DON'T SHUT US OUT by Terry Kozloff
A Day of Testimony
Last Wednesday, California’s Senate Budget Subcommittee #3 held an informational hearing in Sacramento, our
state capitol, on health and human service items. The day was symbolic of society’s history in the treatment and
perceptions of people with disabilities.
Hundreds of people were there - people with disabilities, families and advocates. They were there to hear the
proceedings or testify against the massive cuts proposed by the Governor to the Department of Rehabilitation,
Department of Developmental Services, Medi-Cal, Social Security. Many cuts, in more ways than you can imagine.
The hearing room was small – maybe enough seats for 65 people or so with only space for three people in
wheelchairs. The subcommittee had previously scheduled the hearing in a much larger, accessible room, but
changed to the smaller room at the last minute. I don’t know why.
Quickly the hearing room became standing room only and the overflow filled the hallway. There were adults with
disabilities in wheelchairs and not, families whose children rely on public assistance to keep them healthy and at
home and care providers who worried about the people they serve – “Where will they go?”
Inside, I could hear the din of the huge gathering outside. I wanted to see, so I squeezed through the masses of
people standing in the room. There were not nearly enough seats.
“Excuse me. I’m sorry. Can you move a little please?”
I planned to step out the door for just a moment. I wanted to glance down the hall and get a feel for just how far it all
spread. I thought I might recognize someone I knew trapped in the hall. But the people were crammed so tight that I
could see nothing at all.
The Sergeant-at-Arms did not want to let me back in. “You need to stay out here,” she said.
“But I’m needed in there”, I said.
So I maneuvered back in, leaving hundreds of people behind to wonder what was happening inside - completely
unable to know. There was no closed-circuit TV or public address system on the outside.
I sat in my seat and pondered the long committee agenda, filled with such items as:
“Medi-Cal - 10% provider rate reduction”
“Eliminate outreach for healthy families and Medi-Cal for children”
“Supported Employment Programs reduced by 5%”
“Elimination of Adult Dental Service”
“Elimination of Medical Supplies”
And on and on.
Slowly Ben was being erased. No wheelchair, no hearing aides, no contact lenses, no leg braces, no healthcare. I
imagined him slowly disappearing from the space he occupies on the earth he loves so.
This does not sound like much of a plan to me.
At one point, a committee member asked that the door to the hearing room be closed. The noise from the hundreds
in the hall was too loud.
Shut them out and silence their voices.
I remember standing in line behind my friend Sigrid waiting to testify. She is a person with a developmental disability,
a self-advocate. She asked me to sit with her at the testimony table. She was scared. So was I.
Sigrid testified about her life, I testified about Ben.
I do not remember exactly what either of us said. I do remember what I felt, looking up at the committee members in
the high place where they sat. I suddenly became painfully aware that the process of having a voice is not one that
affords much dignity in a rough or a good economy. I have seen both.
It feels like begging.
I went back to my seat and the proceedings carried on. As the masses continued to line up to take turns bearing
witness of lives that will be lost – spiritually and physically - I suspected the pleas for mercy must have been very hard
for the subcommittee to hear, one after another after another after another.
“I don’t want to go backwards,” said a young man with cerebral palsy. “I want to go forward.”
So does Ben.
I watched but could not always tell by the faces of some of the subcommittee members whether it was compassion,
frustration or irritation I saw. Maybe it was pity, or concentration. I do not know.
Policymakers work long hours, researching the issues, studying the facts, and listening to matters that impact more of
their constituents than just ours. I respect them for that.
The respect is not yet reciprocated. We deserve that.
Until then people with disabilities, families and advocates in the hundreds and thousands will return to line the
hallways and the sidewalks, over and over and over again.
We will not be shut out.
A Day of Testimony
Last Wednesday, California’s Senate Budget Subcommittee #3 held an informational hearing in Sacramento, our
state capitol, on health and human service items. The day was symbolic of society’s history in the treatment and
perceptions of people with disabilities.
Hundreds of people were there - people with disabilities, families and advocates. They were there to hear the
proceedings or testify against the massive cuts proposed by the Governor to the Department of Rehabilitation,
Department of Developmental Services, Medi-Cal, Social Security. Many cuts, in more ways than you can imagine.
The hearing room was small – maybe enough seats for 65 people or so with only space for three people in
wheelchairs. The subcommittee had previously scheduled the hearing in a much larger, accessible room, but
changed to the smaller room at the last minute. I don’t know why.
Quickly the hearing room became standing room only and the overflow filled the hallway. There were adults with
disabilities in wheelchairs and not, families whose children rely on public assistance to keep them healthy and at
home and care providers who worried about the people they serve – “Where will they go?”
Inside, I could hear the din of the huge gathering outside. I wanted to see, so I squeezed through the masses of
people standing in the room. There were not nearly enough seats.
“Excuse me. I’m sorry. Can you move a little please?”
I planned to step out the door for just a moment. I wanted to glance down the hall and get a feel for just how far it all
spread. I thought I might recognize someone I knew trapped in the hall. But the people were crammed so tight that I
could see nothing at all.
The Sergeant-at-Arms did not want to let me back in. “You need to stay out here,” she said.
“But I’m needed in there”, I said.
So I maneuvered back in, leaving hundreds of people behind to wonder what was happening inside - completely
unable to know. There was no closed-circuit TV or public address system on the outside.
I sat in my seat and pondered the long committee agenda, filled with such items as:
“Medi-Cal - 10% provider rate reduction”
“Eliminate outreach for healthy families and Medi-Cal for children”
“Supported Employment Programs reduced by 5%”
“Elimination of Adult Dental Service”
“Elimination of Medical Supplies”
And on and on.
Slowly Ben was being erased. No wheelchair, no hearing aides, no contact lenses, no leg braces, no healthcare. I
imagined him slowly disappearing from the space he occupies on the earth he loves so.
This does not sound like much of a plan to me.
At one point, a committee member asked that the door to the hearing room be closed. The noise from the hundreds
in the hall was too loud.
Shut them out and silence their voices.
I remember standing in line behind my friend Sigrid waiting to testify. She is a person with a developmental disability,
a self-advocate. She asked me to sit with her at the testimony table. She was scared. So was I.
Sigrid testified about her life, I testified about Ben.
I do not remember exactly what either of us said. I do remember what I felt, looking up at the committee members in
the high place where they sat. I suddenly became painfully aware that the process of having a voice is not one that
affords much dignity in a rough or a good economy. I have seen both.
It feels like begging.
I went back to my seat and the proceedings carried on. As the masses continued to line up to take turns bearing
witness of lives that will be lost – spiritually and physically - I suspected the pleas for mercy must have been very hard
for the subcommittee to hear, one after another after another after another.
“I don’t want to go backwards,” said a young man with cerebral palsy. “I want to go forward.”
So does Ben.
I watched but could not always tell by the faces of some of the subcommittee members whether it was compassion,
frustration or irritation I saw. Maybe it was pity, or concentration. I do not know.
Policymakers work long hours, researching the issues, studying the facts, and listening to matters that impact more of
their constituents than just ours. I respect them for that.
The respect is not yet reciprocated. We deserve that.
Until then people with disabilities, families and advocates in the hundreds and thousands will return to line the
hallways and the sidewalks, over and over and over again.
We will not be shut out.
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