By Midnight Tomorrow , I Need To:

1. Find gynecologist, eye doctor, orthopedist, dentist and PT
2. Buy juice, toothpaste, and new electric toothbrush
3. Get receipts from CVS
4. Put more $ on RIDE account
5. Call Olivia for an update
6. Rewatch the debate and finish the first trump article
7. Start the Trump and activism
8. Do research and behind World of Tomorrow review
9. Write fiction
10. Call mom
11. Call housing authorities

WTF?

I am not feeling well and was none to happy to drag myself from my nice warm bed this morning and deal with the hotelier where I’m staying while my housing clusterf$$k gets resolved.  But the man yesterday told me I need to go to the front desk every day. This is news to me.

But I go anyway, because I don't want to make trouble for myself. I am there for about 2 minutes, literally. The nice lady who is there says that it’s fine. She does what I ask and even makes sure tomorrow is dealt with so I don’t have anymore issues.

I go back to my room and tell my PCA (personal care assistant) what happened and how I’m totally confused and a little bit pissed off (as I am still not feeling well). I would much rather have stayed in my aforementioned cozy bed instead of getting dressed and going down to deal with what turned out to be nothing.

PCA’s response, “Maybe he has a very sad internal life.”

Heartache

Those moments that occur when your born into one of these bodies. The moment able-bodied people don't get; although the good ones empathize. It can happen over e-mail, social media, or the telephone. Sometimes even the television Is how you find out another someone is gone; although that's worst case scenario.

If they’re not among your close cohort you exhale, Thank God, and feel guilty.

You may have known them, but you knew of them. Worked the same campaigns. Attended the same meetings. Used the same service provider. No one in the gimp world is that isolated from anyone else. That’s just how it works.

You friend people on social networks who you’ve never met because they’re your friend’s friend. Never mind that you may have met the first friend in person. Someday, of course, you plan to at a conference, a con, or an action. However, your schedules are so packed, your health so variable, and your money so scant you can never seem to coordinate it. You decide to house them because you understand what it's like to need somewhere to sleep and pee while you try to change the world.

Too often, it's the people around that bear the ire that's always under the surface. The anger seeps out when someone’s hospitalized, sick, or worst yet deceased. The people most likely to endure the outrage have learned not take it personally. They’re not the reason. They understand that if they're smart enough to still be in my life.

Tonight is another one of those worry nights. I'm not even 40. No one my age ought to know death as intimately as many within the disability community are forced to deal with it on an ongoing basis.

Now  I know what some readers are thinking. I would have less grief in my life if I had fewer friends with disabilities. That's as may be, but I would also be much less sane.  Even the most awesome non-disabled person is only so capable of understanding what any person with a disability (PWD) copes with on a daily basis. I need my PWD friends. That need just means I spend more time fretting than most people do.

Kick Start Your Creativity- Day 4

Assumptions... As a person who works in social justice l shouldn't be and I hate when dominant culture people exhibit the behavior towards marginalized individuals. However, I do it all the time I don't mean towards like obvious bigots, actual gay bashers, or the kind of asshole who stops me in the street and says, "If I were like you I'd kill myself." This really happened on the street. I'm not even talking about the Holocaust denier that my friend accidentally found herself on a coffee date with. Those people are pretty clear that they have something wrong in their wiring or at least a definite lack of social skills.

I'm discussing the person who truly thinks that they would stop having a life if they needed someone to help them pee. They wouldn't. But are we, the people with the knowledge, making it a point to be publicly visible at movie theaters and in classrooms? Do we put ourselves out there as candidates for those local offices that are frequently unfulfilled?

Are we the first people to risk ourselves by reaching out to a new person who is where we were a month/six months/a year ago? When all we wanted was someone with some answers to give us a hug and tell us that whatever new identity we found ourselves suddenly inhabiting. An identity that many of us were wrongly taught was the ticket to a fate worse than death. Whatever marginalized community we are now a part of chances are we've learned. Learned that being our authentic selves beats our best day of passing by such a profound degree that it isn't even a competition. Learned that while being true to ourselves may have cost us some relationships most of the people who truly matter are still here even if our choice made them examine somethings they always thought were true. We have also met new people, who may share our new identity or may not, but at least they met our real selves. Isn't that worth every tear we've shed and every time we doubted? Why aren't we shouting our new wisdom from every rooftop?

Why aren't we deciding to be there for the next person in line? Why aren't we reaching back for them when they're to scared to reach for us? We owe that to the person who was there for us. If no one was I am sorry and there should have been. But because your needs were unmet doesn't excuse you from your duties. Be there; don't treat someone like you were. Repeating what was done to you doesn't erase your pain. It inflicts it on someone else. No one gains accept the people who spent your life trying to teach you that you were unworthy/incorrect. Don't give them evidence. They already control the airwaves.

 Live your life as well and as publicly as you can and then live it more publicly than you are comfortable with. Be the counter example. Be visible. Be loud. Kick assumption in the cojones! You deserve that life and, perhaps more importantly, whoever is watching you, their authentic self barely daring to peek out behind those false eyes you remember having, but wish you could forget, requires you to make that sacrifice and risk being visible.

Kick start your Creativity- Day 3

The Power of Associational  Thinking

Today's Prompt: What would be a radical thing to do?

Love whoever and use the feeling as a resource (with their permission of course, once bitten). I want to audit an interior or furniture design class and use the concepts learned to write new stories. Use friends and surroundings more as material. Actually plan to smell the flowers with Harriet. Use the Internet to explore things and experiences that are hard for me to access. Find a way to fly again, just to get over my terrible Utah memory. Be sick and use it as material, not just sit and wallow. But pay attention to the actual feelings of a runny nose, scratchy throat, whatever.

Non-fiction writing: How cheese steaks send me home, how my allergy sometimes causes me to make bad dietary choices, what's first at the buffet (Michael Pollan). Also, the fact that Mexico is taking on big soda and the Australians are confronting anti-vaxers and we are doing neither. Work on the wheelchair bed pan and write about how it changes (or doesn't change) my life.I would like to volunteer with parrots? Travel writing: Take a trip to Utah and write about it, ride the MBTA from end to end and get out at each stop to explore/eat/play. Meet Paige!

 Listen to gaming sessions and mine for story possibilities or phrases- must explore snake oil (game within Robyn's game). Just found out its a real game for sale on Amazon- $19.99 (it's so mine the next time Robyn gets an Amazon order. Best creative tax deduction ever. 

Use movies, books, other media as a way to create original material. Like the Terminator that led me to wonder, "How would you parent a kid effectively if you knew they might need to save humanity one day, but you had manipulated things so that the big disaster didn't happen for now. How do you make sure their ready in case the worst happens, but still make sure they grow up without psychological issues, because you want to prepare them to be a leader in whatever world. Make sure to pay attention to this in Star Wars.

Kick start your Creativity- Day 2

First off, I want to let people know that this overall topic of creative blocks and the reason for them is hard for me to discuss because some people won't be happy with what I say, especially as I am choosing to put this on one of my blogs. However, I am trying to walk in truth here and that always makes certain people uncomfortable.

The List:
1. Other people's opinions are #1

I worry too much about how others will react to what I write. If they will be offended or whatever. I use people and situations from life, but often people portrayed don't view their behavior as fictionalized or several events rolled into one.

I also worry that when I write about legitimate concerns in a social justice movement that I'm part of (for example, lack of accessibility at a progressive event) the "other camp" will use that as a reason to undermine the broader movement that I agree with. I don't want that to happen so I may not raise those concerns. I need to remember that the most harm comes not from raising issues, but from not raising them.

2. My perfectionism.

Many is the time when I would have something already to go and then decide it just wasn't perfect enough. If I really respect the person or publication I'm sending it to, so much the worse. Being part of this project and having made a commitment to get something up every day, however rough a state it's in, is a big step for me. Also I am looking into joining an online group so I can get support from other people who are dealing with the same thing. It would be ideal if the other members were also artists, as we have a particular set of issues that I feel are unique. However, as I have made a serious commitment to confronting and conquering this in 2016, any "perfectionist anonymous" will do.

3. People who assume they know more about what I need than I do

Before I go into this, I want to clarify that my relatives are quite good people, but as happens frequently they just don't understand how my life works on a daily basis. For example, I was running a Gofundme and not a one of them gave so much as a cent or even shared my post. I know what it's like to be poor, but you can at least share.Isn't that why we are members of social networks in the first place? I'm more than slightly bitter about this.

Also they expect me to have the life and opinions that they do. Not going to happen. We live in very different worlds. This is not to say they don't empathize with me. They do, but empathy is not the same as lived experience. I keep trying to explain this. I hope the last attempt worked. Frequently, I find it easier to talk things out/get support from other people with disabilities or even strangers became they are more likely to get it and I also won't be as emotionally invested if they don't.

Furthermore, like every other person, I may not know about a piece of assistive technology that will greatly improve my life, function, or output. Yes, I know more but keeping up with every single new app or program is unrealistic. And sometimes it may be unfortunate that I got a piece of kit that informed me of a major upgrade after I bought something else. I know this is annoying and money doesn't just appear because I want a new shiny thing.

However, I wonder if the people who are lecturing me about that actually realize how frustrating it is for me to discover that there was something which could have eliminated or mitigated a major problem in my life, which might have made work as an anything more doable for me or how much I struggle because I know I'm capable of doing higher level tasks, but always need to balance my creative desires with the practical side of what it will cost me in terms of function to do something, I realize that they don't know this and half the time It's my fault because I decide not to mention whatever is happening and risk being hurt again when they don't get it.

Also, anyone who actually bothers to know me would realize that I am not one of those women who needs to have the latest whatever. I have pants from the ninth grade that I still wear. Also, I put quite a bit of stock into being an earth guardian. One does not run for office under the Green-Rainbow Party or spend years in love with a tree hugging environmentalist without acquiring somewhat of a commitment to our planet and, by extension, the concept of reuse.

4. Society

On the whole, we are taught not to value artists or pay them well, especially before they have prove our economic worth. Like that matters! And we wonder why the world is in such a state. Old Navy even briefly ran a campaign telling young people that an artist wasn't a good thing to aspire to be!

Of course, I know that I won't be able to change society's opinion on my own. My new goal is just going to be not to let what other people think I should be doing effect me so much!

Kick Start Your Creativity- Day 1

Note: I'm doing a 30 day 'Kick start your Creativity' online workshop. Publishing a post every day will also allow me to confront my perfectionism devil because nothing posted in one day can be perfect and I know that.

Success would look like having begun a few of my long planned stories, especially my Sam novel, which has been running about in my head forever. Sam deserves to have a life outside my brain where she has lived for decades. 

God, I treat her like she’s a real person. I guess that’s because to me she always has been. I just had an inspiration. Suppose one’s characters could communicate with them (subtly and with a lot of effort on the characters’ part). In the fictional world, writers are called flesh people

I need to finish my Matthew Shepard\Laura Hershey chapbook. I began writing it in 2010 when I attended fellow disability rights activist and poet Laura Hershey’s  memorial celebration and then visited the site of  martyr Matthew Shepard’s murder in Wyoming.  It’s mostly finished. I just need to write a few more poems. I want to have a book launch party on October 12, 2018 (the 20^th anniversary of Shepard’s death).

In 30 days, I want to be writing daily. I want to have secured an iPhone/iPad predictive typing program because my fingers and vocal cords are more important than money. Typing and using voice recognition are stressful on my fingers and vocal cords because of my cerebral palsy.

 I’ll have completed the rough draft of one of the ‘A Netherlander Responds’ essays. I’ve been planning a disability-centric response to the hallowed “Welcome to Holland” essay by Emily Perl Kingsley, published in 1987. Netherlander is the official term for someone from Holland, according to Wikipedia. That's the second new creative inspiration type thing/knowledge drop  that has happened in this 30 day project so far., Not bad for day one.

This famous essay is designed to provide new parents of PWD hope and knowledge that they are capable of thriving iduring the (often) unexpected task of helping their child with a disability grow, accomplish, and become.  The only issue is that this wonderful essay doesn’t provide parents any insight into the lived disability experience. I feel this is a problem because it doesn’t include any advice on how to make sure their kid understands disability history, is self-empowered, and has adult role models with disabilities (to name a few key points I’m  going to highlight). In addition to completing a rough draft of one of the essays I want to outline the whole project. 

As far as my emotional state in 30 days, I hope to have  rediscovered my writer mojo. I’d be earning $100 per month.  I find the fun in writing again. I lost the art when it became about the economics. I need to find a balance. Hopefully, the right predictive typing software will allow me to do longer projects and not focus on paid to post shorter pieces that pay low and make you live hand to mouth. 

The last thing participants are supposed to consider is this quote. "Every day is a new opportunity to make a new happy ending" anonymous author. This speaks to me because I've had a hard couple months.  However, as long as I'm dead, I have abother chance to redeem myself.