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Hi, I like the sound of your ideal parent although it seems to be based on an ideal (therefore unattainable) world. Here are a few thoughts about some of your questions; > that I am ignoring the changes, often initially negative, that accompany the introduction of a child with a disability into a family; > I think the possible initial negative changes result largely from poorly handled interactions between parents and professionals (which the research at Sheffield is focusing upon), compounded by the negative reactions from others, such as extended family members, friends, colleagues etc (pretty much everyone!) I think this is a transitory phase which could be helped along the way by a number of different things such as better information, less need for battling with services etc but which is often replaced by very positive changes to the family (again dependent on the appropriate support for that family). The key thing is that the post-negative positive phase is limited to the family because it doesn't matter how much I feel we are just a family with a number of lively, demanding, diverse members, to other people (including extended family members)we are the family with the retarded/disabled/special needs/handicapped/bless him/slow learner/not all there/autistic/learning disabled son who goes to 'ill school'. >that many people can be outstanding parents to a child without an impairment but not satisfactory for someone who has an impairment > I'm not sure what the argument is here - that it takes a special parent to bring up a disabled child? Or should it be a disabled parent? Nobody chooses their parents and vice versa (although I suspect my daughter wishes she had her best friend's mum.) What makes an outstanding parent and who is deciding? > thus,the parents should be able to figure out in advance what they can handle if they have the choice, and should be able to avoid what they can't; > Wow - if only! I might have a couple of returns though who I would send back changes on a daily basis. > the parent who uses testing and abortion to avoid a child with a disability in advance will work out fine if a nondisabled child becomes impaired, because when that happens, the parent will already have a relationship with and an investment in the child that will override distress at the impairment. Rubbish!! This is again is a terrible argument which probably shouldn't warrant a response. So I won't. Hope this makes sense, Sara > Thank you to everyone who suggested references for my question on family > > life and quality of life. I knew some of them, but you all provided me a > > great bibliography of things to track down. Every time I post to this > list > > and get the kinds of responses I do, I know how valuable this list is and > > thank everyone who created it and who stays on it. > > > > I want to mention an early book on family and disability that still stands > > out to me as exemplary, that by Rosalind Benjamin Darling, _Families > Against > > Society_. Although I have not reread it in several years, I remember it > > with great respect and appreciation as a book full of recognition of how > > parents came to value their children with disabilities, despite the > initial > > apprehensions and the frequently difficult communications with > > professionals. > > > > I would also be interested in any on- or off-list responses to the > > following: I am arguing that the ideal parent, the one we might like the > > society to aspire to, is a parent who imagines that she or he can lovingly > > embrace and respect any child, with or without an impairment, that all > > parents of any child will need to recognize strengths and deficits, > > disappointments as well as joys, in their child and their parent-child > > relationship. Given this idea, prenatal diagnosis followed by selective > > abortion, or preimplantation genetic diagnosis, perpetuates the idea that > > only certain kinds of children will work within families, will work for > > parents; although parents should be able to make decisions about which > > children they will parent, what they feel their desires are, the society, > > the professionals, and the parents should imagine that living with > > disability is as legitimate, as gratifying, as any other way to live; > > disability is only one facet of a person, and it need not be the deciding > > factor in which child can be gratifying to a parent. It is a bit > difficult > > to put a long argument into a paragraph, and so I risk oversimplifying > > myself and my ideas, but my question for the list is this: My critics > argue > > against these ideas in a couple of ways, that I am minimizing the hardship > > of disability given an inhospitable society; , or if you will impairment, can > > never be reduced entirely to a socially constructed characteristic such as > > sex; and > that > Responses to any of this from anyone? > > (For longer, perhaps overly long, presentations of some of these ideas, > you > > can read by article "Prenatal Diagnosis and Selective Abortion: A > Challenge > > to Practice and Policy," in the _American Journal of Public Health_, > > November, 1999; or you can see my efforts to reply to critics in my > article > > "Why I Haven't Changed My Mind about Prenatal Diagnosis and Selective > > Abortion," in Parens and Asch, _Prenatal Testing and Disability Rights_, > > Georgetown University Press. > > > > I keep thinking I am done with this topic, but there is more to explain, > so > > I keep at it. > > Any help, support, challenges, will be valued. > > Sincerely, > > Adrienne > > Adrienne Asch > > > > ________________End of message______________________ > > Archives and tools for the Disability-Research Discussion List > are now located at: > > www.jiscmail.ac.uk/lists/disability-research.html > > You can JOIN or LEAVE the list from this web page. > ________________End of message______________________ Archives and tools for the Disability-Research Discussion List are now located at: www.jiscmail.ac.uk/lists/disability-research.html You can JOIN or LEAVE the list from this web page.