Disabled Lawyer Offers Compelling Memoir Of Survival. Terri Dailies June 5

"Too Late To Die Young: Nearly True Tales From a Life," by Harriet McBryde Johnson.

About two years ago, Harriet Johnson appeared on the cover of The New York Times Magazine. If you saw her portrait, you probably haven't forgotten it.

A thin woman in a wheelchair leans forward, a purple shawl draping one shoulder. Johnson describes it this way in her new memoir: "The portrait has been described as beautifully disturbing, and most nondisabled people seem to see it that way. I'd prefer to call it disturbingly beautiful, but I'll take it the other way around if I must."

Johnson has an unnamed muscle-wasting disease, but don't dare say she "suffers" from it. She insists on being her own complicated person, a Southern lady, for instance, as well as a socialist, an atheist, a lawyer and a born storyteller with a wicked sense of humor.

She eschews pity and sentimentality. She supports the work of Not Dead Yet, a group of anti-euthanasia activists who demonstrated outside Terri Schiavo's Pinellas Park hospice earlier this year, dramatically sliding out of their wheelchairs and lying on the ground.

And though Johnson hates the hackneyed trope of triumph in the face of disability, she nevertheless has a string of interesting adventures. She runs for elected office. She travels to Cuba to discuss disability rights. She protests the Jerry Lewis telethon annually in her hometown of Charleston, S.C., and she bribes her friends to join her with promises of free food.

Her gripe with the telethon is its grim prognostications. When she was 30, her mother became ill, and Johnson had to accept for the first time that, contrary to all expectations, she might indeed outlive her parents. "While anyone may die young, it's not something you can count on," she writes. "You have to be prepared to survive." It's that angry, proud but utterly normal brand of survival that is at the heart of Johnson's memoir.

The most fascinating chapter is her encounter with the philosopher and animal rights activist Peter Singer. (It was this encounter that rated The New York Times Magazine cover.) Singer believes that in some cases it is morally acceptable for parents to kill severely disabled infants. Johnson disagrees, so much so that she fears even debating him would dignify his ideas as socially acceptable. Nevertheless, she meets him, travels to Princeton University to debate him and ends up with a great story about it.

The best memoirs don't necessarily tell every event in a person's life, but they do capture the voice and the emotional feel of the author. Yes, it's impossible for a nondisabled person to fully know what Johnson's life is like. But her writing is so vibrant, so interesting and so funny that you can't help but feel as if you're in her world, sitting beside her and hearing her story for yourself.

Jeb has not looked well since the day Terri died. I believe that Jeb regrets that he didn't rescue her but it's too late now. This has taken a heavy toll on Jeb. I do agree with you that there's plenty of blame to go around. The system that was supposed to protect Terri as a ward of the state was a failure from the get go. Terri was making progress initially and then therapy was halted. Then the funny business with Judge Mark Shames, and Judge Greer began.

I knew Shames before he was a judge. He's the first judge who turned Terri into less than human. This goes way back and it screams " a disabled woman's civil rights are being violated".

I'll say it again that Pinellas County is corrupt and sandy beaches and sunshine won't change that unless we root out the bad guys in power. Hopefully, the Pinellas GOP will someday be infiltrated by real republicans instead of RINOS serving as executives in the party here.

DBR, Terri's nurse from Palm Gardens Nursing Home lives by me. I didn't know until after Terri died and she mentioned it to me. I don't run around talking about Terri's Fight night and day because what happened to her was wrong but her life was sacred to me so I don't blather on and on about her in my daily life.

Know this: Terri's former nurse thought Jeb Bush was going to get Terri out of their alive. Terri's death saddened and deeply touched a lot of people. They have their own personal ties to Terri or her family and they're still hurting.

Terri Schiavo's sister speaks out on autopsy results

Terri Schiavo's sister, Suzanne Vitadamo, spoke out about her late sister's autopsy results Thursday.

She spoke to reporters in Minnesota on behalf of her parents and brother. Vitadamo said her sister was not in a persistent vegetative state, as the medical examiners report said she was.

"Our family stands by its strong belief that Terri was not in PVS, and we appreciate the many noted neurologists, including Dr. Cheshire, who saw Terri just weeks before she died who agree with our position," Vitadamo said.

Cheshire is a board-certified physician at the Mayo Clinic.

The medical examiner, Dr. Jon Thogmartin, wrote in his report that "There's nothing here again that's inconsistent with what's published for persistent vegetative state."

Vitadamo also disputed what was perhaps the biggest surprise of the report. The examiner said Terri Schiavo was blind. That finding calls into question the family's claim that Schiavo was seeing anything on well-publicized videos that appeared to show her looking at her mother and following a balloon with her eyes.

"Our attorneys and other witnesses clearly saw Terri recognize her mother and father, and treat them differently," Vitadamo said.

In a jab at Schiavo's husband and guardian, Michael Schiavo, Vitadamo said Thogmartin found no evidence of bulimia.

More than a decade ago, Michael Schiavo won a large civil judgment after suing his wife's doctors, saying they should have detected an eating disorder.

"Our family would encourage Michael Schiavo to do the right thing and return the funds paid by the innocent doctors who were sued for Terri's collapse," Vitadamo said.

Click here for the report from Bay News 9.

Press Release

Statement of the Schindler Family re: Medcal Examiner's Report

For Immediate Release – 06-16-05 2 PM (EST)

Minneapolis, MN and Seminole, FL – As you are aware; the Pinellas County IME has released his report regarding Terri. We would like to thank the IME for his time and effort in making this report. We are not challenging the findings in his report, but we would like to make a few comments publicly. We do not intend to take questions afterwards.

First, the IME’s report confirms Terri’s physical condition and disability. We all knew Terri was seriously brain-injured before the IME report. This is nothing new. The IME’s report also confirms that TERRI WAS NOT TERMINAL. THAT TERRI HAD NO LIVING WILL, THAT TERRI HAD A STRONG HEART, and THAT TERRI WAS BRUTUALLY DEHYDRATED TO DEATH.

Second, our family would encourage the media to remember that this case was allegedly about “Terri’s choice.” There is absolutely no evidence that Terri wanted to die of dehydration, or that she believed that that the level of one’s disability gives anyone the moral and legal right to end another’s life.

Third, the IME said clearly that dehydration, not her brain injury, was the cause of her death. Terri was dehydrated to death before our eyes The moral shame of what happened is not erased because of Terri’s level of disability. No one would say that “blind people” or “brain-injured” people should be put to death. That would be an irresponsible and heartless position to take. Tragically, that is what happened to Terri. As a society, it seems that we have lost our compassion for the disabled.

We asked our attorney, Mr. Gibbs, to meet with the IME prior to the press conference, to attend the IME’s press conference, and to speak to the media for our family afterward. In our opinion, some of the significant items from the IME’s report are as follows:

* Terri had a strong heart according to the IME. In addition to her strong heart, Terri also demonstrated a very strong will to live.

* Terri was not terminal. The IME said with proper care Terri would have lived at least another 10 years even in her disabled condition. Terri’s case was NOT an end-of-life case. Terri’s case was about ending a disabled person’s life.

* Terri was brain-injured. This does NOT mean that she was brain-dead. Many seem to not understand this absolutely critical distinction.

* The IME essentially ruled out bulimia and heart attack as causes for Terri’s condition. In one sense the IME’s report created as many questions as it may have answered. The major question for our family that now remains is what happened? A troubling 70-minute gap appears in the timeline on the day Terri collapsed in 1990:

o According to Michael Schiavo, Terri collapsed at 4:30 AM. Mr. Schiavo said this on Larry King Live and he also re-confirmed it to the IME during his investigation.

o 911 was called at 5:40 AM. Emergency services arrived at 5:52 AM.

o Both Bobby Schindler Jr. and the original police report gave similar descriptions as to Terri’s state – laying face first, on the floor, hands crossed and up high against her chest, making gurgling noises.

o Our family doesn’t understand what led to Terri’s collapse. Our family doesn’t understand why this major discrepancy in time is not fully understood. When a person is without blood and oxygen to their brain, 70 minutes is a terribly long time when each second counts.

* With the IME effectively ruling out bulimia, the underlying basis of the malpractice case appears to now be disproved. Our family would encourage Michael Schiavo to do the right thing and return the funds that were paid by the innocent doctors who were sued for Terri’s collapse. In addition to returning the funds to the doctors who were sued, we would also ask Michael to bring closure to Terri’s death for our family by allowing us to give her a proper Christian burial as required by our faith. To this day, we have no idea where Terri’s ashes are. That is particularly hard on our mother.

* The IME’s report stated that Terri’s inability to swallow was the result of muscle atrophy. Terry was denied therapy for 12 years, and muscles atrophy when they are not used. We will never know if therapy would have helped.

* The IME clearly stated that PVS is a clinical diagnosis made on a living patient. That is something an IME cannot do by looking at a corpse.

o Dr. William Cheshire, a neurologist from the Mayo Clinic, agreed with our family’s perception that Terri was awake, aware, and at least minimally cognitive.

o We knew that Terri was visually impaired, but we did not know to what extent. Our attorneys and other witnesses clearly saw Terri recognize her mother and father and treat them differently. According to the IME’s report, it appears that after her severe dehydration, Terri was blind at the moment of her death.

* The IME stated that no conclusive medical studies have been done on what a MCS brain should look like as opposed to a PVS brain in an autopsy.

* According to the IME, Terri was given morphine for pain as she died. This seems contradictory that if Terri could feel no pain, as some would say, why would these drugs be necessary? In our opinion, the treating health care officials understood that Terri felt pain.

I would like to restate a few words from our family’s statement to Terri that we issued on March 31, 2005, the date of Terri’s death:

“Our prayer at this time is that our Nation will remember the plight of persons with disabilities and commit within our hearts to defend their lives and their dignity for many generations to come.”

In closing, the love, prayers, and concern for our family from so many around the nation are deeply appreciated. God has sustained us through these most difficult days, and we do hope that no other family ever has to live though the nightmare that our family and Terri endured. No mother and father should have to watch their child that they love more than life itself, be dehydrated and starved before their eyes. Civilized societies should not tolerate such barbaric acts.

Our family stands by its strong belief that Terri was not in PVS, and we appreciate the many noted neurologists, including Dr. Cheshire who saw Terri just weeks before she died, who agree with our position. We also thank the brave men and women in public office in Florida and Washington, D.C. who nobly stood on the side of life regardless of one’s disability. While their valiant efforts were not able to ultimately save Terri, our family is forever grateful to them for their compassion and for their conviction to do the right thing.

http://www.terrisfight.org/

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