Tuesday, August 28, 2007

New Television Channel

UPDATE: New blog address for [with]TV found here.

Check out a new website and link on my blogroll, [with]tv. Connie has been asking me to write about this for a while, and I’m just now getting to it.

According to its blog, [with]tv is “ a start-up corporation devoted to providing television and Internet programming of, by, and for people with disabilities.”
Connie, from Planet of the Blind, is a volunteer blogmaster for the website and is looking for people to submit posts. You don’t have to be a blogger to participate. You can email Connie at articles@with-tv.com.

Yet another way for our perspectives to be heard. How cool is that! And, when you visit the [with]TV website, be sure to sign the guestbook and share your ideas and support.

Tuesday, August 21, 2007

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.

Monday, August 20, 2007

Ruben Navarro

I have blogged before about the treatment of people with disabilities as less than human. But never murder.

I hope the horrific story of Ruben Navarro, the young man whose death was allegedly hastened by a physician, has caught your attention -- but it may not have since it has been minimally covered in the media. The local news station covered it here, but there doesn't seem to be much other coverage. According to the news station, a transplant surgeon is "facing three separate felony charges in connection with the death" of the young man.

The tragedy is thoroughly covered on "Big Noise, A Blog about Equality, Freedom, and Justice". There are quite a few links to details of the story and to the actual complaint filed by Ruben's mother. Ruben Navarro was a young man with a disability who was institutionalized when his parents could no longer care for him. Within 5 months he was dead, seemingly murdered by a doctor who wanted quicken his death and harvest his organs for transplantation.

Please check the link and learn the sad horrible details.

Tuesday, August 14, 2007

Kids Are Kids!

Thanks to Ruth and Connie for finding this interesting article about a recent study that concludes children with cerebral palsy are no less happy then their able bodied peers,

The study surveyed 500 8-12 year old children with cerebral palsy and found that while they participated in less activities then able bodied children their enjoyment of life was just as great.

Professor Alan Colver, of Newcastle University who conducted the study hit the nail on the head.” The change now needed concerns attitudes. Pity and sorrow should not be directed to disabled children because our findings indicate that they experience life as do non-disabled children. Maximum effort is needed to ensure their rights as citizens, rather than as disabled children, to participate in society as fully as other children."

Of course! Kids are kids. They just want to have a good time. Check out pictures of Moo, Ellie, Holland and Eden all having fun.

Let’s do what we can to not take happiness away from children through exclusion, pity, and lack of opportunity.

Thursday, August 09, 2007

Come to the Carnival!

Go to Andrea’s Buzzing About and check out the latest disability blog carnival! The theme for this one is "ON HOLIDAY!" - a fun theme for the summertime. There's sights, sounds, and even....food!

The next disability blog carnival will be right here in two weeks, on Thursday, August 23. The theme will be “Top Ten Lists” a la David Letterman and BBC Ouch Magazine.

You can make a Top Ten list about anything you want; any topic, any style is fair game - the Top Ten moments of the Disability Rights Movement, Top Ten reasons you enjoy blogging, Top Ten funniest questions you've been asked, Top Ten pieces of advice for some unsuspecting person. Your entry can be serious or humorous. Ouch’s lists may get your creative juices flowing. Here's one I wrote a few months back.

Everyone is welcome - I hope you'll write your own list and send it to me at the carnival site by Monday, August 20, or via my email (in my profile).

I look forward to reading your lists. It should be a fun way to closeout this summer of carnivals on borders, laughter, carnival and a baby, sex, and holiday!

Wednesday, August 08, 2007

“…not this separate category of human beings”

Fifty years ago, babies born with developmental disabilities were routinely placed in institutions by their families under the direction of their family doctors. Health care professionals often advised families to forget the child, to have other children, and move on with their lives. It’s an appalling time in our history – babies and young children routinely abandoned and forgotten.

I think it’s important that we recognize and remember this cruel part of our history. Kay Olson from the Gimp Parade says,

“My personal thought on what happened 40+ years ago is that it was a tragedy for whole families and has undoubtedly had a lasting impact on how we view developmentally disabled people today. That is, we're still living with the legacy of those folks being segregated, made invisible, and devalued. It has impacted how we view developmental disability and the way we think of difference - we have all been taught implicitly by this history that people who are intellectually or developmentally different do not belong among us because they're dangerous, completely incompetent and lack any ability to contribute to society.”

While I was away last week, CNN covered the story of one man’s search for his sister. Jeff Daly made a documentary, “Where’s Molly?” in which he talks candidly about what it was like to be a 6 year old and have his sister sent away, rarely spoken of and advised to be forgotten. CNN shows a clip of the documentary and has an excellent article on Jeff’s and Molly’s experiences.

Kay’s words above are in a CNN blog that she wrote on this topic. She writes about he challenges of accurate diagnosis and the even greater challenges of predicting potential.

More from Kay on how the line between “us” and “them” is not so solid and clear cut:

“I think the main thing that nondisabled people don't necessarily know or understand is that developmentally disabled people are not this separate category of human beings. People tend to think, "We can do things. They cannot." And there's no line like that dividing all of us. There are shades of ability, varying talents that surface in surprising places. This is true for physical disabilities as well. Most of us, in the course of our lives, discover we have abilities or affinities for some things and lack talent elsewhere, so this idea that a certain class of people lack value or the ability to contribute inevitably underestimates and wastes a lot of human potential.”

I think it’s important that Jeff and Molly Daly’s story be heard. We cannot move forward until we acknowledge where we have come from. Jeff Daly is now working to reunite families affected by this tragedy. There is a national registry, called The National Find Families Registry, to help families affected by institutionalization to find each other.

Thanks to Elizabeth Cohen and Jennifer Pifer of CNN for bringing this important issue to the public’s attention. So often, it feels like the media’s stories about disabilities are superficial and artificial, “feel good” stories that are designed to entertain or “inspire” those without disabilities; stories that maintain difference, segregation, and the status quo. This is a real story with important ramifications, things to contemplate and learn, and also with actions to be taken.

Lastly, I have to say how much I admire Kay Olson’s style of advocacy. Her approach is thoughtful, reflective and encourages open dialogue. She is thought provoking and assertive without being hurtful or condescending. Kay is the quintessential advocate. I learn a lot from you, Kay - Thanks!

Monday, August 06, 2007

I Like Vacations!

I just returned from a beautiful trip to Wisconsin where I went bike riding on the Rails to Trails Elroy-Sparta bike trail, swam, played card games with my family, and went to a play.

I really look forward to going on a vacation. One reason is because it’s a welcome break from the everyday hassles of appointments, therapy, equipment, caregivers, etc, etc. Sometimes the everyday "stuff" of living with cerebral palsy can drive me crazy. It’s nice to get away, relax, explore new places, and hangout with my family. Of course, there are plenty of hassles with traveling, but I try not to dwell on them and try to enjoy the new adventures.

My parents bought this Duet bike 11 years ago. I love riding on it because I can feel the wind in my face and being on trails feels calm and peaceful. I cannot last too long on it because it doesn’t provide enough support. But that’s okay – it’s fun!

The Elroy-Sparta Bike Trail is neat
because it is fairly level (having been an old train track) and scenic. It also has many bridges that you cross and 3 long, dark, creepy tunnels that you walk your bike through.

The picture of me on the bench is when I was taking a lunch break at Gina’s Pies are Square. Yum!

I like to swim. We’ve figured out a way that works well for me. I wear a life jacket (it gives head support) and an inexpensive inner tube. When I’m not relaxing and floating on my back (like in this picture from a few years ago), I can paddle on my stomach and swim around. Moving in the water is so much easier for me than moving with gravity.

This card holder has seen me through many games of GO FISH, Old Maid, rummy, hearts, and poker. This trip we played Back Alley Bridge and Euchre.

Recently, my family has started taking in a play on some vacations. This time we went to the American Player’s Theatre in Spring Green, Wisconsin. It was fabulous!

I like vacations! Can't wait for the next one!