Alice Wong On Medicaid, Rage, and “Good Care”
Alice Wong: In the past, I identified as a disabled cyborg, and now my body is even more of a cyborg as I am tethered and power dependent on a number of machines to stay alive, and knowing a power outage or malfunction can become a life or death situation can really do a number on you.
(opening theme for Death, Sex & Money)
This is Death, Sex & Money.
The show from WNYC about the things we think about a lot…
...and need to talk about more.
I’m Anna Sale.
(end of opening theme for Death, Sex & Money)
I first talked with disability rights activist and writer Alice Wong back in 2020. She’d just edited a collection of essays called Disability Visibility.
(Pale Canyon – Blue Dot Sessions)
Since then, she’s published another book, a memoir called Year of the Tiger: An Activist's Life. It’s unlike many other memoirs I’ve read, with a mix of writing and excerpts of talks and interviews she’s given, including an excerpt from her Death, Sex & Money episode where Alice told me, with biting humor, about the horrors of high school for her. Just before that memoir came out, Alice had a major medical emergency, and she ended up losing the ability to speak and eat. We want to share that original episode with you again this week. We reached out to Alice for an update, so we sent her a list of questions. She recorded her responses using a text-to-speech app.
(end of Pale Canyon – Blue Dot Sessions)
Alice Wong: Last summer, I had a series of medical crises that led to four weeks in the ICU. It was one of the most harrowing experiences in my life. I lost the ability to speak and eat. I now have a tracheostomy that is attached to a ventilator that breathes for me 24 hours a day, and a feeding tube in my stomach and small intestine that is attached to a machine for hydration and nutrition. I had to adjust and learn new ways to communicate. I missed my voice dearly with my inflections, guffaws, profanity, and sarcasm. But I live in an era where apps like the one I am using right now, give me a chance to speak, albeit in a sterile voice that mispronounces words, which drives me up the wall. While I was in the hospital, I communicated by writing in a notebook or mouthing words and making gestures to my sisters. When I got home and slowly recovered, the strength returned to my hands and I was able to type and text again.
Alice spent four weeks in the ICU before going back to her home in San Francisco. And almost a year later, she’s still resting and being extremely cautious.
Alice Wong: Here's some real talk. Except for my family and team of paid caregivers who come in and out of my home, the last time I had a hangout with a group of friends was about five months ago. I'm lonely, but I'm not alone.
I am yearning for warmer weather so I can host outdoor gatherings and party hard with my friends, but my overall feeling is absolute rage at the way disabled and immunocompromised people have been abandoned by the state and society in general. Millions of people will be hurt when the COVID-related public health emergency protections expire on May 11th. Under special rules enacted by Congress, states were barred from dropping people from Medicaid during the pandemic, but that safety net will disappear and eligible people might slip through the cracks again.
Alice is describing how during the pandemic, Congress included a “continuous enrollment” policy for Medicaid, the program that provides health insurance for some children, and adults with disabilities, who are pregnant, who are low income, or some combination. States received extra federal funds, so if someone became eligible for Medicaid in the last three years, they couldn’t kick people off the rolls. That expires on March 31, and the government estimates that up to 15 million Americans may lose their Medicaid coverage.
(Shoreline Piling – Blue Dot Sessions)
Alice was born with a form of muscular dystrophy, and when we spoke in 2020, she told about when she first enrolled in Medicaid. You could hear the BiPap machine she wears to help her breathe when we talked back then. She said enrolling in Medicaid was a rite of passage for her when she became an adult, that she did at the insistence of her father.
(end of Shoreline Piling – Blue Dot Sessions)
Alice: When I turned 18 he said, "Okay, you’re 18 now and you’re gonna apply for Medicaid." And I was like, "What!" I was like, what is this happening? My dad said, you know you’re now an adult, you are entitled to this and that you know just think about the years of the huge cost to our family. You know, I was a young, you know, know it all teenager and I was like, "Medicaid? Isn’t that, you know, for poor people?" And you know, it's like, yes, it is. And I realized, you know what it really means and that how vital these programs are because they really keep our community connected. You know they really help support those who have the least. And that allows me to live at home and live with personal assistance instead of an institution. But um, like many other programs, to be on Medicaid solely because of my personal needs uh, I'm not allowed to have over $2,000 in my bank account and there’s actually a cap on how much I can earn per month. So, all of these things have kept me from having, you know, 401ks, you know the usual things that, you know, people tell adults they need to have for like, as a nest egg for the future. I don’t have any of those things.
(Greylock – Blue Dot Sessions)
Anna: What’s the monthly cap on what you’re able to earn?
Alice: In California, I am on one that's um, the working disabled program, that allows me to earn up to two and a half times the poverty rate, so two and a half times the poverty rate I believe is in the mid-40,000s, I think? Last time I looked, I think it’s 40ish thousand.
(end of Greylock – Blue Dot Sessions)
Anna: Mmhm. How do you feel about that earning limit? Does it feel like a relief, that there’s only so much you can try to earn? Or does it feel like a cap on your ambition?
Alice: It is absolutely a cap on my ambition. I think of it as one of the clearest examples of systemic ableism. You know the fact that there’s a limit purely because the way our society is organized that if you need assistance to live every day uh, let's say to get out of bed, have people—people that work for you at your home to help you do the everyday activities of life, for those reasons alone to—to survive you are expected to have a tradeoff to live you know at poverty or near poverty. You know that, people don’t realize is that to be poor or close to poverty it takes a lot of work, I mean it’s just, it's basically a part-time job in terms of making sure you document everything because you’re constantly, as a disabled person asked to prove your—your disability all the time, just, you have to always re-confirm, "Yes, I do need these services," and yes, you have to repeat all these different things that you cannot do just to jump through the hoops to make sure that you are eligible.
Anna: Yeah, and it’s this mix of you having to show the government that you were both deserving of help and also dependent enough, like need help enough. So, it’s this combination of showing worthiness and also vulnerability.
Alice: Yeah, and these are often in conflict. So there’s always like, for me, like hyper vigilance about my bank balance, about my assets because no matter what happens in terms of, no amount of extra income is worth not being on Medicaid because basically Medicaid is a lifeline for me.
(Elmore Heights – Blue Dot Sessions)
Alice grew up near Indianapolis, the oldest of three sisters. Her parents immigrated to the United States from Hong Kong a few years before she was born. She was diagnosed with muscular dystrophy as a toddler.
(end of Elmore Heights – Blue Dot Sessions)
Alice: My disability world was completely separate from the Chinese-American community that I was part of, so we became involved in the muscular dystrophy organization, so we did you know various events uh, maybe once or twice a year, and you know that was a very white world. And um, I almost never saw anybody like myself there. And we also had a very small Chinese-American community that was um, it was centered around a church and um, yeah. That was my safe place. People that, you know talked like us, ate like us. My sisters and I were lucky that we did have friends to grow up with that were Chinese-American as well.
Anna: Mmhm. And how did your personal care work when you were a kid growing up in your house? Was it family members who helped take care of you?
Alice: Yes, that’s um, that’s basically it. You know, it started with mostly my parents doing all the care, especially as I got older and needed more help you know that they were always there and, you know then as my sisters got a little older you know they were involved as well. Like, you know it's really kind of made—was this glue—the fact that every member of my family helped me with my personal care. In a lot of ways, I was kind of a hub where we were all connected.
Anna: Did you enjoy high school?
Alice: Oh gosh! Well, do you want the truth?
Anna: Yes! (laughs)
Alice: (laughs) Do you want the truth? Okay, hang on. I am so glad you asked me this question because now I can just publicly call out my high school. I just, was so eager to leave that high school. Like I was one of the those kids who had senioritis like way before I was a senior. Like I knew life was going to be so much better once I got into college. You know I gotta tell you, you know I got in touch with my—my rage as a, at an early age, and it served me well, I will just say that.
Anna: I love that. (laughs) I love that. You can thank—you can thank your high school experience for tapping into your rage. (laughs) I wanna understand just so—so, I get what was—was um, the feeling at the time. Did you have an experience of—were people directly cruel to you and bullied you? Or was it more the feeling of just being invisible and not seen?
Alice: Uh-huh. You know it’s very ironic because I was invisible and yet so painfully visible at the same time. You know I was one of the few wheelchair users at that school, you know, so, my locker was a desk in the nurse’s office because all the lockers were inaccessible they just didn’t even, you know think about, oh! Maybe we shouldn’t segregate her this way. Uh, and then I think my bus, it had to drop me off to my high school about 30 or 40 minutes before school started because that was a bus that took other disabled students to another school. And um, I would get to school and it would be pitch dark and I would just sit alone and just wait for the students to arrive. Like that was my high school experience. I will say that I had a teacher that refused to um, advance me to the next level of a drama class I was taking so, you know I um, which crushed my dreams so, if you have time for this story I’ll tell you.
Anna: Yeah, I wanna hear it. I love the high school stories. (laughs)
Alice: I did not realize we were gonna go in this direction, but I’m here for this. You’re just giving me a gift. Um, the salty gift. Okay so, as a sophomore one of the things that I loved as an elective was drama. So, I took uh, Drama I, taught by Ms. Tudor. At the end of the year, I had a B and I signed up for Drama II for the next year and she called me after class and said um, I need you to speak to your guidance counselor, I’m like oh, okay. So, I go to my guidance counselor and she said, the teacher was not going to advance me to Drama II because she had concerns whether I can fulfill the requirements. And let me tell you the passing requirements. There was a session on pantomime. Pantomime! And because I’m a wheelchair user she just presumed I can’t do pantomime from a freaking chair? And I was like, are you sure? She said, yes. So, I went back to the teacher and I said—first I asked her to reconsider, she just shook her head and said, I’m sorry I don’t think so. You know I just, it was one of the few things that I enjoyed and she said I couldn’t continue this because of my disability. And she had no imagination or even willingness to be flexible and for an adult, you know especially an educator who supposedly, you know is supposed to bring up young people and get the best out of them, she drew the best rage out of me.
Anna: I’m curious—so you felt rage did you—did you, as a teenager, did you tell people what had happened and that had been withheld from you?
Alice: You know I told my friends and you know they all felt horrible but you know we didn’t like protest, we didn’t like create a ruckus. And you know, the 46-year-old me would have done some serious stuff. But you know at that time I think I was already so self-conscious and I, frankly because of the counselor and the teacher, I didn’t think anybody else in the administration honestly would have my back. I also didn’t really share that much with my parents because—and I regret that now but um, you know a lot of times, you know I—I think they were very, you know careful how they advocated for me. And I think that’s okay too just, you know in a lot of ways I placed the responsibility of advocating for myself and that’s you know, how I learned to be self-reliant and just–
(Wristwatch – Blue Dot Sessions)
Anna: How to make a ruckus.
Alice: Later on, yeah. Look at me now. Look at me now.
Coming up, Alice finally gets to go off to college, but the reality of attending was hard.
Alice: It was a real you know let down for me, I mean, you know I had dreams, I had ambitions, I had friends there but you know again, you know it’s about the long game. Because the real dream was to leave—to leave Indiana to be honest.
(end of Wristwatch – Blue Dot Sessions)
This is Death, Sex & Money from WNYC. I’m Anna Sale.
Alice Wong started college in 1992, two years after the Americans with Disabilities Act became law. She enrolled at Earlham College, her dream school, a Quaker liberal arts college about an hour and a half away from home, where Alice says only one dorm was accessible to her at the time.
Alice: I was the first wheelchair user ever. They had to renovate a bathroom just so I could use that bathroom. So, this was the one bathroom in my dorm, on campus that I could use.
Anna: This was the only bathroom on campus you could use?
Alice: You know, I was determined to attend this private school, because I was driven by the academics. So, it was a lot of stress and at the same time it was, you know, thrilling to be on my own.
Anna: When you went to Earlham, when you first left home and lived in that dorm, was that the first time you had personal care assistance who weren’t related to you?
Alice: Yes. Yes, it was.
Anna: So, you’re an 18-year-old woman and just what was—did anyone help you figure out how to communicate with them about how you wanted to be touched, treated, cared for—how did you learn about that?
Alice: Yeah, that was a real learning curve. And I think being able to direct my care with my family members was definitely helpful. I think, you know, when you rely on others for most activities of daily living, speaking for myself but I think um, other people in my situation would also—they might agree with me that you learn how to listen very well, you learn how to pick up non-verbal cues. You also learn how to really communicate in a way that’s effective. So, you really learn how to sense the situation and also adjust to it. So like, there were different people that came. Sometimes you know I would have somebody I’ve never met before and they have to help me use the bathroom. So, you know I gotta be you know comfortable with my body, comfortable with somebody touching my body who I just met for the first time. But you know, I've always tried to stress that I’m the expert. You know I’m there to tell you like this is the way I prefer to be lifted or XYZ, because being a bossy pants you know, it was not a problem for me to say, um, can you do it this way? But you just have to be super organized in your brain, you know? And also be like really clear.
Anna: Wait, when you say organized in your brain—what does that mean? What are the things that you’re having to make sure are sorted?
Alice: Yeah, so always anticipating what’s next. Anticipating what could go wrong. You know somebody—what if somebody drops me? What if somebody doesn’t want to do something the way I ask them to? You know all the different kinds of variables but also being mindful again like—how much time do I have left? You know, am I going to get all the stuff that I need help with done on time before they leave because they won’t be back for another 5 or 6 hours. So, there’s a constant internal evaluation of you know, getting my stuff together. You know, after a few months you know it was - it did become more difficult to get around on campus when it was snowy and icy. And I got sick and um, I actually ended up having respiratory failure and almost dying not even halfway into my first semester. So, um once that happened I actually had to take a year off school. So, I went back home, was completely sad when all my friends were living the campus life. You know, I had to be the grown up and decide, okay I’m going to stay at home, I’m gonna commute to Indianapolis and downtown, where there was Indiana University at Indianapolis campus. So this is um, the local commuter campus that a lot of you know, non-traditional just, you know working—people who already have—who were there for a second degree or a mid-life, you know, career change. This was as far different as you could get from Earlham College. And this was a total let down for me, you know? I had dreams, I had ambitions. And it was incredibly, you know, difficult at the beginning. Again, I’m so thankful for my parents because they drove me to class. I mean, I didn’t have an accessible car, you know they were there for me. And I actually ended up having a fantastic experience at Indiana University that really surprised me.
Anna: It strikes me Alice, it’s interesting that it was the campus that served non-traditional students that was the one that could imagine possibilities for you that people at your high school or at the private fancy liberal arts school could not.
Alice: Yeah. I feel like that was such a humbling thing because with all of my kind of assumptions and you know judgments, you know I had wonderful opportunities to learn and grow. You know, it really was a better situation, even though I didn’t have all of the bells and whistles that one would want as a young person—for all the, you know I didn’t go to parties, I didn’t do anything wild but that’s why I am the party animal that I am now.
(Slow Rollout – Blue Dot Sessions)
Alice finally left Indiana for San Francisco in 1997, to get her masters’ in medical sociology at the University of California, San Francisco. And being there was a lot of what she’d hoped for.
(end of Slow Rollout – Blue Dot Sessions)
Alice: It immediately felt like home because I saw like so many Asian-Americans, there was such a—it was such a relief. I was just so thrilled and of course the food like um, the culture, the weather, the diversity just all the things that are right at your footsteps, your doorstep. I think that was so exciting, and that was really the lifestyle you know I had wished for myself.
Anna: What did you do on the weekends? In that time of your life when you were just getting to know the city?
Alice: Yeah, I was just so lucky just exploring all the different neighborhoods, going to parks, going to like Golden Gate Park, I was actually walking distance from my campus to Golden Gate Park which is amazing. And you know I love taking public transit so, like public transit was accessible. That was thrilling, to be able to go to Berkeley and Oakland all by myself. That would’ve never happened—
Anna: Had you ever done that before? To like be able to travel around the city by yourself?
Alice: Never, never. Never ever. So, that was extremely, extremely thrilling and all the little things were just an adventure.
Anna: When you moved to San Francisco did your parents also move?
Alice: Well, funnily enough, at that time it was incredibly difficult finding and retaining workers, which really there was no ladder of, ways to advance, and there were very few benefits. So at that time it was, you know, so competitive for so many jobs that are just far better paying, that the plan was that I was going to, you know, stretch out on my own but my mom, she was there to help me through the adjustment period. You know once, I found a set of people. But she ended up staying with me and what was really funny is, my mom ended up having her own kind of renaissance because she went back to school when I was in school. She went to San Francisco uh, she first took classes through community college and then she went to San Francisco State University. So, my mom ended up getting a bachelor’s in social work.
(The Melt No Field – Blue Dot Sessions)
Anna: I love that—that she moved out to help you and what could from the outside—you know, just sort of when you hear that part of the story, you think like oh, maybe you felt hemmed in by having your mom there and maybe your mom felt some sense of obligation. But that both of you were able to find a real sense of freedom and expansion in this new life together is so cool.
Alice: It was her time after raising three kids and, being a mom just, it was her time. I think that’s really exciting to see.
Alice’s dad eventually moved to San Francisco to join them as well. And these days, while Alice’s parents still help with her care, she’s also thinking about their care as they get older.
(end of The Melt No Field – Blue Dot Sessions)
Alice: During this pandemic you know, and even before then I was planning ahead and going to, you know hire a new set of workers because I did have some healthcare workers, you know, throughout the years that would provide supplemental assistance because, you know, it shouldn’t be all on my parents but um, with this pandemic and not feeling safe, it’s definitely not the time right now. And I have this luxury of living with my parents who are my healthcare workers. You know the ironic thing is right around the time the pandemic sort of really started to emerge that um, we all did our advance directives. It was very just um, strange timing but also it’s a lot of adulting that you know I’m glad I did because you kind of just never know, you need to plan ahead.
Anna: Wait so, when—you just did your advance directive?
Alice: I did it around March. So yeah, it was just very kind of a funny sort of coincidence or convergence of events.
Anna: Yeah. So, you’re in your mid-40s. What prompted you to do your advance directive in March?
Alice: Well, you know my parents were uh, estate planning because they are both in their 70s and we really wanted to make sure that, you know their wishes are you know fully in a document and you know they get everything in order so that my sisters and I later on, you know down the line won't have to um, make some very difficult decisions. So, we had these conversations that, we’ve been meaning to do it for years but you know, it so difficult but yeah, parents are a bit stubborn and both of my parents were a bit kind of creeped out by it. But um, you know they kept—you know they—you know the—us as kids, adult kids we try to like encourage them that this is, you know—this is good, you know we can get through this.
Anna: Have you noticed your relationship with them change as you’re noticing them aging? That after a lifetime of them looking out for you, are you noticing some of their physical limitations in a way that is changing the way you all relate to each other?
Alice: Yeah, I will say that even though in my early life, you know I did rely on them for a lot, you know, just even at an early age we were all very interdependent. As the oldest child you know I did do, you know, I did help a lot you know. In different ways. I know I contributed to the family, that I was more than just somebody who required care. And I think—I think I—they also saw me that way as well. So, like when I was younger, I was really good with like reading directions and just—while we were on the road and I would just like you know—"Don’t forget to exit off this highway!" You know that was me–
Anna: Uh huh. Bossy pants, yeah. (laughs)
Alice: Yes, you know I would like—I would plan, like, to do all the research about like, where are we gonna stay, what are we gonna eat, what are we gonna do. No one appointed me but uh, I was self-appointed organizer in chief. And I’m proud of that and you know I think, um—my parents also kind of, they appreciate me as much as I appreciate them.
That was my conversation with Alice Wong in 2020. Now, in 2023, Alice told us she’s still recovering and getting used to her new ways of communicating, but she’s back writing, and still very active on social media.
Alice: I feel very fortunate that I can still write with relative ease with these blessed bony claws of mine. Being unable to speak heightened the need to be succinct when typing a response because people speak faster in conversations and I'm just trying to keep up. So this has made me a better writer, I think. This wasn't the first time that I almost died, but I have been filled with an urgency to create and share my story through my writing. Life is too damn short and I still have a lot I want to say, and I'm happy to share that this spring, I will be a columnist for Teen Vogue, where I will write about being disabled in an non-disabled world.
While my words can slice with the precision of a scalpel, I developed other ways to communicate with others. I created some rudimentary sign language to indicate the need for my lungs to be suctioned, or my body turned to my caregivers. My family and caregiving team have also become pretty good at reading my lips, which I still find amazing. When I am angry and frustrated, which happens often, I will bang things on my desk. And I still have my fantastic facial expressions, which will let people know how pissed off I am at them. One time a dentist was completely dismissive of me and he was only talking to my sister. And I will tell you, I threw daggers at him through my eyes and the profanities I mouthed. He got the message, even if he couldn't hear me.
He got the message, she said. Alice also had to advocate for herself at the end of her ICU stay last summer. Initially, the hospital pushed her to consider going to live in a nursing facility. Alice and her family did not want that, so a friend of Alice’s eventually started a GoFundMe to help pay for her ongoing care at home. They’ve raised over 300 thousand dollars so far.
(Four Count Light Box – Blue Dot Sessions)
Alice Wong: It currently costs $600 a day for the private caregivers that I have right now in addition to other paid caregivers through Medicaid. The discharge planner's comments reaffirmed my commitment as a disability justice activist because no one should live in cages and everyone deserves to have their needs met and cared for in the community.
Good care and caregiving requires a radical orientation and transformation of how we value people. Good care values the labor of the caregiving workforce. Good care means we as a society understand that it is not a weakness to need help.
(end of Four Count Light Box – Blue Dot Sessions)
(end theme for Death, Sex & Money)
That was Alice Wong. You can find her memoir, Year of the Tiger: An Activist's Life, wherever you get your books. We’ve also linked to some of Alice’s more recent essays in our show notes.
Death, Sex & Money is a listener-supported production of WNYC Studios in New York. This episode was produced by Afi Yellow-Duke. The rest of our team is Liliana Maria Percy Ruiz, Zoe Azulay, Lindsay Foster Thomas, and Andrew Dunn.
Our intern is Baiz Hoen.
The Reverend John Delore and Steve Lewis wrote our theme music.
I’m on Instagram @annasalepics, that’s P-I-C-S. The show is @deathsexmoney on Twitter, Facebook, and Instagram.
And thanks to Shelly Wade in Anchorage, Alaska, who is a sustaining member of Death, Sex & Money. Join Shelly and support what we do here by going to deathsexmoney.org/donate.
Back in 2020, I also asked Alice how her teenage self would have reacted if she could have brought her essay collection to school.
Alice: I would have probably shoved that book in front of Ms. Tudor’s face and say, "Hey! Look at these badass disabled people doing all kinds of things. Don’t play me into thinking I can’t do freaking pantomime!" You know? I have the receipts. And then I would have wheeled on out of there.
I’m Anna Sale, and this is Death, Sex & Money from WNYC.
(end of end theme for Death, Sex & Money)