Editorial:
'Please don't put me in a nursing home'.
The ad on this page was designed by Lucy Gwin of Mouth magazine, who in her other life was an advertising copywriter. It is available free to anyone who'd like to put it in a local newspaper. It can be downloaded at www.freedomclearinghouse.org
Freedom Clearinghouse is the joint project of Ragged Edge and Mouth magazines. Our purpose is simple: to give advocates the tools and connections they need, online, to make the Olmstead U. S. Supreme Court decision's promise a reality in all 50 states.
Last June, the Court ruled that the Americans with Disabilities Act's "integration mandate" required that states provide services to people in the "least restrictive environment." In January, Donna Shalala, head of the U. S. Dept. of Health and Human Services, sent a letter to all 50 governors telling them they'd better get cracking on enforcing the Olmstead decision (see story, p. 5) "No person should have to live in a nursing home," she said.
The HHS Office of Civil Rights has said it will look into any case of someone being kept in a nursing home when they could be living in their own home, their own community. It has a complaint for you can use for people kept in institutions and nursing homes against their will. That form's available to print out at www.freedomclearinghouse.org.
People from all but a few states and territories have joined the Freedom Clearinghouse effort, and we hope to have folks from Maine, Nebraska, Puerto Rico, South Carolina and South Dakota signed up soon. See the long list of them, state by state at the website.
Freedomclearinghouse.org is also an online source of all kinds of studies and data supporting "home and community-based services," as the jargon says. We have graphs from the Office of Management and Budget, we have tables listing Medicaid waivers, by state. We have facts, figures, and testimony from state Medicaid directors to counter the argument that "if we set up a program that people want, folks will come out of the woodwork and we'll be overwhelmed!" That's called the "woodwork" argument, and it's used to argue against putting money into in-home services; used to keep dollars flowing to nursing homes, just like always. We also have studies you can quote when you're told hiring an attendant isn't "safe."
Visit us.
www.freedomclearinghouse.org -- don't forget.
Can't we have it both ways?
While advocates around the country are scurrying to get their states to implement the Olmstead decision, others are racing to prepare a friend-of-the-court brief for two cases now before the Court challenging the constitutionality of the Americans with Disabilities Act itself -- its Title II, pertaining to state and local governments. The Olmstead victory will be short-lived if the court declares the entire Title II unconstitutional. Olmstead was a Title II case.
Two schools of thought wind through the tortuous history of disability rights ideology. One holds that disabled people are a specific group of people with a distinct culture and past -- a "discrete and insular minority," akin to racial minorities. The other school says that disability is an ordinary condition of all people, something any of us can slip into and out of, depending on circumstances. When we are disabled, goes this second line of reasoning, we are subject to the same invidious bigotry faced by those people who have, for example, been locked away in institutions for drooling, twitching and speech that sounds unrecognizable to others. This school says that people with heart conditions, even if that heart condition is controlled, if it is the reason for of an employer's discrimination, should have the right to themselves of the ADA's legal protections.
Hewing to the first line of thinking, Supreme Court Justice Ruth Bader Ginsburg, in her Sutton decision last year, said that these were not "real" disabled people.
An editorial in last April 26's Los Angeles Times put it this way: "A part of the nation's civil rights legislation, the ADA was conceived as a weapon against prejudice and discrimination. It was not designed to create remedies for aggrieved employees or allow every form of common impairment to be treated as a protected disability. Going beyond the legislation's goal would serve nobody."
Washington Post Supreme Court reporter Joan Biskupic, whether intentionally or not, mimicked the states' anti-ADA argument when she wrote on January 12 that "the justices have accorded age and disability a lesser degree of constitutional protection than race and sex bias claims." Of course, as the above shows, that was not true of last summer's Title I rulings, in which the Court ruled that the ADA was indeed meant to protect that " discrete and singular minority" known as "people with disabilities" -- just not the rest of us.
It seems we can't have it both ways. If the ADA is to avoid being gutted this time around, it will be because Justice Ginsburg's interpretation of last year prevails. But that will mean the ADA is being shaped as a law for the few, the different, the "handicapped." And that it won't protect the rest of us at all.
Getting beyond 'one lawsuit at a time'
What will we do after the dust from the lawsuits settles?" asks Josie Byzek, instigator of the Midtown Sweep (cover story, Jan./Feb.)
On page 10, we report on the continuation of the Sweep in Pennsylvania, as activists take on businesses one by one to force compliance with the ADA's access requirements for public accommodations.
"Systemic change toward access to our communities is very hard," she says. "A civil rights law is not a building code, but the two must be reconciled if we are ever to get beyond making our communities accessible one business at a time.
"We're meeting with small business, historic society, city and state code representatives to put together some kind of boiler-plate access guides that hopefully will really work," says Byzek. "I think we're on the right track in saying that we want Mom-and-Pop businesses to let us in."
But Byzek is worried. "I've seen other great initiatives die when the 'meetings' stage started," she said.
One reason the Midtown Merchants Assn. has been willing to work with Byzek's group, she says, "is directly due to the lawsuits.
"We have a gun; it's called a lawsuit. We've proven we will pull the trigger. And Assn. President Joe DiCaprio has said publicly that now he understands why we did what we did."
But lawsuits aren't enough, she continues. While new construction must be accessible, by law and by building permit, "that doesn't touch the restaurant that closes and reopens as a different restaurant."
"If we had 'triggers' in building permits -- something that at the very minimum informs business owners that they have civil rights obligations in addition to code requirements -- we'd get more access," she says.
All the groups at the table agree to this, says Byzek; but "the code enforcers say they cannot legally promote an access change that is in conflict with another code."
"Here's an example: I apply to the city to install a uni-sex bathroom because my business is too small for to make both a men's and a women's room accessible. But the city turns down my request, because the building code says a business must have both a men's and women's room."
"Right now, we have the state putting together a list of places where the ADA comes into conflict with building codes," she said.
"We're going to figure this out. I don't know what it looks like yet, but we'll get there."
When they do, we'll report it in Ragged Edge.
zzz zzzz.
New item.
Sidebar:
Older women prefer death to nursing homes, says study
Eighty percent of women over the age of 75 would rather be dead than be forced into a nursing home after a hip fracture, says a study conducted by researchers in Australia and released in February.
Any loss of ability to live independently in the community had a "considerable detrimental effect on their quality of life," said the 195 women polled for the study.
End of sidebar.
zzz zzzz.
New item.
Mail.
'Stuck' strikes chord
I agree with Marta Russell's story about unions and home care workers ("Stuck at the nursing home door," January/February). The onion is not in touch with the workers. It would be better if we could care for people in their homes; it is what they want. Unfortunately, to get health benefits you have to go with an agency, and even then the benefits are not very good.
Joan Little
'Jobs at odds with our desires' need to be restructured
Workers deserve living wages, and benefits (good health plans, healthy working conditions, paid vacations, etc.) Both nursing home workers and home care workers deserve this and certainly don't have this yet, by a long shot. Therefore they need unions which fight for these demands.
Crips deserve everything they need to live a productive, happy, healthy and dignified life. For most of us that means independent living, with consistent, quality nursing care if we need it, personal care as well as accessible schools, jobs and communities. For some it means living in more communal situations that meets their needs.
When it comes to policy issues, to priorities in funding, the priority is to continuously evaluate and improve the services, programs, and facilities based first on the needs of crips. If we find something that denies the needs of the crips (most nursing homes which are grossly underfunded jails!) then that has to be reassessed, just as other jobs such as tobacco farmers, pesticide producers, armament manufacturers need to be reassessed. If we determine that those jobs are at odds with our desires for health, peace and justice for all, then we need to redirect these industries to healthy, just, and peaceful ones. And we need to provide retraining and adequate compensation for the workers in the old industries.
The millennium is the time for more grassroots alliances like the Teamsters and Turtles. We need alliances of the crips, nurses, homecare workers, and other health workers. And the alliance has to rethink the priorities we have inherited from a system which has denied the needs of both crips and workers, and radically change them. The needs of crips must be first, just as the needs of the children is first priority in re-evaluating schooling models. And then we need to provide the best working conditions for health workers and teachers in more progressive models.
Hopefully, this discussion is a loving step in building and solidifying that alliance!
Barri Boone
Willits, CA
I been trying, along with a wonderful 24-hr.-care provider, to provide around-the-clock total care for my severely brain injured 24-year-old son who was in a car accident 6 years ago. We live in Oregon.
Oregon has the waiver plan in place, but my son's 24-hour-care provider still cannot get a little well-earned time off. He is exhausted and it is so very unfair that home care workers are still treated this way.
Oregon Rose
A big industry
Nursing homes are a big industry in this country. Many of them do not give proper care. In my opinion, people aren't paid enough to take care of people. Some of the nurses, nurses aides, etc. do only what they have to do. It is appalling what our senior citizens -- and our disabled no matter what age -- have to endure.
The people they have working in the day programs, workshops, and institutions are paid very low wages. The people doing this work are doing it because it is the only job they can get.
Nursing homes tell people they have to transfer from the bed to a chair before they can leave. What a bunch of baloney! An older friend of mine was in a nursing home. She told them, "what's the difference if i can transfer or not? I couldn't do it before I came in and I was home then."
Name withheld by request
The Reeve ad
I was troubled by the Christopher Reeve Superbowl commercial in which he is seen standing and walking, shaking hands and receiving an award, sometime in the future.
I know there are those who have worked long and hard to get persons with disabilities seen more in the media, such as positive images of people in wheelchairs doing everyday things. Now we have a commercial where Christopher Reeve, a man with a complete spinal cord break,a quadriplegic who breathes with a ventilator, hiding his disability with computer graphics to advertise for an investment company. The commercial was seen by 100 to 115 million people in the U.S., and millions more elsewhere.
Just think of the good he could have done if, instead, he had rolled up on stage in a wheelchair to receive the award! What if we had seen a commercial that showed that we don't judge a man's worth by his ability to walk and stand? Think of the positive image that would make: a man, a normal man who has accepted his body and gone on with his life to achieve something the world feels is worthwhile.
I'm not saying that people with disabilities are all heroes for fighting the brave fight against what life has given them. But I am saying that people with disabilities can be heroes too. Not for the "brave fight," but for the same reasons that anyone is a hero.
Christopher Reeve could be a real hero. He does help raise awareness of spinal cord research, and he has helped raise money for it. And maybe the "cure" can be discovered sooner because of his contributions. But let everyone see how he did it. He did it in his wheelchair.
Gary Ray Rogers
San Luis Obispo, CA 93401
For more on the Reeve ad, see page 25. ed.
A waste of ink
Stick with factual reporting. The Gag (November/December) was a waste of ink and paper! Ragged Edge and Mouth should avoid any future collaboration.
Anthony Trocchia
Brooklyn, NY
Fan mail
I'm an avid reader of your publication -- I love the informative articles and the in-your-face reporting! The world needs more reporting like this!
Laura Jane Price
Poughkeepsie, NY
zzz zzzz.
New item.
D. R. Nation
U. S. Dept. of Health and Human Services tells states they must comply with Olmstead decision
A Jan 14 letter to all 50 governors from Sec. Donna Shalala, head of the U.S. Dept of Health and Human Services, told states it's high time to implement the June 22 Olmstead Supreme Court Decision. A state can "meet its obligation under the ADA by having comprehensive, effectively working plans ensuring that individuals with disabilities receive services in the most integrated setting," she wrote, calling on states to "develop and implement such plans, and to involve individuals with disabilities and other stakeholders in the process of design and implementation."
An accompanying letter from Medicaid head Timothly Westmoreland "outlines a framework" to get states to comply with the decision. The letter has been long anticipated by activists working to implement the Supreme Court ruling.
States now must have "a comprehensive, effectively working plan" for people to get services "in less restrictive settings." If the state has a waiting list, it must move "at a reasonable pace not controlled by the State's endeavors to keep its institutions fully populated," says the letter.
The Clinton administration seems to be taking seriously its responsibility for enforcing the ADA integraton mandate. The Feb. 13 New York Times, in a front-page story, called Shalala's letter a "Government Edict."
State Medicaid officials insisted to New York Times reporter Robert Pear that would cost a lot of money to enforce the mandate -- money they tried to suggest they didn't have.
"The Department believes that comprehensive, effectively working plans are best achieved with the active involvement of individuals with disabilities and their representatives in design, development and implementation," said the letter, signed by Westmoreland and Thomas Perez, head of the HHS Office for Civil Rights. "The Administration and DHHS have a commitment to expanding home and community-based services and offering consumers choices in how services are organized and delivered."
The letters from Shalala and Westmoreland are available online through The Freedom Clearinghouse at www.freedomclearinghouse.org/know/officialword.htm. For more on Freedom Clearinghouse, see page 2.
Web access opponents quieted for now
"More and more the Internet is the world," University of Missouri programming analyst Gary Wunder told the House Judiciary Committee's Subcommittee on the Constitution in early February. "It is where we shop and it is where we make our living."
The burgeoning e-commerce industry, restive in the wake of an Americans with Disabilities lawsuit filed in November by the National Federation of the Blind against America Online, wants to argue the ADA doesn't apply to the Web. A showdown of sorts between Web industry libertarians and access activists who packed the room at the Feb. 9 hearing of Rep. Charles Canady's (R. - FL) subcommittee "went very well for our side," according to one of the access advocates. (Canady's subcommittee was the one considering a bill to gut housing access requirements in the last session (See "Anti-access bill stopped -- for now," D.R. Nation, Jan./Feb. 2000.).
Right-wing pundit Walter Olson, author of the anti-rights book The Excuse Factory and one of less than a dozen experts asked to testify, carped about the "ADA's application as a serious threat to the freedom, spontaneity and continued growth of the Web." And there were the usual histrionics about the cost of access.
But Wunder testified that the issue had more to do "with ideological objections to government involvement than the real cost of implementing accessible systems.
"A graphic displayed on a screen may take upwards of half a million computer characters to display, while its text description will take less than 100," he explained.
"The presence of graphics is not the problem," he said. The problem is "unlabeled graphics -- and the design of systems which rely only on graphics.
"I've never seen any figures to indicate that the cost of accessibility is economically impractical," he added.
Many of those close to the hearing said they felt the Subcommittee was satisfied and would not pursue the issue further. Some said the fears of business about making sites accessible came from "misunderstandings about what constitutes Web access," and that once those were cleared up things "settled down." But others said Internet industry groups were "on a campaign to convince Congress that Web access is costly and overly burdensome to business" and said they didn't expect the controversy over Web access to go away any time soon.
The transcript of the hearing is online at www.house.gov/judiciary/na020800.htm
The law on Web access
The ADA, passed in 1990, did not specifically address access to the just-forming World Wide Web.
Section 255 of the Telecommunications Act of 1996, Pub. L. 104-104, codified at 47 U.S.C. Sec. 255, requires telecommunications services and equipment to be accessible, and Section 508 of the Workforce Investment Act of 1998 says Federal agencies must have accessible websites.
Does the ADA apply to the Internet?
"Covered entities under the ADA are required to provide effective communication, regardless of whether they generally communicate through print media, audio media, or computerized media such as the Internet. Covered entities that use the Internet for communications regarding their programs, goods, or services must be prepared to offer those communications through accessible means as well."
Assistant Atty. General Deval L. Patrick,
Civil Rights Division,
U.S.Dept. of Justice, to Sen. Tom Harkin,
Sept. 9, 1996
Gary Wunder testified before a House Subcommittee that a Microsoft program cost him a demotion
in his job
"Microsoft Project is a program which lets people manage the work tasks they've been assigned. Each project has a due date, and if it is large, as many projects are, it will have subtasks which themselves have intermediate due dates.
When a manager looks at his projects, he is presented with a screen showing those projects which are most critical in bright red, and those of less criticality in lighter shades. It is intuitively obvious as he looks at the screen which projects need his immediate attention and which will wait. The calculations done by this program are simple and straightforward: check today's date against the due date of each project and assign a color for display based on the difference between the two. No matter how obvious the technique, that number is still inaccessible to me.
If someone had thought about the nonvisual user when designing this system, it would have been easy to put out a list in order of due dates. A list with the most critical project first and the least critical last would have given me exactly the same information gained by my sighted colleagues, but a mechanism for making that program produce a simple list was not a part of its design.
The information was displayed with only one audience in mindthe visual useralthough there is nothing inherently visual about two dates and the number of days which separate them. In fact, much more effort went into figuring out how to display those projects in a visually attractive color scheme than went into determining their order.
Programs such as the one I have described resulted in my taking a demotion from Project Manager to Senior Programmer. No one had problems with my job performance as long as we used systems which were primarily textual, but five years ago the technology I had available could not help me answer the question of how I would supervise the development, testing, and implementation of new computer systems using the tools which my organization had committed itself to purchase.
Catch 22
When we go to a company which is trying to develop a new product as we did when Microsoft started marketing the Windows operating system, we are told that we need to wait and see whether the product will be accepted by the public. We're assured that blind people are valued customers and that our needs will be addressed as soon as the technology demonstrates its viability. Then, after the product is selling like hotcakes and we're losing access to jobs and information, we're told that it is difficult and time-consuming to modify the existing product."
----
Forced drugging foes stage rally against Calif. bill
Opponents of forced psychiatric drugging are staging a state-wide rally in late February in Sacramento to protest a proposed law -- AB 1800 -- that organizers say would make California the next state with forced outpatient commitment. The bill "loosens the criteria for commitment away from clear behavioral standards, dramatically increases costly inpatient detention time, expands court-ordered outpatient commitment and reduces legal rights and protections," says the California Network for Mental Health Clients, the group organizing the rally.
A similar law may also be proposed in this legislative session in Connecticut.
Forty states now also have laws allowing courts to order people to take their psychiatric drugs against their will, even while living in their own home out in the community. For more information contact the CNMHC at 1-800-626-7447 in Calif., (916) 443-3232 if outside Calif., or e-mail main@cnmhc.com
-----
Work station barriers
You're a rising star in the world of high cuisine . A young chef with impressive credentials, your career is blossoming when a car accident puts you in a wheelchair.
After rehab, you job hunt. A new restaurant is starting up -- you've got the background and talent to run it -- and the owner knows it.
But you can't get up to the stove or the prep area in the kitchen; the space between the storage areas is just too narrow.
It's a new restaurant. Why wasn't its kitchen made completely accessible? ADA access guidelines didn't call for that, so the owner just didn't bother with it.
The story could have a different, happier ending if revisions being proposed to the Americans with Disabilities Act Accessibility Guidelines included a mandated "accessible route to indivdual work stations". But they don't.
The omission has access advocates steaming.
The technical-sounding phrase is found in Section 203.3 of the Preamble in the proposed revisions.
Comment now on new ADAAG guidelines
You can read the proposed revisions online at www.access-board.gov/ada-aba/guidenprm.htm, or get a copy -- cassette tape, Braille, large print, or ASCII disk -- by calling the automated order line at 202/272-5434.
Advocates hope others will write to comment -- March 15 is the cutoff date -- and demand that the "accessible route to individual work stations" be a requirement. If you comment, be sure you refer to "Proposed Rules for ADA/ABA Accessibility Guidelines." Fax your letter to 202/272-5447, or mail them to the Office of Technical and Information Services, Architectural and Transportation Barriers Compliance Board, 1331 F Street, NW., Ste 1000, Washington, DC 20004-1111 -- or email them to docket@access-board.gov ("Comments sent by e-mail will be considered only if they include the full name and address of the sender in the text," says the Access Board).
There's a March 13 public hearing as well -- at the Sheraton Crystal City (1800 Jefferson Davis Highway, Arlington, VA; 9:30 to 5:00) . For more info call 800/872-2253, ext 127 (voice) or 800/993-2822 (TTY) or email yanchulis@access-board.gov
More about other changes you can comment on is available at dr nation online at www.raggededgemagazine.com/drnation.shtml
----
Activists credit coalition with Aroner bill's defeat
Death with Dignity dies a quiet death in California
The proposed so-called "Death with Dignity" Act in the California Assembly, which would have legalized assisted suicide in the state, "died a quiet death on January 31 and. opponents of the bill celebrated winning the battle," said said Jean Nandi of the California Disability Alliance, one of the groups that fought the bill.
"We kept AB 1592 from even being voted on in the Assembly, much less passed," she said. "All our work with the media, with contacting our Assembly members, with endless presentations, with forging links with other opposition groups, and with forwarding other bills to improve end-of-life care, have proven successful."
The bill's sponsor, Assembly member Dion Aroner, had turned the measure into a "two-year bill" when she did not have enough votes to move the bill during the last session, said Nandi. A two-year bill must be acted on by Jan 31 of the second year's legislative session to remain a valid bill. But the bill "never moved" this session -- Nandi attributes this to a coalition of "disability organizations, advocates for the poor, consumer advocates, medical and hospice organizations, Catholic organizations and others" who "succeeded in lining up a majority of Assembly members who committed themselves to voting against the bill."
The Assembly's Democratic majority "did not want to see a vote on such a contentious issue during an election year," said Nandi, and for the same reason the group is confident another such bill won't be introduced at all this year., although "assisted suicide proponents could attempt legalization through California's referendum system."
Some think that proponents will hold off til they are successful in another state, though. "They cannot afford another loss in California," said Nandi. But, she adds, although this battle is won, the war's not over. "It seems clear that the issue will reappear in some form in the future."
-----
'Spirit of ADA' activities get underway
As Ragged Edge went to press, final details were being put in place for the ceremonial lighting of the Spirit of ADA relay torch on Feb. 24, kicking off the months-long series of events up to and surrounding the celebration commemorating the 10th anniversary of the signing of the Americans with Disabilities Act on July 26, 1990.
Formerly called Initiative 2000, the yearlong celebration christened now as 'Spirit of ADA,' got started in Texas with reflections by disability advocates and public officials involved in the ADA's passage. Those opening ceremonies will be followed by a spring of focusing on the threat to the Americans with Disabilities Act from the Courts (see story, page 12).
Advocates nationwide have been asked by the American Association of People with Disabilities to use the occasion to get public officials to publicly sign a Spirit of ADA pledge to uphold the law (see form, below).
The national torch relay will move on from its lighting spot in Houston June 1 and wind through the states, arriving in Washington, DC for national festivities on July 26, ending its route in New York 10 days later.
Torch relay
JUNE
1 Houston
13 Austin
17 San Francisco
19 Los Angeles
21 Phoenix
24 Salt Lake City
27 Denver
30 Topeka
JULY
4 St. Louis
7 Madison, WI
9 Chicago
11 Memphis
13 Jackson, Mississippi
15 Montgomery
17 Tallahassee
19 Warm Springs GA
20-21 Atlanta
22 Columbia, SC
25-26 Arlington/Washington DC
29 Philadelphia
31 Auburn Hills, MI
AUGUST
3 Boston
6-7 New York City
------
Yvonne Duffy dies
Yvonne Duffy, a longtime writer on the disability movement scene and disability columnist for the Detroit Free Press, died January 4 at her home when the respirator on her chair came unhooked. She was 60.
Duffy wrote for many disability magazines, and may be best remembered for her 1970s classic, "All Things Are Possible," her book about the sexuality of disabled women. Detroit ADAPT activist Marva Ways called Duffy "a champion of keeping people informed."
Duffy's executors hope to donate her papers to the University of Michigan.
SSA Holds Work Incentives Workshops
The Social Security Administration is hosting meetings around the country on the Work Incentives Improvement Act and Ticket To Work: Tentative dates are:
MARCH 9 Durham/Raleigh
MARCH 30 Phoenix
APRIL 6 New York City
MAY Austin, Texas
JUNE Philadelphia
JUNE Seattle
AUGUST Denver
For more information or to register, contact Rona Harper at 703/448-6155 (703/442-9015 fax) or by email at conwalconf@aol.com
Make April and May voter registration months, says JFA
Paratransit drivers must register voters
In January, the District Court in Pennsylvania ruled paratransit providers must offer voter registration to their clients, in accordance with the 1993 "Motor Voter" Act. "There are approximately one million people with disabilities who receive paratransit rides and at least 400,000 of these individuals are not registered to vote," says the DC-based, Justice for All, who urges advocates to contact local paratransit providers and "demand that they make April and May Voter Registration Months.
"Insist that paratransit drivers offer voter registration cards to each rider," says JFA, "and collect either a completed registration card or a signed document that indicates that the individual chose not to register to vote."
-----
Access sweeps continue in PA; three Pittsburgh businesses sued
Continuing the "sweep" effort begun by disability activists in Harrisburg, PA, (see the January Ragged Edge cover story), Pittsurgh activists sued 3 popular bars on Pittsburgh's East Carson street area in late January for lack of access. The action was covered by Pittsburgh and other Pennsylvania media.
The Disabilities Law Project, which has handled the lawsuits on behalf of the wheelchair-using plaintiffs, vowed to continue to sue area businesses at the rate of 3 a month until area businesses begin to take seriously their obligations under the decade-old Americans with Disabilities Act. Letters citing access violations had been sent to 21 Pittsburgh area businesses; only 7 bothered to respond.
zzz zzzz.
New item.
Cover story: The ADA's Constitutional Crisis
Note to readers: The print edition of Ragged Edge, as explained below, went to press before we learned that both the Alsbrook and Dickson cases, referred to in the story below, were settled. As we send out this issue on disk and by email, we are waiting to learn if another case will replace these two, or whether the Court will wait until next fall to hear an ADA Title II case. Readers interested in finding out the latest on this issue may visit our website at http://www.raggededgemagazine.com
Or send us an email at editor@raggededgemagazine.com and we will let you know what happened. -- editors.
As Ragged Edge went to press, disability scholars, attorneys and historians were working feverishly to put together a brief to the U.S. Supreme Court in two cases against Title II of the Americans with Disabilities Act.
The effort could save us our Americans with Disabilities Act. If it fails, we could lose our 10-year-old protection from discrimination by state governments. It could also be the start of dismantling our civil rights law completely.
Last summer the U.S. Court of Appeals for the 8th Circuit declared the Americans with Disabilities Act unconstitutional. The appeal, known as Alsbrook v. City of Maumelle, claims that Congress exceeded its authority in imposing the ADA without having evidence to show that the state and local governments had engaged in a historical pattern of discrimination. Another case, Florida Department of Corrections v. Dickson, also calls into question the constitutionality of Title II of the ADA.
Both cases have been chosen for review by the U.S. Supreme Court. Oral arguments will occur in April; the Court should issue a decision in late June.
"At issue is whether Congress had the constitutional authority under the Fourteenth Amendment to enact the ADA," says National Association of Protection and Advocacy Systems' Sharon Masling. The 8th Circuit wrote that "[E]xtension of Title II of the ADA to the State exceeds Congress's authority under Section 5 of the Fourteenth Amendment." The Alsbrook decision ruled Section 504, the ADA's precursor, unconstitutional as well.
"Since July 23, 1999, citizens of Missouri, Iowa, Nebraska, North Dakota, South Dakota, Arkansas, and Minnesota have had no right to file lawsuits against state entities under Title II of the ADA," says Missouri activist Heather DeMian. Those states "do not have to put in curb cuts, buy lifts with buses, or provide interpreters" -- all things required under the ADA's Title II, adds ADAPT's Bob Kafka.
"We are at risk of losing not only Title II as it applies to the states, but as it applies to all public entities." says Masling.
"If we lose these cases, the writing is on the wall, and the majority of the lawyers with whom I have spoken feel that we soon will lose all of Title II," said activist Mark Johnson.
A re disabled people "a discrete and insular minority" "faced with restrictions and limitations, subjected to a history of purposeful unequal treatment, and relegated to a position of political powerlessness"? That's what the ADA's "Findings" Section says.
Congress passed the ADA "against the backdrop of our nation's other civil rights laws, and it expressly invokes Congress' 'power to enforce the Fourteenth Amendment' for the stated purposes of providing 'a clear and comprehensive mandate' and 'enforceable standards' for the elimination of discrimination against individuals with disabilities," the American Civil Liberties Union wrote in its brief to the Court last spring for the Olmstead case.
But the two cases now before the Court claim Congress had no evidence to show that the state and local governments had engaged in a "historical pattern of discrimination," which is why the team working the Alsbrook brief plans to "lay out historical evidence of de facto and/or de jure discrimination against people with disabilities by state and local government" (see sidebar).
Activism
"Sometimes the sky is really falling," says Bob Kafka. "Sometimes there really are real wolves at the door."
Disability activists are calling for vigils and rallies -- one is being planned in Washington, DC for the day the court hears oral arguments. Last year rallies were held Washington both on the day of oral arguments and again on May 12 in what was said to be the largest disability rights rally Washington had ever seen.
On Feb. 11 the first of these rallies kicked off in Little Rock Arkansas, on the steps of the Arkansas State Capitol. Organizers challenged local officials to sign a pledge to renew their support of the ADA.
"There is a long history of states denying us jobs, education, putting us in institutions, and basic civil rights, " said Kafka of Texas, who spoke at the Little Rock rally. "We have been denied the right to vote, serve on a jury, and live in freedom. The ADA is our civil rights law, and we challenge public officials to sign on to renew the pledge. We will fight for our rights."
Masling, who says that "states will undoubtedly be filing a brief urging the Court to find that the ADA does not apply to them," is pressing disability groups to convince state officials to stay off the states' rights brief -- and to sign onto a brief supporting the constitutionality of the ADA.
Last spring, in an push unprecedented in any civil rights movement, disability activists managed to get 19 of the 26 states that had signed "states' rights" briefs in the Olmstead case to remove themselves from the anti-rights briefs, and in some cases, sign briefs supporting the ADA's integration mandate (see, "Mayors, states support Georgia against integration" in the March/April, 1999 Ragged Edge) The Olmstead decision last June 22 was a victory for disability rights.
Law professor Bob Burgdorf, who drafted the original document that would become the ADA, maintains that civil rights laws are meant to cover everyone from discrimination. The Civil Rights Act of 1964 doesn't just protect blacks, though they were the impetus for its passage. You needn't be black to benefit from the Civil Rights Act, Burgdorf points out. He says the ADA was not set up to protect only a small group called "the disabled."
The conviction that the ADA was passed to protect only a "discrete and insular minority," though, shut out millions from the law's protection last June, when Justice Ruth Bader Ginsburg wrote in the decision on the Title I cases that people with heart conditions, monocular vision and other "minor impairments" did not deserve the ADA's protection because they were not intended to be part of that "discrete and insular minority envisioned by Congress."
The Court's "crabbed vision of the territory covered by this important law," as Justice John Paul Stevens wrote in his dissent last June, may now save us Title II.
====
After the Court rules (likely in June), states may no longer be subject to the ADA's requirements:
-- State employers may be able to refuse to hire or fire people with disabilities at will, and may no longer have to provide employees with disabilities reasonable accommodations in the workplace.
-- Depending on the scope of the Supreme Court's ruling, states may no longer have to comply with the ADA's integration mandate or make buildings and services accessible.
-- People in state hospitals, nursing homes and institutions will have no way to use the ADA to get out.
-- State capitols, state courts, state universities won't have to have wheelchair ramps, provide interpreters or make reading material accessible
---
States-rights activists fight ADA
Since July, efforts have been underway by states-rights advocates in several states to get similar rulings out of other Circuit courts.
The state of Maryland, which is in the 4th Circuit, and the state of Florida, in the 11th Circuit, have been pressing the courts to issue rulings on the constitutionality of Title II as well. In late December, Maryland succeeded in getting the 4th Circuit to agree to re-hear the case Amos v. Maryland Dept. of Public Safety & Correctional Services, in which Maryland is seeking to have the courts declare the ADA unconstitutional. Four other Circuit Courts have ruled Title II to be constitutional.
Dickson and Alsbrook are the latest in a series of cases in which states have challenged Congress' power to enact legislation regulating state conduct. Cases in over 20 states argue that the ADA is not constitutional. Florida alone has 4 cases. For a list of the cases, visit our website at http://www.raggededgemagazine.com/extra/
'Purposeful unequal treatment'
The "Findings" section at the start of the Americans with Disabilities Act calls people with disabilities "a discrete and insular minority who have been faced with restrictions and limitations, subjected to a history of purposeful unequal treatment, and relegated to a position of political powerlessness in our society, based on characteristics that are beyond the control of such individuals and resulting from stereotypic assumptions not truly indicative of the individual ability of such individuals to participate in, and contribute to, society. . . ."
What is that "purposeful unequal treatment?" State and local laws, polices and practices from the past that
-- kept people out of government jobs
-- forced people into institutions
-- prevented people from marrying or being a party to contracts
-- denied drivers licenses to deaf people and people with epilepsy
-- barred people with visible disabilities from public places ("unsightly beggar" ordinances)
-- kept people from serving on juries
-- kept people from voting in elections
Much of this, of course, is not in the past, but continues today.
There are many cases in which someone -- or a company or government body -- "discriminated against people with disabilities but were not prosecuted or were acquitted," says disability historian Paul Longmore. There have been instances of state and lower court rulings upholding discriminatory laws or "segregative practices, such as allowing public transportation systems to turn away passengers with disabilities."
The scholars' group working on a Supreme Court brief is also looking at eugenic laws, policies, and proposals on sterilization. Proposals to sterilize blind people or deaf people that never became law are as significant as proposals to sterilize developmentally disabled people that were enacted and enforced, says Longmore.
zzz zzzz.
New item.
Sidebar:
After the Court rules (likely in June), states may no longer be subject to the ADA's requirements:
-- State employers may be able to refuse to hire or fire people with disabilities at will, and may no longer have to provide employees with disabilities reasonable accommodations in the workplace.
-- Depending on the scope of the Supreme Court's ruling, states may no longer have to comply with the ADA's integration mandate or make buildings and services accessible.
-- People in state hospitals, nursing homes and institutions will have no way to use the ADA to get out.
-- State capitols, state courts, state universities won't have to have wheelchair ramps, provide interpreters or make reading material accessible
zzz zzzz.
New item.
Sidebar:
'Purposeful unequal treatment'
The "Findings" section at the start of the Americans with Disabilities Act calls people with disabilities "a discrete and insular minority who have been faced with restrictions and limitations, subjected to a history of purposeful unequal treatment, and relegated to a position of political powerlessness in our society, based on characteristics that are beyond the control of such individuals and resulting from stereotypic assumptions not truly indicative of the individual ability of such individuals to participate in, and contribute to, society. . . ."
What is that "purposeful unequal treatment?" State and local laws, polices and practices from the past that
-- kept people out of government jobs
-- forced people into institutions
-- prevented people from marrying or being a party to contracts
-- denied drivers licenses to deaf people and people with epilepsy
-- barred people with visible disabilities from public places ("unsightly beggar" ordinances)
-- kept people from serving on juries
-- kept people from voting in elections
Much of this, of course, is not in the past, but continues today.
There are many cases in which someone -- or a company or government body -- "discriminated against people with disabilities but were not prosecuted or were acquitted," says disability historian Paul Longmore. There have been instances of state and lower court rulings upholding discriminatory laws or "segregative practices, such as allowing public transportation systems to turn away passengers with disabilities."
The scholars' group working on a Supreme Court brief is also looking at eugenic laws, policies, and proposals on sterilization. Proposals to sterilize blind people or deaf people that never became law are as significant as proposals to sterilize developmentally disabled people that were enacted and enforced, says Longmore.
zzz zzzz.
New item.
States-rights activists fight ADA
Since July, efforts have been underway by states-rights advocates in several states to get similar rulings out of other Circuit courts.
The state of Maryland, which is in the 4th Circuit, and the state of Florida, in the 11th Circuit, have been pressing the courts to issue rulings on the constitutionality of Title II as well. In late December, Maryland succeeded in getting the 4th Circuit to agree to re-hear the case Amos v. Maryland Dept. of Public Safety & Correctional Services, in which Maryland is seeking to have the courts declare the ADA unconstitutional. Four other Circuit Courts have ruled Title II to be constitutional.
Dickson and Alsbrook are the latest in a series of cases in which states have challenged Congress' power to enact legislation regulating state conduct. Cases in over 20 states argue that the ADA is not constitutional. Florida alone has 4 cases. For a list of the cases, visit our website at http://www.raggededgemagazine.com/extra/
zzz zzzz.
New item.
Feature story:
Who will speak for Steven?
The story broke into the national news the week between Christmas and New Year's. A rich Pennsylvania couple, Richard and Dawn Kelso, had been arrested and charged with child abandonment after dumping their 10-year-old Steven at the Wilmington, Delaware's Alfred I. du Pont Hospital for Children.
The Dec. 28 Philadelphia Inquirer reported only that Dawn Kelso had "wheeled her son into the Alfred I. du Pont Hospital for Children around 10:45 a.m. Sunday, then carried in several boxes filled with his possessions, left them in the lobby, and fled." The child was "multiply handicapped."
Dawn Kelso was being held at the Dolores J. Baylor Women's Correctional Institution in New Castle after failing to post $2,300 cash bail. Richard Kelso was being held at the Gander Hill Prison in Wilmington after failing to post $3,000 cash bail, reported the Inquirer.
Soon enough, news reports took on a different flavor. A spokesperson for Greater Philadelphia First , "a civic association of business chief executives from 33 of the region's larger corporations," called the Kelso affair "tragic.
"The only thing I can think of is that it is very difficult to care for a severely disabled child, and be the president and CEO of a major company," said the spokesperson.
Dawn Kelso, 45, had been appointed by Pennsylvania Gov. Tom Ridge in 1997 to serve on the 20-member Pennsylvania Developmental Disabilities Planning Council; her term expired a few days after she'd dumped her son at the hospital. Associated Press Writer Michael Rubinkam reported Council chairman Paul O'Hanlon as saying she'd "expressed frustration in dealing with agencies that sent nurses to her home to care for the boy."
The Ridgaway Philips home health agency told Rubinkam that it "provided nursing care for Steven for 10 hours a day." "And the Kelsos hired nurses for an additional eight to 10 hours a day," wrote Rubinkam.
On March 7, the Kelsos are scheduled to appear in Wilmington Family Court on a child abandonment charge, a misdemeanor punishable by a fine of up to $2,300 and a maximum of one year in jail.
They talked off the record. They recited stories they'd heard.
The Kelsos dumped Steven at the Wilmington hospital every Christmas, they said. This year the hospital had said they didn't have room for him; the Kelsos pulled their stunt and dropped him anyway. Dawn Kelso was rich, said those who knew her as a member of the DD Council. She had little grasp of the problems average disabled people encountered with the system.
Rumor. Innuendo. No one would speak on the record. No one wanted their name associated with what they thought about Dawn Kelso.
"She had piles of services," one source told us. "This was a personal crisis between her and her husband -- not a 'systems' issue.
"Your story should be about the danger of misdirected public debate."
End of first of 3 stories.
Story 2:
Shame. by Josie Byzek.
Josie Byzek works for the Pennsylvania Coalition of People with Disabilities. She writes frequently about disability rights issues.
Dear fellow citizens who so naively believe that parents of disabled kids struggle with challenges the rest of us cannot possibly understand that you tell us not to judge Richard and Dawn Kelso for reaching the end of their rope and abandoning their severely disabled 10-year-old Steven at a hospital in another state: Go to hell.
Even if the Kelsos didn't have matching BMWs; even if Richard Kelso weren't a high ranking executive in a $560 million dollar company; even if the adult Kelsos did not regularly receive 20-hour-a-day service for their son, Steven; even if the Kelsos truly did act out of what they believed to be best for their son; even if every able-bodied person in this country believes that this was a desperate act: I don't care. Go to hell.
Steven, an only child of well-off parents, was dumped in a hospital on Christmas Eve with his toys and meds with a note from Mom.
My God! What must he be going through?
I've been trying to imagine how it went down that day, what it was exactly that snapped and made them decide to throw away their only child. Was it a drunken screaming match between Mom and Dad that eventually wound around to "that crippled, drooling child that makes me sick just looking at him. Dawn, I want him out of here. If you care about our marriage at all, get that retard gone!"
Is that how it went down?
What did Steven think? Could he hear it from his room?
Or was it quieter?
"Richard, its time."
"What, Dawn?"
"It's time."
"Oh, right. I'll get my coat."
Did Steven realize his parents were taking him across the state line to dump him like a pillow-sacked kitten into a cold river?
I spent a day not too long ago with some disability rights advocates in Erie, PA, who were testifying at a hearing to get people out of one of our remaining state institutions. Steve Clark, Mark Boczko and Marge Warner and I sat around and talked about where we were going, and why.
Steve Clark talked about how he was dropped off at Western State Hospital when he was two months old. He finally got out when he was an adult, but it was a struggle.
Marge Warner's father remarried when her mother died. Her stepmother beat her savagely, raising ugly red welts and leaving deep scars. I wonder if Marge's stepmother's friends thought Stepmom a "saint" for "taking care of that man's handicapped daughter?"
When Marge was 13 her stepmother put her in Pennsylvania's Warren State Hospital. From there she was shipped to the Polk institution. Finally, at age 38 with her stepmother dead, she went to Polk administrators and demanded that she be allowed to leave.
Mark Boczko spoke openly about how he had been raped at Polk. Twice.
Conversation wound around to why our parents put us in these places. They say it's to "protect us."
We're not that stupid.
We tried to figure out the truth. One said our parents had had no other services back then, that they did what they thought was best for their child. Julie Prough, a drop-dead blonde as smart as she is beautiful, said, "That's not why. Our parents are ashamed of us. They don't want us."
I hope she's wrong. But I think she's at least partly right.
One of my first memories of my parents fighting was when my brother was just a baby. My dad was chasing my mom around the living room, and my grandmother was screaming at him. The reason? My brother's six-month baby picture. My brother has a visual impairment, and my dad thought he looked too "handicapped" in the picture. (I've never figured out what he meant by that.) He was trying to find out where my mother and grandmother had hidden the picture so he could destroy it.
My college years were spent trying to get sober -- and get through a bad depression that I had been in and out of since I was in grade school. Twice I was told I should be "committed." Twice I talked them out of it.
During those years I had a nightmare. In the nightmare, my mother had committed me to an institution. I cried hysterically, begging her to let me come home. But she walked out, and I was left behind.
It was only a dream, thank God. But like many of us who have been disabled since childhood, I have always known it could be a reality. For Steven Kelso, Steve, Marge and Mark, it has been their reality.
Others of us just have the good sense to be afraid.
The Kelsos threw their child away because of a lack of services? I don't think so. To believe that is to insult all the good parents who manage to keep their children at home -- with far fewer than 20 hours of help a day.
And it is even more of an insult to their children, who deserve to be loved and treasured.
I think Prough is right about the Kelsos: they were ashamed of their son.
Steven Kelso will likely pay double for his parents' shame: First abandoned by his mother, he will now likely also end up in some institution, serving time for his parents' hate crime -- while they drive off into the sunset in their matching BMWs, crying crocodile tears to a gullible press.
End of second of three stories.
Third story:
I am constantly
astonished
that everybody wants to
be seen as understanding and compassionate -- toward the parents.
By Dave Hingsburger.
Dave Hingsburger is involved with the self-advocacy movement for people who have developmental disabilities. The author of 21 books, his writing appears regularly in disability rights magazines.
People offer incredibly positive hypotheses for why the Kelsos abandoned their 10-year-old son: lack of support, their own emotional state, their unpreparedness for their life with him as a son, the severity of the disability. In any other than the disability world, this would be viewed as blaming the victim.
On New Year's Day I tried a little experiment. I was out for brunch with a group of gay men (Brunch, for gay men, is a town hall meeting.); I knew that one of the men had been placed into a private psychiatric institution when he was 12 or 13 years old so that he could be cared for by professionals. The professionals would be able to fix him. He would learn to love differently.
I knew his story from years ago, and during brunch I brought it up. He, having a lot of distance from this now, took my opening and told the story himself, replete with descriptions of his incredible sense of abandonment and rejection by his parents, with whom he has never really reconciled.
After he was done I used the language I'd heard being used to excuse the Kelsos. I said, "Well, we need to understand where the parents were coming from. They might have been suffering from some kind of shock to the discovery that their son was gay. They might have felt that they couldn't be expected to raise him, that his care would be better done by professionals . . ."
I didn't get any further. There was an eruption at the table. People were furious that I would even suggest that abandonment was an appropriate response to the discovery that your child was gay. People shrieked -- I'm not exaggerating -- that a lot of street kids are abandoned gay kids, abandoned by parents who "couldn't cope."
Yes, I expected this reaction. What I was really interested in, while I was being chastised, was the look of absolute peace that came over the man whose story prompted this discussion. He was basking in the understanding and support of his friends, his community.
How must it feel to be a 10-year-old abandoned by your parents?
But there's another question we need to ask ourselves: How must it feel to be abandoned by your community?
End of third story.
Sidebar:
The story that kept going, and going . . .
By Jennifer Burnett.
Jennifer Burnett writes about media and disability issues.
When a news story generates unbridled national interest and happens to involve disability, it will undoubtedly get people in the movement stirred up, talking to each other, e-mailing to listservs and talking to the press if they happen to be on a reporter's Rolodex -- or in this case, a member of the state Developmental Disabilities Council. Which is exactly why Linda Anthony, Director of the Pennsylvania Coalition of Citizens with Disabilities and a DD Council member, spent many hours over the span of a week at year's end talking with a reporter from People magazine.
That story had not yet appeared when Ragged Edge went to press. People magazine reporter Matt Burkback says it's still high on their priority list. "People is waiting to see what the next development is," Burkback told me, "when the Kelsos go to court in March." My guess is that unless the courtroom outcome is sensational, the People story is destined to spend its days in a computer file. Rumor has it that People was having a hard time finding photos to go with the story, and we all know how essential those photos are to a People magazine story.
But the Kelso story did seem to keep going and going. It continues to pop up in stories ranging from one on the shortage of home health care to a feature in the Pittsburgh paper about finding a home for a Pittsburgh teen.
Newspapers in Los Angeles, Chicago, and New York, not to mention the Associated Press, dwelled on the "meltdown" of Steven Kelso's parents, who were charged with child abandonment in Rockland, Delaware, on the day after Christmas. During that first week of coverage, reporters portrayed the Kelsos as overburdened and unable to cope with the constant pressures of raising a child with severe disabilities at home, and sought out interviews with people who could reinforce this "constant pressure" angle. The stories implied that it is OK to abandon a child as long as that child has a disability and would be "better cared for" in an institution.
Two issues that had been bubbling in the media prior to the Kelso drama may have spurred the media frenzy over the Kelsos. The "trend" of teenage mothers abandoning their children has been receiving much press lately. The mothers are routinely vilified by officials and the press. The Kelso story is also about a mother abandoning a child -- but with a difference: the child is disabled. While authorities charge the parents with a crime, media portray them as heroic.
An article in the online magazine Salon.com by Anne Mitchell, identified as the mother of two children with disabilities, praised the Kelsos because they didn't push him off a bridge but instead "took Steven somewhere where people are trained to give him the care he needs." I was deeply disturbed by Mitchell's assertion that the Kelsos were good parents because they did not kill their child.
A second issue receiving a lot of coverage recently concerns the problem people are having with finding quality in-home services ("home health care," the stories call it). In almost all these stories, the focus is on the suffering of the caregiver who can't get help; not on the problems it creates in the disabled person's life. In a January 3 article in The New York Times, reporter Sara Rimer wrote about this issue from the home health agency perspective. The people who had the disabilities were elderly, were considered patients, were described as being in diapers, crying and unable to speak for themselves.
The Kelso affair had elements of both the "need-help" story and the "parent-abandons-child" story. It's little wonder reporters jumped on it and were loathe to let go.
My dilemma was what to do about it. Should I seize this chance to tell the disability rights perspective, or simply rail against the bad publicity we were getting? As a Pennsylvanian I was disturbed by the lack of a strong disability position in the stories coming out. Where were the voices of the thousands of Pennsylvanians able to relate to what Steven was going through, able to give that perspective? Reporters were speaking only to parents, many of whom had empathy for the Kelsos. Or could it be that the extensive interviews did include the disability perspective, but that only those quotes which reinforced the reporter's attitudes ended up in the stories?
When the calls started coming in, requesting information and recommendations for interviews, I had to make what amounted to an ethical decision. I knew that what Steven Kelso's parents had done was dreadfully wrong. I didn't know why they did it , and probably never would know the true story, so I could not really talk about my suspicions. Yet the calls seemed a golden opportunity to get the right message into at least some of the stories.
Was I being a crass opportunist in seizing a chance to tell a story from our perspective based on such tawdry material as the Kelso affair? I hated the fact that it should take a drama such as this to stir media interest. I felt as though I was getting dirty by taking part in the media frenzy. Yet in the end, I did. Although it really was too little too late, at least a few reporters heard from parents who take joy in raising their disabled children.
zzz zzzz.
New item.
What! Department.
They don't like you, either
"I don't like any female comedians."
Jerry Lewis, responding during a question-and-answer session at the U.S. Comedy Arts Festival Retrospective on Lewis' life.
"A woman doing comedy . . . sets me back a bit," Lewis said. "I, as a viewer, have trouble with it. I think of her as a producing machine that brings babies in the world."
Bad judgement
"Extending the ADA's requirements to the Internet would . . . restrict the scope of editorial judgment that could be exercised by web site creators." Dec. 16 memo from House Subcommittee on the Constitution counsel Paul B. Taylor to Congressman Charles Canady about "Application of the Americans With Disabilities Act's Accessibility Requirements to Private Internet Web Sites and Services."
MDA takes money from homeless woman
"I wanted them to get the help," said Leasa Holmes, telling the Associated Press why she'd sent the Jerry Lewis Telethon $20 even though she and her family had lost their home, their possessions, their children's toys in the floods caused by Hurricane Floyd and were bunking with her brother. MDA was shopping the tearjerker story to reporters a few days before Christmas.
Holmes told reporters she'd never given to the Jerry Lewis telethon before, but announcers "caught her ear when they said the money donated during a certain time period would help a sick child get a wheelchair."
Foot-in-mouth
"I apologize to the retarded folks of the world for equating them with the NAACP.'' Republican South Carolina State Sen. Arthur Ravenel, trying in vain to remove his foot from his mouth after referring to the NAACP as the "National Association for Retarded People" at a Confederate-flag rally.
Ravenel "has a 40-year-old son whom he describes as retarded," said the Associated Press.
Life, liberty, perfection?
"They did not cause [Alicia's] birth defects and should not be held responsible for the fact that she is alive." Legal brief of doctors who delivered Alicia Hester and are now being sued for their role in the six-year-old's spina bifida. The Ohio Supreme Court is trying to "determine whether the case constitutes a wrongful life, wrongful birth, impaired life or a medical malpractice claim." Doctors' attorney Ann Ruley Combs warned the judge that a wrongful life ruling would create "the expectation that every child has a right to be born perfect."
The wrong rights
The American Health Care Association "has provided a true voice on behalf of people with mental retardation, their families and guardians and has directly contributed to the Supreme Court's legal affirmation of choice in all residential settings." Pro-institution Voice of the Retarded President Marilyn Straw, giving the group's "Voice Award" to the American Health Care Association nursing-home lobby group. The award was for "upholding the rights of Americans with mental retardation," according to a VOR press release.
Extremely bad humor
"You vow to yourself that the next cripple in a wheelchair you see, you're going to do something nasty and annoying to them." Email message posted in January on a California State University bulletin board by University staffer Jody Dunkel, 22.
It wasn't meant to be taken seriously, he said. He called it "extreme humor."
zzz zzzz.
New item.
No Big Brother Here.
By Mary Frances Platt.
Mary Frances Platt is "a drooling, plugged-in, wheeling radical with a master's degree, the coolest assistance dog on the planet and a penchant for freedom fighting, crip style."
Like most crips, I battle barriers to my wheels, discrimination against my service dog, denial of medical necessities like oxygen and pain medication in general, the right to live independently as an American with appropriate assistive technology, dignity, and with the same rights granted non-disabled Americans.
Unlike most crips in this country, I do NOT have to do battle over my right to live in my home with consumer-directed personal assistance. I receive approximately eight hours of daytime and two hours of nighttime assistance daily.
I hire, train, and, when necessary, fire, my own assistants (sometimes they're called "attendants"). I determine their work schedules and tasks, and I instruct them in exactly the manner in which I want the assistance to be delivered. In other words, I, as the employer, am in total control of my personal assistance program. I live in Massachusetts.
My assistants are paid a living wage $9.65 per hour, and are covered by Workers' Comp and Social Security. If they work Christmas or Thanksgiving, they receive time and a half. Soon we expect to provide health insurance for all our assistants working 20 or more hours per week.
In case of an attendant emergency, the home health agencies in our state are able to fill in with agency-provided "homemakers" and "home health aides" until we are able to put more of our own attendants in place.
Most crips in Massachusetts have the choice of either using a fiscal intermediary or doing the paperwork end of the payroll themselves.
Children living at home can also now receive personal assistance hours.
In Massachusetts, personal assistance is part of our state health plan. For some, like myself, state Medicaid is manifested as Mass Health. Working people with disabilities may also pay into Common Health, which provides the same coverage as Mass Health. In other words, working crips can also get personal assistance services in the state of Massachusetts! A few years ago, a new program was written into the personal assistant program which ensures that people with cognitive disabilities, who need assistance to hire , train, direct, and fire their attendants, may also have access to consumer-directed assistance by means of a "surrogate" who helps them with these tasks.
Once a year, a registered nurse comes to my home and re-evaluates my need for personal assistance. She figures out, using a standard minute-by-minute chart, how long it should take for the specific types of assistance I need, and totals up how many minutes a week I need.
For nine or so years I have had the same knowledgeable, kind, and crip-empowering person evaluate me. We sign a bunch of papers, and the local independent living center, which administers the program, ships them off to my doc, who then signs off on the amount of hours so they're officially approved. Back the paperwork goes to the independent living center. From there it goes to the Mass. Division of Medical Assistance.
Within 30 days, one gets one's hours approved. Sometimes they're modified (most crips expect and get a modification of their hours, but that can be appealed, usually successfully). Once the hours have been finalized with the state Medicaid agency, though, no Big Brother hangs around watching, modifying, or in general snooping on how one runs one's own life with attendants.
If you choose to have a fiscal intermediary, the only paperwork you have to do is to fill out bi-weekly time sheet which documents each assistant's times, hours, and days (or nights) worked.
Over the years, the program has changed and improved, thanks to the work of the Cape Organization for Rights of the Disabled and other Massachusetts independent living centers. Occasional demonstrations, rallies, sit-ins, testimony and letters from Massachusetts crips to state officials have helped keep the program on target.
Because of the continued activism, education, and agitation from Massachusetts' disability community, the state government really understands that it is better to provide in-home, consumer-directed assistance than it is to lock us up in some money-grabbing nursing hole.
Of course I've run into snags over the years with the program. But the funding itself is not a cause of great stress, since it's a strong program that's not going away.
Even though I am often very ill, I usually spend no more than two days in a hospital because whenever I get hospitalized I work with my doc and independent living center to bring whatever I need home. Sometimes I've combined the personal assistance program with a visiting nurse. Often, early intervention, increased emergency assistance and visiting nurse services can prevent hospitalization.
I would fare better, health-wise, in a warmer climate. I would love to have the choice of living in Florida or Arizona or even Hawaii!! But I know when I got it good, assistance-wise and from what I can see, Massachusetts may have the best consumer-directed personal assistance program in the country!
zzz zzzz.
New item.
Homesick song.
By Mary Frances Platt.
These days I sleep when my body loses signals of pain and discomfort. It is 4 p.m. and I am just waking up when the phone, insistent in its urgency, draws me from that delicious haze between dreamtime and realtime.
I manage a garbled "hello" and hear the voice of my Pennsylvanian friend.
"Hello!"
"Are you in Belchertown?" I excitedly inquire?
"Yes I am!"
"Hot shit!" I shout through the phone. "You did it!! Welcome, neighbor!"
My 23-year-old buddy has made a difficult decision. She has left her home state and crip cohorts and moved to a state that would provide her with the amount of personal assistance she needs to live an independent life. Belchertown, my town, an untapped mecca of subsidized accessible housing, has, in only a few months' time, provided her with publicly funded, privately owned, very cool housing: two bedrooms to allow privacy for an overnight assistant, a crip-equipped bathroom, and best of all, a patio and trees!
We are about a mile apart, an easy trip on the well-run local paratransit.
I am lost in thought at the prospect of another activist in town when breathless sobs replace her happy chirping.
First apartment, no furniture, few friends, much fear . . . it's all coming back to me now. My wheelie friend begins to sing her homesick song. Her loss is deep, her grief inconsolable. So I listen, and try to soothe, try to reassure her that she will learn how to shop for herself, that she can make new friends, that her independent life is beginning, and that in the long run, she has indeed made the right choice. I remind her that she can always move back to her parents' if she needs to; that nothing is carved in granite, 'cept the old man of the mountains himself.
"But it's so unfair!" she repeats, over and over again.
I know, I know. What can this seasoned crip say to a young one just starting out, knowing that her life will be a series of "it's so unfair's" -- and that somehow, to survive, she must find her way amidst the oppression?
I have no doubt that she will do that. Over and over again I have watched this young woman fly by the seat of her pants. She may not know how to shop or use a microwave, but she knows how to sit in the rain and protest the Peter Singers of the world, knows how to write a grant to get money to talk to other crips about sexuality and queerness and disability, knows how to organize and collect smiles that were originally intended as stares.
She has accomplished much so far. She has moved out of her parents' home, made phone calls to hook up health care and social security and cable for the new apartment.
And now she sits, alone and scared, with barely enough furniture to fill a closet and sorrow enough to fill a state. I wish so much now to be able to don my supercrip cape, to have enough energy, ability, and stamina to make the one-mile trip to her home, to bring her a plant, a loaf of bread and a pair of loving arms.
Instead I listen and coo and assure, set up a time for her to come to my home, invite her into the life I have created amidst chaos and crip hating. Tonight, this phone connection will have to be enough. Given enough tomorrows, we will ensure that future young ones do not become refugees out of need for attendant services.
zzz zzzz.
New item.
The Media Edge Department.
The Christopher Reeve Ad.
By Jennifer Burnett.
Jennifer Burnett writes about media and disability issues.
The Super Bowl has a reputation for showcasing original and outrageous ads that get additional free airtime when they're discussed in news programs, talk shows -- even sitcoms. Advertisers relish those articles and discussions.
Nuveen's ad of Christopher Reeve getting out of his power chair to present an award was a digital creation meant to get viewers' attention. Which it certainly did. The Today Show and ABC Good Morning America talked about it. It got plenty of print comment too, including in the disability press. Spinal cord injury chat rooms bubbled, praising the ad for drawing attention to the need for money for research, berating Reeve for inability to accept disability. The Reeve/Nuveen ad wasn't peddling "the cure," though. It was peddling investing, or "wealth management" as Nuveen calls it. It offended New York Times advertising columnist Stuart Elliott, who called it "crass and more than a little creepy." ("If the spot were selling increased research for spinal cord injuries" it would have been "inspirational," Elliott said.)
Getting attention, of course, is the basic goal of advertising.
"Our goal is to change the way people think about wealth," said Nuveen in a press release from the Minneapolis-based Fallon McElligott ad agency, which created the ad (and whose clients have included BMW of North America, Fortune Magazine, Time Magazine, Sports Illustrated, Holiday Inn and Nordstrom's, FAO Schwarz and the Children's Defense Fund).
With an unemployment rate of over 70%, the vast majority of people with disabilities could not begin to be considered consumers of this product. But the ad was not created with the disability market in mind; its target was people with money. It unabashedly pulled at heartstrings with an in-your-face, no-holds-barred "disability is bad" message. In the tradition of Jerry Lewis, this ad meant to bring tears to the eyes of football fans during their favorite game, courtesy of the incredibly courageous former Superman.
The ad may have done more damage than Jerry himself: unlike the telethon, this "disability is bad" message aired during one of the year's most watched TV events. Nuveen paid $4 million for that minute of airtime.
Dalton Deitrich of The Miami Project to Cure Paralysis applauded the ad's "wonderful emotional appeal": "If it focuses more attention on the need for research, that would be wonderful too." But even "cure" professionals were questioning Nuveen's stunt: the ad "might raise expectations unreasonably."
Reeve was quick to downplay skepticism. "The biggest problem actually is people who have been in a chair for a very long time," he told ABC's Good Morning America -- "because in order to survive psychologically they have to accept, 'OK, I'm going to have to spend my life in a chair.'"
Chapman University's Art Blaser thinks Reeve's popularity reflects the American belief that "We can fix anything different, so we will, since difference cannot be tolerated." He also thinks it reflects cynicism: "If laws won't be implemented and some will be gutted, and if social movement activity is unpromising, then an individual cure may be the best of a bad situation."
Four days after the Super Bowl, the front page of the Harrisburg, PA Patriot News Healthy Living Section featured a "litany of celebrities who've gone public with their own afflictions" to raise public awareness, "humanize an illness" and "raise money for research." A color photo showed Reeve "walking."
But the front page that day carried a more compelling real-life story: Jennifer Wambold, paralyzed from the chest down, earning her high school diploma seven years after a diving accident. A photo showed Wambold in her power chair.
Wambold, reported the paper, lived in a nursing home. As Pennsylvania First Lady Michele Ridge gave Jennifer her diploma, did she question why Wambold lived in a nursing home? Perhaps she felt a nursing home was an appropriate place for her. Pennsylvania puts 98% of its long term care budget -- $2.7 billion a year -- into nursing homes; it ranks dead last in state spending for in-home personal assistance services.
Celebrities may dwell on the "negative" of disability and seek the cure, but people like Jennifer Wambold will not disappear. Disability is a fact of life.
To send comments on Nuveen Investments' ad featuring Christopher Reeve walking, write to:
Christopher Reeve Paralysis Foundation
500 Morris Avenue
Springfield, NJ 07081
800/225-0292
Tim Schwertfeger
CEO
Nuveen Investments
333 W. Wacker Drive
Chicago, IL 60606
800/257-8787
312/917-7700 (corporate headquarters)
David Lubars
Creative Director
Fallon McElligott
901 Marquette Avenue
Minneapolis, MN 55402
612/321-2533
(fax) 612/321-2346
www.fallon.com
zzz zzzz.
New item.
Sidebar:
Time Magazine has virtually never carried the disability perspective. Stories have focused on caregivers; abuse by "aides"; the inspirational or the heroic.
Opening the Feb. 14 Time to Charles Krauthammer's back-page "Restoration, Reality and Christopher Reeve" essay, in which the well-known neoconservative pundit argued the fallacy of Reeve's "cure" fantasy, was encouraging.
Krauthammer wrote that he had been in a wheelchair from a spinal injury since age 22. "For 28 years I've been hearing that a cure is just a few years away. Being a doctor, I have discounted such nonsense." A medical expert -- a disabled one, no less -- was preaching the right message in a national newsweekly.
Maybe Krauthammer didn't get it completely right, but his authoritative spin on the potentially devastating impact of Reeve's message on newly disabled people was a major media inroad.
End of sidebar.
Some quotes:
"These kids should be . . . preparing themselves for the opportunities in the new world that high technology has for the first time in history made possible for the disabled . . . "
Charles Krauthammer, "Restoration, Reality and Christopher Reeve"
Time Magazine Feb 14, 2000
The opportunities in this new world for people with disabilities have not been created by technology alone. They are the result of several generations of intensifying disability rights activism that has won passage of laws protecting us from discrimination and guaranteeing us access. . . . We need to ask why society keeps giving Reeve platforms to propagate his views but excludes the disability rights perspective
Paul Longmore
If I had pulled a Christopher Reeve 30 years ago, none of at least 1,000 buildings would be accessible today.
Tom Deniston,
Accessible Design Associates
Walking or not walking, Reeve is Reeve, as his aptly titled autobiography, "Still Me," tries to say. That rhetoric is belied by his actions, though, which only convince the world that until he can walk again he is not "still me."
Steve Brown,
Institute for Disability Culture
Maybe the "cure" can be discovered sooner because of Reeve's contributions. But let everyone see how he did it: He did it in his wheelchair.
Gary Ray Rogers
"In Reeve's view, reality is a psychological crutch. His propaganda to that effect undermines those -- particularly the young and newly injured -- who are struggling to face reality, master it and make a life for themselves from their wheelchairs."
Charles Krauthammer, "Restoration, Reality and Christopher Reeve"
Time Magazine Feb 14, 2000
The problem, Krauthammer said, is not that "people in wheelchairs don't dream enough about getting out of them" but that some newly disabled people "dream about it too much" and never get on with their lives.
"If I am wrong, the worst that can happen is that when the miracle comes, the nonbelievers will find themselves overtrained and overtoughened," wrote Krauthammer. "But if Reeve is wrong, what will his dreamers be left with?"
zzz zzzz.
New item.
Poems with Disabilities
I'm sorry -- this space is reserved
for poems with disabilities. I know
it's one of the best spaces in the book,
but the Poems with Disabilities Act
requires us to make all reasonable
accommodations for poems that aren't
normal. There is a nice space just
a few pages over -- in fact (don't
tell anyone) I think it's better
than this one, I myself prefer it.
Actually I don't see any of those
poems right now myself, but you never know
when one might show up, so we have to keep
this space open. You can't always tell
just from looking at them, either. Sometimes
they'll look just like a regular poem
when they roll in -- you're reading along
and suddenly everything
changes, the world tilts
a little, angle of vision
jumps, focus
shifts. You remember
your aunt died of cancer at just your age
and maybe yesterday's twinge means
something after all. Your sloppy,
fragile heart beats
a little faster
and then you know.
You just know.
And the poem
is right
where it
belongs.
Jim Ferris
zzz zzzz.
New item.
Ragged Edge Magazine (formerly the Disability Rag and Resource) is published by The Advocado Press, Incorporated, a non-profit small press in Louisville, Kentucky.
Our ISSN number is 1095-3949.
Editor: Mary Johnson.
Poetry/Fiction Editor: Anne Finger.
Design/Production: Cliffwood Organic Studio.
Our mail address is:
P. O. Box 145, Louisville, KY 40201.
Copyright 2000 by The Advocado Press. Reproduction without permission of any material herein is strictly prohibited.
Rate for individual subscriptions: $17.50/year; organizational rate, $35.00; international rate, $42.00. To subscribe, send check in U. S. funds to P. O. Box 145, Louisville, KY 40201.
Published by The Advocado Press, Incorporated:
Send all correspondence and submissions to: P. O. Box 145, Louisville, KY 40201. Our e-mail address is EDGEMAG@AOL.COM. Letters received will be assumed to be for publication unless explicitly stated otherwise. Ragged Edge magazine reserves the right to edit submissions. Material submitted can't be acknowledged without a stamped self-addressed envelope. Electric Edge, the on-line edition of Ragged Edge magazine, is at: HTTP://WWW.raggededgemagazine.com. Note to blind readers accessing this URL by sound. it is WWW Ragged dash Edge dash Mag dot com.