We had a great turnout for our monthly Disability Studies Meetup at Temple University's TECH Center. It definitely had a literary and artistic flair. Carol asked each attendee to write down the name that they would like to give to their autobiography. I think we have the notes somewhere, but my favorite title was "I Learned Everything from Carol."
The more formal program consisted of a presentation by Sarah Drury on some of the basic computer circuitry that underlay eVokability, a project to expand the emotional expressive range of people with disabilities through new media. Photos from the public performance of the eVokability: The Walking Project can be seen elsewhere on this blog.
Shoutout to Lydia for the bringing the veggies! We are open to suggestions on artists and performers to bring in next month, in conjuction with the Philadelphia's own Independence Starts Here Festival of Disability Arts and Culture.
Showing posts with label disabilitystudies. Show all posts
Showing posts with label disabilitystudies. Show all posts
Monday, October 08, 2007
Look who turned up for the October Meetup!
Friday, January 26, 2007
Auspicious Developments
Just reading of the "blogging news" can consume your life. But one of the bytes that penetrated my consciousness over holiday break was the prognostication that we have now hit a stabilization point for blogging. The point had been reached where the number of time-tested blogs fading out roughly equalled the number of blogs making their debut.
When Disability Studies, Temple University made its debut nearly 2 and 3/4 years ago with this humble post, blogging just beginning to hit the big time, and a number of educators in disparate fields, but particularly in literary fields such as English, where turning to blogs as a way to reach a broader audience and to facilitate group work. Blogs chronicling the disability experience, let along the field of disability studies, were in their infancy. Much of the interchange in the field of Disability Studies took place through the medium of listserves. A tremendous amount of energy continues to be devoted to discussion on listserves such as Disability-Research out of Leeds, and DS-HUM (Disability Studies in the Humanities) and SDS (open to members of the Society for Disability Studies) in the United States, that operate as members-only clubs. The content of these often exciting and useful exchanges is lost to the much broader community of non-subscribing Disability Studies acolytes. In my own modest way, I set out to change that.
Perhaps the credit for getting DS,TU off the ground should go to Lydia Fecteau, an adjuct faculty member at The Richard Stockton College of New Jersey : she created an excellent blog for her Disability and Literature course that is still in our blogroll, and shared the interesting blogs created by students at her school. Or perhaps credit should go to a reference librarian here at Temple University, Brian Schoolar, who started posting his news to a page directed at faculty in the College of Education. Brian gave me a lot of useful tips in the early days, and we conducted an initial training, "Introduction to Weblogs and Blogging," for faculty, staff and students in the College of Education. Brian eventually discontinued the College of Education blog: I think he found his efforts to be a little bit premature, since faculty in our college were still largely unaware of blogs, and certainly did not subscribe to RSS readers.
Of course, the entire tone and feel of the blog changed soon after Penny Richards submitted her first post [Saturday, Apr 16, 2005] and we got serious. Keep posted - we look forward to celebrating our 'anniversaries' later in the spring.
What triggers these reflections? In this month's Disability Blog Carnival #7, Penny notes several comrades including Gimpy Mumpy who have set their keyboards aside and directed their energies otherwise. And now word emerges that one of the post prolific bloggers of the past three years, Michael Berube, is following suit. His blog archives will remain, but active blogging ceased as of Tue, Jan 9 2007. Fittingly enough, given the critical political tenor of many of his posts, Michael signing off with a YouTube with the famous atomic bomb finale from Dr. Strangelove, under the moniker "I told you it was going to happen."
Don't worry - we don't show any signs of flagging yet.
When Disability Studies, Temple University made its debut nearly 2 and 3/4 years ago with this humble post, blogging just beginning to hit the big time, and a number of educators in disparate fields, but particularly in literary fields such as English, where turning to blogs as a way to reach a broader audience and to facilitate group work. Blogs chronicling the disability experience, let along the field of disability studies, were in their infancy. Much of the interchange in the field of Disability Studies took place through the medium of listserves. A tremendous amount of energy continues to be devoted to discussion on listserves such as Disability-Research out of Leeds, and DS-HUM (Disability Studies in the Humanities) and SDS (open to members of the Society for Disability Studies) in the United States, that operate as members-only clubs. The content of these often exciting and useful exchanges is lost to the much broader community of non-subscribing Disability Studies acolytes. In my own modest way, I set out to change that.
Perhaps the credit for getting DS,TU off the ground should go to Lydia Fecteau, an adjuct faculty member at The Richard Stockton College of New Jersey : she created an excellent blog for her Disability and Literature course that is still in our blogroll, and shared the interesting blogs created by students at her school. Or perhaps credit should go to a reference librarian here at Temple University, Brian Schoolar, who started posting his news to a page directed at faculty in the College of Education. Brian gave me a lot of useful tips in the early days, and we conducted an initial training, "Introduction to Weblogs and Blogging," for faculty, staff and students in the College of Education. Brian eventually discontinued the College of Education blog: I think he found his efforts to be a little bit premature, since faculty in our college were still largely unaware of blogs, and certainly did not subscribe to RSS readers.
Of course, the entire tone and feel of the blog changed soon after Penny Richards submitted her first post [Saturday, Apr 16, 2005] and we got serious. Keep posted - we look forward to celebrating our 'anniversaries' later in the spring.
What triggers these reflections? In this month's Disability Blog Carnival #7, Penny notes several comrades including Gimpy Mumpy who have set their keyboards aside and directed their energies otherwise. And now word emerges that one of the post prolific bloggers of the past three years, Michael Berube, is following suit. His blog archives will remain, but active blogging ceased as of Tue, Jan 9 2007. Fittingly enough, given the critical political tenor of many of his posts, Michael signing off with a YouTube with the famous atomic bomb finale from Dr. Strangelove, under the moniker "I told you it was going to happen."
Don't worry - we don't show any signs of flagging yet.
Friday, January 12, 2007
Ashley Treatment continued ...
Dear blog posters (whether I agree with you or not!)
You will want to check out “Paula Zahn Now” tonight. They will be featuring a discussion of the “Ashley Treatment,” including another family that supports Ashley’s parents. Source: http://benandbenniewaddell.blogspot.com
Interested in your thoughts. I may not be able to blog mine until Sunday. MD
PS: Thanks for the contributing medical student who suggested read the original medical journal article on the procedure. I am tracking it down, but in the meantime you may to read the views of the author Dr. Douglas Diekema, recently interviewed by CNN. He headed the ethics panel that evaluated the parents' request back in 2004.
You will want to check out “Paula Zahn Now” tonight. They will be featuring a discussion of the “Ashley Treatment,” including another family that supports Ashley’s parents. Source: http://benandbenniewaddell.blogspot.com
Interested in your thoughts. I may not be able to blog mine until Sunday. MD
PS: Thanks for the contributing medical student who suggested read the original medical journal article on the procedure. I am tracking it down, but in the meantime you may to read the views of the author Dr. Douglas Diekema, recently interviewed by CNN. He headed the ethics panel that evaluated the parents' request back in 2004.
Friday, January 05, 2007
Sigh.
I didn't want to post about this story.
I don't make a secret of being a parent, but I'm not a momblogger and I only rarely mention my kids here (I think). However, the last 24 hours have seen a lot of pundits saying "Unless you have a child like this, you can't understand..."
Okay then. I have a child "like this": my son is eleven, on the verge of puberty (we presume), doesn't walk, doesn't talk, etc. etc. He's very small (under 40 lbs. right now), but that could certainly change in the next few years; he has a well-controlled seizure disorder, but that too could change in the next few years. When his cognition is given a number, it's given in terms of months, though I don't put much emphasis on that kind of assessment. We carry him a lot. He's hard to carry. He's not going to get easier to carry. The day may come when we need help.
And still, I don't understand. I don't understand removing healthy tissue and functioning organs--it's hard enough to schedule and endure a surgery when it can't be avoided. Puberty is not an extraordinary event. Growing is not a sin or a disease--it's what kids' bodies do, even disabled bodies. When we need help, we'll get it, somehow--but my son's body is fine as it is.
And one more thing: my son is no angel, no doll, no pet. He's a kid. He's a person. He's a human being. Treat him that way.
Postscript: Stories about parents who (quietly) find doctors to do appalling things to their disabled children do circulate among parents and teachers (and I imagine doctors and nurses and other professionals). I remember hearing long ago about a family that had their kid's vocal cords surgically altered because the kid couldn't talk, and the noises he (she?) did make were unpleasant to them. You hear stuff like this, sometimes. I generally hope and pray that they're urban legends, or at least distorted reports of something less troubling; when I heard about the Ashley case about a year ago, I wanted to believe it was one of those. But when a family puts up a website to explain their decision, that hope is surely lost.
UPDATE: Two more mothers who are speaking up--and they're already doing the heavy lifting:
Nufsaid
Dream Mom
and Thirza has an important point to make at Fit of Pique: "Not all caregivers are nice people." Too true.
I don't make a secret of being a parent, but I'm not a momblogger and I only rarely mention my kids here (I think). However, the last 24 hours have seen a lot of pundits saying "Unless you have a child like this, you can't understand..."
Okay then. I have a child "like this": my son is eleven, on the verge of puberty (we presume), doesn't walk, doesn't talk, etc. etc. He's very small (under 40 lbs. right now), but that could certainly change in the next few years; he has a well-controlled seizure disorder, but that too could change in the next few years. When his cognition is given a number, it's given in terms of months, though I don't put much emphasis on that kind of assessment. We carry him a lot. He's hard to carry. He's not going to get easier to carry. The day may come when we need help.
And still, I don't understand. I don't understand removing healthy tissue and functioning organs--it's hard enough to schedule and endure a surgery when it can't be avoided. Puberty is not an extraordinary event. Growing is not a sin or a disease--it's what kids' bodies do, even disabled bodies. When we need help, we'll get it, somehow--but my son's body is fine as it is.
And one more thing: my son is no angel, no doll, no pet. He's a kid. He's a person. He's a human being. Treat him that way.
Postscript: Stories about parents who (quietly) find doctors to do appalling things to their disabled children do circulate among parents and teachers (and I imagine doctors and nurses and other professionals). I remember hearing long ago about a family that had their kid's vocal cords surgically altered because the kid couldn't talk, and the noises he (she?) did make were unpleasant to them. You hear stuff like this, sometimes. I generally hope and pray that they're urban legends, or at least distorted reports of something less troubling; when I heard about the Ashley case about a year ago, I wanted to believe it was one of those. But when a family puts up a website to explain their decision, that hope is surely lost.
UPDATE: Two more mothers who are speaking up--and they're already doing the heavy lifting:
Nufsaid
Dream Mom
and Thirza has an important point to make at Fit of Pique: "Not all caregivers are nice people." Too true.
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