Title:
Rare Disability, Powerful Sisterhood | Karen Tamley

Subtitle:
Access Living CEO Karen Tamley joins Alycia to explore sacral agenesis, disability pride, aging, advocacy, leadership, and the fight to protect community living.

Transcript:

Alycia Anderson: Welcome to Pushing Forward with Alycia, a podcast that gives disability a voice. Each week, we will explore topics like confidence, ambition, resilience, and finding success against all odds. We are creating a collective community that believes that all things are possible for all people. Open hearts, clear paths, let’s go.

Welcome back to Pushing Forward with Alycia. I’m Alycia, and I have a question.

What happens when two women with the same rare disability find each other online, immediately start comparing notes, and discover things like, “Wait, your body does that? Mine does, too.”

Today’s guest is Karen Tamley, president and CEO of Access Living in Chicago, one of my favorite cities of all time, one of the nation’s leading disability advocacy organizations, and a nationally recognized leader in disability rights, accessibility, independent living, and inclusion.

Karen has spent her career breaking barriers and creating change. She served as the commissioner of the Mayor’s Office for People with Disabilities in Chicago, and was appointed by President Obama to the US Access Board, where she later served as chair big time. But this conversation is personal, too.

It’s not all about work, though we’re gonna talk about some big stuff. Karen and I both have sacral agenesis, a rare congenital disability, and we connected on this, and it’s rare day that I meet anybody with my same disability. So we are also in a similar season of life. So we not only connected on our advocacy, our bodies, our disability, but we’re also in the same age demographic.

We had all this connection about aging with disability, and also today, we are in the middle of Disability Pride Month, where disability rights and community and healthcare and aging and disability and accessibility, all those things are absolutely top of mind. So this conversation is so timely, and I really want it to be a candid conversation about all of those things, disability, aging, healthcare, leadership, advocacy. I don’t know if we have time for all of that, but we’re gonna do our best. Karen, welcome to the show. We finally did it.

Karen Tamley: Yay. Thank you for having me. I’m so excited.

Alycia Anderson: You’ve been like a soul sister since I met you. I’m so happy that our paths have crossed, and I think you and I having just the resource and the time in life right now to bounce things off of each other has been really meaningful for me. And so I’m so happy to have you on the show and talk about our disabilities and our sisterhood and our friendship and advocacy and all the things.

Karen Tamley: Yeah.

Alycia Anderson: Before we talk about your incredible career, all the advocacy that you’re doing right now, there’s lots of stuff going on with disability rights, DOJ decisions, all kinds of things in the news I wanna talk about. But let’s get a little personal first, if that’s okay. We met on LinkedIn. I can’t remember, and you probably do, if it was your husband that introduced us, or it was like all the same timing or something came together.

Karen Tamley: Yeah. You were a keynote speaker at the Disability Lead Summit, and I am on the board and was a co-founder of Disability Lead. And my husband was the one that was like, ” Hey Karen, she has your disability. You guys have to connect.” And so that was the start of it.

Alycia Anderson: Yeah, and he sent me an email. He’s like, “Hey, you have SA, so does my wife.” And I’m like, “What?” And we, you reached out the same time, we connected, and we’ve been really besties ever since. I feel so connected to you. It’s so beautiful. We’re just like, we have a sisterhood.

Since we both have the same disability that we rarely get to talk about in a way that, someone else might really understand and we’re in a similar season of life, what has this connection been like for you, and how often do you meet other people with our lived experience and what does that connection mean to you?

Karen Tamley: Yeah I was born with sacral agenesis as you were. And, I was born in the late 1960s where, disability was not on the radar like it is now. There were very little expectations of people with disabilities, few opportunities. It was decades before the ADA passed. The doctors told my parents that I’m never gonna sit up and I’m never gonna leave home, right?

And so that’s kind of the framing. And I didn’t end up meeting anyone with our very rare disability until my 20s. And, my friend Julie was the first one I met, and over the years… And I think it was harder to meet people too because growing up we didn’t have the internet, we didn’t have social media, we didn’t have access to just, the really, the vast array of people or, meet-up groups on social media or things like that.

And so it was much harder to meet anyone with your disability. The first person I met happened to be someone that I worked with. And so that was super cool. But I think meeting you and others in between has been incredibly just so comforting, reassuring, knowing that there’s someone going through life with your same disability in a way that often doctors don’t understand, but we understand each other in a lot of ways. And so for me it’s been like this kind of security blanket, safety net, and extremely fun and enjoyable.

Alycia Anderson: Yeah, and like also someone to compare notes with. I know with our disabilities, I feel like from a disability cultural standpoint, I have always felt left out of the spinal cord injury conversations or the, conversations of disability groups that are more, I’m air quoting, common where there’s commonalities, but there’s also a lot of differences still.

And so to be able to sit with you and go like, “Oh, wow, my feet are like that too,” or, “Oh, my knees do that too,” or, “My kidney does that too,” is just been, for us to be able to compare notes has been incredible. And when you say things like, “They told my parents I was gonna sit up,” that’s what they told my parents too.

They told my parents, “She’s not… she’s to be institutionalized,” is what they told my par- they told my parents, “No quality of life,” things like that. And so we, our parents heard the same things, and we have navigated a lot. So it’s just been so cool for us to, for me to have you, especially in our age group and demographic, honestly.

Like it’s really awesome.

Karen Tamley: Yeah, 100%. And I think that’s honestly speaks to why the independent living movement and Centers for Independent Living have peer support as a core service, right? Because there’s an inherent value in people with disabilities connecting up with like individuals, with disabilities and being able to share those lived experiences and provide tips on how to navigate the world or the healthcare system.

And so it’s been long recognized since the ’70s, since Centers for Independent Living started, about this importance of one-on-one and group connection with people that navigate through life, in the ways that we do.

Alycia Anderson: Yeah. It’s so empowering. It’s amazing. Talk about, a little bit about what sacral agenesis is in your words.

Karen Tamley: At least for me, so I’m missing some of the lower, five lower vertebraes of my spine, so you’re never completely upright. You’re compressed. My legs are definitely shorter than average. I’ve no muscles from the waist down. My upper body is more strong and then there’s just other issues with kidneys and neurological issues, but for the most part for my age and my disability combined, I think I’m doing pretty good.

And I’ve used a wheelchair for a large part of my life. I started out using crutches, and they made specialized, kinda leg braces for me with the idea that I was walking. Later I was built a contraption by an orthopedic doctor. That was like this tricycle with a chest strap that I was strapped into that I propelled with crutches.

I’ll have to send you photos of that. But it probably wasn’t until I was in third grade, second, third grade, that I got my first wheelchair, and have used a wheelchair now, manual wheelchair, all of my life.

Alycia Anderson: Wow. So before that you were ambulatory with mobility devices?

Karen Tamley: Yes.

Alycia Anderson: That’s a difference between you and I. That’s incredible.

Karen Tamley: Yeah. But again, it was like the s- the early ’70s, and, there were no sports chairs. There were no specialized wheelchairs. It was like the old Irving and Jennings building. I don’t even know if I have that name right. The ENG Ironside wheelchairs, right? There’s little me in this big old wheelchair with the, the handlebars above my head, sinking into it, no specialized seating at the time.

And I didn’t even get my first, quote unquote, “sports chair” until probably early college, and it was a Quickie. It was a aluminum Quickie, right? And so that’s when things were really starting to change, in the mid-1980s, at least for me. But up until then there wasn’t great mobility devices for people who needed wheelchairs.

Alycia Anderson: Yeah. I love that. I think it was… Everest & Jennings wheelchair?

Karen Tamley: Everest & Jennings.

Alycia Anderson: Yeah, and I had one of those too. I think that was one of the first wheelchair manufacturers. My first sports chair was when I was four, and it was, in ’79, ’80, something like that.

And I started playing wheelchair tennis with the founder of wheelchair tennis, Brad Parks, and they developed the first junior sports chair for me to play with them, and that was, like, very innovative back then. And before that I was the same thing, like very clunky wheelchairs and equipment. And that’s what’s cool about our lived experience is being that kind of first generation access kid from, when legislation was being implemented and mandated, and we got to explore all of that advocacy as that first generation of children that’s like, “Oh no, this is the law now.”

From at least the Rehabilitation Act where we were navigating environments that mandated, and there was obviously still a ton of advocacy that had to happen there and a lot of no’s, but we were in a very interesting generational.

Karen Tamley: Yes.

Alycia Anderson: Of being able to explore those things from like a historical standpoint of growing up.

So I love it that we have that in common too.

Karen Tamley: Yeah, no, and I think that’s a really cool thing was to have seen life like before we had any rights, right? Before the ADA, before we had lifts on buses, before we had curb ramps before we had sports chairs, before we had anything, to fast-forward to see where we are now, 40, 50 years later, and, you can buy a handcycle online, right?

You can buy a sports chair online or all your accessories, the rights, that are now out there protecting disabled folks, compared to where we were growing up where there was nothing. It’s been really amazing just to see that, how our movement has just changed over the decades, and that we’ve lived through that.

Alycia Anderson: What’s one of the things you remember as a kid when no was okay that you were denied?

Karen Tamley: Something that I was denied as a kid

Alycia Anderson: Yeah, I know for me, I went to a two-story high school, and the teacher wouldn’t move downstairs, and I was denied access to class and sat in a library by myself for a semester. Do you remember any of those stories that… I think those stories really paint a picture of remembering, keeping at the forefront how important this legislation is to protect especially right now with everything that’s going on politically.

Can you remember something that was very blatant?

Karen Tamley: I definitely remember in high school not having lifts on buses and all my friends getting on the city bus and going shopping or going to ice cream or whatever, and I couldn’t join them because the buses weren’t accessible. I remember my first job out of high school, believe it or not I took this job as a front desk assistant of a nonprofit, and it was in an old house.

It had four stairs to get up. My mom carried me up every morning up those stairs to work. I would never do that now. Never. Again, that was before the ADA, before we had kind of a mindset of expecting and demanding and, it was the only job offer I had that summer. It was a fabulous experience, but like I would never do anything like that now, so that just shows the evolution of just the mindset, the world, how we think about what we expect as disabled people now as compared to then. And I remember being carried into restaurants by my parents, getting out of my wheelchair to crawl on the floor to use a restaurant bathroom because none of them had stalls, right?

And I would carry flip-flops in my bag to put on my hands to jump out of my chair and hop up on the toilet and then hop back on the floor, get it back in my wheelchair, and that was just like accepted, like the way you navigated the world. Like again, something I would never do anymore, right?

‘Cause I don’t have to do it and I’m not going to do it. But as growing up as a kid, that’s the way life was and because there were no laws that said these places had to be accessible.

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Alycia Anderson: You just gave me a flash. I used to do the same thing with shoes on my hand. I haven’t thought about that for years. And that paints a perfect picture. Like, how many people in life would put shoes on their hands to crawl on a public bathroom floor to go to the bathroom? It’s absolutely ridiculous. I’ve crawled into airline bathrooms on the plane a couple times. There was, like, no access. The aisle chair was broke. And horribly not only humiliating but disgusting experiences. So that’s… You just gave me another flash. This is why I love us. I’m like, “Oh my God, I did that too.” So let’s talk about your advocacy a little bit and your work ’cause we keep going there, and I think we need to be there right now.

Let’s jump into where we’re at right now, and then I wanna talk about what you’re doing with your an incredible career. Okay, so yesterday, right before this interview I see on your LinkedIn that you were on with WTTW Chicago PBS, talking about the new Department of Justice memo and what it can mean for people with disabilities’ rights to live in their own homes, in our own communities, and outside of institutional scenarios. We’re in a really scary time right now that these conversations are even happening.

It feels like the uneducated and the ignorance that is happening right now is beyond comprehension. Let’s talk about this advocacy a little bit. First of all, thank you for the work that you’re doing and speaking out the way that you are. But talk about the interview, what you talked about the DOJ memo, the whole thing.

Give us a little… For anybody out there that has no idea.

Karen Tamley: Sure. I think this is reflective of just a series of attacks that the disability community and many other marginalized communities are facing right now. And what this memo does, I’ll back up and say in 1999, there was a very landmark Supreme Court decision called Olmstead that basically said that institutionalization and segregation is a form of discrimination under the Americans with Disabilities Act.

And it really pushed forward this notion of an integration mandate that people with disabilities have the right to live in community in the least restrictive environments, that’s best meet their needs, right? And so the Supreme Court was decided on the behalf of two women that were institutionalized in Georgia.

And ever since 1999, this landmark Supreme Court decision has been, the law of the land, right? It’s been precedent. It has been the disability community’s Brown versus Board of Education. It’s that important to us. And, it’s the foundation for many legal cases against states to say you have to invest more in community-based services, that would allow people to live free of institutions including in my own state.

We have a program at Access Living that we help people with disabilities move out of nursing homes. We move about 100 people out every year, but there’s a whole network of organizations in Illinois that have moved thousands of disabled people out of nursing homes and institutions over the last, decade.

And so this memo that was just released by the Department of Justice basically saying that, Section 504 of the Rehabilitation Act and the ADA don’t really apply anymore and really don’t need to be enforced by the states. And again, it’s a memo. The law has not changed. The court decision still stands, but the memo was definitely a blow to the disability community.

And that the federal government, who has had our backs has now come out and basically said that this doesn’t apply and it has weakened, in many ways, the power of this Olmstead Supreme Court decision. We’re seeing examples where states are starting to use this memo in their own legal defenses during currentlitigation, and referencing this memo to bolster their arguments that, “Hey, we don’t have to create community-based options.”

And in this country, we have a very disproportionate funding stream that is heavily weighted towards institutionalization of people with disabilities against home care, which is exponentially cheaper. It’s more humane. It’s what disabled people want. We all wanna live in our own homes and communities, and the vast majority of disabled people can do that if they get the right supports and access to housing. And so we’re concerned that this memo can not only be used as defenses or excuses, it can change public opinion. It can show up in policy decisions or funding streams. And, I think a lot of it is also rooted in things that we’ve seen in the news about wanting to take unhoused people with mental or behavioral health issues off of the streets, putting people back in institutions.

There’s been just increased conversation from the federal government about wanting to reopen institutions and really move backwards, and the disability community is saying, “We will not move back. We will not go back,” “and this is what we want.” And I think what is most dangerous right now is this H.R.1 bill otherwise known as the Big Beautiful Bill, that is literally going to cut, Tens of millions of dollars, billions of dollars over the next decade of Medicaid eligibility for people with disabilities and people who are poor and rely on Medicaid.

Countless people are gonna be cut off of Medicaid rolls. And as, states are grappling with the loss of federal Medicaid dollars, they’re gonna be put in these decisions to make really hard decisions. And this memo is not going to be helpful when states think about home and community-based services being optional under Medicaid and institutionalization being an entitlement, which means they have to fund it.

What are we gonna pick? And now with this memo saying, “Oh, you don’t have to enforce this anymore,” it’s just further eroding and weakening, our efforts and our work to really help keep people in community, move people out of institutions, and give people the life that they want and deserve. So it’s scary.

Alycia Anderson: I was just gonna say, it’s so scary. And going back to you and I living a life where the okay choice was no quality of life, institutionalized, she will not have the quality of life that is gonna be good,

Karen Tamley: Right.

Alycia Anderson: And that’s me, that’s you.

Karen Tamley: Exactly.

Alycia Anderson: That is exactly why this is so dangerous.

Because it’s leadership and political decisions that are being made with so many blanket assumptions and unknowns, and the reality is we’re just scratching the surface of society finally going, “Oh, disabled people can be useful.” So this whole thing is so scary. It is so scary.

Karen Tamley: Yeah, it is, and it’s on top of Medicaid cuts, assistance cuts the dismantling of the Department of Education and Special Education and cuts to federal funding. The list goes on. And so this is just one of many attacks that we are facing right now

Alycia Anderson: Yeah. the advocacy like for people listening right now that wanna be active participants in combating this, like making visible so there’s real education and understanding behind it not just words on some screen that comes up and then we have another news cycle? What is the advocacy, like from the average Joe at home that goes, “Oh, whoa.

Wow. I need to learn more,” and help get involved.

Karen Tamley: Yeah. I think first is just educate yourself on what’s going on and what the implications are. There is misinformation out there obviously, so I think it’s really important to go to trusted sources, disability orgs that have really good solid information about what all these cuts and attacks really mean.

I think people speaking out is so important, whether it’s on social media, whether it’s meeting with your elected official I think is absolutely critical. They need to hear from us. Even if you live in a, Democratic city or state and that’s your elected official and even though they’re not in power, they still need to be met with, and you need to make your voice heard on this stuff because it’s important.

I think mobilizing people with lived experience, particularly who are gonna be most impacted, is really important for people who will be impacted, like storytelling, telling your story, how this affects me is super important. I think finding, who is your local center for independent living in your community.

There’s over 400 all, all across the country, and you can find your local center on the National Council on Independent Living website. See what they’re up to, are people doing, letter-writing campaigns? Are they doing rallies on this? How are they bringing attention? Are they posting about this that you could repost, what are the ways that you can make your voice heard in opposition to these cuts? So I think that there’s many ways, and I do think we’re, we are making a difference. In many of these instances, there’s public comment that comes out from the federal government. And so I think making sure that you’re making public comment in writing about some of these proposed rules that could impact our community is super important because we have seen some success on that front.

There was one proposed rule that would make some of the sections of Section 504, unenforceable around physical accessibility, and the disability community rallied and the federal government got 20,000, public comments in opposition. Those things make a difference. So it up.

Alycia Anderson: Yeah, we need to hear that just in society. I think easy to go, “Oh, they won’t get my letter,” or, “They’re not gonna hear my voice,” all the things. And so you to say that in the position that you’re in, I think, is really important for our community to hear.

Karen Tamley: Very much. Don’t stay silent. Speak up, be out there. Educate yourself and your community and your networks, your family, everyone. It’s not just disabled people that need to know about this. Non-disabled people need to be in the fight with us.

Alycia Anderson: Yeah. Okay, so let’s talk about being a boss, ’cause you’re a boss. You have a very impressive career. Like, when you retire, you are gonna be able to rest easy knowing that you’ve done such incredible work. You’re the CEO of Access Living, like that, in Chicago. That is huge. That’s boss babe moves right there, number one.

Will you talk a little bit about your career? How you climbed the ladder? How you got to where you are and what you’re really working on right now?

Karen Tamley: Yeah. I think first of all, I always say it’s because of my parents and how they raised me. And I think I heard this in one of your talks too. I have a non-disabled sister, and they treated me the same as her, with the same level of expectation. And my mom used to have this phrase “We’re gonna throw her in the deep end of the pool.”

And which meant we’re gonna throw you in, there’s no shallow end here, and you’re gonna swim and figure it out. And I think a lot of it was because my parents allowed me to take a risk and take risks. And I think that’s sort of the nature of the era that we grew up in, that was more of the thing that parents did, just come back at dinner time kind of thing.

But my parents were like … And there was no tracking our kids like now.

Alycia Anderson: They’re like, “Actually, do not come back until the sun is all the way down.

Karen Tamley: Exactly.

Alycia Anderson: And don’t call on the payphone.”

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Karen Tamley: That’s right. Exactly. But like to be a kid with a disability and not be coddled or not be overprotected, which I think a lot of parents of kids with disabilities did and still do, like that was a privilege. It really was. And I think that was like a grounding to get me to where I was.

Like being able to take risks and say yes to things out of your comfort zone and just push yourself. So that was first. I think second was having like really great mentors throughout my career. And I never really had a script for what I wanted to do. I’m just like, “Let’s try this thing. I may not like it.

Let’s do an internship, a volunteer,” opportunity through college, in my young adult years. It helped me figure out like what I wanna do and not do. And but I worked for some really amazing people and some really amazing leaders. For any of your fans out there, will know maybe the names of Judy Heumann or Wade Blank or Ed Roberts Tim Cook Marca Bristo.

Like I was able to connect personally with all of those people, right? While they were living. And so I just was exposed to a lot of really amazing people and mentors. And so that really helped me like get opportunities, helped me form my own identity as a disabled person, helped me, helped me get into leadership roles even when I totally did not feel ready for them, and I won’t say every role I got put in, like I came in “Yes, I know what I’m doing.” I had roles I was like, “I don’t know what the hell I’m doing.” What am I supposed to do in this job?” But like that’s the best way you learn. And again, it’s like even my mentors throwing me in the deep end of the pool.

Like we have confidence that you could do it even when you don’t have confidence in yourself. And so I think that was really like important to my journey. And then just, and then just even what I learned from my own community and my own peers and fellow advocates along the way was just completely invaluable for me getting to where I’m at now.

So honestly, I think those are some of the key ingredients.

Alycia Anderson: I just think you’re a really beautiful example of, being a woman with a disability in leadership, climbing the ladder, doing really big things. And I like how you mentioned not only your parents throwing you in the deep end, but mentors too, and that’s really good leadership, right?

The leaders that are willing to say, “You know what? I see something in you. I know you don’t believe it yet, but I’m gonna put you in this position, and I’m gonna let you figure it out until you fly.” And you’re a really… you’re a Judy Heumann example, of doing a lot of really important work in really incredible rooms that is changing the world and protecting us, opening doors for us.

So I was nervous to meet you because you’re so impressive. You’re so impressive. And so much gratitude, number one, for leading our movement and taking the torch from the Judy Heumanns and the Ed Roberts and, keeping the flame burning really strong. So I just think you’re a really great example for so many people in our Pushing Forward community that are like, “How do we get there?

I don’t believe in myself. How do I start to elevate? Where can I go? What do I say?” And so I think all of those lessons that you just said are really important, so

thank you for sharing that.

Karen Tamley: Yeah. Yeah, no, of course. Yeah.

Alycia Anderson: So it’s Disability Pride Month right now. We’re in it.

What does Disability Pride mean to you, personally and professionally?

Karen Tamley: Yeah, I think it, it means to me as a community being okay with who we are, and I think all of us with disabilities have at some point in our lives, and even like constantly carry some type of internalized ableism or, shame or discomfort or whatever throughout our life, and that’s very natural.

But disability pride for me really like kinda puts us all out there and makes us feel okay about who we are. It, for me it’s about community, it’s about recognizing our progress, recognizing our self-worth as humans and having visibility and being out loud and proud.

Alycia Anderson: Yeah. And you’re leading the charge of that for sure. I love.

Karen Tamley: And it’s hard. I’m not gonna say it’s easy, and disability pride isn’t always about feeling great about our disabilities or, ’cause we all have things that are extremely personally challenging for us. But I think the idea is just it’s so important for our community. I really do think it’s important for our own visibility and our own sense of community to really have that sense of pride and feeling okay about who we are.

Alycia Anderson: Okay, and I have one more question, ’cause I really wanted to touch on this.

Karen Tamley: Yeah.

Alycia Anderson: So you and I are both aging with our disability, and we’re still doing damn good by the way, like holding it strong.

Karen Tamley: You are doing great.

Alycia Anderson: You are too, sister. We’re in this together. Talk a little bit about how aging with a disability feels from, number one, how is it how is it going, and how does it feel for you today in your age to be you?

Because I think a lot of disabled people, and I’m gonna generalize this and I might be wrong, but we might fear aging a little bit. There’s a lot of unknowns. There’s a lot of challenges that could come up. But talk about that a little bit, because you and I have talked about the challenges, but also the power in yeah, another year.

We did it. So can you just talk a little bit about what that means, to you?

Karen Tamley: Yeah. Yeah, there’s definitely fear, right? And especially when you have a rare disability and you don’t know how aging completely manifests. ‘Cause, the things that you hear about aging as a non-disabled person certainly apply, of course, but like then you have all the added things of your disability that pile onto that.

So it can be scary. We know that there are many disabled people in our community that have prematurely passed away, which is so heartbreaking and, is always something that we’re always thinking about and I’m talking about with my colleagues. So it is, it’s scary. But I think connections with the one that you and I have formed is extremely helpful both mentally, emotionally, and just practically.

I think that’s super important to connect with other people with your same disability and really having open, frank conversations about what aging looks like. It’s super scary ’cause I start to think about, “Oh my God, what’s gonna happen when da happens, and how am I gonna manage?

How am I gonna transfer? Am I going to still be able to use a manual chair? How am I gonna travel? Will I travel?” Do I need to get on it because I can still physically, do many of the things that I still wanna do. It’s become much harder I will say. But like I start envisioning what it’s going to look like in the future.

And, my envisioning isn’t always the most healthy thing. But I think you kinda gotta take it one day at a time. You’ve gotta really have gratitude for as long as we have lived. The doctors, I don’t know about you, but the doctors told my parents I would not live past 50, and I’ve far outlived that number.

But what do doctors really know anyway, right? That’s my theory. But, I think trying to stay as healthy as you can, doing the things that you know that are in your control, trying to live life, and, connect with, with your people is super important.

Alycia Anderson: Yeah. And I’m with you. You told me the 50 thing, and that was another thing that we connected on with our disabilities, right? The doctors told my parents I would not survive. She’s not gonna survive this. And 51 years later, I’m still going and feel really strong.

Is there stuff that we’re both dealing with? 100%.

But I do think we should allow ourselves to celebrate aging, and the beauty of getting to another year and another year. And just like you’re saying, I worry about my shoulders or being able to transfer or will it… Same things. Will I be not be in a manual chair and, and then I also think we’re so proficient at adapting. We’ll take it as it comes, but I love that we have this together. You and I are gonna age together. We’re gonna be old ladies in our chairs on some porch.

Karen Tamley: Yeah, exactly. Exactly.

Alycia Anderson: And I’m just, So I guess for our community that’s listening is I think we just don’t know what we don’t know, and we gotta power through.

Karen Tamley: And it’s been each year for me is like, “Oh, I did that. Next. Let’s see what next year looks like.” Yeah. Yeah exactly. Yeah, no, it, and they’re just like I said, just the value of that peer support is precious, right? And life is too. And just not taking aging for granted and also feeling it’s also a privilege to be able to age, right? Especially with a disability.

Alycia Anderson: Yeah, it is. Yeah, it is. Okay, so Access Living Chicago how do we support you? What is, what, how can communities get, our community get involved, our allies? Tell me all about that.

Karen Tamley: Sure. So Access Living is located in Chicago, but we’re a part of a larger network, like I said, of centers for independent living all across the country. There’s probably a center for independent living in a city that any of your viewers live in. Our website is accessliving.org, and you can check out our website.

We’re on social media. Facebook, LinkedIn, Instagram. So check us out that way. We also have an advocacy newsletter on our website that you can sign up for, and you will get action alerts. Some of the things, are obviously local to Chicago, but we do many action alerts around things that are happening at a national level.

So that might be a good way just to stay in touch and like I talked about earlier, like staying informed about issues that are facing people with disabilities. So that’s a great way to support us. And, we’re a nonprofit too, so people can donate to Access Living as well. We do have a donation page, and yeah, so lots of ways to get involved.

Alycia Anderson: We will link to all of your social media, your newsletter, your website, your donation page, all the things.

Karen Tamley: Awesome. Thank.

Alycia Anderson: Did we forget anything?

Karen Tamley: No that’s great.

Alycia Anderson: Thank you so much for coming on the show.

Karen Tamley: Thank you for having me.

Alycia Anderson: I forgot one thing. What is your pushing forward moment during Disability Pride Month?

Karen Tamley: My pushing forward moment is getting out of your comfort zone and taking advantage of opportunities that might on the surface feel scary to you. But once you do it and claim that you belong in that space there can be a payoff.

Alycia Anderson: Yeah.

Karen Tamley: And I’m trying to live that right now.

Alycia Anderson: You are.

Karen Tamley: No, but it’s scary. I have moments where I’m like, “I’m not gonna go to that event.

That’s not for me. That’s not… or I don’t know anybody. I’m not gonna do that.” But I’m trying to live by this kinda motto right now. It’s do everything you can, that you have time for and that, is available to you because, you deserve to be there. You deserve to be in that space, and sometimes great things can happen.

Alycia Anderson: And I love it that you admit that or bring that to the table in the level that you’re at. Even as a CEO, you can still feel, “Oh, I don’t know,” “There’s a lot to learn here still. Do I fit in? Am I…” And so that imposter syndrome stuff is always something that we’re fighting.

Karen Tamley: Yeah, exactly. 100%. Yep.

Thank you.

Alycia Anderson: I love you.

Karen Tamley: Love you too. Yeah.

Alycia Anderson: our friendship. Thank you. Thank you so much for your time, and thank you to our community for joining again. This has been Pushing Forward with Alycia and Karen, and that is how we roll on this podcast. We will see you next week.

Karen Tamley: Thank you. Bye.