Stem the tide

I’m social distancing at the moment with my family. Let’s talk about how scared I am and then what we can do to slow the tide.

How scared are you?

A bit. I think that it terrifies me that I could be one of the worst hit by COVID-19, but what you gonna do? I distinctly remember my Washington DC trip, my mom can explain what happened on the trip. And ask her thoughts on coronavirus.

MOMJustin sitting in wheelchair with communication device, mom sitting next to him

Hi, I’m mom. In 2009, we took the boys to Washington D.C. for fall break. The first day started off promising. We had a tour of the White House, scratched the President’s elevator with the footplate of Justin’s wheelchair, and explored the American History Museum. By late that afternoon, Justin had a high temp and all of the symptoms of H1N1. The next day, we started contacting our health insurance and clinic to find out what we should do if it worsened. As it was, even though it was scary, fortunately, Justin started feeling better after a couple days holed up in the hotel.

The scary thing, is that when Justin gets sick, he tends to get sicker than others. Breathing gets more difficult and coughing is a struggle. Care giving gets exhaustively harder. When Justin gets sick, which thankfully, isn’t often, he can get really low tone (kind of like dead-weight with sporadic high tone and jerking if in pain). This means two of us are needed to lift him up in bed to give drinks of water or to transfer from bed to wheelchair to toilet chair. If uncomfortable or waking often at night, then dad and I both are up multiple times through the night. People may not realize that Justin needs someone to help with all daily cares. So, we’re trying to create a “virus-free-bubble-zone!” So, I’m beyond scared of Justin, or really anyone in our family, getting COVID-19.

11-year old Justin with younger brother and dad, White House in background

BACK TO JUSTIN

Because we’re in these uncharted waters, I want to talk about how we can slow the tide so that we don’t overwhelm the hospitals for those who truly need it.

What can we do to slow the tide?

  • Practice social distancing- look, I know it is easy to not do this. We are a social species and will always be, but we don’t want to pass coronavirus around like a viral tweet. For now, I’m just hanging with my family and we still have 2 personal care attendants who are able to help me out.
  • Don’t hoard masks or anything- you are potentially taking away from someone who needs it.
  • Wash your hands regularly- just basic advice from every single health organization, 20 seconds.
  • Loved this bit on John Oliver’s show from 3/2/2020 about Vietnam’s Coronavirus wash your hands Tik Tok dance challenge video.
  • Check the CDC’s COVID-19 website for more updates or my favorite info is from Minnesota Department of Health Coronavirus website. Find your state or country’s trusted source of information on this one.

What am I doing to keep busy?

  • Same as usual – editing my book, writing blog posts, reading a lot of books using Bookshare.org, listening to lots of great music, watching YouTube, and hanging out with my family.
  • Last night, my grandma came over for dinner and we Google chatted with my aunt and cousins in Kentucky. Don’t get to see them in person very often so nice to have tech that helps keep us all connected.
  • It’s going to be warmer this week, so will get out of the house and go for some walks in the neighborhood (while keeping distance from others) or just get outside in our yard for a bit of sun.

Take care of yourselves!

 

 

Frequently asked and unasked questions about writing, social media, etc.

Are you ever going to get something published?

Maybe I will, might take a while to get this book published.  I have started editing and that can take a while. This is technically my second book. I trashed my first book.

Writing anything else?

No, I’ve started outlining the next one and I am focusing all attention on editing the book I’ve written. I’ll let you know when I will start drafting this one.

What music do you listen to when you write?

I like to listen to music and groups that inspire me, make me dance, make me think, or make me feel connected.

Some of my favorites include: Billie Eilish, Maggie Rogers, FINNEAS, Brandi Carlile, Imagine Dragons, Vampire Weekend, Lumineers, Interrupters, Haim, The Bad Man, Sara Bareilles, and lots more.

Justin smiling,Word document on computer screen says

How do you write?

With my right middle finger on a Clevy keyboard with WordQ word prediction software. Check out the video.  I use Microsoft Read Aloud to read back my work aloud when I edit what I’ve written in a Word document. It highlights words as they’re read aloud which helps me with visual tracking.

Check out my YouTube video that shows how I write. I made this when getting ready to give the keynote speech at the Charting the Cs Conference a two years ago.

Why did you want to write this book narrated by a girl with cerebral palsy?

Ok, part of my decision to write this book with a narrator who is a young woman who has the same disability I do was appealing to me because it doesn’t matter what your gender is, what your economic status is, what your race is, and what your sexuality is. Writing is about empathy and being able to see the world from other human experiences.

What genre was your first book that you say was the worst?

My first one was a science fiction/romance novel (or that is what I want to call that).

What does your second book have that the first one didn’t have?

Realistic stuff. I wanted to draw from my own experiences regarding deep brain stimulation (DBS) and having a physical disability. The dialogue for the narrator primarily happens through her communication device. I am able to share a bit more of everyday frustrations through this character than I do in my real life. This book feels more honest to me.

Why don’t you post on social media more often?

Excellent question. One reason is that I don’t have a phone or easy way to post on social media when I’m out doing stuff away from my computer. If I’m out with my mom, we’ll write posts together and then she’ll post on Twitter or Facebook and tag me, always with my permission first! Never tag your kids unless you have their permission! Even when they’re adults! Here’s an example of how my mom and I partner up.

 

I should be posting a lot more than I am and we’re looking into options for phone access, although it’s tricky because physically, I can’t use a phone and we haven’t figured out a good way to use with my somewhat old communication device. And with the amount of time it takes me to type in my communication device, I’d end up missing out on a lot of living if I’m spending all my time typing a short tweet or post.

Second reason is that social media can be a huge time suck so when I’m at home, a lot of times, I’d rather be writing or working on my books, reading books, or watching YouTube.

That’s it for today. I’m probably laying low for a while. I don’t do well with viruses.

All best – Justin

Related posts

Just super

Plotter or pantser?

Done!

The novel

NaNoWriMo and More

Ready for AFC Wimbledon, Art & Writing

 

Plotter or pantser?

I have started planning the next book and I mean that quite literally. I say that because I pantsered the last two books. Although I didn’t know this, I think that I might actually be more of a plotter.

Wait, what is a pantser and plotter?

Ok, when I wrote my first two books, I had an idea of what kind of story I wanted to write, but I had no outline for the books – this is referred to as “pantser” as in fly by the seat of your pants. This makes it harder for me to edit because I don’t have an outline for the novel and made it difficult to get unstuck when I had writer’s block and not sure what direction to take the story.

I’m outlining everything in the next book – this is referred to as “plotter.” So, for my next book, when I draft, I have my map to go back to. The nice thing about a map is that I can stay on the path I charted out, but there are lots of possibilities of how to get to my destination – and if I get started down a path that’s not working for me – I can always change where I’m going. But I have a starting point, a general idea of where I’m going, and what I’ll find when I get there.

Wait, what about the book I just finished?

In my last post, I said that I just finished the draft of my book and I’m taking about a month off and then will start working on editing. I couldn’t wait on outlining my next story though because the ideas are bursting in my brain.  Don’t worry, I’ll be hard at work on the Until the Lights Die (my own unofficial title) draft.

One cool thing, if you’re a writer, author, aspiring anything – check out NaNoWriMo.  My friend, Annie, told me about this organization last fall and I love the community of writers. When I posted on the NaNoWriMo Facebook group that I had finished the first draft of my book – I had 185 messages of congratulations, and 2.1 thousand likes within hours. WOW! What a great community for encouraging writers to keep going. We have important stories to share with the world!

Wait, do I ever take a break?

Yep, fun concert last night at the Fine Line. Saw Weathers and Echosmith.

This Tuesday, 2/25/20. will be a busy day for advocacy – another thing I love! Disability Day at the Capitol is in the morning and a great way to learn about issues impacting people with disabilities.  Find out more about the event on The Arc Minnesota 2020 Disability Advocacy day site.

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

And don’t forget, if you live in Minnesota, the Precinct Caucus is this Tuesday. Why is it important to go to your caucus? For me – it’s supporting my awesome State Representative Ami Wazlawik and supporting Justin Stofferahn who is running for my State Senator. Time to flip our senate seat blue! It’s not all about the presidential election – local politics matters! It’s an important year – get involved!

That’s all for this week.

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!

 

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