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Alice Wong in her wheelchair, with her breathing device. Behind her, a tiger-striped orange background with blue flowers decorating the edges. (Graphic by Lissa Deonarain)
This episode honors the life and legacy of Alice Wong (Mar 27, 1974 – Nov 14, 2025). We start the show with the Making Contact segment she produced in 2015, exploring the complex relationships between caregivers and care receivers: the vast majority of care recipients are exclusively receiving unpaid care from a family member, friend, or neighbor. The rest receive a combination of family care and paid assistance, or exclusively paid formal care. Whether you’re a paid home care provider, or rely on personal assistance to meet your daily needs, or a family member caring for a loved one, the nature of the working relationship depends on mutual respect and dignity. The segment includes a conversation with Patty Berne, co-founder of Sins Invalid, who passed away in May 2025.
The show continues with an excerpt from Wong’s powerful essay, Diversifying Radio with Disabled Voices, which is a powerful call for better inclusion and representation of disabled voices in audio journalism. The episode closes with Alice’s reading of Laura Hershey’s 1991 poem You Get Proud by Practicing.
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Transcript:
[Making Contact Button]
Jessica Partnow: Welcome to Making Contact. I’m Jessica Partnow, your guest host. And this week we are honoring the legacy of an incredible person that we lost in November of 2025.
Alice Wong: Hi, my name is Alice Wong and I was selected as a community storytelling fellow at Making Contact.
Jessica Partnow: In 2015, Alice Wong was part of a storytelling fellowship program here at Making Contact where she got to learn and practice audio storytelling skills and produced a radio story.
Alice Wong: I’m excited to create a story about the lives of people with disabilities who use personal assistants and their relationships with their home care providers. People with disabilities are usually the subject of a radio story, but rarely is the person creating the story disabled as well. Representation on both sides matters.
Jessica Partnow: Alice was an activist and an advocate. She was a MacArthur fellow. She was appointed by President Obama to serve on the National Council on Disability. She founded the Disability Visibility Project and published work in dozens of publications from the New York Times to Making Contact. The nation called her the first disabled public intellectual.
She was only 51 when she died. Her time at Making Contact came relatively early in her rise to public intellectual status. Let’s start the episode off by listening to the story Alice produced as a community storytelling fellow here at Making Contact. The first voice you’ll hear is Camille. She works as a personal assistant for people with disabilities.
Camille Christian: The minute I walked through the door — her name was Gladys — her face would light up and she’d be so happy. “Come on, Camille, this is what we’re doing today. We’re going to do this, that, and the other.” And we would map out our day. I’d clean the house, get everything done, get her bathed, lay out her clothes for the day. “This is what you can wear.” And I’d drive her to do whatever it was she needed to do.
Laura Flynn: Camille Christian is an in-home care provider. Bathing, feeding, dressing, cleaning are among a laundry list of daily living activities involved in long term care work. It’s labor intensive. You’re also seeing someone in their most intimate moments. Home care worker Brenda Jackson says her clients are like family.
Brenda Jackson: As a matter of fact, I call her Aunt Mary, so she’s part of my family now. That’s why it’s important for me to make sure she’s happy and she’s comfortable but she’s in her own home.
Laura Flynn: Christian says that it’s also a matter of dignity.
Camille Christian: Everybody needs to feel that they have their own self respect, that they have their own dignity. And it makes me feel good to know that I’m helping someone have that.
Laura Flynn: That dignity depends on a balanced, healthy relationship between those receiving care and those giving. So how do we ensure quality care for both, especially as demand for care work is expected to grow? By 2030, the number of senior citizens is projected to double to 72 million. As more seniors move into older age brackets, the demand for a younger generation of workers and family members to help with day to day life will increase too. A 2015 report by UC San Francisco estimates that at least 2.5 million more workers are needed to fill the long term care gap. For workers, fair wages, employment protections, job growth, and training are some ways to ensure sustainability in the industry, according to the study’s author, Joanne Spetz. Whether you’re a paid home care provider, or rely on personal assistance to meet your daily needs, or a family member caring for a loved one, the nature of the working relationship banks on mutual respect and dignity.
On this edition of Making Contact, we’ll explore the dynamic and complex relationship of care receiving and giving. Community Storytelling Fellow Alice Wong asks: how do people with disabilities who rely on personal assistance negotiate their relationships with the people that assist them? And how does that inform their sense of independence or interdependence with others?
Alice Wong: Hey, Mom, I’m ready to get up. Not too bad. Okay. I don’t want to get up. But here I am, in bed, needing to get up and get in my wheelchair. From the minute I wake up, I’m connected to people. Can’t get away from it, even if I wanted to.
Kenzi Robi is an artist in San Francisco who has multiple people that work for him. Like me, he’s in bed when his attendant arrives.
Kenzi Robi: I have no use of my legs, so I’m very dependent on care providers. When someone comes in in the morning, the first thing they need to do: wash their hands, get gloves, and then check and be sure I’m clean. And I can’t urinate unless someone inserts a catheter inside my bladder, and I need to do that several times a day.
Alice Wong: When you need help with almost every aspect of your life, it changes the way you relate to others. I got a chance to talk with some of my disabled friends in the Bay Area, exploring their relationships with people who help them with their daily activities. Kenzi says it’s different each time he trains a new attendant.
Kenzi Robi: And I’ve had people that are able to be directed and able to be taught the procedure within 30 minutes or 2 hours. I’ve had other people who feel like, why are you picking on me? Why do I have to change my gloves? You’re wasting material and I have to tell them that the gloves are disposable, I’m not.
Alice Wong: Some people have spouses and family members as their attendants whether they’re paid or unpaid. Inga Tischer lives in Berkeley with her husband. Here’s their typical morning.
Inga Tischer: When we get up, he’s the person in the household who gets the day started by making the coffee, starting the breakfast. I sleep at night using a BiPAP machine. So I get up and take care of that. This is funny, but I would say in the time that I’ve been married, it’s probably been the first time in my adult life when I could wear pretty much anything I want or do something with my hair without it being a big deal. And he can help me button things, pull things on, zip things and then tie my hair back if I want. He’s really good natured about it.
Alice Wong: Another Berkeley resident, Alana Theriault, has been living independently for 34 years. She employs six attendants and extra backup workers for shifts throughout the week. They go where she goes, including the home and out in the community.
Alana Theriault: I hate driving on the freeway, but they’re all very good sports and drive me where I need to go and then, bring me home, set me up with a snack, help me open my mail, do whatever paperwork in the house, make dinner, and they leave at 6pm. And at that point, I have a little downtime, which is nice, I guess.
Alice Wong: Having privacy can be hard when you need assistance often.
Alana Theriault: I don’t have enough alone time now. I have the care hours that I need, and that’s fabulous, but at the same time, I don’t have the alone time that I miss. I miss that now.
Alice Wong: Anyone who uses personal assistance is part director, choreographer, and actor. Patty Byrne is the director of Sins Invalid, a performing arts group in Berkeley. She compares her work to how she gets her needs met.
Patty Byrne: Seriously, people are like, “Where do you get such skills?” And I’m like, “Well, you know what it takes me to get dressed every day? That is a production.” So of course I can manage a show. I produce an event every day when I’m dressed and fed and comfortable. It’s like choreography, right?
Alice Wong: Being disabled and using personal assistance isn’t a solo act. It’s an ensemble production where relationships are the key to a successful show.
One pivotal scene in my daily drama is how I gotta have my coffee every afternoon when working from home. Since I can’t make it myself and I’m picky about my coffee, I communicate clearly. And supervise my mom, who is one of my attendants. My addiction to coffee is at stake, and I must be satisfied.
Alice Wong: Thanks, Mom.
Alice’s Mom: You’re welcome.
Alice Wong: For Alana, it’s all about teamwork.
Alana Theriault: I try to foster relationships between the workers. It’s nice because usually I have two to three days of training, and there may be one or two attendants involved in that training. So right off the bat, they meet each other. And I’ll encourage them to say, “Huh, I don’t know, maybe we should call someone’s sub to find out how we deal with this problem.” Or, I encourage them to call each other when they need a sub, so it’s not just all an email.
Alice Wong: There are a lot of ways disabled people express their thanks to their attendants. Showing gratitude can go a long way.
Alana Theriault: Once a year I host an Attendant Appreciation Dinner, where we go out. As I build relationships with them, they care about me, and I care about them.
Alice Wong: Care is involved in the work of personal assistants, but it’s impossible to ignore the power dynamics. Rachel Stewart, who lives and works in Alameda, describes the give and take nature of the relationship.
Rachel Stewart: I think I’m still learning and I think that, like you said, it’s a very fine line, but it’s kind of like also letting people know when like the line has been crossed. It’s like, “Okay, I really need you to be on time because I’m going to pee my pants unless you’re here on time.” Just being really frank and up front with people is really important and being honest, but also like showing your appreciation. It’s a hard one to navigate.
Alice Wong: Navigating these boundaries can be tricky, especially if your attendant is also your family member. Ingrid describes the understanding she has with her husband Ken.
Ingrid: I don’t ever have to be concerned, for example, that one of us is going to use our argument to sort of get back at the other one in the course of assisting, usually me, with something. I think it’s important for the health of the relationship because at some point, Ken is going to need help from me more than he does now. I think we have a foundation of knowing what each other’s limits are and what we will not transgress. That’s what the health of the relationship is built on.
Alice Wong: Appreciation, trust, communication, and a shared sense of responsibility can keep relationships strong between attendants and disabled people. Keeping balance between your actions and your politics is another vital aspect. Patty recalls a time when she supported her attendant.
Patty Byrne: One of my attendants unfortunately, she recently broke her wrist. And rather than being like, “Okay, you’re disposable, I’m just going to hire somebody else,” I hired an assistant for her to help with the pieces of the routine that she couldn’t do anymore. because that makes sense. And so how do we meet our needs collectively? And it’s really cool because these nuances of movement that she didn’t realize I was contributing to the routine. “She’s doing one handed. She’s seeing things. Patty’s supporting her own balance.”
Alice Wong: So for Patty, this is an example of disability justice in action. Communities can create collective access, and no one is disposable.
Jessica Lehman is the Executive Director of Senior Disability Action in San Francisco. She tells me when she first connected disability justice with domestic workers rights.
Jessica Lehman: What happens at my home is, you know, a little piece of that big picture that I’m talking about and that I have really committed my life to. And it just felt like the best example of the personal is political and of what an opportunity I have to learn and to live my values, to tie together what I care about, to bring the values that I put out into the world, to really feel that in my own body and in my own home, and to be able to work on that with other people.
Alice Wong: Hey mom, I’m ready to go to bed now. Okay, go to sleep, it’s late. Can you turn on my hospital bed? And can you turn on the oxygen, please?
Well, it’s time for me to go to bed. As my mom turns on my oxygen machine and my air mattress, I’ll leave you with these final thoughts. Disabled people and their attendants are both vulnerable and resilient. Our relationships and well being are linked. How we treat each other is a reflection of our lives of the kind of world we want to live in.
Our labor has value. We are stronger together. For the Making Contact Storytelling Fellowship, I’m Alice Wong.
Jessica Partnow: That segment was hosted by Laura Flynn and produced by Alice Wong. You’re listening to Making Contact. I’m Jessica Partnow. This week we are celebrating the life and legacy of Alice Wong. I personally only really got to know Alice’s work a few years ago. My husband became disabled in 2020, and overnight we found ourselves living in a completely different world.
You know, we could just get trapped on a block where there wasn’t a curb cut. Suddenly we couldn’t go over to most of our friends’ houses because they all had stairs. When he talks, people will be sure that they just can’t understand him because his voice doesn’t sound like what they’re expecting. People will talk to me about him, like he’s just not there.
It can be really lonely. So when I found the company of Alice’s writing: her openness and vulnerability, her fiery frustration, it was a big relief just to understand that we weren’t alone and that we were very, very much not alone. Many, many people were living with these kinds of experiences and had been for a long time and had been working as activists and advocates in this space for many years before it entered my life so personally.
Alice wrote about this as part of her storytelling fellowship here at Making Contact. She wrote a piece called Diversifying Radio with Disabled Voices, talking about some of the ableism that is very, very present in this field. You can find the full essay at our website, focmedia.org.
It is a wonderful piece. I really encourage you to read it and I want read an excerpt of it here called The Story of My Voice. I love this section of the piece because it’s coming from the perspective of a person with vocal difference. I wish that we could be listening to Alice’s voice read this, but I will try to do her beautiful writing justice with my voice.
Story of My Voice, an excerpt of an essay by Alice Wong:
“In 2015, I started becoming interested in radio as a result of a community partnership I formed with StoryCorps focused on recording the stories of people with disabilities. I had concerns about people who would be excluded from participation due to the audist nature of oral histories. As I figured out ways to provide options and access for people who communicate visually or non-verbally, I thought more about the medium of radio and whether disabled lives, voices, and bodies are considered part of the public media landscape.
I have a neuromuscular disease called spinal muscular atrophy–this is a progressive condition where all the muscles in the body slowly weaken over time. My body’s changed over the 40-something years of my life: I transitioned from walking, to using a walker, to a manual wheelchair, electric wheelchair, customized wheelchair. Throughout this process, I learned to adjust. Over time I required more assistance, coming in the form of personal assistance, technology, or services. Even with a healthy set of lungs, my lung function has steadily declined since I turned 18 because of my weakening diaphragm muscles that are responsible for the act of breathing. In fact, I had a medical crisis when I went into respiratory failure due to sleep apnea. My diaphragm needed support and that’s when I started using non-invasive ventilation. I became Darth Vader.
A Bi-Pap machine provides ventilatory support. That is, the Bi-Pap pushes breaths of air into a person’s lungs at a set rate and volume; these breaths enter the body through a tube and mask. It is a lifesaver and something I’ll use for the rest of my life. I’m now in a phase in my life where I use the Bi-Pap during the day. This started about two years ago and is now the norm. Using the Bi-Pap in the day meant a lot of changes and adjustment. I have a machine by my bed and one that I can carry on the back of my wheelchair. The one on my wheelchair has a battery–something that is invaluable and facilitates my ability to be in the community. As I attend meetings and gatherings, I noticed a difference in the way people related to me. I have to repeat myself because people can’t understand me. If a breath is coming in right in the middle of speech, I have to pause, leaving these unnatural and awkward speech patterns. When I talk too long when using my mask, I tend to salivate a lot and need to pause to swallow. This can be especially frustrating if I’m in public spaces trying to order something at a cafe or asking a question to someone at Trader Joe’s. I find myself having to suppress the feeling of being self-conscious and embarrassed at my vocal difference.
A big part of my identity, ego, and self-image is centered on my voice and writing. I had to confront my discomfort and accept my new sound and body that has become even more cyborg-like as time goes on. I had to regain my sense of pride and that only happens through practice, to paraphrase Laura Hershey’s poem, “You get proud by practicing” (March 1991). Even with my politicized disability identity, I have to remind myself that the problem isn’t located in my body but society and my own internalized ableism. I also have to remember I am not alone and am part of a large community of disabled people with vocal differences….”
Radio, like any cultural institution, enforces normalcy. This normalcy is centered on the ability to hear and speak ‘well.’ With the exception of community radio that feature radio shows by disabled people (e.g., Pushing Limits on KPFA, Disability Matters on VoiceAmerica) and podcasts, you don’t hear a lot of people that sound different due to disability on public radio except for Diane Rehm. It’s time for people in radio to think critically about messages they are transmitting by excluding certain voices and lived experiences.
Symphonic Disabled Voices
Jessica Partnow (reading an excerpt):
On radio, I want to hear people who…
lisp
stutter
gurgle
stammer
wheeze
repeat themselves
pause when needing to breathe
make noises when they talk
salivate and drool
communicate, enunciate, and pronounce differently
use different speech patterns and rhythms
use ventilators or other assistive technology
use sign language interpreters or other people that facilitate speech
use computer-generated speech…I want to disrupt what’s thought of as the default public radio voice. I want to challenge listeners as they ride the subway, jog on their treadmills, driving on their commute. Even if the sounds and words we create might require greater concentration and attention.
That was an excerpt from Alice Wong’s essay Diversifying Radio With Disabled Voices. You can read the full piece at focmedia.org.
In that essay, Alice mentions a poem by Laura Hershey called You Get Proud by Practicing, written in 1991. And we’re so lucky that Alice recorded herself reading it. So here it is. Alice Wong Reading You Get Proud by Practicing, a poem by Laura Hershey:
Alice Wong (reading):
If you are not proud
for who you are, for what you say, for how you look;
if every time you stop
to think of yourself, you do not see yourself glowing
with golden light; do not, therefore, give up on yourself.
You can
get proud.You do not need
a better body, a purer spirit, or a Ph.D.
to be proud.
You do not need
a lot of money, a handsome boyfriend, or a nice car.
You do not need
to be able to walk, or see, or hear,
or use big, complicated words,
or do any of the things that you just can’t do
to be proud. A caseworker
cannot make you proud,
or a doctor.
You only need
more practice.
You get proud
by practicing.There are many many ways to get proud.
You can try riding a horse, or skiing on one leg,
or playing guitar,
and do well or not so well,
and be glad you tried
either way.
You can show
something you’ve made
to someone you respect
and be happy with it no matter
what they say.
You can say
what you think, though you know
other people do not think the same way, and you can
keep saying it, even if they tell you
you are crazy.
You can add your voice
all night to the voices
of a hundred and fifty others
in a circle
around a jailhouse
where your brothers and sisters are being held
for blocking buses with no lift,
or you can be one of the ones
inside the jailhouse,
knowing of the circle outside.
You can speak your love
to a friend
without fear.
You can find someone
who will listen to you
without judging you or doubting you or being
afraid of you
and let you hear yourself perhaps
for the first time.
These are all ways
of getting proud.
None of them
are easy, but all of them
are possible. You can do all of these things,
or just one of them again and again.
You get proud
by practicing.Power makes you proud, and power
comes in many fine forms
supple and rich as butterfly wings.
It is music
when you practice opening your mouth
and liking what you hear
because it is the sound of your own
true voice.
It is sunlight
when you practice seeing
strength and beauty in everyone
including yourself.
It is dance
when you practice knowing
that what you do
and the way you do it
is the right way for you
and can’t be called wrong.
All these hold
more power than weapons or money
or lies.
All these practices bring power, and power
makes you proud.
You get proud
by practicing.Remember, you weren’t the one
who made you ashamed,
but you are the one
who can make you proud.
Just practice,
practice until you get proud, and once you are proud,
keep practicing so you won’t forget.
You get proud
by practicing.
Jessica Partnow: Thank you to Alice Wong for a lifetime of getting proud by practicing. Rest in power. That’s it for Making Contact this week. Thanks for listening. I’m Jessica Partnow.
More stories like this:
Alice Wong investigates interdependence between the disability and caregiver communities
Caring Relationships: Disability and Maintaining Dignity (Encore)
Caring Relationships: Negotiating Meaning and Maintaining Dignity
Caring Relationships: Negotiating Meaning and Maintaining Dignity
Caring Relationships: Negotiating Meaning and Maintaining Dignity ENCORE
