MUSIC, REFLECT, SURF and READ

I'll start this new post with some music by Miles Davis; https://www.youtube.com/watch?v=F3W_alUuFkA

Listen more closely. That's my life lesson from last week when I was pondering my ways. Communicate better. Always make agreements clearly. Pay attention.

Last week, I surfed across this gutsy disability advocacy group, http://bolshydivas.weebly.com/. Interesting stuff from Aussie land.

Got into an interesting conversation with a friend after the shooting in San Bernandino about guns. I'm not ready to carry a gun yet. Are you? Her perspective was how grateful you'd be if you were somewhere and there was a shooter and someone in your group had a gun and could defend you. That's true, but I'm not used to thinking about people around me carrying. I grew up through the Vietnam War, the Civil Rights non-violent movement and had grown into a 58 year old pacifist. I like to read Christopher Hitchens and watch his debates on youtube. In one, he talked about a the compromise of a well-trained militia in exchange for the military-industrial complex and went a little more in depth about the Second Amendment. That sounds like the track I'll continue in. I'll probably be educating myself more on firearms, just because it sounds more and more like I may need it.

This women's disability group is in England, and inspired by Frida Kahlo, hence the name;

http://www.sisofrida.org They're focused on the Arts and were having

a Film Festival with 2 movies: “Margarita with a Straw” and “Chocolate”, from Thailand. If I find these movies on Netflix or the library or anywhere free, I'll try my hand at reviewing them.

Gregor Wolbring is an interesting guy with a disability in this video by “Rooted in Rights” https://www.youtube.com/watch?list=PLaYgKAZMUNMx-XDaXffB0PE6OJBq_MBCr&v=uc5P3URLiiA This is their Arts Selections series.

I'll leave with suggested reading: James Baldwin's “The Fire Next Time”, what I'm reading currently. He wrote so honestly about his life, always pushing back against white superiority and homophobia on the cutting edge, without bitterness and with a whole lotta love.

I gave myself the present of a camera. Next time, pics~

Please leave a comment/writing criticism, etc., so I can figure out if that part of this blog is working. Thanks! And here's hopes you'll have a relaxing, loving Winter break!

It's Always, Always About Educating Yourself

http://feministsonar.com/2015/11/accessibility-and-gatekeeping/

Pamela from Absolute Total ( my health insurance, Medicaid) came to do a home visit. They say they're just wanting to make sure I'm getting the care I need. She was very nice, did a med history and quick vitals thing. Asked a little about home. Very nice. Did her job well. She was personable.

There was a death in my extended family. Granted, it was someone I didn't really know. I don't remember ever talking to him, I may have. I hung out more with his sisters, my cousins. But, we were still blood. Same grandparents. I loved my aunt, his mom. In fact, I live in the house where she last lived. Robert, here's to your life and the way your death made me think more about how life is precious and I don't want to let go of it, but I will have to one day.

I was on the phone and e-mailing again this week for self-advocacy and accessibility in my town, Summerville, SC. Known for it's pine trees and azalea's and its fantasy of keeping this a small town, it's really not. It's a little backward when it comes to thinking about the disability community and access to its Town Square. The 21^st century really has come and a lot of things are changing. I really want to see the things I've asked for to be done. One was an accessible door at our local DSS building and the other was to have the curb cut in front of a restaurant on the square, Single Smile Cafe redone. I've tried the curb cut with my rollerator and there's a crack that can catch rollerator wheels and throw someone off balance or cause a fall. Going down the ramp, it slants to the right that causes a W/C (I use one at times), to roll down towards a rain grate and then it's hard to push out of, leaving the person in the flow of traffic. 

I've had some progression in muscle loss the last few weeks also. My right thigh is weakening. That was my principle weight bearing leg on walking down my ramp. I've used my power chair a lot more this weekend. I spent as much time outdoors as I could. Our weather over Thanksgiving weekend was like a dream. Sunny, warm during the day with the last of our fall color. Leaves falling continuously. Spent a day raking a walk for my chair to my compost pile. I plan on letting leaves build up to make beds of composting leaves, with just walkways raked. Think it'll also help with the coming rain and run-off. We have mostly sand in the yard.

On checking my e-mail from the Voc-Rehab resume builder, I now have a beautiful looking resume. My job placement specialist thinks I need to have more experience and suggested volunteering. I'm already volunteering my time and energy on local advocacy and commenting on blogs and articles about Disability issues. I'm going to ask my local independent living counselor for help with this blog. I need a little technical help with the layout. Or maybe I should just start a Facebook blogging page?

The following was a comment I tried to send to Rand Paul's Facebook page, but it wouldn't let me post at the time:

Was here trying to find your interview w/ NPR and what you said about ADA. Sounds like you haven't read up on the history of ADA.

The community of people with disabilities is NOT going to go back on the hard won access acquired so far. Every person with a disability has to work at getting access of some kind almost every day of their life. Something that people without disabilities don't even have to think about. Maybe you should try going about your daily business in a wheelchair. How about taking it on a flight with United? It's not the fed who made ADA, but the people, doing it the way they had a right to.

http://dredf.org/news/publications/the-history-of-the-ada/ This is an article on the history of ADA.

https://vimeo.com/channels/504sitin This is a cool video of the early Disability Community protest work.

Anyway, hope this helps someone to see the process of going ahead with your dreams, however agonizingly slow they may be.

Last week, I wrote about some music James Baldwin liked and I wanted to give credit to Frank Leon Roberts. I finished reading Baldwin's "Another Country". The "other" country, I get the feeling, is love. It's about unconventional morality and the uncertainty of life when men decided to love each other, a married woman with children decides to leave her marriage and a young, hurt black woman decides to love a white man. It takes place in France and New York, I believe in the 50's.

I found this site, http://www.disabilitynewsservice.com/norwich-wheelchair-murders-will-alert-readers-to-scary-disablism-author-hopes/
Is it a new genre of writing, "crip-noir"? Love it. Needs to go on my reading list. 

Sometimes I walk my dog on a leash while I'm in my power chair, but I don't recommend it. He's almost tipped me over to dash after a squirrel and came close to a vet visit after fighting a loose pit bull. I'm only staying close to my house now. Away from all the weird possibilities.

I've been having to do some access advocacy. Anyone who has a disability knows what I'm talking about, it goes with the territory. My latest skirmishes are with DSS's inaccessible front door and the Town Square's crappy curb cuts. I'm in exchanges of e-mails and calls with the local contacts. They'd like to make appointments with me to discuss it more in depth. I'm trying to keep it at the email level because where do they think people with disabilities come up with all this free time to bring all these things to their attention and keep on it until there is some action? Isn't that their job? Aren't they supposed to inspect these things and stay on top of them? OK, before I start ranting, suffice it to say it is a good thing to learn to advocate because people will come after us. I'd just like to find one other person in my area (or more) who want Disability with Dignity. 

I came across this commencement speech by Adrienne Rich, just a short take out; "there is a more essential experience that you owe yourselves, one which courses in women’s studies can greatly enrich, but which finally depends on you in all your interactions with yourself and your world. This is the experience of taking responsibility toward yourselves.  the most important thing, which is that clear thinking, active discussion, and excellent writing are all necessary for intellectual freedom, and that these require hard work."  I want clear thinking, more focused, discussions about current events and free intellectual expression. Easy to say, hard to do.

In my personal life, I've spent time worrying about finances while living on Supplemental Security Income and SNAP. I'm still working with Voc Rehab to find work, specifically adapting my resume to include, or work around my disability and the years spent as a stay-at-home mom. I have a rear power chair carrier for my car in the works.  I'm better off than a lot of people, with my extended family, the wisdom and experience of my years and my degree.

So, another interest over the last week has been to settle into some deeper study of critical thinking. I'm using this:
http://www.criticalthinking.org/pages/how-to-study-and-learn-part-two/514
and this:  Socratic questioning series, disk 1 part 1, YouTube

My DD and I have cooked some wonderful food and I've finished Twain's "The Adventures of Huckleberry Finn". Fun reading and insights into the human heart from our American history.

One more little gem: "The Disability Studies Reader", free to read online;

 https://books.google.com/books?id=IzBtbhdu68MC&printsec=frontcover&dq=disability+studies+reader+4th&hl=en&sa=X&ved=0CDAQ6AEwAGoVChMIn7a5sr3lyAIVRhs-Ch2eRAxN#v=onepage&q=disability%20studies%20reader%204th&f=false

 

ALWAYS BEHIND

I'm desperate to get this on my blog. It should have already been up, or at least I wanted it to be.
If you believe in time, as I do because it doesn't believe in me and goes on anyway, I wanted to be regular about publishing.  Maybe it's because I'm learning how to pay my dues. All my learning leads to more questions and more understanding that this is something I've got to do because I want to. For me. Wanted it to be more polished. Without further ado; literature, music and current events.

What do I need to be doing? Writing needs to be universal, that's what Azar Nafisi says. This writing is art. What did James Baldwin say? Go back to your roots, the beginning and tell the truth the way it should be.

Azar Nafisi wrote “The Republic of Imagination”. In it, she forms a river tributary that shows her love of learning about Life and her love of books folding in some literary criticism. What is literary criticism? When you talk about books with conscience and heart.

This month, we had our 1000 year heavy rain storm, my step-dad Bob just came over with the 20 ft. ladder, leaned it against my back porch and climbed onto my roof to look for any damage. He's 84. 

He's crotchety and hard to talk to, so I don't talk that much. Just wondered out loud if the roof was steel. He says it is. “That's a roof on a roof”. I asked if it was about 20 yrs old, he says no, more near 12 or so. He climbed down shakily, moved the ladder down onto the ground, picked it up and walked around the back of our places behind his fence to his back gate to get the ladder home. He carried it in his right hand and I know that ledge behind our places isn't that wide so I worried about him sliding down into the drop off into our swamp. But he was ok. I found out later that he'd built up the ledge, making it more of a wide walkway. 

Music that James Baldwin liked. Bessie Smith was his all-time favorite muse. Her voice carries him through the writing of "Go Tell It on the Mountain" and "Another Country". He was also quite fond of Billie Holiday, Miles Davis and John Coltrane. He and Ray Charles performed together once as well, on a one-night only Carnegie Hall event.

Https://www.youtube.com/watch?v=j7m7Pn1KNdo Music James Baldwin was involved in.

Ever noticed how Baldwin's voice sounds like Maya Angelou's at times?

Letters to a Young Contrarian” by Christopher Hitchens. There was a good line last night; ...the moment of near despair is quite often the moment that precedes courage rather than resignation. (pg.86) 

Any way, I'm very unsatisfied with this as it comes out of 25 other pages for October. And I left out credit to the name of the man I met on FB who took the time to share Baldwin's musical tastes with me. Thank you. But I've learned that I need to focus my writing down onto things I'm reading, watching, and listening to and how it comes out in my life. Further credit to my friend Trisha Geiger who helped with editing. It's not her fault I jump around so much.

Caravanserai

Caravanserai. Heard this word in Hitch-22, by Christopher 

Hitchens. Sounded intriguing. Defined as a place of shelter and 

hospitality. Southern hospitality? Yep, I'm from the south. I just 

like how the word conjure's up images of traveling and tents and 

since I'm disabled, this is going to happen pretty much in my mind.

This blog got fuel from my local Independent Living Center's 

counselor asking me,  "What's your definition of independence?"  

What's an independent living center, you may ask? If you have a  

disability, you can find counselors (also with disabilities) to  

get support and ideas about  any problems you may be having. 

For instance, when I was thinking about going for a college degree.


"Injustice in the end produces independence"~Voltaire. Suffice it 

to say I needed to leave a marriage gone bad. After three years, I 

have a two year degree in Human Services as a Generalist. 

Reading and college got me out of a very miry place.  On the way, 

I traveled along a spectrum from very religious to being secular. I 

suspect it's somewhere on the scale before nihilist, and I don't plan 

on going there.


This will be a blog about my process. My memoir. I'll write about 

my interests like reading. I'll post about living with my disability, 

muscular dystrophy. I read somewhere there are about 200 

varieties. I happen to have FSHD. Faschio-scapular-humeral-

dystrophy. I was diagnosed about 15 yrs ago, have no clue to 

where I got this DNA. It must have skipped 3-4 generations. 

So, now I'm ready to pack up and get the Caravan moving again 'til 

next stop.

Where A New Writer Learns The Way To Go

     I'm a beginning blogger and just found out the 

"save" button is a little mysterious. I'll have to 

read "getting started" stuff.(While editing five years 

later, I still haven't.) I didn't have a computer or

internet until I was over forty. This amateur blog is 

my process of teaching myself to write.

      I got my love for writing from reading. I finished 

Hitch-22, Christopher Hitchens' memoir. How to do 

him justice? He's a personal hero because that man 

could argue expertly and reasonably. He always 

knew the right history for the debate, (American & 

World) and he despised ignorance that kept political 

and religious leaders in power. He was a foreign 

correspondent and saw totalitarianism in Sarajevo 

and Iraq among other places. He made writing look 

easy. He loved the United States most of all 

countries. He was a lover of true words.

  I've also read Reading Lolita in Tehran by Azar 

Nafisi who was an professor of English Literature in 

Iran. She and seven women met in her home 

once a week for two years, 1995-1997, to study life 

from fiction. She taught at university over time from 

open culture to extreme religious restricted 

conditions. Women were required to be in full, dark 

head and body covering with only the oval of 

their face and hands showing. Women policing them 

in the street could look through their handbags for 

cosmetics, no lipstick allowed. In the first thirty 

pages or so Ms. Nafisi describes how she came 

to her decision to study and which books, her  

apartment where they met and the women who 

came to the first meeting. 

     At that time, I read online about the Syrian 

refugees desperate to get away from the war that 

was blanketing the region. I saw young children 

washed up dead on a beach in Greece. I just don't 

understand. 

     I write from my dining room table in a trailer  

behind a mom & pop store that belonged to my 

maternal grandparents. I can sit and look out my 

kitchen window and see Live-Oak leaves from an 

ancient tree waving at me. 


    I want to write about about living with a 

disability, facial scapular dystrophy which is a form 

of muscular dystrophy, religion, food, gardening,  

music, art, pets, being a mother of six adult children 

 my past and writing.

(Original blog 2015-2016 edited, updated, 2020)