2 Episode results for "Beacon Hill Civic Association"

Reflecting On The ADA's 30th Anniversary

Radio Boston

15:15 min | 6 months ago

Reflecting On The ADA's 30th Anniversary

"Thirty years ago this week President George H W Bush signed the Americans with disabilities act into law. The prohibits discrimination based on disability making it. One of the most influential pieces of civil rights legislation since the Civil Rights Act of nineteen, sixty four for too many Americans. The blessings of liberty have been limited or even denied and the Civil Rights Act of sixty four. took a bold step towards righting that wrong but the stark fact remained. That people with disabilities were still victims of segregation and discrimination and this was intolerable. Thirty years later in the midst of global. Economic Upheaval Anna Global Pandemic, where are we on disability rights and equality, and what are the next frontiers joining us now to discuss this and to reflect on the thirtieth is Cortlandt towns, the Third Deputy Director of the Boston Center for independent living the nation's second ever independent living center Portland Welcome. Video Boston. Thank you. Also with us is Dr Sherri blouet she's a sports medicine specialist at Brigham and Women's Hospital where she directs the Kelly. Adaptive Sports Research Institute. She's a two time winner of the Wheelchair Division of the Boston Marathon Dr Blau welcomed Radio Boston. You pleasure to be with you. So we have an ADA generation. Now, we have thirty years of people living with this act in place. So let's just start remind all of us of its impact on our lived world workplaces are families. Yeah, I. Mean Right now because of the there's real access, you know real access to schools, jobs, transportation of sidewalks I. Mean It's easier for folks to forget that there was a time when town halls. Statehouses government buildings were accessible. People would go to vote and will not be able to get in. There was no guarantee of ASL interpreters for the deaf and hearing a guarantee of alternative formats for people that were blind or visually impaired. Even, local cities and buses and subways oftentimes we're not accessible. So we're not fully there yet is full access incomplete assets for folks but it's made a real difference children with disabilities our right to a full and complete education and the eighty generation kids understand that. Yeah I would agree cartland and I think I, think as well. You know the ADA has ensured that that people disabilities have their basic civil rights protected in that also have opportunities and a recourse of legal action if those civil rights aren't protected and I think that's a very powerful thing. Absolutely. has changed come willingly when when when the act was signed into law. Did change come quickly easily and on which frontiers and wear has changed been slow to come even though it's codified now. I say that. I can start I'd say that I I think it was incremental and we continued to see incremental change a for example, a lot of the changes in infrastructure that we enjoy now seems like ramps and elevators automatic door openers you know those things put into place overnight. So from the standpoint of physical access change has been very incremental and it's important. To know that the ADA is more proactive than retroactive. So she of an old building that you haven't renovated in forty years that wasn't built under the premise or under the protection of the ADA. It probably still isn't accessible and unless you choose to renovate it or get new permits to renovate it, you may not have to make it accessible. So early. We. Is that new construction comes online it comes online in a way that is accessible. So we've sweet seen slow culture change in that regard. Be, sure here. Now please go ahead. Shortly after president was signed the ADA until into law he also said, let these shameful walls of exclusion come tumbling down, and while many of those walls have come tumbling down there certainly continued to be many barriers, there's barriers to healthcare. To affordable accessible housing, and that's a huge win for folks with disabilities they may be accessed to jobs, but folks need a place to live, and that's still continues to be a huge problem, not only in Massachusetts but across the nation. Yeah. I'd also saying. Okay ahead, let me just yell let let me just ask this one it just following on specifically with two of you were just talking about it makes me think of the sorry five year long battle on Beacon Hill over sidewalk cutouts. The Beacon Hill Civic Association challenge that there was a lawsuit at took five years. Those cutouts weren't put in place until around May of twenty nineteen. So how do we think about those kinds of battles given what you've just been saying? Yet I think. It's a really important point and you know a lot of the a lot of that battles and wins as it relates to access have been hard fought over the years and there are still many ways in which you know the FDA has been very powerful and very impactful. But there are ways it's still limited to. For example, if you've have historical infrastructure that you feel wearing, you feel that making it accessible would. Be. Overly onerous changed. The sort of nature struck nature of the building than you can. You can get an exception to the ADA and that building can stay accessible and that's where there's some time some grey area in terms of you know what is historic, what isn't historic? What's required and said, the law still has some limitations Asians, I I still think you're still large swath of Boston that are completely very much inaccessible for people with mobility disabilities. Chair user and I when I go to Newbury street for example, probably only about maybe Max twenty, five percent of those businesses are accessible to me. I simply don't shop there on there are areas of our city that's one example but there are several others where people with disabilities are still largely excluded unfortunate because it would disabilities represent a very large market You know on the whole, it's twenty to twenty five percent of our population, and it's a real missed from a business standpoint for a lot of small businesses to not be accessible to the whole community. Absolutely. Cortlandt I've heard a number of arguments over the years the Beacon Hill case being just one that. Good design good responsiveness to the requirements of a good designed for people with for example, mobility disability really is good for everyone everyone benefits from those investments as Dr. Blau it just said we. Improve Your customer base, etc. So what do able bodied listeners misunderstand about the Ada about disability project protections about investments? In. Disability accessibility that people need to understand. Well I mean I think folks have to look at I mean the disability community is broad. Okay. There's many many different kinds of disabilities and not all of them are mobility related, but the the family of people with disabilities. Join Anytime. So there may be accessibility features that you may not need now, but that you may need later as a result of a change in your functional ability whether it be from age from a motor vehicle accident from a stroke or anything else. So if you look back at the concept that was once kind of a hot topic of livable communities, people can understand that curb cuts don't jus- assist folks with disabilities who may be using a wheelchair, but also mothers with strollers, people that are. Pulling, a shopping cart they're going to the laundry. You know elevators gesture for people who are unable to amputate, but it's also good for elders and people carrying packages. So I mean the argument of aesthetics will because this is historic and we liked the cobblestones aesthetics over accessibility has never been a valid argument for me. So we really want to have a an accessible society and access to the American dream for everyone. Then the communities themselves have to be not only physically accessible, but also pro grammatically accessible. Dr By wet were having this conversation during a global pandemic, the coronavirus is. Upon us, we've reported on this show racial disparities that are being laid bare by the pandemic and our healthcare system. How vulnerable populations are disproportionately vulnerable to the pandemic I know these disparities aren't new, but how are they intersecting with the disability community during this coronavirus pandemic? Yeah. Thanks for bringing up this important point. You know really what we've seen is that the pandemic has laid bare many gaps and disparities. In access to healthcare that prominently impact the disabled community. Similar to parallels be seen as it relates to the black community and people of Color. I think some some key examples of that you know for so many years our healthcare system and the way we run our services has. Put up barriers to people living independently in the community. You know it is easier for us in this country to institutionalize someone in a nursing home rather than to support them to live in their even though it's actually more cost effective to keep people in their home it of course, promotes empowerment and independence, and it's what people want. But. Because we've established newly promoted this this context of nursing home care as a primary means of care across our communities. We've now seen a really devastating impact. On our nursing home communities which have courses primarily people with disabilities. Of course, there's also inter sexuality here and that people with disabilities of color or people with disabilities who are poor are also more likely to live and institutionalized environments. So we really seen this confluence of how we've established our infrastructure healthcare infrastructure or the last several decades. Unfortunately. Predispose people with disabilities to being at much higher risk for acquiring the coronavirus covid nineteen, and of course, then being at higher risk for poor is related to covid nineteen I'd say a couple of other major gaps that we've seen is that you know we have we've not been we've not done a good job historically in integrating data collection about disability within our broader healthcare infrastructure. there's been some recent progress around elements of race ethnicity. Preferred language, etc. But disability still typically is not disability data is not collected that makes it very difficult for us to know how the community is being impacted whether or not. There are disparities and gaps and things like testing for people with disabilities whether people with disabilities are dying at a higher rate. You know I think I think the answer is fairly intuitive, but frankly, it's not data driven and that's a big gap because data is what drives policy drives funding, and that's something that we need to fix the future. That in mind. You'RE GONNA. Yes. Sorry. We have a delay. Of course. We're all three different places due to the virus that we're talking about right now go ahead and add your point there. Normally, as far as if you want some concrete data like right now in Massachusetts, we have over thirty two thousand people that are living in nursing homes right in his estimated that at least ten, thousand of those people's could be living in their own homes with the proper supports. So the onset decision of ninety nine ruled that unjustified segregation of people with disabilities did in fact discriminate because it violates the ADA and. We all know to stable housing, one of the key determinants of health. Right. But if you look at it in this pandemic as for the Kobe nineteen, the highest death tolls over forty percent are amongst people living and working in nursing homes that over forty, five, thousand people let of expired wide over fifty three, hundred people here in Massachusetts alone and folks are disabilities definitely represented amongst those underlying medical conditions so. If, you want to talk about again, real gate it immigration we have to be able to move out of nursing homes where they're more at risk out of these institutional facilities and move into the community where they can live independently access the American Dream Live fully, you know folks need some supports you know personal care, attendant support, living variety of them, but the key for our state really is a lack of affordable and accessible housing. All right. So we we have about two minutes left and I want to ask you both just briefly from each of you. If there were an ad a two point. Oh, law to come forward today what would be key provisions you'd WanNa see. Good question well, united say I think some key points for progress into the future? You know I think that that policy change in legislation and laws can change infrastructure seen some impact there but but but laws don't necessarily change. And so I think when we think to the future of what could have the biggest impact, we still have a lot of work to do as it relates to reducing or cultural barriers and stigma around disability understanding that disability is something that impacts frankly nearly everyone at some point in life and that when we think about inclusive services. We need to understand that it's not just for a small subset of people in our society, but it's actually for everyone So I I would probably try to tackle it from the standpoint of thinking of how how we can. We can continue to make progress as it relates to things like the built infrastructure, things like accessibility and communications, things like closed captioning and accessible websites. But how do we really get at the cultural change reducing stigma around disability and understanding that it's not a lesser way of living or something that needs to be devalued but actually part of the biggest life experience that we all face. Thank you for that. I have about a half a minute left. Please are good for me. I'd say education and enforcement a laws only as good as it is enforced and I think education about some of the things that we just talked about. Disability rights is human rights, disability rights, civil rights, and needs to be taught in school. People need to understand how we got to where we are. Now you know it was a bipartisan moved to pass the ADA, but it wasn't because there was some benevolent feeling. In fought for it. And that is Portland towns. The Third Deputy Director of the Boston Center for independent living and Dr Sherri blow at a sports medicine specialist at Brigham and Women's Hospital thanks to both of you for joining us to mark the anniversary this week.

ADA Boston Massachusetts Brigham and Women's Hospital Third Deputy Director Dr Sherri Dr. Blau Boston Center Portland President George H W Bush Sports Research Institute Wheelchair Division Beacon Hill Civic Association
Reflecting On Thirty Years Of The Americans With Disability Act

Radio Boston

48:49 min | 6 months ago

Reflecting On Thirty Years Of The Americans With Disability Act

"This is Radio Boston I'm John Deering, and we start today in the world of professional sports which has become kind of a bellwether for whether some normalcy is possible during a global pandemic, the number of New England Patriots football players opting out of the two thousand twenty NFL season due to the corona virus is now to six including star linebacker and defensive captain, Dante hightower and the red. SOX are off to a miserable start to their coronavirus shortened season jumping four of their first five games with one of their starting pitchers out due to coronavirus complications. The world is watching and not just the games to see who will win in the match up between professional sports and the coronavirus. So here to give us a read on what's happening is Radio Boston's Chris. Derek? Chris. Welcome. Back. Thanks for having me spoiler alert the news is not good on that front. Well. Yes. So let's start with football and I'm going to ask you about the Patriots players opting out the same question I've been asking. So often during this pandemic, how big a deal is this? So I'm going to answer your favorite question with probably your least favorite answer, which is it depends I think you mentioned? Were we're still in the midst of obviously of global pandemic and I don't think anybody really knows exactly what the future is going to bring. We've heard a lot of talk about a possible second wave in the fall and we're going to be seeing college students returning to campuses and a lot of places kids going back to schools in some places So I think it all of this discussion really depends on what the next few weeks in the next few months bring for us. We may not even have a football season. So with that huge caveat at the beginning of the answer. I would say on the field it is actually a pretty big deal for the Patriots, just because of the names. Of the players who have said they were opting out this year you mentioned Dante High Tower is basically the quarterback of the defense. He's the guy who's out on the field calling the plays for the defense moving guys around when they need to move. He's one of the true leaders on this team coach Belichick has made him Mr February for all of his big plays in the postseason in super bowls. you also Patrick Chung who's kind of unheralded. But I think a big contributor who never really gets the recognition he deserves for the kind of flexible. He plays on this team You've got marcus cannon who's been a pretty steady presence on the offensive line, Brennan? bolden. WHO's a special teams contributor. So you've got some pretty big name players who have said they will not be playing this year for the Patriots. And clearly players who understand what the impact is of opting out. So what are they saying about this decision about why they're doing it when they know what it's GonNa do to the team? Yeah totally, and it depends on the individual player. So in Dante hightower's case, he just had a child about a month ago and he says, he thinks it's the right move for. His family not to expose themselves to this kind of risk Patrick. John's wife is also expecting. You've also got a guy like marcus cannon who is a cancer survivor? He is in that high risk categories should he get the corona virus? So he's stepping away for health reasons, and basically the League is said, players can opt out for whatever reason they want they don't have to. Specify why anybody who ops out gets the one hundred, fifty, thousand dollars base salary at the beginning of the year and if they're in a high risk category like Marcus. Cannon, they would get three hundred, fifty thousand dollars at the beginning of the year and then the rest of whatever they would have been paid. This year basically gets rolled over to next year and. I did want note I think it's interesting. The first player who decided to opt out of this upcoming season and he did so literally after the League reach this agreement with players was Kansas City chiefs, guard Lauren do Rene Tardif who's actually a doctor and I just wanted to read a portion of the statement that he put out when he announced his decision. Being at the front line during this off season is given me a different perspective on this. In the stress, it puts on individuals in our healthcare system I cannot allow myself to potentially transmit the virus to our communities simply to play the sport I love if I am to take risks I will do it caring for patients. So pretty powerful sentiment there. So you said earlier, there might not be football season. Our players acting out all over is that what is putting a season at risk? Not yet per se. The Patriots, you mentioned have six players who have said they're opting out there only at my last count today twenty-five players, league wide. WHO said they're opting out? So there could be a couple of factors here. It's it's to guess at the internal motivation for these decisions but Bella check is known as a coach who's always trying to figure out an advantage however small, it could be possible. He said if you're going to opt out, tell me sooner rather than later. So I know and can figure out what to do the roster It could be there's no deadline for players to opt out. So it could be that we'll see more opt-outs as as the calendar moves along here. But right now, the Patriots have a large chunk of the players who said, they're not gonNA play this year. All. Right. Let's turn our attention. We Are Boston you WanNa talk about the red sox no I can't handle it. Come on. Don't do. All right. All right. Well, let's we're GONNA have to, but let's talk about baseball. Then for a second less than a weekend, the world's been watching the first pro sport really back. We've already seen the Miami marlins season postponed after seventeen people with the team have tested positive positive I mean that's like a team that can't even play in this carefully orchestrated short season. House. Baseball dealing with US how will they? I? Mean in the long term we have no idea. Again, we're in totally uncharted waters here. We've never dealt with anything like this. In the short term, they've basically put the marlins on hold until the third they put the phillies on hold until this weekend who had been playing the Marlins when this news started to break and they've had two already reshuffle the calendar because you've got teams like the Yankees and Orioles who were supposed to play against these. So you have to do all of this kind of puzzling out to figure out how to get as many. Games in his possible. Especially when you have to put a couple of teams on the shelf, you're already talking about a condensed calendar. So there's limited time. The League has already said there. Okay. If they get to the end of the year and teams have not played an equal number of games, they'll deal with that At that point, they would just ranked teams by winning percentage versus actual numbers of wins But really in the long term, if this becomes a problem more than one team has a huge outbreak like this. I. Don't know how they make it work. Yeah once again, a bellwether right for so many other things I. Think a lot of people are watching to see if they can pull this off. All right. I, just WanNa have seen a lot of people say if a multibillion dollar organization like baseball with thousands and thousands of tests being run over the course of a few days can't handle this. How does that change our thinking about college campuses and schools and things like that? I think you're absolutely right people are watching this pretty closely. Exactly exactly and we will continue to before we let you go though I must torture you we drive around the collar teams. Now, let's talk about the socks. The sucker nobly, it's been ugly and it's an issue that we talked about last year. We talked about in the off season it's pitching. They have no pitching starters or bullpens are they don't have enough anyway they have a pretty solid lineup which is interesting and. You would think that okay they should be able to hit their way into wins and maybe they will in the long run over the course of the season. But so far you can tell that the lack of pitching has really weighed on the offense I wanNA play a cut here from zander. BOGART's WHO's known as being incredibly upbeat. He's a real leader in the clubhouse. He's a guy who's always kind of giving positive affirmation of folks in get your next time. Let's go do this. This is what he said after the loss on Monday there's stuff. You know. Obviously. It's not just like one wrong. You know as a corporate and then they just find a way to add on some more before we can kind of get some going and gets up. And you see the video that goes with that he's shoulders slumped. He is depressed and you can tell this offense is putting extra pressure on themselves knowing they don't have the pitching to hold the other team down hitting a baseball is often called. One of the hardest things to do in professional sports. That's why if you can do it three out of ten times, you're considered really good and so if you have that added pressure of now, you have to produce runs or this team will lose that really starts to weigh on you makes it even harder. All right. So Chris, we've got a little less than a minute left. So let me just ask you because that was depressing. Rays of hope to leave us with with the restive titled Towns Pro Sports Teams I do have a little bit of hope, and this is something people are kicking baseball for not doing the NBA and the NHL have created bubbles players to bring their seasons back both of which will start towards the end of the week here I think that is a at least the best hope that we have to try to get some normalcy going in the world of sports. Baseball should have looked at it but I do think the NBA and the NHL are Gonna be able to return in that bubble assuming everybody follows the rules and they maintain those health. Restrictions we'll see if we can at least get through a couple of seasons. Alright radio. Boston's Chris, direct. Thanks. Thanks Roman thirty years ago this week President George H W. Bush signed the Americans with disabilities act into law. The Ada prohibits discrimination based on disability making it. One of the most influential pieces of civil rights legislation since the civil rights, act of nineteen, sixty four for many Americans the blessings of liberty have been limited or even denied. And the Civil Rights Act of sixty four. took. A bold step towards righting that wrong but the stark fact remained. People with disabilities were still victims of segregation and discrimination, and this was intolerable. Thirty years later in the midst of a global economic upheaval and a global pandemic, where are we on disability rights and equality, and what are the next frontiers joining us now to discuss this and reflect on the thirtieth is Colin towns, the third, deputy director of the Boston Center for independent living the nation's second ever independent living center Portland welcomed Radio Boston. Thank you. Also, with us is Dr Sherri Blau, it sports medicine specialist at Brigham and Women's Hospital where she directs the Kelly Adaptive Sports Research Institute. She's a two time winner of the Wheelchair Division of the Boston Marathon Doctor Blah at welcomed Radio Boston. Thank you a pleasure to be with you. So we have an ADA generation. Now, we have thirty years of people living with this act in place. So let's just start remind all of us of its impact on our lived world at our workplaces families. yes. I mean right now because of the Ada there is real access real access to schools, jobs, transportation walks. I mean. It's easy for folks to forget that there was a time when town halls. Statehouses government buildings weren't accessible go to vote and will not be able to get in. There was no guarantee of ASL interpreters for the deaf and hearing no guarantee of alternative formats for people that were blind or visually impaired. Even local cities and buses and subways oftentimes, we're not accessible. So we're not fully there yet as far as full access incomplete assets for folks but it's made a real difference children with disabilities how right to a full and complete education and the ADA generation kids understand that. Yeah. I would agree cartland than I think is I think as well. You know the FDA has ensured that that people with disabilities have their basic civil rights protected in that also have opportunities. A recourse of legal action if civil rights aren't protected and I think that's a very powerful thing. has changed come willingly when when when the act was signed into law did change come quickly easily and on which frontiers and wear has changed been slow to come even though it's codified now. I'd say that. I. I I'd say that I think it was incremental and we continued to see incremental change a for example, a lot of the changes in infrastructure that we enjoy. Now things like ramps and elevators and automatic door openers. You know those things weren't put into place overnight. So from the standpoint of physical access changes been very incremental and it's important to know that the ADA is more proactive than retroactive. So if you have an old. Building, that you haven't renovated in forty years that wasn't built under the premise or under the protection of the ADA. It probably still is an accessible and unless you choose to renovate it or get new permits to renovate it, you may not have to make it accessible. So early, what we really sees that new construction comes online it comes online in a way that is accessible. So we've seen slow culture change in that regard. For sure sitting here. No. Please go had. Yeah. Mean shortly after president was signed the a until into law, he also said, let these shameful walls of exclusion come tumbling down and while many of those walls have come tumbling down there certainly continued to many barriers there's areas to healthcare married to affordable accessible housing and that's a huge win for folks with disabilities they may be accessed to. The folks need a place to live, and that's still continues to be a huge problem, not only in Massachusetts but across the nation. Yeah and also thing. Oklahoma let me just yet. Let me just ask this one just following on specifically with the two of you were just talking about it makes me think of. Sorry Five Year Long Battle on Beacon Hill over sidewalk cutouts, the Beacon Hill Civic Association challenge that there was a lawsuit it took five years. Those cutouts weren't put in place until around May of two thousand nineteen. So how do we think about those kinds of battles given what you've just been? Yet I think it's a really important point and. A lot of the a lot of battles and wins as it relates to access have been hard fought over the years and there are still many ways in which you know the FDA has been very powerful and very impactful. But there are ways it's still limited to. For example, if you've had historical infrastructure that you feel when you feel that making it, accessible would be. Overly onerous changed the sort of nature struck nature of the building than you can. You can get an exception to the ADA, and that building can stay inaccessible and that's where there's sometimes some grey area. In terms of you know what is historic is distorted what's required and said, the law still has some limitations. Asians, you know I still think you're still large swath of Boston that are completely very much inaccessible for people with mobility disabilities. You know I'm a wheelchair user and I when I go to Newbury Street. For example, probably only about maybe Max twenty, five percent of those businesses are accessible to me. So I simply don't shop there you know and there are areas of our city. That's one example. But there are several others where people with disabilities are still largely excluded is unfortunate because it would disabilities representative, very large market You know on the whole, it's twenty to twenty five percent of our population and it's a real miss from a business standpoint for a lot of small businesses to not be accessible to the whole community. Absolutely. PORTLAND, I've heard a number of arguments over the years the Beacon Hill case being just one that good design good responsiveness to the requirements of a d a good design for people with for example, a mobility disability really is good for everyone everyone benefits from those investments as Dr. Blau just said. You, know you improve your customer base, etc. So what do able bodied listeners misunderstand about the Ada about disability project protections about investments in? Disability assess that people need to understand. Folks have to look at I mean the disability community is broad. Okay. There's many many different kinds of disabilities and not all of them are mobility related but the the the family of people with disabilities is one that you could join at any time. So there may be accessibility features that you may not need now but that you may need later as a result of a change in your. Functional ability whether it be from age from a motor vehicle accident from a stroke or anything else. So if you look back at the concept that was once Kinda hot topic of like livable, communities people can understand that curb cuts don't just assist folks with disabilities who may be using a wheelchair but also mothers with strollers people that are pulling a shopping Carter's they're going to the laundry. Elevators aren't just for people who are unable to amputate, but it's also good for elders and people carrying packages. So I mean the argument of aesthetics will because this is historic and we liked the cobblestones aesthetics over accessibility has never been a valid argument for me. So if we really want to have a accessible society and access to the American dream for everyone in the communities, themselves have to be not only physically accessible, but also pro grammatically accessible. Dr Blow at we're having this conversation during global pandemic the coronavirus is a it's upon us. We've reported on this show racial disparities that are being laid bare by the pandemic and our health care system how vulnerable populations are disproportionately vulnerable to the pandemic I know these disparities aren't new, but how are they intersecting with the disability community during this coronavirus pandemic? Yeah. Thanks for bringing up this important point. You know really what we've seen is that the pandemic has laid bare many gaps and disparities to health in access to healthcare that prominently impact the disabled community You know similar to parallels be seen as it relates to the black community and people of Color I. think some some examples of that you know for so many years our healthcare system and the way we run our services has put up barriers to people living independently in the community. You know it is easier for us in this country to institutionalize someone in a nursing home rather than to support them to live in their home even though it's actually more cost effective to keep people in their home it of course, promotes empowerment and independence. It's what people want. But because we've established newly promoted this this context of nursing home care as a primary means of care across our communities, we've now seen a really devastating impact on our nursing home communities, which of course, is primarily people with disabilities. Of course, there's also intersection here and that people with disabilities of color or people with disabilities who are poor are also more likely to live and institutionalized environments. So releasing this confluence of how we've established our infrastructure, our healthcare infrastructure over the last several decades. Unfortunately predispose people with disabilities to being at much higher risk for acquiring the Corona Virus Code Nineteen, and of course, then being at higher risk for poor outcomes related to covid nineteen, I'd say a couple of other major gaps that we've seen is that you know we have a we've not been. We've not done a good job historically in integrating data collection about disability within our broader healthcare infrastructure. there's been some recent progress around elements of race ethnicity preferred language, etc. But disability still typically is not disability data is not collected that makes it very difficult for us to know how the community is being impacted. Whether, or not there are disparities, gaps and things like testing for people with disabilities whether people with disabilities are dying at a higher rate you know I think I think the answer is fairly intuitive, but frankly, it's not data driven and that's a that's a big gap because data is what drives policy drives -Unding and that's something that we need to fix the future. mind. You're going yes. Sorry. We have a delay. Of course we're all three different places due to the virus that we're talking about right now go ahead and add your point there. Normally. As far as you want some concrete data right now Massachusetts we have over thirty two thousand people that are living in nursing homes right in his estimated that at least ten, thousand of those people could be living in their own homes with the proper supports. So the onset decision on ninety nine ruled that unjustified segregation of people with disabilities in five discriminate because it violates the ADA and we all know to stable housing is one of the key determinants of health. Right. But if you look at it in this pandemic, ask for the Kobe nineteen, the highest death tolls over forty percent are amongst people living and working in nursing homes that's over forty five thousand people that have expired. Nationwide, in over fifty three, hundred people here in Massachusetts alone and folks that disabilities are definitely represented amongst those underlying medical conditions. So you know if you want to talk about again real intraday it integration, we have to be able to move folks out of nursing homes where they're more at risk out of these institutional facilities and move into the community where they can live independently access the American dream live, it fully, you know folks need some supports personal care attendants supported living do a variety of them, but the key for our state really is a lack of affordable and accessible housing. All right. So we have about two minutes left and I want to ask you both just briefly from each of you. If there were an ad a two point. Oh, law to come forward today what would be key provisions you'd WanNa see. Good question well, I'd say I think some key points for progress into the future. You know I think that that policy change and legislation and laws can change infrastructure and we've seen some impact there but but but laws don't necessarily change culture, and so I think when we think to the future of what could have the biggest impact we still have a lot of work to do as it relates to reducing or cultural bias and stigma around disability. Disability is something that impacts frankly nearly everyone at some point in life and that when we think about inclusive services. We need to understand that it's not just for a small subset of people in our society that's actually for everyone. So I, I would probably try to tackle it from the standpoint of thinking of how how we can. We can continue to make progress as it relates to things like the built infrastructure, things like accessibility and communications, things like closed captioning and accessible websites. But how we really get at the cultural change reducing stigma around disability and understanding that it's not a lesser way of living or something that needs to be devalued but actually heart of the big life experience that we all face. You that have about a half a minute left please are good for me. I'd say education and enforcement a laws only as good as it is enforced and I think education about some of the things that we talked about. Disability Rights is human rights. Disability rights is civil rights in needs to be taught in school people need to understand how we got to where we are. Now you know it was a bipartisan move to pass the ADA, but it wasn't because there was some benevolent feeling. In fought for it. And that is Portland towns, the Third Deputy Director of the Boston Center for independent living and Dr Sherri Blau at a sports medicine specialist at Brigham and Women's Hospital. Thanks to both of you for joining us to mark the anniversary this week. John? Okay. Have you had that day or week yet this year where you are just done with twenty twenty illness and death job losses police violence protesting during a panic political strife it has been a tough year so far. So where do you turn for hope and strength when it gets tough? Well, our next two guests turned to books and draw inspiration from great stories of overcoming and that's what we're going to talk about for this next segment and we want you to tell us about your favorite books about overcoming about resilience. What are you turning to read? Maybe, there's something new. That's moved you. Maybe there's an old standby that you've turned to again who are the role models real or fictional that show you the way forward now or maybe you're finding that you just can't pick up a book and you WanNa tell us about that eight, hundred, four, two, three, eight, two, five, five, that's eight hundred four to three talk or tweet us at Radio Boston. So our fellow travelers for this conversation I we have Camille Washington she hosts the culture podcast, the unfriendly blackhawks welcome back Camille. Inks happy to. Be here. and Nick Petra lacks who was the assistant manager of Brookline. Booksmith. Welcome back to you as well nick. Thank you very much appreciate that. So, we are talking about resilience stories that show us how to overcome nick. I'm going to start with you because like many Americans you've been furloughed from your position at Brooklyn Booksmith it's gotta be an extraordinarily tough time. So with that in mind has it informed how you've thought about this concept resilience overcoming how do you define it? I would absolutely agree that it has forced me to rethink. Everything because you know I did something for you know twenty plus years and suddenly I'm not doing that So turning to books which I think is a wonderful touchstone for so many people You know it's it's they're not allowed you open them and they are activated when you read them and so I find them you know amazingly effective to remind me that people have been. You know through of course much much worse than what I'm dealing with and I. Enjoy seeing those stories. Unfold between the pages. Camille. How about you? How are you thinking about this idea of resilience this year so many people twenty twenty just been. Made me one of the most challenging in their lifetimes. Yeah I think that there are many people who would like to return the year twenty twenty to the store if they could. and. You know for me as a black woman as a queer person this summer has been especially challenging and I've had to draw. On deep deep well of resilience. That doesn't always come naturally or easily It has really been wonderful during this time to turn to some of my favorite books and draw strength from them. So I know that for both of you, the black lives matter movement the protests that are still happening across the country over police brutality and the death of George Floyd have been both on your minds. Let's start Camilo start with you. Let's actually talk about some books there and again, listeners call with your books. What what stories of resilience are inspiring you one, eight, hundred, four, two, three, eight, two, five, five. Camille. Water One or two books that you're turning to process that part of the moment in history where in. we'll the first book that comes to mind is when and where I enter the impact of black women on race and sex in America by Historian Paula Giddings the story of black women in. America. Is Fundamentally one of resilience. So it's really obvious pick for me and this book was blurb by both Tony Morrison and Maya Angelou. So that's how you know it's good It's a rich but imminently readable history of the contributions black women to public life in the United States. From around eighteen forty to nineteen, eighty it's a really rich text. So if you do pick it up I, encourage you to give yourself plenty of space to read it over time and it tells the story of well-known black women like Ida b wells and Shirley. Chisholm. But it also will inform you about you know some women that you might not have heard about like Sadie Alexander who was an accomplished scholar and lawyer who served under not one not two but three US presidents. So Nick People are picking up books in the space people will go get the book. Camille is recommending we've seen EB abram candies be an anti-racist ton of Hassi coats between the world and me on the New York Times bestseller list, you had one or two you wanted to add to people's pile as well. What are they? I did a you know the books that you just mentioned the ones that absolutely everybody wanted to get There were a couple others the first one that I thought it was when they call you a terrorist, which is black lives matter memoir on there was written by one of the women who launched their black lives matter movement after the acquittal of George Zimmerman the murderer of Trayvon Martin. So this book, of course, the black lives matter movement is a big part of the book. But the author Patrice Con Colors. Also just talks about what it like growing up poor and black in America and how she was. Forced to feel that being poor was her fault I'm if anything bad happened it was her fault because she was court in a poor neighborhood. Which of course is? Frightening on so many. Different levels. But that when they call you, a terrorist is just an amazing book really a resilient writer, the other. is they can't close all by Larry who was a terrific young journalist and this book stemmed after Michael Brown was killed. You know yet another young African American man who was murdered on this time, of course, by the police. So those are two books that are high on the list, but maybe weren't as popular as you know between the world in me or how to be an anti-racist, which also, of course, are wonderful wonderful books. I'd love to get your reaction to one that has really stayed with me books about ten years old now. But in this space, it's called the warmth of other suns by Isabel. Wilkerson and it's about the great migration. I think it was published in two thousand ten and tracks a number of families migrating from the south to the north over a forty year period and tells incredible stories of what people left, what people came to how they built their families, and for me was just a deep education in a piece of our history in America that I was just not taught in school at all. I don't I'm sorry. You're familiar with the fact that I got dead silence for both. I'm GonNa have to carry the torch on that one alone. I was having the the the microphone over but no the. Book came out. It was a huge huge seller. That's one bit. In all the bookstore associated with has continue to sell incredibly well, and like you say it was a piece of history that for me I also was unacquainted with and to see that Modern Day migration you say, going south to north and what had to be left behind and what they faced on that journey north. Yes you know just just incredible Wilkerson is just wonderful. Yeah and I would absolutely cosign I think that a lot of times what we're taught in schools about black history is really like all around the civil rights movement and it's like black people don't exist like much before or after nine hundred and sixty five. So it is nice to tell these other stories. So Camille to come back to you because I want to shift into fiction. Now, sometimes would a fiction book can do is give us a chance to escape but also either validate our reality or give us a way to make sense of it or maybe in this case with stories of resilience overcoming role modeling, what it means to truly tough it out you've been talking with us about little women in the past. I know you admired that book are there other fiction books that came to mind for you on this subject? Yeah. There are a couple. The first is an Oldie but a Goodie Jane, Eyre, by Charlotte Bronte Now, if you haven't read this book since you were forced to in high school I, we encourage you to crack it open again. I began my relationship with this book as I think an eighth grader and it has become over the years my favorite book of all time I mean Jane Eyre is kind of Proto feminist novel she describes herself as poor. Obscure. Plane and little, and she has to do with all of that in addition to being a woman in a time when women had little to no autonomy. So she has quite a lot to overcome and Jane is resilient in the face of all that adversity. I think the resilience that I'm most moved by in the book is Jane's Moral Resilience like she would quite literally rather be starving and homeless and act outside her own values or sacrificed her independence and I think it was amazing as a young person and as you know a woman in my early thirties now to be. To have this example of someone who's committed to her own spirituality and morality in a way that honors her own passions and desires without robbing her of equity. And then quickly the second down endorsed that yet. It's so so good. And there are lots of great film adaptations as well. The. Second Book I WanNa recommend is full disclosure. By Cameron. Garrett which is a young adult novel that focuses on an HIV positive teenager whose navigating high school and all the normal things that teenagers deal with like making and keeping friends falling in love and just developing as a person and the protagonist is the black adopted daughter of two gay men, both of whom are also people of Color it's primarily a story of the resilience of HIV positive people but it also touches on the resilience of Queer folks and Black and Brown people So if there is a young person in your life that you want to. Share. Some of those important stories with full disclosure is a great book for them. Those are great recommendations and Nick I know you have station eleven on your list which really struck me I loved it. I read it a few years ago in it felt more like fiction than than I think it would feel now. Is the wonderful scary thing about that book because you know in the middle of the pandemic why not go back to a book that is about a Pandemic and flu that decimates the population. What I loved about the book was that it begins with Shakespeare, which is how I want of course, all of my pandemic post apocalyptic books to begin In this case, it's King Lear and one of the stars dies onstage, and that's how the story begins and then we flash forward twenty years out to this pandemic has literally killed most of the population that we have a traveling troupe Called the traveling symphony that is itinerant and age wander around the Great Lakes region and they are artists doing the only thing that they know how to do how precent though Emily Saint John Mandell was in her book to describe some of the things that are happening today is uncanny loved about it though is that at the end, there is this moment where they realized that there's a community that has brought back you like Trinity. And just the idea that civilization is beginning to flower again. Is Amazing and when it occurs on page, it's just it's like you're you're given you're coming up from era after having been held underwater for for five minutes. So I, loved station eleven. Let's go to the phones. We've got Chris on the line from Jamaica Plain Chris what book do you WanNa Talk About Oh. There's so many books I'm a social studies history teacher and I would say Tonto coat eight years we were in power really captures on eight years during the Obama Administration but connects back. Directly to the history, even slaven and resistance Also, we're in Boston and Kerri Green it's a small short small book about Boston's Black. ABOLITIONIST, can we are here in the center of of Black Resistance? I might address mercy to that list and I have to say as a person with a disability to humans book being human is helping me right now in this moment because. our state legislature just. Did declined to update our state legislature regulations to be in keeping with the ADA to make to add more accessible housing and accessible workplaces on a face. I mistaken the for that list. Yeah we've had we've had both of those authors, those last two authors Judy, and cure greenidge both on our air in the last year or two. Let me turn back to our panelists and ask you for reactions to those recommendations. Tallahassee coats is. One of the great great writers of our time. So I'm really glad to hear one of perhaps his lesser-known books get an get a recommendation. And I would absolutely second got. Between the world in me as such powerful book being a letter to. That earlier book yes also is just amazing. So cosign like you said. So, Camille. One of the books that you talked about in the fiction space was a why book and as I was getting ready for this segment in thinking about great stories of resilience I just kept turning back to stories about young people and often stories from. Children's stories in Waie stories. It is there something about that, Jon? Rao? For lack of a better word that that's really relevant right now. Yeah I mean I think that as we're seeing in all of the various protest movements today that there's a certain hope that is particular to young people I mean youth is itself really hopeful concept right? Like all the future lays before you how can we shape it into what we want it to be, and so I think in that way stories about young people just kind of tap into that happened to that hope. And Nick. I was thinking and listening to the two of you is feels like some people are kind of diving into the darkness with their reading with these challenging subjects and challenging texts. Whereas, others might WANNA escape but but I'm hearing more and more people are diving in why do you think that is? For me when it first happened and craziness was for overtaking and we didn't know there at the beginning in March how bad it was going to be when we were talking about, I remember our events coordinator on March I was saying are going to cancel all of our events and that was inconceivable. But when I went to books books that I used to go to that were you know, let's say funny books lighter books they just weren't resonating with me whereas you know talking about why if I picked up the hate you give By Thomas Dot somehow since it speaks. So directly to where we are right now it just resonated more and you know we're lucky that that we have so many brilliant why authors and that that you know genre I'm is so rich but the I don't know I guess it's just the you know what my ear was looking for and and at this moment I I'm not looking for you know Good Day Sunshine I'm looking for revolution and so that I think is why some people are gravitating one way rather than the other. I am on a hard clock here. I've got less than a minute. So lightning round your next book Camille. Big, friendship how we keep each other close by. So and and Friedman it's a memoir of friendship as well as a research guide to sustaining deep friendships over years and through change. And the Petra lackey's. Sorry for me. It would be how much of these hills is gold by seep Pam Sang, which is just a wonderful retaliate of the western and takes that trump and it just turns it on its head and said obscene it through the eyes of your typical white. Calloway. It's told through the eyes of two young Chinese sisters who have recently been orphaned and are in a quest to bury their father during the. You there. So we've got nick mitnick Petra and Camille Washington, this was a blast. Sorry to be abrupt. Thank you so much for joining us. Thank you thanks. What does a young opera singer do during the coronavirus pandemic Oh arc degrees or sort of obsolete now and like all our classes or like what is even happening but let's all play animal crossing like you know. They little towns like here's some normalcy like many millennials they play video games. So maybe we should've asked what happens when opera singers play video games. All. This Radio Boston Producers Owing Mitchell went to find out. Sopranos Larussa Baynton and Celeste Pellegrino are playing the roles of Hansel and gretel on a performance staged entirely within ten does animal crossing. The stars are two video game characters with comically oversized heads. Wide Colorful is adorable. Smiles plastered on their faces. I think it's just goofy and charming and silly and I. Think it's funny to just like these little like baby looking characters singing full opera. That's Pellegrino she and Baynton created the offer company do a Donna productions while they were completing their master's degrees at New England conservatory. The music is from German composer Ingle Bert Humperdinck. In case you've forgotten the fairytale, it's about two young children lost in a forest who encounter a witch and a gingerbread house. Just wait till you see the witches house. The candy. House. Nineteenth. Century Fairytale Operas. An modern video game may sound like opposites but Pellegrino says combining the two felt natural animal crossing is where you get to design your own island world with fun cute animated characters. It's kind of like the Sims if you've ever played the sims where you're kind of in a other reality, but the characters are much more cute I would say. Animal crossing has been around for about twenty years, but it's in the midst of a massive resurgence. The newest version which came out in March sold thirteen million copies in the first six weeks of its release. It's part of why it can be difficult even now to get your hands on the Nintendo switch console. A core part of the appeal is that the game allows players to be together virtually in real time. That's what made the production possible. While they recorded the music separately. All of the performers were able to act out their roles through the game as their own animal crossing avatars. Watched the opera and you hear it it sounds like these people are in the same room and there's no visual reminder telling you that they're not. So it feels like this is performance that happened together when you see the squares on Zoom, you know that they're not together. And the best part of life theater is experiencing something. I think together that's Pellegrino again before the pandemic do a Donnie productions was planning three in person operas in received grants to help them employ about forty singers. Now, the future for any in person productions is uncertain says being ten. It's been like a uniquely devastating experience and that singing is like one of the most dangerous like things you can do and it's kind of like put the whole industry in chaos. Baynton, is among many in the industry experimenting with how to perform and connect with audiences remotely the traditional way to do it is great but like these other kind of new, maybe weird ways of doing it are also exciting I. Think it doesn't. It's nice to be able to look. It doesn't have to be this like one way that everyone kind of thinks of it. And as pelegrina points. Cartoons and opera have been intertwined for decades. It pops up episodes of the ninety show. Hey, Arnold in spongebob squarepants and of course, looney tunes and Bugs Bunny. I feel like if you ask anyone, they're going to know the right of the Valkyrie theme. They might not know the name, but they'll know what it is in their head. So I don't think this is totally out of left field. That being said I think the video game is just like the next generation of that kind of cartoon. They hope that this approach to opera, we'll draw nontraditional audiences. Pelegrina says they have also received positive responses from opera, lovers. Benton said the most powerful thing about the project was performing again with other people, I. Think we all felt kind of emotional like watching it for the first time and hearing all of our voices together and we were like, oh my gosh, like it sounds like we're together even though we were apart. That's Radio Boston. So we Mitchell speaking with Lisa Baynton and Celeste Pellegrino of do eh donate productions, Hansel and gretel premiered on Saturday and it can be viewed anytime online. We'll have more information at Radio Boston Dot Org. That's our show for today. Radio Boston is a production of ninety point nine W.. B. U.. R. Boston's NPR news station. I'm TCI during thanks for listening today and join us again tomorrow for more Radio Boston.

Boston Ada Pandemic Camille Washington Patriots Chris baseball nick Dr Sherri Blau football Portland John Deering Massachusetts marcus cannon Celeste Pellegrino Larussa Baynton