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DVP Interview: Tara Ayres and Leah Rothman

Leah Rothman interviewed Tara Ayres. for the Disability Visibility Project™ at StoryCorps San Francisco on December 6, 2014. In this clip,Tara Ayres talks with Leah Rothman about the Michigan Womyn’s Music Festival, which she has attended for many years. Tara describes the intersectionalities of being queer and a person living with disabilities. Tara also shares about the DART community at Mich Fest, what it means to her to be a part of the community, and how she came into her disability consciousness.

Text Transcript:

 

Tara Ayres: Hi. My name is Tara Ayres. I’m 57 years old. Today is December 6, 2014 and I am in the downtown branch of the San Francisco Public Library with my friend Leah. Let’s see, Leah I know through lesbian feminist mutual friends.

 

Leah Rothman: My name is Leah Rothman. I’m 34. It’s December 6, 2014. I’m in the main branch of the San Francisco Public Library and yes, I know Tara Ayres through … specific I met her through Lee Evans.

 

Tara Ayres: All roads lead to Italy. Yes.

 

Leah Rothman: She’s in the hub.

 

Tara Ayres:

 

For a certain part of our community that’s really true. I wanted to talk about the history of radical feminism, and lesbian feminism, and disability and I wanted to particularly talk about Michigan Women’s Music Festival because that has been a place that had an enormous impact on me and my coming to terms with my coming into disability and my increasing disability, the place that saved my life.

 

I came out when I was 17, in high school, and came out into a lesbian feminist community where we were very busily looking at race, and class, and what we would today call intersectionality, but back then just called various forms of oppression. Not a whole lot, actually at that point I don’t remember there being any discussion over emphasis on disability as a form of oppression at all, but over many years of feminist activism, I had a lot of contact with women with disabilities in a particularly feminist context too who raised my consciousness about disability and were disability rights activist in their own right.

 

In 1990s, I was part of a group that organized a lesbian separatist conference outside of Madison, Wisconsin. We did that for a few years and some of the dykes who came to that were women with significant disabilities. A couple of them actually published a magazine called Dykes, Disabilities and Stuff. I actually feel incredibly grateful that they were willing to, rather than just kick my butt, actually educate me about disability and about access in particular. It’s a discussion that I’m really used to having specifically in a feminist context where I wasn’t having at any place else in the world.

 

Since I was 18 I’ve been going to the Michigan Women’s Music Festival. This past summer was my I would say my 35th or 36th time attending the festival so I’ve missed a few in there, not that if I could help it though. One of the things that’s amazing about Mich Fest, as we usually call it, is that there is a disabled resource area called DART, which has meant a number of things over the years, but right now it currently means Disabled Access Resource Team. I don’t remember when DART was founded, but it’s easily at least 30 years old.

 

Mich Fest is an interesting place because it is a rustic camping music festival. There are no permanent structure. Everything that’s on the land gets built for the festival every year and torn down at the end of the festival and there’s a real desire to have this little permanent impact on the land and leave as little footprint as possible. There are a few paved paths. There are some dirt roads. Most of the walking pads have wood chips on them to try and even them out and it’s very hilly.

 

When you think of accessibility, it’s not the kind of place you would think of ever, but the women who started the festival and the women who are running the festival all these years have a commitment to making sure that all women can attend and they really do mean that. All women should be able to attend. There are sliding scale ticket prices. There’s a scholarship fund. There’s a women of color tent. There’s a tent for older women. There are a bunch of services and areas designated inside the festival for different kinds of women, but there’s also this area called DART for women with disabilities.

 

Going camping, if you’re in a wheelchair, you have significant mobility concerns, how do you set up your tent and move your stuff then? They provide help with all of that. There’s a couple of paved paths that go through the center of the DART camping area. There’s also a DART RV area that’s further out from the center of the festival if you want to camp in an RV. I have bad fear of missing something so I can’t be that far out and away from everything.

 

Let’s see. I have multiple sclerosis so I was diagnosed 10 years ago. I clearly had it for a really long time at that point because I really didn’t want to be diagnosed. At that point, when I was diagnosed, I was still walking with a limp but I was walking okay. About six or seven years ago, I had arrived at the festival just having come out of an exacerbation and I could barely walk but I was walking and I set up in general camping where I always do and my friend Carolyn that I used to perform with at the festival basically kicked me and said, “You can’t camp at general camping. You have to camp in DART. You’re not going to be able to handle out here.” She actually packed up all my stuff and moved it for me.

 

I arrived in DART in great denial. I did not want to be there. I had been camping in the same place for years. Camping areas aren’t just camping areas. You camp with the same people everywhere. It’s your community. I did not want to move to DART. I did not want to acknowledge that I have a severe enough disability to have to be there. I was not a happy camper.

 

Leah Rothman: Literally.

 

Tara Ayres: Literally. You know something? Mitch Fest is my favorite week of the year. Every single year, something or some things happen at Mich Fest that change my life in one way or another, whether through deepening my understanding of myself or other women, through changing my political analysis, through giving me new skills, through learning new songs. I’ve had years where the entire festival for me was about taking dance intensives and I’ve had years where I sang in the choir so I sang all day, everyday or I’ve had years where I performed everyday. I’ve had years where I taught intensive workshops and so that was my focus.

 

I knew that about festival, but here I arrived kicking, and screaming in DART, bless Carolyn’s heart for getting me up there, and I didn’t want to be there. I so did not want to be there and by the end of the festival, I can’t imagine a better place to have been. It’s interesting because one of the things, for people who are not familiar with Michigan, the festival not the state, if you’re not familiar with Mich Fest, there are different camping areas. There are quiet camping areas for people who just don’t want to be close to their neighbors, and don’t want to have to hear anything, and want to be able to sleep well at night, and they’re noise-sensitive. There are free camping areas. There are loud and rowdy camping areas. There’s an area called the camp …

 

Leah Rothman: Chem-free and sober, right?

 

Tara Ayres: Yeah. Chem-free and sober. There is what’s called the twilight zone, which is where you go if you just want to go to sex parties all night in the woods. There’s family camping. There’s over 50s camping. There are lots of different camping areas. Then there’s DART, which is where women with disabilities who need centralized services camp. All of us in DART would probably prefer to be in one of the camping areas. You have women who want to be in family camping, next to women who want to be in the twilight zone, next to women who want to be in chem-free, next to women who want to be in …

 

Leah Rothman: Quiet camping. Yeah.

 

Tara Ayres:

 

Yes, exactly. This actually demonstrates one of the limitations of DART, which is that it’s an amazing thing. There are wheelchair lift shuttle buses to bring us in and out, to take us around the land. There’s a staff that is dedicated to making sure that women with disabilities get what they need during the festival. There are paved paths and an area where the area where the festival just doesn’t have pavement. There are many amazing things about it and it’s a segregated camping area, really. You don’t have to be a woman with a disability to camp there, but somebody with a disability has to be a part of your group. There’s a very limited amount of space.

 

We don’t have the luxury of having these services all over land so at the same time that we have this amazing opportunity to be in a place that would otherwise be totally inaccessible to us, we’re also ghettoized and it’s funny because I have been working on the DART crew. I’ve been going as a worker rather than a camper. Again, in the last few years, I worked for many years ago but I hadn’t been a crew member in a year, so I’d been working again in the last two years in DART and I don’t remember why I was telling you that.

 

Let’s see. We provide all these services. Oh, I know. It’s about ghettoization. Every single festivals since I’ve been working, the women sneak into the DART office apologetically because we’ve got a tent office. Women will come in and say, “I know I’m not really allowed to be here,” and it’s like, “Excuse me?” Women think they’re not allowed to come into DART if they don’t have a disability, which is scary, actually. I’m not actually sure why anybody would think that because it’s not like there are gates around it, but lots of women think they don’t belong there. Women will come in and ask and say, “Well, my partner is not here, but she’s got this, that or the other medical condition. Could she be here next year?” Then, “Can I camp with her?” It’s like, “Okay.” That does to me, actually, speak to the fact that it’s this weird, strange, segregated area really at some level. Not enforced segregation but we’re all stuck there to a certain degree.

 

Regardless of that, I mean that is one of the drawbacks of the festival, there are some amazing positive sides of that and for me, when I arrived in DART not wanting to be there, of course immediately my new neighbor showed up and they became my new best friends. Just a very typical festival experience for almost everybody. I think you’ve probably experienced that or many of us have experienced that. These are actually women not only still camp with most years but they’re women that I have regular contact with outside of the festival during the other 51 weeks of the year too.

 

The other thing that you have in an area like that where we all show up because we need services … all the women who camp in DART, there are women like who have fairly significant mobility impairments. There are women who are there because we’re the only place on the land where you can plug a CPAP in or recharge a power wheelchair or a scooter. We’ve got electricity. No, there’s no electricity … again, rustic camping festival there’s no electricity anywhere else on the land that’s accessible to campers.

 

As you can imagine, we’ve got women who don’t really think of themselves as disabled who camp there. We’ve got women who don’t want to identify as disabled. We’ve got women who are totally righteous, amazing disability, just as activist. We’ve got this and we’ve got women who are coming in because they’ve had an injury and so they really don’t have any kind of permanent disability and so they’re freaked out about whatever is going on with their body, so are women who are really disabled who are freaked out about what’s going on in their bodies, like I was my first year in DART.

 

You throw all these women together and of course we all come into DART in the same way that many of us come into disability generally with all of the stuff that we learned in an ableist culture. The fact that I showed up in a more or less feminist venue with a lot of other women with disabilities doesn’t mean that I have any disability consciousness necessarily. This is actually one of the things that was so amazing for me about DART is that suddenly I am with these women who know so much about disability and know stuff about disability both from a lived experience of practical, how to MacGyver the world to make it work for you to how to go out and chain yourself to a bus to make the transits to become accessible. We’ve got that range of both political understanding and personal adaptation as well.

 

Since I was lucky enough to have already been in a community that had at least some disability awareness, I wasn’t starting from a place of … my mother for example, who also had MS, was in a place of anything would be preferable to having a disability. That it was tragic. That it ruined her life. That she was deeply ashamed for anybody to see her in a wheelchair. She didn’t want to go out. When she really couldn’t walk anymore she never wanted to leave the house anymore.

 

Luckily, I already knew lots of women with really severe disabilities who had amazing lives or amazing women, so I wasn’t actually starting out from a place of I’d rather be dead that be disabled, which is, unfortunately, where a lot of people with recent injuries or recent acquisition of disability start, because I knew I could have a great life. Luckily, because I’d already been in a community with women who had kicked me in the head and said, “Psst! This is how it is,” but it’s different dealing with myself and it was also very different having access to women to talk about disability from inside the community than from outside.

 

It’s in the same way that I don’t feel that people of color have any obligation to educated white people about racism, but I’m deeply grateful when they are willing to. Up until I had a disability, I didn’t feel like the women I knew with disabilities had any obligation to educate me. I was just really glad that some of them were willing to because we were in community with each other, but what I discovered is once I actually had a visible disability myself that my relationship to women who had been in that position started to shift and from an insider perspective, we’ve got an obligation to educate in our community and also I got a lot more slapping of the side of the head like you need to get this now. You really, really, really need to get this stuff now.
I arrived in DART. I didn’t want to be there, kind of in denial, and from the minute I am in DART I’ve got women being kind to me, taking me under their wing, but I’ve also got women commenting on everything from ableist language that was coming out of my mouth to, “That piece of adaptive equipment you have really is not the right one for you,” or, “You need to be thinking about something else.” What’s happened to me over the last several years is that I have forged lifelong connections with these women. I found women that I can talk to who have similar things going on in their body that I had never ever had the opportunity to talk to or probably ever feel safe too talking to anybody in a different context about everything from how do you deal with sex when you can’t move this part of your body or what do you when the Port-A-John is a quarter of a mile away from your tent and you’re going to have to figure out how to get down there in the middle of the night? How do you deal with that kind of stuff?

 

From that to what do you do at the concerts when you can’t get up from the ground and you actually want to sit with your friends. Just a whole more practical day-to-day stuff out here and the rest of the world as well. “Oh, look at that piece of equipment you’ve got on your wheelchair. I could totally use one of those” or, “Ooh, I could take that and then I could modify it.” I’d always thought if dykes couldn’t MacGyver something, it couldn’t be MacGyvered, but now I figure, “If disabled can’t MacGyver something, really nobody could do it.”

 

Leah Rothman: Raise the bar there.

 

Tara Ayres: Yeah, it really does.

 

Speaker 1: Would you be willing to describe what it felt like to … ? I know you said you arrived at the DART camp, you didn’t really want to be there, and now this is a huge part of your community.

 

Tara Ayres: It is a huge part of my community.

 

Speaker 1: Can you describe what it felt like to initially know some people but then to arrive and become a part of a community?

 

Tara Ayres:

 

 

 

 

 

 

 

 

Absolutely. There were folks that I felt almost immediately connected to and felt like we were instant friends and this is a phenomenon at this event, anyway, that you get this. There were also folks who were like, “Okay, you’re here. We’ll see how this goes.” Also there are folks who just have better boundaries. Part of what happened emotionally over the years is that … and of course my disability progressed because I walked into DART and now I hardly ever get up out of my wheelchair except to stretch. I’m certainly not going to get up and walk to the bathroom or whatever. My disability has progressed significantly. Women who I think once upon were just like, “Okay, she has a disability but she’s new to it and she’s also really still a walker. We’ll wait and see.”

 

One of the things that has happened is I’ve just gotten some of these women better. Some of them is that they have actually watched me, watched my disability progressed so physically, I move more similarly to how they do and some of them have actually watched me do my homework. I didn’t actually expect somebody in DART had the obligation to educate me about disability and I’m deeply, deeply grateful that they have and deeply grateful for those conversations in that community, but I’ve also spent a whole lot of time on my own learning about disability and learning about disability politics, and disability rights, and disability justice, and the history of our movement, and about disabilities other than my own because it is a movement that has been fairly significantly dominated by wheelchair users as opposed to people with other disabilities, so I’ve been actively involved in the last year or two in the NeuroQueer Movement which is for people who have neuro diversity of various kinds from autism, to psychiatric disorders, to multiple sclerosis.

 

Back to your question about the festival.  Some of these has just been years of knowing people. I mean, we camp next to each other every year so I know what kind of coffee they like of what kind of beer they like to drink. The friend that camp with every year now she and I both love to feed people and she halls this huge kitchen that makes coffee and also she halls coolers full of food and feeds people. We have the morning coffee clutch at our campsite every morning and so there’s a group of women who just come and have coffee every year.

 

One of the things that’s amazing about that is that we certainly have the opportunity to just say, “Oh damn, this thing happened,” or, “That thing happened,” or, “What are we going to do about this?” We have our political strategy, but some of it is just that we don’t actually have to talk about disability that much. We can just talk about our lives, because there’s a level of understanding, without having to spend a whole lot of time educating each other. It is a place I love doing political strategizing and it’s a place where we do a fair amount of plotting together, but emotionally, we don’t actually have to. Let me keep my handkerchief. We don’t actually have to spend a whole lot of time … I got it in one of my pockets. Thanks. It’s background, it’s baseline, which is an incredible gift.

 

There’s this thing that I think happens for most women when they get to the Michigan Women’s Music Festival for the first time is there comes a moment where you realize that you’re not in danger and if you’re a woman living in a culture where sexual assault is as prevalent as it is in this one, I’m not conscious that I’m walking around afraid all the time and walking down Market Street to get to this interview. I’m not worried about somebody jumping me but, as a woman who lives in a rape culture I am always, always braced for … I’m always vigilant. I’m always looking around. I’m looking to make sure that I’m going to be safe.

 

This thing happens at festival every year and it happens to almost all of us. I mean, everybody I’ve ever asked about it happens at some point where it could be you’re walking around without a shirt on or because it’s a clothing optional festival or you’re walking down the path late at night and you realized you have just dropped to this amazing load of tension has just rolled right off you because you’re not afraid of being attacked. You’re just physically safe in a way that I don’t know or that I never relax at any place like that else ever.

 

There’s that from a woman’s perspective but there’s this other thing that happens there when I’m in the middle of a bunch of other women with disabilities in DART at festival which is that I don’t worry about having to deal with funky attitudes. I don’t have to worry about somebody saying something offensive and it’s not that we’re all perfect. All of us grew up in an ableist culture so we’re all unlearning ableism to various and degrees, but I feel recognized, and mirrored, and seen in a way. I don’t really any place else on the planet and it’s a gift. I get to come home to these.

 

When any woman arrive at festival, one of the first things somebody says to her is going to be, “Welcome home.” Home’s not necessarily been a place of great safety for all of us, so I don’t necessarily know that that’s an analogy that works for everybody, but for me in DART, it feels like what home should feel lie. It feels like I am there with my sometimes screwed up, quirky community of people that I love, and who love me, and who recognize me for who I am, and that’s amazing. It’s not like we get along all the time or it’s perfect, but it’s a sense of homecoming, and belonging, and recognition.

 

Part of the problem with having a disability in this culture is that one of the things anybody needs for a decent mental health is a sense of realistic mirroring and you don’t get this in this culture if you have a disability. You don’t really get it if you’re a woman either, so for me this is an event that does both, that mirrors me in both those ways. You look like you have a question.

 

Leah Rothman:

 

I do have a question. I’m wondering about you were talking about the extra pressure put on that social situation of DART where this is a group of women who otherwise would not choose to camp together. They would be choosing to camp in various other specialized by interest or temperament or whatnot.

 

Tara Ayres: Yeah. Because I really wanted to have that crying baby on the tent next door.

 

Leah Rothman: What I’m wondering is is there a culture at DART that is cognizant of that situation and how is the culture at DART and how is the culture at DART sort of … how does that look to respond to that fact of these disparate realities and class quarters?

 

Tara Ayres:

 

 

 

 

Well, there isn’t just one DART community or DART culture, so I can only really speak for … that’s not true. Because I work DART now, I see a lot of it, but one of the things that I like about the focus, I can’t put the DART that is something that informs how I respond when women come to the DART office and want assistance dealing with conflict is that we talk to each other stuff. The folks I camp with wind us up and let us go and we’ll go on, and on, and on how there should be more camping space and we shouldn’t have to … there should be enough resources to allow us to have different camping areas. We can go on, and on, and on about that.

 

Well, we also recognize the limitations of the resources of the festival, but we also talk to each other. When Melinda brought her baby, I am not a parent by choice, and crying babies do not make me happy, and Melinda has spinal cord injury, and she’s been coming to the festival since she was 13 years old. She has the right to come with her child like any other new mother would. I think it was Melinda, the year she brought her son for the first time, I think she actually brought earplugs for her neighbors. Honestly, the baby wasn’t any worse than a lot of my neighbors who snore really badly, so I really bring earplugs.

 

We try to talk about community boundaries. There are some divisions in DART that are established by festival, like there’s a chem-free area and a chem-okay area. If you are clean and sober and don’t have to be around somebody drinking alcohol or smoking dope, then you just camp in the chem-free area. I actually always camp on the edge of that because we drink coffee on the chem-free side but I camp on the chem-okay side of the path. For those of us who are on both sides of that, but I’m on the chem-okay side of the path but I don’t like cigarette smoke and all of my neighbors on my side of the path smoke.

 

We just talk about it. We talk about what’s going to work for us and where the wind is. Some of it is about negotiation boundaries and it’s about negotiation agreement and community. It’s like a microcosm of an intentional community for a week or eight days every year. It gives us a chance to flex those muscles and try that out. I don’t know, did that answer your question?

 

Leah Rothman: Yeah, it does. Yeah, that’s really interesting.

 

Tara Ayres: There are lots of other parts of DART too. As I said, this informs how I deal with women coming to the DART office and this isn’t just DART. I’m sure if other camping areas were staffed, which they’re not, I’m sure …

 

Leah Rothman: Had an office, yeah.

 

Tara Ayres:

 

 

 

If they had an office, I’m sure they’d get the same kinds of things, but there is thing that I would call it mom, make her stop. Women who are not getting along, somebody will come into the office and say, “She’s blah, blah, blah, blah, blah.” It’s like, “Uh-huh, and? Okay.” This is also part of my orientation from being DART and some of it is just my orientation as a disability rights activist which is that I don’t want somebody else infantilizing me. I don’t want somebody else telling me how I’m supposed in the world as a person with a disability. I don’t want someone else telling me and I certainly as a woman don’t want other people telling me that I have to be nice. I certainly, do not want women telling me how to be nice or that I have to be nice.

 

I have enormous in community building. I have enormous interest in all of us learning to take care of ourselves and being with each other in a compassionate community. When we get the make her stop or she’s breaking the rules or you need to establish a rule, there’s often that. There are often a request for make rule. It’s like, “Well, do you really want me to do that? We would be willing to come and facilitate, but really, this is going to sound harsh, get over yourself and go talk to her,” or if there’s actual physical health or safety issue we will address that much more assertively. Do you really want me making up rules for how you all should interact? We’ve been fighting people doing that for years because I’m happy to make up rules, hey. I can make up rules until the cows come home, but maybe you don’t want me to that. Maybe you all have to talk to each other.

 

There are areas that are incredibly contentious and there are areas where our needs absolutely conflict with each other. Actually, in inside festival we’ve got an issue that’s going on in the greater world now which is service dogs versus emotional support animals and then of course the abuse of people who are claiming they have a service dog or an emotional support animal. All in an environment where there are no national standards or certifications that say how a dog has to be trained or how it has to behave to have one of those categories.

 

For example, last year, we had somebody who had brought an emotional support dog and for the women who bring service dogs to fest, first of all, it’s a pet-free environment. Get three or four thousand women together, most of whom have cats or dogs at home, and make them leave their animals behind, and then put a couple of dozen dogs in the middle of that and those are going to come in for the a lot of attention that you don’t want service animals to have because miss our dogs and working dogs aren’t pets. All of the women I know at festival who has to have service dogs, which is several of my neighbors in DART, spend a lot of time fending off unwanted, “Can I pet your dog? Can I pet your dog? Can I pet your dog?” Spending a lot of exhausting times doing education around that.

 

We’ve got two other things that have started happening in festival. One is we have women bringing emotional support dogs, which aren’t trained the way service dogs often are not trained at all. Then we’ve got women who just are used to scamming the system and know that they can get their doctor to write them something in festival, be forced to allow them to bring their dog in even if it’s not an actual emotional support or service dogs.

 

Let’s forget the abuse. Let’s just talk about the women who have dogs that aren’t adequately trained. We have a lot of issues with women who have emotional support dogs encouraging all to pet them and interact with them. That totally undermines all this work we’ve been doing with regular service dogs to make sure that they’re treated as working dogs and that we all just ignore them. Last summer, after having had some fairly belligerent run-ins with a couple of people who had dogs who clearly, I’m 100% certain, were neither service dogs nor true emotional support dogs where women were just belligerent about asking them to control their dogs, get their dogs to behave better.

 

One of the DART workers had an amazing conversation with one of the women who was inviting everybody to pet her emotional support dog, her therapy dog and she really got it. She absolutely understood why that was difficult for all of the service dog owners that she was encouraging everybody to pet her dog. Actually, we did some brainstorming about well, so if there were women who were in crisis who wanted to touch her dog, could they do that in private? She didn’t actually have to encourage people and didn’t have to be out in the public place. We helped her do a little reconfiguring of her tent area so that she had a private place to do that. That worked for her and it worked for us.

 

It’s not that the stuff is always easy to arrive at, but it’s like let’s just talk about it and we can figure it out. In the same way that there are women who don’t come over to where I camp because there are a lot of service dogs around and their allergic. Not every accommodation for one person is going to be … some accommodations for some people are going to make things inaccessible for other people. It’s one of the reasons I don’t have a service dog. We work stuff out in the community. I think that’s the goal anyway and it doesn’t always worked out as well as I might like, but we’ve got almost 48 years of history of looking at each other in the eye, and talking through really hard stuff, and we’ve got that in DART too.

 

We’ve also got women who’ve never been to festival before who came for the first time every year, but even for them they get to see and I get to see as model a different way of doing it than you see in most of the rest of the world. You also get to see us kick back and drinking beer. That’s the other thing, models of disability out in the rest of the world are so bloody sanitized and/or so infantilized or so whatever. The fact that there are women sitting around partaking of substances that perhaps aren’t authorized in other venues or are just …

 

Leah Rothman: You know, being human.

 

Tara Ayres: Yeah, being human. That’s also mirroring, in a way, I don’t get any place else and that’s not entirely true because I certainly have a lot of friends with disabilities, but it’s different when you’re hanging out in the woods in your underwear for a week or naked for a week.

 

Leah Rothman: Or that, yeah.

 

Tara Ayres: Mm-hmm (affirmative). Yeah.

 

Leah Rothman: I was listening when you’re talking about the importance of autonomy and how you bring that consciousness in your role in the DART office and then I was thinking about what you said about the first time you showed p at DART. It sounds like it wasn’t your idea exactly.

 

Tara Ayres: It was a friend who said …

 

 

Leah Rothman:

 

I was wondering about the tension there. What was that like?

 

Tara Ayres: Well, I actually knew she was right. When Carolyn moved me up there, I absolutely knew it was the right thing to do. I was actually thinking about going home because I didn’t know how I was going to cope where I was camped and she basically said, “That’s ridiculous. There’s a place you could be that would allow you to stay,” and it’s like, “Okay, yeah.” I don’t need some stranger on the street assuming I need help unless I’m lying on the ground, thank you very much. If it’s a die-in, leave me alone too. Sorry, I’ve been quite through a lot of protests the last few days. I will cut my friends a lot more slack for pointing out the fallacies of how I’m thinking about my situation that I wouldn’t cut some … I mean, I spent a lot of time fending off unwanted offers of help as every wheelchair user I know does, but it’s a different thing when my friends are saying, “Here’s what you’re saying.”

 

Leah Rothman: You don’t need to go home.

 

Tara Ayres: Yeah, “You don’t need to go home. Really? That’s a really bad idea when I can take your stuff up the hill here.”

 

Speaker 1: I know you talked a lot about arriving in a disability consciousness and, you know, doing a lot of homework.

 

Tara Ayres: Absolutely.

 

Speaker 1: I’m curious what homework would you hope that those outside of and inside the community would seek for themselves.

 

Tara Ayres:

 

 

 

That’s a good question. How to be effective allies and how to educate themselves. For one thing, there is a wealth of literature about disability from a whole variety of perspectives and a lot of them were and then a lot of specifically political analysis of disability. I would hope that folks would take advantage of that and for folks who don’t have the attention span to read an entire book, which I know several people who don’t have that attention span, there’s also lots of … if you’re going to read books you can read No Pity and you could read any of Simi Linton’s books or Nancy Mayer’s books. There a couple of disability studies readers out there. There’s lots of written material and disability studies is this huge field so there’s lots of stuff out there. Connie Panzarino’s book, which I think is Look Me in the Eye, but one of the early lesbian disability memoirs. Amazing book. Definitely you can educate yourself.

 

There’s so many disability Facebook groups. Actually, one of the things I love about the disability Facebook groups that I’m part of, like the NeuroQueer group, when I joined that group and I’m supposed to, and I’m doing air quotes here, I “belong” to that group, because I have a neurological disability, but I didn’t actually know a lot about autism. I knew something about mental illness and psychiatric impairments because there’s been a lot of feminist work around psychiatric abuse, but I didn’t know enough. I can actually lurk on these groups and watch the conversation and nobody has to go out of their way to educate me. I can just learn.

 

The other thing I would ask the people do who aren’t inside this community is to think about how to be effective allies in the same way that I try to think about being an effective ally to people of color. Look at in the same way that I’m looking at institutional racism where I encounter it and looking at where people of color don’t have access. I would hope that able-bodied people or able-minded people who want to be allies to people with disabilities would look at institutional barriers and look at where there isn’t access and would also check their own attitudes about who’s human, and who’s fully human, and who’s not. Strive for a culture of inclusion rather than exclusion.

 

For me, I would like if people would schedule things and venues that are actually wheelchair accessible, and that if you’re going to have an event get some ASL interpreters, and make sure that there’s signage. Make sure that if there are written materials they’re presented in alternate formats. There are lots of simple things but essential things. If we can’t get in a door, we can’t be part of your community. I’ve actually ended a couple of friendships with people who were persistently organizing events in places that they build as community building that I couldn’t get into. It’s like, “What community are you building? Who is it for? Because really, it doesn’t include me.” Not only does that not feel like being an ally, friends don’t do that either.

 

Educate yourself. I think the process is totally analogous to white people learning about racism and white privilege. Self-education. Not to mention, I have to say when I started reading disability rights theories stuff, wow, it was the first time in years I had seen new political theory that I thought was exciting, and interesting, and there’s a lot of really exciting, interesting literature out there. If you like that kind of stuff, it’s a really intellectually rich field to start reading in and then you can have cool discussions with your friends about it. Okay, that felt like a stopping place.

 

Music Credits: “Sparks Fly” by Waxahatchee and “Rosalie” by KieLoBot. All songs under a Attribution-NonCommercial 3.0 International License

Source: Freemusicarchive.org

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Suggested Reference

Disability Visibility Project™. (6/9/17). DVP Interview: Tara Ayres and Leah Rothman Retrieved from: https://disabilityvisibilityproject.com/2017/06/09/dvp-interview-ta…and-leah-rothman/

Image Description:

A photo featuring Tara Ayres and Leah Rothman was taken on December 6, 2014

A close up portrait of two women outside the metallic exterior of the StoryCorps booth sitting next to each other, both facing the camera. The woman on the left, Tara, has chin length curly, brown and gray hair. A pair of glasses are propped up on top of her head. Tara also has blue eyes, identifies as white, is dressed in a turquoise leather jacket with a light blue scoop neck t shirt and a thin silver chain necklace with a larger silver pendant. Tara is facing the camera and smiling. The woman on the right, Leah, has short dark brown hair, is wearing oblong dark brown glasses and appears to be white. She is wearing a collared button down shirt that is tan with muted black, green, and dark red plaid stripes. Tara is facing the camera, smiling, and also has two black backpack straps visibly around her shoulders.

Credits:

Produced for the Disability Visibility Project™ by Yosmay del Mazo and Alice Wong with interviews recorded by StoryCorps, a national nonprofit whose mission is to provide Americans of all backgrounds and beliefs with the opportunity to record, share, and preserve the story of our lives. For more: www.storycorps.org and www.disabilityvisibilityproject.com

For any questions, please refer to the Terms of Use.

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