World Report on Disability: Someone Gets It

While listening, simultaneously, to the dawn chorus of birds In my garden and the 5:30 a.m. NPR news headlines, I almost switched off the radio to devote my ears completely to the birds. Then I heard a brief news item about the World Report on Disability, scheduled for official “launch” later today. The report makes the point that disability is a natural part of the human condition. Yes, I thought, pumping my fist in the air. Someone gets it. Disability isn’t abnormal or “special” – it’s just another part of what it means to be alive. [Read more]

Discrimination and the Genetic Underclass

Photo of Saddam Hussein after his capture in December 2003. [Source: NYT 120303]
Could the pending federal law prohibit an involuntary genetic test for the likes of Saddam Hussein? What about you or me? [Source: NYT 120303]

If there is an emerging genetic underclass, as bioethicist Dorothy Nelkin predicted in 1992, I could run for class president or class clown. Discrimination based on genetic information, and more significantly, discrimination based on perceptions of the meaning of genetic information, has been one of my central concerns ever since my genetic retina disease was diagnosed in 1973. I explored my own complex perspective on genetic identity, testing and research in Not This Pig.

So it is with guarded optimism that I greet the news that Congress finally passed the nation’s first legislation outlawing discrimination based on genetic information in employment and health care. Here is how Reuters/NYT reported the news yesterday:

A landmark bill to forbid discrimination against people whose genetic information shows a predisposition to certain illnesses won final U.S. congressional approval on Thursday.

Thirteen years after such legislation was first introduced, the House of Representatives passed the bill, 414-1, and sent it to President George W. Bush, who has promised to sign it into law. The Senate approved the bipartisan measure last week, 95-0.

The bill would bar health insurers from rejecting coverage or raising premiums for healthy people based on personal or familial genetic predisposition to develop a particular disease such as cancer, diabetes, heart ailments or many others.

In addition, it would prohibit employers, unions and employment agencies from using genetic information in hiring, firing, pay or promotion decisions. It would also forbid health insurers from compelling a person to take a genetic test.

Backers of the measure said people have declined genetic tests that could help lead to treatment of their ailments out of fear they could lose their jobs or insurance coverage.

The pending law isn’t comprehensive. It won’t end or prevent discrimination that we barely know how to recognize or understand. But in a nation governed by the rule of law (that’s the claim, at least), getting something in writing is the place to begin. The Civil Rights Act of 1964 didn’t end racial discrimination. The ADA didn’t end disability discrimination. For that matter, the Declaration of Independence didn’t make all Americans equal or free. Fulfilling the promises of such social contracts takes generations of struggle.

For the record, here is Dorothy Nelkin’s prescient observation about the future “genetic underclass.” It is the conclusion of her 1992 paper, “The Social Power of Genetic Information,” in The Code of Codes: Scientific and Social Issues in the Human Genome Project (edited by Daniel J. Kevles and Leroy Hood):

The rising tide of biological testing poses a broad range of challenges to standards of civil liberty-particularly the right of privacy to medical information. Numerous organizations, such as insurers and crime control agencies, may insist, with legal and policy support, that their access to medical information is a necessity and a right in view of their responsibilities. But their insistence is at the least debatable, given the exclusion, stigmatization, and discrimination that may ensue from the use and abuse of testing.

The growing availability of biological tests are also challenging standards of professional responsibility-particularly the obligations of confidentiality. As the biological and genetic underpinnings of disease are exposed, the role of the medical expert in nonclinical contexts becomes increasingly important. The company doctor, the school psychologist, the forensic psychiatrist — all professionals with conflicting interests-have assumed greater responsibility in their respective institutions. Sometimes called “double agents,” physicians in these ambiguous roles have dual loyalties-to the company they work for and to their patients. As the responsibilities of physicians in nonclinical settings increase, so too do dilemmas of professional ethics.

The most serious implication of biological testing is the risk of expanding the number of people who simply do not “fit in.” The refinement of food-product testing in the 1960s and 1970s allowed greater sensitivity in the detection of carcinogens, and the number of products defined as problematic greatly increased. In very similar ways, improved diagnostics are refining our capacity to identify deviations from the norm, and, as in the case of product testing, more precise tests are expanding the number of persons defined as diseased. Morever, by allowing anticipation of future problems that may not be symptomatically expressed for years, tests are, in effect, creating a new category of persons, the “pre-symptomatic ill.”

Even as tests improve in certainty and extend the range of what they can predict, questions of interpretation will remain. What degree of correlation will be necessary between existing markers and subsequent physical or behavioral manifestations before social action-such as exclusion from work, tracking in special education programs, or establishing competency to stand trial-may be taken? How do we balance the institutional need for economic stability against the rights of the individual? What is to be defined as normal or abnormal? And whose yardsticks should prevail? In all, we risk increasing the number of people defined as unemployable, uneducable, or uninsurable. We risk, in other words, creating a genetic underclass.

About the image: In the media-giddy hours after the announcement of Saddam Hussein’s capture in December 2003, the U.S. military provided conflicting explanations about what is happening here. An early account said the medic in latex gloves was collecting a DNA sample from inside Saddam’s cheek. Later accounts said it was a routine medical exam, implying humanitarian concern for the prisoner’s well-being. Read more about the implications in Blowback: Saddam’s DNA.

Out from Under: Canadian Disability History

The Royal Ontario Museum (ROM) in Toronto is presenting an exhibit April 17- July 13 exploring Canadian disability history. “A display of 13 diverse objects reveals a rich and nuanced history that pays tribute to the resilience, creativity, and the civic and cultural contributions of Canadians with disabilities,” according to the ROM news release. One of those objects is a trunk (left) used to transport a child’s belongings to the Orillia Asylum for Idiots.

Out from Under: Disability, History and Things to Remember is the first exhibit of its kind in Canada. It was produced in collaboration with students, scholars and alumni from Ryerson University’s School of Disability Studies. The 13-panel installation premiered in October 2007 at the ten-day Abilities Arts Festival in Toronto.

Susan Schaller Speaks on Deaf Culture

Author Susan Schaller will speak about Deaf Culture and the value of language on Wednesday, April 23, at 7:00 p.m. in the Wright State University Student Union Atrium. She is author of A Man Without Words and the forthcoming book, Lives Without Words.

Schaller founded and directed a non-profit organization that produced the educational program and award-winning video, Vital-Signs. Through her writing and public speaking, she promotes equal access to language for Deaf people, and introduces hearing people to an astounding culture based on vision. Schaller’s observations of people living outside of a shared language have inspired her and help answer “What does it mean to be human?”

Her talk at Wright State will address deaf and language rights; how and why people grow up without language in our society; “Ianguageless” people and the importance of signing.

The talk is free and open to the public. It is sponsored by WSU’s Office of Disability Services and the College of Education and Human Services. For more information, contact ODS (937-775-5608;

Augmented Illusions: Tapping

Alex de Jong recommends headphones for the full effect of tapping. The video is accompanied by this text:

Natural behaviour of blind people is all too often seen as deviant. Many who are are blind are told not to click, tap their canes loudly, or stomp slightly. These are all echolocation methods and are all looked down upon as making the blind seem more helpless or ungainly. The view of these instructors is that the blind need to sort of hide themselves in the seeing community to try to “fit in” without causing too many waves. Until these sorts of obstacles are removed many in the blind community may never be able to use echolocation, or even be aware of it.

My white cane has elicited some ridiculous responses in the attitudes of others, but I was shocked to learn that an orientation/mobility instructor would tell Alex not to tap and listen. It makes me grateful that I eluded the rehab system some 35 years ago. Where’s Amy Winehouse when we need her?

Thanks so much for sharing your videos, Alex. I know you will find a feast for the senses when you get back to Paris. Until then, here is a white cane story for you:

I should explain here that I have been an ad hoc cane user for years. I use the cane as an orientation and mobility too only when I need it, depending on the situation. This usually means when walking at night and traveling in unfamiliar or unpredictable environments. Some airports are familiar to me, some are not. All airports are unpredictable places, so I’m sure to use the cane to navigate through them.

Over the years I have strenuously resisted the suggestion that I should always use a white cane, if only to alert others about my visual disability. It’s a mobility tool, I reply, not a symbol, not a stigma.

It was 7:05 when an airport worker arrived with a wheelchair to take me to the shuttle bus. I politely declined the wheelchair. Then, to my amazement, he took the tapping end of my cane and proceeded to walk away, expecting me to follow him. He didn’t know it was a folding cane. I stood my ground. When he reached the furthest stretch of the elastic cord inside the cane, he turned around to see what was wrong.

“Let go,” I said. “”The cane is my tool, not yours.”

I remembered a photo that I saw years ago in Natural History magazine. In it, a child towed an old blind woman with a stick. Each of them grasped an end of the stick, which was about five feet long. They lived in a remote village in Guatemala where onchocerkiasis, a parasitic disease also known as river blindness, was endemic. A stick picked up off the ground seemed like a simple, readily achievable accommodation in that context, but it also served to maintain a safe, prophylactic distance between the guide and the guided. Read more.

Alex de Jong blogs at Augmented Illusions. The video was originally uploaded on his Flickr site, where you will find other videos and still photography.

How China Sees The Torch Protests

Police officers apprehend a pro-Tibet demonstrator waving a Tibetan flag (right) as he tries to interrupt the Olympic torch parade while Chinese athlete Jin Jing (left, in wheelchair) guards the torch April 7, 2008, near the Eiffel tower in Paris. [Photo by Thibault Camus/AP/NPR]

I don’t have a fast or easy opinion about this image. Those familiar with my work and concerns know whose side I’ll take in any controversy involving a person with a disability. “WE are people, not metaphors” is one of my master tropes.  Jin Jing’s photo is a reminder that people, not symbols, are central to protests over Tibet and China. Beyond that, I’m still working through what this iconic image means to me.

NPR’s Louisa Lim tells the story of Chinese perceptions about it:

At 85,000 miles, the longest Olympic torch relay ever was supposed to be a victory lap showcasing China’s peaceful emergence on the world stage. Instead, it has become a public relations disaster, pitting protesters critical of Beijing’s human rights record against China’s loyal citizens. The journey of harmony has given way to a flame of shame.

But in China, the relay’s iconic image is of a wheelchair-bound Chinese fencer cradling the Olympic torch, her eyes shut. The photo, taken in Paris, shows the athlete shielding the torch from a pro-Tibet protester who tried to snatch it from her. That torchbearer, Jin Jing, has become a national heroine.

Hailed as a “smiling angel in a wheelchair” by the Xinhua news agency, Jin’s every move is now front-page news. Her description of how her pride and joy at carrying the flame was snatched away is an analogy for the prevailing mood in China. But many are also defiant. Listen/read more.

Playing By Ear: Evelyn Glennie On How To Listen

The subject of Marlee Matlin’s dancing came up in the comment thread for The ‘Otherly-Abled’ Have Affairs, Too. I suggested that anyone curious about deafness and dancing should explore the music of Scottish percussionist and composer Evelyn Glennie. There are a number of performance videos on the net, and I may drop previous plans for tomorrow’s Mouffe so I can devote it to her. As a prelude, check out Glennie’s talk on how to listen to music with your whole body (from TED 2003). Here’s the synopsis:

In this soaring demonstration, deaf percussionist Evelyn Glennie leads the audience through an exploration of music not as notes on a page, but as an expression of the human experience. Playing with sensitivity and nuance informed by a soul-deep understanding of and connection to music, she talks about a music that is more than sound waves perceived by the human ear. She illustrates a richer picture that begins with listening to yourself, and includes emotion and intent as well as the complex role of physical spaces — instrument, concert hall and even the bones and body cavities of musician and listener alike.

What is TED? The Technology, Entertainment & Design conference.Check it out.

The ‘Otherly-Abled’ Have Affairs, Too

New York Gov. David Paterson discusses his marital infidelities at a news conference on Tuesday as his wife Michelle Paterson looks on. [Source: NYT]
New York Gov. David Paterson discusses his marital infidelities at a news conference on Tuesday as his wife Michelle Paterson looks on. [Source: NYT]

A day after I gushed that I could hitch my wagon to this guy’s star, he and his wife held a news conference where they confessed to cheating on each other. It sounded like something out of the Jerry Springer show. That’s how Fred Dicker, state editor for the New York Post, represented it in an NPR interview. Dicker’s moral indignation sounded like sour grapes because the Daily News scooped his tabloid. I felt a little chagrined, but hardly indignant. Unhitch the wagon, son, and grease the singletree. This star isn’t going anywhere new.

I should have known TV comedians would turn the story into cheesy blind jokes. No worry, John Ridley’s blog has a retort. Read David Paterson’s Got It Going On!:

What do I like about the guy? First day on the job, he admits to having an affair. Second day on the job, he admits to having a number of affairs. Not that I approve of sleeping with other women. Per se. But people are always carping about politicians not being honest and here is Paterson, paint still drying on his office door, throwing out a little TMI.

And let’s not forget that Paterson is legally blind. I only bring that up because Sheri Shepherd — the “blonde” black girl on ABC’s “The View” — joked (I think she was joking) that Paterson “can’t see to cheat.” Know what? I’m sick of people underestimating the otherly abled! Truth is they can screw around just as well as people with two good eyes!

All I can say to that is amen, brother!

Perhaps the final word should go to a homeless guy on Times Square interviewed for a NYT story callled Governors Gone Wild. He held a handwritten cardboard sign “that had syntax problems” but made his point:

I need only $4,300 so I can meet a nice girl like our Governor Spitzer.

Not This Pig: The Litany of Defectives

In the heyday of eugenics in the 1920s and 30s, you could not avoid a figure of speech that I will call the “litany of defectives.” You would find it in college biology texts and popular magazine stories about having healthy babies. It was considered by some to be cutting edge science, and you could run smack into it at the State Fair, where stuffed guinea pigs, white ones and black ones, would be arranged on a board to illustrate Mendel’s laws of inheritance. You can imagine which colors represented “pure” and “abnormal” parents and offspring. The display would be accompanied by a version of the litany that went something like this: idiocy, feeble-mindedness, insanity, blindness, deafness, epilepsy, criminality, prostitution, alcoholism, and pauperism are just a few of the undesirable human traits inherited in the same way as color in guinea pigs.

A more restrained iteration of the litany was recorded in Buck v. Bell (1927), the landmark Supreme Court decision that upheld the police power of the states to compel sterilization of mentally incompetent people housed in state institutions. Justice Oliver Wendell Holmes, the Great Dissenter, spoke for the majority when he affirmed that “heredity plays an important part in the transmission of insanity, imbecility, &c.” Eugenicists in Nazi Germany, who took American legislation as a model when they enacted their own sterilization law in 1933, reduced the litany to one simple, all-encompassing principle: lebenunwertes Leben, or “life not worth living.”

These figures of speech engage what bioethicist Bruce Jennings called the “genetic imaginary,” the representation of some hypothetical future life based on a selective focus on genetic information. Prospective parents construct a genetic imaginary of a future child when they make choices about abortion based on prenatal genetic screening. Anyone who tries to understand the meaning of being “at risk” for a genetic disease does so by constructing a genetic imaginary of life with that disease. Even the trendy consumers who are getting their DNA scanned at commercial gene boutiques are engaging in this imaginary process.

I have spent most of my life trying to understand my own relationship with the genetic imaginary. I’ve spent a long time imagining what Holmes’s “&c.” might mean. I admit, I have an overactive historical imagination. In the 1920s I could have been labeled “hereditary defective.” Today we use kinder and gentler euphemisms. I am the carrier - some might say the victim — of two genetic diseases. A third “affliction” may be waiting in my genes. If there is an emerging genetic underclass, as Dorothy Nelkin predicts, I could run for class president or class clown.

So begins my 2003 memoir, Not This Pig, originally published in Genetics, Disability, and Deafness (Gallaudet University Press). Global attention to Chantal Sebire’s plea for euthanasia convinced me to republish the essay on this site. Please read more and let me know what you think.