Social and Political Advocacy in the Epilepsy Community. Elizabeth Borda Rivera

i Regional Oral History Office The Bancroft Library University of California Berkeley, California Social and Political Advocacy in the Epilepsy Community Elizabeth Borda Rivera DIRECTOR OF THE EPILEPSY FOUNDATION S WOMEN AND EPILEPSY INITIATIVE, 1996-2000 Interviews conducted by Ann Lage in 2004 Copyright 2008 by The Regents of the University of California

ii Since 1954 the Regional Oral History Office has been interviewing leading participants in or well-placed witnesses to major events in the development of Northern California, the West, and the nation. Oral History is a method of collecting historical information through tape-recorded interviews between a narrator with firsthand knowledge of historically significant events and a well-informed interviewer, with the goal of preserving substantive additions to the historical record. The tape recording is transcribed, lightly edited for continuity and clarity, and reviewed by the interviewee. The corrected manuscript is bound with photographs and illustrative materials and placed in The Bancroft Library at the University of California, Berkeley, and in other research collections for scholarly use. Because it is primary material, oral history is not intended to present the final, verified, or complete narrative of events. It is a spoken account, offered by the interviewee in response to questioning, and as such it is reflective, partisan, deeply involved, and irreplaceable. ********************************* All uses of this manuscript are covered by a legal agreement between The Regents of the University of California and Elizabeth Rivera, dated November 10, 2004. The manuscript is thereby made available for research purposes. All literary rights in the manuscript, including the right to publish, are reserved to The Bancroft Library of the University of California, Berkeley. No part of the manuscript may be quoted for publication without the written permission of the Director of The Bancroft Library of the University of California, Berkeley. Requests for permission to quote for publication should be addressed to the Regional Oral History Office, The Bancroft Library, Mail Code 6000, University of California, Berkeley, 94720-6000, and should include identification of the specific passages to be quoted, anticipated use of the passages, and identification of the user. It is recommended that this oral history be cited as follows: Elizabeth Borda Rivera, Director of the Epilepsy Foundation s Women and Epilepsy Initiative, 1996-2000, conducted by Ann Lage in 2004, Regional Oral History Office, The Bancroft Library, University of California, Berkeley, 2008.

Elizabeth Borda Rivera, 2004. iii

iv Discursive Table of Contents Elizabeth Rivera Interview History v Interview date: November 10, 2004 Audiofile 1 1 Family background, raised in Silver Spring, Maryland Onset of juvenile myoclonic epilepsy as a teenager, family concern, but never a sense of shame, importance of being open about epilepsy Interactions with the medical world and need to be a strong advocate as a medical consumer Recent medical problems with changes in medications to control her epilepsy As a youth, no experience of discrimination, no awareness of disability rights movement or the ADA First job in healthcare reform Job in government relations with Epilepsy Foundation, 1991 Describes working with other disability and healthcare reform groups, contrasts CCD and HCA Epilepsy Foundation well funded by pharmaceutical companies Leading role in EF s Women and Epilepsy Initiative, discusses developing and funding the initiative and interest of board member Lisa Lindahl Discrimination against people with epilepsy, personal testimony by people with epilepsy in Congress for health-care reform Difficulty getting celebrities involved in public service announcements Leaving Epilepsy Foundation in 2000, objections of her supervisor to her passion, heart-on-your-sleeve style Does not identify as a person with a disability.

v INTERVIEW HISTORY Elizabeth Rivera Elizabeth Rivera was interviewed for the Social and Political Advocacy in the Epilepsy Community project. Rivera, then Liz Borda, worked for the Epilepsy Foundation from 1991 to 2000, in government relations and as the director of its Women and Epilepsy initiative. Diagnosed with juvenile myoclonic epilepsy as a teenager, she brought both a personal and a professional commitment to the initiative, which sought to fund research and provide education on women with epilepsy. Rivera was interviewed on November 10, 2004, in her office at NAEA Education Foundation in Washington DC, where she had worked since leaving the Epilepsy Foundation. During the one-hour videotaped session, she discussed the onset and management of her epilepsy, and her family s and her own openness about her condition. With no social movement background, and no experiences of discrimination because of her epilepsy, she does not identify as a person with a disability, although she is well aware of the continuing difficulties, including stigma and discrimination, that many people with epilepsy face. She was known for the passion with which she approached her work and finally left the Epilepsy Foundation in part because of objections to her hearton-your-sleeve style. Rivera made no changes to the transcript of the interview. The Social and Political Advocacy in the Epilepsy Community project includes the perspectives of self-advocates, parents, and representatives of epilepsy organizations. Interviews explore the development of grassroots political activism, changes in the social and political climate surrounding epilepsy, and the role of the epilepsy community in the disability rights movement. Funded by a Rennie Grant from the University of California, Berkeley, it includes interviews with Tony Coelho and Elizabeth Savage, both closely associated with the passage of the Americans with Disabilities Act in 1990, and with others who have worked for education, employment, medical research, and civil rights for people with epilepsy. The epilepsy community project is an outgrowth of the Regional Oral History Office s ongoing series of oral histories on the disability rights and independent living movements, archived online at http://bancroft.berkeley.edu/collections/drilm/. The Regional Oral History Office was established in 1954 to augment through taperecorded memoirs the Bancroft Library s materials on the history of California and the West. The office is under the direction of Richard Cándida Smith and the administrative direction of Charles B. Faulhaber, The James D. Hart Director of the Bancroft Library, University of California, Berkeley. Catalogues and the collection of the Regional Oral History Office are available at http://bancroft.berkeley.edu/roho. The videotape of this interview session is available for viewing in the Bancroft Library. Berkeley, California June 30, 2008 Ann Lage, Interviewer

1 Interview #1: November 10, 2004 [Begin Audio File 1 Rivera E 01 11-10-04.wav] 01-0:00:00 01-0:00:18 01-0:00:20 01-0:00:33 01-0:00:51 01-0:00:52 01-0:01:35 01-0:01:38 01-0:01:53 01-0:01:55 01-0:01:58 01-0:02:02 Okay; we're recording and today is November 10, 2004 and I'm here with Elizabeth Rivera. Now when you worked for the Epilepsy Foundation you were Liz Borda? Is that right? Yes, yes, that is correct. We need to be clear about that. We want to start with some personal background just to see where you came from and what shaped you. So would you tell me about how you grew up and your family and all? Sure, sure; well, I was a family of five siblings; well, I had four siblings, four older brothers. I was the youngest your basic nuclear family. Right; did your parents both work? Well, when I was younger my mother, she didn't work as much. When I was real little I can't remember whether she worked. She did work at some point in time. She was a nurse. My dad is an attorney; he's actually a judge now. He worked during the Johnson administration; he worked in that administration in the Labor Department and then worked in private practice for many years, and now he's a judge in the Social Security Administration. So you come by your tie with Washington honestly. [Laughs] Through your family. Yes, I grew up in Washington right outside of Washington DC in Silver Spring, Maryland. So that's where I came from. That's my basic. When were you born? We should set you in time. Nineteen sixty-six. Okay, let's talk a little bit you have epilepsy yourself? Yes, I do.

2 01-0:02:04 Aside from your being an advocate? 01-0:02:07 Yes, yes, I 01-0:02:07 01-0:02:11 01-0:02:29 01-0:02:31 01-0:04:07 01-0:04:12 01-0:04:13 01-0:04:13 01-0:04:27 So how did that come about and how did your family deal with it? Well, I had my first seizure, I think I was about fourteen years old when I had my first grand mal or tonic-clonic seizure. I actually had been having seizures for a couple of years before that but I didn't know I was having seizures. What kind of symptoms? I have what's known as juvenile myoclonic epilepsy, in which you have two different types of seizures. One of them is called myoclonic seizures, which are essentially small jerks where you get a disorientation and small bodily jerks. They can be full body jerks or small body jerks. You don't lose consciousness. But they're known to occasionally graduate into tonic-clonic seizures. The second seizure then is the tonic-clonic seizure, which is the fullon convulsion where you lose consciousness. That's when we discovered that I had seizures when I had my first grand mal seizure. So I've had actually juvenile myoclonic epilepsy I think back in the nineties they discovered that it is genetically related in that there is a gene associated with that specific type of epilepsy. It's not necessarily an inherited type of epilepsy but there is an actual malfunctioning or a type of gene I'm not exactly sure how to describe it, but there's a certain gene, and there is something wrong with the gene. I see, not necessarily that you inherited it but perhaps it was damaged or changed Yeah, yeah. somehow. However, I had an older brother with epilepsy the oldest one did. He had a different type of epilepsy. He only had grand mal or tonic-clonic seizures, and he grew out of them, as they call it. Interesting; did he have them as a young child then?

3 01-0:04:30 01-0:04:55 01-0:04:59 01-0:05:44 01-0:05:49 01-0:07:09 01-0:07:24 01-0:07:51 01-0:07:59 Yeah, he had them when he was younger. He grew out of them when he was about twenty or so, and he only had, as I understand it, maybe about eleven in the entire span of the time that he had seizures, if that many. I think I only So you knew what was happening when it did happen? It was something your family was aware of? Yes, they were aware of it and they were familiar with it, plus my mother was a nurse, so she was familiar with it in that way as well. And he also had auras when he had seizures, so he knew that way before he was having a seizure. I did not have or do not have auras. My mother had an aunt from somewhere way back that had epilepsy, and that's all I know in terms of our family history. So there is some type of family history, but they're all different types of epilepsy, so it's kind of strange. Unknown, it seems; is that what you A lot is unknown about the causes? Yes, there is. There is quite a bit actually that's unknown although in the nineties they learned quite a bit more. The nineties was the decade of the brain, and so, as I understand it and that's when I worked for the Epilepsy Foundation, from 1991 until January of 2000. NIH [National Institutes of Health] labeled that the decade of the brain, and so I guess they poured a lot of money, more so than they ever had in the past, into the NINDS [National Institute of Neurological Disorders and Strokes] that institute's funding. And so more was learned about the brain and things associated with the brain. But the brain is a very complex organ, and there's still a lot to be learned about it. It's very complicated. So in terms of epilepsy there still is much to be known. Tell me about how your family handled it, sort of helping you deal with the fact that you had epilepsy, and your brother. I mean, what was the attitude about it? My oldest brother, by the time I had my first seizure, he's thirteen years older than me, or twelve, something like that; so by the time I had it he was gone and out of the house. But was it a big presence in your family? Was there concern or worry or shame or any of those things that you hear about? Absolutely no shame always concern because you know you worry about someone's well-being in terms of especially with tonic-clonic seizures, you

4 know if the person is in a place where they could be harmed due to the fall or in a car driving things of that nature. So [Laughs] my father, you know, I'm his baby; I'm his only girl. And every time he ever saw me have a seizure, whenever I would come out of the seizure he always had the exact same look on his face, and I knew immediately that I d had a seizure by the look on his face. It was almost as if he was about to cry because he was so upset that I d had a seizure, because he was concerned about me. It's always concern; it was never a feeling of shame, or anything like that. 01-0:09:23 01-0:09:29 01-0:10:15 01-0:10:16 01-0:11:30 01-0:11:41 Were you encouraged to be open and upfront about it with your schoolmates and what not or how was that? I've always been open about it simply because I feel it's necessary in terms of people not only knowing what it is, but it's an issue of safety, and so when I started working for the Epilepsy Foundation one of the things that I advocated for a lot was the necessity of being open about your epilepsy and because there wasn't there wasn't a lot of that at the time, believe it or not. It's called a hidden disability. Yeah, and people are very scared and understandably because there is a lot of discrimination even now, because people don't understand it. They think it's funny. I'll give you an example. I was recently with my husband, it was sometime this summer. We were at a movie theater, and I had a seizure during the movie, and there were some teenagers sitting next to us, and one of the kids started laughing, and one of the other kids sitting next to him hit him and said, That's not funny, you know. But there's an example of someone who doesn't know or understand or is nervous about it because he wasn't educated about it. I think it's extremely important especially to start young, educating them about it; that way they know when they get older it's ignorance that causes discrimination. So I've always advocated for it, and it has frustrated me. Even as a teenager though? I mean that's such a hard time I would think to have something like this come into your life when you're fourteen years old at that awkward time? Well, yeah; and I was with a group of girls when it happened and I don't know how they reacted to it. A lot of them were my friends, and so they were scared, certainly, because they didn't know what was going on. [Laughs]

5 01-0:11:56 01-0:11:59 01-0:12:57 01-0:13:13 01-0:13:16 01-0:13:18 01-0:13:34 01-0:13:36 01-0:13:36 01-0:13:39 01-0:14:06 And you yourself lose consciousness and aren't aware of what's happening; is that right? Yes, well, you know the way it happened when I had that first convulsion I had a myoclonic seizure first and I fell on my butt and when I was having the myoclonic seizures before I ever had the convulsions I thought I was really clumsy, because when I had those I would fall on my butt or whatever, so I just really thought I was clumsy. So when it happened when I had the myoclonic I just kind of laughed, and the girls that were there laughed at me or whatever, and they were like, Liz, you're such a goof. And then I had the convulsion, and I can only imagine [Laughs] how they felt after that. But to get back to the safety issue, yeah I feel really strongly about being open about it because I think it's a safety issue. So that's good. How about interaction with the medical world? Your mother being a nurse must have helped with that, but did you get the kind of guidance and treatment and medication that you hoped for? Well In your early years? Yeah; so far as I know it actually in the early years, yeah, it went well. I mean I was with my parents and they were always strong advocates for me. So when I got older I had to be an advocate for myself. You mean an advocate with the medical world? Yes. Well, how is what do you have to advocate for? Well, they have to make sure that the doctors are doing their job, and they're not, you know, they're not just saying okay you know, sometimes doctors won't listen to their patients. They'll just do it, and if you don't advocate for yourself they won't listen to you. They'll just say this is the way it is and you have to believe them. Is this in prescribing medication?

6 01-0:14:09 01-0:15:01 01-0:15:05 01-0:17:21 01-0:17:23 01-0:18:22 01-0:18:24 In anything, you know, and not all doctors are like that, but some of them are. For example, one of the things we used to hear when I was at the Epilepsy Foundation when I started the women's initiative was women would say to us, You know, my doctor doesn't believe me, that my hormones affect my epilepsy. That's an example. But anyway, when I was younger, of course my parents insisted that I get the best medical care possible, and they took me to Johns Hopkins to their neurological unit, and I saw one of the best doctors in the field one of the most well known, who actually was on the board of the Epilepsy Foundation at the time, John Freeman, so. And he prescribed you took medication to? Yes, and I was very well controlled over the course of my younger years even into, you know, for many years I mean I can't even tell you how many years I was very well controlled. Things started changing for me only really in recent years, I think in my thirties. And I had to change medications, and I started taking Depakote when they discovered that that was the best drug, really, for my type of epilepsy. It's also the worst drug if you want to have children. And when my husband and I got married we wanted to have children, so I decided to get off that particular drug, and I started having more of the myoclonic seizures, and I wanted to control those. And then I discovered I can't have children because I have blocked tubes. So we decided we'd try in vitro, but I wanted to get my myoclonic seizures under control. So last year I started a different regimen of drugs to try to get those under control, and as it turned out the regimen that I went on [Laughs] got rid of the myoclonic but I started having the other type, the tonic-clonic seizures. Oh, which are more? Uh-hm; which are worse, and I was having them more frequently and more frequently, and as the summer went on they started getting worse and worse and worse, and the drugs I was taking were affecting me cognitively, and I mean, it was very, very bad. I couldn't remember things. By the time I ended up going into the hospital it was a year ago; I was just thinking about it today in fact; a year ago this week I went into the hospital for a week to get video EEG monitoring to find out what was wrong, and I couldn't do simple math; I couldn't think of simple phrases, didn't know what they meant; I was just cognitively, I couldn't do anything. And it was drug related? It was the drugs. I was toxic.

7 01-0:18:29 01-0:18:31 01-0:18:53 01-0:18:56 01-0:19:25 01-0:19:27 01-0:19:27 01-0:19:29 01-0:20:34 01-0:20:35 01-0:20:42 01-0:20:43 Oh my God; that must have been very frightening. From the drugs so and I was having terrible seizures several a month, which for me was bad because I had not been having that many. And it was odd because it stopped me from having the other type, and then I started having you know the tonic-clonic seizures; so. Did the doctors cooperate well, and I would think you would be Yeah; and they felt really bad about it too. [Laughs] But I was kind of an interesting test case also, or case study. Case study I should say not test case but case study, so when I went into the hospital they slowly took me off the drugs that I was on. Because you do have to do it slowly? Yeah. You don't just stop? Well, actually I was on three drugs, so he immediately took me off of one of them and then tapered me off of the other. By the end of the week I was off the other and I was on one. And it was unbelievable the change in my cognitive abilities. So I stopped having the tonic-clonic seizures almost totally, although I still have them every so often, but I started having the other ones again [Laughs], which isn't a bad trade-off. But now I'm on two medications I'm not on any of the ones that affected me last year, but I'm on two medications, and now I'm not having either of the seizures as frequently. So I'd have to say I'm doing a lot better than I was last year. [Laughs] What a saga. It's hard to believe I was able to function at all because I was working the entire time through it all; so. Amazing. I would be at work, and the person who I supervised, I would have to go up to her and say what is it? What is it that I'm trying to say, you know, and I would

8 go to people what am I trying to say, you know, but I got my work done. It's amazing. 01-0:21:06 01-0:21:10 01-0:21:12 01-0:21:11 01-0:21:25 01-0:21:25 01-0:21:26 01-0:21:43 01-0:21:50 01-0:22:00 01-0:22:07 01-0:22:12 And did you have a supportive atmosphere? Were you working here then? Uh-hm. Not at the Epilepsy Foundation? Yeah; I was working here. I've been here for three years for three and a half years and they all knew what was going on, and yeah very supportive atmosphere; so. That's good. So. Let me take you back again a little bit to did you have any experiences of discrimination as you were growing up, or in college, or job-seeking, for that matter? No, not job seeking, because for nine years I worked at the Epilepsy Foundation; so. Were you involved in any social movements outside having anything to do with disability? Were you interested in the women's movement or? I was, before I started working for the Epilepsy Foundation I mean as you grew up, and in the college and all of that? Oh, well, when I was in college no, not in college well, actually yeah; when I was much younger I went to Catholic school, and I one time went to a right-to-life protest. I'm actually pro-choice now, but I was much younger then, and I I didn't know. I didn't really have any social, you know. [Laughs] I didn't have any, you know, knowledge of really what any of it is. So I was pretty much

9 01-0:22:57 01-0:22:58 01-0:22:59 01-0:23:05 01-0:23:08 01-0:23:10 01-0:23:14 01-0:23:17 01-0:23:24 01-0:23:25 01-0:23:27 01-0:23:34 01-0:23:59 01-0:24:10 01-0:24:13 You weren't politically active or--? No. Okay; now were you aware of the Americans with Disabilities Act and the lead-up to that or? No, not Disabilities rights issues, I mean, I'm talking about. Not until I started working for the Epilepsy Foundation. Okay, so you didn't come with a background in that and then Healthcare reform, I was; before I started working for the Epilepsy Foundation I was very involved in healthcare reform. What did you study in college? English. English, and then how did you get into healthcare reform? It was when I started with my first job. I was a field canvasser. I worked for Maryland Citizen Action Coalition, and I mean that's really grass roots. We went door-to-door fund-raising basically for healthcare reform and those types of things, and that's where I got my start. Now, was it just a job and that got you interested in healthcare reform, or was it something that grew out of the fact that you had epilepsy and that was somehow related to healthcare? I think it was you mean my healthcare reform? Yes, how did you get into the healthcare reform?

10 01-0:24:16 01-0:24:51 01-0:24:55 01-0:25:07 01-0:25:08 01-0:25:10 01-0:25:20 01-0:25:22 01-0:25:21 01-0:25:22 01-0:25:29 01-0:26:33 Well, it definitely grew out of that job. I think it must have grown out of that job, but I think my just my whole social kind of rights-type of beliefs. I think it was almost innate; it was there and I didn't realize it until I got that first job. Because your father had been politically active and and? Oh, he was very politically active. He actually was there on the mall when Martin Luther King gave that speech. Oh, that's historic. Yeah. Okay; so you but had healthcare been an issue or a concern? Don t people with epilepsy sometimes have difficulty being covered? Yes, absolutely. For insurance? Absolutely. So was that something that was sort of in your mind as a potential problem in your life? No, because my family always had my dad always had good healthcare. I mean, he always made sure that we did; my dad had a very, very tough life growing up, and he always made sure that his family had what he did not. So I never had a problem with that, and as soon as I got out of college I had a job, and so I was always covered. I mean the one thing that I had to which changed later in later jobs, but the only thing that I had a problem with was I had to wait because of pre-existing conditions. I had to wait a few months to get fully covered, but that changed later on, in later jobs. I didn't have a problem with that. I think there must have been a law that passed later on that they couldn't discriminate against pre-existing conditions anymore; so. Because the ADA itself didn't deal with health insurance.

11 01-0:26:38 01-0:26:40 01-0:26:45 01-0:26:51 01-0:26:55 01-0:27:44 01-0:27:47 01-0:27:47 01-0:27:52 01-0:27:56 01-0:28:00 01-0:28:05 01-0:28:10 01-0:28:12 Uh-hm, yeah. So the ADA and all that wasn't something that was big in your horizons or? No, not before I never heard about it until I worked for the Epilepsy Foundation. Okay; let's talk about how you got this job with the Epilepsy Foundation and why. You'll never believe; it was accidental. [Laughs] I was looking for jobs. I saw this ad in the newspaper. I didn't even know who it was with, because it didn't say, and when I called them up that's back when you called for a job for a job interview because there was no Internet. It was the Epilepsy Foundation and I was, like, Wow; so I sent in a resume. They said come in for an interview. It was a legislative assistant job because I thought I wanted to go into government relations, and I wanted to work my way up in that area advocacy. Lobbying then? Uh-hm; and But you didn't care in what area? You just were looking for that type of job? No, yeah, yeah; and so I got the job. Did you put forth that you had epilepsy? Oh yeah, and I think that's part of the reason that I got the job. [Laughs] Yesterday I interviewed Liz Savage, who must have left about that time. Oh yes, Lizzie. Yes, she did. Was she gone by the time you?

12 01-0:28:14 01-0:28:16 01-0:28:18 01-0:28:22 01-0:28:26 01-0:28:32 01-0:28:44 01-0:29:02 01-0:29:08 01-0:30:13 01-0:30:19 01-0:30:43 Yes, she had just left. But you've gotten to know her since, or? No; I never really got to know her no. You sound very familiar Lizzie. No, definitely no; she's very well-known, though, in the disability community; so. Well, had you ever had any dealings with the Epilepsy Foundation or their affiliates in the course of your own growing up? Not in growing up, no. I may have called the EFA well, it was known as the EFA when I started working for it. Maybe called them once for information but no, I never had any dealings with them. So what were you assigned to initially? You must have been fairly low on the totem pole starting out. Uh-hm; I was legislative assistant and I just was basically support staff for it was four people including myself in Government Relations, and I was basically a support staff person. So I did what they gave me to do. As I grew more in the job and I would ask them for stuff to do also but as I grew more in the job I would go out more and sit in hearings and stuff like that on the Hill, or I would go to meetings, different coalition meetings. They cut back on the department unfortunately, so when one of the people left I took her place and went to a lot of things that she had originally gone to, but you know I was pretty low on the totem pole, as they say. How did you what were the concerns that the department was dealing with? What kinds of legislation at that time? Well, it was healthcare reform type stuff, Family Medical Leave Act, employment issues, let me see the signing of the ADA had just happened when I came on board. Oh, I know; I did the Winning Kid stuff. And what was that?

13 01-0:30:44 01-0:31:14 01-0:31:22 01-0:31:35 01-0:31:37 01-0:31:38 01-0:31:40 01-0:32:33 01-0:32:35 01-0:32:43 01-0:32:45 That really belonged in the PR Department but for some reason we had it because the Winning Kid went to the White House so we would take the Winning Kid to the White House. It's like the Poster Child but we didn't call them the Poster Child. What else did we work on Social Security, anything that affected people with disabilities. Yeah, and you mentioned coalitions. Were the coalitions that came together for the ADA still in place? Oh yeah, they work on things together. Did you talk to anyone in CCD, the Coalition for what is what is that? Did Lizzie mention anything about CCD? Not specifically, no. Coalition for Is it the consortium [Consortium of Citizens with Disabilities, CCD]? Yes, Consortium for something of Disabilities I can't remember what it means and then there's the Healthcare Health there's HCA. I can't remember what all these acronyms mean; it's been so long. HCA, which is a coalition for healthcare reform and healthcare issues; those are the two big ones. CCD is the disability related coalition, and they would do employment, Social Security, they worked together on ADA and they would also do healthcare reform also. So those are the two big ones that I can think of. And those included United Cerebral Palsy? CCD would be Cerebral Palsy The Arc, probably. The Arc, yeah, you know any of those 01-0:32:50 Was DREDF [Disability Rights Education and Defense Fund] involved? Do you know DREDF?

14 01-0:32:52 01-0:33:01 01-0:33:07 01-0:33:23 01-0:33:25 01-0:33:32 01-0:33:34 01-0:33:46 01-0:33:51 01-0:34:38 01-0:34:44 01-0:34:45 01-0:34:46 01-0:34:53 Probably yes; God, it's been a while I'll tell you. It's hard for me to think of all the names. Just any Paralyzed Veterans of America, were they still involved? They were so involved in the ADA. Uh-hm; any of the ones who would be discriminated against for various reasons, in employment, or have issues with Social Security or Were they working out ADA regulations and? Hearing impaired, the blind The American Federation of the Blind? Yeah; no, they probably started before ADA. Did you have some sense of what those coalitions were like? Yeah; I went to meetings. They were very different than the HCA. The way I kind of viewed them was CCD was more of a kind of although they were big organizations in the disability community they were more of a, I don't know, a grass-roots type advocacy, whereas the HCA was, well, it was healthcare reform, and they were more of the big money type of health organizations. I don't know if that makes any sense. No, I think that's a very good distinction. What kind of big money organizations would that be? The Diabetes-- I see. Some of the disability organizations would be part of that. I mean epilepsy Where did that fit in?

15 01-0:34:56 01-0:35:02 01-0:35:05 01-0:35:32 01-0:35:46 01-0:35:48 01-0:35:55 01-0:36:40 01-0:37:14 The Epilepsy Foundation gets money from pharmaceutical companies, you know, so they are big money. So it's a well-funded? Uh-hm; well, they used to have money problems like any organization, but you know pharmaceuticals are well let's face it; they've got a lot of money and there's nothing wrong with that. I mean as long as you can fund programs that help people with epilepsy, that's important. But you know places like Diabetes [American Diabetes Association] have a lot of money for research and other programs. Would the funding of let's just take the Epilepsy Foundation affect the programs that you could sign onto? I mean I could see that pharmaceutical companies, certain kinds of healthcare reform would not be on their agenda. No; you mean in terms of? You know, were you discouraged from maybe more radical forms of healthcare reform? No, uh-um; no, Government Relations is totally separate because you don't fund government relations. That's through sponsorships. I mean that's totally different. Government Relations is always subsidized by an organization. I mean, that money comes out of membership or something like that. Funding for programs from places like pharmaceutical companies fund specific programs, like the women's initiative. Well, let's talk about how you moved into the Women with Epilepsy initiative. That seemed to be something close to your heart. How did it get started? Well, one of our board members, Lisa Lindahl, or I guess she's a former board member now she also has epilepsy was very passionate about the issue because she had felt that she had several issues related to the fact that her epilepsy was affected specifically by her hormones being associated by the fact that she was a woman. You know, hormones that men did not have were affecting her epilepsy, so personally it was an issue for her. So she wanted to see something done; she knew that if it's affecting her it's got to be affecting other women.

16 01-0:38:09 01-0:38:11 01-0:39:34 01-0:39:37 01-0:41:18 01-0:41:30 01-0:41:55 01-0:41:59 Had you felt this yourself? Yeah, well, I definitely think there's a pattern in my seizures, specifically in my myoclonic seizures, and she also knew that doctors didn't believe it; they weren't listening to patients, and both the OB/GYNs and the neurologists were saying, Nah, that's not the case; it's not happening, and there wasn't enough research going into it. At one point there wasn't any research going into it, so she was very passionate about it, so when she was on the board she said, We've got to do something about this, and finally she bugged the board enough that they said, Okay, we'll look into it. So they dedicated one staff person, me, to start doing a little research on it. So I started doing a little research on it as much as I could find and I got very passionate about the issue also for obvious reasons. I'm a woman, I have epilepsy and I was hearing from women, you know. I was doing informal surveys, you know As part of your research you did some? Uh-hm, of women with epilepsy, and finally we had this task force of people for a weekend, we got together, which included both men and women, professionals, experts in the field of epilepsy. We even brought someone in from outside the epilepsy field, who was a woman in we tried to have diversity and so we had someone representing the, I think it was the Hispanic community, and I can't remember if we had someone representing like an OB, or a women's organization, or something like that. So we had a weekend where we put together a report. It was a pretty lengthy report which had recommendations in areas that we felt needed to be addressed, from PR issues, to issues of information and public information that needed to be out there, to professional education and public education areas where we could get funding, all kinds of things. Was this unusual for the Epilepsy Foundation to kind of draw together and get the opinions of people with epilepsy, to help shape the programs? Well, let me see, I think that meeting was in '94. I had been there since '91. I hadn't seen anything like that in my time there. I don't know whether there had ever been anything like that before, so as far as I know it didn't happen in my three years there. Were your co-workers in your department, did any of them have epilepsy? No.

17 01-0:41:58 01-0:42:00 01-0:42:09 01-0:42:16 01-0:42:19 01-0:42:25 01-0:42:37 01-0:42:39 01-0:42:46 01-0:42:58 01-0:43:15 01-0:43:21 01-0:43:49 01-0:43:56 Many of the people on the staff? There was only one other person in the organization that had epilepsy; it was the director of the Affiliate Services Department. I just wondered if that brought a particular passion and also a new direction for the foundation. You mean the meeting? The meeting, but also your outlook, and the outlook of Lisa Lindahl? Well, I certainly tried to give it because I was a very passionate, heart-onyour-sleeve type person, and people knew it. Mine was no secret. [Laughs] Was that well received, your passion? Sometimes sometimes not. [Laughs] It all depended. Well, how does the organization work? Is it very staff-directed, or does the board typically have a lot of influence? The board has quite a bit of influence. Staff, when I was there it was very influenced by the board. So an interest among somebody on the board could take hold? Yeah, definitely; but you know I think there was also some partnerships that grew; partnerships between staff and the board grew over time while I was there. We tried to develop that more. So I was very focused on the initiative, so it Yeah; well, tell me more. I interrupted your story about how the initiative developed, growing out of this meeting you had. Well, from that it took two years before we really even had any commitment to funding for it, so we didn't have really anything. We did not have a program after that for two years, so we worked on that very hard, to put together

18 01-0:44:21 01-0:44:24 01-0:46:25 01-0:46:32 01-0:47:11 01-0:47:15 01-0:47:21 01-0:47:24 01-0:47:25 put together the funding? You were instrumental in that as well? Yeah, I worked with the Resource Development Department. I developed a proposal that had six prongs to it. I think it was six. It was public information, professional education, public education well, there was this one thing here, an affiliate pilot program where we would provide money to the local affiliates so they could develop their own program, a PR campaign where we developed a PSA that's from the PSA (points to a photograph). And we did a survey of professionals; it wasn't a research type, it was a very what's the word? an informal survey, basically. We went to various I traveled so much when I was with the Epilepsy Foundation. We would go to women's health organization meetings, or I should say not women's health but like OB/GYN society, professional outside the epilepsy community meetings and survey their health professionals to find out what their awareness was and within the epilepsy and neurological community so we could develop a piece to educate the community on what the awareness level was of professionals. Well, was there new research that showed that there was this connection, that women had a different response to epilepsy? Yes, yes, yes much more so, and that was one of the other areas we wanted to fund research, although we didn't get a lot of money for that because that costs that's a lot of money right there. So there were a lot of aspects to that proposal, and Glaxo Wellcome, which is now [GlaxoSmithKline] I can't remember the name now because Glaxo Wellcome when I was working at the Epilepsy Foundation funded the program in its entirety. And did you sell them on that idea, on funding it? Yeah, that was fun. I liked that. That's what I want to go into is fund-raising. [Laughs] Ah, well, how did you approach them? This is a pharmaceutical company, I'm assuming. Uh-hm. How did you approach them on something like this, which?

19 01-0:47:29 01-0:48:30 01-0:48:32 01-0:48:53 01-0:48:55 01-0:49:12 01-0:49:17 01-0:49:24 01-0:49:26 01-0:49:33 01-0:49:36 01-0:49:39 Well, they were interested in women's issues or funding a women's program. They had an anti-epileptic drug. Lamictal is the drug they developed that they sell. And they were interested in funding a women's program, and so they approached us, we approached them, they liked our program, and so as long as we had some type of mutual aspect in it that would help get their name out there and make them look good basically, then they were willing to fund it. And like I said, they didn't fund all aspects of it, like the research, because that doesn't really get their name out there as much. But it might have developed new drugs. Uh-hm, yeah; but they have so much money they can do the research themselves. So they took the bait, and they liked the program, so they funded it, and they continue to fund it even now. So it's an ongoing program? It's not something that? Yeah; they're still doing the program, and that's very exciting, you know. I'm very proud of it. Actually, one of my friends who still works there is now directing the program, so. Have you see a change in women's awareness, women with epilepsy's awareness as a result of the program? I don't know because I don't know very many women with epilepsy I don't know any women with epilepsy really. It's not like there are groups? No, no; there isn't like I mean I don't go to any self-help groups or anything because I don't really feel that I need it. Are there self-help groups for women with epilepsy? Specifically for women or? Or just people with epilepsy?

20 01-0:49:40 01-0:50:24 01-0:50:27 01-0:50:28 01-0:50:28 01-0:51:02 01-0:51:04 01-0:51:07 01-0:51:11 01-0:51:22 01-0:51:24 01-0:51:35 I know there are self-help groups out there. I don't know if there are very many, but again I don't go to them because I don't really feel like I need to. I don't like I said I've never really been discriminated against for it. I've always had support. My husband has always, I mean since we've been married, has been a great support system, but even before that in my work I always had support. At home with my family I always had support; there's never been a problem for me. It sounds like you're lucky, or times have changed. [Laughs] And there's more acceptance. Yeah; I don't know. I mean, I think in part that I've been blessed, because through my work at the Epilepsy Foundation I met so many people who had so many problems, be it discrimination, be it problems because of health insurance, who nearly lost homes, some who did lose homes, some people who lost their children due to the epilepsy not because of health insurance problems. So you did come in contact with a lot of people with epilepsy who had lifechanging? Oh yeah, absolutely, absolutely. How would you meet them as part of the Epilepsy Foundation? Most of those people I met through my time in Government Relations, because we needed people to testify I see. And that's usually what we had people to testify or speak to members of Congress and come down, so I was involved in a lot of that too. I see; so just tell me a little more about how that worked because I know that was part of the ADA strategy, to bring in people with their stories that were affected.

21 01-0:51:46 01-0:51:53 But we also did that for healthcare reform, which was what I was more involved with. Again, I wasn't involved with ADA. I was involved with healthcare reform. Right; I know but the personal story to members of Congress is helpful? 01-0:52:00 Oh definitely, yeah, absolutely; and we had great people testify; so... 01-0:52:07 01-0:52:13 01-0:52:55 01-0:53:07 01-0:54:05 01-0:54:09 01-0:54:09 01-0:54:13 And was there somebody in the foundation who organized that kind of work or did you all? We all did. You know, an affiliate usually was the one who found the contact because that's really where it would start is the person would go to the affiliate and then the affiliate would let us know about it, and that's usually how we got the contact. And unless the person sent us a letter about it or called us and then we got a contact that way, but that's normally how it happens you find out that way, either it's an affiliate brings the person to us or they contact us directly. Okay, were there any particular difficulties with the initiative that you'd want to mention stumbling blocks or things that you didn't get accomplished that? Well, while I was there I would have liked to have seen more research funded. I also would have liked to you know, we developed this PSA [public service announcement] and PSAs were really hard to get on the air during normal hours unless you have someone who is well known. And I would have liked to have someone who is well known in the PSA; there are people out there who have epilepsy who are afraid or ashamed to let the world know that they have epilepsy, and I think that's a shame, and I'm sure there are plenty of women out there who do. People who may have some celebrity status? Yes. Did you approach any that turned you down? Is that how you know this? Well, we don't know and well, actually let me see, one woman died, and we're not sure. We think it was epilepsy related but they won't tell us or they

22 won't admit it if it was Mariel Hemingway [It was Mariel s sister Margaux who had epilepsy and died ed.]. Was it Jackie Joyner or [it was Florence Griffith Joyner who had epilepsy ed.] one of those I don't know if it was her, but one of those women died. They have had some famous people come out and talk about epilepsy but no women. 01-0:55:00 01-0:55:10 01-0:55:16 01-0:55:32 01-0:55:49 01-0:55:53 01-0:55:55 01-0:56:05 01-0:56:07 01-0:56:07 01-0:56:21 01-0:56:23 01-0:56:28 01-0:56:35 So that is a problem then? I mean, it is still a certain stigma? Oh yeah, definitely; but What was the thrust of your public service announcement? Was it aimed at women with epilepsy or at the medical community? Or something else? Well, I'm trying to remember [Laughs] I think it was the public in general, yeah. I see; for just education, and understanding? Yeah. Okay; was Tony Coelho part of your life at the Epilepsy Foundation? Did he get involved with this initiative? Oh yeah oh, in the women's initiative? Uh-hm. No, no; not in the women's initiative, but he was definitely a part of the foundation. In fact, I think he's going to be the next president now Or chair? Or whatever they call it, from what I've seen on the website. But would he have an ongoing relationship with the Governmental Relations Department? In the past, you mean?

23 01-0:56:35 01-0:56:37 01-0:57:10 01-0:57:13 01-0:57:16 01-0:57:28 01-0:57:38 01-0:57:44 01-0:58:16 01-0:58:20 01-0:58:23 01-0:58:26 When you were there. When I was there, he kind of stepped out of it for a while when he was having some of those problems in the past, but while I was there he did speak; he did kind of re-involve himself very slowly and did some public speaking for us, which was always very exciting because he s a great speaker. So, yeah, there was a little bit of that. So there's someone who has been a spokesman, for sure? Oh yeah, definitely. Okay; well, I think we're fairly well you know, I think we've covered quite a bit. Tell me how you happened to leave the Epilepsy Foundation. That's not a good story. [Laughs] Well, my direct supervisor and I didn't get along so I chose to leave and I had Were there philosophical issues or was this more of a personality? It was personality, I think. And you know, that heart-on-your-sleeve thing that I spoke about earlier? She was one of those people who, as you had mentioned, you asked if there was anyone who didn't like that; she was one of those people who didn't like that. So [Laughs] Well, how did the heart-on-the-sleeve manifest itself? I've always been that way; I've just always been that way. But I mean how would it come out in your work? Oh, I don't know; I'm just very passionate. I'm just very passionate and some people say I mean I'm loud. I just that's just the way I am. I talk loud. I don't know; that's the way I am, and some people have a problem with it. So anyway that's why I left. I fully intended on going back to school and trying to get my master s degree, but then I got married, and other things happened in life, and so I decided I'd better go back to work, and I got this job and

24 01-0:59:08 01-0:59:12 01-0:59:27 01-0:59:29 01-0:59:31 01-0:59:41 01-1:00:03 01-1:00:15 01-1:00:36 01-1:00:37 01-1:01:11 And is this a job in legislative work also? No, I'm in education now professional education, or continuing professional education. This is different. I work for a professional membership association, so this isn't as exciting. You probably don't have that passion? No. [Laughs] You know we're just about to run out of tape so to me it's a good place to end, but is there anything else that we've missed? I can easily put another tape in. No, I think I think we've done a good job of covering it all and just I was very happy at the Epilepsy Foundation. I'd like to get back into advocacy type of work some day. I guess one thing that you just is there any in any way that you identified with the broader disability rights community? Do you think of yourself as a person with a disability? No, it's never been a disability for me. I mean I wouldn't mind getting involved with the disability rights community. Anything that helps people, anything that makes me feel as if I'm giving back to the community. But it's not an identity that you have? No, I've never felt like I have a disability. Although it doesn't bother me that epilepsy is considered a hidden disability because it is, you know. I mean, for some people it's a very hidden disability, and you know, in a way it's disabling for me as well. But I've never really considered myself a person with a disability; so. Okay; well, that's a good way to finish off.