Life in Central Oregon

Things are going well here in Central Oregon. It has been a dry winter.

Inclusion vs Exclusion in the Church

Intellectually disabled individuals, just as any other group of people, have a right to be a part of the whole body of Christ without being denied the blessings of a community of their own. In the neuro-typical world, even in churches, there are many special interest, gender, age similar, married/single or other specifically defined groupings.

The key word is exclusion. Saying that individuals with disabilities should not be segregated, but "included" in the whole church. This is in effect "excluding" them from having their own community.

Every effort should be made to make all people: intellectually disabled, street people, homeless, and any other person made in the image of God; feel totally welcome at any activity at or sponsored by a church. At the same, the same level of support and resource available to any other group that meets under the auspices of the church should be made available to a gathering of disabled and friends.

I have heard said that a women’s, men’s, or a youth group is not the same as a separate meeting for disabled individuals. Maybe its not, but if you regard individuals with disability as members of a social /multicultural group, you will.

Human Rights Violation?

I have a friend who has severe cerebral palsy. He is confined to a motorized wheel chair and his spine is severely tipped to the right side.

When he was a child he did not receive any therapy to straighten his spine. Instead, in his teen years he had a rod surgically placed in his spine. Needless to say, the rod broke in a few years and has not been replaced. He is now in his thirties.

Why is this a question of human rights? He has no memory of his birth family and has been in state care his whole life, even now. Would he have received better care is he had not been poor? Where was his advocate? Who was looking out for his rights? And, he lives in a state with a history of much better care for the disabled than say, California.

He presently refuses to have the rod replaced or go to therapy because it is too painful. His carers are constantly telling him to sit up straight. If I were him, I would slouch too.

Working With Real People

The idea that individuals with intellectual disabilities are just people, only more so, takes many by surprise. The general public wants to be 'nice' to the disabled, they just don't know what to do around them. My counsel is to do whatever you do around your friends.

This statement and the comments in my last post are verified every time I have the opportunity to hang out with other individuals with intellectual disabilities. Yes, my diagnosis of Asperger's Syndrome does allow me membership in that most exclusive of all groups, the"retards', or as I like to see it, those who are most human. We don't have to let culture and society dictate what it means to be human--we just are.

I volunteer at a work place for individuals with intellectual disabilities. For the last several months I have worked one on one or with a small group of clients. One gentleman, "Bert," loves electronics. However, his cerebral palsy does not allow him to do more detailed work like testing appliances, so I help him wrap electrical cords with rubber bands. This is a real job that needs doing. He is always asking for a stiffer or longer cord to wrap because he wants more money and thinks he will get more money if he does harder work.

In another department I work with a small group--two ladies and a gentleman. In this department the main work is shredding documents. One of the things that come with the documents are stickers--all different kinds of them. The problem is that the stickers can be shredded but the slick backing they come on cannot. So, the stickers must be removed and placed on paper. A real job. What I do is help these three people do a real job. For one of the ladies, "Amy," I simply fold back the liner from the stickers so she can pull off a sticker and stick it on the paper to be shredded. She does this as fast as she can move. She does not stop during the entire time I am there and gets impatient when I don't have stickers ready for her. Her only comment will always be "Mama is picking me up" or "the van is picking me up." She will say this many times over the hour and an quarter that I work with her.

The gentleman sitting next to her, "Marty," just likes to have a good time. He loves to laugh. I take the stickers off the backing and put them on the edge of his wheelchair tray where he is to take them and stick them on the paper on the tray in from of him. The task is completely within the range of his abilities. Most of the time he needs to be prompted physically each time to pick up a sticker. That is unless I stick the sticker on his nose or his ear or his forehead or all of them at the same time. This he thinks is the funniest thing in the world. He will laugh himself silly taking each sticker off and putting them on the paper. Some times he will attempt to use both hands simultaneously to double his laughs. Every now and then he will sneak his hand over to Annie's tray and grab her wrist and both would laugh like they had a private joke.

The third individual, "Annie," is relational in every thing she does. She has very limited movement of her hands and arms, so in the beginning I put the stickers loosely of the paper in front of her and had her press the sticker down with her hand. The second time I worked with her she showed me that she could pick up the sticker from the edge of her wheelchair tray, just like Marty could. She has become so adept at her job that I have a hard time keeping up with her. However, as I said that she is relational, she wants to be talked to, looked at, touched frequently to making it worth her while. Sometimes she wants me to put stickers on her hands for a laugh.

Each of these four individuals are just like all the workers we have all run across wherever we have worked. We have all seen the ambitious worker who wants to climb the ladder of success, willing to do harder work to make more money. There is the worker who clocks in and works, day in and day out, and talks about going home all day. Then there is the worker who is every one's friend and doesn't mind a flirt now and then. And there is always the funny guy who thinks they are lover boy and may sometimes need to be prodded to get the job done but is always ready for a laugh, even if it is at his own expense.

Like I said, just people, only more so.

Are Normal People Really Human?

A friend of mine's frequent comment about individuals with intellectual disabilities is, "they're just people." I have amplified this statement to "they are fully human, only more so."

In a class on Mental Retardation at University of California-Riverside we were instructed on the "six characteristics of mental retardation." As the professor lectured on these indicators that set  the "mentally retarded" apart from the rest of us "normals," I was astounded to realize that these were the very characteristics that make all of us human. I realized that every one of us in that room, doctorates included, had in their natures every one of those characteristics. All people have all of the indicators of mental retardation to one extent or the other.

I believe that those are the characteristics of being human. Since the "mentally retarded" have them in a greater degree than the supposed "normals," they are much more human than the allegedly normal people are.

Friendships

All my life I have struggled with friendships and relationships. I have always had a difficult time maintaining relationships with individuals with whom I do not have regular contact. Even when young, I usually have had one friend at a time. One of the reasons is that I have not had the emotional energy to maintain many relationships. My wife has been the one stable relationship for the last thirty years.

Now that all grandparents and both parents are gone, I find it difficult to relate to the remaining family members, especially my immediate family. There never seems to be anything to talk about. They are not interested in any personal or family news that I may have. The thinly veiled condescension in their voices does not inspire me to make contact.

This has not been the case with my friends with intellectual disabilities. Contrary to what many "experts" and special education teachers, it is possible for a "non-disabled" or neuro-typical (NT) person to have a real relationship with an intellectually disabled individual. I can relate most easily with the supposed "retarded" individuals.

Conversations are easy. They care about you and what you have to say. I frequently have pleasant "conversations' with non-verbal individuals. I can say, "Hey." They will smile or shake their head or hands. I say, "you're looking good" or "it's so good to see you." This kind of exchange can go on for several minutes. Or it can be simply me patting their head, shoulders, arm or hand with them responding in kind. Sometime the fact that I choose to stand or sit next to them accomplishes the same purpose.

When I think about the real purpose of a conversation, I realized that the exchange of information many times is the least important outcome. The feeling of connection, intimacy and acceptance is usually the real objective of talking with friends. Finding the vehicle for that conversation is what I find difficult when "talk" is the only avenue that is acceptable.

Sunny Day at the Car Show

Today I went with a group of adults with intellectual disabilities to a local car show. One of the ladies had a birthday today. She turned 33. She was so pleased with the attention. Her mother had baked cupcakes for the group, but had forgotten to give them to us before we left. Our birthday girl was thrilled to be among her friends on an outing.

The highlight of the car show for our birthday girl was seeing three purple cars and one purple blazer. As you might figure out, purple is here favorite color. She usually is wearing something purple, carrying at least one purple handbag, and her nails are frequently painted purple.

After the car show we went to Goody's, a local ice cream company for ice cream for a birthday celebration. Every where we went, people were kind and accommodating. When we took over the ice cream shop the customers behind us were gracious at having to wait for us (there were 14 of us).

When I first moved to Central Oregon, I looked for the same treatment and problems that my intellectually disabled friends faced in Southern California. To be honest I really looked for it, but I rarely saw it. Where I usually saw it was with those who should know better.

Showing Respect

Over the last two years I have spent hundreds of hours volunteering with several organizations whose primary function is providing resources for the intellectually disabled. I have observed much passion, kindness, and care.

During outings the response of the general public has been very interesting. Sometimes they respond as they would to anybody: they will acknowledge with a smile or they will ignore us. Other times the individual will say hello and continue walking. Many times they want to engage but do not know how--they just stand there with a goofy smile and start talking to the "normal" one accompanying the group.

The responses I find most troubling are from those who should know better because they are parents of a disabled individual or are trained staff members. In situations where participants or clients are being transported, I have observed all the staff sitting together in the front with the disabled ones in the back. Another thing is staff members talking among themselves instead of engaging with the clients. I have been troubled too many times by staff behaving like fools trying to get a response from a disabled person they encounter in public, or parents speaking to their adult children like they were a three year old.

Last year at one organization, I asked for a name badge so that I could be recognized as a staff member when we were on outings. After wearing the id badge a few times, I quit wearing it. I realized that the real reason that I wanted the badge wasn't just to inform the public that I was a caring individual that gave of my time to help the less fortunate, but to make sure that they did not think I was one of "them."

If I really believe that the intellectually disabled are 'just people" like I have said on so many occasions, then I should be pleased and proud to be counted among them.

Recreation for the Disabled

I have been volunteering for the last two years with our local Parks and Recreation District in programs for individuals with disabilities. When I started, there were children's programs and two options for adults with disabilities. One option was Therapeutic Recreation, with activities that were "therapeutic" in nature for individuals with physical as well as intellectual disabilities. The other was Special Recreation, with activities that were basically social and recreational in nature. The Special Recreation activities were fun oriented with just hanging out and "going places" as the general idea.

Last Summer we got a new director who had a hospital therapeutic background. The first thing she did was eliminate the "special" completely from the program and rename every activity "therapeutic" recreation. She now wants all activities to be goal oriented. To me this name change is purely political correctness by someone with a medical/political orientation to disability.

There is nothing wrong with bringing challenge to people. Virtually all of the individuals involved in the program are involved in work and vocational programs during the work week. These programs challenge, teach, and move their clients toward achievable goals.

We should treat the disabled the same as we want to be treated. At our jobs we are expected to work toward our goals and try to work toward our capacity. In our leisure time we don't necessarily want to be pushed, challenged, or be always expected to be learning something.

Oregon Update

Last summer we moved to Bend, Oregon. I expected to find university work and work toward a ministry among the disabled at my new church.

Things didn't work out like I had expected. Living on a farm in central Oregon was a dream come true. It became difficult to push hard finding work after my initial applications to all the Oregon universities. After two months waiting for a response and hearing nothing, I realized that God had something different for me.

First I applied to be a volunteer with the Bend  Metro Park and Rec Special Recreation Program. I was finally cleared for this. I started with a Saturday program once or twice a month and later included Wednesday and Friday evening activities. 

God reminded me of what he did through Henri Neuwen and what he wrote in Adam. After several weeks I realized that God wanted me to be humble and become a caregiver for the disabled. I thought for a while, "look how humble I am. I am willing to be a care provider." I was hired as a personal caregiver for a 16 year old boy with severe autism and aggression.

I have also applied to the Interfaith Volunteer Caregivers (affiliated with our local county government) to be a friend, companion,  caregiver to an adult with disabilities. Of course this takes weeks because of the criminal background checks and other paperwork (see the 1/8/10 posting of http://disabledchristianity.blogspot.com/).

Instead of starting a "ministry" to the disabled, God wanted me to pour myself out to fellowship with disabled and give my life to them. I now spend about 25 hours a week with individuals with identified disabilities. I used to spend about 25 hours a week talking about, teaching others how to help, and in general an intellectual approach to the disabled. Now my life and time is spent with and among those God has called me to serve.

Haven't posted for a long time

A blog of interest is http://disabledchristianity.blogspot.com

Living Inclusively

Living truly inclusive lives is very difficult. I find that few people are inclusive with any but their immediate families. How do can you be totally inclusive without losing your identity? Or should we?

It could have something to do with how we really see humanity and being human. It could have something to do with our own feelings of doubt about our own worth. I guess if we are to lose ourselves into Christ, one way to do that is in relationships. When we find the humility to be in right relationship with everyone and everything, then we will find shalom and an inclusive life. I think that Henri Nouwen wrote about that experience in "Adam".

As we go through life we will make decisions that may lead us away from our present relationships, at least temporarily. I have friends that I see often, and others that I don't see frequently. However, when my heart leaps at the thought of them or when I do see them, these are true friends. It doesn't matter whether it has been 2 days or 2 years, we can pick up right where we left off. Anyone else is a colleage or just someone I know.

I guess the point of this ramble is that when we talk of inclusive lives, we are talking about several things. One is relationship, another is inclusion, and the other is refusing to participate in exclusion.

Who do we long to spend time with? When we plan a party, who do we decide to invite, and who do we decide to omit? Do we have events that include individuals that have disabilities and others that do not and why?

A Boy, a Frog and the Other Side of the Paper

A few days ago I visited a student teacher subbing for her master teacher in a first grade general education class. The children were finishing up work for an Open House display. One of the tasks was completing a drawing of a frog on a 9" x 18" white drawing paper.

One boy completed his drawing and sat admiring it. He stood up, went over to an instructional aide and thrust the picture toward her face trying to scare her with his drawing. He repeated this with the other aide, the student teacher, and several of his classmates.

The problem was that while he was looking at his drawing of the frog, he was trying to scare others with the blank side of the paper. He did not realize that no one else could see what he was seeing. I knew this incident was a great philosophical moment, so I took anecdotal notes.

Later, as I thought about the boy and his frog, I saw this as a perfect example of social construction and societal perceptions. When we look at people and events, we have to realize that no one else is seeing what we see. It is only when we are totally aware that the other side of the picture is blank, or something completely different, that we can compassionately communicate, understand, and relate to others. This is especially true when we relate to individuals whose life experiences are so totally different from ours.

When we understand that we are almost incapable of knowing what it is like to be extemely poor with no prospects, homeless, mentally ill, or developmentally disabled we can begin to have a glimmer of hope of creating a culture of social justice. Growing up or living in circumstantial poverty is far different from growing up in generational poverty. Having a mental illness is totally different from being developmentally disabled. If one doesn't experience a developmental disability or have a child with one, there is no way to understand what it is like.

It is possible to be an "expert" in the diagnosis, care, and "treatment" of individuals with intellectual disabilities and have very little understanding of the real life experience of the subjects of their expertise. It is also possible to have true compassion and empathy for the developmentally disabled and not really understand the interplay between strengths, deficits, spike skills, and processing difficulties. I feel that we have to be honest, strive for humility, and understand that we are incapable of understanding the lived lives of others.

Disregard

Disregard, or from a less negative perspective, the lack of regard, is something that individuals with developmental disabilities are very familiar with. In fact, it is probably the most common treatment received when not encountering blatant abuse. When the lack of regard is intentional, it is usually more blatant and possibly done with a bit of arrogance. This kind of disregard is more painful, but, as it is intentional, I think that it can be addressed directly, possibly with some success.


However, the unintentional lack of regard is far harder to address, especially when the perpetrator is totally unaware and "good intentioned" and should know better. You will hear excuses like, "I didn't mean anything by it," "Don't be so sensitive or petty", or many other dismissive remarks. Many times they will not even remember the occasion. Where unintentional lack of regard becomes the most surprising is when is it is done by individuals who should know better and who have a blind spot the size of a Mack truck. It is similar to the individual who is completely unaware of or refuses to accept the existence of male and/or white privilege.

This weekend I was a presenter at a conference for a national Christian professional organization. I am also on the organizing committee. Also in attendance were various members of the Sunday School class for developmentally disabled adults that my family and I attend. My last presentation was during the last breakout session of the day. The presenter (a special ed teacher) before me had such an "important" presentation that he didn't finish his presentation until the break was over and 5 minutes into my time. The contingent of developmentally disabled adults that were waiting in the hallway with me wondered why the speaker wasn't stopping when his time was up. When we finally were able to get in, the speaker took about fifteen minutes to gather up his stuff, which in itself was also very distracting. As a person with Asperger's Syndrome, it is difficult for me to get started when I don't have time to adjust in the setting. One of my accommodations for my classes at UCR was not having to go first when giving class presentations.

This was not the end of the story. While the presenter was packing up, three full-time special education professors from the host university came in and out talking loudly, laughing and joking among themselves. They were all waiting to escort the previous presenter to another session.

I was well known to the three professors and the fact that we were all colleagues should have been a trigger for respect and regard. However, I am open about my Asperger's Syndrome problems and experiences, so, was I lesser because I do not deny my disability (as others hide or don't discuss theirs)? Was it that most of the individuals waiting for the next presentation were developmentally disabled? I don't know the why, but I do know how the lack of regard felt, and the discomfort it gave my close friends who experience disability in a more personal and public way than I do.