Welcome!

The Strange Case of Anna Stubblefield and other Tales of Communication Advocacy and its Discontents

Devva and Susan welcome you to this new resource prompted by the Stubblefield trial. It’s in its infancy and will grow only with your help. We need you to help us identify resources and to add your thoughts to the blogs. This is meant to be a place where we can share an open dialogue about the issues raised when two people get caught up in a maelstrom as Anna and DJ are.

There is not enough information for any of us to know the real truth of what happened. DJ has no voice, nor any current access to any other mode of communication with us, so it will only be the words of others who speak for/about him. This website will not act as another trial. No one, no idea, nor any activity is on trial here, but all are open to critical scrutiny.

There are issues to discuss, no matter what you think of the trial’s verdict. How can a person who is significantly disabled be given a fair opportunity to represent their views when they cannot speak? Can a person have a guardian and be self-determined? Can it ever be consensual for two people with extreme differences in privilege to have sex? What does it say about our society when someone finds it unimaginable that a person not considered disabled could be in love with a person who is considered very disabled? Is there such a thing as disability justice? Have we got the concept of intelligence all wrong?

What do you think? Chime in! You can comment on any of the topical threads. You will find instructions under the “Mission” topic.

Devva Kasnitz, PhD

devva@earthlink.net

About Devva Kasnitz

Devva Kasnitz, Ph.D. I trained as a cultural geographer at Clark University and then as a medical anthropologist at The University of Michigan, with postdoctoral work at Northwestern University and at the University of California, San Francisco in health policy and disability in urban and medical anthropology. I have worked in the area of disability studies for the last 34 years while still maintaining an interest in ethnicity and immigration. I was on the founding boards of: the Society for Disability Studies, the Anthropology and Disability Research Interest Group, and the Association of Programs for Rural Independent Living, and have mentored a generation of disability studies scholars in the US, Australia, and Guatemala. I have directed research at the World Institute on Disability and the Association of Higher Education and Disability. I am currently Adjunct Professor at the City University of New York in their MA program in Disability Studies. I have received research funding from NIH, NIMH, NIDRR, American Anthropological Association, The Felton Bequest, and Sprint Foundation. I was a 2000 NIDRR Switzer Fellow and am the 2014 recipient of the Society for Disability Studies, Senior Scholar Award. I was the Director of a California independent living center and currently represent disabled citizens on the California state Telecommunications Access for the Deaf and Disabled Administrative Committee. My current work focuses on speech impairment and the politics of social participation and on disability services in higher education. With Pamela Block, a book on speech impairment is forthcoming. I live in Northern California, behind the redwood curtain, surrounded by my family—most importantly one 10 year old stepson—and by chickens, spinning wheels, looms, and baskets full of fleece, yarn and fiber waiting to become cloth.

2 thoughts on “Welcome!

  1. We’ve been here before.

    Is it possible for an adult to weigh just 33 pounds (15kg) and survive?

    Is it possible for an adult to grow 18 inches (45 cm)?

    Is it possible for a person assessed as ‘profoundly mentally retarded’ (IQ<20) who can’t speak or hold a pencil, to graduate university?

    Try ranking the probabilities – how probable is any one of those events?
    What’s the most likely? What’s the least?

    As it happens, not only did all three events occur, they are all recorded in the medical records of one person.

    Australian communication pioneer Anne McDonald weighed 15kg at the age of 18 when she fought a successful Habeas Corpus action in the Supreme Court of Victoria to win her release from St Nicholas Hospital, a state institution for children assessed as severely and profoundly retarded in Melbourne, Australia.

    Once she was given enough to eat Anne started to grow. She grew from 3 foot 6 inches (105 cm) at age 18 to 5 feet (150 cm) at age 26. Her weight increased from 33 lb.(15 kg) to110 lb.(50 kg).

    Along with her weight and height records from her admission aged 3 till her discharge aged 18, Anne’s St Nicholas file records her assessments. The admitting psychiatrist labelled her as ‘severely retarded’ (IQ <35) because she couldn’t walk, talk or feed herself. At age 12 she was reviewed by a medical officer and labelled ‘profoundly retarded’ (IQ <20) because she still hadn’t learnt to walk, talk or feed herself. She had received no education and 3 months of physiotherapy in the intervening 9 years. She had no wheelchair, and lay on the floor all day, unable even to sit up or crawl due to severe athetoid cerebral palsy. Anne’s final state assessment was administered when she was 17 by a paediatrician using the Bayley Infant Development Scale. He said she had a mental age of 6 months.

    Anne graduated from Deakin University in 1994 with a major in History & Philosophy of Science, along with a major in Fine Arts from Melbourne University.

    Most of Anne’s communication involved spelling with facilitation, with a large number of partners, but after years of therapy she also typed with a headstick (very slowly) and answered yes/no and multiple choice questions by pointing without support.

    For a second Supreme Court case a few months after the first, undertaken to win the right to manage her own affairs, Anne was administered a Peabody Picture Vocabulary Test, without facilitation. She scored in the average range.

    Anne participated in two public message-passing tests, in which she had to give answers her facilitator didn’t know. One took place in the Supreme Court and the other on camera on Sixty Minutes. Both were successful.

    Further information can be found in Annie’s Coming Out (http://www.annemcdonaldcentre.org.au/annies-coming-out), the book she wrote with Rosemary Crossley.

    Anne was lucky: she never had to face a jury trial, and never had to convince a cross-section of the population sharing all of our society’s prejudice against people with disabilities that she could be competent despite her appearance and despite her previous assessments.

    We should always keep a firm grip on the difference between the impossible and the improbable, and we should never confuse either with the inconvenient.

    Liked by 1 person

  2. I love your optimism. I keep thinking that the guardianship system is broken. Surly one’s status should be regularly reassessed by a team that must include someone new each time with an attitude that assumes competence.

    Like

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