Archive | April, 2010

Let’s Get It On.

30 Apr

lip-1

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.

Even within the constraints of holy matrimony. 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!

But disabled people.

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 fruck?!?!?

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 involved.  Depending on the disability there may be a little 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 screw with their one partner for procreation probably is pulling a Pinnochio (get it?  Has wood and tells lies? Bah dum dum tczhhhhh).

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 money or 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 folks 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 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 and this 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. But 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.

Homework, Demons, and Metaphorical Mountain Climbing

16 Apr

We all want our kids to do well.  Sometimes, I know Alex is working his butt off but people who are not me, who do not live with him, who have not struggled to achieve almost every childhood milestone with him, cheering him on, cannot see the effort.

I think this probably happens to most parents at some point in their child’s education, but I have a hunch that those of us with kids who aren’t just “wash and wear” (wash and wear kids are born, hit their milestones, and for the most part only visit a regular pediatrician) have this feeling more frequently.

I sometimes feel this need, this drive, to correct the tiny things, the little oopses, so my kid can shine and people will stop seeing only the little tiny bits that need extra care and all sorts of implements and technical terms and see him as the whole, amazing person he truly is.

Which is, well, what we all want.  It’s just that Johnny (generic Johnny, not a real kid) never got the raised eyebrow from the pediatrician or the talk in the hallway from the preschool teacher (and the business card with the number of Easter Seals on it)… But Alex did. So for me, at least, that makes every victory that much sweeter and as his Mama it makes me fiercely defend what he can do.  And he works hard. Really hard. Other kids in his class have playdates and sports and even siblings. We don’t have time for that. We have Asperger’s (his and mine) and a whole buffet of physical disabilities (mine) that make this “acceptable”(for a typically developing child) amount of homework one of the only activities our family has time for.

I realize that my child may look lazy or confrontational at times or like he just isn’t listening. But he isn’t those things and he is listening.  When his teacher said “Alex, you only do your homework when you feel like it” she devastated him.   Alex doesn’t “feel” like doing 4 hours of homework every night.  Alex doesn’t feel like missing out on all physical activity and fun because he struggles to understand and at the end of a 6.5 hour school day, the last thing he is ready to do is put his nose in the books and pencil to paper.  He needs time and space to decompress. Any kid would.

I give him two rules for his day as he stands by the elevator in the morning, “Have a great day” and “Do your best”.  I am at the point where wishing him a great day seems too loaded, because then he feels like he broke a major rule if he doesn’t have a great day and that’s the worst thing for him because  Alex doesn’t break rules. He can’t. He’s not wired that way.

So we are waiting for our meeting with the teacher.  I don’t think that she really understands our kid. We gave them piles of information (and well crafted summaries, so as not to overwhelm). I feel like they were ignored and here we are.

I feel like we can’t ask for anything because it’s a private school. I feel like we can’t push it because we can’t put him in our local public school. And I’m too sick to home school him and 18 months of zero income and sky high COBRA health insurance and being sick is expensive. These things have left us so deep in the hole that the future is forever changed and we are indeed so very stuck.

Alex broke down yesterday and told me that he hates school.  He said that everyone makes fun of him all day long.

I broke down too. Because that’s my kid. And there is no way in hell (or Florida) that I will let him experience what I experienced at his age and most of my life with my peers and with some adults.  I don’t have to worry about him not being accepted by his parents, because he is mine and no matter the challenge, he will have me by his side, ready to tackle it.  But schoolwork is making up 100% of his days since they bumped him into the first grade.  And if he hates school, that sadness, that feeling of rejection, is riding on his shoulders.  The kid is brilliant, I can’t have his self esteem or his desire to learn squashed this way.

So we are waiting for the meeting.

And I’m compiling bits of evidence to share with the teacher and the administrator that show how Alex’s mind works and that he isn’t being a defiant little brat, but that this is his neurology. This is his wiring.  It is amazing and it makes him who he is and he is a spectacular human being with an incredible mind and a spirit that needs to be supported and encouraged and not squashed like some unsavory kitchen pest.

So here’s the evidence from today.  Here are Alex’s spelling words:

He has a bunch of activities for homework, every week, that involve the spelling words.  The activities are actually pretty cool, as the kids learn spelling, grammar, etc…  But with the amount of homework, Jeff has found that the best way to tackle these things are to get Alex to first transcribe the words onto lined paper and then go through word by word cracking out the activities for each word, assembly line style (or “Robot Style” as Alex and Jeff prefer to call it as it is much cooler sounding).  So I had Alex transcribe his week 3 words 3x today.

Do you notice anything?  I was going to correct him at first…

See how “photographs” (his handwriting has come so far in the past few months!) is above the dotted line on the paper?

I said to him “Hey Alex, why isn’t photographs on the bottom line?”

And he said, because that is how it is written on the list of spelling words from the teacher and he told me that he has to write it the same way or she’ll be annoyed that he didn’t follow how it was written on the paper.

So I looked.

Here it is again:

To fit the word “photographs” in the list they had to shrink the font.  So the bottom tail of the “p” isn’t touching the line at the bottom of the box it is printed in, the way the rest of the p’s on the list do.

So he wrote it above the bottom line on his paper, so it would be precise enough for him to avoid reprimand.

I had him leave it alone rather than explaining it and rewriting it. Don’t worry, I’m not throwing him under a future bus, I will explain it to him but just not until I get to talk to the teacher or we are eyeball deep in next week’s words because otherwise he will flip his lid until he can correct it.  I told him that it was indeed written that way and that I would talk to his teacher about it.

I want to scream “SEE! SEE!” and jump up and down in the schoolhouse.  I want them to see that this isn’t attitude or defiance or stubbornness or just some weird but average kid who demands things his way.  This is MY kid. My wonderful amazing kid who has Asperger’s Syndrome and he doesn’t ever  break the rules.  Breaking rules is actually painful to him.  Writing the word “photographs” on the regular line would have been breaking a rule to him.  And all he wants his teachers and the other kids to see is that he is a good boy and that rules are important and that he always follows them and they can rely on him to remind them of the rules or even teach them new rules, rules that aren’t strange and bossy rules, they are rules that if everyone followed them our world would be a much calmer and happier place.

He occasionally makes up rules.  Like the list of rules he made for Jeff and me when we were upset about something.   He wrote his observation, “They weren’t happy” and his new rule “Be happy” in the little notebook that I used to help him draw paw prints in (I would leave post-its with paw prints around the house for him… it was our own little game of Blue’s Clues).

But other than that he just really wants people to:

Not run in the classroom

Be nice

Use indoor voices when indoors

Help each other

Not tap pencils when other people are trying to concentrate

Not talk when the teacher has said “No Talking” (and he always gets in trouble for talking during this time because he is trying to tell the kids who were talking initially that there is “no talking”)

Know what a good friend he is (he reminds me of this all the time.. I know what a great friend he is, but he wants a chance for the other kids to find out)

Respect electricity.

Are those rules really that far out and unreasonable?

I don’t think so.

And I’m not coddling my kid.

I just need people who have contact with him on a daily basis and are supposed to be fostering a love of learning to know that he is indeed organically different from the other kids in the class.  I need people who have contact with him occasionally (very occasionally) who have not given me the benefit of the doubt to give him the benefit of the doubt, and if they truly love him, to give him that benefit of the doubt while not taking advantage of our overly kind nature and our desire to fit in.

Every kid is different.

My kid is different from all of those kids.

We just need people to respect the differences and not make assumptions about our kid, about us.

I have lived my whole life with people judging me and not giving me the benefit of the doubt, my brain is full of facts to defend every action I have ever taken.  But that stops now.  I am who I am. Alex is who he is.  I’m sick and tired of dealing with other people’s laziness and closed mindedness and I am just not going to tolerate it anymore.  I’m so full of this frustration and anger lately and digging up old bones more than usual because I need to figure out where I screwed up – not in what could I have done differently to not provoke the wrath of various people- but rather what did I do to make them think they could treat me the way that they did.   And there isn’t an easy answer.  This isn’t about self-help books or talk shows. It’s about people treating each other in a mindful way and not always taking the easy and selfish route. And it will be a cold day in hell (Florida?) before I let Alex become a doormat for other people’s demons and desires.  And the best way I can do that is to stand up for myself and be the best damn role-model I can be. After all, I’m his Mama and his best friend, and together we can scale or topple anything that gets in our way.

Chances are though, we will still politely ask it to step aside first.

Then we’ll topple the daylights out it.

*cue soundtrack to Legend of Billie Jean…Glad I hid my haircutting scissors and Jeff’s clippers before I decided to blog this evening*

xo
Bek
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No Returns Without Receipt.

14 Apr

I promise things will be more upbeat and accidental thong-esque shortly.
Really.
Promise.

Here’s some good news: baldguy started training for his census job yesterday! The first work he has had in 20 months! So proud of him! I became an Auntie this week when my baby brother and his wonderful wife welcomed their gorgeous baby girl! I hope to get out to OH later this year (pending me being patched up) to meet everyone in person!

Ok, now back to the serious-ish stuff.

So here are my questions for you today.
1. Have you ever had a headache so intense that you lost the ability to comprehend language? I swear I almost said “NARM!” (Six Feet Under) today because I couldn’t find words or understand them. Alex was sweet and hung out with me on my bed until I regained the gift of gab. He really is a wonder, a gift, a miracle. Best kid ever.

2. (and this one is from our local news station) Should adoptive parents be able to return their adopted children? Vote below!

(sorry. this picture was just too perfect.)

No Returns Without Receipt

I’m a little scared to ask my adoptive parents how they would vote. Mostly because my head is just a ball of intense pain and standing in line at Adoptions R’US while the clerk tries to find the 34 year old receipt in the system and my mom makes my dad handle the return while she browses for a sportier model just sounds like torture.

I kid. Well, there’s always a wee bit o’ truth and honey in there for you.

I’m planning a longer bit on adoption, as it has been coming up so frequently lately- news, blogs, twitter, etc… I just kind of want to put my perspective (as an adult adoptee with multiple disabilities) on these issues… But for now…What are your thoughts?

Is returning an adopted child screaming of equality? The next thing you know, natural born are going to be demanding to be returned as well. And frankly, there are some rather sizeable physical limitations to that scenario.

Anyway,
I will call the doc in the morning. I just can’t get comfortable. I am reading quite a bit though, as the Kindle is light enough that I can lock up my elby-bones and read while resting flat. As of this evening though even pancaking myself on the bed isn’t easing the pain. So I’m up. For now. Until meds kick in. They don’t even take a nip out of the pain, but they make me sleepy and take the edge off the raw pain*-adrenaline cocktail that is ruling my life lately.

xo
B

*and really I’m not a big baby. I have been through some crazy shidoobi in my day, especially with medical stuff. I have a hugely high pain tolerance and between that and my Asperger’s I think I’m not really making how bad the pain really is clear enough to the docs. I’m kind of a goofy girl, but I get really quiet and mellow and calm with pain. I think I calculate everything more precisely, so as to not trigger more pain or damage.

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The plan is…

13 Apr

To be flat in bed until Friday when we should have some test results and my doctor is back from vacation. This is maddening. I have decided that if my temperature heads above 100 again or the pain gets more explosive then I’ll go to the ER. And the worse part of this is that I have to rely on others(the ultimate other, my very own smother) to help me pick up Alex from school and I’m just not good at that sort of thing (insert my puffy stubborn face right here).
I have many update for all of you (and I confess, this post is a bit of a test to see if the updates to the Amazon Kindle feed are working ok)….

Hope everyone is having a sunshiny day.
xo
B

You may have noticed…

12 Apr

I changed the name of the blog.

See it?  In the upper left?

It was Be Clever. But that was entirely too much pressure for this under the weather, under pressure (cue Queen and Bowie) gal on the move.  Ok. Maybe not on the move so much as flat on her back in bed 99.9% of the time as I was under so much pressure it seems that I have sprung a leak of sorts (we are still waiting for test results from the spinal tap and MRI last week… more on those another day. Promise.) – my Monopoly money is on a fancy cerebrospinal fluid leak (CSF leak).

So I really can’t sit up for more than a few minutes at a time before a tricked out econo car with speakers that exceed the maximum weight capacity pulls up with full bass just inside the right side of my forehead.  And then starts blasting at the inside of my head with various automatic weapons. It sucks. It hurts. Nothing cuts the pain. Except hanging out totally flat (no pillows) in bed. Blah. It’s annoying.

Anyway,  I came up with the idea of the “accidental thong” when trying to explain to Alex what a wedgie is. Somewhere along the line I declared that “ladies don’t get wedgies, we get accidental thongs”.

And that’s pretty much the story of my life.  The misadventures of me. The actual me.  The one who gets accidental thongs and stubs her toes and bumps her head on everything. That’s me. Sure, I’m clever. But now that the pressure is off and I knocked off my internal editor, I’d like to have a little fun.

Because this ceiling is ugly, the ceiling fan needs a good dusting, and I can’t find the remote.

xo

B
p.s. If you use a Kindle (either the neato gadget or any of the desktop/iphone/ipad applications) you can subscribe to Accidental Thong via Amazon!
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