Sacramento Bee columnist Anita Creamer profiles Heather Haskin, a mother who organized a nonprofit organization dedicated to raising public awareness about Down syndrome after the birth of her son Malachi.

Friends who were pregnant began avoiding her, she says, as if Down syndrome were a contagious disease. Another woman told Haskin that she’d terminate her pregnancy if she learned that she was carrying a Down syndrome child.

“I’m holding my son in my arms, and to my face, she’s telling me that my son’s life is worth nothing,” says Haskin. “I get really emotional about this. I feel so passionate about my son and about the other families we’ve met.

“It tears me apart when people make horrible comments.”

Read more here.

Toronto Star columnist Helen Henderson writes a weekly column about people with disabilities. She’s the subject of an engaging profile by Susan M LoTempio, assistant managing editor of the Buffalo News, for the website of the Poynter Institute, a school for journalists.

While few columns on disability exist in the U.S. media, Henderson isn’t the first columnist to write about the issues at the Star. And she’s not afraid to let loose when she sees something she regards as an injustice.

… [she wrote] a series of columns in the ’90s about the high-profile case of a 12-year-old child with a disability who was killed by her father. Henderson received hate mail from people who felt the father was justified because of what his supporters labeled as the overwhelming problems of raising a child with a disability. Someone even mailed Henderson the photo that accompanies her column with her eyes burned out.

Public sympathy was with the father, Henderson recalled. It was not with her position that no one has the right to end the life of a child.

The biggest problem Henderson sees with media coverage of people with disabilities? It’s “… how patronizing [media] are,” she said. “Too often they treat people with disabilities as objects of pity.”

Some of Henderson’s columns can be found here.

And while we’re on the subject, this might be a good time to plug a memorable column by LoTempio that ran in the New York Times a couple of years ago. LoTempio tried to attended a concert by Paul McCartney at Madison Square Garden. She found that her “accessible” seat provided her with an excellent view of gyrating backsides, but not of Sir Paul. Read her expression of outrage over the $278 ticket to bias. Registration and payment required (but hey, it’s worth it.)

We just got word of this upcoming book from Baylor Press, written by a scholar who is also the sibling of a man with Down syndrome.

It’s called “Theology and Down Syndrome: Reimagining Disability in Late Modernity.”

From the publisher’s blurbs:

“Yong has done nothing less than provide the most comprehensive analysis we have of the philosophical issues surrounding Down syndrome. But more importantly, drawing on an account of the Holy Spirit, he helps us better appreciate how focusing on disability makes us re-think fundamental theological categories…. ”
— Stanley Hauerwas, Gilbert T. Rowe Professor of Theological Ethics at Duke Divinity School

This work is also noteworthy for its focus on Down Syndrome and how people with Down Syndrome in their own words understand themselves and their experiences in a world that is all-too-often unwelcoming.”
–Mary Jo Iozzio, Professor of Moral Theology, Barry University

For those who wish the formal version, an elite task force has come out with a report placing blame for the Virginia Tech massacre far and wide. On the list: confusion about state and federal privacy laws, weak enforcement of regulations over the purchase of guns, inadequate funding of the state’s mental health system and poor administration at the college.

But readers of the Washington Post, reacting to a report that high school special educators had not shared information about the shooter’s emotional problems with college officials, had a few other theories. Veteran newsman Doug Feaver, who runs the paper’s dot.comments blog, wrote that readers posted

… the wide range of opinions all too familiar to those who deal regularly with mental health questions and the profoundly complex problems of how to deal with them. The comments range from blame the system to blame the parents to this must be fixed and include a debate on whether special education or mentally distressed students should even be in public schools. (Emphasis added.)

The comments are displayed. Note the similarity to reader comments accompanying the stories here and here.

One caveat: The ability to post comments anonymously seems to embolden people. Whether the views expressed in blog comments represent the views of a broad segment of the population is anybody’s guess.

Here’s a letter from James B. Gaffney of Portland, Oregon, in response to the post “Stand Tall.” I’m running it here in its entirety in hopes that it will prompt a wider discussion.

Dear Pat,

I wish I’d heard your speech, “Stand Tall,” at the National Down Syndrome Congress convention, but I’ve been looking at it online and thought I’d weigh in. My daughter Karen is the swimmer you referenced in your talk, who participated in an English Channel relay in 2001. She also presented a keynote speech at the conference the day before you spoke, and said some of the same things you said regarding throwing out the bad data and replacing it with what we have learned from the first generation of citizens who were not institutionalized wholesale at birth.

As you put it, I have been trying to turn up the volume for a long time – without any measurable success. Instead, I had resigned myself to watching Karen make her own music, which wasn’t a bad place to be. But inside me there is a screaming voice aimed at the topics you brought up in your talk. Sometimes I have let the voice out, but so far it hasn’t connected. Even in friendly circles people seem to immediately turn off any kind of passionate discussion about anything to do with abortion.
(more…)

From the Independent (UK):

“Last summer, I decided to kill my brother.” Coming Down the Mountain, the first TV drama by Mark Haddon, opens with this provocative line.

But the controversial nature of the film does not end there. David (played by Nicholas Hoult), the putative brother-killer, is in a rage because he feels his life has been ruined by his sibling, Ben (Tommy Jessop), who has Down’s syndrome. David is brutally disdainful of Ben: “Sometimes they change the recipe and you get a brother who is a big potato with eye tentacles. And then you might as well talk to the dog – if you have one. “

Here’s an interview with Haddon, who acknowledges that the film will make some people uncomfortable, and actor Jessop, who is described as a “vibrant, magnetic presence.”

Jason Zinoman, writing in the New York Times, attempts to reconcile playwright Arthur Miller’s public persona as a man of honor with the recent revelation that he institutionalized his son Daniel, who has Down syndrome, and essentially cut him out of his life. The piece cautions against using information about an artist’s private life to draw conclusions about his work. Miller biographer Martin Gottfried is quoted:

It may be an irony that Arthur Miller did this … But it’s only a small part of who he is. There’s more to Tennessee Williams than being a dope addict, and there’s much more to Arthur Miller than this.

Earlier stories here and here and here.