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Feeling Snappy

1 Mar

Do you remember the film “Crazy People”, in which Dudley Moore’s character brings refreshing truth to advertising?  It’s hilarious.

My internal editor left me a post-it about needing a break from trying to keep up with the pace of my brain and the demand by my heart and soul, in any conversation, any debate, to “first, do no harm”.

So here’s the first in a series dealing with issues we face in the disability and the parenting kids with disabilities communities.

Because I’m done listening to assholes trumpet on and on, wailing about political correctness, as though the very concept of civility, of being aware and respectful of differences exists for no other reason than to annoy them.

And I’ve had enough of the shit sandwiches we have been expected to eat for far too long.

More of our experience with the r-word.

Take the Pledge.   stw-un-dated-dark

You might be an autism parent if….

6 Aug

You might be an autism parent if...

You put chocolate hazelnut butter in the nutribullet to smooth out some of the natural graininess to make it more palatable for your texture-sensitive kid.

(Note:  this experiment would have worked a bit better with a larger amount of this tasty stuff.  Unfortunately, I didn’t even think of getting him to try it again until I had polished off almost the whole jar. It’s not like I went weeks without that occurring to me.  A jar of Justin’s Chocolate Hazelnut blend only lasts a couple of days, at most, around here. It’s irresistible. Really. Our supermarket and Target both carry it, and the Maple Almond (so good on cinnamon toasts). You can also find it on Amazon: Justin’s)

He did ok with the Chocolate-Hazelnut, on warm toasted baguette, but not that enthusiastic.  He did eat three pieces of toast (small pieces) slathered with it, though, and that’s freaking amazing.   I also got him to eat three (individual raviolis) Amy’s frozen Ravioli even though they clearly had some degree of tomato sauce on them (I scraped off as much as I could. How am I the only person in our family who has zero Italian roots and I’m the only one who will touch a tomato, or sauce?!).  YES!

I’m still finding protein and fresh veggies to be a challenge for him, as he won’t eat nuts (Barney Butter thankfully is smooth enough, and available at Publix and Target(woohoo!) that he accepts it as a peanut butter substitute, as PB is off our menu due to G6PD Deficiency), can’t eat legumes (again, G6PD Deficiency is a factor) and he is mostly vegetarian (we are not, but he just can’t deal with the tearing and chewing of ANY meats), so he consumes quite a bit of milk and I make him a super-smoothie every couple of days with bananas, berries, hemp seed, almond butter, chia seed, yogurt, etc..to try to get at least some variety, as far as nutrients go, into him. He also really likes Life cereal and Cheerios, so at least those are fortified. He is growing and healthy, and the kid has a brain on him, so this seems to be working. Of course, I’ll never stop introducing new foods to him and now that he is older, he doesn’t protest but instead tries everything (serious progress!), so it is easier.

You can share your “You might be an autism parent if…” moments on two fantastic facebook pages:  You might be an autism parent if. and one of my favorite special needs parenting resources/communities:  Shut Up About Your Perfect Kid (seriously, if you don’t have the book, you NEED their book AND their Facebook community/page.  This was the first thing I read when I realized that this journey was veering way off path (and at the time, through what looked like an impassable thicket, plenty of prickers, nests of dangerous beasties, etc)…  Here’s a link to the book on Amazon: Shut Up About Your Perfect Kid: A Survival Guide for Ordinary Parents of Special Children.

I also got him to eat fresh cherries (not fresh picked, fresh from the supermarket… we have been mostly housebound this summer… long story for another time) WITH the stem and stone intact!  So I’m not rocking the Lady Macbeth manicure from pitting the damn cherries this go around.  Here he is, after I carefully demonstrated and gave him instructions on how not to break his teeth but still enjoy a good, sweet, juicy cherry.

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A frozen cherry did not fare as well:

Found it.

Peace,

Bek

Let’s Get It On.

30 Apr

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I was reading a well-known author’s blog a few weeks ago.  The author had recently tweeted about having a miscarriage at work.  Sure there were the usual comments from the Netiquette Gestapo, and debate from the readers who felt that it’s a common life event and why not bring it out into discussion because it does impact both parties (well technically all three parties… just didn’t want to upset the folks who may happen onto this blog that are pro-life, at least not at this point in the discussion).

Then the discussion turned into the traditional, comment section Manic Merry Go Round of Abortion Debates.

As it turns out the author had spoken previously about health conditions and how it would be dangerous to carry a child.  It was also revealed that she had previous pregnancies that did not result in a live birth.

Then it was rapidly revealed that many pro-lifers commenting not only don’t believe in abortion to save the life of the mother, but that people with health conditions and disabilities who cannot safely carry a child should not be having sex in the first place (because blah blah blah abstinence is the only thing that is 100%, as our friend Rose Nyland found out on The Golden Girls when she sat on a public toilet by accident and worried and worried until those truly so-golden-they-shine-like-the-sun girlfriends of hers gave her a little modern (compared to current policy, the 80’s was modern) reproductive health lesson).

So disabled women (as clearly a disabled man would not be in the market for an abortion for his own person) should not have sex.

Ever.

 

EVER.

Even within the constraints of holy (or wholly secular) matrimony.

 

EVER.

 

 

Oh and god doesn’t make mistakes, so a woman who has a pregnancy putting her life at risk, or having an extreme risk of making that woman unable to care for the child, should carry the child as close to term and then let the wonders of the NICU take over and if the woman admits that she didn’t want the child to begin with and was just a nasty whore, then yay! Adoption! The cure to all conundrums!

Gag.

It’s ableism at it’s worse.  It’s all fine and good to teach kids about abstinence knowing they are going to go screw each other without protection, because Yay! Adoption! (I’m not against adoption but I am 100% against people pushing adoption as a perfect replacement for abortion. It is not a replacement at all. Comparing them is like comparing apples and Volkswagens.)

But disabled people…And disabled people parts and…

Ewwww.

Disabled people don’t have sex.

I mean, how would we. Being all disabledy and all.

On a similar blog, someone said that if disabled folks who have been certified disabled, and receive benefits (to keep them from being more undesirable to society), can have sex then they should be working. As what?  Hookers?  Temps so the Farmer’s Daughter can go on vaca?  What the fuck?!?!?

So here’s the deal folks:

Disabled people do have sex.

And not just to gross out and confuse the heck out of non-disabled folks and make Google’s search trends that much more hilarious.

We have sex just like regular people.

Well, depending on the disability, there might be some modification and creativity involved.

 

And it’s not gross.

It’s not obscene (well, that depends on the individual… we have as many microbrews of sexual adventure as regular folks), and it’s certainly not always for procreation.

 

It may even be for pleasure.

 

GASP. Did I just say that? What if the world finds out? What if disabled people find out they can do things for pleasure?!  (some of us already know and some of us believe pleasure is a fantastic and curious and dynamic beastie deserving of careful field research throughout our lifetimes).   And any pro-lifer that insists they only have a go with their one partner for procreative intentions is most likely (I’m sure there is an exception to this somewhere) talking rubbish.

And it’s not just a gross out factor for some folks, it’s the whole Madonna-Whore thing, but in the way that they demand we be the Madonna, and they can’t comprehend that we could even function as a sex pot.  People with disabilities are often assumed to be kind, and sweet, and because we have lived through or with illness and/or injury and have all these challenges that haven’t killed us (yet) we could only be stronger and better and much more wise than able bodied folks… Then, occasionally, we get all spicy and tell it like it is to teach an important lesson with street wise sass to the wholesome healthy cheerleader type who takes everything for granted on an afterschool special.

We are not that person.

We don’t fit that ideal (or most others, for that matter) or those caricatures.

We are regular people who remind able bodied folks that they could be in our shoes, chair, modified mortality rate group, or handicapped spot at the store.  Because we are, mostly, kind of boring like the rest of you.

Sorry to burst that bubble.

Guess what else? We don’t want your pity.

We would like to be accepted.

 

It would be really nice for people to accept us as human beings.  It would be nice for people to offer to help when we need it and then actually help when we do ask for it.  It would be pretty sweet if we could ask for accommodations that we need to do our jobs, to travel, to be a part of families and groups of friends, without being treated like a burden  or worse, having our differences outwardly ignored to the point of zero accommodation and being shut out of more parts of the world.  It would be great if asking for accommodation (in the bedroom, on the kitchen floor, couch, etc… oh and in our platonic relationships and at work and school as well) wouldn’t be one of the most stressful things ever for those of us that live with disabilities that are not obvious with a glance (Mine is mostly hidden, but I have scars. They tell some wild stories of survival against all odds.  Anyone want to see the one on my back?  It looks like a foot long zipper on my human suit.).

Communication should be (again ideally) that open with our fellow adventurers, and not scary (nerves are fine, fear may float your boat but I have had enough in my life to be all done with the fear as a precursor to pleasure), but it can take a lifetime to come to that understanding, find your voice, and find a partner who doesn’t ignore the fact that you are not just an orifice or appendage.

 

It would be perfect if we could live in a world where we could be ourselves and not be held to different standards because of our disabilities.   I find that living with multiple disabilities is hard, parenting with multiple disabilities is challenging (not the parenting and raising an awesome kid part, but the physical challenges and managing with my level of fatigue and pain and no supports since before my son was born), but really the most daunting challenge I face is the shitty attitudes and stereotypes applied by able bodied folks.  And it isn’t just in workplaces, or on blog comments, it also exists in families.  Ablebodied folks don’t often believe that ableism exists in families, but it does. And it is the worst kind of ableism.  Many of us are happy to educate and I will forgive minor moments of ignorance (with stern correction, of course), out in the world.  But in the supposedly safe havens of our extended families, many of us folk that are living with disabilities (of all kinds) find that we are not quite tolerated in our own families if we require accommodation.  Sure it’s easier to ignore our differences, but ignoring them and ignoring our pleas for assistance (directed at folks that are supposed to love us and not judge us harshly and without explanation) destroys couples and larger families more than an accident, or an illness, or a botched surgery.

Knowing this, it’s no wonder, that some of us may be more timid to ask for what we need or what we want in our other relationships, particularly the sexual ones. We are expected to be grateful and people assume that our relationship partners are giving something super fantastic up by being with us. It never occurs to most people not in the disability community that all humans have foibles, challenges, physical stuff, head stuff, complicated histories (most people with disabilities, this chicky included, are assumed to be the cause of breakups and are blamed for partners being disloyal, though often, because we’ve been primed to feel as burdens, we are the ones doing all of the legwork, making all of the effort, and this couple stuff cannot survive if it is that one sided)…

 

In a perfect world, a relationship should feel like a safe place from which to explore, the world and each other (physically, sexually or platonically). The difficult stuff will always be along for the ride, but that’s part of being human, not specific to disability.  We should all be accommodating each other, everywhere.

So please, remember that we are people.  We have sex. We have pizza sex (even when it’s bad it’s still dinner), mediocre sex, great sex.  We have the same variety as ablebodied folks, and the only limits are our imaginations (and laws, but the same ones which apply to ablebodied people) and because of our different bodies we sometimes get a bit creative. Shouldn’t sex, ideally, be a dynamic, changeable beastie and with the right partner an adventure in communication, respect, decadence, pleasure?   Some of us have that. Some of us want that.  Some of us are happy as solo artists.  And that changes all of the time, just like *gasp* people without disabilities.

All of us, on this big ball of mud, have hearts and feelings and being disabled doesn’t make us saints, or sinners, it makes us human.  Treat us as such. And maybe we will continue to pretend we don’t see you staring when you think we aren’t looking.  But maybe you are just surprised that some of us are intensely sensual beings, and some of us are smokin’ hot too.

xo

B
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PS. Some friends have heard the following comments when people realize they are not only disabled but also have pleasure-seeking sex.

Q: But how do you get an erection?
A: Um, I’m not paralyzed and I’m not a dude.

Q: It’s selfish of you to have a child, what if that child is born with one limb like you?
A: I lost my leg in an industrial accident, you were there when it happened… I wasn’t born this way… *head desk*

Note: I am participating in BADD: Blogging Against Disablism Day!  For more blog entries by some very talented people, please head over to Diary of a Goldfish

pps. I will be covering Disablism/ableism and the side effects of sex, mainly parenthood and women’s rights soon. Promise.

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