Advancing Individual, Not Professional, Choice

Advancing Individual, Not Professional, Choice

About the author: Rick Eastin has been on staff with Evangelicals for Social Action in Fresno, California since 1992. He is a ministry associate of Joni and Friends Central California, and the primary keynote speaker for many of their training events. Rick also founded and directed The Cornerstone (1987-2002), a Christian education and respite program for adults with mental retardation and their caregivers.

My name is Rick Eastin. I was born with cerebral palsy and as a result of my disability I attended special classes for persons with mental and physical disabilities from the age of 3 to 14. My time at the school was, in many ways, a painful experience because my own disability impacts me in three different ways: physical, emotional, and in my ability to learn. Physically, I have a hard time walking and talking. As a kid, I behaved in some very awkward social ways that caused my peers who were just physically disabled to ostracize me. I had trouble with stress at times, overreacting in ways that aggravated rather than resolved the situation. I still have a very difficult time with things like spelling and punctuation.

Although my early education was in segregated settings, I had limited contact with persons with mental retardation. They considered placing me in a class with persons who are mentally retarded at one time. I told them, “I’m not going in a class with those ‘retards’”. My views began to change as a result of a chance encounter with a young woman on the playground. I was surprised to learn that she was 18 and came to understand that some of my fellow students would not leave that school until they were 21. I began to appreciate that many of us have real limitations and that ignoring them was unrealistic. I have continued my quest to better understand people who are retarded and their families.

My academic and social skills improved about the time that I was ready for high school. I was mainstreamed into the regular ed. classrooms for most of the day. I became more independent when I learned to use public transportation and I began to expand my social circle. Eventually, I earned a BA in social work. I have also drawn upon what I've learned from a number of friends including a Sunday school teacher and a ministry team.

Since 1979 I have been, in various capacities, involved in working with adults with mental retardation. Most of my involvement has been in the Christian community. However, I have sought to study and understand both what has been done historically and what is being done currently in the human services sector to serve persons with this disability. One of my major concerns about where I see services going for people with mental retardation is that while there is much talk about giving them choices, in reality we are ignoring what these individuals really want.

We have abandoned the normal stage developmental model of understanding mental retardation and replaced it with what is known as the functional skills and/or the “top-down” model. It is based on research that was being done at university levels that demonstrated that people with mental retardation could learn to do things previously thought too difficult. Through the use of behavior modification, persons with moderate or severe retardation were being taught to do complex assemblies. This same approach is used to teach daily living skills like toileting, eating and personal hygiene. Those who hold to the "Functional Skills" view, support teaching individuals to perform tasks even though they may not have any comprehension of what they are doing or why they are doing it. They also work to eliminate behavior that the mainstream society does not applaud. All of this is done so that these people can become integrated into the mainstream community life. We reject the developmental stage model because we do not like the results that it yields.

The behavioral approach to developmental services is directly related to Wolfensberger’s principle of normalization. The focus of normalization is on providing services in the most culturally valued way possible. The hope is that it will result in persons behaving in ways that are esteemed by the general culture. According to Dr. Wolfensberger, it is not enough to ask people without disabilities to accept persons with mental retardation; for true acceptance to occur the person without the disability must experience the encounter in a positive way. Normalization asserts that all persons who are mentally retarded/developmentally disabled should be socially integrated into the mainstream community. They should be placed in regular schools, jobs in the real world, and be part of non-disabled groups in regards to every aspect of their lives. The advocates of this movement understand that many of these people will need ongoing support to participate in integrated settings.

An important facet of normalization is called the “dignity of risk”. Wolfensberger advocates for exposing people to challenges in which they may succeed or fail. The purpose of this is to give them the opportunity to learn from these experiences. However, we need to let people experience a “dignity of risk” within the context of their intellectual development. This is how we treat persons without disabilities. For example, we would never say it’s all right for a child of three to go to a downtown city unsupervised. However, if we fast forward to that person being fifteen, it would be perfectly legitimate to expect that the person would be able to be downtown independently. Persons with disabilities are often exposed to risks that exceed their ability to understand. Because they cannot understand, they are not able to appreciate the value of the opportunities being presented. In some cases, they are, in fact, exposed to risks that are even beyond their ability to keep themselves safe as well. The reason this happens is that in our social interaction with others many of the judgments that we have to make occur in situations that are unplanned. I am not saying that a person with a mental disability should not have these opportunities; I believe that they should enjoy the same opportunities that we all have. They should also have the supports necessary to empower them to be as successful as possible and to keep themselves safe.

Another part of this ideology is to treat persons with mental retardation according to their chronological age rather than their mental age. This approach often creates problems for persons who are mentally retarded/developmentally disabled. Consider, for example, supported employment. According to the supporters of social integration, sheltered work environments are indefensible. (McLoughlin Garner and Callahan, 1987). However, research done with persons who are mentally retarded in the form of interviews, shows that many of these individuals prefer sheltered workshops over employment in mainstream society. In the growing enthusiasm for programs for supported work, many clients have been more or less forced to leave sheltered workshops to accept work placements in the competitive economy. Because many of these people left all of their friends at their sheltered workplaces, it is common place for them to express great unhappiness about their new and improved lives. Some clients who resist their counselor’s pressure to enter supported work are openly threatened or strongly persuaded to comply. This is all in the name of serving them and improving the quality of their lives, with little regard to the individual's perception concerning their own well-being. (Edgerton, 1990 p.152)

This philosophy also impacts the families of the developmentally disabled. Often times these parents are seen as overprotective. As a person with a physical disability myself, I personally know what it’s like to have family members who are overprotective. However, the concept of over-protection has been greatly misused and abused when it comes to persons with developmental disabilities. Most parents of the severely handicapped are primarily concerned with their child’s welfare from a developmental viewpoint as opposed to a behavioral one. The developmental model says we learn in stages, one stage builds on another stage. As a person moves from one stage to another his understanding is expanded so he is able to understand subject matter of a more complex nature and perform tasks accordingly.

The social integration movement is based on two different ideologies: social deviancy and equalitarianism. These ideologies, however, are incompatible with each other. Social deviancy says one must change to be acceptable, whereas equalitarianism says that all people are to be accepted as equal. Although the goal of the social integration movement is to empower people to live lives of dignity and respect, advocates of this approach do not respect the needs and desires of the people they aim to serve. If the human service community is to maintain its commitment to the values of self-determination and informed consent we must acknowledge the needs and desires of those who are being served. When their needs and desires are not what we consider to be in accord with the current social integration ideology, we need to be advocates for this group in that we uphold and respect their choices. We also need to realize that although the normal stage developmental model has been rejected. This does not change the fact that people understand the world according to their mental ability. There is a need to help the general public understand these individuals in the context of their mental abilities, and when they do, this helps eliminate what I view as an injustice. Rather than seeing these persons as deviants, they will see them in a different light. If the human service community does not respect the felt needs and desires of this group, we are not treating them with dignity. In which case, we are not treating them in an ethical manner.

We should learn from the history of the human rights movement. People from disenfranchised races and cultures often began by trying to “fit in” with society at large. Over time, these groups recognized that they had a right to be respected by society without giving up their heritage and unique attributes (that society was what needed to change.) If we are to remain true to our commitment about choices, then we need to honor the choices of the people with the disabilities. This should be so even when their choices are not in line with what we happen to consider “age appropriate.” In contrast, the reason we want persons with mental retardation to behave in age appropriate ways is so that they will "fit in" with and be treated better by non-disabled people. In relation to other marginalized groups, we now demand that these people groups are treated respectfully and that society embrace their differences as such. Society's treatment of anyone should be based simply on their value as a human being. When people groups are not treated fairly, we see it as a great injustice on the part of our society (and rightfully so.) I am proposing that we view people with mental retardation in the same light as these other groups of people. When they are not treated according to their ability to understand, they are not being treated in a just or fair manner. There is a lot of talk about advocating for people with mental retardation, but this advocacy is not often based on what individuals in this condition truly want.

I believe the material above clearly shows that the reason "integration" has not taken place is because the demands that are being placed on these individuals are beyond their understanding. Whenever people in general are placed in conditions they do not understand this creates stress in their lives and this often creates problems in their social adjustment to their environment. The provision of services to persons with mental retardation should be based on what science tells us about what mental retardation is. It is also important to have a strong value base when approaching individual scenarios.

There are two broad sectors to consider. University professors and researchers often promote their own ideas about how persons with mental retardation should be treated. Families often have a very different view of the services that their family member needs. We need to find ways for both of these sectors to dialogue together in the hope of arriving at a more mutual understanding of what it is that mentally retarded persons actually need. Both groups of people have something very valuable to offer the other. Professionals have shown that we are able to teach people with severe disabilities things that were once considered impossible. We need to capitalize on that and use that technology to help these persons have as much control over their lives as is possible. On the other hand, professionals need to understand that just because we can get a person to perform certain tasks, doesn’t necessarily guarantee that we are expanding their understanding of what is taking place. We need to find ways to integrate the skills that we teach people into their lives in such a way that we are also mindful and respectful of their limitations in the area of their understanding.

Parents need to understand that college professors and researchers are just people. Therefore, they can be questioned and should be challenged just as we would do in any other field. For example, in our society there are parents who feel that they can best educate their children through the means of home schooling rather than the typical public education system. This is a clear instance of parents challenging professional opinion. In the same way, parents of a person with mental retardation need to feel confident enough to speak up for their disabled family member. This is so even when these parents feel like they are contradicting professionals.

Edgerton Robert, Quality of Life a Longitudinal Perspective ; In Quality of Life Perspectives and Issues Robert L. Schalock (Ed). American Association on Mental Retardation Washington D.C.

McLoughlin, C.S. Garner, J.R. Callahan, M., (1987). Getting Employed, Staying Employed. Baltimore: Paul H. Brooks Publishing Company.