*The Community Choir: Singing for an Inclusive Society

by Robert Bogdan
I appreciate the comments of Steve Taylor, Julie Racino, Pam Walker, Carol Berrigan, Susan O’Connor, Zana Lutfiyya, Bonnie Shoultz, Rannveig Traustadottir, and Doug Biklen on earlier drafts of this paper. A special thanks to Pam Walker for her contribution.

With the exception of Karen Mihalyi, the names of people used in this article are pseudonyms. In cases where I or Karen thought that revealing the name of a community organization would break agreements of confidentiality the name of the organization has been changed. The explanations that appear in parenthesis in Karen’s text were written by Robert Bogdan.

Introduction

While there is a movement afoot to change the situation, human service agencies too often dominate the lives of people with developmental disabilities. Integration is, correspondingly, something professionals and staff do for “clients.” But there are m any places in the community other than human service agencies where people labeled developmentally disabled spend time. With some of these locations, the people with disabilities are there not because it was engineered and supported by human service work ers– they are not “placements” or “programs”–but rather integration took place and exists through more ordinary social processes. People with developmental disabilities are accepted because ordinary people are involved in their lives. The presence of people with developmental disabilities in these settings is often taken for granted rather than thought about as a special accomplishment. We (Whenever I use “we” I am referring to the research team at The Center on Human Policy) call these places “natural environments.”

Our team has begun studying “natural environments” in an attempt to better understand inclusion and acceptance (Bogdan and Taylor 1987, Taylor and Bogdan 1989) of people with developmental disabilities. Sites become known to us serendipitously–we fall upon them in our daily lives, someone tells us about a place they know about, or they become evident through our other studies of community integration (Taylor, Bogdan, and Racino 1991; Lutfiyya 1991). We have been visiting restaurants, bakeries, small towns, recreation centers, neighborhoods and other community locations observing and talking to people who are important ingredients in making these environments naturally inclusive. Occasionally we find a person who plays a particularly important role in creating and maintaining a natural environment with an atmosphere supportive of integration. We have met thoughtful citizens who have special insights about how community integration comes about. In this paper I present the edited tape-recorded transcripts from a series of interviews I conducted with such a person, Karen Mihalyi, the director of the Syracuse Community Choir.

The Community Choir is a singing group started by Karen in 1985. It counts among its 70 members a wide spectrum of people including a few labeled severely developmentally disabled. Karen and many of the choir members live in a section of Syracuse called the Westcott Street area. The choir also practices and finds many of its strongest supporters there. In the 60’s and 70’s that section of the city first became known as the Westcott Nation: “Nation” designated that the people who lived there were a different breed–a generation not tied to middle class conventions and aspirations.

On the outskirts of Syracuse University, this section of the city has maintained that reputation and some of that character. It has always been racially, culturally and ethnically diverse. African Americans, International students, old timers, graduate students and their children, people who went to the university but never quite finished or never quite left, artists and intellectuals, lesbians and gays and others live there in relative harmony.

Karen is 40 years old and has lived in the Westcott area for close to 20 years. She grew up in a small Upstate New York town and had many early experiences that shaped her philosophy on diversity and inclusive communities. For example, a classmate, later labelled mentally retarded, was her friend through elementary school. After the high school labelled her, she was removed to segregated classes. Karen experienced this as unfair and unnecessary. Also, she was a babysitter for a child with cerebral palsy when she was in 9th grade, and saw that she needed to treat him like she treated her many brothers and sisters. When an African-American music teacher moved to her town, she took lessons from him and he became a great friend of the family. She attributes her basic values to the teachings of her parents, who believed that “everyone is okay.” She learned from her parents’ example that racism and other forms of discrimination were intolerable, and she learned from her community what it means to be connected and to belong.

Karen has spent her years in Syracuse working on projects aimed at increasing peace and justice in the world. She lives what might be called an alternative life style. She has never been employed full time in a regular job, rather she has been active in political organizing and community building. She earns her living through a variety of activities including feminist counseling, conducting workshops and consulting. She is paid the token amount of $50/week for being the choir’s director. She lives simply. She owns a small house she shares with two other people and drives a 1983 Honda. Karen is vibrant with enthusiasm and commitment.

Karen’s Own Words

The choir started in 1985. It is an outgrowth of many themes in my life. Before it began I went to Nicaragua. I had been working in the women’s movement almost full time for over 10 years. In Nicaragua we attended incredible meetings where I saw people, everyday people, all kinds of people doing theatre and music. They really made an effort to have something for everybody–not just the “talented” or the young or the old or the rich. Organizers were going back to these tiny towns and creating theatre, poetry workshops and dance. I sensed what an incredible process it is to create something this way. I believe the world is for everyone. We need to make a place for everyone. That is what I have tried to create with the choir.

I decided to do a choir with no tryouts. Everybody, no matter what, would have a place in the choir. Like there is a place for everyone in the world, “All God’s Children Got a Place in the Choir. Some sing lower, some sing higher, some sing out loud o n the telephone wire, some just clap their hands, paws or anything they got.” (Bill Staines) That was really the idea, that the world is for all of us. I also wanted to create good music – progressive pieces that talked about real people’s stories, and struggles for liberation–music you don’t often get a chance to hear much on the local radio.

It was in January of that year when I got back from Nicaragua I thought “that’s what I’m going to do.” It just came to me. There was a peace event–a rally and parade–planned, and they asked if there could there be some singing. I started asking people. I had some contact with disability issues. I worked for the College for Living (a program located at the local community college which offers classes and other activities for people labelled developmentally disabled) and did women’s groups at DASH ( A local advocacy, self-help and service agency for people with disabilities.) But when I thought about the choir I didn’t think about consciously recruiting people with disabilities.

I made contact with one person who I knew who used a wheelchair, Molly, and I asked her if she wanted to be a part of the choir. I drove over with her to the park where we were to sing to see if it was accessible. She drove me on her battery driven vehicle which was like a golf cart. I remember what a different view of the world I got being taken by her. The site wasn’t accessible. We tried to do something about that. At first the choir was mostly my friends and those that we got by word of mouth. Then I purposefully recruited for diversity.

I don’t really screen people but I intentionally seek out kinds of people who might not be represented well in the choir. I’ll ask people would you like to join? I mean I’ll ask anybody but I give more attention to people who aren’t white and able bodied.

We started to rehearse for another concert, an alternative July 4th celebration. We had the celebration in the Baptist church which was not accessible. At that point I wasn’t as aware of accessibility as I am now and Molly didn’t push it. We said: “Okay we’ll just carry Molly up the steps.” It was a beautiful concert in the main hall. Downstairs we had booths, all kinds of peace booths – like a fair. It was packed with people, 350-400 people came. Then we decided to continue.

We had some mailings that I organized. I had a committee of people but I am the one that got it started. We did a lot of recruiting, put out notices everywhere: “This is a choir for everyone. You can say you don’t know how to sing, but try out. There is a place for you in the choir.”

I had some background thinking about inclusion. The women’s movement more than any other movement that grew out of the 60s started to address the issues of inclusiveness. It was painful. People were confronted by each other: by the whiteness of the movement, by its middle classness, by the lack of sisters who were disabled. The movement left in me the intent to do something about class, race, disability, gender, and homophobia issues.

I grew up in a small town but I was very political. It was a very political time. I started Syracuse University but got too involved in the war (anti Vietnam War protests) and working with poor people. I just didn’t know what I was doing in school. I went back to school in Social Work. I was organizing for welfare rights on the West Side of the city. I was getting involved in this community.

I moved in over here by the University to the Westcott area. We started the Women’s Center and I was involved in that and other things until about ’82. During this time a group of us were living collectively. We are still together, live in the same are a, and are close.

Somewhere along here I met Holly Near (a well known peace and justice folk singer and writer). She stayed at the house a lot and I was part of her production team for her concerts. I always wanted to do music and drama but felt that wasn’t important. I thought I should do political work or social change work–organizing. She felt the movement needed music and music was part of social change. It was about creating or shaping culture for peace and justice.

There is one Holly Near song in particular that touches the spirit of community that I am a part of: “It Could Have Been Me.” There is one verse about a student shot at Kent State and another about a Vietnamese farmer who was killed–“It could have been me, instead it was you, so I will keep on doing the work as if there were two.” It moved me a lot. She gave a generation of us energy. I use a lot of Holly’s songs in the choir to sustain me and give focus to issues. I remember her singing at a rally we had. She sang a song about a 70 year old woman with dignity. There was a verse about a woman in a wheelchair and another about a woman signing.

It was Holly who started doing interpretation at concerts to reach the deaf community. Susan Fruendlich was her interpreter. All Community Choir concerts are signed.

The choir’s this hodgepodge. There is a high percentage of people with disabilities, many of them with hidden disabilities, some who have been institutionalized in mental hospitals. There are children and some older people but they are underepresented. There are Native Americans, African Americans, Hispanics, European Americans, lesbians, gays, poor–even rich–you name it.

We did quite a few concerts last year. There was one for Jowonio (an integrated pre-school), another for the Onondaga Indian Nation, there was the tea in January, and for African American history month we did a show. We did the tea to raise money. It w as fun. It was a real tea with china cups. We did an International Women’s Day concert, we sang at an Aids Survivors benefit, we sang at a Peace Child celebration, we sang at Earth Day, and then at the Imagination Celebration. What else?–we sang once, sometimes twice, a month. We charge for some but a lot are for service. At some concerts we charge at the door $3 to $10 sliding scale. That is what we charge at the Winter Solstice Concert. At that concert we are particularly sensitive to have an eve n mixture of songs from different religions and cultural groups, Native Americans, Jewish, African, –not your typical Christmas show.

When I was active in the Women’s Center I also started working at DASH. They called me because they knew my work and wanted a leader for a women’s group. I had to pick through my own stuff and straighten myself out about disability. We all have problems around it, you know like not slowing down enough to listen to a person; not letting people finish sentences. I try to be very sensitive to the fears of women with disabilities. More ought to be done around issues of sexual abuse and rape. Sexual abuse and rape is part of so many of the experiences of those people. In the groups that I did at DASH, so many of the women were abused.

When we had the first blind people in the choir I asked members who could see to help with the words. Then I read something, it was by a woman who was blind. She pointed out that every place she went in the seeing world there was never braille. From then on I said every number we do has to be in braille. People in the community volunteered to do it. We just put in for a grant to get a computer brailler so we can do it easier.

One day when we had just started we were at rehearsal and in comes a whole bus load of people from a group home for the mentally retarded. One of them was Margaret, and one was Rhea Meyers, both of whom are still in the choir and very valued members. But when I saw the group I just freaked. I said, “This is going to be too much for me.” We started getting all these calls from group homes: “Well, we hear you got a place to drop our people off for an activity.” One person with experience in group homes who was in the choir said: “No, this is not going to be a dumping place.” But it is hard to walk that line between being open and being able to say no. People have to really want to sing to be in the choir. Margaret has CP, is blind, is labeled retarded, and can’t talk really clear. She sings and is welcome. A number of people who been in the choir since the beginning are from group homes.

Let me tell you about Margaret. She is 48 years old and she lives in a group home and sings tenor. She was institutionalized for many years in a developmental center. I think she is labeled severely mentally retarded. I don’t even know labels. I do n’t want to know them. She came to make-up rehearsal and sat at the piano. We were singing a song that had Spanish in it and she knew every single word in the song. She said: “I learned.” A very difficult song and totally on key. Jane, who does a lot of work with HELP (an agency that operates community housing for people with disabilities) says that Margaret’s vocabulary has really improved. It’s being in the choir.

The reality is that Margaret gets very little attention from anybody outside of the choir. When she comes to choir she gets attention and you can see her grow. It is tedious work she does all day at the sheltered workshop; the choir is her life line. But that’s true for other people in the choir too–some who are not labelled.

It has been difficult, there is no question about it. For a while the tenors had three people who needed a lot of attention. When Margaret sings her face is a light of joy. She is very much loved. She knows people. You know she will say: “Hi Dave.” She talks to people. People pass and say: “Hi Margaret.” She’s affectionate and loving and she has grown a lot in the choir. Some people are close to Margaret but she needs a lot of attention and sometimes there is none. She has to go to the bathroom. She has her period. It means that the tenors, the people around her, have to take that responsibility. I really want to talk about it because many people in the tenor section need a lot of attention. A number of people dropped out because of that last year. They couldn’t deal with coming to the choir wanting to sing and having to take care of someone’s toilet and other problems. They didn’t feel joyful. It felt like a burden. I don’t want anybody with a disability to feel like a burden. That is the crux of oppression.

One of the most difficult problems has been around transportation for people with disabilities. So we also made a decision. We were going to provide transportation for people who couldn’t get their own. Now that meant if you joined the choir, not only did you sing but you had to pick up people some of whom had wheelchairs. Some of them were very heavy and to drag chairs up into your car took a long time. People really got burned out; people left cause they couldn’t deal with all of that. So this year we tried to get Call-A-Bus (public bus service which comes to the door and is wheelchair accessible) to at least give us one sure way. Now Margaret and Rhea have their houses (staff from their “group homes”) bring them. It is really difficult to try to figure out these things with no money, no staff, and then have people love each other at the same time. It is hard.

This choir is not concerned about musical perfection but we need to have enough people who are musical to be good. I don’t worry about the choir’s quality because of people with disabilities. Some people have asked: “What if you had too many disabled people in the choir?” I don’t think it would ever be a problem of too many disabled people. Singing doesn’t have anything to do with disability. I have been worried about having so many people that need attention that we won’t be able to do music together. I do worry if I don’t have enough good singers. Some good singers have disabilities, some don’t. We have people who are “singing disabled” in the choir. I have given singing lessons to help some of them along.

We are trying to create community and make music too. The choir is about singing and it is about community. The two things go together. By being together and creating a sense of doing something together community begins to form. It is also what the audience feels when it is with us–community. We do a lot of community building in our concerts. Singalongs and other stuff. We sing about oppression. One of the things I was thinking about was how to do that with people with disabilities more. We can’t single out people because of their disabilities. You think about them too much and they wind up being clients.

We had a party after rehearsal last night. It was a great people hugging and talking party. There were blind people, and people in chairs and African Americans, old and young. Rhea and Margaret shaking hands with everybody saying good bye. It is wonderful. It is like my dream come true. That is what I believe and that’s what people see when they see the choir. People ask: “Can Margaret really sing?” I say, “Yeah. One of the best.” It is really worth it. This idea of inclusion is certainly beautiful. As I stood in front of the choir last rehearsal and looked for a while at the people there I just wept. This is my family.

There are great stories. One time one of the basses was committed at the psychiatric center. A bunch of us went to see him everyday. Even sang a little. He was so pleased. Last night a member with cancer stood up and said she was going through chemotherapy. She wanted people to know and she talked about what it was going to be like and what she needed. We care for each other. Every time Diane Murphy, a professor of social work, sees the choir, she tells me I am the best social worker she knows. Carol Green is an African American woman who has CP who also doesn’t hear very well. Her energy is so incredible. There are several people in the choir who she has become close to. She has been invited by choir members a number of times for dinner. One woman and her go out regularly. It has just been a wonderful thing for both of them.

Integration can be very confusing. It doesn’t always work to just plop people together. People have a lot of stuff that comes up. We did a workshop on disability last spring. People without disabilities went upstairs and those with disabilities stayed downstairs. The group without disabilities answered this question: “What is hard about being with people with disabilities?” It wasn’t too heavy. Someone started by saying “I’m afraid I’m going to be asked to do more than I can.” Another said: “I can’t figure out what they are thinking.” People laughed. They got to say things that they were embarrassed to say. Like “I am scared of Margaret.” Then they talked about what they appreciate about people with disabilities. The people with disabilities talked about the kinds of things they hated. One person said: “I never want to hear again from another person, oh my brother was crippled, so I know what it is like.” Then the groups joined together and talked. That was very powerful: people really felt connected. We need to do things around racism and homophobia too. We need to deal with how to create community. The people with disabilities wanted us to do it again.

There hasn’t been as much mixing between the people with disabilities and those without as I would have hoped for. Isolation is still a problem. When we are having practice and there is a break people get up and socialize but not everyone is included. Sometimes people with disabilities are left out. We have talked about it. People are more aware, but if you harp on it, it makes the people self-conscious.

Our philosophy is that we only give our concerts where all people in the choir will feel comfortable–African Americans or working class or poor and/or native people, non-white you know. If you are a person of color and you are in the choir and you go t o a place to sing and you see nothing but white middle class faces you might not feel right. With disability we started to think about accessibility. We wanted to use sites that would be as accessible as possible. We could not be strict because there a re very few sites that have accessible bathrooms and accessible performing places. When we are asked to do our concerts in places that are not accessible it is too difficult. They can’t move from their chair onto the toilet. We have done things like portable potties. We got asked to do a concert up at Clayton at the old Opera House. It was a really big deal but the Opera House was totally inaccessible. We made a decision as a choir to do it anyway but they made these makeshift ramps to get up on the beautiful old Opera House stage. There were no bathrooms so we had to make a little room and use portable potties. It was awful but we did it. I don’t know if we would do it again. It would be a decision the choir would make – if the people with disabilities want to do it.

Disability–it’s difficult at first when you are not familiar with a group you have a stereotype about. If you are not used to relating to people with disabilities you are not sure of how to. You don’t want to make a mistake–do something that might of fend them. So you hold back. Now I dive right in and hope that people know I am trying my hardest. I am really losing my self-consciousness around people with disabilities. At first I think I listened mostly. I listened to people and read some–mainly by people who had disabilities. But my ease mostly came by getting close with people, hearing their stories and loving them.

We have one person in the choir, Mildred, who has cerebral palsy who is a solid member of the choir. She is there all the time. She is in a wheel chair and has difficulty moving. Mildred has an aide who gets off at 8:30 so she leaves and goes home. Sometimes choir practice goes until 10 or 10:30. There is trouble with the Call-A-Bus service at that time of night. Mildred has trouble undressing without her aide when she gets home. She is so determined to be in the choir. She is on the board: her number is the number to call for information. What has been happening is that certain people who take her home also undress her and help her get on the toilet and get to bed and that takes about 40 minutes. So you know if I take her home I am done a quarter to 10 and by the time I get back it is almost 11:30. I’m exhausted. I try to feel joyful about it. It’s hard. I try to think how she must feel. The transportation and the aide problem is so huge but we have to respond or we would lose a person we want there, who is loyal and a good singer.

At the beginning of the choir I began to see the possibility of what participation might do to members. Most important–people would become more relaxed around people who were different. There would be arguments between people because that is a natural part of friendship. Sometimes it is difficult to let friendships develop naturally. It’s hard because sometimes the person without the disability is patronizing–patting them on the head and things like that. Also it is difficult for people with disabilities not to project that anger they have at the world for the way they are treated at me. One disabled person made a tape complaining to me about how I was mistreating her. She is blind. In the tape she said I wasn’t sensitive to people with disabilities. I hadn’t worked hard enough on the transportation. I didn’t answer the tape for a long time. For her it was really important. She was angry because I tried to talk to her about her taking some responsibility for her own needs–not waiting for someone else to do it. Arranging for her own transport. In a way it is really a great thing that this woman sent me that tape but it was hard for me. I just couldn’t hear it. I work so hard to make it right for everybody, it’s hard to field the complaints. That is one of the things that gets to me.

The conflicts we have in the choir often center around diversity stuff, which is good. Some people with disability were scared because we had been asked by the Gay Alliance to sing at a rally. So we had a meeting to talk about it. Our piano player, Andy, who is blind said he didn’t want to go. He said: “I don’t want to be seen there–somebody might think I’m queer.” Some very eloquent people talked about what it was like for them in their lives to be gay or lesbian. Of course people thought that everyone knew that there were people with diverse sexual preferences in the choir. Andy came back and made a speech. He said: “I’ve been thinking about this. As a blind person I always feel left out. I think this world should be ok for everybody. I decided I’m going to play. I don’t know much about gay and lesbian people but I guess I will find out.” It was a great speech.

I read about Jews who survived in Northern Europe during the war. Almost all the Jews survived knew non-Jews. They had allies. They had friends and when you are friends with a Jew you are not going to let them be killed. If you stay isolated, we don’t build allies, we don’t know people who are different from us, we don’t love them, we can’t think about them as family. When you have relationships with people that’s what makes community work. What happened to me is I had these experiences that helped me understand the power of inclusion. I am trying to create an opportunity for it to happen to others–both people in the choir and the audience.

People look at the choir and they say well it’s because of Karen, she is unusual. It is not true that people can’t do what I do. I don’t want it to be Karen does all these great things, I want it to be other people too. Yeah Karen’s amazing but so are you and so is Margaret and so is everybody. How do we as teachers, as facilitators, as leaders, as friends how do we create those spaces to allow people to do what is in them to do? I have found my space.

Conclusion

People get involved in the lives of people with developmental disabilities through different routes. Perhaps the most common avenues are via family ties and human service connections but, as Karen’s story suggests, the range of paths is much broader than we acknowledge or take advantage of. There are belief systems and lifestyles in the community which are compatible with the inclusion of people with developmental disabilities. Not only can people with developmental disabilities be included in a peace and justice community choir, but as our research is revealing, they can and do become part of churches, work groups, neighborhoods, small towns and recreation clubs. This involvement can come about naturally. Through ordinary people in natural settings people with developmental disabilities can be part of the community. We need to learn from those who are involved in such efforts how it is accomplished and what obstacles they face so we might be their allies.

Karen’s advocacy for people with developmental disabilities has its roots in her early experiences in a small town in rural New York but it has come to fruition through her life commitment to seek equality for people of color, the poor, women, gays, lesbians, and people with alternative life styles. Including people with developmental disabilities in the choir was compatible with her larger understanding of the inclusive society she wants to live in and work toward. Seldom do people in the field of dis abilities articulate a bigger picture in conceptualizing the struggles they are involved in. Especially now, with the heightened interest in diversity and multiculturalism, people working in fields related to disability need to build coalitions with others who are working to abate prejudice and discrimination in other arenas and learn to see their work as part of a larger effort of building a just, appreciative and accepting society for all people.

In sharing Karen’s thoughts and experiences with you I am not suggesting that Karen’s political and social orientation is the only view that is compatible with the natural inclusion of people with developmental disabilities into the community. While some will find her approach to life compelling, as she advises, everyone need not be like Karen. As future papers will reveal, we have met other people who are just as articulate and just as dedicated to inclusion as is Karen but with very different values and politics (ex. a conservative business owner). As there is room for everyone in the choir, there is a place for everyone in working toward the natural acceptance of people with disabilities into our communities.

As Karen’s words reveal, there can be great joy in inclusion and working toward diversity. We need more people to speak out about the emotional side of relationships with people with developmental disabilities. We need to share what it feels like to en joy the companionship of others and the sense of community that can be created around mutual commitment. Karen also points out the difficulties and the pain involved. As with all meaningful relationships, relationships involving people with disabilities in your life takes work and commitment. To have people with developmental disabilities involved in relationships helps them immensely. But Karen does not include people with disabilities in the choir to help them. She includes them for herself, for her own joy. She wants to make music and they want to sing.

References

Bogdan, R., & Taylor, S. Toward a Sociology of Acceptance: The Other Side of the Study of Deviance. Social Policy, Fall 1987.

Lutfiyya, Z. Tony Santi and the Bakery. In Lutfiyya, Z. Personal Relationships and Social Networks. Syracuse: Center on Human Policy. 1991.

Taylor, S. and Bogdan, R. On Accepting Relations Between People with Mental Retardation and Nondisabled People. Disability, Handicap and Society, 4(1) 1989.

Taylor, S., Bogdan, R. and Racino, J. Life in the Community. Baltimore: Paul H. Brookes, 1991.

This article was prepared by the Research and Training Center on Community Integration, Center on Human Policy, Division of Special Education and Rehabilitation, School of Education, Syracuse University, with support from the U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on disability and Rehabilitation Research, through Cooperative Agreement No. H133B00003-90. No endorsement by the U.S. Department of Education of the opinions expressed sho uld be inferred.