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

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

Maggie Rogers at the Armory: Accessibility Check

Ok, that question that everyone is asking about: how accessible was the Armory and how was the music?

First part of the question is definitely what I want to talk about, but starting with the music – amazing. NowNow was the opening band. I’ve been listening to their music and interviews so was familiar with their music and story. They were awesome and hope to see them more in the Twin Cities since they’re a Minnesota band.

Maggie Rogers was everything I expected. She has an amazing voice, lyrics that were bringing people around me to tears, and the dancing!  There was so much energy in the room.

For the accessibility portion, well, the Armory was absolutely nothing like the Varsity or Palace. I think they can do better and here’s how:

  • Have dedicated ADA seating closer to the stage. Paying the same price for a ticket and having the dedicated seating in the back of the balcony sucks. This seating is a half a block away from the stage. Why not have some reserved ADA seating closer to the stage in the balcony and also closer to the stage on the main floor? I did decide I wanted to be on the main floor and of course, the tallest guy stood right in front of me. My chair does raise up, but I’m not able to move around for a better view on a packed floor. I liked being on the main floor but it would be nice to have a little bit of a protected area for people with mobility needs. The images below show what I would have seen from a distance in the ADA seating in the balcony, my driving to the main floor and my view of the concert stage from closer up on the main floor.
    • Tip for concert goers who use wheelchairs: Get there as soon as the doors open to try to get standing room places closer to the stage in the balcony or on the floor.
  • Train your staff better. I’ve been so impressed with staff at the Palace and Varsity because all of them go out of their way to make sure you find the ADA seating and that you have what you need to have a great experience. The Armory was good at noticing us in line and leading us over to the elevators where they checked our bags and tickets. That was good. The difficult part was that each person leading us led us to another person who would then lead us to another person. We got on the elevator and the elevator guy saw we didn’t have wristbands. So, had to go back down so we could get wristbands. Waited for the elevator again, and rode up to the balcony and the elevator guy said ADA seating was right there at the back and told the other people there’s a chair on the side, which there wasn’t. He did eventually bring a chair back up, but it was confusing and no one was there to help the other group or us. We tried to walk closer to the stage to see if there was any room that would work to see better, but it was already pretty packed on the stage end of the balcony.
    • I repeat – Tip for concert goers who use wheelchairs: Get there as soon as the doors open to try to get standing room places closer to the stage in the balcony or on the floor.
  • Elevator wait times were excessive. At the end of the concert, we waited in a line for the elevator and the elevator didn’t seem to be coming. After probably about 10 minutes, we gave up and went to see if there was another elevator. There was another elevator on the other side which came more quickly. Made us think about what would have happened during an emergency or fire. No one is going to pick up my 300-pound wheelchair and carry it down the stairs… You have to use the elevator to get on the main floor or balcony levels from the street level.
    • Justin and man waiting for elevatorTip for wheelchair users: There is a 2nd set of elevators at the back left facing away from the stage. They seemed to faster than the ones on the right, which is where they’ll take you for the ADA seating in the balcony and also go to the parking.
    • Tip for people who don’t need to take elevators and take them anyway: Take the stairs if you are able to take stairs. When you don’t, that means we get to wait even longer. I shouldn’t need to say it, but think!

I will go to future concerts at the Armory because I love going to concerts, but I know that accessibility isn’t the greatest for me here. I will plan on getting there earlier and carve out some space on the main floor knowing that I’ll be stuck there until the end of the concert because there won’t be a way to get out. That’s probably not terribly safe, may damage my wheelchair, but, I’m paying for an experience and don’t want to be relegated to the back of the room.

Justin dancing with othersJustin and his dad in the crowd

My Yellow Wallpaper

The Yellow Wallpaper, by Charlotte Perkins Gilman, is a short story about a 19th century woman who probably has depression due to having a baby. She is forbidden from socializing, writing, pretty much doing anything by her “psychiatrist” husband who prescribed a “rest” cure. Mental health treatment in the 19th century sucked! So she is forced to stare at the yellow wallpaper and finds herself becoming even more despondent. The yellow wallpaper becomes her symbol of the woman and the many women at that time being trapped in society’s expectations.

This story and John Green’s Crash Course episode about The Yellow Wallpaper, got me thinking about what my yellow wallpaper was. For me, it was Transition Plus. After high school graduation, many students with disabilities go to transition programs until they’re 21 and I’m sure many students and parents find them to be a valuable option to continue working on educational goals.

I was 18 years old and found myself going every day to a single room located in a building in a business park a couple miles outside of town. That was where our Transition Plus program was located. At the time, it seemed like a good way to get ready for college. But, I found the classes were remedial, didn’t seem very interesting to me, and I was bored.  I sometimes felt like I was looking on the outside of myself in there. I despised that feeling where I was so despondent and felt trapped even though my para and teachers were trying to make it work for me. Part of the reason was because I was in this segregated building and I wanted to be included with the outside world. This isn’t what I thought I’d be doing. My friends were going off to college and I was in a place I didn’t want to be.

I’m not taking anything away from people who find these programs helpful in transitioning to life after high school. And, the staff were great and trying to do everything they could to help me like Transition Plus. But the first time I wheeled into that building, I felt anxious and depressed. I wanted to get the heck out of there and never look back. I couldn’t get past feeling trapped in a place and life that I didn’t want to be in. I did get everything in place to start taking classes at Century College that spring, but still had to go to that single room in that building outside of town until I said “no more.” I quit Transition Plus that spring and never looked back.

My yellow wallpaper is exclusion. What is your yellow wallpaper?

My ideas for improving my Transition experience

Why not have transition programs that are located in our public college and universities? I just needed a para to help me during my college classes while at the college. That would have been my least-restrictive environment to continue working on my individual education program (IEP) goals.

Next up

MAGGIE ROGERS at the Armory! Can’t wait to hear this favorite in person!

Light on video

Would you hear me out

If I told you I was terrified for days

Thought I was gonna break…

Oh I am finding out

There’s just no other way

And I’m still dancing

At the end of the day

If you leave the light on

Then I’ll leave the light on

“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