QD Conference Proceedings: Panel: Queer Care

Moderator: Alicia Contreras
Panelists: Alex Anderson, Laura Hershey
Edited from Real Time Caption transcript by Eli Clare

Edited from Real Time Caption transcript by Eli Clare

Alicia Contreras [moderator]: Okay, can everybody hear me? …Good morning, good afternoon or good night. Are you in a party mood? How are we doing? After lunch is sometimes the hardest time to talk. Sometimes when people start feeling like, okay, I’m ready for a nap. Siesta, fiesta mood. I’m Alicia Contreras; I’m very glad to be the moderator today. I’ll try my best. I don’t think I have to do a lot because we have two wonderful, wonderful speakers today, right? [applause] Yeah. So let me introduce…Alex Anderson. She says, “I will highlight issues facing service providers who are gay and have differences. I will explicate prejudices from within the fields of service provision and the gay community that contribute to marginalization. Finally, I will describe possible methods by which to ameliorate these prejudices.” Let me introduce Alex who is going to speak to you today. Enjoy it. [applause] That was like siesta clap. I want to hear a fiesta clap.

Alex Anderson: Maybe I should tell you a little bit about myself. I’m a doctorate candidate in psychology and just at the point where I’m running three more subjects and finish the writing and may find out I got a job in Illinois. I’m Canadian. Just want you to know…. I have an undergraduate degree in theater and psychology. And I’ve got a strong background in education and teaching. Okay. So that’s me. I’ve also got a strong background in disability.

AA: Before I say anything else, I need to clarify. I upset someone this morning when I explained that I was not deficient. Disability really refers to difference or defect within the individual. And I hate that word, but it says it all. That something is inherent in the individual, that is problematic for the person. Handicap means something environmental or attitudinal that blocks the person from attaining full equality or being able to [use] their abilities to the fullest. I do not believe in disability. I believe that we are all innately whole. That we are human beings deserving of the same opportunities as everyone else. There is nothing wrong with being blind; that does not make me less able. There is nothing wrong with having a learning disability. That does not make me less able. And I am multiply handicapped. If I use the word disability, my tongue got twisted. I’m referring to handicap, and I mean the environment now too.

AA: Okay. By service providers I mean anyone in the health, mental health disabilities [field], naturopaths, psychologists, like myself, etc. So we do face a number of stereotypes that marginalize us as service providers. One is [unreadable]. The medical community, the psychological community, we work on the patient. We work on the client. We fix or repair the patient. We don’t work with these people. They are not our equals. They are the people that we work on.

AA: And we sort of bash the stereotype a bit and say, “Guess what, I’ve got the same education, same skills; I’m your peer.” That shows up in things, for example, when I had an internship working with children in a unit that was designed to assist children with visible and invisible handicaps. …I walked in and the first day the psychologist who consulted to the [psychiatrist] and who was to assess children’s cognitive [ability]. I was able to give intelligence tests and tests of social abilities, etc. She could not handle that and in fact, went out of her way to assure that I was unable to complete the needed tasks to assist the children. It was the worst internship I have ever had. I later learned that a social work student had the exactly same experience in their social work unit. It was one of the most disturbing experiences. And what she managed to do is [have me] fail the internship, a failure by ensuring that I could not use my skills to assist the children.

AA: On the other hand when people have allowed me to show my skills, they find out I’m a skilled professional. I have run support groups for students with [unreadable]. And I went into my background, and I’m an excellent facilitator. This is an issue to work on where there’s a huge issue and one of the things they need to do as service providers [is] focus in on our skills. I will discuss these solutions later.

AA: Another biggie is my slow Braille reading. Another biggie is the homophobia that still exists in service organizations. In 1994 the American Psychological Association and the American Psychiatric Association removed homosexuality as a mental disorder from the diagnostic manual. It was no longer considered by the psychiatric and psychological communities to be a mental disorder. That doesn’t mean that it’s changed with in-service organizations, within hospitals, etc. There is a subdued homophobia that probably all of us have experienced with the medical doctors or a psychologist or someone. As a service provider, as a peer, it becomes a real barrier if people don’t want to say, “I’m uncomfortable,” or “I’m homophobic.” And so they are pushing away now because you have a disability and pushing you away because I’m gay.

AA: The next one comes from within the gay community. There are four major ones. That persons with disabilities particularly when they are visible are asexual. And that particularly men with overall cognitive disabilities that effect all skills are hyper-sexual and will attack [you for your money]. It’s a really scary one. But for service providers, particularly, the idea is that you are asexual. …I’m going to combine two things, because I think I’m losing my time. This is both within the gay community and service organizations. We don’t have to worry about sharing our stereotypes about gay people because, “Hey, that service provider, so-and-so in the other unit, well, she could not be gay because she’s blind. Oh, well, you know Joe the psychologist over down there. Well, he could not be gay because he’s in a wheelchair. So obviously we can make all the homophobic [comments] we want because we are having meeting behind closed doors.” The gay community engages in the same stereotype. We are not seen as perspective partners because we are blind, have mobility issues, whatever. So we don’t have any kinds of sexual or emotional feelings. We have no need for relationships. I was over at a caucus for folks here who are blind and one of the things that we noted was really being isolated.

AA: Another issue is that when you are not perceived as a perspective partner, you are working very hard all day on behalf of others to assist others whether that’s to provide accommodation, advocacy, assistance medically, whatever. It’s a lot of stress. And it would be really nice to come home to someone who loves you and be able to go out with friends that love you and know that you are a part of that friendship. It is stressful to have yourself pushed away by your community of peers at work and by your community of peers at home personally. And there tends to be this kind of huge lump effect, so that you are feeling really isolated [and] lonely and you don’t have anywhere to share your feelings. Your peers don’t want to go to dinner with you at work because they don’t see you as one of them. Your gay peers don’t see you as one of them either. You are off in this separated area.

AA: I am also autistic. [We] describe ourselves as being from the other planet. We are on the outside looking in, and that’s how it can be as a service provider. You are working three times as hard just to convince them you are their equal. If you do as [much] as them, it is not enough. There’s no one to talk to. The tv is not that exciting to talk to. Sorry. It doesn’t talk back, at least in my case.

AA: So you’ve got all of these issues, and all of these issues affect everybody who is queer and has a handicap. But when you are doing anything related to service provision, it’s very high stress. It doesn’t matter how much you love the job. When you are working on behalf of others, working with others, developing accommodation programs with others, going in and teaching classes on disability issues, whatever. When you are doing that, 12 hours a day, and that’s usually what it is, you are using a lot of energy. And then if you’ve got to do three times the work for them to consider you half a person, you are going to be doing a lot more. So all of those issues start to compound, and you start to feel like you are being marginalized in every direction. All of us females, those who experienced discrimination. I recently [met] somebody who is blind. I cracked my joke about a [unreadable] mother. I thought she was gay-positive. She thinks that she can use terminology that I find offensive. And because I’m almost a psychologist, she thinks it’s appropriate to make fun of psychologists. I know there’s a neat person under there, but that’s a tiring way to spend your time.

AA: I’ve had clients that I work with think that I should be on constant call for them. And I can’t do that. And anybody in these fields knows that you need to set certain boundaries. But sometimes because you [work with people with] disabilities, people start to have trouble seeing the boundaries, and that’s true for service providers of all kinds, in any situation.

AA: Now, I think that a lot of us are very good at setting boundaries. The service provision community is convinced that someone with a disability can’t work in those service provision areas because they won’t be able to set the boundaries. You have to work with the client; you have to say they are important ethically and for your safety and my safety. And then you’ve got to work with the service provision community saying, “I am capable of setting those boundaries. I’m an ethical professional.” Again, there’s that.

AA: So what are the solutions? I’m going to throw a few things out, and I hope that people have other ideas. The biggie is advocacy and education. We need to be educating service providers, and we need do it in a macro type of model. There needs to be a push for organizations, for example, the American and Canadian medical associations. Medical associations all over the world continue to maintain some of these stereotypes. And they are really good at it. We need to be talking to psychological associations, again, worldwide. A lot of us from other countries are affected by the [unreadable] psychological associations, because they tend to have the most information, the greatest affect on people’s perceptions of what psychologists should be able to do. We in Canada have to learn the code of ethics for you [Americans], and ours is even stricter. We need to go to organizations as a group and say we need to educate you on our skills, why we are here, and why we are just as capable as you are. The American Psychological Association, as an aside, has nothing in alternate format. My school had to fight so that I could get the American Psychological Association style, which I have to follow to write my thesis put in alternate format. They are 20 years behind the rest of us, and so that education has to take place. We need to educate the gay community. We are out there. We are not dependent, passive people with no sexual life, with no interest in partnership, with no interest in love. We are as viable as partners. We are capable wonderful people, and we need to educate again as a cohesive group. Regardless of what our roles are in society, we are as deserving and as capable of handling relationships. We are wonderfully rich human beings. We need to educate the disability community. People with disabilities can be gay too, and we can be your service providers, and that’s okay. We need to educate all of these communities. And finally we need to educate ourselves. We need to be able to go into a situation and say, “Look, this is why I am good for the job, this is, this is, this is.” And we need to say it specifically. And we need to advocate. I was excited when I heard about this conference because it is a coming together of a group of people who are often isolated from one another.

AA: Okay. Thank you. I’ve got four more minutes. We’ve really got to come together as a cohesive group. Things like this are great because they are really building blocks. I would hope people would want to keep contact and develop a really focused [agenda for] educating the community. And we can build something beautiful and let people know we are out there. In service provision, it is very tiring, because I always feel I’m educating alone. It would be great to be with ton of other people saying, “This is reality. We are here. We are great people.” With that, I’m going to close. [applause]….

Alicia Contreras: Great presentation, Alex. I felt very connected with many of the things that you said and I’m sure that a lot of people here felt connected. Just wave your hand if you felt connected somehow. Yeah, make sounds. Do you feel connected to what Alex said? Yeah, I think that a lot of people does. Well, our next speaker, I have the privilege of meeting her being a trouble maker in China. That’s what I can remember about her, basically. …. And we were very close to being in jail probably but they were not accessible so we were safe, I guess. And we survived, and we keep saying, “We are never coming back anyway.” Anyway, I just want to say that it has been a privilege for me to meet Laura in the past. And I’m very new to the disabilities movement in comparison with a lot of advocates that are at this conference. And I feel that I’m really lucky that I have the privilege of knowing people like Laura and Corbett and others that have been mentors for me, and I want to take the advantage of saying to this panel, thank you very much. We will have Laura talking about queer disabled people who use personal assistance, negotiate a maze of policies and relationships. This presentation, led by P.A. user who is a lesbian, will discuss challenges including: coming out, attendants’ homophobia, privacy, partners providing P.A. services, requesting assistance with positioning for sex, attractions to attendants, and more. So let’s say, “Laura, welcome to this panel.”

Laura Hershey: Perfect. Can everyone hear me? Okay. Thank you for the enthusiastic introduction, Alicia. And I remember Alicia from the trip to China also. My advice to everyone is if you ever find yourself going to a very difficult country, where you expect to encounter a lot of stress, take Alicia Contreras with you, because she will pick your spirits up. She led us all in cheers every day, and she was always smiling and keeping us encouraged. That’s what I remember about Alicia.

LH: I think that there is already some expectations out there about what I’m going to talk about. I’ve been hearing people saying that during other workshops issues have come up around sex and other things. And people are saying, “Well, we’re interested in talking about that tomorrow.” So I don’t know if I’m going to meet everyone’s expectations, except that what I would really like to do today, I did have some things to say, some ideas to throw out, some comments to make and some questions to ask. What I’m really hoping we can do this afternoon is create a space where all of us can start talking about these issues, because I think it’s really, really important to us as a community, as people with disabilities, to come to terms with our support service needs, our relationships with our personal assistants, the policies that we have to deal with in terms of employing personal assistants and things like that. So I want to leave a lot of time for probably some interaction and discussion about these issues….

LH: So let me start by saying a little bit about myself, especially at a conference like this one it’s important for us to all acknowledge — especially speakers, to acknowledge our perspectives, where we’re coming from, and the limitations on our perspectives, because we come and we talk about, “Gee, we’re all one community,” but really we’re a lot of communities. We’re a lot of people. We have a lot of issues, some in common, some very different. And I think that we should be talking about that. So I am a white, middle class, college educated American woman with a significant physical disability, and a lesbian, and a writer, and an activist. I use a number of support services in order to live my life. I use a lot of assistive technology, and I want to talk about that a little bit later in relation to attendant services. Personal assistance is probably the primary support resource that I use. And by that I mean I have people whose job it is to come into my home four times a day to assist me with dressing, showering, eating, housekeeping, etc., paid by the state of Colorado under the Medicaid program.

LH: …The issues that I’m going to talk about, the experiences that I relate to, have to do with that type of support services: hands-on physical assistance from another person. Now, I think, but I’m not sure, that some of the ideas and issues that I’m going to raise may also relate in some ways to other types of support services, like people who use sign language interpreters, people who use readers for the blind, people who use job coaches or other types of disability-related support services. But I’m not going to claim to have experience with those kinds of services, but I would love to hear from people who do. And similarly, I’m not going to try to speak for people from other types of cultures where family structures might be different, where concepts of independence and help may be different. But again, I will have to hear from people about those.

LH: So the reason I wanted to do this panel, or this particular topic at this conference, is that I think, as disabled people, probably one of the most important things that we can do for ourselves is understand and take control of all of our services that support us in our daily lives. And there’s a lot of barriers to that understanding and control. There are significant economic and political barriers. Right? I mean, we all know that for a lot of people who need personal assistant services, there just isn’t enough. There’s not enough money allocated for that service. In some states there is no publicly funded assistant services. So anybody needing that type of support has to go to a nursing home or has to receive assistance from family members or has to move to another state. And even in states where there are publicly funded services, a lot of people don’t qualify or don’t know about them or for whatever reason can’t access them. So they end up being institutionalized, too. And you know, there’s been talk at this conference about some of the people that aren’t here, that aren’t represented in big enough numbers. People living in institutions are not here. And queer people in institutions suffer extreme isolation and oppression and abuse and denial of their right to be sexual human beings. So that’s one group that’s really not represented, and I think one of the challenges to the queer disabled activist movement, if that’s what comes out of this conference, is to reach those people that are institutionalized and, you know, living invisible queer lives.

LH: But even for those living independently in their homes with support services, there are still major barriers, I think, to really being able to do what I think is the goal, which is to enable us to live our lives as autonomously as anyone else does. Now, there’s been some discussion earlier today in a session about the idea of independence versus dependence. And I tend to use the word independence to mean autonomy, meaning the right to determine your life, make your own choices, and so on. I do know and I believe that it’s entirely possible to live a fully self-determined life, not despite having attendant services but with attendant services.

LH: So for many of us as individuals, but also for us as a community, the challenge is to live that fully self-determined life, to take control of the support services that we need, and not to fall into the trap of becoming disempowered or dependent because we rely on other people for personal care. So as I said, the barriers include political and economic ones, that we don’t often have enough services available, they’re restricted by hours. The policies of however we’re allowed to use our services, they’re often restricted to dealing strictly hands-on, approved, health care-related tasks, where the decision of how I want to use my attendant officially is not in my hands.

LH: But I think the even bigger barrier than some of those policy things is the attitudes and values in this culture about assistants, about providing, about what it means to receive that kind of hands-on personal assistance. Many people are taught to view that as degrading, as undignified, and as shameful. And so what I want to posit here today is a model of being a personal assistance user, which is not shame-based or is not based on minimizing or downgrading or hiding the use of personal assistance, but that actually celebrates that as a really important part of our disability experience and our culture. Unfortunately, I think a lot of us internalize the idea that it’s really not cool to need a lot of physical assistance. I’ve heard friends of mine, who are very assertive advocates, very strong political disability rights activists, who say, “Well, I really don’t like having to have help.” So they’ll say, “So I’ll sort of minimize what I need, or I’ll get by with less than what I really need.” And that bothers me, because it seems to be buying into that notion that a person who doesn’t need as much help is really doing better or is more cool or that that’s a more acceptable way to live. So I want us to change that. I want us to talk about why it’s great to be users of personal assistance services and what the barriers are that we can change.

LH: So, ultimately, I would like us to be people who use personal assistance services to live the most active or the most self-determined lives that we can. And that includes full expression of our sexuality, whether it’s queer sexuality or something else. I would like us to be talking about ways to develop better, more constructive, more productive relationships with our personal assistance providers, and I would like for us to talk about ways to take the control over those services away from agencies, whether it’s government agencies or private businesses, that we need to be taking away the power that those people have over our services and our lives. …I feel that, as one of the major manifestations of disability oppression in my life, in Colorado personal assistant services, as I said, are provided by Medicaid under a very medical model type of program. Most people who have a disability and get personal assistant services in Colorado must go through a certified home help agency. The state pays the agency. The agency recruits, hires, and trains attendants. And then the agency assigns those attendants to go work with the individual client. To me, that is a recipe for oppression and control over our lives. …There are several strategies that I’m involved with pertaining to that. One is at the policy level. I’ve been working along with the [unreadable] advocates to promote a consumer directed service option which is going to be starting soon, similar in some ways to what those of you here who live in California have: a consumer-directed model. Ours is different but similar.

LH: So that’s one strategy I’ve been active with. My other strategy…is just to say that concept of some agency controlling my life and my services is so unacceptable to me that I’ll do everything I can to take as much control myself as I possibly can. And what that means is that I, a long time ago, negotiated with the agency that I’m with, that I hire my own attendants. I put the ads in the paper. I do the interviews. I choose who I want, and then I send that person to the agency to get officially hired so that they can get paid by the agency. And I absolutely refuse to do it any other way.

LH: But even so, I have to put up with restrictions, based on state medical model policies. I have to hire people who are a certified nurse’s aid. And this, to me, is ridiculous, because it’s based on a very medical model training program. I’ve looked at the books used. It’s all about nursing home care. There is absolutely nothing in it about diversity issues or queer sensitivity by any means. So they’re really training institutional mind sets for people to go work in people’s homes. Another manifestation of it is that every — I think it’s every four weeks—okay, every two months (it seems like a lot more often)—a registered nurse has to come to my home and sit around and ask me a lot of questions, fill out a lot of paperwork, and watch my attendant providing my services. This is, you know, such an invasion of my privacy. This is somebody that I don’t know, that I didn’t choose to allow to come to my home. And for me what it is a reminder that the state doesn’t believe I’m capable of managing my own services, that I shouldn’t be trusted, and that, ultimately, the control is theirs, and that if they ever choose to stop allowing me to hire my own people, they can do it. So that’s sort of the policy context in which I’m operating. And I think that different states are different.

LH: [unreadable]… because the services are not under our control oftentimes, we’re dealing with layers of homophobia. Another way I have to kind of gauge the homophobia and deal with the potential homophobia of people that I’m interviewing for the job of my personal assistance, but also the agency itself, that’s a layer of control over my life that I have very little control over. At least with the individuals that work for me, we develop a personal relationship from the beginning, starting with the interview, so that I’m able to talk to the person about my values, my life, and about, you know, any potential problems that might be coming from them in relation to me being queer. With an agency it’s much harder to negotiate that. Let’s see. You know, privacy is a huge issue. When you do use personal assistance services, the amount of time that there is no one in the house is just less. I mean, especially for someone with a physical disability that uses attendant services eight to ten hours a day, that’s a person who is in your home eight to ten hours a day who is not part of your family, who is not your lover, but who is there. And that’s something that I find is a fascinating situation to negotiate and to deal with. And I think it’s very important to address that pretty openly in your own mind and with people working for you, because it’s important for them to recognize and for you to recognize that even with a person there working, it is your home. You need the home that you live in to be your home, reflecting your values and your life. And then that person works in that environment, and then they go home, and they have their own home that reflects their values, their life and what’s important to them. Well, we’re probably out of time. Will we have some type of discussion, Alicia?

Alicia Contreras: Yes.

Laura Hershey: Okay. Thank you for listening. [applause]

Alicia Contreras: That was great! Good news. We have time for questions and answers. So who wants to go first?

From Audience: Sex, sex!

Alicia Contreras: What is the question about sex?

From Audience: Ask Laura how she deals with having an attendant involved in sex.

Alicia Contreras: Why don’t you ask her? Why don’t you ask her? Why me?

From Audience: I don’t have a mic.

Alicia Contreras: Sorry. Can you repeat your question, please?

From Audience: How does Laura deal with using attendants for sex?

Laura Hershey: The answer is that I don’t use attendants for sex. I use attendants to enable me to create a life and a support system that enables me to go out and fulfill my goals and desires in all areas of my life, work, travel, friendship, recreation, and sex. And so I don’t use attendants for sex, never have, never will. But I use attendants to give me the freedom, the self-determination, the resources and the ability to maximize my own involvement in whatever it is that I want, including sex. [applause]

Alicia Contreras: Okay. Can everybody who is going to have a question raise their hands so we can have a clue of how many people? There’s one person, okay. There’s two persons. Let’s start with two persons….

From Audience: I can’t believe I’m at a conference asking this question. It’s a more specific sex question, actually. I have to, for the first time, negotiate a space where my partner is not able-bodied. So I’ve never had to deal with explicitly asking attendants for assistance during the actual act of sex before. And I’m just wondering if you have any suggestions about how to negotiate those very delicate boundaries.

Laura Hershey: …. I think that’s a really good question. I think it starts with good communication about what it is that your needs are going to be, in terms of whether it’s, you know, positioning, getting dressed the way you want to be dressed, you know, putting on a scent if that’s what you want, or getting props ready or whatever, and figuring out ways to do it, in communication with your attendant and also with your partner about how your partner can participate or assist you once the attendant is gone, and then communicating with the attendant about what your needs are before that person leaves the room. I personally would not want an attendant present during sex. I mean, you would be surprised. But two disabled people can do a lot more without assistance than you might guess. Some of it is just creativity, maybe with your partner at first, talking it over, how you want to do things, what can you do, what can your partner do. Then, you know, if it’s obvious that there’s going to be things you can’t do, in terms of getting into the right position or getting toys out that you might need or whatever, then, you know, you would talk to the attendant—in advance, I would hope—about what your needs are and then, you know, just get everything set up and let them know that these are boundaries. You’re not asking them to participate. But, you know, you might not be able to say that to the person, because it might be a new situation for them. And maybe other people have ideas about that, too….

Alicia Contreras: that’s all I know…. I really have had experience that when we have the good luck of meeting someone who is a little more experienced than us, sharing experience like this, where you have the opportunity of asking, “This is my first time. I want some advice.” I think this is a wonderful opportunity this conference is bringing. So I want to encourage people to share your stories, because there’s young people here who would love to hear those stories. And I’m sure Laura would agree with me in this, that there’s more people here who could give advice. I remember yesterday Vicky saying, for example, that she likes to have sex with two people at the same time. So maybe there are some advantages. Maybe there are a lot of solutions, like having three people. I don’t know. I just think we have the unique experience where we can talk and nobody is going to say, “No, no, don’t say that.”

From Audience: I would just like to say I enjoyed the presentation, and I would like to see the paper. I think it’s totally right on. And, Laura, your discussion about the issues of taking the power back from the agencies in terms of consumer direction of our personal assistance services: one of the things that I would like to hear about is what your policy guidance is on trying to take back the power from these agencies that control and medicalize our personal assistance needs, that in a sense, controls and causes fear in our lives, to ask for things that are outside the parameters of what holistic care. Let me just add to that, because I think it’s in the parameters of what the previous woman was asking, in relation to positioning or asking for assistance with some needs in getting prepared to have sex and those types of things.

From Audience: Here in California I think we have a union that is also involved. [unreadable] …a number of unions are involved in terms of unionizing caregivers, as they refer to it, and providers and home care workers, which I think also increases the distance that we feel in terms of being able to get our own needs met and causes fear in our minds. So I raise that because I’m not sure everybody is aware of that, but I’ve been around public authorities and registry meetings where I’ve heard people say they were going to turn a disabled person in for simple things like the disabled person asking that the attendant give their service dog a bath. And I think when you have people being turned in for asking something outside the parameters of the medical model assistance, it causes fear in our lives, and I want to know what you have to say about addressing those issues and trying to find solutions for taking back the power from these agencies. And I totally agree with your comments [unreadable and those types of things.

Laura Hershey: We were talking earlier today another panel about how, you know, in response to my problem or issue, there’s like the advocacy solution and then the individual solution, and we sort of have to be doing both at once. I think that’s true in any revolution, which is how I see our movement. My personal strategies [about] restriction on types of services is that I’m unwilling to let the agency know what my attendants and I are doing. We fill out the paperwork. We say we are doing what we are suppose to be doing, but we do what we want to do. I limit the amount of information that I give to them. To give you an example, I’ve been using some of my hours to pay an attendant to help process registrations and housing reservations and stuff like that. So when you mailed in your reservation and your registration, my attendant was typing in all your information. The attendants that we hire know that they work for us, even though their paycheck comes from an agency. We have very positive relationships with them. When we don’t, we fire them or they quit. So we have very cooperative relationships based on our needs. Not based on what the state says or what the agency says. Nothing we do is based on that, except for the stupid paperwork.

LH: So, you know, for instance, pet care. They are not supposed to take care of the pet, but they do. I’m sure people in California do the same thing, whether it’s around hours or tasks. You lie, because you have to survive. Not that you are trying to get something that you don’t deserve, but because you have the right to live a self-determined life, to have sex, to have a cat. To have whatever it is that you want out of life. To organize a conference. And my attitude is those resources are there for me to live the self-determined life, and I’m going to do that, and I don’t care if it’s against the rules.

LH: The second thing: about unions. I think I have a slightly different perspective about that. I really don’t feel that the attendants working for us are the adversary, and we should not treat them like the adversary. I think if there’s people joining an union, [it’s] because they are having labor problems. And if we as a disability community, if we don’t want to acknowledge that, it’s going to happen. On the other hand maybe there would be ways that we could kind of develop our own unique model of labor organizing that would be more cooperative. Because, really, I think P.A. users and personal attendants have a lot more interests in common than do the agencies and their companies that control them. So, you know, rather than just saying, unions bad, maybe what we ought to be doing is working with our attendants that represent both of our interests. If attendants’ [morale is] really low, that hurts both of us. That hurts attendants, and that hurts us. When you don’t make enough money to get your car fixed when it breaks down, and you cannot get to work without a car. Maybe we ought to be joining together to create a P.A./P.A. user union that could strike for higher wages without hurting disabled people. …I don’t know what the structure is that way in California, but imagine a statewide strike where for a full week the attendants do provide the care you need, but they don’t turn in the paperwork. That means the agencies don’t make any money. And they are forced to pay more higher wages. Maybe. And of course that means the attendant doesn’t get paid for a week. Provide food for that attendant’s family for a week out of your own kitchen. Work together. There would be some sacrifice. It would be mutual because we realize that it’s both of our lives at stake. I think we can do some stuff.

From Audience: Can I ask another question?

Laura Hershey: Somebody next to you has a question and then.…

Alicia Contreras: I need the microphone because the person that needs the mic…. You had another question, right. I want to share something, just to add a little international substance in this panel. Because as you can see here, we have represented really all North America, from Canada, U.S., and Mexico, and I’m very proud of that. So I just wanted to add a little international thing, which is, we are so, so different in our countries. I know the system in Canada works very than the U.S. and very different than Mexico. We are talking here how to deal with personal attendants. In Mexico there’s not a program that would provide people with personal assistance. I want to say that I was in a great position, which after fighting, I was hired by the government of the city where I was living to start programs for people with disabilities. And I really believe that somehow it’s very important that we, people with disabilities, could have access to those positions. Because being there, I was able to create this program. And I didn’t know every single thing about everything. I mean, I had to create something, and if people came to me and talk about what was working and what was not, I was always flexible to change the rules. But somehow you have to come up with some rules. Because otherwise it wouldn’t work. And what I want to say, it is really important that we do a lot of advocacy and that we really go forward for people with disabilities making decisions of how those programs should work. As Alex was saying, many times we have a lot of barriers to work as peers, because we are always seen or almost always seen just like clients but not like people who can work as peers. But in my experience when we can break those barriers and we can go to the top and be the person who is making decisions, we can really make a difference. So I would really encourage, especially to young people trying to decide what’s their career going to be, think about, you can be more than just a client. You can be the one who is going to make the decisions of how the system works. And we all need you because the services will be forever. Absolutely.

Alex Anderson: I just want to add for that, and I want to thank you very much for making that statement. It needs to be made. We are not just clients. We can be the service providers. Who knows better what it is like to be a client than those of us who have had to be clients. Instead of thinking of ourselves as clients, we need to start thinking of ourselves as the people who make the difference. For young people think about going into the fields that most affect us. When we become the doctors. When we become the care providers. When we become the personal assistants. I know that I heard that the NFB…. Community National Institute for the Blind doesn’t hire blind people as mobility and orientation instructors. Somebody pointed out to me, Amanda, who better [than blind people]. You said it is the same in Australia. And the same in Mexico, so we are talking a big international problem. Who better? Who better? So we need to fight to be in their programs. We need to say we are here and we are the best people to do this job. So really I encourage you very strongly to think about going into the human services because we are the people that can make the difference.

Alicia Contreras: you have a question?

From Audience: …Here in San Francisco. We have worked very hard with the in-home support providers and getting them proper remuneration. And in-home support receive free medical care. And we have our own San Francisco health plan which provides us healthcare. The problem is that there’s different types of provider networks that are set up. You have the commercial organizations that have their workers come out. They send out whoever they are. Then there’s the consortium, and then there’s the independent provider which you do the hiring and the firing of your people. You don’t have to work for any organizational framework. I was just talking to a social worker the other day and the persons that are working through the commercial organizations, as well as the consortium, will be losing hours because the consortiums and the professional organizations, they get the money first and then they pay the workers and there’s more money going to them. Whereas the payment systems through the independent provider is just going straight to the in-home support service worker. So more hours and more services can be brought in for the same amount of bucks. So I urge people, if they are independent or whether they have an [inaudible], to go straight through to the provider, rather than through organizational frame works at least here in San Francisco. I don’t know how it works outside of the city, but we have a good network set up for healthcare as well as the pay structure. The pay structure isn’t the best, but it’s better than some other areas of the country.

Alicia Contreras: Thank you very much for sharing your experience. That’s another thing that I have learned. Other people sharing their experiences is how I came up with some experience that made me feel strong enough to come up with a program [and] present it to the city where I was living. Thank you very much for sharing your experience. We have six minutes left. So is there anyone who would like to add a question or a comment? Or say something? Sure.

From Audience: Laura, in any of the times that you’ve ever had to fire any of the people or people have quit in terms of working with you, have you ever had anyone retaliate by, you know, going back to the agency and claiming that you had them do things, like feed your cat or anything that would give you problems with the agency? And in terms of the differences in the community represented here on the panel and in terms of personal assistant services [unreadable] and [in terms of] the idea that people with disabilities can be more than the client, they can also be the service provider, which is my goal is to be an administrator. Start changing some of these administrative policies that are antiquated and come down from Medicaid policy at the federal level on down to the state level. I’m interested in… the Canadian model. From my understanding it basically…gives you the paycheck and the payroll and give us the stuff that you need and hire who you want and make your own determinations and deductions. I haven’t seen anything on that other than maybe one study. I would like to hear something about that, thanks.

Alex Anderson: I wish I could say that Canada was so wonderful. We often drool over the Americans with Disabilities Act because that has alone put basic groundwork down. All we’ve got is the human rights code. …we have sort of individual codes in our different provinces. None of these things are very strongly held to, and really, for instance, in Ontario a parent with a special needs child could pick someone, and social services has to say it’s okay. If you’ve got two hours a week for a child that needs constant care and you are a single mom on a poverty-level income, you know, it doesn’t matter that maybe you could be involved in the decision. In fact, that involvement is being reduced. It’s very much is the same kind of model that you are talking about, that 1970s medical model. Ontario is one of the best ones, which is disturbing.

Some provinces do allow you to pick your own. Again, there are so few hours, and the limitations are such that it can be very difficult. The number of hours you are talking about, having someone come in four times a day is very rare in Ontario. [unreadable] They want people to be in nursing homes, because they think it is cheaper, and it is not, and the power has been taken from the people. I wish I could say something else.

From Audience: The fragmentation and disparities are such that it is very discouraging.

Alex Anderson: You are [saying] the fragmentations and disparities are discouraging. Yes. A lot of it really depends on individual’s ability to fight with the system. It’s too bad. We should not have to be antagonistic toward the system, but it does. It also depends on personal resources that the individual has. Personal resources make life a little easier because you have something to operate with. A lot of services have been caught in a lot of provinces. I don’t know how much people know about our socialized medicine. That’s affecting because it is based on a medical model. That’s affecting all of the services that people like, like personal attendants, home assistance, and community assistance to come in and work with children who require some assistance. It’s crumbling at the seams. It’s cracking.

Alicia Contreras: Thank you very much for everybody. [applause] Thank you very much Alex. And thank you very much Laura. And thank you for staying here and for sharing your experiences and with each other. I hope to see you again.

[End of RTC transcript]