Latest / To All the Men I've Tolerated Before / Fighting for Disability Aid

Transcript

Fighting for Disability Aid · To All the Men I've Tolerated Before

0:21
Speaker 1: Hey, Tolerators, this is to all the men I've tolerated
0:23
Speaker 1: before with Navley Katona, your weekly look at everyday misogyny.
0:28
Speaker 1: Today is going to be a very special episode because
0:30
Speaker 1: we get to check in with one of our Team
0:33
Speaker 1: Tolerator members and dear friend, Ellen Moore. Ellen, you will
0:37
Speaker 1: recognize for her advocacy work for sexuality, her advocacy work
0:43
Speaker 1: for people who are disabled and dealing with chronic illness.
0:47
Speaker 1: You'll also recognize her from a few episodes on here
0:51
Speaker 1: dealing with sexuality, hormonal birth control, remember that one. That
0:55
Speaker 1: one was way back and the Light. So I'm gonna
0:58
Speaker 1: let Ellen take it away and give us a little
1:01
Speaker 1: bit of an update on what's been going with her,
1:04
Speaker 1: and then we'll discuss all the nasty ways that misogyny
1:07
Speaker 1: has affected all of the things that she's been going through. Ellen,
1:12
Speaker 1: welcome back.
1:13
Speaker 2: Thank you so much. I'm so happy to be here.
1:16
Speaker 2: It's been such a long time, so much has changed.
1:18
Speaker 2: I feel like a different person. It feels like a
1:21
Speaker 2: lifetime ago. For those who maybe listen to previous episodes.
1:24
Speaker 2: My name is Ellen Moore. I'm twenty seven. I'm a
1:27
Speaker 2: disabled activist. I live with more than ten complex and
1:30
Speaker 2: predominantly invisible and for the overwhelming majority incurable conditions. I
1:34
Speaker 2: am currently crowdfunding for survival while fighting numerous legal battles
1:38
Speaker 2: after having been failed drastically by the Dutch government. This
1:42
Speaker 2: forced me to open up about my story on social media,
1:44
Speaker 2: which led me here today with you. I'm so happy
1:47
Speaker 2: to be back for a shit reason, but hey, so
1:50
Speaker 2: happy to be back.
1:51
Speaker 1: To catch everyone up. What are some of the big
1:56
Speaker 1: ways your life has changed since the last time we talk.
2:00
Speaker 1: Because it's not just diagnosis, You've had to have a
2:03
Speaker 1: complete lifestyle overhaul. First, actually got an amazing haircut, but
2:08
Speaker 1: that's just like one of them any ways.
2:12
Speaker 2: Yeah, so many things have changed. Honestly, so, I've always
2:16
Speaker 2: been disabled, but for a very long time, I was
2:18
Speaker 2: completely unaware of the overwhelming majority of my disabilities. I
2:21
Speaker 2: was aware of the way they were impacting me. I
2:23
Speaker 2: was aware of the symptoms. I was aware of some
2:26
Speaker 2: of the excruciating pains, but I did not have the
2:29
Speaker 2: right terms for them for a very long time. Today,
2:32
Speaker 2: I know that I have two different brain diseases, chronic
2:35
Speaker 2: cluster headaches and chronic migraines. For those who don't know,
2:38
Speaker 2: cluster headaches They are one of the absolute worst physical
2:40
Speaker 2: pains known to men. They are headaches that are a
2:44
Speaker 2: brain disease, not just an averageache headache that you get
2:47
Speaker 2: after a hangover. They are more painful than gunshot stab
2:51
Speaker 2: wounds or unmedicated childbirth. So that has been incredibly impactful.
2:55
Speaker 2: I've suffered from them since I was fourteen, but it
2:58
Speaker 2: took more than a decade to get the diagnosis. And
3:00
Speaker 2: that is the story for the overwhelming majority of the
3:03
Speaker 2: conditions that I'm diagnosed with and living with today. Because
3:06
Speaker 2: even though I'm only diagnosed now, I knew that I
3:10
Speaker 2: had these things, and I knew that I had debilitating symptoms,
3:13
Speaker 2: I just didn't know what the what the word was
3:16
Speaker 2: with the over like the what them the official medical
3:20
Speaker 2: term was. And yeah, now I know that not just
3:24
Speaker 2: the product cluster headaches and migraines, there's also enemeytriosis and
3:27
Speaker 2: I don't know myosis at play, as well as postural
3:30
Speaker 2: orthostatic techycardia syndrome, hypermobile ailer stumbles. Then we have the
3:34
Speaker 2: ADHD and the autism complex PTSD, pm t D, MECFS,
3:39
Speaker 2: long COVID depression, fibromyalgia, irblebiwel syndrome that makes us fifteen.
3:44
Speaker 2: So and then there's still some suspicions. So life's looking
3:48
Speaker 2: a lot different than it looks a couple of years ago.
3:50
Speaker 1: Yeah, I because you've also had to change your entire brand,
3:57
Speaker 1: basically absolutely. And I think and I think when I
4:04
Speaker 1: was like on the outside looking in at your new reality,
4:09
Speaker 1: I think one of the things, as you were talking
4:12
Speaker 1: through it about why it would take so long for
4:15
Speaker 1: a diagnosis is mostly medical neglect worldwide that we experience
4:21
Speaker 1: as women, but also like you and I as creatives
4:25
Speaker 1: have been soap and as women have been conditioned for
4:29
Speaker 1: so long to just like ignore any pain or suffering
4:33
Speaker 1: that we're experiencing, to just keep going and get shit
4:37
Speaker 1: done and to be and we're single women, we're unmarried women,
4:43
Speaker 1: so it's another layer of pressure to that. It's like, well,
4:47
Speaker 1: no one's coming to bring me tail and all when
4:50
Speaker 1: I'm down or whatever, I just have to keep going.
4:54
Speaker 2: Yeah, exactly. I think I lived on an autopilot for the
4:57
Speaker 2: overwhelming majority of the past decade. Years ago this year
5:01
Speaker 2: I ran away from home facing domestic violence and abuse.
5:04
Speaker 2: And this will this year will mark the ten year
5:08
Speaker 2: the first decade since then, and in order to be
5:12
Speaker 2: able to survive, to keep a roof over my head,
5:14
Speaker 2: to keep food on the table, for the overwhelming majority,
5:16
Speaker 2: I was forced to work my literal ass off in
5:19
Speaker 2: order to you know, not become homeless, not starve to death.
5:23
Speaker 2: And so it's a massive privilege to be able to
5:25
Speaker 2: rest when you are disabled. It's a massive privilege to
5:28
Speaker 2: be able to access help when you're disabled. Right now,
5:31
Speaker 2: I do not have a care team. I'm taking care
5:34
Speaker 2: of everything myself through the crowdfunding that I'm currently campaigning
5:38
Speaker 2: for on social media. I would never have opened up
5:41
Speaker 2: about my story to the degree I am today if
5:43
Speaker 2: it weren't for the financial need behind it. It's honestly
5:49
Speaker 2: for survival, not for fundzise, because I don't have the
5:52
Speaker 2: energy to be recording all this content. But there's no
5:55
Speaker 2: other option because I filed for disability eight years ago,
5:59
Speaker 2: and I've been fine legal battles surrounding that for many
6:02
Speaker 2: many years, many many moons, and it's going to take
6:05
Speaker 2: till at least the spring of twenty twenty seven for
6:07
Speaker 2: me to even make it to court with the case
6:09
Speaker 2: surrounding my disability eight so I will have to crowdfund
6:12
Speaker 2: for survival until at least the spring or summer of
6:16
Speaker 2: twenty twenty seven.
6:17
Speaker 1: And what the fuck? What the fuck? I mean it
6:22
Speaker 1: because I think that like a lot of privileged people,
6:25
Speaker 1: live under this delusion that we are all taken care
6:31
Speaker 1: of in some way, or that we have to earn
6:35
Speaker 1: the care. Like today, I got to notice about legislation
6:39
Speaker 1: that was changing in my state where people who were
6:43
Speaker 1: out of work and currently getting free healthcare we now
6:48
Speaker 1: have to start earning their free healthcare by working. And
6:53
Speaker 1: I was like, well, that's I was like, that's insane
6:57
Speaker 1: because if we were working, we have money to pay
7:02
Speaker 1: for health care.
7:04
Speaker 2: The system is just so broken and capitalism is making
7:07
Speaker 2: everything worse. It's not treating us as individuals, but as
7:10
Speaker 2: people do need to function within this this system of
7:13
Speaker 2: productivity in order to be worth anything.
7:15
Speaker 1: Right and then and then I continued dreaming, and it
7:19
Speaker 1: was like, it has to be you have to prove
7:22
Speaker 1: that you've been working or doing labor for eighty hours
7:27
Speaker 1: a month, and you also so that's part time, and
7:34
Speaker 1: then you also have to but it could be volunteer
7:37
Speaker 1: work and number one in the air, I have been
7:42
Speaker 1: trying to look for volunteer work to make connections and
7:46
Speaker 1: things like that. But I am basically in a Christian
7:51
Speaker 1: nationalist state, and everywhere that I go to uh volunteer,
7:57
Speaker 1: I'm like, okay, so this is a woman and shelter.
8:00
Speaker 1: Do you believe in women actually getting healthcare in the
8:04
Speaker 1: form of abortion or STI screenings or like, how what's
8:10
Speaker 1: our scants on queer women are we doing? Like what's that?
8:15
Speaker 1: What's that therapy called where they try to make us straight?
8:20
Speaker 1: They conversion therapy? Like do I have to meet with
8:24
Speaker 1: a with a pastor, like a weird youth group guy
8:27
Speaker 1: before I even get to volunteer here and talk to
8:29
Speaker 1: young women? Like Also, it's so counterproductive too, because if
8:35
Speaker 1: I'm and again like, volunteer work is amazing, But if
8:38
Speaker 1: I'm putting eighty hours a month towards volunteering just to
8:43
Speaker 1: earn health care, that's eighty hours a month. I'm not
8:48
Speaker 1: looking for stable employment. I'm not starting or facilitating or
8:54
Speaker 1: fostering my own business or my own brand. I'm not writing,
8:59
Speaker 1: I'm not seeking out internships or screenwriting contests or whatever.
9:05
Speaker 1: And it's just to make sure that my antidepressant stays free.
9:09
Speaker 1: And it's ridiculous.
9:12
Speaker 2: It's honestly the wildest thing ever. And I just like
9:14
Speaker 2: said to you off before we started recording, I feel
9:17
Speaker 2: like the States is more and more and more becoming
9:19
Speaker 2: a sort of a reenactment of an episode of Black Mirror.
9:23
Speaker 2: And I think that's also why a lot of people
9:25
Speaker 2: assume that I'm from the States, which I'm not. By
9:27
Speaker 2: the way, I'm Dutch. I'm from the Netherlands and I'm
9:29
Speaker 2: based here. I've always been here. I'm born here. I'm Dutch,
9:32
Speaker 2: even nater Loans. For the people thinking I only speak
9:35
Speaker 2: one language and that is American English, I'm not. And
9:39
Speaker 2: I get it because in America everything is such a
9:41
Speaker 2: fucking shit show when it comes to health and disability age.
9:44
Speaker 2: But at this point, all over the globe is not.
9:47
Speaker 1: Great, right, And I was thinking about, you know, we're
9:53
Speaker 1: constantly nigkeling and dining people's privilege to just be here,
10:01
Speaker 1: present on the planet. And it's like you guys are
10:04
Speaker 1: acting like I sat on a cloud and begged to
10:07
Speaker 1: be born, like I too, am only here because of
10:12
Speaker 1: accident and chance.
10:15
Speaker 2: I mean, if I could have chosen for my parents
10:17
Speaker 2: to wear a condom, I would have, but that was
10:20
Speaker 2: not to me. I was not in the room. I
10:22
Speaker 2: was a little but I was not.
10:24
Speaker 1: No, I wasn't. And then I have been, you know,
10:30
Speaker 1: in the discourse of what it means to be living
10:33
Speaker 1: under a matriarchy instead of a patriarchy, because a lot
10:36
Speaker 1: of people are under the assumption that if you were
10:41
Speaker 1: living under matriarchy, it would just be us making things
10:45
Speaker 1: bad for men, as like retribution. And while I am
10:50
Speaker 1: patty enough to be like, I don't know, put them
10:52
Speaker 1: in a pit until they can behave I also realized
10:56
Speaker 1: that all of the ancient cultures that had women at
10:59
Speaker 1: the center of their spiritual practices, their communities, the politics
11:05
Speaker 1: within their villages, and they had these village mindsets, they
11:10
Speaker 1: put children in the future ahead of any personal games
11:18
Speaker 1: or goals that they might have. And when you're thinking
11:21
Speaker 1: of the future and you're thinking of actual children, what
11:25
Speaker 1: ends up happening is you end up thinking in ways
11:28
Speaker 1: that benefit all of us, because it's all about longevity
11:33
Speaker 1: and not just hoarding resources so you can be top dog.
11:39
Speaker 2: Absolutely, it should be common education.
11:44
Speaker 1: Common education. Why did I have to spend seventy dollars
11:48
Speaker 1: on a book that's out of print to be like, well,
11:50
Speaker 1: women used to run everything, and you know what, we
11:53
Speaker 1: had clean air, just saying and it's it's just so
12:01
Speaker 1: ridiculous at this point that now we have an overwhelming
12:08
Speaker 1: I don't know what it's like in the Netherlands, but
12:11
Speaker 1: over here we have an overwhelming majority, clearly who are
12:16
Speaker 1: just voting or making decisions that because they know they
12:21
Speaker 1: won't help anyone out, they also don't care if they
12:24
Speaker 1: get help. It's like any one of us could be
12:27
Speaker 1: disabled in the blink of an eye tomorrow, through an accident,
12:33
Speaker 1: through an illness, through anything, and everyone is so worried
12:40
Speaker 1: that they might have to scrape off twenty dollars off
12:43
Speaker 1: of their paycheck, and they're like, but I need my
12:46
Speaker 1: coffee every day, so I don't care if one day
12:49
Speaker 1: I might also be out of work due to prolonged illness.
12:56
Speaker 2: Absolutely, And the thing that people just kind of brush
12:59
Speaker 2: over is that disability is very normal. It's not abnormal
13:04
Speaker 2: at all. It is very common. Many people become disabled
13:07
Speaker 2: at some point in their life, whether temporary through an
13:10
Speaker 2: accident like you said, or permanently, and most people will
13:14
Speaker 2: end up either will end up disabled for the simple
13:18
Speaker 2: reason that by the end of your life, you may
13:21
Speaker 2: develop dementia or you may become less mobile that those
13:24
Speaker 2: are also forms of disabilities, and ADHD and autism are
13:30
Speaker 2: also types of disabilities. And not all disabilities are the same,
13:34
Speaker 2: not all disabilities are visible. But you will very likely
13:37
Speaker 2: at some point in your life become disabled, whether that
13:40
Speaker 2: is temporary or for the rest of your life.
13:43
Speaker 1: Yeah, and we also, at least over here, we only
13:49
Speaker 1: classify disabilities and like group them based on your ability
13:56
Speaker 1: to work. So if I have an autism diagnosed, they go, well,
14:02
Speaker 1: you're still a sound body, do some sort of labor job.
14:07
Speaker 1: But if I have an autism diagnosis, but I also
14:09
Speaker 1: went to school for a business degree and I'm in
14:13
Speaker 1: an office, I'm not guaranteed any sort of empathy or
14:18
Speaker 1: understanding about how my brain functions socially compared to my
14:24
Speaker 1: other co workers. Because in America has had like if
14:30
Speaker 1: you could work, If you can work, you should work,
14:32
Speaker 1: and you should do it to the best over the
14:35
Speaker 1: best of your ability, and you should be serving the
14:38
Speaker 1: capitalistic gods.
14:42
Speaker 2: The overwhelming majority of workplaces are not accessible at all.
14:47
Speaker 2: Accommodations are at some places, perhaps in some workplaces may
14:52
Speaker 2: be accessible, but the overwhelming majority are inaccessible. And adapting
14:58
Speaker 2: work to a degree where or you could function as
15:00
Speaker 2: the disabled people is often near impossible in the system
15:05
Speaker 2: that we currently function in.
15:07
Speaker 1: Well, because also over here we have at most sometimes
15:13
Speaker 1: we either have to earn our time off hourly, like
15:17
Speaker 1: it's based on like for every eight hours, I get
15:20
Speaker 1: fifteen minutes of time off added to my paycheck or whatever,
15:24
Speaker 1: and we have to bang that, or we're given a
15:29
Speaker 1: bit a set number of off days and it's like twelve.
15:35
Speaker 2: Which is such a bizarre idea because the more hours
15:37
Speaker 2: off you give, the more likely people are to not
15:40
Speaker 2: actually use all those times all that time off, and
15:42
Speaker 2: the more likely there are to become more productive. It's
15:45
Speaker 2: so counterintuitive to put people in this incredibly restrictive system
15:50
Speaker 2: where you've got to function within the set amount of
15:53
Speaker 2: hours when the mass of people don't. They don't. Some do, sure,
15:57
Speaker 2: but the mass don't benefit from that.
16:01
Speaker 1: And then you layer on top of that that we
16:03
Speaker 1: have also created social stigma around disability too, and there's
16:10
Speaker 1: not there's not a lot of communal respect for our
16:15
Speaker 1: citizens and our peers that have disabilities, and our culture
16:21
Speaker 1: always puts people who are disabled on the defense to
16:26
Speaker 1: have to defend their use of a mobility aid, or
16:29
Speaker 1: their need for several breaks throughout the day, which, by
16:33
Speaker 1: the way, like if you smoke cigarettes, you get as
16:36
Speaker 1: many breaks as you want. But if you have cluster
16:39
Speaker 1: headaches all of a sudden, can go fuck yourself. You
16:42
Speaker 1: can go fuck yourself. Maybe you should have tried smoking.
16:47
Speaker 2: Yeah, I mean, yeah, I no, literally that.
16:52
Speaker 1: It's I I yearn for our society to start carry
17:01
Speaker 1: and empathize with people, but I don't know what it's
17:04
Speaker 1: going to take.
17:07
Speaker 2: I think a lot of people like me just not
17:09
Speaker 2: shutting up. I think it's so important that disabled people
17:13
Speaker 2: keep speaking up, but it's truly and honestly fucked because
17:17
Speaker 2: why should that responsibility lay in the hands of people
17:20
Speaker 2: who already live with disabilities and all the ablest repercussions
17:23
Speaker 2: that come with that. In society, It should honestly be
17:26
Speaker 2: the able body people who speak up for us disabled people.
17:29
Speaker 2: But when we get to that point, god knows. At
17:32
Speaker 2: this point, I hope that just like white people are
17:37
Speaker 2: finally starting to realize that racism is a big fucking
17:39
Speaker 2: issue and that we need to do our research when
17:42
Speaker 2: it comes to white privilege, white fragility. I hope that
17:45
Speaker 2: at some point it. Someday in the future something similar
17:49
Speaker 2: will start rising for ableism, and I feel like it's
17:52
Speaker 2: shifting with sexism, although there's a very conservative wave going
17:56
Speaker 2: around everywhere. I just hope that at some point all
17:59
Speaker 2: these isms, whether racism, sexism, ableism, all of those isms,
18:04
Speaker 2: I just need them to be gone. I just need
18:06
Speaker 2: them to be gone. All we all benefit from that.
18:09
Speaker 1: Well, because unfortunately, even if you are seeking care for
18:14
Speaker 1: whatever is going on with you health wise, you still
18:17
Speaker 1: have to deal with things like racism. We know the
18:21
Speaker 1: birth mortality rates in black women compared to white women.
18:26
Speaker 1: You still have to think deal with things like misogyny.
18:29
Speaker 1: We know that there are a lot of doctors out there.
18:32
Speaker 1: It used to be taught in medical school that like, oh,
18:36
Speaker 1: women just go through pain and that's normal because their
18:40
Speaker 1: hormones are weird. Now we never got past their hormones
18:44
Speaker 1: are weird. We stayed right there and therefore their life
18:50
Speaker 1: is pain. So you get a lot of doctors who
18:54
Speaker 1: are just like, I don't know, lose weight, I don't know,
18:57
Speaker 1: you're a lady, take a nap, like if you're in pain.
19:00
Speaker 1: There's so many of these underlying systems like misogyny and
19:06
Speaker 1: I'm going to kick it back to a really old
19:08
Speaker 1: episode just because I saw him this past weekend when
19:11
Speaker 1: I had my friend Curvin on to talk about misogyny
19:17
Speaker 1: and accessibility within designing board games. He asked me, do
19:23
Speaker 1: you know what the number one account of accommodation for
19:27
Speaker 1: board game design is currently? And I said no, And
19:32
Speaker 1: he said it's making sure that that game is accessible
19:36
Speaker 1: to people who are color blind and I went, oh,
19:40
Speaker 1: I go that makes sense because like board games have
19:42
Speaker 1: different cards, different rules based on different colored squares whatever.
19:46
Speaker 1: And he goes, do you know who the majority of
19:48
Speaker 1: people are who suffer colorblindness? And I went no, and
19:54
Speaker 1: he was like, white dudes. So still at the end
19:59
Speaker 1: they were like, and see, we're accommodating, we're being inclusive,
20:04
Speaker 1: but still with only within white male communities.
20:08
Speaker 2: Right, wow, just wow wow.
20:14
Speaker 1: Do you want to talk about what your experience has
20:17
Speaker 1: been like trying to take your case to court about
20:23
Speaker 1: receiving disability?
20:26
Speaker 2: Yes? Absolutely. When I applied for disability AID, I was
20:33
Speaker 2: invited to have like a so called conversation on location,
20:36
Speaker 2: and I had a conversation that lasted less than fifteen minutes,
20:40
Speaker 2: in which the it boiled down to some of the
20:44
Speaker 2: following statements. They told me, you are able to wipe
20:48
Speaker 2: your own ass, and for that reason, you are not
20:50
Speaker 2: entitled to disability.
20:51
Speaker 1: Eight.
20:52
Speaker 2: You are able to speak in full sentences, and for
20:54
Speaker 2: that reason, autism is not a reason to get disability.
20:57
Speaker 1: Eight.
20:57
Speaker 2: You are able to screw a cap on a toothpaste bottle,
21:01
Speaker 2: and for that reason you are not entitled to disability aid.
21:04
Speaker 2: You speak several languages, and you've gone to university, and
21:06
Speaker 2: for that reason you were not entitled to disability aid.
21:08
Speaker 2: But when you look at the actual law, that is
21:11
Speaker 2: not how the law works. And these are things that
21:13
Speaker 2: are just blatantly illegal to handle the way they've been handled. Next,
21:18
Speaker 2: I saw a doctor who declared me unfit for work,
21:23
Speaker 2: who has declared me unfit for work since twenty twenty three,
21:26
Speaker 2: and who has also said you will never be able
21:28
Speaker 2: to work again in your life ever, based on the
21:31
Speaker 2: conditions that you have. And then they said, but you
21:35
Speaker 2: know what, We're going to decline your disability aid application anyways,
21:38
Speaker 2: because and then there are some things that I cannot
21:41
Speaker 2: get into too much detail about due to the ongoing
21:43
Speaker 2: nature of these legal cases. But trust me when I
21:46
Speaker 2: say it was absolute bull and so then I appealed,
21:50
Speaker 2: and then the same organization that declined my first request,
21:55
Speaker 2: that same organization had to look at their own like
21:59
Speaker 2: actions and they decided they didn't do anything wrong, which duh,
22:04
Speaker 2: because it's the like their own work. So when you
22:09
Speaker 2: then lose your appeal, you finally get taken out of
22:12
Speaker 2: that actual organization that is responsible for disability benefits in
22:16
Speaker 2: the Netherlands, and then you take it to court. And
22:20
Speaker 2: so that is what we're waiting for right now. But
22:22
Speaker 2: the reason it's taking so incredibly long to even take
22:25
Speaker 2: it to court is because this organization focks things up
22:27
Speaker 2: on such a massive scale that there are hundreds of
22:31
Speaker 2: people before me who are also suing them, who are
22:34
Speaker 2: also taking it to court, who are also forced to
22:36
Speaker 2: let it get to this point. And those people all
22:39
Speaker 2: are all in front of me. I've been put on
22:40
Speaker 2: a stack since several months ago, and it's a matter
22:44
Speaker 2: of waiting until they've all suit them.
22:48
Speaker 1: I can't believe that they try to make you just
22:50
Speaker 1: do a bunch of tricks and then we're like, no,
22:53
Speaker 1: stop trying to get free money.
22:55
Speaker 2: Mm hmm. It's the most these are our thing I've
23:00
Speaker 2: ever heard, because I was always raised in this country,
23:03
Speaker 2: told that we live in a healthcare country, we live
23:07
Speaker 2: in a country where disability rights are protected. We live
23:11
Speaker 2: in a country where you can't get the easiest disability
23:14
Speaker 2: eight in the world. And when I applied, tell let
23:18
Speaker 2: me tell you, I was told to go fuck myself
23:21
Speaker 2: several times, whether literally or not.
23:24
Speaker 1: I can't believe a doctor could write out an entire
23:30
Speaker 1: note and be like unfit for work and you take
23:35
Speaker 1: it to the disability office to be like, I have
23:38
Speaker 1: my paperwork it says I am unfit for work, and
23:41
Speaker 1: they're like mm.
23:43
Speaker 2: And it was their own doctor. It was a doctor
23:45
Speaker 2: working for that own company. So the company itself, their
23:48
Speaker 2: doctor said.
23:48
Speaker 1: It, that's ridiculous.
23:51
Speaker 2: Yeah, And so in both the first file for disability
23:55
Speaker 2: eight and the appeal, they just didn't stick to the
23:58
Speaker 2: Dutch law.
23:59
Speaker 1: Well, and because we talk about this a lot over
24:02
Speaker 1: here too in American culture, about how when people close
24:06
Speaker 1: their eyes and imagine a disabled person, they truly only
24:10
Speaker 1: think of cognitive disability that is visible, like something like
24:15
Speaker 1: down syndrome, or a mobility disability that requires a wheelchair,
24:21
Speaker 1: and then that's it. That's as far as inclusion has
24:26
Speaker 1: ever gone in our media and things when it comes
24:29
Speaker 1: to what people experience as a privileged, able bodied person.
24:36
Speaker 1: So when it comes to invisible disabilities, I do feel
24:40
Speaker 1: like people get the short end of the stick because
24:43
Speaker 1: it's always like, we'll prove it. I don't know.
24:47
Speaker 2: Which is so wild because the overwhelming majority of people
24:49
Speaker 2: with disabilities have invisible disabilities, and even within invisible disabilities,
24:55
Speaker 2: most of them aren't actually invisible. They're just invisible to
24:57
Speaker 2: an untrained eye. For example, cluster headache are one of
25:00
Speaker 2: the most visible types of headaches there are, but only
25:03
Speaker 2: to a trained eye. Most people would not realize that
25:06
Speaker 2: my eye hanging slightly more is a cluster headache symptom.
25:09
Speaker 2: Most people would not realize that my running nose is
25:11
Speaker 2: a cluster headache symptom. Most people would think, oh, you
25:14
Speaker 2: just have a red eye or something. When it comes
25:17
Speaker 2: to endo, and I don't know, but it took more
25:18
Speaker 2: than ten doctors until a specialized kind ofcologist looked at
25:21
Speaker 2: it and was like, oh, not invisible at all. And
25:24
Speaker 2: so with pots also, sure, it's not visible from the outside,
25:28
Speaker 2: but when I pass out on the floor, it's visible,
25:30
Speaker 2: and when you look at my heart rate monitor it's visible,
25:33
Speaker 2: and my hypermobile alors dundlews may not be visible to
25:35
Speaker 2: an untrained eye, but if you look at these incredibly
25:37
Speaker 2: lanky arms, and if you look at all the ways
25:39
Speaker 2: my fingers bend that they're not supposed to go, you're
25:41
Speaker 2: gonna know.
25:43
Speaker 1: Yeah, And I'm just irritated now.
25:51
Speaker 2: It's so frustrating, honestly. I mean, it took until nineteen
25:55
Speaker 2: ninety three for women to even be included in medical research,
25:58
Speaker 2: so no wonder that less than third years later, shit
26:01
Speaker 2: hasn't improved for women. And when you look at including
26:04
Speaker 2: disabled people in studies, like that's not even a marker.
26:06
Speaker 2: When you look at including people of color in medical studies,
26:10
Speaker 2: also not even a marker. And there is such a
26:14
Speaker 2: long way to go. And I think that many people
26:17
Speaker 2: who have never been faced with the disability or a
26:20
Speaker 2: chronic illness think, oh, it's impossible to have so many
26:23
Speaker 2: different conditions, when in reality, the comorbidity roulette, as I
26:27
Speaker 2: like to call it, is so fucking real.
26:29
Speaker 1: And you know what, also, when it comes to stigmas
26:34
Speaker 1: against people who are disabled, I was asked over this
26:39
Speaker 1: weekend just because of like one of the peculiar or
26:43
Speaker 1: things I said, and or behave. Someone who was sharing
26:49
Speaker 1: our airbnb with me said, have you been diagnosed with ADHD?
26:54
Speaker 1: Have you ever been like tested? And I was like, well,
26:58
Speaker 1: TikTok diagnosed with ADHD. Unfortunately, when I was a child
27:04
Speaker 1: in elementary school, they diagnosed me as a highability kid.
27:09
Speaker 1: So oh, no one was ever going to help me
27:13
Speaker 1: out from there on out. And I think that's it too.
27:17
Speaker 1: One of the stigmas that comes along with disability is
27:20
Speaker 1: this idea that like hyper aware and hyper intelligent women
27:26
Speaker 1: can't also be struggling with things like autism or ADHD
27:31
Speaker 1: or a chronic pain or anything like that because we
27:36
Speaker 1: know how to mask and function so well.
27:40
Speaker 2: When in reality, all that masking is the natural consequence
27:44
Speaker 2: of a lifelong being forced to fit into specific mold,
27:47
Speaker 2: specific boxes in order to stay safe, in order to
27:50
Speaker 2: stay protected, in order to not stand out in a
27:53
Speaker 2: way that causes you harm. And it's so problematic that
27:57
Speaker 2: even though being able to function in school does not
28:01
Speaker 2: mean that you will function in a workplace, and even
28:03
Speaker 2: if you function in school quote unquote function, then let's
28:07
Speaker 2: discuss what that functioning actually means, because you are not
28:10
Speaker 2: functioning very well if you go somewhere to school or
28:14
Speaker 2: if it's a workplace either way, and then you come
28:17
Speaker 2: home and you are not able to get up out
28:19
Speaker 2: of bed at all because you cannot stop vomiting because
28:21
Speaker 2: of the overexertion, and you go straight into a migrain
28:24
Speaker 2: episode that lasts until you got to get out of
28:27
Speaker 2: the house again. Then you mask and you collapse, and
28:29
Speaker 2: you mask and you collapse. And that's something that I
28:31
Speaker 2: did for well the majority of this past decade. And
28:35
Speaker 2: trust me, when I say you cannot outrun your disabilities,
28:38
Speaker 2: they will come back stronger and worse and less treatable
28:42
Speaker 2: than before. So I know it's a massive privilege to
28:45
Speaker 2: be able to even rest at all when you're disabled
28:48
Speaker 2: and to ask for that help. But when you can
28:50
Speaker 2: do it as soon as you possibly can.
28:53
Speaker 1: I think it's so like what a weird sentence that
28:57
Speaker 1: has to be said, where it's like, we know we've
29:00
Speaker 1: been told that like, as a human you need three
29:04
Speaker 1: meals a day, drink plenty of water, and eight hours
29:09
Speaker 1: of sleep every night, and then we also also say
29:12
Speaker 1: it's a privilege to get to rest when your body
29:15
Speaker 1: tells you to rest.
29:17
Speaker 2: It's bizarre the fact that we got to this point
29:20
Speaker 2: as a society, I mean well.
29:23
Speaker 1: And also back to the rest thing. I recently read
29:29
Speaker 1: the statistic that eighty percent of any healing that your
29:34
Speaker 1: body is going to do when it's in distress happens
29:38
Speaker 1: during sleep. So then I think about all of the
29:41
Speaker 1: times that I went to work with the flu or
29:45
Speaker 1: I gritted my teath through a migraine episode and finished
29:51
Speaker 1: out my workday or whatever, And how often we're told
29:55
Speaker 1: to prolong our suffering in the name of making some
30:00
Speaker 1: other dude a dollar.
30:04
Speaker 2: And how normalize.
30:06
Speaker 1: And it's not worth it. It's never been worth it.
30:09
Speaker 2: I've ruined my body over it. I don't think I
30:12
Speaker 2: will ever get the quality of life back that I
30:14
Speaker 2: had ten years ago. And I would do everything that
30:18
Speaker 2: I've done in the past decade. I would do it
30:19
Speaker 2: all over again. However, the only reason I would do
30:23
Speaker 2: it all over again is because this was the only
30:24
Speaker 2: option I had. There was no other option for me.
30:27
Speaker 2: The alternative was prostitution. The alternative was homelessness, the alternative
30:32
Speaker 2: was being too like being so hungry, I would just
30:36
Speaker 2: disappear in size. There was no alternative. When those are
30:41
Speaker 2: your alternatives, there is no alternative.
30:45
Speaker 1: And I think that we need to start talking harshly
30:49
Speaker 1: to people to be like, this is a reality that
30:52
Speaker 1: we all actively choose. Unless you're doing anything to fight
30:56
Speaker 1: against it, unless you're voting, unless you're donating, unless you're
31:02
Speaker 1: speaking up, writing think pieces about how everything is fucked up,
31:07
Speaker 1: starting a podcast about how everything is fucked up. Unless
31:11
Speaker 1: you are doing those things, you are co signing the
31:14
Speaker 1: fact that we all withhold aid from everyone so that
31:21
Speaker 1: ten ugly dudes can be rich, like just ten ugly dudes.
31:28
Speaker 2: The whole Like, also, like, rich people don't die if
31:32
Speaker 2: you tax them more disabled people do. The current rules,
31:36
Speaker 2: the current legislation, the current way the system is functioning.
31:40
Speaker 2: Disabled people are literally, and I'm not over exaggerating, we
31:44
Speaker 2: are literally dying. The only reason I'm not homeless yet,
31:47
Speaker 2: the only reason i still have food in the fridge,
31:49
Speaker 2: the only reason I'm still able to pay for my
31:51
Speaker 2: uncovered healthcare expenses is because I've been crowdfunding for almost
31:55
Speaker 2: a year. That is the most bizarre thing I've ever
31:57
Speaker 2: had to do, and it's the most bizarre reality. And
32:00
Speaker 2: so many of us are forced to live in that
32:02
Speaker 2: reality because what is our alternative dying?
32:05
Speaker 1: Well, literally, yeah, you know, I am a big fan
32:10
Speaker 1: of the Dropout TV community and their comedians, and back
32:14
Speaker 1: when Dropout was college humor, Brendan Lee Mulligan, one of
32:19
Speaker 1: the comedians, first did a skit about how it's ridiculous
32:23
Speaker 1: that we have so many flavors of oreos when the
32:26
Speaker 1: original Oreo is a perfect cookie. And when that took off,
32:31
Speaker 1: he went after a different corporation, but it ended up
32:34
Speaker 1: being like the unfunniest skit in the world because he
32:38
Speaker 1: went after go fund me and he would and he
32:41
Speaker 1: was the CEO just being like, yeah, we just had like,
32:46
Speaker 1: you know, when we started GoFundMe, we thought it would
32:48
Speaker 1: be for things like vacations or you know, put my
32:53
Speaker 1: kid through art school, like maybe get an improv class
32:57
Speaker 1: or something. But people are getting cancer treatments from it,
33:02
Speaker 1: and it was like this whole dystopian skit of this
33:06
Speaker 1: CEO have to having to grapple with the fact that,
33:09
Speaker 1: like people are using an app that I thought with
33:12
Speaker 1: worrying people joy and instead they're trying to like pay
33:16
Speaker 1: for their kids braces yeah and survive.
33:19
Speaker 2: Yeah. Yeah, so out of touch to like so out
33:24
Speaker 2: of touch.
33:25
Speaker 1: And along with like not believing that everyone deserves care.
33:30
Speaker 1: We also demonize people who quote unquote can't work, and
33:35
Speaker 1: we one of the hardest things about being under employed
33:41
Speaker 1: is every time I do feel happy or I do
33:44
Speaker 1: go do something that would bring me joy, I have
33:47
Speaker 1: to be like, well, and now everyone thinks that not
33:50
Speaker 1: only am I a shitty, underemployed, poor person, but I
33:55
Speaker 1: also am delusional and wasteful because I had I went
33:59
Speaker 1: to the five dollars movie today, even though I make
34:02
Speaker 1: sure to go on discount days where the popcorn is free.
34:07
Speaker 2: That is actually great. Freepcorn sounds great.
34:10
Speaker 1: I love it every Tuesday. I'll be seeing Spider Man
34:14
Speaker 1: later today. But it's still like we feeling that people
34:20
Speaker 1: deserve care and deserve a quality of care across the
34:25
Speaker 1: board that is equitable is one thing, but we also
34:30
Speaker 1: just believe that like poor people who can't work also
34:34
Speaker 1: shouldn't like get to smile. The amount of times that
34:37
Speaker 1: I'm like that, I've heard people in this country be like, well,
34:40
Speaker 1: why should foods stamps be allowed to pay for cake mix?
34:49
Speaker 1: It it should be going to things like fruits and vegetables.
34:54
Speaker 1: Why would you need a cake mix? And then someone
34:56
Speaker 1: just goes because every kid has a birthday just to
35:01
Speaker 1: name something, just to name something. It's like when I
35:04
Speaker 1: was teaching, and at the school I was teaching it,
35:09
Speaker 1: you had to earn everything. You had to, like earn
35:12
Speaker 1: your right to go to the bathroom with toilet paper.
35:16
Speaker 1: And one year I had just had it, and it
35:19
Speaker 1: was probably my last year teaching, and I gave my
35:24
Speaker 1: kids Valentines for Valentine's Day and like plan them a
35:29
Speaker 1: little party or whatever. But school wide, everyone had agreed
35:34
Speaker 1: that in order to take time away from instruction for
35:38
Speaker 1: Valentine's Day, you had to earn so many points or
35:41
Speaker 1: so many school bucks or whatever and buy your way
35:45
Speaker 1: into the holiday. And my kids did. And my kids
35:51
Speaker 1: didn't earn it. You know, my kids had haltany of
35:55
Speaker 1: issues and they just didn't earn it. And I planned
36:01
Speaker 1: them in activity anyways, because it's my room, I can
36:03
Speaker 1: do what I want. And when one of our behavior aids,
36:11
Speaker 1: who I was like good friends and came in saw
36:15
Speaker 1: me doing my like secret Valentine's Day celebration. Anyway, Hey
36:22
Speaker 1: thought your kids did it earned less? And I was like, hey,
36:27
Speaker 1: everyone in America woke up today and it was Valentine's Day.
36:30
Speaker 1: You don't earn Valentine's day. It is simply a.
36:34
Speaker 2: Day, literally, and Valentine's Day and of itself is already
36:38
Speaker 2: so capitalistic, Like, why make it even more capitalistic?
36:41
Speaker 1: Excuse you?
36:42
Speaker 2: I feel like people often think that poverty is personal
36:46
Speaker 2: or moral failure, and same goes for disability, when the
36:49
Speaker 2: opposite is true. What is true, however, is that minorities
36:53
Speaker 2: are more likely to be poor. Research shows time and
36:57
Speaker 2: again that it isn't heart work or dedication that determ
37:00
Speaker 2: ruan's once socioeconomic status, but rather how much privileged one has.
37:04
Speaker 2: Disabled people are twice as likely to be poorer than
37:08
Speaker 2: people with no health concerns. Survivors of domestic and or
37:11
Speaker 2: sexual violence are stististically more likely to end up in poverty,
37:15
Speaker 2: to become homeless, or to become unemployed. Black Indigenous people
37:19
Speaker 2: of color are more likely to live in poverty than
37:21
Speaker 2: their white neighbors. For the LGBTQIA plus community, and their
37:25
Speaker 2: heterosexual counterparts goes the same. Poverty is not personal or
37:30
Speaker 2: moral failure. It's the result of a system working exactly
37:33
Speaker 2: the way it's supposed to, protecting the privileged while reinforcing inequity.
37:38
Speaker 2: Poverty is a policy choice, not a personal one.
37:41
Speaker 1: Yeah, honestly, I and I do tell that to my
37:46
Speaker 1: friends all of the time, because, like after COVID, I
37:50
Speaker 1: have had a litany of friends just not be able
37:53
Speaker 1: to get back on their feet due to the worldwide
37:57
Speaker 1: health emergency that we had, not because we did a
38:02
Speaker 1: bunch of coke, not because we spent too much money
38:05
Speaker 1: going to Cabo. We literally had a worldwide health emergency
38:12
Speaker 1: we had to shut down.
38:15
Speaker 2: Yeah, and we now know that long COVID exists, so
38:17
Speaker 2: many people got long COVID, so many people got incurable
38:22
Speaker 2: health conditions as a result of COVID infections. It's been
38:25
Speaker 2: shown on such a massive skill like today, we know
38:28
Speaker 2: that COVID can trigger or worsen or lower the threshold
38:33
Speaker 2: for pots to develop, just to name one. I don't
38:36
Speaker 2: think I ever was the same after having having had
38:39
Speaker 2: several COVID infections. With my first COVID infection, I was
38:43
Speaker 2: almost hospitalized. And the only reason I wasn't hospitalized is
38:46
Speaker 2: because I was literally passed out for four weeks, unable
38:48
Speaker 2: to call to the hospital to get myself hospitalized.
38:51
Speaker 1: And then, do you know what COVID taught me? If
38:54
Speaker 1: I can at least sleep, I can live through it
38:57
Speaker 1: because again, my body would be at rest. So now
39:01
Speaker 1: anytime I'm like, ooh, is up the stomach flu, I'm
39:04
Speaker 1: going to bed like it's just you, sticking to those
39:08
Speaker 1: hours to try and reclaim some of my health. So
39:13
Speaker 1: a three day flu doesn't become a six day flu,
39:17
Speaker 1: doesn't become the rest of my life or god forbid,
39:20
Speaker 1: like long term digestive like harm or injury, because like
39:29
Speaker 1: it's just like, well, I got to keep going. Well,
39:31
Speaker 1: I have to prove to people that I'm worthy. Who
39:33
Speaker 1: are we proving.
39:34
Speaker 2: To the worst part when it comes to like sleep,
39:39
Speaker 2: people with cluster headaches most of the time have the
39:41
Speaker 2: majority of their episodes at night. I do not. I'm
39:43
Speaker 2: very lucky that way. But the hypothalamus is involved in
39:48
Speaker 2: the presentation of cluster headaches, and that is also where
39:52
Speaker 2: the biological clock resides in the brain sort of say.
39:55
Speaker 2: And so a lot of people who live with cluster
39:59
Speaker 2: headaches either when they go to sleep, they are woken
40:01
Speaker 2: up by a cluster headache ten or twenty minutes later.
40:03
Speaker 2: So many of those people don't sleep for years on
40:06
Speaker 2: end apart from ten to twenty minutes here and there,
40:08
Speaker 2: then an episode, then another ten and twenty minutes then
40:11
Speaker 2: an episode, et cetera. And for me, thank god I
40:14
Speaker 2: sleep at night, but if I'm woken up out of
40:16
Speaker 2: my sleep in the morning by an alarm, by a person,
40:18
Speaker 2: by a sound, by a pigeon, by anything, I instantly
40:22
Speaker 2: go into a cluster headache attack that can take an
40:24
Speaker 2: entire day.
40:25
Speaker 1: No, I'm telling you, I so I TikTok also diagnosed me. Well,
40:30
Speaker 1: my therapist tried to diagnose me with PMDDA and then
40:36
Speaker 1: doctors wouldn't take me seriously. And also you have to
40:41
Speaker 1: have healthcare for or health insurance for a doctor to
40:45
Speaker 1: take you seriously, and no and so. Anyways, so I
40:51
Speaker 1: have one week out of the month where I can't
40:54
Speaker 1: think my way out of the paper bag. I truly can't.
41:00
Speaker 1: People are like, what's wrong with you today, and I'm like,
41:04
Speaker 1: I have pmdd I don't know well. And this is
41:07
Speaker 1: how my therapist like caught it. I went to therapy
41:14
Speaker 1: during my during probably a PMDD week, and I started
41:19
Speaker 1: talking about how I was convinced that all of my
41:21
Speaker 1: friends hate me, and they all just like form separate
41:24
Speaker 1: little clubs to talk about how much they hate me,
41:27
Speaker 1: and that's why so and so didn't do this or
41:29
Speaker 1: so and so didn't invite me here, and she went, stop,
41:33
Speaker 1: how close are you to your period? Wow?
41:36
Speaker 2: That is so good that she like picks up on
41:39
Speaker 2: it immediately because.
41:40
Speaker 1: She's like, I've never seen you more paranoid. She goes,
41:43
Speaker 1: you are usually pretty calm and collective and apollo like,
41:47
Speaker 1: pretty patient with your friends, and today it's just madness.
41:52
Speaker 1: And for that entire week, I can't make any decisions,
41:56
Speaker 1: I can't feel like and I'm writing this person off,
41:58
Speaker 1: I'm breaking up with this person, any of it because
42:02
Speaker 1: my brain is just like, the entire world is working
42:05
Speaker 1: against you because they all hate you so real.
42:10
Speaker 2: Punity is the most bizarre thing I've lived through. No, well,
42:14
Speaker 2: maybe not the most bizarre thing at this point, but
42:16
Speaker 2: one of the most bizarre things surely the things that
42:19
Speaker 2: go on in your brain when you're mid PMDD versus follicular.
42:21
Speaker 2: The difference is so massive it's even just hard for
42:25
Speaker 2: yourself to be able to understand that, let alone people
42:28
Speaker 2: around you. It's such a struggle.
42:30
Speaker 1: Well, and then when I finally got diagnosed, first I
42:33
Speaker 1: was diagnosed with anxiety, and then they put me on
42:36
Speaker 1: a pill for anxiety, and it turned me into a zombie.
42:38
Speaker 1: So they were like, maybe it's depression. So then they
42:42
Speaker 1: put me on well Beaturn and I was like, hey,
42:45
Speaker 1: since we're talking about my depression, can we talk about
42:47
Speaker 1: like TikTok told me I had ADHD. And my therapist like,
42:51
Speaker 1: it's a pretty strong case. And she goes, well, I
42:56
Speaker 1: can't put you on an upper and a downer at
42:59
Speaker 1: the same time, because again, and we only diagnose based
43:01
Speaker 1: on whether or not uphill is going to fix it,
43:05
Speaker 1: and we don't go any further than that. And she goes, but, well,
43:09
Speaker 1: Beautrin it like helps with fifty other different things. So
43:15
Speaker 1: if it's helping with your depression, good news. It'll help
43:19
Speaker 1: with your ADHD too. Except for that PMD D week
43:22
Speaker 1: I have every month where none of my meds work
43:26
Speaker 1: and I'm just crawling the walls.
43:30
Speaker 2: I'm looking at the Beautrene right now. I'm just trying
43:33
Speaker 2: to see, ah that one. Yeah, yeah, we call it
43:36
Speaker 2: different here, that makes sense. Oh, I really hope it's
43:38
Speaker 2: going to help you. That would be awesome.
43:40
Speaker 1: No, I've been on it for a couple of years
43:42
Speaker 1: and I can clearly see the difference. Great I do.
43:49
Speaker 1: I do like wellbutriment because it still allows me to
43:51
Speaker 1: feel a full range of emotions throughout my day. Like
43:55
Speaker 1: I know people who are on other meds who can
43:57
Speaker 1: no longer cry, and I'm like, well, how does that
44:00
Speaker 1: get out of your body than when you're sad? Like
44:03
Speaker 1: part of like the act of crying in itself is
44:07
Speaker 1: cathartic in a.
44:09
Speaker 2: Release, I've been on such a high dose of antidepressants
44:13
Speaker 2: for years, and like then I stopped for a little bit,
44:15
Speaker 2: and now I'm back on that same antidepressant, but on
44:18
Speaker 2: a way lower dosage, like one tenth of what I
44:21
Speaker 2: was on. And in the period that I was on
44:23
Speaker 2: that massive dosage, I genuinely believe, and this may be
44:29
Speaker 2: the Lulu honestly, but I genuinely believe that my lack
44:33
Speaker 2: of emotions and my inability to properly live through and
44:37
Speaker 2: feel through those emotions it turned in words, and it's
44:40
Speaker 2: turned like it worsened all of my chronic almost as
44:43
Speaker 2: I genuinely feel that way, I think that if I
44:44
Speaker 2: was able to live through it, I would have been
44:48
Speaker 2: able to process it far more. I don't think that
44:50
Speaker 2: at that point I would have been able to so
44:52
Speaker 2: in that sense, it was definitely life saving for me.
44:55
Speaker 2: But yeah, now I got this, so you.
44:58
Speaker 1: Know, no, I believe that because now we know that
45:01
Speaker 1: the number one killer of women besides men is stress
45:05
Speaker 1: and also.
45:06
Speaker 2: Complex PTSD is like, if you have complex PTSD, you're
45:09
Speaker 2: so much more likely to have endometriosis. I don't know
45:12
Speaker 2: my postural orthostatic tech acardia syndrome. I believe that even
45:18
Speaker 2: IBS may be related to it. Not Harpson, sure, but
45:22
Speaker 2: like the previous ones said I mentioned, definitely, it's so obvious.
45:26
Speaker 1: Honestly, yeah, And I will say that like that's why
45:33
Speaker 1: therapy and medication has been so helpful, because now I
45:37
Speaker 1: can knock myself out of like I actually don't have
45:40
Speaker 1: control over this, so I'm not gonna stress myself out
45:44
Speaker 1: about this. Now I'm human and I still have my
45:48
Speaker 1: wackado moments.
45:50
Speaker 2: But don't we all.
45:51
Speaker 1: But I started, like when you have a shaky foundation
45:56
Speaker 1: on whether or not you would even receive care should
45:59
Speaker 1: you get a big time illness, I did have to
46:03
Speaker 1: start being like I can't stress out over the tiny
46:06
Speaker 1: things because that just forms cancer in your body. Like
46:10
Speaker 1: your body goes in distress and it sends through your
46:13
Speaker 1: body all of the bad chemicals and I don't know
46:16
Speaker 1: that's how you like. I don't know. I can't risk it.
46:21
Speaker 2: I get it. Yeah, Honestly, the more relaxed you are
46:23
Speaker 2: on everything, no matter how bad it is the other day,
46:26
Speaker 2: my bedroom ceiling literally started pouring with water, and I
46:30
Speaker 2: was just like, you know, now there's a hole in
46:33
Speaker 2: my bedroom ceiling, and that is what it is. We
46:35
Speaker 2: get some extra humidity in the bedroom or something. I
46:38
Speaker 2: don't know. This is not the biggest issue on my
46:40
Speaker 2: hands right now. I'm working several legal cases. I'm calling
46:43
Speaker 2: with lawyers and pharmacies and hospitals and doctors every single day.
46:47
Speaker 2: I don't got some to worry about a hole in
46:49
Speaker 2: my in the roof of my bedroom. But then there's
46:52
Speaker 2: a hole in the roof of my bedroom, So what
46:54
Speaker 2: can you do besides worry? So right exactly, I be like, okay,
46:58
Speaker 2: I got a fountain indoors.
46:59
Speaker 1: Now I have a fountain indoors. Now what the hell? Well,
47:04
Speaker 1: and you know, the sound of running water is really calming.
47:08
Speaker 2: I need this or sleeping under a bridge, So either
47:10
Speaker 2: way we're going to get the water.
47:15
Speaker 1: Oh my god, your humor has become so sick because
47:20
Speaker 1: of all of the things that we have to witness
47:22
Speaker 1: and lift.
47:23
Speaker 2: Through like if you were to listen to our episodes,
47:27
Speaker 2: like chronologically it gets progressively worse over the years.
47:34
Speaker 1: And we did start this call with like a check
47:36
Speaker 1: in with one another, and we were pretty positive before.
47:40
Speaker 1: Yeah yeah, We're like, yeah, I had I had an
47:43
Speaker 1: okay weekend. How was your weekend? I? Oh, okay, Well,
47:48
Speaker 1: let's go ahead and move into our time honored tradition.
47:53
Speaker 1: Through all of your experiences with trying to get the
47:58
Speaker 1: disability aid that you deserve, what do you think has
48:02
Speaker 1: been your biggest takeaway and is the one lesson that
48:06
Speaker 1: people should write away? No from your experience.
48:11
Speaker 2: Oh, that's such a good question. Give me one second
48:14
Speaker 2: to Samarny on this for a sec. I think the
48:16
Speaker 2: biggest takeaway for me personally has been to listen to
48:20
Speaker 2: my body and that you cannot outrun your disabilities. You
48:24
Speaker 2: cannot outrun the symptoms your body is having. The only
48:27
Speaker 2: thing you can do is take care of it and
48:29
Speaker 2: listen and not go over your own boundaries, no matter
48:32
Speaker 2: what it's going to cost you. And I wish I
48:36
Speaker 2: would have listened to my body much much, much sooner
48:40
Speaker 2: than I may not have been in this bizarre situation
48:43
Speaker 2: that I am in.
48:44
Speaker 1: Today.
48:45
Speaker 2: So if you take away one thing, it is to
48:48
Speaker 2: listen to your body please, and to learn introceptive skills,
48:53
Speaker 2: especially if you're struggling with autism spectrum disorder for example,
48:58
Speaker 2: Introceptive skills will save your life. I swear to God,
49:01
Speaker 2: And if you have a dollar you can donate, that
49:04
Speaker 2: will be fantastic.
49:06
Speaker 1: Well, then what is something that you would like to
49:09
Speaker 1: manifest for the collective energy to happen?
49:15
Speaker 2: For disability AID to become easily accessible within a structure
49:20
Speaker 2: that actually benefits disabled people, though that may be a
49:24
Speaker 2: big ask at this point. And otherwise, when it comes
49:28
Speaker 2: to me personally, I am hoping and manifesting that my
49:31
Speaker 2: crowdfunding and pay will reach the final goal amount so
49:34
Speaker 2: that I'm able to survive until my case makes it
49:35
Speaker 2: to court.
49:36
Speaker 1: Now, all of that crowdfunding information will be in our
49:41
Speaker 1: show notes. I know that we're all experiencing like unprecedented
49:47
Speaker 1: times when it comes to everything, But one of the
49:51
Speaker 1: things that I have been doing just to feel a
49:54
Speaker 1: little bit better is to send people ten dollars who
49:57
Speaker 1: need ten dollars whenever I can, right.
50:01
Speaker 2: And that is so beautiful and honestly, if you can't
50:03
Speaker 2: afford to donate. I totally understand broke as fuck. You
50:06
Speaker 2: don't have to explain to me how being broke works.
50:08
Speaker 2: I totally get it. There's other things you can also
50:11
Speaker 2: do to help, tagging journalists, tagging people who have similar
50:14
Speaker 2: conditions who may be able to help out financially, sharing
50:17
Speaker 2: my content on your story. Sharing the link to my
50:20
Speaker 2: crowdfunding with friends is also super helpful. So if you
50:22
Speaker 2: cannot donate, I totally understand. Any help is welcome at
50:25
Speaker 2: this point. So if you want to know about the
50:28
Speaker 2: help and how you can give it, check out the
50:30
Speaker 2: show notes and.
50:31
Speaker 1: We talk about it all the time. But the only
50:33
Speaker 1: way that we're all going to get through these unprecedented
50:37
Speaker 1: times is together. So if you have a similar story
50:42
Speaker 1: to anything that you hear on this podcast, if you're
50:46
Speaker 1: not comfortable sharing it, share it with me and I'll
50:50
Speaker 1: read it anonymously. But eventually we have to start like
50:53
Speaker 1: calling out these rich, ugly men and just being like,
50:58
Speaker 1: we're sick of you, we're voting against you. We can't
51:03
Speaker 1: stand what you're doing to our world, to our air,
51:06
Speaker 1: to our water supply, to the animals that also deserve
51:11
Speaker 1: a place to live and be happy. Like it's getting
51:15
Speaker 1: icky out here, and we have to start calling a
51:17
Speaker 1: spade a spade, like, we got.
51:20
Speaker 2: To put the hands together and make sure that we
51:23
Speaker 2: have each other when the systems that we're built to
51:26
Speaker 2: quote unquote help us are failing.
51:29
Speaker 1: Yeah, we have to start holding politicians worldwide, but also locally,
51:34
Speaker 1: because I know that globally gets real daunting, but locally,
51:39
Speaker 1: start going to your town halls, into your politician events
51:45
Speaker 1: and ask them what are you doing to make sure
51:48
Speaker 1: that across the board people in our area have healthcare
51:52
Speaker 1: and the aid that they need and w wow.
51:56
Speaker 2: Be annoying. Speak up, don't be afraid to take up space.
52:00
Speaker 1: Yeah, it's their job to care about this shit. Ellen.
52:06
Speaker 1: I know that I said I would put all of
52:08
Speaker 1: your crowd funding information in the show notes, but is
52:11
Speaker 1: there anything else you would like to plug?
52:14
Speaker 2: If you want to connect with me, see me anywhere
52:16
Speaker 2: on your Instagram feed. My Instagram handle is buy Ellen
52:18
Speaker 2: Moore with double oh, and I would love to see
52:21
Speaker 2: you there.
52:22
Speaker 1: Yeah, because remember you might not have a dollar, but
52:26
Speaker 1: you might have a nice thing to say, and that's
52:28
Speaker 1: worth a way goold too. Every day when we're struggling,
52:32
Speaker 1: it takes one nice comment and I'm like, maybe I
52:34
Speaker 1: can make it through the day.
52:37
Speaker 2: I can make it.
52:37
Speaker 1: Yeah, I can make it. Ellen, thank you so much
52:41
Speaker 1: for being here. I always love and cherish our time
52:45
Speaker 1: that we get to spend together, and it is too
52:47
Speaker 1: few time. Differences are a bit.
52:52
Speaker 2: Yes, they are. Thank you so much for having me.
52:55
Speaker 2: It was a blast to catch up with you and
52:57
Speaker 2: to be on the show again. I'm honor thank you,
53:00
Speaker 2: no problem.
53:01
Speaker 1: We love having you. And remember, tolerators. You can find
53:05
Speaker 1: us at Men I've Tolerated pod on Instagram, Nampley K
53:09
Speaker 1: one two four on Instagram, and TikTok to All the
53:12
Speaker 1: Men I've Tolerated before is also on YouTube and Patreon.
53:16
Speaker 1: Patreon is where you'll find free content like blog posts
53:21
Speaker 1: and little Also if you're trying to get away from
53:24
Speaker 1: social media because of those rich, ugly men stealing our data,
53:29
Speaker 1: I am repurposing social media as content onto Patreon and
53:34
Speaker 1: it is a little bit more of a safe space
53:37
Speaker 1: for us to express ourselves. And there are free content
53:42
Speaker 1: and also bonus episodes and ad free episodes that you
53:45
Speaker 1: can pay a monthly fee for. And remember, toleraators, you
53:49
Speaker 1: don't have to smile through anything. You're tolerating, including literally
53:54
Speaker 1: just living on this planet with a set of circumstances
53:58
Speaker 1: that you did not ask for and a body that's
54:01
Speaker 1: not acting in a way that you would want it
54:03
Speaker 1: to act, and being told, actually, we have nothing for
54:07
Speaker 1: you when it comes to aid. Try working harder, And
54:11
Speaker 1: then when you explain to them, well, I'm actually not
54:13
Speaker 1: able to work, them going huh, seems like our hands
54:17
Speaker 1: are tied. Then smiles are for joy, and that's Bulgit