More and more, it feels like our country is offering its citizens the care they need to survive, but not to thrive. At the same time, we're witnessing an increase of attempts to repeal health coverage laws like the Affordable Care Act, and privatize programs like Medicaid. This has left the disability community at the forefront of the fight to protect and expand our governments’ care resources. So, what happens when you get tired of waiting around for change and you decide to take matters into your hands? We’ll hear from a disability justice advocate who decided to run for office to bring awareness to the care crisis. As well as a mother of a medically complex child who founded her own lobbying organization aiming to influence healthcare policies in Congress. In our final episode of the season, we’re talking about care access, disability justice and the political power of the disability community. Learn more about how you can build change at actblue.com/buildthechange or follow us on Instagram and TikTok.
More and more, it feels like our country is offering its citizens the care they need to survive, but not to thrive. At the same time, we're witnessing an increase of attempts to repeal health coverage laws like the Affordable Care Act, and privatize programs like Medicaid. This has left the disability community at the forefront of the fight to protect and expand our governments’ care resources. So, what happens when you get tired of waiting around for change and you decide to take matters into your hands? We’ll hear from a disability justice advocate who decided to run for office to bring awareness to the care crisis. As well as a mother of a medically complex child who founded her own lobbying organization aiming to influence healthcare policies in Congress.
In our final episode of the season, we’re talking about care access, disability justice and the political power of the disability community.
Learn more about how you can build change at actblue.com/buildthechange or follow us on Instagram and TikTok.
Build the Change EP08 - The Disability Advocates
Opener
It was 2022. Jenn Wolff and her friend were sitting in the audience at a forum, listening to candidates running for governor.
JENN WOLFF:
The gubernatorial candidate was talking about disability issues.
Meanwhile, Jenn’s friend was thinking about another race…
JENN WOLFF:
And the person I was with said, “well, um, no one is running against Sandy Salmon,” who was running, also running for Senate.
Sandy Salmon, a Republican, had been in the Iowa House for 10 years. This election, she was running for the Iowa Senate unopposed.
JENN WOLFF:
And I made the mistake of going, “well, is it too late for someone to run?”
Jenn imagined someone else running. But her friend turned to her and said —
JENN WOLFF:
“Jenn, you should run!”
She wasn’t sold. But at lunch with her friends, they got to talking…
JENN WOLFF:
I just, I couldn't say no… it was just, I, I knew that it was gonna be an uphill battle.
JENN WOLFF:
But the way I looked at it is it was bringing the care issue to a wider audience and maybe to, um, my opponent's attention so she would pay more attention to it.
Jenn has a disability that requires her to use a wheelchair. This posed both a challenge and an opportunity for the campaign.
JENN WOLFF:
Advocacy wasn't enough. And there's not enough people like myself: female, mid fifties, single, disabled. I was a healthcare professional, an occupational therapist with the general intent of not being a politician, but being somebody who really cares about their community and wanting to create positive change.
[THEME MUSIC STARTS]
Show Intro
In partnership with ActBlue, this is Build the Change, a show about the people at the center of progress.
I’m your host, Alok Vaid-Menon. I’m an author, poet, actor, advocate… And your companion for this trip around the country. We’re in search of the most compelling causes, and stories from the candidates, activists, and everyday people driving them forward.
Many people think of disabilities through a binary lens – on, or off. But disabilities fall on a spectrum. And actually, it’s something that we are all likely to experience at some point in our lives. Even if it’s just temporary.
That’s why access and care – two core tenets of disability justice – impact everyone. And they also benefit everyone.
In this episode, we’ll hear from disability advocates who are working to improve representation and make real change for the disability community. And for all of us.
[THEME MUSIC ENDS]
Seven years ago, Jenn Wolff had her first taste of collective action. She uploaded a call to action video to Youtube to inspire other people to join.
[ARCHIVE: Jenn Video Call Out for Capitol Hill Roll Out — “The timing is essential. We go to Washington, D.C. in a week and a half for the Roll on Capitol Hill. The more of you…”]
She attended the annual Roll on Capitol Hill, a policy and advocacy conference centered around people with disabilities – and specifically wheelchair users.
[ARCHIVE: Jenn Video Call Out for Capitol Hill Roll Out — “I’m here to encourage you to share any stories you have about getting a wheelchair or getting repairs with Congress. And on social media…]
JENN WOLFF:
And about 75 to a hundred wheelchair users would come together and…
JENN WOLFF:
and it was always fun to see that many wheelchair users rolling around, uh, DC and having 20 of us trying to get on the metro at the same time. Um, and just watching people watch us, ‘cause it's such a cultural shift to see that many wheelchair users together. That was just very fun.
[MUSIC STARTS]
Jenn is from Waverly, Iowa. She was in the middle of occupational therapy school when she became physically disabled.
JENN WOLFF:
A tumor was discovered in my spinal cord. And so I'd have surgery to remove it and lost most of my function below the waist. Relearned to walk short distances with crutches and finished my master's degree. Went back to work for six months, and then it started growing again.
Jenn went through a second surgery. And then radiation. This time, it resulted in a complete spinal cord injury. And her wheelchair-use became full-time.
And that brought on new challenges. Things that were once a part of her daily life, like spending time with friends, and being out and about, became much more difficult.
JENN WOLFF:
It was time for me to get my first replacement wheelchair. And Medicare said, you only are going to get what you need to get around your home versus what you need in the community.
Jenn’s insurance wouldn’t cover a wheelchair that would help her move around outside – and participate in her community. She had what she needed to live. But not to thrive.
JENN WOLFF:
And that didn't make any sense to me when we're trying to promote keeping people as active and employed, um, and as healthy as possible. That just made no sense to me, both as an occupational therapist and as a person with a disability.
Which is how she got involved with disability advocacy. She learned to tell her story as a way to drive policy change and helped others to do the same.
JENN WOLFF:
I think when you start telling your story for advocacy, you get ownership over your own story versus somebody else telling it, um, over it being a pity party over people feeling sorry for you. It's really saying, “I'm, I'm owning what's happened to me and I wanna create change because of it.”
[MUSIC ENDS]
[ARCHIVAL NEWS TAPE: “Iowa Medicaid faces significant criticism since Iowa governor Terry Branstad privatized it in 2016…]
A few years later, when Iowa’s governor made the abrupt decision to privatize Medicaid, Jenn was at the forefront of the opposition. This shift impacted poor Iowans and people with disabilities the most.
[ARCHIVAL NEWS TAPE: “After a state audit found insurers were illegally denying people care and…]
The complaints began piling up – people were being denied services illegally while private insurance companies continued pocketing payments.
Wheelchair users were experiencing horrendous wait times for medical equipment repair.
JENN WOLFF:
Our insurance doesn't really cover caregiving the way it should.
JENN WOLFF:
People are ending up in institutions, um, at least in the disability community. When they really, if they would have four to five hours of support, they would be able to stay home and potentially work and volunteer — and, and feel like they have more value and be more valued in our communities.
The increasing frustration echoed among Jenn’s friends. And they turned to Jenn for leadership.
JENN WOLFF:
I started hearing from my friends, “Jenn, what can we do? We need to make a change.” So we started our own group, here in in Iowa called Upgrade Medicaid to try to influence changes to policy, knowing that we probably weren't going to change the privatization, but to make improvements at least.
[MUSIC STARTS AGAIN]
The group started off with two days of advocacy.
[Jenn’s Call to Action video: Community Living and Caregiver Advocacy Day Feb 20th — “Please consider joining us for our first major community living and caregiver advocacy day…]
A group of caregivers and wheelchair users came together at the Iowa State Capitol in Des Moines. They used their personal stories to advocate for policy change.
JENN WOLFF:
The first time we had 13 wheelchair users and caregivers, so we had about 21 folks. And they said that that was probably the biggest amount of physical disability that they'd seen together. The next year we had 80 people total.
In the mornings they prepared together — going over the current state of Medicaid policies. They discussed the most effective way to share how they’d been personally impacted by the privatization of Medicaid with their legislators.
JENN WOLFF:
So it's really, you know, teaching people how to have relationships with their legislators. We spent the afternoon writing notes and, and going up and helping each other, uh, talk to our legislators.
But despite all the grassroots advocacy she was doing, Jenn felt like there wasn’t any real progress with Medicaid, or the care crisis in general. She was frustrated.
[MUSIC ENDS]
That’s when she went to that gubernatorial forum where her friend suggested she run as a candidate for the Iowa Senate. Despite her nerves, Jenn agreed it was the best way to raise awareness and push for real change.
Now, Jenn had to figure out how to campaign — something she’d never done before, while also confronting accessibility barriers and prejudice.
JENN WOLFF:
When people first see the wheelchair, they — the implicit bias is, is that she isn't either as intelligent or, um, has other deficits, or has a poor quality of life. And that's just implicit bias. And I, I get that because I probably had those before I was in the wheelchair too. Um, so you kind of have to work twice as hard to build credibility.
[MUSIC STARTS]
She came across an online campaign training that was specifically created for people with disabilities. It was created by Sarah Blahovec and Neal Carter, the co-founders of Disability Victory – an organization that aims to equip leaders with disabilities with the skills they need to run for office. Here’s Sarah:
SARAH BLAHOVEC:
So there were no campaign trainings specifically for people with disabilities who, you know, are facing barriers on the campaign trail — both in terms of accessibility and also in terms of stigma and, and prejudice.
Disability Victory is looking to flip the script on that – teaching candidates how to incorporate their lived experiences and disabilities into their campaign. With the view that it’s a strength, not a weakness.
SARAH BLAHOVEC:
We had three of our training programs last fall where we talked about building your brand as a candidate, and how to incorporate talking about disability into that. Creating a policy platform, and using advocacy within your campaign to affect change even before you are elected to, to office.
The organization makes sure that accessibility in their training is a top priority. For example, they make sure to have American Sign Language interpretation, and provide any training materials ahead of time for people who need time for cognitive processing or who use assistive technology.
Through their work, Sarah and Neil are looking to counter ableism they saw in other campaign programs.
SARAH BLAHOVEC:
Ableism is something that is really casually ingrained in society.
SARAH BLAHOVEC:
There was another, a program that, um, had a Q&A page where they were asked, you know, can disabled people be involved in campaigns? And it said, yes as volunteers. Where it was not really in the, the consciousness that disabled people could be campaign staff or, uh, candidates.
Which brings us back to Jenn.
She wanted to run for office because she was tired of constantly having to fend off attacks on her rights – and the rights of her community. She spent months connecting with folks, and speaking to her experience.
As a person with disabilities running for office, she relied heavily on online organizing. But she also got out there and went door to door. These are the kinds of things that Disability Victory prepares candidates for – running an accessible, successful campaign.
Election night rolled around. Most of the restaurants in town closed at 9. So Jenn and her campaign committee were at a local bar, joined by her close friends and supporters.
[DOOR OPENS. BAR AMBIANCE]
Her campaign was a longshot. She wasn’t expecting much. Still, she was nervous…
[MUSIC STARTS]
JENN WOLFF:
Election night, I was much more apprehensive than I thought I would be.
JENN WOLFF:
The first votes that came in showed that I was doing really well [laugh] and that really kind of freaked me out 'cause I wasn't prepared to win. Um, but, I got 32%, which for the first run in a very red area, I, I was, I was not disappointed with that.
So Jenn didn’t win her first campaign. But, she felt like she had achieved her real goal: making her platform of care, and disability justice, a core focus of the broader campaign.
JENN WOLFF:
We made a dent. And that's, that's kind of what I, I wanted, I aimed to do.
Her bold decision gave a voice to many Iowans experiencing the same challenges she was – including privatized Medicaid.
While she didn’t expect to win, Jen still felt the loss.
JENN WOLFF:
You do get a little bit depressed afterwards because you put in a lot of time and a lot of work. And it is, it's, I wasn't sure I was gonna run for anything again. In fact, I really kind of had decided I wasn't going to.
[MUSIC ENDS]
It takes a toll - putting yourself out there.
But most candidates lose their first election, especially against an incumbent and now Jenn’s name was out there.
She was approached by Waverly’s city council representative, Julie Meyers, who was looking for a replacement. She wanted Jenn to consider running.
Jenn was apprehensive. Not just because she’d lost the longshot state senate race. But she’d actually been contemplating leaving Waverly altogether. Lately, she was feeling isolated – and like she didn’t belong.
[MUSIC STARTS]
JENN WOLFF:
I, I wasn't sure I was gonna stay in Waverly.
JENN WOLFF:
I haven't always felt part of my community because of my disability. But it's very isolating being in a wheelchair. You're stuck at home a lot. You can't go visit your friends in their homes. Um, there's some places that you just can't access.
JENN WOLFF:
Like there's not accessible transportation.
But she still harbored a deep love for her hometown – and the people in it. So Jenn considered the offer to run again for public office.
JENN WOLFF:
I started talking about it with my family and in my head. And kind of decided if I can't make change at a state level, that maybe I could try to make some change locally.
[MUSIC ENDS]
She decided to do it – again. And her previous experience proved helpful. Because this time around, campaigning was a lot less stressful. There was less area to cover. Door knocking was more doable. And she even recruited her neighbor to help.
[MUSIC STARTS]
JENN WOLFF:
He's in his eighties and he was my door knocker, uh, champion. Um, we went out together several times into different areas of town, and he'd go up and knock the door…
[KNOCK]
…and start conversation, and then let me take over. They'd come outside. Um, and fortunately the weather was nice enough, um, that they could come outside and talk, and then he’d….
[KNOCK]
… go across the street and start another conversation. So we were just buzzing around.
[KNOCK]
JENN WOLFF:
It was more listening. What's good in the community, what needs to change? And that was, were my kind of two questions that I went around when we door knocked.
[KNOCK]
And with each knock.
[KNOCK]
Each new conversation.
[BUZZ]
Jenn’s feelings changed.
[MUSIC ENDS]
Running for office opened the door for Jenn to reconnect with her local community again —
JENN WOLFF:
— community again. And I value that piece out of that first run more than anything else.
[MUSIC STARTS]
Election night came. Jenn spent the evening at a get together organized for the mayoral candidate, surrounded by other city candidates as they waited for results to come in.
JENN WOLFF:
I was around a lot of supportive folks.
JENN WOLFF:
It was fun to see things start coming in and still not knowing if you're gonna win or not.
The votes kept coming in…
And then, the results.
Jenn was elected as the newest member of Waverly’s City Council.
JENN WOLFF:
It was a good election. It feels like after several years of being very disappointed about elections at the local level, it was a very—across the board, we got great people
Later that night, Jenn met up with her friends at a bar and celebrated with a nice quiet drink.
JENN WOLFF:
Of course my friends are like, “can you believe it?” And it's a, uh, kind of a little bit, no, but a little bit, yes. Just really excited for the new challenge.
JENN WOLFF:
Now… now the work kicks in on a totally different level. And it was a totally, it's such a big learning curve, so many things to learn about how a city functions.
After winning the city council campaign she headed to the store for a new pair of shoes…these ones were special.
JENN WOLFF:
I wear Converse Chucks all the time, and I got a pair with pink glitter on it. And I call them my no place like home shoes, and they remind me all the time about how, how glad I am that I'm staying, um, in my community. And trying to make it more accessible.
[ARCHIVE: City Council Meeting: “Wolff? Yes.”]
This is Jenn during Waverly’s council meetings. She is now in her first year of office.
[ARCHIVE: City Council Meeting: “Councilperson Wolff.” “I will add on top of sidewalks, curb cuts, and the handicap—or the accessible parking spots hatch marks—which just make my life a lot easier.”]
[MUSIC STARTS]
She’s currently working with the Chamber of Commerce to make the city more accessible. In the spring, they will be conducting an accessibility check to see where the city needs improvement and commend the businesses that have made those efforts.
One community member who uses a power chair has spoken to Jenn about the improvements he’d like to see.
JENN WOLFF:
He goes all over town all the time. Um, and he really knows the ins and outs of what, what's working and what's not, and making sure that the, the town is more walkable, um, or rollable for, you know, whoever uses it.
These improvements would benefit many, not just those with disabilities. Parents with strollers, kids in roller blades, or teenagers biking around town — disability justice can expand access and care for everyone.
JENN WOLFF:
We all will deal with a disability at some point in life, more than likely. Um, and that it really, it should be normalized.
[MUSIC ENDS]
Jenn’s story shows us why we need more elected officials who personally understand the challenges of things like navigating Medicaid and Social Security. Elected officials who can advocate for the people they serve. But even without representation in place… you can still have your voice heard.
Let’s talk about the people working to lobby Congress on behalf of disability rights.
[MUSIC STARTS]
The summer of 2017 was typically hot and humid in our nation’s capital. Despite the heat, members of Congress nearly all donned suits. They were preparing to propose a bill: one that would strip many of the protections in the Affordable Care Act.
[MUSIC ENDS]
Elena Hung:
It felt very personal. It felt like they were really coming after healthcare, I mean, coming after the healthcare that our children relied on.
That’s Elena Hung, the founder of Little Lobbyists, an organization working to advance and protect the rights of medically complex and disabled kids.
[MUSIC STARTS]
At the time, in 2017, she was a lawyer – and a new mom. She was just a few miles away, in Maryland at a friend’s house. The kids had gone to bed. And the parents stayed up, talking about the news.
She was tired of sitting at home. She looked at the other parents sitting with her – and decided to make a plan.
Elena Hung:
It really was this moment of, I would say hope and desperation that got us to do something.
They decided to go talk directly to the people who were set to make a decision that would alter the course of their lives.
[MUSIC ENDS, TAPE PLAYER SFX]
Elena’s daughter Xiomara spent the first five months of her life in the neonatal unit at the hospital. Then, Elena was able to bring her home – with the help of 24 hour care. It was overwhelming, to say the least.
Elena Hung:
It’s a blur. It's a blur. I think my brain has blocked out a lot of it for self protection. Um, but it was, it was one of the hardest things I had ever gotten through.
[TAPE PLAYER SFX STOPS]
She needed support. She went looking for other people going through the same thing.
Elena Hung:
So I went online. [laughs] I went on Facebook and basically if you were in the DC, Maryland, Virginia area circa 2014, and you had a child with a tracheostomy, I think I found you.
[MUSIC STARTS]
She had found a community of other families. And, they got together to prepare. They wrote up flyers. Printed photos. Packed their bags…and got on the Red Line, to take the Metro ride from Maryland to the Capitol building.
A few other families drove in. And they convened in the halls of Congress. For most of them, it was their first time on the Hill.
They had called in advance to a few offices to reserve time with Senators or their staff. They also tried to get additional appointments.
Elena Hung:
Sometimes we [laughs] we would see members of Congress and we chased them down the hallways.
They were doing all of this so they could get answers to this one big question:
Elena Hung:
What would happen if, if our families lost Medicaid, if our families lost the protections of the Affordable Care Act, what would happen to these children?
With this vote, so many of the things she’d relied on to bring her daughter home and keep her alive were up for debate. That included bringing back caps on the amount insurance would cover…
Elena Hung:
The possibility of that coming back was terrifying to families like mine.
Elena Hung:
Her five months in the hospital cost $3 million, which means that had you had a cap on her plan, she would've lost her insurance before she even came home from the hospital.
Elena would have racked up thousands of dollars in debt. And that’s not even accounting for the costs after coming home: the round-the-clock home care that allows Elena to work, so she can pay for the rest of the family’s bills.
Another part of the proposal was looking to limit protections for people who have pre-existing conditions.
Elena Hung:
My daughter has over 10 pre-existing conditions 'cause she's an overachiever like that. [laughs] So that means that if we were to switch insurance plans for whatever reason, we might not get it because she has preexisting conditions.
By showing up and telling their stories, they wanted to put faces to the vote that was about to take place.
Elena, Xiomara, and the other families spent hours meeting with Senators and staffers. And still, they didn’t even get to all the appointments they’d made. So they decided to go back a second day.
They repeated the process. And again, it felt like it wasn’t enough. So they went back again.
Elena Hung:
Basically we showed up to every place that we could get to, and we grabbed every microphone that we could get our hands on, and we told our story to anyone who would listen. And we did all of this with our children at our side.
The vote loomed. Elena and the other parents were still stressed, but it felt good to do something. They kept the pressure up…
And then, on July 28, 2017, it was time.
Nearly two months after Elena first set foot on Capitol Hill, Congress Set a date to vote on the healthcare bill.
[ARCHIVE: Senate Session –
“Mr. Alexander.
Ms Baldwin.
No.”]
It was nearly one in the morning. At home, Elena anxiously refreshed her phone.
With a Republican majority in Congress, things were not looking good.
[ARCHIVE: Senate Session –
“Mr. Paul.
Aye.
Mr. Perdue.
No. Sorry, yes.
Thank you.
Mr. Peters.
No.”]
Sen. John McCain approaches the podium to vote.
[ARCHIVE: Senate Session –
“No. [gasps and claps]”]
Sen. John McCain, in a shocking turn of events, votes against the bill. Meaning the health care protections Elena and other families relied on were safe – for now.
Elena felt…relieved. But also angry. She was tired of constantly having to be on the defensive.
Elena Hung:
A child like mine with complex medical needs, with a tracheostomy on a ventilator, would have been automatically institutionalized years ago. Automatically institutionalized. And what I mean by that is that she would have never had the opportunity to come home – to be discharged from the hospital.
Elena Hung:
And in fact, that is still happening in some states today.
Elena Hung:
So in light of that, you know, us applying for Medicaid to get the home care that she needed, um, really meant the difference between whether we got to bring our baby home or not.
[MUSIC STARTS]
And having the care she needed to be at home made all the difference.
Elena Hung:
So my daughter right now is nine years old.
Elena Hung:
Such a joy to watch her grow up and become the person that she's becoming. Um, I'm getting all teary eyed, ‘cause it is emotional.
Elena formally founded Little Lobbyists, an organization that continues the work she and her friends started: lobbying on behalf of medically complex and disabled kids. Not only to protect their rights, but to advance them, too.
[MUSIC ENDS]
[THEME MUSIC STARTS]
Let’s support the people and organizations driving disability justice. Because Disability justice touches nearly every issue. And so when it becomes part of policy – we all benefit.
ActBlue is here to help you find, support, and even fundraise for the candidates and causes you’re passionate about. Learn more about the organizations featured today – Disability Victory, and Little Lobbyists – and maybe even how to start your own fundraising journey – at actblue.com/buildthechange.
This is our final episode this season. Thanks for joining us!
Build the Change is created in partnership with ActBlue, produced by Wonder Media Network, and hosted by me, Alok Vaid-Menon.
Our production team includes Edie Allard, Lindsey Kratochwill, Sara Schleede, Abbey Delk, Hannah Bottum, and Paloma Moreno Jimenez. Our executive producer is Jenny Kaplan. Our showrunners are Rohita Javangula and Maria Jose Hurtado.
[THEME MUSIC ENDS]