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Friday, July 5, 2013

Volume 3 Issue 1 of Narrative Inquiry in Bioethics is now available

Please see the table of contents for Narrative Inquiry in Bioethics 

This issue contains a narrative symposium: Taking Bioethics Personally, edited by Tod Chambers. This symposium highlights stories from bioethicists about their own illnesses or the illnesses of family or friends.

The issue also contains two research articles;  The Protectors and the Protected: What Regulators and Researchers Can Learn from IRB Members and Subjects by Ann Freeman Cook, Helena Hoas, and Jane Clare Joyner and Reason for Hospital Admission: A Pilot Study Caomparing Patient Statements with Chart Reports by Zackary Berger, Anne Dembitzer, and Mary Catherine Beach.

There is also a case study by Erica K. Salter called, Should We Tell Annie? Preparing for Death at the Intersection of Parental Authority and Adolescent Autonomy.

Don't forget:

Narrative Inquiry in Bioethics has a new website.

50% off all new journal subscriptions!

My Son is Not a "Write-off"

Barbara MacArthur shares her story about parenting her ASD child in the 1970's. 


When he was a child, Howard, was diagnosed as profoundly autistic and asthmatic: "Just one of those things," the doctors said. One told me he was "a write-off" and "Stop sacrificing yourself put him in an institution and forget him" 

Howard was a noisy, awkward child. Everything was slow--and fractions. I had to chop up a wooden playpen and nail the bars against the bedroom window because he would climb on the sil and push hard against the glass. Once when I picked him up quickly to save him from danger he head butted me and chipped my two front teeth. At 3 a.m. one morning Howard hit me in the eye with a metal bus to wake me up. I had to go to work with a black eye and a cracked nose. 

I always had to work. My husband never supported us and I did not know where he was. He left unexpectedly when I was five months pregnant. In 1973 we received an official letter to say he had died in Manchester. He had never remarried, but nothing was left except just enough to pay the burial expenses. I had managed to buy an old house with a dodgy roof, no bathroom and an outside toilet. It was all I could afford and it took me ages to get rid of the cockroaches, beetles and mice. I managed to carry out repairs myself until I saved enough to pay for proper repairs.

The stigma of being a divorcee with a child with learning difficulties was very strong, and we were regarded as less than second-class citizens. Because of his hyperactivity, screams and tantrums, people thought he was a naughty child with a bad mother. In supermarkets he would go behind the counters and switch any switches on or off, or pull trays of good to the floor. Could you blame the staff for threatening to ban us? If the bus home ever deviated from the usual route he would try to jump off while the conductor and passengers would remark: "Why don't you control that effing boy! Women like you shouldn't be allowed to have children. You should be sterilized." Even doctors did not seem to understand autism and no support was available. I came to believe that what people said must be true; sometimes I used to feel that people were stepping all over me with heavy boots, and that I was beaten down into the pavement. 

I am proud of my son for what he has achieved. He will always be autistic and considered by many as being 'eccentric' or a 'bit odd', but he is popular and has a tremendous sense of humor. Some years ago we signed on for computer courses. My son became so proficient that the tutors nicknamed him 'cyber-junkie.' We both lost education in our youth--me at 14 because my school was gutted by explosive incendiaries during WW2--my son because he was refused admission to any school until he was 10 because he could not speak until then. The Education Department wrote "the medical officer and the educational psychologist have decided that Howard has such a disability of mind as to make him incapable of receiving education."

For 17 years I was full-time career for three people--my elderly parents and my son. My parents gave up their Council flat and lived with us. They died within a month of each other--both in their 90's, in our home, leaving just enough money to cover cremation expenses.

My son and I gained Computer Science qualifications. Howard graduated from University in 2003--Computer Science. Now I am nearly 87 and still Howard's only career. I enjoy time on my own. Go to bed late and watch a late-night film. Tonight as I write, he is in bed and I have just put out the rubbish. He helped earlier by emptying waste-paper baskets around the house, so it is teamwork. But he is often in his own world in his mind. I worry what will happen to Howard when I die. We have our own home and Howard would want to remain here. Howard loves his home and is happy here; it would break his heart to be moved. 

We survived despite the system--not because of it.