Jeff McNair

I was recently reading from a curriculum on disability. Under the heading of "Grief and Depression" was the following statement. "Acceptance does not change the reality of one's condition." As I pondered that statement, for some reason it didn't sit well with me.

As I think about the "reality" of a disability condition, I wondered about the reality functionally and the reality socially. I think that one can actually change the reality of one's condition. The reality functionally has been changed through curb cuts, TDD, and electric wheelchairs. Universal design has at times changed the environment such that the functional reality has indeed changed. Being someone with quadriplegia no longer means that I must live my life relegated to a bed, or unable to move about the community. Through creativity of people, the functional reality of many aspects of disability has changed and increasingly, people experiencing needen't accept many of the functional aspects of disability. Clearly, many aspects may never change. However, many aspects are truly due to an unimaginative environment.

The social reality is equally difficult to change it seems. How does one change the enviornment such that it sees people first? I have friends who have intellectual disabilities, yet they hold jobs, live in their own apartment, receive support from a variety of people, and generally enjoy their lives. Yet they are not seen as typical because the environment imposes a social reality on them that they have great difficulty escaping.

Clearly there is overlap between social and physical reality so that the distinction might be somewhat arbitrary. And the negative effects are clearly cumulative.

However, we as the church should be on the forefront of changing the reality of a disabling condition.

If I babysit for a friend's child with a severe disability, I have changed the reality of disability for those parents.
If I take a man with an intellectual disability out for lunch, I have changed the reality of disability for that man.
If I make a previously inaccessible building accessible, I have changed the reality of disabilty for anyone endeavoring to enter that building.
If I seek out persons experiencing various disabilities in an effort at evangelism, I change the reality of disability for those people regarding the Christian church.

Some aspects of disability must be accepted. Some aspects of disability need not be accepted if only the environment, in particular the Church would be what it was meant to be.

McNair

I was recently reading from a curriculum on disability. Under the heading of "Grief and Depression" was the following statement. "Acceptance does not change the reality of one's condition." As I pondered that statement, for some reason it didn't sit well with me.

As I think about the "reality" of a disability condition, I wondered about the reality functionally and the reality socially. I think that one can actually change the reality of one's condition. The reality functionally has been changed through curb cuts, TDD, and electric wheelchairs. Universal design has at times changed the environment such that the functional reality has indeed changed. Being someone with quadriplegia no longer means that I must live my life relegated to a bed, or unable to move about the community. Through creativity of people, the functional reality of many aspects of disability has changed and increasingly, people experiencing needen't accept many of the functional aspects of disability. Clearly, many aspects may never change. However, many aspects are truly due to an unimaginative environment.

The social reality is equally difficult to change it seems. How does one change the enviornment such that it sees people first? I have friends who have intellectual disabilities, yet they hold jobs, live in their own apartment, receive support from a variety of people, and generally enjoy their lives. Yet they are not seen as typical because the environment imposes a social reality on them that they have great difficulty escaping.

Clearly there is overlap between social and physical reality so that the distinction might be somewhat arbitrary. And the negative effects are clearly cumulative.

However, we as the church should be on the forefront of changing the reality of a disabling condition.

If I babysit for a friend's child with a severe disability, I have changed the reality of disability for those parents.

If I take a man with an intellectual disability out for lunch, I have changed the reality of disability for that man.

If I make a previously inaccessible building accessible, I have changed the reality of disabilty for anyone endeavoring to enter that building.

If I seek out persons experiencing various disabilities in an effort at evangelism, I change the reality of disability for those people regarding the Christian church.

Some aspects of disability must be accepted. Some aspects of disability need not be accepted if only the environment, in particular the Church would be what it was meant to be.

McNair

Yesterday was the first day of the fall 2000 and semester at California Baptist University where I teach. At one of the meetings I was sitting with a colleague of mine Dr. Keith Walters. We were thinking through some issues related to disability. The focus of the faculty training after coming back from summer vacation was the issue of diversity. In the process of one of the meetings where we were discussing diversity, disability came up as an aspect of diversity that is not necessarily addressed. When I mentioned the issues that the church faces relative to individuals with disability, some of my colleagues were absolutely astounded. They couldn't believe that the types of things I described would actually be the case within the Christian church. Later in sitting down with Keith he made the comment that we, as Christians, are totally unaware of the garbage in our own hearts. Now to me, on some level it is a gift from God that I am unaware of the garbage in my own heart. If I were actually aware of the garbage, the specific types of garbage, the amount of garbage in my own heart I would probably just sit in a corner somewhere and cry at my despicable state. So God in his grace perhaps protects us by not fully displaying to us our entirely sinful condition. He conforms us gradually to this image.

Another aspect of this is that I have observed is that often times people will carry the façade of a behavior or language that they know is acceptable. They then go through their lives and think of themselves as good people doing the right thing etc., because they are never confronted by anything that causes them to necessarily divulge what is actually in their heart. In relation to disability, I have often found that the even though in communities and individuals there is an appearance of the smooth kind of surface where everything is fine, running underneath the surface are either negative attitudes or attitudes which reflect socially constructed notions of disability in our society. Then what periodically happens is that the community or individual is confronted with some traumatic event, some demand for change on their part or some other intrusion on their smooth surface that causes them to actually live out the exterior that they appear to have. When this confrontation comes, what happens is that the negative attitudes, the negative perceptions, the social constructions that are under the surface bubble up to the surface and we find out what is going on inside a person's mind or heart. We see the garbage that Keith was talking about come to the surface.

At times when the negativity comes to the surface, it may just bubble up in a little comment or something similar that is barely perceivable. At other times, however, it's a full-blown geyser of negative attitudes that explode forth and we are shocked at what is actually going on inside of a person's head. In the church, one of my desires is to confront individuals, groups and organizations with the presence of people with disabilities such that these underlying hidden types of things which are floating below the surface may come to the surface and therefore be addressed. It's easy for me to say I love all people. Or as my students will often find when they interview pastors relative to the people with disabilities at their churches, “We would welcome people and love people if they came to church.” That's an easy thing to say because the people are not coming and so therefore these churches are not actually being confronted with the presence of people with disabilities and the changes that their presence might cause to occur.

These confrontations which cause our character to come to the surface may be evidenced in the form of temptations. We see in the Luke Chapter 4:1-13 the story of Jesus being tempted in the wilderness. His integrity and faith in God comes out through the temptations that are thrown his way by Satan. We find from that story, that the exterior that we observe in Jesus is actually supported by an interior life of faith, prayer and of study of the Scriptures which allows him to respond the way he does.

But in many churches I sometimes find that the exterior that we see is an exterior that has not been confronted by the demands that people with various disabilities might place on the church. If the church, for example, never has an individual who uses a wheelchair present, they are never forced to find out what's below the surface relative to having the commitment and wherewithal to make the church accessible. If the church has never had a child with an intellectual disability in the church, then the church may never have been confronted with what faith development in a Sunday school class for example might actually be. Instead it is living on in practices which are much more knowledge oriented. If the church is never confronted with an individual with a severe form of autism, they may never have to come to grips with what inclusiveness might require them to do relative to the Sunday morning service or other programs within the church. As a result when people with autism do show up, the negativity that's hiding below the surface bubbles up. Sometimes it is evident in comments that your child can stay if you keep an eye on them the whole time. It bubbles up in outright rejection where parents are told they need to find a different place to worship or comments that there is no longer a place for you here.

But the upshot of these confrontations can be good though they're not necessarily beneficial to the families who experience them. They can be good for the church because I suspect even though negativity may be bubbling to the surface, at some level those who are expressing the negativity must be saying to themselves, “This is not right” or “This negativity is not what I should be engaging in” or” I am not reflecting the example of Christ through this negativity.” So the confrontation of disability once again awakens the church or individual Christians to some of the garbage in their own hearts relative to acceptance of people that have not been accepted in the past. And if this garbage in the heart is actually exposed to view either for the individual to view themselves or for the group to view, there is the potential that changes might come in the individual or in a group as a result of seeing that garbage.

I at times have been in a situation where I have confronted a church or the leadership of churches regarding heart garbage relative to individuals with disabilities and their ongoing rejection. Unfortunately, sometimes those in churches cling to the garbage in their heart rather than saying when this garbage is exposed, “This is something that I should not be doing” or “This is something that I need to change.” I would like to say that more often than not there is a spirit of repentance and a desire to want to know what to do, a desire to want to figure out how are we can be more responsive. But it is definitely not always the case.

McNair

Please note the new viedeo below which is a woman's faith story from our Light and Power class. I never tire of hearing about how someone finally finds a church home who did not have one, whether or not they have a disability. But that they struggle to find a home is still an indictment on the church. Very sad.

If any of you who read this blog are available and interested, we are having a celebration of persons with disability at my church this coming Sunday, 8/8/10. Should be fun. I will have a very small part of the service but happy to support those who are putting it together. We will also be having our typical Light and Power class, so stop by for that as well. The church is, Trinity Church in Redlands, CA. 1551 Reservior Rd. Here is the website. http://trinityonline.org
Our church is not perfect by any stretch of the imagination, but we are trying to be obedient in the area of removing exclusive practices as they relate particularly to people with disabilities.

So come by if you are available.

McNair

I have written elsewhere in this blog about what have been called the "social consequences of disability." That is, how does society respond to the fact that someone uses a wheelchair or has autism, or has an intellectual disability. See for example this posting Social Healing or here Social Role Valorization and Wounding.
Both of these postings provide great detail about the social consequences of disability.

I have been thinking about social consequences in reference to 2 Corinthians 12:10. It reads like this in the NIV.

That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

This is the closing statement of a section where Paul describes the "thorn in my flesh". I am not a Bible scholar, but I don't think it is too out of bounds to think about the experiences Paul had in his life related to the quote above, at least in part due to his "thorn" his disability.
It is interesting to read the list of the 4 experiences that fall under the heading of weaknesses and think of how his experience of disability at least in part is reflected in those weaknesses.

In insults. There are so many forms of insult that persons who are affected by disability experience. Of course there are the out and out verbal insults, however, there are also the jokes, the mocking and the just general treatment people will receive simply because of their differences.

In hardships. Hardships are part of life for people with disabilities, just about independent of the type of disability one has. Many hardships are avoidable if society were only different.

In persecutions. There is much in literature which describes the experience of persecution that people with disabilities experience. Should they be Christians, they can only expect that experience of persecution to increase. Persecution is without a doubt a social consequence of disability.

In difficulties. Be they intentional or otherwise, the experience of disabilty is an experience of difficulty. One need only look at the various systems designed to help by governments and societies to get a first hand picture of difficulties.

So Paul understands the experience of living with the social consequences of disability. But his response to this is amazing. "I will boast gladly about my weaknesses, so that Christ's power may rest on me." That is his response to God's telling him, "My grace is sufficient for you, for my power is made perfect in weakness."
That is my prayer for people who are experiencing the insults, the hardships, the persecutions and the difficulties leveled against them because of differences they have in their lives which have come to be called disabilities. My prayer is that God's power would be evidenced in their weakness, be perfected in their lives through their weakness.
Let me also say, however, that my prayer is that we all will work to lessen the social consequences of disability to the degree we are able. Sure, God's power can be seen in the weakness of persecution, but I needn't be the agent of the persecution or hardship or insults or difficulties that people face. It could be that part of the grace God dispenses in the lives of persons experiencing disability is what I do in attenuating the social consequences.
But it should comfort you if you are reading this entry and you experience a disability that Paul, writer of books of the Bible, great man of faith, knows something of your experience, and in the midst of it, found strength to face the difficulties of his life through the grace of God, even seeing God's strength through his weaknesses to the point of making that a cause for boasting.

McNair

I recently had a meeting with a friend of mine and we were discussing the problems faced by people with various disabilities, particularly intellectual disabilities, who live in group homes in the community. The friend I was talking with said that the people are living in “community-based isolation.” That is, although they are physically integrated into the community they are definitely not socially integrated into the community. In reality they seem to be in a form of protective custody in the community. It's not unlike the way that law enforcement will take an individual who they feel is at risk of harm from and put them in a form of protective custody. This could occur by putting them in a jail cell or in some sort of a hotel room with guards but the idea is that you do not want any harm to come to the individual so you put them in a form of protective custody. The protective custody is fine if your goal for an individual is just to keep them from harm, but a person's life while they're living in protective custody is hardly a life. They cannot move freely about the community and they have the things that they can and can't do determined by those who are facilitating protective custody over them.

So take the protective custody example and move it over to individuals with disabilities living in group homes. The way that this custody is often acted out is that if I am a person who does not like sugary soft drinks I will keep those in my protective custody from having sugary soft drinks. If I'm a person who does not think that participating in a religious group is of importance, I willl not allow you to participate in a religious group because I don’t think it's important for you either. So often with protective custody is not just protection but also as the imposition of values of those who are facilitating the protective custody.

The lives of people living in group homes in the community should never have been designed to be a form of protective custody. Now as I have stated elsewhere in this blog I clearly understand that people with disabilities, particularly intellectual disabilities, often are the victim of people who would take advantage of them and try to use them for whatever their purient interests might be. But while I don't want to just give those who are bad people complete access to do willy-nilly whenever they would choose to do to individuals with disabilities, at the same time I don't want to be protective to the point where those with disabilities have no life because they live in a form of protective custody. They live in a form of community-based isolation.

There are those who think that because someone is physically living in the community that they are integrated in the community but nothing could be further from the truth. On some level what we actually have are little institutions in the community that are called group homes that are either so highly regulated people are living in protective custody or the people who run them are so afraid of litigation that they will not allow a person to do anything that could be in even the remotest way perceived as dangerous because they don't want the legal ramifications of a person having some sort of a problem as a result of access to the community. The end result is that people who are adults with disabilities are treated as children, protected as children, protected as you would protect a little child down to determining what they can or can't do who they can or cannot be with and so they live the life of a protected little child. But these individuals are adults. Adults sometimes do things that they shouldn't do. They smoke cigarettes, they drink too much coffee, they may go places that potentially they shouldn't go. A part of being an adult is the dignity of risk. A part of being an adult is making some decisions for myself which other people may or may not agree with.

I'm sure all of us have at one time or another spoken to someone who smokes cigarettes. Cigarettes have been determined to be bad for your health. However, do I have the responsibility to take the cigarettes from an adult, if a person lights up a cigarette should I pull it out of their mouth and say you shouldn't smoke? The ability to smoke is called freedom, and throughout our history, people have literally given their lives to protect our freedom. Well if I do grab a cigarette out of someone’s mouth, I may have to face the ramifications of that which will likely be a hostile response from the person. I can try, but I really don’t have the right to regulate someone else’s life with my own personal opinion about what that person should or should not do. However because a person has some form of disability those typical societal rules which would not allow me to regulate the life of another people another person are totally thrown out the window and I feel like I have the absolute right by virtue of the fact that a person has a disability to regulate their lives in areas of safety in terms of access to people in terms of even simple like choices like of what to eat at how late to stay up at night. In reality, this is mostly because of the effect their behaviors may have on me and my convenience as the person who is supervising the living arrangements, even though it's all done in the name of safety, in the name of protection, in the name of what's best for an individual. Even stating it in that way it's obvious to see how paternalistic these notions are. However, there is a big difference between what I think a person should or should not be able to do and what a person is able or not able to do.

So once again I am not advocating that all all notions of safety or regulation be thrown out the window. However, at the same time we must recognize that a life lived in protective custody is not a real life and what we're trying to facilitate is that people, to the degree that they're able, have a real life. And when you have a real life that does that mean that you will never be hurt. Of course not Actually the fact that you are hurt may indicate that you are living a real life. All of us disabled or not have at one point or another been hurt in a whole variety of ways whether we have been physically hurt or emotionally hurt or whether we've been victimized on some level or another, by virtue of the fact that we are living a real life. None of us would deliberately desire harm for persons with intellectual disabilities. But the only life where one does not experience any harm is by sentencing a person to protective custody. This sentences a person to not having as real a life as they possibly might have.

Now this blog is about disability and Christianity. So the major focus here is helping people to have as real life as possible by allowing them to have access to the church and the programs of the church. Are there bad people who go to church who could potentially victimize someone with a disability? Of course there are. But the lion’s share of people the majority of people are not those types of people. There is also the safeguard that people who are attending churches are looking out for one another to make sure people are safe. So can people be victimized? Of course they can. Yet at the same time the risk, the dignity of risk that goes along with access to these types of settings is the kind of thing that will facilitate a person having a real life.

McNair

I recently had a meeting with a friend of mine and we were discussing the problems faced by people with various disabilities, particularly intellectual disabilities, who live in group homes in the community. The friend I was talking with said that the people are living in “community-based isolation.” That is, although they are physically integrated into the community they are definitely not socially integrated into the community. In reality they seem to be in a form of protective custody in the community. It's not unlike the way that law enforcement will take an individual who they feel is at risk of harm from and put them in a form of protective custody. This could occur by putting them in a jail cell or in some sort of a hotel room with guards but the idea is that you do not want any harm to come to the individual so you put them in a form of protective custody. The protective custody is fine if your goal for an individual is just to keep them from harm, but a person's life while they're living in protective custody is hardly a life. They cannot move freely about the community and they have the things that they can and can't do determined by those who are facilitating protective custody over them.

So take the protective custody example and move it over to individuals with disabilities living in group homes. The way that this custody is often acted out is that if I am a person who does not like sugary soft drinks I will keep those in my protective custody from having sugary soft drinks. If I'm a person who does not think that participating in a religious group is of importance, I willl not allow you to participate in a religious group because I don’t think it's important for you either. So often with protective custody is not just protection but also as the imposition of values of those who are facilitating the protective custody.

The lives of people living in group homes in the community should never have been designed to be a form of protective custody. Now as I have stated elsewhere in this blog I clearly understand that people with disabilities, particularly intellectual disabilities, often are the victim of people who would take advantage of them and try to use them for whatever their purient interests might be. But while I don't want to just give those who are bad people complete access to do willy-nilly whenever they would choose to do to individuals with disabilities, at the same time I don't want to be protective to the point where those with disabilities have no life because they live in a form of protective custody. They live in a form of community-based isolation.

There are those who think that because someone is physically living in the community that they are integrated in the community but nothing could be further from the truth. On some level what we actually have are little institutions in the community that are called group homes that are either so highly regulated people are living in protective custody or the people who run them are so afraid of litigation that they will not allow a person to do anything that could be in even the remotest way perceived as dangerous because they don't want the legal ramifications of a person having some sort of a problem as a result of access to the community. The end result is that people who are adults with disabilities are treated as children, protected as children, protected as you would protect a little child down to determining what they can or can't do who they can or cannot be with and so they live the life of a protected little child. But these individuals are adults. Adults sometimes do things that they shouldn't do. They smoke cigarettes, they drink too much coffee, they may go places that potentially they shouldn't go. A part of being an adult is the dignity of risk. A part of being an adult is making some decisions for myself which other people may or may not agree with.

I'm sure all of us have at one time or another spoken to someone who smokes cigarettes. Cigarettes have been determined to be bad for your health. However, do I have the responsibility to take the cigarettes from an adult, if a person lights up a cigarette should I pull it out of their mouth and say you shouldn't smoke? The ability to smoke is called freedom, and throughout our history, people have literally given their lives to protect our freedom. Well if I do grab a cigarette out of someone’s mouth, I may have to face the ramifications of that which will likely be a hostile response from the person. I can try, but I really don’t have the right to regulate someone else’s life with my own personal opinion about what that person should or should not do. However because a person has some form of disability those typical societal rules which would not allow me to regulate the life of another people another person are totally thrown out the window and I feel like I have the absolute right by virtue of the fact that a person has a disability to regulate their lives in areas of safety in terms of access to people in terms of even simple like choices like of what to eat at how late to stay up at night. In reality, this is mostly because of the effect their behaviors may have on me and my convenience as the person who is supervising the living arrangements, even though it's all done in the name of safety, in the name of protection, in the name of what's best for an individual. Even stating it in that way it's obvious to see how paternalistic these notions are. However, there is a big difference between what I think a person should or should not be able to do and what a person is able or not able to do.

So once again I am not advocating that all all notions of safety or regulation be thrown out the window. However, at the same time we must recognize that a life lived in protective custody is not a real life and what we're trying to facilitate is that people, to the degree that they're able, have a real life. And when you have a real life that does that mean that you will never be hurt. Of course not Actually the fact that you are hurt may indicate that you are living a real life. All of us disabled or not have at one point or another been hurt in a whole variety of ways whether we have been physically hurt or emotionally hurt or whether we've been victimized on some level or another, by virtue of the fact that we are living a real life. None of us would deliberately desire harm for persons with intellectual disabilities. But the only life where one does not experience any harm is by sentencing a person to protective custody. This sentences a person to not having as real a life as they possibly might have.

Now this blog is about disability and Christianity. So the major focus here is helping people to have as real life as possible by allowing them to have access to the church and the programs of the church. Are there bad people who go to church who could potentially victimize someone with a disability? Of course there are. But the lion’s share of people the majority of people are not those types of people. There is also the safeguard that people who are attending churches are looking out for one another to make sure people are safe. So can people be victimized? Of course they can. Yet at the same time the risk, the dignity of risk that goes along with access to these types of settings is the kind of thing that will facilitate a person having a real life.

McNair

This morning, the Joni and Friends website shared that Joni has been diagnosed with cancer. Please visit this website for the full letter drafted by Joni.

In the letter she states,

Please pray that the upcoming tests, surgery and subsequent treatment will be successful (thankfully, my quadriplegia has no bearing on either the surgery or the treatment; I'm like any other woman with breast cancer -- I simply want to focus my energies on getting better).

Of course, I believe that God can and does heal and I covet your prayers to that end. Most of all, please pray that God will pour out grace-upon-grace on Ken and me.

God has used and continues to use Joni in my life as an example of trusting in the sovereignity of God. I would wish to know and trust in God as Joni has learned to do throughout her life, but I would not wish to face the trials that she has faced to give her complete trust in God. When I waver in my faith or in my trust in God (I wish that were less often than it is) I will often think of her and am encouraged.

I must also tell you that through some opportunities I have had to meet and speak with her, she is real. Real about her life experience and the impact it has had on her. She is not some pie in the sky purveyor of platitudes. But someone who has lived the raw edge of life's challenges, coming away with a dogged desire to trust God, and look on her significant challenges as a way to encourage others. Her faith is such that I suspect she received the diagnosis of cancer anticipating how God would use it in her life to His glory.

Please keep Joni and Ken in your prayers as they move forward into the unknown of cancer. Cancer may not be known to them, but God is known and as real as quadriplegia, even more real. I leave you with one more quote from her letter.

For years I have hoped that my quadriplegia might encourage people struggling with cancer… now I have a chance to truly empathize and journey alongside, affirming that God's grace is always sufficient for whatever the disease or disability. (Joni 6/23/10)

McNair

That was the title of a presentation given to the entire membership this morning at the AAIDD conference. The majority of the presentation centered on Mrs. Shriver who was an amazing advocate for persons with intellectual disabilities in America. Her brothers President Kennedy and Sen. Edward Kennedy are the ones often credited with the actual programs and legislation that affected individuals with disabilities, but as one of the presenters indicated quoting Sen. Kennedy, "It was all Eunice!" I doubt that is entirely true, but it was clear nontheless from the presentation that she was the momentum behind much of the policy that impacts people with a wide variety of disabilities. For a more complete discussion of her contributions, I would refer you to an article by Dr. David Braddock entitled, "Honoring Eunice Kennedy Shriver's Legacy in Intellectual Disability" published in the journal, Intellectual and Developmental Disabilities, vol 48, number 1, February 2010.

There were several things about the presentation about Mrs. Shriver, however, that I was unaware of. I plan to become a student of her life in the future, but these two things were quite remarkable.

First is that she was a very devout Catholic. Steven Eidelman one of the presenters today who knew Mrs. Shriver personally, indicated that she would attend Mass twice a day, rain or shine, going to a little church near where their offices were. I love knowing that someone having such a profound impact on our country in the area of disability, was at least partially motivated by her faith in God. I wish that had been explored much more in the presentation, but it was mentioned and described as a critical part of who she was.

The second was that she was staunchly pro life. Another of the presenters, Deborah Spitalnik who was clearly not pro life, even apologized for giving Mrs. Shriver that label. Obviously, in the circles she runs in, to be called pro life is to be denegrated. How difficult for her (Spitalnik) to reconcile the life of and contributions of Mrs. Shriver with her pro life stance. She concluded her comments with a comparison of Sen. Kennedy and Mrs. Shriver as being loving family members on opposite sides of the issue and how wonderful that was. But there were the political jokes or innuendo about Bush or others who might disagree with her. Yet she herself could not even use the term pro life without an apology for characterizing Mrs. Shriver that way.

To me, it is not Mrs. Shriver who was inconsistent in her position towards life and intellectual disability, it is those like Spitalnik who are inconsistent. How can someone be in an organization like AAIDD which supposedly is all about what is best for persons with intellectual and developmental disability and advocate for the taking of their lives via abortion. This has been the case in the past as well with the AAIDD stage being given to those who would "prevent" intellectual disability via abortion. To me it is painfully inconsistent.

But praise and thank God for the life of Eunice Kennedy Shriver. She made her mark on the country and the world as well, bettering the lives of persons with disabilities in myriad ways. To quote the closing paragraph of the Braddock article mentioned above,

So, in every country across the globe, in every city, town and remote village - and she touched almost all of them during her life - let the word go forth to honor the legacy of Eunice Kennedy Shriver.

McNair

I am currently at the annual meeting of the American Association on Intellectual and Developmental Disabilities. I am the incoming president of the Religion and Spirituality Division of the organization and have been enjoying interactions with old friends and have been making some new friends.

Today, I attended a session by Dr. Robert Schalock, a very important researcher in the field of disability. He was the moderator of a session about the Intellectual Disability: Definition, Classification, and Systems of Supports (Eleventh edition) The AAIDD is the organization which defines intellectual disability, which is no small task as it impacts people in terms of receiving services and legal responsibilities. I found it a very informative session, and those in attendance were a "who's who" of the field of intellectual disability for the past 20 years or so.

Two very positive things jumped out at me from the meeting actually 3. First, I plan to purchase the book noted above. I think it is critical to understand the direction the field is going in, and particularly relates to my interests in policy development for the church. Second and related, there seems to be a movement in the definitions towards more of a community focus, and a understanding of intellectual disability on the basis of services needed versus past notions of assessment and identification. This has always seemed to be an issue. If I label you intellectually disabled, that really tells me very little about who you are in really any way. However, should I describe the supports or services you need, I have a better handle on your needs professionally, and I at least have the potential of moving away from giving you a label that causes you to be devalued by society. It is a positive move and I raised my hand and told them so!

Thirdly, attached to the definition are what they call 5 assumptions. I will list them all here at a future date, when I have my copy of the book. But assumption #5 I did copy down. Here is what it states,

With appropriate personalized supports over a sustained period, the life functioning of the person with intellectual disability generally will improve.

I love that, but recognize that much of those kinds of efforts cease after one leaves school. I have clearly seen this principle in effect in a religious setting. Spiritual understanding and its effect on behavior, language, faith development has been at times staggering to me. I am ashamed to admit that I have had expectations that have often been beautifully exceeded by friends of mine with disabilities. I will often look at Kathi at our Light and Power class, at times holding back the tears at the spiritual insights of people, who as adults, continue to grow and develop as human beings.

I also raised the issue (when I raised my hand) that I feel that we are a bit stuck with group homes being as they are, in that we seem to be at a place, similar but not the same, that we were with institutions in the 70's. People are in the community in little institutional homes rather than in large institutions of the past. They are still socially isolated, they are still controlled and lacking in freedom, but it is individually on a smaller scale (although taken together, it is a scale of great magnitude). Dr. Schalock stated that we don't need another deinstitutionaliation movement, but I am not sure I agree. I think we do need another de-little-institutionalization movement where people gain freedom while in group homes. It is the next phase, I think, and churches are an integral part of facilitating the next phase. The Christian community can be both advocating for change, and also be the provider of real lives for group home residents. Let us have access to isolated people and let us bring real life to them. I honestly think that is what we have to offer.

McNair