The Interrupters up close

Amazing concert on Wednesday at the Varsity Theater! Can’t even describe how awesome this concert was! The pictures say it all – this band is energizing and exciting. Justin and dad in front of theater marquis for sold out Interrupters April 3After the last song, the band threw t-shirts, drumsticks, guitar picks, and sheet music out to the crowd. The lead singer, Aimee, saw me and brought me a hat! And I got a hug – after she asked if it was okay to give me a hug! It’s always good to ask!

You’ll never believe this – the manager noticed us and asked if we’d like passes to meet the band after the concert. I still can’t believe it!

We hung out while the crowd left. And then got to meet the band – who by the way are incredibly nice and cool! They didn’t know it, but it’s going to be a rough several months for me after my foot surgery in 3 weeks. This concert and meeting them, is going to make it easier to go through the rough times. Thanks Aimee, Kevin, Justin and Jesse! Never underestimate the impact you have on people who are going through hard times.

Fight like a title holder 
Stand like a champion
Live like a warrior
And never let ’em break you down

Title Holder YouTube video

Finally, the Varsity Theater in Minneapolis was very accessible for me. After getting our tickets sorted out, we went to the reserved spot that was right up front to the left of the stage. We didn’t check out the accessible bathroom so can’t report on that. My chair elevates so I raised it up to standing height and it was amazing to be so close to the stage. The security guys were awesome – gave us water and earplugs and were really nice.

Interrupters on stage

Can’t wait to see the Interrupters again. Maybe Duluth in July??? Hopefully am recovered from surgery by then!

Find out more about the Interrupters and their concert tour on the Interrupters website.

Justin and Kris in concert crowd

Barriers to Inclusion Part 3: Employment

In the 2018 fiscal year, 16 percent of Minnesotans with disabilities who received state services worked in the community alongside people without disabilities.  Chris Serres, Star Tribune, 3/16/19

How is this real? That number needs to be a hell of a lot higher than 16%. I am NOT one of the 16% by the way… although I did get paid to be a keynote speaker a year ago. That was my first and only paid work.

We have to rethink what employment looks like and be open to a variety of work options for people with a wide variety of abilities. For example, I want a part-time job with the option to work from home. I love to write and advocate for disability rights and am good at public speaking. I love testing out assistive technology, applications, and pretty good at using WordPress. I have a lot to offer, it just takes me longer to do what I want to do.

I think it’s time to rethink traditional college and how some of us with disabilities can get our first jobs – especially those of us with severe physical disabilities. I’ve written about this before, but the amount of time and energy for me to take just 1 college course is a lot. One college course means that I have very little time for doing anything else like writing in my blog, getting out in the community, advocating for disability rights, or more importantly going to concerts. I’m not sure it’s the best use of my time and would take me about 8 years to get an Associate’s degree. So, what kid of job am I going to get without a degree? Or do I need to create my own kind of work because when I’m not a college student, I don’t get to do internships or have those other entry points into the writing or communications work I’d like to do.

Smiling Jennie Delisi, Jay Wyant, Kris Schulze and Justin Smith

Let’s all get more creative and figure out how we can connect people with jobs, especially those of us who aren’t following traditional paths.

Read the article Minnesotans with disabilities fight barriers to inclusion, unfilled promises by Chris Serres. Really, read it right now! And share with all of your friends, family and random strangers!

And read the first two parts of my Barriers to Inclusion blog post week. Really, read them right now! And share with all of your friends, family and random strangers!

Barriers to Inclusion Part 1: Inclusion

Barriers to Inclusion Part 2: Caregivers

Here are a couple of  posts from a younger me related to college and work:

20

Inclusion in Action

Random Thoughts

Justin in wheelchair with movie lights, 2 men looking at him with video camera

 

The scary part of editing

Why did I write this book? It seemed like a good idea at the time I started writing, but now that I am editing, let us just say that there are moments when I feel like the book should be thrown into the garbage can and then the garbage can should be thrown into the center of an ocean. Or maybe just hit delete.

I like the character of my narrator and love the idea imagining what my life might be like if I didn’t have a disability and happened to be a vigilante. In my book, I can go anywhere, be anyone, do so many things that I can’t do in my real life. I can’t just hop on a plane and go to England or Paris or Egypt or Italy. In fact, I’m not able to fly anywhere right now because I don’t have a good way to bring along the equipment I need or sit in an airplane seat since there are no shoulder harnesses to help hold my body up.  And, there are places that would be cool to go to that just aren’t very accessible if you use a power wheelchair. Any travelling means lots of research to figure out if places will be accessible enough.

Also, in my story, my characters just talk effortlessly and don’t need to use a communication device. I am thankful for my communication device so I can communicate my own thoughts and ideas. It’s also fun to imagine if people could just understand my voice without it taking so long to type out everything I want to say.

Through my characters, I get to imagine a different reality.

So, back to editing. It is making me think about life.

p.s. It was actually easier to travel when I was younger because I had a seating system that could strap into a plane seat, wheelchair was less complicated to fix if it got broken,  and easier to carry me or my chair to inaccessible places. Here are some of our more memorable family vacations to Washington D.C., Florida, Yellowstone, Grand Tetons, and Toronto. I get a do-over to D.C. because that was the year I got the flu after the first day and spent the rest of the trip sick in the hotel room!

Justin, dad and brother at Santa Monica End of the Trail sign11-year old Justin with younger brother and dad, White House in backgroundJustin and dad with group of people on float raftJustin as a boy at top of board walk ramp with sandy beach and oceanJustin in front of Moose statue012375ef8a70833ae3e8b4e732d6fba202baa9f152

Wheels in Winter

Unfortunately, AFC Wimbledon did not win today meaning that they’re not going to the quarter finals of the FA Cup. Ahhhh…

My good news story for the day is even though we’ve had a ton of snow over the past couple weeks, downtown Minneapolis near The Local had clear sidewalks and curb cuts. It’s usually kind of nerve wracking to go downtown after lots of snow, because it’s hard to find street parking spots where we can drop my wheelchair lift. And, it can be really hard to move around if there’s a bunch of snow piled up on sidewalks and blocking curb cuts. For example, last year when I went to a concert, I got stuck trying to get back to my van because the snow was piling up. So, great job City of Minneapolis and businesses near The Local! I had no problems getting from my van to my soccer/football match on time with no drama.

Breakfast at The Local was awesome! You have to try the French Toast Bites! Justin in his wheelchair and dad crossing street

It was really nice having the Minneapolis experience this weekend, because just a week ago, was this example closer to home. Check out the push button to open the automatic door on this building. Don’t think any wheelchair can get close enough to reach that one.
Justin in wheelchair outside door with pile of snow in front of accessible push button

Other stuff coming up this week:

  • Disability Day at the Capitol is on Tuesday, 2/19/2019! I’ll be there making my voice heard for disability rights!
  • Friday is my follow up with the orthopedic ankle/foot specialist and hope to figure out what to do with my painful big toe.

2018, see ya

3 things I will always remember

  1. Door knocking for Ami Wazlawic – my new State Representative! I think I liked that even more than being a delegate at the State Convention. I think the parties need to think about how they’re endorsing candidates so that more people can be involved in the process.Ami Wazlawic and Justin Smith smilingKris and Justin smiling
  2. Spoke at Charting the C’s Conference – a lot of work but felt amazing to be the keynote speaker and to present in a couple sessions with my mom, Jennie Delisi and Kim Wee. It’s awesome to have the opportunities to share my experience with such amazing people! Justin with 2 womenJustin smiling with audience seated at tables in background
  3. Writing my unfinished first draft of my book and my blog – I even moved my blog to WordPress which I’ve found very accessible and easy to use. To write is to be free.Justin looking at computer

Read more posts about my favorite 2018 things

Volunteering and participating in political process

VOTE on 11/6 if you haven’t already

Midterms on Nov 6: Clear choice for me in Minnesota

Midterms Part 1: People with Disabilities Vote!

Why it matters

Vote! My letter to the editor

Adjournment

Ready to convene

Show Up and Dance with Me!

Charting the Cs Conference

I’m here and stuff

Video blog for my latest update

Writing

Writing with WordQ (NO POLITICS, really!)

Happy summer

Anyone else have this problem?

 

Writing with WordQ (NO POLITICS, really!)

As some of you may know, I’m writing a novel that is currently 130 pages long and going. I couldn’t have written this much independently without word prediction. I am using WordQ, a software that speeds up my writing process a ton.

WordQ is a word prediction software I had tried when I was in later elementary school. Then I stopped using it because my old Windows computer was glitchy and would freeze up whenever I was using that older version of WordQ. So, for many years, I didn’t have any word prediction software. I would either type a letter at a time with my middle right finger or hope that whoever was helping me understood my voice well enough so that they could type what I was saying to speed up the process. Either way, it was a long, frustrating process. Really Long Beyond Words Frustrating.

Three years ago, when I presented at Closing the Gap, I met Fraser Shein, the president of Quillsoft, maker of WordQ. My dad and I talked to him about some of the problems I had when I first tried WordQ and Fraser set me up with an updated version to try out. This time it worked great for me!

I start typing a word and a separate popup screen shows me 5 numbered choices so that all I need to do is type the corresponding number. I usually can type most words in just a couple key strokes. Huge time saver for me! HUGE!

I use WordQ for typing anything – emails, blogposts, social media, and most importantly typing my book. It is simply brilliant! If you’re looking for word prediction software, I strongly recommend that you try it out. Check out this video of me using WordQ as I prepared for Charting the C’s presentations last spring.

By the way, you don’t need to have a disability to use WordQ. My dad is just a bad typist, and it helps speed up his typing, too! Good tech can be used by anybody, whether you have a disability or not! To learn more about WordQ, please check out the WordQ website.

Below is a screenshot of how words show up in the word selection pane. 

Screenshot of WordQ Word Selection panel

Another typical week

Just a reminder – my typical weeks are why we need to protect Medicaid and make sure we have access to good, affordable healthcare!

Speech therapy on Tuesday. Communication device fell off my chair but fortunately seems to be working just fine. My speech therapist made some brilliant changes so that I can’t accidentally hit the speak bar when selecting a word-prediction choice. And, I can more easily program my own buttons now on my Quick Stuff page. Watch out world!

Also, got my thigh strap contraption repaired while I was speech appointing. It broke last week.

Appointment with my complex movement team doctors on Thursday. Trying some new Deep Brain Stimulation settings. 4.5 volts seemed to be too high and ended up making my movement even weirder so went back to 4.0 volts. In a couple weeks, dad will sneakily without my knowing switch to a 3rd new setting that turns on 2 different leads that are deep in my brain. One of the coolest things, was that my neurologist did a “software update” on my stimulator implanted in my chest and now the stimulator should last for another decade before having to be replaced. We had thought that it would need replacement after 7 years which would have been in about another 4 years. The fewer surgeries the better since I have had issues with staph infections. The grand experiment of Deep Brain Stimulation (DBS) continues.

Friday night was Dead Pool 2 night while charging my DBS. It takes about 1-2 movies a week to charge my DBS.

Upcoming surgery on November 9th to remove my lower braces – and an out-of-whack lower tooth. YAY!!!!!!!

Had an awesome end of the week when I went door-knocking for Ami Wazlawik who is running for MN State House Representative for 38B. She’s awesome! Made my dad come along and help out this time!Back of man and Justin in his wheelchair walking down street

(P.S. I’m actually at my pre-op physical when this is being posted on my blog. The magic of scheduling blog posts on WordPress!)