I have been involved in the disability movement for almost 20 years in many different ways. The issue of relationships has been my main concern throughout this period. As a child, I was labeled "mentally retarded", which affected my relationships. People thought I was different. My parents put me in special education at a school for children with disabilities. I was isolated from other kids who went to regular schools. As a result, I didn't get to have anyone that I considered to be a best friend. I spent most of my time out of my neighbourhood, which meant people didn't get to know me - the good things about me. They only knew me as a retarded child and naturally didn't want to have anything to do with me.

This is what this article is going to be about. Mine is not an isolated story. Many people with disabilities that I know have had to go through the same thing because of how we got labeled I'm going to tell you why relationships are so important for people with disabilities, some barriers they experience, and some ways they can make friends.

Why Friends are Important for People with Disabilities
For the Same Reasons as Everyone Else
Friends are important for people with disabilities for a lot of the same reasons that they are important for other people. For example, when people with disabilities have a personal problem, we don't want to have to talk to a professional about it, but rather close friends or an intimate partner. People with disabilities need friends to hang around with, to do things with, have fun with. People with disabilities need friends who share common interests, like hobbies, movies, and volunteer work.

People Don't Think we are Capable of Contributing to Friendships
In addition to these everyday reasons, people with disabilities need a range of friends due to the labeling and assumptions that are made about a person who has a disability. We are discriminated against because of how people perceive our disabilities. It's important to show people that we can contribute to a friendship because most people think that we don't have anything to offer. Because of how we have been labeled, it's harder for us to make friends because we have been judged as not being capable.

As an extension of this, society does not think most people with disabilities are interested in or capable of having intimate partners. Most people I know through my work in the disability movement and in society at large are interested in having intimate partners at some time in their lives. We see other people having relationships and we dream about this for ourselves. Even if some people do not have long term relationships, like marriage, having intimate relationships are still very important for physical and emotional reasons.

Weak Family Ties
Many people with disabilities who grew up in the 40's, 50's, and 60's are no longer in touch with their families. Our families have segregated us in institutions and group homes because they believed in the system. There is now a lot of pain on both sides - families feel guilty and people with disabilities feel we have been robbed of the right to grow up in a normal family situation and do family things. Our families deprived us of the right to be part of regular schools and recreation programs and other opportunities in life. For me, many of my friends have now become my family.

More recently, many people with disabilities continue to experience overprotection from their families. Because of labeling, many families continue to have low expectations for people with disabilities. For example, many families believe that their son or daughter will never be able to live on his or her own or with friends. Fear that their son or daughter's needs will not be met takes priority over the son or daughter's need for independence and friendship.

People with Disabilities are Vulnerable to Abuse and Need Friends
People with disabilities need a range of friends due to the vulnerability that comes from having a disability. People with disabilities want to be active in their own communities and with that comes some serious risks. For example, because of our lack of experience, we can be taken advantage of by people who think we are poor and defenseless. Because we like to trust people, we don't believe that people would rob us or want to physically harm us. But this has happened to many of us. We have been harmed very deeply by people who say they are our friends. This is why it is so important that we have real friends to support us and to help us learn how not to be taken advantage of, especially as people begin to live, work, and participate in leisure opportunities more independent of our families and formal services.

People with Disabilities Need Support in Finding Jobs
Many people with disabilities who I know are currently either unemployed or in sheltered workshops collecting disability benefits. People in workshops have difficulty meeting, making friends with, or participating with people who have not been labeled Where we spend our days affects who we will meet or not meet.

We have had no choice but to rely on the formal system to help us find jobs. But this is not working very effectively for most people. John McKnight, an advocate and educator from the U.S., believes we should be relying more on the community and informal supports. For example, one job I got happened because a friend of mine told me about the job. She spoke to the Executive Director on my behalf and encouraged the employer to contact to me. I got the job!

Some Barriers to Friendship and Relationships
Labeling
I've already mentioned labeling and some of the problems it causes. If people saw us as capable people, then a lot of the things that happen to us would not happen. So labeling is at the very root of the problem. This is why our work in the disability movement has focused so much on labeling and how to get rid of it.

For example, the People First Movement, a movement run by people who have been labeled "developmentally handicapped", advocated for a name change of associations that were calling themselves Associations for the Mentally Retarded. The new name for most associations in Canada today is the Association for Community Living. This change came about as a result of People First members daring to tell their stories in public. People were moved by our stories. This helped them to think about the right of all people to live in their own communities, free of labels, and to get the necessary support, including having good strong relationships with people without labels in our communities.

Another example of our work to stop labeling is with the school system. In the past, children were given a label like (trainably mentally retarded) or EMR (educably mentally retarded) to get support. The disability movements pushed for the idea that no child should have to be given such a label in order to get an education and support. For the past few years, I have been working as an education consultant with a high school. I work with students with disabilities and their teachers who want to provide a better opportunity for students with disabilities to participate in regular classrooms with the other students, be involved in all the regular school activities, and develop relationships. By telling my own story and letting them see how I have succeeded, I provide a model for the students with disabilities, the regular students, and the teachers. We have ongoing discussion groups with everyone involved about making friends at school and having friends in the neighbourhood. I get everyone to think about what it would be like for people with disabilities not to have friends or to have other people making decisions for them. They would not want that for themselves.

Parents are not the only ones who are overprotective. When teachers place a child with a disability in a segregated class or segregated school, this can be overprotection, and it has an effect on friendships. When people with disabilities participate in Special Olympics rather than community teams, clubs, and programs, this is overprotection, and friendships are affected. Even friends themselves can be overprotective. For example, recently when I wanted to experiment with a dating service, because nothing else seemed to be working, some of my friends were very outspoken against it.

Segregation
A direct result of this labeling has been the isolation and segregation of people with disabilities. People have been segregated in a variety of different ways. The most extreme example is where people have been forced to live in large institutions, where they are controlled and punished with all sorts of treatments because their behavior. Most people with disabilities who live in institutions never get to see the outside world. Their education, work, and leisure all took place under one roof. More recently, due to government policy changes, these institutions have downsized, and some have closed. This means more people are now living in the community.

However, many people who are living in group homes are also isolated from their communities. Most people with disabilities living in group homes or other community residences only participate with others in their group home, such as community outings and vacations. Decisions are made for them such as who their roommates will be, which day program they will attend, and what leisure experiences they will participate in. Even though they are supposedly "living in the community", in a group home that looks like a regular house, they still don't have a chance to be integrated or be a genuine part of the community.

Paid People
I know many people with disabilities who most of their relationships are with paid staff and other people with disabilities. We all need some paid professionals in our lives, like doctors or home care workers, but when we only have paid support, then we don't have anyone just to be a friend. In the lives of people with disabilities, most people have been paid to provide a service, but those services usually mean that a paid person has a right to make most of the decisions for people with disabilities. Many staff do not understand the meaning and importance of empowerment.

Furthermore, society has assumed that people with disabilities should be placed in services where paid people can care for their needs. It is the best place for them, because society does not believe that the needs of people with disabilities could ever be met through meaningful integrated living and friendships. Society assumes that people with disabilities only need to-one programs such as Best Buddies and Leisure Buddies often reinforce that all people with disabilities need are volunteers. Because of this ignorance, most people do not realize that people with disabilities are no different than anybody else, and need real friends just like other people.

Poverty
Most people with disabilities are living on a disability pension. This means we have little money to get around to see people or go on holidays with friends. A lot of people with disabilities sit around home because they don't have enough money to go anywhere else. We barely have enough to pay the rent and bills, and sometimes we don't even have enough for food. This restricts our lives in so many ways. People might think that we live well because we get a pension and a drug card, but this is a fixed income, and it usually means that we don't have a lot of benefits that other people have.

Poverty is therefore related to lack of relationships, because lack of money often results in isolation. People with disabilities are not the only people who experience this kind of isolation. Many other people in our communities are living in poverty, like single mothers, youth at risk, homeless people, and unemployed people. All of these people experience hardships in their lives, isolation, and relationship difficulties.

Ways to Make Friends
I don't want to be negative here, only focusing on barriers to friendships and relationships. Instead, I want to share with you a variety of strategies for making friends that I have either seen with others or tried myself.

Volunteer Work with the Disability Movement
In the disability movement, I have made a wide range of good friends and acquaintances. I think this has happened because we believe in a common goal and like to spend time together. I really enjoy being in the company of other people who have shared experiences with discrimination and who are willing to share their stories and listen to our stories. This includes people with disabilities, but also others like parents, and even professionals who share our goals.

Some people think that a disability movement is a segregated movement. It is true that we segregate ourselves at times. Some people with disabilities segregate themselves for a variety of reasons: when we feel the need to discuss issues that affect our lives so that we can make decisions about how we are going to get the message out to people; when we feel the need to make decisions in our own movement; and when we feel nobody will listen to us, what other choice do we have? People have to give us a chance. It is possible to support both the integration and the self-advocacy movement at the same time. We do not see segregation in schools, work, or recreation activities being the same as segregation in our disability movement. We choose to meet in a segregated way in order to plan ways to achieve our advocacy goals.

There is never a guarantee that friendships will happen. A lot of people with disabilities will always need support in learning how to make friends. Some people have great difficulty because they are not verbal and other people with disabilities have problems socializing with people. For a lot of people with disabilities, the self-advocacy movement is the only place where they are assured to have a voice, they are not labeled, and they feel free to express themselves. Being involved in a disability movement gives people the opportunity to learn about issues and how those issues affect their lives; and to learn skills, such as speaking out, participating in decision-making, and running meetings. These are important life skills that can contribute to both their relationships inside the disability movement and outside.

Circle
A circle is one of the ways that I have chosen to strengthen my social network. A circle is a group of people who try to be there to support me in a way that I feel I need to be supported. The circle respects my right to make my own decisions. I chose some people whom I felt would be supportive of me and some people wanted to join because they value me as a person. Some people joined the circle because they were friends with someone in the circle. No one is my circle is a professional in my life. Having my own circle has helped me to strengthen some old friendships and make some new friendships. Not everyone in my circle has become a close friend, but many have. People in the circle often become good friends because they have an understanding of what I have been through and they also begin to feel that I would be there for them as well. We spend a lot of time together; for example, one Labor Day, a circle member invited our entire circle to the cottage for the weekend. Another time, my circle assisted me in organizing my first big birthday party and it has now become an annual affair. Another time, we all went to Harbourfront for a boat tour and day of story telling.

I have also become involved in other circles. I am currently on two other people's circles in the building where I live so I can share my expertise about circles with others. As well, having a circle has also broadened my network outside my circle.

Living in a Co-op
I didn't know much about cooperative housing, but some parents I was friends with were thinking about it for their children with disabilities. I heard about it because they thought it would be a good place for me to make friends and assert myself as a community organizer. I have learned that cooperative housing is not just about affordable housing. It's about belonging to a membership, making decisions together, and learning about how we take charge of our own homes.

Through these experiences, I have gotten to know people as friends. It's the first time in my life when I can actually say I know my next door neighbours and that creates a good social atmosphere. We get together to have parties or other social events where we just enjoy each other's company. I often get invited to friends' apartments for tea or coffee. We often go to movies. We take up a collection every month and then decide which Tuesday we are going to go and see a movie. We have potlucks in the community room. Sometimes a smaller group of friends will have a potluck in their apartment. Finally, we have an anniversary party every year to celebrate the beginnings of our co-op.

In my community, I don't get labeled I am recognized as Patrick Worth. People appreciate my contributions and everybody is recognized as having gifts. They think I am a great speaker, a thoughtful writer, a good story teller, good at getting people to think about their own problems and ways to relate it to others, good at showing compassion to others, and good at helping people understand how we all need each other.

My community is not perfect. We have lots of problems, but we try to work out our problems together. For example, I live in a multicultural community. I didn't know very much about multiculturalism before, but it has taught me something very important. A lot of people have problems that are similar to the problems that people with disabilities have. It is good to know that we are not alone and we can problem-solving together.

Church
Through a friend of mine, I heard about a church that was looking at ways to try to build a stronger community. I got invited as a guest speaker to talk about my own story. At first I was nervous because I had never spoken in a church before. But I know my story is important to tell, so I took the risk. People were overwhelmed by my story. I got a thunderous applause. They were shocked to hear that I didn't learn to read and write as a child because people didn't think that I could do it.

People were actually crying. I think it helped them to get in touch with their own lives-perhaps a time where they felt someone was being unjust to them. They admired my accomplishments and invited me to join their membership. I decided to join and I have been involved with this church for over three years. We have no minister, we do the work ourselves. We invite a variety of guest speakers to talk about social issues such as community building.

I had never been a member of any church before and I didn't think it was important. But now it has helped me to realize that I could have a wide range of friends. A church can also be a place where people have the opportunity to meet each other, become part of a membership, and participate in a lot of important activities. We have social events such as Cabaret night where we dance to old music. We have regular potlucks at church and "dinners for 8" at people's homes where people get matched according to interests. We have coffee hour after church where people can talk to each other and the guest speaker, and we never forget to celebrate someone's birthday. When I was sick in the hospital, I got a call from the church and they all sang "For He's a Jolly Good Fellow" over the phone and several church friends visited the hospital, pretending they were my siblings, to get past the rules.

We also work on important social issues. We have organized an event about homelessness, including a supper called "Out of the Cold". We invited the media and members of parliament to endorse our position that there doesn't need to be any homeless people in Toronto. Working together for a common goal helps to draw people closer together. When people finds others who have the same concerns, like when People First members talk together about labeling, it helps to build a movement based on friendship. People who are involved in churches do the same thing. They work on many social issues housing, employment, gender issues, and at the same time build strong relationships with fellow social activists.

Work
As I said earlier, many people with disabilities work in sheltered employment and rely on disability pensions. We need to work in a supportive environment where we can make enough money to support ourselves and have a good social life as well. We feel dignity when we get real pay for real work. We have the same needs as other employees-the need to collect a pay check, not a disability check; be accepted by our co-workers; have a sense of belonging to the workplace; feel that we're making a contribution; and be able to complain and problem-solve about everyday work problems.

People with disabilities have success in their community jobs when they are not only recognized for their contributions at work, but are able to socialize with their coworkers This must not only happen at coffee breaks and lunch, but after work as well. Many of the community jobs that people with disabilities have are not always ideal. They are unsafe, monotonous, low paying, and have poor benefits. The competitive value of the workplace also expects them to produce faster and better than many are capable of. Many workplaces are only interesting in making a 'buck.'

So the only thing people might look forward to are the social relationships that come from the job. However, given the nature of these work environments, these may not be the best settings for community building and friendship. On a more positive note, some employers have learned to have compassion for people with disabilities. For the small percentage of people with disabilities who are able to access community jobs, they may in fact be with more humane employers. Hence, the chance for relationships and friendships outside of work may be possible. So finding workplaces that have a social justice perspective would be a good place to start. Working for an employer who doesn't understand the needs of people with disabilities, and the importance of community responsibility, would be bad work situation for many people with disabilities.

A Final Word
It should have become clear in this article the difference between acquaintances and friendships. You will not personally get to know someone who is an acquaintance. There are many people in my life who I only see once a year and its not likely we will be close friends. There are people I just do business with, but I really don't know them. Nevertheless, acquaintances are people who you still have a relationship with, so it still needs to be valued. A friend is someone who I am going to get to know for personal reasons. A friend may be someone who I become closer with on a more intimate with as time goes on. An intimate relationship is one where there is a very strong bond.

People with disabilities, not unlike other people, need a range of relationships from acquaintances, to friends, to intimate partners. In order for this to happen, we need a chance to participate within the community; to meet people with understanding and compassion; to get beyond labeling and recognize people for their strengths and gifts; to value real friendships over paid relationships; to place relationships ahead of the almighty dollar.

Journal of Leisurability
Volume 26 Number 23
Summer 1999

Pat Worth lives in Toronto, Ontario. He has been actively involved as a self-advocate, advocate, speaker, and consultant in the disability movement for over twenty years in Canada, United States, New Zealand, England, and Singapore.