Move over David Letterman and BBC Ouch, here come the bloggers!

Welcome to the 21st Disability Blog Carnival! Thanks to all who participated, and thanks to our fabulous organizer, Penny Richards. The topic for this carnival is Top Ten Lists, and people put together a variety of lists on a variety of topics. There were, however, some common themes to our lists.

Charles Darwin said, “Adapt or Perish." Well, we’re adaptable…

"If you hung with us long enough you might be too,” says Midlife and Treachery's I'mFunnyToo in her post, "Top Ten Reasons for the Able to Pay Attention".

Greg Traynor from Pitt Rehab talks about how his service dog helps him in "Top Ten Reasons to have a Service Dog". “Having a service dog empowers and enables me to become more independent."

Tokah, of From Where I’m Sitting, talks about places to go to find people who need to adapt their attitudes in "Top Ten Day" - antique sailing ship, anyone?

Speaking of sailing --- Elizabeth McClung, from Screw Bronze has learned a few lessons from a recent sailing trip - lessons about rudders, EMTs, and escaping an eavesdropping boy's sexual questions.

Information Removes Barriers. The more we can know and understand about each other, the more inclusive our society can be.

Over at Arthritic Young Thing, Zephyr offers strong, specific suggestions for supporting someone with Post-Traumatic Stress Disorder. She says, “Remember, it’s not about you.”

“Help me know what to expect,” and “tell me what ‘to do’, not ‘what not to do’,” says Jodi from Reimer Reasons in "Top Ten Ways to Support People With Intellectual Disabilities".

Andrea from Andrea's Buzzing About shares the "Top Ten Things About Having Face Blindness", like "less clutter around the house without a gazillion photographs of family relations."

In "How to Use The Sidewalk: Etiquette Tips for Walkies", Wheelchair Dancer explains some rules of the road. "Keep your coffee/purse/briefcase under control. I hate being hit in the face or scalded by Starbucks.”

Get the facts straight about Down Syndrome by reading Michelle’s post on Big Blueberry Eyes. Do you know: Down or Down’s? Which chromosome is affected? What’s the prevalence?

Pity the Fool.

Dave Hingsburger at Chewing the Fat has been wondering. "I wonder why people choose to work within the disability field and then resent the needs of people with disabilities."

Shawn, from Along the Spectrum, has some advice for the Autism Speaks Wright family, and for any of us consumed with pity, "Breathe in, breathe out, move on" and “When it starts to feel like everyone is against you, you are probably your own worst enemy.

Boxes, boxes everywhere; let’s dump the labels and see people as people.

The dad at Autism Bites shares his "Top 10 Snappy Answers To Annoying Comments". To “all he needs is more discipline, and he'll get the message,” he’d say, “yup, it’s true –if you give a child enough time outs, he’ll just stop being autistic. And if I speak French to you loudly enough, you’ll become fluent!”

Kathryn from Ryn Tales gets rid of boxes and sees the unexpected blessings of going to Holland. “I got to read a lot of poetry dissing the Dutch” and “the lines are shorter” and “my marriage has remained strong and wonderful.”

Charming BB's mom says, "My favorite phlebotomist is Cheryl." She shares her newly acquired language and more in "10 Things I Never Thought I'd Say."

You bet, and proud of it!

I wrote a post last April listing my tips for service providers - namely, respect, respect, and more respect. “You were not hired to be my minister, my parent or my buddy.”

Karen, an occupational therapy student and new blogger is stepping into a new world. She shares her love of her new career and learning through reading disability bloggers, “I realize, again via these blogs, that non-compliance has less to do with the client being stubborn and more to do with me not fully understanding their true needs.” Yes!! You are on your way.

People say the darndest things.

Paula Apodaca of E is for Epilepsy shares two lists full of incredibly dumb things people have said to her. “You have epilepsy so you must be retarded,” and from a doctor, “your mother was likely frightened by something while she was pregnant with you.”

“Try walking a little further each day” and other unhelpful advice makes up a list of "Top Ten things not to say to a PWME", at L’Ombre de mon ombre.

You’ll be amazed at what has been said to Jacqui of Terrible Palsy. Check it out in “Where did ya hide me M&Ms?" “He’s too good looking to have CP.” I have CP and I’m good looking – if I do say so myself! ;-)

AmpuTeeHee shares a really awful day full of insensitive stupidity, that starts with, “I know about you people” in "Tulips sure, but it’s not all wine and roses over here".

Ever wonder what it’s like to be Brad Pitt or Angelina Jolie? Ema from Rainmom and Life under the Umbrella shares the "Top 10 Reasons autism is like fame" – “having your past scrutinized to discover your sins” and other similarities.

"There comes a time when even the best advocates need a day off."

Having just completed the "On Holiday!" carnival, Andrea puts together "10 Things to do Differently when on holiday: Redefining vacationing.” It’s a good compilation gleaned from the last carnival and life experience. I’m ready for another vacation – where to, Andrea?

Food connoisseur Bridget Houlihan gives Top Ten advice on wheelchair friendly dining out. Did you know that wine bars and sports bars have lower tables that tend to work better for wheelchairs? Now that I am 21, I’ll have to check that out!

There’s still time for some summer reading. Jennifer Justice at Pedestrian Hostile puts together "Top Ten Disability Lit Titles", from Sulah to Cuckoo to A Christmas Memory to Jane Eyre.

Along the same vein, Penny Richards at Disability Studies, Temple U, shares "Ten Disabled Characters" from novels on her bookshelves. She gives a detailed description of the characters and how they fit into the story lines from logging camps to love and romance to music to wise parenting. Sounds like you have quite a library, Penny!

"Inclusion Mishap #9: Due to a faulty intercom, Mrs. Snippett thought the principl said, 'You have a new student coming to your classroom. He has disabilities. Do your best to elude him."

Laugh, laugh, and laugh some more.

“You know the hardest thing about having cerebral palsy and being a woman? It’s plucking your eyebrows. That’s how I originally got pierced ears.” Ouch blogger, Dave Hingsburger shares his favorite disability quotes.

Shiva at Biodiverse Resistance lists the "Top 10 Unintentional Anthems": “I Don’t Want Nobody to Give Me Nothing” and “Why?” and “Stepping Out of Line” are a few of the selections.

Also for the musically inclined, Ruth at Wheelie Catholic will have you singing along with hot tunes and classics, “I Left My Crutch in San Francisco” and “Quads Just Want to Have Fun” and “You are the Guide Dog of my Life.”

Do you know why “Normal People” wish they were disabled? Steve Kuusisto at Planet of the Blind has the answers. I hadn’t fully realized how jealous "they" were of my special powers, similarity to the Pope, and sneakiness. Thanks, Steve – this is good stuff to know..

Enough said.

Dream Mom reflects on the life lessons learned from having a child with a disability, “he taught me that children with disabilities are not children to be afraid of, but rather children to celebrate.”

Kristina Chew from Autism Vox shares the ways that she and her son Charlie are the same. Be sure to check out the comments as her readers then list the ways that they are the same as someone they love. It’s a great read – “We like school and are not happy if we miss days” and “We both like potato chips and chocolate (but not together)” and “We both love going to the beach.”

And the Number One disability theme is ….



What’s the big deal? Disability is normal. And, besides, being normal is overrated.

With help from Liz Spikol of The Trouble with Spikol it should be easy to see the arbitrariness of, ambiguity of, and disservice of labels after labels after labels in "Time is on our side".

And, Connie Kuusisto shares “My Husband is Blind. Top Ten Questions I’m Asked.” “He always looks so good. Do you pick out his clothes?” and “Does he know what you look like?” and “Shall I trim his eyebrows?” Well, Connie, don’t keep us in suspense, does Steve want his eyebrows trimmed?

Thanks for all who submitted wonderful posts for this carnival. Let me know if any of the links aren't working right. If you can't get enough Top Ten lists, check out "Ouch Top Ten". Always fun stuff there.

UPDATE: Late entry from Goldfish that fits in maybe #10, or #9, or #7 or a few places I guess. "My Top Eleven Things I Wish Someone Had Told Me About Chronic Illness Eleven Years Ago..." is chock full of lessons learned about living fully, such as "You are not a medical condition" and "Nobody is really going to understand what you are going through." Check it out!
One more: Over at Twinkle Little Star, Lisa lists "The Ten Most Litigous Comments Made to Me in Job Interviews." "Without my glasses, I can't see a thing. And I know I couldn't teach kids without my glasses. I just don't see how it's possible." Incredible!

The next carnival will be hosted by Reimer Reason on September 13, with entries due by September 10. Posts can be submitted via the carnival site. Update - Penny says the theme is "Resilience".

On a very serious note, two stories that we all need to be made aware of:
The tragic death of Ruben Navarro, allegedly killed by his doctor, and Utah Medicaid will no longer be paying for wheelchairs to be used outside of the home.

The pictures for this carnival all come from Dan Wilkins at The Nth Degree. If you've never checked out his site, head on over - he's got buttons, bumper stickers, and t shirts, and lots of disability culture writing.

Thanks to my mom for putting together the Disability Blog Carnival logo with Dan Wilkins Ramp Minds picture, and for putting the "numbers" on all of The Nth Degree artwork.

Descriptions of pictures: Carnival Logo: A guy with a rather absent look in his eyes has a wheelchair ramp switchbacking up to his head. He is wearing a black hat which is flipped open and several people (one in a wheelchair, one with a cane) are falling into his head. Dan Wilkins' title is Ramp Minds. "Ramp your mind at the Disability Blog Carnival" is added across the ramp. Picture number 10: a dark green t shirt with the quote, "Adapt or Perish" and a picture of the progression of humans from the chimp to the primitive man to upright man and finally to the person in a wheelchair. A purple "10" has been added in the lower right corner. Dog pin: a dark green pin with a dog pawprint and "Meet me after work for some heavy petting. Woof!" Picture number 9: a white t shirt with the words "Barrier Removal Team" written in red around a circle crossing out stairs and a red number 9 added in the lower right corner. Picture number 8: a black t shirt with bright pink lettering, "Piss on Pity" and a bright pink number 8. Picture number 7: a picture of the front and back of a black t shirt. The front shows a crossed out circle with boxes in the middle and the words "no boxes" underneath. On the back is written, "see the whole kid". A lime green number 7 has been added. Picture number 6: a beige rectangular pin with red lettering, "Feisty and non-compliant". A yellow 6 has been added. Picture number 5: a brown t shirt with white lettering, "Your attitude just might be my biggest barrier". A blue 5 has been added. Picture number 4: a black t shirt with white lettering, "There comes a time when even the best advocates need a day off." There is a picture of a fellow in a wheelchair, hair sticking up and thumbing his nose. A white number 4 has been added. Picture number 3: a white t shirt with a black, gray and white Michael Giangreco cartoon. The picture shows an adult woman (presumably Mrs. Snippett) peaking around a corner to see child in a wheelchair further down the hall. The caption reads, "Inclusion mishap #9: Due to a faulty intercom, Mrs. Snippett thought the principal said, "You have a new student coming to your classroom. He has disabilities. Do your best to elude him." A brown number 3 has been added. Picture number 2: A brown t shirt with white lettering, "I AM. Therefore, I matter." An orange number 2 has been added. Picture number 1: A brown t shirt with white lettering, "Severely normal". An aqua number 1 has been added.

My Costa Rica experience: A slideshow and reflections

Free MySpace slideshows, photo and video editing at www.OneTrueMedia.com

• Family is a very important part of Costa Rican culture. Most of my host family’s relatives lived very close to each other, and nearly everyday members of the family would get together for dinner or coffee. Often, it would be a very large group. Family members on both my mom and dad’s sides of the family gathered regularly, seemed to know each other well, and had fun together at parties. And, there was always a reason to have a party, including having a visit from me!

• Ryan, my friend who came along on the trip to be my personal assistant, and I were treated like family. Eduardo, Marianela and their daughter Marypaz welcomed us with open arms. On our first night, they had relatives over to the house and ordered a pizza for us. Each morning we shared with the family a homemade breakfast including delicious Costa Rican coffee. Each evening, we shared in making and eating a Costa Rican dinner, we chatted, and we played games. One evening, Ryan and I came home around 8:30 in the evening after a very long day. Our host parents were waiting for us, wanting to hear about our day and share the social process of dinner-making with us.


• Costa Rica has the largest gap between the rich and poor of any country in Central America. Like in the United States, this could be seen in our drives throughout the country.


• I was struck by the lack of healthcare resources available to the people of Costa Rica. In the physical therapy department at one rehabilitation center, the physical therapy equipment and the all the patient beds were located in the same room. The hospital seemed to have only the necessary equipment. There were no extra amenities or “fluff” to make the hospital stay more enjoyable - no therapy wedges, no toys for children, no DVDs or books or magazines for adults, no paintings on the walls.

• In Costa Rica, people take their jobs very seriously and are proud to work hard and serve their customers. On my first night in Costa Rica, my taxi driver, spent two hours helping find the best way to get me comfortably in his taxi. At the end of the trip, one of our bus drivers wanted a picture with each of the delegates, saying, “You are such a special group, it’s a pleasure serving you.” Police officers were very helpful in helping us cross through busy San José traffic.


• At one center that we visited, some of the residents had been there for a long, long time. Some spoke of family that couldn’t or wouldn’t care for them. Some cried a lot, and others were very, very happy to have a visit from our group. Seeing people living in these sad circumstances was sobering and disconcerting. I realized how lucky I am to have a personal, family, financial, technological, and community resources that I have. We need to do better at taking care of each other in our world, and sharing our resources more equitably.


• I found it interesting to hear Ryan’s reflections on the experience. Ryan and I hadn't known each other that well prior to this trip, and this was our first time spending an extended period of time together. Ryan observed that many able bodied people in both the United States and Costa Rica seemed initially scared of me. They did not know what to say or how interact with me. However, once a conversation with started by me, they realized that we did indeed have commonalities. (I, of course, know and experience this fact everyday, but it was interesting to hear Ryan's take on it. I was reminded of Christie Gilson telling me that those of us with disabilities spend a lot of energy making other people feel comfortable with us.)

Ryan also came away from the experience with a profound respect for people with disabilities and their personal assistants. He had no idea how much time and energy it took to perform mundane, but necessary responsibilities. During the trip, he almost always had tasks to do. Once he finished one task he moved right on to the next one.


• All in all, I’ve had a powerful experience that continues to and will continue to impact my thoughts and life decisions. Thanks to all who have supported me.

Music on slideshow: Manu Chao, Me gustas tu

Christie Gilson: An Agent for Change

Last week, I had the pleasure of interviewing Christie Gilson. I met Christie at her office in the Education Building at the University of Illinois. Christie is a warm, friendly person with an easy laugh, and was very open in sharing her thoughts and goals. She has a “go for it” outlook on life, teaching by example to follow one's dreams. This is the first of several entries about my interview with Christie.

Christie is a blind Doctoral Candidate in the Department of Special Education at the University of Illinois. She has an interest in the educational experiences of students with disabilities around the world, particularly in Asia. She said that Asian college students with disabilities are underrepresented in education research. Two years ago, Christie applied for a Fulbright scholarship to do her dissertation research with students at the University of Hong Kong. Her alternative plan was to interview international students with disabilities currently living in the U.S. about their schooling experiences.

Christie was thrilled to learn, several months later, that Fulbright had accepted her, and she began to plan the many details that would make for a successful Fulbright experience. She needed to set up all the necessary requirements for her dissertation research, and because she is blind, she had additional planning to do. Christie had previously lived in Germany with her ex-husband, but this would be her first time traveling alone for an extended period of time. She called Mobility International USA and the American Consulate to ask for travel and living advice. One of her hardest decisions was deciding whether to bring her elderly German Shepherd guide dog. In Hong Kong, dogs are uncommon, and guide dogs are never used. Also, because her dog is elderly, Christie wondered whether her dog would be anxious in such an unfamiliar place. In the end, Christie decided it would be best to leave her dog home and bring her white cane.

Excited to share her big news, Christie told family, friends, and coworkers about her Fulbright award. Most were excited and supportive, happy that Christie would be following her dream of going to Asia and respectful of Christie's ability to do the work to make this experience successful.

However, there was one person who doubted. A special education faculty member. The only place that Christie encountered questioning of her ability to function as a blind Fulbright scholar in Asia was from a special education faculty member.

We hope that special education teachers empower students with disabilities to believe in their capabilities and support them in finding the necessary resources to make their dreams happen. The irony is that many of us have consistently had the exact opposite experience. We've had special education teachers who cannot see beyond our disabilities. They box us in, seeing us as nothing more than a collection of "problems". Christie’s out to change special education. As a faculty member, teaching special education teachers, there will be no more boxes.


Description of picture: Christie and her German Shepherd guide dog, Jill

Independent Living

Last week, at my request, an occupational therapist and 2 rehabilitation engineers from the University of Illinois Chicago Assistive Technology Unit came to my house for an evaluation of a couple of my needs – a cell phone that I can use independently and a custom tray that will allow me to use my laptop, voice recognition software, and large Kensington trackball in my wheelchair. I had used the A.T. Unit’s services once before for a household adaptation and had had a very positive experience. Usually when I meet with service providers, I prepare myself for disappointment – disappointment in the attitude, capabilities, effort, and vision of the service provider, because that is the norm. But, this time, based on my past experience with A.T. Unit, I was feeling cautiously optimistic. I was not let down.

Here’s how the visit went…

First, they came on the same day that the said they would, and they even called to let me know that they were going to be a little late. Courteous. Respectful of the value of my time.

When they came in the door, they made eye contact with me, introduced themselves, and said hello to me. They were respectful to my mom, but recognized me as their client. More respect. Professionalism.

Then they asked me about my needs and my goals. More respect. They didn’t ask about my diagnosis or my “problems”; they weren’t relevant to the problem-solving. No pity, no shame, no getting off track.

The A.T. service providers never questioned the value of my goals; they accepted them as worthy, because I said they were important to me. Client respect.

The 3 providers were incredibly detailed in their evaluation of my needs – taking measurements and photographs, and asking specific questions to make a thorough assessment. They bounced creative ideas off of each other and off of me and my mom. Goal-oriented teamwork with a real effort to address my needs.

I am excitedly looking forward to see their solutions. To have my own cell phone would allow me control over my own phone calls. It would allow me to be out without a personal assistant, knowing that I could call for assistance if needed. The adapted tray will allow me to use my laptop computer set-up at college for note-talking, paper-writing and any other work that I need to do.

The Assistive Technology Unit at UIC is an example of an organization that is supportive of my life goals, supportive of my desire for independent living.

If I want to live independently, does that mean that I have to do everything for myself?

No. If self-sufficiency were the definition of independent living, then nobody lives independently these days. The pioneer families may have grown their own grain, milled their own flour, baked their own bread, sewed their own clothing, and built their own houses. But today, everyone I know lives interdependently within their community, both receiving from and contributing to the community's well-being. We have farmers, carpenters, artists, teachers, housekeepers, computer technicians, journalists, etc., each offering to the community and each receiving from the community.

I see myself living interdependently in my community. I know that I have talents to offer, and I know others have talents that I can benefit from. I hope I can put everything together, and be in charge of my own life, making my own decisions. Interdependence and autonomy is my definition of independent living.

I'm willing to work hard to develop my talents, and I realize that I will have to make some compromises, maybe where and how I live. What I don't want to compromise is my autonomy, my ability to make choices and decisions for myself and for my life.

I think the greatest obstacle to my autonomy is society's reluctance to recognize me (and others) as a full member of the community, to recognize that the talents I give and the services I receive are on the same par as those of every other member of the community. The services that I need are not charitable services that a provider can provide when he or she finds it convenient. I do not need to be grateful for jobs done halfway or inadequately, nor accepting of disrespect of my personhood.

My need for clearing of snow-covered curbcuts is as valid as a driver’s need for clearing of snow-covered streets. My need for a personal care assistant is no less valid than a working parent’s need for capable childcare. My need for prompt, precise repair of a broken piece of necessary medical equipment needs to be respected as much as the need for any community member to have a repair of a gas leak in their basement. My need for a textbook on tape on the first day of class is no different than my classmate’s need for a hardcopy of the textbook on the first day of class.

My experience with the UIC Assistive Technology Unit gives me hope for the future –hope in others’ ability to respect and serve me, and hope in my ability to contribute to others.

Description of picture: Me, laying on my mat table and working on my laptop with my trackball and voice recognition equipment

Control

I interviewed “Brian”, a gentle man with a very quick wit. Brian told a story that highlights the issue of control. I think this is an issue that is often faced by people with disabilities.

In his 24 years, Brian has needed 37 surgeries to repair the life-sustaining shunt that was first placed in his brain as a baby. He said a shunt malfunction can occur at any time and requires immediate surgery for repair. Brian starts to realize his shunt is not working when he feels moodiness and lethargy. After a while he develops a severe headache, nausea, and a sensitivity to bright lights.

Brian must interrupt his life, head to the hospital, and have surgery. He is grateful to have a consistent primary surgeon for each surgery. However, Brian faces new resident doctors, fellow doctors, nurses and anesthesiologists each time. These healthcare providers play a pivotal role in the surgery’s outcome and Brian's comfort, yet they have no personal experience with his complex needs. It is a terrible combination: Brian’s shunt malfunction is unpredictable, he feels miserable, and he has changing healthcare providers. At one time, Brian intensely dreaded this experience.

With the help of his family and a psychologist, Brian realized he needed to gain control over this challenge. He thought of his needs during the surgical experience - dim lights in the operating room, IV anesthesia, extra warmth, and a calm, light mood, to name a few. Brian made a written list explaining these needs, which he keeps ready for hospitalizations. His instructions have been consistently followed by his healthcare providers. While Brian is not able to avoid the shunt repair surgery, he is able to maximize his control and make the experience as manageable as possible.

The issue of autonomy is huge one. Society is designed for those with able bodies. Buildings have stairs. Crosswalks have signs that only those with sharp vision can read. School programs, recreational activities, and community events often are one-size-fits-all. Health care providers learn textbook solutions to “problems", often overlooking the person. This societal design forces people who don't fit the cookie-cutter mold to be dependent on others to bridge the gap between society’s attitudes and our individualities. It is necessary to depend on a wide range of people - doctors, teachers, personal assistants, educational assistants, family, friends and neighbors every day. From eating, bathing and going to the bathroom; to be being pulled out of the classroom for therapy; to waiting for the special bus, people with disabilities depend on assistance for a variety of things. And when dependence comes in, autonomy and control go out.

Even under the best of circumstances - a willing, respectful, capable helper and a clearly defined task - it is difficult to rely on other people's help. In a classroom lecture, my assistants took notes for me, writing down the material they thought important in the style the thought best. In addition to the loss of personal preference, there's also a loss of control over timing; I have to wait to go the bathroom, to get a snack, to get my laptop computer. And when the circumstances aren't the best - an unwilling, disrespectful, incapable, helper along with an ambiguous task - autonomy and control can really suffer.

This issue of control is faced every day. When to be assertive? When to be aggressive? When to go with the flow? When to just give in?

I admire Brian's courage and creativity taking back control in a very difficult situation. By identifying his needs and preferences and sharing them with those he was dependent on, he makes a major change in his life.