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

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 25^th anniversary of the Americans with Disabilities Act.

Beautiful friendship, indeed.

For more information about the Disability/Ability Action Program, contact me at mbernstein@uua.org or Reverend Barbara Meyers at bfkmeyers@prodigy.net.

With respect,

Mark Bernstein

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

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