… 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.

(more…)

A disability in the family; Film shows parents’ response to a child with cerebral palsy

From the Washington Post:

New Hampshire photojournalist Dan Habib documents his family’s journey with son Samuel, who has cerebral palsy.

In the film, we learn that in many ways, Samuel is much like any other 7-year-old. He likes hot dogs and tee ball, and is debating between careers as an astronaut or a race car driver. Like a good New Englander, Samuel roots for the Boston Red Sox, and he loves watching games with his big brother, Isaiah, 11.

… As for Samuel’s education, Habib is pro-inclusion, meaning that he wants Samuel to attend the same types of schools that Isaiah does … Habib’s views presented a challenge for him as a journalist, because he wanted to show both sides of the inclusion issue. An emotional interview with Carol Ward, a horticulture teacher at a public high school, reveals the strain that the policy can have on teachers.

“I did not have any formal or informal training to have these students in my class,” Ward says in the film. “I have cried many times about this year. I don’t know what to do. I don’t want another year like this year.”

Related links:

• The film’s website
• Dan Habib’s guest blog at the Washington Post’s On Balance
• Earlier post

John S. Clarke, publisher of the Delta Democrat Times in Greenville, Mississippi, notes that his state ranks third in the nation for overall disability rate. (West Virginia and Kentucky are slightly higher.)

He says long-term disability negatively affects the economic health of the state, and urges residents to take better care of themselves. Among his proposals to reduce the disability rate: a mandatory driver’s education course, better diet and exercise habits, enforcement of traffic and drug laws, and less smoking.

Citing a recent explosion in autism cases, Newsday’s editorial page calls for an accurate accounting of the number of autism diagnoses so that resources can be allocated effectively.

… the lack of standard reporting requirements for schools or pediatricians means that agencies and schools don’t know what they face, even in the immediate future. There is a glaring lack of hard data - actual figures - on the incidence of autism among children and adults in specific regions and communities on Long Island.

Without such information, it’s hard to plan for services or to provide funds for them - even though it’s apparent that the problem is growing to such an extent that some advocates call autism a major health care crisis with no end in sight.

An obvious lack of coordination between state, county and local agencies dealing with various services for autism begs for the creation of an inter-agency council that can share information and get a clearer picture of what’s needed. Standardized reporting and diagnostics must be adopted by schools and health services. Some pediatricians are loath to report autism for fear of breaking privacy laws, because autism is not a communicable disease.

The paper reports that the CDC is monitoring only 11 states for autism, and New York is not among them.

Autism is described in the editorial as a “lifelong heartbreak” and a “disorder that can wreck the lives of so many” — language that is sure to offend some autism activists.

See also: Hunting the gene that traps children in their own world: Parents and scientists are hoping that a new detailed analysis based on human genome will bring a big breakthrough within a year. From the Times (UK)

Law professor Albert Scherr of Franklin Pierce University has been awarded a two-year grant from NIH to study genetic evidence and its relationship to the Constitution. In an era in which knowledge of the human genome is growing exponentially, the study will have particular relevance for everyone who has a family history of genetic conditions or disabilities.

Let’s connect the dots:

• Every state has a statute that allows police to collect genetic name-tag information from certain groups of people.
• Seven states take DNA information from all people arrested, even if not convicted.
• There are proposals in some states to build a database by taking samples from every child born.
• Gathering a person’s DNA without their knowledge is not illegal.

And what will governments do with all that genetic information? Scherr says the data collection raises thorny issues — including the possible depersonalization of groups of people.

“You can get to genetic exceptionism, over-determining who people are,” he said. “There can be the thought that we only need your genes to know all about you, who you are. We can forget about one’s sense of one’s self, that being part of what makes us who we are. We could lose our sense of humanity.”

From Seacoastonline.com

Back in the day when my children were tiny, I worked 60-hour weeks as a senior editor at the LA Times Magazine. I depended heavily on the kindness of babysitters and preschool teachers, but the wheels pretty much stayed on the bus until Margaret was diagnosed with leukemia.

After that, it quickly became clear that my husband and I couldn’t manage two kids (one with both an intellectual disability and a chronic life-threatening illness) AND two high-powered jobs. If our family was going to survive, one of the jobs had to go. I left the Times — a great loss for me, but one that seemed unavoidable.

Now that almost 20 years have passed, I often wonder whether the choices are less stark for parents who find themselves in similar circumstances today. Job or family? Family or job? Do people have to choose?

An in-depth story in today’s New York Times Magazine attempts to answer that question – and I guess I’m not surprised to learn things haven’t changed all that much for families despite the passage of landmark federal legislation. Or rather, things are much the same but a lot more lawyers are involved.

Writer Eyal Press introduces us to a woman who lost her job after her baby was born 16 weeks early, a man who was denied a request for time off to care for his ill wife and child, and a woman who was terminated after requesting a different work schedule so she could attend her son’s therapy sessions. He traces lawsuit after lawsuit, discussing the issues in light of the 1993 Family and Medical Leave Act, the 1964 Civil Rights Act and the 1990 Americans with Disabilities Act.

Here’s how the headline frames the debate: “Do workers have a fundamental right to care for the families?” and “The latest front in the job-discrimination battle.”

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?