Disabled people and their attendants are both vulnerable and resilient. Our relationships and well-being are linked. Alice Wong, Ollibean Change Leader

Parenting and Caregiving

Finding the balance between parenting and caregiving children with disabilities can be challenging — there’s a fine line between hovering and being there to assist when needed. The dynamics of the caregiving/care receiving relationship are complex. They are constantly changing as our children grow up; what’s nurturing and helpful for a five year old doesn’t fly at ten, what was okay at ten, doesn’t work at eleven, and so on and so on.

The media typically presents the perspective of caregivers, particularly parent caregivers, but rarely provides the perspective of the person with a disability who uses personal assistance. I was especially interested in listening to a podcast by a disabled person that included stories about both caregiving and care receiving.

Enter “Caring Relationships: Negotiating Meaning and Maintaining Dignity” featuring disability rights activist, Alice Wong. This podcast takes a look at the relationships between disabled people who use personal assistance and the folks that assist them.

“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

We listened to and read (thanks to the transcript) Choreography of Care as a family and talked about our caregiving/care receiving relationships.  My son said learning how to manage an assistant while still living at home is important and would help with managing similar relationships in school.

Alice Wong is a tireless activist, founder of the incredible  Disability Visibility  Project (Ollibean is proud media partner # 81), a  Staff Research Associate at the Department of Social and Behavioral Sciences at UCSF, originator of #CrippingtheMighty, one of the minds behind #CriptheVote, and served as a Presidential appointee to the National Council on Disability. She is most definitely a Change Leader, making the world a better, more accessible and equitable place.

“Our labor has value. We are stronger together.”  Alice Wong

The whole show is just so real and so interesting. It’s just beautifully done. Listen to the podcast and talk about the dynamics in your family.

 

Transcript Alice Wong, Making Contact Radio “Choreography of Care”

Text transcript  

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.

Listen to the full episode here

Caring Relationships: Negotiating Meaning and Maintaining Dignity

Check out how you can get involved in the Disability Visibility Project .