A sad lack of understanding

Well, I had an interesting past two weeks. Two weeks ago I was in Washington D.C. at the American Association on Intellectual and Developmental Disability conference. I didn't really like the format of the conference, but that is just a personal preference. What was more problematic, was that one of the main presenters was a higher up representative of the Human Genome project. I was fascinated to learn that the human genome only has about 20,000 genes, which is much less than I had been taught. Also that the wild mustard plant that populates the chaparral hills of Southern California has about 22,000 genes. Don't know what to make of that, but it does give you pause.

The larger question for me, however, is the implications of the human genome project to the future of persons with intellectual disabilities. Although the presenter spoke of genetic diseases that can be better understood and such, my mind was elsewhere. At the close of the presentation, there was the opportunity for questions. One question was asked, and then I couldn't keep silent any longer...

"The elephant in the room here, is that knowledge of the human genome and the understanding of genes that cause disability will lead to prenatal diagnosis and abortion of persons with various disabilities as has happened to people with down's syndrome. I personally do not want to live in a world without persons with intellectual disabilities. How would you respond to this concern?"

The presenter stammered about how he learned lessons from disease in his life, and then made a quick departure. I left wondering, however, whether the organization, AAIDD, or at least those who scheduled the presenter, had any notion of the connection between prenatal diagnosis and abortion of persons with genetic disabilities, or whether they supported such a connection as evidenced by the presence of the presenter. I quit the organization in 1992 when they had the leader of Planned Parenthood as a keynote presenter. What conclusion could possibly have been drawn from such a presenter other than that the organization supported the abortion of persons with intellectual disabilities. It has only been recently that I have rejoined the organization, however, I assure you that I will do what I can to change it.

During the same session, another presentation was made about the application of technology to the life of an adult with alzheimer's disease. It showed how everything from monitoring the taking of medication, to phone use, to the opening of the refrigerator or whether the stove was turned on could be done. It all seemed very cool, however, such monitoring at a distance at least in part leads to the distancing of people from people who need support, need human contact. I no longer need to have direct contact with a loved one, I can just use technology to monitor from afar. It was also reminiscent of 1984. Overall a very scary presentation, the scariness of which the presenter was oblivious to.

I thought that this is how these things happen. We chart the human genome, and the result is abortion of persons for any type of difference that we do not particularly want. It is not as if this kind of thing were not already occurring. But AAIDD was oblivious. The distancing of people from people, and the move headlong into the total monitoring, by computer of a persons life. Once again, the organization was oblivious.

Then this past week, I helped to facilitate a training on Social Role Valorization on the campus of California Baptist University. The training was excellent, and reinforced to me disconnectedness of the conference from the realities of life for and with disabled people. I honestly wonder who AAIDD thinks persons with intellectual disabilities are? Are their lives to be prevented? Are we to turn their care over to technologists?

Dr. Burton Blatt, a university special educator, and advocate for the closing of institutions in the 1960's wrote the following:

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)

But the take home lesson is that one of the premier organizations on intellectual disabilities doesn't get it. They don't seem to know people with intellectual disabilities like I and others who were with me at the conference seem to know people with such disabilities. This lack of understanding is very sad.

McNair

Chicken soup

I recently had the opportunity to attend the American Association on Intellectual and Developmental Disability national conference in Washington D.C. I went with two great friends, Michael Hoggatt and Marvin Miller and although we had a great time, there were some aspects of the conference that were somewhat disappointing. But I will share that in a separate entry.

One highlight of the conference was a brief presentation by Diane Richler who is the president of a group called Inclusion International. I can't speak for the organization, don't know much about it, however, Diane provided a wonderful illustration about the notion of including everyone who would choose to be a part of a group. She said that when she was younger, her family was preparing a special dinner. Her mother cooked one of her famous roasted chickens. However, just as dinner was about to begin, a group of aunts, uncles and cousins arrived at the house. Because she had prepared a roasted chicken, there wasn't enough food for everyone. In her family's case, the family was told to "hold back" such that not everyone was able to eat, just the guests. Her point, however, was that with planning, there could have been food for everyone. If, for example, her mother had made chicken soup, everyone could have had dinner. However, because she made a roast chicken, everyone could not be served.

Although her point was not about the church, I immediately made the connection. If churches serve "roasted chicken" then there will not be enough for everyone to be a part. "Roasted chicken" in the way we do religious education, or provide opportunities for service, or structural church programs and logistics. However, if we are really interested in a setting that plans for participation for more people, we could make "chicken soup." A "chicken soup" form of religious education, or opportunities for service, or structural church programs and logistics.

As Diane stated, the "chicken soup" approach implies "everybody's in." We choose to have chicken soup over roasted chicken because we know that not everyone will be able to partake if we have roasted chicken. We as a group, therefore, choose to forgo the roasted for the soup.

McNair

The 99 and the 1

I now have posted two blog entries where a person with disability and his/her parent were asked to leave a church service (and in the one case be arrested if they came back).
See June 21, 2007 and May 19, 2008.

I was sharing the story of the young man with autism and the restraining order with a colleague and friend, Dr. Danny Blair, and he responded that it is the 99 and 1 story. You remember it, from Matthew 18:12-14. In case you don't it says...

10"See that you do not look down on one of these little ones. For I tell you that their angels in heaven always see the face of my Father in heaven.

12"What do you think? If a man owns a hundred sheep, and one of them wanders
away, will he not leave the ninety-nine on the hills and go to look for the one
that wandered off? 13And if he finds it, I tell you the truth, he is happier
about that one sheep than about the ninety-nine that did not wander off. 14In
the same way your Father in heaven is not willing that any of these little ones
should be lost.

So the example is to leave the "ninety and nine" to go after the one. Well what if the lost one, is really lost, like lost in autism, a disability that largely is a language disability (have you ever been in a setting where you can't speak a language that everyone else is speaking and even have difficulty communicating because you don't understand even the gestures people are using around you...if you have, you will know what it is to feel lost), lost in exclusion and lost in social isolation and perhaps lost spiritually as well. So you come to a church whose God has given the example of leaving the 99 for the lost one, and if you are able to understand the meaning of Matthew 18, you might expect that you would be welcomed.

But instead, perhaps you are asked to leave, or even arrested "for God's sake" (I choose my words carefully) if you attempt to not be lost. You have to wonder if that group has ever read the Bible they claim to represent.

As I have said elsewhere in this blog, I would love to have a person with disabilities evidencing some form of inappropriate social skill, like talking out, or standing up and sitting down, or making a noise, and hearing the pastor to say, "In the spirit of Matthew 18, lets see if we can tolerate, can live with this distraction and in a spirit of love continue on with our service."

As a person who played a lot of basketball, I have always been surprised at people who golf. When I was at the free throw line, I heard every comment possible screamed at me and people deliberately trying to distract me so I would make a mistake and miss the shot. But then there is golf where if you make a sound, even the people around you will shush you. Imagine people deliberately trying to distract a golfer? Both athletes are doing something that requires concentration, however, one has to do it with the roar of a hostile crowd. My point is not that we should heckle our pastor or any other teacher as she/he teaches. My point is that we have the ability to perform under a variety of conditions, and absolute silence is simply a preference it is not a necessity as a condition. I mean for goodness sake, visit an African-American church. We once had a black pastor speak at our church, and he made the comment something to the effect, "Speak up every so often so I know that you are listening" because everyone sat in silence like you are supposed to in most predominantly white churches. Great comment!

The presence of noise at a church service is a cultural thing, and cultural things can be changed, and at times should be changed in particular if they result in people being excluded. I can change the culture of my church, it is not a God ordained program for people to sit in silence, largely motionless for 40 minutes. We can change if we want to. So if people with autism or any other disability cannot fit our structures, our structures can change. And in a Matthew 18 kind of way, we can leave the ninety and nine behind and go for the one who is "lost," however he may be lost, be it socially, communicatively or spiritually.

What could possibly have been the point of Jesus telling the story of the ninety and nine and the one, if not to impress upon us the importance of the lost one? "...your Father in heaven is not willing that any of these little ones should be lost."

Are you? And if you are, what are you willing to do to see they, and their families will not be lost?
McNair
(fcbu)

The ultimate in legal rejection

Sometimes I post things on this blog and people don't believe me. "It can't be as bad as you suggest" they sometimes say. It is always my prayer that I am wrong, that there is much more going on than meets the eye. But, for example, if there are 100 churches in the area of the country where I live (the Inland Empire of Southern California) who are working to reach out and include people with disabilities, then that means that only 10-12% of churches in my region of the country are reaching out to people with disabilities.

At times, we are also doing just the opposite, and at times the ridiculous nature of what we are doing is hit by the light of day. Why would the story about a child with autism's relationship with a local church be noteworthy? Was it because the church had dramatically changed the way they do things such that such individuals could be involved? Could it be that special programs were developed so that children with autism could be involved at the church? Those stories could be written, but all it takes is one of the following stories to short circuit the wonderful work of other churches.

The following is in reference to an article is by Terry Gruca, a reporter at wcco.com. In it she describes how a church took out a restraining order to prevent a 13 year old boy, who is a big guy from the description given from attending the church because he becomes violent or has loud outbursts. If such a child attends church, at least the church in the article, he is to be arrested.

As comedians sometimes say, "I couldn't make this stuff up." But this is not funny. This is tragic. It says that for some people there is NO place within the Body of Jesus Christ. If fact if you attempt to be a part of the Body of Christ, we will arrest you.

Talk about resistance to change.

This church is representing to the community that my Lord and Savior, Jesus Christ, would arrest disabled people for attempting to go to church. I wonder about the violence and loud outbursts. I mean loud outbursts are 50% of the reason why this young man would be arrested for attending church.

All I can say is God bless and God protect the mother of this man for her desire to take him to church, and her faith in God, in being unwilling to reject God in the way that what would be self-describing followers of God have rejected her.

"Sure you are critical of this situation, but what would you do, Jeff?"

Lets assume for a moment that the young man is violent and it remains to be seen what violence means in reference to a person with autism. But even so, does violence justify a person being excluded from the Body of Christ? My answer is NO. Don't expect me to have the young man working with the babies or children, however, I will create a place for potentially violent people so that they can be a part of the Body of Christ. I will not file restraining orders against them.

This is so very sad. May God forgive his church for such acts.

McNair

Joni speaks at Cal Baptist graduation/Disability studies MA

California Baptist University was honored this past week by having Joni Eareckson-Tada as the speaker for the graduate commencement. Of course she was wonderful. She has the ability to speak in a deceptively friendly, almost folksy kind of way. However, her insights are deep, her biblical knowledge broad and she challenges her audience to live the Christian life as it was meant to be lived.

She was given an honorary doctorate degree by Cal Baptist (her 5th I believe) and she was gracious and grateful. Afterwards I had the chance to speak with her a bit and she was excited and honored.

One of the reasons she consented to be at Cal Baptist, I believe, has been the developing relationship between Joni and Friends and Cal Baptist in the development of an entirely online MA degree in Disability Studies. Joni was particularly interested in coursework related to disability ministry and pastoral counseling as it related to persons with disabilities. Of course her writing will be a staple in those and other classes and we were delighted to receive her input in the design of those classes. She actually began her remarks by telling those in attendance about the new degree which if not the first of its kind, is one of the few of its kind. We were honored to receive her endorsement. We are still awaiting WASC approval, but are hopeful we will receive it in the next month or so.

The MA degree in Disability Studies at California Baptist University will be offered entirely online. Students will be able to specialize in areas of leadership in disability (including understanding leadership development of leaders experiencing disability), disability policy study, and disability ministry, including studying Christian perspectives on disability.

As a part of the relationship with Joni and Friends, we hope to afford students opportunities for internships and other opportunities. Because Joni and Friends is an international organization, opportunities will be available internationally. Because the MA is online, students will be able complete the degree from just about anywhere in the world where they have decent internet access.

I am personally excited about the opportunities this degree offers for people around the world. Should you desire more information, please contact me, Jeff McNair at jmcnair@calbaptist.edu
With accreditation, we will launch our first cohort with the Fall semester of 2008. That will be a historic first cohort!

Please keep us in your prayers over the next days and weeks as we move through accreditation and program planning.

McNair

A spritual disconnect

Rec'd this link from a student of mine, Geoff. http://www.ragamuffinsoul.com/?p=4757
The link depicts a man holding up his adult son with cerebral palsy while they are worshipping together. Check it out...you will have to scroll down the page a bit.

After the picture and the brief story, there are many comments. Listen to a few of them...

• what an awesome example of what it really is all about.
• beautiful… Jesus hands and feet
• THIS this is worship.
• I’m humbled.
• Your post really touched my heart. May we all take lessons from Matt and Jefferson
• True worship sacrifice! Amazing! Thanks for hitting us over the head again.
• Wow. That is beautiful.
• speechless…
• Amazing… Grace… Compassion… Authenticity…
• Unreal man. Completely amazing.
• absolutely beautiful.
• i think the entire Church can learn true authenticity from this picture.
• … tears i my eyes …
• This is the best thing i’ve ever seen. this is the best thing I’ve ever seen. this is the best…
• Sometimes God sends people like that along for us to wake us up
• Wow! That is precious! THAT is what it’s all about! Sacrifice - Worship - Praise - Hope! Yes. And so the question is almost.Was he real?Was he an angel?

There is a disconnect here for me as I see the picture and read the comments. Yes it is wonderful that a father would love his son and assist him to participate in worship. But there are thousands of people who have no "father" to assist them in worship. The comments almost feel like posing sometimes because if people really felt it was so wonderful, why wouldn't they do it as well? The comments should read, "I think the entire Church can learn true authenticity from this picture and I am going to find a disabled person that I can help too." or "This is the best thing I have ever seen and I am going to be a part of it by helping a disabled person." or "THIS this is worship and I want to be a part of facilitating worship for someone else." Is it only if you have a son with a disability that you facilitate a worship experience for someone? Would you ever facilitate worship for someone with a disability if you didn't have that person as a son or daughter?

If we are "Real" we will not just recognize the beauty of the situation, we will be a part of the beauty. If I tell you that your service to the poor is beautiful but never help with my giving or my time, I am a poser. If I am "Real" I will do something.

Another side of me that is disconnected is that a man assists his son who is disabled at at church and this is amazing. Why is it amazing rather than commonplace? It would be commonplace if it is happening all the time. Is it amazing that a father is helping his son? No, fathers help their sons all the time. I am confident that the father himself would say it is no big deal and in many ways, he is right.

Well, then...
Is it amazing because it is too infrequently observed at a church?
It is infrequent that disabled people are worshipping at church in community numbers.
Is it amazing because a disabled man's worship is being facilitated by someone else?
It is infrequent that someone assists another in worship.
Is it amazing because one man is having his worship "interrupted" in order to facilitate the worship of another?
It is infrequent that a disabled person's worship is a priority for someone else such that
worship becomes something other than an uninterruptable individual experience.
Is it amazing because worship becomes transformed into something that it typically cannot be because we have been taught that worship is something that I do by myself and if someone for whatever reason imposes himself on me (through noise, or activity, or functional disability, or whatever) he should be removed so that I can worship?
It is amazing because it is worship in a different form. It is two men who are achieving an
apparently nontraditional form of worship which entails one loving, being patient with, and
facilitating the worship of another. However, in that service, the one being served also
transforms the worship of the servant.

Probably to most people at church, the presence of a person with disability "imposing" themselves upon them, "interrupting" their worship is a cause for complaint. "How am I supposed to worship when so and so makes me have to hold him up so he can sing and dance along with everyone else?" "How am I supposed to worship in song when so and so sings and mostly is just making a loud, off tune noise?" "How am I supposed to worship during the sermon when so and so will not sit quietly and listen?" "How am I supposed to worship when so and so bothers me continuously with their inappropriate social skills?" I mean people complain if the music is not the right genre for goodness sake. You see these things are linked. It is supposedly so beautiful to see a father be imposed upon by his son and DELIGHT in that and us it as a means of service to his son. It is supposedly so beautiful that a son would not be ashamed of his need for assistance but would DELIGHT in the assistance he needs in order to participate in worship.

Lets not be posers, Christian. If service is beautiful when I see it in someone else, it is also beautiful for me. If "interrupted" worship is beautiful for someone else, because it displays love in a kinda way it is supposed to be, then I should be more open to interruption. Worship needs to adapt to the impositions of imperfect people who are socially more imperfect than I due to their disabilities. My level of imperfection is acceptable, theirs causes me to reject them.

Lets be truly "Real," Christian, and do the thing we celebrate without excuses. Lets make the beautiful, the amazing acts of love commonplace such that when we see them, we still appreciate them but we are not amazed by them because they are not the rarities that they presently are. If it is beautiful to be loving and patient with people, lets make that the mundane within the Church.

McNair

F.I.R.E.

The Foundation for Inclusive Religious Education is a group sponsored by the Catholic Church.  The goal of the foundation is that they grant

...children with special needs the remarkable opportunity to receive a Catholic education in their parish schools.  In 1996, a group of parents founded F.I.R.E. to realize a common dream for their children with special needs to attend parish schools with their siblings and neighbors.  Since F.I.R.E.'s founding, the non-profit has provided essential financial grants to schools within the Diocese of Kansas City-St. Joseph...

God bless the Kansas City - St. Joseph Diocese for their efforts in this area.  May efforts like these increase within the Catholic church, and the Christian church in general.  The figures for Christian schools offering education services for children with disabilities are dismal (for some more information, see a brief article I wrote for the NACSPED news).  We should follow the example of this diocese.

May F.I.R.E. be inundated with requests for help as other Christian schools catch their vision.

McNair

Beating each other up

So, in the past 2 months, I have been an advocate for a family with a school district that apparently has been beating up on some parents, and I am going to be an "inspirational" speaker for a different school district, encouraging teachers because the parents and their advocates have been beating up on the teachers. So like a scene out of Clint Eastwood's Fistfull of dollars I am in the midst of playing both sides (although my movie would not be a Fistfull of dollars because unlike Eastwood's character, I am not charging anything, which is not a complaint as I am happy to be an advocate and an encourager for both sides). It is all about the best services for children with disabilities.

Parents too often are placed in the position where they have to fight school districts or any other agents of the state for appropriate services. Schools have limited resources and they attempt to cut corners where they can. So if they can cut corners for your child, then they can serve another child whose has parents who are more active advocates. But I don't want them to cut corners for my child so I fight to get the services that I feel my child needs. Schools will sometimes play games with parents such that parents get tired of being pushed around, or tired of not receiving services, or tired of having their rights stepped on, so they find an advocate, or someone like me who only is interested in the best services being provided for a child. The difference is that by bringing an advocate, or someone like myself into the meetings, the school district acts differently. Even something as simple as the time alloted for the meeting changes from being brief, to as long as it takes. Services providers cannot brow beat parents because someone is in the room who knows the parents' rights. In one meeting, for example, one of the professionals on the school district's side, was pushing a particular IEP goal that the parents were not interested in. The parents tried several times to express that they were not interested in the goal, but the district kept pushing. Finally I spoke up and stated, "The parents do not want this objective so it is dead." Nothing more was said about the objective because that is the parents' right in the IEP meeting and although everyone knew it, the parents were not responding to the districts assertive position with assertions of their own. In spite of what are hopefully the best intentions, schools are villiainzed by parents because they may find that the only way they can get services is to fight. And unfortunately, the fact of the matter is that those who fight often get the best services.

On the other side of the coin are the teachers. Of course there are slackers as there in any job, but largely I believe that teachers are doing their best for their students. Some parents, however, are entirely unable to be satisfied. At times there are issues of not being able to accept their child's disability (I know of parents who want the district to work on reading for a 20+ year old who has not been able to learn to read for their entire school career), or being unreasonable about services (demanding one or more aides, or private school services, or myriad other programs that they may have heard about), or bringing in experts whose sole purpose is to make the district look foolish or to sue. These people are not helpful, because it is true that districts do not have unlimited resources. It is also true that as hard as teachers may try, they are not perfect. There are very few "perfect" classrooms for students with intellectual disabilities, for example, so it is easy to observe a classroom and find fault. Some aspects of programs are considered the most basic of best practices. I try to impress upon my student teachers the importance of instructional data to ensure teacher accountability. However, other aspects are simply opinion. But if I as a parent have an opinion because I saw something on a television program, or read some controversial book, I begin to demand this or that particular program for my child when the teacher may be feeling that there is no empirical evidence supporting a particular approach and the approach is also very expensive. There are many such approaches out there that have great zealots behind them and not a shred of research data supporting the fact that the approach does anything. But parents who may be desperate to find anything that might work with their child are sucked into promises, and then demand services at the local school.

So the educational system is such that teachers feel beat up by parents and advocates, and parents feel beat up by schools and professionals. The system is adversarial at nearly every level. It can even be adversarial between agencies, where some agencies think that they are God's gift as advocates and are quick to villianize other agencies. They become indignant should anyone make any accusations toward them, however. But being a friend of parents, I could tell you stories of unsatisfied parents and family members, and professionals who feel put upon by EVERY state agency.

But I, in response, will continue to advocate for parents for the best services for their offspring from any agency, and I will continue to encourage teachers to be the professionals they are, and to use best practices, and practice accountability.

McNair

Getting into "trouble"?

Recently I have had an interesting experience that I guess I should have expected, but didn't and have been a bit taken by surprise.  As I have mentioned elsewhere in this blog, there is a group home close by to my home that I like to visit once per week.  The people who live in the home also attend my church.  They are all adults who also experience moderate to severe intellectual disabilities.

Anyway, over the past couple of years, the lives of the group home residents have improved a bit, I would argue, as a result of their participation in church.  I mean not only do they participate in activities on Sunday morning, but they also go with both church and community groups (Rotary and high school service clubs) to ball games (major and minor league baseball, high school basketball and football that we at the church facilitate), have attended concerts and an occasional play, a yearly shopping spree, as well as going to swim parties, movie nights at church, speaking in classes for students study special education, and just generally going out for a meal now and then.  I as one of the main people facilitating these outings have gotten fingerprinted (see my entry on fingerprinting) and am an approved person to be with the folks. 

Anyway, the group home has received increased scrutiny because of the small move toward regular lives that the people are experiencing.  Social workers are concerned that the residents are interacting with people at church who are not finger printed.  They are concerned that they are going to ball games with people who are not finger printed.  They are concerned that when they come to address my classes, addresses that have proved to be truly life changing for the students whom they address (I will have to share about that in another entry sometime), that in actuality they are being "put on display" in some form of disparaging manner, I can only assume because the regulators must think that the residents have nothing to say to a class of university students.

I think that they are making these assumptions and raising these concerns as people who live in group homes are supposed to live there in isolation without the presence of people from the community who might actually be interested in developing a relationship, making friends with them because that, sadly, is the experience of most people living in such a situation.  I really do understand the desire on the part of professionals to protect people from victimization.  But I also recognize that no one can be totally protected, and that one just has to use his best judgement in looking at relationships with community members.  Clearly, the community has been sensitized to the horrible behavior of what is comparatively a handful of religious people, however, one can be wise without being ridiculous.  The fact that the vast majority of interactions between children and priests, for example, have been edifying and a blessing, does not diminish the fact that a small group of people are evil, but it does point to the fact that the vast majority of interactions are edifying and a blessing.  It has also changed the manner in which all people interact in religious settings.  For example, I myself when out in the community with friends with intellectual disabilities, will be careful to avoid being in a car alone with a disabled woman, even if just driving her home.  I will always attempt to take women home first and then the men second.  That is just common sense.

It is also interesting that professionals in disability related services will speak of their desire for things like community integration, and normalization , and friendship.  However, it is interesting that when it actually occurs, they don't know what to do with it, and rather than allowing something natural to occur, something like friendship, they will attempt to regulate it, and in effect destroy it.  In my own situation, I can already see the group home owner pulling back a bit, and who can blame her?  Why should she risk getting into trouble with regulating agencies who will come the home looking for something wrong, and expressing a judgmental attitude at the positive things that might be happening?  I am sure her thinking is, "If I just keep the people in the house and not give them access to the outside world, I would be much better off."  No doubt that is the reason for the punishing attitude of the social workers and other regulating agencies as well.  "Quit doing the community integration stuff.  You need to be regulated by us if you are going to have your residents develop friendships.  How dare you do something apart from our regulation."  One can only assume that they would then be happy if the group home residents left daily for their adult day care setting where they are often treated as children, and then just come home and stay in the house.  Case workers will decry the fact that group home owners will run to the store for a gallon of milk, take one of the residents and count that as one of the required monthly outings.  But when people are engaged in real outings with real friends, I guess their "handlers" are considered trouble makers.

This is another barrier that churches must be prepared to face in attempting to do disability ministry. We have decades of uncaring attitudes of churches and protectionist attitudes by professionals.  As we, the church, begin to reach out to those we have ignored, we must expect to find resistance on the part of the protectionists, because their structures for the way they do their services were designed without a group like the church taking an interest in group home clients to the point of wanting they to be participating members.  So although they talk a good integration game, in reality they are a part of the problem, by their own design.

But the problem of the woman who runs the group home that I visit, is that she got into the group home business because she loves and wants to serve adults with intellectual disabilities.  She wants the very best for them, in spite of the way in which the agencies would regulate or intimidate and try to scare her.  Not only does she recognize that her residents are people who want to have a full life, she also recognizes that they are people who desire to express the spiritual side of their lives.

So, apparently integration of adults with intellectual disabilities into the community is a fight with the church to want to integrate them and a fight with the state to allow the integration to occur.  Apparently the church is not the only one who claims to stand for one thing and do something else.  The state can and apparently is hypocritical in its approach to community integration, saying they want it, but regulating and punishing and frustrating efforts at integration.

McNair

"People with mental retardation & sexual abuse"

The following is from an article by Leigh Ann Reynolds entitled, "People with mental retardation & sexual abuse."

• >90% of people with developmental disabilities will experience sexual abuse at some point in their lives
• 49% will experience 10 or more abusive incidents
• 36-68% of girls and 16-30% of boys will be sexually abused before their 18th birday
• 15,000-19,000 people with developmental disabilities are raped each year in the United States
• 97-99% of abusers are known and trusted by the victim
• 32% of abusers were family members or acquaintances
• 44% had a relationship with the victim specifically related to the person's disaiblity (such as residential care staff, transportation providers and personal care attendants)
• Abusers typically abuse as many as 70 people before ever getting caught

The article defines sexual abuse fairly concisely such that the reader knows what the author is speaking about.

There are a variety of lessons from these statistics, not the least of which is that people who are facilitating disability ministry must be cognizant of interactions between persons with developmental/intellectual disabilities and the general public. We should be aware of situations at the church and other community settings as well as having a presence in the group homes and living situations of persons with disabilities. The article also lists physical signs, behavioral signs and circumstantial signs that people may look for. The article is concluded with the statement, "You do not need proof to file a report."

The church has a protective function to serve in the lives of persons with severe disabilities, however, we can only serve that function if we are involved in the lives of persons with severe disabilities. We need to be aware of the signs of abuse and not be afraid to ask questions of individuals with disabilities and their care providers should we have a concern. Ultimately we can report to the police if we believe something untoward is occuring in the life of a person with a severe disability.

McNair
(fcbu)

More on stigma

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

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

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

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

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

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

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

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

McNair
(fcbu)

Stigma

When a person with a disability enters a room, people will tend to notice the differences about that person. Perhaps it is his facial characteristics as with people with down's sydrome. Perhaps it is the fact that she uses a wheelchair for mobility. Perhaps it is some scar from an operation. Perhaps it is some other type of equipment that the individual uses to communicate or move safely, or breathe. These things stigmatize a person. That is, they cause those in the environment to think in a particular manner about the person who has the characteristic. If I show up in a wheelchair, people in the enviornment have their minds flooded with every idea, every notion they may have about who a person is who uses a wheel chair, be those notions correct or not. If a person uses a wheelchair, I cannot entirely help the fact that the enviornment will stigmatize them in particular ways. But I can do things that will help to remove the stigma or I can do things that will perhaps exacerbate the stigma. Let me give you some examples.

People with intellectual disabilities enjoy life as it is presented to them. Now I can present things to them via my disability ministry at church which gives the impression that disabled adults are really children. I can have them coloring pictures even though they are 50 years old. I can have them singing "Jesus loves the little children" even though they are in their 20's and 30's. I can communicate to those around the person with the disability that I believe that that person is not really an adult, she is really a child and because I am the expert in my church as the disability ministry guy, people will believe me and treat adults as children. Will the persons with disabilities enjoy coloring pictures and singing children's songs? Many will. However, I do not have them coloring pictures at church or singing children's songs because I know how this will stigmatize them towards others in the environment resulting in them being treated as children when they are not children. Instead, we will sit around tables like any other adult class at the church, sing choruses although they may be simple, which are typically sung in the church. If you walk into our class you feel like you are in a class for adults, not in a children's Sunday school class.

I think too many ministries for adults with cognitive disabilities convey the message through the activities that they do with those they are attempting to serve that these adults are children which is a great disservice to those to whom we claim to be ministering. Part of this problem is our knowledge focus in the Christian church. Sunday school is too often all about imparting knowledge, so if a person is cognitively disabled, then (it is thought) they need children's knowledge, delivered in a manner children would accept or be comfortable with. I would argue that knowledge should not be the primary focus of the Sunday school (even though it is called school) but it should rather be faith development. Faith development and knowledge development are two very different things. Is there knowledge associated with faith development? Of course there is. But I can become confused and end up just providing knowledge without worrying about faith development. Programs stigmatize adults with cognitive disabilities when they are exclusively knowledge based, partly because the accumulation or understanding of knowledge may be the weakest point for the person with intellectual disabilities.

However, faith development implies some knowledge, but also a lot of behavior. I can teach behaviors to persons with intellectual disabilities and it will likely result in faith development. For example, I can teach these people how to pray and then encourage them to pray daily, pray without ceasing, pray in faith. Will conversation with God via prayer increase their faith. I believe it will. I can teach them to fill their lives with uplifting media like Christian music or Christian video. Will that help them to grow in faith? I believe it will. I can also teach service and caring as a way of being like Jesus. In using these approaches, I am using the same approaches that those without disabilities should arguably use to grow their faith as well: doing something rather than just passively listening to something. As a result I am growing their faith in a manner that is not stigmatizing them by treating them as if they were children. I am also recognizing the fallacy of a overly intellectualized presentation of the faith that is too knowledge based for everyone in church, not just those with intellectual disabilities.

McNair
(fcbu)

A lesson from Pagan Christianity

I've just finished reading a book that was recommended to me by a friend called Pagan Christianity by Viola and Barna.  I have no doubt that it is considered a very controversial book, in fact it begins with the publishing company's statement that it doesn't necessarily represent their position on the issues it discusses.  But in a nutshell, it takes many of the most foundational practices of the Christian church and traces their roots.  Where did the practices come from and are they based on the Bible or were those practices adopted from the world.

I was intrigued by the book because I have long felt that there are many church practices, church structures which are an impediment to the full participation of persons with various disabilities.  I personally cannot believe that a church based exclusively on Christian principles would be an exclusionary church, so I have wondered where many of our exclusionary practices have come from.

But after reading Pagan Christianity, it struck me that in disability ministry, we may be beginning to do or are actually doing exactly what Viola and Barna claim the church has done in the past.  That is, build church structures (meaning church practices) that are based upon or mimic secular practices.  For example, Sunday school looks surprisingly like regular school with just a different topic of study.  The focus is just as knowledge based as the public schools are.  You could further look at supposedly, "Christian schools" where people with disabilities are excluded and recognize that they may be Christian in some ways, but are also very far from Christian in other ways.  In each of these examples, the Christian church has copied the way the world does things in both cases to our detriment.

But back to disability ministry.  One of the first steps, it seems in disability ministry, is to do inclusion programs.  Well, where did the idea of inclusive programs in schools come from?  Clearly not from the Christian church.  It was a development of the secular world as a way to integrate children with disabilities into the regular classroom.  The secular world has found this has not entirely worked as a strategy because public school curriculum is so knowledge based.  However, we in the Christian world, copy the knowledge focus of schools, then try to integrate children with disabilities into our knowledge based Sunday schools, and find we have difficulty in the process.  The end result is that the children with disabilities are excluded, or at best just tolerated and treated as if we are doing them a favor by allowing them to participate.

But I would argue that the focus of Sunday school borrowed from the public schools is probably pretty much wrong, so the starting point takes us in the wrong direction.  I have visited many classrooms where adults with severe intellectual disabilities sit while they are read a lesson from a teacher.  Why do we do that?  What do we think we are doing when we do that?  If we want to engage people with intellectual disabilities, then lets think about how people with intellectual disabilities are engaged.  They have intellectual disabilities.  They are not going to be engaged by sitting in a classroom and having dry knowledge dropped on them.  They have intellectual disabilities.  They are not going to make applications to their lives from content about Noah's ark or the 6 day creation of the Earth.  They have intellectual disabilities.   If we were to copy the practices of the world, do you know what the most important skills are to be taught to adults with intellectual disabilities?  They are social skills. NCLB has gotten us back into teaching content in the public schools to persons with intellectual disabilities, but by and large even the public schools have moved away from a knowledge based, content oriented approach to education for persons with intellectual disabilities.  But we in the Christian church continue to copy programs that are basically irrelevant in their knowledge focus.  Must I repeat again that the folks have intellectual disabilities.  They are not going to get it.  Then we borrow the inclusion practices of the public schools which again are probably not the best way to integrate someone (take for example people with intellectual disabilities...sure, lets integrate them at their point of greatest weakness) and we wonder at the problems we face.

As the Christian church, we can pretty much do anything in terms of faith development for our children.  We can also pretty much also do anything in terms of working to include persons with disabilities in the structures of the church.  So what do we do?  We mimic the public schools.  And as I have argued elsewhere in this blog, if our practices are exclusionary of persons with disabilities, then most likely our practices are wrong, perhaps not even Biblical in their roots.

So as we look to do faith development in children and in adults, we might consider developing models that go beyond the lazy copying of secular practices.  Is the only difference between Sunday school and public school that I can pray in Sunday school?  Are the goals just the same with only the content being different?  Or could there be alternative methods leading to a qualitatively different outcome called faith development in our students, because we are working to develop something far different than just knowledge.

Is our goal for ministry to persons with disabilities no different than the goals of the public schools?  Much of the data on the outcomes of inclusion in the public schools are not that great.  People know each other's names and not too much past that.  Is the goal for our teachers to be like the teachers in the public schools? Or would we prefer to see involvement in the lives of persons with disabilities as not just a job, but more of a lifestyle?  Do not blindly look at the secular world, Christian, and just do what they are doing.  Think Biblically.  The secular world is doing some good things.  But we have the potential to do greater, powerful, world changing, Spirit inspired things if we will seek God's guidance to do them.

McNair

Alarmed by numbers

I have been preparing a portion of a class for a certificate program that is being offered by the Joni and Friends organization. Should be good. I am talking about "intro to disability" Steve Bundy (their Christian Institute on Disability director) is talking about "the church and disability" and Kathy McReynolds (the CID policy person) is teaching about "bioethics and disability". Taken together is should be interesting. If you are interested in the certificate program, you should go to the Joni and Friends website to find out more.

Anyway, in the process of preparing, I have been looking through some historical issues related to disability in general, in the US. It is interesting that around the turn of the century, the early 1900's, that people became alarmed at what appeared to be a sudden rise in the numbers of people with disabilities. This apparent sudden rise was at least in part due to the fact that IQ tests had just been developed and used on large groups of people, institutions had been started promising rehabilitation and even cures for persons with severe disabilities so that people were coming forward in large numbers to receive services, as well as the urbanization of American society, such that people who had been doing fine in a rural setting, were not faring as well in an urban setting. Anyway, those and other factors, led to an apparent sudden rise in the number of people with disabilities who were coming to the attention of the general public. It was not a real rise in the actual numbers of people with disabilities, it was just that those who had been hidden in the past were coming out of the shadows and being seen for the first time.

As I think through this historical reaction to people with disabilities, I wonder whether there might be a similar reaction within the church. That is, people with various disabilities have largely been excluded from the church, or the church has not made the effort to reach out to them. Imagine if the numbers of people with disabilities in the community suddenly came forward to take their place in the average local church. If a church of 1,000 suddenly had 90 people with severe disabilities, and 200 people with disabilities overall, would they react thinking that either they were singled out as the place where people with disabilities choose to go, or would they think there was a sudden epidemic in their area in disability as indicated by the numbers who were coming to their church. I doubt they would recognize the fact that 9% of our population has severe disabilities, and the fact that 20% overall of our population have a disability is just a reflection of US census figures for our country.

I cannot tell you how many times I have heard from people, "I just didn't know" when told about people with disabilities in the community. "I didn't know they were there." "I never thought about it."

So imagine if those who have never thought or didn't know were suddenly faced with a church of which 20% of the congregation was diabled in some way. How might they react? I suspect they would in fact react, and probably in a negative way.

One of the things we who are in the know a bit about disability can start to do, is to share with congregational leaders, to share with people we know, to share with anyone who will listen at church that 20% of our population is disabled, and 9% are severely disabled in order to prepare them for the coming of people with disabilities to church. In this way when they do, LORD WILLING, arrive, we will not be alarmed, but will rather be thinking, we knew they would be here eventually. We had heard that they were out there, but just hadn't come to church yet.

McNair
(fcbu)

Missing love

I just completed Resurrecting the person by John Swinton which I would highly recommend, particularly if you are interested in ministry to persons with mental illness. Many of the issues apply to ministry to anyone, whether or not they experience disability.

In the final chapter of the book, Swinton says, "Perhaps the strangest thing about this process of liberation is its ordinariness" (p. 207). The process of liberation is the change that needs to come over the church such that it will embrace persons with mental illness (in this case) but also persons with various differences in general. The ordinariness is in no way ordinary largely because it is not typically present. However, when you come to understand what the basic changes need to be, you find that they are quite ordinary.

When distilled down, the change that needs to occur is that we need to love our neighbor. It occurred to me that when we have "difficult" people in our midst, like those with severe mental illness, our lack of love is highlighted, it is felt like putting your finger in a wound. However, I wonder if the fact that we are missing love for the difficult group is evidence only that we lack love for those people, or is it an indication of a greater lack of love for all people, unless they are easy. Easy to love people are those who cross my path, tell me everything is fine, make no demands on me, ask me how I am doing, shake my hand or pat me on the back and then leave me alone. Those are the kinds of people I like to populate my world with. They are the easy to love. The other end of the spectrum are those who have poor social skills, or want my money, or want my time, or cause me to have to do things like help them in the bathroom, or wipe their snotty nose, or call me all the time, or disrupt my meetings and so on and so on. They are hard to love. I don't like to populate my life with those kinds of people because they don't leave me alone. Too often, I think, the church is populated with the former and not the latter.

But it is pretty obvious who of the two above will grow me as a person, will grow me as a Christian. I am not called as a Christian to social niceties, independence and being left alone. I am called to messy relationships with difficult people who are unsatisfied with my helping, no matter what I do. I do not learn love through unfettered independence. I learn love through messy relationships, and difficult people, and those who do not praise me for my minimalist love efforts.

However, as I look at the church, it appears to be designed around and largely populated by people who want to be independent, and grow in their independence. I don't want to be a part of the vine, in a relying on others sense, I want to be a branch alone. I don't want to be a part of the body, in a dependency sense, I want to be a foot alone. As I am successful in my independence, I will move further and further away from love. The ideal of love is replaced by the ideal of independence. Those who are dependent are also disdained because of the the demands they make.

However, what might 1 Corinthians 12:9 mean? Paul asks God to remove his thorn, his disability.

And He has said to me, "My grace is sufficient for you, for power is
perfected in weakness." Most gladly, therefore, I will rather boast about my
weaknesses, so that the power of Christ may dwell in me.

How is this premise acted out in churches? The power of Christ dwells in Paul through his weakness. This is something to try flesh out in another blog entry, however, could the reverse be true? If I boast about my strength, could it be that the power of Christ does not dwell in me? If I am independent, if I am unconnected with others through my own and their need, does the power of Christ not dwell in me? Our independence, our disconnectedness from those who would potentially sap our strength for love and service is a symptom of a disease that has permeated the church. "But now faith, hope, love, abide these three; but the greatest of these is love" (1 Corinthians 13:13). Are we missing the greatest thing? Are we missing love?

McNair

Evaluation of "Local church support to individuals with developmental disabilities"

The following is an essay that my daughter developed for work in one of her pre-law classes at Seattle Pacific University. She does a great job identifying some of the most relevant issues from an article I wrote several years back. She also chides me for not going far enough with the article and its recommendations. I provide it here as a good synopsis, and a logical presentation of the issues.

Essay evaluating “Local Church Support to Individuals with Developmental Disabilities”
By: Jeff McNair, Ph. D (Published in: Education and Training in Mental Retardation and Developmental Disabilities, 32(4), 304-312)

By Amy McNair

In his article, Dr. McNair argues that the church is an untapped resource as a network for services and support to people living with disabilities. He describes what qualifies someone as an adult (employment, independent living, etc) and how individuals receive dignity through that position, then goes on to explain the difference between state and natural support for people. After describing the role the local church can potentially play in peoples lives, he argues that church support is the only logical choice that is able to provide all the services people with disabilities need; and it is currently not living up to its potential. The church has a responsibility to people in the community, and through fostering this kind of relationship; the church itself will change for the better. Instead of using state-funded programs that foster dependence, the church can empower people with disabilities to live more independent lives.

The most logical and sound argument Dr. McNair uses in his article follows the modus tollens format as follows:
1. If the church wants to obey its’ calling and offer services to everyone in the community, then it can include people with disabilities.
2. The church does not include people with disabilities.
3. Therefore, the church is not obeying its calling to include and offer services to everyone in the community.

This is a strong argument, particularly since the words church and not obeying should probably not be in the same sentence; except not all churches want to offer services to everyone. They often pick and choose the groups they would like to serve. Dr. McNair’s point is that there is a learned helplessness that develops when it is the State that a person must rely upon. He uses the example of Scrooge and how he just gave his money away to the State, or just assumed the services they offered were working, without actually having to do anything and without really helping anyone. The people receiving services depend upon them too much, and others able to help sit back scratching their heads, unable to figure out how they can help and if it would even make a difference. So the argument made in this article is that people, specifically within a church setting and faith community, can do something to help simply by offering services that are already offered to other members of the community through the church.

A frequent argument against this idea of inclusion of people with disabilities is the cost of such inclusion in a church. The answer Dr. McNair gives is that a church is free to spend its resources however it pleases and on whomever it wants. The only requirement would be meeting the standards the local church would impose. Other people groups (high schoolers, elderly people, singles) can pick from varying ministries at different churches within a single community, so why is it that in most places there is not that same variety of choice for people with disabilities?

The article logically continues into what areas that the Church could provide assistance. Things like helping to find employment, offering medical services, transportation, financial support, social support, and education all are potential ways the Church could express their faith and support to people with disabilities through service. By using the gifts church members already have, there is untapped potential for hair stylists, physicians, mechanics, cooks and all other sorts of people to help contribute in place of a state program in the lives of adults with disabilities. As Dr. McNair argues, “when an individual becomes a member of a church, they immediately inherit an extensive network.” Only the local church has the ability to combine all the networks and help people. He continues on and explains that “via church membership, people truly become potentially connected with extensive networks which once again are trying to serve God, an integral part of which is serving their fellow man.”

This article has sound arguments and reaches logical conclusions. The main alternate view is exclusion of people with disabilities because it is too difficult or just not something churches want to do at this time. People also argue that it is too expensive for the church to become a network for certain groups and that it will be more of a trial then it is worth. The question is: when will it be the right time? When can the church understand that there is an entire group of people (20% of the population has some sort of disability with 9% having severe disabilities) of whom 90% is unchurched? If this was a minority group, there would be an international uproar within many faith communities, but on the issues surrounding disability, the church as a whole is largely silent.

The main argument then becomes whether or not this article goes far enough. It seems it could be argued that the churches entire perspective on ministry up to this point has been wrong if it has not included people with disabilities to this level. There should never be a question of whether a child with severe disabilities is welcome in a Sunday School class, whether a woman in a wheelchair will have an accessible way to enter a church, or whether a man with severe mental retardation will be welcomed as a valued member of a congregation on any given Sunday. The church of any faith is being disobedient, deliberate or not, by both not reaching out to these community members and inviting them to services in the first place, and not including them when they arrive on their doorsteps. There will eventually be consequences. It has been said that the opposite of love is not hate, but apathy. The church has been apathetic towards people with disabilities, and that needs to change. This is what needs to be argued. We cannot expect the church to be an agent facilitating a support network if they do not support people with disabilities to begin with.

Sally's memorial service

To follow up on my last entry, we held a memorial service for Sally at our Light and Power class. Circumstances prohibited us from doing this on the two occasions over the past 15 years when two other members of our class died. The first had left the class, had been very ill, and lived at home. We literally didn't know until several months after her death that she had died as for some reason her family cut off contact with us. Then the second person was a man and his family requested that we not tell the group that he had died, but that he had moved. So we honored their requests for a while, but then the other men that he had lived with started reporting that he had died, but once again that was about 6 months later. So Sally was the first person in our group for whom we had the privilege of having a memorial service.

The memorial service went very well, I thought. There was singing and tears, as there should be when a life is remembered. There was discussion of the hope of our salvation, and that Sally was now in heaven with the Lord. But the most poignant moment, to me, was when her room mate read the 23rd Psalm to the class. I was blessed to be able to stand with her as she read, and help her with unfamiliar words. She had the Psalm largely memorized which can become confusing when you are are trying to read something. Anyway, she did beautifully. She also closed the meeting with a prayer.

One of the most interesting things, however, was that the group home owners were there. They are a wonderful Christian couple, who are very loving towards the residents. The gal owner, related a story of how there had been many licensing people around, obviously checking to make sure there was nothing wrong about the death. They noticed that there were flowers and a nice sympathy card that had been sent to the home. In fact there was a bouquet for the home, and a bouquet for Sally's room mate. The licensing people were surprised and shocked that someone from the community had not only noticed Sally's death, but that they had responded so kindly by sending flowers. I must tell you that I had nothing to do with the sending of the flowers, but was very proud of my church for sending them. What a great example, a great witness to those licensing people. But it also made me sad to think of how many people like Sally live in group homes where they have no community interaction with others. The group home owner made the comment about how important our group was to Sally because we were here friends, and everyone should have friends in their lives. Such a small thing, but such a huge thing in terms of the quality of a person's life. People in group homes are so isolated. But they are people who would love to have friends as much as anyone loves to have friends. Too often, however, the church has ignored those people.

You know the average person in a group home is someone who would come to church if invited. They would be responsive to the Gospel message. With simple acts of kindness, we could literally change their lives. But we don't do it. We don't try to reach out to people in group homes as the Christian church. As a result they live segregated lives with few friends and limited opportunities for social integration. In the end they die and no one other than licensing even notices. It was such a blessing today to know that the passing of a woman with severe cognitive disabilities was noted by a room full of perhaps 80 people who largely gathered to remember a life. They were also genuinely sad to see her go. It is a small thing, but once again it is an important thing.

McNair

On the death of a friend

A friend of mine, a woman who lived her life with severe intellectual disabilities died this week.  She wasn't particularly old, maybe in her 40's.  She lived in a group home with other adults with similar disabilities.  Her roommate is a wonderful gal, who saw her relationship with her roommate as a ministry.  You see, she herself was cared for by a woman with down's syndrome in the institution in which she lived as a child, and now feels it is her responsibility to care for people with down's syndrome.  She has now had two roommates over the last 16 years who were women with down's syndrome, very similar in personality that she has cared for and has ministered to.

Anyway, the woman who died, wasn't particularly ill, she had had the cough that has been going around Southern California this year, but otherwise was not sickly.  The men who also lived at her group home told me as I walked in the door last night, "Pray for Sally.  She in hospital.  Pray for Sally."  They then went on to tell me how a fire truck had come and took her away to the hospital on a bed.  I knew that she had died, but they didn't as of yet.

But Sally (not her real name) was a sweet woman.  I think I will always remember her as being the gentlest person I have ever met.  When she would touch your hand, or touch your face, her touch was so caring, so so gentle.  She used few words, and was at times distracted by things around her.  She would interact with you somewhat when you got her attention.  She would respond "yes" at times to questions with a kind of upswinging inflection to her voice.  She would attempt to communicate at times, and we were always delighted when we understood what she was trying to communicate.  When I would visit the group home, I would bring Coke and ice cream cones.  She enjoyed both, and although she would occasionally need encouragement to eat her dinner, she never needed encouragement to eat her ice cream cone.  As I was thinking about her passing, it gave me great joy to think that I had the privilege of doing something for her that she really enjoyed.  I may have given her more ice cream cones than any one else in the waning years of her life, and may have given her her last ice cream cone.  It makes me smile to think of that.  She had the ability to bring out the best in people around her.  As I have already said, her gentleness caused others around her to be gentle with her and to be patient with her.  Her gentle voice caused people around her to be kind and gentle with their own voices.  I wish I had the ability to recruit that kind of response from people.

Her "working life" was spent going to a day program, largely adult day care, but that type of program maximized her abilities vocationally.  I think it took much to get her to move from place to place.

She was loved by her roommate, by the group home caretakers, who both cried at her passing and by the men at the group home who were so intent on her being prayed for while she was in the hospital.  I too will remember her the rest of my life.

Because her group home parents are limited in their ability to speak English, they asked me if I would tell the men in the group home about the fact that she died.  I must say that I have never had the experience of sharing the death of a person with a group of intellectually disabled adults before.  I asked them to all sit down together on a couple of couches and I sat on the floor in front of them.  

"Do you remember that you told me that the fire truck came, and they took Sally to the hospital on the bed?"  

"Yes" they all replied and recanted the excitement of the fire men and the fire trucks, and said once again, "You need to pray for Sally, she in hospital."  

"Well, Sally was very sick when she went to the hospital and while she was in the hospital, she died."  

"She died?" 

"Yes, Sally died in the hospital.  That means that we won't ever see Sally again and that makes me sad.  But we know that Sally is in heaven with Jesus."

There was silence for a moment.

"So we will be sad for a while, but we can be happy because we know that Sally is in heaven with Jesus."

"Sally is in heaven" several of the men repeated.

One of the men said, "Will I die?"

"Yes, you will die, and I will die, and Kathi (my wife who they know) will die, and Fred (the group home dad) will die.  We will all die someday."

"I no die" said one of men.  "I no die, Jeff."

"Well you will die someday, and you will be with Jesus in heaven."

"I no die, Jeff."

I then led them in a prayer for Sally's family, and they stopped asking me to pray for Sally in the hospital.  It seemed they understood.

One last comment on this.  My wife Kathi noted to me today that in at least two recent situations where a close friend of one of our friends who are Christians with intellectual disabilities died, that there is immediate acceptance.  Sure they are sad, but very briefly, and they are quick to talk about their friend being with Jesus, being in heaven.  It is as if their faith is so strong, that they immediately accept the truth of what they have been told about what happens to someone who dies "in the Lord."  As 1 Thessalonians 4:13 says, "But we do not want you to be uninformed, brethren, about those who are asleep, so that you will not grieve as do the rest of those who have no hope."  My friends with intellectual disabilities appear to grieve as people with hope.  

Upon hearing about Sally's passing, her roomate commented, "She doesn't have down's syndrome anymore."  I don't know if that is true, but I know what she meant and what she meant is true.  Her future is one that is entirely unimpaired in her vision and her understanding of God.

McNair

Curse the deaf stumble the blind

Leviticus 19:14 states, 'You shall not curse a deaf man, nor place a stumbling block before the blind, but you shall revere your God; I am the LORD" (NASV). It is striking that we are warned to not do something to someone who would not be able to detect us as having done that thing to him. A deaf person cannot hear me cursing him. The blind person cannot detect me putting a stumbling block in her path. In the case of the deaf person, he would not know that anything had happened to him although those around him would realize that someone has cursed him. In the case of the blind person, she would recognize that she tripped over something and fell down, but she would not necessarily attribute her own misfortune to the actions of another person. However, in each of these cases, we know what we should do towards these individuals. If we are unsure for some reason, the passage tells us what to do. Typically, if someone makes rules such as these, it is because people have cursed the deaf person or put the stumbling block in front of the blind person. It is not hard to imagine people thinking this is great sport, great fun.

I would extrapolate this message to others to whom we might do something who wouldn't realize that we were doing a bad thing to them.

There is the story of a woman who as an infant was placed into an institution. When family members came to visit others in the institution, she would ask where her family was. The staff would reply, "They are on vacation." As the story goes, the girl had a sister who found out at age 30 that she had a disabled sister living in an institution. When she visited her sister, the disabled gal asked her, "How was your vacation?"

I think there are many things like this that we as Christians, that we as the church do to people with intellectual disabilities. Like the deaf, we curse those with intellectual disabilities in ways that they don't realize we are cursing them. We exclude them, and then speak among ourselves about how their presence would be disruptive, or wouldn't allow us to do programmatic things the way we would choose to do them should they be present. We curse them in a way by treating them as children, or in not treating them as peers. Like the blind, we may put barriers in their way that they do not see or are unable to overcome. Barriers such as social skill expectations or relational expectations or knowledge based performance expectations. When they trip over these they fall down, when they need not have fallen if we had just changed our expectations.

McNair
(fcbu)

The reasons for ministry

Going along with my previous blog entry, I have been thinking lately about the reason for ministry to people, be they disabled or not, having any set of particular characteristics or not.  Is the only goal of ministry only to tell people about Jesus in hopes that they will accept Him as savior?  If so, then I feed people not because I would like to see starving people fed, I do it so they will become a Christian.  I encourage people who are discouraged, not because I would like to see people not living in depression, I do it so they will become a Christian.  I am loving to people not because I should be loving to people as a general rule, but because if I love them they will become a Christian.  In other words, love and service and encouragement are not goods in themselves for me as a Christian, they are only good if they are linked to the "other shoe dropping" that is their becoming a Christian.  That way of thinking about people bugs me.  I think it probably also really bugs those who are not Christian working to love and help people who are in the world as well.

I just cannot agree with this perspective.  If my kindness to another human being causes them to be open to my words about Jesus, that is great!  However, I will show kindness nonetheless, and I will not remove my kindness if a person spends a lifetime of rejecting Jesus.  So if I were to spend my life in a manner like Mother Theresa did, where I am working with the poorest of the poor, and perhaps saw only a handful of converts or perhaps none at all, was my life wasted?  I would argue it wasn't because of the good I did in simply alleviating human suffering.

I am always responsible for what I do in any situation.  I am hardly ever responsible for what someone else does.  If, for example, you need medication for a terrible disease and I have it and I give it to you, that was a good in and of itself.  I think in a Matthew 25 kind of way, God would celebrate that action I did.  Should you also be open to Jesus through that action on my part, even better.  I may use your willingness to listen to me as a result of giving you something that assists you in your life to share the truth with you.  However, if you say that you don't believe in Jesus, I won't stop the medication as they are both goods (giving medication, accepting Jesus).  They are not necessarily equally good goods, particularly for you (salvation is more important than healing) but they are both good.  I think the problem comes when we don't see both as "good goods" and see the one, the helping as only a reason for the other.  If that is the case, we become disingenuous in some ways.  We are obviously interested in telling people about Jesus because we want the absolute best that life has to offer for them.  But it can also make our helping appear encumbered to those who have not as yet accepted Jesus as savior.  We can appear to have a hidden motive other than just wanting to see people's lives be bettered.

At the same time, I am clear as to why I love others.  I will be quick to tell them that I love others because I want to be to them the way Jesus was and is to me.  I love them not necessarily for what it does for them, I love them because of what it does for me.  I want to love and care for other people because it helps me to grow as a loving person.  It helps me as I am trying to model my life after Jesus' example.  That is why I love.  Should my life example be endearing to them, perhaps that example will cause them to want to know who this Jesus is so that they may follow my example to the degree that it reflects Jesus.  But they will understand that I love them because I love them, just as Jesus loves me because he loves me.  I will love them whether or not they reject Jesus.  Jesus' love for me is not linked to anything endearing about me, anything special about me that people would point to saying, "You love him because he is ___."  The Bible is clear that Jesus died for us while we were still sinners.  His example is to love us, in the hopes that we will want him.  But while we are alive he will still love us independent of whether we love him.  

McNair

Ministry to people with severe intellectual disabilities

What is the goal of a ministry to adults with severe cognitive disabilities?

I was having a discussion with someone the other day, and was talking about some of the pointless things that I have seen people do in the name of religious education of persons with severe disabilities.  The person said to me, "Well those with severe disabilities in your class don't understand what you are talking about either."  I was taken aback for a moment, because of course that was a true statement.  I freely admit that persons with severe intellectual disabilities are not the primary target of any "lesson" I would teach, but that is also by my design.  I am teaching lessons currently from the book of Psalms, and I freely admit that the severely intellectually disabled in our group probably don't understand 95% of what I am talking about.  But their knowledge development, their understanding of a lesson is not something I am particularly worried about.

My primary focus for that group of people is that they can come to a place where they feel like they are a part, are a member of something.  That they come to a place they call church where they are loved.  A place where people are happy to see them.  A place where they are given good food to eat, are largely served, and can go back for seconds.  A place where they are listened to. A place where they don't need to sit quietly and just listen.  A place where they can sing.  A place where they can see friends.  A place where they can make comments, whether or not they are relevant, and be congratulated for participation.  A place where they are respected.  A place where they are treated as peers rather than the object of ministry.  A place where they are treated as adults.  A place where they are valued.

That doesn't mean that we never work toward understanding of spiritual things with that group.  But the gaining of knowledge is not much of a priority.  We do work on teaching people how to pray through modeling, and some guided practice, but even then I am not sure they have any concept of what they are doing.  They bring prayer requests and their requests are treated in the same manner as any person's requests, however, I am unsure of what they understand about prayer, for example.

So I guess I have come to understand ministry for this group of people quite differently.  I think about the stage of faith they are evidencing.  I think about how they enjoy being shown love, and how they demonstrate love for others and try to facilitate both.  The focus of the ministry is not knowledge, or the understanding of principles in the same manner that it is for the typical Sunday school class or Bible study.  A focus, by the way, that I perceive as being wrong as the predominant focus.  We, however, in our knowledge fixation at church feel that that knowledge based religious education must find its way into the severely intellectually disabled Sunday school class.  And I guess I simply do not agree.

With a mixed group like ours, we have highly educated individuals who attend (we literally have a brain surgeon) and people who are largely nonverbal and intellectually disabled.  In other words, to some extent the full Body of Christ is represented.  So we do do a lesson that will hopefully engage those who are able to understand it (which is the majority) while at the same time accepting those who may not understand the lesson as full members and full partners.  Those individuals know, for example, that they can interrupt the lesson at any time and often do.  In the same way that the lesson ministers to those who understand it as that is their cognitive level, the unconditional acceptance and ability to interrupt and receive interaction from the teacher at any time ministers to those with severe intellectual disabilities.

McNair

Ministry to peers

Yesterday, I had the privelege of having a small cadre of people with expertise in disability and disability ministry in particular visit our Light and Power group at my church. They spoke with various people at the church who work with children, and then spent an hour and a half with our adult group. Afterwards we went to lunch and had a great discussion about many issues related to disability ministry for another 2 hours!

While we were at lunch, the leader of the visiting group made the comment, "Your ministry is different. You treat the people (disabled adults) as peers." The person could have hardly made a more positive comment about what we are doing, because that is one of the major goals of our adult ministry. We want to be the same as the women's ministry, the men's ministry or any other ministry in that we are in the ministry together and are all the same.

As I have said elsewhere in this blog, I may be the teacher of the group, and one of the more educated people in the group, but I am definitely not
the most loving person in our group,
the person with the greatest faith in the group,
the person with the most patience in the group,
the person who is most interested in spiritual growth in the group,
the person who is the most free in worship in the group, and so on and so on.

And who are the people in my group? They are people with intellectual disabilities, persons with down's syndrome, persons with mental retardation.
I am confident that persons with mental retardation are the most loving members of our group.
I am confident that persons with mental retardation are those with the greatest faith in our group.
I am confident that persons with mental retardation are the most patient in the group.
I am confident that persons with mental retardation are the most free in worship in our group.

But because I am a person who is not experiencing an intellectual or other disability I and others like me might treat those who are experiencing disability as if they are not quite as good as me, not quite the same as me, not quite our peers. When we do that in the midst of ministry, it is particularly problematic. How would you, how do you feel about people in leadership over you who think that they are better than you? I don't find that a very endearing quality in people in any setting, let alone a ministry setting.

So to hear that comment from the person visiting our group was so encouraging to me. Thank God that that could be a characteristic that people would notice about our ministry.

McNair

Normality

Here is another great quote from John Swinton's book, Resurrecting the Person. He writes,

The task of a liberating church is to reveal signs and pointers to remind the
world that the way it is, is not the way it should be, and that loving "the outsider" is not an act of charity, or a function of "specialist ministries," but is, in fact, a "new" way of being human. In remembering God's actions in history and in the life, death, and resurrection of Christ, the Christian community is drawn into a new way of living and seeing the world. This way refuses to forget the pain of the oppressed, or the degradation of those who are excluded and fragmented by the types of social forces that seek to provide a picture of "normality" that bears little resemblance to the coming kingdom. Such a community embodies the fact that God has not forgotten the world (pp 125-126).

Normality bears little resemblance to the coming kingdom. Whatever that definition of normality might be. Whether it be...

normality in terms of race
(is your church all one color of people) or
normality of socio-economic status
(is your church largely upper middle class people) or
normality of intelligence
(is your church all educated people), or
normality of social skills
(is your church all people with good social skills), or
normality of reality
(is your church devoid of people with mental illness), or
normality of ability
(is your church lacking people with various disabilities).

The only normality that should be present within the church is a normality of desiring to follow Jesus Christ to the degree you are able to understand it. If that were truly our bottom line, then Christian churches might look a whole lot different then then currently do.

Normality is also reflected in our church structures. How else could you have the major weekly meeting of the church be something that is so social skill intensive. Our structures not only reflect normality they then enforce normality, in a relatively constrained way (see "Don't taze me bro" blog entry). That is, it doesn't take much in terms of difference for you to stand out in a church, it seems. And we should not embrace that, we should reject that. Openness to differences in people should be a characteristic of the Christian church. If we were what we should be, we would be so counter culture that we might risk persecution and death on a cross.

When it comes to people with various differences, various disabilities, to what degree does the church show the world how it "should be" not just reflect the way it is. It is sad that even our attempts at being what we perhaps should be, are attempts to copy the secular world (inclusion for example). We could be so much more creative, so much more giving, so much more inclusive, so much more radical in our loving approach. In reality, however, in many ways we lag behind the programs (like inclusion) that the world offers.

A bit more from Swinton,

The church is a community of friends that is charged with the task of reminding people with mental health problems that God has not forgotten them, and reminding those who would oppress them, wittingly or unwittingly, that God is with and for those whom they reject and marginalize (p. 126).

McNair
(fcbu)

An alternative structure

I have been doing some thinking about the two reasons for most churches weekly coming together for a worship service.  One main reason is the preaching from the Bible.  A second main reason is the coming together as the "Body of Christ" a time when we are all together.  At the moment, the typical church's focus is the former, preaching from the Bible.  Therefore those who would in any way interfere with that reason would be excluded.  The second reason should cause us to change our programs in such a way that all people could be included.  The coming together is the priority.  It seems on some levels that these two reasons can be mutually exclusive.  It is difficult to do traditional worship and preaching if people are present who are noisy or disruptive, and how can we be the body if not all members of the body are permitted to be present.  It seems, therefore, that there needs to be some new structure, or variation on existing structures that needs to be created.  Because the time of preaching will typically hit the majority of the church population it needn't be changed as a way of sharing the Bible.  In even the most inclusive settings, not every class that includes the teaching of the Bible would be relevant to every church member.  There would no doubt be differentiations among classes such that knowledge is accessible for all the membership.  It is important to recognize that a structure like the typical preaching part of the typical worship service will remain a significant means of facilitating growth in knowledge about the Bible.

The change that needs to occur, therefore is that there needs to be a structure in which all people could be included, and this could be called the meeting of the body, or corporate worship, or whatever would be the most meaningful.  It might precede the typical preaching, but be separated by a time during which those who do not necessarily benefit from the preaching can attend programs where they will be fed.  There is a stigmatization associated with groups of disabled adults exiting the traditional service prior to the sermon.  Perhaps the worship service could be divided into at least two parts: one is meeting as a group for the purpose of the body being together, and the other being a time of sharing from the Bible that hits most of the people in the congregation, with simultaneous other opportunities for Bible study that are designed to facilitate understanding for specific groups.

McNair