The Powerlessness of Words

Eloquence is a gift. A wise word spoken in a timely way is incredibly soothing. Reams have been written about the power of the pen and tongue. More needs to be written about their powerlessness.

Have you ever heard,

• "I taught that concept all semester and they missed it on the exam. What is wrong with my students?!"

• Or, "I can't believe we're even having this issue, I preached on this last week!"

• Or, the even more common "I tried to tell her! but she won't listen."

One of the reasons the Body of Christ needs to passionately include people with developmental disabilities (when I say include, I do not mean tolerate) is we have got to stop worshipping of the power of language. We think we can change each other with crafty speech or pushing our favorite authors and preachers. We think most power lies in verbalization. Eloquence becomes a verbal battering ram and a shield. If you can out-talk your opponent, you must be right. If you can out-maneuver another verbally, you do not have to listen. If you can boil your point down to a bumper sticker, even better. The man who has the last word wins.

Nothing nixes the power of language like autism (and other developmental disabilities). And eloquence is a joke.

When I wish to relate in an impactful way with my son who has autism , I not only have had to learn every element of his body language but I have also had to become aware of mine. I have had to carefully craft my words so he can process them and I have to correctly interpret his unusual language patterns to make sure I assign them his intended meaning. Every tone and inflection is a dance. To impact him, I have to know him intimately, and this highly attuned process in turn deeply impacts me.

Imagine if this kind of attentiveness infected the Body of Christ. "Oh how they love one another," would be a common observation by outsiders. Instead we sound like Charlie Brown's teacher to the world (and to each other). "Ma mwah, ma mwha, mwha…"

I am convicted as I type.

Courage in the Face of Testosterone

Grace, my 15 year old daughter, was caught in a very uncomfortable situation. Every day it was the same. She was trapped in a room where sexual banter from teenaged boys was inescapable. Should we call the principal, call the boys' parents, talk to the boys ourselves? These were classmates she wanted to stay in relationship with, acquaintances she did not want to offend. Because this was a problem she was going to have to face the rest of her life, we offered guidance and stood back. Soon after, Grace found the courage and opportunity to speak up. Her humorous yet direct approach had the desired effect and the banter subsided. Clearly it had never crossed their testosterone laden minds to put a filter in place. More importantly, they valued Grace enough to bend to her preferences. A relationship with her mattered.

Molly, my 13 year old daughter was caught in a very uncomfortable situation. A special needs man in his late 50's enjoyed an occasional chat with her at church. "Those girls over there are talking about R rated movies," he stated frankly one evening pointing to a group of gangly teens. "I don't like R rated movies because people get in bed together naked." Molly was dumb-founded and left feeling helpless. Should we call the preacher, call the man's group home director, talk to him ourselves? This is a brother in Christ we want to stay in relationship with and show respect to no matter his label. More importantly, we knew this was a situation Molly was going to be facing the rest of her life. Her brother shows no signs of developing the sophisticated filter he will need as an adult and most likely he will have friends and acquaintances that will be facing similar social hurdles. So, we coached Molly for the inevitable "next time". She is rehearsing phrases like "You should not talk about that with me. It makes me uncomfortable," and other direct approaches. Clearly this gentleman has limited filtering in place but a relationship with him matters. Relationships are what he desperately wants and too often he is written off as creepy and avoided in his own church home.

Perhaps we could come to the rescue and remove some of these harassing obstacles before our girls. We choose rather to let them discover that life as a follower of Christ requires not only love, but a great deal of courage.

II Tim. 1:6-7 For this reason I remind you to kindle afresh the gift of God which is in you .... For God has not given us a spirit of fear, but of power and love and a sound mind.

Can a Squeeze of the Hand Be Equivalent to the Sinner's Prayer?

I think there is a need for the evangelical church to redefine what evidence of faith is. I am not familiar enough with the rites of more liturgical communities but, among main stream evangelicals, I have observed the most common check point for an individual's spiritual journey to be the "sinner's prayer". One version is as follows:

Dear Lord Jesus,

I know that I am a sinner and need Your forgiveness. I believe that You died for my sins. I want to turn from my sins. I now invite You to come into my heart and life. I want to trust and follow You as Lord and Savior.In Jesus' name. Amen.

In many groups, repeating this prayer, combined with an alter call and the date of the event written in the back of one's Bible, is the fundamental requirement for salvation. I have seen this prayer be the first step to a changed life. On the other hand, I have seen "the prayer" prayed in large groups with more importance placed on a preacher's need to feel effective than sensitivity given to impact on each individual. Because of this myriad of individual situations, I am nearly convinced the invitation to this life altering decision should only be done one on one, relationally.

The tailoring necessary when presenting Christ's message is never more evident than when sharing it with an individual with disabilities. Presenting the message and attaching meaning to a person's response requires an intimate knowledge of the individual. This week I stood by the bedside of a dying family member, her ability to communicate cut off by a stroke. Major issues of unforgiveness stared us in the face. By her own admission before the stroke, the gospel had been both shared and lived out before her. She had made a few inquiries but her curiosity had led to no decision regarding her own spiritual state. Now she had no voice, no control, not power to effect even the most rudimentary of communication. When a prayer was voiced in her presence crying out for her to release her bitterness and accept what Christ had done for her, her first attempt at movement in days was made - a jerky attempt to grab my hand. Professional clergy do not know my relative like I do. That hand jerk would have been overlooked. I knew it for what it was, a positive, receptive response.

When there are barriers to communicating due to a disability, the sinners prayer is often impractical. This strips from a well trained evangelical a rite he considers to be cornerstone for beginning a new life spiritually. Without the sinners prayer as a starting point, it is easy to adopt the unspoken default position that God somehow grandfathers individuals with disabilities into the kingdom. Instead of wrestling through the the theology of such an assumption, many just turn and continue to focus on those they feel can be impacted and in turn make an impact - i.e. those who can repeat the sinners prayer and get others to repeat it. We need to seriously wrestle with what it means to present the gospel to the disabled, especially for those who face great barriers to communication. We need to give just as much thought to what it means for them to respond. No doubt it will challenge us to ponder our own response as well.

Arlyn Kantz

Autism and the Ache of God

1/15/10

Hang around a group of parents that have children with special needs and eventually you'll hear about spiritual lessons learned from parenting a child with a disability. The spiritual lessons mentioned might include:

• a fading of materialism and prioritizing of relationships

• an enjoyment of the present moment and exultation in little victories

• a daily death knell to self-centeredness

• a focus on eternity and expectation of wholeness in the next life

While learning these lessons may shift a parent to a nobler set of values, none of them embody the central theme of the Gospel or the work of Jesus Christ. Any of the above could be a appropriated to a vague overlapping of a number of major religions. These spiritual lessons are honorable but not distinctly Christian.

Years ago, my friend Jodi helped me define a distinctly Christian lesson she learned when providing childcare for my boy Willson who has autism. (Jodi, is a gifted friend who entered Willson's world, won his trust and loved him with dedication. She is one of the few people he asks for by name even though we do not cross paths as we once did). One day when I came to pick him up Jodi commented, "Arlyn, you know how hard we work to communicate with Willson, how hard we bend and twist to make him understand what we want from him and for him? Well I think that is how hard God works to communicate with and relate to us." Her comment came flooding back today as I read the following from THE SIEGE by Clara Claiborne Park, a fellow mom of a child with autism:

What is the task of those who try to touch the untouchable, to reach those who have found reasons to keep themselves separate? How is one to tender the world desirable to those who do not desire it? One holds out a flower, a soft doll, an orange candy. One points at a bird. All are ignored, this time and the next and the next. (p.90)

The Christian God aches for relationship, never gives up, and in His pursuit He faces misunderstanding and rejection again, again, and again. If this portrayal of God seems foreign, I encourage you to read Hosea 2 or Jesus's anguished cry in Luke 13:34. How often do we not understand the intimacy He offers? To quote C.S. Lewis very loosely, we play with mud pies in the gutter when we have been invited to a feast.

The Intention to Comfort - Correcting Common Mistakes

As we reflect on our years as members of the disability community, below are cautions to our fellow believers against common buzz phrases that, though spoken with intentions of comfort and connection, need to be avoided.

1. God will not give you more than you can bear. This over-used phrase has absolutely no scriptural

basis. It reflects a common misconception of 1 Cor 10:13 which is about temptation to sin, not hardship and tragedy. An insightful friend recently told me, "When Nero dipped Christians in tar and set them aflame on pikes, fellow believers did not shout out, 'don't worry, God will not give you more than you can bear!'" Instead, we ask our wonderful, well-meaning fellow believers to focus on 2 Cor 1:8-11 when they desire to bring comfort. Here Saint Paul himself begins, "We do not want you to be uniformed, brethren, about the distress that befell us... how we were so utterly and unbearable weighed down and crushed that we despaired even of life itself." The verses that follow, 9-11, give a much better road map to walking with someone through incomprehensible adversity.

2. God chooses special people to raise special children. Parents of a children with a disability often hear, "I couldn't do what you do. The Lord knew what He was doing giving you your special child. You are so amazing." At face value this is a compliment. What could possibly be wrong with encouragement of this nature? The problem is there is a hidden message - God would never do that to me because He knows I couldn't handle it. What a relief. The truth is, grace is not given until the moment it is needed. Instead of this supposed compliment, we ask our fellow believers to read up on the disorder or disability that is impacting their friend's life. Then ask thoughtful questions which show a willingness to learn and help.

3. I know how you feel, I understand. (An exception for us is when this statement comes from a fellow parent of a child with autism). Most people do not comprehend what is like to raise a child with a disability. Unfortunately this does not lead most to simply admit ignorance and find ways to educate themselves. The practice of making meaningless statements of supposed comprehension or attempting to create points of common experience does nothing but widen the gap. For example, we once listened to a minister speak to a group of parents dealing with autism. He claimed a level of connection because he had a child with diabetes. We knew his heart enough to know he meant well, but the attempt did much more harm than good. Frankly, "I know" and "I understand" could be dropped from use in most social situations. These phrases do not create closeness or communicate the connection that many suppose. We should rather practice, "I don't know but I'm willing to learn" and "I don't understand but I am here for you." We would at least be beginning in a place of honesty. It is what we have to say when we meet a parent whose child struggles with cerebral palsy.

Will & Arlyn Kantz

Prov. 25:20 Like one who takes away a garment on a cold day, or like vinegar poured on soda, is one who sings songs to a heavy heart. (smiley face image found on reson8.org/stuff/leadership/)

Genuine Bona Fide Undrafted Volunteers

2-11-09

Last month at a national conference on disability ministry the key note speaker, the pastor of a large church, cried out to the crowd to not give up on their pastors who do not "get it". Ironically, he himself did not "get it" until his own son was touched by a disability. I'm not pointing fingers mind you. I was drafted too. My husband and I would not be giving our lives to curriculum development and church inclusion if our own son was not coping with autism. It just makes me more amazed when I run into someone who "gets it" and freely gives his or her life to special needs ministry as a genuine bona fide undrafted volunteer.

At the conference my husband and I had the privilege of going to dinner with Jeff and Kathi McNair. On the way into the restaurant we asked how Jeff "got into the business", expecting an answer about a brother or sister or nephew struggling with a disability - but there was NO family connection whatsoever. What further impressed us is that Jeff and Kathi don't reek of paternalism. They truly love folks with differences as equal members of the Body of Christ. (I suspect Jeff sometimes prefers their company). When the McNairs invited our family to visit their home (hope to take ya'll up on that soon) we knew they meant it and that if our son licked their salt and pepper shakers until they clogged, that it was not a big deal. I do not do my new found friends justice so I will let Jeff's own words do my work for me. The following paragraph is from Jeff's article The Indispensable Nature of Persons with Intellectual Disabilities to the Church (Journal of Religion, Disability & Health, Vol. 12(4), 2008 C 2008 by The Haworth Press. All rights reserved).

Why does the church need intellectually disabled brothers and sisters in Christ? Why does the church need members affected by mental illness? Why does it need paraplegic brothers? . . . Personally, I, as a member of the Christian church, do not need another sermon on 1 Corinthians 13. What I really need are people who challenge me to live and love in the manner described in that passage. .... Challenge me to love a mentally ill woman. Have her in the church in my midst. Have the church leadership clamor to figure out what to do with her. Hopefully she will have poor social skills so that the comfortable worshippers are made uncomfortable. Perhaps people would even threaten to leave the church if something is not done about the woman. Then we would all be forced to learn what love is or leave the church, rather than the person with disabilities being forced to change (when they are potentially unable to change) or be excluded. There is a big difference between expecting someone to learn love and expecting someone to recover from a disability.

Jeff's words breath life to me as a mother who used to hope her son would not upset Sunday school too much for the other children. I have grown to be a better advocate since my first poor attempts but when someone who does not live and breath autism (or any other all-consuming disability) gives me permission to hope and expect more from the Body of Christ, it moves me out from a place of frustrated advocacy. It moves me to a place of security that God intends to fully integrate his Church, for His Church's sake. Thanks Jeff and Kathi. May the number of genuine bona fide, undrafted volunteers quickly multiply.

Begging and Explaining

November 16, 2008

I don't cry easily but I did so publicly last Saturday - standing in my son's school parking lot surrounded by fellow parents. The tears leaking from the corners of my eyes were from sad desperation but I'm sure those around me thought it was the cold November wind. I was totally helpless. Helpless to do anything about the situation I was stuck in, and helpless to make anyone around me understand. I was attending a school sponsored fall festival (who came up with these events?) which included a skit my youngest was to perform in. Call time was 10:45 so we showed up precisely at 10:45. I brought along all three of Christopher's siblings thinking we'd be out of there by 11:15 tops. Within the first 10 minutes of arriving in the parking lot, the crowds, giant loud speakers blaring out rock music, and a general sense of chaos sent my oldest son into a full autistic melt down. Willson covered his ears and screamed, "NO!" over and over again and I knew the only thing to do was to get him back to the car as quickly as possible. Both sisters remained there with him to calm and comfort. Christopher was down to an audience of one. As the wait continued I decided to make an appeal to the folks in charge. Perhaps they would push Christopher's skit up to top of the docket. But instead of understanding and flexibility, I got blank stares and amazement that I would want to upset the schedule of so many performers for the needs of one sibling. I returned obediently subdued to my place of waiting, 3 kids out of my sight and care. I determined to remain faithful for once to the youngest who always got the short end of the stick, the one who never had his whole family show up. Christopher finally performed at 12:15. He did beautifully. I managed to video tape it for the remainder of the family but I hate fall festivals, now more than ever.

My husband and I are now a part of a grand experiment. We are limping along trying to create and discover what a fully inclusive church might look like. I know again with deeper passion than ever before what we are aiming for - a community in which we, and parents like us, don't have to beg and explain.