Over the centuries and in almost all cultures, people with severe handicapping conditions have often gotten the short end of the stick in almost every setting imaginable, from institution to community. We will briefly reflect on institutional settings because the issues of oppression are so clear. During the 19th century, the main service response was the development of the large state hospital or institution. Georgia developed an institution in Milledgeville that vied to be the largest in the world. Originally legislated as a “state lunatic, idiot, and epileptic asylum” in 1837, it has operated under several names over the years including the Georgia Lunatic Asylum, Milledgeville State Hospital and Central State Hospital (CSH) (Cranford, Dr. Peter G., But for the Grace of God: Milledgeville!, Great Pyramid Press, 1981).
While the original concept of asylum had the best in mind for people and hoped to cure them, CSH, like others, grew into a multi-purpose institution attempting to respond to every kind of ill. The hospital’s coroner, retiring in the early 1980’s, remarked that CSH was so large and its wards so poorly ventilated and uncomfortable that the death rate from the late 1950’s through the 1960’s could be predicted by the daily temperature. There are thousands of people buried on the grounds, many in unmarked and unrecorded graves.
People were defined as patients, inmates, students, clients, and later as residents. They were often moved from ward to ward with few or no possessions. They had few or no friends, extremely low social status, and great poverty. A service that aspired to cure by means of environment and moral treatment actually became unconsciously brutalizing by taking people out of their communities and eliminating their everyday choices, by responding poorly to their need to learn and grow, and by cutting them off from their family, friends, and other community members. Dr. Peter G. Cranford wrote in his definitive history, But for the Grace of God: Milledgeville!, “It (CSH) has been visited by fire, disease, flood, earthquake and war… and by its own special horrors… there is still more evil than good men and women will wish to continue to tolerate.” The negative outcome of mass institutionalization is not unique to Georgia. The problems that have plagued the people living at CSH are mirrored all over the world where such institutions developed.
What can be done when a person’s situation becomes so life-defining that some (or all) of the bad things described above happen? We rarely find easy fixes. We do know, however, that most people benefit from envisioning a positive future in a process that includes friends, family, neighbors, advocates, and other stakeholders. We have found that almost all good advocacy aspires to accomplish change in one or all of the following five areas.
Our Five Aspirations
Being present in the community/sharing places with others: We believe that it is important for people to live in typical homes or apartments and to use their community to get the things they need for everyday life A child should go to his or her neighborhood school. Adults should have a regular job. Neighborhood churches, stores, and restaurants should be used instead of service system provided replacements. If people are not present in their communities, we encourage them to dream about what they want. Sharing dreams with others is often a gateway to life in community with others.
Protecting rights and promoting autonomy/making choices and having choices to make: The people we serve have all of the rights as any citizen in this country, in addition to other rights designed to protect specific populations. People who “have their rights” usually have a multitude of choices to make about where they live, work, eat, shop and play. We often find people who have little choice in their everyday lives. People who have few or no choices usually have restricted rights. We want people to understand their rights and exercise their choices.
Enhancing competency/developing abilities: We believe that it is important for people to learn and develop their skills or to use and maintain the skills and knowledge that they have. For some, this means getting formal education and training, for others this might mean maintaining the ability to eat or dress independently. Others still might need to learn positive responses to their own emotions.
Status enhancement/improving reputations: We believe it is important to break the circle of stigma that often ensnares people with severe disabilities. Pejorative terms which derive from clinical labels like “idiot,” “imbecile,” “moron,” and “retard” symbolize the way our culture creates stigma for large groups of people with life-defining problems. One man, institutionalized in a mental retardation institution for over twenty years because of severe physical problems, recently stated that people never see him for who he is. They always see him as a living vegetable without the intelligence to make any choices and without the ability to do anything for himself. We encourage and expect others to see the person and not the negative labels and images often associated with people with severe handicaps. The way a person is seen can easily make the difference between life and death, as when a social worker once interpreted a baby as being “less than a vegetable – at least a tomato has color” and worked hard to implement measures that would end the baby’s life. Once this image was countered, this baby found his way into a loving family where he has thrived.
Community participation/growing in relationships: We believe that people should not only be present in communities, but that they should be participating members in community. The aspiration to have friends and to be a friend is almost impossible if typical places are not shared with typical people. Community presence and participation, then, are almost preconditions for meaningfully exercising choice, developing abilities, and improving reputations.
What Advocates Need
To effect positive change in the above five areas, we must often advocate for change in our communities, change in people’s behavior, and change in human service programs. This is a tall order. When friends, family, neighbors, advocates, and other stakeholders work to develop a vision of positive change, they need the proper information, authority, and tools to get the job done.
Information: What information do we need to get, find, share, reinterpret, or give away in order to reach our goals? A small bit of crucial information is often helpful in reframing a problem as solvable. For example, for years families with young students having disabilities were told that their children couldn’t go to the regular neighborhood school. They were told that this was simply not possible and a fortune in resources was diverted to segregated specialized schools. The inclusion movement started with the idea that it’s all right for children with handicaps to go to their neighborhood school and be educated with their age peers. In other situations, knowledge of a funding stream, law, program, or procedure might make a huge difference in an advocacy effort. Paid advocates often have to help interpret or convert information in ways that are useful to people in general. This might mean publishing an issue paper helping to clarify a particular topic or reinterpreting service system provided data into a form that an advocate can use in a specific situation.
Authority: Where is the authority in a given situation? How can authority be given back or reestablished with the person or advocates? Both formal and informal authority are powerful in creating positive change. The formal authority of a law, statute, or court case can create opportunity for a person or a class of people. The Americans with Disabilities Act (ADA) has effectively reframed how typical environments are expected to respond to people with disabilities. Following the school example from above, parents can informally seize authority by having high expectations for inclusion of their children. A school principal, convinced by parents to move toward inclusion, can radically change the nature of a school and positively influence hundreds of children.
Tools: What resources are necessary to create an accomplishment? We encourage a broad interpretation of the word “tools.” For one person, it might mean getting a wheelchair or other piece of assistive technology. For another, it might mean getting a lawyer to sue (using authority) for the proper service (information).
Information, authority, and tools are obviously dynamic and interactive. How do we effectively organize them to move forward with our five aspirations?
Strategies for the Organizer of Effective Advocacy
When working to envision a positive future in a process that includes friends, family, neighbors, advocates, and other stakeholders, we can count on certain strategies to be consistently helpful. It is important to work in ways that are “win-win” and which in and of themselves “do no harm.” Anyone attempting to catalyze such an effort can be helped by reviewing and using the following four strategies.
Work through well connected people who have a stake in your issues: If your group could use help from an official and no one has a contact, look at who you all collectively know until you find someone who can make a powerful introduction. Do not overlook family, close friends, politicians and influential business people to help you maneuver into position. You might work for weeks to get into someone’s schedule. If your introduction comes through the a corporate officer’s mother or favorite golf partner, you will get in the door quicker and your issue will get more attention because of the way you were introduced.
Depend on trust for credibility to get things done: In true communities, people do business on the basis of trust, symbolized by the handshake. Service systems depend on education, rules, regulations, and credentials. Universities depend on education and publication. The kind of change we want ultimately depends upon trust so always try and work from this timeless person-to-person foundation.
Assume that everyone cares about your issue: Be trusting of people and expect them to care. If we assume that everyone cares about our issue, we give them the opportunity to get on our side. When you notice that someone doesn’t care about your issue or is actively working against you, the best response if often to be polite and then move on in your search to find allies. If possible, always leave the door open for someone to change their mind.
As an organizer, come, uplift, organize, and leave peacefully: Remember that at least one person will be involved in this advocacy effort for the rest of his or her life. As an organizer, you measure your work by how well things work after you are gone.
Good things usually happen when people get together to envision and advocate for a positive future by using community building strategies to accomplish clearly articulated aspirations using the proper information, authority, and tools. Obviously, good things don’t always happen. Using a method like this, however, insures that there will at least be allies present to stand up for the right things and hopefully stop bad things from happening.
The principles used in this article are based on the work of Connie Lyle-O’Brien, John O’Brien, John McKnight, Beth Mount, and Wolf Wolfensberger.