|Photo by Rolando Alvarez|
Recently we had a great victory as a result of being strong advocates. As most people are aware, there has been an effort orchestrated by real estate developers to have the building codes changed in New York State to require less accessibility in new construction. Given that there is already a shortage of housing for people with disabilities, this was a terrible idea from our perspective.
Members of ADAPT demanded a meeting with a high-ranking policy adviser to Governor Pataki. During this meeting in Albany on December 5, 2001, there were more than 50 people with disabilities waiting for the results and another 50 people in New York City at the Governor's office on Third Avenue. Meanwhile, disability advocates from across New York were jamming the telephone lines in Albany with personal messages about how the Building Codes issue would impact them.
The demonstration in New York City was organized by members of ADAPT, DIA, and me in my capacity as one of the regional coordinator of the Systems Advocacy Network. We connected with the independent living centers and worked together. While it certainly is great news that we defeated the real estate developers, I am most encouraged with how we came together on this issue.
The Systems Advocacy Network is intended to create an army of grassroots advocates that can quickly respond to various issues. Most of the independent living centers are participating in the Systems Advocacy Network and either have or will hire systems advocates. Really, it all boils down to organizing our community. By getting more people involved with advancing our concerns, public officials won't be able to ignore us.
It is exactly this type of coordinated effort that will leverage our power and make us more successful in the continuing battle for our civil rights.
Disabled In Action has a long history of advocacy; however, we have been lacking in direction and resources of late. On the other side of the equation, the independent living centers have more resources than DIA and provide excellent direct services, but the issues facing our community are more than any one center can handle. As the Systems Advocacy Network is getting started, it seems like a perfect match for DIA members to get involved with the various independent living centers and for the centers to reach out to DIA.
For more information about contacting the systems advocate at the local independent living center, call 888-4NYSILC or check out http://www.nysilc.org/.
"My name is T.K., and I'm an advocate." While there isn't a twelve-step program associated with this condition, I hope the
"advocacy bug" infects everyone in our community.
Editor's Note: On December 19th, the Building Codes Council unanimously voted to retain accessibility/adaptability in 100 percent of new buildings with elevators. They also agreed to talk about improving accessibility / adaptability regulations for buildings without elevators. All this would not have happened without the concerted efforts of disability rights activists upstate and in New York City attending hearings and giving testimony in the summer of 2001 and disrupting the meeting in November to keep the issue on the table before the demonstrations and meetings in December.
Disability rights advocates and about 25 Rochester ADAPT members attended a meeting of the New York State Fire Prevention and Building Code [on November 8, 2001]. The Council was considering a reduction of access requirements in multi-family housing with elevators. Currently, NYS code requires that 100 percent of these units be
"adaptable" or have basic accessibility features like door widths and clear floor space which accommodate people in wheelchairs.
They put off dealing with our issue until the very last minute. Just skipped over it on the agenda. Maybe they thought we would go away. Eastern Paralyzed Veterans proposed to amend the code change to require more accessibility in type-2 apartments. This idea was shot down and the council then discussed and adopted the plan to reduce these access requirements to a disgusting 10 percent.
When the decision was announced, ADAPTer Chris Hilderbrant began shouting
"Access is a Civil Right." ADAPT members took control of the exits. The Assistant Director for Code Development became upset started shouting,
"You are out of order!" Chris responded with
"Access is a Civil Right," to which the code guy replied,
"You have no rights in this room."
ADAPTers were now chanting in full force.
"Access is a civil right!"
"Don't Mess with my Access!" They then threw themselves to the ground to force council members to symbolically walk all over people with disabilities. The meeting was adjourned, and council members attempted to leave through a side door only to discover it was blocked from outside by Rochester ADAPT's own Cindy Thrush.
State troopers were on the scene quickly. People recognized many familiar faces. Eventually they were able to drag power chairs out of the doors in order to allow council members to escape. It is worth noting is that a good number of council members supported the need for accessible apartments, but still the council failed to have enough votes to maintain our level of access. Other advocates were clearly impressed with the power of ADAPT.
Activists block door at Albany Building Codes Meeting
|Photo by U-Wen Wong|
We then visited the Governor's War Room (foyer) and requested a meeting with Mark Kissinger (an undersecretary who works on code issues). Everyone knew the drill. This is where we always go to torment the Governor. ADAPT got a meeting scheduled with him on November 27th or 29th. We raised a great deal of ruckus today, but we need additional follow through. All of Albany has been put on notice that if they do not resolve the problems with the new code by meeting and working with ADAPT, we will be visiting the Governor to demand he fix it himself.
The media was all over this one. The Associated Press was there as were a number of more local newspapers. Reporters were amazed that people climbed out of their chairs and laid on the floor to block people's way. When he was getting background information from me, one reporter specifically mentioned Debbie Bonomo. His comment: She was HEATED!
We played with the Walmart ads and had posters talking about
"rolling back" accessibility percentages. One poster showed a person knocked out of the wheelchair and on the ground after being his on the head by one of these percentages. Above the poster warned,
"Caution: Falling Accessibility Percentages." Of course, these were punctuated with the not-so-smiley face mimicking the one in their ads.
ADAPT should be proud of the leadership team that managed this action: John Blevins, Debbie Bonomo, Adele Car, and Chris Hilderbrant did the ADAPT name proud. Everyone worked hard on this action and much sleep was lost as we prepared in the final hours.
The ADAPT/Disability Rights Team in New York made a good show and embarrassed the Governor on this issue. The Statewide Independent Living Council, Eastern Paralyzed Veterans, Independent Living Centers and ADAPT worked well together. With little planning we all did what we each do best! We didn't expect to keep them from making the change today, but they know we are angry and are not going away!
Thanks to Chris Hilderbrant and Brad Williams (NYSILC) for reporting....
Free Our People
"How do you spell POWER?"
The hotel meeting room is packed way beyond capacity. My Quickie is sandwiched between a power chair and a scooter, the wheels of another manual chair are pressing against my footrests. In the power chair is Marva from Detroit, on the scooter is Barbara from Memphis. I don't know the young man in the manual chair, this must be his first ADAPT action. I spot Frank Lozano being guided through the wall-to-wall maze of wheelchairs.
"Uncle Frank!" I yell out to him.
"How are you? Nadina here!"
His head turns in the direction of my voice:
"Hey! How are things in the big apple?" I love Frank's Tex-Mex drawl. He's from El Paso. Now I feel the sleeve of my ADAPT T-shirt being pulled from behind me. I turn around and see my friend Sharon from Kansas City.
"Hope we'll be on the same team," she says.
"Yeah!" I heartily agree.
There are about 500 of us in this DC Holiday Inn. We came from all over the country, some in groups, subsidized by local organizations or independent living centers, some on our own with money saved month after month. 30 or 40 people didn't quite make it into the meeting room. They lingered a little too long in the halls hugging each other and trying to catch up on what's been happening in each others' lives in the six months since the last action. Or they just had to stop on their way to the meeting at one of the tables lining the hallways to buy another T-shirt or a pair of handcuff earrings or a key-chain with the ADAPT logo. Many local groups sell their ADAPT-ware at national actions to help pay for their members' plane tickets and hotel rooms. The colorful tables give the otherwise sober hotel halls a festival-like atmosphere. Now, those who lingered in the halls are lined up, four and five rows deep, at the two doors, trying to make up for their tardiness by yelling A-D-A-P-T louder than those inside the room.
I swear they must hear us throughout this entire hotel. But Mike Auberger, one of our national leaders, from Denver, CO, doesn't think we're loud enough. He's trying to look tough in his power chair in the front of the room. In their chairs alongside him, Bob Kafka and Stephanie Thomas, husband and wife team, from Austin, TX, are smiling.
"Gotta do better than that!" Mike yells,
"Let's try again. How do you spell POWER?"
At the top of our lungs or in a tracheotomy-whisper, with slurred vowels and spastic arms flailing, in the mechanical voice of a communication device, or forcefully fingerspelling with eloquent hands we all -- in anyway we can -- spell A-D-A-P-T!!!
The excitement is mounting. This is the big meeting that marks the start of the real action. All day we've been attending workshops. New people have learned the basics of civil disobedience. The nervous ones have been reassured:
"don't worry, you don't have to be arrested if you don't want to". Tonight we get down to the nitty-gritty. We'll break up into six teams (red team, blue team, green team, yellow...), we'll fill out legal forms, we may even get some
"ADAPT jewelry" (handcuffs, that is, which we'll use to chain ourselves to each other or to gates and other fixed objects). We all listen carefully as Stephie reads off the names of the people on each team. Then Bob tells us who our day leaders (12) and color leaders (5 for each team) are on this action and how to recognize them by the color of the little flags they carry or have mounted on their wheelchairs.
Day leaders and color leaders are very carefully chosen from among those who have distinguished themselves at previous actions and those who have been recommended by their local groups. Day leaders pretty much lead the action. They'll make quick decisions throughout the day (do we keep blocking the doors? do we escalate?). They'll go in to negotiate and they'll talk to the media. They'll keep the color leaders informed and work closely with them. Color leaders lead the troops. They'll move the people according to plan, make sure their team gets where it's supposed to be and does what it's supposed to do. They know who on their team is willing to get arrested and they'll get them ready when it's time. They'll get everybody charged up when we're escalating and try to keep the excitement alive with chants and talks when we're sitting around waiting.
Yes, ADAPT is run like the army. Most of the 500 people here -- the foot soldiers -- only know we've come to FREE OUR PEOPLE. They have no idea of what our specific targets will be, nor do they know the amount of planning and strategizing that precedes an action. They will be ready early in the morning to join their team and, led by their color leaders, they will
"single file" to an unknown destination. ADAPT is careful -- some would say obsessively so -- about not letting information leak out. ADAPT's meticulously wrought plans have been blown in the past. There are stories of undercover cops in wheelchairs -- more likely someone told someone who told someone else... However it happened, ADAPT will not let it happen again. You just try asking a color leader
"where are we going today?" You could be the guy's mother he's not going to tell you.
Some will say
"single filing" is another ADAPT obsession. You just try rolling alongside a friend carrying on a conversation and a color leader (maybe Weasel from Grand Rapids) is sure to yell:
"single file!" Single filing makes it possible to move 500 people without need of permits; we won't block traffic... though we will stop traffic, you can bet on that. I always try to imagine what those motorists are thinking who stopped at an intersection to let what they thought was a bunch of crips on an outing go by and a half hour later they're still sitting there while we keep going by and by and by... Nothing is more awesome than the endless ADAPT single file. 500 of us of every shade, shape and size, tiny bodies and huge ones, some utterly still, some wildly spastic, some with missing parts, with all kinds of appliances, in all kinds of chairs, scooters, and gurneys... one behind the other just coming at you and coming and coming...
We always know we're approaching our destination when we start picking up speed. If we look at our leaders we notice their face muscles tensing up. Their voices get louder:
"Go! Go! Go! No gaps! Keep moving!" Things must be done just right now! The single file will usually break up into separate lines when we reach our target, as the different teams are led to the front, the sides, the back of the building.
"Block the doors! Block the doors!" the leaders are yelling. And we're chanting faster and faster, furiously:
"Free our people! Now! Free our people! Now!" Lots of doors usually in the front of a building -- half the red team goes toward the left, the other half toward the right, the green team joins in while blue and yellow head in opposite directions going for the side doors... It all happens so fast! It may look like chaos but every move has been carefully orchestrated.
Nothing is overlooked by the ADAPT warriors laying siege to a building. If there are low windows we'll park our wheelchairs in front of them to prevent people from climbing out; if there are steps leading to a door, a few of us in lightweight manual chairs will get carried up to the door. People get very angry, at times, when they realize they can't get out. They may try to force their way out, yell obscenities at us from open windows, or try the personal approach:
"I have a disabled uncle, I understand your plight so just let me out." They very well may try climbing out of windows, as the Republicans did in October 2000 in DC when we surrounded their Headquarters and spoiled the party they were having. The leaders advise us not to argue with people. We just stare at them and chant:
"Just like a nursing home, you can't get out!" and
"We're ADAPT, you're trapped, get used to it!"
At times the plan is not to surround the building but to get inside. Walking people will rush to the doors, hold them wide open while we file in, through every door at the same time as quickly as possible, confounding the security guards... Till we fill the lobby, make it reverberate with the sound of 500 people chanting:
"Our homes not nursing homes!"
"Free our brothers, free our sisters, free our people now!" Fourteen year-old Kyle might lead the chant through his Liberator (communication device). Maybe a team will be led to the elevator bank, we'll push all the buttons and as the elevators come down we'll park our wheelchairs half-in half-out of each elevator door... If there are people in the elevators as the doors open, we'll savor the shock on their faces first, then let them out. Maybe another team will take the elevators to go upstairs and occupy someone's office.
"We're here for a meeting with the commissioner," a day leader (maybe Barbara Toomer from Salt Lake City or Linda Anthony from Harrisburg) will tell the dumbfounded office worker who will sputter:
"But...but you don't have an appointment." The answer, of course, is always the same:
"We don't need appointments, we're ADAPT" and everyone starts chanting:
"How do you spell power? A-D-A-P-T!!!"
It can get pretty damn exciting! I've been doing ADAPT actions for the past 10 years, I've worked as color leader and day leader, and yet each time I get as excited as I did on my first action. Now that I'm not as young as I used to be, when I feel the adrenaline rushing through my veins, I can't even enjoy it. I have to worry whether the medication I took in the morning will be enough to keep my quickly rising blood pressure from reaching the dangerous level.
But the excitement doesn't stay at the dangerous level throughout the action - thank goodness. As soon as things quiet down a bit (when the teams are where they're supposed to be, the building is secured, the offices are occupied), the color leaders will go around to tell everyone exactly where we are and why we're here, and to read to us ADAPT's list of demands. Color leaders and day leaders will continue throughout the action to give updated reports:
"No response yet," or
"They've invited our negotiators in," and
"They're talking." At times we'll wait and wait and wait -- for hours -- for a response, for a meeting to be set up, or while the negotiating goes on. The color leaders will do their best to keep the chanting going, or they may come around with snacks or lunch. ADAPT pays no attention to fat and cholesterol intake. The ADAPT lunch is typically McDonald's hamburgers and french fries. I'll pass on it and get my banana and granola bar out of my bag. After lunch we'll chant again and wait...
You know what? It can get pretty damn boring! But you know what else? Everyone stays put. No one ever says:
"I'm tired of waiting around, I'll go for a little stroll now." Everyone knows how important everyone's role is. Of course, it may happen that someone feels ill or has to go to the bathroom real bad. A color leader will get someone else to take his place so no gaps are left. It may happen that one team is in the sun. Quadriplegics and people with MS, who cannot sit in the sun for long, will go visit with another team that's in the shade and members of that team will take their place.
ADAPT actions are held in the spring and in the fall when the weather is most mild. Of course, with the weather you never know. We've sweated in Memphis, TN and in Washington, DC. We've sat in the rain in our ADAPT ponchos in Lansing, MI and in Atlanta, GA. And we froze our butts in Columbus, OH. It was 70 degrees the first day we were in Columbus (Fall '99). The next day we were thrown into the middle of winter - mean wind, wet snow falling. Because of post-polio, I am extremely sensitive to the cold. And I was totally unprepared - I had not thought of packing my winter coat. We sat for three hours outside the Human Services Building (in order to get the local ADAPT chapter to start meeting with their Medicaid Director), till all my joints were stiff and aching, my teeth chattering. When the police started arresting us, I saw the accessible school buses they had brought to transport us to the police station and all I could think of was:
"Those school buses are well heated." I must have said
"thank you" at least ten times to the policewoman who pushed my chair to the bus. I've never been so happy to be arrested.
Over 200 of us were arrested during the Columbus action. Every effort is made by ADAPT so that arrests are carried out in as orderly a manner as possible. Color leaders know who on their team is willing to be arrested. They will tell them where to position themselves. We'll use handcuffs to chain our wrists or the wheels of our chairs together to make it harder for the police to move us. Right before arrests start, usually, color leaders will make sure that people have not changed their minds, that those being arrested for the first time are not too nervous, that all who are being arrested have identification, and that they have any medication they need in the original bottle.
In the early days of ADAPT, activists were roughed up badly by the police while being arrested and after the arrest they often spent the night in jail. Very rarely now does anyone get sent to jail. It did happen to John Blevins from Rochester, NY. John is Deaf. He rushed to hold a door open for people to file into the AARP building during the Fall 2000 action in DC. He did not hear the cop who had been trapped behind the door and was yelling at John to let go. John was quickly thrown to the ground by another cop and charged with assault. ADAPT's lawyers got the charge dropped but he did spend two nights in jail.
Usually the worst charge pressed against us is
"disorderly conduct." We are booked and then released. Later the lawyers will appear in court for us and settle the matter. Even when things go very smoothly, though, the process takes many hours. We always all wait around while everyone is questioned, photographed and fingerprinted. ADAPT's rule is:
"we get arrested together, we leave together." We may not get back to the hotel till the middle of the night. No matter what time it is, there is always a group waiting to welcome back those who were arrested.
But we don't always get arrested. They didn't arrest us in Memphis (May '97) and they have not arrested us in DC the last few times we were there. Sometimes when they don't arrest us they make things more difficult for us. In Memphis about 100 people had occupied the Office of the Governor of TN, while the rest of us filled the lobby and spilled outside and made a lot of noise. When ADAPT demanded a meeting with the Governor, we expected one of two things to happen: some form of dialogue to start (our negotiating team was ready to go in) or the police to start arresting us. But we waited and nothing happened. No word from the Gov's office and no arrests. We couldn't just leave. So our people spent the night up in the governor's office while the rest of us held an all night vigil outside the building. We sure got lots of media coverage in Memphis.
When there are no arrests, Spitfire from Philadelphia is very disappointed. She's been arrested 48 times and is anxious to make that number a nice round 50. She was sure she'd reach her goal at the action in Washington DC (May 2001). We were all sure. We were expecting the worst from the new administration.
"Dubya will tell the DC police to throw us all in jail," was the word going around. But were we in for a surprise!
MAY 2001 - The D.C. Action
The target for the first day's action is the Department of Health and Human Services (HHS). We surround the Humphrey Building (HHS headquarters) and demand a meeting with Secretary Tommy Thompson. Through the Clinton years ADAPT met regularly with HHS Secretary Donna Shalala and much was accomplished through those meetings. Not wanting to lose its connection with HHS, ADAPT had been trying to meet with Thompson since his appointment - but with no success. 500 people at his doorstep make Thompson quickly come around. Actually, Thompson is in Geneva, Switzerland. But from there he agrees to meet with ADAPT.
Since it's still early enough in the day when we get the written confirmation of the meeting with Thompson, , we go on to pay a visit to our old foe, the American Health Care Association (AHCA), which is the nursing home owners' professional organization. ADAPT demands that AHCA fund an ADAPT-written
"Notification of your rights under Olmstead" to be distributed to nursing home and other institutional residents across the country. With 500 activists surrounding the AHCA headquarters, ADAPT wins a meeting with President and CEO Dr. Chip Rodman, to start working on the brochure. We return to our hotel chanting:
"How do you spell power? A-D-A-P-T!"
The next day, demanding that within 30 days Bush issue an Executive Order to implement Olmstead, ADAPT hits the White House. ADAPT activists have been arrested while chained to the White House fence a few times in the past. We're ready to be arrested at the White House fence again. But we have not even been here an hour when 15 ADAPT representatives (and a sign language interpreter) are invited into the White House for a meeting with John Bridgeland, Director of the President's Domestic Policy Council. I'm one of the fifteen.
"No problem," Bridgeland assures us,
"the Order will be out in 30 days, maybe sooner." Diane Schacht, Special Assistant to the President for Justice Policy, then accompanies us out:
"The Executive Order will be completed and signed within 30 days," she says, addressing the crowd. And the crowd roars:
"How do you spell power? A-D-A-P-T!"
The third day brings yet another victory. ADAPT rolls up to the Housing and Urban Development (HUD) Headquarters to demand a meeting with Secretary Mel Martinez. Two previous attempts to set up a meeting had failed. ADAPT activists quickly surround the building, blocking all doors. The 3-foot high orange metal barricades and the scores of police officers in front of the building do not stop us. A group of activists actually breaks through the barricades, goes through the doors and into the building. That really gets things moving. Our negotiating team is invited in and after about an hour comes out accompanied by Daniel Murphy, the Secretary's Chief of Staff. He announces the meeting to the crowd that once again cheers:
"How do you spell power? A-D-A-P-T!"
Everyone is triumphant. But there are a few who are wondering if ADAPT isn't getting too powerful. They're starting to worry that, if this trend continues, future actions might not be as exciting as they were in the past.
As always, three days of actions end with a party. There's music and dancing way into the night, raffles and bargains at the ADAPT-ware tables. New friends exchange addresses and phone numbers, old friends exchange gifts and promises. There's gossip going around: who fell in love with whom this time? In the past we've had birthday celebrations. We all remember Spitfire's 50th when the surprise gift was a male stripper. We've even had a few ADAPT weddings and there are rumors there'll be another wedding at the next action in the Fall in San Francisco.
The morning after the Action, the hotel lobby is crowded with ADAPT activists lugging their suitcases, shower chairs, air mattresses and other equipment, waiting for their rides to the airport or to the train station. Everyone looks exhausted. A few might be hung over. We've all had little sleep, for four days we've survived on cold hamburgers and candy bars; we've really pushed ourselves to the limit. We'll need a few days to recover when we get back home. But everyone is elated, exultant. Everyone is feeling powerful and proud. As we all hug each other, the refrain sounding off in every direction is not
"See you at the next action!"
In 1999 the United States Supreme Court rendered the historic Olmstead decision. For the past two years lawyers, advocates and government officials have been interpreting this landmark case and have been gradually moving toward compliance with Olmstead. Basically Olmstead stands for the proposition that segregation based on disability is a form of discrimination.
While we have made some progress with implementing Olmstead in NY, a key component of this project is Consumer Directed Personal Assistance (CDPA), which is potentially in jeopardy in New York City. CDPA allows people with disabilities the maximum control over there lives by letting people take responsibility for the hiring, scheduling, training, firing, etc. regarding their attendants. In New York City CDPA is provided by Concepts of Independence, Inc.
Without going into the details, there were some management problems at Concepts that led the Human Resources Administration (HRA) to step in and demand changes and accountability. Concepts responded accordingly and has made changes in its management and procedures to address the situation.
However, HRA continues to demand further changes from Concepts which will fundamentally alter the delivery of CDPA Services in New York City. Specifically, HRA wants to prohibit consumers from serving on the Board of Directors of Concepts and wants to mandatorily install an automated telephone scheduling system as used by traditional medical agencies.
By way of historical background, Concepts was created by people with disabilities to meet the unique needs of a relatively small population of New Yorkers with disabilities when the City decided to contract with vendors for the provision of Personal Care Services. The people that founded Concepts tended to be younger and have significant disabilities that required the Personal Care Attendant (PCA) to have very specific training to their unique disability health related needs. Additionally, because of the educational and employment activities of these individuals, the scheduling of PCAs would have been an obstacle with a traditional agency.
It is not a mere coincidence that the word "Independence" is incorporated into the name of the entity. This notion that people with disabilities can live independently is a central and guiding philosophy. An important element of any CDPA Program is consumer control of the governance. Likewise, the ability to have people work when you want, or need them, is critical.
If you are wondering,
"How does a problem with CDPA in New York City relate to Olmstead?" consider this: Most people that use Concepts have unique health needs that the traditional agencies are unable to handle and presumably this is why people make the switch to Concepts.If people are forced to seek services from a traditional Medical-Model agency, it isn't unreasonable to think that some people will deteriorate and ultimately end up in nursing homes. Such a scenario sounds like discriminatory segregation based on disability.
January 8, 2002 -- The U.S. Supreme Court today narrowed the reach of the Americans with Disabilities Act of 1990, ruling that the
"impairment" must prevent a person from performing tasks important to daily life before it can be considered a
"disability" enabling an individual to sue for protection against disability discrimination.
"It is insufficient for individuals attempting to prove disability status under this test to merely submit evidence of a medical diagnosis of an impairment," Justice Sandra Day O'Connor wrote in the 18-page opinion.
The decision, although expected by disability rights advocates, is nonetheless dismaying.
"The Williams case is just another in a line of cases where the Supreme Court has constricted the scope of coverage under the ADA," says Georgetown University Law School's Chai Feldblum.
"When Congress passed the ADA it intended to cover people with a range of medical conditions, including things like carpal tunnel syndrome," she insisted.
"The hornet's nest Ella Williams has gotten caught up in has to do the fact that the ADA's definitions are vulnerable to restrictive readings" -- and the court has done that over and over. What the courts have said is that because a person's
"impairment" does not
"substantially limit" enough of a
"major life activity," then they're not disabled under the law.
"It's an absurd way to apply a civil rights law," says Feldblum,
"but it's the reality of where we are today."
In its amicus brief to the Supreme Court, American Trucking Associations called this
"keeping the lid on ADA litigation." If the business community has its way, workers with conditions like Williams' and other
"nontraditional" disabilities who face discrimination on the job because of their injuries (repetitive motion injuries accounted for more than a third of the 1.7 million workplace injuries reported in 1999, according to the Bureau of Labor Statistics) will never even get a chance to make their case in court.
"We are at a high-water mark of the Supreme Court's articulation of the Americans with Disabilities Act," says Peter David Blanck, law professor at the University of Iowa and Commissioner on the American Bar Association's Commission on Mental and Physical Disability Law.
"was supposed to focus on 'the wheelchair bound,'" not
"carpal tunnel syndrome or bad backs!" said Justice Sandra Day O'Connor during the oral arguments.
"Why are the Supreme Court Justices so uneducated when it comes to disability rights?" asks constitutional law expert Ruth Colker of Ohio State University School of Law, who says O'Connor's archaic use of the term
"wheelchair bound" signals her lack of understanding of disability rights in general.
Disability rights legal experts say that employees like Ella Williams who have repetitive stress injuries are precisely those individuals Congress sought to protect under the law. The Justices' narrow interpretation of the law would
"cut large numbers of people with significant disabilities out of the law's protection in a way the people who wrote the law would never have dreamed would happen," says Fordham University law professor Matthew Diller.
For more information and links on this and other ADA cases, go to http://www.accessiblesociety.org/topics/ada/williams2.htm
Many advocates may not realize that disability rights are actually addressed in TEN federal laws, which have been on the books for years. When people think of disability rights, the first piece of legislation that comes to mind is the Americans with Disabilities Act -- and with good reason. The ADA is the most far-reaching piece of federal civil rights legislation to be passed since the Civil Rights Act of 1964. However, there are nine other laws about which advocates should be aware that address the rights of people with disabilities:
Using information provided by the Federal Government, each of the ten laws is summarized below.
AMERICANS WITH DISABILITIES ACT
The ADA prohibits discrimination on the basis of disability in employment, State and local government, public accommodations, commercial facilities, transportation, and telecommunications.
To be protected by the ADA, one must have a disability or have a relationship or association with an individual with a disability. An individual with a disability is defined by the ADA as a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment. The ADA does not specifically name all of the impairments that are covered.
Section 255 and Section 251(a)(2) of the Communications Act of 1934, as amended by the Telecommunications Act of 1996, require manufacturers of telecommunications equipment and providers of telecommunications services to ensure that such equipment and services are accessible to and usable by persons with disabilities, if readily achievable. These amendments ensure that people with disabilities will have access to a broad range of products and services such as telephones, cell phones, pagers, call-waiting, and operator services, that were often inaccessible to many users with disabilities.
FAIR HOUSING ACT
The Fair Housing Act, as amended in 1988, prohibits housing discrimination on the basis of race, color, religion, sex, disability, familial status, and national origin. Its coverage includes private housing, housing that receives Federal financial assistance, and State and local government housing. It is unlawful to discriminate in any aspect of selling or renting housing or to deny a dwelling to a buyer or renter because of the disability of that individual, an individual associated with the buyer or renter, or an individual who intends to live in the residence. Other covered activities include, for example, financing, zoning practices, new construction design, and advertising.
The Fair Housing Act requires owners of housing facilities to make reasonable exceptions in their policies and operations to afford people with disabilities equal housing opportunities. For example, a landlord with a
"no pets" policy may be required to grant an exception to this rule and allow an individual who is blind to keep a guide dog in the residence. The Fair Housing Act also requires landlords to allow tenants with disabilities to make reasonable access-related modifications to their private living space, as well as to common use spaces. (The landlord is not required to pay for the changes.) The Act further requires that new multifamily housing with four or more units be designed and built to allow access for persons with disabilities. This includes accessible common use areas, doors that are wide enough for wheelchairs, kitchens and bathrooms that allow a person using a wheelchair to maneuver, and other adaptable features within the units.
AIR CARRIER ACCESS ACT
The Air Carrier Access Act prohibits discrimination in air transportation by domestic and foreign air carriers against qualified individuals with physical or mental impairments. It applies only to air carriers that provide regularly scheduled services for hire to the public. Requirements address a wide range of issues including boarding assistance and certain accessibility features in newly built aircraft and new or altered airport facilities. People may enforce rights under the Air Carrier Access Act by filing a complaint with the U.S. Department of Transportation, or by bringing a lawsuit in Federal court.
VOTING ACCESSIBILITY FOR THE ELDERLY AND HANDICAPPED ACT
The Voting Accessibility for the Elderly and Handicapped Act of 1984 generally requires polling places across the United States to be physically accessible to people with disabilities for federal elections.
Where no accessible location is available to serve as a polling place, a political subdivision must provide an alternate means of casting a ballot on the day of the election. This law also requires states to make available registration and voting aids for disabled and elderly voters, including information by telecommunications devices for the deaf (TDDs) which are also known as teletypewriters (TTYs).
NATIONAL VOTER REGISTRATION ACT
The National Voter Registration Act of 1993, also known as the "Motor Voter Act," makes it easier for all Americans to exercise their right to vote. One of the basic purposes of the Act is to increase the historically low registration rates of minorities and persons with disabilities that have resulted from discrimination. The Motor Voter Act requires all offices of State-funded programs that are primarily engaged in providing services to persons with disabilities to provide all program applicants with voter registration forms, to assist them in completing the forms, and to transmit completed forms to the appropriate State official.
CIVIL RIGHTS OF INSTITUTIONALIZED PERSONS ACT
The Civil Rights of Institutionalized Persons Act (CRIPA) authorizes the U.S. Attorney General to investigate conditions of confinement at State and local government institutions such as prisons, jails, pretrial detention centers, juvenile correctional facilities, publicly operated nursing homes, and institutions for people with psychiatric or developmental disabilities. Its purpose is to allow the Attorney General to uncover and correct widespread deficiencies that seriously jeopardize the health and safety of residents of institutions. The Attorney General does not have authority under CRIPA to investigate isolated incidents or to represent individual institutionalized persons.
The Attorney General may initiate civil law suits where there is reasonable cause to believe that conditions are
"egregious or flagrant," that they are subjecting residents to
"grievous harm," and that they are part of a
"pattern or practice" of resistance to residents' full enjoyment of constitutional or Federal rights, including title II of the ADA and section 504 of the Rehabilitation Act.
INDIVIDUALS WITH DISABILITIES EDUCATION ACT
The Individuals with Disabilities Education Act (IDEA) (formerly called P.L. 94-142 or the Education for all Handicapped Children Act of 1975) requires public schools to make available to all eligible children with disabilities a free appropriate public education in the least restrictive environment appropriate to their individual needs.
IDEA requires public school systems to develop appropriate Individualized Education Programs (IEP's) for each child. The specific special education and related services outlined in each IEP reflect the individualized needs of each student.
IDEA also mandates that particular procedures be followed in the development of the IEP's. Each student's IEP's must be developed by a team of knowledgeable persons and must be at least reviewed annually. The team includes the child's teacher; the parents, subject to certain limited exceptions; the child, if determined appropriate; an agency representative who is qualified to provide or supervise the provision of special education; and other individuals at the parents' or agency's discretion.
If parents disagree with the proposed IEP's, they can request a due process hearing and a review from the State educational agency if applicable in that state. They also can appeal the State agency's decision to State or Federal court.
The Rehabilitation Act prohibits discrimination on the basis of disability in programs conducted by Federal agencies, in programs receiving Federal financial assistance, in Federal employment, and in the employment practices of Federal contractors. The standards for determining employment discrimination under the Rehabilitation Act are the same as those used in title I of the Americans with Disabilities Act.
Section 501 requires affirmative action and nondiscrimination in employment by Federal agencies of the executive branch. To obtain more information or to file a complaint, employees should contact their agency's Equal Employment Opportunity Office.
Section 503 requires affirmative action and prohibits employment discrimination by Federal government contractors and subcontractors with contracts of more than $10,000.
Section 504 states that
"no qualified individual with a disability in the United States shall be excluded from, denied the benefits of, or be subjected to discrimination under" any program or activity that either receives Federal financial assistance or is conducted by any Executive agency or the United States Postal Service. Each Federal agency has its own set of section 504 regulations that apply to its own programs. Agencies that provide Federal financial assistance also have section 504 regulations covering entities that receive Federal aid.
Requirements common to these regulations include reasonable accommodation for employees with disabilities; program accessibility; effective communication with people who have hearing or vision disabilities; and accessible new construction and alterations. Each agency is responsible for enforcing its own regulations. Section 504 may also be enforced through private lawsuits. It is not necessary to file a complaint with a Federal agency or to receive a
"right-to-sue" letter before going to court.
Section 508 establishes requirements for electronic and information technology developed, maintained, procured, or used by the Federal government. Section 508 requires Federal electronic and information technology to be accessible to people with disabilities, including employees and members of the public. An accessible information technology system is one that can be operated in a variety of ways and does not rely on a single sense or ability of the user.
For example, a system that provides output only in visual format may not be accessible to people with visual impairments and a system that provides output only in audio format may not be accessible to people who are deaf or hard of hearing. Some individuals with disabilities may need accessibility-related software or peripheral devices in order to use systems that comply with Section 508.
ARCHITECTURAL BARRIERS ACT
The Architectural Barriers Act (ABA) requires that buildings and facilities that are designed, constructed, or altered with federal funds, or leased by a Federal agency, comply with Federal standards for physical accessibility. ABA requirements are limited to architectural standards in new and altered buildings and in newly leased facilities. They do not address the activities conducted in those buildings and facilities. Facilities of the U.S. Postal Service are covered by the ABA.
To learn more about how to file complaints under these various laws and to receive the exact legal citations, visit the following web site: http://www.usdoj.gov/crt/ada/cguide.htm
(c) - Western Law Center for Disability Rights, 2001 - http://www.wlcdr.org/. Check out this site to get updates that pertain to disability law and struggles for equality. To subscribe via the World Wide Web, visit http://lists.everybody.org/listinfo/wlcdr-announce or, via email, send a message with subject or body 'help' to firstname.lastname@example.org
Coming to DIA meetings doesn't automatically make one an activist. It happens slowly. Networking is a great place to start. I also recommend becoming a member of Citizens Union to stay on top of what's happening in city government. Usually, activism is sparked when you feel so strongly about a situation that you can't keep quiet any longer. Yes, the battle may be personal, but the results almost always benefit others. I recently came across a book that I think all DIA members, active or not, should read. It's called the Activist's Handbook, A Primer (Updated Edition) by Randy Shaw. To pique your interest, I have broken down the chapters so you can see what a must-have the book is:
Ch. 1 - Don't Respond, Strategize
Ch. 2 - Elected Officials: Inspiring Fear and Loathing
Ch. 3 - Coalition Activism: Rounding Up the Unusual Suspects
Ch. 4 - Ballot Initiatives: The Rules of the Game
Ch. 5 - The Media: Winning More Than Coverage
Ch. 6 - Lawyers: Allies or Obstacles to Social Change?
Ch. 7 - Direct Action: ACTing UP and Sitting In
Ch. 8 - Getting Started: Agenda Setting and Action Plans
Ch. 9 - Conclusion: Activism for the Twenty-First Century
You can order the book from University of California Press at http://www.ucpress.edu/ or calling 1-800-822-6657. No, I am not related to the author, nor do I have any interest in University of California Press. I simply think the book is a good start for all the disabled folks and friends out there who have wanted to get involved, but felt uneasy or unsure. I believe that anger, when used constructively, can become an effective lead-in to activism. At DIA, there are too few people doing too much. Help is needed. Activism is NOT a spectator sport!
I was born on December 1, 1949. I was three months early, and only weighed one pound, fourteen ounces. I was put into an incubator and, due to the amount of oxygen I was given, my retina cells developed too quickly, and became so damaged that by the time I was brought home from the hospital, I was totally blind. I of course have never seen and have absolutely no visual memories at all.
My parents decided that they would try to treat me as normally as possible, and although I often heard the word
"blind" I did not really know what it meant. I was guided by my mother, or by my aunts. I was always made a fuss over because people said I was such a
"cute little boy." Many lamented my fate, but I was carefree and happy. When I was about 5 years old, I began to realize that I was different from other children. I heard children running around without being guided. Kids talked about coloring, drawing, and writing with a pencil. When I asked my mother, she told me that I would go to school and learn to read and write braille. I knew I was different, but I of course did not understand the ramifications of my blindness, and took all in stride.
When I was about 8 years old, I began to realize that other kids made friends more easily than I did. I went to a school far from my home, and was taken there by bus. There were other blind kids at the school, and I noticed that we all stayed together. When we did go to classes with the sighted kids, we were treated kindly, but were not fully included. I would sit for hours listening to kids read out loud from print books, or hear the teacher writing on the black board. I loved the sound the chalk made against the blackboard, but I realized that others could read what was being written, and all I could do was listen to the sound of the chalk.
I will skip a few years and talk about when I was 14 years old, and in the ninth grade. I began to be teased by the other blind kids, because I mostly wanted to play with the girls, and did not want to participate in the rough games the blind boys played. They would play a kind of hockey with a large wardrobe and a crushed cigarette box. Where the wardrobe touched the wall on each side were the goals and the cigarette box was the puck. The blind kids played another game called taxi, where one of us would sit in a chair and the other would move the chair around the room very quickly. Because we were blind, the person pushing the chair would often bang into things.
I was afraid of these games because I was always overweight, slow, clumsy, and I usually wound up getting badly hurt. I much preferred sitting and reading a braille book, or talking to the girls. I even learned to bounce a ball, and learned some of the rhymes the girls would say while playing ball or jumping rope. I was teased unmercifully, and soon, even the girls got tired of playing with me, and so I mostly stayed alone, reading, and listening to what was going on around me.
I knew that I was very different from the other kids, and I felt horribly lonely. I didn't fit in with the sighted kids, but what was worse, I didn't fit in with the blind kids, either. All the boys were interested in sports and rough games. I wasn't. Some talked about girls, but because I was blind from birth, and because nobody ever talked to me about sex, I had no idea what was being discussed. I am ashamed to say that I didn't even know the difference between girls and boys, except that girls were usually nicer to me, and yet, I felt a strange feeling when hugging a male student.
When I was 15 years old, a girl explained to me how babies were born.
"You're very stupid!" Harriet told me.
"Your father stuck his penis in your mother's hole, and that's how you were born. Don't you know anything?" I wanted to ask more questions. Where was this hole? What was all this talk about
"erections?" But I knew that if I admitted how little I knew, I'd be laughed at, so I kept quiet. I could not ask my mother. She never talked about such things, and I knew she would only be upset and tell me not to ask so many questions. So, I ordered books in braille about sex, and read them, and had a vague understanding.
What is surprising, and very important, is that I began to realize that I was attracted to other boys and men, and not to women. I realized that I had a strange feeling when close to people of my own sex that I did not have when I was with women. I somehow knew that this was not the way it should be, and never mentioned it to anyone.
I will now talk about my college years. I spent 4 years at a well-known college in Ohio. I had finally figured out that I was gay. I wondered if there were other gay students, but did not know how to meet them. I tried dating girls, and forced myself to kiss them, but I knew it wasn't working. I wanted to talk about my feelings, but had nobody to express them to. When I was a senior, some students who I had heard were gay decided to start a discussion group. I wanted to go, but was afraid to ask for directions to where the discussion was taking place, because I did not want others on campus to realize I was gay.
To understand my dilemma, it is important to realize that I was not able to fit in with the other students because of my blindness. I had some casual friends, but I was not part of any social group. I spent much time alone, or being read to by fellow students. I therefore was very uneasy about admitting that I was gay, because I was afraid I would be even more unaccepted than I already was. I felt that I had enough strikes against me by virtue of the fact that I was blind and overweight. I didn't have the courage to add another problem to the list. During my four years at college, I never had any gay friends, and never even knew that one of my roommates was gay. I kept all of my feelings inside.
Now, I must talk about my two years in France. I went to France through an American program, and I stayed there for two years. I arrived in France after my graduation from college. I met two blind guys who were gay. One was a fellow from Algeria, and the other was a blind French guy. I had my first experiences with them. I wanted desperately to meet other French gay people, but was afraid to ask my classmates. I had no access to printed materials, and no way to try to meet French gay people.
When I returned from France, I got a job working with non-English-speaking kids who needed help with reading and speaking English. I badgered my parents until they helped me get my own little studio apartment. I still live in this apartment, as rents are very high in NYC, and I am presently on a fixed income because I took an early retirement. But getting back to my story: when I finally had my apartment, I decided I was going to try to meet gay people. I was now free from my parent's restrictions, and I had a guide dog. So, I was ready to conquer the gay world! But how could I find information? I had nobody to read printed material to me dealing with gay subjects. I had no way to know who was gay and who wasn't. I wondered how sighted gay people met. I finally called a gay hotline and was given the names and addresses of some gay bars. I was told about a group called
"mirth and girth" which is for overweight gay people. (In Montreal, I think the group exists under the name Club Panda.)
I remember my excitement when my guide dog and I set out for our first gay bar. We got off the subway at Christopher Street, a street in the heart of Greenwich Village. I asked for directions to the bar, but once inside, I realized that this wasn't going to work! First of all, the noise level was incredible! I couldn't hear a thing. Second of all, because I couldn't see, I had no idea what was going on around me. I was basically rendered deaf and blind because of the noise level. I sat at the bar, and felt worse and worse as time went by. Nobody tried to talk to me. I finally got the courage to tap the person next to me, and to try to strike up a conversation. The guy was polite, but after talking with him a while, he told me he was with someone. I realized that I had no way of knowing who was alone, who was with someone, and what was going on. I went to other bars on subsequent days, but had no better luck.
I began to realize that being blind was proving to be a barrier in my meeting gay people. I decided that perhaps the problem was the fact that I was overweight. So, I decided to go to a Mirth and Girth dance. Surely, there would be people much heavier than I was, and surely I'd have a better time. Well, unfortunately, the same thing happened. I was shown to a seat, and there I stayed. Nobody came over to talk to me. I finally left and vowed I would never try to meet gay people in this way. It wasn't working, and I was feeling worse about being blind and being gay than I ever had in the past.
Imagine walking down a heavily gay populated street. You see a blind person with his guide dog. You probably don't stop to ask yourself,
"Is he gay? Could he want to talk? Would we have something in common?"
What is my situation now? Well, for a long time, when my attempts to meet other gay people weren't working, I abandoned the idea, and went about my life without thinking very much of being gay. Things changed to some degree about six years ago, when I got my computer which gave me access to different gay e-mail lists, and I was able to write a version of this article which is on the chanton.com website, a website for gay men seeking pen pals. The URL is http://www.chanton.com/blindandgay.html.
Some people contacted me after having they read my article. Although I had hoped for a bigger response, I did make a few truly wonderful friends. One friend in particular, David from Montreal, has turned out to be a real delight. We speak often by phone, and I visit him in Montreal at least two to three times a year. I also have been able, to some degree, to be more in the know of what is going on in certain segments of the gay community.
I feel one can never have too many friends, and I hope that this article will be a catalyst for me to meet other people, especially other disabled gay people. I was interested to learn that many people with HIV suffer visual problems, and I would like to see more communication between people born blind like me and those who went blind later in life from HIV or other complications. I think we could teach each other a great deal, and broaden each other's horizons. For example, I know what it is like living with blindness, but these people had careers and lived full gay lives as sighted people perhaps never even having met a blind person, so our perspectives are quite different. As an example, I have a new friend who was fully sighted and was a costume designer. He is losing his sight from diabetes. He has been a wonderful resource to me, and he says I have helped him, too, which makes me truly happy.
I would like to encourage gay people to get to know disabled gay people, and through communication, I believe barriers can be knocked down. In my own case, having access to the gay community has been a difficult process, but things have improved greatly for me. And, I certainly must thank my beautiful guide dog, Harley, who is so handsome, intelligent, and friendly that he often helps break the ice when people are hesitant to speak to me.
Remember, whether we can see or not, whether we can hear or not, whether we can walk or not, we are all human beings with the same needs, desires, wants, dreams, and hopes. We are not as different as our outward appearance would make one think at first glance.
I hope that this article has given you a glimpse of what it is like being a totally blind, gay man. I want to thank Nadina for suggesting that this article be published in the Activist. If anyone would like to contact me, my e-mail address is: email@example.com.
Emergency Evacuaton Procedures for Employees with Disabilities
A Service of the U.S. DOL Office of Disability Employment Policy
Job Accommodation Network
West Virginia University
P.O. Box 6080
Morgantown, WV 26506-6080
1-800-526-7234 in the U.S. (Voice or TTY)
1-800-ADA-WORK in the U.S. (Voice or TTY)
This publication is intended to provide an overview of emergency procedures for employees with disabilities. The Americans with Disabilities Act of 1990 (ADA) requires that employers, public services, and public accommodations and services operated by private entities modify their policies and procedures to include people with disabilities. This means that employers may be required to provide reasonable accommodations to employees so they can evacuate during emergencies. If visitors are allowed on the work-site, a business may want to invite voluntary disclosure about whether they require assistance in an emergency.
Though individuals with disabilities may have specific needs and concerns, all employees will benefit from knowing workplace safety features and emergency procedures. Because some individuals with disabilities require a personal attendant or job coach, it is important that these individuals are also consulted. In addition, many workplaces contract with cleaning crews, security guards, and other services that may have employees with disabilities on staff.
Throughout this publication JAN's Searchable Online Accommodation Resource (SOAR) is referenced. SOAR is available on JAN's Web site at http://www.jan.wvu.edu/soar and is designed to let users explore various accommodation options. Many product vendor lists are accessible through this system; however, JAN provides these lists and many more that are not available on the Web site upon request. Contact JAN directly if you have specific accommodation situations, are looking for products, need vendor information, are seeking a referral, or are interested in discussing emergency procedures for employees with disabilities.
POLICIES AND PROCEDURES
"buddy system,"where people with disabilities arrange for volunteers to alert them and assist in an emergency, in effect?
WORK-SITE MODIFICATIONS AND ACCOMMODATIONS
"help"sign to alert rescuers that people are in this location;
"Two Way Radios as Accommodations."This is available at http://www.jan.wvu.edu/corner/vol01iss09.htm
"Disability Etiquette Tips for Speaking Engagements."
"fire fighter's carry"may be harmful to some individuals.
This publication was written by Beth Loy, Ph.D., and Linda C. Batiste, M.S., Human Factor Consultants with the Job Accommodation Network. 09/20/01
Job Accommodation Network
A Service of U.S. DOL Office of Disability Employment Policy
West Virginia University
P.O. Box 6080
Morgantown, WV 26506-6080
800-526-7234 & 800-ADA-WORK (V/TTY)
304-293-7186 (Local Line, V/TTY)
Office of Disability Employment Policy
1331 F Street NW
Washington, DC 20004-1107
1331 F. Street, NW, Suite 100
Washington, DC 20004-1111
800-872-2253 (Voice) / 800-993-2822 (TTY)
Eastern Paralyzed Veterans Association (EPVA)
75-20 Astoria Boulevard
Jackson Heights, NY 11370-1177
Federal Emergency Management Agency (FEMA)
500 C Street, SW
Washington, DC 20472
National Safety Council
11221 Spring Lake Drive
Itasca, IL 60143-3201
National Fire Protection Association (NFPA)
1 Batterymarch Park
Quincy, MA 02269-9101
800-344-3555 / 617-770-3000
San Francisco Chronicle - December 2, 2001 -
"Imagine visiting your 85-year-old mother in the hospital after she has a debilitating stroke. You find out that, in order to survive, she requires a feeding tube and antibiotics to fight an infection. She once told you that no matter what happened, she wants to live.
But the doctor refuses further life-sustaining treatment. When you ask why, you are told, in effect, "The time has come for your mother to die. All we will provide is comfort care."
Sound far-fetched? It's not. It's already happening.
Just as doctors once hooked people up to machines against their will, now many bioethicists advocate that doctors be permitted to refuse life-sustaining treatment that a patient wants but that they deem
Alarmingly, hospitals in California and throughout the country have begun to implement these
"futile-care" policies that state, in effect:
"We reserve the right to refuse service."
Medical and bioethics journals for several years kept up a drumbeat advocating the implementation of medical futility policies that hospitals -- for obvious reasons -- don't publicize. The mainstream news media have generally ignored the threat.
As a consequence, members of the public and their elected representatives remain in the dark as
"futilitarians" become empowered to hand down unilateral death sentences.
Indeed, futile-care policies are implemented so quietly that no one knows their extent. No one has made a systematic study of how many patients' lives have been lost or whether futile-care decisions were reached according to hospital policies or the law.
The idea behind futile care goes like this: The patient wants life-sustaining treatment; the physician does not believe the quality of the patient's life justifies the costs to the health institution or the physical and emotional burdens of care; therefore, the doctor is entitled to refuse further treatment (other than comfort care) as
Treatments withheld under this policy might include antibiotics to treat infection, medicines for fever reduction, tube feeding and hydration, kidney dialysis or ventilator support.
Of course, physicians have never been -- nor should they be -- required to provide medical interventions that provide no medical benefit.
For example, if a patient demands chemotherapy to treat an ulcer, the physician should refuse. Such a
"treatment" would have no medical benefit.
But this kind of
"physiological futility," as it is sometimes called, is not what modern futile-care theory is all about. Treatments are not refused because they don't provide any medical benefit, as in the case of chemotherapy to treat an ulcer.
Rather, they are refused because they actually sustain life -- such as a feeding tube does for a persistently unconscious patient.
It isn't the treatment that is deemed futile but, in effect, the patient.
Early attempts to impose futile care upon unwilling patients and families were often ad hoc. For example, a few years ago I received an urgent phone call from a distraught woman who told me that her 92-year-old mother's doctor was refusing to give the woman antibiotics for an infection.
When I asked why, she said,
"He told me my mother was going to die of an infection sooner or later, so it might as well be this one."
I advised the woman to get an attorney and threaten suit. That apparently did the trick. She later called to tell me her mother was being treated and was well on the way to recovery.
In 1994, the parents of a premature infant sued to prevent the imposition of futile care upon their son, "Baby Ryan" Nguyen, after doctors told them they were ending his kidney dialysis.
The doctors and hospital did not take the Nguyens' defiance lying down. They filed an affidavit requesting the right to refuse to provide treatment, claiming that Ryan's condition was
"universally fatal" and that continuing life-sustaining treatment was a violation of their ethics and autonomy.
Astonishingly, a hospital administrator even went so far as to report the Nguyen family to Child Protective Services for
"physical abuse and physical neglect" of Ryan based on the parents' success in obtaining the injunction to keep their child from death.
The case could have had a major legal impact on the entire futile care debate. But the trial judge never decided who had the ultimate right to determine Ryan's fate. The case ended when Ryan was transferred to a Portland hospital, where a different physician successfully weaned him off dialysis. Ryan lived four years, a happy if sickly child who gave high-fives and was the delight of his parents' hearts.
Cases like Baby Ryan's led futilitarians to pursue a more sophisticated approach to securing their agenda. Rather than have doctors act on their own accord or file lawsuits seeking permission to refuse wanted care, which had been attempted on several occasions with mixed results, many futilitarians began to argue that hospitals adopt written futile-care policies establishing formal procedures by which wanted life-sustaining treatment could be refused.
Although given little attention in the news media, these policies have been extensively described in medical and bioethical publications, such as the Journal of the American Medical Association, the New England Journal of Medicine and Health Progress.
Most policies set up internal hospital procedures that work like this:
Futile-care protocols are designed to thwart legal action by patients or their families. The strategy is to stack the deck by convincing judges that they, mere lawyers, are ill-equipped to gainsay what doctors and bioethicists have decided is best.
In the Cambridge Quarterly of Health Care Ethics, authors urging implementation of futility policies wrote last year:
"Hospitals are likely to find the legal system willing (and even eager) to defer to well-defined and procedurally scrupulous processes for internal resolution of futility disputes."
Considering that California legislators recently enacted a statute that appears to authorize futile-care impositions upon the sickest patients, that may be a winning strategy. Section 4735 of the California Probate Code states that a doctor or hospital
"may decline to comply with an individual health care instruction" that runs contrary to
"generally accepted health care standards." This means that once futile care becomes mainstream, the law will permit doctors to refuse wanted treatment that runs contrary to their values -- even if such care is necessary to keep the patient alive.
This little-noticed law raises an urgent question: How many California hospitals have already promulgated futile-care policies? Unfortunately, no one knows. But there is little doubt that the number is growing fast.
Authors of the Cambridge Quarterly article surveyed 26 California hospitals, including UCSF, Kaiser Permanente, Stanford, UCLA and Cedars-Sinai. Without identifying the hospitals, they reported 24 had protocols in place that
"defined nonobligatory treatment" in terms that were not
"physiology based" -- in other words, a treatment that has no medical benefit.
"nine policies assigned the final decision-making authority to the responsible physician."
Other policies gave the power to hospital committees, the chief of staff or the hospital administration. Tellingly, only seven protocols permitted the patient or patient representative to have the final say.
As if this weren't enough cause for alarm, Sen. Arlen Specter, R-Pa., has introduced federal legislation to let doctors deny life-sustaining treatment against the will of the patient or the patient's family.
The Health Care Assurance Act (S24) is a 171-page bill with noble ambitions to expand health coverage for children and disabled people. Buried in the bill's bowels is a provision that permits hospitals to withhold care that is determined to be
"either futile or otherwise not medically indicated."
The bill would be a disaster for the most vulnerable, disabled and defenseless among us -- patients who are too often dehumanized and callously viewed as parasites on limited health care resources.
Then there is the very real potential that bigoted doctors would apply futile-care policies in a discriminatory fashion. Indeed, a 1996 study published by the Mayo Clinic found that
"CPR was more likely to be considered futile if the patient was not white."
Implementing futile care to control health care costs doesn't add up. Since only about 10 percent of the nation's entire health care budget goes to end-of-life care, little would actually be saved.
But cost control isn't the ultimate point for futilitarians.
As many of them see it, if the nation were to swallow futile care theory, it would establish the principle that health care can be explicitly
"rationed" -- a euphemism for discrimination against people who are elderly, disabled, chronically ill, dying or otherwise
"expensive to care for."
Seen in this light, medical futility is the foot in the door that would begin the step-by-step descent from a health care system based on Hippocratic principles --
"First, do no harm" -- to a system in which access to medical care is restricted to some but open to others.
Futile care is not the finishing line of this important ethical and legal struggle, but merely the starting gate of a far longer race.
Wesley J. Smith is the author of
"Culture of Death: The Assault on Medical Ethics in America."
Activist Editor's Note: Not Dead Yet (NDY), a U.S. disability rights group opposed to legalization of assisted suicide and euthanasia, spoke out in support of a draft report issued by the U.N. Human Rights Committee in July. The Committee expressed concern over how euthanasia is performed in the Netherlands because some doctors there are ignoring the strict guidelines under which euthanasia was decriminalized. Stephen Drake, a research analyst with NDY, said that
"in spite of admitted widespread abuses, only a handful of doctors have even been prosecuted for violating guidelines. Out of that group, the ones who have been convicted of violating Dutch protocols have received suspended sentences and other legal equivalents of a light slap on the wrist."
For example, a physician killed his elderly patient without her consent or knowledge and without consulting other doctors. He was found guilty and given no sentence. Diane Coleman, NDY's president, fears that this type of thing could occur in Oregon, too, where there is an assisted suicide law.
CONCORD, N.H. (AP) - When Carol Nadeau was born with a rare bone disease, her parents were horrified by suggestions they put her in an institution.
"She's coming home with us," they informed the doctors.
Fifty-two years later, Nadeau is equally horrified by a bioethicist who thinks parents should be able to euthanize severely disabled infants - but she wants people to be able to hear him anyway.
"I feel his philosophy is totally flawed, but I'd like people with disabilities and the general public to take a look at this person's views, and, at the same time, look at their own views," said Nadeau.
Princeton University's Peter Singer, whose views have enraged many, is one of the panelists invited to attend a conference [October 5, 2001] organized by the Governor's Commission on Disability, where Nadeau works.
Singer first detailed his views on euthanasia in his 1979 book, Practical Ethics. He wrote that children less than a month old have no human consciousness and that parents should be allowed to kill a severely disabled infant to end its suffering and to increase the family's happiness.
"Killing a defective infant is not morally equivalent to killing a person. Sometimes it is not wrong at all," he wrote.
His views bother disability groups like Not Dead Yet, which plans to protest the conference along with New Hampshire Right to Life, an anti-abortion group.
"If the Ku Klux Klan's grand dragon was chosen to speak to the NAACP, people would find that outrageous," said Tom Cagle of Not Dead Yet.
Singer, a tenured professor at Princeton's Center for Human Values since 1999, said he hopes his appearance will stimulate needed public discussion.
"If you want to have a conference where people are preaching to the converted and slapping each other on the back, then you needn't invite me," he said Tuesday.
"But if you want to have a conference that challenges how you think and your assumptions, I'm the type of person who ought to be invited."
Cagle fears Singer will later use the conference as evidence that his ideas are being embraced by the disabled community, regardless of the reaction he gets.
"There could be a room full of people throwing tomatoes at him, and I promise you, 10 years from now he's still going to be talking about the reasonable people with disabilities in New Hampshire who approved of him," he said.
Singer said doctors are already quietly withholding treatment to end the lives of infants with severe disabilities.
"Life-and-death decisions are made for infants in hospitals everywhere, including in this country," he said.
"They ought to be made openly, and we ought to consider the basis on which they're made and who should make them."
Singer agreed to give up his $2,000 speaker's fee after the Executive Council, an elected body that reviews state contracts, barred a state payment.
Commission Director Michael Jenkins said the conference will be a good opportunity for the other speakers, many of whom have disabilities, to confront Singer.
"In a public forum, through spirited debate, we can bring these moral and ethical issues to the fore," he said.
"This is a conference about the value of life, not about Peter Singer."
Editor's Note: Following is an excerpt from the Concord Monitor [September 23, 2001]:
"...Some anti-abortionists say Singer is unknowingly their secret weapon because he shows just what a slippery slope their opponents are on. For abortion rights advocates, the question of where to part ways with Singer will certainly be a matter of debate at the conference."
The reporter continues: Dr. Adrienne Asch, the Henry R. Luce Professor in Biology, Ethics and the Politics of Human Reproduction at Wellesley College, spars with Singer regularly at Bioethics conferences around the country.
An abortion rights defender, she has argued for more thoughtful deliberation over prenatal testing and selective abortion.
"Selective abortion, the abortion of fetuses based on their characteristics... is a moral question that should be considered differently from the way it typically is," she said in a telephone interview.
"Women should have the ability to make those decisions, but only after getting more counsel on it... the decision is being made by professionals on the view that disability is a terrible way to live. Professionals should learn much more about life with disability, and not assume that the only solution is to eradicate it."
Where Singer's views sharply contrast with her own, Asch believes confrontation is healthy.
"I happen to think that you can't get anywhere by telling people not to talk," she said.
Carmelo Gonzalez, a DIA member, has self-published a roughly written memoir of his life entitled, Rolling On. Carmelo, a wheelchair user and a gay man, writes about growing up in a dysfunctional family, with his father often in jail and his mother and stepfather, who both had drinking problems, frequently fighting. He lived in inaccessible places with steps so he could not come and go without help.
School was either something that was too hard to go to after a late night out with his older sister, or it was a refuge from the tumult at home. He was put in special education classes where the kids tormented each other mercilessly, even about their various disabilities, but Carmelo also made some very good friends whom he would visit on weekends and vacations. Sadly, several of his close friends died in childhood. It wasn't until he was a teenager that Carmelo had a teacher who taught him how to read.
Carmelo was an actor for some years before writing this book. He also made a cross-country trip to California with a group of other people in a van, enduring hardships with the reward of seeing beautiful scenery and meeting people from other parts of the country.
In often graphic sexual language, he portrays his entry into gay life and his relationship with an abusive partner.
Carmelo states that
"being gay and disabled is like being a Chihuahua in a Great Dane's world... because gay men are so into the physical side of a person instead of the psychological and emotional side. So if you don't have a perfect body, they don't want to deal with you. I think they are afraid of me. In a gay world it's all about the way you look, about how perfect your face and body is... When they look at me, I think they see someone they don't want to be. I remind them of their insecurities."
In summary, although the book clearly needs more editing; the material was so interesting that it propelled me through the book.
Fair Housing Act Design Manual
"Fair Housing Act Design Manual," originally published in 1996, has been revised and re-published, with a new Preface, by HUD's Office of Fair Housing and Equal Opportunity. To assist designers and builders in meeting the accessibility requirements of the Fair Housing Act, the manual provides comprehensive information about accessibility requirements that must be incorporated into the design and construction of housing covered by the Act. The Act's requirements apply to a broad range of housing units-buildings with four or more units built for first occupancy after March 13, 1991, both privately owned and publicly assisted, and regardless of type of ownership (sale or rental).
The Fair Housing Amendments Act of 1988 makes it unlawful to deny the rental or sale of a dwelling to a person because that person has a disability. In addition to giving people with disabilities greater choice in where they live and more freedom to visit family and friends, the Act proactively addresses the needs of an aging population by looking at future needs. Housing designed in accordance with the Fair Housing Act - with accessible entrances, wider doors, grab bars, etc. - will enable more people to remain in their dwellings as they age and continue to live independently.
The manual contains explanations and uses detailed illustrations to explain the application of the Act's requirements -- including the regulations and the Fair Housing Accessibility Guidelines -- to all aspects of multifamily projects. Part one of the manual includes an overview of the Fair Housing Act, outlines other national laws and standards that regulate accessible design, presents the types of building covered by the Act, and briefly discusses the different types of disabilities. The second section contains detailed and illustrated explanations of the seven design requirements of the Fair Housing Accessibility Guidelines. The final part of the manual is an appendix that includes a reprint of the Guidelines, a reprint of the Supplemental Notice to the Guidelines, a list of product resources, and a list of selected references.
"Fair Housing Act Design Manual," visit the HUD USER Web site at: http://www.huduser.org/publications/destech/fairhousing.html. Updated pages are available for those who already have the 1996 edition. Due to limited quantities, orders are limited to one copy.
P.O. Box 6091
Rockville, MD 20850
HUD Website for People with Disabilities
This site has lots of information and links for people with disabilities: http://www.hud.gov/groups/disabilities.cfm
Abilities Expo Information
The Abilities Expo is a great way to see, learn about, and perhaps test or buy scooters, wheelchairs, accessories, accessible vans, medical supplies, bikes, exercise equipment - you name it, they've got it! Free printed information on products and disability rights is there for the taking, and you can buy T-shirts and food (long lines for expensive fast food, though). There are tables for eating lunch and gathering, and the restrooms are accessible. One of the best things about Expo is being in the majority and meeting new people or connecting with ones you already know. There are seminars for parents with children with disabilities and seminars on many topics for adults with disabilities. They have a special computer section with adaptations for people with disabilities. Come with your questions!
How to get there? It's 30 to 45 minutes from Manhattan by car. DIA usually has 2 accessible buses going there one of the days (for information call the DIA number: 1-718-261-3737) or you can get there by accessible New Jersey Transit. There is a free accessible shuttle to the convention center from the Metuchen train station. Call 1-800-385-3085 for Expo information or go to http://www.abilitiesexpo.com/nymetro
April 12-14, 2002
New Jersey Convention Center
97 Sunfield Avenue
Friday, April 12, 2002, 10am-5pm
Saturday, April 13, 2002, 10am-5pm
Sunday, April 14, 2002, 11am-5pm
Lernout & Hauspie Auctions Assets
Lernout & Hauspie (L&H), the speech recognition software maker struggling to emerge from Chapter 11 bankruptcy protection, has auctioned a slew of assets.
Core technology and intellectual property rights were sold to ScanSoft (NASDAQ:SSFT) for $10 million in cash, a $3.5 million note and 7.4 million shares of ScanSoft common stock valued at about $26 million.
The deal includes L&H's text-to-speech, including L&H RealSpeak, and certain of its automatic speech recognition technologies, including the Dragon Naturally Speaking line of products.
"We are especially enthusiastic about L&H's talented research, engineering, sales and marketing employees in both the U.S. and Belgium, its prestigious customer base, and the added strength it brings to our software distribution channels." said Paul Ricci, ScanSoft's chairman and CEO.
ScanSoft, based in Peabody, Mass., expects to retain at least 150 L&H employees. L&H has dual headquarters in Burlington, Mass., and Ieper, Belgium. The sale must be approved by bankruptcy courts in the U.S. and Belgium.
"We are excited that ScanSoft and the other buyers are committed to enhancing the technologies that we have built and furthering the strong relationships that we have established with our broad customer base," said John Shagoury, president of L&H's SLT Group.
For more details, go to http://boston.internet.com/news/article/0,,2001_915531,00.html
By Boston.Internet.com Staff November 28, 2001
DIA Singers Have a CD
The engaging and lively DIA Singers have copies of their tape, "In Motion," now available on CD. The CD of disability songs and the booklet are $15.00, and the CD by itself is $10.00. Contact Frieda Zames at firstname.lastname@example.org to purchase them or to book the singers. The DIA Singers are available to perform at meetings or gatherings.
Changes at MTA: Patricia O'Brien, Augustine Angba, and Steve Nacco Are Gone
In January, Patricia O'Brien, VP in charge of Access-A-Ride, is retiring, and her replacement for the next 3 years will be Howard Ende, from the Department of Buses (AAR is within the Department of Buses). Augustine Angba, who ran the Compliance Coordinating Committee (CCC) meetings, has left to take a position in another city. Steve Nacco, Bus Customer Relations Director in the Department of Buses, has also retired. He has been replaced by Chris Lake.
Special Ed Teacher Fights for her Students, Gets Fired, Sues, and Wins
On November 16, 2001, a special ed teacher in Portland, Oregon, won a million dollar jury award in a trial. The case is known as Pamella Settlegoode v. Portland Public Schools (and her two supervisors). She is a wonderful adaptive PE teacher who complained, in writing, many times to her supervisors about the limited periods of PE that her students had, about lack of equipment and how her students were not given the same opportunities that nondisabled children were. When she was retaliated against and not allowed to do her job, she complained some more. Her letters of complaint were used against her to fire her and she was blackballed by the whole school system. She fought back for the kids' sake, and she won. This case shows the power and value of writing letters and keeping a paper trail and then fighting back.
Want details? Go to: http://www.wrightslaw.com/searchsw.cgi?keyword=settlegoode
A Good Site for Parents of Children with Disabilities
Amazon.com Launches Accessible site
Found at http://www.amazon.com/access, the site is a streamlined version of Amazon.com's standard Internet destination with less text and graphics, providing access to Amazon.com's full line of products and personalization features.
The text and user functions are fully compatible with screen access software, which reads aloud the text and links displayed for the user. The software allows users to enter text, jump from link to link and navigate a site through the use of special keystrokes. On the Amazon Access site, customers can browse, search and utilize 1-Click buying through simple actions.
ADA Watch Coalition News
Jim Ward will soon become director of ADA Watch, a new coalition of national, state, and local organizations united to protect the Americans with Disabilities Act (ADA). Based in Washington, DC and dependent on the support of activists and organizations throughout the nation, ADA Watch has been involved in efforts such as fighting the ADA Notification Act, strengthening the ADA in response to Garrett and other Supreme Court rulings, and advocating for Federal judicial nominees who are supportive of our rights under the ADA.
ADA Watch will be run in partnership with Wired On Wheels, an Internet-based accessibility rating network and 501(c)(3) founded by America Online executive, Debbie Fletter. In 2002, Wired On Wheels and ADA Watch will be launching a national campaign to assess which businesses are accessible to people with disabilities and will provide notice to those that are not in compliance. ADA Watch hopes to work proactively with the business community to ensure that, 11 years after the signing of the ADA, the vision of this important civil rights law is being carried out at the local level.
Check out http://www.adawatch.org/ and http://www.wiredonwheels.org/ for more information and be sure to sign up for their free Action Alerts.
MiCASSA Update - Good News!
Senator Tom Harkin is getting ready to hire the new staff person who will be assisting him on the MiCASSA bill. MiCASSA would allow individuals to choose whether they want to go into an institution or receive
"community-based attendant services and supports" in their own homes. Additionally, MiCASSA would do away with the unevenness in the availability of attendant services.
Meanwhile, Representative Danny Davis (D-Chicago) plans to introduce a House version on January 23! Representative Shimkus (R-Springfield, IL) who is on the Commerce Committee, will co-sponsor the House bill.
Even with all that is happening about national security and the war, we must keep up the push for MiCASSA and real choice. The bill will not become law and the issue will not move without our help.
Contact your senators and congresspeople about MiCASSA NOW and urge them to sign on as supporters of the bill.