Covid at College and Americans with Disabilities

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Topics Discussed:

  • Covid and Colleges

  • Moment of Positivity

  • Americans with Disabilities

  • Outside of Politics

Many thanks to our guests:

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Episode Resources:

Colleges and Covid

Colleges are attempting to control partying by taking steep disciplinary measures against students who gather, Erica Pandey writes:

  • Northeastern sent warnings to 115 freshmen who said in an Instagram poll that they plan to party. The university went as far as to threaten to rescind admissions.

  • Purdue and Syracuse have both suspended students who have been caught partying, and UConn has evicted them.

But universities that are reopening without substantive testing and tracing strategies can't just point fingers at the students, experts say.

  • "It’s irresponsible and the outcome is predictable, and blaming the students is just misplaced," says Joshua Salomon, a professor of medicine at Stanford.

Some plans do seem to be working:

  • Public health experts say the best way to prevent infections on campuses from turning into outbreaks is to test every student every few days.

  • The University of Illinois at Urbana-Champaign is doing just that, and conducted 17,000 tests on the first day of classes alone. "Everybody's watching U of I right now," Salomon says.

The Americans with Disabilities Act

Transcript:

Beth Silvers: [00:00:00] Hello everyone. Thank you for joining us for this episode of Pantsuit Politics. We are really excited to continue the discussion that we began on Friday's podcast, Five Things you Need to Know about the Americans with Disabilities. Today, we're going to bring you four different voices from our community in the area of disability advocacy.

Before we do, though, we're going to talk a little bit about schools because you know, just can't get enough on schools right now. And we're specifically going to talk about the differences in the way that colleges and k-12 public schools are handling COVID-19. We will end as always with what's on our minds outside of politics.

And Sarah, I just need to offer a correction here at the beginning. Last Tuesday, when I was expounding on my excitement about wastewater testing I said that Arizona State University had identified COVID cases through wastewater in order to quarantine people and ensure that the spread did not continue.

It was not Arizona State University, as many people have pointed out to me, it was The University of Arizona. And so many apologies to the Wildcats and well done University of Arizona.

Sarah Stewart Holland: [00:01:06] That does not sound like an important distinction to me, but I do not live in Arizona. And I feel like if you lived in Arizona, that's probably real important. Maybe like the difference between Western Kentucky University and the University of Kentucky? 

Beth Silvers: [00:01:18] I think so. I respect that distinction and I'm profoundly sorry. 

Sarah Stewart Holland: [00:01:22] So this is a good lead into the college conversation. And the first thing I want to say is I'm tired of these getting lumped together. I'm tired of the K through 12 being lumped together with conversations about college students. To me, this feels like. Entirely different universes with entirely different risk assessment decisions to make, not to mention entirely different priorities, which we're going to get into in a minute.

Beth Silvers: [00:01:47] Well, and I will add to that, that I don't even know that we should do K-12. I said it, but I don't think the risk assessment is similar for kindergartners and seniors in high school. I think that the way school systems are operating right now, now, and I understand why in that sense of, we have to make a decision for the entire district and we have to do the same thing for the entire district is an approach, that is not supported in the data that we have about COVID in schooling. And so, precision I think is very important when you're discussing risk assessment in schooling.

Sarah Stewart Holland: [00:02:20] We're going to lean really heavily on the reporting of Anne Helen Petersen, friend of the pod. She's going to be on later this month to talk about her new book. Can't even, I can't wait for that, but she did some great gathering of testimonies from particularly professors at different types of universities.

And that's the thing like, right? We can't even really talk about colleges as one group because you're talking about like small, rural, liberal arts universities all the same as like ginormous state universities. And of course the risk assessment, depending on the type of university is going to be really different.

But I think what her reporting did a great job of is particularly with regard to the state university decision making is like, there's some real, real consumerism going on right now. The funding for higher ed has been cut. That's not news to anybody it's continuously cut. And so they have to depend more on private funds and tuition.

And so there trying to get everybody back, get that tuition, literally, like there was somebody that was like, it's clear that just want them there long enough to get beyond the point where people can't ask for their tuition money back, and then they're just going to send everybody home. Cause there's really no way to do this and contain the spread.

Beth Silvers: [00:03:29] It's so stark to read her reporting on this and to really think through what the incentives are. The distinction is so clear when you look at community colleges, which have been very adaptable to COVID-19 community colleges have completely different incentives because of the funding model. And so many community colleges were able to quickly and seamlessly transitioned to online education.

And the other reason that community colleges. Did this in such a different way than other institutions and Anne Helen writes about this. Oh, in a way that just makes you sick and gives you chills at the same time, community colleges are not selling a lifestyle brand. Yup. And that's what so many colleges are selling and I'm not talking about that to say these are that's evil.

I don't think it is. I understand why. Listen, I approached college as a consumer, as much as the next person I did the on campus visit. I was looking at how nice are the dorms, how good are the activities? And the standards have escalated dramatically since my college search in terms of what people are looking for.

So I get that. Not every professor is sitting around and going well. We really do want to make sure that we have. That we have this country club vibe for our students. I think the professors hated as much as everybody else. Um, but that is going on. Yeah. Yeah, 

Sarah Stewart Holland: [00:04:51] because it's not the professors, especially not the adjunct professors that are parts of the budget cuts, you know, it's just, it was a decision that what we're selling college, what we're selling private universities and public universities and that sort of.

Go away to college situation is the lifestyle as opposed to we're selling the education and the expertise of the professors. Um, and so that's where they're investing 

Beth Silvers: [00:05:16] and it is the lifestyle that makes it so dangerous for COVID-19 spread. I loved this from Seth Godin. I really appreciate his daily emails.

And he said the day that I read the piece from Anne Helen, his email said parents can do their kids a favor. If from an early age, they hear them say famous college and stuff. Good college. I like that. I'm adopting it. 

Sarah Stewart Holland: [00:05:40] That's just a famous college. And, you know, here's what I learned through my experience and watching people who did attend famous colleges, the lifestyle they're selling is really, especially when you reach the upper echelons as a network.

And I'm not saying it's not valuable. It is, but it's a network it's connections. Sometimes those are connections to the professors, but often their connections to your classmates and your classmates parents and the alumni network and these jobs. And, you know, I just think it's really hard because I love, you know, we've talked about this a lot.

I love every minute of college, I had the, I had a very stereotypical go away to college. I met my husband. I joined a sorority. Now I was a goody two shoes. I didn't do a lot of partying and I definitely would have been the one Narcan and all my fellow classmates who were planning to party in the face of COVID-19.

But you know, that experience was really valuable to me. And I just wish. I could convey that, like, it wasn't valuable because I had a full size bed and a C dorm, you know, like, and it's certainly not more important than the health and safety of the professors or the health and safety of my fellow students.

Like, but they don't have any margin. And that's a lot, there's a lot of causes for that, but they don't have a lot of margin to say, well, this semester is not going to work in person. Whereas a community college that does it do. On campus. Living can do that. And I think, you know, it's just, it's perpetuating a conversation, accelerating change so that we're going to have to really.

Talk about and make some decisions and make some systematic change. Does that reflect our values? What is college for? And look, it's not going to be one answer for everybody, right? It's not going to be, there's not going to be one. College is for this because sometimes it's. Vocational training and sometimes it's community college and then you go out into the real world and sometimes it is that four year traditional experience.

We need to give everybody more margin to make that decision and we get need to give college more margins to me. 

Beth Silvers: [00:07:42] Absolutely. Again. I'm not accusing anybody of anything here. I love so many people in higher ed, and that is a hard field to be in no matter where you are in it, right. It is so stressful. It is so competitive.

A lot of the things that make it difficult for students and parents may get infinitely more difficult for people who work in higher. Ed. What I think is so helpful about reporting oncologists through COVID-19 is it gives us a way to. To say what is, and to see it through a different lens instead of seeing it from that place of, Oh my gosh, how can I succeed in this system?

So that I get the check marks that I need to go on in my life and be successful and do what successful people do. This is a chance to step way back and go, Whoa, like a lot of that. Is kind of screwed up and not healthy and dramatically inequitable. And what are we doing? Setting up a system where we know the risk is high of spread.

And again, I know a lot of college students will get COVID-19 and be just fine. But we don't walk around signs telling what our anatomy is, and we don't know who is vulnerable to COBIT and we don't know who they'll interact with, who is vulnerable to COVID. And so being able to look at this and really clearly see the economic incentives and how they're playing out, it's important.

Sarah Stewart Holland: [00:09:06] Well, and I just think there's an aspect of. This should have been the place where expertise rained. This should have been the institutions where we can really solve some of these problems. And in some places we are, you know, like everybody's really watching the university of Illinois at Urbana champagne because they're doing 17,000 tests on the first day of class alone.

So because that's what the experts are saying. If you want to. Prevent infections and contain outbreaks in a campus setting. It's got to, there's going to be a lot of tests, a lot of tests. And so, you know, I wish that showing these institutions as trustworthy and a place where public health expertise is really leading the way could shine through, instead of places where the institutions are really driven by economic considerations.

Beth Silvers: [00:10:03] Sarah. We talked on our last Tuesday episode about having a moment of positivity in the world. That was your suggestion. And I love it. And people told us that they really appreciated it. I want to just say I gave her my moment of positivity this week that our listener email has seen a dramatic uptick in people saying.

I saw someone post something heinous on Facebook. I responded and took the conversation offline, or at least to a private space. And they listened and we had a real connection. And not that everybody changed their mind and said like, hallelujah, we're on the same page. But the quality of that interaction was really different because I took it offline and I am really inspired by those stories.

Sarah Stewart Holland: [00:10:47] Every single one of them makes me cry. Talking about it right now is probably gonna make me cry. That's probably how we know it will be a good moment of positivity is if I'm crying. But you know, we talked about this on the nightly nuance last Thursday, that there's all this. Narrative around civil war.

And what does our Facebook presence or our response to other people's Facebook presence mean? And how can we play a role? And every time I hear one of those stories, I'm just reminded. Yeah, that's true. We just need each other, like we just need each other. I don't know, no other way to put it and things are hard.

And so we need each other. Even more, we need each other even more. And every time one of you shows up for someone and gives grace in the face of something that you could have easily clicked a button and blocked from your life. It just, it makes me proud to be alive. It makes me proud to be a member of the human racism times.

That's Andrea. 

Beth Silvers: [00:11:41] Next up, we are going to talk with four members of the pantsuit politics community. About disability advocacy as we continue our celebration of 30 years of the Americans with disabilities act.

Sarah Stewart Holland: [00:12:04] we are so excited to continue this conversation with four women about disability advocacy. You're going to hear from Jenny who lives with chronic fatigue syndrome and who has advocated for years around funding for medical research. You're going to hear from Mary Sue who lives with blindness and spent her career working in the social security administration.

You're going to hear from Angie, a friend of ours from college, Angie son has autism. And you're going to hear from Nina, a longtime listener who is just beginning her work in disability advocacy. See, 

Beth Silvers: [00:12:31] this is just the tiniest attempt to scratch the surface of the broad array of experiences that exist around us.

And we hope that hearing from her listeners sparks more conversations in thinking in your life about barriers and access and empathy and inclusion. These conversations are deep. They required a ton of vulnerability and it felt important to me to share a story that I don't think I've ever shared with anyone best.

I can remember from my own experience I shared on Friday that I have fibromyalgia and that early in my career, I was really struggling to manage the pain and fatigue and just overall sickness that can accompany fibromyalgia. I also have shared many times on the podcast and especially on the nuanced life that I am a little bit addicted to success and other people's appraisal of my work.

And so early in my career, when I was dealing with these symptoms, I was sick a lot. There were a lot of days when I just could not get dressed and drive myself into the office. I was too sick to do it. I also was working to address that. So I had lots of doctor's appointments and I started a water therapy program that necessitated IB out of the office a lot.

I was still getting my work done, but I was not physically present in the space. And at one of my very first performance reviews as a new lawyer. One piece of feedback that I got was that it was really frustrating for my colleagues, that I was out of the office so much. And I cried sitting in the chair and the performance review.

And I think that the people giving the review to me did not understand why I was crying. And I think they thought it might've been tied to another aspect of that conversation, but I was so devastated that my health was an issue that anyone who I worked with, I don't know who made that comment, but that anyone I worked with would so casually rattle off something like that in a process where they had that shield of anonymity.

Instead of talking with me about it, I can't. Begin to put into words, the level of shame, like my face is hot, recounting it here more than 10 years later. And it is just important to me as we continue these discussions to recognize that my experience with disability has been an incredibly fortunate one.

And very few people in my life think of me as having a condition. And I don't think of myself that often as having a condition other than knowing that there are certain things I have to do to manage it. And so. It is hard for me to talk about this. And I want to say that because I recognize how incredibly hard it was for the listeners that I spoke with to talk to me about this.

And I so appreciate them sharing their heart in this way. And it's a reminder to me that. Any advocacy in this space requires this intensely personal spilling out of everything that you're living with in your body and in your mind and spirit about that bodily experience, um, or that experience with your own mind.

And I appreciate these folks very, very much. So let's start with Mary Sue. I adored talking with Mary Sue and learned so much from her Mary Sue's daughter is a listener of pantsy politics and connected us with Mary Sue. And I'm excited for you to hear about her experiences. I understand that you have been involved in advocacy on behalf of blindness for many years.

Can you tell me about that? 

Mary Sue Welch: [00:16:13] My career was working with the social security administration and when I retired, I then had the opportunity to work for two nonprofit organizations where. We were training people about a grant that social security had for encouraging people to return to work and. I worked for, as I said, two different agency and I had to do interviews with many people and talk to them about what their fears were concerning, returning to work and what issues they saw as being worrisome to the point that they were.

Beth Silvers: [00:17:00] Okay. What kinds of things did you hear? 

Mary Sue Welch: [00:17:03] Most of the time, I would hear that people, especially those of us who are applying, we're fearful of not being able to make our transportation workout. That is probably one of the biggest issues that we have, because even though we do have public transportation, often it is not timely.

And so people are fearful that they will not be at work on that time. Other things were from other disabilities, people were afraid that because of maybe mental or nerve injuries, neuro injuries not be able to work regularly. Charlie, maybe they could work Monday, but. After Monday, Tuesday and Wednesday, they just couldn't go back.

So their fear was that they would never be able to hold a position for very long. 

Beth Silvers: [00:17:59] And what kinds of resources or programs did you find helped, um, navigate both the, the emotion of those fears and the realities of those fears? Well, of 

Mary Sue Welch: [00:18:10] course, technology has done a lot too. Assist with isolation and, uh, of people with disabilities because we can use the technology to talk to one another.

We learn from each other and just being with someone when they tried to access things. For example, I used to have customers who were not able to call and try to earn it. Hi there. Transportation because they were so fearful of the way they spoke or are those issues. So I would often be on the phone with them and help them walk their way through the interview so they could get to go where they wanted to go and do what they wanted to do.

Beth Silvers: [00:19:00] Have you ever seen an employer who you thought this employer has really. Been thoughtful about creating an inclusive workspace. And if so, what kinds of things did you see that 

Jennie Spotila: [00:19:12] really were helpful? 

Mary Sue Welch: [00:19:13] Well, as I told you, I worked for social security, um, for 27 and a half years. And social security was absolutely.

Of course it was a government employer. It was absolutely wonderful to those of us who were blind before we had computers. They sent us voluminous amounts of information in braille. They had a braille unit in Baltimore that would either. Put things in Nebral or put them on audio tape. And then eventually we got computers and we had extensive training on how to use the technology.

And although it made things wonderful, it also made things very difficult because suddenly at my fingertips, there was lots of information that I. Didn't know, I should have been knowing all this John, so, but yes, technology has been a good help in that. That's been a wonderful employer. Um, also there are.

Some organizations such as state farm, farm insurance who do hire people with disabilities. Sometimes it's not a really good fit, but very often they will work with them, our employees to try to make things better. 

Beth Silvers: [00:20:39] I understand that governor Richards appointed you to the school board for the Texas school, for the blind and that you served for 14 years there.

Can you tell me about that experience and what you learned and what you saw that was really encouraging or really an obstacle? 

Mary Sue Welch: [00:20:55] He was the, one of the most wonderful experiences I have ever had because I attended the Texas school for the blind and visually impaired from first grade through my senior.

Year. And so being able to be on the school board, give back at such a different time in my life where they're at been so many changes was wonderful. I did not find in the difficult obstacles, the board. Um, I served as. Secretary vice president and president on the board. And I served two full terms and an extra two years that the governor had not decided to do.

Reappointments okay. I love doing that. I love going to the school meeting the teachers, seeing the kiddos and getting to learn from the students. What were things that were very important to them about the campus at school, such as for those with low vision, um, lighting at night, um, it was. They, they were very good at expressing what kind of lighting they felt that they needed and where it ought to be.

And I was very impressed with that. So it was a wonderful experience. I loved every minute of it. 

Beth Silvers: [00:22:27] Next, 

Sarah Stewart Holland: [00:22:28] Jenny shares her work on advocating for research, funding and transparency. So will 

Beth Silvers: [00:22:34] you tell us just a little bit about you and your career and kind of how you got. Involved in being an activist around disability 

Jennie Spotila: [00:22:42] work.

Sure. My entree into disability and activism was very sudden and unplanned. I was an attorney in Philadelphia at a large law firm, a little over a year into my career, and I woke up one morning with a sore throat. And I went to work anyway, and within a couple hours, it was difficult to walk. I had a high fever and various other infectious symptoms.

And after a few months I was diagnosed with myalgic encephalomyelitis, which most people know by the name chronic fatigue syndrome. And that was in 1994. And so I had to stop working for what I thought would be a month and I was never able to go back. So it's been 25 years. Of being largely home bound and.

When I first got sick, there didn't seem to be much going on in terms of research into this disease. And definitely in terms of the federal response to this disease. And 25 years later, there's been some change, but it's. Pretty minimal, you know, we could focus on progress or we can focus on how far there is to go.

And I usually focus on the ladder. I became involved in advocating with Congress and with NIH and CDC, for them to do more and to focus on the true disease and not some of the. Strange theories that have been promulgated at various times. And eventually my legal background came in handy. Again, I started asking factual questions about what NIH was doing, how they were doing it and started filing a lot of freedom of information act requests and taught myself how to parse a lot of that data.

And so over the last six years or so, I've been. Very focused on getting accurate information from NIH chiefly, but also other parts of the government, and then reporting that to my community so that all advocacy can be informed by the facts and not by guesswork or, um, broad generalizations. And so I've really taken a deep dive into that piece of disability, the activism.

Beth Silvers: [00:24:56] So tell us what NIH does today. And 

Angie Ferguson: [00:25:00] what you're doing 

Jennie Spotila: [00:25:01] through foyer request and 

Angie Ferguson: [00:25:03] otherwise to 

Beth Silvers: [00:25:04] hold NIH accountable around that work. 

Jennie Spotila: [00:25:06] So NIH is the largest funder of medical research and related health research in the country. And there. Budget is in the billions and billions of dollars. Historically my disease Emmy has gotten somewhere around five or $6 million a year in research, and it for people who don't have a.

Science background. That might sound like a lot, but it's almost nothing. Uh, research is extremely expensive, especially when you're doing research on people, as opposed to, um, research just at the bench and a microscope. And it hasn't really changed much over the years, maybe three to $6 million on average in the last.

12 years or so, there was a big shift, um, in 2017 and H finally decided to fund some collaborative research centers and they put out a specific request for those proposals. And so in 2017, the funding did jump up to about 13 million a year. It's dropped slightly since then, but that's where we're hovering right now.

So that's a big improvement. But relative to the amount of disability caused by this disease, Emmy, we think affects between one and 2.5 million Americans. At least 25% of us are home bound or even bedridden. Most people are unable to work or go to school. There is no diagnostic test. There is no treatment.

Most doctors don't understand the disease. So educating the medical community has been another really big issue. So in the context of all of that $12 million a year is a, I've called it pocket Lynch to NIH. It's very insignificant and we need a massive, massive infusion of funding in order to attract more researchers and get the science done.

FOYA requests. In this area have really been about fact checking the information. There's a perception has been a perception for a number of years that when grant applications come meant NIH to study, Emmy, those applications are being reviewed by people who have no expertise in the disease. And historically that's true.

The applications would be reviewed by people who had expert in pain, pain, medicine, dentists. Yeah. Psychologists, none of whom are particularly expert in the disease. And my foyer requests to get the information about who was reviewing the grants, helped us really bring that to light. And also show that again, there has been a shift.

There are now probably 70% of the reviewers would be considered experts in the disease. So again, that's an improvement, but it's not where we want to be. Certainly. An application that goes to NIH to do cancer research is going to be reviewed by experts in cancer and probably experts in the specific kind of cancer.

Our field is very, very small and that's directly tied to the small amount of funding. So there were very few experts. If a expert submits an application, they can't review it. They can't participate in that round of review. So there are a lot of challenges for NIH in terms of recruiting people who are experts and challenges for our scientific community in getting their applications funded.

There are a lot of barriers in the way and things that slow people down. And all of that translates into this trickle of money that does not produce results for people like me, who are living with the disease 

Beth Silvers: [00:28:54] circular to me. Am I, am I understanding that correctly? We're not putting up enough money.

Therefore there's not enough expertise. 

Jennie Spotila: [00:29:02] Therefore, 

Beth Silvers: [00:29:03] it's hard to have expertise in knowing how to spend the money. 

Jennie Spotila: [00:29:05] Yeah. Not enough money. So there aren't enough researchers because there aren't enough researchers. There aren't enough applications going in, which means there isn't enough funding. And one of the things that we have heard repeatedly from NIH is we need to have more applications in order to give more funding.

NIH tends to fund. Usually around 15% of the applications that come in and that's true for Emmy applications as well. The success rate seems to be about the same, but how do you attract people? To work on a disease that historically has very little funding. The only way to do that is to put out a call for those yeah.

Applications. And that's something that we've been demanding from NIH for 13 years. Now, the last time they put out a general call, y'all saying, we've set aside money for you. Was in 2006 and then in 2017, they set aside money for these research centers. Um, but that's it. And even though Congress has said, they would like to see those kinds of funding mechanisms.

And we have been demanding that for so many years and I H moves really, really slow. And there seems to be institutional memory about. What this disease is, is it legit? Um, is it psychological? And so trying to shift, it's like trying to, you know, turn a cruise ship, trying to shift the mindset and H to treat the problem with urgency has been really, really good 

Beth Silvers: [00:30:41] is most of the advocacy around this being done by people with the diagnosis 

Jennie Spotila: [00:30:47] it is, and that's another one of our challenges.

People who get a diagnosis of chronic fatigue syndrome, which is usually what people will be labeled with in the United States, does not have your family and friends rally around you again, because there's this perception that the disease is psychological. At one point, it was referred to as yuppie flu.

There is the erroneous perception that it is a white woman's disease, as opposed to a. Disease that strikes everyone. Um, for all of those reasons, when people hear chronic fatigue syndrome, they tune out and a lot of people will lose the support of their family and friends. They're unable to work. So then they rely on, you know, stability, safety net to the extent that one exists and become very isolated.

And so we do a lot of this work ourselves, and I would say having done it for 25 years in the last five years, we have pulled together in a way that we have not before. And we've started attracting more healthy people. To help us, uh, and also mobilized more people who didn't know how to connect with this community before and, uh, trying to get them involved too.

Their voices as well has been a very positive trend, but again, yet to bear too much fruit for us. 

Beth Silvers: [00:32:13] Tell me about some of your advocacy experiences. What's, what's been the most effective way that you have found to reach policy makers? 

Jennie Spotila: [00:32:22] I think the most effective way for this movement in general has been to make a lot of noise and get attention and then get meetings with decision makers and that's something we've done better in the last five years.

There's an organization called Emmy action. Which has run a series of public events called millions missing, which refers to the millions of people missing from their lives because of the disease and the millions of dollars missing from trying to find scientific answers for it. And because we have mobilized better because there are more people involved and more press attention that automatically.

Makes it a little easier to get meetings with Francis Collins at NIH, uh, dr. Walter Cora Schatz, uh, at the national Institute of neurological diseases and stroke. Uh, I attended a meeting with an assistant secretary of health in, um, 2016. So those kinds of public events then puts. Pressure on the decision makers to meet with us and hear our concerns.

One of the things that I didn't realize, uh, before getting involved in this was the sort of back and forth between science and politics. It's easy to think that science is politics free and certainly NIH does what it can to keep. Politics out of grant review and scientific decisions, but it's inevitable that those two forces influence each other.

And. In order to get progress in science, you need the money in order to get the money. You need to be in politics to put the pressure on that because whatever Francis Collins pays attention to is what is likely to get resources. And that filters down to the head of all the institutes and all the program officers and so on where there's a spotlight like we've seen for the opioid epidemic, the brain initiative, and so on.

When there's a political spotlight that translates into money and money translates into the research, which eventually translates into help for the people suffering from this disease. But that's a long game. And like I said, I've been doing this 25 years and we've gone from 5 million a year to 12 million at NIH over the course of those 25 years.

And now I'm 51. Um, my life was very seriously impacted by this disease. I'm still home bound. I'm not able to work. I was not able to have a family. I lost my career, which I spent a lot of effort and money trying to secure in the first place. And, you know, the loss is for every person with this disease, the list is long people's lives are just stride and I've waited 25 years for meaningful progress.

And now I worry that I'm not going to see it in my lifetime. Certainly not. If we continue at the pace that we're at right now. When you talk 

Beth Silvers: [00:35:31] about the influence of politics, is that partisan or is it 

Jennie Spotila: [00:35:36] more 

Beth Silvers: [00:35:36] relationship based? Can you flush that out a little bit 

Jennie Spotila: [00:35:39] more? Yeah, it's hard to say. I think that it tends to be more relationship based.

Both parties. Support NIH. And in fact, in the last couple of years, if I remember correctly, NIH has not asked for major increases in its budget and Congress sometimes gives it to them. Anyway, there's pretty bipartisan recognition that funding for science translates into outcomes for patients. And we all want that everybody wants, you know, to be well, uh, from whatever health issues that they're struggling with.

And the only way to get that is with the money. So it's more about building relationships and communicating the suffering again. Something like cancer. People generally understand what that means or at least know that it's bad. Uh, and then something should be done about it. And most people can name multiple people.

They know who have either had cancer and survived or have lost their lives to it. But for diseases that are not as recognized, there's a very steep Hill to climb. So I've seen it happen with autism, all timers, Lyme disease. There seems to be a critical mass of attention that then translates into bigger steps forward.

And we need bipartisan support in order to do that, you know, the HIV AIDS, but DEMEC is usually pointed to as a major success for activism. And it. Definitely is. And again, that was communicating the impact on people and showing the suffering. And once someone understands the suffering that comes with the disease.

Usually they're motivated to do something about it. Um, but again, it's, there seems it's not just one or two people. You need a lot of people, both in Congress and in the federal agencies to recognize something as truly serious before big steps forward are taken. It sounds like 

Beth Silvers: [00:37:44] the process itself almost creates a weird sort of competition among diagnoses.

Jennie Spotila: [00:37:51] Yes. And. Uh, on the one hand, I don't have a problem with that because we should consider the burden of illness in making funding decisions. We should think about the impact on the economy of a disease like Emmy, where the federal government acknowledges. I think it's $25 billion a year in economic loss because of lost productivity and associated costs.

That should matter in NIH is priorities, but NIH has only consciously started using burden of illness as a factor within the last few years. And so it's definitely the case that whoever is screaming, the loudest and getting the most attention is likely to get the most money. Or the low hanging fruit diseases that are relatively easy to figure out.

Um, You have one infectious agent, you identify that infectious agent, then you look for a cure for that infectious agent problem solved. And that's an oversimplification, but it's a lot easier than a disease like Emmy, which seems to have no single trigger among all patients. No single course of illness.

Um, No clear, fast progression to a more serious disease state that is across all patients. It's a lot more complicated, a problem to unravel and it's tempting. I think. To focus on the problems you think you can solve and stay away from the problems that are really, really messy. And I think that's just human nature.

Uh, so we've been at a disadvantage. Emmy has been at a disadvantage for. 30 years and other diseases have benefited from our disadvantage. There's been more money available for another disease because the money isn't being spent on us, but the cost of that in terms of human suffering and the cost to the economy.

To me makes it clear that we need to correct that there needs to be a different distribution of resources, uh, because this is an extremely serious and expensive problem that not enough has been done to even scratch the surface at solving it 

Beth Silvers: [00:40:23] is best position in our current structure to really make a difference on how this money is spent.

Jennie Spotila: [00:40:30] I think on the federal side, it is the decision makers at NIH. Many of whom, no know that this is a problem, but if not exerted their political capital to raise its profile and invest more money in the system itself, looking at the whole ecosystem of scientific research. The scientists, the researchers also need to step up and IHS, right?

They can't fund an application that isn't sent to them. They can't fund an application that is sent, but isn't very good. So there's a feedback loop of NIH saying we're interested in the scientific community saying great. Here's my idea. Fund my idea. And. It's very challenging as a patient and especially someone who is homebound like me.

I can't go around to the universities in my area. I can't identify people who maybe would be interested and do sort of that evangelism scientific evangelism to recruit people. You know, I think a lot of patients sit and think, what the hell are we supposed to do? We're the ones who are sick. Why does it fall to us?

To agitate for this change, especially when there are so many people who understand the toll of the disease. Why is no one picking this up and running with it? You know, someone who who's better placed to make a difference in a short period of time. And I don't have the answer to that question. I've, I've wondered about that for a long time.

Where are the barriers to really making progress? Uh, and how do we overcome them? It's not all on the federal government, but it should not be on the patients themselves. 

Beth Silvers: [00:42:25] We're going to hear from Angie now who offers a completely different perspective as she is advocating for her son in the context of schooling.

So, first 

Angie Ferguson: [00:42:35] of all, my son is four. My son's hand is four. He was diagnosed in January with high functioning autism. So he's, he's verbal and he's in a regular classroom. He goes to a public preschool. 

Jennie Spotila: [00:42:48] Uh, 

Angie Ferguson: [00:42:48] here in Covington. And one of the issues that we're running into is that his school is great. His teachers are wonderful.

The IEP meetings that I go to are very productive and. And I really feel good about them, but my son Ben was born three days before the school cutoff, which is August 1st. And I have been told sort of unofficially by school administrators that because of the federal funding they receive as a public preschool, there is no wiggle room for having my son repeat another year of preschool.

He has to go to kindergarten next year, unless I went to take him out of public school and. Pay for private school. So that is something that my husband and I are sort of wrestling with right now and trying to decide what we're going to do. 

Beth Silvers: [00:43:42] Have you seen other areas where there is federal support, which is helpful, but there's a lack of flexibility around what that support allows that that kind of keeps it from being as helpful as it can be for your family.

Um, 

Angie Ferguson: [00:43:57] that's really the major area where federal funding sort of touches our lives. We run into because we live in Northern Kentucky and we get a lot of our services. For instance, I children's, we sort of run up against this issue of we live in Kentucky. Kentucky has far less funding set aside for autism services.

Ohio does. And so would we go to Cincinnati? Children's they say, Oh, if you live in Ohio, we could offer you this, but Kentucky just doesn't offer it for instance, in Ohio. Um, they actually set aside money for children with autism to go to parochial schools because of the issue of are they meeting their IEP goals?

Should we move them on those types of things? Kentucky doesn't offer me anything like that. So. That is really the, the education portion is really the major touchstone for us. 

Beth Silvers: [00:44:54] You have learned in the process of having a son with this diagnosis, 

Angie Ferguson: [00:45:00] where do I start? I think the biggest change to just my overall life outlook is that my son looks at life at the world in such a different.

Way than I do. And it has completely shifted my paradigm. My son is a very concrete learner, mr. Black and white. He does not understand nuance. And so it is just totally shifted how I see the world, because I try to imagine how he sees it through his eyes so that I can help him navigate life. And so that has been the biggest thing.

Um, Just aside from all of them were real discovering all of these services that are out there. I of course live in a very urban, suburban area and I have all of these services, whether they be in Cincinnati or. Here in Kentucky that are, we have access to and that I never knew existed. So that's, that's really been the biggest thing.

Beth Silvers: [00:46:02] Most helpful to you in learning that world. This is something I think about a lot with friends who are in similar situations, like how do, how do you know where to start on figuring out what's available and how do you not only access what you need for your son, but. But keep yourself in a space of learning about this too.

Like, 

Jennie Spotila: [00:46:21] are there good resources for you 

Beth Silvers: [00:46:23] as his mom? 

Angie Ferguson: [00:46:25] So Cincinnati children's, they connected me with their social worker, our developmental pediatrician at Cincinnati children's has a social worker assigned to her and I can call her at any time and say, I'm looking for this service. Um, and she. Came to me initially and said, here are all the things, here's the wide spectrum of things I can help 

Jennie Spotila: [00:46:47] you with.

Angie Ferguson: [00:46:48] And, um, sort of started from there and talked about some of the funding here in Kentucky that we would have access to. But, um, that is really, it was really the biggest sort of door opening for us, but just on a, um, Sort of more one-to-one personal level. Oddly enough, Facebook has been wonderful. There are so many adults like either adults with autism or parents or children with autism support groups on Facebook.

I have a very close personal friend whose son was diagnosed with autism. Um, he is a little bit more, um, handicapped, I guess I would say I hate saying that word been my son. Um, but they, it, my personal friend has just been. That's just the people that we lean on. He and his wife are just, when things, we can't make sense of something.

My son had a very serious meltdown over the summer and I had to leave work and go home and, and tackle that problem. And he was my first phone call and his, I mean, he was just amazing. And just talk to me through it. And so just sort of building our village, just. With our own family and friends, but then going to the bigger places as Cincinnati children's, there's another agency here in Northern Turkey called hope bridge that helps with that.

Um, and then even just another layer beyond that, going to the internet, like Facebook and things like that, and researching or talking to other parents, or just reading the posts of what other parents are going through. I think he'd be like, yeah, I've been there. I know exactly how that feels. So it's just sort of.

I feel like we've had to sort of insulate ourselves all these layers of help and support. 

Beth Silvers: [00:48:30] And now we're going to hear from Nina. When I talked with Nina, she had just begun a role in disability advocacy. And I think it's so important to include her perspective because it's an example of asking good questions and being open and learning the limitations of your own perspective.

Even when you are completely immersing yourself in this world, like realizing disabilities. Aren't one thing. They are the total of the human experience. And I think Nina really paints a beautiful picture of that. 

Nina Coyle: [00:48:59] So yesterday was my first trip ever to Capitol Hill. So quite a day, um, to be in a space where policy is being created.

Um, and really I was there as a part of a national conference for, um, Just a network of university centers that are focused on disability work. And our job there was to meet with our legislators and their staff, um, to specifically highlight, um, recent accomplishments in the area of disability legislation and just the ongoing work.

And as someone who is new to this field, um, What struck me and what continues to be something, then I'm just mulling over as the value of individual voices and individual stories when it comes to experiences around disability, um, in my area of work, particularly regarding healthcare. Um, but also. I don't know, like I just really paid attention to how, and the staff members who we were meeting with were really focused on getting personal impact stories of folks who are living with disabilities, have family members who are living with disabilities or are being trained to work in these communities.

Um, and I was really encouraged by. Their attitudes and wanting to hear about what's difficult, um, and how they can be helpful. And, you know, also just there, I don't know, I guess their excitement and to celebrate recent wins. So I will say I. I spent a lot of this last week, learning about disability policy and disability legislation from a wide array of topics.

We, I sat in sessions learning about, um, transportation and disability and transitions from. Um, education into the workforce. And there's a lot of really incredibly the complicated talk around the challenges that still face folks with disabilities and being able to access competitive, integrated employment, um, which is an area that I did not know much about, um, until this past week.

And. You know, I know this might be kind of all over the board, but I am just spending a lot of time learning about how disability policy and disability legislation touches everything and trying to figure out where my specific line of work and training, working really closely with. Um, future healthcare professionals can play a part in providing better access, providing more evidence based care and providing resources directly to individuals with disabilities and their families across my state and across the nation.

Beth Silvers: [00:52:12] I think that's encouraging to hear about that focus on individual experiences. It also kind of makes me nervous because. Disability is such a broad word and means so many things. And I wonder how you think about 

Jennie Spotila: [00:52:25] this approach 

Beth Silvers: [00:52:25] of delay, disability, touching everything. When you are tackling such a diverse population of people 

Jennie Spotila: [00:52:33] who 

Beth Silvers: [00:52:33] you want to serve in everything that you're 

Nina Coyle: [00:52:36] doing, right.

It's, it's hard. Um, and that is a space that I am kind of daily. Just trying to sit in the tension and also seek out just the specific impact that I can have in my work. So, um, with our training program, we focus in on developmental disabilities, um, which kind of broad speaking, it's a. The definition is more like a group of severe conditions that are due to mental and physical impairments and lead the folks who have developmental disabilities to encounter issues with major life activities, like language and nobility and learning and independent living.

So where I really try to focus in our. Just gaps and training for professionals around this area and then, and helping provide, um, policymakers with education when they, um, have specific asks. It's not, you know, it's not certainly not a perfect solution. Um, and I think what I have to bring to the table when it comes to approaching this really.

Um, wide ranging and complex set of issues is, you know, my. My own personal skills and my, the resources that I have access to. So I'm really focused on creating spaces where professionals from several different backgrounds, um, you know, whether they be genetic counselors or medical students, dentistry students, speech and language pathologists.

Um, providing them the opportunity to come together and talk about how to care for the disability community. Um, within those contexts, elevating the voices of individuals with disabilities and family members of folks with disabilities. Um, and then with that whole group, then providing opportunities for those professionals and those individuals and those family members too.

Interact with policy makers to be trained in how to educate others. And so it, like there is this kind of back and forth tension and it can feel overwhelming sometimes to try and figure it out, you know, which, which way is the best way in. And I guess my approach to that outside of just. You know, what I, how I'm directed in my job is also to, to listen to disabled leaders, disabled advocates, um, a group of self advocates.

Um, and that is, you know, an audience that I am always seeking. Well, not an audience. That's a group of teachers that I'm always seeking to interact with, whether it be on social media or at these conferences, um, you know, just taking every opportunity I can to. Fill my feeds and increase my personal interaction with individuals with disabilities and hearing about what is impacting them the most at any given point.

Wait, 

Beth Silvers: [00:56:00] so you talked about employment as being one of the issues that 

Nina Coyle: [00:56:04] you 

Beth Silvers: [00:56:04] are recently focused on. Can you tell us more about. What you see as a legislative role in ensuring greater 

Nina Coyle: [00:56:12] access 

Jennie Spotila: [00:56:12] to good 

Beth Silvers: [00:56:14] employment for individuals with disabilities? 

Nina Coyle: [00:56:17] Yeah. So one of the conversations that came up over and over again, um, at the conference I recently attended was around competitive integrated employment, which I mentioned earlier, basically looking to legislation to help provide.

Um, solutions so that people with disabilities are no longer segregated and, um, sheltered workshop where they're not being given the same opportunities to pursue employment that is employment of their practice Prince, um, in a dignifying way, as folks who don't have disabilities and there are ongoing kind of policy efforts around that area.

And then adjacent to that. Um, there are provisions in place policy right now that allow for individuals with disability to receive and said minimum wage. And that was news to me. That is not something that I can sit come true, you know, every day. Um, certainly. And so those are kind of the two areas that.

I have been recently exposed to where people are, I'm doing more work and I, you know, I'd be happy to send you kind of follow up resources on those, um, that I have access to specifically when it comes to, um, ongoing legislative initiatives around employment. 

Jennie Spotila: [00:57:45] Can 

Sarah Stewart Holland: [00:57:45] you talk 

Beth Silvers: [00:57:46] about hospitals and specifically kind of your work 

Nina Coyle: [00:57:50] with hospitals to 

Beth Silvers: [00:57:51] think more 

Nina Coyle: [00:57:52] about greater.

Beth Silvers: [00:57:54] Access and inclusion. 

Nina Coyle: [00:57:55] So I work with trainees, um, or students who are going through their graduate level, like professional education. So I'm working with medical students, I'm working with genetic counseling students, um, nursing students, all sorts of folks who are in and out, um, of providing services and hospitals.

And, um, our work there is really to. Encourage what we, um, focus on as interprofessional services being provided to individuals with disabilities and their families it's really, to us, um, that healthcare providers are not working in silos and we're able to, um, learn from the different types of trainings that each of them bring to the table.

And, um, Understand where they can help just provide me more cohesive. Um, and, um, yeah, just the best care possible for, um, individuals with disabilities and their families, you know, so we do a lot of training via case study, um, for our students and. They're able to sit in these round tables, look at case studies and offer different supports and tools and resources.

They, each of their professions provides to 

Jennie Spotila: [00:59:28] help improve, 

Nina Coyle: [00:59:29] um, the lives of individuals with disabilities. And you know, that work is carried out and my work is carried out outside of the hospital itself in a classroom based setting. Um, and the hope is that. These future healthcare providers can take the lessons that they learn about collaboration, about, um, learning from other professions into clinics, um, and hopefully work also in interprofessional clinics where they can lean on, um, other expertise.

And then we also, um, I want to be sure to mention that along with bringing, um, Healthcare professionals from different areas of study and discipline into the same room. We also consider South advocates with disabilities and family members with disabilities. Um, and there's training settings to be able to speak from their own individual lived experience, expertise, and provide that education for our healthcare professionals and training so that, um, you know, the voices of.

The people who we're trying to serve are being included, um, at every level that we possibly can. 

Beth Silvers: [01:00:47] What has surprised you most, 

Nina Coyle: [01:00:49] as you have started 

Jennie Spotila: [01:00:50] getting into this world? 

Nina Coyle: [01:00:52] I think what's been surprising. Um, As really it's the day to day impact as beginning to work in the field of disability. There's so much that I am learning and becoming aware of.

And frankly, there's a lot of my own privilege and access, um, that I, and beginning to see and whole new ways, um, You know, I was walking around DC during this conference and, you know, before I started working in areas of disability, I wouldn't pay attention to the ways, um, that I'm getting around as much as an able body person.

Um, and so I'm paying attention to things like whether or not there are. Auditory signals at crosswalks, whether or not the buttons to press to cross the street are even accessible for someone well, for all people. Um, whether it's, you know, if someone's using a mobility device or not. Um, when I am on social media, I am paying attention to things like captioning and, um, text descriptions of images and.

Um, the absence or presence of those supports, um, for folks when it comes to you. Just receiving the same information that I am day in and day out. You know, I think of all of the positions that I've held thus far in my career. Um, I've always taken a little bit of work home with me, but I am finding that particularly in this area, I am constantly learning and seeking to learn more or about how to be a better professional in this field and a better.

Um, advocate and ally in this field, um, kind of off the clock because it, well, my work focuses really specifically on the healthcare aspect of disability, access and care. I'm just finding that. You know, and everything I'm involved in, I'm beginning to ask questions about access and, um, what my role just as a person is in those spaces.

So, um, you know, I think I had no idea when I stepped into this role a few months ago that so many of my lenses, um, And life would be shifted. And I'm really grateful for that too. Um, because I think it helps me be a better learner and it's impacted just about every space that I'm involved in. And that that's something that I'm really grateful for.

Sarah Stewart Holland: [01:03:55] I was just really struck in these conversations, by what each woman wanted to share with policy makers and really all of us, the broader community. 

Nina Coyle: [01:04:05] One of the lessons that I feel like I'm learning in this area of work. And one of just the tools and resources that I've found really helpful. And I'm in practices in that space has been to continue seeking out.

Um, The voices of disability leaders, those voices as are out there, they, um, there are so many conversations that people can get involved in online or in person to begin to understand how well to begin to understand where the priorities of people. Who are disabled and are when it comes to legislation. I, I have found Twitter to be incredibly helpful in finding resources around those spaces.

And, um, if people are interested in learning more about disability, disability policy and addressing all sorts of accessibility gaps, um, I would just say, you know, go for it, dig into the learning. You'll probably find that there's even more information out there than you might expect. And, you know, for folks like me, there's a lot of catching up to be done.

Beth Silvers: [01:05:22] How can people 

Jennie Spotila: [01:05:24] who 

Beth Silvers: [01:05:24] do not have a diagnosis, 

Jennie Spotila: [01:05:26] but care 

Nina Coyle: [01:05:27] about this issue 

Beth Silvers: [01:05:29] perhaps because of loved ones or just 

Angie Ferguson: [01:05:30] hearing your 

Beth Silvers: [01:05:31] story and are moved by it. W w what does it mean to be a good ally? 

Nina Coyle: [01:05:35] I think, um, 

Jennie Spotila: [01:05:36] in, in this circumstance, I think allyship with people who are sick and people who are struggling with disabilities starts with believing people.

When someone says I am too sick to fill in the blank or I'm disabled, I can't. Fill in the blank, or I need this accommodation believe us because we don't lie about this. We don't like being sick. We don't like being disabled. We don't like needing accommodations. So if someone says, I can't see you today, I'm not feeling well, believe them and accept that they're speaking from a place of truth.

Paying attention to each other and trying to understand each other is really the beginning of allyship. Before you even get to the stage of maybe making a phone call to a Congressman on my behalf, uh, you have to understand and believe me first and that's, I think, where it really begins. 

Beth Silvers: [01:06:45] When you think about what you would like for policy makers to know about your experiences, what comes to mind?

Angie Ferguson: [01:06:53] Sam moving onto kindergarten and education. And as I'm talking to his teachers and I'm talking to my own family, my parents were both educators and things like that. And all I can, I just keep coming back to this. What are we even doing here? I mean, I have appearance and telling you to school. This is not in my son's best interest and you in return are, are telling me, I'm sorry.

Our hands are tied. If we don't follow these federal guidelines, we don't receive our federal funding. And so I don't blame the administrators, but I think I would want policymakers to know that we cannot paint with broad strokes, education, or medical services or anything like that when it comes to children with autism, because.

There's a reason why we call it the spectrum, no two children exhibit or manifest the symptoms of autism in the exact same way. And so I would want policymakers to know that this diagnosis is so broad. That one policy or one set of policies isn't going to cut it. It has to be on an individual basis. And I think there are a lot of diagnoses out there that are like that.

Not just autism. I just keep thinking I'm just one parent with one child. And I feel like I'm kind of being steamrolled by this federal system. I can't imagine that I'm the only person out there that feels this way. There has to be other parents that think. Why would we do this? This is not in the best interest of my child.

And I'm telling you that. So that's, that's really, I just keep coming back to that. When I think if I were to have a conversation with a person of, from Congress or something like that, that's what I would want them to know about my 

Nina Coyle: [01:08:42] situation. 

Jennie Spotila: [01:08:43] When you think 

Beth Silvers: [01:08:44] about other parents in the world, parents of kids who are going to interact with your son, people who are going to be teachers to your son, people who are going to be employers of your son, what do you want them to understand about neurodiversity?

I want them 

Angie Ferguson: [01:08:58] to understand first and foremost, that, um, just on a more realistic every day basis that my son has a speech delay. So. When you talk to my son, you don't get an emergent, immediate answer. Sometimes you don't get an answer at all. We're working on that. I want them to know that my son sees just life in general, differently than that.

And that's a good thing, not a bad thing. My son is very inventive. He's very creative. And even though he sees the world, he doesn't see those shades of gray. He is a, you know, the wheels are always turning and I would want them to know that that. Neurodiversity makes all of our lives richer. It's not a handicap, you know, tell anybody not just the policy maker, one thing that they could do.

Yeah. If they don't have a child that we thought to them, or they don't have a family member or a friend with autism, I would just say, if someone does come to you and tell you that my child has autism, believe them, because I was amazed how many people in response, family and friends, coworkers, and response said, I'm just not sure that that's right.

Jennie Spotila: [01:10:07] I think 

Angie Ferguson: [01:10:07] he's just a typical three year old boy. And 

Jennie Spotila: [01:10:12] I can't 

Angie Ferguson: [01:10:12] begin to describe how insulting that is because I didn't just wake up one day inside. Oh, my son must be autistic. I'll just start telling people that, I mean, it was a lengthy on a six month process to get that diagnosis and view the coworker.

You have a friend or even a family member. You see what I see as every day getting up. Taking care of my son, getting him to school, getting him back from school. What, you know, I mean, you don't see what I see. So just believe me when I tell you that you can keep those thoughts to yourself. I don't need to hear them.

Jennie Spotila: [01:10:48] I 

Angie Ferguson: [01:10:48] think that's really what I would want anyone to think about when someone tells them that someone they love has autism. 

Beth Silvers: [01:10:56] What do you want policy makers to understand about living with blindness and how they can be helpful and supportive of this community of people? 

Mary Sue Welch: [01:11:05] I can tell you that blindness is the most feared of any condition.

Even to the point of people saying, if I lost my vision, I would die. I would rather die. And I'm very concerned because right now I believe that we have in place. Due to our leadership, I platform of hatred, of being old. It's okay to say what you do not like. I think that, uh, policymakers should not make fun of those of us who see in a different way.

And. We definitely do we see with our hands, we see with our ears and some of us even can tell where we're going simply by the way, way that the air hits our faces. We know. Where we are, we need to turn, we need to stay straight, that kind of thing. And I just believe that encouraging people to not be afraid of those of us who are blind because of their fear that it could happen to them.

We would be a long way toward improving attitudes concerning the blind. 

Beth Silvers: [01:12:35] As I'm listening to the talk, I'm thinking that that ability to see in a different way would really benefit us in positions of leadership. Do you see active efforts to recruit people, to run for office to represent that different way of seeing?

Mary Sue Welch: [01:12:50] No. I have heard one thing that, and this isn't about leadership, but I have heard about one thing that has just absolutely thrilled me to death. And that is that the TV show, this is us. They actually. Have a blind person play in a blind person. I mean, a real blind person that I'm so pleased about that because in so many different areas, it's not blind people being blind people.

It's somebody pretending they're blind and they don't know how, I mean, I don't care how much information they get and training. They get not it's who we are. And yeah. I would like to see more blind people get to be blind people and be important. 

Beth Silvers: [01:13:40] What do you want people who. Are not blind or do not have anyone they love who is blind to know about how they can be supportive and maybe not just supportive, but also uplifting and respectful and valuing that perspective that you're describing.

Mary Sue Welch: [01:13:59] Read a book over the weekend, a 60 essays that were written by people with disabilities and. They weren't all blind, but they all mentioned some of the same things. When I go to a restaurant very often, the server will ask whoever I'm with that. They can make eye contact with what I want to eat. More recently, I've been able to find wait, staff that will come and touch my shoulder and say, what is your order?

Which is just such a tiny thing to do. Um, and I, I think that people would be helpful with those of us who are blind, if they did not think automatically that we are unable to, um, Answer questions. Use the computer. Just become a little bit more educated by being with those of us who are blind. I understand that it is fearful when people cannot make eye contact.

That is very. Difficult. And I understand that. So I always try at least to look in their direction so that although my eyes are closed an awful lot of the time, I'm making the effort to be with them all. So think that it's nice. If you're shopping, if anybody that's helping you shop, whether it be working in the store store or your friend that went with you.

Okay. To allow you to touch things and make observations about what they are. It's the smallest things in life that makes such a tremendous difference. 

Beth Silvers: [01:15:59] What have I not asked you about that you think is important? 

Mary Sue Welch: [01:16:02] We just like to tell you that this has nothing to do with being blind, except that I have had a very normal life, not all blind people, right?

Are the same, just like all sighted. People are not the same. Some of us can do more than others. Some of us are more capable than some of our cohorts, but I just think it's important for people to understand that before we are blind, we are people. And I think so often that. When I meet people and have spent time with them.

My great hope is that when we're not together, anything anymore, they'll think, Oh, Mary Sue said this and it was so funny and not. Grace is blind. And she said this, and it's so funny. I would like them to think of me first. So I try very hard to put myself out there and I realized that, okay, started people are very often not going to come to me, me and.

Even when it's difficult, I inner conversations and try to bring people to talk to me so that I can have more friends and they can too. 

Beth Silvers: [01:17:31] Thank you. Nina, Jenny, Angie and Mary Sue. For the time that you spent talking about this with us, thank you for allowing us to share your stories. Thank you to all of you for being present with these stories.

Sarah. What are you thinking about outside of politics? 

Sarah Stewart Holland: [01:17:53] I'm thinking about multigenerational podcasting. Okay. So the other night my youngest child says I want to watch cats. Let me, you share my husband's private shame with our entire audience. Nicholas was so desperate to watch cats that he paid $20 because when it first came out, you couldn't rent it.

You could only own it. So we own it. We own cats, the musical. Okay. And we've already watched it and feel this was to watch it again. And I became, we should watch it every week for a year. And do a podcast, but apparently that's already a podcast where they pick like one awful movie and they watch it every week 

Beth Silvers: [01:18:37] for a year.

Sarah Stewart Holland: [01:18:39] And so then they decided, well, maybe we'll watch more than one podcast. And then they started workshopping names. I think they settled on my kids, hate your movie. And I think they're going to do it. I think they're like the boys are excited about it. Felix and Amos asked, particularly Felix asks every day.

When are we doing the podcast, particularly because Nicholas said there should be a feature on the popcorn and candy. So now I think he just really wants to get to the popcorn and candy part, but I don't know, kind of excited. Yeah. I think it will be funny. I think it'll be funny to hear an 11 year old, a nine year old and a five-year-old say what they loved and hated definitely about cats.

And I can't wait to see what they pick next. So it's the podcast bug has spread to the rest of the Holland family. 

Beth Silvers: [01:19:25] Don't tell my daughters, Jane, tell me she wanted to start a cooking podcast once. And I said, that sounds great. Let's do it. And she said, okay, well, like what do we want to cook? And I said, well, you have to think about what a podcast is.

So if you want to do a cooking podcast, it's going to take a whole lot of preparation and work. You can't just make something and show it to people. You know, we have to think about it. And we started talking about what the production would look like. And she was like, nah, you know, I don't think so. I don't think I want to do that.

Sarah Stewart Holland: [01:19:53] I'm good. But I bet you, if I invited Ellen to be on a podcast, you couldn't talk her out of it. If your life depended on it, 

Beth Silvers: [01:19:58] the world is going to have Ellen, whether it wants Ellen or not, but the situation with Ellen. So did they have a name for this podcast? I'm excited. 

Sarah Stewart Holland: [01:20:07] Yeah. My kids at your movie, 

Beth Silvers: [01:20:09] you said that my kids hit your kids.

I love that. I love that. I think this is really fun. I'm excited to hear. Nicholas has podcast host. 

Sarah Stewart Holland: [01:20:16] Well, you know, this podcast was Nicholas's idea. He was on me, on me, on me to start a podcast. He's a big podcast listener. One time I came up with the most perfect idea for a podcast for him, but then I forgot it.

And I have never been able to remember it. And it was really good. And he started, he tried, he recorded one test episode with a friend of his, about gear. Cause my husband loves gear. I still think this is a good one because Nicholas is cheap. So he's, he's looking like the cheapest way to buy the gear. My friend Todd is.

A spender. So like whatever purchase you've made, he will make you feel fine about it. So I thought it would be fun to have the like, purchase everything. What's the minimum you need to purchase in conversations about gear. And they all kind of like camping gear, wine gear. So Garger, like there's lots of options there.

I thought it was a good idea. Um, but they were both are too busy. I think really they make it happen because as you and I know. Oh, there's a lot of there's a lot and to a podcast, but you know, when there, when you're the legal guardians of your cohost, I'm, I'm assuming the coordination will be a little bit here 

Beth Silvers: [01:21:14] that probably helps them.

Yeah. And how lucky they are to have you now, how hands on are you going to be in the creation of this pond? 

Sarah Stewart Holland: [01:21:21] They asked that today, Felix is like, Are you going to be on our podcast? And I was like, you know what? No, I'm not. I have enough. 

Beth Silvers: [01:21:30] I 

Sarah Stewart Holland: [01:21:30] have, I love a microphone and I love the sound of my own voice. And even I am tired of myself by Friday.

Beth Silvers: [01:21:36] Well, speaking of Ellen for a second, Ellen walks in my room the other morning. I have. Just gotten out of bed and rolled out my yoga mat and like got myself on the mat to start practicing for 15 minutes. As I do at the beginning of every day. And Ellen walks in my room, just opens the door in her little PJ's with her crazy hair and looks up at me and says, tearfully, this is not how I wanted it to be.

Sarah Stewart Holland: [01:22:05] Ah, that is a mood that is a mood Ellen. 

Beth Silvers: [01:22:11] So as I probe this a little bit, I found out that what Ellen wanted. How she wanted it to be, was she believed she had slept in and that all of us should be dressed and downstairs eating breakfast with her breakfast, waiting for her. So she could roll up to the table and have her breakfast in her pajamas.

That's how she wanted it to be. And she was 

Sarah Stewart Holland: [01:22:30] ready for her to be the next Dalai Lama. I just feel like everything out of her mouth is true and reflective of how reality it should be in wise. And that she's speaking to the, this part of my inner being. 

Beth Silvers: [01:22:42] She was incredibly disappointed with us. And so the other conflict that we've had with her recently, and I'm just leaning into Ellen has her own sense of wisdom.

And there's not anything anybody can do it. It is with kindergarten. Her teacher would like us to be on every call with her. And her teacher would like us to watch every kindergarten video with her. And I understand why completely and I respect her teacher. And also that makes Ellen so angry that she cries the whole time.

She is so livid at the idea that we would need to sit with her or even hear what her teacher has to say, that she can't stand it. And so I've decided we just don't care. We're just going to have to defy the teacher on this one and let Ellen wear her headphones and do this on her own. And it's hilarious because the very things that had her in tears, angry, screaming.

I hate this. I don't want to do this. This is boring. This is awful now. She does with absolute delight, as long as we leave her alone to do it. 

Sarah Stewart Holland: [01:23:44] I love that. I love that. It's so true. I gave this talk to my friend. Leslie often gets mentioned front of the pod. I just look, I'm a real rebel. When it comes to public school, I'm probably are godless every teacher and principals, worst nightmare, because I'm just going to be real up front about this.

My bro vulnerable. Please don't email me if I don't like the rule. I don't know, buy it. Like I'm just. For real rebel, like the Gretchen Rubin model, if I don't think the role makes sense. I don't follow it. This may might mean I'm not really in any one at heart. I don't know, but there's just some stuff that I'm like, if it doesn't work and it makes everybody's life harder, don't do it.

Just don't do it. Like she was saying that they want the assignments turned in by 3:00 PM and I was like, or what. 

Beth Silvers: [01:24:29] Or 

Sarah Stewart Holland: [01:24:30] what we're going to go to elementary school, parent jail, please put Lee's. I'm sorry. And I'm sorry if that makes teachers lives harder. I'm sure that's probably what it is is the teachers are like, I don't want to be up all night collecting these assignments.

And I get that. And I think, you know, the, the problem with my, as my husband often points out my rebellious streak when it comes to rules is I'm only looking at the rules from my own perspective. I'm aware of this. And also there are just some things and I'm like, I can't, it's not going to work. I'm sorry.

I'm sorry. I'm really, really, I feel bad if it makes it better at all, but it's just not going to work. It's kind of how I feel about spelling tests. I hate spelling tests, so I don't really pay a lot of attention to them. Luckily, we have another parent who does in his household, but it's just like,

here's a sh a quote I haven't shared for a while on this podcast, but it's one of my favorite ones. I heard it once in an interview with Bonnie Wright and she said, you can only go as fast as the slowest part of you can go. And I love it. I think it is particularly true right now. I think Ellen understands the wisdom of that comment, that comment 

Beth Silvers: [01:25:36] all the way she does 

Sarah Stewart Holland: [01:25:37] in herself, in herself.

She knows it to be true because it is like, you can just, you can only do what you can do. You can only go as fast as the slowest part of you can go. And the truth is a lot of us are moving real slow right now and that's okay. 

Beth Silvers: [01:25:50] Here's the other thing, teachers can't win because there are parents like me and you.

Who are like, my kid is good. I mean, the truth is I don't need her to have assignments right now. It seems to me to be too hard for everybody that seems too hard for teachers. It seems too hard for us at home. I am not worried about Ellen getting behind. I'm just not. And again, tons of privilege equity issues.

I get it. But the truth of my life right now is that Ellen can read, she can write all of her letters. She can write all of her numbers. She can do basic addition. She has covered the ground of what most of kindergarten is. And so I'm okay with just like writing this year off in a lot of ways. I want her to do her best.

I want her to learn how to engage with other kids, really hard to learn that stuff over Google mates. And so to me, it does not benefit her teacher. Her classmates, her or us to have her crying because she doesn't want us sitting with her. To me, the best solution for everybody is to just say, I hear that rule.

And also you will get a better Ellen, if she is alone, it's not like I'm traveling to Mars. I'm nearby if she needs something. But. I cannot supervise every moment of this because it doesn't work for anybody, but I get that these things, I mean, teachers have kids who very much cannot read yet and can not recognize their letters and numbers, let alone write them.

And I get that. There are parents whose kids are probably as far along the path as Ellen. But saying, like, if we're going to make the schedule to get into our famous college, we're going to need you to pump up the workload here. And so they can't win. I feel so bad for wherever. Yeah. Every teacher is right now.

And I especially apologize to Ellen's for us breaking this particular role, but Ellen just will not have it. I mean, 

Sarah Stewart Holland: [01:27:48] you know, I'm pretty firmly entrenched on team Ellen. So I support her. I support that you all need to get up earlier 

Beth Silvers: [01:27:54] and get her breakfast ready. That role does not make sense to me. And I will not fall.

Sarah Stewart Holland: [01:28:00] Nicholas get listed. Nicholas can tell you all about that. Cause that's what I do on the weekends in particular. Like I want a special breakfast. And so, I mean, we talked about special breakfast on our social media feeds quite a bit. I believe in special breakfast. It's one of my sort of fundamental values as a human being, I think because I'm an only child and my mother, no shame, Alisa best spent a lot of breakfast as by myself, like eating cereal or pop tarts, although I still love Poptarts.

Okay. And so I think like, you know, there's, it sounds silly. It sounds like I'm being a brat, but there's like, listen, there's a lot of psychology for wanting a special breakfast and I believe Ellen also has those needs. 

Beth Silvers: [01:28:36] Ellen definitely has those needs people tell me on social media, occasionally that Ellen seems more like your child than mine.

And while that does hurt my feelings a bit, because I think I contain multitudes. There are aspects of Ellen's personality that very much are in line with yours. 

Sarah Stewart Holland: [01:28:53] Oh, that's okay. Because they also spend a lot of time calling you wise and I'm like, why? It's just cause I cry. I am not just emotional everybody.

It's easy to fall into that trap when we describe each other. 

Beth Silvers: [01:29:04] It is so true. It's so true. You are very wise, Sarah. 

Sarah Stewart Holland: [01:29:07] Thank you, thank you!

Beth Silvers: [01:29:09] As are many of you out there - all of you. Thank you for listening to this podcast. Thank you for spending time with us. We will be back in your ears on The Nuance Life on Wednesday and here again on Friday.

Keep it nuanced ya'll.

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