Enhancing Self-esteem in Women with Disabilities November 10, 2003 Presenters: Rosemary B. Hughes, Ph.D. and Heather B. Taylor, Ph.D. Sponsored by: NIDRR through support of the Research Information for Independent Living (RIIL) and the Rehabilitation Research and Training Center on Managed Health Care and Disability ROSEMARY: Good afternoon. This is.... We're not sure if we're connected, but we probably are. This is Rosemary Hughes and Heather Taylor and we are so delighted to have this opportunity to do this Web cast today. Peg Nosek was supposed to be here, but she had an illness, a respiratory infection. She is getting better. She told me to be sure I let you know that she is recovering well. She may possibly try to come in here toward the end. Anyway, we have lots to share and lots of what we're sharing is congruent with some of the good information that Peg would share as well. So basically, we'd like to start out by quoting Dr. Peg Nosek, who is the founder and the Executive Director of the Center for Research on Women with Disabilities, and she said about one of the early studies in regard to self- esteem, "if you truly believe you are a woman of value, you gain tremendous strength to forge your way through the most stubborn of barriers." I'm as I said Rosemary Hughes, I'm the director of CROWD, and I have a variety of duties and research of my own going on and all kinds of administration and so on, but my-one of my primary interests is psychosocial health of women with disabilities. And we have done a couple of studies, really important studies, on self-esteem in-among women and we'd like to talk about two of those today. But before we go on, we have another presenter here. HEATHER: I'm Heather Taylor and I'm the director for research at CROWD and I've also been very interested in psychosocial issues for women with disabilities and have been working closely with Rosemary and Peg on self-esteem here at CROWD. ROSEMARY: And the way we'd like to structure today's program is first of all talk about one of the studies that we did that was based on our early sexuality and reproductive health study. The data from that study and that will be something that Heather will talk about. And most currently we just finished up a study in the field on self-esteem and it was an intervention, a group intervention that we conducted with some wonderful partners in the centers for independent living. And we'll go into quite a bit of detail on that because it was just a wonderful experience and actually resulted in some positive findings with some really promising results. And then we'll talk a little bit about where we intend to go in the future. And we do have our plans for that as well. Just by way of background, Heather, do you want to talk a little bit about how we define self-esteem? HEATHER: Yes, first of all, we asked the question what exactly is self-esteem, and there are many different things that make up self-esteem but the first one is really an attitude toward one's self. And you can think of that in terms of asking yourself, do I like or dislike myself? What do I think about myself? Then there is the value placed on one's self concept, am I deserving or not deserving of respect or love or worth, an assessment of one's worth, am I worthwhile? Am I a worthless person? And the assessment of one's competence. Am I capable of giving or receiving love or am I not capable of that. So what do we mean by enhancing self-esteem? Basically, it's to increase it, to improve it, to add to our self-esteem, and that is primarily what the focus of our programs have been on, our self-esteem programs. Then the research in general has listed self-esteem and some things we know that basically improving self-esteem takes a lot of hard work. It is not-not something easy. It is a process, and it's a lifetime process, not a single event. It takes a lot of time and small changes also have a great effect over one's lifetime. So starting small and building are wonderful ways to start enhancing and improving on our self-esteem. ROSEMARY: That's great. And Heather was talking about attitudes about one's self and the value placed on self, and so much of that also we know from the literature is related to what other people think of us or how we perceive other people to think of us and among women with disabilities, the cultural devaluation factor is especially critical. It's what we think of ourselves, but we get a lot of that from-and this is true way back in the early literature on self-esteem, from what we get through the eyes of the other person and just basically like the looking glass self, looking into the eye of another and seeing ourselves from their perspective. So we've done some work around that as well. Just in general, self-esteem in women with disabilities- disability itself can be a stigmatizing phenomenon and its effects can be profound when combined with women's self-evaluation. Yet we also know that clinical experience and research says that many women who acquire disability at birth or later develop and maintain high levels of self-worth and self-regard. So, let's see, we'll talk now a little bit about how- HEATHER: How we got started. And basically, we started to be interested in this in our study on sexuality and reproductive health on women with disabilities. And at that time a we interviewed a small group of women and learned about factors that affected how they felt about themselves, such as messages and experiences related to their childhood, to their families, their school and to their relationship with their medical professionals, and all these things have such a large impact on our self-esteem. Based on the information from this group of women, these women, we constructed a survey that asked respondents about themselves such as their-- basic information such as age, education, disability severity and then also specific information about their self-esteem, perceptions of how others see them and any sense in which they feel socially isolated, which is important and we'll talk more about that. In addition, we asked if they were involved in intimate relationships which play a large role and if they're employed, if they participated in health promoting behaviors such as not smoking, eating well, getting enough sleep, things that would indicate kind of a sense of value that these are important to myself and my health. And this survey was given to nearly a thousand women with and without disabilities nationwide. The findings from that data and that study showed that comparing women with disabilities to women without disabilities, we found that women with disabilities had significantly lower self-esteem, lower perceptions of how others saw them and greater social isolation. The women with disabilities also had significantly less education than women without and lower rates of salaried employment, which we would often expect to be related to their disability. They also were more over protected during their childhood by their families and had poorer quality of their intimate relationships. High self-esteem was found in women with disabilities who were older and had less severe disabilities and these women also tended to describe a more positive school environment, be less over protected by their families and to have more affection in their home during childhood. Women who described less over protection and more affection while growing up were also more involved in school and social activity as children. We were seeing a pattern of being more active, more social, less protected and those kinds of things really impacting self-esteem. As adults, these women attained more years of education than women who received more over protection and less affection. The same developmental factors I mentioned, more school and less over protection and more affection, were associated with better self-esteem and less social isolation as adults. Now, women who were younger, had less severe disability, and had less parental protection and had greater affection in the homes growing up were more likely to believe that others viewed them positively. Interestingly, women with more years of education were more likely to believe that others saw them negatively. Greater self-esteem--thinking that others thought more highly of them and being less socially isolated--increased the chances that a woman would describe have a satisfying intimate relationship. In contrast, the severity of someone's disability did not predict whether a woman had a satisfying relationship, so it really appeared to be more related to self- esteem than on their disability, which is very good for us to know. Although the three childhood factors I keep mentioning, the school environment, less over protection and more affection doesn't directly predict being in an intimate relationship, they did predict being less isolated. So thinking others regarded them more highly and having higher self-esteem. High self-esteem was strongly related to being in that satisfying intimate relationship as I indicated earlier. In women with disabilities, those with higher self-esteem were more likely to engage in (health promoting behavior such as exorcising, not smoking, getting enough sleep), once more, indicating that feeling that you're worthwhile and having a good attitude toward yourself also encouraged those health promoting behaviors. ROSEMARY: Okay, well, gosh, that was the first study, and again that was based on the data from our sexuality and reproductive health survey and in that study we recruited about a thousand women and compared the responses on several questionnaires, including the questionnaire on self-esteem. We gave that to about half of that- about nearly 500 women with disabilities and those women shared a copy of the questionnaire-this is how we modeled the study-with a friend of theirs who did not have a disability. So women with and without disabilities were compared on these measures. That was the basis for the information that Heather was sharing. Now I'd like to talk with you about a study that we did where we developed a self-esteem workshop for women with disabilities and implemented those and studied those in the centers for independent living as I said before. First of all, what we had to do-and we found this very, very much fun really. Except that we had some decisions and we had to have somebody outside of us rank the centers for independent living to see how they met the criteria; but basically we sent out a letter to 579 programs. And out of the 579 CIL's, only 38 responded to our letter, where we were asking them if they were interested in expanding their services to women with disabilities and including a focus on self-esteem and so 38 wonderful people responded and the results were that five were selected to be the sites to participate in the study. We had to make sure that the sites were bona fide independent living centers and that they had reported a successful history of offering support groups for persons with disabilities and, like I said, interested in expanding their services to the needs of women and that they would identify a center for independent living staff counselor with a disability who would be actively involved in the implementation of the study. We were kind of surprised in some cases that some centers do not have counselors with disabilities. That was kind of a surprise to me. So the counselor- the CIL's were identified and we developed a workshop and that took a lot of time going through all the literature on self-esteem and based on lots and lots of other information developed a six- session workshop that met on a weekly basis. And I'll talk about that in just a little bit. But first of all, that workshop was pilot tested here in Houston at the Houston Center for Independent Living. Sandra Bookman, as she always does, collaborated with us in putting that together and those results were promising and so we felt really good about the pilot study, and then moved forward. We asked the directors of the centers for independent living that were selected, and I'll tell you who they are. You might want to know. The centers that participated were ABLE in Phoenix, Caring and Sharing in St. Petersburg, Independence Center in Northern Virginia in Arlington, Independent Lifestyles, St. Cloud, Minnesota and Summit in Montana. Now, we asked the directors of each of those collaborating centers to select two women with disabilities to co-lead the workshop. We asked that one be a CIL staff member and the second a lay leader, but both women with disabilities. And we wanted to do that because, you know, we're very grounded in the philosophy of IL that role modeling and peer modeling and peer advocacy is very important. And so we did that and then we also used some travel funds from the grant. The grant, by the way, the study was funded by NIDRR and it was a three-year study, and we had travel money in there for the leaders--one leader from each of the centers to come to Houston where we worked together on the training elements for the workshop. And that was wonderful, at least from my perspective, but we like those kinds of things. We talked about, you know, group ethics and the content of the program and how to go about recruiting and enrolling participants and kind of the weekly procedures and checking with us and us checking with them and back and forth conversation like that and even a handbook. Now, we had developed a pretty comprehensive handbook and had scripts for each of the workshop sessions. The reason we use scripts isn't to diminish any person's creativity in presenting like that, but it keeps the study uniform across all the sites, and so we did that. And we also asked each site-each CIL to identify a mental health professional that either is on their staff or that they knew in the community so that if there happened to be any psychological crises during the study, that they could contact them and they definitely could contact me and Peg and other people working on the project. The sites-the CIL's were paid an honorarium, I think it was a thousand dollars for that study for usage of there facility, for the use of their facilities and other resources. So anyway, what did we go about doing-I guess I've been rattling paper. I'm sorry. I'll try to stop that. What did we go about doing? Well, as I said, we developed a six-week self-esteem group intervention, and we- women from the centers were randomly assigned. So it was like flipping a coin we decided they would either participate in the ongoing regular fine services of their CIL or they would participate in another situation, another group where they could participate in their-the activities of their center for independent living plus participate in the self-esteem workshop intervention. And that was just to see if you add a self-esteem program to the other services that are offered to consumers if that would make a difference on self-esteem. And we were primarily interested in would women-would the workshop result in increases in self-efficacy or that sense of confidence. I'm confident that I can achieve a goal that I set for myself and those goals could be around relationships or taking time for one's self or, you know, a whole variety of ideas that women of course came up with their own ideas on how they could kind of build their own self-esteem and self-regard. So, anyway, basically, we found out that the workshop was effective and Heather is going to talk about that in just a little bit. And I believe, Heather, you're on for this little bit, if you will, on how we measured the results. HEATHER: Okay. Well, basically, we asked one question for the most part, we wanted to know-overall we proposed that the intervention would directly increase self-efficacy or a woman's ability to have some control over and her social connectedness since we know from before that social isolation is such a large part of self-esteem. So we wanted to directly increase both that self-efficacy and social connectedness which would then increase self- esteem and in turn we thought we were hoping that it would decrease depression and depressive symptoms. So basically we were asking that by increasing self-efficacy and social connectedness would that then increase self- esteem and in turn then decrease depression. So we looked at the general information, demographic information that we always need for our studies, and disability information so that we could have all that information to be able to define our sample and be sure we're including women with disabilities who had their disability for at least a year and those kinds of things. We included important information about self-esteem and self-efficacy, social connectedness and depression and if anyone is interested in what we actually used as far as measures, feel free to ask us, or contact us we can give you more information about that. all the participants completed the questionnaires immediately before the workshop and then attended the workshop and then immediately after the workshop and then we had a follow-up period after that. ROSEMARY: I think maybe I failed to mention that we had 102 complete the entire study--51 in the group that received the intervention and 51 in the group that received the services from their CIL's only. HEATHER: So then to help clarify with the measures, one group wasn't getting the workshop at all. They were considered the comparison group, and they-and so they received the measures at the same time point without the intervention. So in addition to completing those pre- and post-questionnaires, they also completed evaluation forms after each workshop session since there were so many sessions just to let us know was this one session helpful. So we had good information about individual sessions as well as the overall workshop. ROSEMARY: Thanks, Heather. Okay, just in terms of the self-esteem workshop, we developed all kinds of materials, like I said--the workshop trainer's manual, a participant's handbook, a recruitment handbook, questionnaires and so on. What did we do? Just basically over the course of the six weeks, we had session 1, we did an overview of self-esteem in more detail than we shared with you today and women with disabilities. The self-esteem in the context of disability and ideas about how the workshop would go, comprised the first session. And then the second session we focused on connecting to self. In other words, understanding one's self and talking about personal goals and experiences of disability, also in all of our workshop studies, we had several going on, we invite the women to share a little bit of who they are in the beginning of each workshop and what their reason is for participating in the study and also to share with one another their experience of disability. And we asked the leaders to start out by doing that by modeling that experience. And that seems to be really positive except that the women always want to-they kind of tell me, you know, we don't have enough time to find out about those different disabling conditions, and so we built longer breaks-especially that first meeting, they're just very interested in getting to know one another and they interview each other and then share that and so it's a really nice start. The second session is connecting to self, as I said, and session 3 we talked about caring for self, you know, in terms of boundaries and learning to say no and learning how to find time in the busy life that we all lead to have a little relaxation, a little R. and R. and to, you know, really care for one's self. Session 4 is on connections and so that whole piece about connecting with one another, mutual support, giving, but knowing that part of the whole deal there is to receive. Talking about receiving and giving and we offer some information and then the women come up and share with all-they share all kinds of ideas about how they have problems or barriers to social integration and social support or how they have overcome those barriers and some of the techniques that they've used to stay more connected and from anywhere from the Internet to the telephone and joining support groups and all those kinds of things. And the fifth session, the fifth week we focus on effective communication and assertiveness and the importance of being able to set the boundaries, say no, and speak up for one's rights, rights as a person, as a woman, as a woman with a disability, you know, information there on abuse and setting the limits in that whole really difficult arena related to people and their environment, their personal assistants or other caregivers or, you know, people that they live with or are married to or whatever, just in terms of being sure that they know and they know they have the right to say no and the women have been very creative incoming up with ideas. They come up with the ideas in these programs that-also that we've incorporated into our safety planning. So many of the ideas that we get from one study we incorporate into another study just from the women, from hearing it from your consumers, from our friends or our partners in our research. So the self-esteem enhancement workshop for women consisted of six, two-hour weekly sessions and each session the leaders would present on a topic and there would be discussion and they would practice some of the skills taught, maybe assertiveness with another woman in the group. We would ask them to generate an action plan. Like I said, they would come up with some things that they wanted to work on over just the next week, and they would talk about steps to be taken towards getting to a goal toward the end. We have in our workshop studies a buddy system. It's something that is well known in psychology literature and behavioral change and something that we've learned quite a bit about when we were working with Kate Laurent at Stanford, who uses the buddy system for this specific purpose And the buddies would talk with each other during the week and support one another in reaching their goals. If a goal was to contact one person that they haven't talked to for a long time or that they hadn't communicated with, then that would be the action plan and somebody would ask how is that coming along during the week and then the same thing, vice verse. So basically, that's kind of how it all went and they were- you know, our participants, first of all, in this study were-gave us really good feedback. Some of them talked about connection with others. They would talk about saying that they had learned; they're not alone in their feelings, not alone in their experiences. One woman said I like connecting with other women, and then when we talked about developing and maintaining healthy relationships, one woman said that she learned that we need to be full partners in relationships, and another realized she needed to, " to connect with an old friend".. Another one said I am hoping this will be another step for a good relationship with my son. So they also talked about-I mean when I say talk about here, I'm saying the written feedback to us. Each week they gave us written feedback and then we put these all together under these themes. Heather, you want to talk about self-esteem? HEATHER: Many women in the studies began to express about their self-esteem and their self-worth, that basically they found that their self-worth was a direct reflection of their self- esteem. One comment that was particularly pertinent was from a woman, I learned that I am a useful person. Obviously this was what she really learned about-another participant linked her emotions to her self- worth by quoting "it's okay to show emotion and still be useful", very important things to learn. And some comments need no explanation at all, for example, "I am truly worthy and do love me for me and have on lot to offer others". "Life can be enhanced, even if a person is disabled with hard work, determination and knowing and loving the person you are." Another one, "I learned to love and honor myself with my limitations." And, "I learned to be able to connect to myself and to be proud of myself." Toward the end of the program, one participant said "I learned to see myself in a more positive, less judgmental way. I am an ongoing expression of myself each day." These are very powerful quotes from women who were not feeling, certainly who were not having a lot of self-esteem in the beginning. A few women became aware of how negatively they viewed their self-esteem and becoming aware of that was helpful. For example, one woman said I learned that it's hard to like yourself. Another mentioned I have a hard time saying I do things well. And then of course a few said I have a long way to go. A lot of women said, wow, this is difficult. I have a long way to go with this. And only one woman stated a decidedly negative comment during this session. She reported, I really learned that I have very poor self-esteem. I hate myself. And just being able to come forward with that we believe is very powerful. She is able to talk about that and hopefully then move forward in starting to build her self-esteem. ROSEMARY: I'm sure I would like to be a fly on the wall in that group because the women in the group are very creative about working with a woman who is having trouble liking herself or with her self-esteem. Well, let's see, another theme was emotional awareness. Similar to that woman, another woman said "it's possible to have high self-esteem one day and be at the bottom the next." And that kind of feeling that something comes along, yet one more barrier, one more, you know, site of discrimination or something could come along and change that so that it's a stage. You can talk about self-esteem as a trait or a state, and what she's saying here is it's a state. I feel really good one day and other days it's not so good and I think that's real for us all to hear, too. Another unexpected response came from one really thoughtful participant when we were doing the session on connecting to self. She talked about her sexuality in a way that women without disabilities sometimes take for granted. She said, "let's start with sex. It is different I think for disabled women. As a matter of consciousness-raising, mainstream women want to stop being seen as sex objects. I would like to be seen that way." We certainly heard this in our other studies, in our sexuality studies. And she goes on to say, "no one ever whistled at me when I was in a wheelchair, only when I was in a car or some other situation where the chair was not visible. That kind of thing registers on one's self image. Now, when someone flirts with me I think taking care of me is a lot of work so you probably wouldn't want to put up with that. That knowledge impacts my self-knowledge. And then there are all those years when I was a good buddy and guys would tell me about all their problems with women as though I was no gender entity at all." Although it is obvious-doubtful the program developed the participant's deeply thought out observations and she had those when she came to the program, it probably gave her an opportunity to express those feelings and to invite other women an opportunity to think and express that as well and share on that level. HEATHER: A lot of the women-one of the topics was improving life skills and this was a big concern for participants on how to impact their live skills from being better organized to setting goals to using the daily affirmation that we developed and encouraged them to develop and repeat over to themselves every day. Such as I like myself, I'm a woman worth value. I'm a woman worth love. I am worth having pleasure in my life and things that we wanted them to build into their own life that worked for them. One woman reported that-she said, "I should be better organized and more reasonable in my expectations, and take time to de- stress." She mentioned that some of the material was familiar to her, but that she hasn't applied it to herself. And so often that's true for the women in the group and for all women and all people that we may know what we need to do or we may be aware of some of these things, but we never-or we haven't been able to really apply them to ourselves. And that was something that she took from the group. Another woman wrote, "I learned that other women with disabilities are searching for better life coping tools and I need to do affirmation to counteract all the negative thoughts I have." We found out that a lot of women really enjoyed all those struggles with developing positive affirmations that they repeated to themselves and leaned to try and make a part of their personal lives. ROSEMARY: Well, there were some negatives. I'm sure that some of you were jotting down that question of what didn't work so well. Well, we have received- with this workshop and other workshops that we've done and some that you've done I'm sure, you always receive it's just not long enough. There wasn't enough time, and I remember doing some training in another lifetime, at a different educational institution and saying the key to that is not having so much material. And we probably did that today too, not have so much material, we tend to slow down and don't feel that we're so rushed in getting everything done, but I think it was more than that. We were getting a different message from the women in this study. They were basically saying that they wanted more time to be together. You know, that seems to be-that seems to be something very, very important. But they did say some really specific things and gave us feedback that sometimes somebody hogged all the time and there wasn't enough time for speaking, and while that's happening, some of us lose time to speak or forget what we might have said. So probably one solution to that would be to have-maybe have a program that goes a little longer. I think we had an hour-we had two hours with the break, maybe extending that sometimes and maybe you have some good suggestion for us. I can't stand it that you're not around here because I keep wondering if this is going well for you. Anyway, another complaint that they had was that they wanted-they thought that the material could have been improved some and this is specific to a couple of women out of those 51 that participated where they felt that the content was pitched too low. They wanted it at a higher level. I'm sure that you know this, too, that it's hard to reach that kind of medium ground with content and even the processing of people is different and so it's quite a challenge, but at least-we only had a couple of comments like that but a couple are important. So we'll see how we can improve that in our future work. HEATHER: We also had some very positive things praising the program essentially for the negative comments that we just mentioned, there were equal amounts of praising it or more. Many of the women were grateful to have the opportunity to participate and meet other women with disabilities to share their feelings and we find that that's a common thread in all of our intervention group experiences, that the women are so relieved to meet other women who have similar feelings. And they also appear to appreciate the work that went into developing the program. It certainly makes us feel good. We had some quotes like "the program is very effective". "The participants were very vocal and willing to share their ideas about problems". "I feel this program is very positive and beneficial". Also, "the program gets better each week, these issues are powerful to look at", and "the workshop is a great opportunity for healing." They also enjoyed the facilitators and felt they were excellent. They really enjoyed the workshops. ROSEMARY: I just want to interject something there if I could, Heather. Before I forget, I just wanted to let you know that one of the best ways to know how this program and our other programs have been working is if we hear that they are continued. And I know that at least two of the centers and possibly more, I just haven't heard about it, have continued to run these self- esteem workshops. They're doing that up there at the Summit in Montana and Cathy is doing that down in Florida. And so that's a really good sign. And I'm sorry if some others are doing that, too, and we just haven't heard about it. Making that a permanent part of the services of the CIL's is really what we're after. And we really see this intervention as something that we want to be available to everybody to everybody, all 579 of the CIL's if possible. And all-all the women, not just the women-the women with the characteristics that we found for this study--but also other women--women from different racial, ethnic backgrounds who speak different languages, particularly Spanish and so on. Having those programs go on makes a huge difference. HEATHER: Right before the Web cast, we received an e-mail from someone asking if we included women with invisible disabilities in this study, and although we didn't specifically in this study, that certainly is a very important and relevant question that is important. A lot of women with invisible disabilities face self-esteem issues and deal with the same dynamics with dealing with physicians, dealing with people who don't understand and having the impacts on their self- esteem. So I was very pleased to see that question come forward. And although it wasn't necessarily one of the focuses in this study we're referring to right now, it is one that we will definitely look at as well at CROWD. ROSEMARY: Although our focus is primarily on women with physical disabilities, we-I also know that Mike Nader up in Montana said they had implemented the workshops with women with cognitive disabilities and that that went really well and I believe they also had another run of it and included a whole mixed group of women with various disabilities and they shared it with some folks over in Billings, Montana who then used it for some programs they were doing with kids- girls with disabilities in the high schools. Now, I know I'm talking about Montana, and yes, of course, I was born there and raised there. So I see that's a really good sign; not that I'm favoring one of those CIL's over the other by talking about those. They all did a tremendous job. HEATHER: And I think it's important that one of the things that stood out to the group members was the humor that was also included in the group, that these weren't necessarily heavy, depressed groups, but there was a lot of humor incorporated into them and two participants really mentioned in their feedback that they enjoyed the humor that they found within the group. If I can quote from them, one said to be easier on myself, more accepting of myself and sharing in the group brought out humor and laughter, and humor really helps the pain level and attitude. So humor can be such a healing force through all the things that we do. ROSEMARY: Basically, what happens- what were the results after we got finished in terms of the questionnaires? Basically, we found that the women who participated in the workshops compared to the women who did not participate had higher self-esteem-they had improvements on self-esteem on two measures that we used --two different measures of self- esteem-- because that was our primary interest in this study. And also the women improved their scores on a measure of self-efficacy and that sounded really good to us because we had spent a lot of time in the workshop itself on self-efficacy, building confidence, setting goals, coming back and problem-solving with one another and getting feedback from one another and then starting over the next week with it. So it was self- esteem, self-efficacy and depression. And what we really found at the end when we looked closely at all of this is that social connectedness didn't show its significance from the statistical significance change but there was a trend in improvement in social connectedness that didn't reach the level of statistical significance, but then we only had 100 women. So the more you have in the study like that, the better chances of getting significance. Now, what we were really interested in is that from an analysis we did, it looks like as self-efficacy changed and self-esteem changed, and finally that led to decreased levels of depression. Now, we have other studies going on on depression, but this is very interesting that this program seemed to have that effect. And by our analysis, it did. We only have to replicate the study and do it with other groups to find out whether that will be of help; but that gives us a really good feeling about moving forward with this particular intervention. HEATHER: And basically we kind of want to ask ourselves, well, what can we do to help women with self-esteem, women with disabilities. The first thing is to recognize that self-esteem is a problem, can be a problem for women and offer programs to improve self-esteem. Like I said before, even a brief structured self-esteem workshop worked well. We did not require that the women attend all six sessions. We've done enough of this kind of research to realize that lots of things come up for people with disabilities in coming to a weekly program. We asked that they attend four of the six sessions to be considered a participant in the study at the end. So even with that, we got good results on a brief program. The other thing from that other study is that parents and other caregivers of girls with disabilities should be educated about the damage that over protection and low familial affection and being kept from participation in school activities can have on girls' self-esteem and how people-how they see people perceiving them and their likelihood of achieving higher education. That was a finding that Heather talked about earlier. So caregivers should be coached on how to provide affection without overprotection. And that we got from the study that probably is not a new line for you at all, but it did come out of that study. It certainly-adds credibility to it. And then to focus on the very real impact of barriers to education and employment that still exist in this world of ours. Advocating for improved access to education and accommodation in the workplace would probably produce more improvements in the employment prospects for women with disabilities. Remember before, Heather was talking about the connection between employment and self- esteem. Centers for independent living might want to consider how important it is to recognize that many women with disabilities may experience psychological distress or other mental health problems. And offering peer-led groups that might help lessen these problems should help consumers achieve even greater independence than they are able to achieve through their current CIL programs alone. So how do we know how we are on time? HEATHER: I'm not sure. I think we're at a good point to ask to see if there are any questions that have been generated or any additional information anyone would like us to talk about. It's about a quarter till or 10 to 3. Is Mark Richards there? MARK: Oh, yes, I'm here. HEATHER: Well hi Mark Richards MARK: We have plenty of time for questions. If y'all have more that you want to talk about, that's fine also. HEATHER: Okay, well, I think-do you have any questions right there that you want to offer us? Is there one that might fit in here with what we've been talking about that could be answered? Otherwise, I could go on all day. Don't worry about that. MARK: Dawn, do you have anything? DAWN: Yeah, I've got four questions. HEATHER: How about one. DAWN: So is there an inverse relationship between overprotection and affection? HEATHER: Inverse between over protection and affection-basically, I guess-let me kind of put that in a different context and hope that I answer it correctly for you, that basically we know that self-esteem-that basically those people who were overprotected and received less affection had lower self-esteem. So In that way higher overprotection and lower-did I say that correctly-being more over protected and-my mind just went totally blank-and less affection. In that way there is inverse, being more over protected and having less affection does have an impact on someone's self-esteem with of course more over protection and less self-esteem. Less affection, less self-esteem if that clarifies that for that person. Those are very important things. It's kind of a theme throughout that being over protected and having less affection and I think that maybe a lot of us can resonate with that. If you are in a warm, loving family that is perhaps willing to allow-or afraid maybe even to let their child branch out and try new things, it's possible you may internalize a lot of that. And that's what we believe we were seeing there. That was a good question. HEATHER: A well thought out question. DAWN: Are you ready for the next one? How did you operationalize severity of disability? ROSEMARY: We in that study-we gave the SF 36, that is a measure of health status and there is a scale in there, a subscale that's physical functioning. And basically we operationalize disability in that particular study on the level of functional limitations. And that would be-that scale has items from like, you know, ability to walk-climb a flight of stairs, to walk a quarter of a mile, to lift a pencil, and so that there is a score the at the end, and if the score is higher, the physical limitation is higher. HEATHER: If the score is higher, ultimately the function is better. (Inaudible). I'll have to go back and look. ROSEMARY: We would also have used the assistive devices that were used and personal assistants, you know, whether the woman used personal assistants for activities of daily living or instrumental activities of daily living. So whether she used-required assistance with activities of daily living such as dressing, feeding, bathing, and those essential activities or with instrumental activities such as gardening or housework, going shopping, that kind of thing. Sometimes we add pain to that, too, the level of pain. I don't believe we did in that study. So it's physical functioning, use of assistive devices and personal assistants. Does that help? MARK: Dawn, do you have- DAWN: Yeah, I've got two or three more. HEATHER: Okay. DAWN: How do we improve social connectedness for women with disabilities in rural areas where resources are few and jurisdictions are large? ROSEMARY: That is a really good question. We are hoping to, you know, do some important work around that area. We just received a grant from NIDRR; we're really excited about, to implement our depression self-management program in rural CIL's. And one of the things that will be very interesting from that perspective is including the women and noting the transportation barriers and other barriers to participating. You know, the thing that we could probably suggest to the CIL's, if it were possible-some way or other, I have just always thought this, it's just an idea, but something I thought would be interesting to test, you know, in research, would be the effectiveness of setting up some- number one, some telephone buddies or telephone connections. You know, I've thought of that as part of a study, but it doesn't necessarily have to be part of a study. So that there would be somebody-people would be receiving-especially people who are in, you know, really snowy, cold, icy weather who will be in their homes for a good part of the winter so that there would be some kind of social connectedness there and some possibility of doing something about the social isolation that exists for those people. And then the other thing, of course, the obvious one is the Internet and chat rooms and all that. But the problem with that is that, you know, women with disabilities -- 80 percent of women with disabilities are unemployed and the average-the median income, household income for this study was something like $12,000 and, again, you know, purchasing a computer is way out of the question for many, many people, many, many women. But if that were ever to happen, then there would be that mechanism there or for the women that can afford that, that might work, but again, that would be a more affluent group of rural women. Rural and affluent don't frequently go together. Anyway, so we hope that when we do the depression studies in the rural areas, that we will have a lot more ideas. I suppose that-I don't know if Linda Gonzalez is on there or not, but she has a head full of ideas about things like that, and it's a really good question and a really difficult question. But it's something we're very, very passionate about. Especially those of us who grew up rural. DAWN: Well, this next question is probably along that same line. Do you plan on doing any research like this with a longer follow-up period to assess the long- term effects of this kind of intervention? ROSEMARY: Yes, that's one of our plans. We have-this is the only study that we've done, an intervention study like that, where we did not have a follow-up at least three months. So we're definitely moving in that direction but what we see as feasible is that we have the funding that we received from an organization like NIDRR, and we developed the program. And then we take those programs to the next level. You know, when you're developing a program, designing it and developing it and pilot testing it and getting the first data, that takes a lot of time to put all that together. I'm sure a lot of people listening do that all time, you know, through your services at your CIL's, but anyway, so taking the first funding and developing the whole program like we did with this, and then taking it to the next step and the next step would definitely be to do a longer term follow-up. And we already have the thing- the program developed so we just have to package it and then use the funding to follow up on a longer basis. So, yes, that's one of our plans and we have lots of plans for this particular program and the other ones that we're doing, too. We have been funded by other agencies to do similar kinds of studies, not on self-esteem, but definitely by NIH and CDC to do some of these, and so we see these programs that we're developing, whether they are self-esteem, depression, self-management, stress self-management, the focus, you know, is-for us it's self-management and really empowering the woman and building on her own capabilities to manage the feelings of depression or the stress in her life by learning and learning from us and from each other and from leaders and all that the readings and everything to develop these techniques. Sometimes we all have the techniques, but you know, we just don't remember we have the techniques. So it's kind of a refresher course in all that. So then that self-management can step through, but the other thing we also focus on a lot is when self- management might not work when we're really in a severe state of distress. And we have certainly encountered women in severe states of psychological distress, and that's the time to go beyond self-management. But there is an awful lot that can be done with self-management in mental health. So we want to take any of those programs that we're doing and do more work on them and get to the point where we feel that the programs don't just have efficacy in this study, but that we can say that they're effective and the way we say they're effective is by testing say in this study and other populations that we feel it has efficacy for women with disabilities in any center for independent living or rehab setting and that we could give it a way then. That we could take it and really give it away as a package. There still has to be more research before we feel confident that we can do that. And it gets away from us, you can use it, that's okay, but we really want to know that it does have-that it can make a difference, that it is effective before doing that. HEATHER: I want to jump in really quick. I think as I was thinking-I thought about the question regarding the inverse relation between overprotection and affection, and the person who asked that might have wondered if we compared those two variables and saw that in families that were over protective, they were also the ones to be more likely to have less affection and I don't know if we looked at that per se. That's not any of the data that I have in front of me right now; but that would be interesting to look at to see if those people who tended to have more overprotection also reported that they were-had less affection. I'm sure we could look at that and we probably have, I just don't have that with me right now. So if that was the intention of that question, I'm sorry, I kind of missed that originally. Hopefully we can certainly address that later if interested. ROSEMARY: Any other questions? DAWN: Yeah, there are five or six that have come in. ROSEMARY: This is great. DAWN: I'm just going to read them in the order that they've come in. At the NCIL conference this summer, one of the presenters with an invisible disability, brought up the fact that due to her disability she was not always able to participate in her children's school and sports functions and that she was often unfairly thought of as a bad or uncaring mother, which was quite a burden to her. Do you have any input about that? HEATHER: Well I think that, just a certain understanding for people with invisible disabilities, it can be certainly as difficult to have to explain. You feel a need essentially to explain speaking even for myself, I have MS and unless I am having a problem that is visible that I'm really unable to function and walk and move or see, I certainly have a hard time explaining fatigue, explaining a lot of the things that would limit my ability to be involved in my child's life. And I mean just kind of understanding that, that it's certainly very difficult and would clearly have a large impact on us as people, as women, especially when it comes to our children to try and feel guilty or not to try, but to actually internalize that. You feel people are judging you and what we would have encouraged in the workshop is, you know, kind of embracing the disability, understanding your limitations, knowing your strengths and your weaknesses and improving on your strengths. Knowing you're good at what you do and that you care about your child and really those are all that really matter and what does and what doesn't really matter, but unfortunately in society we tend to really be impacted by societal views. I'm certainly a victim of that myself and always having to turn back around and say, wait a minute, I love my child and I'm always trying to be as good a parent or as good an employee as good as I possibly can, and I feel ultimately we probably really are. So good question. I'm not sure if there was more I could offer for that one. (Heather) how about you Rosemary. ROSEMARY: No, no, that's great, Heather. I was thinking in the workshop not addressing invisible disabilities, but people with invisible disabilities, but we did ask the participants to do all kinds of things that would empower-build their self-esteem, strengthen their self-concept to ask them to do things like to identify-to actually put on paper or, you know, say aloud, or however, communicate other than just in one's head, one's strength. Now, a strength might be stress management, they might be spirituality. It might be some kind of hobby. (Heather) it might be humor, it might be- you know, we could sit here and name like hundreds, but sometimes we forget to identify the strengths when those kinds of outside perceptions start to become internalized. That's a stigmatizing effect that I'm hearing about-or from women with invisible disabilities. And that can become really part of us, and to make-we asked the women in the workshops to make love lists, to make strength lists, to do those kind of things that are, you know, a statement, a public statement, if you will, of other good things that are going on. And in some way that might buffer some of those, you know, stigmatizing things going on in society. And to always remember- Heather over and over again remind ourselves like we said in the beginning, that it's a continuous process. We always have to remind ourselves-to remind ourselves of our strengths over and over and over again because if we do it once, we will clearly forget and the more we can repeat these things to ourselves it becomes more internal and part of ourselves. MARK: This is . Is there a difference between a defense mechanism and a strength? ROSEMARY: That can be the same thing. It just depends. I mean, we have to have defense mechanisms to make it through life. If we didn't, we'd just be vulnerable to just anything that comes along. We have to be able to-sometimes to rationalize that, okay, it's okay not to do everything like Heather was talking about. It's okay to just kind of rationalize that desire to be perfect and so on. So defense mechanisms in and of themselves are necessary. They are absolutely required. It's when they are overly used to the detriment of the person, you know, that self-esteem becomes a problem. So a person can be defensive in the sense that, you know, any feedback that's given to them is not going to be received and they're going to come back with some kind of angry outburst or something like that. That can get people in trouble of course in their relationships. Let me just say that's the difference between defense mechanisms and strength So maybe hopefully I've answered that, because, yes, strength mechanisms are our allies. That's why we have them. We don't want to use them in the wrong way. HEATHER: I think we can certainly know the differences. One way isif our defense mechanisms interfere with our emotional functioning or limit our ability to be happy. We can see that in-as Rosemary was saying, in someone whose defense mechanisms would be maybe to overjustify in an irrational way. Well I had to do it because... One example would be--me think of a good one--instead of using drugs that aren't appropriate for whatever reason, that's one of course they can be more weaknesses. So that's something that in that case that may be important to then get some help if the defense mechanism is truly contributing to someone's depression or interfering with their relationship. Then it wouldn't be a strength. Any other questions DAWN: Yeah, I've got two questions that I'm going to kind of read together because they are sort of on the same subject. Before I do, though, one lady did send something in that looks more like comments and I can post it on the message Board. It looks like it has some URL's you might be interested in, but she says I did a workshop on online support groups for people with disabilities, and she's basically wanting to remind people that you don't have to own a computer to be part of a chat group-a chat group or a support group. That there are public access at libraries and there are free E-mail resources and Internet resources. So I'll put that on the message Board. HEATHER: That's a really, really good point. I'm sorry I didn't think about that at all. Also at the centers for independent living, many have computers that are available to consumers. DAWN: Okay, and I'll just read both these questions sort of together. Many women with disabilities feel inadequate when its comes to sexuality. Did any of the women discuss their perception on sexuality and how that can be overcome? And the other question is I'm not sure if this is a stupid question or not, but I'll ask anyway, I have a very high sex drive. She says she's 40. I wonder if this is because I'm lacking something else in another area of my life? ROSEMARY: Those are both very good questions. Yes, sexuality is something that we definitely talk about. And I'm glad that it was brought up because we not only do we include it in this workshop, but we now include it in all of our workshops on some level, some more, some less. ROSEMARY: Yeah, but Heather, we have gotten some feedback from women in some of our workshops that they don't want to emphasize sexuality. That's interesting, haven't gotten a really clear picture with what's going on with that. We do address sexuality and we did in the self-esteem workshops, but- HEATHER: At different levels, but certainly what we have found and even in our more recent studies on-we're doing an intervention on stress and also now currently on depression and we've done one also that we're working on finishing up on healthy living for women who are aging with a disability. And that has come forward to some extent and there is a lot of differences. For woman who says-do the women talk about-I think the question was more difficulty with sexuality. Yes they do and I think the ability to share some of that is very helpful in being able to accepting that and what it is to be a woman and a sexual being and how that might be different from having sex or actual intercourse per seas opposed to lots of different things. So they actually definitely have those kinds of conversations depending on the comfort level of the group. For the woman who talked about a high sex drive and wondering if that might be compensating or for something else. It depends, is it interfering with your happiness and your functioning , and if it is interfering with all of that, then those are questions- that may be something you may want to talk with a professional counselor about. Although having a strong sex drive is rarely a bad thing unless it's interfering with your functioning in some way. If it's something that you find is consuming and you're not able to focus on other things or be happy. but if that's not the case, I wouldn't see that as being a negative. Being that you posed the question it might be something that you want to talk to someone in more depth. But also very good questions and I'm thrilled that someone brought those forward because they are topics that when we bring them up in group we get mixed-some women say why are we talking about this to, oh, I'm so glad that we're talking about it. So thank you for bringing that up. Are there any other things? DAWN: Yes, I still have four or five. ROSEMARY: Oh, great. DAWN: They keep coming in. Did you include women with sensory disabilities like visual impairments? ROSEMARY: Not in this study. We included women with physical disabilities that result in a significant limitation in mobility or self-care. That's the definition of women with disability in this study. And our focus at CROWD is primarily on women with physical disability and one of the reasons that researchers focus on particular populations is that when you try to compare people with lots of different health conditions or lots of different kinds of disabilities, then you have to have so many people in the study to do that and a lot of times we just can't do that. And then you get other problems with the research itself that, say, well it's a research question. It is basically the passion of the particular center and our Executive Director and wonderful Peg Nosek has been not exclusively but strongly on women with physical disabilities, particularly women with severe physical disabilities. Now, do we include women with sensory impairments? Yes, of course we do, but we want them to also have a physically disabling-in other words, a disability that results in significant limitation in mobility or self-care. And there are other centers that are focusing on other disabilities including sensory disabilities, but that's how we approached this. MARK: Was that the Montana study you were talking about earlier? ROSEMARY: Yes, and we actually have a woman who just approached us about coming here to do a training-a two week training on what we're doing here at CROWD, and she's a woman with visual impairments and she's working a lot with a European union on the societies for people with visual impairments and, yeah, I told her kind of what we were focusing on and doing and that's just fine because there are-and there are-there are so many commonalities and there are very significant differences in the definition of disability. But, yes, Mark, Montana-I don't know, Montana focuses a lot on people with cognitive disability. MARK: Dawn, how about one or two more? DAWN: Yeah, we have some more. This is from El Paso, does ethnicity impact or influence self-esteem? ROSEMARY: Wow, that's a great question. Yeah, that's really interesting because I'm putting together an application right now on-it's just an application, but wanting to translate this self- esteem program into Spanish and test it among Spanish speaking and Hispanic women with disabilities just to see how-whether it works well for that population. In doing all that, I've been reading a lot of articles and writings about the effect of culturation, the effect of linguistic barriers and family-kind of family socialization and religious values that are for many people who are members of ethnic minorities, especially people who may be-may not be immigrants to this country, but may have been born in this country, it seems to be that there are a lot of barriers, particularly if they don't speak the-don't speak English or English is not their primary language. Actually, some of the literature is very interesting on that. they talk about people who are living in this country who were foreign born, sometimes feel better about themselves and their self- esteem is morepositive because they feel that they've made a difference, that they left a situation that was really difficult and that they have come to this country and that they can help their families back home and so they may not have the same kind of experience-same kind of self-esteem problems as somebody who lives in this country, who is under employed and speaks a language other than English and deals with all-not just the disability related barriers, but the linguistic barriers and the cultural barriers and feels like an outsider outsider, feels very isolated and all that goes together to affect self-esteem. That's a terrific question. MARK: Well, you know, we have the 6th of January available if y'all would like to do a Web cast on that. But I think that sounds like a good Web cast subject. ROSEMARY: It does, but we haven't done the study yet. Mark Ok well ROSEMARY: Somebody will take it interesting and fund it so we can do it. MARK: Dawn, I think we have time for one more question. DAWN: Well, I've got two. Here is the first one: Are the ILC staff who help with the workshops required to be trained as professional counselors or psychologists? ROSEMARY: No, no. We just go with the definition-I mean the counselor-the advocacy counselor or the, you know, employment counselor, whatever-just a counselor at the CIL's. So somebody who has worked and does work on a face to face basis and probably has done some group that can be-the nature of the group is not as important as the kind of front line-those front line responders to help people. Not that everybody does them, but some people have different roles in every organization and so that's what we're looking for in these studies. That's why we ask them to identify somebody either at their center or in the community who is a licensed counselor so that if there is-when we're doing workshops that are on mental health topics so that there is somebody there just in case they find somebody who is severely depressed or suicidal, something really severe. It doesn't happen, but it can happen. It hasn't happened too much, but it has happened here in Houston because we do a lot of our studies right now in Houston and we are pretty well staffed on that dimension in terms of mental health. So that's why we do that and we write into our budgets a small compensation for a person to serve in that role. DAWN: That was the second part of this question, was, you know, if they did detect something, you know, did they recommend for treatment or if they were just there for the self-esteem issues? ROSEMARY: No, no, they would work with the woman-the person on finding, you know, whatever the community or whatever her situation will allow in terms of access to services and whether they are county services or private or whatever. They would do that. That's why we want them there. DAWN: Mark, can I read one more? MARK: All right, if you're fast. DAWN: Do you have any plans on looking at the relationship between self- esteem and/or self-efficacy and its relationship to employment and the context of receipt of vocational services and CIL's or perhaps in a VR agency? HEATHER: Was that self- esteem? ROSEMARY: We missed a little bit of it. DAWN: It's self-esteem and its relationship to employment and the concept-and the context of receipt of vocational services in CIL's. ROSEMARY: Well, we certainly would. We- you know, finding the relationship between self-esteem and under employment would certainly be of interest. Now, do we have an immediate plan to do that? No, but if somebody wants to give us a call and talk with us about it, we can see what we can come up with together. We like to do things like that, get together and collaborate like we did-like we've done with the CIL's. It makes it really fun. Lots of good things can come out of it. MARK: Well, I think our time is coming up. Would you have anything-any closing remarks or anything else you'd like to share with the audience? ROSEMARY: Just basically thank you so much for your interest in self-esteem and self-esteem enhancement and mental health among women with disabilities and among people with disabilities, the context of disability certainly does introduce, you know, many factors, including barriers and other factors that may impact a person's self-esteem. And Heather and I and Peg all extend our appreciation for your interest and hope that we-hope that we shared some good information with you. MARK: Well, we always look forward to having people from CROWD. I'm sorry Peg wasn't here today. ROSEMARY: We're big talkers, too. MARK: Y'all did well. But Rosemary and Heather we thank you very much. I just want to let the audience know that if you have more questions or if you didn't have enough time to get your questions answered, if you will send those in, they will be forwarded to our presenters and we can post them on the ILRU discussion forum which is connected with this Web cast. So you will get a response and we would like to let you know that this presentation will be archived on the ILRU website so you can access the-access the actual audio as well as the text transcript. I'd like to remind you that the calendar of our 2003/2004 Web casts is routinely updated on the ILRU website so you can check it out and see what's coming up down the road. I would like to have your feedback for today if possible. There is an evaluation form on our website, and you can complete that and submit it, we'd appreciate your feedback. That's one of the few ways to know how we're doing and if we're doing it the right way. I'd like to say that this Web cast was made possible by the work of several individuals. Our ILRU staffers, Marj Gordon, Dawn Heinsohn, Rachel Kosoy, Sharon Finney and of course our technical support staff of Rob Dickehuth and our real-time captioner, the great Marie Bryant. And we'd like to thank the National Institute on Disability and Rehabilitation Research for providing the support for these web casts. This project is conducted today in conjunction with our colleagues at the Research Information for Independent Living, RIIL, the Research and Training Center on Managed Health Care and Disability, our colleagues at the Center for Research on Women with Disabilities, and ILRU, which is a program of TIRR, a nationally recognized medical rehabilitation facility for persons with disabilities. And we thank you very much and have a good afternoon. Thank you.