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Thursday, May 22, 2008

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!

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!!!!

14 comments:

Penny L. Richards said...

Thank you Kathryn--what a collection! The next carnival edition will go up on June 12, so there's a long time to make your submissions by the June 9 deadline. and "If I knew then" is the kind of theme anyone can spin from, I suspect!

Connie said...

DARN - we're late! Here's a post Steve wrote a while ago in case any one is interested. It's called "Spiritual Infringements".

http://kuusisto.typepad.com/planet_of_the_blind/2006/11/spiritual_infri.html

I look forward to returning and reading through the rest of the contributions. See you then!

Connie

Sarah Heacox said...

Thanks! Lots of good reading here.

yanub said...

My! You did a lot of work not just putting together links you were sent, but actively bringing together diverse perspectives. I'm impressed!

Laura said...

Here's my submission
http://zeppyoscarandcompany.blogspot.com/2008/05/does-everything-happen-for-reason.html

Laura said...

Sorry I misunderstood and thought your deadline was June 9th, not Emma's. I'm on some painkillers for an infected wisdom tooth that make me kind of groggy and stupid. I didn't realize that your deadline had already passed.

Ruth said...
This comment has been removed by the author.
Ruth said...

Thanks for all your work on this carnival. I'd like to add another link to a followup post on the one in the carnival:

http://wheeliecatholic.blogspot.com/2008/05/spiritual-bottom-line.html

and apologize for my VR not working in the comment before this re the link and having to delete!

athenivanidx said...

thanks for an excellent carnival!

I still haven't quite decided a topic for mine yet.....

Laura: hope your tooth gets better soon, or gets yanked!

Blech......sounds very painful indeed.

Thanks again Kathryn for a great posting.

The Integral

Terri said...

You did a great job with this carnival! Great reading. I am forwarding your link to many folks.

medrecgal said...

Kathryn,

Your comments in this post about your own early experiences having influence upon how you parent Ellie struck a chord with me. Though I'm not planning on raising any children, I surely think early experience (and current, too, for that matter) with disability informs the way I see things. It's just about impossible for it not to.

Oh, good...more fodder for yet another blog post. If you're ever curious, I've actually started my own blog at ifitaintbrokedontfixit.blogspot.com, and I'm sure there will be occasions when I will write about the technicalities of life with a disability. That doesn't mean I won't keep reading the other blogs I've frequented, however, so fear not, LOL!

Greg said...

Wow great job, Thanks

FridaWrites said...

I've just now had a chance to read these--great carnival! Every single time I sat down to read the entries before, something interrupted.

Ellie is beautiful, and you are a great mom. I have no doubt that your own disability experiences have increased your sensitivity to her needs.

Kathryn said...

Thanks to everyone for the kuddos!