Tag Archives: disabled

Heartbroken.

9 Nov

(with respect and adoration for W.H. Auden and his Funeral Blues)

Stop all the clocks  Reverse all progress.
Forget our equality, this is a big fucking mess.
Silence all reason and show off your guns
Bring out our coffins, this air burns our lungs.

Let the victors gloat over our dead
Scribble on twitter “we jacked off big pharma who jacked up their meds”.
Ship away all of our friends who are brown
Let the unchecked police force shoot the rest down

She was my North, my South, my East, my West
Every day of my life, survival, advocacy, work and rare rest
Our health, our water, our families, and access to school.
I thought our liberty would last for ever, but someone shit in the pool.

We are not wanted now by those who have won
Pack up your dreams if you are not a straight, able, white, Christian son.
Pour away our meds and sweep up our bones
For they only care about war and money and defaulting on loans.

-Bek C. November 9, 2016

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
Bookmark and Share

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.

Just keep swimming. Just keep swimming.

13 Jun



Pedal

Originally uploaded by CleverIndie

Physical Therapy (for me) ended yesterday.

The loss of my only undivided me-time has brought up many things.

Lots of tears.

This was my first break in almost 6 years. I had 18 hours where I wasn’t in charge, out of almost 50’000 on duty and on high alert.

I’m exhausted. I’m angry.

The true colors of some people are really shining through, and not in a good way. Having a not-readily-visible disability and a child with different needs brings out the narcissism in other people. It’s partly the myth of the supercrip. It’s partly their choice to live in denial. It’s a whole lot of their narcissism. If they don’t accept a fact then it doesn’t exist. It’s like “La la la let’s pretend everything is ok and then it is! And if it isn’t lets kick the person when they fall to the ground and then call them negative when they tell us to stop or start to cry! She’s dead from our kicking? She is cured of her disability! Isn’t positive thinking grand!”

Ok. A bit of sarcasm (just a dash, right). But I don’t feel like boring you with back story. And positive thinking is wonderful. It’s the kicking and the holier than thou-isms that I have the problem with. It’s also the living in denial part- ever wonder why disabled folks are often depicted with a chip on their shoulder? The loss of certain abilities eventually (over a variable passage of time) becomes accepted fact, but the bitter pill to swallow is the loss of family and friends and the feeling of being tricked, cheated, resented, and lied to by supposed loved ones who invent their own truth rather than bothering to listen to the one person who has experienced it. Try trusting anyone after people who were once at the very core of your world and your family decide what you can and cannot do, not based on any reality except their own needs, and if you try to explain you get labeled as selfish or lazy or negative. And if you do what you can to help them with their needs it is never enough. Any which way, you wind up being judged rather than accepted.
It’s a losing battle. I feel stupid for even trying to fight it. I have to learn to conserve my energy and to say goodbye to those who cannot see past their own noses.

I’m in that really weepy (ok, sobbing) part of building up to cutting off my hair (not really going to hack it off, yet), blasting “The Warrior”, and moving stompingly forward.

But I’m tired and my body really really hurts.

No support for this broken body.

Fact. Not whining. Not negativity. Just fact.

I’m putting this out into the universe because my voice is hoarse.

Difficult Day…

14 Oct

Love Oma…

Originally uploaded by CleverGirlBek

Had the eval review with the county education folks…

Kiddo has significant impairment and they feel he needs to be in a classroom dedicated to special needs and social communication and fast.

They are suggesting a school that is at least 30 minutes away….That’s 2 hours of driving. 5 days a week. Full days.

They said he can start tomorrow if we can get the public school enrollment stuff together by then.

Finally the psychologist said “or we can work on a gradual transition”….

Lots of leg work to do…

Lots of information to understand…

Lots of lack of funds to keep him in his current school and beef up his therapies and total lack of support from the school district unless he is in the intensive setting.

Frick.

Called my dad to talk about something else and just kind of let it all out.

I mentioned something else about my mom and he mentioned that she has other things going on, since her mom died.

Yes. My Oma died, apparently, on Monday. No, it wasn’t unexpected. She has a major stroke a month ago and has been in a coma and receiving hospice care. She lived in Germany. When I was a kid we visited her and Opa every summer in their tiny little storybook town.
When Alex was born, my mother wouldn’t let me send pictures to Oma in the home, because Oma didn’t want pictures of the baby taking up space. Ouch. Have I mentioned the narcissistic control of information in our family?

Anyway. I’m sad. I’m overwhelmed. I’m having a really hard time functioning right now. Part of me wants to pour my wee bit of energy into my raw materials. But the rest of me just can’t move. It’s like when you overfill your cereal bowl as a kid and then put the spoon in to get a bite and…well, you get the picture. My head is at maximum capacity. I’m fixed on one spot. Eyes wide. Tears arriving at regular intervals.

I’m going to bed because my brain and my heart are just so overloaded with the events of today and we have decisions to make but so much conflicting information. And at the heart of it is this little boy who is just so sweet and loving and overly trusting and who sounds like a freaking genius but the reality is he cannot practically use language to communicate. He doesn’t converse. He announces. He may be on the ASD or have Aspergers (scored “highly probable” in both) but to have the specialist look at him we have to take what is a leap of faith for most parents, but we also know we can’t do that. We also know the nuances that make our kiddo unique and wonderful but also make him eligible for these services, also put him at risk for many of the ills of our school system, and of course, our district says our concerns are unfounded but apparently they *have* to say that or they just don’t read the freaking newspaper. Meanwhile, they follow the “hear no evil, see no evil, speak no evil” theory that occasionally gets broadcasted by a frustrated and angry parent but then disappears from view before anyone can actually view it. Also, I just can’t block out the comments on most of the articles about autism and special needs and discipline in our great state of Florida. The overwhelming majority of comments are from people who think that autism, Asperger’s, and the like are nothing more than bad parents and spoiled kids. Some frustrated mom of a kid with autism said “if your kid had cancer, would you try parenting them into remission”….

Anyway.

On most days I am a mac.

Today, I feel like a PC.

And I really need to reboot….
xo
b

ps. the chest in the picture was made by my oma for my childhood dollhouse. I didn’t know she died yesterday. But out of nowhere Alex went to explore our shelves and my treasures, and picked this up…Then he picked up my little glass/mirrored cube with my Swarovski hedgehog/porcupine and birthday cake- gifts from Julie, (dearest friend and my birthmom,) Julie’s mom, my biological grandmother, died before Julie found me. She loved glass and funky jewelry. Alex was intrigued. I was reminded of how interesting life is and how it reconnects people and spirits in the strangest ways….

The Truth Freaking Hurts.

24 Sep

For the past few weeks I’ve been having mega-low energy.  Lower than usual.

Because I haven’t been the most physically active Mama over the past few weeks (or rather less physically active than usual because my energy is low and my muscles aren’t obeying lately) I have been trying to make time for kiddo combined with a little rest…We are trying a more structured afternoon here, so having this sort of Mama and kiddo time of any sort seems to be just what kiddo and I needed…

This week so far I am feeling a little better and actually getting around the house a little easier and even took some new photographs, reorganized some work trays, and plotted some other things I need to do on my calendar…  So, I took a little quiet work with me so I could get something done while I was mildly alert and while boyo was eating his snack, while we both watched a movie…

Half way through the movie, kiddo started rearranging my work tray, as my work wasn’t making a pattern and he needs patterns…. I asked him to please stop and he said he wanted to help me with my work so I wouldn’t have to work so much.

I felt like such an arse.  I haven’t been working that much but I do most of my work when he is getting home from school as the morning is a bizarre game of fatigue just running me down.  I wake up. I get out of bed. I go to the kitchen to make tea.  Before it is ready I have to go sit down on the bed but I barely get there because my limbs are too worn to propel me.  This goes on for a couple of hours. Once the 2 cups of tea and the diet dr. pepper kick in along with my ADD meds, I usually have around 2 hours to do whatever I have to do.  This is going to make me lose my last marble.  I went through similar fatigue in January and I stopped taking on new custom work.   I hope this fades faster as I really do miss being at least mildly productive and I miss the interaction, the dance, that is the custom process….

Anyway, I was talking to kiddo and I asked him if he likes spending movie time with me in the afternoon (his dad is doing the active and more focused work with him) and he said he did.   As it turns out he wants to spend more time with me and doesn’t feel like I have spent time with him.  I get this, I do. I understand it.  The balance is elusive for moms who are healthy.

I asked him if he remembers spending time together when he was a very little guy and he said he did. I asked if we had fun and he told me that we went to the doctor’s office.  He is right, we were in doctor’s offices for his stuff and my stuff, at least twice a week for his first few years.  But that broke my heart.  His most vivid memories of me from his earlier years were in doctor’s offices, and going to sleep at the hospital and waking up with the booboo on my neck.   These things make him very sad. He told me he is worried.  “About what?” I asked. “About you” he replied.  I replied, “that’s funny, I was worrying about you!”…And then I broke down.

I guess somewhere, deep down, I was hoping that maybe he wouldn’t remember.  Or that those things were our normal wouldn’t bother him so much.  But they do.  And they bother me too.

%d bloggers like this: