Writing in the Kansas City Star, Lisa Cannady says Kansans like her son Pierce must endure years on waiting lists before they can get the government services they’re entitled to receive. An excerpt:

There is something, collectively, in us that has allowed us to ignore the most vulnerable among us. From the waiting list that thousands of Kansans with disabilities have to negotiate, to comments earlier this year by President Obama about the Special Olympics, it is clear that disabled people remained largely disenfranchised. This is the last taboo, the group that it is still acceptable to marginalize.

The ugly truth is that when the needs and rights of people with disabilities are not upheld, when indignities – the big ones and the little ones – are allowed to go unchecked, it tells this vulnerable population that they don’t deserve better. It tells them substandard care and consideration are all that special needs people are worthy of.

As the mom of a special needs child, I am not prepared to accept that as my child’s due. I am not raising my son to sit at the back of the bus.

Lisa Cannady is a social services counselor at Lakemary Center in Paola.

From the [Newark, NJ] Star-Ledger:

A haunted house at the Red Mill Museum in Clinton, NJ, has angered mental health advocates, who say  the “Asylum of Terror” theme reinforces negative stereotypes about mental illness.

Advertisements for the fictional show warn visitors that the wretched souls imprisoned in the asylum were tormented by “dementia, paranoia, violent sociopathic behaviors, physical abnormalities and deformities,” which led them to torture and murder all 200 staff members in 1942.

The National Alliance on Mental Illness issued a nationwide alert about the haunted house, saying, “It’s trick or treat time again. We don’t mind ghosts and goblins, but when ‘haunted house’ attractions become ‘insane asylums,’ featuring ‘mental patients’ as murderous ghouls, we protest.”

(Star-Ledger photo)

From ABC News (with video):

Actress Glenn Close and her sister, Jessie Close, are appearing in a national ad campaign aimed at countering stima and providing support to people with mental illness. Jessie Close has bipolar disorder.

In the ad for the nonprofit BringChange2Mind, Jessie Close wears a t-shirt that says “bipolar;” Glenn Close’s shirt says “sister.”

… “Mental illness is just part of the human condition,” the actress said on “Good Morning America,” adding that her family hopes that the sisters’ campaign will help foster a dialogue about a condition that we should “talk about as openly as cancer or diabetes.”

See also:

Mental Illness: The stigma of silence, by Glenn Close in the Huffington Post

An excerpt:

What mental health needs is more sunlight, more candor, more unashamed conversation about illnesses that affect not only individuals, but their families as well. Our society ought to understand that many people with mental illness, given the right treatment, can be full participants in our society.

(Photo from ABC News video)

From the Los Angeles Times, Washington Post, USC press release:

Elyn Saks, a USC law professor whose struggle with schizophrenia has informed her advocacy on behalf of those with mental illness, is among the 24 winners of this year’s “genius” grants from the MacArthur Foundation. Honorees receive $500,000 to be used at their discretion.

Saks, 53, kept her schizophrenia hidden while excelling academically, earning a philosophy degree from Oxford University and a law degree from Yale University. In addition to her work at the USC law school, Saks is also an adjunct professor of psychiatry at UC San Diego, where she does research about society’s rejection of the mentally ill and how high-functioning schizophrenics cope.

Saks came out of the mental health closet with her 2007 memoir, “The Center Cannot Hold: My Journey Through Madness.” The book described the night terrors she had suffered throughout her life, her earlier beliefs that she had mentally caused the deaths of thousands of people, and the often-inhumane treatment she had received at mental health facilities.

Saks said in an interview that she would use at least some of the prize money to extend her memoir by interviewing other people with schizophrenia who are doing well.

“When I’m traveling, people always say, ‘You’re unique.’ Well, I’m really not,” she said. “I would just like to tell other people’s stories as well to further give people hope and understanding.”

From Wired Magazine’s list of ’12 shocking ideas that could change the world’, this one clocks in at number 2: ‘Recruit autistics’.

Danish entrepreneur Thorkil Sonne formed an IT company that hires mostly people with autism, ferreting out software errors for companies like Microsoft and Cisco Systems. The reason: people with autism have excellent memories, strong attention to detail, and are good at following structure and routine.

One client found that Sonne’s workers were five to 10 times more precise than other contractors. “This is not cheap labor, and it’s not occupational therapy,” he says. “We simply do a better job.”

(Among the magazine’s other ‘shocking’ ideas: Legalize assisted suicide)

Related post — Essay: People with autism deserve respect from academia

Writing in the Archives of Disease in Childhood (subscription required for full text), Dr. Brian Skotko reports that the number of babies born with Down syndrome has been steadily decreasing around the world as prenatal testing and selective termination have become more widespread.

Skotko reports that a trend toward later childbearing in the United States would have been expected to cause a 34 percent increase in the number of babies born with Down syndrome between 1989 and 2005 in the absence of prenatal testing. Instead, there were 15 percent fewer such babies born, a decrease of 49 percent between expected and observed rates.

With new and more sophisticated prenatal tests expected soon, Skotko called on the medical community to address the ethical questions raised by medical technologies that allow nations to decide what forms of human genetic variation are valued. He urged the medical community to:

– Develop guidelines for delivering a diagnosis of Down syndrome;

– Assemble current and accurate information on Down syndrome, in collaboration with parent support organizations, to be distributed to prospective parents;

– Offer comprehensive training to professionals on how to deliver a non-directive prenatal diagnosis; and

– Develop curriculum to give medical, nursing and genetic counseling students a richer understanding of Down syndrome.

An excerpt:

… In its support for Down syndrome prenatal screening, has the American College of Obstetrics and Gynecology endorsed a climate in which disability discrimination could more easily flourish?

… The age is swiftly coming where not all possible technologic advances may bring welcomed change. Parents who have children with Down syndrome have already found much richness in life with an extra chromosome. Now is the time for the rest of us to discuss the ethics of our genetic futures.

Dr. Brian Skotko is a clinical genetics fellow at Children’s Hospital Boston. ADC is the journal of the Royal College of Paediatrics and Child Health. Press release from Children’s Hospital Boston here.

Full article available for purchase here.

From the Chicago Tribune, Irish Times:

Fetal Alcohol Spectrum Disorders (FASD) Awareness Day, held annually on the ninth day of the ninth month, seeks to draw attention to what many advocates call an “invisible disability.”

The date of the event emphasizes the importance of taking a 9-month pause from drinking alcohol during pregnancy.

Almost 30 years after the U.S. surgeon general began issuing warnings about alcohol-related brain disorders, advocates say the syndrome is not as well recognized as autism, epilepsy or other developmental disorders. Among the reasons, advocates say: social stigma, ambivalence about alcohol consumption during pregnancy, and lack of training for doctors.

The CDC and American College of Obstetricians and Gynecologists say no amount of alcohol can be considered safe for consumption during pregnancy.