Appearances may be deceiving OR how something might appear accessible but in reality…

Here’s a quick story of what was to be a short walk with my mom, on a lovely sunny day,  to the new accessible little park down by the lake. And when I say accessible, I mean NOT really at all accessible for me or probably any other wheelchair user. In fact, they probably could have left the curb cut out because people are only going to get more stuck the further they go.

Part 1 – “Lovely day for a walk to the lake”

Says my mom, all the time! It’s a holiday in the U.S. so I went along. I drove my chair while my mom tried to keep up. I wasn’t even on the fastest speed.

Part 2 – Look the newly redone little park even has a nice curb cut

Says my mom. One car and bike go past and the next car stops to let us cross the street to the park. Mom takes a couple pictures because really, it’s nice that our township redid this park and tried to make it more accessible. Right? We should post and tweet about that, it’s a good thing.

Justin in wheelchair on curb cut with path to lake ahead

Part 3 – ZZZ WRONG!

We start our way down the black, rocky path which is wide enough for a wheelchair. So, that’s good. My wheels begin to sink as we near the bench. We maybe should have stopped here. But, thought it would be easier to turn around if we went down to the turns or to the bottom of the path. Again, WRONG! We got to the lower turn on the path, and my drivewheel was spinning deeper and deeper. I was spectacularly stuck.

Justin in wheelchair with wheel sinking into rocky path

Part 4 – Dad to the rescue

Mom can’t get me unstuck. Mom calls dad. Dad drives the several blocks to the park. Dad also thinks maybe we can get turned around on the larger rocks at the bottom of the path. Both mom and dad are able to help drive and push me to the bottom. I didn’t go into the lake. I swore. Dad swore. Mom maintained her calm, positive outlook on the situation. Dad gets me out of my chair and carries me back up the path where my mom holds me on the bench. Reminder for all, I use a wheelchair, because I am not able to sit independently, let alone walk. My dad wrestles, pushes, drives, swears his way up the path with my chair until he passes us on the bench and gets it back to the solid curb cut. Mom and dad carry me from the bench back to my chair. (Sorry, no pictures of dad pushing chair since mom was holding me on the bench and dad was pissed – imagine the pictures we could have taken!)

deep tire tracks in rocky path

Part 5 – MOM, YOU’RE INCORRIGIBLE and when designing for accessibility, perhaps someone should do some user testing to see that it’s actually accessible

Nothing more to say about adventures with mom part. Really, I do love my adventures with my mom. Even though we seem to get stuck at times…

Whoever designed this park and whoever from our township thought they were making a park that was wheelchair accessible were wrong. I doubt that anyone tested this out with an actual human being who actually uses a wheelchair. I use a power chair and the path failed horribly. I don’t even know how someone who is using a push chair would make it on this path. It’s not packed down solid enough.

The flowers are lovely… I just don’t get to see them up close, anymore.Justin smiling with park and lake behind

NEXT ACCESSIBILITY CHECK: Maggie Rogers concert at the Armory in Minneapolis later this month.

“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