Henry
by Kenna Hickman on Friday, February 4, 2011 at 8:06pm
Danny Reed’s story is really a lesson in Professional Humility. Danny grew up in a time
when a person with a significant disability was not expected to do many things, he
wasn’t expected to need an education, he wasn’t expected to live on his own, he wasn’t
expected to marry, raise children, and he certainly wasn’t expected to work. By age 12,
Danny needed to use a wheelchair. His public school wasn’t built to be accessible for
someone using a wheelchair. Drs. and professionals told Danny and his family that it
was OK that he could not attend school, because of course, since he had a significant
disability he wouldn’t need an education. Danny grew up in a time when professionals
advised families that a child with a disability should be placed in an institution so that
they could be cared for by trained professionals. Danny’s parents didn’t accept that as
an option. They took responsibility for Danny’s care as he grew up working opposite
shifts at work. Although Danny remained at home from 12 on, that didn’t mean that
didn’t mean he didn't get an education. He was a prolific reader and as we all know he
had a brilliant mind. He continued his education on his own when the public system
closed their door.
In 1981 Danny was in his 30s , his mother was growing older and was no longer able
to care for him. Danny moved to the Santa Barbara area to live with his brother, Mike
and Sister-in-law Cindy and their new baby Stephanie. Danny and his family visited the
Department of Rehabilitation and learned about opportunities, services, and resources
available to Danny. Danny and his family were then referred to a relatively new
agency, The Independent Living Resource Center. The ILRC is part of a network of
independent living Centers throughout California and the United states that are run by
people with disabilities and were established to provide advocacy and support for
individuals with disabilities to achieve their goals of independence. Danny learned
through the peer counselors at ILRC more about services, resources and new life
options. With his families support, he took full advantage of these opportunities.
Danny, became Henry Reed. Henry returned to the Department of Rehabilitation, with
new ideas about his future and a desire to explore options for employment. He returned
to public education at age 35 when he enrolled at SBCC. He moved out of the family
home with his young nephew and got his first apartment near here on Santa Fe Place.
He met a Rehab Engineer, AG Garris at Rancho Los Amigos. AG whittled a piece of
wood to fit Henry’s elbow and placed it over the toggle switch on an electric wheelchair.
At 36, Henry had independent mobility for the first time since childhood as he learned to
drive an electric wheelchair with this simple adaptation. Prior to this a family member
talked about how Henry would stay in a room or one spot for hours at a time until
someone would come and move him. Henry met with people from Project Threshold a
program at Rancho that specialized in adaptive technology. Henry wanted to be able to
open his apartment on his own. The staff from Project Threshold came up with an
electronic door lock that Henry could run with his nose. They set up a spring loaded
door. Henry could come home from school open the door and go inside with no one
around. He could be alone for the first time. He savored the solitude. For most of his life
he lived without a live in attendant, because he valued the opportunity to be alone, to
have that solitude and to have that choice.
Henry wasn’t immune to the stereotypes of people with disabilities in our culture. When
he started Santa Barbara City College he thought he wanted to be a computer
programmer. Pretty quickly he realized after years of isolation that he like being around
people and he found that he had a gift for communication. Yes, certainly did! Henry
quickly became a leader and advocate in the disability rights movement here in Santa
Barbara. He led the access committee that advised the SBCC administration on
campus access and he was soon also working with the Mayor’s committee as well.
With his leadership the Access Team completed a comprehensive access survey of
the campus. As you walk the grounds and see the ramps and other efforts that have
been made to remove barriers and create access for individuals with disabilities, know
that this is just another of Henry’s legacies. Henry benefited from the support and
services available at SBCC. He completed his GED. and then he distinguished himself
as a student at SBCC and graduated with honors. He went on to be an outstanding
student at UC Santa Barbara. He completed his Master’s Degree through Antioch and
obtained his MFCC. He worked at SBCC as a counselor in the Workability Program. I
was fortunate to hire him as a Senior Vocation Rehabilitation Counselor for the
Department of Rehabilitation. Henry, then returned to Santa Barbara City College,
accepting a position of counselor here , where he has touched and changed so many
lives.
With Henry’s permission, I have told this story for many years to new counselors as a
lesson in professional humility. We should not be too confident in our judgments,
especially when those judgments place limitations on someone’s options and potential.
Henry certainly taught us that and it is a lesson that should not be forgotten. We also
need keep this in mind as we are perhaps unintentionally creating new barriers for
people in the budget priorities we establish or accept. Project Threshold the program
that supported Henry’s independence with their years of specialized knowledge in
adaptive technology has been eliminated. It was considered too expensive. The
Rehabilitation program at Rancho is also gone. DSPS programs around the state have
been cut significantly. I am proud that this college has continued to make access and
DSPS services a priority and they have found resources to maintain services despite
cuts at the state level. Severe cuts are being made to the In home support services and
MediCal programs. In some cases decisions are being made that are leading to people
living in hospital settings again because of services being inadequate or lost that would
support their ability to live independently in the community. Henry used these resources
to achieve his goals. He was successful and gained independence from those systems,
but at one time they were a critical resource to him. He would not have the same level
of support today from those programs because of repeated cuts with more still
proposed. We have become complacent and accepting of these supposed budget
realities. I hope we will leave here reminded of the responsibility we all share to create
access and opportunity for everyone. There won’t be another Henry Reed, but there will
be others who come along with much to contribute. I believe that one of the best ways
we can honor Henry’s memory is to not be complacent, make a commitment to
advocate, write letters, talk to others, and ensure that there will be resources and
opportunities for others to achieve their potential and share their gifts as Henry did.
Henry became a good friend to me and to my family and a respected colleague. I’ve
never met a greater teacher or philosopher, a man with more insight or compassion,
someone who could make my husband laugh with his dry and sometimes irreverent
sense of humor, just as easily as he could make my son crack up with his silliness or
rides flying across the park hanging on the to the back of Henry’s chair. I will keep with
me forever my memories of talks with Henry, concerts we attend, stories of his life
adventures, and our shared experiences. Henry didn’t like to be referred to as special
or inspirational because of his disability. The truth is that anyone who got to know Henry
knew that he was an extraordinary man, he was special, and he truly was inspiring, but
it wasn’t because of his disability. Henry was not defined by his disability, he created his
own path and I will be forever grateful that I had the honor of traveling that path with
him.