A disability rights advocacy podcast that brings together advocates, policy makers, and people with disabilities to talk about the issues facing the disability community.
Episodes
Monday May 11, 2020
Monday May 11, 2020
In this episode of the Access Aisle, Able SC’s Director of Advocacy and Community Engagement, Robbie Kopp, and Advocacy Coordinator Tiffany Namey team up with Assistant Regional Census Manager Marilyn Stephens to bust some myths and share some facts about the U.S. Census. In this episode, the hosts discuss why it is important for people with disabilities to be counted, how the 2020 Census is the most accessible census in history, how the current pandemic has impacted the census, and much more.
Episode Guest: Marilyn Stephens: Assistant Regional Census Manager for the Atlanta Region
Marilyn Stephens is one of the most requested Census Bureau speakers. The Miami, Florida native earned a Bachelor of Arts degree in Marketing. Marilyn currently serves the Census Bureau as the Assistant Regional Census Manager for the Atlanta Region which is responsible for census operations in Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina and South Carolina. In this capacity, she manages the community engagement and partnership program throughout the region. Moreover, she meets with and serves as the agency’s liaison to the region’s seven governors.
In November 2003, she received the Bronze Medal Award, the highest meritorious honor given by the U.S. Census Bureau. Also, she is the chairperson of the South Florida Federal Executive Board. The Federal Executive Board system was the creation of President John F. Kennedy (reauthorization is granted by each subsequent President).
Credits:
'Access Aisle' is produced by Robbie Kopp, Tiffany Namey, and Sarah Nichols. Our editor is Robbie Kopp. Able South Carolina.
Disclaimer:
Able South Carolina is providing this podcast as a public service, but it is neither a legal interpretation nor a statement of local, state, or federal legislation or policy. Reference to any specific product or entity does not constitute an endorsement or recommendation by Able South Carolina. The views expressed by guests are their own and their appearance on the program does not imply an endorsement of them or any entity they represent. Views and opinions expressed by Able South Carolina interns, board members, and staff are those of the individual and do not necessarily reflect the view of the Able South Carolina or any of its funders. If you have any questions about this disclaimer, please contact our Director of Advocacy and Community Access.
Transcript:
[music]
00:14 Tiffany Namey: It has been 10,875 days since the Americans with Disabilities Act was passed.
00:22 Robbie Kopp: And you are parked in the Access Aisle.
[music]
00:32 RK: My name is Robbie Kopp, the Director of Advocacy and Community Access at Able South Carolina.
00:37 TN: And I am Tiffany Namey, the Advocacy Coordinator for Able South Carolina.
00:41 RK: Today, we are gonna take on your questions about the census and make sure you are comfortable, confident and ready to get your census questionnaire in and done. Joining us today is Marilyn Stephens, Assistant Regional Census Manager for the Atlanta Region of the United States Census Bureau. We're gonna be asking Marilyn your questions that you share here with us and make sure that you have everything you need in order to stand up and be counted for the 2020 US Census. So Marilyn, welcome, so glad to have you with us.
01:10 Marilyn Stephens: It's my absolute pleasure. Thank you for inviting me.
01:13 RK: Yeah, absolutely. So we're gonna start with a really easy question, hopefully, but Marilyn, tell us what is the census and why does it matter?
01:21 MS: Based on Article One, Section Two of the United States Constitution, every 10 years, and really, we are sitting in zero, the Census Bureau is tasked with counting the entire population of the United States. The purpose of the census is for apportionment to determine how many seats each state gets in Congress, and that really determines that state's voice. So the more seats you have, the bigger your voice. Well, Congress has changed over time since the first census was taken in 1790, it went from 65 to 103, now to 435, where it stands. So the census is about political power, and it's about money. States depend on the $675 billion in resources that are allocated from the federal government down to the states every year. And in those funding formulas, the basis is census data.
02:29 RK: So that's really incredible. So folks that are really interested in the political voice of South Carolina, making sure that we have a fair and accurate count in a state where we expect that there's been a population increase can change into more congressional seats and greater representation in the United States House, and that's really helpful to know. And tell me that number again, Marilyn. Let's drive home that point of how much money is really at stake when it comes to the formula for apportionment.
03:00 MS: It's $675 billion. That's $7 trillion over a decade. So it gets to be real money.
[laughter]
03:08 TN: That is a lot of money.
03:11 RK: Real money is such a huge understatement. Yeah, that's a $7 trillion impact over the next 10 years and making sure that South Carolina gets its piece of the pie.
03:21 TN: For people with disabilities, Robbie, that money goes to programs like SNAP, and what other kinds of programs might that go to, do you think, that would impact the lives of people with disabilities?
03:34 RK: The transportation dollar is a really big piece of that too, that we can't overlook. Marilyn, tell us some of the other ways that that $7 trillion kinda breaks down into programs for real people on the ground.
03:46 MS: Medicaid, Medicare, TANF, Temporary Assistance for Needy Families, education programs, libraries, veterans, senior services, so the entire plethora of federal programs, all of them impact people with disabilities.
04:10 RK: For sure.
04:10 MS: Because of their families, because of their children, because of their communities. Highway construction and planning, emergency preparedness, community health clinics, all of these things are heavily impacted because of census numbers.
04:27 RK: Absolutely. So it's really clear and really hearing all of the programs that are impacted by the census numbers, I mean it's clear that the disability community is impacted and what services are available and provided. So let's talk just a little bit about how to get the census done. What are some of the questions that folks can expect as they complete the census?
04:48 MS: Well, the good thing is the census is simple. We don't deal with a lot of questions, and people really like that about the census. We ask for your name, we ask for your sex, we ask for your birthdate, and we ask if you are of Hispanic origin, we ask your race. Now, if there are others in the household, we ask what is their relationship to you. And household relationship has been on the census questionnaire since 1880. So it's not really a new question. It's about 10 questions, a little less than that, and it takes about 10 minutes.
05:29 RK: Yeah, and I think that's the thing that folks sometimes miss is that we hear a lot of information about the census, I think there are a lot of community reminders, and it also seems like never quite enough of those community reminders, but the time that it takes to really complete the census is next to nothing. Our household, we did the census the first week that it was available online, and it took... I think we did it in like seven minutes for the three of us and it was really, really simple.
06:00 MS: Yes. And I think that this census cycle is the first time that we had so many options to participate. In the previous cycles, we'll email the questionnaire out and you send the questionnaire back to us. And this time, with all the options of online, telephone and by mail, I think that people with disabilities have been giving us really positive feedback about this was just ideal.
06:27 RK: Yeah, and that's really great to hear. I think in 2020, it makes sense for us to do things online and make sure that that online information is accessible because technology is making... It's leveling the playing field for folks with and without disabilities and making sure that there's access to participation and information. It was so glad to hear that the Census Bureau has been making that leap along with the times. We wanna talk more about those formats. Before we do that, I wanna ask just a couple of other questions that I know that folks may have been a little nervous about and just wanna make sure that we have a clear answer on whether that's asked. So first, we had a question that says, will I be asked for my social security number in the census?
07:07 MS: No. And we've had people that see the boxes on the bottom of that first question, and they think it's for social security number. It's for your telephone number. So if in fact, we need to contact you, for any reason, we will do that. And it's not for telemarketing. We're not gonna use information any other way. But if we have to contact you for whatever reason, we will. Other than that, no, we do not ask for your social security number, or your bank number.
07:34 RK: That was gonna be my next question. You took the words right out of my mouth. So there... The banking question, none of that is necessary, none of that is part of the census and neither is the social security number.
07:45 MS: It is not. This is a surveys that your listeners may be a part of. We don't ask for social security numbers on the other sets of surveys because they may be in sample for another census survey.
08:00 RK: Okay, well that's really helpful to know too. Yeah, great. I think that the social security number question and the question about financial information or banking information, we all and rightfully so, really wanna protect that and make sure that it's not shared. So listeners hear us, it's not part of the census. Don't delay in completing the census for fear of having to share a social security number or any banking information. It's not part of it.
08:25 MS: Right. If you're part of the American Community Survey, we do ask some income questions on the American Community Survey. But it's not about asking what your bank account is or your routing numbers. It's about asking a range of your income, the types of investments. And this is part of going to the economic indicators on the American Community Survey. But no, we're not asking for bank numbers and social security numbers or anything.
08:51 RK: Good. We've talked about just the short number of questions that there actually are and how we would say they're non-invasive. They're not prying questions, they're not sensitive questions, but the census is brief and easy. Tell me about the security of the data that is collected from the census. How can people know that their information is kept safe?
09:14 MS: Absolutely. This the number one question that we get, what about my privacy and my confidentiality? Census data is protected by two laws, Title 13, of the United States Code and Title 44. Under Title 13, the Census Bureau cannot publish anything that will identify an individual or household or even an establishment on our economic surveys that will show where you live, that you gave us this answer. In other words, it won't say, "Marilyn Stephens says that she is 21." Again. And it won't say that Marilyn Stephens lives here in Nevada, it won't say any of that, or North Carolina, it's just an aggregate of data. The number... Just age ranges, how many people are male, how many people are female, how many people own a home with a mortgage, how many people own a home without a mortgage. What types of relationships, How many have spouses, how many are children, how many are in-laws, how many are parents. So we don't publish anything that will identify you or your household with any response you've given to me.
10:31 MS: Then title 13 goes a step further. Census data cannot be gathered by anybody. Nobody from law enforcement, no CIA, no FBI, not even the IRS on that even ICE not even immigration cannot be subpoenaed by the courts, cannot be gathered by the President. No one can get census data. Census data is floating out here on this island, that's highly protected. Under Title 44, the other law that protects census data, census data is sealed for 72 years. Therefore, those genealogists that are your listeners are wondering when is the next release of census data, the last release was in 2012 for the 1940 census, because the 72-year threshold of the title 44 had been met. The 1950 census will be released in 2022. And that would be the latest census to be in the public domain.
11:31 MS: So census data is protected. However, if for any reason similar to what happened during the Katrina catastrophe in the Gulf Coast, and you have to be relocated and you don't have any identification, through the Census Bureau's age search program there's a BC, Bravo Charlie, 600 form where you can request... I can't request your information, only you can. And we will send you a document that says you are Marilyn Stephens, you were this age during a decennial census, and you can use that to get entitlements, to get a passport. And literally to put your life back together.
12:13 RK: That's really amazing. So the data is, I mean, it sounds like it is incredibly well protected from even federal agencies, but when you need it as an individual, if something unbelievable happened, something terrible or a disaster, you can get access back to your own information to confirm your own identity?
12:34 MS: Absolutely.
12:35 RK: That's amazing. It sounds like it's set up to really serve the public benefit in the least of risk way possible.
12:44 MS: Absolutely. I'm telling you, when people say, "Well, this is private or confidential." You get something in the mail that privacy policy has changed, the first thing I look for is it under Title 13? [chuckle] Because I know that it's protected by law and all census employees are covered under the law on a lifetime sworn status, lifetime sworn status. In the old days, our grandparents talked about taking things to your grave. Well, I think the lawmakers heard that and made that Title 13. Because we have lifetime sworn status, we cannot release... We cannot reveal anything that we know will identify you or your household. That can lead to a prison term and/or a quarter of a million dollar fine.
13:31 TN: It sounds like that census information really can save your life though, it's just a really good backup. It takes 10 minutes and you've given yourself an insurance policy to have your information protected.
13:45 MS: Yes, and just think, for any reason, if your children need information about themselves. Because often, parents are leaving their children off of the census questionnaire. And we don't know why. So we have made an all-out effort this census to have parents to understand the importance of counting all their children in the census.
14:09 TN: Well, Marilyn that brings up my question. I've heard of specific populations being referred to as "hard-to-count". What is a hard-to-count population?
14:21 MS: Hard-to-count populations are those populations that are traditionally... That have been disenfranchised over the history of the nation, therefore, they have been... People... It's been handed down through the years about different reasons that you don't wanna participate in the census. So minority groups, people with disabilities, they have been traditionally hard-to-count. Mistrust of government, afraid that what they provide to the government will be used against them in an adverse manner. High poverty areas, low educational attainment, immigrant populations, those are traditional populations that shy away from being involved in anything that pertains to the government, and particularly, the census.
15:07 TN: And you said that the disability community is traditionally a hard-to-count community.
15:12 RK: Absolutely. One of the things is the fact that we have to do special outreach because people are saying, "Because of my disability, how is this gonna help me? How is participating in this census really going to help me?" That's what everybody wants to know. "What's in it for me? How is this going to help me, this civic ceremony?" So, we have in the last three census I've been involved in, there has been a concerted effort in outreach to the disability community to raise awareness on the importance of the census. To securing resources over a decade. People with disabilities have children that are in school. People with disabilities of course, need healthcare services. People with disabilities need Medicare. People with disabilities are very concerned about how a construction and planning and having good roads in their places. Very concerned about transportation... Their transportation needs. So our ability to connect with the community to explain the importance of the census, and call it once a decade reset. That all of us get this once a decade reset to chart the course and solidify the direction of that pipeline of resources that we're going to get annually.
16:35 TN: So, does the census actually ask any questions about disability?
16:40 MS: Not on the... Not on the 2020 census questionnaire. We do ask questions about disability on the American Community Survey questionnaire. So, many of your listeners will... I've gotten calls already. There's people who say, "I've got this in the mail. It says, "The American Community Survey", what is that? Should I do that and the census?" And the answer is yes. And there are questions on the American Community Survey about disabilities.
17:06 TN: If there are no questions about disability, then why is it important to make sure the disability community is counted correctly? We talked about "What's in it for us?", but what's in it for you? What happens if we're undercounted?
17:23 MS: One of the things is that... That came out in our summit for people with disabilities that we had earlier last year, representation. And that's one of the things that we wanna press upon people. Congressional representation is the key, is the primary reason we take a census, that's the key. So when people with disabilities go to their congress person, they want to make sure that they are included in that number so that they're getting to represent... The people that represent them. So when they go to their congressmen and say "And we know that our populations are substantial, we live in this area, we've got another congressional seat, and we need some services." But because the numbers are the things that count, because all of us are the same in a census. And all of us are looking to be able to get certain kinds of representation. One of the things that I say, there would not be any minority-congressional caucuses without the census. And most people don't know that.
18:31 TN: So the one concern and you just touched on this a little bit before, but the one concern that we've heard a lot is is that people with disabilities are afraid to fill out the census or may just be a little hesitant about the census because they think that their information may be used against them or that they could lose their benefits.
18:53 MS: No. One of the things is that in some communities, there is a restriction on who can be in that household. Some of them have a person restriction where it pertains to... If you have non-relatives there are gonna be so many, the census doesn't deal with any of that. Because no one sees your information. Therefore, you can be 100% accurate on the count because it's for apportionment. No one, not the city officials, not the code enforcement people. No one. But when you are not counted in a census and your city, or town, or county, or village, is short on emergency management resources or they have to scale back on transportation services, it's because the census numbers do not support the need, which is the basis for the funding formula.
19:51 RK: It's so important as we look at the programs and services that are provided and what's available in the community, knowing that being under-counted or not participating in the census makes it so that we may end up finding reductions to what South Carolina is allocated to use for the public benefit. And I don't think that's anything that the South Carolinian wants. We wanna make sure that South Carolina gets its fair share.
[music]
20:33 RK: We've talked so far about what the census is and why it's important. We've talked about some of the fears that folks may have with participating and I think we put all of those to rest, which is really amazing. So let me... I wanna return to a point that you had made earlier and maybe dive down a little bit deeper. You mentioned that there are more ways than ever in the 2020 census, to complete the questionnaire.
20:57 MS: Yes.
20:57 RK: So tell me... Give us a reminder of how folks can complete the census.
21:02 MS: First, people can complete the census online at my2020census.gov. And you can complete it online in language because this census, we are supporting 11 non-English languages. Or call a toll-free number at 1-844-330-2020. And we'll provide to you, Robbie and Tiffany, a fact sheet that you can make available to your podcast listeners, that will provide them with other information about the census and how to respond, and to ensure that it is accessible for them with the TDD number as well.
21:49 RK: That's great. I think you're really prying for where I wanted to go next with some of the questions that we've gotten, and that is the accessibility of the different formats of the questionnaire and how it's available. So can you comment on how accessible the online version of the census is, for folks who may have a visual disability, and use a screen reader?
22:10 MS: Yes. The Census Bureau's website has to be in compliant with the law, that's number one. Because I'm asked that all the time, "Is the Census Bureau's site in compliant with the law as it pertains to people with disabilities?" And the answer to that is yes, it is. Every other precaution has been taken as well. There's even a Braille of questionnaire assistance guide that we've had in previous census cycles and we will get some in-house that we'll be able to distribute to persons that request them, also for those that have the special printer. They will be able to print that particular Braille guide out and have that guide. There are also some large print questionnaire assistance guides for those persons that may want to complete their paper questionnaire. So we have taken every... We've looked at every conceivable way to ensure that everybody is included in this census.
23:09 RK: Yeah, and that's really evident. I get to ask folks about accessibility pretty often in the work that I do. And if I can ask someone one accessibility question and they tell me about all of the alternative formats for a particular population and they're able to work ahead of me in that way, that's always a really encouraging sign. I did ask that question, knowing the answer. We've had a friend who is a South Carolina constituent, she uses a screen reader, and she kind of tore through her census, got it done really quickly, and then shared one of these questions with us afterwards that has already been answered. But her comment was that it was so easy to use and incredibly accessible, that it was quick and easy for her to do for her family, which is great.
23:55 MS: Yeah. What we really want your listeners to do, is to... We want to become a circle of 10. Once you complete yours, call 10 of your friends, neighbors, and associates and say, "Have you completed the 2020 census? It's important and it's really easy and it's safe." And let's expand our circle of 10, and see how far your circle of 10 extends.
24:19 TN: We're encouraging everyone when they fill out their census to use #morethananumber and #disabilitycounts2020 and share with us on social media that you have been counted, because we want to know that you're filling out the census. But we also want you to tell everyone else that you're filling out the census too, 'cause you are an example to people in your life, and they go, "Hey, you know? I should probably be doing that too. That's a good reminder. Thanks."
24:54 MS: And also, use #2020census so the Census Bureau will be able to pick up on it.
25:00 RK: Yeah, that's awesome. I think as folks complete the census, it's important to tell that story and to have that story spread. So we even talked a little bit about completing the census for someone who may be deaf you mentioned TTY and TDD to make sure that folks can access information over the phone or over the phone lines, if they have a hearing disability. So I think that that's all really, really helpful information. So any listener who has not yet completed your census questionnaire, we're kind of taking away your excuse. It's time to hop to it and get it done. With that in mind, I do wanna ask another question. If someone is going to complete it and they just need a little extra help or a little support as they go through, how can they ask for help?
25:48 MS: Yes, they could call our toll-free number at 1-844-330-2020, and we have representatives that will take the information by phone. You could actually complete your questionnaire by telephone.
26:03 RK: That's great. So don't forget that toll-free number, it's important to ask for help when you need it, and don't use that as an excuse to not get the census done. I do wanna ask, there's just a couple of questions. We're living in really interesting times right now with a lot of risk in the community and practicing social distancing, can you comment have there been impacts to the 2020 census from COVID-19?
26:30 MS: Yes, we paused all of our public contact operations a few weeks ago. And so we are using contacting our partners through social media, the various platforms. We took our staff out the field, so that's been a little different. Also, the online... The self-response rather, the self-response period was from March 12th through July 31st and it's now March 12th through August 14th. That has been extended. But we want people to complete today. We want you to, 'cause every day, every day the response rates are published every day. So the national response rate now is at 48.1%. So you definitely want to... Some of your listeners may have challenges with their friends like I do with my friends. So every day we decide who wins the day, who has the highest response rate for the day. And anybody whose state is like an outlier, we take them out the group. [chuckle] We wanna make it easy for the remainder of us. So they may want to do that. So the national response rate now is at 48.1% as of today.
27:49 RK: Yeah, that's really good to know. And as of today, our record date is April 13th. So as of right now, that's the daily response rate. And it will be different the time that this podcast is released and different a week after that and a week after that.
28:04 MS: Absolutely.
28:05 RK: But it's good to know where we stand. With the traditional idea of census, there's always that image of a census worker going door-to-door and checking in with families on households, is that process going to be different? I know we'd prefer to not need folks going door-to-door and knocking because the census can be completed online and by phone. But is that process gonna be adjusted at all given the coronavirus?
28:33 RK: Well, we have moved that process back, it's been... Normally it would start mid-May. So that operation has been moved back. We don't know when we will start it and the new procedures we have yet to see those.
28:46 RK: Okay. So those are in consideration and I'm glad that the Census Bureau is really thinking through that and watching out for your people and then making sure that your workers are gonna be safe.
28:57 RK: Social distancing is heavily practiced as well as no public contact operations.
29:04 MS: Great. I think it's so important for us to think about what this might look like a few, a couple of months from now or a month from now when we start seeing those fieldworkers out going door-to-door because we can prevent them from needing to come to our door by completing our census today and making sure that our household is counted.
29:24 TN: Correct.
29:26 RK: Absolutely fantastic.
29:27 TN: That is for sure.
29:28 MS: That's what we want everybody to do. And now it's because it's so easy with the options. Last week the households that had not responded received a paper questionnaire. Therefore they have all three options in their heads, online, telephone and paper.
29:44 RK: That's great and that's more than enough for you listeners as you listen at home or as you listen in the backyard or the balcony of your apartment as you social distance. No matter where you are, you can do it right now. You can do it over the internet, you can do it on your smartphone, you can dial the old fashioned way from your phone and make sure that you get the census completed or you can send that questionnaire in in the mail and get it done and help keep a field worker from knocking on your door. I think with all of that in mind, we've really driven home how important the census is and how it directs federal dollars that we really rely on for really important programs and services from transportation to Medicaid and Medicare and snap and tennis and the list goes on and on.
30:33 RK: Making sure that South Carolina is allocated our fair share. We've also talked about some of the fears that folks might have about the census and really laid those aside knowing that the census is simple and it's safe and it isn't intrusive, it's not collecting information that'll make us uncomfortable and a little bit that is collected is also protected. And we've also talked about how accessible it is and how easy it is to get it done and to get it done now. I wanna say thanks to all the listeners that have sent in questions and participated in this process with us. I wanna thank you Marilyn so much for spending this time with us.
31:11 TN: Thank you Marilyn.
31:11 RK: And answering our questions and helping us feel comfortable and confident.
31:14 MS: Thank you for inviting me.
31:16 TN: Yay, Marilyn.
31:20 RK: So glad to have you. So one last note, completing the 2020 census is quick and easy. Do it now. Once you do it, share it on social media. Use hashtags, #morethananumber #disabilitycounts2020 and tell us your hashtag again Marilyn?
31:37 MS: #2020census.
31:39 RK: And share it loud and proud and be counted.
31:44 TN: Able South Carolina is here for you and we want you to be here with us. So subscribe to our email, like us on Facebook. Follow us on Twitter or contact us by phone. You have been parked in the Access Aisle, a production of Able South Carolina.
Monday Apr 27, 2020
Monday Apr 27, 2020
In this Disability Service Announcement episode of the Access Aisle, our hosts, Megan Wagner and Robbie Kopp, share information about social distancing and how to protect yourself, your family, and the community from COVID-19. The CDC, SC DHEC, State and Local Governments are the best sources for new information.
Able South Carolina has a great listing of COVID-19 resources available here: https://www.able-sc.org/covid-19/
Disclaimer
Able South Carolina is providing this podcast as a public service, but it is neither a legal interpretation nor a statement of local, state, or federal legislation or policy. Reference to any specific product or entity does not constitute an endorsement or recommendation by Able South Carolina. The views expressed by guests are their own and their appearance on the program does not imply an Able South Carolina endorsement of them or any entity they represent. If you have any questions about this disclaimer, please contact our Director of Advocacy and Community Access at advocacy@able-sc.org
Episode Transcript
[music]
00:15 Megan: It has been 10,865 days since the Americans with Disabilities Act has been passed.
00:20 RK: And you are parked in the Access Aisle.
[music]
00:32 Megan: Welcome. My name is Megan and I am a current social work intern at Able South Carolina, studying to get my master's degree at the University of South Carolina. With me today is my amazing supervisor and mentor in disability advocacy, Robbie Kopp.
00:46 RK: Thanks, Megan. Like she said, I'm Robbie Kopp, and I am the Director of Advocacy and Community Access here at Able South Carolina. We are here today to talk with you about COVID-19 and how to better prepare yourself as we see this thing roll out over the next few months.
01:02 Megan: Well, I wish I could say we're in the homestretch of this Robbie, but it seems like everything is just getting started. So, to help all of our listeners sort of navigate this unprecedented pandemic, we have compiled a list of advice that is sent down from the CDC. Before we get into all that, though, I just wanted to take a second and say thank you to all the people out there working on the front lines to keep us safe: Healthcare workers, grocery store employees, garbage collectors, public service agents, and all of you hard working people giving their all so the rest of us can stay safe inside our homes. We cannot thank you enough.
01:36 RK: And it's so important that all of us do our part to help relieve some of the workload for these dedicated workers and make sure that we are staying at home the way that we are ordered to and that we're limiting the spread. The fewer folks that this ends up touching, the less risk there's gonna be in the community.
01:54 Megan: Right, and because there is no current vaccine or medical way to prevent someone from getting COVID-19, the CDC recommends that we all stay inside our house and away from other people until this is kind of all over. There still seems to be some confusion on what exactly social distancing is and is not. Robbie, could you tell us a little bit more about what social distancing is, what it means to do it, and who should be doing it?
02:17 RK: For sure. And first, I really wanna start out by saying who social distancing is for. If you are not sick and you don't have any reason to believe that you've been exposed, you haven't been around someone who has symptoms, of COVID-19, then social distancing is for you. If you think there's any realistic chance that you may have gotten it, then this next part where we talk about social distancing doesn't really pertain to you because you should be completely quarantining or self-isolated. We will talk about what that means.
02:50 Megan: So Robbie, what if I have to leave my house? How should I protect myself from the people around me?
02:54 RK: First, we should not be leaving the house at all unless we need to get supplies that that'll help us stay alive, not just, "I need a new pillow because this one is just not as comfortable as it was last week." But, "I need groceries, or I'm gonna go hungry." And there's a difference between those two. Some other things that have also been allowed so far is some limited outdoor travel on foot. If you're exercising or you're trying to get your cardio in, that has not been on its face banned yet, but we wanna make sure that we're always watching for the newest updates. Like I've said once in this podcast, so far, I'll probably say again, if you feel like you might be sick or you've been exposed to COVID, these steps aren't for you. Please stay inside and limit the spread.
03:51 RK: The biggest feature of social distancing is keeping that six-foot distance between you and the next person near by. If you can keep more space between you and other grocery store shoppers or service workers, even better, but six feet is expected to be the distance that the virus can travel when someone sneezes, or coughs.
04:09 RK: The current guidance from the CDC is recommending that people should wear a cloth mask at all times when they go out in public, like if they go to the grocery store. We should not be going out in public very much at all. This should just be very necessary trips, trips that we can't avoid. And when we take those trips we should make sure that we're doing everything we can to not need to repeat the trip the next day. With these cloth mask, they can be homemade, they can be made with things that you have around your house right now. The CDC's website has some really cool ways to put a mask together and please do not go out and buy the surgical masks or the medical grade masks because we wanna make sure that our health care workers have access to those. Fun fact, my aunt made a few masks for my wife and I, they're really cute and I hope to not need them because my wife and I will be staying in the house as much as possible. But when we do, we have something that is pretty simply stitched together with some cloth and some hair ties and that's all it really takes.
05:14 Megan: I also want to add on to that, Robbie. It's really important that you, when you're using the mask that you wash your hands before and after you take the mask off and this just goes in general to outside of touching your mask, if you go out in public, you should be washing your hands frequently and not touching your eyes, nose, mouth, ears, that kind of stuff with unwashed hands.
05:38 RK: Yeah, for sure and I think one of the things that's really interesting about what the CDC said most recently about masks, is that if, if you don't have any symptoms, you may still be carrying the virus and you may be able to transmit it. So, the mask helps you keep the virus contained to your face instead of spreading it to other people in the community. Other really important things to consider for people with disabilities is how your PCA is gonna provide services. Make sure that you work with your PCA provider, your personal care attendant provider and make sure that they have good COVID practices in place and that you're protecting yourself from individuals who are there to help you but may inadvertently be carrying the COVID virus.
06:00 Megan: We're now gonna talk a little bit about if you are sick and what you should do, if you're experiencing symptoms of COVID-19, which tend to be fever, cough, or shortness of breath, do not go physically into your doctor's office. You should start by giving them a call and describing your symptoms to them and then going from there, we don't want to flood all the doctor's offices with people who think that they might have COVID, especially since we all know here in the South, it is allergy season and pollen is everywhere. So, we wanna make sure that the doctors can do that initial meeting with you over the phone before you go in.
07:04 RK: Yeah, and then an important thing is really following the instructions of your doctor. It's always good to start with a phone call and to touch base and share what your symptoms are and go from there. Many people have been able to recover at home and don't need to go to the hospital at all and your doctor is really gonna be the best judge of that or you need to head to the hospital. If you have a hard time breathing, you feel pain in your chest or you're unable to think clearly or wake up or if you have blueish lips or face, the CDC recommends emergency medical health, making sure that you get dialed in to what you need.
07:40 Megan: But, if you are in any of those situations, you can like Robbie said, recover from home. The CDC has some tips on what you can do to help prevent family members and other people in your house from getting sick too. You wanna tell us a little bit about those? Sorry.
07:55 RK: Yeah, I'm just so excited to do it.
07:57 Megan: I know. [chuckle]
08:00 RK: If you find that someone in your household is sick, whether that's you or a family member or a roommate, you wanna designate a sick room that only the sick person stay in while the rest of the family and pets stay away. If you have a service animal, things don't really change a whole lot for you. You wanna keep that service animal with you at all times and make sure that you're the one who's making sure that service animal is let out when that's needed and being the main contact because there is some question about if someone is sick is touching an animal and then someone who is well touches that animal, can COVID pass. So, we wanna make sure that we're being really intentional with that, whether it's a service animal, whether it's other animals in the house or whether it's family members, we wanna make sure that there's a sick space and a well space and that we're not crossing over as much as can be helped.
08:54 Megan: But if you're for whatever reason not able to create a sick space and a well space, then the CDC asks that you stay away from the other members in your family as much as possible, doing this... In your house, wearing a cloth mask. So, we talked earlier about if you're social distancing and you're not sick, wear a cloth masks only when you're outside. If you are sick and have to be around other people in your house, then wear a cloth mask inside as well, following all the stuff we talked about earlier with cloth mask usage. Try as much as possible and hopefully none at all to make physical contact with anyone and staying at least six feet away from the people in your house at all times.
09:37 RK: Yeah, for sure. So there's kind of that direct exposure from the droplets of sneezes and coughs and how COVID can pass that way but it also can live for a short time on surfaces. So, we wanna make sure that any surfaces that are touched pretty often, like countertops, toilets, sinks, light switches, door handles, all of those things and more, we want to disinfect those regularly according to the best practice for that. There's a lot of different types of cleaners out there. You wanna follow the instructions on that cleaners' bottle. Some sprays may say spray it, let it sit for awhile. Some wipes may say, wipe it down and make sure that it's good and wet and covered and let it dry. Whatever you do, just follow the advice of that cleaner because it's tested to make sure that it does what we expect it to do.
10:30 Megan: Also, if you're sick or somebody in your house is sick, again, I can't reiterate this enough. You wanna be washing your hands as much as you possibly can. So, I'm sure you've seen it everywhere, but we just wanna reiterate it here. Wash your hands with hot water and for at least 60 seconds, or 20 seconds, sorry, for at least 20 seconds or if you're bored of counting to 20, you could sing Happy Birthday two times. There's lots of stuff out there that lasts for 20 seconds that you could try to do to make hand washing more fun. But that's just a huge benefit of... Or not benefit, but it's a huge way of preventing yourself and other people from getting the virus is to keep your hands clean and to not touch your face with unwashed hands.
11:17 RK: Absolutely, and Megan said "60 seconds". If you've got those 60 seconds...
11:21 Megan: Do it.
11:22 RK: And you're excited to wash your hands, don't stop at 20. But please, wash your hands at least 20 seconds. The last thing, I've said it a few times, but I'm gonna say it again, if you are sick, do not leave your house except to get medical treatment and that would be only under the guidance of your doctor. We wanna make sure that Coronavirus kind of stops dead in its tracks and that it's not spreading to other people, and the best way that we can do that is if you're waiting for results, for COVID test results or if you're unsure if you may have it, or if you've been in contact with someone who may have it, that self-isolation, that staying away from others and staying indoors is, it's important for your health, but even more important for the community's health and making sure that Covid doesn't spread and turn into an even bigger problem and a bigger strain on our resources, healthcare resources.
12:21 Megan: Just to kind of piggyback off of that, too, before you stop quarantining, even if you start feeling better, your symptoms start improving, you wanna make sure to call your doctor and talk to them before you leave your house, even if you're feeling great and ready to go, you still could be carrying and you still could pass the virus on to someone else. So just make sure that every step you take is in collaboration with your doctor because they know the best way to navigate all of this. We know this is a scary time for a lot of people, a lot of people, this is the first, most of us, if not all of us have kind of dealt with anything sort of like this. We want you guys all to know that Able South Carolina is here to help. We are still working virtually to ensure that all of our consumers have access to the things they need right now. If you need help please, please give our offices a call, or you can go to our website at Able-SC.org/COVID-19. We have a bunch of accessible resources on there, specifically for COVID or you can use our website to look at the other services that we provide outside of COVID, as well.
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13:44 RK: You have been parked in the Access Aisle, a production of Able South Carolina. Please like and share our content and subscribe for more updates.
Monday Mar 30, 2020
Monday Mar 30, 2020
People who live with psychiatric disabilities are often misunderstood, unseen, and dismissed. In this episode of The Access Aisle, MSW Intern Laura Browning and Advocacy Coordinator Tiffany Namey investigate the prevalence of psychiatric disabilities, speak on the difficulty and necessity of disability pride, and dispel some widely-held myths about people who live with these disabilities every day.
Disclaimer
Able South Carolina is providing this podcast as a public service, but it is neither a legal interpretation nor a statement of local, state, or federal legislation or policy. Reference to any specific product or entity does not constitute an endorsement or recommendation by Able South Carolina. The views expressed by guests are their own and their appearance on the program does not imply an Able South Carolina endorsement of them or any entity they represent. If you have any questions about this disclaimer, please contact our Director of Advocacy and Community Access at advocacy@able-sc.org
Episode Transcript:
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00:15 Laura: It has been 10,840 days since the Americans with Disabilities Act was passed and you are part in the Access Aisle.
00:24 Tiffany: And you are part in the Access Aisle.
00:25 Laura: Welcome, my name is Laura, I'm an intern here at Able South Carolina, I'm studying Social Work, and I'm going to be a future therapist.
00:34 Tiffany: My name is Tiffany Namey, I am the Advocacy Coordinator here at Able South Carolina. I just wanna make a quick statement. When we were deciding whether or not to disclose our specific diagnoses for this podcast, Laura and I talked a lot about the lack of disclosure and if that meant we had a lack of disability pride, and we have decided not to disclose our specific psychiatric disabilities, which will be the topic of this podcast. We want everyone out there to know that you cannot disclose your diagnosis, whether it be a psychiatric disability or a physical disability, and still have disability pride. You can be proud of all of the evolving you have done and the adapting you have done and the person that you are and the unique skill sets that you have and just being you, and the fact that your disability is part of who you are and still not disclose to anyone you don't wanna disclose to. And that was something that we struggled with yesterday, but that is what we decided and so we wanted to share that decision with you. [chuckle]
02:11 Laura: Absolutely, Tiffany and I, we're both really excited to be here and hosting this episode and we do both live with psychiatric disabilities. And disclosure is power, to be perfectly honest. No one needs to know about your disability diagnosis, except for you, your doctor and your boss, if you're looking for accommodations.
02:28 Tiffany: Yeah.
02:29 Laura: Well, in case you haven't guessed, our topic for today is psychiatric disabilities. We're so glad that you're listening today, and I hope you'll check out our previous episodes and our content from 2019. Make sure you subscribe to the Access Aisle, so you can get updates and podcast episodes as we release them. This topic really stuck out to us, because so-called mental illness is often not considered a disability by society at large. For instance, I really didn't know that that "mental illness" was a psychiatric disability until about a year ago. I didn't grow up hearing that terminology ever and I knew I needed accommodations, but I didn't know that's what they were and that you could even go about asking for those things.
03:10 Tiffany: I have multiple disabilities, I also have physical disabilities as well, and all of the disabilities I have are invisible disabilities, every single one of them, and I didn't realize as a person with invisible disabilities that any of my disabilities were disabilities until much later in life, because all of my disabilities manifested in our lessons and I have struggled a lot with recognizing that I need accommodation, so I think that is something that is very common. One of the issues that I see, is that despite the fact that the disability community is built on a cross-disability model, that we're all supposed to be here for each other, building power within our community and we're all supposed to be recognizing the fact that we may have different disabilities or multiple disabilities, we still have this kind of ingrained, inherent bias that there is this ranking system and it's a false ranking system, but it says, "Well, maybe my disability isn't quite as bad as their disability or maybe that person's disability is just a little bit worse than that person's disability."
04:41 Tiffany: And I think that is such a false and damaging perspective to people with psychiatric disabilities because it makes cognitive disabilities and physical disabilities "worse" than invisible disabilities, because they're something that's tangible, they're something we can see. And no one's disability is worse or better than anyone else's, it's about whether or not we can get the accommodations and the access that we need to be the people that we are, doing the things that we are supposed to be doing in society, based on what we want and need to be doing.
05:29 Laura: That's an important point because psychiatric disabilities, because you cannot see them and because they really exist on such a spectrum, it tends to be subjective and if you've never experienced it, you don't really get what it's like, which is tough for us to explain, or try to get help, or even just express ourselves and receive understanding. So let's go ahead and start dispelling the myth that people don't have psychiatric disabilities. [chuckle] For instance, Johns Hopkins tells us that one in four American adults lives with a diagnosable mental disorder or psychiatric disability every year. If you sit in a little cubicle group with four of your co-workers, one of them's probably got a psychiatric disability.
06:09 Tiffany: That's one person at the table when you go out to dinner.
06:12 Laura: Absolutely.
06:13 Tiffany: Yeah?
06:14 Laura: It's not uncommon, that is staggeringly common. [chuckle] We're everywhere.
06:19 Tiffany: About 18% of people ages 18 to 54 in a given year have an anxiety disorder. And anxiety disorders include panic disorders, obsessive compulsive disorders, Post-Traumatic Stress Disorder, generalized anxiety disorder, and phobias.
06:42 Laura: We've also got bipolar disorder, one of the more prominent disorders in the United States, it affects over 2.5% of American adults, and 9.5% of American adults live with a depressive disability, like major depression, persistent depressive disorder, mood disorders. One of the least understood. We've got mood disorders, personality disorders, other emotional and psychiatric disabilities, they're incredibly common. People do not like the word personality disorder.
07:08 Tiffany: Now, I remember the first time I heard that I was like, "There's a disorder with your personality? That's nice." You know?
07:18 Laura: It really does strike fear into some people's hearts.
07:20 Tiffany: Yeah, it's a terrible phrase.
07:21 Laura: Even the people... Especially the people who are diagnosed with it, they come into a diagnosis with just incredible amounts of fear and self-shame because you've really been condition to be afraid of like, "Oh my God, who am I now?" So personality disorder, not the most apt name.
07:37 Tiffany: And that's why we're trying to say psychiatric disability because it is a disability.
07:42 Laura: It's not the medical model version of an innate flaw in an individual. I know one specific personality disorder, Borderline Personality Disorder, has three million people in the United States living with it at any given time. And going off of the high rate of personally disorders, they also have one of the highest suicide rates of all psychiatric disorders. In the United States alone, the suicide rate for borderline is 10%. If you had a physical disability or a physical illness anything that had a one in 10 chance of you dying from it, you would hear about it all the time.
08:18 Tiffany: Yeah, that would be an epidemic.
08:19 Laura: It really would be.
08:20 Tiffany: But most people who die by suicide have a diagnosable mental disorder, and most commonly a depressive disorder or a substance abuse disorder, but people with mood and personality disorders are also one of the highest rates of suicide. And I think that's 'cause they feel a lot of really intense emotion, but also because they're not as likely to disclose as a lot of other mental and psychiatric disabilities. And see right there, we're conditioned to use so many words. Right now, I'm personally going through an issue where I'm trying to stop going, "That's crazy, that's insane."
09:11 Laura: Me too.
09:11 Tiffany: But I say it all the time. These are all social norms now that we're used to saying things to disparage people with disabilities and...
09:22 Laura: Even the people that have the disabilities themselves, we're just... Ourselves.
09:24 Tiffany: Right, we disparage ourselves. I think that that's part of the problem.
09:32 Laura: Yeah, one big thing that we live with as having psychiatric disabilities, is we just face some very pervasive and wrong assumptions about ourselves everywhere we go. Specifically, I'd like to focus on the stereotypes that follows in the workplace, in our personal relationship and like social lives. Number one, I would say, is that we need to be spotted and dealt with. I did some quick research just to see what the public perception is or to find it in writing, how to work with people who have mood disorders in the workplace, or how do you build relationships with people who have psychiatric disabilities, and all the more how to spot someone with a mood disorder, how to deal with employees that are unregulated. And that hurt. I'm certainly not unused to it but it's difficult to feel accepted and encouraged to do your best when there are a lot of workplace stereotypes about you being malicious, or needing to be controlled, or being a detriment to the productivity of the office that you need to be dealt with and put back in the line.
10:40 Tiffany: I know for me that's something that I live in fear of because not only as a person with epilepsy do I have to worry about my physical disability distracting from the productivity of the workplace, but when I'm having symptoms from my psychiatric disability, it can also be disruptive. I know it can be disruptive, but I also know from a disability rights model that we tell people that the best way to learn how to relate to people with disabilities is to get to know people with disabilities. And when I'm having a hard time, when I'm having a moment where I'm having my symptoms, that's when you're getting to know me, 'cause that's me. It's who I am, it's a part of my life. I don't think that's having to deal with me. I think that's getting to know how to work with me. I read a Harvard medical school study, I think I shared that with you.
11:44 Laura: Yes.
11:46 Tiffany: It said that 60% of Americans thought that people with schizophrenia were likely to act violently towards someone else, and 32% of people thought that major depression, that those people were likely to do it as well. Now, if you think, one in four people has a mental illness. That's one person sitting in the booth, getting chicken wings with you. Now they're spontaneously gonna break out and be dangerous, right? People are living in fear of that happening. That same study found that 31% of those people also lumped in psychiatric disabilities with substance abuse. So not only did they think that we were violent, but they also thought that we were using drugs or using alcohol. And while that may be something that is happening, it may also not be. So it was just assumed, and they assumed that we were not going to treatment and we weren't taking our medication.
13:01 Laura: And that last one is really the one that resonates with me here. The biggest point that I want you to take away from this podcast episode is that people with psychiatric disabilities are capable adults. We take our medication, in most cases we go to therapy, we have our best interest at heart and the best interest of those around us that we care about. We're not helpless children and we know ourselves best. And just like anybody else, we try to meet our own needs, and get them met and do the things that help us function the best and build solid relationships and produce good things. So we don't need to be coddled or feared. We're worthy of respect and healthy boundaries just like anybody else, disorder or no. So thanks for bring that one up. Or one of the worst things or the most difficult parts of having a psychiatric disability, especially in the workplace, is dealing with the effects like disproportionate emotional reactions, big emotions if you'd wanna say. And that can be a real barrier to functioning in the workplace with other people who don't understand psychiatric disabilities. Any workplace interaction that might mean nothing to someone without a disability can really weigh on someone and distract a person with disability for hours.
14:20 Tiffany: It can and I think that's kind of what I was saying before about getting to know me. But I remembered reading an article a while back about being on a political campaign and there was some campaign manager and she was talking about whether or not it was okay to be a strong woman and cry. I went back and I tried to look for that and I couldn't find it, but what I did find literally terrified me. There was a woman from UC Davis Graduate School of Management, and she did a study, and NBC published an article about it called Is It Okay to Cry at Work? Now, I'm a workplace crier. It happens to me. I cry when I get frustrated, I cry when I get angry, I cry when I don't understand something, and I try really hard not to, but you'll see that I'll physically start shaking 'cause I'm trying not to cry and it will come out.
15:19 Tiffany: I'll go and I'll hide in my office or somebody else's office. And the article said that people like me were labeled by their co-workers as weak, unprofessional, unqualified and manipulative. They're considered to be treated with kid gloves by their colleagues and bosses, who are afraid to upset them or worried about the employee's ability to be tough. Another study that was referenced in the article found that tearful people, while seeming warmer, were less competent. Their bosses and fellow colleagues considered them less competent, simply because they cried. An article in The Atlantic that referenced the same UC Davis study interviewed 16 high-profile business women. All 16 of them said that showing strong emotion was a bad thing. The CEO of the Girl Scouts was one of those 16 women.
16:35 Laura: Ouch.
16:37 Tiffany: That says something right there. We're teaching young girls that having emotion is wrong.
16:43 Laura: Without a tweak.
16:45 Tiffany: And the president of CBS described crying as giving away your power.
16:55 Laura: I don't know about you all but crying is the number one step on my self-care plan if I'm feeling bad. That is a powerful self-care tool, you all.
17:03 Tiffany: I know people may label me as attention-seeking, and I know that's something I've been accused of my whole life...
17:09 Laura: Me too.
17:09 Tiffany: Since I was a little girl, of being attention seeking. Honestly, the last thing I want attention for is crying at work, [chuckle] or really crying anywhere, showing emotion anywhere. When you're crying at work not only are you afraid of attention, but you're afraid of attention and then the memories of that attention later that your colleagues and your bosses will have.
17:31 Laura: You're having difficult emotions at work is just part of the disability. We don't have them by choice and the consequences are real, along with being called attention seeking. People find these displays of emotion, even if we control them, even if we can hide our office and wait it out and use our tools to get past them, they can really change people's perception of us in the workplace as being impulsive, erratic, attention-seeking, incapable of making relationships. It really can be very alienating when people don't understand that big emotions, as a part of the mood disorder or depressive disorder, an anxiety disorder, any sort of psychiatric disability that comes with inflated and disproportionate reactions, that it's not a choice, there are symptoms of the disability that pervades our life.
18:18 Tiffany: And it doesn't only impact you in the work place either, when I have chosen to disclose or I've tried to explain to people that I've been dating, I have had people refuse to date me outright because they've understood my diagnosis to mean something that it didn't, or they have had bad experiences with past partners, who have had similar diagnoses, but you've had bad experiences with partners who didn't have similar diagnoses. So that would be like saying, "I'm not going to date any more women because I had a bad experience with a person who did not have a psychiatric disorder. So I'm not gonna date anyone who does not have a psychiatric disorder."
19:09 Laura: And that is just, it's one of the feared consequences of disclosure, which is unfortunate that we really do have to fear disclosure or be so careful with it.
19:17 Tiffany: Yeah.
19:17 Laura: And it's important that we protect ourselves in who we disclose to but it's still a barrier that we face in that there's always a risk in the workplace, in personal relationships of when you disclose of being rejected and shamed and that comes from not understanding what these disabilities look like, at the fact that they are disabilities and what they're born from. Many people who live with psychiatric disabilities, as my mental health professional says, they come by it honestly. Certain mood disorders are born directly out of trauma. They're research based to be survival skills, based in traumatic experiences that really helped someone survive in their past, but now just don't fit the circumstances anymore.
20:00 Tiffany: Right.
20:00 Laura: In my opinion, I think a psychiatric disability while it may be called a disability really shows our ability to adapt, shows our capability to be full humans who can thrive in their environment and just have a strong sense of fitting in where they are and being able to work with these disabilities, whether working in an environment, like in a workplace or just relating to other people, the qualities at the core of all of our disabilities are strengths really, and our ability to work with those disabilities is something to be proud of. Oh, do you have anything to add?
20:38 Tiffany: No, I was... It just made me start thinking of just kind of the beauty of neurodiversity, like we have... We just have this wide spectrum of neurodiversity in the disability community, whether it be from cognitive disabilities, or neurological disabilities like epilepsy or psychiatric disabilities. It's this wonderful rainbow of things and I think... I like to say unique skill sets all the time, but I think our unique skill sets or what we bring to the table, and you were just talking about that and it was just making me smile [chuckle]
21:20 Laura: I'm glad. And so just to reinforce we are everywhere. People with psychiatric disabilities are anywhere that people without psychiatric disabilities are. There are so many of us in the work place, and as I mentioned earlier I didn't grow up even into my late adolescence knowing that psychiatric disabilities are actually considered disabilities and have accommodations and have pathways to recourse and assistance and support, and I want all y'all listening to know that there are accommodations that you can rightfully ask for in your workplace and anywhere else you might... And in your education, especially, but anywhere you might need some support. I know a couple of the biggest and most prevalent psychiatric disabilities are depression and anxiety and some of the main symptoms of those are memory loss, difficulty focusing, and stress intolerance, which can be tough to navigate in the workplace. Okay, so we've got this resource it's called A-S-K J-A-N, askjan.org. It's the Job Accommodations Network. You can search A to Z through your disability and find reasonable accommodations for your job. If you, like me, had no real guidance in what a reasonable accommodation for what you need is that is just the number one resource to go to. I cannot recommend it enough.
22:46 Tiffany: I looked at it yesterday for the first time. It was pretty cool.
22:49 Laura: Yeah, so if you look down... If you are living with anxiety or depression, you're having trouble with memory loss, stress intolerance. Some of the reasonable accommodations that we've found on Ask JAN were having some extra time on projects or deadlines, getting break reminder software on your computer, having access to extra training refreshers, getting checklists along with deadlines and even using form generating software, and these are all things that you could talk with your supervisor about that could be provided through your company, or just worked around into your daily life as an employee with very little skin off of anybody's nose, and the big ticket here, if you have trouble with any sort of psychiatric disability that makes controlling extreme emotions really difficult for you, as a part of your disability, you are completely within your rights to talk to your boss about having a flexible work schedule, maybe having the ability to take short breaks, or telework kind of as needed because your psychiatric disability's symptoms are just as debilitating when they crop up as any physical disability symptoms.
23:49 Laura: I know, for one, when I'm at work it helps me a lot to have a private space to do my work. Working in a cubicle means I get incredibly distracted. I get overwhelmed by all the chatter happening and just by the conversations and it really gets to me and makes it hard for me to control my emotions sometimes. So having an office space or a white noise machine or some sound canceling headphones really just eliminates that problem. Other people might need a support animal or access to counseling or therapy through their workplace, and having one-on-one time with your supervisor with a really encouraging attitude. But some supervisors don't have a very open attitude but many, many do. If you talk to your supervisor and say, "Hey, I need you to encourage me to tell you when something's wrong, and when I do, please, I need you to react positively, so we can work through this together."
24:21 Tiffany: And just remember stigma is very alienating. It's difficult to have disability pride when we're frequently rejected and shamed for acknowledging our disability. I know day before yesterday I had a moment and I said, "This is not a disability pride day for Tiffany."
[chuckle]
24:21 Tiffany: But don't let stigma stand in the way of asking for what you need. You don't have to disclose to communicate with your friends and your family what reasonable accommodations you may need from them, but don't live in fear of saying, "This is what I need to make the world more accessible for me."
25:27 Laura: Exactly. Tiffany that was a seriously great point because here at Able, we really believe that people with disabilities have all the tools that they need to speak up for themselves and be self-advocates and ask for what would help them the best. Someone with a disability knows themselves better than anybody else ever will. So if you need something you can ask for it. You need to be able to identify what the problem is, what's gonna help you solve it, and be able to say it, and we know that you can.
25:54 Tiffany: You know what that reminds me of?
25:56 Laura: What?
25:57 Tiffany: Advocacy Day.
26:00 Laura: Yes. You know best.
26:00 Tiffany: Advocacy day is on April 1st, and...
26:04 Laura: Because disability rights are no joke.
26:07 Tiffany: Disability rights are civil rights.
26:09 Laura: They are.
26:10 Tiffany: That's true.
26:11 Laura: Like human rights.
26:12 Tiffany: Yes. We are gonna be gathering on the north steps of the South Carolina State Capital and we're going to be talking about that and more and having a bunch of fun doing it. So I hope that all of you listening out there in podcast land will come and join us for Advocacy Day.
26:34 Laura: Yep, go ahead and head to our website, able-sc.org to register for Advocacy Day and while you're there you can also follow us at Able SC on Facebook, Twitter, Instagram, and on LinkedIn if you wanna get fancy about it. Our website always has resources for you to dig in to volunteer and to plug into everything that we have going on to advance disability rights here at Able SC, and also look out for content in our hashtag access in SC for a positivity campaign and share some advocacy actions and updates leading up to Advocacy Day.
27:09 Tiffany: Awesome. Well are you ready?
27:13 Laura: I am.
27:14 Tiffany: Okay. You have been parked in the Access Aisle brought to you... [chuckle]
27:16 Laura: You have been parked in the Access Aisle a production... [chuckle]
27:22 Tiffany: A production of Able South Carolina.
27:26 Laura: Production of Able South Carolina.
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Monday Jan 27, 2020
Monday Jan 27, 2020
New year, new plans for disability rights!
Our co-hosts for this episode, Robbie Kopp and Sarah Nichols, review some of the highlights from 2019 and drive home the ways to get plugged in and participate in disability rights in 2020. It's going to be a big year for the disability community in South Carolina as we celebrate 30 years of the Americans with Disabilities Act, further competitive and integrated employment, and so much more!
To take action: bit.ly/ablescaction
Disclaimer
Able South Carolina is providing this podcast as a public service, but it is neither a legal interpretation nor a statement of local, state, or federal legislation or policy. Reference to any specific product or entity does not constitute an endorsement or recommendation by Able South Carolina. The views expressed by guests are their own and their appearance on the program does not imply an Able South Carolina endorsement of them or any entity they represent. If you have any questions about this disclaimer, please contact our Director of Advocacy and Community Access at advocacy@able-sc.org
Episode Transcript:
00:00 Robbie Kopp: It's been 10,777 days since the Americans with Disabilities Act was passed.
00:06 Sarah Nichols: And you are parked in the Access Aisle!
00:09 RK: My name is Robbie Kopp.
00:11 SN: And my name is Sarah Nichols, and we are your co-hosts for this episode of The Access Aisle.
00:16 RK: Welcome everyone, and happy 2020. This is our first episode of the year, hope that you'll go back and check out our content from 2019, and that you'll subscribe and get updates as we release them for The Access Aisle.
00:29 SN: Yeah, we've got a lot of good stuff on there. So today we're gonna be taking a look back at 2019, and we'll be looking forward into the new year. 2020 is a very big year for a lot of different reasons. We have the census, we have the presidential elections and we have this 30th anniversary of the ADA. Can I get a woop woop?
00:49 RK: Woop woop.
00:50 SN: And we have very ambitious goals for this year. Right Robbie?
00:53 RK: Absolutely. So right at the start of the year we released our legislative agenda, we're introducing several bills with our state legislators and senators, and we can't wait to get you listeners involved. Let's not get ahead of ourselves, let's look back at the highlights of 2019.
01:14 SN: Well, what would you say were some of the highlights from this year?
01:19 RK: I don't know, there were so many things that were a really big deal.
01:23 SN: I was hired. So obviously, that's a big one. But maybe more importantly, some might say, Able South Carolina celebrated its 25th anniversary. So we've been empowering independence for people with disability since 1994.
01:39 RK: That was a long time ago, and what a half century it's been. 2019 alone, so just one year, provided 11,880 services to individuals with disabilities.
01:50 SN: And we hope to increase that number in 2020. And so looking for a more national perspective, I know one bill that received some attention was the Raise the Wage Act. It received a lot of attention for its potential to increase the minimum wage to $15 an hour. But it would also do something very important for people with disabilities, and that is ending subminimum wage. Robbie, do you wanna explain what that is for our listeners?
02:17 RK: Absolutely. I think what's really interesting is Raise the Wage Act, when it first came through. The House got a lot of attention but didn't really get a whole lot of attention for the huge impact that would have on subminimum wage. So taking a step back towards what subminimum wage is, right now as the rules are written, it is allowable for organizations that get a special certificate to pay people with disabilities less than the minimum wage. So Sarah I'm gonna put you on the spot, how old do you think these rules are?
02:47 SN: I would guess, 75 years.
02:50 RK: 75 years, you were pretty close.
02:52 SN: Nice.
02:52 RK: Really stinking close, too close for me to do the math on. But really, the rules for... We call it the certificate 14C, it's part of the Fair Labor Standards Act from 1938. Because we should follow every 1938 rule in 2020.
03:09 SN: Nothing's changed since then.
03:12 RK: No, just about everything has changed, so I think it's really fascinating that we continue to try to follow something that maybe had some reason back in the past, but really makes no sense at all.
03:26 SN: We have to value the work of people with disabilities by paying them fairly.
03:29 RK: One of the things that I really hate about the subminimum wage conversation is that we find ourselves advocating for the minimum for people with disabilities. Can't even count on minimum wage. And minimum wage isn't high enough as it is. I think, in addition to the really devastating impact that subminimum wage has on individuals is the damage that it does culturally. Because subminimum wage exists, oftentimes employers expect that they can get away with less or paying less for people with disabilities, that devalues disability experience in innovation and it really just doesn't make sense.
04:14 SN: It doesn't. And that brings us to one of the big targets that we're working on at Able SC and through the Hire Me SC campaign. And that is supporting Employment First, which is competitive and integrated employment for people with disabilities. Do you wanna bring our listeners up to speed on what happened with Employment First in 2019 and where we might be going with it?
04:38 RK: Absolutely. So I'm gonna actually go back out of 2019. In 2018 we had been advocating for a bill that would give some clout to an organization, a small commission that would provide input on disability employment in South Carolina. We got all the way to third read on the Senate floor after it made it through the House, and guess what? There was a floor amendment. And the floor amendment changed the bill into a study committee instead of a commission, which functionally may not sound like all that big a difference, but it was a really big difference. So it did pass as a study committee which at least that happened, that is good news. The study committee convened and got together. Our executive director was part of that, Kimberly Tissot was on that study committee along with Mandy Powers Norrell, Representative Mandy Powers Norrell, and a few other folks. And they put together a comprehensive report on a snapshot of disability employment in South Carolina, and that report was released last year in 2019, in May and really has some huge highlights.
05:51 SN: It sure does. Disclaimer, I have not memorized all of this but I happened to have some facts before me here that I can share with you. So this is a very important report because it's really establishing why we need Employment First and competitive integrated employment for people with disabilities. So first, it looks at how South Carolina is behind in some ways. So currently out of the 727,000 South Carolina residents who have a disability, 67% are unemployed, which means that South Carolina has a sixth highest unemployment rate for people with disabilities in the nation.
06:31 SN: And that's the list that we don't wanna be at the top of. So this report also highlighted some states that have become a model for Employment First legislation, because if we wanna change things, we wanna see how... What's been successful in other states as well. And what they found was that 32 states have already adopted policies supporting the employment of people with disabilities, and it looks slightly different in those different states, but it's in the same common principles. But unfortunately, South Carolina is not one of them who has adapted this, so I don't know, maybe 2020 is the year. But Robbie, what do you think a model Employment First State might look like?
07:08 RK: There are so many things that states can do to further Employment First. And Employment First is really that idea that for serving folks with disabilities, the first and preferred outcome is competitive and integrated employment. So every one of those words packs a punch. We wanna make sure folks are working, shoulder to shoulder with people without disabilities, and that they're getting paid a fair wage, making the same as their colleagues and co-workers in the field. So what we see as really positive steps towards that is the state, potentially as a model employer, so here in South Carolina, the state has purview of over about 92,000 positions across state government and through state government contracts, which is a huge number. If we found that we could be inclusive in hiring 92,000 positions in, and with representation in every single county, that could have a huge cultural shift. We also know that there's a lot of service providers that have... That they answer to state government in some way, and really making sure that those service providers are pushing towards competitive and integrated employment, not sheltered workshops, not enclave employment, not contracts they have with companies so that they can do the work off-site and pay people pennies on the dollar.
08:27 RK: It's not what we're looking for, we're looking for competitive and integrated employment. There's a few challenges that we've gotta continue to address in South Carolina. We don't have any statewide incentives for hiring people with disabilities, we don't have good data on what our utilization rates are right now, which I think is a huge problem. We don't know if we're doing well or poorly, based on employment data. What we do know is that, from demographic data, about two-thirds of folks with disabilities in South Carolina aren't working right now. And that's not where we wanna be, especially as... The last number, I checked this out a couple of days ago, the last unemployment number for South Carolina, the unemployment rate 2.6% in October, which is... I don't know that I would have ever expected it to be that low and it's probably gonna end up getting lower over the next few months as well, but knowing that two-thirds of people with disabilities that are working age aren't working right now, there's definitely a clear gap here.
09:30 SN: 'Cause if you put yourself in the perspective of a business owner or an employer, you might be hiring for certain positions 'cause you're trying to grow your company, and you're having trouble actually finding anyone to fill those positions because the employment rate is so high, or the unemployment rate is so low. So you have a problem there is that you need good candidates to help make your company better and you're not finding them, well here we've just perfectly listed, there's this huge untapped workforce of people with disabilities who... They can work, and they want to work, often they're seen as incapable of doing the job, or the ways that they might do something differently, is perceived as not being able to do it correctly when that's just not true, or they might have the perception that they don't want to work, but that is very often not the case, and it's the perfect solution to the problem of the labor shortage that we're currently facing.
10:21 RK: Yeah, and we've talked some about employment in a previous podcast and we really had kind of a personal spin on that, from a colleague, Cali Sandel and what her experience has been on employment. So feel free to listen back to that podcast episode. Also, I think it's super important to think about where we're headed. So with employment, it's a fairly complicated problem, but the math just makes sense that employing people with disabilities is what should be the norm, and I think that that math kinda puts pressure on employers for us to get there. But really I think there's more room for us to understand what the particular pitfalls are in South Carolina, which is why I'm excited in 2020, there is legislation that's been introduced that would set up the Employment First Commission, as we had hoped for the year before last, I think being able to have the study committee and have a study committee report and have some of the problems clearly laid out gives us shoulders to stand on, as we address employment barriers in South Carolina. I would say employment of people with disabilities is a non-partisan issue, and we're super excited that out of the gate, there is bipartisan support. The two sponsors are Representative Collins out of Greenville and Representative Powers Norrell out of the Lancaster area. So we have folks on both sides of the aisle that are really wanting to address disability employment gaps.
11:55 SN: Because this is an issue that impacts everyone, it also benefits everyone, if it's integrated. So the name of that bill is the Employment First Initiative Act and the current number of the bill is H4768. And if you are listening to us right now and you're thinking, "Yes, that's great. People with disabilities can work, they wanna work. How can I help?" You might be asking, well, one great way to do this is by contacting your representatives and letting them know about the issues that you care about. But more on that later, we are also working on two other bills that have not yet been introduced, but will be soon, which are the Disability History and Awareness Month Bill and The Supported Decision Making Act. Robbie, aren't you excited for these two?
12:42 RK: I'm excited for both of these, and Sarah, you just mentioned contacting your law makers and being part of that process. You're not alone if you're thinking about doing that so we're gonna be releasing a podcast that kinda walks you through the steps, how do you make a relationship with an elected leader. So more to come, don't wait for us but if you feel like you need a little extra support there will be a podcast episode coming on that topic specifically.
13:08 SN: Absolutely.
13:09 RK: But let's talk a little bit about the other legislation that we're gonna be angling for in 2020.
13:16 SN: Yeah, so I've been really excited about the potential for a Disability History and Awareness Month that is established within the schools. So I can only speak for myself but I know that as a student going through the public school system in South Carolina...
13:31 RK: Public school yehey!
13:32 SN: Public Schools. I never learned about disability history or rights and even when we did learn about historical figures who had a disability like FDR for example, that was never actually brought into the conversation. So this is something that a lot of us who are even now integrated into the movement didn't learn about until much later in life even if some of us had disabilities and didn't even know it.
13:56 RK: I think the biggest takeaway from me, from public school and FDR was how much he had to hide his disability so if there's one takeaway from a leader that has a disability and that one takeaway is that they had to hide, that's just not... Not a great sign. I think there's so much more that we can do around disability awareness and really touching the historical aspect of that.
14:20 SN: And teaching about disability history there's so many benefits to that as well beyond just being aware of your own history.
14:29 RK: Well, nice yeah. I think when once students with disabilities were able to see a role model, someone that they can look to and identify with and see, "Hey, this diagnosis or whatever is going on with me isn't the death sentence that my doctor said it is." or "It isn't the the death sentence that my school guidance counselor thinks it is." I think that's just hugely important. We have historical figures from a lot of different places, a lot of different walks of life that have experience with disability and having those role models are hugely helpful and then I think just the disability rights movement itself and seeing the disability community rise up and organize and get connected with other rights movements and share in struggle and host sit-ins and chain wheelchairs to public transit I think it's so important to see that disability access is something that we have to fight for, but there's also the success that we have had in disability rights and making sure that we're kind of standing on those shoulders, we're about standing on shoulders today.
15:43 SN: Who are you stepping on Robbie?
15:45 RK: I don't know, but being able to build on that work and legacy and really that is a huge part of 8830. We do a lot of just basic disability sensitivity training and when I'm providing that training to pros in the field I always ask, how long people with disabilities had equal rights under the law? And I hear all kinds of things and usually it's somewhere in the '60s or the '70s but the truth is the struggle for access has gone on much longer than that and the biggest win of that movement with the Americans with Disabilities Act isn't that old from a historical perspective so we've...
16:26 SN: Only 30 years ago.
16:27 RK: Only 30 years. So we've got to continue that work in progress and you can't continue on it if nobody ever tells you that it happened.
16:34 SN: Exactly and we are lucky that we have Women's History month, African-American history month, and all these great things so that we really learn about leaders in these movements, in these marginalized communities and we just want disability history to be included in that and taught as well. I don't think we mentioned this but it's also learning about this is really great just for fostering individual disability pride, it can even help decrease bullying around disability in schools because for people who do not have disabilities who might either be unsure of how to approach a person with a disability just 'cause they've never been taught about it, this kind of helps bridge that gap and just really fosters more understanding in an age where kids are really trying to learn more and just understand the world and everything that they're seeing.
17:28 RK: Yeah, and I think once we talk about that personal perspective, being able to see where you fit as a person with a disability historically and what you've had to fight for, I think the level of empowerment that brings is really closely related to this supported decision-making idea that we're trying to press legislatively this year as well. So right now without an alternative, a recognized alternative to guardianship, a lot of families and a lot of school personnel and doctors feel like if I'm involved with a young adult with a disability the only option for me is to get a guardianship when they turn 18.
18:06 SN: Let's pause for a minute there and let's explain what guardianship means. There is a bunch of different types of guardianship and it can look different ways but let's just...
18:16 RK: Let's keep it on the simple side and we can dive into this issue...
18:21 SN: In another podcast, so keep listening.
18:22 RK: With another podcast, or with other content that we can host. So in broad strokes, the idea of a guardianship is something that is court-decided, and when someone has a guardianship, it basically takes away their legal ability to make decisions for themselves in some cases, that even includes the right to vote. So it can be incredibly limiting where an individual can't sign their own checks because that's signing a legal document, they can't sign other paperwork, disclosures, all kinds of things, and they're really reliant on this person who is an appointed guardian to make those legal decisions for them.
19:06 RK: Once someone is in a guardianship, the only way to get back out is through another lengthy court process. And what we're seeing is if there's an alternative that could be recognized legally in South Carolina as a way to support the decision-making people with disabilities, then maybe people wouldn't be funneled into guardianship as often as we see right now. So that's really the focus on supported decision-making. We... Supported decision-making is a recognized term. You may see SDM for short. What we're going for with supported decision-making is really just a legal recognition of how everybody makes decisions anyways.
19:42 SN: Yes. And we know that parents or guardians, when people are under 18, are really trying to find the best options for their youths with disabilities, but they might not always know what all of those options are. And supported decision-making is just another great option to have. It would allow people with disabilities to still be in control of their own lives and their own decisions while still having a trusted group of professionals and family members in place to help guide them in their decisions. 'Cause that's how everyone makes decisions, right?
20:17 RK: For those listening, if you've made a big financial decision, a purchase of a car, a house or anything like that, I'm sure you asked some experts that you trust, either about houses or cars, or finances or all of the above.
20:30 SN: Yeah, I know I consulted a lot of people before I decided to adopt a dog, maybe even more people than I needed to, but it was a big decision and I wanted to make sure that I was committing to something that would turn out well [chuckle] and would be good for me.
20:41 RK: Absolutely. Well, that's so much of what supported decision-making is. It's having that circle of trusted advisors and allies and keeping the individual's ability to decide for themselves completely intact. So we'd love to see recognition of supported decision-making as an alternative to guardianship in South Carolina.
21:03 SN: We sure do. So that kind of covers our main legislative agenda for 2020. So we talked about employment first, disability history and awareness, and supported decision-making. Of course, there are several other things that will come up in the course of the year that we might support and share information about, but this is kind of the crux of our 2020 year and what we're gonna be taking action on a lot.
21:29 RK: Yeah, these are state issues. So on the state side, we have already released a summary overview of our legislative agenda, and we'll share that wherever you get your podcast, check back at the Podbean website, and also on Able SC's website for each episode listing where you can get a link to that targeted action. Because right now you can fill out a very simple form, contact your lawmaker and let them know that disability rights are important to you, and that you want them to keep an eye out for employment, supported decision-making and disability rights history integration into education. So get involved.
22:08 SN: Yes. Yes, and I love this system so much because it's so simple and it kind of takes some of those lengthy bureaucratic steps out of the process for you. If you are listening right now and you want to jot down a quick link, I do have a shortened bit.ly link for you. So I'm gonna say that, but we will also link it down below in case you didn't catch it. So the link would be bit.ly/ablescaction. If you enter that in, it'll take you right to our form where you just put in just a little bit of information and the website will identify your state representative and senator for you, so you don't even have to go in knowing who those are, but you will when you leave. And they'll provide you... We will provide you with some talking points so you can customize your message but still have some guidance on what you might wanna say, and then you email it out to them and you're done. Easy-peasy.
23:06 RK: You can also tweet it. So the platform will walk you through on how to tweet the action that you took, and even flag your lawmaker and make sure that they're aware of what we're looking for in 2020.
23:19 SN: 'Cause some of these lawmakers do like to be active on Twitter, and it's a way that they engage with their constituency. So that's sometimes a way to get a faster response than via email, but I think both are very important. And social media is also a great way to encourage your friends to also take action. So now that we've covered our main goals this year, what can we look forward to maybe on a larger scale? [chuckle]
23:43 RK: We know there is a ton of content in this podcast episode, so I hope that you will take the time to listen, re-listen, share...
23:51 SN: Take notes.
23:51 RK: Take notes, share it with a friend, talk with a friend about it after they get to listen. But there's really a lot going on. So we've covered the state legislative agenda. Now I wanna share with you some of the big picture, a few federal issues that are going on right now so that we can be aware and be active with that. First is we're gonna be celebrating the 30th anniversary of the Americans with Disabilities Act.
24:15 SN: Whoa!
24:15 RK: Yeah! The ADA is huge. It is a piece of civil rights legislation focused on disability access that covers employment, it covers governmental programs and services, it covers public places, like private businesses, movie theaters, restaurants. It also covers telecommunications and protects people when they exercise their rights under the ADA. So it's really monumental, and it's so important that we celebrate it. I wanna share too that it's especially important that we celebrate it and the people know that we're proud of the Americans With Disabilities Act, because it seems to be under almost constant assault. Right now there is a House bill, the United States House of Representatives, it's HR4099, 4099, and it would basically gut the current enforcement arm of the ADA and make it so individuals with disabilities would have to inform a business that they have been discriminated against by their building, exactly what's wrong, how to fix it, and then wait for a response from that business.
25:04 RK: That response may take a month, and in that response, they don't even have to say, "I fixed it already." They can say, "I'll fix it in six months." So really, seven months of waiting around for barriers to be removed after 30 years of waiting doesn't make a whole lot of sense to me. But it does appear to make sense to Representative Joe Wilson and Representative Tom Rice, two South Carolina representatives that have signed on to support this bill. Let's slow the train and make sure that they know the negative impact this would have on the disability community.
25:04 SN: Yes, that's very important. And speaking of the ADA, anyone who's listening today, you're hearing this first, but we will be having... [chuckle] I think Robbie is hearing this first, too.
26:15 RK: What is it?
[laughter]
26:16 SN: He looks very interested. We will be hosting events throughout the upcoming summer to celebrate the ADA and just fostering disability pride in general, and that's something we're gonna want the whole community, and all intersectional communities involved in. So definitely be on the lookout and stay tuned for more information on that soon, but we will have exciting stuff going on this summer.
26:39 RK: Woo-hoo! That's what Dory would say.
26:42 SN: That is.
26:44 RK: Another really big federal movement that we're seeing right now is the census. The census happens once a decade. I expect that we'll dedicate a whole podcast episode... I'm not sure how many podcast episodes we've promised in this one episode, but they're all coming.
27:00 SN: We're gonna have to get started.
[chuckle]
27:02 RK: For the census, we're gonna talk about really the value in being counted and the impact that an accurate count has. We know that people with disabilities are less likely to be counted in a census and we'd like to turn that on its head in 2020. There are so many federal resources and dollars that could come back to South Carolina when we have the accurate counts, people with disabilities, people without disabilities, making sure that we're getting our fair share in South Carolina. So that's huge. There will be specifics directly from the Census Bureau that you'll be getting starting in March. And Census Day is on April 1st.
27:44 SN: April 1st. What a funny day. It's April...
27:46 RK: Funny day.
27:48 SN: It is. It's April Fools Day, but you know what it also is?
27:52 RK: I have a feeling I know. It is also Advocacy Day for Access and Independence.
27:57 SN: How'd you know?
[chuckle]
27:58 RK: Advocacy Day for Access and Independence is a huge event. It is the disability rights celebration at the State House that takes place each year. We are holding it on April 1st. Disability rights ain't no joke, but we are having it on April Fools Day anyways. It's also Census Day, so the day we celebrate the census will also be the day that we celebrate disability rights. And really, one of the key messages that's gonna come out of that is, "I count." Because it's so important that every one with a disability is counted. We're not talking about tracking you, just talking about getting an accurate count so that the feds know how to allocate transportation dollars and housing dollars, and so many other dollars back to South Carolina.
28:44 SN: And like we were talking about earlier in not having sufficient data in some of these areas, being counted in the census will help with that. Going back to Advocacy Day, if you are listening and you haven't been to one before, or you might be curious about it, it is awesome, first of all, just thought I'd throw that out there...
29:04 RK: I think so.
29:04 SN: But it's also a great opportunity to really show the power that people with disabilities have in our community and in the legislative process. I know last year we had, I think over 20 partners involved, and we had about 600 people turn out at the State House...
29:22 RK: 587 was our peak count at Advocacy Day.
29:25 SN: And that really demonstrates the power that the disability community can hold and that we want to share a voice and we want to be counted. And it's also a really great introduction to people who might wanna get involved in the legislative process, or just wanna find a community of people who care about the same issues that they care about. So it's really like a great introductory moment or a place to expand upon your activism.
29:53 RK: Absolutely. It's kind of a jump-off point. I think a lot of times for folks that haven't been evolved or... Evolved, weird. Haven't been involved in a political process...
30:04 SN: You've probably evolved.
30:04 RK: Yeah, some way or another. Haven't been involved in a political process, Advocacy Day is a really great way to see how easy it is to get in front of the folks that are elected to serve us at the State House, get in front of the folks that make decisions on what our life looks like on a day-to-day basis, and it's also just a really fun, easy day to come and hang out with people from across the state with a lot of different experiences, all raising one call for access and independence.
30:36 SN: Mm-hmm. Talk about community.
30:38 RK: For sure.
[chuckle]
30:40 SN: Again, that's April 1st. So if you're interested in attending, of course it's free to attend, it's a public event, but we do like to have an idea of the numbers of people who will be attending. So if you go to our website, able-sc.org, you can find a link to register on there, or you can check out Advocacy Day's own website...
31:05 RK: Unlockingbarriers-sc.org. Check it out. What's really cool and what I'm especially excited about in 2020 is we're gonna... We're encouraging people to take individual actions of advocacy leading up to Advocacy Day. So we have three issue areas that we're really focusing on transportation, employment and public access. These things are not new. The barriers that exist in these areas aren't new to the disability community in South Carolina, but this is a year that we're gonna take some really direct action on how to remove those barriers. So public access, we are asking people to share positive posts about what is accessible in the community. What works for you? Where do you like to go? Where do you like to be? How can we show that there is a benefit, a public benefit to accessibility? Another is transportation. Taking a ride with a community leader. If you use public transportation where you live, chances are, your elected representation has not used that public transportation resource.
32:09 RK: So take a moment, invite them to take a ride, ride with them, talk to them about what's important to you and help them get a fuller understanding of disability. Also for employment, we are putting together an employment first pledge and hope to be releasing that super soon. It is a way for individuals and employers and elected officials and service providers and educators to all make one pledge to further competitive and integrated employment in South Carolina. And it doesn't sound as complicated as [chuckle] it may seem. There are action steps that we can all take now to further disability employment. So we'll be taking these actions leading up to April 1st. You'll see information about that on social media, on e-blast, if you're subscribed. If you're not subscribed...
33:01 SN: What you waiting for? [chuckle]
33:02 RK: Yeah, go ahead, subscribe. You can even subscribe while you register to attend Advocacy Day. So two birds, that's short for two birds with one stone, and it's actually kind of aggressive. And I'm sorry I used that reference. But yeah some really great things that we can do. So I would encourage you all to look at or look out for content that's coming through #AccessInSC, that is the hashtag that we're gonna be using for this positivity campaign and to share advocacy actions leading up to Advocacy Day, and really following Advocacy Day too.
33:38 SN: Yep. And follow Able Sc on Facebook, Twitter, and Instagram, and LinkedIn if you're fancy, and we'll be sharing all of that stuff as well. Whew! So, I know we just...
33:50 RK: 2020, man.
33:51 SN: 2020, there's so much going on, and probably even more that we can't even imagine yet. But I know we just threw a ton of content at you, a bunch of ideas. This is just kind of an overview podcast. So since we promised you about 20 more podcasts in this one episode, you can expect a more in-depth dive into a lot of these topics, as well as our website, social media, always host more resources and where you can learn more about some of this.
34:20 RK: Get plugged in, make that the 2020 resolution. Get plugged in to disability rights, subscribe to the podcast. Get plugged into Advocacy Day. Get plugged in to our social. Just do it. 2020 is the year for disability rights.
Friday Nov 15, 2019
Friday Nov 15, 2019
Veterans have paved the way for generations of disability rights advocates. In this episode, Boris is joined by his good friend, US Army Staff Sergeant Andrew Lanman as we try to give back to our vets by talking about the services available for service disabled veterans and veterans transitioning back into civilian life.
Disclaimer
Able South Carolina is providing this podcast as a public service, but it is neither a legal interpretation nor a statement of local, state, or federal legislation or policy. Reference to any specific product or entity does not constitute an endorsement or recommendation by Able South Carolina. The views expressed by guests are their own and their appearance on the program does not imply an Able South Carolina endorsement of them or any entity they represent. If you have any questions about this disclaimer, please contact our Director of Advocacy and Community Access at advocacy@able-sc.org
Transcript
Boris Klaric: Good morning, everybody. Thanks for joining us for another episode of the Access Aisle. As always, my name is Boris Klaric, and joining with me today is US Army Staff Sergeant Andrew Lanman. How are you doing today, buddy?
Andrew Lanman: Good.
BK: Well, thanks for joining us today. We are observing Veterans Day, and all the work that veterans have done not just for our country but especially in the realm of disability rights and disability advocacy. Can you tell me a little bit about what it is that you do, and the kind of things that you experienced working with the veterans with disabilities?
AL: I originally went into the Army Reserve as an MP. I was 18. I wanted to do law enforcement, at least I thought I did. That's a hard job. I joined at 18 in 2006, 2005, somewhere in there.
BK: Right out of high school.
AL: Pretty much right out of high school, yeah. I took a year off. I was adamant I did not wanna join the military, but I was told that I can either join the military. If I wanted to go to college, I'd have to figure out how to pay for it, and so I joined the military. That was the only way I was gonna pay for school. I joined the military 2006, 18 years old, 'cause it was the only way I could be in law enforcement and not be 21, 'cause you have to be 21 to do civilian law enforcement 'cause of the whole firearms laws. After seven years, I decided I didn't wanna do it anymore, and I switched over to psychological operations which is like, in my opinion, the best MOS the Army has. We work a lot with civilian populations in other countries and things like that. We do a lot of... It's marketing and advertising, and it's trying to get them to stop doing or to do an action that's beneficial to them.
BK: Got you.
AL: Graduated from Limestone College in 2015, with my Bachelor's Degree in Social Work. And then I went to University of South Carolina, graduated with a Master's Degree in Social Work. And it took me a little while. I applied here, there, and everywhere. And I knew ultimately I wanted to work at the VA, and I never imagined that I'd get it right out of the gate. Actually today is my two-year anniversary there.
BK: Nice. Congratulations.
AL: Mostly what my work deals with is the disability claims that they put in. It's not so much like a disability paycheck, when you think about it in terms of that goes, like a Social Security Disability or something like that. It's actually... And this was something that I learned when I first started working there, is it's more... It's compensation. If you think about it, you have 100% healthy body or 100% able body, when you get that disability rating from the VA, let's say you're 30%, 40%, whatever you are, that's 40% of time that you would otherwise have to, if you were able-bodied, give to an employer, that 40% of time, that compensation that those benefits are supposed to go towards making up for that pay gap. That would be time that you would normally be at work, you're spending at doctor's appointments and things like that.
BK: Okay. So, at that point, factoring the time that's spent on the disability, and mitigating symptoms and factors related to that transition?
AL: Right, yeah.
BK: Okay. What have you noticed about the types of disabilities and the types of claims that you're seeing that are popular or prevalent?
AL: A lot of it is gonna be your musculoskeletal stuff, like your bad backs, bad knees, bad joints, things like that, and some mental health issues. PTSD is a big one. We've all heard that 22 A Day thing, where we're trying to prevent veteran suicides, and it seems like every other... Just about every other week, you're hearing about another veteran who's committed suicide. That's one of the big issues right now, is definitely the mental health. We've gone from not even actually having a diagnosis. They called it soldier's heart in the Civil War, and then moved forward to Vietnam era, and now you have shell shock. And so now I see a lot of older veterans coming in, and claiming mental health issues and PTSD for some Vietnam veterans first time ever. And that war ended in the '70s.
BK: What do you think some of the barriers were preventing them from seeking that care out sooner?
AL: I think a lot of it veterans are hard-headed or stubborn. A lot of it is we don't wanna ask for help, because we don't necessarily see that there's anything wrong with us. We don't want people to see us as broken or anything like that. And so a lot of that is invisible. Personally, I have TBI from getting blown up when I was in Afghanistan, and I also deal with PTSD, and I have some musculoskeletal issues, too. It's rough on the body. And so that's one of the big things is, when you're young, you feel like you're invincible, and then you start to get older and you're like, "Oh, man, I guess I got messed up a lot worse than I thought I did." And so we see a lot of the older veterans coming in now for the first time. Vietnam, those veterans, they really got the short end of the stick when it came to that kind of stuff. And so we've seen a lot of things come out of just those veterans, like diabetes from Agent Orange exposure, which is the herbicide agent that they were using to defoliate the force over in Vietnam. A lot of what we call presumptive things, like the musculoskeletal issues, and some other stuff like respiratory issues out of the Gulf War, first and second Gulf War in Southwest Asia. And there's a lot of things that go into that that a lot of people don't really know about. There's a lot of things that you get to... Old Uncle Sam stays with you once you get out of service. And you don't really realize it, and some of it takes several years to manifest. And so you don't really realize how bad it is. And then on top of that, it's the not wanting to ask for help thing 'cause you're a soldier, you're strong. You don't wanna show weakness. That's a lot of it, I think, is wanting to avoid that image of weakness, which now, knowing and being older, it's definitely not weakness if you need help. It's something you should do, ask for help.
BK: Yeah, absolutely. What type of resources do you feel like you want your fellow veterans to know about?
AL: The education money that's there for disabled veterans. We have VR&E, which is Vocational Rehabilitation and Employment, not education, which a lot of people think it is education. But it's counseling services that you have available to you as a veteran to help you get that vocational training and rehabilitation and employment ideally, 'cause that is something a lot of people don't understand. Yeah, you can be 100% disabled through the VA, but you can still work. And that's one of the things that the VA does try to do, is to help veterans find employment. And there's a lot of employers out there that are willing to hire veterans just because they're veterans.
BK: Absolutely.
AL: I'm a service-connected veteran, too, and I work at the VA and that's... The biggest joy I get out of it is helping other fellow veterans. I might not ever see them face-to-face, one-on-one, but seeing what they're going through and some of the issues that they're dealing with disability-wise, and knowing that I was a part of being able to help them in some way, is a huge benefit for me.
BK: That term you used, "service-connected vet," what does that mean?
AL: Service-connected entails... There's a lot of laws and regulations that govern it. And basically what... The layman's definition would be anything that you have, if you have a disability, like if you hurt yourself in service and now you're no longer serving, you have service-connected disability. And so that's basically where the VA finds that you incur this injury or you did something in service to cause this disability, and it's considered service-connected, so it was caused by service.
BK: How common is that amongst, you feel like, the current generation of active duty?
AL: Pretty common.
BK: Pretty common?
AL: Pretty common. Like I was saying earlier, a lot of people don't even really realize that it's considered a disability. I mean, it is, especially the invisible wounds, like the mental health stuff.
BK: Yeah.
AL: Yeah. It's been a lot of veterans pushing for that, because when you think of disabilities, and it's unfortunate, you think of your deserving populations and those who, although this isn't their fault... Well it's not really anybody's fault. You have veterans, and it's a good face to put on something. They didn't even have... Veterans didn't even have disability rights until not long after World War I.
BK: Yeah. World War I is how we got service animals. It was because of the effect of mustard gas and so many people coming back blind, that they had to... Those hospitals had to find a way to, "How are we going to accommodate now these thousands and thousands of returning troops that have these needs," and they were directly as a result of their service.
AL: Right. And the big thing is when they marched on Washington after World War I and they were trying to get these benefits, they were actually hosed off the street. A lot of people don't realize that. They were veterans, US service member, former service members were marching on Washington to get some kind of compensation for being sent to this war and coming back catastrophically injured, missing limbs and eyesight. We don't see a whole lot of mustard gas and lose sight claims anymore, 'cause that stuff is not really supposed to be used on the battlefield. But a lot of the stuff that came out of that, we're still seeing today. Parking spaces for physically handicapped individuals, that came out of that. But they were actually hosed off the streets. They had their little camp outside of the White House, and they came out and this riot police just hosed veterans off the streets, and then somebody was like, "That's not right." That's where we got a lot of our initial disability laws and stuff from.
BK: From your perspective, what's missing? Because we know laws are not all-encompassing, we can't fix every single issue that's going on with legislation, as much as we try to. What are the gaps currently that are hurting our veterans?
AL: I just think that it's a bureaucratic process, so there's a lot of red tape that goes into it. I can look at a claim for a back injury on one veteran and a claim for a back injury on another veteran, and there's a checklist of laws and regulations that go into what is and what is not service-connected. And one of the biggest issues I see is... And they've done a lot for it, is having to prove that this is something that was caused by service. And so now we have a lot of these presumptive things that I was talking about earlier, where we know that if you were in the military based on your MOS, or your Military Occupation Specialty, what your job was in the military, you're more likely to be exposed to certain things and others. For example, an infantry person is probably more likely to have really bad knees, ankles, and back from having to carry all that heavy stuff around, or bad hearing or tinnitus, the ringing in the ears, a lot of that stuff.
BK: And so it's gotten a lot easier for that, but it's still hard. You can't... The old saying, "You can lead a horse to water, but you can't make it drink." So, I think, if there was more awareness on what is actually available to veterans through the VA, for example, if you have loss of use of both feet, there is actually a grant that you can get to help you get money for specially adaptive housing or specially adaptive automobile equipment.
BK: And this is for veterans specifically?
AL: Mm-hmm, for veterans specifically. You have to meet certain criteria. There's a lot of laws and regulations that go into it, but once you get that, it's a grant. And I know that if you have prosthetics, you can get a clothing allowance, too, which is recurring every year. You get a certain amount because you might have to have garments altered to accommodate your prosthetic.
BK: Okay. I know earlier we talked about one of the things that keeps veterans from seeking care is that mental barrier of, "This isn't a problem," that showing weakness. Do you think that that's a culturally inherent thing in the military and that that's possible to change, or is that the cost of doing business?
AL: A little bit of both, honestly. I've been in for about 13 years now, so I've seen a huge change in that, because we went from peacetime Army in between wars in the '80s to now, the first Gulf War in the '90s, flash forward a couple of years, we've been at war in Afghanistan, in Iraq now since 2001 timeframe. So, the keeping it quiet and sucking it up and driving on thing has really gotten a lot better. Plus there's a bigger emphasis on the hazing thing, that's been really cracked down. The joke around, it's a "kinder, gentler Army." In reality, we still have the training, we still have the expectations, but I think now it's getting more... This is why, in the past, there have been such worse injuries and ongoing issues, and veterans seeking help for the first time. They might have got out 10, 15 years ago, 20 years ago, because of that culture from the past. And now the culture has shifted with more of an emphasis on seeking that help.
BK: Do you think it's easier now to find those services? Do you think they're more available than they were in previous decades?
AL: I think so, yes, 'cause we've been at war for so long now, so I think that there are a lot of those organizations out there, like Wounded Warrior Project, Folds of Honor, which help scholarships for fallen veterans' families' independence. There's a lot more of those services out there now than there was in the past, and that's also helped for veterans to be more active and actively seeking those benefits.
BK: What is something that... So you would want service providers to know as they're trying to reach this community and get people into care, what are some things that we need to keep in mind in being accommodating for and including veterans?
AL: Most of us are stubborn, speaking from personal experience. I don't really like to go to the doctor, but when I do go, it's generally because something's really not right. And so I think one of the things to be most aware of as a service provider or a medical service provider for a veteran is that if... They're coming to you more likely because they really actually realize that there's an issue. And they're hard-headed. [chuckle] We do, it's AMA, against medical advice all the time. I just had back surgery for my back not too long ago, and I had to constantly remind myself I can't do that yet, I gotta let myself heal. That's probably one of the biggest things, is we're stubborn. And the whole seeking help in the first place is against what is culturally acceptable, what's socially acceptable within the military culture.
BK: We already know that coming from active duty back into civilian life, that's a transition. And then adding disability to that transition, what are some unique things that veterans with disabilities are facing when they're trying to adjust back to life after the military?
AL: Slowing down. I think that was the biggest thing. I have a couple of deployments. I've been in the Reserve for 13 years. My only active duty time really is deployment. And it's such a huge change of pace coming back from that side and having to turn that switch off. And now you're back in civilized society, and you have to slow down and you have to realize that not everybody has a lot of the same training and a lot of the same stuff that you saw and went through. And that was one of the biggest transitions. I hear a loud noise, and I'm looking around for what caused it, where it came from, and nobody else is freaking out, and that causes my anxiety to go even higher. It's like, "What's wrong with you? What are you... "
BK: You feel like that extra spotlight is on you now because, "What are you looking for?"
AL: Yeah, 'cause now I'm freaking out and I'm looking around trying to figure out what's going on. And nobody else is doing anything, and I'm getting upset that they're not doing anything. And now I look like the crazy veteran on the...
BK: And it spirals from there.
AL: Yeah. That was one of the biggest transitions, is just slowing down, taking a breath and not... You know.
BK: Yeah. Last month was National Disability Employment Awareness Month, and we really celebrate the efforts to get people with disabilities back into the workforce, back to working. What is something that you would want an employer that maybe hasn't thought about a veteran with a disability for a position, or hasn't really thought about what it would take to court that population back to work? What's something that you would want that employer to know?
AL: Just be patient. Hard workers. Most people I've met in the military that are veterans are hard workers, and they're willing to dedicate themselves to accomplish the task. That's what we're... I hate to use the word "indoctrinated" into, but that's basically what it is. We have our Warrior Ethos and it's, "I'll never quit. I'll never leave a fallen comrade." Then there's a couple of others. The commitment to the mission is there, they might just get frustrated with their co-workers sometimes. It happens.
BK: Yeah. But they're really process-oriented.
AL: Yes, exactly, definitely process-oriented. They wanna know what the end goal is and anything that they can do to help get there.
BK: That's something that any business model can benefit from somebody that's ready to just pick up the process and...
BK: Are there services for vets in that same breath that can help them find jobs when they get out?
AL: Yes, the VR&E that I was talking about earlier.
BK: So, they'll work with active duty that already have their end day and their paperwork?
AL: Right, yeah. They'll start getting you worked on, getting enrolled in school, if that's what you wanna do. They'll start working on helping you find employment, if that's what you wanna do.
BK: And what are the... Are we seeing... Have these programs been around long enough for us to see the outcomes and the benefits for those veterans that are using them?
AL: They've been around for a while. I can't really speak to the outcomes and the measures of effectiveness. The laws change all the time. I guess you were asking me earlier if I could think of one thing that I wanted the veterans to be aware of. It's that you don't see it immediately, but your voices are heard. The committees and people that they have up in DC, they hear you. We recently just re-did the appeals process, and I think it's a lot better than it used to be. They used to have veterans waiting three to five years for an appeal to be heard. Now, they can still go that route, if they want, but now they have other options, so it's a lot quicker turnaround. Voices are being heard. The laws are changing constantly. It has gotten so much easier as the time goes on, especially now with everything being digital. It's all computer. There's no paper claims folders anymore. Yeah, it's come a long way. It's come a long way, and I love it. Laws changing all the time. I mean, it's stressful because you learn one way, and then you're told... Every quarter, every time the regime change happens up in Washington, and they want this to be done versus this not to be done, and it's getting better and better and better. Voices are heard, laws are changing all the time. That's probably one of most stressful things about the job, but that's also one of the best things about the job.
BK: 'Cause you get to see that change happen in real time.
AL: Yeah, exactly. I get to see that change happen in real time, and knowing where we've come to where we are now.
BK: Awesome. Well, that was perfect.
BK: This has been an excellent talk. Thank you, Andrew, so much for joining me here today. This is where you say, "Thank you for having... "
AL: Oh, thanks for having me.
[chuckle]
BK: Awesome. [laughter] Awesome. Great.
AL: I have no social etiquette.
[laughter]
BK: Yeah. There's not... For podcasts, there's really not.