Learning from my friends

This past week we celebrated the 16 year of our Light and Power group at my church. Kathi and I started the group way back then and have learned a great deal over the years. As I was reflecting on that very idea, what I had learned, the thing that jumps out at me is the perspective that adults with intellectual disabilities have about themselves and about others. It is a perspective that I am still trying to learn...or perhaps would be a process of unlearning much of what I currently know about ideas of intellectual disability.

You see, 1) my friends largely do not see themselves as disabled and 2) they don't see me as different from them in any significant way.

I, on the contrary, 1) see them as disabled and 2) see myself as different. I have good reason for my perceptions, however, because on the basis of all the assessments I have been taught to value, I score higher than they do. So obviously that implies that we are different in characteristics that are very important.

My friends are happy with their lives, but I see them as disabled.
My friends do not see themselves as disabled, but I see them as disabled.
My friends do not see any difference between they and I, but I see them as disabled.

The biggest lesson I am learning, is not to judge others, from the others who I and other professionals are constantly judging. Rather than just seeing people as people, I evaluate them and see them as disabled. I have been trained well both professionally and by my society. But I am increasingly evaluating the notions which are entrenched in my thinking and finding that perspective is not only wrong morally, it is wrong logically. No benefit is provided that I can really see by many of the labels provided. They are provided such that menus of services can be made accessible. I have to have a particular label in order to receive a particular service. Perhaps this makes sense for agencies. But why would such a professional perspective find its way into my personal life? Why would such a perspective find its way into the church? Is there really any benefit in me convincing myself and those with intellectual disabilities that we differ from each other? Because I am the one with the higher score on the test used to make the differentiation, perhaps I might be more apt to embrace the assessment. But my friends with intellectual disabilities teach me with their lives that those assessments are in many ways foolish and do not reflect reality.
McNair

Be compassionate, don't evacuate

In my entry of 11/18/08, I spoke about the earthquake drill here in Southern California, and the problematic response I observed at one high school.

My friend Michael Hoggatt, makes a similar observation in his blog entry today regarding a situation in Texas. Check it out at http://manger-hoggblog.blogspot.com/2009/02/disasters-drill-in-buda-texas.html

McNair

Adults as children

A friend of mine, recently sent me a link to his weblog. As I read it, I was impressed by his premise that adults with disabilities are really children because of their supposed "mental age" functioning. I have no idea why anyone would embrace the notion of mental age. I would be happy to go toe to toe with any psychologist over the issue. As an educator, it tells me nothing, absolutely nothing about a person. Well I take that back. It tells me that the person who uses mental age is very comfortable in using a way of describing people that demeans them. I have seen many mean things done in the name of mental age. And as I say, if you are told that I have a mental age of a 12 year old (I do in a lot of ways, and may I never change) what does that tell you about me? Does it tell you that I didn't really progress past 6 grade in terms of my understanding of mathematics? Does it tell you that I am a fun loving person with the heart of a child? Does it tell you that I am still going through puberty? I mean it is really not helpful. Then if you tell me that I have the mental age of a 3 year old, well, I just don't know what that means.

I recall when I was working in an intermediate care facility in the 1970's. It was at the time of deinstitutionalization. I had developed a friendship with a senior woman who liked to watch "The Guiding Light" every day. Some days I would watch with her. Because I was responsible for carrying out occupational therapy services designed by an OT, I had access to her chart. It indicated that her IQ was 27. I don't know what mental age that would translate to, but this was a woman whom I would discuss a soap opera with..."do you think Sarah's child is from Bob?" It is just not helpful. If you want a graphic example of this, view the Marc Gold video I have a link to in this blogsite.

But in my research meeting that I had the other day, I saw it again. We are to treat persons with intellectual disabilities as children. My response to that is that those people do not know people with intellectual disabilities. They let their socially constructed notions of who they are determine their actions towards them rather than attempt to find out the truth. It was fascinating, although discouraging, to me that the social constructions I was proposing to research were actually being acted out in front of me by those who were evaluating the research. Of course they were clueless to this fact and only saw themselves protecting my subjects.

Personally, I am constantly on the look out for those wrong notions of who disabled people are in myself. I really bugs me when I find one and wonder how I allowed that to exist in my psyche. People think they are protecting when in reality they are contributing to further wounding of devalued people. Revisit Wolfensberger's wounds in this blogsite. Ask God to help you see how you contribute to the wounding of others. It doesn't matter too much either whether or not you are well intentioned. I need to evaluate my best intentions in the light of what is true and if my intentions take me to a place where people are devalued, then I need to have the intellectual honesty to grow up and quit saying "I didn't mean it". If you keep doing something when there is the possibility that you can change through knowledge but you resist knowledge, then independent of your intentions, you should be blamed.

Adults with intellectual disabilities are adults.

If YOU treat them like children, YOU are wrong.

If you treat them like adults, they will rise to your expectations and drive you to repentence for the contribution you made to their wounding.

McNair

Gandhi on the fight

My daughter, Amy, sent me this great quote from Mahatma Gandhi.

First they ignore you, then they ridicule you, then they fight you, then you win.

This has been my experience a bit in the work in disability ministry. We had been ignored for a long time. I have been told that disability ministry is not a priority, in other words, go away we want to ignore you. I have been told that I am wasting my time. I have heard from many others that church leaders have told them the same kinds of things.

I am happy to say that I haven't heard the ridicule from the church. I think in their heart of hearts them know that people with disabilities should be present in the church. So although they may resist what they know is right because they are afraid or don't know what to do are lazy or even negative in their attitudes, they have not engaged in ridicule.

But they do fight you. Have you ever heard these kinds of comments?
We have never done it that way.
The Sunday School class meets on the second floor and we don't have an elevator.
We got to keep the homeless man out of the bushes.
The girl with down's syndrome disrupts the junior high Bible study.
We need to get rid of the mentally ill woman.
Sunday School teachers won't teach if the boy with autism is in the class.
We will have to change ...
Why should people with disabilities be a priority for ministry? (one of the worst I ever heard)
It will be too expensive.
I don't have any training.
They are a black hole for service.
They will drive others away.
They are too disruptive.
and so on and so on.

But if you believe Gandhi, if you persist, in the end...YOU WIN!

I think I am beginning to feel the change in momentum towards our side. It's like a football game where one team is ahead, but things happen that tell you that the other side is coming back. In reality, in the church we are all on the same side, although some don't know it yet. But there are many things happening. I can tell you that there is just an increasing interest in issues of spirituality and disability, and again it is finding its way into the church. At times Christians are leading the way in this momentum change and that is exciting. But we can't be self congratulatory yet...if ever.

Not too long ago, I was picking up a friend who works at a sheltered workshop in my town. He was going to be a guest speaker in one of my classes. Anyway, as I waited for him, perhaps a hundred adults with intellectual disabilities exited the building. There were faces I recognized and people I greeted, but I bet I knew 15% of the people at best. I hope others in that group have their own places to worship, but I can't help thinking they don't. Multiply that by the number of communities, take in those who are in supported employment settings or adult day care. What about the thousands of group homes that exist in our communities? If a church has 3 or 4 adults with intellectual disabilities in their congregation, that is great. But there are many more of these folks in the community.

May God open our eyes to needy people in our community. May God draw us to them and them to us. May God receive the glory when we are obedient in loving our neighbor.

McNair

Shock and dismay at insensitivity

Well, I am in the process of finishing up some research I have been doing about social constructions of disability.  I surveyed church leaders, then I surveyed church attenders (both articles published in the Journal of Religion, Disability and Health).  The final study I wanted to do (and will do, I might add) is a survey of adults with intellectual disabilities.  I am asking them questions about a variety of social constructions such as whether they are angels, or heroes, or if they have a good quality of life.  However, while having my survey reviewed, the process came to a screaming halt over a question deemed insensitive and inappropriate.  What might that insensitive question be?  The question that I plan to ask adults with intellectual disabilities is...

Do you think mothers should abort babies with disabilities?

The reason why this is insensitive?  I might cause them mental distress, or they might cry, among others.  Another raised the issue of a research literature on this question.  Do you really think that secular academia is in any way interested in the answer of disabled adults to this question?  Do you really think it has been asked dozens of times before?

I related that statistics indicate that 90% of mothers who are prenatally diagnosed as carrying a child with down's syndrome abort, which was greeted with disbelief..."That can't be true"!  I could have gone into neural tube defects, and the looming dangers growing out of the human genome project.  The threat is true, and as Wolfensberger describes, we are in the midst of a new genocide.  But if your group is being systematically identified for death and then are killed, it is insensitive of me to ask whether you think that is wrong because that might upset you.  Damn it!  I hope it upsets you, and I hope your voice of being upset will be heard so that it will stop!  And stop NOW!

But people don't get it.  They think adults are children.  They think they don't care about such issues.  I feel like the chauvinistic man who pats the woman on the cheek and says "Don't you worry your pretty little head about these man issues."  Disabled person, they want me to pat you on the head while people who are like you are being exterminated.  They want me to tell you, "Don't you worry your poor, little head about the countless innocents who are murdered because of social constructions."  But I won't do it.  What I will do although it is in a very very small way, is I will try to dispel the myths that support those horrible acts and do what I can to give you a voice, however small, however insignificant that voice may be.  I don't know how those with intellectual disabilities will respond to such a question, but they will have the opportunity to respond.

My friends with intellectual disabilities, may God give me the ability to give you voice, though it be a whisper, and if it upsets you and makes you cry, that just proves that you are a normal human being because there are many of us who are upset, and cry with you.

McNair

A change in the family

I have a friend who has a physical disability. He developed the disability later in his life as the result of a traumatic brain injury and I never knew him as someone without a physical disability. We have lots of discussions about a variety of issues, however, last night, both as we sat together over a cup of coffee, and earlier when he addressed a class of mine, on several occasions he talked about how he has been feeling recently like his mind is clearing. He said one of the major results of his mind clearing is the realization as he says that, "I am not stupid!"

He talks about how his family has changed as a result of his becoming disabled. In his case, he feels the change is for the negative, like perceptions that people might have had about him for a long time are now coming to the surface evidenced in their treatment of him. I think he feels that his care, his need for various kinds of supports have brought the negative feelings out. His reply to his family is expressed in his pronouncements to me and last night's students. "I am not stupid!"

Clearly, he is not stupid. But I wonder about that, particularly in the case of someone who becomes disabled later in life. To those to whom you might have been less than kind, it is like the chickens come home to roost. But even to those with whom you have the best of relationships, it can become difficult. We are not prepared for the demands of a disabled family member, especially if we have fallen into the ruts of a comfortable family routine. I have to subjugate my desires to my family member's care and that is difficult at best. I can't imagine someone having to take care of me, for example. I am 6'7" and weigh every bit of 250. How would you like to have to move me around? And as nice of a guy as I might want to be, it will still be very difficult.

My friend sees himself as just a person which by the way is what he is. But he gets frustrated with the treatment he receives from his family and those in the community. He has come to grips in many ways with his disability, his limitations. What he has not come to grip with as of yet is the way people treat him as a result of his limitations. He feels he is being treated in ways that should have nothing to do with his disability. As he has grown into his disability (so to speak) many components of it are absolutely irrelevant, however, some of those same components are used by to society to define him, at times, as stupid and that is really frustrating.

McNair

Fingerprinting...again

As I have discussed elsewhere in this blog, I try to spend an hour or so, once a week at a local group home for adults with intellectual disabilities. It is a good home. I sit there with the 5 folks who live there, over a coke and an ice cream cone. At other times, I involve them in church activities, or occasionally take some of them to lecture in my classes. It is amazing how these people have changed the lives of new teachers. Anyway, a while back, I completed the fingerprinting at the local police station, and turned it in to the home operators. Somehow, it was not what was needed. I can only assume that the police department doesn't know to do fingerprinting or something (of course I am not serious) but it was insufficient for those who monitor the group home. So I went again today and was fingerprinted again. Just FYI, it was $77 today and I think it was over $60 the last time I had it done.

As I was chatting with the nice gal who was taking my prints, I told her that I was a volunteer at a group home for adults. She considered the categories on her form for the purposes of charging me.

"There is not a space on the Department of Justice forms for people who want to volunteer with adults in a group home or a senior citizen center for that matter" she said. "If you were working with children, there is a price for volunteers" (I think it was 35$) "but not for adults. Are you going to be employed by the group home?"

I had actually offered to the group home the idea of paying me $1 a month or something, so I wouldn't and they wouldn't have to go through the continuing hassle of dealing with those in social services who were harassing them. But I cannot tell you how angry it would make me that I have to be paid in order to be a person who interacts with adults with intellectual disabilities as a friend. Clearly $1 a month would not change my motivation in wanting to just visit friends, and provide them various opportunities to enrich their lives, but it really bugs me that it would make me just one more person on salary in their lives. The regulations built to "protect" them are actually killing them socially. Who would want to go through the hassle of getting fingerprinted numerous times just to befriend a person with a disability? I mean it is not like people are lining up to befriend group home residents, people who are truly worthy of friendship, but I guess that is how social services in America likes it. "Leave it to the professionals!"

Well we left it to the professionals, and the result was overcrowded, brutal institutions populated by innocents living wasted lives...but it was sure convenient for all involved. To once again quote Burton Blatt,

To live with our retarded children, our handicapped friends, our aging parents does place burdens on all of us, but what we must learn from the nightmare of institutionalization is that these burdens cannot be avoided or delegated, for to have a decent society we must first behave as decent individuals. Ultimately our society will discover that it is easier to meet the responsibilities to our fellow man than it is to avoid them. (A return to purgatory, From In and out of mental retardation, 1981, p. 268)

Unfortunately human services, instead of lessening the burden contributes to it. I can understand why someone with a heart to help would throw up their hands and say "I give up!" We in human services really don't want you to interfere in our plans (be they IEP's or whatever) because you will make things difficult for us, and we would prefer to avoid our responsibilities, particularly when they are messy. It is all about therapeutic power that makes decisions on the basis of administrative convenience.

McNair
(fcbu)

Making new friends at the Joni and Friends, "Through the roof" conference, 2009 (post # 400!)

Last weekend, Kathi and I attended the Joni and Friends, "Through the roof" conference in Pasadena, CA. As usual, the conference was wonderful. There were probably about 200 people in attendance. But these are not just "people." These are folks who all have a heart for people with disabilities and disability ministry, so it is a rarified group.

Keynote speakers were great. Joni was wonderful as was the President of JAF, Doug Mazza. Kathi and I each did a break out session in the new NACSPED (National Assn. of Christians in Special Ed.) track which I think were well received. I also had the chance to lead a discussion group of special educators that was fun and informative.

But for me, one of the real highlights of the conference, was meeting Arlyn and Will Kantz. These folks are involved in two very innovative projects.

The first is Bethel Fellowship Church. It is a church being designed from the bottom up to be inclusive of people with autism. The ideas behind its design are very innovative much of them based upon their experiences with their own son with autism. Bethel Fellowship is an "experiment" that the Christian church should be watching. Arlyn blogs about their thoughts at http://bethelfellowship.blogspot.com It is truly exciting what they are up to.

The second is a curriculum for teaching language among other things that is called Precision Songs. The website is, http://precisionsongs.com The curriculum revolves around teaching children simple songs that they learn to sing. Then, critical words and phrases are removed such that they continue to sing, however, the person singing on the CD does not sing those portions. Ultimately, the person on the CD just states questions and the children just respond with an answer. It is very clever. From the little I have seen of the curriculum, I would recommend it. I hope to actually do some research on the curriculum with autistic children in the future. I will let you all know what I find.

But God bless the Arlyn and Will. God is using them. Follow the development of the church and their lessons learned at their weblog, and give the curriculum a try!

McNair