Your quick, once-a-day look at disability rights,
and the movement toward full community inclusion around the world.
Monday, October 20, 2003
Year IV, Edition 162
This front page features 8 news and information items,
each preceded by a number (#) symbol.
Click on the"Below the Fold" link at the bottom of this page for 39 other news items.
QUOTES OF THE DAY:
"Terri Schiavo's death sentence should alarm all people with disabilities and our allies . . . The implication is that people whose brain function and communication abilities are impaired do not deserve the same legal protection as other people."
--Disability rights activist Laura Hershey in a plea for the disability community to ask Florida Governor Jeb Bush to intervene to stop the starvation death of Terri Schiavo (First story)
"He saved my life."
--Kyle Simpson, 14, who was saved from a 1998 house fire by his adoptive brother Zack Brock (Second story)
# ADVOCACY / FAMILIES
Florida House Gives Gov. Bush Power To Intervene In Schiavo Case; Advocates Rally At White House, Hospice
By Dave Reynolds, Inclusion Daily Express
October 20, 2003
TAMPA, FLORIDA--Late Monday night, the Florida House passed a bill giving Governor Jeb Bush the power to order Terri Schiavo's feeding tube reinstalled so she will not starve to death.
The bill, which was approved by a 63-23 vote, is expected to be passed by the state Senate on Tuesday.
Bush called the special session to vote on the measure, which is very specific to Terri's situation. The measure would give the governor 15 days to order a feeding tube reinserted in cases where a person has left no living will, is in a "persistent vegetative state", has had nutrition and hydration tubes removed, and where at least one family member has challenged that removal. It also specifies that the feeding tube must have been removed as of October 15 -- the day Terri's tube was pulled by court order.
Doctors say Terri will likely survive 7 to 14 days from when the feeding tube was taken out.
Earlier Monday, Florida's Advocacy Center for Persons with Disabilities asked U.S. District Judge Steven Merryday in Tampa to keep Terri alive long enough to investigate a claim that her husband has been abusing her.
Attorney Gordon Scott asked the federal judge to issue a 10-day injunction to give the advocacy agency time to investigate whether removing Terri's feeding tube was an act of abuse, and whether Terri can feel pain from her starvation and dehydration.
Terri, 39, collapsed in February 1990 from a chemical imbalance and was without oxygen for several minutes. Some doctors have said she is in a "persistent vegetative state", that she does not feel pain, and that she cannot recover. Terri does breathe on her own, and regulates her own blood pressure. Up until last Wednesday, she was being given food and water through a tube installed in her stomach.
Terri's husband and guardian, Michael Schiavo, claims his wife told him she would not have wanted to live "by artificial means", and in 1998 petitioned the court for permission to have the feeding tube removed. The courts have consistently sided with Mr. Schiavo.
Terri's parents, Bob and Mary Schindler, have fought since that time to keep their daughter alive. They have affidavits from several medical professionals who claim that Terri could benefit from therapies -- including speech and swallowing therapies -- which her husband has repeatedly refused. Video tapes also show Terri apparently interacting with family members, laughing and following basic directions less than two years ago.
The Schindlers accuse their son-in-law of abusing and neglecting Terri, and suspect him in bringing about her initial collapse.
Disability rights advocates from around the country have been closely watching Terri's case, and have been acting to let their concerns be known. Emails have flooded into the governor's office. A vigil, including many right-to-life advocates, has been going on non-stop since last Monday in front of the hospice that has been Terri's home for the past several years.
A group of about 30 activists rallied in front of the White House Sunday afternoon, demanding President George Bush call on his brother, Gov. Jeb Bush, to intervene to keep Terri alive. Demonstrators, who were organized with less than 24-hour notice, marched with signs reading "Disability is not a capital crime" and "Gov. Bush -- Stay Terri's Execution".
"Terri Schiavo's death sentence should alarm all people with disabilities and our allies," wrote disability rights activist Laura Hershey in a plea for the disability community to contact Gov. Bush. "The implication is that people whose brain function and communication abilities are impaired do not deserve the same legal protection as other people."
"This is not a right to die case or a right to live case, it's a forced to die case," said Diane Coleman founder of the disability rights group Not Dead Yet. "Many have been shocked that legal protections for older and disabled people in guardianship have been so weakened that a 39 year-old woman, who is neither unconscious nor terminally ill, can be starved to death."
"If this case goes forward as it has been, [guardians] will be given carte blanche to kill people with disabilities that they would rather be without," said Coleman. "We must have checks and balances on the powers of guardians, and those have been eroded here in Florida."
The Schindlers visited Terri on Saturday with their priest.
"She's got an incredible will to live,'' said her brother, Robert Schindler Jr.
The family priest, Monsignor Thaddeus Malinowski, was not allowed to administer the rite of Viaticum, the last communion for a Catholic before death, because it involved placing a small wafer into Terri's mouth -- an act that would have violated a doctor's order that nothing be placed in her mouth to prevent choking and aspiration.
"State House gives Bush power to intervene in Schiavo coma case" (Associated Press via Sun Sentinel)
What if Terri Schiavo was a dog? (World Net Daily)
"FIRST-PERSON: The Terri Schiavo case: Death stalks the innocent" (SBC Baptist Press)
"Brain-Damaged Fla. Woman Denied Communion" (Associated Press via Lakeland Ledger)
"Terri Schiavo's Right To Live" (Inclusion Daily Express)
Terri Schindler Schiavo Foundation
# CONTRIBUTION / FAMILIES
Teen Saluted For Saving Lives
October 20, 2003
HOWELL, MICHIGAN--A deadly house fire claimed the lives of three children in 1998.
But the tragedy could have been much worse if not for the quick thinking of Zack Brock, who was 11 years old at the time.
Zack, who has been diagnosed with fetal alcohol syndrome and a number of other disabilities, was living with the single mother who had adopted eight children and was a foster mother to another.
When he first saw the flames, he went throughout the house telling the other children to leave. As he followed many of them out, he noticed that several were still inside. Zack went back inside and rescued his 5-year-old sister. He returned for the three that remained, but the smoke was too thick.
This past Friday afternoon, the Howell Area Fire Department gave Zack, now 15, a special citation for his part in saving the lives of his adoptive siblings.
"Without your action, this tragedy could have become more severe," Fire Chief Jim Reed told Zack.
One of those on hand was Kyle Simpson, 14, Zack's adoptive brother was in the house at the time of the fire.
"He saved my life," Kyle told the Detroit Free Press.
"One Boy's Bravery: As flames filled his home, a child with special needs saved lives" (Detroit Free Press)
# ACCESSIBILITY / ADVOCACY
Cobblestones And Accessibility Don't Mix, Says Columnist
October 20, 2003
TORONTO, ONTARIO--The following six paragraphs are excerpts from a column by Helen Henderson in Saturday's Toronto Star:
Not cobblestones. Tumblestones.
That's what architect Michael Kirkland, consultant to the Toronto Waterfront Revitalization Corp., says he meant this summer when he unveiled drawings for the first steps in a proposed 30-year, $17 billion plan to revitalize Toronto's waterfront.
At the unveiling, Kirkland talked about using cobblestone walkways, graceful lines of trees and stylish benches to bestow on Toronto a touch of Parisian elegance. He also talked about creating a vibrant, accessible community where people can live, work and play.
The reaction was a flood of e-mails pointing out that cobblestones and a vibrant, inclusive environment are mutually exclusive.
As many readers of this column noted with alarm: No matter how quaint cobblestones look in artists' renderings, they present an unnecessary hazard.
For kids in strollers and people who use wheelchairs, every stone delivers a jolt that can shift fragile bodies into dangerous and painful positions. Wheels get caught.
"Waterfront plan on better footing" (Toronto Star)
# COMMUNITY LIVING / CONTRIBUTION
Neighbors Gather To Clean Up Community
October 20, 2003
DULUTH, MINNESOTA--"I like to help the city to keep the parks clean."
That's why Barbara Carlson and several dozen other people with disabilities gathered Sunday with bright yellow trash bags at Lester Park.
"Somebody has to do it," Carlson told the Duluth News Tribune.
The second annual event combined the efforts of the Association of Residential Resources in Minnesota, a coalition of 130 providers of residential supports.
"I think the fresh air will do me good," said Jane Trimble, who helped bag trash from the seat of her wheelchair. "It's good exercise."
"Making a clean sweep" (Duluth News Tribune)
# LAWS / HEALTH CARE
Neurologist Over-Diagnosed And Over-Prescribed; Hundreds Of Parents Pursue Legal Action
October 20, 2003
LEICESTER, ENGLAND--Dr. Andrew Holton, 51, worked as a neurology consultant at the Leicester Royal Infirmary for 11 years beginning in 1990.
Holton was suspended in May 2001 following complaints from parents and community pediatricians about his rude behavior and high rate of epilepsy diagnoses.
An internal hospital investigation later found Holton had misdiagnosed epilepsy in 618 of 1,948 children he had treated, and had improperly prescribed high doses of epilepsy medications for 500 children.
A just-completed investigation by the Department of Health has revealed complaints and concerns about Holton that date back to 1995, and found that he often prescribed up to five anti-convulsant drugs at a time.
About 400 parents have started legal action against the University Hospitals of Leicester NHS Trust. The suits could cost the NHS an estimated £10 million ($16.7 million US).
Dr Holton will remain an employee of the trust until next month. The neurologist has already started retraining in another specialty outside Leicestershire.
# TODAY'S FEATURED WEBSITE
Disability Travel and Recreation Resources
# EXPRESS EXTRA!!! From the Inclusion Daily Express archives -- Two years ago:
ACCESSIBILITY / SAFETY
Escape Plans Are A Must
October 19, 2001
ALBUQUERQUE, NEW MEXICO--The events of September 11 should be a wake-up call for building supervisors, business managers, and people with disabilities according to columnist Barbara McKee.
"Disabled Americans must teach others how to save us, and teach ourselves," wrote McKee in the Detroit Free Press. "Many of us have no idea that it's our responsibility to case the building to ensure our safety."
"How many of us ask for the disabled escape plan at our jobs?"
"In multistory buildings, disabled individuals truly put their lives in danger if there isn't a well-developed escape plan."
McKee hopes that the tragic attacks last month will bring more attention to the need for practical evacuation plans, and will cause people with disabilities to take more responsibility for being sure the buildings where they work and visit have a way out in case of an emergency.
"Don't leave disabled behind" by Barbara McKee (Detroit Free Press)
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Dave Reynolds, Editor