Public Transportation, P/C Mobility and Me

In February, I went to CARTA offices (our city's public transportation) to get a Tel-e-ride ID. It's for a van that can give me and my powerchair, (P/C) a ride anywhere in the area for a low cost. They're sending me the book that goes with it in the mail. Traffic was just crazy, it always is now. Any time of day, it's like rush hour.

At CARTA I parked right in front and just had to cross the driveway where buses drive up and drop customers. There's a door in the side of the office, next to what looked like an air hose, laying uncoiled on the ramp. I walked around it using my walker to the door. A young man held the door for me, there was an older woman standing by the door, I thought she wanted to come out so I said “go ahead” (come on out) but she said “just go ahead”, so I did. She was waiting for someone. The woman at the main desk, with pretty purple earrings asked, “Are you here for the ID”?

“Yes”.

“OK, just walk down to that black chair and have a seat, someone will help you”.

So I walk about ten steps and sit down. It's in front of a white screen and a woman asks my name, looks through a paper file. I've already done the mail in application. That took about three weeks. Then their camera was inoperable for about three weeks. The lady asks for my ID. She looked at it. “Thank you.” She went to another desk and got a small red camera. She got real close up and I smiled, she took it. She moved around slowly so all this took long enough for me to look around at everything in between talking to her. She came back with my ID and said “We got a little smile”. Wished I'd said it was the muscular dystrophy that affects my face muscles so only the right half of my lips smile. The left just kinda stays neutral. I notice my eyes are really slanting down at the outside too. And even though I put what looked like a decent amount of blush on, my face looks so pale in the pic. Man I need some sun! I opted for the least explanation, and thanked her. As I stood up I asked about the disabled fare and she said, “we don't do that here”.

“OK, I'll ask where. Thank you!” I walked back to the main desk. She was on the phone so I looked at bus pamphlets waiting for her to finish, but she didn't so I asked another woman sitting at another desk about the disability fare. She looked like she didn't know what I was talking about or if she should even talk to me cause she looked back at the receptionist and the receptionist said, “you'll have to get that at One Stop on Rivers Avenue.”

“OK, thanks”. Something I've thought of is why can't you apply at the main Carta office? How about including it in the process of getting accepted for Tel-e-ride? I turn to go out the door but couldn't push the door hard enough with my walker to get it more than a few inches open then it closes back. It's a heavy door and no automatic door opener. I look out the glass in the door and there's the bus unloading passengers but they all go another direction. An employee goes on the bus and comes off and she and another woman see me standing at the door but didn't realize I needed it open. So I finally turned around and asked the receptionist, “ could you help me open the door” and she came around. She asked me to step back a little so she could get a good push and opened it for me. I said “thank you” and took a few steps and realized the bus was parked in front of the ramp. I asked an employee if she knew how long it would be parked there and she said “Hm”? I pointed to the ramp, she said, “as soon as I can get someone to come move it” and she went to call someone. She went on and off the bus and in and out the door and a driver came and went on and drove off. By this time my legs were so shaky from standing there and I saw the ramp and was afraid I would fall. With intense concentration and holding the rollerator handles like 100 lb weights with the brakes on, I made it. I realize it's not safe to walk like that but my other choice was going back in the door I needed help with or waiting for someone to come along and hold my arm.

I could have made an appointment to have them pick me up and bring me, but I would've had to wheel my P/C about a mile and a half to their pick up limit. I'm glad to finally have my ID though and hope to use it soon. I'm going to have to figure out this transportation thing.

My local disability independent living center, is supportive of my goal to work and have transportation. They're great counselors who understand all the hurdles disabled people go through to get out of our homes and access our community. They tell me they have a P/C carrier that would fit my vehicle but at the present time, I have an engine problem that I'm not sure of and no money in my SSI income to find out. I wonder if there are any mechanics who could diagnose it free? I hate asking. I finished my degree and need experience, but I also need my P/C.

FSH DYSTROPHY AND WALKING MY DOG

A woman with a disability thought about the old mom and pop grocery store in front of her house. She needs to have a ramp built just to get in there to evaluate what all needs to be done or maybe someone could lift her up the back steps? Community Center? Coffee Cafe? Art workshop? She could be there when she could. A barista of sorts? Don't put the cart before the horse, she thought.

That cold February morning Claire got on her laptop feeling like a very bad girl, she hadn't written in two days. She remembered commenting on the Democratic Debate on Facebook and posting a movie review of “Timbuktu”. That counts for writing, she allowed. 

She looked down at her dog Linus, who was antsy about going out to pee. The black lab face with grey hairs in his eyebrows and grey beard under his chin. Brown eyes, so confident and unfeigned.

This is why I don't get any writing done, was her excuse. So she put on a lavender fleece bed jacket over her pajamas and zipped up her boots, rollerated over to her power chair and sat down. She hooked him up to his leash and started outside.

The next door neighbors, a man and woman, were on their back steps having a smoke. Linus walked her over to the Sago palm and sniffed around. He looked at the street in front of the house and looked hopefully at her. 

She said, “This is just to pee, we're not walking now.”

He crossed the driveway to the azalea bed and peed on the edge of it. She looked up, the stray pug was ambling around. Fearing a dogfight in her P/C, she thought, dammit, I've got to call animal control again. She pulled her dog back toward the ramp hoping he

wouldn't see the other one yet because with Linus, loud dog whining always ensued. Think a dog's been caught in a bear trap. Her dog stopped and looked over at the neighbors and barked once.

“No, you don't bark at people in their own yard.”

The guy walked towards the pug as she turned around to start up the ramp. Midway, the woman laughed and Claire glanced quickly back over her shoulder. The pug was trotting away towards home.

She had narrowly avoided the struggle with Linus where his whole body tenses and becomes like one of those statues you see in the park, only he comes alive and starts trying to run after the other dog like his life depends on it. Sighing with relief, she hightailed it the rest of the way up the ramp and herded him in the door.

Oeuvre- a Fraction of “oov-ruh” January Part III

https://www.youtube.com/watch?v=s0p6KbO5kaU France Joli 1979

Had a day where parenting my teen daughter, I parent myself and we went grocery shopping and I ended up shopping alone which was fine. Then had a toddler crying who I could hear from the opposite side of the store all the way till I found him w/ a guy who was standing there staring at him like...a blank. No emotion. No words. I felt sorry for the little guy cause it was like no one understood or cared about why he was crying. I mean it had been going on for a good 10-15 mins. And I just drive (my scooter) by looking at them. They were on their way to check out. What do you do?

My son gave me a wooden Easter Island face monument for Christmas that I can put my reading glasses on at night, cute.

How I get up in the morning: I lean forward putting feet on floor (my bed is high) and with Herculean effort push myself to stand upright. I put my water glass from my dresser top onto my walker seat. I walk feeling my body protesting to gravity a few steps to my bathroom. I park my rollerator to the left, and balance myself a few steps with the wall, a bathtub handle and two handbars on each side of my toilet while turning myself to sit. I have to hold handbars to sit on my toilet with a plastic risen seat. After particulars, I go through pulling myself up on bars, pull up pants that I was careful not to be standing on, flush and head out to my walker. I head out of my room some mornings with my doggie directly in front down the hall, stopped for a second in front of the thermostat wondering if I should turn it up, but it was warm enough already. Listened to the silence going by my dd's room and glad she's sleeping restfully. Go the rest of few steps to the table and sit at laptop and here I am.

So I've journaled through thoughts on what it would be like to go back to church after three years out, no thank you. If you read this and have a particular question, just put it in the comment section and I'll be as honest as I can.

On the author Patricia Highsmith- “I often had the feeling Ripley was writing it and I was merely typing.”

By age of 12 she knew she was a boy in a girls body. Do I need to bring out my inner man? That's Jung, right? The balance. Animus and Anima, yin and yang. What does man and masculine even mean? Societal or cultural training? Biological survival , cavemen with strength to do things a woman had a hard time doing and women childbearing? There's the whole thing of gender fluidity. Is it emotions or physical capabilities or both?

Reading “The Price of Salt” which has been made into the movie “Carol”. Patricia Highsmith is an intriguing author, she died in 1995. I just found out she knew James Baldwin (one of my favorite authors) and someone suggested reading “Beautiful Shadow: a Life of Patricia Highsmith. While I'm waiting to get that book, I plan on watching “The Talented Mr. Ripley” which is one of the characters she wrought out of her imagination.

Also been thinking I'm going to go over my Azar Nafisi (Reading Lolita in Tehran) notes and start reading the author's she wrote about.

More Mild-Mannered, Never Dull January Sorting Part 2

This month, I'd been pondering public transportation in my little village of Oakbrook. I'm looking forward to warmer weather so I can take my PC and try out some shopping. I'll be sure to blog about it when I do. No, still no pics, haven't gotten the cable yet.

Still studying through on Dorothea Brande's “Becoming a Writer”, free, online.

http://w3.salemstate.edu/~pglasser/18468462-Dorothea-Brande-Becoming-a-Writer.pdf

I've gotten more serious about daily writing times and it's been going in fits and starts. Exercising daily (except Sunday)and drinking more water. Mindfulness is what I need and long for and it's always right here/there staring me in the face but I don't always remember.

If I get distracted or ignore self-care I can feel it by the next day. I've had to cut back on FB time and get the right amount of sleep, nine hours. With the weakening muscles affected by the MD, everything takes more effort. I'm eating balanced like a pot of turkey chili that lasted all month. Spinach salad with a minneola orange inspired this little bit of prose that's wanna be haiku or poetry.

Remembering parfait clouds yesterday evening,

I was making spinach salad. My minneola orange

was a uterus and cervix.

David Bowie's passing this month had me, like most other rockers listening to our favorites. Mine was “Let's Dance” with the lyric “under the moonlight, the serious moonlight”. I copied out all the lyrics, just in case. Never know when you'll run into a musician who can play them. That would be fun.

This month I read “The Revenant” by Michael Punke, who I was surprised to find out was Deputy United States Trade Representative AND U.S. Ambassador AND Permanent Representative to the World Trade Organization (WTO) in Geneva, Switzerland. I know the movie is out and I think the scenery will be engrossing. I hope they depict the bull boats and did you know beavers are called kews. Or were. 

Here's the Disabilities Studies Reader online again. I need to be reading more of it soon.

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

Revelation for me this month in relating to people outside my family: Don't trust people until they've earned it and shown they are trustworthy. I've always been trusting until they show they're not trustworthy. I've had it ass-backward all these years. I have to be careful in the beginning of things because I tend to gloss over signs.

Won't blame it on the chili.

I'm glad I live on the edge of woods. Pretty deep, swampy pine woods. When I was a kid, the ground was all sand, the pines were not that tall and I don't remember swamp. Now the ground is covered in feet of pine and oak mulch. I can't walk down into it because there's a deep drop off and no path. Wouldn't it be nice to have a friend who wanted to make me a path for the PC? “Oh, by the way dear, I saw you looking at the woods longingly and I know you used to enjoy time there as a child, so I'm making you a path, then you can wheel there anytime you want." Swoon.

SORTING IT ALL OUT (still) Part I

Ring, ring, cellphone … “Is this Ms. Scott?” This time from my local tourist company that offers historical Trolley rides.

Me: Are your trolley's wheelchair accessible?

Her: There are a couple of steps up into the trolley.[Insert drum roll and cymbal.]

Later, the same week:

“Hello, is this Ms. Scott?”

“Yes, oh Hi Ms. Jones!” (Not her real name.)

After the chat about how we were both fine & good;

“I'm sorry to tell you that State Agency Rehab can't help you with the power chair carrier for your vehicle because of it's age and mileage.”

I asked since it still runs fine, couldn't we install it and if I get a newer vehicle down the road I could just transfer the carrier also? She sounded adamant that it couldn't be done like that. She didn't have any further information to offer at the time but they tell me I should volunteer somewhere so I can gain more professional experience. But I made it clear I would need my chair for mobility to look for employment or a volunteer gig.

So I called our local public transportation company about taking the pic for an ID I would need for their vans for wheelchair users. Their camera was down for two weeks after the holidays and they only take pictures two days out of the week. Hopefully I can get it next week.

This is on my “to call” list: http://www.mobilityworks.com/financing/grant-assistance/southcarolina.php

Maybe I should put my physical needs, like exercise and eating right before all the looking around for work? I've had to be brutally honest with myself about how much I can do physically in a day. It's a new concept to me called self-care.

I follow a Facebook site called Writing about Writing and found this lovely book:

http://w3.salemstate.edu/~pglasser/18468462-Dorothea-Brande-Becoming-a-Writer.pdf

Like how Dorothea uses the word stimulated instead of inspired. She suggests getting up 30 minutes earlier than usual and before you do anything, go straight to writing. Don't read anything or talk or even make coffee. Do it for at least 30 mins. A few chapters later she instructs: pick a good time for every day to sit down and write. It'll be your time to write every day. Don't let anything get in the way. Write for another 30 minutes and then begin to write a few more sentences , then a few more paragraphs.

In Chapter 5 she has this little ditty: Writing calls on unused muscles and involves solitude and immobility. I need to use unused muscles, have quite a bit of solitude and immobility and TaDa! Here I am.

This following site is chock-full of people in the Disability community and their projects and when I last checked are upgrading their site.

http://www.twothirdsoftheplanet.com/365-days-with-disability

I'm an aspiring writer/artist. I've been so stimulated by 93 year old Iris Apfel in the way she used her intuition to feel out what kind of interior decoration or fashion she needed for her clients or herself.  Check out Netflix, “Iris”. 

Some other books and movies that taught while entertaining me lately are: Helene Hanff, “Q's Legacy”. You know, well maybe you don't, the author of “84 Charing Cross Road”? Of course you do! Well, you should.

“The Never-Ending Story” a film with the following timely dialogue between the boy hero and a vicious stalking wolf:

“Brave warrior, then fight the nothing.

But I can't! I can't get beyond the boundaries of Fantasia!

Fantasia has no boundaries.

That's not true, you're lying!

Foolish boy, don't you know anything about Fantasia?

It's the world of human fantasy. Every part, every creature of it is a piece of the dreams and hopes of mankind. Therefore, it has no boundaries.

But why is Fantasia dying then?

Because people have begun to lose their hopes and forget their dreams. So the nothing grows stronger.

What is the nothing?

It's an emptiness that's left, it's a kind of despair destroying this world”

************************************************************

I wasn't expecting it, but had some despairing non-fiction drama myself this past month. Our relationship flew apart. Demolition. Kaboom. It's a process that may heal with time, but for now there's no contact. I'm sharing this because I'm blogging about my life. I'm flying by the seat of my pants both in wondering if and how the relationship can be healed and how to write about it. I write about it in some of my private morning musings. It helps to sort out confusion and trace sources of bitterness.

This was another early morning exercise. How someone might see me coming out my door;

Someone looking at me would see I'm dependent on the rollerator and I look like I'm focused on my movements, I'm a slightly heavy older woman. With short light brown hair going silver. I'm light skinned, today I'm wearing dark tan pants, a blue Scandinavian patterned sweater, and a black felt jacket. People see me lumber down the long wooden ramp with my left hand on the handrail and perch at the end . They don't see internal teetering for balance. They might gather that I'm weak or invalid. I'm weak for what I used to be, but not invalid. Then I'd be lying in bed. I hate the word invalid. In-valid.

Someone might gather about my character and background that I'm determined to go somewhere, that it must take a lot of energy to walk. I may make them glad they can walk freely. I can be seen doing this daily most of the time, sometimes 2 times a day. They may think I'm a quiet person or stuck up because I concentrate so hard to balance I can't raise my hand to wave or look up to say hello. I have to watch where my feet are going. They may feel sorry for me or nothing at all. I'm pretty ordinary looking. I'm coming out of a dowdy period. If they were close enough, they'd see I have an orange multi-strand necklace on with hammered silver rings, earrings and orange fingernails. Also a bright blue and red fleece scarf wrapped around my neck for the cold. They might see the old store beside my car and think I had something to do with that at one time. (I did) They may think something about the old trailer that's had some new remodeling. They may think I must be pretty poor to be living here. I'm not financially independent, but emotionally I am better than I used to be.

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.