Not Just One, But Two Blog Carnivals are UP

You read that right the Disibility Blog Carnival on Identity is being hosted at Astrid's Journal.

AND!!!

The TherExtra Blog Carnival on Music hosted by Barbara is also posted.

Lots of good reading in my near future... won't you join me?

Disability Blog Carnival: Tell The Story! (With Additions!)

Well, at long last here is the Disability Blog Carnival on Story. I am adding posts and such as I go... so visit often, there may be new rides! :)

Let's kick off this carnival with the wisdom of Frida at Frida Writes. She speaks of the power of story to connect and empower. There are a quotes from Elie Wiesel and John Donne and this quotable nugget that is pure Frida:

"How do we change disablism? Read. Write. Speak. Or sign. Learn stories and tell them. Teach others how to tell them. Edit them. Publish them. Retell others' stories. The power is yours. The power is through words."

Laura at Decor to Adore shares a story of extraordinary persistence... with a wonderful ending!

Rickismom from Beneath the Wings writes of the power of the stories we tell ourselves.

Emma , A Writer in a Wheelchair considers writing about characters with disabilities as a writer with a disability...

Dreamer at Life is But a Dream tells the story of  activites that seem easy to some people present unknown obstacles to others (and that minimizing concerns--by staff--does not make them go away!)

Spaz Girl from Butterfly Dreams shares the importance of collecting the stories of the Disability Rights Movement.

Amanda from Ballastexistenz shares a poem showing the difference between her life as she experiences it and as it is perceived (and judged) by those on the outside--professionals and others.

Barbara from TherExtras tells the story of a cat bite and the value (make that necessity!) of self advocacy when working with systems.

Astrid from Astrid's Journal shares a keychain story of self-realization.

Dave from Rolling Around in My Head tells the power of story at work.

Frogger from Special Siblings tells a success story.

And Penny from Disability Studies, Temple U shares one of the many stories of people with disabilities who came before. Stories absent from our history books and experiences...

Visit Media Dis-n-Dat and Disability News where Beth and Pat (respectively) collect disability stories that make the news around the world.

Lisa from Finnian's Journey shares her story of strides.

Cheryl at Finding My Way brings a video story of activism!

Go forth, tell your stories!

The next Disability Blog Carnival will be hosted by Dave Hingsburger over at Rolling Around in My Head... Also, Penny at Disability Studies, Temple U is looking for next hosts, go sign up with her!!!

The Carnival's Coming!!

The next Disibility Blog Carnival will be hosted here next week and the topic is "Story."

Here are some of my thoughts on story:

Story is the stuff of relationship. Story makes information meaningful and 'random' anecdotes connect.

People with disabilities historically have been removed from society's stories--they lived elsewhere, went to different schools, worked different jobs (or didn't), and to a large degree were left out of the history books...

The story society tells itself about disability--that disability is suffering and tragedy--often upstages the stories that people with disabilities live every day and tell whenever they get the opportunity.

Story introduces, bridges and explains...

Stories can be useful in advocacy and as therapeutic or teaching tools....

If you have a story to tell, or something to say about the power of story submit either in the comments on this post or on this post at Disability Studies. Or, if  you put Disability Blog Carnival and Story in the title of your post we (and by 'we' I mean Penny!) know how to find it!

I will be collecting posts all week and plan to post the carnival May 16.

So, whats YOUR story??

(You're right Cheryl, high time I posted this!!)

Tis the (Blog) Carnival Season!!!

A blog carnival is a collection of posts written by various authors (often) on a single topic gathered into one handy place. I have been participating and reading them since I started blogging. Participating in Blog Carnivals is fun to do. They are a great way to learn about different perspectives and to 'meet' new writers, and to have them meet you. The current Disability Blog Carnival, #65, is about 'Balance' and it is posted over at River of Jordan. There is a variety of interpretations of Balance... all good reading. Enjoy!

BREAKING NEWS: Barbara at TherExtras is hosting a blog carnival of her own as we speak!!!! Her topic is Childhood Expressions. Head on over for some good reading.

May is a big month for blog carnivals. The annual BADD (Blogging Against Disability Day) is May 1 hosted by Diary of a Goldfish. Disablism (more often called ableism in the US) is societal prejudice about disability--often a bigger obstacle to success than any diagnosis. Writers write and Goldfish compiles hundreds of post from around the world for this event. To participate (and to grab her cool widgets) see here. Once this is posted you'll want to bookmark the page to go back and do some reading whenever the spirit grabs you.

Disability Blog Carnival #66 will also be hosted in May by me. The theme will be "Story." I will let you know more about that in the weeks to come!

Childhood Expressions

Barbara at TherExtras is hosting this Blog Carnival inspired by William the Bear who has lived in Barbara's room since her daughter moved him in there. I had to join because I have a Lambchop doll who moved into our room one afternoon who will never leave either!

Childhood expressions are some of my favorite memories of my children. When my kids were little I had one earnest friend who chided me for not immediately correcting my children and allowing their immature understandings become part of family lore. Nearly 20 years later both of our kids are finishing up high school or headed to college and no one could tell which of our kids has silly family stories in their backpack...

(One of my children, however, hated to get anything wrong so some favorite stories will not be included here...)

Here are some of my favorites:

Bowl-hat: Is it food storage or a wardrobe accessory? At our house, both. Then we would wash them in the sink with mountains of suds. Still, a sanitizing dishwasher was good to have.
Ladies and Gempimum!!: An announcement made before feats of danger and derring-do--wise mother wears sneakers at all times and starts running before the end of the word 'ladies.'
Oh Poor Jeffer: this was another announcement that required mother to run. When baby Jennifer cried my son would say those words and then throw her the toy he was sure she was craving--a truck, a bowling ball... whatever... Her life would pass before my eyes every time.
Diamond Room: Dining room (it has a chandelier.) I kept this because we were the only family on the street who had one...
Ball Room:  aka the living room... went well with the Diamond Room and the 'our home is our castle' meme--would have been even better if it wasn't because we had a ball pit (and a mini-trampoline) instead of furniture in there.
More Jesus Please: This was a signed request... hilarious because what she wanted was more Cheez-its.

And, drumroll please.... our family's all time favorite childhood expression is:

Can't Like It: This was (and often still is) my daughter's response to negative experiences... love this and use it all the time.

Too many chores, too little time and me the only one home to deal with it?

Can't like it!

Balance... Yeah, It's a Problem

It is ironic that the first post I am writing after not blogging for nearly 2 months is on balance... Because the reason I didn't write for so long was indeed the lack thereof.

Ahhh well.

What can I say? Life is hectic. There is just so much going on: school, kids meetings and activities, work, life-maintenance and more. Disability, of course, adds to this--sometimes more and sometimes less. Truth is, when things get really out-of-hand my favorite things get thrown into the back seat and buried until I finally clean some stuff out, or until I just can't stand it anymore.

This is NOT a recommended method.

Not. At. All.

This is true if you don't have any disability issues to contend with... and more true if you do!

It is far better to establish some routines for the necessary things in life like laundry, meals and sleep, to set some boundaries around the consuming things in life like projects, activities and uproar, and spice things up with enough of your faves to keep yourself from becoming a dull boy/girl...

Yes, that is definitely the best way.

But, sometimes I forget... until, like now I realize that I am spinning my wheels. I am tired and cranky and tasks I usually find reasonable feel like tremendous burdens. Yuck.

You know? No one really likes me this way. Least of all me. And EVERYTHING gets harder in these seasons...

Time for some reading, some writing and some socializing. Not much of any of them (at a time anyway), but some. In my hectic life--not once I'm no longer busy. Because they just aren't as frivolous as they seem.

My kids are nearly adults... and I am learning this again.

No matter what your daily life consists of add in something you love: bake some awesome cupcakes (and share them with me!), color your nails, write down all the birds that land in your yard... whatever! Fit in a bit of what you love--investing that time pays off in energizing you for the rest!

Remind me of this next time I fall off the earth, would ya??

The Disability Blog Carnivals is UP!

Cheryl is hosting a blog carnival with the theme Holidays. Go on over to see posts of varying holidays and perspectives.

If you are interested in hosting a future Disability Blog Carnival leave a comment for Penny. You can pick a theme or not...

Holiday Gifts (For the Blog Carnival!)

At our house holidays are wonderful. We like the food, the clothes, the decorations, the gatherings, the music...and presents of course, we like those too!

In fact we hate the holidays to end. Jenn told me yesterday that she wants Christmas music back--and this after listening to the radio station that only plays Christmas music, at top volume, every moment that she was home, from Thanksgiving until last Sunday when they went back to regular music. (Personally I am ok with a break from the 75 versions of Frosty the Snowman!)

For us the biggest holiday challenge is gifts for Jenn. She is 16, but a lot of the things 16 year olds like do not appeal to her at all.

She is not close to driving, likes new clothes but doesn't LOVE them, and has no interest in video games or MP# players because they really aren't all that accessible for her (though if we recorded Christmas music... wish I'd thought of that before now!) She doesn't really understand gift cards until she is standing in a store...

She does like movies, but she has tons because that's what folks get her. She likes CDs and books (but at her reading level without being too babyish can be tough too.)

Frankly, she would love toys, but toys would not help her grow up. And she needs to...

She isn't picky, and thankfully she is mannerly, but people want to get her something she will like and be able to use.

This year she got some clothes from her sister and her aunt who are fashionistas so that was good. She got a movie and some books that she seems to like. She got some fancy bath items. She also got a game (not quite a toy, but still fun.)

This year was actually pretty successful.

Her favorite gift?

A picture of Zac Efron to hang in her room (from very cool grandparents!) She explained to the newbies in the house that he was in the movies High School Musical and 17 Again.

"And he is mad HOT!!" she screamed.

I admit watching people's reactions when she tells them about it is kind of fun.

And I know she is not the only teenager to have a poster of him in their room.

Win, win, win!

I am already writing ideas down for next year...

(Black and white picture of a 1951 Christmas tree from here.)

The Disability Blog Carnivals are Baaaaack!

Disability Blog Carnivals are a collection of links to posts by various disability bloggers on a topic. Well, after a bit of a respite, a new one is up!

This one is on the topic of Disability and Work was put together by Liz Henry. Follow the links for some good, thought-provoking posts as the National Month on Disability Employment Awareness winds down.

Good News: The Weekend is Here

It is FINALLY true...the weekend is here AND there is a new Disability Blog Carnival up. And it looks like it has lots of good stuff.

Tomorrow morning pour yourself a cuppa and have yourself an interesting read--I will be joining you!

Disability Blog Carnival #53: Potluck, Is Up

You know I love a theme song!

Head over to River of Jordan to see the latest Blog Carnival. This month's theme was Pot Luck--in other words bloggists send in whatever was on their minds. And there was a lot on their minds it seems! I haven't read anything yet, but the topics and titles are very appetizing. I will be heading over for a snack in a little while--join me, won't you? (It's no fun dining alone!)

I brought two dishes to pass this time--one from this blog and one from my new blog which celebrates the graduates of New York State's Partners in Policymaking program. Hope you enjoy them.

And as far as those dirty dishes let me be the first to say "Nose Goes!!!" (LOL)

All puns fully intended!

(My dad sang the first verse of this song around the house when I was a kid--I didn't know about the other verses until today. Isn't the internet amazing??)

Disability Blog Carnival 52

Cherylberyl has the latest episode of the Disability Blog Carnival up in 2 places: on her old blog at Disaboom and at her new blog. It was smaller this time, but there is good reading there (I know I forgot all about it until yesterday...) The topic is Things That are Therapeutic.

Enjoy!

The Next Blog Carnival is UP and other stuff!

A few things on the web that are too good to miss:

I updated it in my post from the other day, but Gary Presley's book has had a rave review in the New York Times!

The Next Blog Carnival is up at The Life and Times of Emma. The theme is "I am." (I think I missed posting that the Blog Carnival on Lists was up 2 weeks ago--good reading over there, some quite funny... check it out!)

I read this post this week over at Wheelie Catholic. Births of children with Down syndrome are rising in the UK... It sounds like the conventional wisdom there is becoming 'life with Down syndrome is not so bad.' What would it take to make that happen in the US? What would it take to expand that to include other disabilities??

In the US we're basking in the glow of Thankfulness and those of us who are not blogging this morning are shopping... In honor of the official start of the gift-shopping season, here is a blog that shares lots of Assistive Tech stuff all year and has gift suggestions for folks with disabilities up now. He will be posting a blog carnival of AT gift ideas in a couple of weeks--watch for that!

Disability Blog Carnival #48: Capacities and Capabilities

Welcome to Disability Blog Carnival #48!

Several years ago I was a young nurse with the dream of teaching in nursing school someday. To test out my idea I would volunteer to present inservices on various topics at my workplace. It was a disaster. More precisely, I was a disaster!

I would study my topic, I would write my talk, I would practice and practice and practice. I would stand up in front of my co-workers and BOMB. I would forget stuff. I couldn’t answer questions. I would go home and cry.

I took a couple speaking seminars and tried again. And bombed again. And again.

Eventually I vowed that I would never attempt public speaking ever again.

Life went on and I got married and had children—and my youngest was born with Down syndrome. When she was a few months old I was approached by one of my friend’s moms. She was on the organizing committee for a huge seminar that was coming up in Rochester and she wanted me to be on a panel for her program.

I said NO about 75 times, but this was Susan’s mom and the topic was disability and this was Susan’s MOM…. So I did it. And it went great. No, really great—it was easy, I made sense. I answered questions. Once I stopped shaking I even liked it.

What happened???? My dad said it was “the difference between having to say something and having something to say.”

Disability gave me motivation and even skills I use all the time today. And this is just one of the capacities that has been developed in me since disability has become part of my life.

While I have no desire to sugarcoat anyone’s struggles (even my own!)and I am fond of a good old-fashioned rant, I also see value in acknowledging strengths and gifts and skills when I encounter them. These bloggers have their own capacities and capabilities to share:

Suzanne at disabilityjourney explores the gains disability has brought to her life in her post Them or Us. Dave from Chewing the Fat, in one of his wonderful stories, points out that some with disabilities see nonsense as just what it is in Half the Story.

Ettina from abnormaldiversity shares her idea that capacities coming with disability does not apply to people who have had their disability from birth in Disability Teaching a Lesson? But in her post Accepting Imagination Deficit she shares how important her creativity is to her.

Another blogger whose gift of creativity comes through is Maggie from Maggie’s World in her October post. And Goldfish shares some humour and ukulele love in I Went to the Shops and I Bought…

Barbara from Therextras offers advice to parents of kids with disabilities who encounter folks who cannot see their wonderful, beloved children through their disability label/appearance in Blind to Normal.

Confused of Calcultta points out that people with disabilities are at the forefront of hacking and adapting technology to meet specific needs. Check out the post here.


Wheelchair Dancer objects to the concept of capacities and capabilities in relation to disability. She strongly asserts that capacity if often used by society to attribute value to the lives of people with disabilities and they do NOT determine value. Read her post Not Handicapped, Handicapable for some hefty food for thought.

Grace from Disabled 2 Able writes in Learning from Disability about what she learned through physical therapy, her chosen profession and what she and her daughters have learned about life since she contracted polio as a child. Grace says her daughters are skilled at evaluating accessibility. Learn more about accessibility as it relates to hiking trails from brokenclay.org/journal.

In The River of Jordan Jordan’s mom shares her son’s imitable spirit in her post Capacities and Capabilities.

Lorraine at Keep Bloggering On welcomes Sweet Abey James—with a wonderfully sweet picture! Debbie at Pipecleaner Dreams appreciates the value of wonderful treatment that accommodates disability graciously in Can I Take Your Order, Please.

Rickismom has a couple of posts for us about lessons learned at Beneath the Wings. She writes about her daughter’s success in learning chemistry, that some folks disbelieve that people with Down syndrome can learn at all (and their attitudes actually create that situation sometimes) and about how her own learning of language grew as she taught her daughter.

Historiann is a history professor who writes about the politics and economics of disability in her post, Memento mori: why single payer is the only way to go. Rob Q. Ink who often writes about sports (especially Philadelphia sports) as well as disability also examines politics in his post, Jumping into Election ’08. And Ruth at Wheelie Catholic also finds that her political involvement is informed by her disability experience in Well, I Have my Ballot.

Sometimes emotions can be overwhelming as Abby points out in It’s a Bit Early for Thanksgiving—but give thanks she does, as you will see. And Frida shares how she values some of her friends who share her disability as well as her own disability awareness and self-acceptance in the midst of pain in Weekend Update.

Debbie from A Life Without Limits: Rollin’ Into the Future catalogues the many characteristics she developed by going away to school in her post On my Own: Looking Back at my College Experience.

Thank you all for stopping by—come again, we never close! And thanks to all the wonderful bloggers who participated!

The next carnival will be hosted by Blake at I Hate Stairs and the theme will be “Lists.”

Why the picture?? Because disability is a mixed bag! And I got the picture from here.

Reminder: Disability Blog Carnival Here Next Week

Just a reminder folks: I am hosting the next Disability Blog Carnival here next week. My theme is Capacities and Capabilities and I would love to include your post.

What have you learned or become that you might not have without and encounter with disability? Have you become a medical expert, education specialist, behavioral manager, mechanic, efficiency expert, law specialist, problem-solver, activist, interpreter, ambassador, poet? Or something else that I haven't thought of....

Has your faith, creativity, determination, efficiency, patience, impatience, techno-savviness, assertiveness, connectedness, sensitivity, sense of humor or some other trait grown or been changed? Any of the above? All of the above? None of the above, but something else entirely??

Then write it up, or take a picture, make a video, put it in an acrostic poem--or a sonnet, or haiku (though I won't get it--I just don't get haiku :) )

For the record, I know that disability is not all sunshine and roses. I do realize that everything is not all special all the time--I also know there are things that I have gotten to (or had to) learn, and folks I have gotten to know that I would have missed without disability.

Life's a mixed bag. Out of that bag, what are the capacities and capabilities that bring you through??

Think about it and put something together this weekend so I can link us all together next week. C'mon, it'll be fun!

Leave a link in the comments here, at Disability Studies, Temple U.,or through the Blog Carnival form (excluding CAPTCHA in play over there still.) I can't wait to hear from you!

Photo from here.

Disability Blog Carnival #47 Is Up

This is the 47th Disability Blog Carnival and it is posted over at Day in Washington. The theme is Policy. As always the carnival is a gathering of interesting perspectives. Go read!

The next Disability Blog Carnival will be posted HERE on October 23rd. The theme will be Disability: Capacities and Capabilities.

There are many things I have learned about and have learned to do because of my experience with disability that I might not have learned otherwise. I think this is true of many of us. I think folks inside and outside of the disability community rarely recognize or celebrate the skills we have gained.

You can send your posts through the Disability Blog Carnival site (which, sadly, has inaccessible CAPTCHA) or you can leave the link in a comment on this post, or in a comment over on Disability Studies, Temple U. Or you can just put Disability Blog Studies in the title of your post and Fearless Leader Penny will usually be able to find them.

Disability Blog Carnival #46: Falling Is Up

Hi all, the Disability Blog Carnival #46 about Falling is up over at Disability Studies--Temple University. Penny has amassed a bunch of excellent posts about disability issues with her challenging writing prompt.

I sent her the wrong link about my own entry... don't know how I did that, but sometimes I just goof up!

Here is my "Falling" entry.

Check them out!

Edited to put in the link I meant to put in yesterday!

Disability Blog Carnival #46: Falling

I have had nightmares of falling since I was a little kid--when I read in a psychology class at some point that falling is is a pretty common nightmare I was so relieved! I don't bungee jump, or even jump off diving boards. Falling is not my idea of entertainment.

Yet for my daughter who is a teenager with a disability it looks like falling is what comes next. After highschool, then what??

Healthcare: adults with disabilities (even pretty old adults) if they have physician coverage at all are usually covered by their pediatricians. I thought the biggest reason for this would be lack of expertise, but no. The biggest reason is because adult practitioners won't take Medicare patients.

And why are most of these folks on Medicare? Because other insurance coverage is tied to employment.

Employment: The unemployment rate for people with disabilities is a steady 65-75%. The rate of underemployment is pretty darned high as well--one of my friends had a workshop job where he made $1.19/hr just a couple years ago. Think that job had great benefits?

Housing: So with no employment what do you suppose happens with housing? What are the options? Home ownership is somewhat rare (I told my son that that saying 'somewhat rare' when I mean 'never happens' is called lowperbole--he said, "No poetic license for you!")The fact that a person with a disability can never accumulate more than $2000 makes ownership impossible--how would you ever put on a new roof?

People talk about falling out of education and into adulthood where they must surrender to system control or life at mom's with the remote control... (I'd say 'over my dead body,' but that just makes my point.)

Our community is working hard on this, but I am still having nightmares. And, as my daughter used to say: I can't like it.

Edited to add the line I didn't realize I'd left out: The generations of parents, advocates and self-advocates brought our kids home and started them on the path of education. Our generation is charged with the next phase: employment and LIVES! We have much to do, but the alternative is unthinkable.

Picture from here.

OOPS: Forgot to mention there is a great treat ahead.

Blog Carnival #44: Superlatives: Serendipitest and Sarah Palin

Blog Carnival #44 is up.

Well, since yesterday morning I have been busy making up words to describe the situation that the disability community is suddenly in…

Of all the words I have tried, I think “serendipitest” is my favorite! As in, the 2008 Presidential Election is the serendipitest situation the disability community has ever been in! (My son says my poetic license is about to be revoked!)

But seriously folks—is this not an amazing opportunity?

For those of you who slept through yesterday, Sarah Palin, the governor of Alaska—who has a child with Down syndrome—has been named as McCain’s running mate in the 2008 presidential election.

So now we have a candidate whose stance on disability is detailed on his website, and the other candidate who has not posted a position on disability, but is running with the parent of a child with a disability… hmmmm….

Whether you favor the Democrats or the Republicans in this election, these candidates and the publicity that will surround them present a GREAT opportunity to increase exposure and understanding.

Already today the national press has exposed the country’s ignorance about disability in general and about Down syndrome specifically. We have heard the all kinds of ‘person last’ and ‘person missing’ descriptions. We have heard ever-so-objective reporting about Down syndrome using words like “afflicted” and “suffering with” (bleah!)

And, in a failed attempt to be Relevant (with a capital R) Katie Couric and her co-newsperson discussed whether having a son with Down syndrome made Mrs. Palin unfit for office.

WHAT?????

I am not at all sure that being the parent of a baby with a disability QUALIFIES a person for office by itself, but I am quite certain it doesn’t DISQUALIFY them…..

They had to say something… I guess.

Folks, this is a “sticky” moment. We have laid groundwork with years of building inclusion in our communities, we stirred the pot a bit with visible protests of Tropic Thunder this summer. The world is ready to hear from us.

I wrote a post on making waves a few weeks ago: well the waves are rolling in, if we stand up now we can surf our way to some new understanding. Presence, and Credence, builds Influence, which leads to more Presence…..and more Credence… yielding more Influence… and so on!

To the credit of the National Down Syndrome Congress and National Down Syndrome Society they put out a press release with accurate information about Down syndrome and person-first language yesterday.

Last night I saw video of institutions in Serbia—do you think having the parent of a child with a disability running for a national office could show new possibilities to people in other countries?

It could if we used it that way.

If you have been planning public awareness campaigns, release them now.

If you formed some new relationships during your protest of Tropic Thunder, pull folks back together and plan some next steps.

Self-advocates and parents and professionals alike: flood your newspaper with letters and essays.

Publicize your regular events—especially the fun ones—wouldn’t hurt to fundraise now either!

Yup, I’m going with serendipitest!

Picture from here.

Blog Carnival, Tropic Thunder and other Bits and Pieces

Thing one: Blog Carnival #43 is up at cherylberyl. I didn't write for it this time, but I wouldn't miss reading it!

Thing two: Check here to see the follow up on the story of Rudy Wallace who I wrote about back when I started this blog. There has been a little justice--nowhere near enough.

Thing three: Free Words Hit Like A Fist cards here.

Thing four: here are some more bloggers weighing in on Tropic Thunder:
Lovely and Amazing
5 Minutes for Special Needs
Equal Not Special
Tristan and Chanelle
Beneath the Wings
Wheelchair Dancer
The Special Parent
Evergreen Digest

The visible solidarity that the disability community has established (for the first time) has the potential to potentiate our other efforts to establish ourselves in our communities. Our next steps, now that we have raised a few waves is to sustain the energy. This is done by building on the relationships you made in your community through this effort and by initiating the next wave of presence/credence/influence.

Video from The Arc of Virginia and Blueberry Shoes Productions