Blazing Trails

Samuel G. Howe

It will come as no surprise that many Unitarian Universalists have been instrumental throughout history in advancing the cause of people with varying abilities. Some of the names are better known: Dorothea Dix and Samuel G. Howe who, among other accomplishments, established the Perkins School for the Blind in Boston and was recognized as the country’s leading expert on the subject.  Others are lesser known, but no less important in raising consciousness, improving services, and gaining greater acceptance of people with disabilities in society.

While some of his techniques may have been suspect (he was a great proponent of bloodletting to cure ills, for example), Benjamin Rush was a pioneer in the study and treatment of mental illness.  Rebuffed when he protested the inhuman treatment of people with mental illness at Pennsylvania Hospital, he obtained state funding to create a ward for the “insane” at that facility and began a practice that revolutionized the way we think of people with mental illness.  In 1812, he wrote the book Medical Inquiries and Observations, Upon the Diseases of the Mind, which was a standard reference for seventy years and earned him the title of “the father of American psychiatry.”

Dr. Martha May Eliot was a leader in the development of health services for mothers and children.  While on staff at the Department of Pediatrics at Yale, Dr. Eliot helped to develop the Division of Child Hygiene and collaborated in the drafting of the first Maternity and Infancy Act which required states to extend and improve services for mothers and children and for “handicapped” children.  In her report to Congress in the mid-1950’s, Dr. Eliot identified children with mental retardation as a program priority.  Largely through her initiatives, by 1955, services for people with mental retardation were a priority within the federal government.  Since 1964, the American Public Health Association has awarded the Martha May Eliot Award to deserving individuals who have provided extraordinary health services to mothers and children.

T. Berry Brazelton, M.D. has a long and distinguished history in the field of primary care pediatrics and child psychiatry.  An author of more than 200 scientific papers and chapters, Dr. Brazelton has been influential in advocating the importance of early intervention to at-risk infants and their families.  Among other honors, he was appointed in 1989 to the National Commission on Children by the U.S. Congress, where he advocated for better services to disadvantaged children.  His Neonatal Behavioral Assessment Scale is used worldwide to assess the physical and neurological responses of newborns as well as their emotional well-being and individual differences.

These are just a few of the stories of Unitarian Universalists living out our faith in word and in deed…and helping to make the world a better place for people of all abilities.

Embracing the Child in Our Beloved Communities

Through the financial support of the UUA, the author and educator Sally Patton has been offering workshops on creating welcoming ministries for all families that want to attend our Unitarian Universalist Congregations. Entitled Involve, the workshop is designed to train religious educators, ministers and lay leaders to minister to children with different ways of learning, being and knowing and insure their successful inclusion into congregational life. So far this year, Sally has presented her workshop in the San Francisco area and in Westchester County, north of New York City. On May 19th, Sally will be at the Unitarian Universalist Church of West Chester, a suburb of Philadelphia. For those in that area, registration will be open until May 17th. For more information, contact Mark Bernstein, CERG Growth Consultant at mbernstein@uua.org. For more information about Sally, log on to her website at www.embracechildspirit.org.

Honoring Dorothea Dix - Reformer, Humanitarian, Unitarian

During the month of April the Equual Access featured discussion topic is Unitarian Universalist History with Accessibility and Inclusion. Since Dorothea Dix was born on April 4, it seems particularly fitting that we begin with a story about her and her work. Her life is featured on the Disability History Museum and her biography there reminds readers that, "Dix did not truly discover her life’s work until she was almost forty years old. She did not become a leader in the asylum movement until she herself experienced a debilitating bout of depression and physical illness in 1836."

The Tapestry of Faith Windows and Mirrors curriculum for grades 4-5 includes the life story of Dorothea Dix:

"Dorothea Dix lived in the 1800s. At a time when women had fewer choices than men did, Dorothea made extraordinary choices for herself. She did not grow up a Unitarian, but she chose to become one as an adult. Another choice she made was to work hard on behalf of other people.

Dorothea made one of the most important contributions to our society by helping to create hospitals for people with mental illness. In her time, there were no hospitals for people with mental problems. People who acted strange or could not communicate because they had difficulty thinking and interacting the same way most others did, were kept in prisons. Often they were chained and given very little clothing. So what if it was cold in the prison? Nobody cared whether these people were cold. Most people thought people with mental illness did not get cold or feel pain. In fact, many people thought that those with mental illness were not fully human at all.

.... Dorothea deeply valued the right to make one's own choices. She trusted her own choices about the right way to live her life. One of her choices was to become a Unitarian. Another was to work to help people with mental illness in ways they were not able to help themselves. She understood they were people whose right to make their own choices had been taken away. She helped everyone understand that people with mental illness are people like us, who deserve dignity and respect."

What's In a Word? by Carolyn Cartland, Vice President of Equual Access

Carolyn Cartland

When the Equual Access board chose the monthly theme for March a few months ago, we didn’t know how appropriate it would be. The March theme we selected, “What’s in a Word? Do the Words We Use Matter?”, is an apt description of the discussion now taking place on the “Standing on the Side of Love” blog. You may have seen it; if not, I recommend it. We are all invited to comment on whether the use of the word “standing” may be alienating to people with disabilities, how this issue may be impacting folks in our communities, and how ableism has affected our lives. I encourage everyone to make their opinions known below, on the Equual Access blog or on Access-l, the UU open forum for people who are interested in matters relating to accessibility. You are invited to join others who are committed to creating a faith community in which all people are truly welcomed into all aspects of congregational life. for UU. To view the sermon which initiated this conversation, go to the sermons web page for the Unitarian Society of Hartford, Connecticut and click on "2-12-12 Standing on the Side of Love - Rev. Katie Lee Crane."

At the Equual Access board meeting on March 7, we discussed this topic. We decided that words do matter to us, that words can change behavior and open minds, and that certain language presents opportunities to increase awareness of “the other” while other uses of language can limit understanding of others’ experiences. We understand that, initially, it may seem as though we are being “nit-picky”, “politically correct”, or “overly sensitive”. We are sympathetic to that perspective but weren’t those same comments made when women first objected to the sole use of the pronoun “he” in UU hymns, readings, and sermons? Weren’t similar comments made when the GBLTQ community objected to words that they deemed offensive? Who gets to decide if a word is offensive or not…the person offended or the person using the word? How do we show our belief in the “inherent worth and dignity of every person” if not by the language we use?

At our board meeting, we decided to pursue this conversation. We believe it is a valuable one for all of us, those with disabilities and those without, because at the very least it may open minds and hearts by providing a different perspective on the experiences of those whose lives are different from our own. Ableism, like sexism, heterosexism, racism, ageism, and all other forms of oppression, is alive and real in our culture; as in all forms of oppression, language is one of its most powerful tools. We encourage everyone to use this powerful tool in ways that are respectful, inclusive, and constructive. Whether SSL ultimately chooses to remove the word "standing" from the name of this social justice campaign or not, we believe this dialogue is necessary for the campaign to be inclusive and respectful of all people.

Living on the Side of Love - whether we stand, sit, or recline on a stretcher

Carolyn Cartland

When I learned on February 10 that our consulting minister at the Unitarian Society of Hartford, Connecticut, Rev. Katie Lee Crane, was going to deliver a sermon supporting the Standing on the Side of Love campaign the next Sunday, I sent her the following email:

“I am vice president of a national UU group called Equual Access. We formed five    
years ago and work to educate the UUA, congregations, and the world about inclusion of people with disabilities into congregational life, accessibility, and disability rights.

After the Standing on the Side of Love campaign was introduced at General Assembly in 2009, some of us in Equual Access and the disability community within the UUA were disappointed with the name chosen. Language matters, words matter, and those of us who cannot stand felt those words discounted our experience and reinforced the notion that there is something inherently “normal,” “natural,” and “strongly positive” about the notion of “standing”… which, of course, there is not.

One can be “normal,” “natural,” and “strongly positive” while sitting in a wheelchair, using a walker, or employing crutches to move through the world. One can demonstrate commitment, loyalty, and devotion to a cause without “standing.”

In September 2009, a few of us met with some of the leaders in the campaign and in the social justice area of the UUA; we discussed the issue, registered our concern, and requested a name change or a public recognition of the difficulty of the connotation of the words. We also expressed concern that their anti-oppression programs and plans do not specifically include combating ableism, which, for many of us, is as serious a social justice concern as (and overlaps with) racism, homophobia, gender discrimination, ageism, and economic oppression, areas upon which the UUA does specifically focus in the public arena.

Equual Access receives exceptionally strong support (staff, financial, and otherwise) from Mark Bernstein and Teresa Cooley in Congregational Life; we would not be able to do some of the things we have planned without their commitment to our goals. We, also, have good communications/relationship with Taquiena Boston and Janice Marie Johnson in the office of Multicultural Faith and Witness; we have begun to share information and priorities. We know our issues span both organizations while believing that they deserve more public focus from the UUA’s social justice folks. We are working hard to make that happen.

So, for me, the campaign to “stand on the side of love” causes both pain and pride. Words matter. I would feel more included if we were all “living on the side of love”. Those words, like the words we use in our service…”please rise in body and/or spirit”…are meaningful, inclusive, and respectful of everyone; they epitomize our belief in the inherent worth and dignity of everyone.

Without meaning to be presumptuous, I hope that you can reflect some of these ideas in your sermon as you encourage us to love our neighbor, whether we stand, sit, or recline on a stretcher.”

Rev. Crane responded enthusiastically and incorporated my comments into her sermon. She closed her sermon with the following: “I couldn’t have said it better myself. Why? Because I missed how those six little words meant to rally all of us ignored the identities of some of us. I missed it completely. And I am indebted to Carolyn for bringing it to my and our attention this morning. Now when we wear the orange shirts or wave the already-printed signs, we must also remember that we are also rallying to educate ourselves and others about ableism, too. Now we will join with Carolyn and others to register our concern, and request a name change or, at least, request that the folks leading this campaign tell the stories of those who are living on the side of love with or without the use of legs or feet.

I pledge to say just that to the folks in Boston this week.”

Rev. Crane sent her sermon to Dan Furmansky, manager of the SSL campaign, offered to travel to Boston to speak with the SSL folks personally, and suggested that they contact me to highlight this issue on their website. She received a response from Dan, who said, “I will give some thought on how to lift up the ableism issue. ..Your sermon is wonderful and I'm going to share it on our 30 Days round-up.”

I sent the email to Rev. Crane as an individual congregant, not as vice-president of EA. As we all know, this is a complex issue and many of us have different perspectives on it. Equual Access has not taken an official position on the name of the campaign and I do not know if we will. I do think it is important that the larger issue is discussed, namely that disability rights and inclusion of people with disabilities becomes an implicit part of the UUA’s social justice efforts. The topic is on the agenda for our next board meeting on March 7. All meetings of the Equual Access Board are open -- contact info@equualaccess.org in advance for the details.
In the meantime, I am excited that a conversation has begun and that Dan Furmansky has responded positively. For me, that’s the true meaning of living on the side of love.

Carolyn Cartland

Amazing Gifts - A Book Review

Faith communities love stories, particularly stories of success. Teachers, preachers, advocates, administrators tell and retell stories of faithful struggle and faithful achievement to inspire us, to instruct us in what is possible, to invite us further on our own faithful journeys as individuals, families, and faith communities. Mark Pinsky has collected a volume of such faithful stories about disability and full inclusion from Christian, Jewish, Muslim, Hindu, and Unitarian Universalist communities and families.

"Many religious interpretations, cultures, and personal beliefs hold onto the hope that everything would be perfect if people would just become perfect. No one wants to believe that it's really out of our control. Trials are for spiritual purification, and the Koran states that no one can attest that they are believers without that faith being tried. But God does not curse people with diseases because they or their loved ones are 'bad.' Islamic liturgy doesn't refer to disabilities in this way." - Laila, "The Right to Kindness and Charity" in Amazing Gifts

Amazing Gifts is structured with three sections of stories, defined by who is telling the story: Empowering People and Congregations, Ministry by People with Disabilities, and Family Members in Ministry. Each section may be read and studied on its own, but together they invite us all into imagining a radically inclusive world of transforming love.

"Let us take a hard look as Jews and see who is not in our midst. Who is not sitting next to us in a synagogue service or a Jewish community event because they have no way of getting there?...Who cannot read our prayer books because synagogues have not purchased large print or Braille prayer books? Who cannot hear our lessons, meetings, or sermons without special equipment or an ASL interpreter? Who is not participating in a family simcha because they cannot get up to the bimah..." - Rabbi Lynne Landsberg

Small groups could easily pursue one section at a time over the course of a year, sharing what they learn and imagine with their faith communities, and exploring building faithful ministries that include everyone. All the stories will leave readers wanting to know more, a yearning we can turn toward our own work of acceptance and inclusion.

"Question surrounding disability bring us close to the heart of theology and ethics...Sometimes God asks a congregation what it's made of." - Rev. Samuel Wells, Dean, Duke University Chapel

Sometimes faith communities struggle to imagine ministry by people with disabilities. The section of stories included in Amazing Gifts will invite those faith communities to hopeful new understanding and imagining new possibilities. Living with disability - as with other life circumstances - can grow us in faith and strengthen, or even make possible, certain ministries. Rev. Barbara Meyers, EqUUal Access Board Member, observes in Amazing Gifts,

"Having a mental illness has been an invaluable asset to me in working with others with mental illnesses. There is something about being with someone who has had similar experiences that is very powerful...This is especially powerful when a peer can see you as being able to live a successful life. Just by your presence, you convey that there is hope for them."

Pinsky concludes with theological summaries of why faithful communities are called to be communities of all people, open and accessible, inclusive and celebratory, enduring and changing. Pinsky also admits there are a lot of hard stories, stories that disappoint, that teach us about unfaithfulness, and many more stories that are not yet finished, that we are in the middle of living.

"Learning how to recognize the gifts and talents of children and adults with disabilities can transform congregations and their leaders." - Mark I. Pinsky, "Conclusion"

Unitarian Universalists will particularly want to attend to the stories related by the Rev. Robin Gray and the Rev. Barbara Meyers, included, respectively under Empowering People and Congregations and Ministry By People With Disabilities. Rev. Gray tells of different congregations she has served and the decisions they made to be accessible and inclusive. Rev. Meyers speaks about her Mental Health Ministry and how it has made a real difference in people's lives, including her own.

What faithful stories of inclusion, accessibility, and ministries through and with disabilities do you have? Who is not able to participate and give now and what can you and your community do to address that? What is going on in your faith community that bears witness and hope that every one matters and has gifts to give?

Review written by Rev. Naomi King, EqUUal Access' host on Twitter and teaching pastor with City of Refuge Ministries.

The Accessibilty Check List by Linda Wright

Many congregations are overwhelmed by the amount of work, money and energy it will take to make their facility open to all. It’s rather like home improvement projects. Recently the shower fixture in my bathroom froze with accumulated mineral deposits from the water. I could no longer pull out the button and turn on the water for a shower. I called a plumber who came and cleaned out the debris and replaced a worn out part so that I could use the shower again. “Great,” I thought, “that’s fixed.”

The next week however, the oven wasn’t coming up to the temperature I had set. After I took out several items that were not fully cooked in time, I began to think about purchasing a new oven. In addition to the emergencies, like broken plumbing, I have a list of projects I would like to do around the house, new carpet, re-paint the bedroom and a new screen door. They cannot all be done at one time, I can’t afford that, therefore I have given my list priorities.

It seems that the work is never done. However, if I keep checking off items on my list each improvement will have a benefit.

Members of a congregation often refer to their church as their spiritual home or a sanctuary where they can depend upon the comfort of their church family.

Last year I participated in a lay led service at the UU church I attend. The participants in the service where all people who have a disability. We decided to build upon the successes of the congregation, highlighting the “Great, that’s fixed” positive feeling when a project is completed. The goal was to ask the congregation to create a list of things that would make our church home even more accessible. One of the participants, Fran Boyle said the following:

“After an automobile accident in 2004, I was no longer able to move about as before, but found my self relegated to a walker and motorized scooter. A proponent of universal accessibility for many years, I now saw it from a different perspective, I was the one requiring reasonable accommodation. Previously an activist for a variety of causes, my illness placed me in a position of making do and saying little. Simple activities became exhausting due to the lack of accessibility. Stairs, curbings, and the lack of parking were only a few of the obstacles baring me from what had constituted, in the past, routine activities.

One major loss in my life was the ability to regularly attend services and take part in the myriad of activities at my church. Since I was able to attend church only on an irregular basis, my concept of time was somewhat different from reality. Therefore, with each visit to church, my impression was one of magical change. Chairs rearranged, with aisles providing improved access to seating. An area was left open for those with wheelchairs, just perfect for my scooter. I was able to traverse the newly enlarged church campus using the many wide railing-lined ramps. Headsets were available for those requiring assistance hearing the service. One of the new meeting rooms became a remote sanctuary where congregants desiring accommodations other than those at the main service could worship together in a relaxed environment viewing the service electronically.

It is difficult to express the pride I feel when I look around our church campus where our members' commitment to provide a place of worship, accessible to all is there for everyone to behold.”

A few months after the worship service the congregation asked the local Independent Living Center to do a workshop to help the members appreciate the remaining barriers and prioritize the work that still needs to be done.

I am pleased to report that an automatic door opener into the church sanctuary has been installed and is the latest item to be checked off our accessibility list.