“During times of universal deceit, telling the truth becomes a revolutionary act.” George Orwell

Tuesday, April 08, 2008

More on stigma

Dr. Marc Gold was a professor in the 1980's at the University of Illinois. He pioneered educational strategies for persons with severe cognitive disabilities through his "Try another way" approach. Specifically he proved that persons with intellectual disabilities could be trained to do complex tasks. He produced a movie whereby he showed people assembling bicycle brakes, ultimately at an error rate less than that performed by people without disabilities.

One of Dr. Gold's ideas was the "competence/deviance" hypothesis. He theorized that competence and deviance are somewhat like the scale above in that they are in a kind of a balance. He also said that the more competence a person has, the more deviance is tolerated in that individual. We see that in Hollywood actors and professional athletes. As long as you can produce on the athletic field, you can act very deviantly in your personal life. As long as you bring money in with your films, you can do crazy things that the average person would never get away with. Your perceived competence outweighs your perceived deviance.

One could apply this same theory to persons with various disabilities. If you have a visible disability, society will conisder that difference a form of deviance and devalue you. You will therefore need to have additional competence in some area to balance out that deviance in order to be accepted by society, or not devalued by society.

As people attempting to assist people with disabilities to be accepted by society, we attempt to minimize their "deviance" by not adding to it by the things we do. For example, if I treat an adult with a severe intellectual disability like a child, I am communicating to society that this man or woman is a child by virtue of their disability. The individual enters a social situation potentially being devalued by virtue of their disability, and I then further contribute to their devaluing by what I do. As the graphic above shows with the arrows on the deviance side, I contribute to the deviance that the person is perceived to have by the environment. I, therefore, will try to do all that I can to NOT add to the perceived deviance through the things that I do. So I will treat the individual as an adult, I will use adult language, I will facilitate their participation in adult settings, we will engage in adult activities, etc. The intellectually disabled man will come to social settings with their "deviance" however, I will do as little as possible to contribute to their further devaluing by society.

You might counter that I am playing a sort of "game" implying that I am trying to trick society into believing that the intellectually disabled person is something other than he actually is. I am not trying to have him portrayed as something other than he is, but I am trying to assist him to be portrayed as normally as possible so that there would be a greater liklihood that societal members will choose to interact with him. Once their connection is made with him, he will sink or swim socially based upon his skills and the flexibility of the person with whom he is interacting. My goal is to have him approached in an age appropriate manner, to be approached as an adult with the characteristics that are part of his impairment but without any further stigmatizing characteristics that I would add to him through my interactions with him.

It is a game, but it is a game that must be played in a sinful, imperfect world. I would wish that a person would be accepted, would be loved, would be interacted with independent of characteristics he might have related to an impairment, however, I recognize that in a sinful world, people who are even the least bit different are rejected. In a perfect world they would not be but I don't live in a perfect world. Therefore, I attempt to minimize stigma by not adding to it by what I do.

What does this have to do with disability ministry? I am sure you have already seen a variety of connections, but my point is that I will not do anything in the adult Sunday School class I teach that would not be done in most any other adult Sunday School class. So if the other adult classes are not coloring pictures, my class will not color pictures. If the other adult classes are not singing "Jesus loves the little children" I will not sing that song. If the other adult classes are having snacks then we will too. If the other adult classes support a missionary with their finances then we will too. And so on and so on. Sometimes the stigmatization that comes from the things that we do with adults with intellectual disabilities that contributes to their perceived "deviance" has a lot to do with how WE perceive them. We perceive them as children when they are adults so we do children's activities and crafts. We are telling those around us who we think people with disabilities are by what we do with them and how we interact with them. Would you as an adult participate in a class that does what you do in your class? I would challenge you to try to export the activities you are doing to other adult classes if you do.

As those in ministry, the church is looking to us to tell them who people with disabilities are. We do adults no favors if we communicate to the church that they are children. We do them no favors if we communicate that they are different. Better to just have them sit quietly in regular church programs without understanding than to create a program whose activities demean, devalue and paint them as deviant.



Anonymous said...

I spent a long time reading a few of the entries and was very interested by what I read! They are all very well written and thought provoking. I especially liked the ones on stigma because it is so true! To be honest if I was told to teach a sunday school class with mentally disabled adults I do not think I would know what to do! My first reaction would likely be to have them color and sing simple songs because that is how society has told us to perceive them. I am thankful to have read these two entries because I see clearly how that is not the appropriate response. Just because they may have the label of "having the intelligence of 5 year old" does not mean they need to be treated like one. In other areas of life they are usually held to adult expectations such as taking care of themselves and how they treat others. True you may have to adapt how you communicate with them in some ways, but that does not mean talk down to them as if they are children. I love that you teach with the goal of faith development and showing them how how to live a life pleasing to the Lord no matter what their mental or physical age. Thank you for that important reminder!

Anonymous said...

The concept discussed by McNair, and he agrees, is relevant to everyone in far more ways than how we respond to people with disabilities. His reference to our sinful world explains our condition yet one challenge we have as Christians is to bring God’s Kingdom to earth, and to do so daily. In the biblical text we are admonished to seek God and exercise our faith in Him with childlike faith and enthusiasm. McNair’s education and experience puts him in a competent position to suggest ways to improve the perception of adults with disabilities. The suggested ways are welcomed and needed. However, it is difficult to agree with his statement that “Better to just have them sit quietly in regular church programs without understanding than to create a program whose activities demean, devalue and paint them as deviant.” In most cases, programs that exist today were not intended to demean, devalue and highlight them as deviant. Many times, parents, family and care givers have assisted in the design of those activities because that is what has worked for them. Is McNair’s game playing the best way to bring about inclusion or are there better methods? Does chronological age trump intellectual age? Are there appropriate times to design activities at the functional age level of the individual?

Somewhere in history, someone said that ‘in a group setting, the topic discussed or presented should never be above the person present with the lowest ability to understand’. If this principle were adhered to, all of our group interaction would change. One emerging emphasis would be to take time to determine how best to interact with that person. This would confer value and meaning to that person as well as fulfill the biblical admonition of the golden rule and bring God’s Kingdom to the moment. Maybe there is much for us all to learn from coloring and singing children’s songs, especially if we do those activities with adults with disabilities.

Much thanks to McNair for his work and insights.