First Time @ First Ave

I am now an official Minnesotan – not only born here but finally have gone to First Avenue! Thanks so much to the Current for the invite and tickets for their 15th Anniversary bash. I got to see a bunch of bands including 26 BATS!, MaLLy, Seratones, The Bad Man, and Grammy-nominated Black Pumas. It was beyond amazing!

best moments ever

I especially loved the Bad Man set. They were youthful and energetic. I was dancing non-stop! The lead singer, Peter Memorich, threw out t-shirts towards the end of their set. He pointed back towards me and threw the shirt way back past the sound booth. Well, my dad could have broken my chair when he tried to catch the shirt and caught himself on my communication device, but didn’t. The shirt deflected off of him and landed in the chair behind my mom. A woman picked it up and gave it to me. The band’s producer who happened to be standing near us, also gave me a t-shirt. For Peter, to take the time to come and say hi after they were done playing – that was simply awesome! One of my most awesome moments of the night – thanks for reaching out Peter and David!

The Bad Man on First Avenue StageI’m not going to say much more about the rest of the bands – they were all awesome. I’m still swaying, dancing, and singing the next day! Go to the Current’s website and watch each of the bands. Recap and photos: The Current’s 15th Anniversary Party

Thanks to the Current for introducing me to so much new music and to local music. And thanks again to Mary Lucia and Luke Taylor, for finding and interviewing me last year about local music venues and accessibility. Talking Accessibility @ The Current

And, now on to the…

accessibility report @ First Ave

The most difficult part of wheelchair accessibility after having a snowstorm the previous night and bitter cold that day, was parking. The lot next to First Avenue hadn’t been plowed very well and the accessible parking hadn’t been plowed at all. Paths hadn’t been cleared between the lot and the sidewalks. My wheelchair got stuck as we tried to plow through the snow to get from the lot to the sidewalk. Thanks to the folks who stopped and helped get me unstuck. It takes about 5 or 6 people to get heavy power chairs unstuck, btw.

Once we got in to First Ave, it was, can I say again louder this time – AMAZING! Accessible reserved seating was right behind the sound booth. I could see the stage really well and it was fun watching the sound guys! After 26 BATS! we went over to the merch tables to buy some stuff and then we went up front on the side of the stage to watch MaLLy. It was fun to move around and check out First Ave from some different areas. I could have stayed up front for the entire show, but decided it might be hard to leave if I needed to, since it was a sold out show and it was going to get even more crowded. It’s difficult for anyone to move through really crowded spaces, and nearly impossible to move around in a wheelchair.

Can’t wait to go back and see bands at First Ave – it was a great experience (except for the winter weather/parking part).

Seriously, take the time to listen to each of these bands on the Current’s website. Next time any of them are playing near you – GO check them out!

 

Seat at the table in #OneMinnesota

On Monday, I went to the Legislative Forum sponsored by the Minnesota Council on Disability. Governor Walz and Lt. Governor Flanagan were both there – the first time that a Governor or Lt. Governor has come to this Legislative Forum. It was also great to hear from the legislators who were there to talk about what’s coming up this session and to listen to disability advocates about issues important to us.

My communication device had some technical difficulties so I wasn’t able to ask the questions that were important to me. Here are some of those questions:

How might we:

  1. Create more affordable, wheelchair accessible housing?
  2. Explore creative options for co-housing communities to include people with or without disabilities?
  3. Expand the use of Consumer Directed Community Supports (CDCS) so people with disabilities have more options and choice for living independent lives? CDCS allows me to choose my own staff and pay them livable wages. But, my case manager says that if I switch to traditional Provider PCA services, that I’d get a 25% increase in my annual budget. This isn’t fair – why do people using CDCS get smaller budgets?

First Avenue Tonight for #Current15

Tonight – I’m off to First Avenue for the Current’s 15th Anniversary show. Thanks to the Current for giving me tickets! Super excited – my first time going to First Avenue! I’ll let you know more about accessibility at First Ave and how the show was tomorrow! In the meantime, check out Mary Lucia’s interview with me about accessibility at local music venues. Talking Accessibility @ The Current

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