In 1972, Dr. Wolf Wolfensberger, wrote about what he called deviant role perceptions. These were ways in which persons with disability were sometimes perceived. The word "deviant" should be thought of in terms of differing from the norm (American Heritage dictionary). The word deviant itself can be very charged in its connotations. I thought it might be interesting to examine each of these role perceptions briefly and think about the applications for today. The following role perceptions are from Wolfensberger.
5. The deviant as an object of ridicule
Elsewhere in this blog, we have discussed the film Freaks. This film used sideshow performers as the actors. It was taking these individuals who for whatever reason chose this means of livelihood and put them on the big screen. The reaction of the "normal" people attending the side show in the film provide the true indication of how these persons were portrayed. One woman screams and faints. Hardly the response one would have when visiting other parts of the circus.
The "freak show," however, was not something new even in the 1930's. Wolfensberger speaks of medieval society, or the court of Montezuma as being populated with persons with characteristics different from the norm, with these same individuals "housed after the manner of a modern park z00" (p 23).
I can remember when imbecile, moron and idiot, terms I had come to laugh at when uttered by Moe, Larry or Curly, took on a different meaning. They were actually the labels for persons with mental retardation at the time the Three Stooges films were made. Now I still love the Three Stooges, but I tend to cringe when one calls another an imbecile as I consider the use of the term in the time that those films were made. It would be like me saying, "You profoundly mentally retarded person" to someone I was upset with. Wolfensberger speaks of the "moron" jokes that were prevalent around the time of the writing of Normalization. Take your most offensive racial slur and come up with a series of jokes using that term, and you get a feel for the inappropriateness of that term to those experiencing cognitive disability.
I can remember a time when I read a newspaper article to the group of cognitively disabled friends I meet with each Sunday. We call our group the "Light and Power Company." Anyway, the article spoke of how someone referred to a member of our group (that was why I was reading the article, to help them through the offensive nature of the article) as a "retard." I was struck by how the person to whom the label was referring, said, "They shouldn't use that kind of language in the newspaper."
So chide someone if they say someone else is retarded, or is a retard. That word takes a group of wonderful people and stigmatizes them indirectly. It supports negative aspects of the social construction of who persons with disability are.
McNair
(fcbu)
Tuesday, September 28, 2004
Tuesday, September 21, 2004
Christian societal constructions of disability
Christian societal constructions of disability . . . what the heck could that mean? Well, it has to do with the way that the concept of disability has come to be understood within Christian environments.
What does it mean for a Christian family to have a child with a disability?
What do people think when they see this family with a disabled family member?
What have Christians come to understand is the reason a particular family has a family member with a disability?
What does it mean to a person to have a disabilty, whether they acquired it or were born with it?
Are there common perceptions which have been taught or at least sufficiently supported that they have become a part of the way Christians think about disabilty?
What is mental retardation, from a Christian perspective?
What societal constructions, that is, what commonly accepted notions accompany disability in Christian settings?
Why does a person have a disability?
Where did the disability come from?
What does disability imply about God?
Does God cause disability?
What does disability imply about people?
What is the responsibility of people in the etiology of disability?
What is the responsibility of people in the life of a person, either for a Christian or a non-Christian with a disability?
What does disability imply about the church?
What is the responsibility of the church in the life of a person, either for a Christian or a non-Christian with a disability?
Does the Bible have anything to say about disability?
The way these kinds questions would typically be answered by an average Christian would give an indication of what the Christian societal construction of disability is. the answers would indicate how Christians understand disabilty, and the degree to which a Christian perception might be similar or different from the perception of a non-Christian.
For example, in some societies, the societal construction of women is that they are below men. In some societies, the societal construction is that some ethnic groups are below others. People might give reasons for the societal constructions they have come to accept, overtly or otherwise. If I perceive persons of a different ethnicity as somehow less than myself, I provide a glimpse into my belief system, and depending upon the basis for my perceptions, I will be considered rational or irrational.
The Christian societal construction of disability provides a glimpse into the Christian belief system for those inside or outside of the faith, and the basis for Christian perceptions will also come under scrutiny to determine whether they are rational or not. I have experienced aspects of the Christian societal construction which leave me wanting and wondering. As a lifelong Christian, I see people with disability, people without disability and the Christian scriptures and want to find some consistency in it all. I want the practice of people to reflect the consistency of the scriptures, but somehow along the way, the Christian societal construction has strayed, almost into some form of fairytale fabrication. It has enough truth to feign believability, but little enough falacy that you could overlook it (if you didn't know any better) and begin the walk down a path leading to nonsense. Nonsense projected upon people with disability is what I often see in people, in churches, in Christians even. It is the Christian imagination gotten lost.
McNair
What does it mean for a Christian family to have a child with a disability?
What do people think when they see this family with a disabled family member?
What have Christians come to understand is the reason a particular family has a family member with a disability?
What does it mean to a person to have a disabilty, whether they acquired it or were born with it?
Are there common perceptions which have been taught or at least sufficiently supported that they have become a part of the way Christians think about disabilty?
What is mental retardation, from a Christian perspective?
What societal constructions, that is, what commonly accepted notions accompany disability in Christian settings?
Why does a person have a disability?
Where did the disability come from?
What does disability imply about God?
Does God cause disability?
What does disability imply about people?
What is the responsibility of people in the etiology of disability?
What is the responsibility of people in the life of a person, either for a Christian or a non-Christian with a disability?
What does disability imply about the church?
What is the responsibility of the church in the life of a person, either for a Christian or a non-Christian with a disability?
Does the Bible have anything to say about disability?
The way these kinds questions would typically be answered by an average Christian would give an indication of what the Christian societal construction of disability is. the answers would indicate how Christians understand disabilty, and the degree to which a Christian perception might be similar or different from the perception of a non-Christian.
For example, in some societies, the societal construction of women is that they are below men. In some societies, the societal construction is that some ethnic groups are below others. People might give reasons for the societal constructions they have come to accept, overtly or otherwise. If I perceive persons of a different ethnicity as somehow less than myself, I provide a glimpse into my belief system, and depending upon the basis for my perceptions, I will be considered rational or irrational.
The Christian societal construction of disability provides a glimpse into the Christian belief system for those inside or outside of the faith, and the basis for Christian perceptions will also come under scrutiny to determine whether they are rational or not. I have experienced aspects of the Christian societal construction which leave me wanting and wondering. As a lifelong Christian, I see people with disability, people without disability and the Christian scriptures and want to find some consistency in it all. I want the practice of people to reflect the consistency of the scriptures, but somehow along the way, the Christian societal construction has strayed, almost into some form of fairytale fabrication. It has enough truth to feign believability, but little enough falacy that you could overlook it (if you didn't know any better) and begin the walk down a path leading to nonsense. Nonsense projected upon people with disability is what I often see in people, in churches, in Christians even. It is the Christian imagination gotten lost.
McNair
Monday, September 20, 2004
Wolfensberger on social integration
One of my favorite books on social integration, is "Normalization, social integration, and community sevices" edited by Robert Flynn and Kathleen Nitsch (1980). In an article by Wolfensberger (The definition of normalization: Update, problems, disagreements, and misunderstandings), he makes the following comments.
" . . . in the long run, no good can come of any program, including normalization, that is not based on intimate, positive one-to-one relationships between ordinary (unpaid) citizens and those who are handicapped and who would otherwise be devalued."
One on one contact is reminiscent of the idea of matching families in churches with persons with disability within churches in a life partner kind of arrangement.
"Indeed, there is little within the implication of the Wolfensberger definition of normalization that is not empirically supportable, and one would almost have to go to metaphysical systems for more broadly applicable concepts. One such system might be radical Christianity, which would subsume much of normalization, but which would also reject some(not many) of its implications."
Interesting that Wolfensberger suggests "radical Christianity." I am unsure what he means by the term radical, but I suspect the implication is something other than what is typically observed in churches.
In a second article in the same book (Research, empiricism, and the principle of normalization), Wolfensberger states
"Thus, when devalued people are served in valued settings, where familiar and valued methods are used, and together with other valued people (i.e., associated with positive images), their social desirability in the eyes of others (i.e., the potential assimilators) will be increased.
The findings also imply that the development of highly valued personal traits, such as courtesy, friendliness, generosity, hospitality, sociability, and attractive appearance, in devalued persons is extremely important in moving them toward acceptance by members of society and therefore toward the integration onto the community."
This is similar to Berger and Neuhaus' 1977 article, "To empower people: The role of mediating structures in public policy" who define the concept "mediating structures." Mediating structures being people who help a devalued group by introducing them to those who can help them, or by helping them themselves. This is the track the church should be on. By our involvement, our service, our work, we validate the lives of persons with disability and in some ways make it "cool" to serve them. The more we embrace this notion as the church the better for persons with disability and the church.
McNair
(fcbu)
" . . . in the long run, no good can come of any program, including normalization, that is not based on intimate, positive one-to-one relationships between ordinary (unpaid) citizens and those who are handicapped and who would otherwise be devalued."
One on one contact is reminiscent of the idea of matching families in churches with persons with disability within churches in a life partner kind of arrangement.
"Indeed, there is little within the implication of the Wolfensberger definition of normalization that is not empirically supportable, and one would almost have to go to metaphysical systems for more broadly applicable concepts. One such system might be radical Christianity, which would subsume much of normalization, but which would also reject some(not many) of its implications."
Interesting that Wolfensberger suggests "radical Christianity." I am unsure what he means by the term radical, but I suspect the implication is something other than what is typically observed in churches.
In a second article in the same book (Research, empiricism, and the principle of normalization), Wolfensberger states
"Thus, when devalued people are served in valued settings, where familiar and valued methods are used, and together with other valued people (i.e., associated with positive images), their social desirability in the eyes of others (i.e., the potential assimilators) will be increased.
The findings also imply that the development of highly valued personal traits, such as courtesy, friendliness, generosity, hospitality, sociability, and attractive appearance, in devalued persons is extremely important in moving them toward acceptance by members of society and therefore toward the integration onto the community."
This is similar to Berger and Neuhaus' 1977 article, "To empower people: The role of mediating structures in public policy" who define the concept "mediating structures." Mediating structures being people who help a devalued group by introducing them to those who can help them, or by helping them themselves. This is the track the church should be on. By our involvement, our service, our work, we validate the lives of persons with disability and in some ways make it "cool" to serve them. The more we embrace this notion as the church the better for persons with disability and the church.
McNair
(fcbu)
Sunday, September 19, 2004
Broaden your mind, Malcolm, broaden your mind!
I was reading C.S. Lewis', Letters to Malcolm, chiefly on prayer and was struck with something Lewis wrote. Although the comment was made in reference to liturgy/worship, I thought about it in terms of disability. Lewis says,
"Broaden your mind, Malcolm, broaden your mind! It takes all sorts to make a world; or a church. This may be even truer of a church. If grace perfects nature it must expand all our natures into the full richness of the diversity which God intended when He made them, and heaven will display far more variety than hell. "
Grace perfects nature. That is an interesting concept. More perfection needed, more grace dispensed. God shows grace to all people, sometimes I think me above all. God shows grace to perfect our nature. The church is God's agent on Earth. How does the church fare in dispensing grace for the perfection of nature? In order to include me, God needs to dispense grace. I accept His grace but he gives it.
There are those who need grace from the church. It is their role to receive it, however, it is the church's, our role, to dispense it such that we can perfect their nature insofar as we connect them with God, with the Body of Christ.
Later in the same letter, he writes,
"My grandfather, I'm told, used to say that he 'looked foward to having some very interesting conversations with St. Paul when he got to heaven.' Two clerical gentlemen talking at ease in a club! It never seemed to cross his mind that an ecnounter with St. Paul might be rather an overwhelming experience even for an Evangelical clergyman of good family. But when Dante saw the great apostles in heaven they affected him like mountains. There's lots to be said against devotions to saints; but at least they keep on reminding us that we are very small people compared with them. How much smaller before their Master."
I, like C.S. Lewis' grandfather, in my pride and vanity tend to have an inflated view of who I am, and therefore of my arrival in heaven. Do I actually think everything will stop and St. Paul will be looking for me to have a cup of coffee and discuss some fine point that I think I have a handle on. This is the same Saul who met Jesus and became Paul who has been with the Lord for a couple thousand years. I agree with Lewis in agreeing with Dante, that encountering the greats of the faith will be like encountering mountains, and how does one interact with a mountain.
Actually I think I might have more of a chance of coffee with my mentally handicapped friends, assuming the elect do such things like coffee in heaven. If God allows us to keep memories of life in heaven (some He couldn't I would suspect in order to make heaven truly blissful), but if He does, I would love to have a conversation reminiscent of what one finds in Keyes' Flowers for Algernon.
McNair
"Broaden your mind, Malcolm, broaden your mind! It takes all sorts to make a world; or a church. This may be even truer of a church. If grace perfects nature it must expand all our natures into the full richness of the diversity which God intended when He made them, and heaven will display far more variety than hell. "
Grace perfects nature. That is an interesting concept. More perfection needed, more grace dispensed. God shows grace to all people, sometimes I think me above all. God shows grace to perfect our nature. The church is God's agent on Earth. How does the church fare in dispensing grace for the perfection of nature? In order to include me, God needs to dispense grace. I accept His grace but he gives it.
There are those who need grace from the church. It is their role to receive it, however, it is the church's, our role, to dispense it such that we can perfect their nature insofar as we connect them with God, with the Body of Christ.
Later in the same letter, he writes,
"My grandfather, I'm told, used to say that he 'looked foward to having some very interesting conversations with St. Paul when he got to heaven.' Two clerical gentlemen talking at ease in a club! It never seemed to cross his mind that an ecnounter with St. Paul might be rather an overwhelming experience even for an Evangelical clergyman of good family. But when Dante saw the great apostles in heaven they affected him like mountains. There's lots to be said against devotions to saints; but at least they keep on reminding us that we are very small people compared with them. How much smaller before their Master."
I, like C.S. Lewis' grandfather, in my pride and vanity tend to have an inflated view of who I am, and therefore of my arrival in heaven. Do I actually think everything will stop and St. Paul will be looking for me to have a cup of coffee and discuss some fine point that I think I have a handle on. This is the same Saul who met Jesus and became Paul who has been with the Lord for a couple thousand years. I agree with Lewis in agreeing with Dante, that encountering the greats of the faith will be like encountering mountains, and how does one interact with a mountain.
Actually I think I might have more of a chance of coffee with my mentally handicapped friends, assuming the elect do such things like coffee in heaven. If God allows us to keep memories of life in heaven (some He couldn't I would suspect in order to make heaven truly blissful), but if He does, I would love to have a conversation reminiscent of what one finds in Keyes' Flowers for Algernon.
McNair
Wednesday, September 15, 2004
Deconstructing disability: Role perceptions/sick
In 1972, Dr. Wolf Wolfensberger, wrote about what he called deviant role perceptions. These were ways in which persons with disability were sometimes perceived. The word "deviant" should be thought of in terms of differing from the norm (American Heritage dictionary). The word deviant itself can be very charged in its connotations. I thought it might be interesting to examine each of these role perceptions briefly and think about the applications for today. The following role perceptions are from Wolfensberger.
4. The deviant as sick
Another role perception described by Wolfensberger, is the disabled person as "sick." They are a diseased organism. As stated previously, that is why a medical model was adopted to treat them. People with disability are patients, not students or residents. Decisions are often made by medical personnel. It is true that there are many areas in which medical personnel are the best to make a particular decision, however, often they are not.
I once had the opportunity to work with Dr. Richard Koch. Dr. Koch at that time, was the director of the national collaborative PKU study(phenylketonuria, an inborn error of metabolism which without treatment can result in severe mental retardation). Even in the midst of the powerful research he was doing which ultimately affected the lives of thousands of persons experiencing this genetic disorder, his perspective was that the medical profession had very little to offer most people with disability. They could provide a diagnosis most of the time, but beyond that, it was the job of educators to improve the lives of the persons with disability.
Educators have at times adopted this same perspective, referring to their services not as education, but as "educational therapy."
The take home lesson of this particular role perception is that people with cerebral palsy are not contagious and neither are persons with down syndrome. The appearance of having a cold has to do with aspects of their disabilities (although I guess they could at times also have a cold). People do not "suffer" from down syndrome in the same way that someone suffers from the flu.
Additonally, there isn't a medication, for persons with down syndrome or cerebral palsy or most other forms of disability that makes it go away.
The life experience as persons with down syndrome is their life experience. How could a person with down syndrome, a congenital genetic syndrome, know an existence other than that which they were born with? Those who are less disabled cognitively, might realize they are different, but I suspect such thoughts are atypical.
Personally, I can imagine what it might be like to be blind or regularly use a wheel chair, but I really don't know. I do have some experience of feeling different because of a lack of math ability. Such a problem is hardly comparable to blindness or other disabilities, however, it can be used for a point of discussion. I am amazed at people around who understand things which I don't, but I really don't know what it is like to understand those things. My son, for example, was doing advanced calculus as a high school senior. I don't know what it is like to have that level of math ability. I guess I can imagine being able to understand something that I don't understand, but that is about the limit for me. As a medical student, I could imagine being able to take in all of the information provided, commit it to memory, and then retrieve it as necessary to answer questions on a test or from an instructor. However, the fact that I flunked out of medical school indicates that I was in a place that was beyond my ability to do those things. I know that I largely only think of myself as different when the environment that I am in makes me feel that way (e.g. medical school). In other environments, I appear to have a level of understanding beyond many of those who are in the environment with me. In those environments, I have the ability to either accentuate my strengths in comparison to another's weaknesses, or attempt to integrate them with myself and myself with them. I have a notion of what it is like to be them and they have a notion of what it is like to be me, but we really don't know.
I can remember my father used to talk with frustration about a comment my grandmother would make when she was feeling depressed. She would say, "Nobody knows how I feel." My father, a person with severe diabetes, chafed at that statement, saying, "Well, nobody knows how I feel." Which really didn't help my grandmother.
I believe this is the same for most persons with cognitive disability. They don't know how I feel and I don't know how they feel.
One thing I have to get through my head, however, is that their disability is their life experience. They are not sick, they have a different life experience. If I treat them as if they are sick, I project on them something which they are not feeling and I illustrate my own ignorance about what their life experience actually is.
McNair
(fcbu)
4. The deviant as sick
Another role perception described by Wolfensberger, is the disabled person as "sick." They are a diseased organism. As stated previously, that is why a medical model was adopted to treat them. People with disability are patients, not students or residents. Decisions are often made by medical personnel. It is true that there are many areas in which medical personnel are the best to make a particular decision, however, often they are not.
I once had the opportunity to work with Dr. Richard Koch. Dr. Koch at that time, was the director of the national collaborative PKU study(phenylketonuria, an inborn error of metabolism which without treatment can result in severe mental retardation). Even in the midst of the powerful research he was doing which ultimately affected the lives of thousands of persons experiencing this genetic disorder, his perspective was that the medical profession had very little to offer most people with disability. They could provide a diagnosis most of the time, but beyond that, it was the job of educators to improve the lives of the persons with disability.
Educators have at times adopted this same perspective, referring to their services not as education, but as "educational therapy."
The take home lesson of this particular role perception is that people with cerebral palsy are not contagious and neither are persons with down syndrome. The appearance of having a cold has to do with aspects of their disabilities (although I guess they could at times also have a cold). People do not "suffer" from down syndrome in the same way that someone suffers from the flu.
Additonally, there isn't a medication, for persons with down syndrome or cerebral palsy or most other forms of disability that makes it go away.
The life experience as persons with down syndrome is their life experience. How could a person with down syndrome, a congenital genetic syndrome, know an existence other than that which they were born with? Those who are less disabled cognitively, might realize they are different, but I suspect such thoughts are atypical.
Personally, I can imagine what it might be like to be blind or regularly use a wheel chair, but I really don't know. I do have some experience of feeling different because of a lack of math ability. Such a problem is hardly comparable to blindness or other disabilities, however, it can be used for a point of discussion. I am amazed at people around who understand things which I don't, but I really don't know what it is like to understand those things. My son, for example, was doing advanced calculus as a high school senior. I don't know what it is like to have that level of math ability. I guess I can imagine being able to understand something that I don't understand, but that is about the limit for me. As a medical student, I could imagine being able to take in all of the information provided, commit it to memory, and then retrieve it as necessary to answer questions on a test or from an instructor. However, the fact that I flunked out of medical school indicates that I was in a place that was beyond my ability to do those things. I know that I largely only think of myself as different when the environment that I am in makes me feel that way (e.g. medical school). In other environments, I appear to have a level of understanding beyond many of those who are in the environment with me. In those environments, I have the ability to either accentuate my strengths in comparison to another's weaknesses, or attempt to integrate them with myself and myself with them. I have a notion of what it is like to be them and they have a notion of what it is like to be me, but we really don't know.
I can remember my father used to talk with frustration about a comment my grandmother would make when she was feeling depressed. She would say, "Nobody knows how I feel." My father, a person with severe diabetes, chafed at that statement, saying, "Well, nobody knows how I feel." Which really didn't help my grandmother.
I believe this is the same for most persons with cognitive disability. They don't know how I feel and I don't know how they feel.
One thing I have to get through my head, however, is that their disability is their life experience. They are not sick, they have a different life experience. If I treat them as if they are sick, I project on them something which they are not feeling and I illustrate my own ignorance about what their life experience actually is.
McNair
(fcbu)
Tuesday, September 14, 2004
Deconstructing disability: Role perceptions/object of pity
In 1972, Dr. Wolf Wolfensberger, wrote about what he called deviant role perceptions. These were ways in which persons with disability were sometimes perceived. The word "deviant" should be thought of in terms of differing from the norm (American Heritage dictionary). The word deviant itself can be very charged in its connotations. I thought it might be interesting to examine each of these role perceptions briefly and think about the applications for today. The following role perceptions are from Wolfensberger.
3. The deviant as an object of pity
Once it was understood that persons with cognitive disability were not actually a menace, their perception largely changed from a menace to an object of pity. They needed to be placed in environments where they might be protected. A medical model replaced the educational model. So health became the primary concern, not education.
I can remember working at an intermediate care facility for kids with severe to profound mental retardation, where one of the children was given a new pair of tennis shoes. As with anyone, after a few hours, the student developed a blister on his heal, which then began to bleed a bit. Once this came to the attention of the nursing staff, all educational programming was canceled for that student indefinitely into the future till the blister healed. After all, you couldn't expect the poor child who has already experienced so much to have to endure going to school.
This experience illustrates this perception. There are few demands for growth, no "risks" are taken, and the person is infantilized. This is a demeaning position for one to be in. Later in the development of the disability movement, one of the rallying cries was that people need to be afforded the "dignity of risk." That is, that if someone is constantly protected, he will never grow. Risk is not ambraced in a cavalier fashion, like life is some extreme sport, however, dignity does come with risk. It's like the first time your parents gave you the car keys. Risk was involved but it was a calculated risk, an informed risk which moved you to a new level of responsibility. Imagine if you were 25 and were still waiting for your parents to trust you with the car keys. You would feel angry and humiliated at the paternalistic protective environment you would have to endure.
Christians often will, with the best intentions, make comments which illustrate this perspective. We see a person with disability acting in an inappropriate fashion, and someone says, "He can't help the way he is." Well, nine times out of ten he probably can help the way he is, and needs to be told to "cut it the heck out!" I remember a great scene in the movie "Almost an Angel" where a guy in a wheel chair, upset about the fact that he is disabled, acts obnoxioulsy in a bar. A character played by Paul Hogan (Crocodile Dundee) tells him to quit acting like a jerk. The guy doesn't act right, so Paul Hogan sits in a chair, so he is at the guy's level, and punches him in the nose. That is so refreshing in that Hogan sees the man in the chair as a man, not as a disabled man, and treats him like a man.
Another comment sometimes made is that the person with disability is "suffering from his condition." Now there are people who actually suffer from disabling conditions, and I would in no way belittle that. However, to many persons with disability, their condition is the only experience they have in life, so they don't suffer from the loss of some capacity as a person who might have acquired a disability later in life would. If I project suffering on another person, I will either inappropriately see him as some sort of hero, or an object of pity. Neither of these characterizations apply to the average person born with a disability and do little to normalize them to the general society.
And then my personal unfavorite, "There but for the grace of God go I." So, the obvious conclusion is that you have experienced the grace of God, she didn't. The sentiment I understand. Yes, perhaps I should be grateful that my life experience is what it is. But I do little for the person with disability or myself for that matter in just celebrating that I am not disabled. A better reaction would be to celebrate the grace of God to you by doing something to help, befriend, support, or do something positive with the life you have received.
It is also interesting to contrast this statement, however, with the response which Paul relates when he asks God to take away his "thorn." Paul says that God relates to him that, "My grace is sufficient for you." If that is indeed the case, Paul might be able to say, "Here by the grace of God go I" as he carries his disability.
Somehow there is something which is not entirely negative about disability that we as people just don't appear to get.
McNair
(fcbu)
3. The deviant as an object of pity
Once it was understood that persons with cognitive disability were not actually a menace, their perception largely changed from a menace to an object of pity. They needed to be placed in environments where they might be protected. A medical model replaced the educational model. So health became the primary concern, not education.
I can remember working at an intermediate care facility for kids with severe to profound mental retardation, where one of the children was given a new pair of tennis shoes. As with anyone, after a few hours, the student developed a blister on his heal, which then began to bleed a bit. Once this came to the attention of the nursing staff, all educational programming was canceled for that student indefinitely into the future till the blister healed. After all, you couldn't expect the poor child who has already experienced so much to have to endure going to school.
This experience illustrates this perception. There are few demands for growth, no "risks" are taken, and the person is infantilized. This is a demeaning position for one to be in. Later in the development of the disability movement, one of the rallying cries was that people need to be afforded the "dignity of risk." That is, that if someone is constantly protected, he will never grow. Risk is not ambraced in a cavalier fashion, like life is some extreme sport, however, dignity does come with risk. It's like the first time your parents gave you the car keys. Risk was involved but it was a calculated risk, an informed risk which moved you to a new level of responsibility. Imagine if you were 25 and were still waiting for your parents to trust you with the car keys. You would feel angry and humiliated at the paternalistic protective environment you would have to endure.
Christians often will, with the best intentions, make comments which illustrate this perspective. We see a person with disability acting in an inappropriate fashion, and someone says, "He can't help the way he is." Well, nine times out of ten he probably can help the way he is, and needs to be told to "cut it the heck out!" I remember a great scene in the movie "Almost an Angel" where a guy in a wheel chair, upset about the fact that he is disabled, acts obnoxioulsy in a bar. A character played by Paul Hogan (Crocodile Dundee) tells him to quit acting like a jerk. The guy doesn't act right, so Paul Hogan sits in a chair, so he is at the guy's level, and punches him in the nose. That is so refreshing in that Hogan sees the man in the chair as a man, not as a disabled man, and treats him like a man.
Another comment sometimes made is that the person with disability is "suffering from his condition." Now there are people who actually suffer from disabling conditions, and I would in no way belittle that. However, to many persons with disability, their condition is the only experience they have in life, so they don't suffer from the loss of some capacity as a person who might have acquired a disability later in life would. If I project suffering on another person, I will either inappropriately see him as some sort of hero, or an object of pity. Neither of these characterizations apply to the average person born with a disability and do little to normalize them to the general society.
And then my personal unfavorite, "There but for the grace of God go I." So, the obvious conclusion is that you have experienced the grace of God, she didn't. The sentiment I understand. Yes, perhaps I should be grateful that my life experience is what it is. But I do little for the person with disability or myself for that matter in just celebrating that I am not disabled. A better reaction would be to celebrate the grace of God to you by doing something to help, befriend, support, or do something positive with the life you have received.
It is also interesting to contrast this statement, however, with the response which Paul relates when he asks God to take away his "thorn." Paul says that God relates to him that, "My grace is sufficient for you." If that is indeed the case, Paul might be able to say, "Here by the grace of God go I" as he carries his disability.
Somehow there is something which is not entirely negative about disability that we as people just don't appear to get.
McNair
(fcbu)
Monday, September 13, 2004
Deconstructing disability: role perceptions/menace
In 1972, Dr. Wolf Wolfensberger, wrote about what he called deviant role perceptions. These were ways in which persons with disability were sometimes perceived. The word "deviant" should be thought of in terms of differing from the norm (American Heritage dictionary). The word deviant itself can be very charged in its connotations. I thought it might be interesting to examine each of these role perceptions briefly and think about the applications for today. The following are from Wolfensberger.
2. The deviant as a menace
At the turn of the 18th to 19th century, a variety of things happened relative to persons with disability. The birth of institutions 50 years prior (a very positive thing at that time) caused parents to come forward with their children with disability so they might be served by these, "palaces . . . for the indigent and infirm, the chosen friends of our Lord Jesus Christ" (Edouard Seguin, 1854). People at the time began to wonder at all those who came forward. Then there was the urbanization of America where persons who were successful in an agrarian society were not in the cities. The IQ test identified even more with low IQ's. Although these people had always been in the community, they were somewhat hidden. However, this growth in the numbers of persons with disability appeard to be a real growth, an epidemic. At that time, the public was aroused to fear.
Persons with disability became associated with the social problems of the day (crime, degeneracy, poverty, etc.). and were vilified. The insitituions changed becoming places of segregation from the community, for protection of the community, and segregation of the sexes of those with disability, to stop their out of control reproduction.
It is important to note that there is often evil perceived in what is not understood. Evil has been perceived in persons with disability through the centuries. Earlier in this blog, we noted how the disciples of Christ asked who sinned that a particular child was born with disability. Jesus refutes this notion, however, sins of parents or of the disabled individuals themselves as the cause of disability is a wrong notion which lingers in the church today. If I feel that a person who is dysmorphic in appearance is that way as a result of sin/evil, to some degree I will treat that person as a menace.
The proof that these attitudes pervade can be seen when someone attempts to place a group home for adults with mental retardation in the community. Although these homes tend to be better maintained than the community average, fears of violence or sexual perversion on the part of the persons with mental retardation enrage the community and people attempt to keep the homes out. The thing that always amazes me, is how these perceptions of persons with disability as menace, are so close to the surface in society's thinking, and how quickly they are verbalized with little evidence to support them. People suspect that this is the way these different looking people are, and when someone mentions their irrational fear, they just pile on.
People truly do see evil in what they do not understand.
McNair
(fcbu)
2. The deviant as a menace
At the turn of the 18th to 19th century, a variety of things happened relative to persons with disability. The birth of institutions 50 years prior (a very positive thing at that time) caused parents to come forward with their children with disability so they might be served by these, "palaces . . . for the indigent and infirm, the chosen friends of our Lord Jesus Christ" (Edouard Seguin, 1854). People at the time began to wonder at all those who came forward. Then there was the urbanization of America where persons who were successful in an agrarian society were not in the cities. The IQ test identified even more with low IQ's. Although these people had always been in the community, they were somewhat hidden. However, this growth in the numbers of persons with disability appeard to be a real growth, an epidemic. At that time, the public was aroused to fear.
Persons with disability became associated with the social problems of the day (crime, degeneracy, poverty, etc.). and were vilified. The insitituions changed becoming places of segregation from the community, for protection of the community, and segregation of the sexes of those with disability, to stop their out of control reproduction.
It is important to note that there is often evil perceived in what is not understood. Evil has been perceived in persons with disability through the centuries. Earlier in this blog, we noted how the disciples of Christ asked who sinned that a particular child was born with disability. Jesus refutes this notion, however, sins of parents or of the disabled individuals themselves as the cause of disability is a wrong notion which lingers in the church today. If I feel that a person who is dysmorphic in appearance is that way as a result of sin/evil, to some degree I will treat that person as a menace.
The proof that these attitudes pervade can be seen when someone attempts to place a group home for adults with mental retardation in the community. Although these homes tend to be better maintained than the community average, fears of violence or sexual perversion on the part of the persons with mental retardation enrage the community and people attempt to keep the homes out. The thing that always amazes me, is how these perceptions of persons with disability as menace, are so close to the surface in society's thinking, and how quickly they are verbalized with little evidence to support them. People suspect that this is the way these different looking people are, and when someone mentions their irrational fear, they just pile on.
People truly do see evil in what they do not understand.
McNair
(fcbu)
Thursday, September 09, 2004
Freaks (continued)
Five years before the release of the movie "Freaks," Supreme Court Justice Holmes stated the following in relation to imposed sterilization of persons with severe disability.
"We have seen more than once that the public welfare may call upon the best citizens for their lives. It would be strange if it could not call upon those who already sap the strength of the State for these lesser sacrifices, often not felt to be such by those concerned, in order to prevent our being swamped with incompetents. It is better for the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover the cutting of Fallopian tubes . . .Three generations of idiots are enough"(May 2, 1927).
This is just an example of the ignorance and fear that swirled around persons with disability at that time. The thinking was that they were breeding almost uncontrollably, and the only way to stop their growth in numbers was through their sterilization. But needless to day, sterilization would have had little or no effect as most persons with disability are born to nondisabled parents.
The above quote, which I shared last night in a Cal Baptist class I am teaching, illustrates how "Freaks" took people who were misunderstood and feared (when in reality they were just people, and in some cases cogntiviely disabled people) and via a horror movie biased an already discriminatory public towards them. A modern equivalent does not come to mind. But you have a somewhat helpless group, many of whom cannot even understand the most basic of things occurring around themselves, who are hated and feared for totally irrational reasons, and a film maker plays on those stereotypical attitudes by portraying them in a manner which supports the destructive perceptions. Now I am sure that as a result of the film people didn't go out and kill masses of disabled people (at least not in the US, as part of the eugenic movement it did occur in Germany, although I suspect the film had little to do with that), but it surely supported the attitudes under the surface which were governing the inappropriate treatment of those persons which continued on for another 30 years. Vestiges of those attitudes persist today.
McNair
(fcbu)
"We have seen more than once that the public welfare may call upon the best citizens for their lives. It would be strange if it could not call upon those who already sap the strength of the State for these lesser sacrifices, often not felt to be such by those concerned, in order to prevent our being swamped with incompetents. It is better for the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover the cutting of Fallopian tubes . . .Three generations of idiots are enough"(May 2, 1927).
This is just an example of the ignorance and fear that swirled around persons with disability at that time. The thinking was that they were breeding almost uncontrollably, and the only way to stop their growth in numbers was through their sterilization. But needless to day, sterilization would have had little or no effect as most persons with disability are born to nondisabled parents.
The above quote, which I shared last night in a Cal Baptist class I am teaching, illustrates how "Freaks" took people who were misunderstood and feared (when in reality they were just people, and in some cases cogntiviely disabled people) and via a horror movie biased an already discriminatory public towards them. A modern equivalent does not come to mind. But you have a somewhat helpless group, many of whom cannot even understand the most basic of things occurring around themselves, who are hated and feared for totally irrational reasons, and a film maker plays on those stereotypical attitudes by portraying them in a manner which supports the destructive perceptions. Now I am sure that as a result of the film people didn't go out and kill masses of disabled people (at least not in the US, as part of the eugenic movement it did occur in Germany, although I suspect the film had little to do with that), but it surely supported the attitudes under the surface which were governing the inappropriate treatment of those persons which continued on for another 30 years. Vestiges of those attitudes persist today.
McNair
(fcbu)
Wednesday, September 08, 2004
Deconstructing disability: role perceptions/subhuman animal
In 1972, Dr. Wolf Wolfensberger, wrote about what he called deviant role perceptions. These were ways in which persons with disability were sometimes perceived. The word "deviant" should be thought of in terms of differing from the norm (American Heritage dictionary). The word deviant itself can be very charged in its connotations. I thought it might be interesting to examine each of these role perceptions briefly and think about the applications for today. The following are from Wolfensberger.
1. The deviant as sub-human animal
Considering the perceptions of persons wtih disability in the past, particularly during the time when institutionalization was prevalent, persons with severe disability appeared to be being perceived as animals. Some of the evidence included abuse resistant environments, easily cleaned environments (even to the point of being hosed down), extensive soundproofing, objects placed out of reach, and many locked areas. The types of foods served seemed to imply a lack of discrimination in those who were eating them. Similarly, rooms were without windows or windows were highly placed and those living in the institutions would be unable to see out of them.
People spoke of keeping clients, rather than interacting with people. We see protected nurses' stations reminescent of a scene out of "One Flew Over the Cuckoo's Nest." Residents are not expected to learn or develop appreciably. People also spoke of "garden variety mental retardation" or even referred to a person who was profoundly disabled as a "vegetable."
There was the abrogation of human emotions or sensibilities such as shame, or modesty. Even as late as the 1970's severe aversive stimulation was used as a "training" technique, in particular with people with autism. The implication was that such severe aversives were necessary as the trainees had no feeling of pain or sensations were diminished in comparison with non disabled persons.
How do these perceptions persist today? I honestly think that the situation has improved for persons with more mild disability. However, this perception lingers in the perceptions of persons with more severe types of disability. I have been in situations where a young woman with profound retardation had her diaper changed by an open door during the passing period at a junior high school (that is, untill I shouted at the teacher to "Shut the door!"). I have been in other situations were private student information was posted on the wall of the classroom, or the students' privacy was not protected in other ways. I have heard teachers speak about students in negative ways in front of the students because "he can't understand what I am saying anyway."
One of the first things one should do in visiting an environment populated with persons with disability is to look carefully at that environment. The appearance of the environment will provide an indication of what those who are managing the environment think of those who populate it. You will learn whether those in charge think those in the environment are safe or dangerous, are in control or out of control, should be treated according to their age, are learning or are being maintained, are sick or healthy, are people or otherwise.
McNair
(fcbu)
1. The deviant as sub-human animal
Considering the perceptions of persons wtih disability in the past, particularly during the time when institutionalization was prevalent, persons with severe disability appeared to be being perceived as animals. Some of the evidence included abuse resistant environments, easily cleaned environments (even to the point of being hosed down), extensive soundproofing, objects placed out of reach, and many locked areas. The types of foods served seemed to imply a lack of discrimination in those who were eating them. Similarly, rooms were without windows or windows were highly placed and those living in the institutions would be unable to see out of them.
People spoke of keeping clients, rather than interacting with people. We see protected nurses' stations reminescent of a scene out of "One Flew Over the Cuckoo's Nest." Residents are not expected to learn or develop appreciably. People also spoke of "garden variety mental retardation" or even referred to a person who was profoundly disabled as a "vegetable."
There was the abrogation of human emotions or sensibilities such as shame, or modesty. Even as late as the 1970's severe aversive stimulation was used as a "training" technique, in particular with people with autism. The implication was that such severe aversives were necessary as the trainees had no feeling of pain or sensations were diminished in comparison with non disabled persons.
How do these perceptions persist today? I honestly think that the situation has improved for persons with more mild disability. However, this perception lingers in the perceptions of persons with more severe types of disability. I have been in situations where a young woman with profound retardation had her diaper changed by an open door during the passing period at a junior high school (that is, untill I shouted at the teacher to "Shut the door!"). I have been in other situations were private student information was posted on the wall of the classroom, or the students' privacy was not protected in other ways. I have heard teachers speak about students in negative ways in front of the students because "he can't understand what I am saying anyway."
One of the first things one should do in visiting an environment populated with persons with disability is to look carefully at that environment. The appearance of the environment will provide an indication of what those who are managing the environment think of those who populate it. You will learn whether those in charge think those in the environment are safe or dangerous, are in control or out of control, should be treated according to their age, are learning or are being maintained, are sick or healthy, are people or otherwise.
McNair
(fcbu)
Sunday, September 05, 2004
Freaks
I had been reading the reviews of the release to DVD of a film made in 1932 entitled Freaks. The critics have acclaimed the picture as one which places people with physical disabilities (mostly) in a positive light in comparison to the evil of those who are not disabled. The first day that the DVD was available I bought one, but hadn't had the opportunity to watch it till last evening.
My first impression is as a historical piece which provides insight into perceptions of persons with disability at that time in American history. Many of the stereotypes are supported in the film.
I must state that the film by design is a horror film, and the disabled actors (at least those with normal intelligence, there were some who were severely cognitively disabled), must have been aware of how they were being portrayed. In spite of this, additional material provided on the DVD indicates only one actor appears to have felt the experience was a positive one. The film's disabled actors were largely carnival side show "performers" so the opportunity to appear in a film was likely seen as a positive carreer move. Several of the "little people" or actors with short stature disabilities appeared in other films including "The Wizard of Oz" and apparently had relativly successful careers.
In the additional material, each of the actors in the film, disabled or otherwise, are discussed briefly. It is noteworthy to consider the careers of the disabled actors. To the DVD's credit, side show performance is treated with some degree of respect, but the comparison made between a singer with an unusually good voice and a person with a particularly aberrant disability is a stretch. Still each actor's career was discussed, including films and other work performed as well as some information about their personal life.
It is true that in the film itself, the beautiful trapeze artist and the handsome strong man are the evil characters who attempt to take advantage of one of the "disabled" members of the side show. In the climactic scene the side show performers are going after the two. The side show performers are portrayed as a disabled gang on an evil hunt. Even the character with no arms or legs attempts to move across the muddy ground with a knife in his mouth. But the thing which really disturbed me, was the poor severely mentally handicapped fellow (a "performer" who most of his working life wore a dress), who was also crawling across the muddy ground with a knife in his mouth. This idea of persons with mental and other disability as being evil was actually pervasive in the early 1900's and even today might cause someone who doesn't know better to pause and wonder if such people are really capable of such violence .
At the time of its release, the film took an already devalued group who were feared for no reason other then that they were misunderstood (largely on the basis of appearance), and puts afinger on this irrational fear, not to squelch it, but rather to inflame it. The film was probably deserving of censorship in received at the time of its release (in hindsight) although the issues causing it to receive the thorough examination it did, were probably unrelated to my concerns.
It provides some insight as a historical piece, but not for the average viewer. One wonders how much actual change has occured in the minds of the regular viewers of the 1930's as compared with those today. Many stereotypes still persist, 72 years later.
McNair
My first impression is as a historical piece which provides insight into perceptions of persons with disability at that time in American history. Many of the stereotypes are supported in the film.
I must state that the film by design is a horror film, and the disabled actors (at least those with normal intelligence, there were some who were severely cognitively disabled), must have been aware of how they were being portrayed. In spite of this, additional material provided on the DVD indicates only one actor appears to have felt the experience was a positive one. The film's disabled actors were largely carnival side show "performers" so the opportunity to appear in a film was likely seen as a positive carreer move. Several of the "little people" or actors with short stature disabilities appeared in other films including "The Wizard of Oz" and apparently had relativly successful careers.
In the additional material, each of the actors in the film, disabled or otherwise, are discussed briefly. It is noteworthy to consider the careers of the disabled actors. To the DVD's credit, side show performance is treated with some degree of respect, but the comparison made between a singer with an unusually good voice and a person with a particularly aberrant disability is a stretch. Still each actor's career was discussed, including films and other work performed as well as some information about their personal life.
It is true that in the film itself, the beautiful trapeze artist and the handsome strong man are the evil characters who attempt to take advantage of one of the "disabled" members of the side show. In the climactic scene the side show performers are going after the two. The side show performers are portrayed as a disabled gang on an evil hunt. Even the character with no arms or legs attempts to move across the muddy ground with a knife in his mouth. But the thing which really disturbed me, was the poor severely mentally handicapped fellow (a "performer" who most of his working life wore a dress), who was also crawling across the muddy ground with a knife in his mouth. This idea of persons with mental and other disability as being evil was actually pervasive in the early 1900's and even today might cause someone who doesn't know better to pause and wonder if such people are really capable of such violence .
At the time of its release, the film took an already devalued group who were feared for no reason other then that they were misunderstood (largely on the basis of appearance), and puts afinger on this irrational fear, not to squelch it, but rather to inflame it. The film was probably deserving of censorship in received at the time of its release (in hindsight) although the issues causing it to receive the thorough examination it did, were probably unrelated to my concerns.
It provides some insight as a historical piece, but not for the average viewer. One wonders how much actual change has occured in the minds of the regular viewers of the 1930's as compared with those today. Many stereotypes still persist, 72 years later.
McNair
Wednesday, September 01, 2004
Deconstructing disability: New feet
As I was driving into work today, I heard a commercial for a place called "New feet." Apparently at New feet, you can have a model of your foot made, and they then design foot supports that you can put into your shoes that according to their claims cure just about any back or leg problem you might have (by the way, the supports can fit in any shoe!). Anyway it brought me back once again to the notion of prefall versus postfall in relation to disability. Did feet naturally degrade over time before the fall? To ask in another way, did feet degrade (fallen arches, etc,) as a result of the fall, or were they degradable prior to the fall. This is important as it once again gives an indication of how disability fits into the scheme of God's creative design. Would people have foot problems prior to the fall or did our feet undergo a change as a result of the fall.
It is a principle that creation is degrading, as the Bible says, it's groaning.
"For the earnest expectation of the creation eagerly awaits the revelation of the sons of God. For the creation was not willingly subjected to vanity, but through Him subjecting it, on hope: that also the creation will be freed from the slavery of corruption to the freedom of the glory of the children of God. For we know that all the creation groans together and travails together until now. And not only so, but also we ourselves having the firstfruit of the Spirit, also we ourselves groan within ourselves, eagerly expecting adoption, the redemption of our body. . ." (Romans 8: 19-23). Clearly the degredation of all creation could include the degredation of our bodies in the form of genetic changes, engineered obsolesence, etc. The degredation of of our bodies could include aspects of physical degredation, the kinds of things which could use "new feet." Yet at the same time we must factor in the body's built in means of correcting the results of infection and injury. These processes might have been the gift of God to deal with bodily degredation and injury at the time of the fall, or might reflect the creation prior to the fall.
McNair
(fcbu)
It is a principle that creation is degrading, as the Bible says, it's groaning.
"For the earnest expectation of the creation eagerly awaits the revelation of the sons of God. For the creation was not willingly subjected to vanity, but through Him subjecting it, on hope: that also the creation will be freed from the slavery of corruption to the freedom of the glory of the children of God. For we know that all the creation groans together and travails together until now. And not only so, but also we ourselves having the firstfruit of the Spirit, also we ourselves groan within ourselves, eagerly expecting adoption, the redemption of our body. . ." (Romans 8: 19-23). Clearly the degredation of all creation could include the degredation of our bodies in the form of genetic changes, engineered obsolesence, etc. The degredation of of our bodies could include aspects of physical degredation, the kinds of things which could use "new feet." Yet at the same time we must factor in the body's built in means of correcting the results of infection and injury. These processes might have been the gift of God to deal with bodily degredation and injury at the time of the fall, or might reflect the creation prior to the fall.
McNair
(fcbu)
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