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.
On this edition of Making Contact, which features a segment by our Community Storytelling Fellow Alice Wong, we’ll explore the dynamic and complex relationship of care receiving and giving. (Alice’s story transcript below)
- Camille Christian, home care provider and SEIU member
- Brenda Jackson, home care provider and SEIU member
- Patty Berne, co-founder and director, Sins Invalid
- Jessica Lehman, executive director, San Francisco Senior and Disability Action
- Kenzi Robi, president, San Francisco IHSS (In Home Supportive Services) Public Authority Governing Body
- Rachel Stewart, queer disabled woman passionate about disability and employment issues
- Alana Theriault, disability benefits counselor in Berkeley, California
- Ingrid Tischer, director of development, Disability Rights Education & Defense Fund (DREDF)
- Alta Mae Stevens, in-home caregiver
- Host: Laura Flynn
- Contributing Producers: Alice Wong and Stephanie Guyer-Stevens
- Photo Credits: Alice Wong, Stephanie Guyer-Stevens
- Music Credit: Dexter Britain: The Time To Run (Finale), Gillicuddy: Adventure, Darling, Steve Combs: March, Jason Shaw: Running Waters, Jared C. Balogh: BRICK BY BRICK DAY BY DAY, Jared C. Balogh: INCREMENTS TOWARDS SERENITY, Nheap: Crossings, Cherly KaCherly: The Hungry Garden, Trio Metrik: Vogelperspektive, Kevin MacLeod: Faster Does It
Segments excerpted from full show above
Choreography of Care
Making Contact’s 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 of California, Wong searches for answers. (see Alice’s story transcript below)
A Lifetime of Caregiving: Mom and Uncle Harold
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 Caregiver 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.
- UCSF: UCSF Study Projects Need for 2.5M More Long-Term Care Workers by 2030
- SEIU: Longterm Care Workers
- Disability Rights Education & Defense Fund
- Disability Visibility Project
- Hand in Hand: The Domestic Employers Network
- National Disability Leadership Alliance
- Senior and Disability Action
- Sins Invalid
- San Francisco In Home Supportive Services Public Authority
- Family Caregiver Alliance
TRANSCRIPT (thanks Alice!)
Alice Wong, Making Contact Radio
“Choreography of Care”
Alice: yawn [sounds of oxygen machine] Hey mom, I’m ready to get up.
Alice’s mom: [in Chinese] Did you sleep well?
Alice: Not too bad.
Alice’s mom: Ok.
Alice: Can you turn off the oxygen and the hospital bed?
[sounds of beeping machines]
Alice: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 am 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: I have no use of my legs, so I am very dependent on my care providers. So 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: 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: And I’ve had people 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 are wasting material.” And I have to tell them that the gloves are disposable, I’m not.
Alice: Some people have spouses and family members as their attendants whether they’re paid or unpaid. Ingrid Tischer lives in Berkeley with her husband. Here’s their typical morning:
Ingrid: 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.
Alice: A Bi-Pap machine helps a person breathe.
Ingrid: 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 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…the way, you know, he makes it nice.
[sounds of Alice meeting up with Alana]
Alice: Another Berkeley resident, Alana Theriault, has been living independently for 34 years. She employs 6 attendants and extra back-up workers for shifts throughout the week. They go where she goes, including the home and out in the community.
Alana: 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 of the house, make dinner, and they leave at 6:00 pm. And at that point, I have a little downtime which is nice.
Alice: Having privacy can be hard when you need assistance often.
Alana: 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: Anyone who uses personal assistance is part director, choreographer, and actor. Patty Berne is a director of Sins Invalid, a performing arts group in Berkeley. She compares her work to how she gets her needs met:
Patty: Like, seriously, people are like, “Where do you get such skills?” I’m like, “Well, do you know what it take me to get dressed every day?” Like, that is a production, so of course I can manage like, a show, you know? Cuz, like, I produce an event everyday when I’m dressed and fed and comfortable.
Alice: It’s a choreography, right?
Patty: Yeah! Oh my god, yes.
Alice: 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.
[sounds of Alice talking to her mom]
One pivotal scene in my daily drama is how I gotta have my coffee every afternoon when working from home.
[sounds coffee maker grinding]
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 it must be satisfied. For Alana, it’s all about teamwork:
Alana: I try to foster relationships between the workers. It’s nice because usually I have 2-3 days of training and then maybe 1 or 2 attendants involved in that training, so right off the bat, they meet each other. That’ll encourage them to say, “Huh, I don’t know, maybe we should call so-and-so, 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 on email.
Alice: There are lots of ways disabled people express thanks to their attendants. Showing gratitude can go a long way.
Alana: Once a year I host an 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: 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: I’m still learning and I think that, like you said, it’s a very fine line. It’s also letting people know when the line has been crossed. It’s like, “Okay, I really need you to be on time because I’m going to pee in my pants unless you’re here on time.” Just being really frank and upfront with people is really important and being honest but also showing your appreciation. Yeah…it’s a hard one to navigate.
Alice: Navigating these boundaries can be tricky, especially if your attendant is also a 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 that 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: 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, unfortunately she recently broke her wrist and rather than be 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? So it’s just…how do we meet our needs collectively? It’s really cool ‘cuz these nuances of the [disability justice] movement that she didn’t realize I was contributing to the routine now that she’s doing it one-handed, she’s like seeing now, “Oh yeah, that’s how Patty supports her own balance.”
Alice: 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: What happens in my home is you know just a little piece of that big picture that I’m talking about and committed my life to. And it just felt like the best example of the personal as political, and 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: Hey mom? I’m ready to go to bed now.
Alice’s mom: [in Mandarin] Ok, you ought to sleep now, it’s so late.
Alice: Can you turn on the hospital bed?
Alice’s mom: [in Mandarin] The bed? Ok.
[sounds of the air mattress turning on]
Alice: Can you turn on the oxygen please?
Alice: 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 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.