Ready for AFC Wimbledon, Art & Writing

Six days till the new season

We get to play seven new teams this year. As many of long-time readers know, I LOVE AFC Wimbledon football (aka soccer). Love the idea of fan-owned teams and the story of the club. Excited for the new season and going to The Local in Minneapolis to watch some matches.Justin watching tv in pub

Art

Hung out at the Minneapolis Institute of Arts on Friday – very accessible and air-conditioned. I have long believed in the stories that paintings and pottery tell, shaping the world around us. Sparked some ideas for my next book and was a cool place to hang out on a hot day.

 

Justin and dad standing in ancient doorway arch

Justin driving his wheelchair in front of paintingWriting

Feel as if I’m always working on my first draft of my second book, a realistic mystery about a girl with cerebral palsy. I’m using my own experiences more in this book. This was a more draining week because I was writing about hospital experiences – they’re not the greatest life experiences…

For a break from that, I keep editing my first book, a thrilling romance with a little bit of sci-fi.

Justin driving wheelchair in art institute hallway with statues

“Another turning point, a fork stuck in the road”

Green Day has this quote from the song, Good Riddance (Time of your Life), that I keep listening to over and over and over. I am at a turning point in my writing career, with my first book I wrote and I just can’t decide whether or not to throw it away. It’s hundreds of hours of working on this novel and let’s be straight, it is terrible. I didn’t expect that I would write a “good” first draft. Not sure if anyone is capable of writing a good first draft?

I’m having more fun writing my new book giving voice to a young woman with athetoid cerebral palsy (CP) who uses a communication device. As a young man with CP, I haven’t found many main characters who look or sound or experience life like I do. We need more main characters who speak with communication devices or use wheelchairs or whatever. I need to be able to see me or someone I can relate to in the books I want to read.

I’m also at a turning point in college. As some of you may recall from previous posts, I tried to take an online class. It didn’t go exactly well and I dropped the class. And I am at a loss as how I want to keep learning or what I want to learn about. In college, I can get CART captioning that I need during a lecture or class. If I’m taking a class at a private or community Art or Literary Center, I’m not sure that they’d have to provide CART captions. I have some research to do to figure this out.

Lastly, you know about the toes, probably. My big toes are STRAIGHT. It still is a pain in the butt, but it’s less than before. No casts, check. No pins, double check. I have PT on Monday so can start working on transfers and building my strength again so I can get back to one person helping me with transfers instead of two. Here’s a picture of my dad adjusting my foot rests to work with my cast-free feet.Dad working on wheelchair footrests with Justin's feet strapped in

Speaking of the road, we did have an overnight road trip to see my grandma and grandpa for the 4th of July. My mom wanted to spend her birthday with her parents in Pipestone. Happy birthday mom! My first road trip in a long time and it was fun hanging out with my family! My parents and I are making plans now for a big road trip next spring to D.C. and Philadelphia. I want to go to the Disability Policy Seminar in D.C. in March 2020.

This is the video of the Green Day song I mentioned from YouTube.

Also, here’s a White Bear Pioneer Press photo of the Manitou Bears that Shine and a link to the Manitou Days Facebook post about my being recognized as a Bear that Shines. That was really nice and I’m honored to be recognized!

And here are a couple pictures from our Pipestone road trip.

Grandma, Dad, Mom, Justin and Grandpa sitting around table with birthday cheesecakeJustin with his grandpa

 

Quick update from ME

Hey there, I’m BACK! Stopped taking the heavy-duty pain meds so have been able to get up to my computer again.

What did I miss most?

Writing. I love to crank the music and write. I’m working on a new novel now about a young woman who has cerebral palsy and her friend who is a boy, not a boyfriend. It’s still early, so working on the characters.

What do I remember?

First week – NOTHING. It was a blur. My parents told me I threw up a bunch in the hospital. No memory of it. I remember the drive home and that it was painful! I don’t remember that it was so painful that mom ended up calling the triage nurse several times.

It’s a thing with me and my CP – I get into what I think of it as my pain loop – I have pain. Then my muscles go into high tone and tighten up. This causes more pain. Which causes more high tone tight muscles. Which causes more pain. Which causes even more high tone tight muscles. And repeat. Repeat. Repeat.

At the end of the week, I went to the doctor. My incisions were looking good but then they ended up having to put the cast back around my entire foot. Ever have a cast? Remember the itching?

Second week – Pain has been decreasing this week and I’ve been able to sit up at my computer longer. Yay! I just take naproxen and acetaminophen now. And medical marijuana at night.

Highlight of this past week – I took my mom to see Avengers: Endgame for Mother’s Day. It was amazing! So, is my mom. Pictures are from our family’s trips to Wyoming and California in 2013.

Justin with his mom and brother with mountains behind

Barriers to Inclusion Part 3: Employment

In the 2018 fiscal year, 16 percent of Minnesotans with disabilities who received state services worked in the community alongside people without disabilities.  Chris Serres, Star Tribune, 3/16/19

How is this real? That number needs to be a hell of a lot higher than 16%. I am NOT one of the 16% by the way… although I did get paid to be a keynote speaker a year ago. That was my first and only paid work.

We have to rethink what employment looks like and be open to a variety of work options for people with a wide variety of abilities. For example, I want a part-time job with the option to work from home. I love to write and advocate for disability rights and am good at public speaking. I love testing out assistive technology, applications, and pretty good at using WordPress. I have a lot to offer, it just takes me longer to do what I want to do.

I think it’s time to rethink traditional college and how some of us with disabilities can get our first jobs – especially those of us with severe physical disabilities. I’ve written about this before, but the amount of time and energy for me to take just 1 college course is a lot. One college course means that I have very little time for doing anything else like writing in my blog, getting out in the community, advocating for disability rights, or more importantly going to concerts. I’m not sure it’s the best use of my time and would take me about 8 years to get an Associate’s degree. So, what kid of job am I going to get without a degree? Or do I need to create my own kind of work because when I’m not a college student, I don’t get to do internships or have those other entry points into the writing or communications work I’d like to do.

Smiling Jennie Delisi, Jay Wyant, Kris Schulze and Justin Smith

Let’s all get more creative and figure out how we can connect people with jobs, especially those of us who aren’t following traditional paths.

Read the article Minnesotans with disabilities fight barriers to inclusion, unfilled promises by Chris Serres. Really, read it right now! And share with all of your friends, family and random strangers!

And read the first two parts of my Barriers to Inclusion blog post week. Really, read them right now! And share with all of your friends, family and random strangers!

Barriers to Inclusion Part 1: Inclusion

Barriers to Inclusion Part 2: Caregivers

Here are a couple of  posts from a younger me related to college and work:

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Inclusion in Action

Random Thoughts

Justin in wheelchair with movie lights, 2 men looking at him with video camera

 

The scary part of editing

Why did I write this book? It seemed like a good idea at the time I started writing, but now that I am editing, let us just say that there are moments when I feel like the book should be thrown into the garbage can and then the garbage can should be thrown into the center of an ocean. Or maybe just hit delete.

I like the character of my narrator and love the idea imagining what my life might be like if I didn’t have a disability and happened to be a vigilante. In my book, I can go anywhere, be anyone, do so many things that I can’t do in my real life. I can’t just hop on a plane and go to England or Paris or Egypt or Italy. In fact, I’m not able to fly anywhere right now because I don’t have a good way to bring along the equipment I need or sit in an airplane seat since there are no shoulder harnesses to help hold my body up.  And, there are places that would be cool to go to that just aren’t very accessible if you use a power wheelchair. Any travelling means lots of research to figure out if places will be accessible enough.

Also, in my story, my characters just talk effortlessly and don’t need to use a communication device. I am thankful for my communication device so I can communicate my own thoughts and ideas. It’s also fun to imagine if people could just understand my voice without it taking so long to type out everything I want to say.

Through my characters, I get to imagine a different reality.

So, back to editing. It is making me think about life.

p.s. It was actually easier to travel when I was younger because I had a seating system that could strap into a plane seat, wheelchair was less complicated to fix if it got broken,  and easier to carry me or my chair to inaccessible places. Here are some of our more memorable family vacations to Washington D.C., Florida, Yellowstone, Grand Tetons, and Toronto. I get a do-over to D.C. because that was the year I got the flu after the first day and spent the rest of the trip sick in the hotel room!

Justin, dad and brother at Santa Monica End of the Trail sign11-year old Justin with younger brother and dad, White House in backgroundJustin and dad with group of people on float raftJustin as a boy at top of board walk ramp with sandy beach and oceanJustin in front of Moose statue012375ef8a70833ae3e8b4e732d6fba202baa9f152

Discoveries

The toes report

Met with the orthopedic specialist on Friday. Surgery in the next month or two as soon as it can be scheduled. Basically, the muscle tone and uncontrolled muscle spasms in my feet have caused my big toes to be just shy of dislocated. I have really strong muscles! And as I’ve mentioned before, it’s as if all of my muscles have their own individual brains, none of which listen to the brain in my head.

Foot xray showing bent big toe

I’m going to have surgery on both of my big toes as the doctor thought it was just a matter of time until my right toe gets as bad as my left. I’ll be in the hospital for a night or two after the surgery. The whole thing involves cutting tendons to my big toes, shaving off some bone on the knuckle parts of my toes, pins for 6-8 weeks. And then I’ll have another quick sedated surgery to remove the pins.

What else to say? It’s going to probably be a long, painful couple of months. Hopefully, it’ll be less painful once I get through it all.

Which brings me to…

Auto-captions

I’ve discovered over the past several years that my auditory neuropathy (AN) and hearing loss makes it difficult to follow conversations. CART (real-time) captions and closed-captioning helps me better understand what’s being said. For every day conversations or doctor visits, that’s not really an option.

Google Live Transcribe icon

My mom’s coworker let her know about Google Live Transcribe app for Android and we’ve been trying that out for everyday conversations. We also used it at my visit to the orthopedic specialist on Friday. It is amazing.

What do I like about it?

  • The text size can be enlarged so I can see it. I have visual tracking issues so larger text helps me read more easily.
  • The auto-captioning with Live Transcribe is pretty accurate. My mom reads along and points out when something is inaccurate. Like when the doctor said 6 to 8 weeks but Live Transcribe wrote out 66 instead. 66 weeks of pins in my toes is very different than 6 to 8 weeks.
  • Being able to read what was being said helped me fill in the gaps for when the discussion was sounding like a statick-y radio, which is what happens often with my AN.

Which brings me to…

My Book

Editing is long, hard work!

 

I am done with my first draft of my book!

Exciting week for me. The first draft of the book I’ve been working on for the last two years is finished and it’s exciting. I proved to myself that I can write a book. Not sure it’s a very good book or that anyone would want to read it. But, I can write a book.

What did I learn about writing a book?

  1. It’s hard. Being persistent and sticking with it when I couldn’t find ideas for what was next was hard.
  2. It was good for me to write on my own. I didn’t want my parents or others to read what I was writing because I wanted to prove to me that I can do this. I didn’t want other people’s ideas or feedback to influence my story for my first draft.
  3. It’s time to take a break from this story. I need some time away before going back and starting to edit.

In the meantime, I have lots of just typical life stuff to deal with:

  • Meeting new case manager/social worker today since I’ve moved over to adult social services.
  • Health stuff (stupid toe!) – Botox is scheduled for Wednesday.
  • Need to do all the paperwork to move to the new Fiscal Management Support model for Consumer Directed Community Supports waiver. I mentioned this in a previous post about how now MnDHS is requiring clients to become their own small businesses to hire and manage their support staff. Lots of paper work involved!
  • Keep writing in my blog.
  • Stay warm because it’s like 50 below Fahrenheit here in Minnesota.