I have been trying to catch up since Washington, and have a few moments
to breath...and to share a couple of things.

First, a couple of comments about the Alliance meeting. There were
problems with numbers of people and the space, but the synergy of the
groups meeting together was, in my book, terrific. I have been at a
couple of other conferences where there were large numbers of
professionals, family members, and people with disabilities present, and
this one, it seems to me, did the best job of including all
perspectives. That group also included direct support staff.  It is
very, very hard to do a conference that brings people to a common table,
and this one was a pretty rich banquet, it seemed to me.

Second, the other good thing about it was that we heard from unusual
suspects. The keynote presentations by Roger Nuremberg and Meg Wheatley
were terrific. I did not hear Martin Luther King Jr.  But it seems to me
that one of the key things we need to do, in the disability arenas, is
listen to others from outside, and use that for new connections. 

For example, some of Meg Wheatley's points were:

There are numbers of people with Relationship Deficit Disorder...we
forget how to be present to one another.
Life Affirming leadership relies on others' creativity and commitment.
Some of her axioms:

1. People only support what they create
2. People only act responsibly for what they care about
3. Everybody is an expert about something
4. Keep expanding the circle, include, more is possible.
5. Listening is healing.
6. Listen for what is different. We rarely listen for what is not like
me.
7. Create time to think together.
8. We don't know what the future will bring, but if we have strong
relationships, we know we'll be ok.

Like her wonderful book Leadership and the New Science, more than a
decade ago, here is a person coming from the world of management and
consulting, and writing and speaking without knowing a lot, I would
guess, abou the key issues in developmental disabilities, but it seems
to me those are just exactly appropriate for the kind of inclusive
management and community building we need to be about.  

Finally, to share one of the most incredible moments of the week for
me, I helped organize an interfaith presummit on Tuesday, with over 100
people, at St. Margaret's Episcopal, across the street from the DC
Hilton.  The goal was to build some bridges between faith groups in
disability services and supports, and public/secular organizations
represented by the Alliance. Pat Morrisey, Sue Swenson, and Chester Finn
came to speak.  They all did a great job. But here was the moment of the
day.

Chester was the second speaker. As he talked (discovering an avocation
as a black preacher, I think), Charlie Swenson began to get a bit bored
with this "typical" church program. Charlie is Sue's son. He came with
several direct support staff. In a classic cycle of trying to help him
relax and be quiet, he just got more agitated, and finally, they left
the room for a few moments. Chester was all class. He just kept right on
talking without a hitch. And at the end, said, "Sue, I have always heard
you talk about Charlie. I have never met him. Can he come back in so I
can say hello."  

That happened, and Sue began speaking, introducing Charlie and the
three direct support professionals who came with Charlie. She gave them
each an opportunity to speak, noting that they all were people for whom
their faith commitment, or spirituality, was an important part of their
sense of vocation. They were all great. The third, though, Nick Hajdu,
looked a little uncomfortable speaking, but he said he would like to
share a piece he had written about his relationship. As I write this
email, I still get goose bumps on what happened next. The lines and
words and sincerity just went straight to the heart and gut, so to
speak. It is below, and simply is one of the most articulate and
powerful pieces I have seen in a long, long time, on match with Jean
Vanier, Henri Nouwen, Margaret Wheatley, or others.  Don't try to read
it quickly. In fact, do it out loud. And I just wonder how many other
riches there are in the lives and voices of other direct support
professionals, when their thoughts and feelings become words and voice.

My Friend Charlie
 
He is my friend: I am his friend
I help him out: He helps me to learn
I help him to learn: He helps me to grow
I help him to grow: He teaches me to accept
 
His struggle: Is my struggle
His vulnerability: Leads to my respect
My respect: Leads him to trust
His trust: Leads to my devotion
 
His availability: Feeds my desire to be needed
I keep his secrets: He keeps mine
     We have an arrangement
His lack of self-consciousness: Leads to my tolerance
His constant need for stimulation: Leads to my patience
His discomfort: Sharpens my sensitivity
His unhappiness: Is my challenge
His presence: Eases my isolation
His loyalty: Leads to my loyalty
     Which leads to mutual appreciation
 
His brokenness: Makes me accept my own brokenness
     Which leads to healing
His humanity: Leads to personal connection
His steadfastness: Centers me
 
His smile: Is my reward
His joy: Lifts my spirits
His happiness: Gives me a sense of purpose
His struggles: Expose my anxieties
     Which tests me
     Then strengthens me
     And in turn bolsters my faith
 
In guiding: I am guided
In helping: I am helped
In teaching: I am taught
 
In his laughter: There is joy
In that joy: There is energy
In that energy: There is spirit
In that spirit: There is grace
 
In his eyes: There is a glow
In that glow: Is his soul
In his soul: There is God
And in God: There is peace

Nate Hajdu
Jubilee Association of Maryland
Spoken at the Interfaith Disability PreSummit
September 22, 2005

(Permission is given to reprint this by Nate Hajdu and the Jubilee
Association, a Mennonite based organization in Maryland, as long as his
name and the attribution above is used. Nate is one of three direct
support professionals who spoke at the Interfaith Disability Presummit
on September 22 at St. Margaret's Episcopal Church in Washington, D.C.
on the ways that their faith is impacted by supporting and working with
Charlie Swenson. If you reprint this, please send a copy to Nate Hajdu,
Jubilee Association of Maryland, 10408 Montgomery Ave., 2nd Floor,
Kensington, Maryland 20895. His email is [log in to unmask])






Bill Gaventa, M.Div., Associate Professor
Director, Community and Congregational Supports
The Elizabeth M. Boggs Center on Developmental Disabilities
UMDNJ-Robert Wood Johnson Medical School
P.O. Box 2688, 335 George Street
New Brunswick, N.J. 08903
Phone: 732-235-9304
FAX: 732-235-9330
Web Page: http://rwjms.umdnj.edu/boggscenter