a forty week sublet

Jeff and I found out we were pregnant on July 6th, 2010- the day before Ethan's 4th birthday. This never felt like a coincidence to me.
It has been a bumpy ride. I had (and still have to varying degrees) a conflation of pregnancy related 'ailments' which mean I could quite easily beat down a horde of 12 year old boys in a belching contest.
Two weeks before I found out I was pregnant, I began another odyssey of sorts... I found that even my amazingly high pain threshold was no match for the pain I was feeling or my increasingly worrying lack of mobility. This discovery lead me to an orthopedist, an acupuncturist, a physical therapist, an orthotics and prosthetics specialist and a bevy of orthopedic surgeons! Oh my!
The rub on that side of the story is this; I need 2 major orthopedic surgeries on my left foot/ankle/Achilles tendon and of course; won't be having them any time soon because my body is (quite literally) otherwise occupied at the moment!
Last week I was talking about the pregnancy with Jeff and came up with this gem- "Its like my body is an apartment and I'm the benevolent but rather unskilled landlady!" The tenants are fine, they have all the basic necessities covered...The outside of the building, however, is falling apart!
I don't think that feeling is unique to me, I'm sure in fact, that many pregnant women feel that way for some if not all of their pregnancy; overjoyed by the fact that their family is expanding, petrified and appalled at how little they actually feel like themselves or how little how they feel matters to anyone else, save perhaps partners and immediate family.
I've been shocked by some of the reactions I've gotten from friends, medical workers, the public and sadly, not so shocked, sometimes in the same moment.
There's the close local friend who worried that I would have trouble negotiating Portland sidewalks with a stroller or the prenatal nurse who suggested a particular OB because she was "tolerant"... Or the in laws who were concerned about "birth defects" and wanted to know if Cerebral Palsy was genetic.
I think the answer to all of those inquiries is no. Just no. Because while I know that it is, at least in part, my responsibility to educate, elucidate, assuage fears, right now I just don't have the time.
I'm too busy dealing with my own conflicting emotions. I can't tell you how overjoyed I was when all of the genetic tests came back "little to no risk" or, how simultaneously disgusted I was with my reaction.
We don't know the baby's sex yet and won't know anything about gender for quite a few years, I'm determined to raise this child in as gender-free an environment as possible and I'm quite vocal on the subject. Why is it so difficult for me to advocate just as vociferously for my right to raise this child in an environment that with not laden with ableist judgments or expectations.
I have climbed mountains in several countries, jumped out of a plane over the Sahara desert, gone sand boarding in the Namib, catapulted myself onto moving passenger trains with 6 foot platforms in Eastern Europe, as a post-coffee ritual. I have worn impractical, ridiculous shoes in all kinds of weather, while treading over cobblestones.
I can negotiate a city street with a stroller, I can explain to anyone and everyone the difference between condition and disease, that there is no such thing as a birth defect, that we are all different and that each of us gets to decide how to identify and what our particular set of skills and weaknesses, likes and dislikes are, over I can welcome this pregnancy as yet another in an ongoing chain of adventures.
I can welcome this child into the world without any deeper expectation then that they be who they are. I can provide them that space.

Gimping at the mouth...

This weekend, while Jeff and I were in Vegas, during one of the few times we were in the gaming part of a casino, as a cocktail waitress walked by us, in all of her curvy beauty, Jeff, trying to give me a compliment said, "You could totally do that, you absolutely have the body and the beauty, I'm not sure how they would feel about the walk though..."
Immediately after saying this, Jeff realized what he had said and how his attempt at being complimentary had totally backfired! My initial response was one of indignation and frustration, not so much at Jeff but at the millions of times I have heard similar comments, sometimes from people who love me and sometimes from strangers who fire these supposed witticisms at me with either malice or complete ignorance.
I explained to Jeff how hurtful that was, in general and especially coming from my husband who I love so deeply and unconditionally. I said, "...it would be illegal for them to not hire me based on the walk, though they would probably just come up with some other reason why I wouldn't be a good fit and I wouldn't want to be in that kind of service position anyway, one, because I know how hard those women work and what kind of crap they put up with AND because I am not so good at carrying drinks."
Jeff was totally apologetic and understood why my initial response was fear, I have dated, flirted with, been flirted with by, so many people who have made claims of understanding my inner and outer gimp and have made similar, though of course, more hurtful, statements. It was sort of like the good friend who once explained to her young children that. "Aviva's body can't do everything she wants it to and you should both consider yourselves lucky that you have bodies that will do what you want..." When her children wanted me to climb the ladder to check out their attic with them. This before asking me what my limits were (none really- I think if I can handle climbing mount Kilimanjaro and working out enough that I have lost nearly 50 pounds since the second week of October, I can handle an attic ladder!) The thing is, everyone, and I mean everyone has limitations, physical skills and weaknesses, just because mine have a name does not make them public property. As I always say, if you want to know what I can or am interested in doing, ask me! We all know what they say about assumptions.
In the end Jeff and I reached an understanding and are no less in love with each other then we ever have been. It was a good reminder for both of us. For me, because I forget sometimes that even those who love me the most haven't lived in my walk, as it were, and there is a learning curve. I owe it to those I love to be gentle and explain why those comments are unacceptable. I also owe it to myself and the world to be clear and vocal and explain why those comments and the views of differently abled people they encourage and support, are unacceptable.

Prelude- after the fact

I'm on a blogging role. For at least the last year many people I love whose opinions I trust deeply, have urged me to begin working on a book. If you urged, mentioned, encouraged, pushed, prodded or put a pencil in my hand or a blank laptop screen in front of me at any time in the last eighteen months and said, "Write!", then this is for you. And for me. At first I toyed with the idea of writing a book about travel for people who identify as disabled- something you might find in both the "Travel" and "Self Help" sections of your local book seller.
But that seemed so removed, so easy to take the emotion and the fire and hurt and the joy out of.
It has taken me a long time to get here, a PhD and a lifetime and years of adventure and years of heartache and frustration. It has also taken me this last year of being so loved and so in love to believe that I have enough to say, enough to risk and enough bravery to just write a book about me. A book about me in the world.
And it all starts right now. I'm sure that some of this will (or already does) feel aggressive, angry, frustrated, frustrating...And it is meant to. It is also meant to be and feel joyful, triumphant, proud, beautiful, inspiring and sometimes, even funny!
I welcome all comments, critiques and, thoughts. I am putting my heart and my experience on the line. I am, as always willing to stand behind my beliefs and my convictions. I expect to perhaps create controversy or questions. I expect that all of you when commenting will hold true to some or all of those modes of discourse.

and still the fight creeps in...

and still the fight creeps in...

This is not a spoiler. This will not be a theoretical or critical analysis of James Cameron's latest offering, "Avatar" although, I have much to say and at some point those words may show up here.
So, on a Saturday morning, Jeff and I show up for an 11:00 o'clock showing of the afore mentioned film (shown in IMAX and 3D) an hour early. The theater is three quarters full! And the film is worth it! Beautiful, stunning and certainly, the fact that the central character is a former marine (yes, shockingly I agreed to see a film which show cased an aspect of the armed forces- my only justification for this being that I think the American military ends up looking like the oppressive, colonialist, terrorist, oligarchical , occupying and, myopic organization that it is...) who has lost the use of his legs in former "service" who regains the use of his legs when he is in his avatar form on the ideal environment, Pandora, certainly brings up lots of disability theory and studies questions which I am sure I will continue to think about and perhaps write about here or in some other forum...
What I will write about here is what happened after sitting through three fantastic and visually stunning hours and one multiplex large sized drink (even though shared with Jeff), I of the tiny bladder of course, have to pee! When Jeff and I exited the theater we had an immediate view of the nearly mile long line extending outward from the woman's restroom.
Jeff says, almost sheepishly, "you could just this time, use that one..." pointing to the family and disabled toilet just across the lobby.
Taking one last side long glance at the women's restroom line which seems to be growing rather than shrinking, I decide to take Jeff's advice.
Making a quick bee-line for the alternate restroom I say excuse me and weave my way through two middle aged men standing about six feet away from the door to the clearly marked "family and disabled" toilet. These guys are slowly putting on coats and chatting about the film we've all just seen; they seem completely uninterested in using any of the available toilets, that is, until I place my hand on the door handle and begin to push my way in....
"Oh, excuse me, young lady, says the (at least visually) older of the two men- "did you not notice us waiting?", he says as he literally pushes my hand disdainfully off of the handle and wrestles his way into the restroom.
So there I am standing outside the restroom with his companion.
"I actually didn't realize that the two of you were waiting for the empty restroom", I say. Making sure I placed the emphasis on empty.
"Oh, we were waiting" says man two.
I wait a  beat. "So, are either of you disabled?"
"No, of course not!"
"Oh, well the door is clearly marked so, maybe you two are family?" "If you are you could join him in there, that is after all, who this restroom is for, families or disabled people..."
Indignant, man two says, "Look girlie- we're not family and we're not disabled- if you have to go so badly you can join him in there.", he says smugly.
"Oh, I say, I won't be joining him- don't be an asshole. I am disabled so technically, I have more right to that space than either of you..." I say, just stating fact.
Man two becomes offended, "don't tell me you've never shared a restroom with another woman" and "why are you calling me an asshole?"
"It's not the issue and none of your business who I've shared a restroom with and, I am calling you an asshole because you're being an asshole."
"Nice", he says, "very nice" and storms off towards the exit doors muttering under his breath.
Just then his erstwhile friend exits the restroom, pushing his way past me as if my five foot frame is both invisible and made of some sort of permeable mist.
When I enter the restroom, I notice that our friend has neither managed to flush nor, return the seat to it's relaxed position, perhaps I was wrong. We all have our challenges....