Sunday, August 29, 2010

Free to Be...

... You and Me.

I'm loving that commercial - I don't even know what it's for! Target? - that features the Free To Be You And Me song. We used to own that record when my brothers and I were little. I've wanted to get the anniversary edition of the Free To Be You And Me book for Sweetie. Just haven't gotten around to it yet.

At any rate, I think that message is a great way to preface this post. What I'm about to write here is solely MY view on things. I do not intend to offend or otherwise diminish the opinions, thoughts or feelings of anyone else. I only mean to use these things as a jumping off point for expressing how my opinions, thoughts and feelings fit into the mix. Everyone is, indeed, free to be - and feel - however it is they do. Just like I am free. I'm just going to apply my freedom by writing this here blog post...

With that said, I'll remind you again of my quest to reestablish my blog roll. In addition to recalling the blogs I've been linking to all along, I've also been searching the blogosphere for new blood. Specifically, blogs themed around disability in some way or another. A mom or dad writing about the ups and downs of raising a child with a disability. A disabled adult chronicling his or her everyday life. Something new to my readers and something, ideally, with a positive/motivating spin on what it means to have a disability.

Unfortunately, what I've actually run into more often than not, it seems, are blogs that either A) look like they'd be great but haven't been updated in at least several months, or B) have a very definite political/socio-cultural bent and are typically angry in nature. Angry about how disabled people are treated in our world. Angry about how said writer personally feels about his or her disability-laden lot in life. Angry about lack of respect, lack of ability, lack of opportunity. Just plain angry. And sad.

Well that makes me angry. And sad.

This is not to say that I disagree with these bloggers. Sure - when grouping all people with disabilities in a very large, very "in-general" grouping - "we" certainly are not as well respected or offered as much opportunity as others. And as I said at the beginning of this post, I definitely don't mean to detract from the very real opinions and feelings of others. But it's just not a stance that I personally want to promote.

And whereas I cannot speak for - would never dream of speaking for! - all disabled people of all different types, I can speak on the more specific topic of what it means - what it feels like - to be a person living with Spina Bifida. What it's like to be me.

Because in my blog searching I've also come across those few and far between sites written by individuals with Spina Bifida. And again I am saddened and shocked by the percentage of them that feature writers who are so angry with life. Who can't get past how they're being treated and oppressed and brought down by The Man. Writers whom, it seems to me, do everything they can to blame others for the poor way they feel about themselves.

I'm sorry, but I just don't get that. I mean, it's not like Spina Bifida is something that happens to a person after years of living a totally awesome and carefree/disability-free lifestyle. It's a birth defect. You're born with it. It hasn't changed the way you live your life - it just is part of your life. It's part of who you are and have always been. Deal.

Most things that I am not able to do that other "regular" people can, I've never been able to do. So these are not activities I miss. They've just never been in my repertoire of abilities. Big deal. There are many other things I can do. Some even way better than "regular" people. So there!

Yeah, okay. So there are some things that have changed for me over time which are directly linked to Spina Bifida. Up until my last major back surgery about 14 years ago I didn't have to walk using a walking stick. I just needed my braces and I was good to go. I could even run if I wanted! It was not an advised activity, since I could break my braces if I was too hard on them. Or I could get blisters on my feet. But still, I could physically do it if I wanted.

My need for a hysterectomy - due to a uterine prolapse - a few years back also has, I strongly believe, a link to Spina Bifida. See, my uterine musculature - like other muscle groups in my body - was simply not strong enough to hold everything in place after the stress of my pregnancy a few years prior. I personally know at least one other woman with Spina Bifida who has gone through the exact same thing as me, plus I've read articles that discuss the likelihood of uterine prolapse in women with Spina Bifida.

And speaking of my pregnancy - my chronic back pain and left leg numbness has only been an issue for me since having Sweetie. It sucks, yeah. But it is what it is. And as I've said in recent posts, I actually think my pain and numbness is lessening since taking on my more physical part time job. Yay, me!

You could maybe, maybe even say that my long job search that still hasn't even landed me the full time job I ideally need has been made more difficult because of my disability. Potential employers who did not want to hire me because of being discriminatory against people with disbilities. But I don't know about that. It's not what I choose to believe, anyway. I hope that any potential employer I seek out and who meets with me judges me based on my resume, personality and job specific skills and not the fact that I have Spina Biifida.

And, sure - there are definitely things about who I intrinsically am as a person that have no doubt been shaped by my disability. I'm quiet, for instance. Being the girl in school who was "so different" than my peers didn't help me to feel very comfortable opening up and being as talkative with them as I was at home with my family. And, for better or worse, it's a trait that's stayed with me until this day.

I also know what I can and cannot physically do. More to the point, I know what I can do, but in ways that are more slow, clumsy or just different from other "regular" people. And so I may ask for help with these things rather than make the effort to get the thing done on my own. My doing this, I feel, kind of spills over to other parts of my abilities. That is, I'm not comfortable figuring out how to do new things (to me) on my own. I'd much rather have someone walk me through it. Even if they too have never done the thing in question. Strength in numbers, and all that. Spreads out the blame when wrong things happen, too. But in reality, I have got to realize that I am perfectly capable of taking on any number of new challenges thrown my way all on my own.

But that's my point. These things about who I am as a person - they're my hang ups! I am just as able as anyone else to work through the lesser feelings I have about myself. Or not! Who cares - it's my problem! Because don't we all - disabled or not! - have things about ourselves that we just don't like?! Can't we all tick off a whole slew of problems we find in ourselves/! Aren't we all aging and aching and moving more slowly, more carefully, as we go? We don't need to blame society or government or The Man, as it were, for bringing us down in this world. Disabled or not, we've all got the ability to do that personal bringing down thing all on our own.

As the awesome Marlo Thomas said, we're all Free to Be You and Me. I'm happy with my "regular ol' life." I rarely if ever feel particularly disabled. I just don't think like that. But if others are happy to constantly be down on life and others and themselves, then that's fine for them. Rock on! But stay out of my way, because you and I will never walk the same path.

Live life. Be happy. That is all.


Cassie said...

I've been following your blog for awhile now and I really appreciate your perspective. I have a 5 year old son, Caleb, with SB.

Anonymous said...

i just want to say that i love this blog ! amazing job

Bordeaux Daily Photo

HennHouse said...

So glad I found your blog... A great perspective as I raise my daughter with Spina Bifida.

Do you mind if I link to you?

Karin (at

Amy said...

Hi Karin (et al)

Thank you so much for the lovely comments! Of course I don't mind if you link to me... and I hope you don't mind that I've added a link to yours!

I'm glad I can use this blog to shine a little light on my little life, having so much fun (usually) raising my amazing daughter. :)


Anonymous said...

Thank you thank you thank for sharing your thoughts and feelings with the world. I admire your honesty and frankness about SB. I am alsp a 30 something woman with SB. I just got married this summer and my husband and are starting to plan to have a child. I would love to hear about your experience with having a baby and all the wonderful and scary things that go along with that. I am doing alot of home work about the pro's and cons of experiencing pregnancy whilst combined with SB. Again, thank for sharing your experience with all of us :). if youi want to trade stories and thoughts I would love to hear from you. My email is care :)