Segregated Schools by Linda Wright

When Simmons College in Boston asked for a detailed medical history to be submitted with my application to study for a masters degree in Library Science, I was suspicious. I had worked as a librarian for two years, and my letters of recommendation from my supervisor and the director of the library stated my work had been impeccable. I took the form to my hematologist.

“This is none of their business,” he said flatly and scribbled his signature under an illegible note at the bottom of the form.

My mistrust came from experience with every education application I had made from Kindergarten to college and now graduate school.

As a child, I was luckier than several of my friends. It was the mid-1950’s and there was no legal requirement to educate any child with a disability. Carol, who had cerebral palsy, was not allowed to go to public school. Neither was Barbara, who had been born with Down’s syndrome. Rose had to go to a special boarding school for children who were blind. I had been born with a bleeding disorder.

The Principal of the local elementary school did not want to enroll me, explaining to my mother that it was not a safe place for me. Anticipating this response, my mother presented a doctor’s letter certifying that, despite my bleeding disorder, there was no medical reason to exclude me.

The letter from my doctor did not reassure the Principal, and she admitted me on the condition that, during recess each day, I sit on the bench just outside her office door with the naughty children. It was unreasonable and unnecessary. My sentence on the bench lasted seven years. It was enforced when the other children went outside to play and even when they were indoors during recess.

I began filling out application forms to colleges in my junior year. Each rejection letter explained that their campus was not accessible. In the library I found a directory, which listed Boston University as having accessible classrooms and dormitory facilities. I applied and received a letter of acceptance in an envelope bulging with forms and instructions.

Enclosed in the envelope was a note asking me to schedule a meeting with the housing office. By then, I had been fitted with a leg brace. The metal supports squeaked against my leather shoes when I sat down in front of the placement officer.

The woman’s eyes did not meet mine. She stared at the orthopedic shoes I was wearing and the aluminum brace. Not long into our conversation, she released a heavy sigh and said, "Well, you can come to this school, but I doubt anyone will want to be your roommate."

My self-esteem was as bruised as my skin, but I was not broken. So I shrugged and thought to myself, “That’s your problem, isn’t it?”

Boston University had accepted me only because they did not know I had a disability.

Thanks to my doctors terse note on the medical form, I was also accepted to Simmons College. While I was a student, I volunteered to be the student representative on the team that reviewed the admissions policies. The College was preparing for re-accreditation by the American Library Association.

“Why are there no people of color enrolled in the School of Library Science?” I asked.

“We don’t discriminate, based on race,” she said, “It’s just that we don’t accept anyone who went to a state college, and well, you know, that rules out a lot of people. Besides, black people don’t want to be librarians, they are looking for better paying jobs.”

“There are several students from China in my classes, but no one from a Spanish speaking country,” I said.

“Well,” she responded, sounding as if her patience was strained, “Chinese people are more literate and their culture values education.”

I flinched and checked off the box on my survey form that said ‘yes’ beside the Admission Policy Discriminates on the basis of race.

“Why do you require a medical history form?”

The admissions officer glanced at me and responded, “Well, we don’t want people to associate librarians with cripples, do we?”

Coping with Crossflow in Congregational Politics by Roger Christan Schriner

A few months ago, I posted about using the analogy of traffic “crossflow,” to change our thinking about the process of gaining full inclusion in our congregations. In driving from point A to point B, we need to cope with crossflow -- traffic flowing from the opposite direction and from either side. If we acknowledge that we’ll need to deal with these impediments, we are less likely to become frustrated.

Encouraging a UU congregation to become more accessible is a journey from point A, the status quo, to point B, fully equal access. The question is not, “Will there be crossflow,” but “How shall I cope with inevitable glitches and obstacles? Here are some suggestions about dealing with institutional issues and power dynamics in promoting equal access:

1. Be realistic about how long it will take to get from A to B. Is this a congregation that usually moves quickly or slowly? Is leadership pro-active or passive? Clearly focused or distracted and confused? Is change typically welcomed or resisted?

2. Identify individual(s) or group(s) resisting your initiative. Is it possible that most people agree with you, but are passively acquiescing to the objections of a vocal minority? If so, how could you encourage those silent voices to speak up? Who could help you mobilize those who have been passive?

3. Are people in favor of your general idea but unclear about how to proceed? Give them two or three specific alternatives to consider.

Notice that I deliberately used the hated word, “politics” in titling this article. Politics has gotten a bad rap because our government has become so dysfunctional, but I still remember my political science teacher’s comment that “politics is the art of the possible.” It is the art of making decisions in groups, blending diverse interests and opinions to achieve common goals. In this sense, congregations are political organizations, and congregational leaders must be good politicians.

Although congregational decision-making can be a rather cumbersome process, I believe that our little corner of the universe tends to “bend toward justice.” But justice seldom materializes without effort. It takes time, energy, and creativity, coping with crossflow.

Charting One’s Own Spiritual Path

While much of the attention has waned recently, for many years in the field of disabilities, the hot topic of conversation was the concept of self-determination. Simply put, self-determination is a philosophy and a practice which holds that people with disabilities have the right to make choices and the freedom to seek the same goals that all others have related to personal relationships, membership in the community, and establishing an economic and spiritual future. In other words, people with disabilities have the right to make the kinds of choices and decisions that determine for them the highest quality of life. In many community homes throughout our country, where people with cognitive disabilities share space, resources, and staff, promoting a “spiritual future” is an afterthought. Direct care workers rarely ask the question or explore the individual’s religious background, and if a supported individual does attend religious services, it is usually at the church, synagogue or mosque that the staff person belongs to.


Creating the opportunity for people with cognitive disabilities to explore their own spirituality has great benefit in a number of ways. It may help to reconnect the individual with an important part of their past when they did attend religious services with parents or other family members. It provides a haven for people who are often ostracized from others to gain full acceptance for who they are and what they offer to the world. And it can open up numerous avenues for relationship-building and the sense of true belonging in a larger, loving community.

What a great opportunity for Unitarian Universalists to demonstrate their commitment to diversity and inclusion!! Our congregations should be reaching out to local human service agencies that provide various services to people with cognitive disabilities. Forming partnerships with them will not only bring the promise of spirituality to those who desire it, but it increases the visibility of the congregation in the community which, in turn, serves to bring more people to its doors.

Thus, opening our doors to those with cognitive disabilities is not only the right thing to do. It is also an investment in the congregation’s future. If you find this idea intriguing for your congregation, contact me at mbernstein@uua.org.

With respect,

Mark Bernstein
Regional Growth Development Director, CERG
UUA Liaison to Issues in Accessibility/Disability

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.