DVP Interview: Kenzi Robi and Alice Wong

On November 5, 2015, Alice Wong interviewed her friend Kenzi Robi at StoryCorps San Francisco for the Disability Visibility Project. Below are some condensed and edited excerpts from their conversation.

On using personal assistance for activities of daily living and what it takes to “get out the door”

Kenzi: First of all I’m paraplegic. I was shot in my neck 23 years ago. I have minimal use of my arms. I can’t grab anything. I have no use of my legs. 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. First of all because anything can happen. Thank God most of the time I am because my condition, I’m usually constipated. I don’t know if this is too graphic.

Alice: No, not. Let’s talk about poop. Poop is important. Right?

Kenzi: All right. It is important. For me a lot of times I’m constipated, so it’s like did I go? Okay, thank God I didn’t go on myself. Then now they got to get me up only to mole chair and go through this bowel regimen that I have to do every other day. A lot of times it’s literally hit or miss. If I go and come out, good. If I don’t not so bad. At least I win. But the person has to clean that up. That’s a lot to ask a person to do for $12.50.

Alice: An hour.

Kenzi: Yeah, an hour.

Alice: What else is involved let’s say your morning routine? What does it take for you to get out the door?

Kenzi: Oh yeah. That takes … If I don’t have to do my bowel regimen then I can get out the door in an hour and half maybe. Because I got to get cleaned up and it takes a while for me to get dressed and everything. Then I got to just be sure I got all my mags and I can’t just get up and just go like the average able bodied person. I have to do the catheterization. I have to do that four times a day. That takes 30 minutes, one hour.

Alice: What’s involved in that? A lot of people who do not understand what [catheterization is].

Kenzi: Basically what it is that I have to have someone … He uses close to sterile technique as possible inserting 18 inch catheter inside my penis into my bladder to empty my bladder. I have to do that four times a day at least. That’s assuming that I don’t drink too much and I have to go again, I have to go early which I try to avoid.

Alice: Talk about intimate work.

Kenzi: Talk about intimate work and if someone hasn’t done that before then I have to be very careful explaining that to the first medical procedure and the importance of maintaining the sterile field or the clean field which is what I use, a combination of both.

Alice: [with that kind of] intimacy, a lot of trust is involved.

Kenzi: Most definitely…I have to watch people. I have to watch people because there has been times when I’ve had had a nurse in the hospitals, I saw her contaminate the catheter and I said, “You can’t insert in me because the catheter is contaminated. She argued me down. She said how she was working for 25 years and she hadn’t made a mistake once. I thought, “You haven’t made a mistake in 25 years? You about to do right now.” I have to watch people and if someone who’s been working in a field of nursing for 25 years and think that they can’t make a mistake and surely really someone who’s been doing something for five days or five months or six months is going to be more prone to make a mistake.

Basically I have to always watch people. That issue of trust kind of like gets in the way sometimes because they mistake me watching them for distrust. It’s not that I don’t trust them, it’s just that I want to be sure that they don’t make a mistake. Those are the people I need. I need the people who know and realize they are going to make a mistake. They are human. I don’t want people working for me who act like they aren’t following up.

Alice: Yeah. That’s pretty scary when they think …

Kenzi: It’s very dangerous.

Alice: “Don’t worry about it. I know what I’m doing.”

Kenzi: Right. Waving the catheter around and stuff and scratching their hair, “I’m good.”

Alice: When somebody … Before they pick me up and they say, “Don’t worry. I know what I’m doing.” I get so scared…That’s where I feel the vulnerability. We are explicitly putting our lives in their hands.

On adjusting to living as a disabled person after his injury

Alice: What was the whole transition like for you from a non-disabled person to person who became disabled…what was that journey like in terms of adjusting to your new identity?

Kenzi: It was difficult. I had to deal with suicide attempts. Thank God I wasn’t successful, but I realized that everything happens for a reason and the things are not so bad. Once you calm down and pay attention … Patience was one of the second things that I learned after getting disabled. I think that one of the most important things is patience. I’m able to look around and appreciate life way more than I ever could have before.

Alice: If I may ask about your suicide, what made you think about that life is not worth living?

Kenzi: Well, I was very athletic. I actually played football and everything. I went from going a hundred miles per hour to two miles per hour. I mentally was not able to accept the loss. My son was actually born three months prior to me being disabled and he was born premature. I could have wanted to be there for him, but I could not be there for him because it was a new experience to me. I didn’t even know how to take care of myself let alone a newborn baby boy. It was a lot of, a great deal of stress for me. This was the year where previously my brother had got shot and a friend of mine had got shot that same year. There was a lot of pain there.

Alice: How did you get through it?

Kenzi: I’m going to be honest and say God. My religion is what got me through it. I was able to understand the road that I was going when I got shot because I was drinking, I was hanging out on the streets and I wasn’t doing what I was supposed to do. I realized that I started off on a good path and I ended up going on a wrong path. Once I realized that I realized that God is good. This world has evil people in it. That means there are god people. If there is dark, then there is light. I realized that I need to have a better relationship with God and to understand what it is that he wants for me to do. I’m still not 100% clear on that, but all I know is that I stick with him and no matter what I try to do the right thing.

Alice: I imagine for a lot of people become disabled that one of the things that… Must be frustrating, depressing, is a loss of control. In a lot of ways I think one thing that I learned is that a person with a disability is like, there is no such thing as control.

Kenzi: Especially when you see able-bodied people. Able-bodied people are supposed to be perfect by they still fall flat on their face. It kind of puts you on a perspective that life really … You really don’t have control over much in your life.

Alice: Yeah, and I think what we do have control of we take care of what we can and then a lot of that is just not in our hands.

Kenzi Robi

Kenzi Robi is the President of the San Francisco IHSS (In Home Supportive Services) Public Authority Governing Body. From the About section of the Public Authority’s website:

Kenzi Robi was paralyzed from the neck down when he was 19 years old and spent a year at Laguna Honda Hospital. An artist all his life, he taught himself how to paint again by using his teeth. As part of this process, he studied Graphic Arts at City College. He has a son, Kenzi Jr., now a young adult. Kenzi has spoken on behalf of IHSS and people with disabilities at Capitol Action Day in Sacramento. He now works with other people with disabilities as a Peer Mentor. He notes that he’s very happy to be able “to help others appreciate and improve their lives, those people who were and are in my shoes.” In late 2010, a film about Kenzi won first prize in the National Disability Institute’s “Economic Empowerment—Defining the New American Dream” video contest. He currently serves as the PA Governing Body president.

For more, check out Kenzi Robi Art on Facebook: https://www.facebook.com/Kenzi-Robi-Art-153225914789179/

Alice Wong

For more: http://disabilityvisibilityproject.com/about/

Twitter: @SFdirewolf