch a few hours later, do more breathing treatments, nebulizers. I am sure a lot of listeners do that as well. Run rents with my personal care assistant. They drive my van to wherever I want or need to go. Within reason. I go to bed whenever I feel like it. Sometimes I go out to bars, harass 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, Aaron's Cavalcade of the Mind available at mixcloud.com/aaron h and Western Do, I will repeat that later, which is just me playing music I find interesting, just like WFM U the Jays do.
Speaker 2 00:15:16 We also asked Aaron 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 1 00:15:26 All my staffing is covered through something called the Caddy Waiver, which covers services I use. So all my nursing, my personal care assistants, van 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, it got me into the community. The system as if now is very weird, to put it mildly, but at worked when that was passed in 1990. I am not sure of the current laws and the books, but what I do know is this statistic, which is 70% of people with disabilities are unemployed. The hauling entitlement 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 sectionality, every country, everything. We are considered the largest minority in the world. Basically a 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 2 00:16:52 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 Aaron about it, Um, if the people he meets are ever too 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 1 00:17:21 Years ago, my mom got me a bumper sticker from my wheelchair that said, Speak softly. This is a wheelchair, not a hearing aid, which was in response to people thinking, Oh, he's in the wheelchair. He must have issues hearing. So they talk very loudly. There was another bumper sticker that said, Pat my head and I'll break your legs with a picture of a rhino on it. It and my mom wouldn't let me get the one. Oh
Speaker 4 00:17:53 <laugh>.
Speaker 1 00:17:55 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 personal care assistances come and go when I ask them to. If I was on event 24 7, it would be a different story, but I am off during the day.
Speaker 2 00:18:29 We also asked Aaron to tell us a little bit about, uh, 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 1 00:18:47 When I was in the first and second grade, I attended a private school and I had to have a pair of professional with me in the classroom. And sooner or later, the 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 the judge. He talked openly about playing in the sandbox with the judge when they were little and the judge then proceeded to rule 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 at the public school here just because I think it was too much money to switch back to private and that it was not the best because I got the Paris there just to do the work for me when I was a little crap.
Speaker 1 00:19:54 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 than getting me a solid education. So when I attempted to do college, it was not successful. I think because I wasn't allowed to work as hard as other kids in high school. They just wanted me out of there. 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 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? I need this chair, no questions asked. And my man thought the same thing. And luckily my mom is a fireball.
Speaker 1 00:20:54 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 Clay Pigeon tipped me off to your great show. I think the closing thought 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 pharmacy and they didn't have it in stock. And she was at her work at the time and her coworker overheard her rut her the phrase, My son needs X medication. He is coughing up blood. And this coworker just happened to have a son who used this exact medication and he had a few extra doses he didn't use.
Speaker 1 00:21:58 So she offered my mom the rest of the doses, highly illegal, but she heard I had a need and she risked it 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 prayed most of the town came to pray. And I never forgot that ever. I think that group kept me alive. That was me back in 2016 on WFM U in New Jersey. 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 theory of disabilities, how it affects the body and soul. So this interview I am about to play, kind of gets at that talking about spoon theory with another WFM U community member named Rachel who has her own show on the stationed. I think this is from the Same Shall I Was On. Enjoy.
Speaker 6 00:23:13 I'm Rachel, I'm from New Jersey. I have a series of invisible illnesses, um, which is a term that 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. Mm-hmm. <affirmative>. Um, it's interesting, uh, with the invisible illnesses, there's a, 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 cuz 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 of frustrations sitting in this half empty diner, she around all the tables and she grabbed all the spoons and a big fist of spoons and she looked at her friend and said, Everything you do all day takes a spoon.
Speaker 6 00:24:10 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. You only have so many spoons. 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 could do something tomorrow. Um, this is like a, a very, uh, uh, shortened version of this spoon theory. Mm-hmm. <affirmative>, but that's the gist. And, um, so my health story is having invisible illnesses and a deficit of spoons for a very long time. Um, I was born premature. Uh, they thought that I was going to have some health problems or severe, uh, mental deficits, but that happened to not be the case. Um, I lived, they didn't think I was gonna live and I seemed fine.
Speaker 6 00:25:08 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. Mm-hmm. <affirmative>. 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 fascia, essentially <laugh>, um, all your organs. So it all, and it, there's different types of this syndrome. It's alors Danlos syndrome, and some are more vascular, some are more hypermobile. Like, when you see people that can do those circus tricks 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 AORs Dan lows.
Speaker 6 00:26:10 I can't do that stuff. Um, uh, if I could, probably would've been caught earlier. Uh, my family is very kind of suck it up <laugh>, you know, pulled up by bootstraps. Like, You're fine, don't worry about it. Everyone hurts. Everyone has problems. And so I, I honestly didn't think it was as, as weird as it was paired with, uh, a mother who believed in lots of woo, 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.
Speaker 6 00:27:12 Hmm. 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 and they generally just didn't believe me. Um, because it's not a 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 a total Hermione 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 ovaries syndrome. There's like a whole bunch of stuff that I have polycystic ovaries syndrome, which makes your hormones all wonky.
Speaker 6 00:28:07 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. 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 on this. Um, and then, uh, it's been a kind of a steady decline of, of health ever since my right side's, slowly going numb neuropathy, stabbing pains throughout my body. It sound, it feel like, um, ground glass in your bloodstream.
Speaker 6 00:28:53 Um, difficulty keeping jobs, uh, throughout my twenties, uh, keeping jobs solely to get health insurance throughout my twenties instead of pursuing any creative dreams that I had. You know, I always had the, the idea that I had to be, um, secure and, and I told myself to not do the creative stuff. I remember I had this conscious decision that because drawing my right hand doesn't work and my eyes are cross side drawing became difficult. And I told myself, You know what, instead of being upset, instead of making myself cry every time I try 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 mm-hmm. <affirmative>, it's not the kind of thing you can fix. Yeah. So I'm a bit frustrated that I'm spent my twenties and majority of my thirties hunting down something that I wasn't gonna catch.
Speaker 3 00:30:03 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 6 00:30:30 It's hard, uh, especially when, when you already have a deficiency of spoons and you're working at some crap corporate job that takes up most of your spoons. But, you know, but you, 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 doctor's will figure out what's wrong. Hmm. I think I ended up getting myself insurance five separate times and started 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. Hmm. Since I got disability, it's the first time I've been stable in my adult life.
Speaker 6 00:31:21 Even though it's a pitance, 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 <laugh>, 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, the act. Um, I don't, I don't think this has been changed at all. But before the act when I was employed through Samsung, through some crappy computer cafe, I ended up getting fired or I quit, I forget which, and I was on, uh, disability and I could pay Cobra, which is the thing that lets you keep buying your own insurance, which is ridiculous.
Speaker 6 00:32:28 Yeah. 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, not hope that they didn't write it down the last time. Mm-hmm. <affirmative>, 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 a 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 the Keary Institute, and they treat this thing where the back of your brain slides out the hole in the back of your skull and plugs the hole where this re spinal fluid flows into your brain and then down your spinal column.
Speaker 6 00:33:32 It's this, it's supposed to flow kinda 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 Aler Danlos. I didn't even know I had Aler 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 and
Speaker 3 00:33:56 Become your own advocate. Yeah, yeah,
Speaker 6 00:33:58 Yeah. Uh, and I had 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 gonna apply for disability. Yeah.
Speaker 2 00:34:20 How, but how, like validating must that have felt to finally have like, after so long of insisting like, No, there's something wrong. Yeah, no, there's something wrong to have somebody say you qualify for this.
Speaker 6 00:34:35 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. I don't know why.
Speaker 3 00:34:53 How old were you when this was all going through? And how old are you now?
Speaker 6 00:34:58 I am,
Speaker 3 00:35:00 If you don't mind me asking,
Speaker 6 00:35:01 I don't mind you asking. I am, 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 Alist Danlos. Once I finally got Medicare, uh, I was in New York City and I had access to ho to doctors at, um, Cornell and Columbia and 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 gonna be rich people and athletes. So these are gonna be doctors at the top of their field who will actually treat you well.
Speaker 3 00:35:48 And how about medication? I mean, is that, that must be extremely expensive. I mean, are you on multiple medications?
Speaker 6 00:35:56 Who am I, Yeah, I'm always, I'm always, uh, 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 $1,200 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 gonna say no, but it's insane. Especially so much. 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, the nausea and the, the pain aspects. Uh, so I'm paying a thousand dollars a month for weed pills. Right.
Speaker 3 00:36:58 I, I had to interrupt here just to talk about the fact that Rachel came across Martin Scalley on Facebook. And if anyone remembers who Martin Scalley is, he's that pharma executive, that CEO of biotechnology. And, uh, he became kind of infamous by raising the price of DMA Prim and, uh, 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 Scarley.
Speaker 6 00:37:38 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 trolling 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 a, and it was the scariest thing. Cause I'm watching him on Periscope, like, this is crazy. I'm amazed. Look at him talking and he's, and all of a sudden he like looks into the phone like at out of the screen at me and was like, uh, Rachel, Hmm.
Speaker 6 00:38:26 <laugh>. And then I, I up watching him look up my, uh, my Twitter, uh, page and he was like, Huh. Yeah, I, uh, I think we could probably, uh, have a good time. Oh no, <laugh>, oh God, nice. That is not 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 was weird. And I thought to um, ask him the whole reason you said you, you, you'd mentioned before that you had read a, 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. Cuz I thought if I've, if he 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 person on a disability and the financial trap because if I make more than $600, then I'll get kicked off of disability.
Speaker 6 00:39:22 Um, if you make more than, uh, $1,500, something like that, then you get kicked off of Medicaid no matter where the money's coming from. Um, even if it's a gift. Uh, and so I wrote all that up and then asked him about it and was like, Do you have, since you understand how medicine works and you know, the health system works and money clearly cuz 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. Wow. Yeah. Yeah.
Speaker 2 00:39:57 So you're pretty, you're pretty vocal about your, like in the internet world especially, um, 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.
Speaker 6 00:40:15 Um, 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 all rant about it, but it's more about how messed up the system is it, 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 uh, a geneticist to diagnose me is when I felt that
Speaker 3 00:40:38 It's validation Yeah.
Speaker 6 00:40:39 To form a validation. Um, it is, it's interesting. It's like the opposite. Most people from the outside of a, a spoony as you would, uh, 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 like high five is someone like, yes, there
Speaker 3 00:41:02 Might be my not in my,
Speaker 6 00:41:03 Yeah. I can maybe do something about it. Yeah. 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.
Speaker 3 00:41:24 It being like an invisible disability. Like if you feel like there like that there's more judgment, um, from family, friends, uh, professionals, people that don't believe
Speaker 6 00:41:37 You. 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. Yeah. You know, um, I used to, I used to tell myself that it was the eye patch and the cane, uh, that people thought that it was my look and may not actually be for a reason. Yeah. Which is, you know, kind of my goal trying to make a whole cripple chic look like a super villain kind of thing. Makes
Speaker 2 00:42:10 It, it's really working for you. It really, I mean you look great <laugh>, I hope I'm
Speaker 6 00:42:14 Gonna do it. I'm gonna 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 cuz you don't get a lot of social time. And so since you're overcompensating you're gonna look, you know, hyper and effervescent and you're gonna be extra Boppy cuz like you're a little bit off kilter because you're not used to being around people. So maybe a little high strung, but like, but also you're like, Yeah, I'm out of the house and like I'm wearing outside clothes and uh, yeah. Did I remember how to do makeup? I has been so long and, and people see that and even more so don't think that you're really sick. Like really is she really legit? Like people have said that to me, like Yeah, so and so is asking you like she really for real cuz she seems fine
Speaker 2 00:43:03 And they're seeing you when your medication is working and you're able to get out of the house Yeah. And be when you're feeling up to being out, you're they're so they're seeing you at your best. Yes. Because that's when you're going out is when you're at your best it 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.
Speaker 6 00:43:26 And it it, it works against you in doctor's offices too. Cause this has been so long and I'm so matter of fact, I think a lot of time 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 'em for the first time. Cuz 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 side and I have right-sided uh, arm pain. Um, but I had a purple mohawk and was wearing 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, a large part of that was because I was in constant pain self
Speaker 3 00:44:24 Medication.
Speaker 6 00:44:24 It was totally self medication. That was, I 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.
Speaker 3 00:44:37 Yeah. Yeah. Another question I had is just about the stigma of being on disability. You're a young white female. Yeah. That's on disability. So you're kind of going into this world seeing how this world is treating a pretty large segment of the population.
Speaker 6 00:45:01 I think Chris Rock did a bit about this about when 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 got her, uh, 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, cuz I have a rare thing that needs specialists. Um, you're talking about fancy old white manhattanite, like people in their sixties and seventies that go 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 amount of care and, and an open mind to some herbal supplements. And it's not a, it's not such a a machine of just spitting out some, I'm gonna write you a prescription then come back in three months. Like some sort of,
Speaker 2 00:46:19 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, the change in administration following the recent election?
Speaker 6 00:46:34 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, it's a real, it was a, it was a real reaction of like honest mortal fear. Cause
Speaker 6 00:46:51 Being on Medicare, Paul Ryan wants to get rid of it and he's had to 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 not going to happen. You know, like we can protest, but for four years they're going to have complaint control and I, I don't really see that there's gonna be a way to fight it. So I'm afraid of Medicare being privatized. That would be horrible. They wanna, 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, Medicaid is mostly straight up Medicaid and if a doctor takes Medicaid, you just have to, you just have to have Medicaid. It's, it's upsetting.
Speaker 6 00:47:46 Especially since it's the same people that wanna privatize it, also wanna drug test people. Like, so you, you can't control from both directions, you know, like if, if the state ran it and paid for everything, then maybe you would have a look to stand on to say that. Like, I wanna drug test people that are on Medicaid. If you are actually giving them like enough money to live on and it was actually like a fun time then maybe I could understand your rationale. But it, 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 <laugh>, you
Speaker 3 00:48:18 Know? Right. Yeah. Yeah. Yeah. I mean, I mean, you're a really smart person and you pretty much have learned this 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, you know, to figure out the system without someone else's assistance or an advocate.
Speaker 6 00:48:41 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. I think it's, it depends on each what state. It's around $1,500. People who are most in need don't seem to have any voice at all. That's a, 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 gonna 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, the all the disenfranchised are becoming, uh, are being put in danger because of this. And you know, you have the lgbtq q sometimes I sometimes a and like, you know, every color and every ethnicity and like disabled will never be on that list. It's, it's, it's, it's interesting how little it's mentioned. Yeah.
Speaker 3 00:49:59 I I was gonna just talk about like the fact that it's become more acceptable to kind of talk about those personal things. I think even a generation ago, like you kept your business to yourself. Yes. And that's where I think it's great that you and technology's caught up that people can communicate more and talk about their own personal struggles and make, you're
Speaker 6 00:50:21 Not able to get out of the house necessarily.
Speaker 3 00:50:23 You know? Yeah. Where, you know, if if Facebook wasn't around you would be Rachel. Right. In my world and I wouldn't know what's going on. Mm-hmm. <affirmative>. And I think again, the parallel between all of these stories is just learning who that one outta 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 then you're gonna be more aware of what you're voting for.
Speaker 6 00:50:52 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,
Speaker 3 00:51:02 I appreciate you giving us some of your spoons, <laugh>. Yeah,
Speaker 6 00:51:07 Of course.
Speaker 3 00:51:08 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
Speaker 6 00:51:22 So. You
Speaker 3 00:51:22 Know? Yeah.
Speaker 6 00:51:23 Cuz 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 social
Speaker 3 00:51:38 Element,
Speaker 6 00:51:38 Someone to smile to every day, like say good morning to, that's a huge thing. It's, it's very isolating cuz 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 2 00:51:54 So speaking of the, uh, you know, social media and the online community, acting is a really powerful and important forum for people with disabilities to be able to connect to one another and not feel so alone. Um, our message board is on fire tonight. Um,
Speaker 3 00:52:12 You mean like Girls On Fire?
Speaker 2 00:52:13 It's like Girls on Fire <laugh>. Um,
Speaker 3 00:52:17 Yeah. Yeah. I mean there's a pretty strong representation of other people that also have disabilities that are talking, uh, 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 w fmu and yeah, this really is, I feel like a, like technology really is catching up with people that do feel isolated and they're 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.
Speaker 2 00:53:02 Yeah. 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 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 Yeah. Distancing me from other people. And it seems like when they first came about, they served as like an anti, uh, humanizing device mm-hmm. <affirmative>. 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
Speaker 3 00:53:44 And microphones
Speaker 2 00:53:45 Too. And microphones Absolutely. And microphones. Yeah. Um, and, and ways to connect to one another. Yeah. Um, so that, you know, as Rachel said, it doesn't feel quite so lonely and isolating.
Speaker 3 00:53:56 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 opportunities to be, you know, 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. Mm-hmm. <affirmative>,
Speaker 1 00:54:24 That was an episode from 2016 of In Real Life, a show that I really loved, that Adom Wfmu. But sadly, it's no longer being made. And what Emily and Kim Zi were saying about finding you a tribe bomb line. It's true. It's how I got connected and involved with W F M U. I called into their shows and posts on their comment BTS all the time. It's a great station and inspiration to me and to many community radio stations around the world. But enough about that, Sam and Charlene last week made me realize how cool disability and progresses. One week you may hear from Richard Turner, a world renowned blind card mechanic, basically a card magician. The next week you may hear a discussion on comfortable housing. This show covers all the bases and it's an honor to be a part of this show every week.
Speaker 1 00:55:30 I try to get the show up in podcast form within an hour of the broadcast ending. So I am happy to do this week after week thanks to those who supported this amazing stationed during our Fall Member Drive. You can hear from me on my own web only show Aaron's Cavalcade of the Mind. You can find a lot of shows on our mixed cloud.com/aaron/western Do thoughts. Aa, r o n Hyman, w e has in Eric, S as in Sam, T as in Tim, E as in Eric, M as in Nancy, D as in Doug, O as in Olive are as in Rachel and P as in Paul. This has been Aaron Weston DOP 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 sport of directors. Thanks for having me. This is k a i 90.3 FM Minneapolis in long
[email protected]. Stay tuned. Fresh fruit is up. Next. Take care folks.
