Suppose you were 35 years old and you still lived at home with your parents because they didn’t think you were capable of living by yourself? Or that you had to live in a group home with people you didn’t choose as your housemates and staff you didn’t hire to run the household? Suppose everyone talked down to you as if you were a little child? Or that you worked a 40 hours a week, and only got paid $45 for your entire week of work? What if you weren’t allowed to get married, even though you were in love with someone who wanted to marry you?
Sound impossible in this day and age? It’s not. There are many people in our country, close to 12.4 million, who experience one or a combination of these limiting life situations because they have a physical, mental or emotional condition causing difficulty in learning, remembering, or concentration (U.S. Census, 2000). Some of these citizens have physical or mental illnesses which affect cognition, and many have developmental disabilities, such as mental retardation, autism, cerebral palsy or another neurological condition. (The U.S. Census does not breakdown disability population figures by diagnosis, but by the following categories: sensory disability involving sight or hearing; condition limiting basic physical activities, such as walking, climbing stairs, etc.; physical, mental, or emotional condition causing difficulty in learning, remembering, or concentrating; physical, mental, or emotional condition causing difficulty in activities of daily living such as dressing, bathing, etc; condition that makes it difficult to go outside the home; and condition that affects the ability to work at a job.)
People who have developmental disabilities are not encouraged to live independent lives, even when many of them can. There are many reasons for this: overprotective families; an educational and social service industry that steers clients to be dependent and passive, rather than training them for independence; a social welfare system with built-in work disincentives for people with disabilities; a society that stigmatizes people who have disabilities as “less than equal” to those who don’t have disabilities (Mackelprang & Salsgiver, 1999; Olkin, 1999).
One of the hardest struggles is that last one — against stigmas held cross-culturally about developmental disabilities. Individuals who are “different,” be they of a different race, religion, physical look, or ability level, end up being stigmatized or seen as having a lower, discredited status, being “not quite human,” by the dominant cultural group in any society (Goffman, 1963; Hardaway, 1991). Developmental disabilities are repeatedly rated as one of the most stigmatized on the continuum of possible disabling and/or medical conditions across a wide range of world cultures (Olkin, 1999;Westbrook, Legge, & Pennay, 1993).
In order to address the prevalence of stigma towards disabilities and the necessity of future mental health and education professionals to become aware of and deal with their own stigmatizing attitudes, I have had students in my Drama Therapy with Special Populations class at Kansas State University rate Westbook, Legge, & Pennay’s list of 20 disabilities from least stigmatized to most stigmatized for the past twenty-four semesters (Fall 1999 to Spring 2011). Each semester mental retardation (the closest category on the list to “developmental disabilities”) is in the top three most stigmatized conditions as either number one, two, or three. The only conditions that are ever rated as more stigmatized are AIDS or mental illness. When they compare their class rating with the cultures surveyed in Westbook, Legge & Pennay’s study, my students discover that those cultures also rated those three conditions in their “top” three.
If attitude sampling is not proof enough of the stigma assigned to people with developmental disabilities in our culture, a simple statistic reported in the Kansas City Star says it all. Prenatal genetic tests can determine if a fetus has Down syndrome, a type of developmental disability caused by a chromosomal abnormality. People who have Down syndrome have three copies of Chromosome 21, rather than 2, giving them 47 total chromosomes instead of 46. Down syndrome is not a fatal or painful condition, although there are sometimes medical complications, such as heart conditions. Individuals who have Down syndrome can range in IQ from low to normal. When the prenatal test became common in 1989, 57 percent of fetuses discovered to have Down syndrome were aborted, and since then the percentage has risen (Bell & Stoneman, 2000; Stearns, 2004). Currently, it is estimated that ninety percent of the fetuses determined by prenatal test to have Down syndrome are terminated through abortion (Adler, 2005).
Not only are stigmatized people not accorded the same status as others, seen as inferior, evil, perhaps being punished for their sins or the sins of their fathers (Hardaway, 1991; Pelka, 1994), or as “defective” by medical model standards, many grow up to believe that those who have stigmatized them must be right and internalize a sense of shame and inferiority. Like many oppressed populations, they often become passive and helpless, because they don’t think they deserve better treatment than what they are currently receiving (Goffman, 1963; Mackelprang & Salsgiver, 1999).
Here are a few stories I collected in 1998 from members of STAND Together, a self-advocacy group for adults with developmental disabilities in the Washington, DC Metropolitan area, which illustrate common, every day examples of stigmatizing behavior they have received, in these cases from family members, care-givers, and helping professionals in their lives:
LG: When I was between the ages of 17 and 21, I went to live with my older brother and I was treated as a child and it was totally wrong to do that to me at that age. At that point, it wasn’t right, but I didn’t do anything about it. I didn’t like it, but just took it. I finally just moved away. It feels great to be treated like an adult instead of a child. It’s wrong to treat an adult with a disability like a child. An adult should be treated like an adult. A teenager should be treated like a teenager. A child should be treated like a child.
BH: Sometimes the counselor comes into my apartment to talk to me when I’m having dinner [and wants to meet about life skills and work issues]. I say, “Excuse me, I’m eating.” That’s ignoring my privacy.
MP: I want to tell you about staff who disrespected me at the place I worked, so you won’t ever treat anyone who you work with this way. [The workplace was a sheltered workshop/training center for people with disabilities.] At one point I was in Beginner’s Clerical. I was not feeling good one day and I called in like you would normally do when you’re not feeling good. They asked me to call back later. I did and I said that I still wasn’t feeling good. But my supervisor, she didn’t take no for an answer. She wanted me to come in to work. [MP went back to sleep after hanging up the phone.] I wake up and I’ve got the program specialist on one side of me and the supervisor on the other side of me wanting me to come to work! So to make a long story short on that one – that’s why I’m still afraid to get a job out in the community. I’m afraid someone’s going to come and drag me out of bed and take me back to work!
These three individuals, quoted above, have not remained passive and accepting of the stigmatized way they are treated. As members of STAND Together, one of the oldest self advocacy groups in the state of Maryland, they have learned how to speak up for themselves, protest ill-treatment, and work on changing attitudes and removing barriers to their full inclusion in their community. We’ll talk about their experiences with drama as a tool in their struggle later in the article.
Historically, nondisabled members of society have assumed that people who have disabilities are not able to care for or support themselves. Poorhouses were created in colonial America as a place to warehouse anyone from widows, orphans, or the elderly to people with mental illness, disability, or serious illness (Trattner, 1989). Until recent years people with disabilities, particularly those with developmental disabilities, were committed to institutions for the “mentally deficient.” Doctors would often recommend to families at the birth of a child with disabilities to not even take the child home, but to “send it away” (J. Glenner, personal communication, 1990; Makelprang & Salsgiver, 1999; Morton, 1983). For those who weren’t institutionalized, educational opportunities and jobs were not easy to get.
The terminology chosen to describe this group of citizens (as well as people with physical disabilities) suggests that they are incompetent. Hardaway says it is important to know that the word “handicapped” originated from the phrase “cap in hand,” indicating someone who is a beggar. Begging was one of the only ways that people not segregated in institutions who had disabilities were able to make a living when they couldn’t get a job (Hardaway, 1991). Employers assumed that people who had disabilities couldn’t do the work and often wouldn’t consider them as potential employees.
What does the word “disable” actually mean? According to Webster, disable means “1. to deprive of legal right or qualification: disqualify. 2. to make incapable or ineffective: to incapacitate, especially to deprive of physical, moral or intellectual strength. 3. a. to deprive of what gives value: impair in worth. b. to declare incompetent or invalid.” Impaired, another word sometimes used in place of disabled, means “to make worse, diminish in quality, value, excellence or strength: to do harm to.” (Webster’s Third New International Dictionary of the English Language Unabridged, 1993). None of these words sound very positive used as either a noun to categorize someone or an adjective to describe him. No one wants to be considered an ineffective, incapable, diminished, or invalid human being, especially when the disability condition one has usually only limits one small aspect of one’s life; however, that is what our language suggests happens.
The disability awareness movement which began in the 1960’s helped pass legislation, such as the Rehabilitation Act of 1973, the Equal Education for All Handicapped Children Act of 1975 and the Americans with Disabilities Act of 1990. These laws have helped create more opportunities in education, employment, housing, and access to the community at large for people with disabilities. In the late ‘60s and early 70’s disability advocates and social service workers brought suit in the courts to close state hospitals and release the residents to out-patient services in the community. This, plus spiraling medical costs, caused many institutions in which people had been warehoused to be closed, sending them back in the community to live and work (Anderson, Lakin, Manga, & Prouty, 1998; Mackelprang & Salsgiver, 1999).
However, just because opportunities for independence exist, doesn’t mean the people those opportunities were created for know how to access them or how to succeed once they get them. Statistics have shown that people with disabilities make responsible, hard working, reliable employees. However, statistics also show that a number of employees with disabilities lose their jobs, not because they can not do the tasks required, but because they do not have the social skills to fit into the workplace appropriately (Chadsey-Rusch, Linneman, & Rylance, 1997; J. Gingerich, personal communication, August 17, 1999; Park & Gaylord-Ross, 1989).
Others do not have the self-confidence to go after an educational or employment opportunity in the first place. There are a variety of reasons for this: they might not know how to be assertive; they might not have the support and encouragement they need from significant others; they might see barriers (legal or illegal) in the way that they do not know how to get around. In short, they have problems advocating for themselves.
Here is where drama comes into the picture: drama is the perfect vehicle for teaching assertiveness, problem-solving, and self-advocacy skills and for demonstrating and articulating one’s abilities, opinions, and desires to others. Through acting out a situation in role play, participants can learn how to identify problems, try out different solutions, and practice the solutions they think will work best. They can develop the self-esteem and confidence to believe they can be effective and succeed. Even more important, they can develop the social skills to get their questions answered, their needs met, and their day-to-day on-the-job or in-the-community conflicts worked through in appropriate ways. (Bailey, 1993, 1995; Sternberg & Garcia, 1994).
Why is drama so perfect? It is embodied, experiential, and active. Many people with developmental disabilities have difficulty learning abstract concepts through lecture and other abstract teaching techniques. Many learn better through hands-on, concrete, physical activities. In addition, drama incorporates narrative or story into instruction. Information is easier to remember when linked by narrative than when it is simply memorized by itself as individual facts (Cozolino, 2002; Herman, 2003). Information is also easier to remember when it is paired with emotions, particularly positive emotions or emotions that are meaningfully appropriate to the material (Jensen, 1998). Drama contains all of those qualities: embodied, experiential, active, concrete, hands-on, narrative, connected to emotions, with the added attraction of being FUN, so that the learning process is interesting and easy to pay attention to! (Bailey, 1993, 1995, 2010).
Young people with developmental disabilities may not understand the subtleties of social situations. Nondisabled children usually pick up many of the social cues and cultural constructs around them through observing interactions of adults and older children, repeatedly seeing the consequences of certain actions (Hall, 1976). Some children with developmental disabilities miss out on these cues and constructs. They might not notice nonverbal behaviors for a variety reasons, including attention deficits, attention overloads, or aural or visual processing difficulties. They might have difficulty with sequencing and, therefore, do not understand the relationship between an action that causes a particular consequence. Having missed observing the behavior in the first place, chances are they probably will not understand theoretical presentations about it. They may not have been given the opportunities to practice appropriate ways to interact socially because no one thought they were capable of learning them and, therefore, never reinforced appropriate behavior.These children need active instruction and practice in order to see, understand, and learn (Bailey, 1993, 2010).
When is the best time to start using drama to train students in social skills and assertiveness? When children are young and in school! Cindy Bowen, a registered drama therapist and transition specialist at Ivymount School, an independent school for multiply handicapped students in Rockville, Maryland, began using drama as a behavior management tool while she was a support counselor in charge of handling discipline problems. She found that when students had negative behaviors in class or on the playground, it was usually because they did not have the words to express their feelings or alternative ways to solve the situation that was frustrating them. She would take them to her office and get them to cool down. Then she would talk to them about what happened and what other options they might have used for dealing with the situation. Once they were able to identify these, she would have them act out the appropriate behavior until they felt they understood it and could use it successfully. Last, she would take them back to the classroom and let them practice the new behavior with the teacher (out in the hallway, not in front of the rest of the class), so that the teacher knew what solutions had been developed and could help reinforce them when the student tried them out instead of reinforcing the old negative behavior.
Cindy realized that this was the beginning of self-advocacy for these children and that its development was crucial to their success, not just in school, but in life. Since her experience as support counselor had proven to her the efficacy of drama as the way to “get through” to students on issues of behavior, she incorporated drama into all her later transition planning work.
In the U.S. students in special education are allowed to stay in school until they are 21. Their educational needs are guided by an Individual Education Plan (IEP) which is devised jointly by their teachers, parents, and, ideally, themselves. The IEP is re-evaluated at least once a year and new goals incorporated into it. As they get older, an Individual Transition Plan (ITP) is included to help them make that major transition from school to work. Cindy saw the IEP/ITP meeting as a place where self-advocacy was needed – allowing both the parents and the student to speak up for their wishes for the future. Did they want to have a specific kind of job? Did they want to live at home, in a group home, or independently in their own apartment? What were the steps that needed to be taken in order to finally achieve those goals? She helped students develop and practice a script so that they could communicate their wishes and desires to their parents and teachers.
Sometimes parents needed skills to work with a child who had unrealistic dreams. For instance, many teenaged boys express a desire to be a professional basketball player.Needless to say, this is not a realistic goal for 99 percent of them, disabled or not! The key to working with this desire, however, is not to discourage the student from having dreams, but to get them to identify what interests they have, what skills they have, what skills they can develop, and from there to think realistically about what kind of job they could get.Cindy found she needed to teach the parents – and did so most effectively through role-play – how to interact with their children about this topic. They practiced how to ask questions to elicit useful information from their child instead of shutting him down by saying, “No, you can’t do that” or “You’ll never be able to do that.”
Job skills from interviewing to personal hygiene to interacting with co-workers could be practiced in Transition Class through drama. Many students not only had difficulty finding words to express themselves, but also in understanding non-verbal cues that others were giving them. To address this, Cindy would set up dramatic situations in which they would practice identifying these through role play. For instance, she might act out different kinds of bosses who might be interviewing students for a job; she might act formal and polite, condescending, or rushed and impatient. A student would interview with her for the job and then have to assess with the rest of the class what she wanted the worker to do in the job and what kind of nonverbal information she was expressing during the interview which might indicate what kind of a boss she might be to work for.
One transition group, called “Express Yourself,” showcased the older students in dramatic presentations as they demonstrated behavior options to the younger students in order to teach social skills through action. “Express Yourself” students would brainstorm different difficult aspects of relationship communication: friend with friend, child with parent, student with teacher, employer with boss. From these, improvisational scenes were created – with both negative and positive behavior choices – and acted out for other classrooms.Cindy would facilitate and lead a discussion. The students watching would respond to what they thought was going on in the scene. Were the actors using a positive way of handling the situation or a negative one? What were some other ways it could be done? Through drama the younger students were able to pick up on the correct behaviors and generalize them to other situations. They would often use some of the words and behaviors they saw enacted in the scenes in their real life situations. They would ask Cindy, “Did I handle this like so-and-so handled it in the play?”
Presenting “Express Yourself” skits served as a wonderful self-esteem builder for the student-actors. They were suddenly “teacher for the day” and were able to share what they had learned with others. Another outgrowth was the “Express Yourself” students became positive role models and mentors for the younger students. Many younger children had never been exposed to the idea of being able to grow up and get a job. Suddenly they realized that “Hey, this older kid has a transition plan. He’s getting a job. I can do that, too!” (C. Bowen, personal communication, January 22, 2005).
Much of my work with young adults with developmental disabilities also took place in suburban Maryland. In my role as Arts Access Director at the Bethesda Academy of Performing Arts (now Imagination Stage), I created programming for children, teens, and adults with a wide variety of disabilities. One acting class, called “Act For Yourself,” was geared along the same lines as the Ivymount “Express Yourself” class, providing practice for young adults with developmental disabilities in assertiveness and social skills. We acted out situations they found difficult in their lives and explored who they were, what they wanted, and how to get their needs met in active, appropriate ways. We also explored how to stay safe in situations in which others might harm them, how to handle anger, and how to behave appropriately in dating situations. “Act For Yourself” was so popular and useful that I was invited to teach it for Montgomery College’s Challenge Program, a division developed to give students with disabilities who had graduated from high school pre-college level experiences on a real college campus.
My favorite experience using drama for social action was with STAND Together in 1998. STAND Together was sponsored by The ARC of Montgomery County (ARC was formerly an acronym for Association for Retarded Citizens, but has formally changed its name to be simply The ARC). They had heard about my drama program from enthusiastic participants and saw a creative, dynamic, and active way to raise staff awareness on privacy issues and basic human rights of residents in their group homes. Twice a month an orientation training (Introduction to Developmental Disabilities) was held for new staff members to address basic information about The ARC’s group homes, developmental disabilities, emergency procedures, health and hygiene and human rights of residents. Trainings had always been done via lecture and handouts. The information was communicated, but most trainees did not really understand the priority The ARC wanted given to respecting the residents as adults with individual needs and preferences. Often in the interests of time and efficiency or out of ignorance, staff would ignore residents’ choices, break confidentiality, or invade their privacy. This problem was exacerbated by the issue of frequent turnover of staff which is a common problem in all areas of the direct support profession serving people with disabilities (Larson, S.A., Hewitt, A.S. & Lakin, K.C., 2004). STAND Together wanted to create a role-play presentation to illustrate ways to handle privacy issues, so that respect and appropriate boundaries could be demonstrated clearly to staff.
My first step in approaching this project was two-pronged. I wanted to let the STAND members train me in what they felt were the most important issues to address – they, after all, were the authorities – and we all needed to know what the law said about current legal standards of individual rights, the procedures for compliance, grievance rights, and what to do in case of violation. We began by looking at the Health-General Article 7-1001 and 7-1002 from the Annotated Code of Maryland COMAR 10.22.07. Then we brainstormed their list of personal and privacy rights.
Identification and articulation are the first steps in self-assertion. Creating an atmosphere of trust and acceptance in which participants can speak honestly and openly about their experience and their pain was paramount. As the group shouted out ideas, I wrote down all suggestions in magic marker on large pieces of paper taped to the wall. I knew all ideas would not end up in the final presentation, but all needed to be acknowledged as part of the pot of material we would pull from. Even though some members of the group could not read, my act of writing down their ideas validated them and communicated the clear message that I respected them and took them seriously. (This list of rights is included at the end of the article.)
The next step was to collect personal stories related to the violation of these rights and to generate ideas of how these negative situations could have been dealt with more kindly, respectfully, and effectively. These stories were then shaped into fictional dramatic situations which we improvised. None of the scenes that ended up in our repertoire for the training were historical re-enactments of anyone’s real-life experiences. On one level this preserved confidentiality, but on another it freed the actors to try out alternative solutions to the conflict instead of sidetracking them into a re-creation of the way events had actually transpired. We could also exaggerate a little to make a point without being untruthful. The purpose of the scenes was, after all, to help create systemic change in the attitude and behavior of employees of an organization, not for the personal therapy of STAND members.
For each scene, we came up with the “wrong” way and a “better” way to handle the situation. The scenes were kept improvisational at all times, so the parts could be taken on by different volunteers. Here’s what one of the situations might have looked like if scripted:
JULIENNE, a staff member at a group home for adults with developmental disabilities, enters the living room and sees a stack of mail on the dining room table. She walks over, leafs through the pile, picks up an envelope, opens it, and takes out a letter and form. Then she gets a pen from the desk, comes back to the table and begins filling out the form, leaving the opened envelope on the table.
EVA, one of the residents, enters the living room and looks through the stack of mail. She sees the opened envelope, which has her name and address on it. She turns to JULIENNE with the envelope in her hand and says, “Who opened my letter?”
JULIENNE: (nonchalantly) Oh, I did.
EVA: Why? My name is on the envelope! See, right here it says, “Eva Jones.”
JULIENNE: I could tell it was that form from the SSI office and I knew you’d need help filling it out, so I opened it for you.
EVA: But it belongs to me. You shouldn’t have opened it.
JULIENNE: It doesn’t matter.
EVA: Yes, it does! It was for me!
JULIENNE: I knew what was in it.
EVA: But what if you didn’t? What if it was something else?
JULIENNE: Well, it wasn’t something else. It was the re-application form.
EVA: It’s my private letter!
JULIENNE: I’m only trying to help!
EVA: But you shouldn’t have opened it! Even my mother knows not to open my mail!
JULIENNE: (throwing the letter at EVA): FINE! Do it yourself!
This scene illustrates behavior a group home staff person might consider “helpful,” but which residents would consider condescending and an invasion of privacy. It was, of course, followed by a replay in which Julienne let Eva open her own letter, asked if it was the form they had been waiting for from SSI, and allowed Eva to ask for help.
A step above and beyond using drama to advocate for yourself and for others is teaching others how to advocate for themselves. In essence, passing on the power. After all, as the old proverb says, “If you give a man a fish, he eats for a day. If you teach a man to fish, he eats for a lifetime.” Deborah J. Zuver, a registered drama therapist in North Carolina, is doing just that through self-advocacy projects she directs through the University of North Carolina Clinical Center for the Study of Development and Learning. The U.S. Administration for Children and Families has designated this site as the University Center for Excellence in Developmental Disabilities in North Carolina.
Deborah has developed a self advocacy training curriculum called Acting for Advocacy (A4A) which is part of Project STIR (Steps Toward Independence and Responsibility).This program explores topics such as Knowing Self, Communicating Effectively, Problem-Solving, Rights and Responsibilities, and Self Advocacy and Self Determination with young adults who have developmental disabilities in the state. Next Generation Acting for Advocacy, an outgrowth of A4A funded by the U.S. Administration on Developmental Disabilities (ADD), targets high school students who are making that important transition from school to work. Through workshops conducted in the schools, students learn those all-important social skills that will help them get a job and then keep it.
Shifting the Power is another program that has developed from A4A and has been funded through ADD. The whole point of Shifting the Power is passing on self-advocacy skills to others in nearby states. The North Carolina training team works with local participants who have developmental disabilities in weeklong training sessions to develop self-advocacy skills. By the end of the residency the North Carolina team has helped the newly trained advocates create a concrete, visual action plan to follow in order to incorporate more self-advocacy into their organization and begin addressing local, regional, and state disability issues.
The A4A advocacy training team consists of 4 trainers, half who have developmental disabilities themselves. They present their information primarily through dramatic enactments. First, they show planned improvised scenes (the lines are not memorized, but the actors have practiced the scenario and know where they are headed with the situation). Then Deborah, as the facilitator, will freeze the scene and engage the audience in a discussion about what happened. Sometimes the actors replay the scene based on audience suggestions. Sometimes audience members are invited up on stage to try out a new solution or re-enact one that they’ve just seen demonstrated.
Deborah says, “This kind of approach is different from trainings in which someone stands up and lectures about skills and then has the students passively listen or imitate.They can try out the skills themselves. Also, watching the enactments is like listening to a story. The information is put into context as well as action. The information is modeled by peers with developmental disabilities which makes it more real and more realistic.” (D.J. Zuver, personal communication, January 5, 2005).
In addition to using her trainers who have disabilities as actors, Deborah involves them in leading the group discussions. She has them present the power point slides which provide visual illustrations to concepts in the training. They also are able to share their personal successes, if they choose. One of the trainers is very proud of the fact that she is the first self-advocate she knows who has bought her own condo and drives her own car! This makes the trainers very viable role models and adds power and validity to the message they bring.
Deborah stresses the importance of including an emotional component in this kind of advocacy training. She says that it is often left out of many social skills and self advocacy trainings. “It’s almost like professionals think members of the DD population can’t handle their emotions, but many can. They just need practice and the opportunity and the support!” She goes on to say, “Brain research shows that emotion and memory are linked. And drama allows emotions to be expressed in a clear, contained manner.” When participants are allowed to explore their ideas and feelings in a safe environment, “They can have insights and come to new understandings.” In fact, Deborah says her favorite moments in workshops are when she “sees the ‘light bulbs’ going off over peoples’ heads when they are understanding a concept for the first time or realizing that they are capable of something that they didn’t think they could do before.” (D.J. Zuver, personal communication, January 5, 2005).
Each of these examples of drama cited above acknowledge Paolo Freire’s pedagogical philosophy of starting with the student, as well as the theatrical spirit, if not the specific methods of Augusto Boal who believed in incorporating the audience as “spectactors” into the exploration of ideas theatrically. As an oppressed minority, people with developmental disabilities lack confidence in themselves. They have been “domesticated” into being passive, dehumanized, and marginalized by the “non-disabled” members of the culture. Instead of lecturing at them and keeping them in the one-down position, through drama we can join them and dialogue with them, raising their awareness and self-esteem, providing them with the skills to break their chains of oppression, so they can see themselves as “normal,” equal, respected citizens in our community, and, as a result, take on those roles. This, then, becomes a real win-win situation. When they begin to have power over their lives, they can contribute to the diversity and strength of the community at large. The community can only be enriched when more of its members are active participants rather than passive “burdens.”
List of Privacy Rights Generated By STAND Together Members, 1998
I have a right to:
- Choose my own activities.
- Choose my own job.
- Choose my own friends.
- Make my own decisions about purchases.
- Make my own decisions about life choices and personal style, such as hair cut, clothes and jewelry to wear.
- Take appropriate medication that helps me function well, but doesn’t over-medicate me.
- Ask for help and accommodations if I need them.
- Be accepted for who I am/for myself.
- Have my parents “let go” and allow me to grow up and become independent.
- Speak for myself and not have other people speak for me.
- Be talked to at my level so I can understand and to be able to ask questions without being treated impatiently or as if I’m “stupid.”
- Be talked to as an adult, and not condescended to or talked to like I’m a baby.
- Have people talk directly to me and not to a family member or staff person who is with me as if I wasn’t there!
- Have my confidential information stay confidential.
- Be disciplined by staff in private, not in front of everyone else.
- Have privacy on the phone.
- Not have my mail opened by staff or anyone else.
- Have my personal space and personal living quarters respected.
- No one should enter my room without knocking and asking permission.
- No one should come into my room while I’m not there and rearrange things or change things without asking.
- Have a private sex life.
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