Disability Awareness and the Planning Needs for Older Adults

Welcome to the Living to 100 Club Podcast. Here's our host, Dr. Joseph Casciani.

Greetings to everyone joining us today for the Living to 100 Club Program. I'm your host, Joe Casciani. Each week, we bring you thought-provoking discussions on topics related to living longer and celebrating aging. Here at the club, we're building a community of everyone who embraces the reality that we are now living longer than any generation in history. Club members want to establish new habits, learn new information, and make decisions that impact our mental and physical health, and most importantly, how How do we make it over those hurdles and obstacles and keep moving forward? Today we're speaking with someone who knows all about making it over obstacles. In fact, you might say that Judy Heumann wrote the book on making it over obstacles. Judy Heumann is a lifelong advocate for the rights of disabled people. She has traveled in her motorized wheelchair to countries on every continent, She's played a role in major legislation here in the U.S., including the Americans with Disabilities Act, and she was on the COVID of Time magazine a few years ago. I'm honored to have known our guest back in college in the late '60s while attending Long Island University in Brooklyn. She's an old friend. First, a little background. Judy is an internationally recognized disability advocate. She served in the Clinton and Obama administrations and was a senior fellow at the Ford Foundation. Judy's story was also featured in the documentary Crip Camp: A Disability Revolution, a 2020 American Award-winning documentary film produced by the Obama Higher Ground production. She recently released her memoir Being Human: An Unrepentant Memoir of a Disability Rights Advocate. Written with Kristin Joyner. Judy is now the producer of The Human Perspective, a podcast and YouTube channel that aims to share the beauty of the disability community. Judy, welcome to our podcast.

Nice to be with you, Joe.

Great, glad to have you.

I just want to say for the audience, Joe and I know each other. We haven't seen each other in decades, but we both went to Long Island University in Brooklyn, and we were just reminiscing about old friends. And I think, you know, one of the important aspects of getting older and meeting people that you haven't seen in a long time is really being able to reminisce about periods in our lives that other people won't remember. So it was great traveling a little bit down memory lane with Joe before we start this.

Yes, I agree, Judy. It's so good to reconnect and re-engage with people, uh, no matter how long we've been separated. It's always good to reconnect. Yeah, I'm looking forward to our conversation today.

Me too.

Yeah, so you contracted polio as a child. I read the story where you were denied the right to attend school because you were considered a fire hazard. A fire hazard. I didn't know humans could be considered fire hazards. This set the stage as someone who would fight for rights as a child and then become a lifelong advocate for the rights of disabled people. Was this the catalyst to your advocacy work?

I think, you know, my parents were very influential in as much as they themselves had to become advocates. It wasn't anything that they, you know, had planned. But after I was born and had polio, as you said, you know, when I was 18 months old, and they were doing everything with me that they would eventually do with my other brothers. But the differences were my mother took my brother to school and he got into school. But my mother took me to school and I couldn't go get into the school, even though she was pulling me up the stairs. They wouldn't allow me to go to that school. So it was very clear very early on that if my parents really wanted me to be able to pursue a life like they had envisioned before I had polio, that they were going to have to fight for change because I was too young at that point. And they were really— my mother in particular, because my dad had a small butcher shop and he was working all the time, but he was very supportive of my mother. But she was going to have to learn how to fight against the system. And I think ultimately from her and other mothers who were doing the same thing for their children, my friends and myself began to realize that You know, your parents can be your advocates just for so long, and then you really need to shape it in the vision that you want it to be.

Yeah, so you picked up on some of those same fights and right advocacy that your mother started, and you continued. And I, I don't know how long you've been involved with the different organizations, but I know At one point, you were appointed by President Obama as the first Special Advisor for International Disability Rights and served from 2010 through 2017, among all of your other work and dedication. So can you share what your goals were for this assignment as Special Advisor for International Disability Rights?

So I worked in the State Department. And the creation of the position was the result of work that the disability community had been doing in the U.S. More countries in the U.S. at— sorry, there are many countries around the world at that point who were very engaged in something called the Convention on the Rights of People with Disabilities. The CRPD is a UN treaty that came into force in 2008. Bush II would not support the U.S. ratifying. In the United States, the process for ratification of any treaty is that the Senate needs to recommend by a two-thirds vote that the president signed. And so, that the president ratified. Let me just go back. There is a treaty called the Convention on the Rights of Persons with Disabilities, and it came into effect in 2008. It's the United Nations treaty. And in the United States, in order for us to state that we will implement a treaty, The president has to sign, and then the Senate needs to, by a two-thirds vote, recommend that the treaty be ratified. And so when Obama came in, he signed, and then I was appointed to this position, and my job was to work with people in the State Department and across government agencies and with the Senate Foreign Affairs Committee to basically get the Senate to vote that the president ratify. We worked really hard. So when we look at, you know, what some of my goals were, one of my goals was to get the treaty ratified. And it was a very big effort that went on across agencies that were like the Department of Justice, Health and Human Services, the Department of State were the main agencies, but other agencies were involved. The VA was involved and others. And ultimately, we were not able to get sufficient number of Republicans. We got 100% of the Democrats. It got voted out of committee twice. The first vote on the floor, we got 61 votes, but we needed 67. And second round, when we also got through committee, we decided that we didn't want to bring it to the floor because we didn't want it to be voted down a second time.

Sure.

So I think, you know, it was It's very unfortunate that the U.S. has not ratified this treaty, and it really is relevant both for younger and older disabled people. It's modeled on the Americans with Disabilities Act and requires that countries implement like 42 articles which deal on housing, transportation, employment, education, many other areas. And governments have to develop their laws, pass their laws, and work on implementation. So I would say that was one goal partially realized. And then the other objectives that I and my team and the department itself had was to really look at socializing disability across the agency so that people in the State Department would understand what are the kinds of human rights violations that disabled people experience, as example. Because the State Department every year writes reports, human rights reports, on every country. And so they weren't looking at disability the way that it needed to be. So one of the efforts that we undertook while we were there, and still is going on, was that you needed to look at each country and look at violations that were occurring as well as, you know, positive things that were happening.

Sure. So are they— were they participating, in other words, to everything they agreed to? Similar to the Paris Accord and now the global climate.

Well, I mean, a little different because since we hadn't ratified, we couldn't be holding anybody to something that we hadn't ratified. So really it was more looking at critical issues like what was going on in the area of education for disabled children, employment or healthcare or human rights violations. Trafficking of disabled people or trafficking of women who then became disabled. Many issues like that. And then another critical part of what we were doing is just really getting issues around disability integrated into major work that the department was doing. Because what we were saying is disability is a part of everything that the agency is doing and We were looking at opportunities all the time to get the issue of disability integrated into whatever work was going on of importance.

Sure. And you were also involved with the ADA, Americans with Disabilities Act. Was this during the Obama years or Clinton?

Well, the ADA was signed into law by Bush I, and then I was in the Clinton administration from 1993 to 2001, and part of my job dealt with ADA, but significantly it dealt with other laws that were under our jurisdiction. So the Individuals with Disabilities Education Act, the Rehabilitation Services Act, and legislation on something called NIDRR. Now ADA would be dealt with by the Department of Justice or the Office of Civil Rights in the Department of Education. So we were involved, but we didn't have jurisdiction over the ADA complaints.

Okay, okay. But you've been immersed in these issues.

Yeah, I mean, I've been immersed in issues around disability my whole life. And, you know, really it started out with my experiences and experiences of my friends and how we began to really look at what we needed to do to make a difference. Have you seen the film Crip Camp?

No, no, I've not.

So I would encourage any of your audience that's interested in learning about the history of the disability rights movement, it's called Crip Camp, C-R-I-P C-A-M-P. And, um, it's a documentary, uh, that starts off in 1971 in Hunter, New York at a camp called Camp Jened. And it goes pretty much through 2017-18. And it was an Academy-nominated, uh, film this year.

Yeah.

And, um, it lost out to, um The Octopus Teacher. But it's, it's been a very, very highly watched film around the world because it's in 29 languages. And I think it's really a good historical lesson on activities that have gone on over the last number of decades in the U.S. It's mainly focused on the U.S. It's not really focused internationally.

Yeah, but it's a good documentary about all of the fights and struggles and successes, I take it.

Yes.

It's available on Amazon, you know?

It's available on Netflix and YouTube.

Netflix and YouTube. Okay, I'll be sure to put that in our program notes. So I'm curious— kudos to you, by the way, um, obviously gold stars for all the hard work you've done and everything that you've accomplished. Let me ask you, as, as your work with disability rights affects older adults. You know, my podcast, my Living to 100 Club, really focuses on aging and successful aging. So how do you, how do you think the specific challenges faced by disabled older adults kind of play out as people get older? I mean, there are more challenges with older adults as they're disabled, how do those issues, how do they appear different than they do for younger adults or middle-aged adults?

It's a really interesting question and there isn't a simple answer. So one thing I would say is that people who acquire their disabilities when they're older are living in a society where disability has not been really seen in a positive way. Disability is still very much seen as something which is a tragedy and stigmatizing, embarrassing, and our public policies are not really in place in a way that allow people to easily live in the community. So you see that, I think, 183,000 people who died from COVID were in nursing homes, huge numbers of people, and restricted living environments. Now that's there because people couldn't age in place for whatever reason, and because a supply of people who could do personal assistance to help people live in their own homes and be active in the communities, even pre-COVID, was not being effectively addressed. And now post-COVID, or, but now, you know, during COVID the problem is getting, you know, more significant. People are needing higher wages and better benefits and on and on. So I would say one issue where we really need to be doing more work is preparing for becoming older and looking at both if you're not going to be able to walk the same way, hear the same way, see the same way, you may have memory issues, and looking at ways that you can prepare for that, including living in your community. And I think it's very important to be working with organizations in communities that are also run by younger people, like Centers for Independent Living. There's a Center for Independent Living in San Diego that has been around in California since the 1970s. They do work not just with people who are younger, but with people who are older. I do believe that We've seen many advantages, I mean, changes happening in the area of technology. As someone who had my disability when I was 18 months old, and now I'm going to be 74, I have for a long time actually looked at issues around aging and disability. I started when I was in graduate school in public health. Realizing that programs that were being set up for older people who had disabilities were in many ways programs that we in the younger disabled community did not support. That we were not looking for congregate living, but more for people being able to live at home and helping people be able to get the support that they needed to continue to live the life that they had led when they were younger, but there were many barriers for that happening. I think, you know, there is a stronger movement of older people today that are looking at these issues, but still not enough collaborative work is going on between the disability and non-disability community, including older people. And there's a lot of benefit of our working together. And now that I'm older, my working with younger people and older people. Yes, I think that's true. One very important aspect of what needs to be happening is, you know, greater socializing of disability, not only as a normal part of life,, but there may well be changes that go on in your life in order to be able to continue to live a life reasonable to what you were living earlier.

So let me ask then, what you're suggesting that for people who are not set up, maybe they have the acquired disabilities and their environment is not set up to help them remain in their homes, And the aging in place movement, the aging in place efforts are not prevalent enough because too many people end up in long-term care facilities because their own homes are not adequate to, to live independently or with assistance.

But likely they could have been if it was something that people thought about when they were buying something, moving in when they were younger. Or looked at if they were moving from a house to something smaller, looking at a place that was accessible and beginning to look at how much money did people need to save in order to be able to get personal assistance, being more involved legislatively to get money put aside for what we call home and community-based services. One of the Build Back Better provisions is in the area of home and community-based services. Now, the home and community-based services money under the Build Back Better will only be for Medicaid-eligible people, but in part that's because I think we really need a full-court press to allow legislators to understand and for us to be fighting for anything from, you know, we used to be able to deduct up to 10% of medical expenses, but that had been reduced. So as well as I think being able to get money for personal assistance, that shouldn't be, the means testing should be less. Restrictive. Because if one winds up leaving their home and moving into a more restricted community, it's, it's not good for the community. It's certainly not good for the individual people. So I think we really need to be looking more at how we can be working together as younger and older people with disabilities and how we can really be arguing both at the state levels and at federal levels for more effective services.

In terms of relocating, downsizing, I've talked with a number of people who specialize in helping older adults relocate to new settings and to look at new homes, new apartments that are more suitable. So I can see where you can offer a lot of really good information or recommendations to people in these situations. What do you recommend to somebody to better prepare for maybe some physical decline, maybe sudden or maybe gradual decline, weakness, you know, dependence on other, other supports? What what advance recommendations would you make?

I mean, I think it's a matter— it's not simple. Let me start out by that. We're very busy when we're younger. We don't think about becoming older. But I think we need to, just like we look at how we invest money, if we have money to invest, we need to really look at what possibilities exist for for our future. And I would say that you wanna start even before you buy your first home. You wanna start thinking about, well, what if my mother or my father or my grandmother or grandfather, one of my friends or my kids' friends wanted to come visit and we have steps? Can we get a place that doesn't have steps or can we get a place that we can ramp? But really start thinking about these issues. Is there a bathroom on the first floor? Is it wide enough that somebody in a wheelchair can get into it? All these kinds of things that we have to look at all the time. If you break your leg and you don't have a disability, but now you break your leg, getting in and out places with all these steps, it's likely that you're not going to be going in and out anywhere like you would have done previously. So look to groups like Centers for Independent Living in your communities. Talk with them, meet with them. I would say, you know, talk to AARP, depending on which AARP, they may have more or less information. But you need to have a vision also that if you're losing hearing, if you're losing vision, that doesn't mean that you no longer can do things. It means you may need assistance. It also means that you need to know more about the technology that's out there. Like, a lot of people have no idea that there is a National Library Service that allows you, if you are blind, low vision, or have a physical disability, to be able to get books. For free. You have to download a certain piece of software so that if you're a reader and you can no longer read with your eyes, that doesn't mean that you have to give up reading. You can get talking books, and even using talking books is something that people frequently have to learn how to do because you're listening to different voices, whether they're being read by individuals like in audiobooks or it's synthetic speech. But reading doesn't have to be something that you no longer do. Going to the movies doesn't have to be something you no longer can do because now, you know, the movie theaters have technology so that you can both get a device that you put by your seat which allows audio description and captioning is something which is becoming much more common even in films. And certainly anything on TV is supposed to be captioned. So, and simple devices that you may need in your home. And there are like Lighthouses for the Blind, you know, go to a Lighthouse for the Blind, learn about them, look at what they do. They can really help you be thinking about things that might happen in the future.. And even if it doesn't, it's helpful for you to know about what could be happening to you or a friend so that you can also be a resource. There are more and more, you know, local organizations that are being set up, villages where people are volunteering their time to help people be able to do things, you know, like drive them someplace, whatever. And they're very valuable for certain populations of people. But I also think it's— when you should see Crip Camp, because I think one of the values of Crip Camp is not that it's focusing on aging, because it's not, but it's focusing on empowerment. And I think, you know, the aging movement is very much all about empowerment. Just because we're older doesn't mean X, but it should also mean just because we're becoming older, it doesn't mean that if we have a disability, then it's okay for us to go to X. You know, I think we need to really, even with our close friends and family, have discussions which can allow, you know, people to do some planning for what could happen and look at it as something which is positive. Understand about what people want and don't want. And, you know, if you meet more older people with disabilities, not— I mean, certainly many older people really don't acquire many disabilities and can do and drive and do all kinds of things by themselves till they're quite old. But even for those individuals who are getting older, sometimes they're also going to need other types of supports. I think really the issue around aging and disability is very much looking at what we believe disability is. And because so many people still, as I said earlier, believe that disability is a tragedy and that people are threatened by the thought of becoming disabled, that instead of engaging and stepping in and really looking at what we need to do and learning from, you know, thousands, hundreds of thousands of us around the country and being able to be more prepared. I think we see ourselves too frequently as being isolated, and then we become isolated. And the healthcare community itself, in my mind, is still not doing what it needs to do to really help make referrals so that people can go to different places to get, you know, appropriate testing for your hearing, for your vision, to learn about the technology that's out there. So if certain things happen, you have a better understanding and aren't first work walking into the world, or not walking into this, but really kind of feeling overwhelmed, which, believe me, we have such a disjointed healthcare system, feeling overwhelmed without any additional needs is very easy to do.

You're talking about planning, you're talking about a possibility down the road, and as you say, when we're looking for a place to live, and even as a middle-aged adult, we should always be aware of possible needs to add a ramp, to add grab bars, to have wider doorways and all that. And that's something, that's something that's hard for people to do. I mean, planning and prevention, even in, you know, healthcare is difficult. We always wait till we get the high, you know, lab tests or, you know, the risk of diabetes is there or whatever. We don't get enough emphasis on taking early steps, right? And that's what you're saying. We need to be more aware of it. Because there are resources available. We need to learn about them before the sudden acute onset.

And support them in many cases. So I think you and I, Joe, are old enough to remember that there was a time when you would never see a diaper being advertised on TV, nor would you have ever thought they would advertise an adult diaper on TV. If you go back and look at the AARP magazines, They never had anything like that in their magazines. Now, you know, their magazines are advertising scooters and canes and diapers. And I was talking one day to one of the distributors of diapers because when I travel, the airplanes aren't accessible. And so I have to wear diapers. And I was like, why are there so many diapers being sold? And one of the reasons people have diabetes and they lose continence. So something that 20 years ago, 30 years ago, one never would have seen. Now they're advertising pretty diapers. You can do sports, you can do all kinds of things with these diapers. So that's a way of normalizing something. That previously was only for babies.

Yeah.

And it's a big deal, issue actually, that this has happened. And scooters, they don't talk that much about ramps or the insides of houses, but they do talk about scooters and canes. They don't really talk much in advertising about talking equipment. For people who are losing vision. None of that really happens too much, nor is there really the kind of training that I think people need to know about their computers because the software systems— Microsoft, Microsoft, um, do not ask me to teach you about it, but Microsoft has accessibility built into the computer. Into their software, just like the iPhone does. You know, Siri was originally designed— before it was Siri— through the Department of Education, I think, the VA. It was originally for people who had disabilities, and now its use is so, you know, very much a part of healthcare and our day-to-day lives. But, and we don't think anything about it, right? We've got Alexa, we've got all these things now that were really designed not for the average person. And, you know, also I was, I was on, uh, doing another call earlier today, and one of the women on the call said, you know, I had a baby carriage with 2 babies in it, and I was ever so thankful for the work that the disability community had done to make transportation accessible. Nobody knows that the reason why buses are accessible and trains are accessible is because of work of disabled people who wanted to be able to participate, you know, in life. And there was so much opposition to it, and now it's something that everybody expects. You know, the big bathroom in the women's and men's public bathrooms. There would be no big bathroom if it weren't for the disability community. And yet the big bathrooms, you know, go into a bathroom, there can be 6 stalls, and there could be 2 people, and 4 of the stalls will not be used and the wheelchair accessible stall will be being used. Once I was almost late for an airplane because of what— there was one accessible stall and there was a woman in there changing her dog. So, but you know, things that people didn't understand or didn't support that really, you know, were advocated for like Section 504, like the Americans with Disabilities Act. I really think normalizing this issue, getting much more discussions, getting people in universities who are really looking at this issue from a rights-based approach is really what has to happen.

Yeah, yeah. A lot has happened, as you say. Even the perceptions of, you know, dependence and frailty and weakness, and there's something wrong with the person who may be handicapped or, you know, maybe reliant on a wheelchair. That whole process where we're able to see people that we're all alike, we may have different body function, but we're really all alike. Kind of like the— if you watch the Olympics last summer, we were looking at Right after the Olympics were the Paralympics. And they had a lot of ads for the handicapped swimmer. And I thought, well, what a great ad that is because it shows that we're all capable of functioning at some level and we don't have to look normal. We don't have to look perfect. We don't have to look the way— Atypical. Yeah, atypical, that's better. So that's really good. And as you say, we're normalizing a lot of these. There's so many questions I'd like to ask you. Judy, I just want to mention your new book, Being Human: An Unrepentant Memoir of a Disability Rights Activist. How can people get the book? Is it available on your website, on Amazon?

It's available on Amazon. But if you live in San Diego, the book was chosen as the Book of the Year for San Diego. It's called One Book San Diego. Yeah, One Book San Diego. So in San Diego, you can just get it at the library or at bookstores. You can get it on Amazon. And I have another book out which is called Rolling Warrior, and Rolling Warrior is for a group younger, so it's like 10 years old and up. And so if you have grandkids or kids that are, you know, like 9, 10, 11, 12, 13, and then after Strongest Readers, they may want to read Rolling Warrior. And both Rolling Warrior and Being Human are on their audio, audiobooks read by a woman named Ali Stroker.

Just quickly, one thing you'd like our listeners to take away from our conversation?

Don't be afraid of disability. Talk to people. Look for organizations in your community where you can be learning more about what to do and look around more about friends that you may have already have disabilities. And I want to make sure that we're thinking about people also may have depression or anxiety or bipolar or lupus or cancer. You know, disability is not just something which is visible. And it is something that We do need to think, I think, in a most personal way, where do our biases come from? What do we need to do to try to change the way we view disabled people in general? Because in my view, if you look at disabled people as being less than and you acquire a disability, then you really also are dealing with not only having to make changes in your own life, but you do have in the back of your head that you are less than or that other people are treating you as less than. And so at the end of the day, we really want to be able to treat all people with respect and recognizing that we do things different ways. And also, I think it's really important that, you know, we do— we need to be a community because There are things that not just disability-related, but things that people need from each other. And I think COVID really in many ways is natural supports. I think that existed in the past have also changed. And so I think we really need to be looking at where is it that we need to be going in the future to ensure that we can be supportive of ourselves, of our friends and family, and of our futures.

Yeah, yeah, that's so important because we are all the same. We all have the same value and worth regardless of our level of functioning. Judy, it looks like we're out of time for today. I just want to wrap up with a few items for our listeners. I want to announce a co-sponsor for our podcast, A Mighty Good Time. Are you looking for ways to engage and stay active? Check out amightygoodtime.com. It's a one-stop shop for events and activities for those 50 and over, free to search and it's free to post. Amightygoodtime.com. And there's a new offering on our website where individuals can arrange one-on-one coaching calls with Dr. Joe— that's me— to discuss bouncing back from setbacks. How can we tap into our resilient self? How can we find ways to make it over those obstacles we face on our different journeys. Take a look at the work with Dr. Joe Tab on our website, livingto100.club. Also, be sure to subscribe to our email list to receive our newsletter and other announcements. Finally, pick up a copy of my book on Amazon, Living Longer Is the New Normal. I think that whatever age we're at, inspiration and positive mindset can be put to good use. That's my message in the book. We've been talking today with Judy Heumann. Judy, thanks so much for being a guest on our show today. For those who might want to contact you, how can they do that?

Go to my website, judithhuman.com.

Yes. Thank you.

Thank you, guys.

Thanks to all of our listeners for tuning in. Hope to see you next time.

Bye, Joe.

Hey everybody, Jared Sebaste here, host of Retire Repurposed. This podcast is dedicated to help people transition into fulfilling and purposeful retirements. Retirement is a big life change. In fact, the two most dangerous years of a person's life are the year they were born and the year they retire. Few people could just flip the switch from working a career 30 or 40+ years, retiring on Friday without methodical steps to living what we call a repurposed retirement. To listen now, search Retire Repurpose on your favorite podcast platform, Senior Resource, or Life Audio.