Blog-sanity and the Stories We Share.

Picture: Ellie at age 9 playing with"Logan" who is a Fijit.

I'm going to try to blog more because this blog offers perspective - for me when I write  - and from you when you comment. I learn stuff.  Ryn Tales has also served as a centering force on this uncharted path.  I  have been feeling self conscious though about how much to share about Ellie. She is growing older and it's her story just as much as my own.  From your comments, sharing parts of that story has seemed to help - serve a purpose - help others.  And I am still learning about disability and how to navigate its ever changing face every day.  The extroverted part of me wants to share every bit of that learning here to have help in making meaning of it.  But like I said, it's Ellie's story, so some things I can't share.

Time is also an issue. I remember reading Biz Stone's Who Let the Blogs Out.  It's a great book for anyone out there thinking about blogging and what to do. He really lays it all out for you.  One of the things he says though, is that unemployment is the best thing for a blogger.  Simply put - you have time to write and more importantly  - time to reflect on life. Time to take the wisps of inspiration and commit them to the small screen.  He was right.

Since I finished my dissertation, nothing slowed down. Instead I just got more busy with work and family and catching up with the long list of things I needed/still need to do for Ellie.  Also upon finishing instead of feeling relieved I just feel restless and wound up - like all the things I put off for 18 months should not get done right away.  Instead of feeling accomplished, I am more keenly aware of all the things I want to do that I now can with the letters. In that sense it's been a decade of waiting.  Hence the restlessness.

What's in order however, is renewal and perspective and being centered. Sadly, none of that is coming naturally and is proving something I need to create myself with discipline and practice and acts. Blogging is one act. This blog is also something wholly mine versus being a thing I produce with my mind and creativity for other people and as such, not to be neglected.  If anything I hope it continues to serve some small corner of humanity.

Last, I heard about this book on NPR today. I just ordered it so will let you know what I think.  However, I hope more is written on this topic - disability. It's always on my mind.  The love I feel for Ellie and the joy she brings me every day is something I always appreciate and am grateful for. AND a book like this that tells how various societies viewed disability differently may offer some proof that disability has been appreciated.  Go see the Neanderthal skeleton in the Smithsonian where the note reads that the person lived and died of old age despite an obvious massive skull fracture injury.  So if the Neanderthals valued their disabled enough to expend limited resources to keep them alive and treat them as a valuable member of the tribe, why not us? Or more specifically, why not all of us?

A History of Disability (Corporealities: Discourses of Disability)

Henri-Jacques Stiker (Author), William Sayers (Translator)

Disability Blog Carnival #41: Death Becomes Her

Excellent carnival by Retired Waif. (apologies for lameness in not posting this on the 14th!)

Check it out!

38th Disability Blog Carnival - Spirituality and Disability

In my understanding of the world we are all ghosts in the machine here to learn and grow in our capacity to love and have compassion for ourselves and others. Choosing to pay attention to the lessons so you get the most out of them requires examining one's world and sometimes asking why it is the way it is.

For my part I have skirted disability in my early years spending some time in a wheelchair and constantly tripping over my feet and falling because I was born with severely clubbed feet. I have endured some very painful operations to fix them. Then, years later, I have a baby 3 months too soon and that baby becomes disabled because of her traumatic birth. I can't but help thinking my early experiences as a child of not being able to get my feet to stay under me, being made fun of because of it, enduring long hospital stays and painful medical interventions have prepared me to better understand and raise Ellie. I am not saying in any way shape or form that I know what it is like to have hydrocephalus, CP, PVL or a seizure. But I do know what it is like to have IV's, pain meds, physical restrictions, tight tendons, time in hospital, endure huge amounts of physical pain, and having to rely on others to help you get to and fro. I think knowing these things has helped me demand better care for her as well as respecting what she has to go through from a much clearer perspective.

More importantly in my role today as a parent, I also understand what it is to feel like a burden to one's parents because of these things. My mother was always so exasperated by my inconvenient extra ordinary needs right from day one. That is something I don't want to pass on to Ellie -ever. I think the idea of being made to feel a burden upon one's parents or society is a form of hate. It's a way to say you don't matter why don't you just disappear. I know that this idea of burden is placed on people with disabilities all the time. It's also assumed that because my daughter is disabled, that she is a burden. I am here to tell you that is damaging and not true and a sign of ignorance.

In truth, having a kid with special needs is different in some ways but not in terms of time, commitment, engagement, and the basic all encompassing nature of being a good parent versus a crap parent who takes their kid for granted and does the bare minimum to get through the day building no relationship with them at all.

I do think that having a disability can allow you to develop certain traits that you might not develop if you never encounter any difficulty in life. I do think dealing with disability has informed the way I parent (would parent anyone not just Ellie). It might be that we have been more loving and gentle and appreciative of her because we almost lost her, because there is so much she can't do on her own. I am sure that plays a role in how we parent her. Either way, I feel so lucky to have such a great kid, just the way she is. Ellie is a universe that I am happy to orbit. Ellie is a blessing to me not because she is disabled but because she is my child.

I can never separate the experience of being a mother with that of being a mother of a child with disability. I don't know what it is like to parent anyone else but Ellie. But this experience in all is magnitude has helped me unfold as a soul. I am more patient than I was before, I am happier than I was before Ellie, and I am way, way less ignorant about disablism. Because I was ignorant about it all before and I am still learning. In this carnival I learned that the term "confined to a wheelchair" is pejorative. Many of you out there are saying, Duh!. But I am being honest here - now that it's in front of me, I get it, but it wasn't something I realized until someone put it in my face. Hence the beauty of the Disability Blog Carnival.

So is my life some huge set up, a plan of God's? I can't help but see it that way. My freedom of choice is in how to behave and feel and deal within this set up. For me, seeing it this way is important to taking total responsibility for my own attitude and demeanor and not playing the victim, all of which ultimately effects the happiness of a little girl who is the embodiment of love and light and wonder.

That's my take on it.

Many philosophers have thought along with Descartes that "the unexamined life is not worth living". And Shakespeare said, "Know thyself!" To that end the topic for this carnival is about the spiritual meaning of experiencing disability either first or secondhand in this life. I think you will find some very thoughtful and in many cases poetic examinations of lives being lived by the carnival's contributors.

Welcome to the 38th Disability Blog Carnival!

**Just in this post that I had to include called Spiritual Infringments over at Planet of the Blind by Stephen Kuusisto. Here is a quote: " “Listen,” I said, “I really don’t require prayers.” I stopped for a moment. I needed to hold myself back. I didn’t want to plunge headlong into a theological debate. I didn’t want to say that my permission might not be required for authentic prayer."

***Just in, Laura Gilmore gives us this great post Does Everything Happen For a Reason over at Touched By an Alien: Life As I Know It. Thanks Laura!

Tokah has written some powerful posts in the past and this one is right up there. For those of you who think disability might be the result of sin, check out what Tokah has to say about it. For the carnival Tokah gives us this post: Impairment and Spirituality over at From Where I'm Sitting. Here is a quote.
"My belief in God is the lens I see the world through, it is the deepest and most immovable part of me. One of the few things that is understood about my disabilities from a medical perspective is that there is a lot of congenital involvement. Thus, to be consistent in my beliefs, I cannot come to any conclusion other than this:

God created me knowing I would be a crip."

Elizabeth McClung gives us this excellent, well written post and and well though argument, Thoughts about "praying for me" and "hoping for a miracle" posted at Screw Bronze!. Here is a quote: "When I first became ill I talked and wrote about it with my Christian friends. And I watched as the two Christian forums I participated on quickly responded in a singular way, “I’ll pray for you” while at the SAME TIME, talking, emailing and communicating with me less."

Yanube gives us this post is a response to one of the commenters on Elizabeth's post: Religion, hardship, and belief posted at yet another never updated blog. Here is a quote: In Screw Bronze!, Elizabeth eloquently discusses the way that her old church friends have deserted her, offering weak promises of prayer instead of camaraderie. In the comments, Gaina inquires how Elizabeth can remain "a christian after everything you're experiencing"? As an atheist, I wish to respond to that: Why shouldn't she?

Disability and Language posted at Bad Cripple. William critiques a NYT's article about a mother of a disabled child having a "second chance". William I hope you send in your remarks to the NYT's oped pages because they need to read by a wide range of people. Thank you for this one! Here is a quote: The language is antiquated, insulting, and devalues the life of a child and by extension all disabled children and adults.

Athena, Ivan, and The Integral presents 38th DBC Entry: Our thoughts on Disability and Spirituality « AthenIvanIdx’s Weblog posted at AthenIvanIdx's Weblog. Excellent post. Here is a quote, "So spirituality and religion has a very, very important function in our lives. We although think that our disability -(now correctly diagnosed, might we add. well, as correctly as possible. autism and asperger’s, what’s the bloody difference?)- has a major role in how we interact with our Lord."

Check out this excellent post titled, "chaoticidealism: CP, quality of life, and autism" posted at Report from a Resident Alien. Here is my favorite quote, quite possibly for the year, "Duh: I don't know what it's like to be another autistic person. But that's true whether or not we're functioning at the same level. Nobody ever knows what it's like to be anybody else; we can only imagine. Problem is, some people assume they know."

Meg writes this excellent analysis in: That's Reality, Greg over at Hey Meg. Here is a quote: "I know most people are doing the best they can; I’m sure our story is unusual for those have never encountered disability. I wonder how others feel about the ways in which I respond to them, when they are discussing topics that are new to me. I hope I am gentle, open, accepting, inquisitive, with an attitude that whatever the scenario, it is a part of human life in all its bittersweet magnificence. I guess I will have to work on it."

Myron Uhlberg shared tales of his Deaf Heroes (his Parents) at the International Reading Association Convention posted at Deaf Characters in Adolescent Literature, saying, "Honor thy mother and thy father--check!"

Diana Lee presents Exploring Mindfulness-Based Stress Reduction posted at Somebody Heal Me by Diana Lee.

Catherine presents Pencil In. posted at Charming BB, saying, "Please include." This post effectively captures a very poignant moment.

In Mother's Day Shopping posted at Frida Writes, saying, "The Christian card shop is more scooter-friendly than the Hallmark--so that's where Fridawrites spends her money for Mother's Day"

Teri holds a book give-away in her post: Faith and Disability Book Giveaway at Barriers, Bridges and Books. Teri, thank you so much for this entry!

Sarah writes this informative post about adaptive skiing over at Impossible Universe.

Off topic but tis the season: excuse me, your ablism is in our feminism posted at Sly Civilian

Emily Elizabeth writes about this interesting and hopeful development in congress: Let's Get This Caucus On... posted at Lovely and Amazing

Sarah writes Paralympians in the News: Josh George, Natalie du Toit, and Oscar Pistorius posted at An Impossibility in an Impossible Universe. Many blogs are covering the Pistorius news, but this post is excellent in that Sarah has put him in context with other athletes.

Sarah also gives us this post on a case that is placing disability, particularly Autism in the quite imperfect media spotlight: Church Files Restraining Order Against 13-Year-Old Boy With Autism posted at An Impossibility in an Impossible Universe,

On the same topic: The ultimate in legal rejection posted at disabled Christianity,

More commentary on the case: Mass confusion: A restraining order and a boy with autism posted at WHEELIE CATHOLIC.

And sometimes you just have to laugh! I don't know what is more spiritual than that!

Damon Rose from Ouch! pens this excellent, well written, well said, humorous post: BBC - Ouch! Disability Magazine - Weblog - Crap News: guy goes on holiday posted at BBC-Ouch! Disability Magazine

Pope Bonkface VIII gives us this humorous post: A primer to the reactions one gets when they mention 'medieval disability studies' posted at Medieval Cripples, Crazies and Imbeciles ... and a Service Dog?.

Thank you to everyone who contributed to the blog carnival!

The next Disability Blog Carnival will be over at Emma's blog called Writings Of A Wheelchair Princess the deadline for submissions is June 9th and the Carnival will be up on June 12th and the theme is "If I knew then..."

Great theme Emma! Can't wait to read it!!!!

Shameless Plug and Clarification of the NEXT Blog Carnival

Hi Everyone, I thought I would write to tell you all little bit of what I would hope to hear about for the next disability blog carnival that is here at Ryn Tales. The topic is Spirituality and Disability. Spirituality is a topic that touches disability in unique ways. I wanted to write about it and to hear what you had to say because there have been so many crazy takes on why all this happened to Ellie, to us, and what it all means I think hearing from the people who read this blog and those living what is seen as a disabled life could be really great on many levels. First to share and second to once again tirelessly clear up misconceptions about disability and it's place in religion and spirituality. For example the worst thing I have come across in the pseudo religious and spiritual realm about why this happened to Ellie is that she is paying for somebody's sins. Nice huh?! That was just excellent when that was said to me. Another is that she is the reincarnation of another disabled person in the family history and on and on. I heartily disagree with both points of view and will be writing about that a little but also about the HUGE gains I have made as a person from being in this unique situation. I will also share some of the amazing experiences I had that are definitely in the spiritual realm before Ellie was born as well as from those first touch and go days. Mostly I am wondering what your life lesson might be if you have a disability or are parenting someone who does. I agree that we are mostly all temporarily able bodied. I think it is the rare person who lives able bodied their entire life to gently die in their sleep. So this carnival might be of some use to us all. That said, unless your topic is way, way out in the stratosphere (like discussing the migration of earthworms) anything goes. So if you have already written a post, it will be very welcome!

37th Blog Carnival: Celebration of Disability Culture!

Great carnival and many compliments to Crip Chick who organized this great carnival! Here is an excerpt from her introduction.

The words carnival and disability together brings many images to mind. Images of freakshows, disability being manipulated, and all kinds of hard times for disabled people are thought of. Here we are though, in 2008, reclaiming and recycling these words together to mean something new. This disability blog carnival, the 37th one of its kind, focuses on the celebration of disability culture, struggle, people, history and identity. Put your party hats on— we’re ready to get started!

“I think it was perhaps the most important thing that happened to me. It formed me, guided me, instructed me, helped me, humiliated me, all those things at once. I’ve never gotten over it, and I am aware of the force and power of it.”—Dorethea Lange on disability


The next Carnival is here at Ryn Tales and the theme is Disability and Spirituality. Anything goes so submit, submit, submit. SEE you back here in May 22 for the 38th Disability Blog Carnival.

Disability Blog Carnival #35: The Hardest Part

The carnival is up over at Reimer Reason. It's excellent! Check it out!

Disability Carnival #31 is up and it's Super!!!

Emma , over at Writings of a Wheelchair Princess, has done a great job organizing this very interesting carnival with one of the best themes ever - Superman.

Thanks Emma!

Here is an excerpt I really love that I have cut and pasted from Emma's post. (Emma I hope you don't mind, but I want a t-shirt that says this too!). Thanks to Lisa for penning it.

It’s something that I wrote about earlier this week in this entry. And it’s something that Lisa wrote about in Can I Just Have This Made Into a T Shirt and Call It a Day? In saying the following, she totally blows me away and says something I’ve wished to say, something I’ve tried to say before.

"If you are going to call me remarkable, amazing, inspiring, or whatever other adjectives you want to use to put me on a pedestal…it better not be because I am disabled, or because I partner with someone who is disabled. It better be because I have won an Olympic Gold Medal or a Nobel Peace Prize or a Pulitzer or because I have brokered a treaty between waring nations or because I can tie a cherry stem with my tongue or because I have actually DONE something remarkable. And “coping” with disability DOES NOT COUNT. I didn’t do anything to be disabled, I was given this gift. "

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The next carnival will be hosted by Shiloh over at Sunny Dreamer. It’s theme is “Standing Outside The Fire”. It’s on the 28th and submissions are due by the 25th. If you prefer not to use the blog carnival form, submissions can be e-mailed to celtic_me2000@yahoo.com

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!!!

Disability Blog Carnival is UP: Disability in the Media

The carnival is up here and it ROCKS! The theme is Disability in the Media. Great theme. Really jam packed awesome carnival with many thought provoking posts. Thanks to Connie Kuusisto for organizing this. Excellent Carnival Connie!!!!

The next blog carnival will be here at Ryn Tales on January 24th. The Theme is "what professionals should know about disability". Submission deadline is January 20th.

Disability Blog Carnival #28: My Favorite Things

Over at Andrea's Buzzing About you can check out the latest Blog Carnival. It's excellent. Thanks so much to Andrea for organizing this so well!

the 21st Disability Blog Carnival is UP!

Move Over Letterman, there's a new David in town.

David has posted the latest Disability Blog Carnival comprised of many top 10 lists. It's a great idea for a carnival and David has done a GREAT job of organizing it.

I have to go now - lots of thought provoking, funny, deep top 10 lists to read. Enjoy!

Top 10 Most Unexpected Blessings From Holland

This is my post for David's Disability Blog Carnival with a Letterman style top 10 list coming to his blog on August 23rd. (Great idea for a carnival David!)


Here we go:

The Top 10 Most Unexpected Blessings From Going to Holland Instead of Italy:

#10. I got to read a lot of poetry dissing the Dutch.

#9. I have something to blog about.

#8. I now know who my true friends are.

#7. Because of the g-tube I can completely control her nutritional and caloric intake.

#6. I haven’t had to childproof the house.

#5. She won’t run away from me in a crowded public place.

#4. I have met the most amazing people from therapists to nurses to parents of other preemies and children with disabilities – I never would have met otherwise.

#3. I see disability now and instead of fearing it and I continue to expand my understanding of it so that I can advocate for my daughter and in doing so strive to make the world a better place.

#2. My marriage, having been tested to the most intense heartbreaking limits, has remained strong and wonderful. I have discovered that Dave and I are the most amazing team and are not afraid to face anything together – that’s nice to know heading into auld age which is probably scarier than everything thus far!

Drum roll please....

The number one Most Unexpected Blessing from Going to Holland Instead of Italy is:

#1. Holland is way less crowded and the lines are shorter.





Just kidding.

The best thing out of all of this is:

#1. I have the most wonderful, loving, spiritual, emotional, strong bond with my child. I appreciate every, and I mean every little thing she does, every single moment of her life, more than I am certain I would have, had I gone down the typical road - to Italy.

– Every little thing she does is magic and I have the eyes to see it.

Disability Blog Carnival #18 is UP and it's Awesome

Here is a description of the carnival from her blog:

" Disability Blog Carnival #18,
a/k/a
The Disabled! We’re just like YOU!!!!

So, that said, this edition of the Disability Blog Carnival is designed to explain the the untutored able-bodied type that there’s nothing abnormal about us… we’re just like them! Please do accept my tongue-in-cheek parody and sweeping generalization in the spirit it’s meant, and don’t allow my irreverence to detract from some of the awesome, wonderful writing to be found ..."



I can't tell you, Retired Waif, how much I LOVE this topic! Great Carnival. Thanks for putting this together, especially, while in false labor! I hope all is well and that you have a baby, not only in your Victorian cart, but in your arms as well, safe and sound.

If you have not already been following Retired Waif's blog you are in for a treat. She is one of the most introspective, thoughtful, witty writers out there who always makes me think and see things in a new way. I truly love her blog. Enjoy!

Blog Carnival #17 is up at Planet of the Blind!

I am so behind in my reading! Lots of excellent, heartfelt and hillarious posts in this one folks. The theme is Laughter, the best medicine. Right on!

Steve and Connie have done and amazing job at organizing it. Just wonderful. You can find it here.

Blog-o-rama

Hosting the Disability Carnival was great fun and introduced me to many new great blogs. There are also some blogs that I consistently lurk at but have yet to put on my blog roll. Well today I am finally getting around to updating the blog roll and giving shout outs to the newbies.

Here are some blogs soon to be on my roll that you might like:

Reimer Reason. Jodi writes well and often about her son Kellen and many other pertinent issues to parents raising children with disabilities. Jodi is brilliant.

Chewing the Fat. David is a paramount story teller and just nails a lot of the issues around accessibility and many others consistently.

Chocolachillie. It's a great blog written and about a lovely mother and her family. I can't say much more about it because I am still a bit choked up by recent events. So go there with a gentle heart.

Dream Mom. She inspires me daily with her painterly prose. She is ahead of me on a path I feel destined to follow. I am grateful to her for lighting the way.

Disability Studies at Temple University. GREAT resource here. It really is a blog that keeps it's finger on one of the many pulses of the disability world.

Lovely and Amazing. Such a positive outlook on life and boundless love for a beautiful child should never be overlooked.

Planet of the Blind. Another great site dealing with the issues of disability rights from a very personal perspective of it's authors. Great writing as well.

Pathway at UCLA Extension. Ok - everyone give a big cheer and send all the positive thoughts you can, because I want this project to thrive and grow and set the bar high for a future norm of providing college education in an accessible, flexible environment for anyone with a disability who wants one. Give them your support at their newborn blog!

The Perorations of Lady Bracknell. She's smart. She's witty. She nails it every time and she writes as if she lives in the 1800's which is a period of time in the writing world I am particulary fond of - so double bonus!

That's it for today. My plan is to update the blogroll in this manner quarterly. Enjoy!

Disability Blog Carnival #15: Family and Disability

Welcome to the latest Disability Blog Carnival. The theme is Family and Disability. Thanks to the many people who all submitted wonderful, interesting posts to illuminate this topic. If I did not include your post attribute it to pure human error. The topics below emerged out of reading the submissions. Thanks to Kay for the GREAT Blog Carnival image to the left. (Image description: Image is black and white. In it a one legged man stands on crutches on a beach looking out at the San Francisco Bridge next to a small child who is holding onto one of his crutches as one might do to a parents hand.) Enjoy!

Topic: Loss of Anonymity

This topic of anonymity is a BIG one for parents, like myself, of special needs kids as well as disabled adults and their families. As a parent you may be able to pass your beautiful baby off as normal (sometimes depending upon how many tubes they are attached to or how badly they were injured at birth) to others and even to yourself. I remember thinking when I was holding little infant baby Ellie, to enjoy this time because it would be the most “normal” it would ever get (total care is the norm for a 4 month old). And of course it wasn’t normal, but it could pass a little for normal and I clung to that for a while because the near, middle and far future were filled with scary possibilities and so many unknowns. I went from there to the point where I had to embrace the reality of disability publicly. In my experience, embracing it sooner than later is probably better for many reasons – the main one being you will be a better advocate and supporter of your child’s journey in a body that is not considered able and in a family that is considered different. I wrote this post about it that should have been titled “Coming Out at the New England Horticultural Show” because it was at that point I really decided to embrace “The Chair” and all that comes with it.

Jodi Reimer at Reimer Reason describes this topic very well in her post Anonymity. Here is a quote, “Having a child with Down Syndrome means that your family will never again me anonymous. You will always kind of stand out in a crowd. I don't think it is necessarily a good or bad thing, it just is”.

David Hingsburger over at Chewing the Fat is a great storyteller and this tale of an every day hero called Victory is an excellent account of the day-to-day battles people with disabilities face.

Lisa writes so many great posts on my topic this month that if you really want to know something about disability and family – just read her blog! She wrote this great post here about Defensive Parenting that she used for BADD. It’s a great post and a great topic as well as phrase – defensive parenting. For this blog carnival I also want to highlight this post titled, My double life about her experience of being happy and having to defend that happiness to those ignorant about disability. Here is a quote,

"But then there is the other life I lead, the defensive one. The public one. As much as I try to let the real me just shine on and become a public example of what is going on in our lives, I find it very difficult."
Lisa’s posts are long and thoughtful. She has a rare gift as a writer of being able to convey multiple angles of an issue. So get a cup of tea and then settle in as it is well worth the read.

Topic: Don’t speak for me
Astrid discusses families, independent living and the necessity of allowing for nonverbal people to have a voice in Thoughts on Support Attitudes and Disabled People Having a Voice. Here is a quote from this excellent post:
“Children and even adults with no functional communication skills are therefore presumed not to be able to have a voice of their own, so their parents speak for them. While I don’t expect all adults to go onto the mailing lists, it is quite different for a parent or carer to claim to speak for the person they’re caring for but actually to speak for themselves, than to adjust their communication to meet the person’s abilities and try to understand their wishes and claim to speak for themselves while having tried to best understand the person’s wants. It may take more effort from the supporter, but it enables the person to be a real person rather than a duty list - and I still hope parents and carers can appreciate that person.”

Autism Diva wrote a great post titled All’s well that ends oddly enough. In it there are many videos of autistic children, Autism Diva’s thoughts about them and therapies they are subjected to as well as cautions and concerns she has about caring for an Autistic child. I have been reading her blog for a about a year now. As a result, my whole view of Autism changed from not understanding and curious to understanding much more to the point of questioning if it isn’t just another manifestation of normal. See what you think.

In the first part of her post for BADD, Laura discusses facing her school’s ignorance about Asperger Syndrome when she was 12. Here is a quote,

"Harassment won't make a child with Asperger syndrome understand social situations any more than beating a child with dyslexia will make them learn to read. It's not like it will reverse the brain damage.”

Stephen Kuusisto over at Planet for the Blind writes a very eloquent book review of Reasonable People: a Memoir of Autism & Adoption, by Ralph James Savarese,
The Other Press. Here is quote from Stephen’s review:

"The sub-title of the book is as important to culture as the title itself: “On the meaning of family and the politics of neurological difference”. This timely book is about the Horatian life, “Life” written with a capital “L”. Accordingly it is about family and the life of the mind; about poetry and the fierce resistance to stereotypes of people with autism."

Ralph James Savarese also recently wrote a column in the LA Times titled, “You’re adopting who? A couple's decision to take in an autistic child draws callous reactions.?” that you can find

here.

Topic: What it’s like
This topic includes accounts about what it is actually like living in some part of the disability world. The accounts are all well written and thoughtful pieces that will help those on the outside look in.

Funky Mango's Musings gives us some not so random drivel in They Deserve Better about the sadly lacking state of England’s services for critically ill children. Here is a quote:
“Barbara Gelb of the Association of Children’s Hospices said:
'Children and their families are suffering as palliative care services across England cut back and close down. Even the emergency money given to English children’s hospices only covers a fifth of their running costs and runs out in 2009. We need urgent action now, with substantial new money in the forthcoming Comprehensive Spending Review.'"

Badger gives us this piece titled: An itch ... that is always scratched, yet never eased on what it feels like to have Tourrette Syndrome. Beautifully written and descriptive – I will never see Tourrette’s the same way again after reading this:
“The feeling creeps up my spine, across my shoulders, I can feel it and I wonder what will happen next. I am never sure. Sometimes it's just a twitch, others a huge squawking outburst.”

Badger follows this with a frustrating, but all too common, tale of an encounter with a new specialist who's condescending and ignorant in this post titled NHS Ignorance.

Eminism reports on "Ashley treatment" (growth attenuation, etc.) symposium @ University of Washington, May 16, 2007. The other day my blood ran cold when I saw in my site meter that a person found my blog via this search “Ashley treatment in Dublin”. Was that a parent looking to inflict this on their child? I will never know. I wish I had kept blogging about it and against it despite Trolls. To me it’s pretty clear – it’s wrong. Please don’t do this to your child. The ethical battle is still raging and Eminism gives an accounting of both sides of the argument, albeit from her perspective, from her notes taken at the conference.

Topic: Demystifying and Diversifying the Meaning of Perfection
Funky Mango gives us this post titled Too good to be able bodied about Oscar Pistorius. A double amputee Olympic caliber runner. It seems that he is faster than non amputee runners and there is a feeling that, that is unfair. What do you think?

Sam at Useless Tree writes a Taoist commentary on a recent New York Times article on Down Syndrome and Prenatal Testing in Human Diversity. Here is a quote:

"Calling the parents "evangelists" strikes me as unfair. The larger issue, however, is well captured here. It seems to me that, as a society, we are more concerned with "preventing" disability (which, of course, is impossible. Even if some sorts of disabilities were eliminated completely through abortion, there are plenty of others that occur later in life...) than we are celebrating human diversity.”
Right on Sam! Great post.

Topic: Get a Clue! Tips for Family and Friends
David at Growing up with Disability writes a post that should be handed out as a primer for all temporarily able bodied souls on how to treat someone with disability (except maybe for wiping their face with the diaper) titled Reflections on self-love, self-worth, and Family.

Wheelchair Dancer writes about her frustrations with her family’s inability to accept her disability in Disability and Family IV.

Terry writes One more thing I love about my son detailing his acceptance of disability in their family. I love the whole premise of Terry’s blog titled I see invisible people: News, views and reviews of the people and places overlooked by the world at large. Great stuff.

Emma, Wheelchair Princess, gives us these recollections from growing up in this post titled, Family Relationships. I have learned so many things from Emma that I keep in my mental, remember this for Ellie file that I am forever grateful. Here is a quote,

“And then there were the times when I would throw a fit because I wouldn’t be allowed to do something Ben or Sophie were and I was the oldest and it just wasn’t fair!! I think the worst was when I was 13 and had to have it explained to me that CP was forever.”

Dave Hingsburger over at Chewing the Fat gives us Loud Prayers where he shares an email from a woman who has received some very unsupportive and in fact devastating comments from friends and family since her daughter disabled Cicely has been in a medical crisis. This post could also go under the prejudice topic. But I kept it here because if you have ever thought that a family or the world would be better off without your friend’s disabled kid, or my disabled kid – get a clue and say a prayer for Cicely!

Lost Clown over at Angry For a Reason describes her battle in getting her parents acceptance of her disability in this post titled They just won’t accept it.

Stephen Kuusisto from Planet of the Blind writes about his family’s reaction to his blindness in Of Xanadu and Kubla Khan. Here is a quote,

"I have written two memoirs that are respectively and in part concerned with the subject of my family and the matter of disability. If you have read those books you know that my mother and father were deeply divided about my blindness when I was a boy. They knew the "facts" concerning my disability but they had little or no emotional language that might enable our family to talk about the daily realities that accompany visual impairment."

Catherine at Charming BB writes about her own unfoldment in dealing with her family in Hello Goodbye. Here is a quote,

“I am about 9 months into BB's bone and endocrine disease so things appear more "normalized". It is finally like those times when you can't really remember when things weren't exactly like they are today (like when you move to a new place and after 2 weeks of time you can't remember what eating dinner at the old place was like). I can't really remember not loading up BB's wheels and coordinating his high-powered medical care.”

Her blog has loads of great information and even templates for parents facing the special education system. I am happy to have discovered her blog via this carnival.

Adventures in Daily Living defines the difference between encouragement versus support while discussing her newly disabled father in Musings on Encouragement v. Support . It’s an excellent distinction she is making.

In the second part of this post, A Rest From Putting Out Fires, Retired Waif describes how eager family members are for her to get a parking placard--more eager than she is, as it turns out.

Cancer Diva gives us her insights into how her cancer has effected her relationships and state of mind in Care for a bottle of WHINE with that? Yes, please.

Topic: Impact of Prejudice
Kristina Chew, PhD and mother of a child with autism at Autism Vox gives us Race, Class and Autism. It’s a great post with many links to other research on how race effects the speed of diagnosis and support for children with autism including the impact on their families.

Amanda, gives us this excellent analysis about communication and processing time but also about the ways people try to put her in the box that is similar to themselves versus seeing her for who she is in “Give. Me. Time”. I especially love this post because she describes perfectly the things that happen to Ellie when people are not sensitive to her communication differences. Though Ellie is not autistic, her brain got wired up differently. She has what an able bodied person would consider a HUGE delay in response time. For her it’s a motor planning issue as well as visual and auditory processing differences. Amanda goes into many of the things that people have done to her that shut down communication versus promoting it.

Jacqui gives us her thoughts on her son Moo’s disability in Prejudice. Here is a quote,

"Cause as much as you see the prejudice staring at you on the faces of others - sometimes that same prejudice is staring back at you as your reflection in the mirror."

Paula Apodaca over at E. is for Epilepsy describes the prejudice she has experienced in “Autonomy, Agency, Me & E”. Here is a quote,

“Social disintegration often takes place once E. has been disclosed. But it also takes place when someone witnesses our seizure activity and is “creeped out” by it. Suddenly, an individual loses status within her family, her workplace, and her community. Where once her actions were admired, they become scrutinized; though her decisions were trusted, they are now suspected. She loses responsibility for important and unimportant things.”

Joel from NT’s Are Weird gives us this post titled Respect and Dialog in the Autism World. Joel's countering some incorrect, harmful and disrespectful stereotypes about autistic adults.

Lady Bracknell gives us In which we name and shame where she discusses what happens when you find evidence in your sitemeter that someone on the city council is looking for loopholes in the law... Here is a quote,

“At 12.09 pm today, someone was directed to my blog as a result of having run the following search term through Google:"When is it ok to not employ a disabled person?"See? I told you you'd love it. Ah, but wait. I haven't finished yet. It gets better.”

Topic: A Day in the life: Parenting
Billie details a slice of her life as a mother of the beautiful Miss Eden and Miss Holland in What did you do all day.

Jacqui gives us this poignant post about the lack of access for her son Moo who has cerebral palsy in Screw Holland. I just want to buy my kid a bike.

In Slow What Movement? Dad from, Kintropy In Action: parenting up hill – both ways, gives us a run down of the nightly routine and the few moments of precious Me-time. It is a well-written poignant slice of life.

Lauredhel writes

Another one to the social crime list: parenting while disabled at Hoyden About Town. Here is a quote,

"I poked around the web a little. It returned few pages, mostly from the UK, talking about childcare assessments for parents with disabilities. Almost all of the equipment links I followed led to equipment for parents with sensory disabilities, like baby monitors for Deaf parents. I did find this one off-the-shelf wheelchair baby carrier. Just one.

It seems most parents are left to either try to adapt themselves to clunky, inaccessible equipment, or to get someone to custom-make items like this accessible cot. (How many adapted items meet written national safety standards, I wonder?)"

Rob Rummel writes often and well about his beautiful daughter Schuyler. In this post Secrets he gives some good advice for new parents as well as offering up his own approach to being a dad. I think, probably a pretty great dad.

Topic: Hope for Ellie's Future

Yes, exactly – Why Not College?!

College programs for young adults with developmental disabilities are starting up all over the US and Pathways at UCLA Extension is the blog of one such program, just starting this week. There are many great links and other posts on this blog to watch.

That's it for this Blog Carnival. You can find information about future carnivals here.