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Photo of Alice Wong, Stephanie Guyer-Stevens Credit: Alice Wong, Stephanie Guyer-Stevens
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. During this week’s anniversary of the Americans with Disabilities Act, we’ll revisit the dynamic and complex relationship of care receiving and giving.
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Anita Johnson: This is Making Contact and I’m Anita Johnson. Did you know that July is Disability Pride Month, which commemorates the July 26, 1990, anniversary of the Americans with Disabilities Act? Considered to be one of the most important civil rights law since the 1960s. In this edition of Making Contact, we’ll revisit the story of disabled persons embracing their disabilities as integral parts of who they are and the dynamic and complex relationship of care receiving and giving for disabled persons.
Here’s Laura Fylnn with more.
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, clean, I’d clean the house, get everything done, get her bathed, lay out her clothes for the day. This is what you can wear, this. And I’d drive her to do whatever it was she needed to do.
Laura Fylnn: 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, so that’s how I, 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 Fylnn: 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, uh, dignity. And it makes me feel good to know that I’m helping someone have that.
Laura Fylnn: 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 to. A 2015 report by U.C. 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?
In this next story from the San Francisco Bay Area, Wong searches for answers.
Alice Wong: Hey, Bob, I’m ready to get up. Not too bad. Okay. Can you turn off the oxygen? Okay. I don’t want to get up. But here I am, in bed, needing to get up and get in my wheelchair. For the minute I wake up, I’m connected to people. Can’t get away from it, even if I wanted to.
Kenzie Roby is an artist in San Francisco who has multiple people that work for him. Like me, he’s in bed when his attendant arrives.
Kenzie Roby: I have no use of my legs, so I’m very dependent on care providers. So when someone comes in in the morning, the first thing they need to do, wash their hands, 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. Kenzie says it’s different each time.
He trains a new attendant.
Kenzie Roby: And I’ve had people that, that are able to be directed and able to be taught the procedure within 30 minutes or 2 hours and I’ve had other people who feel like, Well, why are you picking on me? Why do I have to change my gloves? You’re wasting, 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 sort of gets the day started by making the coffee, starting the breakfast.
Um, and I sleep at night using a BiPAP machine. A BiPAP machine? So I get up and sort of 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, um, 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, um, zip things. And then, like, tie my hair back if I want. And he’s really good natured about it the way, you know, he makes it nice. Hey. Hey. I love your hair.
Alice Wong: Another Berkeley resident, Alana Terrio, 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 Terrio: 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, um, 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 Terrio: 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: Like seriously, people are like, where do you get such skills? And I’m like, well, I, you know what it takes me to get dressed every day? Like, that is a production. So of course I can manage, like, a show.
You know, cause like, I can, I produce an event every day. When I’m dressed and, you know, fed and comfortable. It’s like choreography, right? Yeah, oh my god.
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.
Alice Wong: 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.
Thanks, Mom. You’re welcome. For Alana, it’s all about teamwork.
Alana Terrio: 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, um, 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 Terrio: Once a year I host, um, Attendant Appreciation Dinner, where we go out, I think. And 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 assistance, 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, um, 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, like I really need you to be on time because I’m going to pee my pants unless you’re here on time. You know, like just being really frank and up front with people, uh, is really important and being honest, but also like showing your appreciation and, Um, yeah, it’s, it’s a hard one to navigate.
Yeah. Yeah.
Alice Wong: Navigating these boundaries can be tricky, especially if your tenant is also your family member. Ingrid describes the understanding she has, but her husband can.
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.
Um, and I think it’s important for the health of the relationship because, um, at some point, Ken is going to need help from me more than he does now. And 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: You know, one of my attendants, um, unfortunately, she recently, um, broke her wrist. And, um, 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. Right? And so, um, you know, it’s, it’s just, you know, how do we meet our needs collectively?
You know, and it’s really cool because these nuances of movement that she didn’t realize I was contributing to the routine out. She’s doing one handed. She’s like seeing things. Oh yeah. Actually like Patty’s supporting her own balance.
Alice Wong: So for Patti, 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. For more UN videos visit www. un. org
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, to learn and to live my values, to tie together. What, what I care about, you know, to bring the values that I put out into the world to, to really feel that in my own body and in my own home, um, 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 off my house for a bit? Dad, 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 Biggie Contacts Storytelling Fellowship, I’m Alice Wong.
Laura Fylnn: To find out more about Community Storytelling Fellow Alice Wong’s story, visit radioproject. org. After the break, we meet Alta Mae Stevens. She has spent most of her life caring for others. We’ll be right back.
Monica Lopez: For more information about this or past shows or to make a difference by supporting our work, go to radio project.org. You can also like us on Facebook or follow us on Twitter. Our handle is making underscore contact.
Laura Fylnn: Welcome back. Most often, family members are the ones that step up and provide care when a parent or loved one needs it. According to the Family Care Alliance, 78 percent of care beneficiaries receive assistance from a family member, friend, or neighbor. Alta Mae Stevens is 87 years old. From the moment she married, she’s been caring for one person or another.
Her daughter, Stephanie Guyer Stevens, talks to her about what a lifetime of caregiving has meant to her.
Stephanie Guyer Stevens: My mother was born in 1928, and her older brother, Harold, was born in 1924. She’s been taking care of Harold for 35 years. That’s 12 years longer than she was married to my dad. For years, people would reason with my mom that she should put Uncle Harold in some kind of facility, you know, where he’d get full time care and she could pursue a job or even get married again.
But she could never imagine doing that to her parents. Brother, there was never any question about who was responsible for Uncle Harold. She was. According to my mom, she and my Uncle Harold’s childhood was so unusual, and their bond was so close, she tells me Harold always unswervingly had her back, no matter what.
But now, other health issues have cropped up. After he collapsed on top of my mom while they were walking home one day, it was decided Well, she decided that he needed to move to a nursing home. She couldn’t take care of him anymore. So now, he’s living at the JML Care Center. He turned 91 years old there in October.
Alta Mae Stevens: It was Sunday night, and um, he called out to me. My heart always sank when Harold 3 o’clock in the morning. So, he called out to me. And he was standing in the bathroom, and he’d made a, poor fellow, he’d made a mess all over the bathroom. And, um, so I tried to clean him, clean him up as best I could. And then I wanted to put him in a clean pair of pajamas, so he had a walker.
And I said, well, why don’t you take the walker and walk her back into the, into the bedroom, and I’ll help you get into your clean pajamas. I got out his, a pair of bottoms for him. And I knelt down and I tried to lift up his foot to put into the pajamas. And it was, it was like it was made of stone. I couldn’t move it.
He was absolutely rigid. And I, I, I was appalled. I couldn’t believe it. And I’m a very strong person, and I figured I could lift that foot. I couldn’t lift his foot. So while we were wrestling, we all went over. Harold, me, and the walker all went over.
Stephanie Guyer Stevens: And did you ever find out what caused those
Alta Mae Stevens: Okay, now we’ll get to the next point. So he went to the hospital, and that’s the time when they had him in the, um, They never even found a room for him in the ER. He sat in the hall. He lay in the hall. And, um, they, when they discharged him, they discharged him with the diagnosis, failure to thrive, which means they couldn’t find anything wrong with him.
Okay? So, that wasn’t wrong already. So, um, we took him to Dr. Crago and I said, what makes, what, what has made these attacks? Dr. Crago said, you can’t deal with it. That was fine. I’m glad he said that. You can’t deal with this and he should go to the nursing home. At first I felt, uh, slighted. I thought, oh God, he doesn’t trust me.
I’ve been taking care of Harold for 35 years now. Come on folks. I wasn’t going to be, I mean, if, if it was time for Harold to go, it was time for Harold to go.
Stephanie Guyer Stevens: Right, but
Alta Mae Stevens: it wasn’t just my lack of good care.
Stephanie Guyer Stevens and her mother: How often are you coming up here though? How often are you well? Um, I’ve during the summer. I was walking both ways three times a week and I discovered that I was I was doing too much So now I mean you were getting too tired. Oh, yeah, I was I was more exhausted than I realized and so once a week To walk up here
And that’s, that’s enough for me. But you know what persuaded him to stay? What? The fact that I finally dragged out the last argument that I really didn’t want to have to give. Which was? I have atrial fibrillation and I can’t take care of you anymore because I might die. Oh. As soon as I said that, he said, oh yeah, that’s right.
Which is the truth and yet I, I don’t know. Why? It sort of feels like a cop out. A cop out? That I’m using my, my health as a condition for not taking care of Harold. But does it really feel like a cop out? Well, a lot of it does. And then I think, no, it’s true. I got to the point where I was really scared because I didn’t know what I was dealing with.
What’s that beeping noise? Do you know? And this is another, uh, calendar that came that you can use. Carol Knight goes through the calendar. Oh, that’s the Wildlife Federation. Carol does the calendar every day that I’m here. He writes what the weather’s like and what the weather was like yesterday.
So you, there’s no room to talk, uh, talk about what the weather is like today, but you can talk about yesterday’s weather, which was rainy. So that goes there. So every time I come, we do that. It’s really important to maintain his calendar. Why? Well, just cause. It gives you a sense of, gives him a sense of knowing, being up with the world, I think.
Maybe I’m wrong, but And also this calendar with all the pictures on it. It helps a lot. Harold has had, Harold has been in love almost continuously ever since he was grown up. Which I think is really nice. He’s always in love with somebody. Yeah, how about now? Fetching for somebody else. Then one time he came back from JML, uh, daycare, and he said there was a lady who really, truly wanted to marry me.
And I told her I was sorry, but I was too old for her. Isn’t that right? Is that true, Uncle Harvey? Yes. Well, it looks like mom’s already going out the door, so good night, Uncle Harold. Okay, we’ll see you. We’ll see you tomorrow. We’ll see you tomorrow. Yeah, okay, good. Okay, bye bye. Bye. Bye bye. Thanks for coming.
Stephanie Guyer Stevens and her mother: Yeah, see you soon. Hi. Okay, you want to take a taxi or do you want to It’s up to you. Do you want to take a taxi? No, I can walk. You were saying you wanted to take a taxi. No, I can walk. You want to walk. Yeah. Okay.
Alta Mae Stevens: Hi, how are you? Hi, how are you? Are you still in daycare? Mm hmm. Oh, good girl. How’s he doing? Great. Thank you, dear.
Stephanie Guyer Stevens: But how did you feel? Oh. Like at the time when it was, when you were finally bringing Uncle Harold to the nursing home.
Alta Mae Stevens: Well, when I took him to the nursing home, that was fine. I, I felt, I felt relieved. But I got home and as I say, I started, first thing I did was clean out Harold’s room because he, you saw his room, didn’t you?
It was, yeah, it was a mess. So, and I bundled all that stuff into a big plastic bag and took it up to the daycare so that they could hand it out to people again. But after it was all tidied up and neatened up and I thought about how I could put another bed in there even. And I was having all these bright ideas and then I realized the finality of the whole thing got to me.
And as you say, this strange situation in which he can’t use any of his things and yet he’s not, not dead. It’s very strange. Yeah. The whole thing sort of impacted on me and it, you know, my friends kept on saying, Oh geez, now you can go out for lunch, now you, you know, you can do all these wonderful things.
And I said, yeah, that’s right. I can do all these wonderful things. All I know is that I lost my appetite. And I am somebody who never lost her appetite. So, I knew something was wrong.
So maybe you missed him. I missed Harold as a person. No doubt about it. But I also missed the regularity that was enforced on our
lives, on my life. And to think that I had the responsibility from then on for my own life was terrifying, I think. What am I going to do with all those hours?
Now I’m old, I can sort of control my life better. And now there are fewer choices. I, I firmly believe that. One thing that helped me was the fact that I didn’t have all that many choices when living with Uncle Harold. I knew what was, like, what I was going to do. I’m dwelling far more in the microcosm.
What do you mean? Well, my little world is so small. It’s the apartment, it’s the porch of the apartment in the summertime, and it’s, you know, using the binoculars to spot out the butterflies. that are landing, landing on the Buddleja. And just that little plot of garden, thinking about the various things that are in it and what’s happening to them.
But the best part of being old is you can sum up, bring up those memories and lay them away in a box and close the lid. And then they’ll come, they’ll, it’ll pop open again. And you’ll have the same memories. But, by that time, you know, you’re so old. You know, it’s okay. These days, my mom has started to settle into living alone.
Stephanie Guyer Stevens: She tells me her life is more in the microcosm. And what she means is, she’s watching the birds at the bird feeder. She searches for butterflies in the summer. She works in her garden. Her close friends have become closer. She needs them more now. They’re there for each other. Having Harold gone makes her remember so much more about her childhood, and that makes her miss him even more.
But the memories don’t go away. They’re there for her when she next needs them. For Making Contact, I’m Stephanie Guyer Stevens in Falmouth, Massachusetts.
Anita Johnson: And that’s it for this edition of Making Contact. I’m Anita Johnson. Thanks for listening.
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