2020 Goals

I don’t do resolutions for the New Year, but I do have a ritual where I write the goals of what I know that I can accomplish.

Politics

I am extremely excited for this election season because we get to choose who our elected officials are – from my local representatives to state and US representatives and senators and President. I’m also nervous for that same reason and lots of other reasons. Participating in the political process matters because the people we elect make decisions on laws and policies that impact people with disabilities. Elections matter! I will be doing a lot more posting about this leading up to November which brings me to the next goal which is…

Back of Justin in his wheelchair covered with pins for MN DFL candidates looking at yard signs for DFL candidates

Woman hugging Justin, both wearing Walz Flanagan stickers

Man with arm around Justin, We belong in the community sign hanging on front of Justin's wheelchair

Blogging & Writing

It brings me great joy to get the word out about living with a disability and I want this to be a community-building effort. So, please like, retweet, share on Facebook, and comment on my posts. This is what helps us all connect. It also helps me know that my voice matters.

So, I see my blog and writing as my vocation. Yet, it’s an unpaid vocation. I would like to explore how I might earn a little income from what I love to do. Something I’m going to do in the next year is look into how I might monetize my blog. There are pros and cons to this and I am going to look at all sides before I make my decision.

This has been my joy of my life to write. Without writing, I don’t know what I would do. So expect lots of blogging from me this year. I also have a goal to finish the novel I’m writing by Valentine’s Day. Then will start editing in the spring.

Justin in wheelchair in front of poster that reads "I think that stories, and each other, are the most valuable things that we have." Hank Green

Living life

Finally, and this is an ongoing thing, continuing to explore and figure out along with my parents, how I will live independently.

Check out one of Chris Serres and Glenn Howatt’s recent article for why this is so difficult to figure out: Disabled Minnesota residents often live in costly isolation. You can check out my blogposts from last year about what I would like to see in my future:

In the next several months, you can find me at my computer, a concert, a rally, primary, or caucus! Happy New Year everyone!

Top Moments of the Decade

This is not an easy list. So many things happened that could have been the most memorable of the decade. Well, there are the DBS surgeries, I think they’ve had a huge impact on not just me, but my whole family. But, I want to focus on non-medical, non-traumatic moments.

April 14^th, 2016

My first post was published on justinsmithwrites.blogspot.com. It was part of a school assignment, but don’t hold me to that, and I just kept writing after the class was done. I love sharing life as I live it in my new and improved WordPress blog.

Graduation

I gave the graduation speech that same year and well, I’ll leave links to the video and the blog post down below.

Writing the first book

I have not read it since trashing it. It has never been my priority to get it out in the hands of the readers, not like this novel about a teen girl who has CP. I proved to myself that if I put my mind and heart into something, I can get it done.

April 2019

I began writing this beautiful book and I like this narrator and I like the characters who I have gotten to know.

Little moments

My favorite moment was the little moments. The hour before the first DBS surgeries when I was put on my mom’s lap, to the moments I had in school, trip to Boston with my WBUUC Youth Group, nerf sword fights with my brother, baseball games with my dad (Twins, Chicago, St. Louis, Cleveland, Milwaukee, Toronto), reading the book Paper Towns and being stopped dead by the last paragraph, and to the moment when I decided that my current book might be done by Valentine’s Day.

Here is to the next ten years. Happy New Year’s and New Decade!

Looking Towards the Future High School Graduation Speech

Justin sitting on Mom's lap in chair next to hospital bed

Justin in graduation gown near podium 4 adults standing and applauding

Justin, mom, dad with the Interrupters band

12 year old Justin with his brother with lake behind

Justin and dad in front of theater marquis for sold out Interrupters April 3

The novel

I’m feeling fantastic about how the novel I’m writing is panning out and the characters…OMG! Awesome!

I’ve set a deadline for the first draft and it’s literally on Valentine’s Day. Might finish it sooner than that, but my goal is Valentine’s. The reason why I picked that date is because my book is a romance, mostly. It is about human relationships and what we do when a relationship doesn’t work out.

I’ve got to finish what I hope is a brilliant book and step away from it for a month or two (break for political season – caucus, primary, legislative session, ADVOCACY!). Then, I have to self-edit the thing. Then send it to critique partners. Edit some more. Send it to beta readers. Edit some more. And maybe send it to sensitivity readers. And maybe, edit some more.

My book is a mystery romance novel narrated by a young woman with cerebral palsy and she is searching for a former friend. The reason why I wanted to write this book is because I never really attempted to write a novel about how I was feeling when I was fifteen or sixteen. This is when I went through multiple deep brain stimulation surgeries, had a surgical site infection, etc. It was a somewhat confusing time in my life, and I can bring some of those feelings and experiences into this story I created. I have never attempted to write about how I perceive my disability and I needed to write a realistic story about this.

Back to work on my book.

p.s. NaNoWriMo Report: wrote every day and ended up with 5 more pages than my goal.

NaNoWriMo and More

What is that? Are you making up words?

Happy NaNoWriMo and what am I talking about?

November is National Novel Writing Month in which people attempt to write fifty thousand words in a month. Thanks to my friend, Annie, who let me know about this. We’ve been friends/writing buddies ever since going to Nerdcon in high school. I am currently writing a novel and the resources and goals in NaNoWriMo have given me some stretch goals. Because it takes me longer to write, I am going to be writing 20,000 words this month – am shooting for about 5 hours of writing a day! Also learning more about writing tips and craft from NaNoWriMo.

So, writers – go get inspired and check out NaNoWriMo!

My accessibility @ musical venues update

Went to a benefit at Hook and Ladder last night. All very accessible and looking forward to seeing Trevor, my main daytime staff guy, play there in January. You can valet park right at the door, drop a wheelchair lift and unload. That’ll be great in the winter!

This week I got tickets to go to a concert at the Fine Line Music Cafe in Minneapolis in a couple weeks. For ADA seating, you need to buy general admission tickets and then contact the Fine Line to let them know you’ll be coming to the show, so they reserve some space for your wheelchair. They don’t have any of this in the FAQs, so had to send an email to ask about ADA seating. It would be great if all of our music venues had some info on their websites about accessibility at their venues. Makes it easier for us to know what we’re rolling into.

If you missed it, you can watch Mary Lucia’s interview of me about accessibility at live music venues. Check my last Talking Accessibility @ The Current post for links to the interview.

Back to writing

Got to get back to my novel (a YA romantic mystery about a young woman who has Cerebral Palsy, uses communication device, power wheelchair and she is awesome!) Time for more main characters who have CP in literature, movies, everywhere.

“Writing, or at least good writing, is an outgrowth of that urge to use language to communicate complex ideas and experiences between people. That’s true whether you’re reading Shakespeare or bad vampire fiction — Reading is always an act of empathy. It’s always an imagining of what it’s like to be someone else.” John Green, How and Why We Read, Crash Course English Literature #1

Justin and Annie in front of poster with John Green quote — Annie and Justin at NerdCon in 2015 with poster of John Green quote behind them.

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.

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.

Writing

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.

“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.

Speaking of the road, we did have an overnight road trip to see my grandma and grandpa for the 4^th 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.

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.