tag:blogger.com,1999:blog-8217750984500164269.post5043847767842314662..comments2024-03-02T03:16:49.548-05:00Comments on Every little thing: “We all live in The Matrix?” Alison Piepmeierhttp://www.blogger.com/profile/17972854288403934814noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-8217750984500164269.post-12172341999624172862016-08-14T12:33:12.853-04:002016-08-14T12:33:12.853-04:00I only wish I had known you. Now I can respect wha...I only wish I had known you. Now I can respect what you shared with the world, before your passing.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8217750984500164269.post-62698958917443167782013-04-26T14:12:48.587-04:002013-04-26T14:12:48.587-04:00How strange is it that we are both now in the worl...How strange is it that we are both now in the world of genetics research!?! Who would have ever guessed that?<br /><br />I'm sure I'll have more to say about the topic later (when my brain decompresses from the end of the semester). One thing I will say is that I think you'll find genetics research to be incredibly simple. And, that's where it's difficult. When things are that simple, you need to be really careful how you frame your sentences and which words to use (for social, statistical, and physiological clarity). A lot of science writers/journalists aren't really being that careful. I think that may be where a window of misunderstanding is opening up in the public.<br /><br />Have fun at the conference!Aaronhttps://www.blogger.com/profile/02934533672266399086noreply@blogger.comtag:blogger.com,1999:blog-8217750984500164269.post-51986331354152514012013-04-26T10:34:42.214-04:002013-04-26T10:34:42.214-04:00I can't even tell you how much I love this pos...I can't even tell you how much I love this post. Thank you!<br />Jenniferhttp://www.talk-ds.orgnoreply@blogger.comtag:blogger.com,1999:blog-8217750984500164269.post-52556117339644081182013-04-26T09:31:00.926-04:002013-04-26T09:31:00.926-04:00Thank you, Rachel!Thank you, Rachel!Alison Piepmeierhttps://www.blogger.com/profile/17972854288403934814noreply@blogger.comtag:blogger.com,1999:blog-8217750984500164269.post-46489189973907673392013-04-26T09:15:04.829-04:002013-04-26T09:15:04.829-04:00I can't wait to read more. I love, well I just...I can't wait to read more. I love, well I just love this. Wordshurtorhealhttps://www.blogger.com/profile/12039330463065872512noreply@blogger.comtag:blogger.com,1999:blog-8217750984500164269.post-57748204766352672442013-04-26T07:20:14.566-04:002013-04-26T07:20:14.566-04:00Imagine if we spent our time money and energy on &...Imagine if we spent our time money and energy on "better" focusing on changes to the structures and institutions in which we live instead of changes to each of us as individuals. We all know that schools could be better (even if we disagree about what better might mean there), that health care delivery could be better, that food security could be better that public transportation could be better that voting could be better that the availability of public green space could be better, that systems for deliberating over our needs could be better -- but pose some ideas about what is better here you are caught up in a mass of apathy and rigidity and claims about being "socialist" or "naive." What seems exciting about your conference is the certitude people have about what they can do -- that is the certitude we need to have about changing social conditions.clairenoreply@blogger.comtag:blogger.com,1999:blog-8217750984500164269.post-72496839228450830522013-04-26T06:34:40.697-04:002013-04-26T06:34:40.697-04:00Elizabeth, I think about seizures, too. I'm no...Elizabeth, I think about seizures, too. I'm not yet ready to embrace my brain tumor, and the seizures it has caused to be a part of my life also aren't something I'm quite embracing.<br /><br />But I do get that a large part of what makes my seizures difficult is the effects in the world around me. I'm not in the same situation Sophie is in--I'm not experiencing developmental effects, mostly massive inconvenience. I guess how I'd frame your question: I don't think that the seizures are a cultural construct. How we understand them is the construct, and how we deal with them. I think your imagination exercise is exactly the thing that the disability studies scholar in me would encourage you to do: if we assume that Sophie is who she is, with epilepsy and seizures, what would it mean for us to have a world in which that's simply another form of human diversity? What kinds of supports would need to be in place for her and for you? What kinds of assumptions would need to govern the community so that her brothers were surrounded by people who understood, "Yep, that's Sophie," and who loved her just the way she is?<br /><br />It seems to me that SO MUCH of what makes your life difficult, and Sophie's life difficult, is the stuff that's socially constructed--and that's all changeable! The change of course isn't easy--in some ways it's as hard as changing someone's genetic structure. But that change is possible. And I know you're experiencing that in the community of beloved friends you've assembled who do love Sophie exactly as she is and who do help provide the support and structures for your family's happiness. We need more of that.Alison Piepmeierhttps://www.blogger.com/profile/17972854288403934814noreply@blogger.comtag:blogger.com,1999:blog-8217750984500164269.post-1058271328763100982013-04-25T22:56:07.112-04:002013-04-25T22:56:07.112-04:00What a great post, and I am thrilled that your per...What a great post, and I am thrilled that your perspective will be heard at this conference -- how fortunate for them!<br /><br />I am curious, if you have a minute, and I've wrestled with these things for so long now -- how do you feel about seizures and epilepsy -- is suffering the developmental effects of continued disruptions to the brain a cultural construct? Is "suffering" a construct, too? When I'm feeling particularly beaten down by our day to day life, I try to imagine a world where Sophie was "who she is" but access to all systems was simple, we had enough money for help with her, she could access the beach and feel calm all the time, no one would make her brothers feel like she was a freak, I wouldn't have to fight for her to go to school, well, you know the drill. Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.com