Christine Rosen, writing in the Wall Street Journal, memorializes Harriet McBryde Johnson as someone who made society look at disability as a natural part of the human experience. Johnson, she says, demonstrated that disability transcends the convenient categories that often stymie political discourse: secular or religious, liberal or conservative. Johnson held up a mirror to a society whose acceptance of disability wanes as its scientific powers to eliminate disability grow.

As an example, Rosen cites the “rapid near-disappearance of people with Down syndrome.”

As a culture, we have made what Amy Laura Hall of Duke University Divinity School calls a “democratic calculus of worth” regarding Down Syndrome. And that calculus has resulted in a society hostile to people who refuse to make the culturally acceptable choice of ridding themselves of a disabled child before she is born.

… if choice and prevention produce a culture that equates disability with irresponsible parenting decisions, then the homage we pay to accommodation will prove hollow indeed. And as the population ages, and more Americans find themselves living with disabilities, questions about worth at the end of life will become even more pressing. Thanks to people such as Harriet Johnson, we have not yet reached the point where accommodation has given way to neglect or elimination. But we would do well to respect what Ms. Johnson’s own life so ably demonstrated: People with disabilities, she said, “have something the world needs.”

Christine Rosen is senior editor of The New Atlantis: A Journal of Technology & Society, and the author of Preaching Eugenics: Religious Leaders and the American Eugenics Movement.

Writing in the Boston Globe, former U.S. ambassador Jean Kennedy Smith calls for an international effort to support refugees who have disabilities. These people are neglected, marginalized and largely invisible, she says, and have long been excluded from care programs because there was little reliable data on their numbers.

An upcoming report by the Women’s Commission for Refugee Women and Children documents that there are up to 3.5 million refugees with disabilities around the world.

We know from witnessing many examples of remarkable people who have overcome the barriers surrounding disabilities that they, too, possess skills, knowledge, and experience that can help them remake their lives and rebuild their communities. Yet for much of the world, displaced people who are disabled simply do not exist.

Because their situation is widely viewed as peripheral to that of the overall refugee population, they rarely figure in tallies of the displaced. And there is usually little or no provision for them in mainstream assistance programs, let alone services tailored to their specific needs. Leaders of such programs should provide services and end this squandering of human potential.

… if we care enough to do enough, anything is possible.

Parents who want to save to help their children with disabilities should be eligible for tax breaks just like parents who save for college education, says a Washington Post editorial.

Several bills have been introduced in Congress to create tax-free savings accounts for people with disabilities. They could help families provide a financial cushion without endangering eligibility for Medicaid or Supplemental Security Income (SSI).

From the BBC:

The United Nations is celebrating the coming into force of the Convention on the Rights of Persons with Disabilities (CRPD) — a landmark agreement that aims to give the world’s 650 million disabled people full equality. The measure took effect earlier this month after the 20th nation ratified it, in this case Ecuador.

So far some 25 countries have ratified the convention — starting with Jamaica in March last year. The largest nations that have already ratified it include India, Mexico, the Philippines and South Africa. Spain, Hungary and Slovenia are the only EU nations on the list so far.

… disability campaigners in the UK are critical of their government’s “reservations” on residential care, segregating education, employment in the armed forces and freedom of movement for disabled people with regard to nationality and immigration

… It is estimated that about 10 percent of the world’s population lives with some sort of disability, making disabled people the world’s largest minority. This figure is likely to increase as a result of medical advances and the world’s aging population, according to the World Health Organization.

… In some countries, disabled child mortality is as high as 80 percent even when the general level of mortality for the under fives has dropped below 20 percent.

See earlier posts:

• Op-ed: Washington’s phobia of global treaties
• World leaders urged to act on disability rights

From Northumberland [Ontario] Today:

Ontario Lt. Gov. David Onley, who himself had polio and uses a motorized scooter, says there are strong economic reasons for employing and serving people with disabilities. An anticipated labor shortage, tied to the graying of the baby boomers, makes it vital for employers to take another look at the approximately 15 percent of the population who have disabilities, he said

Contrary to what many employers think, usually there is little that needs to be changed or expense incurred to bring a skilled disabled person into the workplace, Mr. Onley said.

Onley cited the following benefits for employers hiring people with disabilities:

– Studies show they meet or exceed job performance requirements;

– Retention is high and absenteeism is low;

– There is a network of agencies and services to assist such hiring; and

– When you hire persons with disabilities, you build an inclusive, effective and productive work force.

An upcoming book by Ruth Schwartz Cowan, professor of history and sociology of science at the University of Pennsylvania. On Harvard University Press.

From the publisher’s website:

The secrets locked in our genes are being revealed, and we find ourselves both enthused and frightened about what that portends. We look forward to curing disease and alleviating suffering—for our children as well as for ourselves—but we also worry about delving too deeply into the double helix. Abuses perpetrated by eugenicists—from involuntary sterilization to murder—continue to taint our feelings about genetic screening.

Yet, as Ruth Schwartz Cowan reveals, modern genetic screening has been practiced since 1960, benefiting millions of women and children all over the world. She persuasively argues that new forms of screening—prenatal, newborn, and carrier testing—are both morally right and politically acceptable. Medical genetics, built on the desire of parents and physicians to reduce suffering and increase personal freedom, not on the desire to “improve the human race,” is in fact an entirely different enterprise from eugenics.

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… here’s a partial and unofficial transcript of the BBC interview with Tomato Lichy (left). The artist and designer is advocating for the right of deaf people to use reproductive technology to select for deaf children, which would be prohibited under the British government’s Human Fertilization and Embryology (HFE) bill, set to pass the House of Commons this spring. Reaction to the interview is here.

The interview by John Humphrys was first broadcast on the Today program on BBC Radio Four.

Humphrys: Do you not have an obligation to the child that may be born that that child should be able to hear if at all possible?

Lichy: If you see deafness as a disability, yes. But I don’t view deafness as a disability. I feel very positive about the language, about the culture and about the history of deaf people, and I’m very involved in the deaf community

And also, we already have a deaf child. If we say to her in the future we had a deaf embryo but the government told us we couldn’t have that one, how would she feel about it as a deaf person herself if the government had forced us to do that?

Humphreys: You may feel very positive about your deafness, and you are absolutely of course entitled to feel that, but surely you’re not entitled to make that decision on behalf of an unborn child?

Lichy: I’m nor religious myself, but people say to me: God created me as a deaf person, why would you oppose God? These children are created, these embryos are created, they should have equal chances in life. I mean really for me the core issue is that the government is saying that deaf people are not equal to hearing people.

Despite the fact that over time we’ve had more and more rights for disabled people, now they’re seeking to establish a legal principal that deaf people are inferior to hearing people. And there may be more laws once this gap opens. I think we have to stop that principle being established that deaf people are inferior to hearing people.

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