Saturday, March 21, 2015


From Time Magazine

Saturday is World Down Syndrome Day, a day recognized each year by the United Nations to raise awareness about the genetic disease. Here are five things you need to know about Down syndrome.
1. Down syndrome is caused by an extra set of chromosome 21. Every cell in the body has 23 pairs of chromosomes, one from each parent, but Down occurs when one parent contributes extra genetic material. Older mothers have a higher chance of having a Down baby.
2. More than 400,000 people live with Down in the U.S.
3. The most common symptoms of Down include cognitive delays, low muscle tone and a small stature.
4. People with Down can lead full, independent lives. They are, however, at higher risk of developing heart, respiratory problems and certain cancers.
5. People with Down are living much longer than in the past, thanks to treatments for their health issues. While the average life expectancy in 1983 was 25 years, today it is 60 years.

Monday, January 5, 2015

Brutal Beating of Disabled and other Atrocities

The Disability and Abuse Project of Spectrum Institute provides this newsfeed.
Dr. Nora Baladerian's Top Articles (10 of 86 news articles)

1.   “Brutal Beating of Disabled, Sleeping Homeless Man in SF Was a ‘Thrill Kill' ” --- Police are calling the death of a sleeping, disabled homeless man in San Francisco's Financial District, a thrill kill. --- CBS Local --- December 4, 2014  (CALIFORNIA)
2.   “Disabled Teen Brought in Weighing about 40 Pounds” --- Police have arrested the father of a mentally disabled 15-year-old girl who authorities say was brought to a central Indiana ... --- WANE --- December 2, 2014  (INDIANA)
3.   “Suit Seeks Information about NY Disabled Abuse” --- An advocate for the disabled has sued the Cuomo administration for detailed disclosures about crimes against disabled individuals in ... --- Schenectady Gazette --- December 1, 2014  (NEW YORK)
4.   “Caregiver Who Stole $4,000 from Disabled People Who Couldn't Talk Gets 8 Months in Jail” --- A 48-year-old caregiver who stole about $4,000 from two developmentally disabled Southeast Portland residents, both of whom are in wheelchairs ... --- --- December 1, 2014  (OREGON)
5.   “Two Pennsylvania Men Get Life in Prison in Murder of Disabled Woman” --- ... on Monday after pleading guilty to charges they beat, stabbed and burned to death a mentally disabled woman one of them had befriended. --- Reuters --- December 8, 2014  (PENNSYLVANIA)
6.   “Bond Set for Teens Charged in Bullying of Special Needs Student” --- Bond was set Thursday afternoon for eight Socastee High students arrested Wednesday and charged with assaulting a 15-year-old special needs ... --- WPDE --- December 4, 2014  (SOUTH CAROLINA)
7.   “Former Austin Special Education Teacher Charged with Biting 11-year-old Student During Class” --- Austin police charged 30-year-old Samuel Haire on Thursday with a felony count of injury to a child. Officers say he bit the 11-year-old Kocurek … --- Daily Journal --- December 5, 2014  (TEXAS)
8.   “Mentally Disabled People Prey to 'Hidden Sexual Violence' ” --- Sexual assaults on mentally disabled people in Hong Kong were an increasingly common occurrence, social workers said, reflecting both the ... --- South China Morning Post --- December 7, 2014  (HONG KONG)
9.   “North Korea 'Castrates Dwarfs' and Makes Those with Disabilities 'Disappear,' Claim Defectors” --- North Korea is getting rid of its disabled population by subjecting them to chemical weapons tests and castrating them, it was claimed today. --- --- December 11, 2014  (NORTH KOREA)
10.   “Jacksonville Man Charged with False Imprisonment on Ten Disabled Adults” --- Police began investigating a “rooming house” on Agnes Street on the ... The group home- Agnes St Group Home for the Elderly- had not been ... --- WOKV --- December 1, 2014  (FLORIDA)


The other 76 stories for this week, as well as newsfeeds from prior weeks, can be found at:

Saturday, January 3, 2015

The End of Christmas

Christmas is over.

Today  marked the end of David's Christmas time back home and his return to board and care. Without a word, he said he did not want to leave.

His ready to go  backpack rested at our front door. Stealthily, he picked it up and returned it to his bedroom, asserting his intent to stay. My heart sank, as I moved it back to the departure zone and offered (again) my promise that he would come home again soon.  In a few minutes, he repeated the gesture, looking to me to see if I could possibly understand the yearning in his mind and heart to stay home.

I know this betrayal of my son too well. For many years now I have packed his bags, for a return to board and care that neither of us want. I cannot explain to him what I do not fully understand myself. But I try and on this second effort, he relented and we laid the backpack at the door again.  After awhile we left for the long, sad drive back.

There is a helplessness that David feels everyday. Choices are made for him by the guardian and caregivers. It does not matter what he wants. Or what I want. Helplessness and hopelessness consume families where professional guardians have taken control. Part of a larger socioeconomic trend called handicapitalism, guardians, care homes and vendorized "services" take power and capital from people with disabilities in the name of care.  But the underlying principle is profit.

I am grateful for the Circle of Support for David and other circles for the growing numbers of people living on the edges of American society today. Together we will work toward compassion and justice in 2015.

Wednesday, December 31, 2014

Our Moral Test

"...the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; those who are in the shadows of life; the sick, the needy and the handicapped. "
Last Speech of Hubert H. Humphrey
November 1, 1977
Washington, D.C.

Monday, December 8, 2014

More on the Death of Ethan Saylor

We recently wrote about similarities in the murders of Eric Garner and Ethan Saylor, who had Down Syndrome (DS). Garner was strangled, while Saylor suffered a crushed larynx. Following up, a more detailed discussion of Saylor's case follows. USC Professor Nick Cull wrote in Truthdig about this American tragedy: "On a Saturday night in mid-January, Saylor and his caregiver went to a Regal movie theater near his home in New Market, Md., to see “Zero Dark Thirty.” When the movie ended, the caregiver went to get her car and left Saylor outside. He re-entered the theater as if to watch the movie again and was told by the management that he had to either buy a new $10 ticket or leave. When he failed to do either, sheriff’s deputies who were moonlighting as security guards at the mall where the theater was located were called in and the confrontation escalated into a scuffle. The sheriff’s deputies restrained Saylor with handcuffs and forced him onto the floor at which point he became “unresponsive.” He was taken to a hospital where he was pronounced dead. The Frederick County Sheriff’s Office suspended the off-duty deputies involved, but reinstated them after the grand jury’s decision".

Langdon Down wrote more than a century ago about characteristics of people with DS and highlighted the trait of obstinacy. Herein I have, with love (and sometimes exasperation) recounted some my experiences with David and his stubbornness. Only last weekend we were at the movies and he was single minded about where he would sit and when he would leave. God help him if he encountered, alone, a security guard like those who killed Ethan.

Langdon Down was apparently no stranger to such encounters and advised consummate tact in relating to these impasses. In fact, David has spent his life teaching all around him about patience and tact! And he becomes prosocial and cooperative under prosocial and cooperative conditions. Imagine that! Authoritarianism is predictably counterproductive.  Saylor's response is the proof that he was confronted, probably forcefully. And escalating and unnecessary force killed him. In another similarity to Garner, a Grand Jury found no reason to charge Saylor's assailants.

Professor Cull observed, "One of the troubling things about Saylor’s case is the nagging fear that the silence is not a response to careful consideration of the available evidence but a symptom that in the last analysis in the America of 2013, people with an intellectual disability simply do not count".

Thursday, December 4, 2014


It's time for this blog to again review state sanctioned torture in the United States. Past articles have looked at atrocities in nursing homes, developmental centers, prisons  and group homes. As pointed out by many, people are victimized twice: first in the abuses against them and second in the systemic failures of courts and governments to prosecute and reform.

Last week the UN authored a wide ranging 16 page report addressing ongoing torture in America. What is torture?

"For the purposes of this Convention, the term "torture" means any
act by which severe pain or suffering, whether physical or mental, is
intentionally inflicted on a person for such purposes as obtaining from him or
a third person information or a confession, punishing him for an act he or a
third person has committed or is suspected of having committed, or
intimidating or coercing him or a third person, or for any reason based on
discrimination of any kind, when such pain or suffering is inflicted by or at
the instigation of or with the consent or acquiescence of a public official or
other person acting in an official capacity".

The report eviscerated practices of our military, prisons and police. As the world looked on, our popular press failed to carry the story that in these instances we are the "bad guys". At the circles of support our position is both historical and practical: the roots of prisons and institutions are the same kind of evil that demonizes people reduced to objects and called inmates. Elders and people with disabilities  live today (in the lie of labels) at care homes and care facilities.  They are now called clients, patients, consumers and residents-but they are inmates, who are sometimes tortured.

The current UN report identified solitary confinement and isolation, violence including sexual violence, and taser assaults. As I write, groups are writing to the UN to request consideration that the atrocities within the walls of the American care home be included in statements identifying American violations of the conventions on torture.

Eric Garner and Ethan Saylor: death by choke-hold/crushed larynx

Eric Garner and Ethan Saylor suffered similar fates: Garner was choked to death and Saylor, suffered a crushed larynx. Saylor was handcuffed and forced to the ground, but no allegation of choking was made. And similarly, no charges brought against the men who choked them: Racism and ableism in American culture.