Kudos to Susan M LoTempio for her essay “How the News Media Handicap Those with Disabilities.” Writing for the Poynter Institute, a school for journalists, LoTempio rightly skewers “feel good” stories about overcoming disabilities and takes writers to task for using language that reduces people to pitiable stereotypes. She targets a recent NPR report using the phrase “confined to a wheelchair” as inaccurate and disrespectful. She launches a dart at a story in Editor & Publisher bearing the headline: “Deaf Photog and Blind Editor Overcome the Odds Together.”

Writes LoTempio:

“Overcoming the odds” is one of several troubling formulas that journalists choose when writing about people with disabilities. The others are, sadly, making people into heroes, objects of pity or sources of inspiration. None of those formulas will ever give a full and accurate portrait of a person with a disability because it crams the individual into some preconceived notion of what his or her life is like (but rarely is).

LoTempio also offers laurels to a New York Times story about amputee sprinter Oscar Pistorius, who wants to compete in the Olympics. He uses carbon blades instead of feet. (See my earlier post here.)

A comprehensive discussion of troubling stereotypes in the media would take more time than we’ve got, but here’s a recent nominee of mine:

USA Today’s story “Despite Down Syndrome, sons compete — and win,” in which the writer profiles a single woman with multiple sclerosis who adopted four children with Down syndrome. The usual upbeat quotes about “doing your best” and winning medals in the Special Olympics are highlighted. It’s hard to imagine the writer finding a less typical, and more stereotypical, subject for a story. If the writer has ever encountered a person with a disability before, or has any concept of what their lives may be like, it’s not apparent here. My favorite quote: “Not surprisingly, Teri, a single parent, is considered a minority, if not an exception, for doing what she does.” No, do you think?

Susan’s essays can be found here.

In this morning’s New York Times: “States face touchy decisions on who is mentally fit to vote.”

It’s a thoughtful consideration of what happens when officials try to determine eligibility for voting, tiptoing around conflicts among the legal, medical and popular definitions of such terms as “insanity,” “idiot” and “non compos mentis.” This is a tough subject, and it’s approached with care. Rights and risks of vulnerable people are discussed; someone asks whether people with medical diagnoses should be subjected to greater scrutiny than the average person (who may be making decisions based on jokes heard on the Daily Show.)

So then why do I have a headache? It’s this quote, from the chairman of the Cranston, R.I., board of canvassers:

“I just think if you are declared insane you should not be allowed to vote, period. Some people are taking these two clowns and calling them disabled persons. Is insanity a disability? I have an answer to that: no. You’re insane; you’re nuts.”

Nuts. Is that the legal term in Rhode Island?

The Seattle Post-Intelligencer carries an insightful column by Anne McDonald about Ashley, the 6-year-old girl whose uterus and breast buds were removed at the request of her parents. The parents had argued that it would would be easier to care for their daughter, who has mental and physical disabilities, if she did not grow to an adult size, and that a childlike body would afford her “more dignity and integrity than a fully grown female body.” In their blog, the parents (who have not revealed their identities publicly) refer to their daughter as “Pillow Angel.”

Last month, in the face of an investigation and mounting controversy by disability rights advocates, Children’s Hospital in Seattle admitted that the hysterectomy was illegal.

McDonald’s column explores her own experiences as a child whose growth was attenuated and whose potential was overlooked by medical professionals. She questions the assessments of Ashley’s abilities, and criticizes the decision to subject the girl to surgery without an effort to obtain her participation and consent for the procedure.Her words:

“My ongoing concern is the readiness with which Ashley’s parents, doctors and most commentators assumed they could make an accurate estimation of the understanding of a child without speech who has severely restricted movement. Any assessment of intelligence that relies on speech and motor skills cannot conceivably be accurate because the child doesn’t have any of the skills required to undertake testing. To equate intelligence with motor skills is as absurd as equating it with height.

“The only possible way to find out how much a child who cannot talk actually understands is to develop an alternative means of communication for that child. An entire new discipline of non-speech communication has developed since I was born in 1961, and there are now literally hundreds of non-speech communication strategies available. Once communication is established, education and assessment can follow, in the usual way.

“No child should be presumed to be profoundly retarded because she can’t talk. All children who can’t talk should be given access to communication therapy before any judgments are made about their intelligence.

“Ashley’s condemned to be a Peter Pan and never grow, but it’s not too late for her to learn to communicate. It’s profoundly unethical to leave her on that pillow without making every effort to give her a voice of her own.”

Just heard a speech by Walter Smith, managing partner of international law firm Baker, Botts, who was being honored for the firm’s commitment to hiring people with intellectual disabilities. To learn more about the program, click this link.

There was also an article about the program in the Washington Post by Amy Joyce that ran last October. (Headline: Beyond disability barriers: Employees quickly emerge as assets.) Click here for the article preview; it’s now pay only.
Here’s what Walt had to say:

“We got as much or more out of this experiment as did our special needs employees. In fact, our lawyers and staff have responded so favorably to the idea, that we now have eight full-time special needs employees in our five offices in the U.S.

“It just so happens that professional service firms — that’s law firms, accounting firms, consulting firms and the like — are ideal places to work for individuals with cognitive or physical disabilities. We have a safe and quiet environment that lends itself to training and mentoring. We have a relatively educated and caring workforce. But most importantly, we have work they can do that needs to get done.”

Companies that follow the Baker, Botts example, he said, will

“… not only be doing a great service, they’ll get a great employee as well. One who will show up for work every day with a smile on his or her face, eager and thankful for the opportunity. And remember: you won’t just be helping them make a living, you’ll be helping them make a life.”

Okay, it’s a small school district, but we’re deluding ourselves if we think these practices aren’t widespread.

I’m talking about confidentiality agreements. The Santa Monica, California, School District has been requiring that parents of children with disabilities promise to sign confidentiality agreements (translation: stay silent) in return for getting the educational services they feel their children deserve. Parents have criticized the policy as an effort to intimidate them into silence and put a lid on political organizing. District officials say they’re just keeping costs down.

The controversy had been simmering for a while, then came to a head when the school board also required that its departing CFO sign a confidentiality agreement in return for a cash settlement.

Now the Santa Monica city council has weighed in, voting to withhold funding unless the school district changes its ways. Read the link here. And then tell me that this isn’t happening elsewhere. I’ll believe you. Really.

A friend sends this article from the Sunday Times in London. Here’s the text:

More than 20 babies have been aborted in advanced pregnancy because scans showed that they had club feet, a deformity readily corrected by surgery or physiotherapy.

The article goes on to say that abortions were also carried out for webbed fingers or extra digits, which can be corrected by simple surgery. All the terminations took place after the 20th week of pregnancy, although the specific week of pregnancy for each was not disclosed. The data, from the Office for National Statistics, added to controversy that had been ignited when a British woman had an abortion at 28 weeks for cleft palate, another surgically correctible condition. It’s worth noting: babies delivered at 27 weeks have a survival rate of more than 90 percent.

More text from the article:

Some parents, doctors and charities are increasingly worried by what they see as a tendency to widen the definition of “serious handicap”. The handicap provision, which does not exist in most other countries, permits abortions to be carried out until birth. It was intended to save women from the trauma of giving birth to babies likely to die in infancy.

Among people who have had club foot: Kristi Yamaguchi, the American figure skater who won an Olympic gold medal in 1992.

Data here on the unintended consequences of prenatal diagnosis, this from the journal Intellectual and Developmental Disabilities. Mothers of children with Down syndrome in Germany report a much greater feeling of being involuntarily segregated in society today, compared with data collected before the widespread acceptance and availability of prenatal chromosome analysis. The authors note this finding comes even as the prognosis for newborns with Down syndrome is better than ever before in terms of life expectancy, health care and psychosocial support.

“Accordingly, parents of children with Down syndrome may experience a somewhat paradoxical contrast in society between prenatal rejection and postnatal acceptance of their child.”

More quotes:

“…. In a recent survey in Germany of parents with children who have Down syndrome, 26% reported that they had been confronted with accusations that the birth of their child could have been ‘‘avoided”. This rate was as high as 40.5% among those parents who had received the diagnosis of their child’s disability prenatally. This observation supports the widely discussed assumption that the availability of prenatal diagnosis puts affected families under social pressure by undermining the acceptance of their child with disabilities.”  

The authors conclude that mothers experience feelings of greater personal stability and self-confidence than they did 30 years ago, presumably aided by parents’ self support groups, but that they also increasingly feel that their children are being discriminated against.

“… mothers of children with Down syndrome, which the general public widely recognizes as the most prominent example of a prenatally diagnosed genetic disorder, tend to experience the availability of prenatal diagnosis as an emotional burden. Nonetheless, mothers wishing that their child would not live anymore remain rare exceptions. The improved medical care and psychosocial support for children with Down syndrome and their families seems at least to outweigh the emotional stress caused by the option of prenatal diagnosis.”

The report appears in Volume 45, number 2: 98-102. The journal is published by the American Association on Intellectual and Developmental Disabilities. Lead authors: Wolfgang Lenhard, PhD, Erwin Breitenbach, PhD, and Harald Ebert, PhD, institute of Special Education, Wuerzburg University, Wuerzburg, Germany.