Oral history of British science
Shirley, Stephanie (Part 12 of 15). An Oral History of British Science.
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Interviewee's home, Henley-on-Thames
Shirley, Stephanie, 1933- (speaker, female)
Lean, Thomas (speaker, male)
Part 12: Comments on stress of work leading to 60 a day smoking habit, despite Uncle giving her a cigarette that she hated as a child, using acupuncture to help her give up. [03:11] Comments on involvement with IT82: headed by Alan Benjamin; SS heading a section on disabilities and technology; impression of Kenneth Baker as cultured, whose wife Mary SS knew through Forum; value of such focuses on a topic. [06:30] Remarks on increase of importance of family: birth of son Giles in 1963, initially balancing baby care with work; realising Giles was disabled. [09:50] Comments on deterioration of Giles' behaviour as a young child, extended stay in diagnostic hospital in Oxford where SS stayed for some weeks, initial diagnosis of a degenerative brain disorder, Great Ormond Street Hospital diagnosis of Autism. [13:30] Remarks on autism diagnosis methods. Comments on having Giles at home: social pressure for parents to raise children themselves; making outside appointments on Tuesday afternoons while babysitter was round; SS and DS sleeping in shifts; Giles problems at nursery and being unable to play. [17:42] Comments on: Giles attending a training centre, until she realised she had been slapped; autistic children being regarded as uneducatable; [cough] quest for suitable school leading Giles to the Walnuts school outside Milton Keynes headed by Janice Pratt. [21:25] Remarks on problems when Giles finished school. Remarks on situation when Giles first diagnosed: feeling surprised; in-laws ashamed; very draining; sharing burden with DS. Comments on support: help from two local girls who wanted to be carers; friends taking Giles out occasionally; using the little free time for basic domestic functions; emotional strain on SS. [25:27] Remarks on her breakdown when Giles was 13, admission to hospital by a psychiatrist who helped her and DS to come to terms with situation, leading to Giles's hospitalisation. Description of conditions in Giles' secure ward. Remarks on exhaustion of Giles coming home at weekends for a time, before they switched to visiting him only on Sundays to picnic in the grounds of the hospital. [30:30] Remarks on Giles's limited recognition of DS and SS, changing to visiting arrangements due to drain on SS. Remarks on: care hospitals, coming to terms with Giles' problems, value of school to provide structure, DS joining a committee to close improve education legislation for disabled teenagers. [34:07] Remarks on DS being a loving but undisciplined father; stigma of a disabled child; joining Mencap; becoming closed in to protect oneself; Giles becoming violent; DS different reaction to Giles' death. Comments on changes for the worse in the hospital leading to complaints to the Ombudsman, George Sala suggesting that she could afford to look after Giles on her own resources. [39:51] Remarks on buying Redcot cottage for Giles; extra picnics in the hospital grounds for Giles after DS's retirement with aid of ex-hospital staffer Phil; gradually setting up Giles at Redcot leading him out of the hospital; difficulties of finding Giles medical support in the community; taking some years to acclimatise Giles to outside world; financial help from the disability living foundation; [45:15] difficulties prior to care in the community; selling shares to support Giles. Description of Redcot Cottage. Comments on Redcot leading to her first charity Kingwood: new cottage for Giles, The Cuddy, large enough to take in more patients; having to support arrangements herself prior to granting of charity status; growth of Kingwood with new homes White Barn and Conchiglia; learning about social services and growing a charity; employment of managers and gradual change in her role; [51:21] differences of charity to work meaning that she was still fresh on a Monday after helping on weekend, compared to DS who was more involved during the week. Remarks on: problems and difficulties before charity became self sustaining, reasons to expand charity; deciding to support other organisations out of company shares and forming the SF. [55:30] Comments on further donations to develop strategy to support pioneering projects that may make a real difference, initially in Autism and IT, such as WCIT. Story about visit to Higashi School in USA, which used exercise as Autism therapy, and inspired her to create a similar school in Britain. [1:00:18] Comments about setting up school from 1997: assistance of Kate Luker who became project director; suggestions for site; similarities of charity work to business; finding suitable existing school, Kingswood for sale outside Newbury; recruiting principal Robert Hubbard. [1:05:38] Comments on opening of school: only having two pupils at first but numbers soon growing; tasks needed to set up school; criteria for Autism and challenging behaviour based on Giles; girls as well as boy pupils keeping balance; opened by Princess Royal in 2000; extra facilities funded by efforts of fund-raising committee; SS's growing confidence in charity work; less involved now except for such special occasions. Description of school, which was partly listed and set in large grounds of parkland. [1:11:50] Remarks on Prior's Court providing everything she would have wanted for Giles; a spiritual side provided by her loan of a collection of contemporary British art; reasons for providing for the spiritual side of education.
Interview with entrepreneur, computer scientist and philanthropist Dame Stephanie 'Steve' Shirley.