Disability Ministries Committee logo using  stylized person standing and another seated in wheelchair whose arms form the horizontal arm of the cross between them.  Logo says Making the Rough Places Smooth - Removing Barriers Is. 40_4
A partner ministry under The General Commission on Religion and Race

Spring 2020         
Vol. 10, #1

Beth_ Kyle_ and Brad DeHoff dressed up and together at a formal banquet.
The face of one at risk for denial of health-care access


of the

United Methodist

 Disability Connection

Greetings in Christ! 

With amazing speed, we have entered a virtual world in which many of us are connected with our congregations every week for Bible Study and worship! One gift of these unprecedented times is that the changes that make our worship more inclusive can also serve to bring unchurched people into our circles. Churches can now provide access to worship for caregivers, shift workers, and others unable to worship on Sunday mornings. Those of us unable to leave our homes due to chemical sensitivity, chronic pain, or compromised immune systems can join the worship service and fellowship from the comfort of our homes. At the same time, we need to ask whether some of us have been left behind, and how we can ensure access to all.

This issue explores ways to make on-line offerings more inclusive.  Many of our members who live with their own or a family member's disability are fearful of what might happen should they or their loved one contract the COVID-19 virus. The second article introduces two such persons and offers ways to provide support and advocacy to ensure that everyone has equal access to health care. We lift up outreach that churches with disability ministries are offering to members who are struggling with changed routines and isolation. Finally, in times of stress and disorientation, persons with disabilities can teach new practices for accessing God and calming our souls. The final article teaches praying without words. Each article comes with a pdf action and resource sheet that you and your church can use to get started.

Deaconess Lynn Swedberg, Editor  
In This Issue
* Access to online worship and fellowship
* Advocating for equal health care rights
* Outreach with members with intellectual and developmental disabilities
* Praying without words
Quick Links
Access to online worship and fellowship 
Many articles about moving your worship service online have appeared overnight, but few address the accessibility concerns of members with disabilities. We have created an "Inclusive online worship and group participation tip sheet" to help you make your virtual worship and meetings as accessible as possible. Many measures will help people with a variety of access issues. For instance, describing actions and images will help someone who has low vision as well as anyone who lacks computer access and calls in on their telephone. Providing the order of worship ahead of time will help both the person who is blind and needs to use a refreshable Braille display as well as a member who is hard of hearing and benefits from having the visual input.
Livestreaming can be a godsend to many who can't make it to worship services on Sunday. The Rev. Dr. Eric Pridmore, chairperson of the Mississippi conference disability ministries committee, notes that people with significant visual loss are unable to drive and often lack reliable transportation. As a person who is blind, he has been able to successfully use several online platforms to reach his congregation, as long as someone ensures that camera is showing his face and not the ceiling!

Pastor Daryl Miller from the Michigan conference hasn't found the platforms difficult to use despite low vision. To reach his congregation he offers multiple options, including uploading and directly e-mailing video messages and MP3 audio files that he records with a Victor Reader stream device. He also uses a calling tree program to send an encouraging daily scripture, suggesting that members use it to help focus their prayers and meditation.

Rev. Leo Yates, Jr., liaison from the UM Committee on Deaf and Hard of Hearing Ministries (DHM) compiled the resource "Online and Virtual Gatherings: Inclusion for Deaf
Still shot of video clip with female pastor standing in front of an altar_ a captioning bar in the lower part of the screen_ and an inset box showing a sign language interpreter.
Video screen with captioning and ASL
and Hard-of-Hearing Members" to offer guidance for churches and for members who are Deaf or have hearing loss. In his article you will learn about different ways to include a sign language interpreter on the screen, utilize captioning, and hold accessible conference calls.  Leo also stresses the importance of providing documents and visuals that support the content of your worship or group session.  

Roy White, DHM member of the from the Baltimore-Washington conference, has patiently tried many apps and programs in order to access worship and small groups. Zoom shows all persons in attendance, leaving the American Sign Language interpreter screen so small that he cannot easily see the signs. Alternately the program defaults to the person who is speaking, with the same effect. The audio was not synchronized with the video, 
Carrie White with short white hair_ glasses_ and dangling bead earrings stands with her arm around seated Roy White_ in glasses and a red plaid shirt.  Both are smiling. A historic photo is in the background - a restaurant decoration.
Carrie and Roy White
making lip-reading difficult. He has tried using several speech-to-text programs along with the video, and found that there were often pauses or times when the app would freeze. He paired his Captioncall telephone access with several Zoom events, but the delay was significant enough that he could not keep up. He feels fortunate that there are so many possibilities, but frustrated that participating is still so difficult for himself and his wife, who also has a significant hearing loss. He knows he needs to be flexible, and to communicate about his needs and suggestions for improved access. 

DHM vice-president Bryan Branson tries to follow his PNW congregation's service using the automatically-generated captions on YouTube. Sometimes the captions just don't make sense! Tim Vermande, webmaster for both the DisAbility Ministries and Deaf and Hard of Hearing committees, has been monitoring worship services from across the connection. He has discovered that automatic closed captioning, while vastly improved in the last few years, only works well when the speaker talks directly into the microphone, and projects as one would do when addressing the congregation.

For further information, refer to the linked "Inclusive online worship and group participation" tip sheet.

Advocating for equal health care rights
If you are under 60 and don't live with a disability or chronic medical condition, you may not be aware that your friends and neighbors who fit these categories are fearful that they might not get the same level of medical attention that you would. Stories of rationing in other countries, and of overwhelmed ICU units, don't always provide the whole picture of who is and who isn't receiving the care they need.

Beth DeHoff, co-chair of the Indiana UMC Disability Advocacy Team, worries that her son Kyle will be denied care if he gets sick. Though only 20, he is immune- compromised after treatment for cancer. Kyle has Down syndrome and autism, and he
A selfie of Brad_ Kyle_ and Beth at a ball game. Kyle_ in a hoodie sweatshirt_ looks intensely toward the camera.
Brad, Kyle, and Beth DeHoff
cannot communicate verbally. In some states, these conditions would place him low on the list for admission to ICU and access to a ventilator when resources become scarce. Beth also wonders how his needs would be met because he is an adult and could not have visitors. Day-to-day life is impacted as well. Beth and her husband Brad find it difficult to work full-time from home when Kyle's school is closed and the couple needs to turn away assigned agency nurses who also work in high-risk settings and may carry the virus.

In Upper New York, Rev. Chris Wylie has similar concerns. Though not currently able to pastor a church, he stays active leading online Bible studies groups and writing blog articles. Typically, he also provides chaplaincy outreach to residents of nursing facilities.
Chris sits in his wheelchair_ wearing a black clerical robe and rainbow stole.  He wears glasses and has a moustache and graying beard. Rows of empty chairs are in the background.
Rev. Chris Wylie
Before NY state enacted a Stay-at-Home order he began a self-imposed isolation because he has an underlying medical condition in addition to cerebral palsy. Both conditions make him more vulnerable to potential life-threatening effects of COVID-19, should he become infected. The prospect of being hospitalized is doubly frightening because he fears that others who seem healthier would be selected if treatment resources are stretched thin.

These fears are not unfounded, as a plethora of articles reveal. One state's triage screening guidelines for use during a medical crisis list factors to consider before potential admission to the ICU. The factors to weigh include "baseline functional status (consider loss of reserves in energy, physical ability, cognition and general health)" and appear to discriminate against persons with disabilities. The directive further suggests that "If resources are inadequate, consider transferring [such] patients to outpatient or palliative care with appropriate resources and support as can be provided."

Such rationing is a product of ableism. Massachusetts attorney Robin Powell, who lives with a disability, explains ableism: "...believing that [people with disabilities] should just stay at home while others continue on with their lives is ableist-discriminatory or prejudiced against people with disabilities, perpetuated by a belief that disabled people are inferior to nondisabled people. Ableism takes many forms. On an individual level, ableism is attitudes, assumptions, or stereotypes about people with disabilities. Institutional ableism, conversely, is marked by systemic and pervasive policies and practices that negatively affect people with disabilities."

In response to discriminatory triage guidelines, the federal HHS Office for Civil Rights in Action issued a Bulletin in late March outlining the right of people with disabilities to equal access to health care. The wording strongly echoes the United Methodist Social Principles, which have long called for equality in health care. People accessing care may not know or be able to articulate their civil rights, and hospital staff may not have been briefed on the civil rights implications of making triage decisions based on a person's functional status.

Beth recommends that persons with disabilities and their families take a copy of the Bulletin with them when accessing health care, and not be afraid to pull it out as a self-advocacy tool. Churches and friends can come alongside individuals with disabilities to advocate for the right to medical care and more. See the linked toolkit: "Advocacy actions you and your church can take to ensure health care access during the COVID-19 health crisis" for concrete steps to take. Thanks to Beth for many of these suggestions. Article references and resources are also found in the document.
                                 Outreach with members with                                   intellectual and developmental disabilities
Structure and routine are important in the lives of many people with intellectual and developmental disabilities. Among people most impacted by the COVID-19 "Stay Home" mandates are individuals with autism, Down syndrome, and other developmental disabilities, and their families. Many thrive in church sponsored day programs or work in jobs now considered non-essential. Attending Sunday morning worship or a fellowship event with peers may be the highlight of the week, and that isn't possible right now. Anticipated church-sponsored community-wide prom dances have been cancelled for the year.

Churches can help fill the gap created by these closures. We reached out to churches with active disability ministries to learn how they are adapting their outreach to the new circumstances, hoping to gather ideas for the rest of us who don't have designated staff. 

The following churches offer broadcasts that anyone can access. Matthew's Ministry staff from the Church of the Resurrection in Kansas post daily devotions for their participants. The Believer's Garden worship service at University UMC in San Antonio is livestreamed at 10:00 Central time every Sunday. This is a lively worship service which typically includes a praise band and attracts many young adults who live in supported community settings. Past worship services are archived for your viewing. The Belong Disability Ministry channel of Highland Park UMC in Dallas offers weekly worship messages from Rev. Ramsey Patton, a worship sing-along video, and Sunday School messages from Christian education coordinator Karen Gilmore. 

Churches that do not have specialized worship services may find that livestreaming offers a chance to do things differently. Worship leaders can incorporate more multi-sensory, whole body worship ideas. It can be fun to shake a maraca, wave a streamer, sway, or even get up and dance to the music when no one but your family is watching. Those of us who have trouble concentrating may do so more readily while coloring a picture that
Home altar with matchstick cross_ battery candle_ bouquet of grape hyacinth flowers_ open Bible_ stone_ rolled white cloth_ crafted angel_ and photo taken from inside an empty tomb with three crosses silouhetted in the sunrise.
Example of a home worship altar
illustrates the scripture. Encourage families to set up a home altar which provides a focus point for worship and prayer. 

Most of the disability ministries broadcast frequent video messages to participants. While these are available for anyone to watch, the impact may be stronger if someone familiar sends a message to your congregation. You don't need multiple messages for different groups as long as you stick to Plain Language principles: use shorter sentences, shorter and familiar words, and content of interest to adults of all abilities. Visual props and images (explained for people who cannot see them) make the message more engaging for everyone! 
Susan Galindo from University writes a weekly outreach newsletter. The issues contain a devotional message, a scripture with a related coloring page, jokes, and a challenge. The challenge for one week was to make a cross out of materials found at home, then send a picture of the cross to share with the group. Jennifer Ross of Matthew's Ministry mails crafts and activities to day program participants. In addition to a newsletter, Karen Gilmore and the staff at Highland Park offer their members virtual day classes including art, Bible journaling, yoga, and breathing.
All ministries indicated that personal contact was an important part of their outreach. The coordinators make weekly calls to participants, parents, volunteers, and furloughed staff.
white text on black background that reads_ _TALK-O TUESDAYS_ _What can we say_ the physical distancing is really bringing out the puns_ Each week anyone from our community who wants to will be given the name of someone else _at random_ to check in on _like to talk to...verbally or not_and maybe on a Tuesday_get it__ __ And then someone else will also reach out to you_ You might do one _or more_ of the following_ -Make a drawing or piece of art for them_ take a pic of it_ send it over -Call on the phone to check in -Send a message via social media to find out how they_re doing -Message a picture of yourself waving and smiling at them -Find out how you can be praying for them this week -Ask if they need help with anything tangible _groceries_ errands_ etc._ - let us know if you need help meeting that need_
Instructions for Talk-O Tuesdays
Zach Grant from St. James UMC in Tampa includes participants in the "Talk-o Tuesdays" outreach, an idea borrowed from Beloved Everybody Church in California. Members who want to participate receive a name to contact during the week, and hear from another person. The names rotate weekly. 
The COVID-19 crisis gives churches an opportunity to increase their outreach. Many people with and without disabilities are hungry for spiritual resources. This is a chance to reach out without the usual barriers of transportation or reluctance to enter a church building. Your participants' friends and family members may need a reassuring phone call but not be receiving this kind of support. Let people in your community know about your ministries and how they can access them.

An important component of outreach is providing accessible information about the pandemic, e.g. why participants need to stay home, and how to stay safe. Several organizations have compiled information in pictures and simple English, some using the "social story" format that helps teach new concepts. Please share these resources (see link below) with families and individuals who may benefit.

Links, resources, and additional ideas are found in Resource sheets for " Outreach with members with intellectual and developmental disabilities" and " Accessible COVID-19 information."
Praying without words
Rev. Donna Fado Ivery knows what it is like to live in isolation, cut off from the outside world. After a head injury 26 years ago limited her energy and took away many of her roles and abilities, she sought ways to stay connected with God. The Holy Spirit opened Photo of Donna  in blue dress_ wearing glasses_ smiling toher a new way of praying through painting, through a process that has much value for these difficult times.

All of us are facing new struggles and limits. It can be difficult to put words to our prayers of yearning or frustration. Romans 8:26 gives us hope: "Likewise the Spirit helps us in our weakness; for we do not know how to pray as we ought, but that very Spirit intercedes with sighs too deep for words." Donna found this text empowering as she experienced answers to prayers through what she calls the "brushes of the Spirit."

When longing for an answer to a spoken or unarticulated prayer, Donna has learned to first center herself so she is open to the Spirit's nudging. She says that breath work always precedes the creative process and brings her into dialogue with the Breath of God. Slowing her breath down she breathes out worry, breathes in peace. She exhales pain, inhales calm or light. She breathes out frustration or stress, breathes in peace or comfort. When she stops focusing on the negative parts of her experience, she finds access to God. At that point the Spirit often reveals an image through which she can express whatever it is that she needs to surrender to God.

Paintings help her visualize her chronic pain and see its purpose in expressing her need for help. The Spirit helps her understand through the colors she is inspired to select and the textures she uses. Frequently she sees new images within a painting when she views it the next day. As she contemplates each work over time, she is led to write a poem interpreting the painting's meaning.

Over time Donna's endurance and focus have improved. This enables her to preach occasionally, mostly within the California-Nevada Conference where she is a member. She shares what God has taught her about the process of healing through painting. After Book cover with book title_ painting on silk_ and badge for being an award winner in a Writer_s Digest writing contest spending several years writing, she published Sleep, Pray, Heal: A Path to Wholeness and Well-Being in 2019, through which she tells her story. Donna also leads retreats and groups in painting prayers. The point of the painting is not to be artistic, but rather to allow the Spirit to bring forth one's prayers on the canvas, silk, or paper.

Donna hopes to start a Zoom prayer group where members paint instead of verbalize their prayers - perfect for people who want to be involved with others but don't fit well in a conversation-based group. If painting seems too difficult, Donna suggests making a collage from trash, e.g. words or photos from old magazines. Even finding one photo that speaks to us and discerning the message that God has for us can be a powerful experience!

Painting or drawing our prayers helps when words get in the way of connecting with God, and when we struggle to use words. In this stressful era, we can use some of the time and space of isolation to reach out to God through the arts. See the Praying without Words Resource Sheet to learn about other ways to pray without words, including means such as prayer beads, music, and movement. The Spirit guides us through diverse paths to bring us to wholeness and oneness with God. No words are required.
Blessings on your journey into this uncharted world of virtual encounters.  Keep up with our latest findings on our webpage "Coronavirus Resources for Churches." Please let us know what you are doing to ensure access and inclusion for your members.

DisAbility Ministries Committee of The United Methodist Church