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Thursday, February 6, 2014

Radical Love and Inclusion

Reprinted form 30 Days of Love.

Sometimes I forget that I’m different. Sometimes I’m part of the group, participating and being myself and being accepted for who I am. And then, out of the blue, I’m put back behind the barrier, reminded that my lived experience is, definitely, different. The funny thing about those painful moments is, usually, I’m the only one in the room who even knows it happened. Usually no one intended to exclude me, and they have no idea that they did. But they have made it clear that they are sure their lived experience is better than mine.

“I could never do what you do,” one says. Uh huh, I think, wondering what they mean by that. Please, let them say something about my talent for synthesizing a discussion, or that I’m a good listener. Nope. “I would have given up.” Really? And done what with the rest of your life? Hide under the bed? I don’t believe you.

There are a million versions of it, some gentler than others, more likely to be said in my presence. “You’re so courageous.” “You could have done so much. What a waste.” “I’d rather be dead than disabled.” The message remains the same – my lived experience is too different.

I understand about the fear. We are taught to value radical independence and self-reliance. But autonomy can be over-rated. In this world full of barriers, I ask for accommodations. Even for help. Rather than diminish me, it teaches me, again, that we are inter-dependent – all contributing in different ways.

I have multiple disabilities. I use a mobility scooter. I encounter the world differently. There are a lot of things I would never have experienced running up the stairs three at a time. Perspectives I only get down here at waist-level. Conversations I would never have had, if I had not been on a “slightly different path.”

Too often, when someone inadvertently “others” me, I don’t say anything. I decide against the “teaching moment.” There are too many of them. Yet, I know I feel included when I can point out a disempowering attitude or remark as ableist, and know that my intent will not be questioned and I can take up the teachable moments.

And I know I feel included when someone takes the trouble to draw my attention to ways I am excluding someone. When they bother to take up a teachable moment with me. The communities we live in are filled with so many differences that we will, almost certainly, “other” someone from time to time without meaning to do it, and without being aware of doing it. I do it. And, if that person I just “othered” decides to make it a “teaching moment,” I hope to have the grace to listen and to experience the discomfort that comes with realizing that I messed up, again. For me, it’s part of the journey.

In faith,

Suzanne Fast

Sunday, January 5, 2014

Looking Backward, Looking Forward

As we begin a new year together, it is a time to be reflective. Many of us take time to consider the year just finished, and also consider the year that now begins. There are so many ways in which to reflect at this time of year.

Our EqUUal Access community is a special and dear group of people within the larger Unitarian Universalist community. Many of us deal with challenges that are daunting on a regular basis.

I would like to share some possible questions for reflection as we begin 2014:
  • What were your deepest joys during 2013?  
  • In what ways did you make a difference in someone else’s life in 2013?
  • How did you change in a positive way during 2013?
  • How did another person or group offer you help or kindness during 2013?
  • What was one important thing that you learned during 2013?
  • In what way do you hope to make a difference in someone’s life or in the world in 2014?
  • How would you like to change in a positive way during 2014?
  • To whom would you like to offer your help or kindness during 2014?
May we work together in peace, love, and hope. I wish each of you the very best—a warm thought, a compassionate moment, a blessing—in 2014.

With peace and hope,

Rev. Marcia Marino, D.Min.

Chair of Right Relations, EqUUal Access

Thursday, December 12, 2013

The Passing of a Hero

The passing of Nelson Mandela this week reverberated throughout the world.  Rarely has a human being received such universal acclaim and appreciation for his presence on earth.  Mandela represented the highest ideals of compassion, forgiveness, truth, honesty and love.  
So it is not surprising that he also spoke eloquently of the needs and rights of people with disabilities in our society.  Here is what he said,
"It is not a question of patronizing philanthropy towards disabled people. They do not need the patronage of the non-disabled. It is not for them to adapt to the dominant and dominating world of the so-called non-disabled. It is for us to adapt our understanding of a common humanity; to learn of the richness of how human life is diverse; to recognize the presence of disability in our human midst as an enrichment of our diversity." 
We mourn the passing of this great man.  The world is poorer today because he is not in it.

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

Monday, November 4, 2013

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:

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

Sunday, September 29, 2013

The Beginning of a Beautiful Friendship

The Disability/Ability Action Program is under way and so Unitarian Universalism begins a new chapter in its commitment to inclusion of people who historically have been on the margins of society.  A collaboration of Equual Access and the UUA, this groundbreaking program challenges congregations to welcome, embrace, support and integrate people with disabilities and their families into congregational life. 

Congregations seeking certification will conduct an assessment of accessibility and inclusion of people with disabilities, create an action plan of worship, workshops and projects, have that plan approved by the Disability/Ability Certification Committee and then implement the plan. When the plan has been fully implemented, the congregation can vote to be recognized as a congregation with a Disability/Ability Action Program certificate.  The program is designed to meet the needs of the entire congregation and includes workshops and activities for children and youth as well as adults.

Ten congregations are currently participating in the two year pilot project:

First Unitarian Universalist Congregation of Ann Arbor, MI
First Parish in Bedford, MA
The Unitarian Universalist Congregation of Buffalo, NY
First Parish Cambridge, MA
First Parish Kingston, MA
The Unitarian Universalist Church of Las Cruses, NM
The Unitarian Universalist Congregation in McHenry, IL
The Congregational Society, Unitarian Universalist Peterborough, NH 
Unitarian Universalist Fellowship of Raleigh, NC
First Unitarian Universalist Church of Rochester, MN

The plan is for the project to be offered to congregations around the country in 2015 to coincide with the 25th anniversary of the Americans with Disabilities Act.

Beautiful friendship, indeed.

For more information about the Disability/Ability Action Program, contact me at or Reverend Barbara Meyers at

With respect,

Mark Bernstein

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

Wednesday, July 24, 2013

The (Star)Bucks Stops Here

In early March of this year, a group of deaf people were holding their monthly meeting at a Starbucks in lower Manhattan.  Part of a national effort called Deaf Chat Coffee, they were gathered together to socialize over coffee and pastries purchased at the coffee outlet.  Suddenly, their meeting was interrupted by police officers who had been summoned to the store by Starbucks workers.  The workers claimed that the group was creating a disturbance, conducting a meeting without a permit, and were not purchasing items from the store.  None of these allegations were true and the police officers apologized to the group, finding no illegal conduct.  In addition to harassing the group by calling the police, one Starbucks employee allegedly laughed hysterically at the speech of one member of the group and other deaf customers claimed that they were refused service.  In one case, a Starbucks employee who knew some sign language tried to assist the deaf customers and was reprimanded by another employee.

When a complaint was filed with Starbucks CEO Howard Schultz and other upper management staff, an executive apologized and tried to assuage the group by offering them a preloaded Starbucks gift card.    That wasn’t enough for these customers and they promptly filed a lawsuit, now pending in Federal Court.  (To their credit, Starbucks subsequently published a post on their website decrying discrimination in any form and outlining the ways in which they intentionally support Deaf partners and customers.)

For those Unitarian Universalists who don’t think that matters related to inclusion of people with disabilities is a social justice issue, think again.  If this action had been perpetrated against a group of LGBT persons or persons of color, the uproar would have been deafening (no pun intended).  But because it happens to a group of people whose rights are not nearly trumpeted as much as those of other marginalized groups, it gets a 10 second spot on the local news right before sports and weather.

There are a group of UU congregations who are planning a joint worship event in the fall.  The idea was raised to hire a sign language interpreter for attendees who are deaf.  I was told that there was resistance to the idea since some members of the planning committee felt that it wasn’t necessary.  Thanks to the persistence of one member of the committee, the idea was adopted and the interpreter was hired.

We have a long way to go in recognizing and acknowledging the rights of people with disabilities, both in the outside world and within our Unitarian Universalist communities.  Let’s start talking about it in our congregations.  I’ll be happy to discuss it with you anytime, perhaps over a cup of coffee?


With respect,
Mark Bernstein, CERG  Consultant and UUA Liaison to Equual Access

Thursday, July 4, 2013

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