tag:blogger.com,1999:blog-35743239.post7907234437989721029..comments2024-03-19T07:36:33.915-04:00Comments on Of Battered Aspect: Learning Stalled (Please Read)Dave Hingsburgerhttp://www.blogger.com/profile/11918601687946534172noreply@blogger.comBlogger16125tag:blogger.com,1999:blog-35743239.post-16152816884163658542012-04-24T18:58:19.289-04:002012-04-24T18:58:19.289-04:00My 14-year-old daughter with Down syndrome would h...My 14-year-old daughter with Down syndrome would have SHRIEKED at you. Of course, she would never have failed to lock the door in the first place.Katrina Stonoffhttp://stonoff.comnoreply@blogger.comtag:blogger.com,1999:blog-35743239.post-70309831651765995542012-04-20T14:19:24.007-04:002012-04-20T14:19:24.007-04:00Peneople, if you are in that situation re: hospita...Peneople, if you are in that situation re: hospital gown, ask for another and then wear it like a coat, that way both sides are covered. Been there, done that!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-35743239.post-1914242494499771612012-04-20T06:56:49.574-04:002012-04-20T06:56:49.574-04:00I don't think this is specific to people with ...I don't think this is specific to people with intellectual disabilities, either. I've met adults who've been physically disabled from birth who can toilet (including closing doors, etc.) independently, but never learned that it's important to close the door. I don't think it helps that even outside of toileting, the medical world is not set-up to support privacy. I have friends who as adolescents were forced to walk down hospital hallways in their underwear to do gait studies (couldn't wear shorts because the doctors wanted to see hips). <br /><br />Not to mention that everyone knows what hospital johnnys are like. I was in the hospital last August with a surgery that meant that I really couldn't wear my own PJs/nightgowns that closed up the back and it was pure luck that I ended up in the one fully private room on the post-surgery ward. Otherwise, the first day or so I was allowed to use the bathroom, I'd have been flashing my backside to my roommate and any of their visitors. Now, to be fair, any time I had a nurse or aid with me, they worked hard to hold the back closed while I was walking, but I doubt that's the rule in most places.Penelopehttps://www.blogger.com/profile/06266694020145632041noreply@blogger.comtag:blogger.com,1999:blog-35743239.post-82973802264235185482012-04-19T22:30:23.707-04:002012-04-19T22:30:23.707-04:00This and yesterday's post address something im...This and yesterday's post address something important that (judging by the reactions) is not often discussed.<br /><br />I don't at the present time have the responsibility for teaching toileting skills to anyone and don't anticipate this changing for the foreseeable future. But as a point of curiosity:<br /><br />1. How does one teach a sense of privacy/modesty without also teaching a sense of shame about the body?<br /><br />2. Hypothetically speaking: suppose you were a staff person working in an environment where most of the other staff would not / do not take these issues seriously even if someone tries to talk to them about it ... you are perhaps new to the field (and thus others with more experience aren't prepared to listen to your new fangled ideas) ... or perhaps you're experienced, but others still don't listen because they see the issue of modesty as just a silly "thing" you have that isn't (in their perspective) that important. You want to teach a sense of privacy/modesty, but everybody else undermines your attempts because they still will not take these issues seriously. You try to have them close the door, other staff still just barge in or whatever. Is there a way forward in this kind of situation? It seems to me that there would need to be a commitment among the majority of staff, family, etc. around the person with intellectual disabilities to teaching a sense of modesty/privacy or else it won't really "take".Andrea S.http://gdrl.orgnoreply@blogger.comtag:blogger.com,1999:blog-35743239.post-75519761347441550722012-04-19T19:05:28.131-04:002012-04-19T19:05:28.131-04:00Oh Dave absolutely! I think Kristine's point ...Oh Dave absolutely! I think Kristine's point about how personal care is dealt with in classrooms is so valid.<br /><br />One of my most important memories was when I was given back my dignity by an auxilary nurse following an operation. After been treated as a piece of meat needing fixed she was given the task of giving me a shower but insisted on the shower curtain being drawn and my being covered up. Oh the return of dignity! It was something tangible and so valuable.<br /><br />Why should adults with life long disabilities be treated any differently?<br /><br />p.s. I am reading a book based in Toronto and I am enjoying recognising all the street names from your blog. When I read of Murdoch walking down a street I am also able to think of you wheeling your way down it as well.Myrriennoreply@blogger.comtag:blogger.com,1999:blog-35743239.post-14087593847781991752012-04-19T17:59:12.190-04:002012-04-19T17:59:12.190-04:00Becca, I would love to speak there but haven't...Becca, I would love to speak there but haven't ever been asked. I've loved my experiences with the World Down Syndrome Congress and with speaking for both the Canadian and Irish Down Syndrome Societies, but I've never been invited to speak Stateside. Too bad, I love Washington, DC.Dave Hingsburgerhttps://www.blogger.com/profile/11918601687946534172noreply@blogger.comtag:blogger.com,1999:blog-35743239.post-24088635038548489002012-04-19T17:49:05.627-04:002012-04-19T17:49:05.627-04:00Such a good point and reminder you make, Dave. Th...Such a good point and reminder you make, Dave. Thank you so much. We're at a point right now where we're really trying to stop our daughter from hugging everyone. We haven't even begun to start teaching bathroom privacy, because most of the time one of us is sitting there with her (except when she slams the door on us and demands that we stand outside - I suppose she taught herself that, and for that I should be pleased). How come you're not speaking at NDSC this summer in DC??? I was so hoping to see your name on the lineup - I know there are a lot of people there who would benefit greatly from hearing you speak about these things...Beccahttps://www.blogger.com/profile/14963099760885760598noreply@blogger.comtag:blogger.com,1999:blog-35743239.post-4732673532714070402012-04-19T15:08:20.488-04:002012-04-19T15:08:20.488-04:00I recently toured a middle school as a possible pl...I recently toured a middle school as a possible placement for my son who has CP. One of the things that worried me was the comment that they do group toileting-- rationale being that "these kids learn from each other". So no closed stalls, no privacy, just a row of urinals and an open toilet in a large room-- 8 to 10 kids to go at one time. None of the parents touring was comfortable with this-- but our concerns were brushed aside with "this is preparing them for the real world, outside your homes." Thanks for a timely, practical, and wise pair of posts on bathroom skills.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-35743239.post-87124630367405460972012-04-19T11:56:53.595-04:002012-04-19T11:56:53.595-04:00This is why your "ethics of touch" lectu...This is why your "ethics of touch" lecture is so important. I saw it years ago and it made a huge impact in my career. <br /><br />KHAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-35743239.post-32685775809613683882012-04-19T11:27:19.590-04:002012-04-19T11:27:19.590-04:00Dear Dave:
This discussion is so very much needed...Dear Dave:<br /><br />This discussion is so very much needed. I like John's idea of having new staff read the posts.<br /><br />I am stuck though. The staff ***forgot*** this woman was in the bathroom?!?!?! I am having trouble getting past that.<br /><br />ColleenColleennoreply@blogger.comtag:blogger.com,1999:blog-35743239.post-10346507680827760542012-04-19T11:24:28.393-04:002012-04-19T11:24:28.393-04:00It's very true.
A year ago when I was in the ...It's very true.<br /><br />A year ago when I was in the hospital for a week because a piece of placenta had been left in me after the homebirth of my daughter (who has Ds), I was shocked by the careless disregard for my person, shown by hospital staff. I'd be on a table, screaming in pain, with that stupid hospital gown flapping open, naked underneath but all exposed as it was flapping open. I wanted to be covered, wanted some dignity, wanted the pain to stop and the said I was being "difficult" and continued to treat me roughly.<br /><br />And so. It's easy for me to imagine what goes on with those with intellectual disabilities. In hospital/medical environments in which people are so much slabs of flesh, nothing more. <br /><br />ps. If you guys ever come to SF again, let me know! I'd LOVE to meet you!Meriahhttps://www.blogger.com/profile/13813502666724137451noreply@blogger.comtag:blogger.com,1999:blog-35743239.post-74708369290483219862012-04-19T08:22:13.028-04:002012-04-19T08:22:13.028-04:00Between Urine Nation (last post) and this one, you...Between Urine Nation (last post) and this one, you have outlined a charge we have as family members, advocates, allies and supporters of people with disabilities.....privacy is not just about modesty of body....it is CLEARLY a safety issue for people who have not been taught about the impact of their private parts on the world around them. Also, people who support people must realize the impact of sexual victimization in general.<br /><br /> I know several men who have a pedophilia conviction because they did not understand that exposing their private parts to a child is illegal. One instance was in a highway rest stop bathroom! There was more than likely no ill-intent for several of these men, but they did not realize the "power of the parts". <br /><br />I am going to take these posts and utilize them in Orientation sessions with incoming staff to my agency. It is the newbies who will more likely see the MANDATE to teach people with disabilities to take privacy and indeed be modest....<br /><br />Thanks for highlighting this and I am of the great belief that as sensitive as this subject matter is, we are obligated to teach staff to teach people this basic dignity and safety skill.John R.https://www.blogger.com/profile/09855575688523179265noreply@blogger.comtag:blogger.com,1999:blog-35743239.post-79407072930734985642012-04-19T07:59:16.512-04:002012-04-19T07:59:16.512-04:00Thank you for continuing to raise awareness about ...Thank you for continuing to raise awareness about important issues. Me, I'm horrified that a staff person could "forget" about a person in the toilet.Melissahttps://www.blogger.com/profile/11131661171958525491noreply@blogger.comtag:blogger.com,1999:blog-35743239.post-63516669626187047542012-04-19T02:59:26.608-04:002012-04-19T02:59:26.608-04:00THANK YOU for bringing these topics up! It bothers...THANK YOU for bringing these topics up! It bothers me so much when special ed teachers/assistants are changing their students, right there un the classroom. Or openly discussing their private info for anyone to hear. I have my own traumatic memories of school bathrooms. I always needed assistance, so the school would provide an aid to help me. But they also decided that a million back-up assistants also needed to be trained to help me, just in case. And a bunch of nurses and specialists-in-I-don't-know-what needed to observe and be aware of the "procedure." There were times when 6 other people were all crowded into the bathroom with me, watching me pee. Or try to! Sometimes I just couldn't perform for a large audience, and the rest of my day would be looooong and miserable! As a very shy kid, it never occurred to me that I could say NO to that kind of treatment. The fact is, society doesn't teach people with disabilities that our bodies merit respect and dignity, and the bathroom is just one place where it's glaringly obvious.Kristinehttps://www.blogger.com/profile/06868874343026873104noreply@blogger.comtag:blogger.com,1999:blog-35743239.post-55081186588334599412012-04-19T02:20:22.738-04:002012-04-19T02:20:22.738-04:00I've commented on earlier blogs about the impo...I've commented on earlier blogs about the importance of education - and you have outlined a glaring example. I have found caregivers get so comfortable with the care they give that they have become not only insensitive to people around them (like the food court) forgetting those that do not live the lifestyle - and worse, the actual person in care. <br /><br />I agree - it is not "cute" - it is a part of educating and preparing those that need a little more encouragment than others to embrace their whole self - physical, mental, social, spiritual and sexual - and more!Thank you so much for broaching the often overlooked subject.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-35743239.post-47944462929135485482012-04-19T01:21:01.680-04:002012-04-19T01:21:01.680-04:00Dave,
here is a little story to that from me...:
...Dave,<br /><br />here is a little story to that from me...:<br /><br />I hate to be touched and it is very difficult to me to show my body without clothes. I am not able to sleep without apropriate clothes like undies and a pyjama. It is just impossible.<br /><br />When I was small I hated to be examined by doctors. It got more unconfortable when I was a teenager. But somehow something changed till today. I got used to undress before a doctor/or nurse. When exhausted and searching for medical help sometimes facts like a certain kind of shamefullness get into the background for me for "getting rid of that excruciating pain a soon as possible". <br /><br />I got so used to undress in front of the "whitecoats" that something funny happend to me that let the fact come back into my mind with a heavy thud. <br />In germany we have a certain kind rehabilitation clinic where you go after a long period of illness or after a mayor surgery to learn the skills to live at home with your disease. For instance after a heart attack and a surgery you have to learn about nutrition and cardio sport. <br /><br />I am in such a clinic for three weeks for almost every year to clean my lungs and just relax for my relaitivly stressfull work.<br /><br />One time I had to go into the nurses room to get a long period echocardiogramm. And I had to sit down and simply started to undress for the procedure when a very concerned nurse rushed in and told me to stop. Turns out that I haddned noticed, that the unit was also the intensiv care unit for the clinic and had a window to a bed where an older man lay with another bout of heart attack. He nearly got another one from seeing me undress....<br /><br />You see sometimes even people with just a small part of long term illness tend to get into a kind of pawlowian dog effect.<br /><br />It is good to point it out. It is necessary to remember it. Not only for modesty but for protection.<br /><br />THANK YOU DAVE FOR BRINGING IT UP!!!<br /><br />JuliaAnonymousnoreply@blogger.com