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First, a note of business: THE BOOK. Do you want to participate in a compilation of this series? I think it would be pretty cool to compile the posts, self publish and sell them for a few dollars. All profit will be donated to an organization that we all vote and agree on.

Sound good? If so, I need you to contact me and email me your posts!

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 thankyouthankyouthankyou

On to the Series!

A quick recap: 

Week One: My Connection with Disability

Week Two: Coming to Terms with Disability

Week Three: A Letter to My Younger Self

Week Four: Talking Raw, Talking Real: Challenges Related to Disability

Week Five: Connections and Comforts

* all links are still open if you’d like to participate  *

This week:  

Vent: An Open Letter to Someone/Something Who Pisses You Off

right-click-save if you'd like to use this image on your own post/hop
right-click-save if you’d like to use this image on your own post/hop

 

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The writing prompt is optional:

If you’d rather just post the link to another post you’ve written, that’s fine. You do not need to follow the prompt!



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– coming weeks – links not up yet:

Week 7: Golden Moments

Week 8: How A Connection with Disability Has Changed How I See the World

Week 9: A Challenge: Present a Post in a Way You Don’t Usually – write a poem, post photographs or a painting your made…something that stretches you

Week 10: What I Will Fight For

Week 11: My Vision of a Perfectly Accessible World Looks Like This

Week 12: Disabled and Proud, And Here’s Why

Week 13: Celebrate! Pieces I Love

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Re-reading older posts, I was dismayed aghast at how angry my original “chosen” post was. Here’s Take 2.

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Visualize: “Janey”. Her hair is dark, she’s got a Master’s degree in biochemistry, which is her field of passion. A rockin’ job, supportive boss, 6 figure salary. A husband that loves her, one young son. Parents who adore her. I know this woman, and by the way, she has cerebral palsy.

Then there is Sandra. Sandra was molested by her own father. She then spent years years abusing herself.  While she did go to school and receive her bachelor’s degree, she struggled with alcoholism and drug addiction, “band aids” for her pain, before finally reaching a point in which she could find and receive recovery. Sandra doesn’t have a lot of money but is good looking and bright, she doesn’t walk in the tell-tale toe-first gait that many with Cerebral Palsy do; on the outside of it all, she is the one who is “whole”, the one less pitied because she doesn’t have a disability.

But she’s the one who had her spirit, her soul shredded.

So tell me, what’s a “disability”?

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There was a pretty ripping birth story that was posted on my Mommy Group Board a while ago, about a mother receiving the extra surprise of Down syndrome, along with her new baby.

The thing that kills me is a lot of follow up Mommy comments went along the lines of God choosing “them to be mothers of these special babies…” and stuff like that. You know, God-chosen. Special.
I am deeply in love with God, but I think that’s hogwash.

What about it makes sense? I do think there is such a thing as ‘tests‘ – things that happen in our lives that provide an opportunity to strengthen, temper our spirits into some stronger stuff.

I think it’s how we respond to given situations, the choices that we make, that define who we become in the course of our lives. Right?

Anybody can have a disability (it is, as they say, the only minority group anyone can join at any time!). Everyone is sooner or later affected by disability. Be it their own selves or a family member or friend – I don’t care WHO you are, if you are human and if you are alive, you are going to be affected in some way in the course of your life. If you are not already

So what does that make us all? God-chosen?

We’ve all been “touched” by disability (or will be). Why does disability need to be so very ‘special’? It’s a natural and normal part of the human experience if it does indeed affect us all.

Why do we need to say of mothers who have a kid with a disability as being better, stronger, more equipped than mothers of kids without disabilities?

This bothers me.

It reminds me of a time, years ago, when I visited my Dad in his 5th grade classroom. He had a picture of this kid taped on the wall, who was grinning from ear to ear. The kid was in a power chair, hooked up to all kinds of ventilators. A firefighter was crouching next to the kid.

I asked my Dad who the kid was. Dad said he didn’t know. So I asked him why he had the picture of the kid taped to the wall. Dad said something along the lines of the kid just being alive! And smiling! Wow!

I got pissed and I was like, so, by virtue of the fact that he’s in a power chair and using ventilators, we’re supposed to be celebrating him, and just in awe that he’s smiling? That he’s happy? What bullshit! What kind of message are you sending to the kids in your class that go home to loneliness, neglect, misery and poverty? To a parent that beats them? You are saying that because they can walk and don’t use a ventilator, everything is okay? That we need to feel sorry for and “inspired” by kids who use power chairs? If we don’t know anything at all about their life?

Let’s think back to Janey and Sandra.

What if that kid with a disability – like Janey – has awesome parents that love him to pieces? He’ll grow up with every advantage, go to a great school. Graduate and work in a job he loves. Get married, have kids. How stupid is it to assume his life will somehow be less just because he’s got a disability? How stupid to assume a life is somehow more or easier because someone doesn’t have a disability?

My Dad had a hard time understanding what I was saying. Could be because I have such a hard time articulating these thoughts of mine. He thinks I’m angry. I’m not. Really, I’m not. I just don’t understand things, don’t understand this ‘chosen‘ stuff, don’t understand why people need to feel ‘inspired‘ by disability and why things are the way they are.

That awkward moment of trying to put your shoes on, put your kid's shoes on, and your next door neighbor's client is waiting for you to finish so he can go in to her place and get…serviced. And you know why he's waiting and he knows you know why he's waiting.

 

Small tight sort of polite smiles all around.

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Yes. My next door neighbor is a prostitute. She's in her mid-50's, has kids my age. We share a landing and in the first few months we lived here, I wondered an awful lot about this long, long (long, long, long) stream of men that were coming in and out of her door. I wondered aloud at some point to my downstairs neighbors "The Aunties" about all those men, what was going on, anyway? And the Aunties – who get to hear everything thanks to mighty thin floorboards! – confirmed it. It's sex in there, all right. Although, to be fair, I don't actually know if she receives money for all that going on.

 

It really bothered me for a good period of time, then I realized that most of the 20, 30, 40 men were the same 20, 30, 40 men. We knew them all after a while. They were older, pretty normal "nice" guys. Aloha shirt wearing. Community members.

 

Then the men sort of changed and we thought she was back with her drugs (she shakes like a tweaker) – the Aloha-shirt-wearing guys were getting replaced by extremely skinny, extremely pale blokes who like to smoke cigarettes in our backyard.

 

In our backyard. Here. We have Micah and Moxie.

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I've had a bad week. Horrible, even.

First  the Dodge Dart wagon broke down on the freeway in San Francisco then stopped altogether on the Bay Bridge. That involved 3 tows and 6 hours to get home. Later, that same car broke down in the rattiest area of San Francisco besides the Tenderloin: Hunter's Point.

 

Then the Volvo 122-S  broke down on me – over 5 times in one day alone. No tows involved but stops in the middle of downtown Oakland to have me waddling around and checking car fluids with people cussing me out and kids crying. Good times, my friend. Good times. Good thing I'm deaf, too.

 

 

I'm tired, inexplicably nauseous. Heartburn is my worst-best friend. I can't breathe well, my uterus is crushing everything around it including my lungs. My body feels huge, packed, worn. My skin, dried, desiccated and I look at it and feel kind of sorry for Boo, who, fresh and sprung will get a withered mother. Poor kid.

 

 

And in the middle of this? It's marijuana season. The smell of it is all over us, it being that time of the growing season and our backyard being full of plants, grown by our neighbors. Once tolerant of weed, I now loathe it with passion. I feel sometimes like I can never get away from the reeking wafting plant emissions, either the actual living things or the smoking of them. It's outside, inside. It's in my bathroom, my bedroom, comes in through any open window.

 

Back to smoking: my next door neighbor and her "guests."

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My foot has come down all over the place with this backyard-"guest" hanging out, and "guest" cigarette smoking thing. Completely, absolutely unacceptable and not allow-able.

 

The other parts of it, the parts about her being a prostitute, well, they might be harder.

 

Years ago, when I was deep in my religious studies, I thought for ages on that "love thy neighbor as thyself" bit. No Prophet, Manifestation of God ever said, "hey, love those nice neighbors over there, the ones who make you pie and are clean, nicely groomed and have well-behaved kids!". No. the point to it all, to me anyway, is that I've somehow got to sift through the murk and baloney to find something in people to love. Like Jesus, with his disciples and the dead dog. I think the point is to find, as in the case of the dead dog, the gleaming, white teeth in everyone, in every rank piece of decaying flesh that is swarming with flies.

 

Not that, you know, my neighbor's body is rank or decaying or swarming with flies…right.

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But there is this border, this boundary that we have to draw up. Find the good, seek out the good, focus on the good but not let what lacks good to walk all over us. Preserve, enhance and grow what is important to us, protect those that need it. Know how to say, "no" clearly, firmly, compassionately.

 

We're always only going to be treated one way, after all: the way we allow others to treat us.

 

We need to stand up for what we feel is right and still love each other. Agree to disagree. Make sure that ourselves and our own are safe, yet we really do not need to surround ourselves with the comfortable people in our lives, the ones who think, talk, act, walk like we do. That this life is not an either/or: we can focus on the gleaming white teeth and we can hold the view that the dog should really be buried.

 

You know what I'm saying?

Love. We've got to use it to grow more of it.

Love, when it's hard. Love, when we don't necessarily want to.

Love, because it's going to make us happier, in the end.

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I suppose I ought to be grateful I have so much to practice on. With the love bit. Through the discomfort – pain even – of my present,  I get to practice on finding joy, keeping it and holding it close. Looking at the gleaming white of the rancid dead dog's teeth. So to speak.

 

Wish me luck.

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In the spirit of gratitude, here's a great coupon for 10 free thank you cards. xo love you, too.

Tiny Prints 10 Free Thank You Cards

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