Category: Uncategorized

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…

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.

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 14th, 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

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.

 

I want to dance in the graveyards

Fine Line accessibility report

I went to the Delta Rae concert at the Fine Line last week. Accessibility, like at most venues, was a mixed bag. There is no information on their web page about accessibility.  I emailed them to ask about wheelchair accessibility or accessible tickets. They replied pretty quickly and informed me to buy general admission tickets, that I just needed to email them my name and needs, and they would have a space reserved for me.

When we got to the show they escorted us to a spot right by the stairs up next to the stage. LOVE being right up front! This spot allowed direct access to the bathrooms and for most shows would have been great for seeing the band. For this show it offered great view of the piano, see photo. My father (aide for this outing) said that once the room filled it would have been difficult (not impossible) for me to move around.

As for the concert, the opening act, Liz Longley, was incredible. If you like folk music, you are in luck. Check out Outta my head.

The main attraction was a band called Delta Rae, an interesting group (interesting in a good way!). They are kind of southern folk rock. It was awesome to get high-fives from band members as they were going on and off the stage! Watch the Dance in the graveyards video – it’s awesome!

Want to know my thoughts on other local live-music venues?

Talking Accessibility @ The Current – Interview with Mary Lucia from MPR The Current

Maggie Rogers at the Armory: Accessibility Check – Armory

The Interrupters up close – Varsity

GOTV and CHVRCHES – Palace

Show Up and Dance with Me! – Palace

Pride, Prejudice & Accessibility – Surly Field

Another Justin

I am extremely excited that my friend, Justin Stofferahn, is running to be my State Senator (SD 38). I met Justin at a Walz event in 2017 and got to know him through the caucus, district convention, State DFL Convention, and in volunteering for Governor Walz and my State Representative Ami Wazlawik.

I know Justin will be a great Senator. He listens – truly listens. He made sure that I was at the table and that I was able to share the issues that mattered to me. He reaches out to make sure that people with disabilities and others are included in the process. I am confident that when he becomes my Senator, that I’ll be able to connect with him on legislation that impacts me and others with disabilities. And that he’ll not only listen, but will act.

‘Tis the season for writing more about political issues impacting people with disabilities as we near next year’s election. Start finding out now who is running for local offices – don’t just follow presidential politics. State and local politics is incredibly important and has very real impacts on people like me who need services and support to thrive in my community. Pay attention, show up and be informed!

Looking forward to adding Justin’s sign in our yard and his pin the back of my chair! #OneMinnesota

Find out more about why I think getting involved in the political process is important. Check out this blogpost with link to the Rochester ABC Channel 6 news report from the DFL State Convention: Adjournment

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.

Talking Accessibility @ The Current

Wait, what?

Ok, this was a big awesome week! Unbelievably big and awesome!

Who knew when I wrote my last post about seeing Maggie Rogers and accessibility at the Armory, that Mary Lucia from Minnesota Public Radio’s The Current would reach out and ask to interview me? Of course, I said yes – anything to raise awareness of inclusion and accessibility in everyday life, which includes going to see live music.

If you haven’t already, Listen to Looch and share with your friends, family, and music lovers! Next time you go to listen to live-music, check out ADA options and see if you’d want to sit there.  As I mentioned in the interview, according to the Centers for Disease Control (CDC) a quarter of our population has a disability – accessibility and inclusion for all matters!

Feel free to share your experiences of accessibility in live-music venues and keep the conversation going. Big thanks to Mary Lucia and Luke Taylor for reaching out and bringing light to this issue.

Listen to Looch: talking with Justin Smith, music fan and accessibility advocate post on The Current website

Listen to Looch Interview with Justin Facebook post

Listen to Looch Interview with Justin on YouTube

Lastly, change up from my regular red Converse. These are awesomeness. Just an all around awesome week!

Black and white checked Van tennies