The Ins and Outs of Mainstream Life

Two contrasting stories caught my attention this week.  One exemplifies the continuing efforts to include people with disabilities in mainstream life through various media forms.  The other dramatizes the fact that, in reality, people with disabilities are often excluded, or forgotten, from mainstream life.

The good news is that Archie has a new girl friend...and she has a disability.  After more than 70 years, the venerable Archie comic strip has finally added a person with a disability to the gang from Riverside.  Her name is Harper, cousin of Veronica (my favorite was always Betty.  Stop me when I've exceeded the nerd quotient) and she uses a wheelchair.  She is described as having a spunky personality and, according to the Archie Comics people, does not let her disability define her.  Good for you, Arch!

When we move away, however, from the colorful pages of a comic book to the black and white pages of real life, we see news that is not as positive.  According to the National Council on Disability, as reported in a recent article in Disability Scoop, serious barriers continue to jeopardize the well-being of people with disabilities in the wake of disasters and other emergency situations.  Many 911 systems are still unavailable by text.  Shelters and televised emergency announcements often lack sign-language interpreters for those who are deaf.  Broadcast alerts feature language that is unclear for individuals with intellectual disabilities.  Evacuation maps and websites with emergency information are inaccessible to people with sight impairments.  Said Jeff Rosen, chair of the National Council on Disability, "The concerns of people with disabilities and others with access and functional needs in emergency situations are frequently overlooked, minimized or not even recognized until after the fact."  The agency is recommending that several federal agencies work together to establish guidelines for communicating with people with disabilities in emergency situations.  They are also suggesting more oversight, training and collaboration with the disability community.

Maybe Harper, Archie and the gang can help with that.

Mark Bernstein
Growth Consultant, Central East Regional Group and UUA Liaison to Equual Access

Step By Step

It may move at glacier speed, but more and more the needs of people with disabilities are being addressed in our society in ways both large and small.  The latest to catch my eye involves
the simple but universal act of enjoying a night at the movie theater.  In the Philadelphia area, and, I imagine, in many areas around the country, movie theaters are now offering small devices that discreetly display captions to the individual moviegoer.  Some theaters offer eyeglasses that display captions across the bottom of the inside surface of the lens so that only the wearer can see them.  Others provide little screens mounted on the end of flexible arms that are positioned in the moviegoer's cupholder.  While there are still occasional glitches in the accuracy of the transcriptions, this is a wonderful step forward in helping people with hearing impairments (like me) follow the dialogue and more fully enjoy the movie.

Theaters are also installing devices that aid those with visual impairments as well.  In many theaters, moviegoers can wear an audio headset that includes both the regular movie dialogue as well as the voice of a narrator who describes the action on the screen, for example, whether they are driving a car, eating a meal, or even smiling or frowning.

At the Unitarian Universalist Association, we are constantly looking for ways to use existing technology to aid Unitarian Universalists with hearing and vision problems.  For two years now, we have offered audio versions of UU World.  We are exploring ways of better utilizing closed captions on various YouTube and other videos.  We are also investigating ways of making printed materials available to people with "print disabilities" via audio books, screen reader software and braille.  Resources are available to congregations who want to enhance the sound capacity in their buildings via headsets or loop system.

Whether its watching a movie, attending a worship service or enjoying a good book, everyone deserves the right to full access.  We in the UUA, as in the general society, are getting there.  Bear with us and thanks for your patience.

Mark Bernstein
Growth Consultant, Central East Regional Group and UUA Liaison to Equual Access

Celebrating the Truth

The Today Show ran a short piece recently on Jimmy Jenson, a 48 year old man with Down syndrome.  He ran the New York City Marathon on Sunday and became the first person with Down syndrome to complete this landmark race.  You can see the video by following this link:

http://www.today.com/health/first-runner-down-syndrome-finishes-nyc-marathon-8C11518983

This is no doubt a great achievement, but I wonder....Do we lift up these kinds of stories because we don't expect people with disabilities to succeed in ways like this? Are we celebrating Jimmy's greatness or our own willingness to admit that people are people and that “disability” is an imaginary barrier?

It seems that whenever a person with a disability accomplishes something or otherwise makes a difference in the world, we consider them to be extraordinary.   Not just because what they did was extraordinary but because they did it WITH A DISABILITY.  I came across a website recently that touted the “Top 10 Extraordinary People with Disabilities.”  They included people like Van Gogh, Beethoven, Christy Brown, John Nash, Stephen Hawking, and Helen Keller.  It wasn’t enough that these people created breathtaking music or inspiring artwork or intellectual breakthroughs in science and mathematics.  It’s that they did it WITH A DISABILITY, as if the achievement would be less significant if they hadn’t had a disability.

So maybe, it is important that we lift up stories like the one involving Jimmy Jenson…because no one had ever heard of Jimmy Jenson before.  It’s people like Jimmy who live in anonymity while they fight for their rights; struggle to be accepted in their communities; and persevere in the face of prejudice and doubt.  That is what makes them extraordinary, not the accomplishments they achieve.

Lucy Daniel is the Policy Officer at CBM Australia, an international development agency that works with people with disabilities in the world's poorest countries.  She once wrote, “I no longer focus solely on the problems faced by people with disabilities over the people themselves, because I can now see these problems in the context of everything that people with disabilities have and can achieve…I see a chance to celebrate the truth that each and every person living with disability has the potential to contribute hugely to their family and community.”

So, way to go, Jimmy…and keep on running.

With respect,

Mark Bernstein

Consultant, Central East Regional Group and UUA Liaison to Equual Access

Getting There

As it pertains to issues around disability and accessibility, General Assembly 2013 in Louisville went, from my perspective, pretty well.  The workshop on creating inclusive worship services with Suzanne Fast, Sarah Dan Jones and Amy Carol Webb was well conducted and very well attended.  The Equual Access booth was busy with many ribbons, business cards and literature being handed out, many questions being answered, and many new relationships being formed.  The convention center was, as far as I knew, physically accessible. And the language during group worship and plenary sessions was generally appropriate and respectful.

So, all in all, I think it went okay.  However, there were a few times during the week when people were not as sensitive as they should have been.  We still have a long way to go in raising the consciousness of people around hurtful words and phrases and the suggestion of concepts that demean an entire group of individuals.

The most grievous example of this came during the Sunday Morning Worship and the sermon delivered by the Rev. Dr. William Schulz, President and CEO of the Unitarian Universalist Service Committee and former President of the Unitarian Universalist Association.  In his opening remarks, Rev. Schulz said, “I have been preaching to Unitarian Universalists now for more than forty-four years. One of the definitions of mental illness is doing the same thing over and over again without appreciable effect. Thank you, Peter, for giving me one more opportunity to prove my sanity.”  This was followed by uproarious laughter in the hall, including the dignitaries on the stage behind him.

First of all, Rev. Schulz, that is not one of the definitions of mental illness.  Secondly, it is not true that all people with mental illness do the same thing over and over again without appreciable effect.  Thirdly, I know many people who do not have a diagnosis of mental illness who do the same thing over and over again without appreciable effect.  Witness my New York Mets.

But the worst thing about these remarks was the effort to squeeze some laughs out of a blatantly stereotypical and negative profile of a particular class of persons.  Imagine what would have happened if, for example, Rev. Schulz had begun his sermon with, “One of the definitions of a lesbian is…”; or  “One of the definitions of an Hispanic is …”  At the least, it would have been met with stunned silence.  At most, it would have resulted in cries of protest and people leaving Plenary Hall.

Yeah, we still have a ways to go.  But I’m hopeful.  I truly believe that while words may sometimes divide us and preconceived ideas, judgments and assumptions may sometimes hurt us, if we pay attention to these things; if we give voice to it and speak out against it; if we strive to understand others with compassion and empathy, we will prevail.  And General Assembly will truly become the beloved community.

As the author Jose N. Harris said, “I may not be there yet, but I’m closer than I was yesterday.”

With respect,

 Mark Bernstein, CERG  Consultant and UUA Liaison to Equual Access

What's In a Name?

It was Mark Twain who wrote that “…language is a treacherous thing, a most unsure vehicle…” For people with disabilities and their allies, the struggle over language is on-going. There are those who insist on “people first” language as the means to convey respect for the individual and the acknowledgement that one is not defined by his or her disability, but by their deeds and their character. On the other side are those who say that we spend too much time worrying about labels and images and instead should be focusing on effecting concrete societal changes for a group that has historically been marginalized and discriminated against. “It doesn’t matter what you call us (or them)”, they say. “What matters is how we (or they) are treated.”

Personally, I align with those who believe that language is important; that how we refer to people often suggests and defines how we treat people. And so we continue to search for labels and titles that command greater respect and reduce the stigma attached to people with disabilities. For example, 43 states so far have taken steps to remove the word “retarded” from their laws, conceding that the word “retarded” is outdated and has become offensive. In most cases, the word was replaced with the term “intellectual disability.”

It is in this context that I applaud the Unitarian Universalist Association Board of Trustees for voting to place on the 2014 General Assembly agenda, new by-laws language related to inclusion. In Article II: Principles and Purposes, the current language reads, “The Association declares and affirms its special responsibility and that of its member congregations and organizations to promote the full participation of persons in all of its and their activities and in the full range of human endeavor without regard to race, ethnicity, gender, disability, sexual orientation, age, language, citizenship status, economic status, or national origin and without requiring adherence to any particular interpretation of religion or to any particular religious belief or creed.”

The proposed language reads, “Systems of power, privilege, and oppression have traditionally created barriers for persons and groups with particular identities, abilities and histories. We pledge (to do all we can) to replace such barriers with ever-widening circles of solidarity and mutual respect. We strive to be an association of congregations that truly welcome all persons and commit to structuring congregational and associational life in ways that empower and enhance everyone’s participation.”

The latter paragraph is a call to action. It replaces the word “disability” with “abilities.” It puts into context the struggle to advance the rights of people who have historically been marginalized. It calls on all congregations to welcome everyone into circles of respect, empowerment and participation in congregational life.

We in Equual Access have the opportunity to lead the way in supporting the UUA in this commitment. The UUA-Equual Access partnership is strong and the next few years will see a growing and a cementing of that relationship. The only language that will matter as we move forward is “cooperation”, “collaboration”, and “courage.”

With respect,

Mark Bernstein
CERG Growth Consultant and UUA Liaison to Equual Access

One Step At A Time

Accessibility Floor Mats Adorn the
Floor of UUFCC

On the home page of its website, the Unitarian Universalist Fellowship of Centre County (UUFCC), located in State College, PA, includes the following statement: We welcome participation in our services and activities by all persons without regard to age, ancestry, color, disability or handicap, national origin, race, gender or sexual orientation.

And guess what? They mean it. When you walk into their beautiful sanctuary, one of the things that you notice are several spaces among the rows of chairs with blue mats placed on the floor. Printed on the mats is the wheelchair logo, the universal symbol of accessibility. The floor mats are attractive and blend seamlessly with the dark blue of the surrounding chairs. More importantly, they signal to the congregation and to those visiting that this is a place where all are welcome; that we have room here for all.

The Fellowship’s Minister, Rev. Mark Hayes, says, “Rather than shuffling chairs around, we wanted to be more intentional and more welcoming.”

Their intentionality extends also to those with hearing disabilities. The sanctuary has a two level looping system, which enables anyone with a hearing aid to listen clearly and free of other distracting noise in the environment without the use of a separate receiver and headset.

UUFCC is just one of many Unitarian Universalist congregations that are committed to greater comfort and inclusion of people with disabilities in worship and congregational life. The Unitarian Church of Barneveld, located in Central New York State, is a small congregation with a very big heart. In the spring of 2012, they dedicated their recently completed ramp access. The ramp, which provides access to the lower building’s social area, was built with donations from members and friends, UU related funding, and hours of volunteer labor. For the time being, access to the building will only allow individuals to hear the worship service, but the good people of Barneveld are not done. Phase two of the plan will be the installation of a lift from the ground floor to the sanctuary.

As journalist and social activist Dorothy Day wrote so eloquently, “People say, 'What is the sense of our small effort?' They cannot see that we must lay one brick at a time, take one step at a time." The people of Centre County and the people of Barneveld, one step at a time, are building monuments to our faith and to our commitment to be a religion for all.

Thanks to Ellen Asprooth, St. Lawrence District Reporter, for contributing to this blog.

Mark Bernstein
CERG Growth Consultant and UUA Liaison to Equual Access

Opening Your Heart

A couple of years ago, I attended a worship service at a wonderful church in Pennsylvania.  I arrived a few minutes late and found the congregation standing for the opening hymn.  I took my place in one of the pews and stood along with the rest of the congregation.  We proceeded to stand for the next several minutes while the minister made several pronouncements and we sang a second hymn.  I grew a little tired and began thinking about how good it would feel to finally sit.  I looked around the sanctuary and saw other members who I imagined were thinking the same thing.  I also reflected on those in the congregation who were physically unable to stand and how they must feel, having to sit all this time while everyone around them was on their feet.

This was one of many moments I have had in congregations across our region where I questioned our sense of hospitality toward those who have varying abilities…in mobility, functionality, and interrelatedness.

One of the keys to growth in our congregations and in our faith movement is our willingness to be more accessible and more inclusive of people with varying abilities.  According to the National Organization on Disability, people with disabilities are very likely to say their faith is important to them, but are more likely to not attend services due to accessibility issues. With the aging of the American population, they point out, the situation is becoming an increasingly significant factor in worship community vitality.

Part of the problem, certainly, is physical barriers.  Steps that people can’t climb; sound systems that people can’t hear; hymnals that people can’t read.  According to Ralph Adams Cram, architect and critic of American church design, places of worship... “were to be spiritual oases, set apart from their pedestrian environment through substantial, soaring walls and monumental stairs approaching impressive entrances well above the street. Unfortunately, our legacy is daunting stairs, heavy doors, and soaring walls. Much as our hearts may want to welcome everyone to enter our halls 'as a homecoming' the reality is that we are sometimes confronted with architectural designs that make hospitality a difficult undertaking, to say the least.“

While it may be cost prohibitive to make large structural changes, most accommodations require little or no outlay of money.  The biggest investment is not in money, but in the effort to find creative ways of enhancing the worship experience.  Make sure there are spaces in the sanctuary for wheelchairs; invest in assistive listening devices (they’re not as expensive as you may think); have several orders of service in large font available; ensure that you have enough accessible parking spots near the building; ask people during the worship service not to stand, but to “rise in body or in spirit” or introduce more “seated” hymns.

Here are some additional ideas for creating a more hospitable and inclusive environment:

·        Always use microphones (even if someone says they don’t need one)

·        Encourage speakers, worship associates, etc. to speak loudly and clearly

·        Raise the pulpit so that all can see

·        Make sure there is accessibility to the pulpit so that people with mobility limitations can speak or lead the service

·        Have a wheelchair or two donated and make it available

·        Wear name tags all the time for people with memory problems

·        Record services and make them available. Often a CD can be created instantaneously; or have them available on your website.

·        Hand out printed versions of the sermon.    

In his book, Year of Our Lord: Faith, Hope and Harmony in the Mississippi Delta, T.R. Pearson tells the story of Lucas McCarty, a young white man born with severe cerebral palsy who uses a wheelchair but also gets around by walking on his knees with the help of knee pads worn over his blue jeans.  He shouts and makes vocal sounds, but for the most part communicates through an electronic language device.  Lucas became a member of the Trinity House of Prayer, a small, poor African American congregation.  He was embraced by the congregation and was in no way considered out of place or disruptive.  Lucas even joined the choir.  Pearson writes, “Without exception, Trinity’s members treated Lucas with unstudied compassion. At no financial cost to the congregation — no special programs, no architectural alterations— they demonstrated that making people with disabilities, even severe disabilities, feel a part of them is within reach of every house of worship. Sometimes it's not about building a ramp. Sometimes it really is about opening up your heart.” 

May it be so.

Mark Bernstein

CERG Growth Consultant and UUA Liaison to Equual Access

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.

Coping with Crossflow by Roger Christan Schriner

Many years ago a wise old fellow told me why he was no longer frazzled by Los Angeles traffic. "I stopped obsessing about how I needed to get from Point A to Point B. Instead, I just focused on coping with the crossflow."

By crossflow, he meant anything that slowed him down as he moved toward his destination. Dealing with crossflow no longer felt like an irritating distraction from the task of "getting there." Coping with crossflow WAS his task.

After this shift in attitude, he was less likely to be livid while following a pokey driver or getting stuck behind someone who had double-parked. Why did he feel better? Because defining his task as navigating crossflow helped him expect and accept these obstacles. It was similar to the mind-shift that occurs when a sales clerk realizes, "This customer who wants my attention right now is not a distraction from doing my job. The customer IS my job."

So what does this have to do with Equual Access? Realistically, every time one of us attempts to improve access, we will confront crossflow. In some cases it’s just a simple matter of jumping through procedural hoops to achieve a favorable outcome. But at times the barriers to change can be daunting, discouraging, and depressing.

I am a temporarily-abled equal access ally involved with E.A.’s Right Relations Committee. My professional background includes work in ministry, psychotherapy, and organizational dynamics. Like every minister (and every lay leader), I have lots of experience with crossflow. I know that in local congregations improvements come slowly, sometimes frustratingly so. We need to remember that it’s normal to encounter snags, complications, and sometimes overt resistance.

Obviously the attitudinal shift I’m talking about does not eliminate all stress for change agents, or for drivers in L.A. At times my friend who talked about crossflow would still become irritated by gridlock on Sunset Boulevard. But he was far less frus.trated when he defined crossflow-navigation as his primary task.

I’m planning to write an occasional entry on the E.A. blogsite about coping with crossflow. What glitches, setbacks and pushbacks do UU’s encounter when they work for equal access to congregational activities?

As one example, you may have read the blog entry called "Make your congregations loopy!" What problems might people confront in trying to encourage a local UU group to "loop" its sound system so those with hearing devices can tune in by just flipping a switch?

If you have any ideas about crossflow issues, or if you’d like to share a relevant case study, just post a comment. In October I’ll write more on this topic. Thanks for reading this entry, and good luck with every bit of crossflow that comes your way today.