DIA Activist May 2001, Disabled In Action of Metropolitan New York

Articles

Making a Commitment to Activism by Anthony Trocchia
Letters to the Editor
Supreme Court Rules Against People with Disabilities in Garrett Case
Americans with Disabilities Act and Working
711 Relay Service and Speech to Speech Relay Available in New York
Moving Right Along
Accessible Taxis by Robert Levine
Ideas for Increasing the Disability Constituency’s Vote by Frieda Zames
A Letter to the New York Daily News about Inaccessible Subways
A Different Approach by Porzia Danisi
Book Talk: The Disability Rights Movement: From Charity to Confrontation by Nancy Rolnick
Travel News: Accessible Traveler’s Database, Greyhound, Accessible Bus Service to JFK and LaGuardia Airports
Train Safety Questions Following Amtrak Accident Near Syracuse
For Sherry by Philip Bennett
Rae Unzicker Tribute
Victory in Federal Paratransit Case
Florida Adopts ADA Notification Flyer for Businesses
The Nation’s Largest Nonprofit H.M.O. Agrees to Become Accessible
Justin Dart on Bush Tax Cut
The FDR Memorial: Who Speaks From the Wheelchair? by Rosemarie Garland-Thomson

Making a Commitment to Activism

by Anthony Trocchia

As you all know, DIA meets once a month. This year, DIA will meet every month. It concerns me a great deal that most members do not make a commitment to the organization. People seem to drift in and out of DIA. There are no attendance requirements at DIA, yet I feel a commitment should be made to regularly attend meetings. DIA was not created for entertainment purposes so that people could come to meetings when they have nothing else to do on a Sunday.

For too long, the same core group of activists have been working on many issues because no one else is available to help out. I know not everyone is radical. That’s okay. Yet, there’s so much to be accomplished if more folks would become involved. I started attending DIA meetings in 1991. I never felt part of the organization until I got involved. I worked on the issue of allowing Personal Care Attendants to ride for free on buses when traveling with clients. I stuck with it because it was important to me and I believed strongly in what I was working toward. My efforts paid off in a big way.

The objective of activism is to take on something of interest to you and to work on it. That is the only way to make sure you stick with it for the long haul since changes do not come about quickly. I assure you that the reward is a great feeling about yourself and the Disability Rights Movement. When you are part of the change process, your role transforms from that of observer to participant. Only then can you feel a connection to other members and to the overall philosophy guiding the work being done.

I urge you to consider making a commitment to Disabled in Action. There’s a lot that needs to be done. Everyone’s help would be greatly valued. You can make a difference while simultaneously gaining self-respect. The decision is yours to make. Changes will not occur any other way. E-mail me at https://www.disabledinaction.org/contactus.html or call me at 1-718-261-3737 if you want to join a committee or help out.

Letters to the Editor

Note from the editor: This issue marks a new section, Letters to the Editor. We encourage your comments and ideas about what you read in the ACTIVIST or other disability topics. All letters will be considered for printing if they have your name, address, and phone number on them, but you may request that we do not print your personal information. Letters should be one page or less, and should not personally attack any individuals. Letters may be edited for length or style.

Proposal for a Working Group on Repressive Psychiatry

I would like to propose that DIA create a working group on repressive psychiatry. Although DIA as an organization, and DIA members, have supported several grass roots efforts against forced drugging and other discrimination, DIA spokespeople often do not fully understand these issues.

I am a DIA member and a survivor of repressive psychiatry many years ago. It harmed my life, and I have made my life in spite of it. I am not saying that I have “overcome” a disability, namely mental illness. I am saying that I have spit in the face of the people who said you deserve to be locked away and have your personality destroyed by drugs.

I am also a member of the psychiatric survivor/ex-psychiatric inmate movement. This movement began in the 1970s; I joined the New York group Project Release in 1978. This group is no longer active but old members form a network in the city, joining the newer “consumer” movement which primarily seeks better mental health services, although many consumers also oppose forced treatment, particularly outpatient commitment.

There are many issues on which it would be helpful to work together. The Olmstead decision, for instance, affects us in some different ways than it affects people with physical disabilities. If we work together, we may be able to free all our people. At the recent ADAPT demonstration, the chants and signs were about nursing homes, but one young woman came back to ask a question about people with mental illness & mental retardation getting out of institutions (which was the situation of the Olmstead plaintiffs, who were pictured on the demonstration flyer). I support everybody’s struggle to be free because I know what it means, yet I would have wished to add a voice and effort saying that my people need to be free too, and asking how is Olmstead going to help us?

Please let me know your thoughts on this.

Tina Minkowitz
tminkowitz@earthlink.net

Supreme Court Rules Against People with Disabilities in Garrett Case

On February 21, 2001, the Supreme Court ruled that state employees can no longer sue their employers for money damages under the ADA. The ruling was 5 to 4. It was a blow to the rights of people with disabilities.

The decision continues this Supreme Court’s trend of chipping away at federal civil rights protections in the name of states’ rights.

In doing so, the Court virtually ignored the extensive record of discrimination by states against people with disabilities. As Justice Breyer so aptly noted in his dissenting opinion, “the legislative record bears out Congress’ finding that the adverse treatment of persons with disabilities was often arbitrary or invidious. …It is difficult to see how the Court can find the legislative record here inadequate. …The record indicates that state governments subjected those with disabilities to seriously adverse, disparate treatment.”

The ADA was the result of strong bi-partisan efforts in Congress, and was signed into law by former President Bush (who also filed a brief in the Garrett case in support of the ADA). Disability advocates hope that the current Bush administration will continue to strongly support and enforce the ADA.

While this decision rolls back the protections afforded by Congress, it is imperative to note that this decision affects only the ability of people with disabilities to sue state employers in federal court for money damages in employment discrimination cases.

The ruling does not prevent individual suits against a state employer for injunctive relief, nor does it bar suits initiated by the federal government for money damages.

The ruling likewise does not bar suits for money damages against private employers or local governments.

Perhaps most importantly, the Court explicitly declined to rule on the constitutionality of Title II of the ADA, which applies to state and local government programs.

The Garrett case involved two state employees with disabilities in Alabama – Patricia Garrett, a registered nurse with breast cancer, and Milton Ash, a corrections officer with severe asthma. Both suffered job discrimination because of their disabilities.

COMMENTS on the Garrett Ruling:

The Court went too far

E J Dionne, Jr., in a February 23, 2001 Washington Post editorial entitled, “The Overreaching Court,” commented on the decision. Here is an excerpt from his editorial:

Two remarkable things happened in this case. The first is the court’s open admission that it is in the process of making the 11th Amendment say more than it actually says. For the record, let’s quote the amendment in its entirety: “The judicial power of the United States shall not be construed to extend to any suit in law or equity, commenced or prosecuted against one of the United States by citizens of another state, or by citizens or subjects of any foreign state.”

Writing for the majority, Chief Justice William Rehnquist first admits what the amendment actually says and then says what he and his colleagues in the majority want it to mean. “Although by its terms the amendment applies only to suits against a state by citizens of another state, our cases have extended the amendment’s applicability to suits by citizens against their own states.”

… [This is] the basic question: How can anyone in this majority claim it’s only interested in strictly construing the words of the Constitution? By citing the authority of its own cases, the court is simply invoking its own power. Isn’t it a distortion of the 11th Amendment to tell citizens they can’t sue their own states?

We and Our Politicians Must Protest the Garrett Decision

Larry D. Kramer, a professor of law at New York University, wrote an editorial called, “The Supreme Court v. Balance of Powers” in The New York Times on March 3, 2001. He talks about the history of the Supreme Court and how over the years it has overreached its powers. It is Kramer’s view that a liberal Court is a relative rarity. He says (in an excerpt):

The Garrett ruling is not really surprising. For nearly a decade, the court’s five conservative justices have steadily usurped the power to govern by striking down or weakening federal and state laws regulating issues as varied as gun sales, the environment and patents – as well as laws protecting women and now the disabled. Not in every situation, of course, but the general blueprint is unmistakable. Rather than serving to chasten the conservative court, the experience of deciding Bush v. Gore may have further emboldened it.

Protest against this seizure of legislative authority has been muted and sporadic, apparently reflecting the general assumption that not much can be done. Not so. Presidents and Congresses in the past never hesitated to reprimand an overreaching court.

Under Thomas Jefferson’s guidance, Congress punished the Supreme Court by delaying its term for a year, threatening to impeach judges and ordering the justices to travel around the country hearing minor disputes. Andrew Jackson and Abraham Lincoln ignored what they regarded as unsupportable decisions. Franklin Roosevelt proposed increasing the size of the court to dilute an errant five-member majority. And the Constitution gives Congress control over the court’s budget and its jurisdiction, powerful tools that the framers deliberately left in political hands.

Our system of separation of powers depends on balance among the branches. It does not give any branch license to run roughshod over the others. When the court upsets this balance, the other branches have a duty to respond, not necessarily through extreme tactics, but at least through trenchant public criticism. Yet the conservative court’s decisions have met with only tepid responses from critics in the rest of government. This may be because liberals and moderates are inhibited by a false belief that the Supreme Court is a fragile institution that needs to be protected from public censure. Liberals are largely responsible for promoting this myth in the years after Brown v. Board of Education, in reaction to the relentless conservative attack on the court in the days of Chief Justice Earl Warren. Many liberals now assume that criticizing the court plays into the conservatives’ hands.

Precisely the opposite is true. Conservatives never hesitate to attack a court that does things they don’t like. Just ask the justices of the Florida Supreme Court. Liberals never used to hesitate, either. By sitting on their hands now, critics merely encourage the court’s conservative majority.

The court has survived, and thrived, for more than two centuries, despite regular confrontations with the other branches of government. It cannot and should not be treated as if its rulings are not political or are above censure. No one is suggesting that we savage the court every time it renders an unpopular decision. But vocal opposition is appropriate when the court consistently interprets the Constitution in a way that does not protect individual rights, but limits the ability of Congress to do so.

The conservative justices seem to have grown comfortable reading the Constitution in ways that ignore precedent, past practice and the considered judgment of other government institutions. This must be resisted. We need to hear from our political leaders.

A Proposal to Limit Supreme Court Justices’ Tenure

“The real problem here is the smugness born of lifetime tenure. Basically no federal judge can be removed from office once confirmed, except for serious misconduct or crime,” says Marianne Means, writing in the February 28, 2001 Miami Herald (“Let’s Limit Tenure of Supreme Court Justices”). She goes on to say that “Scalia and the others have abused the privilege. It is time we changed that.” She suggests either having a specific term after which federal judges retire, or letting voters decide like they do for the other two branches of government, the legislative and executive branches.

It would take three-fourths of the states ratifying a constitutional amendment that Congress would have to first pass. Means thinks that it would be difficult to get it passed and ratified, but possible.

Here We Go Again – More Attacks on Disability Civil Rights Laws

The Supreme Court has been asked to review the constitutionality of Section 504 of the Rehabilitation Act. Section 504, as you know, was a precursor to the Americans with Disabilities Act (ADA), and it prohibits discrimination on the basis of disability by recipients of federal funds. In this case, called Arkansas Dept. of Education v. Jim C, the parents of a child with autism alleged that the Arkansas Department of Education failed to comply with its obligations under certain federal statutes, including Section 504. The Department claims that the federal government did not have the power to subject states to lawsuits under Section 504.

The disability community will have to gather information on how Section 504 has benefited people with disabilities and will be planning a strategy to defend Section 504. If this case does not get heard by the Court, other cases will most certainly be coming through the appeals process.

The Supreme Court has already agreed to hear two more ADA cases, one against Toyota which is a clarification of what the definition of disability is. How much does an impairment or disability have to affect someone’s life before they are considered disabled and entitled to accommodations under the ADA? Another case is against US Airways in which the question of what is a reasonable accommodation is going to be examined.

Americans with Disabilities Act
and Working

Social Security Administration;
Equal Employment Opportunity Commission
U.S. Department of Justice; Civil Rights Division
October 2000

ACTIVIST Editor’s note: Most complaints and lawsuits filed with the EEOC are not ruled in favor of the person with a disability.

There are more opportunities now than ever before for people who are receiving SSDI and SSI benefits to learn job skills and find permanent employment. If you are seeking a job or are new to the workforce, you should become familiar with the Americans with Disabilities Act of 1990 (ADA), a federal civil rights law designed to prevent discrimination and enable individuals with disabilities to participate fully in all aspects of society. One fundamental principle of the ADA is that individuals with disabilities who want to work and are qualified to work must have an equal opportunity to work. This brochure answers questions you may have about your employment rights under the ADA.

How do I know if I am protected by the ADA?

To be protected, you must be a qualified individual with a disability. This means that you must have a disability as defined by the ADA. Under the ADA, you have a disability if you have a physical or mental impairment that substantially limits a major life activity such as hearing, seeing, speaking, thinking, walking, breathing, or performing manual tasks. You also must be able to do the job you want or were hired to do, with or without reasonable accommodation.

What are my rights under the ADA?

The ADA protects you from discrimination in all employment practices, including: job application procedures, hiring, firing, training, pay, promotion, benefits, and leave. You also have a right to be free from harassment because of your disability, and an employer may not fire or discipline you for asserting your rights under the ADA. Most importantly, you have a right to request a reasonable accommodation for the hiring process and on the job.

What is a “reasonable accommodation”?

A reasonable accommodation is any change or adjustment to a job, the work environment, or the way things usually are done that would allow you to apply for a job, perform job functions, or enjoy equal access to benefits available to other individuals in the workplace. There are many types of things that may help people with disabilities work successfully. Some of the most common types of accommodations include:

physical changes, such as installing a ramp or modifying a workspace or restroom;
sign language interpreters for people who are deaf or readers for people who are blind;
providing a quieter workspace or making other changes to reduce noisy distractions for someone with a mental disability;
training and other written materials in an accessible format, such as in Braille, on audio tape, or on computer disk;
TTYs for use with telephones by people who are deaf, and hardware and software that make computers accessible to people with vision impairments or who have difficulty using their hands; and
time off for someone who needs treatment for a disability.

What should I do if I think I might need a reasonable accommodation?

If you think you might need an accommodation for the application process or on the job, you have to request one. You may request a reasonable accommodation at any time during the application process or any time before or after you start working.

How do I request a reasonable accommodation?

You simply must let your employer know that you need an adjustment or change because of your disability. You do not need to complete any special forms or use technical language to do this. For example, if you use a wheelchair and it does not fit under your desk at work, you should tell your supervisor. This is a request for a reasonable accommodation. A doctor’s note requesting time off due to a disability or stating that you can work with certain restrictions is also a request for a reasonable accommodation.

What happens after I make a request for a reasonable accommodation?

Once you have made a request for a reasonable accommodation, the employer should discuss available options with you. If you have a disability that is not obvious, the employer may request documentation from you demonstrating that you have a disability and explaining why you need a reasonable accommodation. You and the employer should work together to determine an appropriate accommodation.

What should I do if I think my ADA rights have been violated?

You should contact the nearest office of the Equal Employment Opportunity Commission (EEOC). Someone will help you determine whether you should file a charge of discrimination. Charges may be filed with the EEOC in person, by mail, or by telephone.

There are strict time frames for filing charges of employment discrimination. In most states, you have 300 days from the time the alleged discrimination occurred to file a charge, but in some states you may have only 180 days. The EEOC field office nearest you can tell you which time period applies to you. However, you should file a charge as soon as possible after you believe the discrimination occurred.

To contact the EEOC, look in your telephone directory under U.S. Government or call 1-800-669-4000 (voice) or 1-800-669-6820 (TTY).

Is there any cost to file a charge?

No. There is no cost to file a charge.

Do I need a lawyer to file a charge?

No. You may file a charge on your own without a lawyer, though some people do choose to retain one. Your local bar association may be able to help you locate a lawyer, and many communities have organizations that can provide free legal services or legal services at a reduced rate to people who qualify for them.

What happens after I file a charge with the EEOC?

First, the EEOC notifies your employer that a charge has been filed. In some instances, the EEOC will suggest mediation as a way of resolving the charge. Mediation is a process by which an impartial party tries to help people resolve a dispute. Mediation is voluntary, free, and completely confidential.

If a charge is not referred to mediation or if mediation is unsuccessful, and the EEOC determines that a violation has not occurred, your charge will be dismissed and you will be sent a letter telling you that you may file your own lawsuit.

If the EEOC concludes that you were discriminated against, it will attempt to settle the claim informally. If this is unsuccessful, the EEOC will decide whether to bring a lawsuit or issue you a letter giving you the right to file a lawsuit on your own.

For more information about work support, contact the Social Security Administration at:

1-800-772-1213 (voice) / 1-800-325-0778 (TTY)
http://www.ssa.gov/work

For more information about the ADA, contact the Equal Employment Opportunity Commission (EEOC) and the Department of Justice (DOJ) at:

EEOC 1-800-669-4000 (voice) / 1-800-669-6820 (TTY)
http://www.eeoc.gov/

DOJ 1-800-514-0301 (voice) / 1-800-514-0383 (TTY)
http://www.usdoj.gov/crt/ada

For free information about many types of reasonable accommodations, contact the
Job Accommodation Network at: 1-800-526-7234 (voice/TTY)
http://janweb.icdi.wvu.edu/

Publication Number ADA-000 ; ICN 951750 Last update March 2, 2001

711 Relay Service and Speech to Speech Relay Available in New York

711 toll free service is now available for deaf, hearing-impaired, and speech-impaired users of text telephones (TTY), as well as callers who want to communicate with them using standard telephones. Dialing 711 accesses the Telecommunications Relay Service Center from anywhere in New York State. The Relay operator then can connect you to your party anywhere in the country. Callers may also continue to use 1-800-421-1220 (Voice) or 1-800-662-1220 (TTY) to access Relay Service.

The Relay operator facilitates the conversation between the TTY user and the hearing person. Relay Service is free and available 24 hours a day, seven days a week.

It is important to note that for emergencies, the caller should go through 911. Calling 711 will only delay the process.

Speech-to-Speech Relay is available for individuals with speech disabilities who choose not to use a TTY and for people who are calling them. The toll free access number is 1-877-662-4234. An operator will answer saying: “NY Speech to Speech Relay. CA xxxx. Number please?”

Give the Communications Assistant (CA) the number you want to call. The CA will place the call and announce it to the far end. The CA will tell you the call is ready to begin. Talk directly to the person you are calling. The CA will repeat everything you say to the called party. At the point in your conversation where you want the called party to reply, say the words, “Go Ahead” or “GA.” This tells the called party it is their turn to talk. When you are finished with the call, say, “Goodbye” to the person you called and tell the CA you are finished or that you want to make another call.

TTY users who wish to call phone services that charge a fee for each call, such as 900 numbers, may now place those calls by calling the Relay operator at 1-900-230-6565. A TTY user will not incur a charge to call the Relay operator, but will incur any pay-per-call charges associated with the service.

Spanish speakers can use 1-877-662-4896 for text or voice.

When relay calls are made from coin telephones, no coins are required. All local calls are free and long distance calls can be charged to your Calling Card at the same rate as if you pad with coins.

To learn more about 711 Relay Service and features available to TTY users, call the Relay Inquiry Line, 1-800-664-6349 (Voice) or 1-800-835-5515 (TTY). There are other numbers for people who can talk but cannot hear or for people who can hear but who cannot speak.

Moving Right Along

Is the ADA Accommodating All?

The U.S. Commission on Civil Rights issued the final version of the report, “Sharing the Dream: Is the ADA Accommodating All?” on February 27, 2001. The report is available on their web site at: http://www.usccr.gov/pubs.htm

The report may be ordered free from:
U.S. Commission on Civil Rights
624 Ninth Street NW
Washington, DC 20425
Telephone: 1-202-376-8128
It takes 3-4 weeks to arrive.

Delta OK’s Wheelchair Settlement

WASHINGTON (AP) – Delta Air Lines was recently fined $25,000 for failing to store a customer’s wheelchair in the passenger compartment, as required by law, the Transportation Department said.

The airline also promised to avoid similar violations in the future, the department said.

The department said the airline will be permitted to use $10,000 of the civil penalty to purchase new hydraulic-lift boarding chairs.

Under department rules, collapsible wheelchairs are required to be stored in the passenger compartment if possible.

The case stems from a complaint filed by a passenger who boarded a Delta flight at New York’s LaGuardia Airport last March. The wheelchair was stowed in the cargo hold, where it was damaged, the passenger said.

Delta contended that the incident was a result of a misunderstanding of the passenger’s wishes. But the department acted after concluding that the carrier did violate the law and, while reviewing the case, learned of similar incidents involving wheelchair stowage on Delta flights.

ACTIVIST editor’s note: Carry-on luggage has been getting priority over folding wheelchairs in the cabin on many airlines. On a related topic, at the April 22nd DIA meeting, Anthony Trocchia suggested that we work to encourage airlines to buy the new, expensive wheelchair cases to protect motorized wheelchairs and scooters from becoming damaged while they are in the cargo hold. The website for a company who has the cases is http://www.haseltine.com. There is a downside to them. The cases do not fit on all commuter planes, and two people are needed to lift the chair into the case at curbside or on the tarmac. However, a few airlines are interested in purchasing the cases for some routes because they hope that using the cases would cut down on airline expenses to repair damaged wheelchairs.

Pedestrian Ramps (Curb Cuts)

Several members of DIA had a meeting with Irwin Lowenstein, Director of Sidewalk Management and Pedestrian Ramps (curb cuts) of the New York City Department of Transportation (DOT). He has replaced Meyer Fremder. The DOT is going to be focusing on putting curb cuts at every intersection, but it will take more than 5 years.

In the meantime, if you have complaints about or requests for pedestrian ramps, these are the numbers to call or fax. To request new pedestrian ramps, fax 1-212-487-5769 and call 1-212-487-5769. To complain about a new ramp that is poorly done, call the same number. It is best if you keep a copy or a note about your request, when you made it, what corners you complained about, and with whom you spoke.

There is a DOT rule that if a corner property owner redoes a sidewalk, a pedestrian ramp has to be added. Mr. Lowenstein also said that he is planning to redo pedestrian ramps that are diagonal to the sidewalk because they force people with disabilities to go outside of the crosswalk area and closer to traffic.

Editor’s Note: They also cause dangerous confusion because when they are covered with snow, we can’t tell where the ramp and the curb are because we don’t know what kind of a ramp is at each corner. In addition, people who have low or no vision can benefit from consistency.

Edwin Cooper Leaves Nursing Home and Continues Activism on the Outside

Edwin Cooper has left the Brooklyn nursing home, River Manor, where he lived for two years, and he is back in his own apartment. Congratulations, Mr. Cooper! Mr. Cooper, a member of DIA and JASA, was active in working for nursing home residents’ rights while he was in River Manor. During the time he lived there, Mr. Cooper was often ignored when he needed assistance and the employees cursed at him. Now, Mr. Cooper is enjoying his freedom and fighting for rights of people with disabilities and also for better postal service.

Listening to Activists

On February 24th, some DIA members were at Barnard College to attend an all-day conference entitled, “Models of Resistance: Conversations between Activists across Generations.” One of the activists who was there was Judith Heumann, who was until recently, Assistant Secy. Of Education for the Office of Special Education and Rehabilitative Services, and who founded Disabled in Action in the early seventies. Heumann mentioned an unmentionable in disability rights organizations: oppression in disability rights organizations themselves and the need to be inclusive. One speaker quoted another activist who said, “We are the ones we’ve been waiting for.” Yes! If we wait for other people to do the work, it isn’t going to happen. It also speaks to the concerns we sometimes have of not being up to the challenge, not knowing enough, not having enough time, but doing the best we can. Lastly, an activist said that we need to use “eloquent listening” to get from personal issues to seeing the larger political reality of issues. All in all, the day was a good chance to pause to reflect on what we are doing and how we are doing it.

Two Public Pay Toilets in Midtown

There are two public pay toilets in midtown and both are supposed to be accessible to people with disabilities. One structure is on Broadway and 32nd Street, and the other one is at Broadway and 35th Street. The 34th Street Partnership bought them for 350,000 dollars each. The charge for using them is twenty-five cents, but that might go up soon. Meanwhile, in 1997, according to a New York Times article by Barbara Stewart on January 18, 2001, the City Council had allocated five million dollars to build 100 pay toilets but that hasn’t yet happened.

Alice Crespo Sells Fuller Brush Products

Alice Crespo, a DIA member who heads Independent Recreation of the Disabled, is a Fuller Brush distributor. Purchase quality cleaning products or earn some money in your spare time selling Fuller Brush. For information call Alice at 1-718-261-3737

NYC Building Code is on the Web

The website is http://www.nyc.gov/buildings, and you must have a free program called Adobe Acrobat Reader 4.0 to read it.
TTY on Subway Stations – Updated Brochure

In January 2001, the MTA updated their brochure about TTYs in the subways. Call Customer Assistance at 1-718-330-3322 or 1-718-596-8273 (TTY) for a copy of the brochure.

Health Care Whistleblower Act Still Not Enacted

Although both houses of the New York State legislature passed the Health Care Whistleblower Act last year, Governor Pataki let the legislation die without signing it. Healthcare workers need to have this act in place before they will be comfortable to bring up wrongdoings in healthcare facilities or by healthcare providers to the authorities without worrying that they as whistleblowers will be fired or punished. Senate and Assembly leaders have pledged to continue to work for this legislation and are willing to work with the governor to see if they can agree on the details.

Medicaid Buy-In: Six-Week Senate Campaign Action Planned

Disability rights strategists have acknowledged that this will be a long State budget negotiation. The Assembly has passed an enhanced Work and Wellness Act. The Senate has introduced a “same as” bill. The bill has to pass the Social Services and Health Committees in the Senate before it gets negotiated in the budget. Therefore, we will have to obtain the support of Majority Leader Bruno, Senator Maier (Social Services), and Senator Hannon (Health) during the next six weeks. Our message will be clear: pass the enhanced Work and Wellness Act so that people with disabilities can have careers and can save for their retirement.

Dragon NaturallySpeaking Speech-Recognition Company in Financial Trouble

The future for the most popular speech-recognition software, Dragon NaturallySpeaking, is in jeopardy because the company who bought Dragon Systems last year, Lernout and Hauspie (L and H), filed for bankruptcy protection in Belgium (where L and H is based) and the U.S.. A U.S. bankruptcy court judge recently approved the sale of L and H’s speech recognition technologies to auto-parts maker Visteon Corp.

NaturallySpeaking is used by many people with disabilities because it is a hands-free voice system which works with other computer programs, and it is quite inexpensive, accurate, and easy to use once it is set up. It has enabled many people with disabilities to use the computer and to work. There are other speech-recognition programs, notably IBM’s Via Voice and others, but NaturallySpeaking costs less, has more features, and doesn’t take up as much disk space or slow the computer down as much as its competitors. It also has very good tech support.

A Thought by Porzia Danisi

I have proven to myself time and time again that the needs, strengths and talents of persons with disabilities can only be recognized by what we as individuals or as a group do rather than what we say. However, my heartfelt advice is to speak up and never give up, you just might be heard!

Accessible Taxis

by Robert Levine

The March 2001 New York ABLE article describes the New York City Council and the Mayor’s approval of $1,000,000 to introduce wheelchair accessible liveries and taxis to start later this year. How was this accomplished? What can the disability community do to make the program work and grow?

When I went to Boston in 1994 to visit a friend, I used accessible taxis for the first time. I thought if Boston can do it, why not New York City? Just at that time, two critical changes in our local taxi system occurred: the Taxi and Limousine Commission (TLC) allowed taxi owners to purchase minivans-that could be made accessible-and the city council was about to approve 400 new medallions (taxis) that would be added to the fleet. Would the new medallions be accessible?

Representing DIA, we (Frieda Zames and I) wrote to the TLC urging them to include wheelchair accessible taxis in the fleet. The answer we received was “use Access-A-Ride.” We wrote to the chair of the transportation committee, Noach Dear. He ignored us. We spoke at several public meetings and tried to get the Commissioner of the TLC, Christopher Lynn, involved, but to no avail. Then we decided we needed a lawyer, so we asked John Gresham of New York Lawyers for the Public Interest to help us. On March 19, 1996, Gresham prepared a detailed memo to Dear, with a copy to each council person, describing accessible taxis throughout the U.S. and other countries and stating that “If accessible taxis can make money in so many other places, surely they can make money in New York City.”

In early 1997 Marvin Wasserman, Chair of the 504 Democratic Club, called me to suggest creating a coalition to include as many disability organizations as possible and to obtain sponsors from city, state, and the federal government. He named the coalition the Taxis For All Campaign. He designed the stationery and encouraged Terry Moakley of Eastern Paralyzed Veterans Association (EPVA) to chair the meetings. Anthony Trocchia of DIA was chosen as vice-chair. And John Gresham became the lawyer for the coalition.

Throughout 1997 we held general meetings at Renwick Gardens every other month, and we developed a mailing list. Sponsored by Tom Duane, Resolution 2300a passes the city council on November 26, 1997. Besides designing a six month pilot project for accessible taxis and liveries, the resolution “calls upon the Mayor to pursue with vigor the exploration of options which would lead to …wheelchair accessible taxi and livery service in New York City, utilizing vehicles based upon universal design principles.”

However, little progress occurred from Resolution 2300a. During the next few years, six people-Moakley, Gresham, Wasserman, Trocchia, Zames, and myself-continued to meet among ourselves and with council members Tom Duane and later Gifford Miller. In addition, we met with taxi and livery owners, such as Stopplemann, Greenbaum and Kanter-Pero, spoke at hearings, and kept up to date with new standards for accessible taxis and liveries.

Perhaps most significant, the Taxis for All Campaign conducted a survey in 1999, a two-page questionnaire distributed by EPVA, DIA, the six New York City independent living centers, and many other organizations. Nearly 400 people filled out and returned the questionnaire, and 87 percent stated that they would use accessible taxis and liveries if available. Now we have a data-base of wheelchair users ready and eager to use accessible taxis and liveries.

Two players were crucial in bringing the accessible taxis and liveries to the city and both were in the March 2001 New York ABLE front-page photo, together with Terry Moakley and Peter Vallone. The first was Diane McGrath-McKechnie, who became Commissioner of the TLC in 1997. On the one hand, she seemed to want to include accessible taxis and liveries in the fleets, unlike former Commissioner Christopher Lynn. She eventually proposed accessible vehicle regulations for both fleets. On the other hand, she was disdainful of the Taxis For All Campaign, creating instead her own Disability Advisory Board that included three wheelchair users and a blind person-Terry Moakley, Carr Massi, Anita Apt, and Ellen Rubin. The Board rarely met even when McGrath-McKechnie met with industry representatives. So much of the work the coalition did was duplicated by the TLC. Although the disability community was pleased with the new vehicle rules, we realize that the bulk of the work has been left to the next administration.

The second player was Gifford Miller, who became our spokesperson at the city council when Tom Duane moved to Albany. It was Miller, of course, who got to know the intricacies of the policies and politics of accessible taxis during the first year. In 2000 Taxis For All members sent postcards to all our city council members. This was crucial in getting the council to approve the $1,000,000.

So what should Taxis For All be doing from this point on? Here are a few ideas:

Call an open meeting for all members of the Taxis For All Campaign.
Plan and design a strategy to encourage additional funds in future years.
Send the news that accessible taxis and liveries will be on the streets of New York City soon to as many people as possible, such as the Taxis For All mailing list and member disability organizations.
Determine who in the new administration will monitor this program and involve Taxis For All.
Contact all six of the candidates for Mayor and make them aware of our expectations. Giuliani and McGrath-McKechnie will be gone by the time accessible taxis and liveries are on the road. Some of the candidates have been heard from on the issue. Peter Vallone was on the cover of the March 2001 New York ABLE story. Mark Green should be reminded of the April 23, 1997 letter he wrote to McGrath-McKechnie, stating: “I look forward to working with you to create an integrated system of accessible taxis and liveries in New York City.” We must contact the other candidates too.

Ideas for Increasing the Disability Constituency’s Vote

by Frieda Zames

The disability community constitutes 20 percent of the population of the country, 54 million people. We are the largest, most diverse, and yet the least recognized civil rights minority. Although the vote presents many obstacles to people with disabilities, we in DIA recognize that gaining greater access to the vote is critical to obtaining greater political clout for the disability constituency.

In the early 1980s, less than one-third of the polling sites in New York City were wheelchair accessible (419 out of 1337). Absentee ballots were not good enough. We were not absent. Being less visible at the polls limited our influence on public officials, diluting our impact in the political 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. Continuing to ignore a 1980 amendment to the New York State Election Law requiring that all polling sites in the state have at least one accessible entrance, DIA accepted Koch’s challenge in 1984 and sued for polling access throughout the city. It took ten years before the lawsuit was finally settled although five sites still remained inaccessible. (Between 1984 and 1990, Koch employed many sneaky delaying tactics and pitted one minority group against another.)

In order to get more people to vote, the National Voter Registration Act (NVRA), also known as the “motor voter” law, became effective in the State on January 1, 1995 when the New York State Election law was amended to comply with the Federal act. But this law did not apply only to the Department of Motor Vehicles, it also applied to all state and city agencies including social service agencies.

Registration at social service agencies lagged behind registration at the DMV. This lag is especially a problem in New York City, which has the lowest percentage of drivers of any locality in the country. Furthermore, members of racial and ethnic minorities, poor people, women, and particularly people with disabilities, have the lowest percentage of drivers of any sociological group. As a result, the disability community fell behind the growth in voter registration. Again DIA sued — this time it was DIA vs. Giuliani as well as DIA vs. Pataki — and registration for people with disabilities improved. This lawsuit is still pending.

The Harris Poll indicated that 14 million Americans with disabilities voted in 2000, almost 3 million more than in 1996, representing an increase from 30 to 41 percent. We have come a long way but we still have miles to go — a lower percentage of the disability community voted than the 50 percent of the entire population. At least 20,000 polling sites around the country are not fully accessible. Furthermore, the majority of the nation continues to use antiquated voting machines that are especially problematic for disabled and older voters.

Now DIA is concerned with the voting machine. Many people with disabilities cannot vote in private even when polling sites are wheelchair accessible. As long as the technology exists and it does, why not purchase voting machines that allow the greatest number of people to vote independently? Most computerized voting machines permit people with all types of disabilities, such as blind people or people who are quadriplegic, to vote privately and independently. Such a ballot can be machine-checked for validity and then saved for a future recount, if needed.

At first I thought that we should strongly urge federal and state legislatures to require that every voting machine in the country or state now be changed to one that is accessible to the greatest number of people. But then I thought this idea may not be accepted nationwide or even in a particular state or locality. People might say, why should we purchase new voting machines if those we now have still work quite well. It’s too expensive. So, I thought of this compromise: when they have to replace worn-out voting machines or need new ones, require federal and state legislatures to only purchase voting machines that permit the greatest number of people to cast a private, independent and verifiable vote.

The disability constituency includes African Americans, Latinos, Asians, Caucasians, as well as all other groups. As obstacles are overcome and a greater percentage of voting age people with disabilities vote, the voting public will include an increased number of poor people and also will become more democratic.

The disability population is the largest minority in the country and growing, with families and friends. These numbers give us enormous potential clout. It is our responsibility to change this potentiality into real political power.

A Letter to the New York Daily News about Inaccessible Subways

Note: Most of this letter was reprinted in the April 6, 2001 New York Daily News. They did, however, leave out the horror story and they had asked for horror stories!

Dear Editor:

Re: Leaving out people with disabilities in the subway and your articles

It was with a combination of interest and dismay that I read your recent “Subway Squeeze” articles and Gene Russianoff’s (“More, More, More,” April 1, 2001) article on proposed solutions. As usual, people with disabilities were completely left out of the articles as we pretty much are left out of the subway system, too. Disabled in Action, a civil rights group, wants to see this unfair situation reversed.

Oh, we can hope that a station has a working elevator and we can attempt to get on the subway, but what holds us back is not the crowds: it’s the gap. A few brave wheelchair or scooter users try certain routes of the subway, but they have to depend on other riders to lift their wheels out of the gap and to pull them on or off the train when they get stuck.

Don’t blame us for the delays when we get stuck. It is our civil right to travel on public transportation like everyone else. It is up to the MTA to work on solutions which will enable us to ride the subways instead of using the slow, appointment-based, inefficient, and expensive-to-run Access-A-Ride paratransit system. Subways are usually the fastest means of travel around the city, especially from borough to borough.

The elevators are another story. There is an elevator hotline, but it isn’t kept up to date. The elevators are smelly and unkempt, and there aren’t enough of them. One of our members was stranded underground by non-working elevators and wrong information from station personnel. She had to wait hours to be carried out of the subway station by a platoon of policemen. There is no evacuation plan to rescue us when we are stranded underground.

We matter! We challenge you to include people with disabilities in your articles on public transit, and we challenge the Straphangers and the MTA to come up with workable solutions for us to use the subways, too.

Sincerely,
Jean Meyers Ryan, Disabled in Action board member

CC: Pete Donohue of New York Daily News, Gene Russianoff of Straphangers

A Different Approach

by Porzia Danisi

In the past, all issues dealing with disability and rehabilitation were viewed solely from the scientific or medical perspective and it was assumed that the use of drugs or other medical treatments was the only way to handle them. The benefits of holistic medicine are finally being recognized and the American health system is taking a more comprehensive therapeutic approach. Yoga is an especially good example of this. It originated in India but is becoming quite popular in the Western hemisphere.

Through the use of movement, Yoga enriches the mind and helps the body reach a relaxed state and sense of wellness. Yoga employs a gentle approach. Contrary to popular belief which holds that yoga is just a bunch of mindless exercises and that you can’t gain muscle strength through Yoga, its wide array of exercises calls for focus, mindfulness, strength, and stamina. It helps strengthen the chest, back stomach, arm, and leg muscles, and it improves flexibility, coordination, and overall fitness. It also boosts the immune system and relaxes body and mind.

When approached with an open attitude, Yoga can help you discover your body’s hidden potential, make you feel comfortable with your body, improve your self-image and self-esteem, and enhance your power of concentration and memory. It can give you a new outlook on life, empower you to approach all life situations with more clarity and serenity, instill a sense of fulfillment and confidence, help build your willpower and put you in charge of your own life.

To many readers this may sound too good to be true, but I can assure you that even though such results may not be achieved in all cases, some kind of physical improvement is guaranteed to happen in all cases. I sound confident about it because it happened to me.

At the age of 14, I was diagnosed with Friedriech’s Ataxia, a slowly progressive neuromuscular disorder, and I have been obliged to use a wheelchair for over 20 years. I stopped going to college in 1977 as medical problems were mounting, making it very difficult for me to ambulate outside my home. However, I returned to college once I got a wheelchair and got a bit comfortable with the new me.

After graduating from Brooklyn College with a Bachelor of Science in Business, I felt more confident to tackle the world and developed a strong interest in physical fitness which I’ve pursued most fervently ever since. In the hope of maintaining the existing level of function, I started physical and speech therapy before year-end and later continued doing breathing exercises independently. I started massage therapy and joined a health spa the following year. In January, 1991, I started volunteering in the Database Department at the Covenant House Nineline in Manhattan, and from 1990 to 1992 I participated in a dance therapy class at the International Center for the Disabled. In 1993, I joined a formal prayer group at Our Lady of Grace Church in Brooklyn and in 1994 I was appointed Parish Advocate of Persons with Disabilities there. I went on a pilgrimage to Lourdes in June 1995 and took some classes in the Feldenkreis Method later in the year.

Almost three years ago I started an aggressive physical therapy program which precipitated some remarkable improvements in my physical condition. Hope, enthusiasm, and aspirations for the future led me to enroll in a hippotherapy (horseback riding) program in 1997, and most recently to join the Initiative for Women with Disabilities program at the Hospital for Joint Diseases where each person participates in physical therapy which included one-to-one Yoga and a T’ai Chi class.

Since I started the program about 12 weeks ago, I’ve seen great improvements in both my physical condition and my emotional state. I feel lighter and more flexible, I can move with more ease, and I am straighter and taller. I have actually gotten two inches taller. My trunk control has improved, I sit straighter in my wheelchair, and I am able to assume a standing position with less assistance. Whereas I could stand in a stander for an hour before I started the program, I can now easily stand up for two hours. I feel more confident, more hopeful about the future, and in better control of my body and my life.

At this point, I am asking myself where all this is leading. All I know is that I must simply wait. In the meantime, I keep hoping, try to maintain a positive attitude, hold on to my faith, keep praying and of course keep doing my work!

Book Talk: The Disability Rights Movement: From Charity to Confrontation

by Nancy Rolnick

What we affectionately call Frieda’s book is actually The Disability Rights Movement: From Charity to Confrontation by Doris Zames Fleischer and Frieda Zames (Temple University Press, 2001, ISBN 1-56639-812-6). This book is a primer of the history of disability rights with a scholarly approach, and an absolute must for everyone interested in the movement. It is the most thorough book we have on the subject. While No Pity author, Joseph P. Shapiro dealt primarily with the West coast movement, this book covers coast to coast.

A particularly thorough table of contents leads readers to the sections which are of most interest to them. One of the chapters that I found most interesting was “FDR, the Cured Cripple,” because I lived through FDR’s four terms. My memory of the man was that he was always disabled after he contracted polio, and I was well aware of his disability. Perhaps my memory is colored by my own acquired disability.

Another topic that caught my attention was the “Not Dead Yet” and “Physician Assisted Suicide” sections. Along with the rest of the world, I have to face the emotional fact of my own death and it is scary. I am particularly scared because I fear that I will be discriminated against because of my disability; this, I suppose, is a universal feeling – at least among us.

Finally, “The Struggle for Change” chapter is very well-documented in the Disabled in Action section.

After a period of distress at considering myself a member of such a disparate group of crazy, strangely-formed characters, I came to love people with disabilities because they are my brothers and sisters. Ironic, as I never had siblings. I see disabled people as wanting to change the world, and succeeding.

I want to change the world, too. This book is an indispensable guide to doing so.

Travel News

by Jean Ryan

Accessible Travelers’ Database

On the Web, there is handy site called The Accessible Travelers’ Database run by Project Action of Easter Seals. It has information about accessible travel, such as how to contact Paratransit in another city or how to get an accessible ride from the airport. The site’s address is http://www.projectaction.org/paweb/index.htm. The data for NYC is out of date, but we’re working on getting it updated.

Greyhound ADA Hotline: 1-800-752-4841 or 1-800-345-3109 (TDD)

Greyhound, as a result of a settlement with the Department of Justice, is making its fleet accessible, but you must give them at least 48 hours’ notice. Between now and October 1, 2001, Greyhound will guarantee lift-equipped bus service from and to all of its locations except in “excusable circumstances.” [editor’s note: It seems like there are too many of those circumstances.] If you notify them ahead of time but it is less than 48 hours, they still have to try to accommodate you. After October, they must provide lift-equipped bus service on 48 hours’ notice at every location that they serve. According to the settlement, Greyhound has until October 28, 2012, to have its whole fleet lift-equipped. They were given such a long time because buses last a long time, and it was too expensive to replace the whole fleet at once.

If you have a complaint about Greyhound, you can complain within 60 days of the incident to:
Greyhound ADA Corporate Office
P.O. Box 660362
Dallas, TX 75266-0362.

You can also file a complaint with the:
U.S. Department of Justice, Disability Rights Section – Civil Rights Division
P.O. Box 66738
Washington, DC 20035-6738.

If any of you ride Greyhound this spring or in the summer, please write the ACTIVIST and tell us of your experiences.

Wheelchair Accessible Bus Service to JFK and LaGuardia Airports

The MTA has put out a new brochure detailing MTA and private bus lines that go to JFK or LaGuardia airports. The 4 New York City Transit bus lines are all wheelchair accessible so one does not need to call in advance, but the other lines require 24 to 48 hours notice. Call Bus Customer Relations at 1-888-692-8287 (Voice) or 1-718-596-8273 (TTY) for the brochure.

Train Safety Questions Following Amtrak Accident Near Syracuse

SYRACUSE, N.Y. (February 23, 2001) AP — Negligence by an Amtrak engineer who misread a railroad signal led to a collision with a slow-moving freight train that left 61 people injured, lawyers allege in a multimillion-dollar class-action lawsuit.

The lawsuit also contends that Amtrak failed to provide proper safety equipment for the numerous disabled passengers on Train 286 and violated the American with Disabilities Act.

“At this point it appears we have a driver who didn’t pay attention to a brake warning. We have possibly a problem with CSX not having proper equipment and warning systems on the back of their (freight) train,” said Peter Catalano, one of the attorneys handling the lawsuit.

“Most importantly, this particular train had many people with disabilities on it. These people were not restrained in any way. No safety equipment at all was provided to them, which caused them to fly many feet …and sustain very serious injury,” Catalano said Thursday during a news conference.

“If you go on an airplane, there are seat belts. Cars are required to have seat belts. Here we have a passenger train where there are no seat belts available to anybody. It made for a very horrific and horrible crash,” he said.

The crash happened just moments after the five-car passenger train left the Regional Transportation Center in Syracuse. The train was traveling from Buffalo to Albany with 98 passengers and a crew of four. Although no one died, many passengers suffered broken arms, legs and head injuries.

Officials at Amtrak and CSX refused to comment on the lawsuit.

The lawsuit seeks $75,000 per passenger from the two railroads, which is the minimum amount plaintiffs must ask for in a class-action in federal court, Catalano said. If all those injured received that amount, the lawsuit would total nearly $4.6 million. However, Catalano noted, individual awards would vary depending on the seriousness of injury.

Fairport’s Ben Penner, 56, one of seven disabled passengers injured in the wreck and a plaintiff in the lawsuit, said he also hopes the legal action results in legislation requiring passenger trains to provide safety equipment, especially for the disabled.

“There was no place to anchor equipment. There was no place to hang on during the ride. There were no safety restraints. You were on your own,” said Penner, who uses a motorized scooter.

Penner, who had his left arm in a sling, said he also suffered a concussion and a shoulder injury when he was tossed about inside the train, along with other riders, wheelchairs and luggage. He said his head left a dent in a side wall.

“A little faster, the right shrapnel, and I probably wouldn’t be here today to address these issues,” said Penner.

Penner and six others from the Rochester area were traveling to Albany to meet with state lawmakers regarding disability issues.

“If they are going to provide amenities to people with disabilities, it has to be more than a decal on the side of a car. Someone should be thinking about chairs, people and equipment,” he said.

Sherry Lampert 1947-2001

Some of you may remember Sherry Lampert’s insightful and humorous articles in THE ACTIVIST through the years. Sherry lost her valiant fight against breast cancer on March 23, 2001. Her friends and colleagues remembered her with a memorial service on April 14th. Phil gave this eulogy that captured Sherry’s spirit and the ways we knew her.

For Sherry
by Philip Bennett

I don’t remember the first day I met Sherry Lampert. It was probably at one of my first DIA meetings, many years ago. My first words to her were probably, “Do you need any help?” And I’m sure, if she did need help, she told me politely and in no uncertain terms and made sure I understood every word she said. That’s the way she was.

Some who barely knew Sherry, who only saw the chair and twisted hands and face, who struggled to make out her garbled speech, and who assumed that she could not possibly have a life worth living, will be surprised to hear that Sherry was one of our greatest and toughest fighters and most loving friend. She may never have had a job or a family of her own (outside of us), she may never have mounted a podium to make a speech or physically helped with a mailing, but her commitment to the Cause was no less grueling than any of ours.

Her favorite activity was demonstrations. And she attended just about everyone we had, even if it meant getting up at 3 in the morning, staying from dawn to dusk in Washington D.C. and finally returning home past midnight. I remember she was there with us, as enthusiastic, committed as ever and risking arrest, just a few days after learning she had cancer.

She had opinions and was not shy about expressing them. And we all knew where she was coming from when she spoke, even when we disagreed with her. We had to make damn sure we knew what we were talking about when we responded to her comments. Anyone who spent any time with her knew this woman was no mental lightweight.

After her mastectomy she was determined to get past it and move on, and even used the experience to highlight the attitudinal shortcomings of some medical professionals. And, of course, there were the jokes. She announced that her mastectomy was “a real bust,” chemo was “all in vein,” and the radiation was “a blast.”

And when she was told several months later that the cancer had spread and death became a real possibility, she refused to let that get her down either, insisting that, at her service we had to tell her jokes and she wanted to be buried in her “Not Dead Yet” tee-shirt. Too soon the cancer ate through her body and the morphine took much of her spirit. She spent the last two days of her life raging against the dying of the light. My deepest personal regret is that I was not there with her when her valiant heart finally came to rest, but I’m grateful that I was able to hug her one last time and say goodbye the day before the end came. Regrettably, she did not get her wish. I don’t know what she wore when she was buried. All I know is that this beautiful woman, though born into the Jewish faith and rejecting organized religion, died with a huge wooden cross and figure of Christ mounted on the wall near her bed, that she had no service at all and, at her burial, had to suffer the final indignity of a Rabbi proclaiming to one and all that Sherry’s life was empty and filled with pain and sadness.

I’d like to think that Sherry is with us right here and now, and that she’s as pissed off as ever. Yes, Sherry, we will never ever forget you as we struggle to fill the cavernous hole your passing has left in our hearts and in the Cause. We will attempt to be worthy of your memory and your pursuit of justice as a united people and, as individuals, to live at least half as full a life as yours. Much like Dr. King before you, you didn’t leave a huge estate behind, or a lot of money or titles greater than DIA Board member behind, but you left a committed life behind. And those of us who still walk and talk and use our hands in a so-called “normal” way must spend the remainder of our lives trying to be as rehabilitated as you.

Goodbye, sister. And keep givin’ ’em hell.

Rae Unzicker

In March, the international community of people committed to the empowerment, dignity, freedom, independence, rights, capacity and humanity of people considered to have a psychiatric disability lost one of our greatest leaders. Rae Unzicker was the founder of the National Association for Rights Protection Advocacy (NARPA) and, most recently, brought us to the national policy table with her pioneering role on the National Council for Disability.

More important, she was mother, inspirer and model for thousands of advocates all across the nation working to promote the rights and needs of people with psychiatric disabilities.“To Be A Mental Patient”
by Rae Unzicker

To be a mental patient is to be stigmatized, ostracized, socialized, patronized, psychiatrized.

To be a mental patient is to have everyone controlling your life but you. You’re watched by your shrink, your social worker, your friends, your family. And then you’re diagnosed as paranoid.

To be a mental patient is to live with the constant threat and possibility of being locked up at any time, for almost any reason.

To be a mental patient is to live on $82 a month in food stamps, which won’t let you buy Kleenex to dry your tears. And to watch your shrink come back to his office from lunch, driving a Mercedes Benz.

To be a mental patient is to take drugs that dull your mind, deaden your senses, make you jitter and drool and then you take more drugs to lessen the “side effects.”

To be a mental patient is to apply for jobs and lie about the last few months or years, because you’ve been in the hospital, and then you don’t get the job anyway because you’re a mental patient. To be a mental patient is not to matter.

To be a mental patient is never to be taken seriously.

To be a mental patient is to be a resident of a ghetto, surrounded by other mental patients who are as scared and hungry and bored and broke as you are.

To be a mental patient is to watch TV and see how violent and dangerous and dumb and incompetent and crazy you are.

To be a mental patient is to a statistic.

To be a mental patient is to wear a label, and that label never goes away, a label that says little about what you are and even less about who you are.

To be a mental patient is to never to say what you mean, but to sound like you mean what you say.

To be a mental patient is to tell your psychiatrist he’s helping you, even if he is not.

To be a mental patient is to act glad when you’re sad and calm when you’re mad, and to always be “appropriate.”

To be a mental patient is to participate in stupid groups that call themselves therapy. Music isn’t music, its therapy; volleyball isn’t sport, it’s therapy; sewing is therapy; washing dishes is therapy. Even the air you breathe is therapy and that’s called “the milieu.”

To be a mental patient is not to die, even if you want to — and not cry, and not hurt, and not be scared, and not be angry, and not be vulnerable, and not to laugh to loud — because, if you do, you only prove that you are a mental patient even if you are not.

And so you become a no-thing, in a no-world, and you are not.

Victory in Federal Paratransit Case

A dispatch by Steve Gold from Philadelphia, January 8, 2001

‘MAY NOT RELY ON ITS OWN INADEQUACIES’

Transportation authorities throughout the country have known that they were supposed to comply with the DOT’s “next day” requirement, but have blatantly violated it.

Now, a United States District Court has issued the first decision in the country under the ADA and Section 504 on the “next day” issue. The court upheld the U.S. Department of Transportation’s regulation that a public transportation entity “shall schedule and provide paratransit service to any ADA paratransit-eligible person at any requested time on a particular day in response to a request for service made the previous day.”

The Court stated that DOT expected public transportation “to attempt to provide properly requested rides to all ADA-eligible riders, without exception.” That means 100 percent of people with disabilities are entitled to paratransit rides the next day just as 100 percent of nondisabled persons receive fixed route service.

In rejecting the transportation authority’s defense, the court said that “the focus is not on the percentage of paratransit rides provided to the disabled but rather the number of rides that the transportation authority fails to provide to these patrons and the reasons for that failure.” Further, “while the transit authority provides rides for many patrons in compliance with the law, it may not rely on its own inadequacies to justify its noncompliance for all.”

One of the two plaintiffs, Liberty Resources (the CIL of Philadelphia) had standing in the suits, the Court held, because it was injured by the authority’s nonperformance. Liberty employees spent time meeting with the transportation authority, participating in protests, and staffers were also unable to schedule rides to visit clients. Volunteers to the center had also been unable to schedule rides. The Court found that Liberty Resources provided “an undisputed record that shows a concrete and particularized injury, specifically, expending their own time and resources in a range of ways.”

[Mouth Magazine Note: Gold was attorney in the case. He adds that “The decision and the requirement for next-day service is a great organizing handle.” He also saluted the U.S. Department of Justice for filing an extremely helpful and persuasive amicus brief. The decision is on the Internet at http://www.paed.uscourts.gov/.]
From March-April 2001 Mouth Magazine, page 7

ACTIVIST editor’s note: Access-A-Ride in NYC should also focus on its mistakes to try to rectify them instead of saying how many rides they provide. Our people are still being stranded by AAR and not getting rides for the next day. Steve Gold was also one of the attorneys on the lawsuit against Access-A-Ride in which DIA participated.

BREAKING NEWS: On April 20, 2001, Paratransit in Philadelphia struck back by saying that it will try to eliminate ten percent of the 6,000 people who take paratransit by requiring that every rider go to a hospital to be tested on ability to travel to and from a bus stop, use a wheelchair lift, and understand how to read schedules and transfer from one route to another. They will look at individual’s pattern of travel. But Gold said that transit agencies are not allowed to restrict people with disabilities to certain transit routes. By allowing fewer people to ride paratransit, the agency is hoping it will save money. Hopefully this unfair idea will be stopped in its tracks.

Florida Adopts ADA Notification Flyer for Businesses

On February 12, 2001, Florida Secretary of State, Katherine Harris, held a press conference to launch the Florida’s ADA Notification Flyer. She collaborated with disability advocates to create this document which is now being attached to every application for a Florida occupational business license and to all license renewals. It is also included in all incorporation document applications. The object of the initiative is to provide notice to businesses that they may have an obligation to remove obstacles to accessibility if they deal with the public and qualify under Title III, public accommodation provisions of the Americans With Disabilities Act (ADA).

Harris is promoting this initiative to all secretaries of state in the other forty-nine states. Advocates are urging people to contact the secretaries of state in their state. Disability advocates also hope to convince Representative Mark Foley (R-FL) that there would be no need for his Americans With Disabilities Notification Act if every state followed Florida’s example.

ACTIVIST editor’s note: If we could do something like this in New York State, hopefully we would have more accessible places and less work to do in forcing businesses to become accessible.

From Disability News Service; Monday, March 12, 2001
Read about it at http://www.adaaccessnow.org/
See a copy of the Notification Flyer at: http://www.disabilitynews.com/flada.htm

Finally!!
The Nation’s Largest Nonprofit H.M.O.Agrees to Become Accessible

The nation’s largest nonprofit H.M.O.agreed in April 2001 to revamp all its California health centers and policies to ensure that people with disabilities have access to the full range of health care.

The agreement will settle a class-action lawsuit, the first of its kind in the nation, that was filed last year against the health maintenance organization, Kaiser Permanente, on behalf of all its California members with disabilities. The lawsuit argued that Kaiser discriminated against disabled patients by giving them inferior medical care.

Part of the problem, the lawsuit said, is inaccessible medical equipment, like examination tables that do not lower and scales and mammography machines that cannot be used by people in wheelchairs.

“My first reaction was, `Oh, my God, we have a lawsuit,'” said Richard Pettingill, president of Kaiser’s California division, “but it only took about five minutes before it was apparent to me that we needed to step up and provide some leadership.”

The settlement Kaiser agreed to is far-reaching, covering not only the installation of accessible medical equipment and the removal of architectural barriers, but also a broad commitment to develop training programs, handbooks and a complaint system to meet the needs of the disabled. Kaiser also agreed to consider developing specialized clinical programs in disability care and to review all its policies to ensure that they meet the needs of people with vision, hearing, cognitive, speech and mobility disabilities.

“We believe this will be revolutionary in terms of its impact on health care for people with disabilities,” said Sid Wolinsky, litigation director of Disability Rights Advocates, the Oakland group that brought the lawsuit. “The agreement with Kaiser provides a comprehensive blueprint that could be used by any health provider anywhere in the country. We intend to use this as a template to present to other major health-care providers, to urge that they, too, adopt this approach.”

Editor’s Note: We need accessible medical care in New York City, too. Let’s work towards getting it.

Justin Dart on Bush Tax Cut

Today, March 1st, 2001, People For the American Way and a coalition of more than 500 organizations held a Washington Press Conference to protest the tax cut proposed by President Bush.

Justin Dart spoke representing the disability community. Andy Imparato, president of AAPD (American Association of People with Disabilities), was also present. Dart’s remarks follow.

“I know that the great majority of 54 million Americans with disabilities join me in congratulating President Bush on his pledge to build ‘a single nation of justice and opportunity’ and his New Freedom Initiative for the disability community.

But conscience demands that most of us oppose the President’s tax cut proposal that would benefit principally the well-to-do at the expense of programs like Medicaid, Medicare and Social Security and the elimination of deficits and debt.

In the midst of world record prosperity, millions of Americans still lack adequate food, housing, education and health care. Millions face old age with no guarantees of security.

Millions of people with disabilities are still unemployed. Millions are segregated from the mainstream in institutions, nursing homes and back rooms. People with disabilities are still the poorest of the poor.

Americans, let us transcend partisan arguments, and unite in that which we all agree – reverence for individual human life. Instead of cutting taxes for the fortunate few, let us invest in the empowerment of all to live their God given potential. Rich and poor will profit, economically, and in quality of life.

Mr. President, lead us indeed to ‘a nation of justice and opportunity’ for all.”

During the question and answer period, one reporter asked the panel members if they would refuse to accept the Bush tax cut on their personal tax returns — returning the money to the government. Justin Dart answered, “I would receive a substantial tax cut under the Bush plan. I would not return the money to a government that is attempting to repeal Abraham Lincoln democracy. I would donate all of it to the People for the American Way, the Leadership Conference on Civil Rights and the American Association of People with Disabilities.

That is a promise.”

(from the Justice for All website: http://www.jfanow.org/)

The FDR Memorial: Who Speaks From the Wheelchair?

by Rosemarie Garland-Thomson

As public spaces transformed into collective stories, memorials are inherently controversial. Didactic narratives about who we are and what we believe, they span generations and vast differences in human perceptions, bringing to light all sorts of divisions in the national “we.”

One of those divides has occurred between a group of scholars in disability studies and the designers of the Franklin Delano Roosevelt Memorial in Washington. The five-year struggle over the collective story told by the F.D.R. memorial ended only this month [January, 2001], when President Clinton dedicated an addition to the memorial. The controversy — and, unfortunately, its not entirely satisfactory conclusion — tells us much about disability in American culture, about disability studies, and about ourselves.

Even before its dedication, on May 2, 1997, the memorial had splintered the national “we.” The original monument consisted of four granite-walled outdoor “rooms,” which narrated F.D.R.’s presidency with inscriptions of his own words and with nine bronze bas-reliefs and statues, representing scenes of his presidency, all intermingled with pools, waterfalls, and greenery.

The segment of the American “we” representing disability-rights activists and scholars in disability studies had wanted to avoid repeating the persistent stereotypes of disability — the ones that tell us that disability is a shameful personal problem relegated to the private realm of charity and medicine, but inappropriate in the public sphere.

We had wanted the memorial to tell the story of a man who was both disabled by polio and president of the United States for 12 years; to claim F.D.R. as a disabled public figure who represented not just the 15 percent of the U.S. population who have disabilities, but everyone, since we will all become disabled if we live long enough. The memorial’s present and future audiences, we had argued, would consist of people whose consciousness had been transformed by civil-rights movements that included the disability-rights movement, and by legislation like the Americans With Disabilities Act, the landmark law that mandates full integration of people with disabilities into American society.

But the only statue that even remotely referred to F.D.R.’s disability showed him seated, covered by a cape, on a chair with small wheels barely peeking out. The threat of protests by disability activists at the memorial’s dedication convinced President Clinton to seek an addition, and the designers agreed — the first time that an existing national memorial was to be changed. Maya Lin’s controversial Vietnam Veterans Memorial was augmented with representational figures of soldiers, but those traditionally heroic statues only flank, rather than fundamentally change, the somber black-granite slab and the space of meditation and mourning it creates.

The bold mandate to reimagine F.D.R. as at once heroic and disabled has now been realized. A new “room” at the entrance to the present memorial contains a simple, life-size bronze statue depicting Roosevelt seated in his wheelchair, wearing his trademark rumpled suit, pince-nez, and fedora. It differs from the regal, robed, larger-than-life figure represented in the third room, where the ample cloak erases and denies the mark of his disability. The new statue witnesses the simple humanity of the great leader and registers it as the universality of disability. It also marks today’s historical moment, when disability defined as a civil-rights issue is superseding disability as a medical or charitable issue.

Yet the controversy continues, because the story that the new “room” of the F.D.R. memorial tells is still fraught with contradiction. At issue is the phrasing of the words inscribed on the granite wall behind the new statue of F.D.R. A group of us from the field of disability studies had been invited to recommend potential quotations, from which the designers were to choose an inscription. As historians and literary critics who traffic in words, we relished the chance to influence the way that people present and future would understand disability. The memorial’s other inscriptions are illustrious words that enrich the story told by the spaces and the statues. F.D.R.’s eloquent verbal commitments to equality are literally set in stone, shaping the story of his presidency and of the nation itself. One powerful quotation reads, “We must scrupulously guard the civil rights and civil liberties of all citizens, whatever their background. We must remember that any oppression, any injustice, any hatred, is a wedge designed to attack our civilization.” We wanted the new addition to continue the theme of equal rights that is the hallmark of both the disability-rights movement and the F.D.R. memorial.

We had a story about disability that we wanted the new room to tell. We sought to offer a quotation as crisp, powerful, and unambiguous as the bold “I hate war” chiseled into the wall above the tumbled stones that suggest the blasted buildings of World War II while creating a majestic waterfall that implies transcendence.

F.D.R.’s strategy in the Depression had been to alter the environment to meet the needs of the people. That was parallel, we reasoned, to the idea that people with disabilities need a material situation that accommodates the differences of their bodies or minds. So we looked for a quotation to convey the idea that political equality and access to the workplace for people with disabilities requires a leveling of the playing field — both literally, in the case of wheelchair users like F.D.R., and metaphorically, for those of us who need other accommodations to be fully integrated into the public sphere.

We also wanted to tell the story of a determined man who used a wheelchair, and whose use of it influenced the world around him. As scholars in disability studies, we examine disability as a cultural concept that shapes history, belief, art, literature, and other aspects of culture. We saw F.D.R. as someone whose disability shaped him and who, in turn, shaped his own world and the world that has come after. We looked for a quotation telling that story about disability while eschewing stereotypical stories about courageous people who overcame their disabilities or found serenity through suffering.

Enough of those oppressive narratives dominate public thought and circulate in telethons, fiction, and sentimental tracts. The F.D.R. memorial should offer up an accomplished leader, not a cheerful or chastened cripple.

To provide criteria for selecting the inscription in the new room, we suggested three themes that should be emphasized, and three that should be avoided. We sought a quotation, first of all, that would advance the idea that disability is integral to a person’s character and life experience, rather than a defect to be eliminated. Second, we wanted a quotation suggesting that the experience of disability can enrich a life, foster leadership, and create a sense of community. Third, in keeping with the human scale of the statue, we searched for words hinting that F.D.R.’s disability made him an accessible — rather than a lofty — hero. In other words, we recommended that any new inscription present disability as a common, yet influential, human experience, one that can be integrated into a meaningful and full life.

Conversely, we argued that the quotation should avoid the stereotypical narrative that disability is a tragic experience to be overcome. Discrimination, more than impairment, is what people with disabilities have to surmount. Our second caveat was more complex: In keeping with our conviction that disability should be viewed as a political issue of rights and access, we intended to circumvent the idea that disability is simply a matter of having an individual impairment to contend with. Recasting social attitudes and removing environmental barriers are more important for improving the lives of people with disabilities than are their own spunk, saintliness, iron will, or the generosity of others.

Third — the most subtle point to convey — we strove to dispel the pervasive attitude that disabled people warrant attention only to provide lessons or inspirations to others. We wanted to focus on how F.D.R. himself experienced disability, rather than turn him into a homily for the nondisabled that inspires pity and admiration — or gratitude that they are not themselves disabled.

Gracing the humble but commanding statue of a disabled F.D.R. with a quotation that could do all of that political and cultural work was challenging. After reviewing more than 100 possibilities, consulting with other scholars and disability activists, and, at times, disagreeing among ourselves, we offered a unanimous recommendation to the designers, trusting that they would understand and support our criteria: “We know that equality of individual ability has never existed and never will, but we do insist that equality of opportunity still must be sought.” Combined with the image of a U.S. president using a wheelchair, those words sent the unequivocal message that disability is an issue of equal opportunity.

To our dismay, however, the designers and the other people advising them selected an inscription for the new room of the F.D.R. memorial that has exactly the effect we’d hoped to avoid. Disregarding our recommendation, they instead used a quotation from Eleanor Roosevelt: “Franklin’s illness gave him strength and courage he had not had before. He had to think out the fundamentals of living and learn the greatest of all lessons — infinite patience and never-ending persistence.” That quotation is compelling, and it even fulfills some of our criteria, because it interprets F.D.R.’s disability as a positive influence on his life. Indeed, we had offered it along with several others as a possible addition that might augment our recommended choice. But we did not want it to be the only story of disability that the memorial would tell.

Alone, Eleanor Roosevelt’s words undermine disability-rights goals. To begin with, we believe that F.D.R. should speak for himself. Too often, others have spoken for and about people with disabilities. In the old way of understanding disability people with disabilities were silenced while the authority to define them and to narrate their experience was appropriated by medical experts, service providers, or family members. Having another person speak for F.D.R. repeats the humiliating experience of being ignored that people with disabilities often endure. A quotation from his wife also reinforces the myth that F.D.R. denied his disability — especially since nowhere else in the memorial do quotations from anyone but him appear.

Even more important, to have the first two words a visitor encounters at the memorial be “Franklin’s illness” presents disability in a way that doubly violates the spirit of equality. “Illness” is a synonym for impairment, a term that disability scholars and activists use to denote functional limitation. “Disability,” on the other hand, is a term we use to describe the system of representation that produces discriminatory attitudes and barriers to full integration. In essence, “impairment” and “illness” are about bodily differences, whereas “disability” is about the social and political context in which our bodies operate. The distinction is much the same as the one that scholars often draw between “sex” and “gender.” “Illness” locates the story of disability in hospitals and rehabilitation centers. We want the story of disability to be placed in independent-living centers. To object to “illness” is not to fault Eleanor Roosevelt for being politically incorrect; rather, it is to suggest that the way we view disability in 2001 and beyond has changed from the way it was imagined in 1949. After all, a memorial should not simply replicate the past, but use history to create a future vision.

“Franklin’s illness” also personalizes rather than politicizes disability. While the quotation the designers propose is certainly moving, it tells the stereotypical, apolitical story of disability as an individual catastrophe, psychological adjustment, and moral chastening. Impairment is a private problem that an individual must overcome, not a public problem of environmental and attitudinal barriers that can be removed through legislation, policy, and education. Moreover, opening with this quotation places the F.D.R. memorial in the genre of public works intended for collective grieving — like war memorials, the AIDS Memorial Quilt, the Oklahoma City National Memorial, or plaques for sailors lost at sea.

In our debate with the designers, they asserted that their quotation would make F.D.R. “very personal, very accessible.” But they confused their intent to humanize F.D.R. with personalizing his disability. The inscription that now flanks the statue encourages visitors to respond with sympathy, admiration, and charity rather than with support for equal access and integration. A more effective way to humanize F.D.R. would be to suggest that his impairment reinforced his commitment to the universal mandate for “equality of opportunity,” a point to which our recommended quotation alludes.

The designers also mistakenly justified the choice of their text on aesthetic grounds. The story of “Franklin’s illness” as well as of his “strength,” “courage,” “patience,” and “persistence” would create an aesthetically differentiated and inspirational space, they argued in commenting on our recommendation. The new room was to be a “prologue.” In reality, that suggests separating the personal story of disability from the political content of the memorial’s other rooms. The quotation clings to the stubborn stereotypes of disability that still feel comfortable to many Americans, simply because those ideas are so easily recognizable. A wheelchair-using F.D.R., spoken about by others, is segregated within his own memorial. That denies the political work of disability-rights activists and scholars, who have sought to eliminate precisely such segregation.

Many of us in disability studies wish to register our dissent from the choice of the inscription for the new room of the F.D.R. memorial. Pleased as we are with the statue itself, we worry that this memorial to our first markedly disabled president ultimately replicates the segregation and privatization of disability. The inscription undermines the work of disability-rights advocates who worked so hard to make the new room a reality. It tells the story that disability is separate from politics — a personal problem rather than a public political struggle.

In the year 2001, we are on the cultural cusp of a new way to understand disability. The memorial’s figures, spaces, and, particularly, its words implicitly instruct visitors in how they should imagine disability. In the controversy over the F.D.R. memorial, our evolving national narrative of disability was played out as a quarrel between aesthetics and politics. But underneath, the disagreement was a struggle between familiar old stories and bold new ones, between moving stories about personal suffering and empowering ones about social equality. While the designers of the F.D.R. memorial have laudably affirmed disability with the depiction of the president using a wheelchair, they did not succeed in rewriting the story of disability in terms that will resonate for future generations.

The addition to the F.D.R. memorial suggests two conflicting stories: yesterday’s story of disability as a personal failing overcome by individual effort, and today’s and tomorrow’s story of disability as an issue of civil rights, integration, and diversity. Our national disability politics has come a long way since the 1930’s. Shouldn’t our national aesthetics now take up the challenge to transform the meaning of disability?

Rosemarie Garland-Thomson is a professor at Howard University. This article, which ran in the Chronicle of Higher Education, is reprinted here with her permission.