From the New York Times:

Activists like writer/blogger Liz Spikol (left) and USC law professor Elyn Saks are speaking candidly and publicly about living lives with mental illness, promoting awareness and acceptance of people with such diagnoses as bipolar disorder and schizophrenia.

“Until now, the acceptance of mental illness has pretty much stopped at depression,” said Charles Barber, a lecturer in psychiatry at the Yale School of Medicine. “But a newer generation, fueled by the Internet and other sophisticated delivery systems, is saying, ‘We deserve to be heard, too.’ ”

About 5.7 million Americans over 18 have bipolar disorder, which is classified as a mood disorder, according to the National Institute of Mental Health. Another 2.4 million have schizophrenia, which is considered a thought disorder. The small slice of this disparate population who have chosen to share their experiences with the public liken their efforts to those of the gay-rights and similar movements of a generation ago.

Just as gay-rights activists reclaimed the word queer as a badge of honor rather than a slur, these advocates proudly call themselves mad; they say their conditions do not preclude them from productive lives.

From the Seattle Times:

Wil Kerner (left) builds elaborate and expressive artwork using construction paper and scissors.

What the autistic 12-year-old can’t express verbally or in social interaction he can show through his carefully cut out geometric shapes assembled into characters in a paper collage, a talent the staff at Seattle’s Harborview Medical Center calls a rare artistic gift. Large red circles become heads, delicate strips of fringed white paper become hair, and finely cut arches are shaped into eyebrows.

The art — and the artist — intrigues those who study autism. Dr. Stephen Dager, interim director of the University of Washington’s Autism Center, who has been studying brain anatomy and chemistry in autism, is mystified by Wil’s artistic talents. Autistic people generally pay little attention to eyes during social interaction, studies show, and usually are unaware of others’ emotions. Yet, Wil has the ability to mimic human emotion through his art.

From the Associated Press:

Alaska governor Sarah Palin says she was initially “shocked” upon getting the prenatal diagnosis of Down syndrome for her fifth child when she was four months pregnant. But she and her husband Todd (with baby Trig, left) never considered terminating the pregnancy

Once her husband got the news, he told her: “We shouldn’t be asking, ‘Why us?’ We should be saying, ‘Well, why not us?’”

… “We’ve both been very vocal about being pro-life,” Palin said. “We understand that every innocent life has wonderful potential.”

… “I’m looking at him right now, and I see perfection,” Palin said. “Yeah, he has an extra chromosome. I keep thinking, in our world, what is normal and what is perfect?”

Trig Paxon Van Palin was born on April 18, and Palin went back to work three days later. Her implicit message: that a child with special needs would not hinder her professional commitments.

“There is no reason to believe a woman can’t do it with a growing family,” she said. “My baby will not be at all or in any sense neglected.”

Aging caregivers have limited options for support, housing

From the Wall Street Journal, a story about the impending crisis of care for adults with intellectual disabilities who live with aging caregivers. The piece leads with the story of 41-year-old Kent Dromgoole, a Texas man with Down syndrome who had been living with his 79-year-old mother. But his mother went into respiratory arrest, and he now has nowhere to go and no one to care for him. His lifeline now is Beth Lambdin, the clinical liaison for the Plano Specialty Hospital (above).

“I’m his one constant,” she says. “I’m really no one, just a stranger who met them three weeks ago.”

That Ms. Lambdin, an acquaintance of less than a month, may end up housing Mr. Dromgoole speaks to her character. But it also underscores the limitations of the nation’s programs to assist those with developmental disabilities, especially in emergencies, which promise to hit more often as the nation’s caregivers grow increasingly frail.

“We have not addressed the needs of aging caregivers,” says Susan Murphree of Advocacy Inc., a federally funded protection and advocacy system for Texans with disabilities. “One of the things we don’t have is help for people in crisis situations.”

An estimated 2.9 million people with intellectual or developmental disabilities or some significant functional limitation live with caregivers — mainly parents — who are 55 years or older.

Part 2 of a series

Reporter Erika Schultz, writing in the Seattle Times, documents the lives of 65-year-old Ron Johnson and his 41-year-old son Ronny, who has autism and is nonverbal. Ron had been managing as the sole caregiver for Ronny and was determined to do so indefinitely, but emergency heart surgery intervened.

Ron’s health emergency pushed Ronny to the top of the waiting list for state-provided care, and so he’s now able to live in a group home. But Ron’s not sure the placement is a good solution for his son — or for himself.

This story is part of a Times series on people with intellectual disabilities who outlive their caregivers. See earlier post here: For adults with intellectual disabilities, an uncertain future.

Writing in National Public Radio’s “This I Believe” series, Donald Rosenstein explains how his family has adapted and grown, thanks to his son Koby’s diagnosis of autism.

That Koby has autism is old news at this point. We’ve grieved, survived and adapted. We’ve learned to be more patient, to celebrate more modest victories, and to connect with Koby whenever and however we can. Now, when Koby flaps, I’m happy for him and what it means about his engagement, not sickened by what it might mean for his and our futures.

… I believe that “reframing a problem” can help to overcome it. But adaptation is not the same as becoming tolerant of or inured to something. Adaptation allows for creative possibilities. Koby has adapted to us and we to him, and through this process our family has discovered deep and meaningful connections with each other — connections we never thought possible.

Dr. Donald Rosenstein is the clinical director of the National Institute of Mental Health, specializing in psychiatric care of the medically ill.

Earlier post here.

From the Seattle Times, the first of a two-part series on the changing needs of adults with developmental disabilities. For years, their parents have cared for them, saving the government untold millions of dollars. But what will happen when their caregivers can’t do it any longer? And who will pay?

James Jensen, 47, is part of the first generation of people with developmental disabilities likely to outlive their parents in great numbers. His parents are in their early 80s, and are showing signs of slowing down. James, who has Down syndrome, has always lived with them. His mother, Delores, says he is a blessing.

When James was small, families routinely sent their children with Down syndrome to institutions — as Delores Jensen was urged to do with her son. Nowadays institutionalization is rare, but the state has not planned or funded services to take care of people like James after their families are unable to do so.

Delores’ plan, a friend concludes, is to live forever.

Related stories from the Seattle Times:

• Change in social attitudes helps lengthen lives
• Providing for future poses extra challenges
• Services in short supply
• People with Down syndrome are living longer
• Where to get help