Disabled In Action of Metropolitan New York : Newsletter/Meeting(s)
Patt Bromberger
Please remember that Disabled In Action meets on September 24, 1995,
Sunday, at The Associated Blind in New York City at
135 West 23rd Street in Manhattan at 1:30 PM.
My sincere apologies; I scanned this newsletter and some of it made
it through the scanner and some of it didn't. Some of this copy was
edited by me, some of it was deleted because I couldn't make out the
gibberish the scanner substituted for words that belonged there but I
thought the information contained herein would be valuable to the
community of people with disabilities. -- Patt Bromberger
DISABLED IN ACTION OF METROPOLlTAN NEW YORK
DIA ACTIVITIST
Vol. 25, No. 2, May 1995
DIA Fights Back
by Danny Robert
Toward the end of January, I got a copy of Lt. Governor Betsy McCaughey's
Medicaid budget. I remember thinking, "This can't be for real." Then,
on February 1, Pataki made it official. I was, no pun
intended, paralyzed. While advocates like Marilyn Saviola (CIDNY),
Mel Tanman (EPVA), and Susan Dooha (GMHC)
developed strategies and fought the first skirmishes, I hid my
head in the sand. A 100 hour per month cap on Home Care?
Housekeeping services and the Lombardi "Nursing Home Without Walls" Program
eliminated? No more Medicaid-funded transportation, OT, PT, dental care,
eyeglasses? Terrible cuts to SUNY and CUNY, to OMRDD (Office for Mental
Health and Developmental Disabilities), to welfare and AFDC (Aid to
Families with Dependent Children), to homeless services, to Home Relief
(SSI)?
By the second week in February, when Giuliani called for another
$1.2 billion cuts in Medicaid, including $68 million
out of Home Care, my incredulity and fear-induced malaise turned to rage,
and then to action. I wrote a couple of versions
of "My True Story," which I faxed to downstate Republican Senators
and Assemblymembers and to Republicans on the City Council
(copies upon request).
Throughout February, the fight back momentum built. While students, health
care workers, seniors, clients and staff of Independent Living Centers,
State employees, AIDS and homeless and substance abuse activists
demonstrated, their advocates lobbied against the cuts.
On the cold afternoon of March l. 30,000 people, HHS workers from Local
ll99, health care reform activists. and more than 100 "gimps,"
including many from DIA marched from the Empre State
Building to 27th and First Avenue, across the street from Bellevue Hospital.
Ironically. organizers referred to us as their "patients who
couldn't fight for themselves." Marilyn Saviola gave a rousing
speech pointing out that for many of us, Home Care makes independence
and productivity possible and that without it, we would
vegetate in nursing homes, unable to work, pay taxes, or
contribute to our society. "We knew Pataki was for the death penalty.
We didn't know he meant it for us."
On Wednesday evening, March 8, Giuliani held a Town Meeting at Park
West High School. DIA Board members Phil Bennett, Shelley Buslowitz,
Nadina LaSpina and I, plus member Rolando Alvarez, wore signs reading
"Medicaid Cuts Kill" and "Save Home Care." I asked the following question:
"My name is Danny Robert. I'm 47 years old. I live in a one bedroom apart-
ment in Chelsea. I worked for 20 years as a union prop man on TV shows and
movies. Seven years ago, I was diagnosed as having Multiple Sclerosis. I
could hardly walk and could no longer work. I applied for Social Security
Disability Income, which was awarded. l also got a pension from my union.
Because I was a retired union member, I had excellent private health
insurance, which was and is primary, and Medicare, which comes
with SSDI and is secondary. But neither one covers Home Care.
"Five years ago, I became unable to get in and out of bed, or to dress or
shower by myself. I was unable to prepare my own meals, do my own laundry
or house cleaning. l needed personal assistance to survive. I found out that
I was poor enough to ualify for Medicaid. Thank God. because Medicaid is
the only way I can get Home Care 11 hours a day. every day, which
is what I need to live in my own home. Now, you said Pataki wants
to cut Medicaid. Pataki says that if I can't get along on
l00 hours a month, or three hours a day, I belong in a nursing
home, which would cost the City and the State a lot more.
"I'm scared, Mr. Mayor. It doesn't make sense to me that I have to live in
fear so that you and Pataki can look good on paper. Does it make sense to
you?"
His answer was double-talk: "we spend too much on Home Care, more
than any other city. I'm going to cut Home Care. But nobody's going to get
hurt." Yeah. Right.
Early on Monday, March 13, Joan Kinzer, Nadina and I rode to
Albany with Marilyn Saviola in the CIDNY van to join folks from
Independent Living Centers (ILCs) around the State in a day of guerrilla
theater and lobbying. While Nadina and I held a banner reading "Don't Cut
Home Care. Nursing Homes Cost More," about 30 ILC folks from around
the State--a few dressed as doctors, the majority as patients--clogged a
passageway in the building housing the NYS Senate, Assembly and Executive
offices. They acted out an 'Emergency Room" scenario to dramatize the fact
that Pataki's cuts to Home Care would send peop!e with disabilities to ERs
with decubitus ulcers. respiratory failure diabetic reactions, etc.
In the afternoon. we divided into small teams and went to the offices of
every Republican State Senator and Albany Assembly members. We were
armed with a report, prepared by Valerie Boglart of Leal Services
which demonstrates conclusively that personal care, particularly client-
managed care like that administered by Concepts of Independence, is much
cheaper than any other type of long-term care.
Throughout March, Pataki and Giuliani continued to provoke the ever-
growing, mad-as-hell coalition. It was as if they were competing for
the title, "Mr. New York Prince of Darkness."
On Thursday, March 23, tens of thousands of students, teachers and
supporters commandeered the Brooklyn Bridge and City Hall Park.
There were arrests and documented instances of police brutality.
On March 31, the day before the budget deadline, DIA demonstrated at 270
Broadway, which houses the offices of NYS Senate Majority Leader Joseph
Bruno, Speaker of the Assembly Sheldon Silver, and most of the down-
state New York legislators.
By 11:30, there were about 25 of us, including City Councilmember Tom
Duane, Paul Feuerstien from Barrier Free Living, Paul Campos from QILC,
Gil Yildiz from BCID. plus Carol Anne Riddell (from New York One News)
with her video camera. We were spread out across the front of the
building, partly blocking the entrance. We wore signs:
Sen. Bruno, How Many Must Die?
Save Home Care; Medicaid Cuts Kill
and passed out flyers that asked,
ls Tomorrow April Fool's Day or is it Doomsday.
referring to the April l State hudet deadline.
We had made an appointment for a few of us to meet
with Sheldon Silver's representative.
Shortly after the delegation left for this meeting, the
remaining dozen or so demonstrators
entered the building and demanded that
they be taken to Senator Bruno's office.
When the lobby guards refused, the
group blocked the Broadway doors.
The police came and locked the doors,
directing people to the Chambers Street
entrance. Councilmember Duane led
four or five of the protesters through
the lobby to the Chambers Street
entrance, which they blocked. Now the
building was sealed off.
Meanwhile, the meeting with Morrow
had ended and everyone except Joan
Kinzer, Carol Anne Riddell and I had
gone back downstairs. The three of us
went up to the 21 st floor, where
Senator Bruno has an office. We were
approaching the door at the end of the
hall when an attractive, well-dressed
woman emerged.
Can I help you?" she inquired.
almost timidly.
I explained that we were demon-
strating downstairs and that Joan and
I had come on behalf of DIA to find
out exactly what was in the Senate's
budget about funding Home Care.
We were looking for Senator Bruno's
representative.
That would be me. Won't ysu come in'?"
I told her that I had been calling her
boss's Albany office since Monday. I
was told that I had to speak to Mark
Kissinger. Senator Bruno's Programs
Director, but that he had not returned
my calls. Our hostess offered to get him
on the phone. Seconds later, an authori-
tative voice barked. "This is Mark Kissinger."
I explained that I was a Board member
of DIA and that I was calling in the
name of a group of disability rights
activists to find out what the Senate's
as yet unpublished budget said about
Home Care.
"What specifically do you want to know'?"
"The 100 hour cap?" I said.
"Eliminated. There is no hourly cap."
I was stunned.
"We're writing it up now. What else?" he snapped.
"Level I Housekeeping?"
"Restored."
"Lombardi?"
"Restored."
"What happened to McCaughey's budget'?"
"We threw it out. (Pause) 'What else'?"
"We need to see it in writing. Can you
fax it to me? Here? Now?"
"No, I don't have the authorization right now."
'When'?"
"I don t know when."
"I have to talk to the rest of my peo-
ple. We came here determined to sit
in, if necessary, until we hae in our
hands the Senate's Home Care pro-
posal. (Pause). I'm going to have to
call you back. We really need it in
writing. '
"Fine. Call me back." He hung up.
I just sat there for a moment, the
receiver still at my ear. I was elated but
wary. I hung up. Joan searched my face.
'Well what did he say ?"
I told her.
"And you believe him?"
"Definitely. What do you think we
should do? I'm afraid to go back down-
stairs. What if they don't let us back
up? Nadina and Frieda would strangle
me. But I really want to tell everybody
what Kissinger said, irnmediately."
At that moment, a rugged looking,
casually dressed middle-aged guy
strode in.
"Is this Senator Bruno's office?"
Judy Stupp (Bruno's representative)
answered in the affirmative.
"I'm Lt. --" (I've forgotten his
name). He flashed his badge. "Are you
Danny Robert?"
"Yes."
"Those people downstairs are block-
ing both entrances to this building.
Would you be so kind as to come down
with me and talk to them. I really don't
want to arrest anybody."
"I'll go down if Judy, here, goes with us."
"No problem, Daniel." (We were
already on a first-name footing.)
"But I can't promise they'll stop
blocking the doors. I'm not in charge or
anything. '
The lobby was deserted. except for
wheelchair users and cops. I quickly
related what Kissinger had said,
emphasizing his refusal to put it in
writing.
The Lt.: "So are you folks ready to
unblock the doors?" Silence. "We real-
ly can t let this continue you know.
He was very civil.
"We demand to he allowed to go up
to Senator Brunos's office. All of us.
"Right now." Anne Emerman had taken the reins.
Tom Duane backed her up. "These peo-
ple have a right to an answer. On Senator
Bruno's letterhead. They're not leaving
until they get it."
The Lieutenant turned to Ms. Stupp.
"Can they go up?"
She glared at Tom with distaste. "All
of them? I don't think there's enough
room for all of them. It's a small
office."
Anne: "Oh, come on. I was up there
with 20 people for a meeting with
Senator Goodman last week. You have
a large conference room up there.
There's plenty of room."
Judy couldn't very well deny it. So
we all went up, including Carol Anne.
There was no phone in the conference
room and no speakerphones in the
offices. We decided that Anne and I
would get Kissinger back on the line.
This time, Anne talked to him. He
confirmed what he had told me. Anne
asked specifically about "client-man-
aged" personal care, which I hadn't
thought of. He said the Senate's propos-
al mandates setting up pilot "patient-
managed" projects around the State.
Then he said something else, ominous
sounding. While there would be no for-
mal hourly cap, localities would be
given "strong incentives" to keep per-
sonal care hours to a minimum. He
wouldn't go into detail, saying only
that the onus would be on local social
service agencies. And he still main-
tained that he couldn't put anything in
writing.
Anne: "Fine. You tell your boss that a
dozen angry people with disabilities are
sitting-in in his Manhattan office. And
we're not leaving until we have what we came for."
Kissinger: "I'll see what I can do." He hung up.
We stayed until 5:30 and then we
went home, empty handed. Was it a
successful action? Yes and no. We cer-
tainly shook up 270 Broadway. And
I'm pretty sure they felt the ripples in
Albany. We gave Kissinger names and
fax numbers at CIDNY, BCID and
QILC. He promised to send us the
Home Care pages of the Senate's bud-
get bill (S 8000) as soon as possible,
which turned out to be a week later.
(Copies and commentary upon
request.) Carol Anne wrote a very nice
story, which ran on New York One News all of the
April 1st weekend (dupes on VHS, $5.00)
As of May 2, there still is no NYS
budget for fiscal 1995-96. Our friends
in the Assembly removed the disincen-
tive to assigning more than four hours a
day from their proposal, but the negoti-
ations are going on at this time and
there's no end in sight.
Throughout April, the fight-back move-
ment continued to build. On April 4, the
27th anniversary of Dr. King's assas-
sination, Rev. Al Sharpton led a
"March for Justice" from City Hall
Park to Wall Street.
The following week, at a Town
Meeting in Staten Island carried live by
New York One News, Pataki was booed and confronted
on camera about Home Care cuts dur-
ing the question and answer session by
three DIA members--Harry Wieder,
T.K. Smalls and Ellen Nuzzi.
On April 25, a coalition including
Act-Up, Coalition for the Homeless,
Housing Works, DIA, and organiza-
tions representing CUNY students,
Puerto Rican, Asian and single-mother
populations, and victims of police bru-
tality stopped traffic simultaneously at
the Manhattan and Brooklyn Bridges
and the Midtown and Battery Tunnels.
Demonstrators at all four sites chanted
"Our City--Shut It Down!"
Anne Emerman, Harry Wieder and
Frieda Zames were among the 75 peo-
p]e arrested at the Midtown Tunnel.
They were loaded onto a comman-
deered M-15 bus and taken down to
Central Booking at 1 Police P]aza, and
photographed and fingerprinted. In all,
185 people were arrested. Only Anne,
Harry, Frieda and Tom Duane were
released that evening. One hundred
eighty-one people, including many with
AIDS were kept handcuffed and locked
up in filthy overcrowded cells for up to
24 hours, without food or water.
The struggle goes on. We have just
begun to fight.
(Danny Robert can be reached at 280
Ninth Avenue, Apt. 4C, New York, NY
10001. Send a self-addressed, stamped
envelope for copies of printed matter.
Send a check for $5.00 and an insulated
mailer, self-addressed with $l.75 in
postage for the VHS tape.
DIA Members Around State Act
Against Pataki's Budget Cuts.
The Independent, a bi-weekly serving
the Hudson-Berkshire area in Columbia
County, recently carried a story by
Dolores Palmer, who has multiple dis-
abilities about how curtailing home
care would affect DIA members. It's
the same old story we've heard over
and over again. It's good to know that
our colleagues in other parts of the
State are protesting the horrendous pro-
posed budget cuts.
Pataki to Lift "Oppressive"
Health Care Regulations
Governor Pataki is lifting a series of
health care regulations termed by him
"oppressive," according to the New
York Times of April 5. He describes his
proposals as making "government less
burdensome for business."
Proposals include eliminating social
work from urban hospitals; state regu-
lations governing education and experi-
ence of emergency room staffs would
be studied to see if they could be
"streamlined"; hospitals would not
have to report every "adverse event" to
the State (adverse events range from
infection outbreaks and unnecessary
deaths to crimes and mechanical prob-
lems)--instead, hospitals would have to
report on a "minimal set of indicators."
Other regulations to be scrapped
include allowing nurses aides and aides
to physical therapists to perform some
jobs now done by nurses and physical
therapists. Hospitals would no longer
have to keep specially trained discharge
coordinators to help patients leaving the
hospital for home or another facility.
These and other proposals would not
go into effect immediately. Some
would require State legislative
approval, while others could be
imposed by the Governor, according to
the Times article. The Governor claims
that his proposals would save millions
of dollars and would lift an oppressive
burden from health care facilities.
There is speculation that these pro-
posals are an attempt to mollify the
powerful hospital and health providers
for the Governor's proposed Medicaid
cuts. Patient advocates see the move
as another depreciation of the quality
of health care in the State. Richard
Kirsch, executive director of Citizen
Action, said, "Here you are basically
letting the fox guard the hen coop."
Robert Jaffe, lobbyist for New Yorkers
for Accessible Health, and others took
issue, among other things, with
expanding the duties of less qualified
health care personnel, arguing that
they don't have enough training to
work with patients and spot serious
problems. He further pointed out:
"Being in a hospital is a scary experi-
ence. There is a need to ensure that
patients are treated delicately in what
is a trying experience."
Meanwhile, Dr. Barbara Ann
DeBuono, Commissioner of Health,
said the proposals were "just the beginning."
One Step Update
Frieda Zames and Robert Levine
The One Step Campaign committee is
streamlining the process of barrier
removal. It has developed a new four-
month schedule from the original site
visit to either an agreement to modify a
barrier or, if negotiations are unsuc-
cessful, to file a complaint. The com-
mittee is also working to create a list of
contractors, architects, and engineers
who have built good ramps or other
modifications.
The checker, the wheelchair or scoot-
er user, who makes the original contact
with the store or restaurant owner, is
also most significant as the final con-
tact. The communication and under-
standing between the owner and the
checker, who can now get into the
store, indicates that we are customers, too.
The Department of Buildings (DOB)
recently issued Technical Policy and
Procedure Notice (TPPN) #1/95 that
will make the process of removing one
step barriers more difficult and, in
some cases, will even eliminate small
businesses' legal responsibility to make
entrances accessible. Earlier TPPNs
#11/92 and #4/93 were designed to help
small businesses comply with the
Americans with Disabilities Act
(ADA).
The new TPPN does not serve the
interest of wheelchair users in New
York City because it restricts
access and options for creating
access by eliminating:
1) the ability to construct a ramp,
without a building permit, while
maintaining the step at the same
entrance;
2) the ability to construct wooden
interior ramps without a building
permit;
3) the use of wheelchair lifts.
During the Dinkins Administration,
the One Step Campaign urged NYC
Government to simpify the process
and reduce the expense of modifying
barriers that are readily achievable. The
earlier TPPNs came from this effort.
The One Step Campaign won a national
award for encouraging people with dis-
abilities to participate in barrier
removal and ADA compliance in their
communities.
Mark Leeds, Director of the NYC
Mayor's Office for People with
Disabilities, attempted to bring this
process to a grinding halt by persuading
DOB to accept the new TPPN.
Nevertheless, our efforts to remove bar-
riers continue as strongly as ever.
Neither Mr. Leeds nor DOB solicited
public input before adopting the new
policy. Eastern Paralyzed Veterans
Association and DIA strongly urge that
you make your voice heard. Call, FAX,
or write: Mr. Joel Miele, Commis-
sioner, Dept. of Buildings, 60 Hudson
Street, New York, NY 10003, (212)
312-8100, (212) 312-8065 (FAX).
Express your support for DOB's prior
interpretation of the Building Code that
facilitated access in a readily achiev-
able manner and your opposition to the
burdensome new requirements.
An Alternative Proposal for
Cutting NYC Transit Budget
March4, 1995
Letter to the Editor
New York Newsday
2 Park Avenue, 9th floor
New York, NY 10016
Dear Sir:
I must say I was amazed by Mr.
Mitchel Moss's column regarding tran-
sit cuts. The Transit Authority along
with its subsidiaries was originally cre-
ated because private enterprise could
not provide the service to the people of
New York to begin with. If we look at
the history of most of our bus depots
we would find that n1ost of them were
taken over by the city from various
transit companies. This is also true for
our rapid transit system.
The idea of increasing the number
of taxis seems ill-conceived at best.
One of the main reasons our bus ser-
vice suffers is because of the tremen-
dous amount of traffic, especially in
the Central Business District. The
passengers that rely on safe, afford-
able and reliable bus service are now,
according to Mr. Moss, able to fork
over an average of five dollars per
taxi ride. The handicapped have been
ignored in Mr. Moss's article. Point
of fact, if it was not for the bus many
of our handicapped citizens would
not be able to venture outside, or they
would have to pay exorbitant fares to
get around in a van.
I think transit could save millions
by cutting from the top manage-
ment levels, by combining its
MABSTOA subsidiary with that of
the Transit Authority Surface. By
combining the two agencies, the
money saved by eliminating dupli-
cation of paper work alone would
be in the millions. Transit should
also consider different fare struc-
tures to encourage an increase in
ridership along those routes that
are less traveled. To make bus ser-
vice more efficient in the Central
Business District, real bus lanes
should be created. For example, the
proposed trolley service across 42nd
Street should be scrapped but the street
itself be set up to accornmodate the bus
service. Why? It would not cost the
millions estimated to complete the trolley
service and local business would
not suffer the losses construction would surely bring.
Sincerely,
James Mahoney
Bus Operator
Mernber New Directions Caucus
TWU Local 100
New York 7imes, Sunday, March 12, 1995
Accessible Taxi in New York City
Robert Levine
Last fall, my wife and I were in Boston
visiting a friend and seeing the sights. I
found to my amazement that I could
travel about the area by taxi. I have a
motorized wheelchair that cannot be
folded up and stored in the trunk. In
New York City, although I can ride the
bus, I have to let the taxi go by. In
Boston, I could call a taxi and travel to
and from Brookline. The new accessible
Boston taxi has a low floor, so a wheel-
chair can roll in easily.
When I returned, I was determined to
have the same thing in New York. In
Boston, the police added 40 new taxi
medallions to the fleet of 1,525, all of
them modified Chrysler Caravans and
all accessible. Why not here? I wrote
letters to the NYC Taxi and Limousine
Commission and to Noach Dear, Chair
of the City Council Transportation
Committee. Frieda Zames and Anne
Emerman joined me. So far, I have received no reply.
But suddenly, a new wrinkle
appeared. New York City decided to
add 400 new medallions to the taxi
fleet. Since 1937, the number of medal-
lions has been frozen at 11,787.
Presently, the only way to get a medal-
lion is to buy one from a previous
owner, and the scarcity has driven the
price up to $200,000. At $200,000 per
medallion, NYC would generate
$80,000,000 from the 400 new medal-
lions over a three-year period.
We now have our own lawyer, John
Gresham from New York Lawyers for
the Public Interest, for the accessible
taxi issue. Together, we now know a lot
more than I did when I came back from
Boston six months ago. Some of it is
not good. We know that the wear and
tear of running a Chrysler Caravan is
much higher than the regular Boston
taxi. Because of this, no one was will-
ing to pay for a medallion for an acces-
sible taxi, so the 40 new medallions in
Boston were given away.
We have a lot of information on
accessible taxis in other countries (i.e.,
London, England; Vancouver, Canada;
and Sidney, Australia) but none in the
United States except for Boston.
However, through our lawyer, we have
a possible meeting with William
Considine, legal cousel for the Taxi
and Limousine Commission. We will
have more information in a future issue
of THE ACTlVlST.
Most important, if there is a hearing
next month at City Hall on the 400 new
medallions, we need many people to
testify about the need for an accessible
taxi. Please call me at (212) 529-3574
if you are interested in testifying.
Green Bus Line Chuzpah
Below is a verbatim copy of a policy statement issued by the Green Bus Line
to its drivers. An appropriate response is being written by DIA.
Green Bus Lines Policy in Connection with
Passengers Requiring the Use of
Wheelchair Devices
All people using common wheelchairs
(mobility devices that fit on lifts meeting
Access Board guideline dimensions)
including three-wheeled scooters and other
so-called non-traditional mobility devices,
are to he allowed to ride all wheelchair
accessihle vehicles. If the wheelchair cannot
be locked into the vehicle's securement
device, operators are to instruct the passen-
ger to wedge a wheel against the seat in
fronl of the wheelchair securement location
and apply the wheelchair's brakes.
Additionally, operators are to warn the chair
occupant and all other vehicle passcngers
that the mohility device is not secured prop-
erly and could present imminent danger of
injury inside the moving vehicle.
ln Memory: Howard Geld
Ellen Nuzzi
To our sorrow, on February 5 at the age
of 43, Howard Geld (better known as
Howie the Harp) died in his home of a heart attack.
Howie had devoted his life to advoca-
cy for those with psychiatric disabili-
ties. An ex-mental patient himself, he
was one of the foremost leaders in the
civil rights movement for people with
mental illnesses. To quote his obituary
in The New York Times (February 4),
"Mr. Geld was widely credited with
being a pioneer in advocacy for mental
patients, founding or co-founding many
organizations that are now part of
national and international movements."
Howie recognized that people with
psychiatric disabilities have much in
common with the larger community of
people with disabilities. In the 1980s,
he worked at the Center for Indepen-
dence in Berkeley, California, heading
up a program for people with psychi-
atric disabilities, while also being a
strong advocate for all people with
disabilities.
On July 24, 1994, Howie was the
Master of Ceremonies for the rally of
the third annual Disabilities Indepen-
dence Day March (DIDM). He was
also an active participant in the plan-
ning meetings of both DIDM '94 and,
prior to his untimely death, DIDM '95.
We had planned to ask Howie to be our
MC again this July 23. He was a wonderful Master of Ceremonies.
Howie, you will be greatly missed by us all.
In Memory of Alan Leegant
Paula Wolff
What to say?
A life cut short by a failing heart that
couldn't be as active as he was in mind and spirit.
Dedicated to the struggle for equality for people with disabilities.
A fighter. An activist.
A keen sense of social justice and a vision of what the world could be.
A loyal friend and a partner to Loretta.
A presence in DIA for 17 years.
A caring, giving special person who will be greatly missed.
He opened his heart and home to people in need.
We'll picture him beside us as we protest and demonstrate.
Donations in Alan's memory can be
made to Disabled in Action, P.O. Box
30954 Port Authority Station, New
York, NY 10011-0107 or to Bronx
Independent Living Services, 3525
Decatur Avenue, Bronx, NY 10467.
Condolence cards can be sent to his
partner, Loretta Richter, at 113 Pugsley
Avenue, Bronx, NY 10473, or to his par-
ents: The Leegant Family, 101
Cherrywood Lane, Southbury, CT 06488.
A memorial ceremony will be held at
the next DIA General Membership
Meeting, Sunday, May 21, l:30-2:00
p.. (the meeting will follow from 2:00
to 5:00 p.m). ee calendar on page 20.
Ed Roberts, An Original Thinker and Fighter: 1939-1995
Robert Levine and Frieda Zanes
I (Robert) met Ed Roberts, one of the
major leaders of the modern disability
rights movement, when we were both in
college at Berkeley in California. He
had just founded the Center for
Independent Living (CIL), located four
blocks off campus. CIL included ser-
vices such as free counseling; off-cam-
pus housing referrals; its own repair
crew that fixed wheelchairs and modi-
fied cars and vans for people who could
drive; and a pool of reliable aides for
people who need help bathing, dressing,
toileting, and eating. What made CIL
new and different is that it was primarily
run by people with disabilities.
Ed got his Bachelor's and Master's
degrees from Berkeley, and later taught
political science there. When Jerry
Brown was elected Governor of
California in 1975, he appointed Ed as
Director of the State Department of
Rehabilitation. Ed held that job for
eight years, overseeing more than 2,500
employees and a budget of $140 million. The original CIL was the model
used to develop satellite agencies in every county, and today, the
Department has 28 State independent living centers.
In 1983, Ed Roberts and Judy Heumann* founded the World Institute
on Disability (WID) in Oakland, California. Ed traveled to Russia,
Australia, Japan and France to raise public awareness about disability and
independent living. In 1984, he received a MacArthur Foundation
Award that he used to pay for his WID activities.
I (Frieda) heard about and wrote about Ed Roberts as the symbol of indepen-
dent living long before I ever met him. Therefore, I was somewhat in awe of
him. He was one of the originators of the principles of independent living
and disability rights, concepts that are intricately linked. Consequently,
the con sciousness of people with disabilities
was raised and we no longer felt like second-class citizens. We now feel
proud because we are part of a social and political movement, and because he
showed us the way to change the world forever.
Ed realized that people with different disabilities have much in common. We
all need access to society, although
those access needs take different forms.
For example, people with motor impairments need buildings and trans-
portation to be barrier-free; people with hearing impairments need sign lan-
guage interpreters and assistive listening devices at public meetings; and
people with visual impairments need printed materials to be put in large
print, braille, and/or tape. These are some of the most obvious, but
the list goes on.
Recognizing our commonality rather than our differences, created the
largest minority, a potentially significant political power. Furthermore,
many of our access requirements, such as barrier-free design, improved
lighting and signs, and clearer audio messages in public areas helped
others who did not consider themselves disabled.
Last year, as chair of the rally committee for the 1994 Disability
Independence Day March (DIDM '94), I spoke to Ed several times. We
were delighted that he was interested in participating
and immediately asked him to be both a Grand Marshall and a speaker.
However, a few days before DIDM '94, Ed called me to say that he was unable
to come because of illness. I told him that he would be missed but that he
would be with us the following year for DIDM '95. And Ed Roberts and his
innovative ideas and his fighting spirit will be with us.
*Judy Heumann was the founder of
DIA in 1970. She was appointed by
President Clinton as Director of the
Office of Special Education and
Rehabilitation Services (OSERS).
Excerpts from a Letter to the Editor
Dear Friends:
Thank you for the great delight of receiving today the DIA Activist. I
returned on my scooter from the hospital after retina correction
surgery, and (with one eye) read non-stop the entire newsletter.
I was so pleasantly amazed at the seriousness, the maturity,
the sensitivity and sensibility of all our friends, whom
writers wrongly diagnose as disabled ... If only our world were a
place where everyone gets a chance. With great love and admiration,
I congratulate all of you and from the bottom of my very old
(and broken) heart, I wish you to be blessed the courag to be creative,
to sneak out, to demand firness and justice. deal with ..
civil rights and real human rights ...
Jenny Spinoza
Editor's Note.
On behalf of all the writers, we thank Ms. Spinoza for her kind words.
She is active in Parents of Murdered Children. Her daughter died
unnecessarily in a nursing home. (patients,
Accessible Polling Site Lawsuit Settled
Frieda Zames
On December 19, 1994, several DIA board members and DIA's attorney,
Jane Greengold Stevens, agreed to settle the ten-year polling access
lawsuit, since only five out of 1,337 polling sites are now inaccessible.
(See addresses of the five on page 16.)
In June 1984, after four years of non-
compliance with the NYS Election
Law, DIA filed a class action lawsuit in
State Supreme Court, naming the NYC
and NYS Boards of Elections as defen-
dants. Even though absentee ballots
were available to us, we were not satis-
fied because we were not absent. Less
visibility at the polls limited our influ-
ence on public officials and diluted our
impact on the electoral process.
At a 1981 conference celebrating the
International Year of Disabled Persons,
Mayor Koch challenged the disability
community to become as politically
strong as the elderly community, by
voting. Although he was surprised
when informed that less than one-third
of the polling sites in NYC were physi-
cally accessible (419 out of 1,337), he
continued to ignore the 1980 amend-
ment to the NYS Election Law requir-
ing that all polling sites in the state
have at least one accessible entrance.
A few months before the 1984 elec-
tion, without consulting with the dis-
ability community, an ill-conceived
scheme was devised by the Mayor and
the Commissioner of the Board of
Elections to provide access without
complying with the law. Every person
on the permanent absentee voting list
was offered transportation to the near-
est accessible polling site. (A special
booth was brought into each of these
polling sites.) Absentee voters had
about a week to respond. Of the 70,000
registered voters, 40 responded. Most
were confused by the sudden offer and
therefore feared losing their vote. In an
attempt to pit one minority group
against another, people on long lines in
Harlem and other areas were told by
Board of Election staff that voting
machines were in short supply because
they were given to disabled people.
During the 1985 mayoralty campaign,
Koch gave DIA lawyers verbal assur-
ances that he was interested in settling
the polling site lawsuit. In fact, Koch
sent campaign newsletters to thousands
of disabled voters, taking full credit for
making polling sites accessible in the
previous year and promising to contin-
ue these efforts. He never mentioned
the lawsuit. Although negotiations con-
tinued, the lawyers representing NYC
would not sign a settlement agreement.
(We should have been suspicious.)
Shortly before the election, Koch
announced that he had changed his
mind and would not settle the lawsuit.
Therefore, we had to return to court.
Meanwhile, the Boards of Election of
Oneida County and the City of Utica in
upstate New York agreed to settle a
similar lawsuit based on the NYS
Election Law.
In 1986, DIA won the lawsuit, but the
City continued to procrastinate until
DIA filed a contempt motion in 1988.
NYS Judge Kramer took an active
interest in the case, forcing the City to
make many more polling sites accessi-
ble by 1989. However, problems still
existed. One of the most difficult for
older people was the need to change
some polling locations. Changing
polling sites moves them further from
some older people and closer to others.
As NYC becomes more accessible, the
number of polling locations should be
increased to solve this problem.
Brooklyn: P.S. 119
P.S. 272
Queens: P.S. 164
P.S. 2
P.S. 176
We urge people who are denied
access to polling sites to help find
appropriate accessible locations in their
area. For information, you may call
either Jane Stevens (718) 237-5500, or
Fneda Zames (212) 260-0423.
The DIA lawsuit took the work of
many people, including our lawyer,
Jane Stevens, and NYS Judge Kramer.
The best way to show our appreciation,
while helping ourselves at the same
time, is by voting at the polls in every election.
Inaccessible polling sites:
3829 Avenue K
101-24 Seaview Avenue
137-15 77th Avenue
75-10 21st Avenue
l 20-45 23rd Avenue
Disabled in Action and the Americans with Disabilities Act
Frieda Zanes
On February 13, 1995, New York
Lawyers for the Public Interest
(NYLPI) filed Title II ADA complaints
with the U.S. Department of Justice on
behalf of DIA against the NYC
Department of General Services and
the NYS Office of Court Adminis-
tration concerning 15 courts in the City
that are inaccessible to people with dis-
abilities. The charges in the complaint
are based on a report entitled "Survey
of Access to New York State Courts for
Individuals with Disabilities," released
early in 1994 by the NYS Commission
on Quality Care for the Mentally
Disabled and the New York State Bar
Association. The report concluded:
"We have a long way to go before the
courts fully meet the promise of the
Americans with Disabilities Act."
On January 27, 1992, DIA demon-
strated at the Empire State Building to
announce that we had filed the first
Title IIl ADA complaints with the U.S.
Department of Justice against the Inter-
Continental Hotel, a municipal credit
union, an office building, and the
observation decks of the Empire State
Building. Soon after, a Saturday Niht
Live cartoon showed a very long ramp
of appropriate accessibility dimensions
reaching from the 86th floor observa-
tion tower of the Empire State Building
to Central Park.
Visiting the Empire State Building's
observation tower recently, I was
impressed by the architectural modifi-
cations, which are in the same Art Deco
style as the building. The railings are
formed so that a wheelchair user has an
unobstructed view in four different
directions. The magnificent view of
New York City is breathtaking. It
makes me proud to live in an exciting
and forward-looking city, of a great and
progressive state, in a country with an
ADA. Let us hope that the present City,
State and Federal Administrations don't
blow it.
NYLPI* Wins Case on Non-Consenting Psychiatric Patients
In T.D. et al. v. NYS OJfice of Mental Health, et al., February 28, 1995,
Justice Edward Greenfield of the New York State Supreme Court found that
New York State Office of Mental Health (OMH) regulations allowing
experiments to be performed on patients in psychiatric centers were
"invalid and unenforceable." Incompetent patients can no longer be placed
in risky, non-therapeutic experiments with the consent only of a family
member or self-avowed "close friend," and OMH will be no longer be able to
administer experimental procedures or drugs to psychiatric patients without
the patients' knowledge or over their objections.
For more information, call Ruth Lowenkron at NYLPI: (212) 727-2270,
voice; (212) 727-2997, TTY.
*New York Lawyers for the Public Interest
DIDM Still Needs Your Help
On Sunday, July 23, the 1995 Disability Independence Day March (DIDM '95)
will celebrate the 5th anniversary of the Americans with Disabilities
Act (ADA) by focusing on ADA enforcement and compliance. A lot of work
remains to be done. See the calendar on page 20 for the schedule of
general planning meetings. Call the people listed below to volunteer
for specific activities. Be part of this gala celebration.
General Information
Outreach
Outreach to Deaf
Volunteers
Issues Awareness
Media Relations
Mailing Parties
Fund-raising
March Logistics
Rally Program
Naomi Bodo 212-977-6029
Ellen Nuzzi 718-834-9271
Phil Bennett 718-339-0404
Al Lepre 516-997-1037 push 1 for voice; 2, FAX, 3 for TDD
Alice Crespo 718-956-6450
Michele Clark 212-961-8500
Kipp Watson 212-761-0333
Marty Sesmer 212-684-6287
Pat Costello 212-483-9600
Gerard Nuzzi 718-834-9271
Jessica Mayer 718-834-9271 (leave message)
NYLPI Firm's Settlement Promotes Classroom Integration
The New York City Board of Education has agreed to a settlement in
a case that will set a precedent for protecting the
right of children with disabilities to receive their education in the
least restrictive environment.
The plaintiffs, Alba and Anastasia S., are very bright ten-year-old
twins with cerebral palsy. Anastasia is verbal and
was placed in a mainstream class; Alba is non-verbal and was placed in
a special education class. Alba received national attention in
February 1993, when Anastasia asked President Clinton in a
televised discussion why her sister could not also be in a mainstream class.
The federal Individuals with Disabilities Education Act (IDEA) gives
children with disabilities the right to receive educational and related
services in the least restrictive environment.
As a result of the publicity, the New York City Board of Education placed
Alba in an integrated class the following school year. The Board did not,
however, provide the adaptive equipment or the training to school personnel
that would allow her to benefit fully from this placernent. The Board also
failed to provide necessary equipment and services for Anastasia.
Weil, Gotschal & Manges, a member firm of New York Lawyers for the
Public Interest (NYLPI) represented the twins pro bono at special
education hearings in late 1993 and settled with the Board last October.
In the settlement, the Board agreed to give both girls motorized
wheelchairs during school hours, to train Alba in the use of
her adaptive equipment, to train substitute paraprofessionals regarding the
twins' medical needs,, and to train the school's staff regarding the
integration of children with disabilities into mainstream classes.
The Board also agreed to make periodic evaluations of the children's
progress.
NYLPI referred the case to Weil, Gotshal & Manges and provided the
firm with technical assistance. For copies of the settlement, call Cary
LaCheen at NYLPI: (212) 727-2270, Voice; (212) 727-2997, TTY.
Medicare Home Health Benefits.
Medicare beneficiaries who are homebound are entitled to up to 35
hours a week of skilled nursing and home health aide services
as well as skilled therapy services for a finite period of time,
provided they are reasonable and necessary.
To find out eligibility requirements, coverage, means of
applying and helpful hints on obtaining benefits, request
a leaflet entitled "How to Receive the Medicare Home
Health Benefit" from Medicare Benef1ciaries Defense
Fund, 1460 Broadway, 8th Floor, New York, NY 10036-7393, (212) 869-3850.
Queens Borough Public Library Database on Human Services.
The library supplies information on health and human services
available to Queens residents through a database called InfoLinQ.
All the agencies represented are non-profit or governmental,
or provide subsidized or free services to the general public.
InfoLinQ is accessible at the central library, or through
the Electronic Doorway with a personal computer and a modem. Contact
Information Services Division,
Queens Borough Public Library,
89-11 Merrick Boulevard, Jamaica, NY 11432.
New Magazine for Those with Down Syndrome.
The National Down Syndrome Society has begun publishing News 'n Views,
written by and for teens and young adults with Down Syndrome.
Edited by Chris Burke of Life Goes On, past issues have included articles
on getting a job, movie reviews, etc. To subscribe, contact the
National Down Syndrome Society, 666 Broadway, New York,
NY 10012, (212) 460-9330.
DISABLED IN ACTION CALENDAR
All DIA meetings are open.
For van transport to membership meetings, call your Access-A-Ride carrier
(Brooklyn (718) 265-0250; Bronx (718) 597-4440;
Manhattan (212) 533-3700; Queens (718) 658-6540;
Staten Island (718) 970-6070).
For DIA information and/or a sign language interpreter,
call Olga Hill (718) 261-3737,
or CIDNY (212) 674-5619 for TDD.
DIA meetings are held in a smoke-free space. Also, some members are
sensitive to fragrances and beeping devices such as watches and pagers.
To add items to the agenda, call Paula Wolff (212) 255-2586.
[dates deleted]
June 26 Mon 2-3 pm Disabled In Action Speaks Radio, WBAI (99.5 FM)
We no longer have a regular time slot
for DIA Speaks.
Call WBAI (212) 279-()707 and cornplain.
Sept 24 Sun 1:30-5 pm DIA General Membership Meeting
Oct 15 Sun 11 am DIA Board Meeting
Conference Board Call
Oct 22 Sun 1:30-5 pm DIA General Membership Meeting
The DIA ACTIVIST is published by Disabled In Action of
Metropolitan New York. Address:
DIA, Post Office Box 30954, Port Authority Station,
New York, NY 10011-0109
(718) 261-3737.
DIA is a civil rights, non-profit, tax-exempt organization.
Taped editions of the DlA ACTIVIST
are available. Call Alice Crespo, (718) 956-6450.
Editorial Board
Shelly Buslowitz
Michael Imperiale
Joan Kinzer
Robert Levine
Ellen Nuzzi
Paula Wolff
Frieda Zames
Editor
Nancy Rolnick
The DIA ACTIVIST welcomes all comments from its reders. We also
encourage the submission of articles, poetry, cartoons, etc. and
suggestions for articles. We reserve the right to edit materials.
Editorial meetings are open to all members of DIA who want to
participate. Please address submissions to Nancy Rolnick, 20 East 9th
Street, Apt. 2V, New York, NY 10003.
1995 Membership Form
Please join in our struggle for full civil and human rights.
DIA hopes to remain in the forefront of all issues concerning
persons with diverse disabilities. One way you can help is through
your membership.
Annual dues are $3.00 to $25.00, so please be as generous as you can. Your
check, payable to Disabled in Action should be mailed to
Doris M. Seligman
Membership Chairperson
39-65 52nd Street #3V
Woodside, NY 11377
Name
Address
Telephone (Indicate if TDD)
$____ Dues enclosed
A Taped edition of DIA ACTIVIST is available.
Patt Bromberger, President, S.O.F.E.D. U.P. - pa...@its.brooklyn.cuny.edu
Student Organization for Every Disability United in Progress @
Brooklyn College, 1303 James Hall, 2900 Bedford Ave. Brooklyn, NY 11235
718-252-9230 - pa...@squid.tram.com
"Find out just what any people will quietly submit to and you
have the exact measure of the injustice and wrong which will be
imposed on them." - Frederick Douglass