tag:blogger.com,1999:blog-8466691337834051176.post5575459705464599439..comments2024-03-01T03:37:20.420-05:00Comments on I'M SOMEWHERE ELSE: why is arguing with you the only self-advocacy that counts?Amanda Foresthttp://www.blogger.com/profile/04200794053287551087noreply@blogger.comBlogger11125tag:blogger.com,1999:blog-8466691337834051176.post-72607716353555431262011-09-29T13:30:58.555-04:002011-09-29T13:30:58.555-04:00I can't ask for help. I mean. . . I CAN, of c...I can't ask for help. I mean. . . I CAN, of course. . . it just makes me feel extremely uncomfortable. I feel like it puts me at their mercy to some extent. It's the old "Godfather" exchange to some extent. . . yeah, sure I can do you a favor, but one day I'll call on you, and when I do, you can't refuse the payback. <br /><br />Meh.<br /><br />Really enjoyed the Bad Brains blog too.Jimhttps://www.blogger.com/profile/11538573774184028004noreply@blogger.comtag:blogger.com,1999:blog-8466691337834051176.post-36612142070953717342011-08-22T19:29:38.485-04:002011-08-22T19:29:38.485-04:00(not to say, obviously, that all of these things w...(not to say, obviously, that all of these things were done in this particular case. but they sure do happen.)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8466691337834051176.post-56618932725308162092011-08-22T19:27:58.333-04:002011-08-22T19:27:58.333-04:00oh I wouldn't say parents of those who are non...oh I wouldn't say parents of those who are nonverbal. I'm not denying Schuyler RH in particular is more severely disabled than I am, especially when it comes to speech. But I think parents who do the can vs. can't self-advocate thing, and/or "you're certainly a very unusual disabled person (read: your life is awesome! stop talking!)," have kids with a wide range of abilities. You can present pretty much anyone as having a horrible life and/or being unable to self-advocate because those are two INCREDIBLY vague things.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8466691337834051176.post-87321802189653525682011-08-22T13:02:48.799-04:002011-08-22T13:02:48.799-04:00You made some good points in this post. There is a...You made some good points in this post. There is also a tendency for parents of those who are non verbal to think that if you can self-advocate, things are not that bad for you or there is nothing wrong with you when that is not the case.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8466691337834051176.post-53037678841933386632011-08-20T22:32:05.895-04:002011-08-20T22:32:05.895-04:00Thanks Rob! Are you Zoe's dad?Thanks Rob! Are you Zoe's dad?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8466691337834051176.post-72952690802770557002011-08-20T18:33:33.985-04:002011-08-20T18:33:33.985-04:00Thank you for pointing out that "self-advocac...Thank you for pointing out that "self-advocacy" isn't a binary, can or can't, does or doesn't issue, and that there are an enormous number of ways that a person can, or cannot, do this.Robhttps://www.blogger.com/profile/05681788194426093337noreply@blogger.comtag:blogger.com,1999:blog-8466691337834051176.post-21914912201356712892011-08-18T18:33:21.735-04:002011-08-18T18:33:21.735-04:00Hi Pancho,
Thanks so much for saying all that, I ...Hi Pancho,<br /><br />Thanks so much for saying all that, I really appreciate it.Zoehttps://www.blogger.com/profile/11415989880473044852noreply@blogger.comtag:blogger.com,1999:blog-8466691337834051176.post-44141309293013782042011-08-18T12:07:52.310-04:002011-08-18T12:07:52.310-04:00Zoe- I regularly read your blog and have been for ...Zoe- I regularly read your blog and have been for a while. Since you don't get a lot of comments I didn't think to watch for comments after reading your post... and I liked that post. It was almost like someone else eloquently expressing MY opinions.<br /><br />I don't know. I'm sorry you have to deal with this and I am thankful for your writing, even though I don't think I've ever said anything to you. <br /><br />That comment thread is a mess and I am very glad I missed it because if I had seen it I would have been involved and I would still be pretty upset.<br /><br />I relate to a lot of what people are saying about failing to do the "right" kinds of (self)-advocacy and being upset about that. But I do what I can, we all do.Panchohttps://www.blogger.com/profile/14695297748121188470noreply@blogger.comtag:blogger.com,1999:blog-8466691337834051176.post-41661350230515271112011-08-18T04:45:09.724-04:002011-08-18T04:45:09.724-04:00I had thoughts about that comment thread, too. Alo...I had thoughts about that comment thread, too. Along a different vein than this, though. I'll see if I can manage to string it into a coherent post at some point.<br /><br />This post of yours covers an aspect that did pop into my mind, but that I did not feel capable of writing about.<br /><br />I always end up feeling guilty for not being able to do more things, when I can do so much (except for those things I can't do). <br /><br />Your bullet points - almost all of them apply to me as well, and as much as I do like to blog and I do feel empowered by sharing my experiences online, I just cannot use a blog post to apply for disability aids. Such things must go through the "proper channels" which I have huge troubles navigating. <br /><br />So what use is this online communication which the parents call self-advocacy, when none of it is gonna get me the help I need, nor make my situation understandable to the people around me.<br /><br />I just got a new aide. The third in less than a year. My first was utterly awesome, but she quit her job, and so a new must be assigned to me. Met her for the first time yesterday. She seems okay, but now I have yet another "getting to know" process that is so exhausting. Because she needs to know teeny details about me, otherwise she cannot help me get the help I need - cannot advocate for me. And I need her to help me like that, because most of the time, I can't advocate for myself.<br /><br />And most of the time being able to write a well-worded blog post but not to ask for the help I need, makes me feel like an utter failure. And having those disability-appropriating parents tell me (and/or people like me) that I can clearly self-advocate makes me feel so erased I hardly even have words for those emotions.<br /><br />Thank you for writing this post.Jemima Aslanahttps://www.blogger.com/profile/01640917506942166322noreply@blogger.comtag:blogger.com,1999:blog-8466691337834051176.post-5654052514027185612011-08-18T02:38:35.289-04:002011-08-18T02:38:35.289-04:00Aw, the link to Amanda Baggs' article doesn...Aw, the link to Amanda Baggs' article doesn't work. I've actually been looking for it for a long time... very upsetting.<br /><br />Thanks so much for responding to this because the our-children-can't-self-advocate angle was one that really disturbed me, but I was having a hard time tracking and responding to all the different topics that were getting brought up on that thread.<br /><br />Also -- if you need a script for asking people for references, Julia and I actually made one a couple weeks ago.Zoehttps://www.blogger.com/profile/11415989880473044852noreply@blogger.comtag:blogger.com,1999:blog-8466691337834051176.post-49336537563432622732011-08-17T22:47:41.503-04:002011-08-17T22:47:41.503-04:00i think what non-disabled people consider screamin...i think what non-disabled people consider screaming and smashing is incredibly powerful self-advocacy. it is for me, anyway. and i think it's up to the individual to decide how to self-advocate? like, for me- pissing allistic people off and challenging ideas about autism and bigotry is self-advocacy. that may not be another autistic person's self-advocacy but it's a really personal, really powerful thing.Anonymousnoreply@blogger.com