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

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Hello 2019

In 2019 I want to write more about the challenges in front of me to keep moving towards independent living. It’s not easy to figure all this out and I’ll share what I find out in case it helps others in their own lives or just so everyone has a better idea of what’s involved. And, of course I’ll also be blogging about political issues impacting disability rights, weird random stuff and my experiences with accessibility.

As you know, I took a break from Twitter and Facebook to work on my book, mainly. It has been a couple of weeks since I started my break. I probably wrote about the same amount in my book than if I had been on Twitter and Facebook. So, maybe social media isn’t as distracting for me as I thought. I’m okay with not being sucked into the non-stop drama of our current political reality. But, think instead of a total blackout, I’m going to just limit my time on social media – maybe 15 minutes in the morning and 15 minutes in the afternoon.

Here is what I will be focusing on over the next several months because all of these things need to be in place for me to live independently. I love my parents but like any young adult, I really would love to live in my own place in the next couple of years. So, how do I get from here to there?

My first step is that I need to get my Consumer Directed Community Supports (CDCS) Medicaid/Medical Assistance waiver figured out. This is the funding that helps pay for my support staff, adaptive equipment not covered by insurance, etc. I mentioned this in a previous post, Minnesota Department of Human Services is now requiring me to create my own small business to hire and manage my support staff. My parents and I will be meeting with several different providers over the next several weeks to decide if we’ll stay with our current provider or switch to a new one. Then I’ll need to complete all of the paperwork to become a small business and rehire all of my current staff and have them go through background checks again. The provider I choose will handle the payroll but we also need to figure out how to protect me from liability as a small business (this is more than just worker’s comp and unemployment insurance!). There’s a lot to figure out and it has to be done and in place by March in order to keep having the choice and flexibility for me to hire my own staff. This may all sound confusing. That’s because it is. Thanks very much DHS for making my life more complicated than it already was.

Along with figuring out support services, I’m also trying out new ways to continue growing as a writer. I’m going to try finding a class to take either through someplace like the Loft Literary Center, White Bear Center for the Arts or an edX online class. This could be a fun way to stay connected with other writers and improve as a writer.

And, guess what? It’s almost time for the new legislative session in MN! I’m going to try to get to more of the Disability Days at the Capitol to continue my advocacy for disability rights. Just got my tickets to the Walz-Flanagan Inaugural event at the Orpheum. I’ve heard back about wheelchair accessibility and also have asked if there would be CART captioning.

And, I have a whole lot of doctor and therapy appointments coming up this month – one or two a week. I’m getting botox on my lower leg and foot that’s been so painful on January 9th. Hoping it works.

I’m also going to keep having fun listening to music, watching AFC Wimbledon football (soccer) matches, going to concerts, and hanging out with my family. My younger brother is graduating from high school this spring so life is going to have a lot of changes this year for all of us.

Happy New Year everyone!

Too much social media

Social media is getting too many hours of my life, time that I could be using to read, write and get work done. Because of this, for the next couple of months I’m going to cut back my time on social media so I can focus on writing my first draft of my book and my blog.

I also need to learn more about changes to how my staffing will work with my Consumer Directed Community Supports (CDCS) waiver funding which is how I pay for support staff and other adaptive equipment costs not covered by health insurance or Medical Assistance. Minnesota Department of Human Services (DHS) is now requiring that I become my own small business to continue hiring my own support staff. Up until now, an agency had been the employer of record for my staff. There’s a lot to learn and lots of paperwork for my parents and me to wade through.  I’ll still be here, but I won’t be on Facebook or Twitter as much.

Here are three reasons why I am putting some limits on my social media:

  1. Experience: In my book, my two main characters are on the run. They can’t exactly use social media to contact anyone. So I plan to experience what my two characters are going through, to give a better description.
  2. It is time to shut down: After reading An Absolutely Remarkable Thing by Hank Green (absolutely amazing book!), I have been doing some rethinking about how I use social media. Sometimes it doesn’t feel like a very healthy reality.
  3. I have too much other work to get done and there’s lots of other fun stuff to do. Like on Monday afternoon, I’m going to the Minnesota Council on Disability’s Legislative Forum on Disability. Being a disability rights and inclusion advocate means I need to stay informed about legislation that impacts my world.

Starting next week, I’m taking a break for at least the next several weeks, and then will be checking infrequently. You can message me through my blog and my mom will be keeping an eye on my Facebook @JustinSmithWrites page if you are trying to reach me. My mom will tag me in any of her Facebook or Twitter posts if anything cool is happening with me.

Have you ever had a social media blackout? Any tips on how to survive it? Wish there were some football (as in SOCCER) matches to go to! At least I have AFC Wimbledon to watch online and FIFA 19 to play on my PC. GOAL!

Smiling Justin sitting in wheelchair at soccer match in US Bank Stadium