WINGS: A FAITHLETTER FOR UNITED METHODISTS WITH DISABILITIES AND THOSE WHO CARE ABOUT THEM

Winter 2006 -- Vol. 16, Issue 3, No. 63

Those who wait upon the LORD shall renew their strength, they shall mount up with wings like eagles....Isaiah 40:31 [NRSV]


FROM WHERE I SIT: UNSOLICITED SOLICITUDE AND OTHER ANNOYANCES
By Jo D'Archangelis

	She seemed like a pleasant enough woman as I rolled up and stationed myself alongside her chair in the hospital outpatient waiting room. I was there to pre-register for a "minor procedure" that was to take place a few days later. She was talking to another woman sitting across from her, apparently a friend whom she had accompanied there. 	
	When her friend was called into another room, she turned to me. "How long have you been suffering like this?" she asked, her words fairly dripping with pained concern. Uh-oh. Sidestepping the "suffering" stuff, I politely answered, "I’ve been using a wheelchair since I was ten." 
	Her eyes welled up with tears. "Oh you poor dear," she softly intoned. Undeterred she went gamely on. "Are you in much pain?" she asked. Choking back the answer, "Just the pain in my nether regions from people like you," I again politely responded, "No, not at all." 
	She seemed both taken aback and, yes, disappointed by my answer. "Well, that’s a blessing at least," she murmured, smiling weakly through her tears. At that point the nurse called her into the other room before she could afflict me further with her lugubrious solicitude.
	Of all the reactions I get to my very apparent disability, this kind is probably the most annoying. I can take it when strangers avoid looking at me or, conversely, look right through me as though I didn’t exist; who flee from me as though I were contagious; who conduct business with the person standing next to me as though I were a child; who from out of nowhere ask personal questions about my physical condition and daily activities ("Why are you in that wheelchair?" "An old football injury."); or who offer gratuitous advice.... 
	Like the woman who came up to me one day as I was tooling along the sidewalk and said, "You know, you can have surgery to straighten out your feet?" (Well yes I am aware of that but my poor little deformed feet don’t bother me half so much as they seem to bother other people and anyway I have excellent medical reasons for avoiding as much surgery as possible but thank you very much for adding to my day.)
	I can tolerate natural curiosity (especially that of children), ignorance, indifference, even rudeness and fear, much more than I can tolerate lachrymose sentimentality and pity. I’m not talking here about real sympathy. Receiving real sympathy and understanding from people when you most need it makes you feel better about yourself and your situation than you did before. With the teary-eyed and saccharine attentions of people like the hospital lady, though, you feel like you’re drowning in a vat-full of saltwater and maple syrup.
	Recently the editor of a post-polio newsletter* wrote that one day she rolled into a store only to have the sales clerk ask her with some surprise, "Are you here by yourself?" Linda assured her that she was and went off to do her shopping. But a few minutes later she decided to take this as an opportunity to "educate" the sales clerk as to what she could actually do as a disabled person. She returned and politely explained that she, like many people in wheelchairs, drove herself in a wheelchair-accessible van using hand controls. The sales clerk expressed even more surprise, and Linda left the store feeling more positive than she normally did after such encounters. 
	Okay, this is a good response in many cases: to replace ignorance with information about the real world of disability and perhaps chip away a bit at stereotypical notions. However, I don’t think it would have worked with the hospital lady. Letting her know that my life was not nearly as miserable as she hoped it was would only have made her unhappy.

*"The Polio Messenger," the newsletter of Polio Outreach In Connecticut, edit. Linda Wheeler Donahue.


RESOURCES AVAILABLE ON WELCOMING PERSONS WITH DISABILITIES IN THE CHURCH

	Ushers, greeters, and Sunday school teachers can learn ways to be more comfortable with persons with disabilities by using the booklet, "On Greeting Persons With Disabilities, A Suggestion Manual for Ushers and Greeters." Homegrown in the Texas Conference by the Houston Chapelwood United Methodist Church Special Needs Council in conjunction with SEMAR (Southeastern Methodist Agency on Rehabilitation), this booklet covers many types of disabilities separately and includes such topics as invisible illness, instructions for aiding persons with disabilities in times of disaster, and specific ideas for helping persons with seizures. The booklet may be down-loaded free of charge from the website of The United Methodist General Board of Discipleship Division of Worship at www.gbod.org/worship/.

	Friendship Ministries, a non-profit, non-denominational Christian organization dedicated to the inclusion of people with cognitive impairments in the active life of the church, has available a newly revised set of resource tools entitled "Expressing Faith In Jesus: Church Membership For People With Cognitive Impairments" by Ronald C. Vredeveld. The resource tools -- including preparation study materials, sample questions (for interviews with church councils, e.g.), sample liturgy (for worship services, e.g.), and keepsake certificate -- are easily adaptable to baptism, confirmation, profession of faith, or whatever the ceremony involving an affirmation of faith may be called in different churches. To learn more or to order "Expressing Faith In Jesus" (mention source code: FB5002), access the Friendship Ministries website at www.friendship.org/expressfaith, or call toll-free 888-866-8966. 

	Bethesda Lutheran Homes and Services, Inc., has a plethora of materials on disability awareness. Entitled "Awareness in Action Materials," these resources include a developmental disability awareness litany, a sermon outline, three color posters, Bible studies for youth (jr. high and high school levels) and for adults, and more. Phone 1-800-369-4636 ext. 3535 or go to the website: www.blhs.org/awareness. At the website you can order a complimentary "sample packet."


"OPEN-DOOR POLICY" AT GLENDALE UMC

	The doors to the education building and church offices at Glendale First United Methodist Church in Glendale, Calif., are now wheelchair accessible.
	A push of a button and the double glass doors swing open automatically, enabling anyone who uses a wheelchair, cane, or walker, or who just has difficulty pushing and pulling open heavy doors, to pass through them without effort. 
	John Bartoo, a church member selected by the Board of Trustees to coordinate the project, noted that the automatic doors will make it much easier for many of the older members of the church. He called the door project completed this past December "just a small start" in making the church more accessible.


THE BIRTHDAY PARTY
By Sarah Schaller-Linn

	"I want a party," my father whispered. "What did you say?" I  moved my chair closer to his left side and leaned over. 
	My father was lying in a bed in the rehabilitation unit of the Wausau Medical Center. Since his stroke a few weeks earlier, he had suffered from what is called "left side neglect," which meant that he was no longer aware of anything on his left side. To stimulate him to make use of this side, we were always to approach him from his left. Thankfully, the stroke had not affected his speech, although it left him very weak, unsteady on his feet, and had damaged some of his cognitive ability.
	"I want a party, a birthday party," he repeated more forcefully this time.
	"OK, a birthday party, but you do remember that your birthday isn't until June 28? That's still several months away."
	"I know, I know," he said, "but at 81 years old, I don't even buy green bananas anymore. I've been thinking it all through and I want a party, a big party with ice cream, and lots of hot fudge syrup. And I want everyone to come -- Mother, you girls, my sister, my friends, and all the workers and patients on the rehabilitation unit -- everybody."
	Still puzzled as to his mental state and thinking of all the difficulties this request would entail -- getting approval from the medical unit, knowing the restricted diets of the other patients, and the rush of throwing a party on short notice -- I left his room and conveyed this odd request to my older sister.
	A day later I returned with approval from the medical staff, invitations, and a phone list of local friends and family.
	"Dad, the party is on. Your job is to do the word of mouth publicity and distribute the invitations in the unit. Trisha and I will do everything else." A big smile lit up his face.
	The next two days were a flurry of preparation. I was sent off to the grocery store to buy what I thought were adequate amounts of goodies, only to be sent back again by my sister. "He specifically said lots of hot fudge syrup -- no skimping!"
	Saturday arrived and the excitement was building on the unit -- nothing like this had ever been done here before. At 5:30 my sister and I slipped into the empty rehab dining room and quickly set up the food and decorated. Promptly at 6:30 a caravan of wheelchairs started down the hall toward the dining room -- my father proudly, albeit somewhat unsteadily, leading the way. The music of Glenn Miller played softly in the background, the lights were dimmed, and the food, including the big pot of fudge syrup warming on the stove, was abundant.
	My sister and I looked at each other and smiled. More and more people arrived filling the room: staff members who came back after their shift, patients, friends of my parents, and my cousins whom I hadn't seen in years. My father opened his presents -- he even got green bananas. And there was joy. Like the hot fudge syrup, it was more than abundant. Enough for us all.
	As of this writing, my father has celebrated two more birthdays -- on June 28.

From "Alive Now" (Nov./Dec. 1999).


I WALK BY FAITH (Anonymous)

I know the sun
Warm like a shawl across my shoulders
Mornings reading on the parlor sofa
Or like a gentle hand close to my cheek,
Sheltering half my face
Against the cold on a still winter day.
Facing east in early morn
A soft luminescence invades the darkness
And I know the sun has risen
Well before I feel him push away the morning chill.

My family speaks in wondering tones
"The moon rests so red upon the distant hill!"
"The Milky Way is such a humbling sight!"
Collectively they draw their breath in awe
As a meteor shoots across the sky.
They are united in the moment
By a streaking point of light
And I am left apart
In the engulfing darkness of my night.

Even so I listen, too, as people
Tell of God in wondering tones
"He spoke to me, gave me this song,
"Caused me to go where I had not planned."
They draw in their breath in unison
At some unexpected glimpse of his presence
And I wonder, am I spiritually blind?

But I know the son.
He has risen,
And I will walk toward him.


I AM DISABLED AND...

I praise you LORD God, the Father of mercies and the God of all consolation, for you console us in our affliction so that we may be able to console those who are in any affliction with the same consolation we have received from you. Therefore, since we are engaged in this ministry by your mercy, we do not lose heart. For you who said, "Let light shine out of darkness," have shown in our hearts to give us the light of the knowledge of your glory in the face of Jesus Christ. But we have this treasure of your indwelling presence in our disabled bodies as in humble jars of clay so that it may be made clear that this extraordinary power belongs to you and does not come from us.

Affirmation #15 based upon 2 Cor. 1:3-4, 4:1-7 (NRSV) by Ken Tittle and Mariposa Ministry and Mariposa Online.


A MORE PERFECT SOCIETY: WHY I WOULDN’T WANT TO LIVE THERE
By Angela Beise 

	Recently my son's teacher said something that shook me to the core of my being. Michael is 10 years old and has a rare genetic chromosomal disorder called 18Q-minus. After my husband and I moved to France three years ago with our four children to work in missions, we were surprised to find that France does not have many schools for disabled children. The society in general isn't friendly to the disabled. For three years, we have searched for a school for Michael, but to no avail. 
	Fortunately, we have a teacher who comes to the house twice a week to work with him. As she was leaving our house after a therapy session, she advised us to apply to a couple of schools that are specifically for children with Down syndrome, even though Michael does not have Down. Then she made the shocking statement. "Schools for Down children are starting to take children with other syndromes since Down is becoming so rare," she said. "Now that tests can tell so early in pregnancy that a baby has Down, fewer people are choosing to have them."
	Michael has benefited greatly from incredible advances in medical technology. He was born with a cleft lip and palate, and feet that required extensive surgery. I am grateful for the doctors and technologies that have met his needs. But as disabled children are becoming more rare, I wonder if medical technologies are robbing affluent societies of an underappreciated wealth.
	In the days following this teacher's remark, I tried to imagine a society devoid of people with disabilities. What if any and all babies with special needs were to be eliminated? What would a society look like if everyone were "normal," if we never had to make provisions and exceptions for people who are deaf, blind, mute, or lame?
	I didn't have to look any farther than my own family to start finding answers. My children are among the most unselfish people I have ever known. Brian, 19, Melissa, 17, and Rachel, 13, have made sacrifices, too many and too big to count, for their disabled sibling. One would think that this would have made them bitter and discontented. Amazingly, it has done exactly the opposite. They are thankful, giving, and tolerant to difficult and unlovely people. 
	Could it be that the special-needs, "imperfect" people have that balancing effect on society as a whole? How would love and compassion develop among people who were only surrounded by the lovely and intelligent? My children treasure nothing more than a smile or kiss, sometimes just eye contact, from their little brother. My nephew, who is a year younger than Michael, loves to help at his school with the class of students with special needs, or as he puts it, "the class like Michael." I see my husband kiss our son's often expressionless, crooked little face, and my heart nearly bursts with a love and joy that I can hardly contain.
	As I pondered this potential "perfect" society, one verse from the Bible kept coming to my mind: "Do nothing out of selfish ambition or vain conceit" (Phil. 2:3). Parenting a child with special needs makes living out this verse a little easier. This child becomes the focus of most of his parents' time and energy. An enormous amount of money may have to be spent on therapists, doctors, hospitals, and equipment. 
	He limits what dreams his parents can pursue. They grieve throughout his lifetime. They not only grieve the child they "lost" at his birth, but grieve as they see him struggle with tasks that normally come easy, grieve when he realizes that he is not like other children, and often when he is in physical or emotional pain. They have little room left for selfish ambition. What about vain conceit? That is likely to die, too. It's often embarrassing to have a child who cries out in public for no reason, looks different, and acts different. He won't be at the top of his class, won't be the best athlete, and will probably never be voted Most Beautiful or Most Likely to Succeed.                
	I wonder, if our advanced technologies successfully eliminate the weak and needy, will future scholars, theologians, politicians, and poets ponder: "Why has our society become less loving, so selfish, so intolerant, so uncommitted to anything outside of individual gain? Why are we so full of selfish ambition and vain conceit?" Is this "perfect" society a place where any of us would want to live?

Slightly abridged from "Speaking Out," copyright ©2005 "Christianity Today" (July 2005).


BALTIMORE CHURCH TAPING BLACK DEAF HISTORY 
By Mary Cahill

	In 1895 in Baltimore, the Rev. Daniel Moylan founded the oldest operational church for the deaf in the Methodist connection. Today, the story of that congregation continues -- on videotape.
	A leadership team led by the Rev. Peggy A. Johnson, pastor of Fulton-Siemers Christ Church of the Deaf in Baltimore, [videotaped] the faith stories of the older members of her congregation as a project on deaf black history.
	"There are many people in the church who cannot read or write," said Ms. Johnson. "Many read at a third grade level. A very small number read well. Very few of the members speak with their voices, one or two." Most use solely sign language, Ms. Johnson explained. "English just isn't their medium, but videotape is. They can see the signs and they love to tell their stories."
	Driving to a taping session, Ms. Johnson said that in her congregation, the young people are particularly uninformed about the older members' heritage and faith. She said she intends to use the videotape to help the youth gain an appreciation of the trials and struggles their elders have been through and how their faith in God sustained them. 
	"Where is their history?" Ms. Johnson asked. "No one has ever written it down. There is only one book in print on black deaf history." (Black and Deaf in America by Ernest Hairston and Linwood Smith.)
	"We are way behind in capturing the history of this community," Ms. Johnson said. "By having the church write the story would mean [sic] we would be taking the lead in the human rights issues that this presents...rather than following behind, as we often do."
	Ms. Johnson's car pulled up in the driveway of a ranch-style group eldercare home in Columbia, Md. Inside, Bessie Hall, 96, waited, dressed in an elegant three-piece black suit. She displayed a smile that outshined the bugle beads on her blouse.
	With camera rolling and lights beaming, team member Al Couthen, who has twice been president of National Black/Deaf Advocates, allowed his hands to begin the swift and graceful dance that is American Sign Language.	"How did you start coming to the church?" he signed. Ms. Hall's hands began the story as her niece interpreted aloud for the hearing members of the crew.
	"I was schooled by my [hearing] parents until I was 17," she signed. "Then I went to school at Overlea, a black school for the deaf. I was shy and awkward, but my husband, Thomas, got me to go to church and I learned to sign better. I joined the church in 1930, when Rev. Moylan was pastor. I enjoyed singing and signing in church. At first I was very nervous, but I began to sign more and more, and then I traveled with the choir. 
	"My husband, Thomas, was custodian at the church. He fixed things and painted. Long time ago, black deaf people sat on one side of the church and the whites sat on the opposite. When Louis Foxwell [the pastor succeeding Rev. Moylan at Christ Church of the Deaf] came, we sat everybody all together."
	Ms. Hall's story [was] one of about 20 planned interviews. The completed video [premiered] locally in January 2005, at the 100th anniversary celebration of the founding of the Whatcoat Mission for Colored Deaf, and at a celebration of Deaf African-American Heritage later in the year.
	The video [has] a voice-over narration for the hearing audience and a printed transcript. Because most deaf people live below the poverty line, the videotape [is being] distributed to Christ United Methodist Church of the Deaf members and United Methodists across the connection at a minimal cost. The United Methodist Commission on Archives and History, the United Methodist Board of Discipleship and the United Methodist Board of Global Ministries [have received] copies as well.
	There was a sense of urgency in Ms. Johnson's words as she described this project: "Our objective is to capture, while we still have them with us, the valuable faith histories of our African-American deaf seniors. Their words are encouragement and true discipleship for this younger generation of deaf people who seek to find faith and meaning in their life. Deaf people are a culture," she said. "Sometimes they have been an oppressed culture. The Body of Christ, to be whole, needs to include this community." 

Adapted from United Methodist News Service (March 12, 2004). Cahill writes for the UMConnection, the newspaper of the Baltimore-Washington Annual Conference of the United Methodist Church.


BE YOURSELF
By Henri Nouwen

	Often we want to be somewhere other than where we are, or even to be someone other than who we are. We tend to compare ourselves constantly with others and wonder why we are not as rich, as intelligent, as simple, as generous, or as saintly as they are. Such comparisons make us feel guilty, ashamed, or jealous. It is very important to realize that our vocation is hidden in where we are and who we are. We are unique human beings, each with a call to realize in life what nobody else can, and to realize it in the concrete context of the here and now.

From "Bread For The Journey," Harper (San Francisco: 1997).


"IF YOUR FAITH HAD BEEN STRONGER..." AND OTHER THINGS NOT TO SAY
By Kathy Sheetz

How often people repeat time-worn phrases with not a thought for the painful impact the words may have.... 

NOT to Say: "If your faith had been stronger, you would have been healed long ago."
SAY: "I don't know why this happened in your life. I really hurt for you."

NOT to Say: "If there is anything I can do, just let me know."
SAY: "I'm taking my son to the zoo. Would any of your children like to come with us?"

NOT to Say: "There's always somebody who's worse off. Just think about that man in this morning's newspaper!"
SAY: "You have experienced an incredible loss. I am so sorry."

NOT to Say: "God must have a reason for this tragedy happening to you and your family. But, God never gives us more than we can bear."
SAY: "It's hard to understand what God is doing in this. I will pray that you will feel God's sustaining love and comfort."
				      
From "That All May Worship: An Interfaith Welcome To Persons With Disabilities," ed. Ann Rose Davie & Ginny Thornburgh, copyright ©1992 NOD (Washington, D.C). 


HONOR ROLL OF APPRECIATION

We thank the following people or organizations whose gifts of time and/or money have made possible the publication and mailing of "Wings":

Linda Ahnell
Jill Halley
Margery Chapman
Allen & Virginia Clark
John Henker
Nell Hong
Fred & Jessie Fahnestock
Kathy Dickens
John & Catherine Bartoo
Rev. Ed Hoffman
Char Tarr
Roger & Judy Hicks
Alma Enyeart
Lila Lanham


WINGS:  A non-official, non-profit quarterly newsletter published for, by, and about United Methodist adults with disabling conditions


FOUNDER/EDITOR
COMPUTER LAYOUT/GRAPHIC DESIGN:  Jo D'Archangelis


Correspondence:  Send all correspondence -- including feedback, original writings, items from other sources, and changes of address -- to Jo D'Archangelis, Editor, at 
Mailing Address:  592 West Ammunition Road, Apt. 1, Fallbrook, CA 92028 
Telephone/Fax:  760-723-2668 (please call before faxing)  
E-Mail:  jodarlis@aol.com

E-Wings:  Two e-mail versions of "Wings" are available for those with vision impairments and computer "reading" devices, those who have difficulty handling paper and print pages, those who live outside the USA, and/or those who just prefer computer viewing: (1.) A strictly e-mail version in unformatted text without graphics, and (2.) A formatted version with color graphics available to those able to open attached files in MSPublisher 2000 format. E-mail Jo D'Archangelis at jodarlis@aol.com to request either, or both, of these versions. 

Wings Online:  Four issues of "Wings" -- Fall 2002, Winter 2003, Spring 2003, and Summer 2003 -- may be accessed in their entirety at www.cal-pac-ccdm.org/. Selected articles from back issues of "Wings" 1995-98 may be accessed at www.mariposa-ministry.org.

Donations:  Most of the funding for "Wings"' publication and mailing comes from reader donations. There are no subscription fees. If you think "Wings" is worth it, please make a check or money order payable to the "Fallbrook United Methodist Church" (or "FUMC") and mark it "Wings Newsletter." Mail it to the church address below.	                                                                             

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Church Address: Fallbrook United Methodist Church, 1844 Winterhaven Road, Fallbrook, CA 92028  
Church Telephone: 760-728-1472	 	       
Church Fax: 760-728-7433  
Church E-Mail: FUMC1887@tfb.com