DVP Interview: Shannon Des Roches Rosa and Liz Henry

Shannon Des Roches Rosa interviewed her longtime friend Liz Henry on April 11th, 2015 for the Disability Visibility Project at StoryCorps San Francisco. Below are condensed excerpts from their conversation.

On becoming disabled

Shannon: So, let’s switch gears a little bit and just, also noting that this is for partially, for the Disability Visibility Project, so I was wondering if you could tell me about your disability.

Liz: Sure. I have the perspective of becoming disabled as an adult.

Shannon: Mm-hm.

Liz: Which I think you know, makes a really big difference in disability communities.

Shannon: Mm-hm.

Liz: Just how you view everything, and how we view each other and different ways of being an ally.

Shannon: Mm-hm.

Liz: So, I guess around ’93 or so, maybe a bit before. I had some difficulties, but I really had like a mobility difficulty. Lost my job, I couldn’t use my leg, I just had some severe pain and difficulty walking. And ended up, this is a good story of how I got my first wheelchair. I was at the, in San Jose so I had moved to the Bay Area trying to move to San Francisco and I ended up in San Jose, Oakland and then San Jose. And I couldn’t figure out how you get a wheelchair. I couldn’t get around. I couldn’t walk very well even around the house.

Shannon: Mm-hm.

Liz: And I was just completely at sea. At that time, I was somewhat estranged from my family, so I didn’t have a lot of support or contact with people. Who could give me any adult advice, I think. So I’m around 21 or 22, I’m in this hospital having gone through the ER and free intake, and sort of the county welfare hospital, situation.

Shannon: Okay.

Liz: And them saying that without a diagnosis they couldn’t hook me up with a wheelchair. And they wanted to refer me to neurology, but couldn’t do it for nine months, and all kinds of strange, you know stuff.

Shannon: Meanwhile you couldn’t walk.

Liz: Meanwhile I couldn’t walk. [CROSSTALK]

Shannon: Yeah.

Liz: I couldn’t manage the practicalities of my life, and I didn’t know what was going to happen to me. The social worker, whose office I ended up crying in, at some point just went, “You know, nothing is stopping you, I would never suggest this, nothing is stopping you from just leaving the hospital in the chair you’re in right now.” [LAUGH]

Shannon: Really?

Liz: So, I stole the hospital wheelchair. I stopped crying and went, “You’re right. My God, you’re a genius,” and I just rolled out of the hospital, and got someone to pick me up and went home. So with that wheelchair, a horrible Everest and Jennings, you know, 90-pound clunker.

Shannon: Yeah.

Transitioning to life as a wheelchair user and connecting to the disability community

Liz: I did manage to sign up for some classes at De Anza College. I get some help from my parents. I think I was on unemployment at the time. And then at De Anza College, I was taking some Unix system admin classes and things like that.

At De Anza College I found the Disabled Students Union, and I did not know how lucky I was. Because that was some hardcore disability, Bay Area disability activist people that, I don’t remember any of their names, but I now know, with this perspective of now, I know that they must have been hooked in and they had been around the block. And they were great to me, and I was just starving for any, any connection with any images I would get. Issues of New Mobility magazine, which was basically the silliest thing ever, like full of ads.

Shannon: Okay.

Liz: And I was just like, so happy to see the ads with other people in wheelchairs in them. A guy who was a wheelchair basketball player at De Anza gave me his old Quickie 2 which is my red wheelchair that was, I loved so much and that changed my life for, so much for the better. I had a ultra light weight amazing wheelchair. It looked cool.

There I was with my little mohawk, like, toddling around the bay area. It was great and the other thing I would say about that time in the 90s is that I had deep connections with like, the Radical Faerie communities in San Francisco and around the Bay Area and I think, was also fortunate in many ways. So, of course, the queer communities of San Francisco had a lot of experience with people having health difficulties because everyone was still dying.

Shannon: Mm-hm, yeah.

Liz: And that, when I moved here, it was still the tail end of, like, really medications were not very effective and so a lot of people we dying and people were organized to do care for each other in the community and what that kind of meant for me is that I had a model of social approaches to illness, disability, and care, and interdependence that was a positive model and not a, you’re helpless and should be taken care of model but a very inclusive attitude. So I could show up in my wheelchair and I would be included in things and people were very thoughtful.

Shannon: Oh, that’ s great.

Even if stuff wasn’t 100% accessible. People didn’t freak out, and there were other disabled people around.

On changes in mobility and disability

Liz: Now I have a different perspective. I did, I was walking better and better. I got rid of the wheelchair in 98, maybe and would walk with a cane and had jobs where I had to be fairly active, doing IT, and I was at the University of Chicago, doing IT and doing things like pulling cable through the ceiling.

So I became more and more active, walked better and better. I got pregnant, a few times, resulting in my son, who’s now 15…So from about 2000 to 2005, I would say, I was pretty stealth. Like, sometimes I would turn up on crutches. I couldn’t really go around saying I was disabled anymore.

Shannon: Mm-hm and that’s when I met you.

Liz: But I still felt those connections and I would sometimes talk about it or I’d end up talking, something that means that, in a party, I would go lurk at the edge of the room with somebody who’s 80, because I figure they’re the most interesting person to talk to and nobody else is talking to them and, you know, I feel more solidarity with them in some way. Like that is who I would end up next to on the bus or whatever… I felt like I had sort of, the problems of passing, if you know what I mean.

Shannon: Got it, yes I do.

Liz: 2005 I ended up re-using wheelchair again. And I thought it may be temporary or it may not. Turns out it has not been temporary. I’ve had some periods of walking a little better or being more active or being able to kayak or, even, like, I tried riding a bike a little bit. I ended up [COUGH] with difficulties in both ankles. Is this too much detail?

Shannon: No.

Liz: So I ended up three years ago getting much worse, having to go from manual wheelchair use to scooter. I can still use the manual chair sometimes, but I can’t really sustain it, I can’t really get around. I can’t drive anymore. My ankles aren’t doing it. So I am now in San Francisco proper, depend on public transit and, of course cabs.

On having a cool scooter and public interactions

Liz: [LAUGH] And I have my lovely scooter. It’s tiny and folds up and looks slightly unusual, so people stop me constantly on the street and talk to me about my equipment…Like, everyday.

Shannon: I bet.

Liz: I can’t leave the house without having at least one conversation about my scooter and in a, usually in a positive way. It’s a little wearing, but I feel it, that it’s a daily activism. Like, people are asking for themselves or for a relative…I think it’s interesting that they picked me to talk to about that issue when there are people with disabilities all around them perfectly visible, but they, I think for several reasons find me possibly approachable, or, yeah. I think the, the purple mohawk and the class markers help in some way.

Shannon: Mm-hm, okay. It makes sense.

Liz: I want to say too, blogging and ties with disability communities online have been important to me. So for instance, finding GimpGirl, it’s run by Jen Cole and a bunch of people and finding the people who support them has been great for me and seeing what they do online to support each other, it’s been pretty amazing.

Shannon: Community is critical. It really is. I would say. So I think you’ve already talked a little bit about my next question which was, how your disability has affected your day to day life. But is there anything else you wanted to add?

Liz: Day to day life, I mean, sometimes I can’t leave the house, really. Or I’m, you know, things vary a lot. So, you know, I have the experience of having extended periods of time where I’m basically in bed. And have to adjust my experience, my expectations of the pace of life.

---

Shannon Des Roches Rosa is Senior Editor at Thinking Person’s Guide to Autism. She’s also a Shot@Life Champion, BlogHer contributing editor, writer, parent, geek, cheerful grump.

Twitter: @shannonrosa

Liz Henry works at Mozilla as their Firefox Release Manager. From her blog:

My latest book is Unruly Islands. I describe it as anarchafeminist techno-utopian poetry. It was published in 2012 by the Seattle feminist science fiction publisher Aqueduct Press. Read it – it’s completely awesome.

Blog: http://bookmaniac.org

Twitter: @lizhenry