Cumulative Effect by Barbara Ceconi

Dressed for work, I am rapidly walking down the street with my guide dog, on my way to facilitate a training session. I worry, as always, that the mass transit will be late. While walking, I am deep in thought on the subject matter of the day’s session.

Suddenly a man stops me. “Do you know where you are?” he asks.

I jerk myself from my thoughts, momentarily confused by the sudden interruption. Of course I know where I am and where I am going. What sort of question is that? Stunned, I look at my dog and respond, “Toto, we’re not in Kansas anymore?” I walk away shaking my head, annoyed by the interruption.

I run into a convenience store to buy some mints. The clerk rings up a few orders and I hear no one else in line. “Could you get me some wintergreen Tic Tacks please?” I query. “On the left,” he responds, apparently not looking up. The boxes are recognizable by shape, but not the flavors. I ask him again, explaining that I am blind. With a surprised, “Oh,” he leans over the counter and grabs a pack for me.

I am nearly at the subway station. Without a word, someone grabs my arm and drags me across the street. I struggle to pull my arm away from this stranger. “What are you doing?” I sputter. “I was just trying to help. Sorry.” The person walks away. Since the experience was disorienting on several levels, I now have no idea what corner I have been deposited on. I ask passersby where I am. “On the corner of Harvard and Beacon,” answers someone. It’s a four-way intersection, so that doesn’t situate me. I wait for someone else to pass. “Excuse me, what store am I in front of?” No response. Wait for the next person. “Can you tell me where the bank is?" hoping for information so that I can puzzle out my position. I feel frustrated and angry that others think they know what I need better than me.

After I receive the direction, I walk, reoriented, towards the subway stop. Once aboard, a pleasant woman offers me her seat. I respond with a curt, “No.”

My response was sharp and out of line. After the string of incidents, I am in no mood to be gracious. This well-intentioned woman, must have been shocked by the hostile intonation of my voice, and justifiably so. Others near her could have been as well. Interactions like these can cause people to jump to the conclusion that people who are disabled are angry. Normally, I would have thanked the woman and smiled. I snapped at her because of the accumulated frustration. I experienced during my brief walk. And those emotions landed on her. This is known as cumulative effect.

Cumulative effect occurs frequently with people who are discounted over and over again. Unfortunately, the individual who experiences such recurring incidents draws a conclusion: it is due to my difference, in my case, my blindness.

Growing From Within

Growth comes in so many different forms, and sometimes when we least expect it. As we build a sense of community in our congregations, we develop deeper and more meaningful relationships with our fellow members. We grow internally through the inspiration, courage, optimism and faith of those around us. We learn to be open to what others have to teach us and, in so doing, we become wiser, more compassionate and more committed to our wonderful Unitarian Universalist faith.

Let me tell you about my friend Leah. I met her at General Assembly in Charlotte this past June. Leah is a bright, enthusiastic and engaging young woman who recently turned 16. She lives in Wisconsin and is a life long member of First Unitarian Society of Madison. Leah also has cerebral palsy and a cortical visual impairment which requires that she use her peripheral vision to see people and objects. During the school year, Leah attends the Wisconsin School for the Blind in Janesville, Wisconsin.

Perhaps her greatest passion, in addition to her family of course, is participating as a member of the Scouts. This past month, Leah attended the World Scout Jamboree in Sweden. She told me that there were 40,000 scouts in attendance from 146 countries (and only two scouts who used wheelchairs, one of which was Leah!). She told me that she engaged in every activity during the Jamboree including the obstacle course, with, as she admits, “a little bit of enthusiastic help.” She also got to do something that few others had the chance to do. She met and talked with the King of Sweden who was attending the Jamboree as well. Leah told me that she traded shirts with girls from Portugal and Bangladesh; exchanged presents with troops from Malawi, Mauritius, Ghana and Kenya, and met a five year old boy from Sweden who also used a wheelchair, advising him that Scouts is “for everyone. Not just people who can walk.”

Back at home, Leah is working on a project to earn her Girl Scout Gold Award. She is creating a page on her congregation’s web site expressly for visitors and members with special needs. It offers instructions on how to navigate the building, advises which areas are accessible and not accessible, and addresses the needs of children with special needs and people with physical limitations, chemical sensitivities, and mental health issues. It is quite a piece of work and serves as testament not only to Leah’s commitment to people with differing abilities, but that of the Madison congregation as well. The page is in its final draft form now and should be going live in the next few weeks.

When I asked Leah what she likes most about being a Unitarian Universalist, she said, “taking the Coming of Age class to learn more about myself and our church.” She enjoys the church school programming and the efforts of her congregation to make her a “regular part of the activities.” For the presentation of her Coming of Age faith statement, Leah recorded it sentence by sentence and sat proudly as her teachers played the recording during the service. Leah’s advice to other Unitarian Universalists with special needs? “The person is first and the disability is second.”

As Unitarian Universalists, we grow… one relationship at a time. We receive from one another and we give back. We share together our hopes and dreams, our disappointments and our challenges. And by this, we live. Thanks Leah, and Lori, the Faithful Scribe, for helping me to grow. As far as I’m concerned, Leah, you’ve already earned that Gold Award.

Mark Bernstein
CERG Growth Development Consultant and UUA Liaison to Issues in Accessibility and Disability

Including Complex Children By Kate Ryan

I’m reading Sally Patton’s excellent book, Welcoming Children with Special Needs: a guidebook for faith communities, and as good as the book is, I can’t help but think that my kids aren’t in there. ‘My’ kids being the kids I work with, the fragile, very-medically-involved, severely-delayed kids. So I thought I would write a little primer on how to welcome them.

Life with a child with special needs, as anyone knows, can be very difficult. But some disabilities are more difficult than others. Rare syndromes, diseases and chromosomal abnormalities often lead to children who are severely disabled and medically fragile. We’ll call them ‘complex’ kids. Below, I offer some suggestions on how to welcome complex kids to your church and make their families feel at home.

First of all, don’t be afraid. These kids can look somewhat frightening at first. They may be very small for their age and very skinny, or have faces and bodies that do not look like the faces and bodies you are used to. They may make strange noises or cries. They may be hooked up to all sorts of fancy machines. But unless their parents/caregivers are telling you to call 911, the kid is probably fine, and you should welcome them just as you would any other family, with a generous heart and an open mind.

Staring is rude, we all know that, but so is making comments like ‘he’s small for his age, isn’t he?’ The family has heard all of it before. Inquire gently about the child’s condition on a need-to-know basis, and trust that the family will tell you more if they need to. Don’t expect the parents to be a talking encyclopedia – when they say their child has Cornelia de Lange syndrome, just Google it later and spend your time connecting with the family, not questioning.

Offer assistance, trying to anticipate what might be helpful and remember to ask before making assumptions about what the child or the parent needs. It can be awkward to always have to ask, and many parents get used to doing everything themselves and not asking for help. Taking care of complex children is a 24-hour job, and going to church should provide a break for the parents, and a chance to replenish their soul.

Start with the physical needs. If your church isn’t accessible, figure out how to carry a wheelchair up the steps. Provide a place in the pews for a wheelchair or for a child to sit on the floor, if that is what s/he prefers. And this may seem small, but it is actually a big one – provide a place to change the diaper of a person older than two. Many times families have to resort to the back of their car, which can be very hard to maneuver in.

Children with complex needs may eat a chopped or pureed diet. They often need to be fed, or may rely on a feeding tube. It is not hard to feed anybody, so at coffee hour it would be nice to do so if the parent is okay with it.

One thing that I have noticed about ‘regular’ kids is that they can go anywhere without much equipment. Complex children do not have this advantage. They often tote around huge bags filled with emergency supplies. Ask if it would be helpful if the church could set aside a spare cupboard or closet, where the child could put a box with some supplies that the parent provides so that they do not have to bring everything to church and back every Sunday.

Ask the parents what they want their child to get out of church. Some children might be best sitting in the sanctuary with their parents for the service, if they truly would not be able to participate in the children’s activities. Others could participate with a helper.

Accommodations for a complex child in RE would be the same as for any other child with special needs, and I refer to Pattons’ book, specifically the chapter on intellectual disabilities and physical disabilities.

Some complex children understand everything you say. Others are so brain-damaged that they understand little. All, however, will understand tone of voice (unless they cannot hear) and attitudes towards them, as will the family. Families with complex children are used to being stared at and treated rudely, so it is important to treat them with dignity and respect, and acknowledge that they are doing the best for their child and that they know what is best. Ask them the best way to communicate with their child, whether through pictures, signs or talking. All children communicate in some way, even if it is just through smiles and laughter.

Families of children with lissencephaly, mitochrondial disease, osteogenesis imperfecta, deaf-blindness and a host of other conditions live in a world that is very hard for the ordinary person to imagine. It is a world filled with small sorrows and small, hard-won victories. Where a good day means one with just five seizures, not ten, and where a smile is worth more than a pot of gold. By welcoming these families and their children, UU’s can lessen their sorrows and increase their joys.

Complex Children E-Magazine offers more information.

GA 2012 Update by Suzanne Fast

The deadline for submitting program proposals has been extended until November 30. Please leave a comment below if you are interested in working on developing or presenting Equual Access sponsored programs.

Some people fall in love with General Assembly; I'm one of them. The hurrying crowds, the chance conversations, feeling connected to a tradition so much larger than myself. It has it's down side (over-scheduling, elevator issues, and getting bumped on the head by a million backpacks just to name a few), but I look forward to those few days of being with thousands of Unitarian Universalists. For me, it is both exhausting and revitalizing at the same time.

As GA coordinator for Equual Access, I continue to advocate for improving General Assembly by building awareness of inclusion and accessibility in the planning process. General Assembly is only a small part of the work of creating change. But in those few days, many people can be reached and many connections established. To do this effectively, it takes more than just me and our Board and our Standing Committees -- please consider becoming involved in our GA planning and preparations.