December 25th Happy Birthday

Birthdays of many noteworthy people are celebrated on December 25,^th including scientist Isaac Newton, actor Humphrey Bogart and musician Kid Ory.  Though Jesus of Nazareth’s year of birth is believed by biblical scholars to have been January 6, 361 AD, his birthday has been celebrated on January 25^th since the 5^th century AD when Pope Leo I officially inaugurated the practice.

 Another Jewish child was born on December 25^th, less famous, but important to some of us, nonetheless. Anna (Anneke) Bianca Kohnke was born on December 25, 1941 in Hilversum, the Netherlands.

Leni and Day-Old Anneke

 Nearly 30 years later Anneke became my wife. As readers of this blog will know, her parents were killed in Auschwitz, Poland September 21, 1943.  When blonde-haired blue-eyed Anneke with her “Dutch Boy” haircut arrived at 1900 Riverside Drive in New York July 16, 1946, her little friends in the building where she lived, most of whom were Jewish with dark hair and brown eyes, decided among themselves that she must have been a gift from Jesus, because of her appearance and her birth on December 25th.

Anneke's Passport Photo 1946

 She was 5-1/2 years old and extremely thin and had bruising from severe malnutrition during the Dutch Hongerwinter of 1944-5, during which so many Dutch people died of starvation. She was suffering from Rickets. During her first months in America, Anneke’s aunt Greta Herzfeld Leyens, got up in the middle of the night to prepare complete meals for the ravenous little girl who awakened crying of hunger.  Fortunately she is unable to remember any of that.

 \Sixty-five years ago, Wednesday, December 25^th 1946 Anneke experienced her first Christmas in America.  The New Yorker that week featured a cover painting of a traditional snowy Christmas scene with a family arriving at Grandma’s house.  She and Greta would have listened to “Winter Wonderland” by Perry Como on their wooden table-top radio while preparing holiday cookies.  The New York Times carried a story that day, that the mysterious GI, “Kilroy” who scrawled his name on walls all over Europe during WWII was a real person, James J. Kilroy, a factory worker in Quincy MA who wrote his name on machined items he inspected, “Kilroy was here,” which apparently was how the tradition began. 

 It would be the first Christmas since she was 18 months old that Anneke would have a family.  On Christmas 1946, her birthday, there would have been few gifts, unlike today, and since the family was Jewish, no Christmas tree or lavish giving of presents was part of the tradition. The event was really about enjoyment of family. She would have received a doll and a book, and perhaps a toy from Uncle Erich.  Like most other Americans, they almost certainly listened to President Harry Truman’s Christmas greeting broadcasted via radio, asking Americans to “strive with undaunted faith and courage to achieve in the present some measure of that unity with which the Nation’s sons and the sons of our allies went forth to win the war,” after the National Community Christmas Tree celebration.

1947 Christmas Card

 In the afternoon of Christmas day, Anneke, and her little friends, Joan and Carol Singer would have gone outdoors to play until their mother’s called them for dinner. Christmas day was clear and breezy, a few degrees above freezing temperature, great weather for games in Fort Tryon Park.  Anneke had dinner with her uncle Erich, whom she called “Daddy,” and her aunt Greta, “Mummy.”  If Anneke’s aunt Greta was like other recent immigrants, she most likely prepared a traditional German Christmas dinner, chicken soup with spaetzle, roast goose with apple sauce, Brussels-sprouts, creamed potatoes, freshly browned butter buns and pie.  Greta likely prepared a scrumptious plum pudding she had learned to make while an immigrant in England during the early years of the War. It’s also very likely Greta or her friend Eva Singer also made Lebkuchen, delicious Christmas cookies for a treat with milk or coffee in the evening. After dinner they would have retreated to the small living room of their apartment in Inwood, and listened to ABC Philco Radio Time with Skitch Henderson and the Charioteers, and Great Gildersleeve comedy show, and tried to understand the broad humor of their new homeland.

That Christmas evening when Anneke went to bed, she would have taken her new doll to bed with her and fallen asleep without diving for cover when a car backfired out doors, reminding her of bombing not far from their house in Voorburg, Netherlands where she had been hidden. It was a time to appreciate that her hunger and protracted fear for her life, were actually over and a new life had really begun with her very own family.

Promoting Democracy in the U.S.: Seeking Support of the United Nations

The official position of the United States government over the past three administrations has been to promote democracy throughout the world.  The US has ratified the Universal Declaration of Human Rights and the International Covenant on Civil and Political Rights. 

Article 21 of the Universal Declaration of Human Rights states:

(1) Everyone has the right to take part in the government of his country, directly or through freely chosen representatives.

2) Everyone has the right of equal access to public service in his country.

(3) The will of the people shall be the basis of the authority of government; this will shall be expressed in periodic and genuine elections which shall be by universal and equal suffrage and shall be held by secret vote or by equivalent free voting procedures.

It is commendable the US government advocates for these Universal Human Rights in Cuba, Russia, Egypt, Libya, Syria and Iran, but it would be even better, if our government also advocated for the same principles within our own country.

• Michigan Gov. Rick Snyder’s Local Government and School District Fiscal Accountability Act declares that any city or district “in financial emergency,” as he has defined that term, appoint an emergency manager (at county, city, district or township level) and give that person the power to control budgets, sell off assets, bypass city councils and boards of education, take over school systems, de-certify public unions, and even to dissolve the city itself as an entity. It explicit vacates democratically elected governments, essentially amounting to voter disenfranchisement.  While we are accustomed to such events in former totalitarian states and developing countries, such a flagrant attack on democracy in the US is shocking and the American Administration has been stunningly silent. 

Article 25 states, “Every citizen shall have the right and the opportunity, without any of the distinctions mentioned in article 2 and without unreasonable restrictions:

• To take part in the conduct of public affairs, directly or through freely chosen representatives;

• To vote and to be elected at genuine periodic elections which shall be by universal and equal suffrage and shall be held by secret ballot, guaranteeing the free expression of the will of the electors; To have access, on general terms of equality, to public service in his country.”

Under Rick Synder’s Emergency Manager Law, future public elections will be controlled by Republican partisans he appoints to regulate access to voting.  There is every indication access to voting will be dramatically restricted for racial minorities, elderly citizens, college students, and people with disabilities.  As a consequence, the resulting vote counts will not represent the will of the people.

The United States Constitution, 14^th Amendment states, “1. All persons born or naturalized in the United States, and subject to the jurisdiction thereof, are citizens of the United States and of the State wherein they reside. No State shall make or enforce any law which shall abridge the privileges or immunities of citizens of the United States; nor shall any State deprive any person of life, liberty, or property, without due process of law; nor deny to any person within its jurisdiction the equal protection of the laws.” The 15^th Amendment states: “1. The right of citizens of the United States to vote shall not be denied or abridged by the United States or by any State on account of race, color, or previous condition of servitude.”  The populations in the cities currently under the provisions of Snyder’s “Emergency” law or which are in line for such control, include over half of the African American United States Citizens in Michigan, the vast majority of whom are likely to vote for Barrack Obama.

Scott Walker, the Governor of Wisconsin and his radical supporters in the legislature have pushed through a law that violates other provisions of the Universal Declaration of Human Rights, claiming that any group of four or more Wisconsin citizens who are inside the state capitol building must have a permit from Walker to be there and to petition their elected officials.

Article 21 Universal Declaration of Human Rights   The right of peaceful assembly shall be recognized. No restrictions may be placed on the exercise of this right other than those imposed in conformity with the law and which are necessary in a democratic society in the interests of national security or public safety, public order, the protection of public health or morals or the protection of the rights and freedoms of others.

Walker claims four veterans, parents of children with disabilities, business lobbyists or school teachers who come to see their state legislators about a legislative issue, must have his permission to do so, on the grounds that they represent a risk to public safety, public order or protection of the morals of the citizens of Wisconsin!

The First Amendment to the US Constitution states: “Congress shall make no law respecting an establishment of religion, or prohibiting the free exercise thereof; or abridging the freedom of speech, or of the press; or the right of the people peaceably to assemble, and to petition the Government for a redress of grievances.”

Article 22 Universal Declaration of Human Rights:  Everyone shall have the right to freedom of association with others, including the right to form and join trade unions for the protection of his interests.

Scott Walker, Rick Snyder and Governor Kasich in Ohio and their cronies in their respective legislatures passed laws seriously restricting public trade unions, clearly in violation of these very basic principles.

 Why are President Obama and Attorney General Holder silent on these critically important attacks contravening the US Constitution & Universal Declaration of Human Rights?   Where is their leadership at this critical juncture in our nation? Their silence is deafening.

Assistance from the President of the United Nations Human Rights Council, the Honorable Laura Dupuy Lasserre, is hereby being sought to investigate and take necessary action to intervene in the growing anti-democratic actions in the United States of America that are undermining our democracy. Such an investigation should have full support of US Ambassador Susan Rice, since our own government is failing to fulfill its obligations.

Wizlawa Szymborska: A Treasure for Our Times

Every now and again one happens onto a wonderful artistic find, like the first time I heard Ellington’s Across the Track Blues, originally recorded in 1940, or Rembrandt’s self portrait at the National Portrait Museum in the Hague, which I had the good fortune to see a second time last Fall.

 

In the world of literature, one of those finds that has made a lasting impression for me was Wislawa Szymborska’s poem. Life While You Wait,

Life While-You-Wait.

Performance without rehearsal.

Body without alterations.

Head without premeditation.

I know nothing of the role I play.

I only know it’s mine. I can’t exchange it.

I have to guess on the spot

just what this play’s all about.

Szymborska was awarded the Nobel Prize for Literature in 1996 for a remarkable body of work.   

Not long ago, a Dutch friend, Martine van Poeteren sent me a copy of a DVD documentary portrait of Wizlawa Szymborska, Einde en Begin (End and Beginning) by John Albert Jansen which was shown on television in Europe, but apparently not in the US.  It was produced by Oogland Filmproducties, ISM, and can be found at www.uitgeverijmarmer.nl   The video of Szymborska provides a touching portrayal of Szymborska’s wit and personal warmth as well as her intellectual depth, and deep appreciation for history, including that of her homeland, Poland.

 

 The DVD includes the Polish rocker Kora performing a knock-out rendition of Szymborska’s poem, as well as some lighter moments.  After receiving the Prize in Oslo, Szymborska is seated alongside the King of Norway at a formal state dinner in a great hall.  As a chain smoker, Symborska is anxious for a smoke, and suddenly lights a cigarette.  The entire hall is stunned at her smoking in this formal state setting.  To relieve the tension and indicate his camaraderie, the 

King lights up, a very funny scene.

Wislawa Szymborska is now 88 years old and a treasure to be cherished, now in an additional way. 

Wizlaw Szymborska poetry available on Amazon

1981- Sounds, Feelings, Thoughts Princeton University Press

1995- View with a Grain of Sand: Selected Poems, Mariner Books

1997- Nothing Twice, Wydawnictwo Literackie

2000- Poems New and Collected, Mariner Books

Autism and the World of Work

 When I first began working with people with autism professionally as a consultant at a state operated public institution in southern Minnesota in 1968, I met older staff members who spoke with fond reminiscence of the good old days, when the institution operated a basket weaving shop, a sewing establishment and a dairy farm in which residents worked.  In exchange for work, the residents were housed, provided with meals and minimal medical care, based on the poorhouse model of Victorian England (Wikipedia, 2011). In early Victorian times, poverty was seen as dishonorable caused by lack of moral virtue, i.e. industriousness.  The same pattern was used throughout the US.  People with disabilities unable to be competitively gainfully employed were viewed similarly. 

A Poorhouse in England

 In 1912 Creedmoor State Hospital opened in New York initially a farm colony of the Brooklyn State Hospital.  The "colony house" concept spread throughout the US as part of institutional agricultural development where residents raised food for consumption within the institution and also for sale outside to the surrounding communities. Examples of colony houses are Vineland in New Jersey and Howe Farm in Massachusetts. Within such colonies, men and women with developmental disabilities were kept strictly apart from the outside communities. 

Former Farm Colony Bldg at Austin State School, in Texas

But this practice didn't stop with the institutional reform movement in the 1950s.  In the late 1960s Thurman Johnson's ranch in the rolling hills near Goldthwaite Texas became a farm training and job placement service for men with intellectual disability. He taught the former state hospital residents how to raise turkeys and cows and perform other farm chores, then put them to work. He and his partner, Kenneth Henry, hired out the men as laborers at turkey processing plants in Iowa and other states.  The arrangement ended in February 2011 when Iowa authorities shut down a shabby bunkhouse where the last 21 men lived while working long hours in a nearby turkey processing plant.  They found cockroaches, boarded-up windows and exits, and a faulty boiler that forced the men to use space heaters to stay warm in the cold Iowa winter. Investigators concluded they were underpaying workers and possibly violating their civil rights. Iowa authorities notified owners that the business could face $900,000 in fines for improper payroll deductions and other alleged violations (Meyer, B, 2010).   It may come as a surprise to some, that the same type of program still exists today, but without the word “colony.” 

Food Preparation Training Beverly Farm

 I’m not suggesting all segregated residential and vocational programs are necessarily problematic.  Some residential farms seem to provide good services and a safe work environment, such as Beverly Farm in Godfrey, IL.   Frustrated parents have increasingly turned to developing their own private residential and day programs for their adult sons and daughters with autism, being dissatisfied with existing services. 

Alice G. Walton in Forbes wrote an ill-informed article about this trend in the November 30, 2011 on-line issue.  She cites Peter Bell of Autism Speaks who she says reported based on a 2009 survey,  “The unemployment rate for autistic people seems to be about 66%, compared to about 9% for the general population.”  While this is correct, it is very misleading. The comparison seems to assume that people with autism in general are comparably capable to their typical peers.  A more apt comparison is unemployment rates for people with developmental disabilities, which is the same as autism, 67%.  Some of the reasons for unemployment are similar, while others differ.

 Alice Watson states: “Part of the problem is that most educational and vocational programs for the under-21 group are state-run.” It isn’t at all clear why it is problematic that educational and vocational services are provided by public schools, unless Ms. Walton is suggested all of education should be privatized.  All of the advocates who have spent the last 30 years attempting to improve educational services for young people with autism will be shocked at this criticism.   

Many of vocational programs during high school transition are actually privately run, either as non-profit or for-profit agencies in collaboration with public schools.  Citing Peter Bell of Autism Speaks, Walton reports that he says, that a lot of times “our people are actually underemployed, either because the jobs themselves are aren’t challenging enough, and their social skills may make it difficult.”  The latter is clearly true; the former is seldom the case.  People with autism rarely have employment problems because the job isn’t challenging. This is an unproductive illusion. The problems are nearly always social, communication and other behavioral challenges.  Any employee, who have difficulty with communication, is intolerant of changes in routine or has emotional outbursts, is difficult to accommodate in many workplaces.

Ms. Walton reports in Forbes, “and some families are taking matters into their own hands. This past summer, Wendy Kaplan has started a vegetable farm in Oyster Bay, NY, cultivated by people with autism…. Kaplan now hopes to establish a permanent farm where people with autism can live, work, and be independent.”  

If this all sounds familiar, that's because it is.  We’ve heard this song before, now substituting for profit enterprises for non-profit or state operated programs.  The first place profit making companies make cuts to assure their profit margin is in employee wages and associated supervisory costs.  By definition, people with autism will generally require more supervisor costs, especially during initial transition, but they will also tend to require more ongoing guidance.  Since a for profit business’s motives are often incompatible with accommodating the needs of people with autism, the result is likely to be worse than for a non-profit or publically run organization whose priority is clearly the welfare of the client. 

Beautician Assistant Training, Autism Community, Inc,

The need for more adequate training of young adults with ASDs for the workplace is unquestioned. Partnering with the right kinds of businesses makes a great deal of sense.  It is essential in so-doing, we bear in mind the strengths and weaknesses the individual brings to the potential job situation, which vary greatly from person to person.  Common Strengths: attention to detail, reliability, conscientious, seldom tardy, 10-15% people with Asperger and HFA have normal or above normal intellectual functioning, tolerance for repetition, and good visual spatial skills. Common Weaknesses:  difficulty with frequent social interactions, resistance to following directions, communication limitations, intolerance for necessary changes, possible repetitive non-functional behavior, below average intellectual functioning for about 60-70%, and possible outbursts.  Parents and others do not do a young adult with autism any favor by only attending to the strengths and ignoring the possible limitations of the potential employee.  It is very counterproductive for parents to imagine that every person with an ASD is a budding Bill Gates.  Matching the would-be employee’s strengths with the job characteristics (including social and intellectual demands) and thorough training of job supervisors and employers, are essential in increasing the successfull employment of young adults with autism.

Finally, there are great advantages of encouraging people with autism to live and work in the community surrounded by their families or neighbors with no known disabilities with appropriate support services. An example is Community Connections Partnership in St. Paul, Minnesota, which specializes, in providing vocational and other services to individuals with autism in the community. Opportunities for normative daily activities often do not exist in segregated settings, which tends to promote isolation and non-functional repetitive routines, like hours of playing video games or rocking and watching television. While parents who establish such programs are unquestionably well intentioned, the profit-making company that runs such an organization in the future may not be so inclined, as happened with the Texas turkey farm. 

Participating in ordinary daily community activities like going shopping, visiting community events, taking part in integrated group sports, arts, music and outdoor activities are enriching for people with autism just like everyone else. Why would one choose to knowingly deny them those opportunities? It is understandable concerned parents want to protect their kids as young adults as long as possible, but this approach isn't necessary as a means of providing a valued future for their adult children with autism spectrum disorders.


In closing, the headline of Alice Walton's article, "Living Life With Autism: Has Anything Really Changed?" is patently absurd to anyone who has been involved in the autism field over the past 30 years.

References

Community Connections Partnership http://www.communityconnectionspartnership.org/

Meyer, Bill (2010) Texas farm that employed, hired out mentally disabled men for decades face more scrutiny. Cleveland Plain Dealer, Wednesday, June 10, 2009, http://www.cleveland.com/nation/index.ssf/2009/06/farm_that_employed_mentally_di.html

Poor House, http://en.wikipedia.org/wiki/Poorhouse#Poor_farm; Nov. 30, 2011 [In early Victorian times poverty was seen as a dishonorable state caused by a lack of the moral virtue of industriousness. As was depicted by Charles Dickens, a workhouse could resemble a reformatory and house children, either with families or alone, or a penal labor regime to give the poor work at manual labor and subject them to physical punishment.  In the US poor farms were county or town-run residences where paupers (mainly elderly and disabled people) were supported at public expense. They were common in the United States beginning in the middle of the 19th century and declined in use after the Social Security Act took effect in 1935 with most disappearing completely by about 1950.]

Smith, FA & Gilmore, DS. Data Note 10, 2007, Institute for Community Inclusion, Unmasks Boston. http://www.communityinclusion.org/article.php?article_id=197