Interview: Latin American Advocate Joins Mental Disability Rights International

Q. Disability World was very taken with the fact that all of the Hearne awardees this year were very involved internationally, which is not typical. So we like to know first about you and your background and how you got into international work?

A. I'll start off with how I got involved in international work. It was actually pre-onset of disability. I graduated from Cornell University and wanted to do some sort of long-term service project in Latin America. My concentration in undergraduate had been U.S.-Latin American relations and I was really angry about how the U.S. intervention in Latin America had played out. So I wanted to do some kind of service project in Latin America where I would see for myself the impact of U.S. policies.

After graduation, I went to Guatemala and joined a team of a U.S.-based NGO called Witness for Peace. We were accompanying returning refugee populations who had fled Guatemala in the early 80's during a time of really intense repression. The refugees were living in Southern Mexico in U.N.-sponsored refugee camps, and we were accompanying them back to Guatemala, living with them in their communities, and bringing delegations of U.S. citizens to learn about their reality, who would then return to the States and do grassroots organizing there on changes in U.S. policy. So that was how I got involved in international work and I had worked with them for two years and worked with a U.N. mission documenting human rights abuses and making recommendations on how to improve the situation.

Stint in Guatemala followed by "culture shock"

Q. To the U.S. government or to the U.N.?

A. To the Guatemalan government. They were reports that went to the U.N. but they were basically recommendations to the Guatemalan government as to how to reform and enforce human rights. During that time, I came to the conclusion that if I really wanted to make a difference in the human rights situation there, that I had to be a lawyer. Without a legal profession I really felt like there were so many abuses that continued to occur and there was really nothing I could do without a legal background. So I returned to the States thinking that I wanted to go to law school, but fell into a severe depression when I got back. I think it was a combination of factors, including returning to the States where I experienced enormous culture shock after living in Guatemala for three years.

Q. What year was that, when you came back?

A. 1996. And it was not really knowing, you know, after having this international experience, not really knowing what I wanted to do next. Thinking about law school, but "Life in the States" seemed to be so trivial in a lot of senses. I remember coming back and one of my relative's biggest concerns was what color off-white she wanted to paint the wall. It was distressing. And I remember not really being able to get out of bed and just praying that I would die in my sleep. Just really not wanting to live. And after a few months I started to feel a little bit better.

Q. Where you getting any professional help?

A. I was. My parents convinced me to see a psychiatrist and she put me on Zoloft, and after a few months I just felt giddy and stupid and not myself. I didn't feel like I was any better, but just felt like this drug was making me laugh at ridiculous things. So I stopped taking the drug and stopped seeing her. I would go to her office and sit there for an hour staring at the carpet. I just really didn't have anything to say to her, didn't feel a connection with her. So after a few months I had stopped taking Zoloft, and I remember in my dreams, right around this time I started having dreams about being able to do things. Being able to dance, being able to pick up the violin and play the violin, just being alive again in my dreams. And I remember slowly starting to feel better, starting to socialize again, and starting to feel much better.

Q. You sort of pulled yourself out of it without any drugs, essentially.

A. Essentially, but then I started to feel like I was on top of the world. I kind of started to feel like I was Wonder Woman.

Working uphill against society's image of mental illness

Q. Bi-polar?

A. Right, exactly. So after a few months diagnosed with bi-polar disorder and hospitalized and went through several months of being hospitalized and leaving the hospital. I guess after I left the hospital, it took me a couple of, certainly a good year to kind of begin to feel comfortable in society again. Being hospitalized was such a frightening experience, partially because I knew absolutely no one who had had a mental illness and was living successfully in the community. You know. The people that I saw in the hospital were the kind of people that rotated in and out of the hospital, or you heard about people who lived with their parents at home for the rest of their lives. So this was the image of mental illness that I had.

Q. And you didn't have any symptoms before, you know like when you were 16 or 17?

A. No, I think I had the kind of traditional adolescence, you know....

Q. It's kind of hard with adolescents to tell.

A. Right, right.

Q. With women, it's much for common for the onset to be 15, 16, 14 even, with females. They don't know why. Which is also one of the things that makes getting the medications so tough. It's a question of the hormonal balances being affected more, or the medication being affected more by the hormones. I don't know whether it's chicken and egg, but that is a much more common situation with woman. Woman suffer from depression much more than men do. And it's typical that people with bipolar don't like the feeling that the drug gives them, they don't feel real. It's either real dampened, or real high, but neither is the so-called normal feeling. But it sounds like yours was pretty....

A. Textbook.

Q. Right, not that I'm a doctor. I don't think that we understand that much about the disease.

A. No, I don't think we really understand that much about different mental illnesses. I just finished a book not that long ago, "Mad in America:" The subtitle is: "Bad Science, Bad Medicine, and the Enduring Mistreatment of the Mentally Ill." It's an historical look at the treatment of people with mental illness from basically the founding of the nation, right up to the present day, and it's kind of an exposé on drug companies and the so-called research.

First forays back into studies

Q. So you kind of got through this episode, and then what? Decided to do law school?

A. I wasn't convinced initially that I could do law school. I remember my first foray back into studies was taking a course in paralegal studies at a community college. When I first left the hospital I remember being in an interview to receive social services, and the interviewer asked me, "How do you spell house?" And I said "h-a-w" and stopped and just asked him, "Why doesn't my brain work?" And he just kind of gave me this blank stare. It was really disconcerting; my brain just didn't function when I first left.

It could have been the medication, it probably was, but I wasn't convinced that I could study again at all. I really thought that I was going to live the rest of my life between my parents' home and an institution, and never be able to have an independent life. So over the next few months I started working at a community kitchen and that was really my first re-socialization. I would go there twice a week for a few hours and was kind of convinced that everyone would stare at me and point and say, "She has a mental illness." But that didn't happen and so I started taking this paralegal course at the community college and found that I could read, and I could analyze information, and I could write and so little by little that seemed to be....

Q. Where you on medication at the time?

A. I was. When I first got out of the hospital I was on a number of medications and I don't really remember what they were.

Q. Do you think that different drugs affected your memory or your cognitive processes, or that it's just a question of getting your system used to whatever.

A. I think that's a hard question. I think initially I might have been on three or four different medications. I was on a few of them for a number of weeks, and so it was hard to say. I remember when I first left the hospital, it was really difficult for me to concentrate.

Going to law school, returning to the community

Q. So then what happened after the paralegal course?

A. I got a job as a receptionist in law firm, and wasn't really sure I could take the pressure of being in the work world but found that I did pretty well. One of their paralegals left, so I was eventually doing the jobs of the receptionist, the secretary, and the paralegal. So I thought if I can handle this, I might be able to handle law school. So I applied to law school, and you know, kind of every step of the way I had questions about will I be able to do the work, will the effects of medication prevent me from doing the reading at night? Medication that I had been on would give me nausea occasionally so sometimes I would just have to lie in bed and sip on ginger ale.

Q. Where did you go to law school?

A. American University. After the first few months, I felt like, you know, I think I can do this. I can do it, I can do it.

Q. And who was encouraging you? Who supported you, and helped you?

A. Probably the person that really supported me, that helped me the most was the man I was seeing at the time. I think that relationship really helped me to socialize again and to realize that I could be a member of the community again. We started dating about a year after I was out of the hospital. I met him through this community kitchen that I had been working at, and for a long time I felt like I'm never going to have a relationship again. Who's going to want to be with somebody with a mental illness? But he was going to medical school, and so I thought, maybe someone who wants to be a doctor will understand.

I remember on our second date I had said something like, "Well, I've got to take my meds." And he said, "What do you take meds for, if you don't mind my asking?" I explained the situation and he said, "Wow, you seem like one of the most stable people I've ever met." And I said, "That's what Devacote will do to you." So, doing social things with him, and realizing I could be in a social environment, and I could make conversation and that he wasn't going to judge me for having a mental illness -- I think was the thing that really helped me. And we were together for a little over two years, and he was just really supportive and the biggest motivator I think, and the biggest help.

Q. What about your parents? Were they fearful, were they supportive? How did they react through all of this?

A. When I first went to the hospital I think they were very fearful. However, they have been very supportive through all of law school, but I think having a child go through what I went through is really frightening.

Q. But the fact that your parents were supportive of your going to law school meant that they really believed in you, and do believe in you. So you went through law school, and got out?

Mental Disability Rights International

A. That's right. My last year of law school I was working as an articles editor for The Human Rights Brief , a student-run publication at the law school, and an article came across my desk from this organization Mental Disability Rights International. So I thought, this is interesting: this organization works on behalf of the rights of people with mental disabilities and maybe I could work with them. I called Eric (Rosenthal, MDRI's Executive Director) in December of my last year in law school and proposed that we apply for a New Voices fellowship, which is a fellowship funded by the Academy for Education Development. They give fellowships to individuals to work at small organizations that want to foster leadership within the organizations, from traditionally under-represented groups. And so we applied for a fellowship, and that's how we got the funding to do the work that I'm doing in Latin America. We proposed a project in Latin America, which is an area of the world that I love, and had some interest in, had some experience working in and doing mental disability work.

Challenging assignment in Paraguay

Q. How did the work in Paraguay come about?

A. We had heard that the conditions in the institution were some of the worst in Latin America. We had heard specifically about the case of two boys who were detained in small cells, six by six feet isolation cells, naked without access to bathrooms and, that they had been in those conditions for a number of years. So we were involved in a return mission to Uruguay -- Uruguay is where MDRI published its first report on mental health and human rights about ten years ago, and Paraguay is just right next door. We planned to do an investigation mission there immediately afterwards. We went to the airport and we were told that we didn't have Paraguan visas and we couldn't go to Paraguay. So we had to go all the way back in from the airport and about an hour into the center of Buenos Aires to get visas that weren't going to be ready until the next day. But I said, I've come this far, I'm not going to just go home at this point. So I got the visa and the next day I went to Paraguay.

I saw the conditions in the institution and filmed them, and brought the film back to the board members at MDRI. As a result we decided to go ahead and file what's called a Precautionary Measures Petition in the Inter-American Commission on Human Rights. It's a petition that orders immediate measures be taken to protect the lives, physical, mental, moral integrity of the individuals. In filing a case, you have to exhaust domestic remedies and that can take who knows how long, and actually filing the case and getting a remedy could be years away. So this Precautionary Measures Petition is something where you can get almost immediate results. And in fact, within five days of filing the petition, the Commission ordered the government (of Paraguay) to take steps to protect the lives, and the physical, mental, and moral integrity of the 460 people detained in the institution.

Q. Were they all detained in conditions like in the video?

A. Yes.

Q. What was the "logic," so called, for why they had those boys in that situation? Or the rationale or whatever you want to call it?

A. Initially, the boys had been sent to the institution by judicial order, one when he was perhaps five or six and the other when he was seven or eight. When they first were detained in the institution, apparently they had one-on-one nursing. This was a deal that I think was worked out with the hospital's director and some Congress person, that they (the boys) were going to have this one on one attention, and that was the only reason why they were going to be allowed into this adult facility. But the money ran out for that individualized attention and so they were put into a ward with older chronic patients. The rationale (for putting them in tiny isolation cells) was either to protect them from the other patients or that 'they're violent and we couldn't let them out of the cages.' When I was there, it was kind of, "Well, we initially put them here because they needed protection from the other patients but now they're violent, and they rip up anything that you give them so we have to keep them in these cages."

Q. They didn't look violent in the video.

A. No, no.

Q. They looked very placid. Of course if you're confined and naked, it's kind of hard to believe that you can be terribly violent to anyone. I just can't get past those images, that somebody would do that. I admire you for not losing it.

A. Well.... It's difficult, it's definitely difficult work, and I remember being in Paraguay and just, you know...

Q. What did you feel, when you first heard about them, what did you feel?

A. Extreme dismay, extreme disgust. Unbelieving, just really incredulous that human beings were kept in these conditions. Not even zoo animals are kept in conditions like this.

Q. And they let you video this, or you had to do it surreptitiously?

A. No, they allowed us to videotape.

Q. I'm amazed. Is it that they don't get that it's wrong? Or do they think that it has to reach the outside world so somebody will come in and help because they are incapable of doing it themselves?

A. It's difficult to really know. I spoke with the Director of the hospital who's a psychiatrist and the technicians who work with him. They blamed it on lack of funds, but also, this was their rationalization, "well, we don't have the money for the specialized care that they need, but also they're violent."

Q. How old are these boys?

A. Now, they're probably 17 and 18. We had investigated a couple of other care facilities in Paraguay that could potentially take them. One is a facility run by the Catholic church which has far better conditions than the psychiatric hospital, it's clean, people are clothed, people appear happy, they are helping one another. It has a very familial environment. There's really a lot of love on the part of the staff and the residents all look alive. There was another home that had 14 individuals, and it was basically run by a man and woman with donations from the church and the parish community. And they were struggling. It was clean, everyone had their own bed. It was also a very familial environment, but with 14 individuals they were struggling to provide quality attention to everyone.

Q. So what happened to these boys?

A. Right now they've been transferred to another part of the hospital.

Q. The same institution they were in?

A. The same institution. The hospital has remodeled what used to be a nurses station, and so they actually have bedrooms so they are not enclosed in small spaces, they're enclosed in slightly larger spaces.

Q. They have clothes now?

A. They wear clothes when they leave their kind of ward or area. They apparently have 24 hour one on one care. When we returned in March of this year with an investigation team, they were clothed, they were eating a snack and the hospital staff told us there had been tremendous advances, that Jorge (one of the two boys) was now using the bathroom, he was learning to speak a few words, and they were kind of amazed at the progress that he'd made. But I went back and visited a couple of times when I wasn't escorted by the hospital staff, and they didn't have the one-on-one attention. The people that were supposed to be attending them were kind of sitting in the office, and they (the boys) were naked and they were sitting idly in their respective areas, their respective rooms. But I'm not sure that it's really the quality attention that the government claims that it is. Their conditions have definitely improved, they have access to bathrooms, they have showers....

Situation of mentally ill people in Paraguay

Q. Do you think that they're the exception or that they represent a significant percentage of people in similar conditions in Paraguay or other countries? I mean, I know the work Eric (Rosenthal) did in Mexico, for example, in an institution which was horrible too.

A. There aren't as many people who are in tiny cells, but the institution itself has similar conditions to other institutions that we've seen. People are admitted and either become chronic patients or cycle in and out of the institution until they become chronic patients and then end up living in the institution.

In Paraguay there are no community services at all. So when someone is admitted to the institution for the first admission, they might become stabilized on medication and then they'll be released but there's no place in the community that they can go to receive medications or to receive other supports that they might need. So after a period of time, they cycle back into the institution and this kind of cycling goes on until they become chronic patients and they end up living in the institution. We find that many people become what you could consider social patients, there's nowhere else for them to go. And this is what's happened with, I think, 60% of the in-patient population of a particular institution in Peru, and it's probably the same percentage in Paraguay.

Q. Are you doing work in Peru now?

A. We are.

Q. Where else?

A. Uruguay, and we're beginning a project in Argentina this year.

Q. And you're doing all of those, or involved in all of those?

A. Yes.

Q. And is this all being supported from the one grant from AED?

A. No. My salary is being supported through the grant from AED, but the actual programmatic work is a number of foundations that give either general support or specific support to our Latin America programming.

Envisioning the future

Q. What do you see, if you project five years from now, what do you see yourself doing?

A. I see us doing more of the same, but I would really love to see in the next several years some kind of, move to litigate a case to the Inter-American Commission on Human Rights on the rights of people with mental disabilities. I'd also like to see more recognition of the rights of people with mental disabilities, more enforcement on the part of the government of those rights. And I would love to see the Commission or the Inter-American Court establish a right to community integration for people with disabilities.

Q. What about the International Court of Justice (ICJ), have they ever heard a case dealing with the rights of people with mental illness?

A. The European Court has. The European Court has ruled on a number of cases, but I'm not sure about the ICJ.

Q. Do you see the humanitarian aid organizations getting more onboard with this, like Amnesty International and some of the other organizations that have in the past at least not taken a big interest in disability? Do you think it will ever get mainstreamed into the agenda of mainstream human rights organizations?

Current report on Argentina

A. That's something that we've been pushing for. This year, in the work in Argentina, we'll be collaborating with Human Rights Watch, so they're actually going to be co-authors on this report on mental health and human rights in Argentina. So that's our push -- to get some more attention and to get Human Rights Watch staff directly involved in investigation, and documentation, and report writing. So, we're hoping that that will at least spark some more interest within the organization to do documentation, to do human rights reporting on the rights of people with disabilities. I know that Amnesty International has done some work in, I think it was Bulgaria. They published a report in November of 2002, if I'm not mistaken, on psychiatric institutions in Bulgaria.

Q. How did this Human Rights Watch project in Argentina come about? Did MDRI go to them and get them onboard?

A. Yes.

Source of international interest

Q. Going back a bit, what spurred your involvement with international work as an undergraduate?

A. It was actually one of my best friends from high school who was taking courses at Cornell. I was still in high school and he was in college, he was a couple years ahead of me in school. He had been taking courses on U.S. history in Latin America, and he had come to dinner at my parents' house and told us about all the atrocities the United States had inflicted on people in Latin America, and just learning about that, hearing from him really made me want to learn more about it. And the more I learned about it, the more I wanted to.... I remember at one point, I told one of my university professors that I wanted to infiltrate the State Department and when I was the Director of Inter-American Affairs, I would change U.S. policy toward Latin America, and he laughed at me. I don't have any more fantasies about infiltrating the State Department, thankfully. So it was the history of U.S. intervention in Latin America was really got me interested in international work.

Q. And it has always been Latin America with you?

A. It has.

Q. Did you take Spanish?

A. I did. I took Spanish in high school and in college, but it really wasn't until I went to Guatemala that I became more or less fluent. Being immersed in the culture really helps.

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