This past week I was speaking to one of the classes I teach about the way people with disabilities are percieved, often negatively, by those around them. This is in spite of the fact that they think they are doing fine. Their only experience is their life experience and as far as they are concerned they are ok. I thinking through that, I came up with a metaphor, which might be helpful to some people in terms of understanding the point I was trying to make.
Now, I am a man. I was born a boy, and have grown up male. All I know is what it is like to be a male. Of course I love people of the opposite gender. I first loved my mother, then loved my wife and for the last 19 years have loved my daughter. I love those women, but I have no idea of what it is like to be a woman. I have no idea of what it is like to be three of the closest people to me in my life. I have some ideas of what it might be like to have me as a son, or as a husband or as a father, but I really don't know. Women tell me what they are thinking sometimes, but I really don't know what it is like to be one. Obviously, they don't know what it is like to be a man either. My mother, wife and daughter only know my thoughts to the extent to which I share them with them, and I have been told by them at times that I don't understand (ostensibly their women's perspective). I am sure that that is the truth.
However, imagine that I decided that because women are not men, their lives are in some way diminished, disabled. They think they are just fine as women, however, I think I know better. I therefore impose my beliefs on them. I think I know what it would be like to be a woman, and if I were a woman, I would be upset that I am not a man. I convince them that they have a poor quality of life, or get them to believe that their physical womanness is an impairment of which they should be ashamed. Perhaps I conclude that their differentness from me is not a difference, it is an impairment to which discrimination is attached (some of you may argue that this actually occurs, and I would be hard pressed to disagree). But to continue to press this metaphor, instead of me as a man seeing women as part of the natural diversity of humanity, as my equal yet in some ways different from me, imagine that I see them as "other," as very different from me. Not only that, imagine that I think they are dissatisfied with their lives as females and that they would choose death over being a woman, so deep is their wish they could be a male like me.
Can you catch where I am going with this metaphor? I think there is a lot overlap with the way in which people with impairments are percieved, particularly those with disabilities that they are born with. I only know what it is like to have my level of cognitive ability. So I assume those with a lower cognitive ability level would wish to be me. I only know what it is like to have my other characteristics, good vision, healthy, etc. And because I am satisfied with my life having my characteristics, I assume that those who don't have my characteristics are dissatisfied with their lives. That because they are not me, that they are in some way suffering, or depressed, or something else negative in character.
You might say that this sounds foolish, however, this perception drives the movement to prenatally diagnose and abort babies with disabilities. Take down syndrome for instance. We are told by the medical profession that obviously, people with down syndrome suffer, are dissatisfied with their lives because they don't have normal intelligence, or other characteristics that we (people without down syndrome) have. At least that is what people think who are behind the prenatal diagnosis and abortion movement. They take the lives of infants with down syndrome out of "compassion" for what the persons with disabilities are not.
But just as certainly as I don't know what it is like to be a woman and a woman doesn't know what it is like to be a man, I dont' know what it is like to be a person born with down syndrome. All I do know about that life experience is what they tell me about that experience. And what do they tell me? They tell me that they are happy with their lives. Many would say that they don't think they even have a disability (something they perceive negatively, probably through their socialization). Yet I believe my daughter when she says she is happy (even though I don't know what it is like to be a woman) but I don't believe the person with down syndrome when he or she tells me she is happy because I say that I would not want to live with that disability if I had it.
In the same way that I don't know what it is like to be a woman, I don't know what it is like to be a person with a disability. In the same way that a woman does not know what is like to be a man, a woman without a disability does not know what it is like to be a person with a disability.
May God forgive our society for projecting its negative perceptions on people with disabilities and then killing them on the basis of our negative perceptions through abortion, infanticide and other approaches. May God stop us as well.
McNair
Discussion of issues related to Christianity/theology and persons with disability, and disability ministry hosted by Jeff McNair, a Special Education professor. Jeff and his wife Kathi have been involved in ministry with adults with intellectual disabilities for 40 years. (all entries are © Jeff McNair).
Tuesday, September 26, 2006
Wednesday, September 20, 2006
The gift of time
As I mentioned, I just got back from a wonderful conference at the University of Aberdeen in Scotland, hosted by Dr. John Swinton, which featured Dr. Jean Vanier and Dr. Stanley Hauerwas.
One of the ideas which came through at the conference was the notion of being a "friend of time" or giving "the gift of time" to persons with cognitive disabilities in particular, but to persons with disabilities in general. I believe it was Vanier who spoke about how those who are well connected in society have little time while those who are not well connected have a great deal of time available to them. The question is how to bring these two groups together. One way is for the well connected to slow down. To become a friend of time rather than a slave to time. It requires serious life changes on their part to make this happen.
Coincidentally, as Kathi and I were hurrying from flight to flight on the way home, at one point I exited the plane behind a man who appeared to either have hemiplegia or who had had a stroke. His slow movement caused the line to slow down quite a bit. It struck me even in that situation, that I needed only to slow down a bit to his walking pace to still get where I wanted to go. I was literally physically slowed down, and for a moment experienced "exiting from an airplane" from his perspective in terms of the time it took.
The conference conversation also talked about taking the time to just have fun together with others. Vanier spoke of how most of the time he spends with his friends with cognitive disabilities is spent "fooling around" with them. I was encouraged by this from such a respected man as that is how I spend much of the time when I am with my friends with cognitive disabilities. He said there is also lots of celebrating of little things in life, taking time to celebrate those things.
For about 5 months of this year, I was spending one evening a week (for about an hour or so) at a group home on my way home from work. We would talk, eat some ice cream, have a catch with a baseball, or they would encourage me as I try to learn to play the guitar. They are always there, ostensibly waiting for me as I hurry from place to place. Being with them was a chance for me to slow down and try to be a friend of time with them. I the connected one, being with those who are less or not connected.
Luke 12:48 says, "every one to whom much is given, of him much will be required..." Much will be required of the well placed in society, not the least of which is their time. I am well placed, but even the well placed know that they have time if they make it. Please don't tell me you are too busy, because I am too busy too. But I have the ability, partly because I am well placed, to become a friend of time, and give of my time to those who would enjoy my company. It is a choice I have to make. It begins with me being realistic with myself, and calling myself into account for the choices I make.
McNair (fcbu)
One of the ideas which came through at the conference was the notion of being a "friend of time" or giving "the gift of time" to persons with cognitive disabilities in particular, but to persons with disabilities in general. I believe it was Vanier who spoke about how those who are well connected in society have little time while those who are not well connected have a great deal of time available to them. The question is how to bring these two groups together. One way is for the well connected to slow down. To become a friend of time rather than a slave to time. It requires serious life changes on their part to make this happen.
Coincidentally, as Kathi and I were hurrying from flight to flight on the way home, at one point I exited the plane behind a man who appeared to either have hemiplegia or who had had a stroke. His slow movement caused the line to slow down quite a bit. It struck me even in that situation, that I needed only to slow down a bit to his walking pace to still get where I wanted to go. I was literally physically slowed down, and for a moment experienced "exiting from an airplane" from his perspective in terms of the time it took.
The conference conversation also talked about taking the time to just have fun together with others. Vanier spoke of how most of the time he spends with his friends with cognitive disabilities is spent "fooling around" with them. I was encouraged by this from such a respected man as that is how I spend much of the time when I am with my friends with cognitive disabilities. He said there is also lots of celebrating of little things in life, taking time to celebrate those things.
For about 5 months of this year, I was spending one evening a week (for about an hour or so) at a group home on my way home from work. We would talk, eat some ice cream, have a catch with a baseball, or they would encourage me as I try to learn to play the guitar. They are always there, ostensibly waiting for me as I hurry from place to place. Being with them was a chance for me to slow down and try to be a friend of time with them. I the connected one, being with those who are less or not connected.
Luke 12:48 says, "every one to whom much is given, of him much will be required..." Much will be required of the well placed in society, not the least of which is their time. I am well placed, but even the well placed know that they have time if they make it. Please don't tell me you are too busy, because I am too busy too. But I have the ability, partly because I am well placed, to become a friend of time, and give of my time to those who would enjoy my company. It is a choice I have to make. It begins with me being realistic with myself, and calling myself into account for the choices I make.
McNair (fcbu)
Monday, September 18, 2006
The rectitude of doctrine vs. the rectitide of love
I had the pleasure of attending a conference last week at the University of Aberdeen in Scotland. The conference was hosted by Dr. John Swinton, and featured Dr. Stanley Hauerwas, a theologian/philosopher and Dr. Jean Vanier, writer and founder of the L'Arche communities.
I asked Dr. Vanier why he thought it was that the church has not been as responsive to persons with disabilities as L'Arche as endeavored to model. His response was that we as a church are focussed on "the rectitude of doctrine" when we should be focussed on "the rectitude of love." The rectitude of doctrine vs. the rectitude of love is something worth thinking about. No one is implying that doctrine is unimportant. Rather, doctrine can be dry and harsh. Love by comparison can be soft and accepting. In the case of persons with disabilities, we need love and doctrine to be as correct as possible.
May God open our eyes to the rectitude of love.
McNair
I asked Dr. Vanier why he thought it was that the church has not been as responsive to persons with disabilities as L'Arche as endeavored to model. His response was that we as a church are focussed on "the rectitude of doctrine" when we should be focussed on "the rectitude of love." The rectitude of doctrine vs. the rectitude of love is something worth thinking about. No one is implying that doctrine is unimportant. Rather, doctrine can be dry and harsh. Love by comparison can be soft and accepting. In the case of persons with disabilities, we need love and doctrine to be as correct as possible.
May God open our eyes to the rectitude of love.
McNair
Friday, September 01, 2006
Assisting to gain independence
I have a friend experiencing a severe physical disability. He became disabled later in his life. He was already established with a job, family, etc. Most of those aspects of his life have been lost or significantly changed as a result of his disability. However, there are are positives and negatives in those changes he himself has reported to me.
As he has recovered somewhat from the original insult which caused his disabling condition, it has been interesting to see the interaction between him and his family. They have done just about everything for him for several years, and have mostly done those things joyfully. Interesting, however, that as he begins to get some of his abilities back (taking care of his own toileting needs, making various decisions about his life, etc.) there seems to be an almost resentment and resistance on the part of his family towards those changes. They are used to him being dependent upon them and as he gains in independence, they kind of resent it. I would have thought they might welcome the independence as it would free them up somewhat, and they could celebrate the growth he is showing.
It reminded me of the parent who struggles with their teen who chafes against the restrictions of the household. I have never really had experience in this area with my own grown up children. We have always gotten along famously. I have been blessed in that I can't even remember a real argument with either of them. But is it still somewhat disorienting for them to become as independent as they are. As a parent you live your life caring for the little ones you love so very dearly, and because you have done a good job in their upbringing, they become self-confident and independent, heading off to live their lives. But because independence is all so new to you as a parent(even though you see it coming) it does kind of disorient you.
It is my prayer that my friend's family will see my friend's growth as an occasion of celebration and joy, and will increasingly turn over the decisions of his life to him. I hope this not only for my friend, but also for the family.
McNair
As he has recovered somewhat from the original insult which caused his disabling condition, it has been interesting to see the interaction between him and his family. They have done just about everything for him for several years, and have mostly done those things joyfully. Interesting, however, that as he begins to get some of his abilities back (taking care of his own toileting needs, making various decisions about his life, etc.) there seems to be an almost resentment and resistance on the part of his family towards those changes. They are used to him being dependent upon them and as he gains in independence, they kind of resent it. I would have thought they might welcome the independence as it would free them up somewhat, and they could celebrate the growth he is showing.
It reminded me of the parent who struggles with their teen who chafes against the restrictions of the household. I have never really had experience in this area with my own grown up children. We have always gotten along famously. I have been blessed in that I can't even remember a real argument with either of them. But is it still somewhat disorienting for them to become as independent as they are. As a parent you live your life caring for the little ones you love so very dearly, and because you have done a good job in their upbringing, they become self-confident and independent, heading off to live their lives. But because independence is all so new to you as a parent(even though you see it coming) it does kind of disorient you.
It is my prayer that my friend's family will see my friend's growth as an occasion of celebration and joy, and will increasingly turn over the decisions of his life to him. I hope this not only for my friend, but also for the family.
McNair