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Thursday, January 24, 2008

30th Disability Blog Carnival: What professionals need to know.

I got the idea for this carnival in thinking about the sensitivity and understanding or lack of both by medical professionals regarding what a patient’s life is really like. In my experience therapists, doctors, teachers, school psychologists who have shown true empathy, a willingness to listen, and respect for me and for Ellie have, sadly, been in the minority. I wish more professionals would try to educate themselves about the people they are trying to help.

So that is where I started. But as you will see there are many more places this sentiment extends, including fashionista sensibilities about wheelchair design. I have learned so much from the multifaceted diversity of thought in this carnival. Thanks to all contributors for making this carnival so insightful and well rounded!!! Enjoy!
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The next blog carnival is on 14th Feb with submissions due the Monday before. The topic/theme is "Superman". Please e-mail submissions to emma@wheelchairprincess.com or use the disability blog carnival submission form.
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Tokah kicks off this carnival with the post, People Are People First that is such a huge underlying theme in many of the posts that follow. Tokah you are so right. GREAT post.

Emma follows with this very explicit and wonderful post about carers who come to her home. It’s a great post because she goes into detail about what works and what doesn’t. Thanks Emma for this post. I wish every person who has ever come to our home and everyone who goes into anyone’s home as a carer or therapist could read it.

Cheryl gives us, What I’m Teaching Professionals. This is another great blog that relates to Emma’s experience so well. Here is an excerpt:

“My second thought? I would not want any of you working with my (fictitious) disabled child. In fact it scared me half to death to think that people being trained in the human services are left to go out into the real world with no real knowledge of disability whatsoever.”

Wheelchair Dancer gives us What Every Body Worker/PT Needs to Know. I agree with one of her commenter that this should be made into a poster or hand out and distributed widely.

Jodi Reimer discusses the power of a professionals words and attitudes in One Parent’s Perspective. This is another must read for professionals. Here is an excerpt:

“Because of your position and our vulnerability your words, and more importantly, your attitude, have the ability to ruin my day...or even change the course of my child's life.”

Ruth over at
Wheelie Catholic takes us into a restaurant and offers up a very thoughtful detailed list of advice for waiters and waitresses in Dear Waiter/Waitress. I was stunned by her experience in the restaurant and if she had published the name of it, I would definitely boycott the place for life.

David, over at
Growing Up With A Disability offers up two posts that fit this topic nicely. The first is an interview he did with Brian about Control. The second post is one I have remembered quite clearly since the first time I read it back in April. He quite clearly, much like Emma outlines the Top 10 Tips for Service Providers. It’s another excellent blog post on this topic.

Josh Winheld writes about his experience in dealing with a customer service representative at social security in Adding Insult to Injury. This is a great post that may make your blood boil on Josh’s behalf.

Tina Cohen, K.C.’s mom over at
Autism Schmatism! writes something we can all learn from in, I Have Heard It All. Here is an excerpt:

“The old man said this, "where's his wheelchair!" Then "the mouth" I sometimes call him said, "you dummy, disabled doesn't always mean your legs!" I squeezed Big Brothers hand to let him know to shut it.”

Media Dis&Dat blog in
Man Without Legs Photographs Staring Around the World reports on the adventures of Kevin Connolly and his experience with photographing over 32,000 people staring at him because of his differences. I also recommend the 20/20 interview of him found here. Connolly’s photos wordlessly mirror people’s attitudes in some ways, much better than words could convey.

Steve over at
Planet of the Blind gives us Who’s Who? This post takes the perspectives and twists them on their ear for our benefit. Great post Steve! He also writes, Make It Strong Please. Here is a quote: “Blindness isn’t a calamity unless the "professionals" make it so.”

Ettina at
Abnormaldiversity gives us this very insightful post about Counselors for Neuroatypical People. Here is an excerpt:

“There are two kinds of problematic counselours when it comes to me being autistic - those that think they know autism and those that don't know anything about autism. The first group is by far the worst.”

The next post is one of the best and most complete essays I have read on the topic of access. I will be book marking this and reiterating it in the future I have no doubt.
NTs Are Weird discusses Who Benefits from Accommodation? “Something planners need to know: accessibility makes places better for everyone, not "just" for disabled people”

Lilwatchergirl clarifies the balance of power and so much more regarding her PT’s in What I Will Not Do OR to those who are there to make me 'better'

"Because I have choices and autonomy and a mind of my own"
--a great, fierce list of basic rules

Diary of a Goldfish writing for the BBC’s Ouch! Gives us The Deadly Sins of Wheelchair-pushers. Anyone in a position to push a manual chair should know and avoid these “deadly sins”.

Liz Henry gives us
My Evil Mastermind Futuristic Wheelchair Golf Cart Thing. Just go read it! Great post Liz!

Elizabeth McClung over at
Screw Bronze! has submitted this excellent post, “Fight? Or Resist?” about the language used around “fighting” a disease or disability. GREAT, great post. Here is an excerpt:
“…Lupus, CFS, MS, Parkinson’s, ALS, Huntington’s, CBD, Rett Syndrome, Lymes, Leigh’s Disease, MND’s, Friedreich's Ataxia, and those host of other diseases of which the idea “to fight” seems humiliatingly ludicrous…”

Jacqui at her new community blog,
Equal Not Special, which I highly recommend you visit gives us her top 10 list of what professionals should know. Here is my favorite off this list:
“4. Just because you say that Moo won’t do things, doesn’t mean that he won’t. Doctors/health professionals can be wrong.”


Nick in “Where Have I Been?” shares his adventures in the virtual world of Second Life. He calls it “the next frontiere for disability culture!” All I can say is Wow and Who Knew? Made me want to go there right now and check it all out, except that I have to get this blog carnival out! Nick gives some great resources there from his experiences. So interesting! Thanks Nick.

Report From a Resident Alien gives us this thoughtful post titled, “
Sometimes I Wish I Weren’t Autistic” about accepting her Autism. Here is a quote: “Autism's caused me trouble; but it's part of my life, part of my personality. Why not be proud of who I am? Why not, at the very least, accept it and work my life around it, rather than banging my head against it?”

Lastly,
This Is How I Swim rounds out the carnival very directly with this post titled, What Professionals Should Know. Here is an excerpt:

“So if I could, I would tell all educational professionals that we have a responsibility to educate everyone who walks in our doors. In fact, that really needs to be said to pre-professionals and then repeated every year until retirement. The problem is that I could say that with words, but the institution of special ed, by it's very existence, tells them that I'm wrong. Bit of a sticky wicket. So what all professionals should know is that is that…”

..And check out this last, LATE entry over at Deaf Mom's blog. It's worth the read!!!

17 comments:

Tokah said...

Thanks for hosting!

David said...

This is great Kathryn! Thanks!

Penny L. Richards said...

Lovely collection here, Kathryn--some newer links too--thanks for hosting this edition. Now, to start thinking about "Superman"...

Penny L. Richards said...

Oooh, but this is #30, I believe?!?! I called the last one #29!

Karen said...

Great carnival, thanks for hosting! Mine's up at: www.deafmomworld.com.

Jim said...

I found you through another blogger and I glad I did. I am adding you to my list of "bloggers" for me to read.

I am hard of hearing (completely deaf when not wearing hearing-aids) so I was able to hear almost "normal" and I am thankful for today's technologies. I also have Multiple Sclerosis. My blog talks about my experiences with disabilities in all aspects of life.

Thank you for sharing this.

Jim

Lisa said...

This is excellent stuff, Kathryn. For some reason I never am on the ball with the disability carnival stuff. And I just had a good one for this. Just yesterday I spoke to a very nice woman in a capacity not related to her job, which was grant writing for a child residential facility, and I was just shocked by what she didn't know and by how unindoctrinated she was into disability ettiquette and stuff. I could go on and on, but she is not a professional of mine (she goes to our church) and so I feel I can't write about it. But I almost crawled under the table as she did the "You're SO Remarkable" stuff, seemed to go off on cure, cure, cure and how we must be on pins and needles waiting for one...and the best one that had my jaw on the floor (this hit me, but maybe not others?)

She had visited D in the hospital. D who has MRSA, the infection that is in all the news lately. D who has a big stop sign on his door that says to gown and glove and mask before entering...And she WORKS in this hospital...albeit not in direct care. And she asked me what the stop sign meant. And then I explained it and she asked me what MRSA was and why universal precautions were needed. I about dropped to the floor. LAY people know this stuff, right? I worked at a med center yet in a different building than any sort of direct patient care and I had to train on universal precautions. It made me think that every one of those kids in that residential facility must have MRSA by now.

Oh! And then she had never heard of post polio. She actually thought that the polio vaccine cured polio and that their aren't a zillion people still alive out there living with the disabling effects of polio.

I mean, I was floored! This woman has an MSW. I could have forgiven some of this if she didn't work right in a freakin' hospital with freakin disabled kids in a freakin godforsaken residential facility... but MY GOD! I could list 20 other things she had no idea about but I won't waste any more of your blog space.

It made me think anyone without a disability who works in the field in any capacity should be required by law to get an additional degree in Disability Studies.

Sheesh!

(Thanks for letting me vent a little here! I couldn't write this on my own blog. She really was trying very hard to be nice and helpful, but, just...wow! The stupid, it burned!)

terriblepalsy said...

Great job!

Kathryn said...

Thanks everyone.

Jim - thanks for the multiple comments you left on the different posts!

Lisa- report her! call up her boss. That is some serious incompetence!!

Ruth said...

Thanks for hosting - really enjoyed this carnival!

Casdok said...

Wow! Thats my reading for the evening!
Thank you!

Maddy said...

thank you for hosting - fabulous idea and just ready for the weekend! Perfect timing.
Best wishes

Terri said...

I just discovered your blog and blog carnivals. I shared this carnival with the Association of University Centers on Disability trainees listserv. They are graduate and post-graduate students in fellowships at universities around the country who intend to work with people with disabilities. This carnival should give them some new perspectives.

Thank you!

Kathryn said...

Thanks everyone. Glad you like the carnival!

Emma the Wheelchair Princess said...

Thanks for doing the carnival Kathryn! It's great. Now if only I could find time to read more of it...

Oh and if I could go back to my entry in the carnival I would add in the fact that honest and apologies which are actually meant can go a long way... I learned that today, http://wheelchairprincess.com/blog/2008/01/26/its-my-fault-im-really-sorry/

lilwatchergirl said...

This is a great carnival - some really thought-provoking entries. Thanks! I'll link to it over at my place.

Daniel said...

This is a wonderful blog! I hate to admit it, but I am a "professional" who has no experience whatsoever with disability, and am charged with building a new health center for the developmentally disabled. Would anyone be willing to share some inside perspectives with me? Thanks!

Dan