Martha Mason (1937 - 2009)

Image description: Martha Mason with her friend, Mary Dalton, who produced a documentary about Ms. Mason's life in 2005.

Since my post last Friday about the death last week of Martha Mason at age 71, there have been numerous remembrances of her life. Here is an excerpt from a remembrance by Margalit Fox in the New York Times:

From her horizontal world — a 7-foot-long, 800-pound iron cylinder that encased all but her head — Ms. Mason lived a life that was by her own account fine and full, reading voraciously, graduating with highest honors from high school and college, entertaining and eventually writing.

She chose to remain in an iron lung, she often said, for the freedom it gave her. It let her breathe without tubes in her throat, incisions or hospital stays, as newer, smaller ventilators might require. It took no professional training to operate, letting her remain mistress of her own house, with just two aides assisting her.

Ms. Mason's memoir, “Breath,” was published by Down Home Press in 2003. As well as being the subject of Mary Dalton's documentary film, “Martha in Lattimore,” released in 2005, Ms. Mason also appeared in “The Final Inch,” a documentary about polio that was nominated for a Academy Award this year.

There are other memorials here, here, here, and here.

Rest in peace, Martha Mason.

RIP, Nancy Eiesland (1964-2009)

Image: a black-and-white portrait of Nancy Eiesland, from her faculty webpage

I've just read over at DSTU the sad news that Nancy Eiesland, Professor of Sociology of Religion and Disability Studies at Emory University, died this week from cancer. Her colleague, friend and former student Christian Scharen has written this memorial, and following is an excerpt of a piece she wrote last year in a campus publication about her experiences with surgeries and pain as she returned to teaching after a long illness:

For the last 18 months, I’ve been in the fight of my life to best a drug-resistant staph infection that had invaded my spine — where I had years before had metal implanted to keep me upright. Colleagues and acquaintances who knew my status as a person with a disability would often say, “I don’t think of you having a disability.” Of course, their misguided compliments gave me fodder for the truth-telling that they (like many) participated in the misapprehension that being capable and intelligent was incompatible with being a person with a disability. But over time, I have realized that I was a collaborator in those stories; many people trotted out this old saw because I didn’t think of myself as a person with a disability, though I had long identified as one. I had learned to overachieve, so that my competence was unassailable and my independence was a marker of a true blue American. As a toddler, I began the operations that were to eliminate my birth defect. But soon the one constant in my body was the register of pain. In the effort to first quantify and then control pain, the medical world created the insidious pain faces scale. If I’m an 8 am I obliged to drum up tears to begin to approach the picture to be truly convincing? I could never fix a number to pain, nor did I do well with the multiple choice approach. I always imagine a Freddy Krueger slasher scene during which he might stop and ask me if I’d prefer to be stabbed, burned or beaten.

Amongst her publications, the books:

A Particular Place: Urban Restructuring and Religious Ecology in a Southern Exurb (Rutgers University Press, 2000)

Human Disability and the Service of God (Abingdon Press, 1998), co-editor with Don Saliers

Contemporary American Religion: An Ethnographic Reader (AltaMira Press, 1997), co-editor with Penny Edgill

The Disabled God: Toward a Liberatory Theology of Disability (Abingdon Press, 1994)

Recommended reading

This artice in yesterday's UK Sunday Times by columnist Dominic Lawson. It reflects on the meaning and legacy of six-year-old David Cameron, the son of British Tory party leader David Cameron who died recently from complications of Ohtahara Syndrome, a severe form of cerebral palsy which also involves a rare type of epilepsy. Here is an excerpt:

While we are no longer a country in which children with congenital disabilities are institutionalised and for ever hidden from view, there remains a visceral public fear and even horror of what appears to be the “otherness” of such conditions. This can be seen in the number of formal complaints to the BBC by adult viewers upset by the appearance of a presenter of CBeebies, Cerrie Burnell, who was born without a lower half to her right arm. Apparently some of the comments on the CBeebies website - a children’s channel, for heaven’s sake - were so vicious that the BBC felt compelled to remove them. This is actually very similar to racism, when fear of otherness mutates into repulsion.

Yet even those who think of themselves as sympathetic can be astonishingly insensitive - in the nicest possible way. I couldn’t help noticing how many people expressed the view that the death of a totally dependent child with multiple disabilities, including an undeniably distressing form of epilepsy, must also have come as a relief to Mr and Mrs Cameron.

I too am the father of a child with a congenital disability - my younger daughter, Domenica, has trisomy 21, also known as Down’s syndrome. When she was born, an acquaintance who had a child with cerebral palsy told me: “Your problem won’t be that you will not love your new daughter, but that you will love her too much.” He was right, of course: it was a salutary warning not to neglect the needs of siblings.

Love should never be confused with pity, a sentiment we feel only for those whom we really don’t know at all. It infuriates me that children such as Domenica are invariably described as “suffering from Down’s syndrome”. In what way are they suffering? They have no disease. They have no ailment to “cure”, except - via the process of antenatal screening - their very existence.

The essay in full is here ... See also: The funeral of Ivan Cameron from the UK Times

(h/t to Patricia Ee Bauer)

RIP, Christopher Nolan

Acclaimed Irish writer Christopher Nolan died on Friday in Dublin. Mr Nolan, who had cerebral palsy, produced a highly praised volume of verse and short stories when he was 15 years-old, and then went on to receive the prestigious Whitbread Prize for his autobiography, Under the Eye of the Clock. According to family members, the cause of his death was food trapped in his airway. Mr Nolan was 43.

Mr Nolan had been able to communicate only through eye movements until the age of 11, when he began to take a new drug to relax his neck muscles. He began writing with a “unicorn stick” strapped to his forehead, typing a letter at a time on a keyboard as his mother held his chin in her hands.

Here is an extract from his obituary in the New York Times:

A prominent Los Angeles producer wanted to make a film of Mr. Nolan’s life story.

Mr. Nolan turned the offer down.“I want to highlight the creativity within the brain of a cripple,” he wrote to the producer, “and while not attempting to hide the crippledom I want instead to filter all sob-storied sentiment from his portrait and dwell upon his life, his laughter, his vision, and his nervous normality. Can we ever see eye-to-eye on that schemed scenario?”

The full obit is here ...