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.

Pride, Prejudice & Accessibility

It is a truth, universally acknowledged, that this blog must be in want of a classic accessibility check and a Mr. Darcy and Miss Elizabeth Bennett.

Jane Austen’s books are great, but Pride and Prejudice is one of the perfect examples of what is it that constitutes 19th century love. Take Elizabeth and Mr. Darcy. They don’t even like each other and it takes several months and an insulting first proposal before they know enough about each other to overcome the pride of Mr. Darcy and Elizabeth’s prejudices. I loved this book!

I also love Bookshare and wouldn’t be the reader I am without it, but the web reader’s pronunciations of abbreviations can be irritating. For example, instead of saying Mister Darcy, the web reader says M –  R and pauses like at the end of a sentence then says Darcy. There are 61 chapters in Pride and Prejudice and each has at least 10-30 Mr.’s and Mrs.’s in them. The mispronunciation of abbreviations kind of ruins the flow of the story. This doesn’t happen in every book I read, so I don’t know why sometimes it reads properly and other times the web reader doesn’t.

I sent a note to Bookshare asking if there was a way to have the web reader for Bookshare pronounce abbreviations like Mr. and Mrs. as Mister or Missus. But, there isn’t. So, if you’re looking for a good accessibility project, figure out how web readers can better read abbreviations. It’s 2019, time to figure this out. By the way, I read my draft of this post using Read Aloud in Microsoft Word before copying it to WordPress. Read Aloud reads the abbreviations correctly. Bookshare doesn’t work in Microsoft Edge although it’s supposed to be coming soon. Maybe that will work better?

Hang on a second, weren’t you at an outdoor concert?

Yes at Surly Festival Field. Accessibility was great and I thought that the music was ok. More of my parents’ nostalgia bands than the types of music I like best.

Accessibility report for Surly – get there early to get accessible parking. We got there by 5:30 and gates opened at 5:00 and did get a parking spot. We had to walk about a block and a half from ADA parking to where they were taking tickets. Not sure if they would have let us in at the exit gate which was closer to where we parked. We did exit from there and that was convenient. They had a ramp to a raised platform by the sound booth so were able to see over the crowd of people and didn’t have to drive on uneven ground. Pretty good seats although the platform also filled up pretty quickly with several of us using wheelchairs, a couple knee scooters and others who needed accessible seating. I would definitely go to concerts there again.

Busy week coming up

Can’t wait to see John and Hank Green on Sunday! Anyone who reads my blog knows just how big of a fan I am! I have tickets in the 7th row at the Pantages Theatre. I’m excited that they have wheelchair seating so close. Usually in theaters like this, I end up paying the same as everyone else but the only choice is to sit in the back row. That’s annoying! Especially, if you also have hearing loss like I do!

We’re also going to try to go see Elizabeth Warren at Macalester on Monday. I want to hear from as many presidential candidates as possible to see who I like best.

My brother leaves for college on Thursday… more on this later.

For my web accessibility friends out there, I was trying to find if using the WordPress Tiled Mosaic is accessible. I used the Tiled Mosaic for the grouped images like I have for the concert pictures and pictures above from John and Hank Green events. I just can’t tell if people using screen readers can hear the alt text for the individual images or if I should just add them as individual images. Let me know what you think works best. Thanks!

Ready for AFC Wimbledon, Art & Writing

Six days till the new season

We get to play seven new teams this year. As many of long-time readers know, I LOVE AFC Wimbledon football (aka soccer). Love the idea of fan-owned teams and the story of the club. Excited for the new season and going to The Local in Minneapolis to watch some matches.Justin watching tv in pub

Art

Hung out at the Minneapolis Institute of Arts on Friday – very accessible and air-conditioned. I have long believed in the stories that paintings and pottery tell, shaping the world around us. Sparked some ideas for my next book and was a cool place to hang out on a hot day.

 

Justin and dad standing in ancient doorway arch

Justin driving his wheelchair in front of paintingWriting

Feel as if I’m always working on my first draft of my second book, a realistic mystery about a girl with cerebral palsy. I’m using my own experiences more in this book. This was a more draining week because I was writing about hospital experiences – they’re not the greatest life experiences…

For a break from that, I keep editing my first book, a thrilling romance with a little bit of sci-fi.

Justin driving wheelchair in art institute hallway with statues

Shoes

First time wearing cool shoes in about 8 months. Here’s my past 8 months of footwear.

Justin smiling outside in his wheelchair

Here are some pictures of my footwear and one of x-rays of the pins in my newly straightened out big toes. I started PT last Monday and working on putting a little weight on my foot so I can help out more with transfers. I still have a bit of pain (around 4 out of 10 now) but nothing like it was before the surgery (8), couple weeks after surgery (9), and the rest of the time with the casts on (6 or 7).

“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

 

Everyday conversations and shortcuts

We might not think about how often we use shortcuts for everyday conversations. If you use an Augmentative and Alternative Communication (AAC) device like I do, you might streamline what you want to say. For non-AAC users, it is like texting. You know what you want to say, but you know there is only a few seconds and then the other person has to go or might start finishing what you want to say for you. So, you do what you can to get what you want to say, said as quickly as possible. For me, that means using the fewest number of keystrokes, because keystrokes for me suck up a lot of time and energy.

An example would be “I’m going 2 take pins & casts out mon.” This is true that I am getting my casts off and taking my pins out tomorrow (YAY!).

It is easier to use shortcuts and takes less time even though it’s not a grammatically correct sentence. When I use my Accent 1400 communication device, I use pre-programmed pages for quick common words and then switch to the keyboard spelling page where I can start typing a word and hope that it pops up in the word prediction choices so I don’t have to select every letter in the word. When those choices don’t pop up though, I use shortcuts.

Accent 1400 communication device showing "I can't believe you" typed out

I think sometimes it gets confusing when using a communication device or learning to use a device to know when it’s okay to use shortcuts and when you have to try to type out complete proper sentences. If you’re writing a paper or presentation, you may need to be more formal. For everyday conversations, though, I need to share my ideas as fast as possible, because I find that people aren’t always very patient. So, then I use shortcuts.

My top tips for talking to someone who uses AAC

My top tips for speaking to someone like me who uses a communication device?

  • Wait for me to type. Don’t keep talking while I’m focusing on typing what I’m saying next, because I can’t listen to you and type at the same time.
  • Talk to me and not my helper. This happens. People ask my parents or helpers a question about me and I’m sitting right there!
  • Don’t NOT talk to me because you’re nervous about talking to someone with a disability who uses a communication device. I want to connect, share ideas, and talk with you.  I apologize for the double negative!

YouTube Playlist of me doing stuff

I put some videos of me on my YouTube playlist so you can get a feel for why my Cerebral Palsy and uncontrolled movement make shortcuts necessary.

Summer

My brother’s graduation

My brother is a high school graduate and I couldn’t be prouder…oh, wait, that is what my mom would say. I truly am proud of my younger brother for graduating. My younger brother is awesome and I am proud to call him my friend. Through nerf sword fights and surgeries, he has always been there. He is awesome without having to try.

Justin, dad, graduate brother with cap and gown, mom and Grandma all smiling

Summer things to do when you use a wheelchair

Summertime heat is pretty hard on me. My type of CP means I have lots of uncontrolled movement which means my life is kind of like a non-stop workout. So, I like doing cool stuff in the summer.

Some of my favorite things to do include:

  1. Go to a baseball game. If you’re in Minnesota, both the Twins and Saints games are fun. Get shady seats.
  2. Go to a futbol game. Again, in Minnesota, we now have a new Allianz soccer stadium. Again, get seats in the shade.
  3. Find hiking trails. I put this one in for my mom because she’s the one who likes to drag me out on hikes. Fresh air, sunshine, blah, blah, blah… There are a lot of nice paved trails in our state and local parks. I usually have to go somewhere to hike, because we don’t live in a walkable community – no sidewalks and narrow roads aren’t great for wheelchair users.
  4. Movies if it’s in the 90s and/or humid. What movies are you looking forward to this summer? Up next for me is the last in the X-Men saga: Dark Phoenix.

Marketfest Bears that Shine

If you’re in the White Bear Lake area on Thursday, I’m one of 22 Bears that Shine. We’ll be getting recognized at the main stage at 7:15. For more info check out the Manitou Days Facebook event page. Hope to see you there!