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