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!
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.
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.
3 things I will always remember
- 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.
- 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!
- 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.
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
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 with WordQ (NO POLITICS, really!)
Anyone else have this problem?
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.
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!
(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!)
Busy week this week. For the first time ever, I went door-knocking with my mom. I’m hoping to get out more in the next month for Ami Wazlawik for MN State House 38B and my other favorites like Tim Walz for Governor, Amy Klobuchar, and Tina Smith for US Senate. Each of these candidates support disability rights and issues that are important to me, like affordable health care for all and protecting Medicaid.
So, get out and vote! Make your voice heard!
Another awesome concert at the Palace Theater in St. Paul. Chvrches was amazing and energetic! The wheelchair accessible seats at the Palace are great – no one can stand in front of me and block my view.
As we get closer to winter, it’d be nice if they’d let those of us using wheelchairs enter by the shorter will-call line. There were really long lines and it’s easier for people in wheelchairs to get their spots before it gets too packed.
By the way, my Mom loves being able to type messages back and forth with each other on my communication device because it’s super loud and hard to hear when you’re at awesome concerts.
Just how accessible are video games when you only have use of one finger and a joystick mouse?
I started playing Fortnite two weeks ago with one of my personal care attendants (PCA). Yes, my strategy is to be a pacifist, just like my favorite author and vlogger, John Green, and camp out in bushes until most of the other players are dead.
So far, I have noticed that the game isn’t very accessible for me because it relies on a lot of keyboarding to be able to navigate my character around the virtual world. I rely on my two-handed PCA who can keep up with the keystrokes in a fast-moving game to move our character to the safest looking bush inside the eye of the storm…and I have one finger to target and shoot. We’ve finished second place three times. But, my character is a pacifist, so I usually end up dying in the end. Wonder what would happen if the other final character refused to shoot me? Would there be peace in our time?
Music videos with captions
One of my favorite bands, Imagine Dragons, has a lot of music videos with captions. I use CC for everything that I watch and music videos typically aren’t captioned. So, it’s really hard for me to understand the words of the songs. Thanks Imagine Dragons and other musical groups who caption their music videos. Can’t wait until someone starts providing real-time captioning at rock concerts. That would be awesome!
Check it out: Natural by Imagine Dragons
Medical Marijuana update
I’m taking a blend of THC/CBD oral suspension before bed. I have noticed this is helping me sleep much better. With the medical marijuana, I’m able to fall asleep and stay asleep without waking up as often during the night. My parents are enthusiastic not to be getting up every hour or two to readjust me at night.
I was also taking a mostly CBD oral suspension in the morning to help with my jerky movements and pain in my hips, knees and feet. I tried that one for a bit over a month and have taken a break from it. I’m not sure if it was the CBD or if maybe it was just hot weather, but I was feeling very low energy and tired during the day. It was kind of helping with the pain but not a lot. I may try again in the fall, try adjusting amounts, and see if it makes a difference or if I think it’s making me too tired.
In a previous post, I wrote about taking a break from college. I have started taking a Public Speaking course through edX. I love that the lecture is captioned and has a transcript. The site is easy to navigate and very accessible for me.
Have an awesome rest of your summer!
I turned 20 years old this week. A couple years ago, I thought that after high school, I would go to college. Get my Associate’s or Bachelor’s degree. And then get a job as a writer or journalist. Here’s the thing, I’ve started taking some college classes. Two worked out pretty well – got A’s. I also tried to take an online class which didn’t work out as well and I ended up dropping. The amount of writing required for that online course would have taken me countless hours to keep up with. What would have taken many students a couple hours a day, probably would have meant 40-50 hours a week for me – for just one class.
I am now grappling with a dilemma. Do I go to college? Or do I look at other online courses like through Coursera or EdX to keep learning even though it wouldn’t be working towards a college degree? Or do I find a job or volunteer work to start getting work experience? This past 2 years, I’ve had fantastic opportunities as a public speaker. Would people want me as a public speaker, if I’m not also a college student? Was that part of my story that people were interested in?
My family and I are struggling with what are the options for me with what I love to do and what I’m able to do – because honestly it’s difficult for me to communicate quickly and often times people don’t take the time to wait for me to say what I want to say – so where are those opportunities to work or participate in my community like I’d like to when it’s this difficult to communicate? What does a job for me look like where I can interact with others to do the things I love to do? How do I work towards independence if I’m hanging out at home every day? Because, that’s what I’ve been doing lately, and it’s not working.
I really love public speaking about inclusion and accessibility. I love advocating for disability rights. I love writing even though it takes me a long time. I love to share my voice with the world. I love my volunteer work as a mentor to an elementary student who has cerebral palsy and is learning to use a communication device and power chair.
We know some of the next steps. I need to get connected with Vocation Rehab Services to find out what they can offer. I need to reach out to different advocacy organizations to see if there might be volunteer work or internships that might work for me. I need to meet with my social worker to make sure the supports I need are in place so that I can keep working towards my goals.
So, I’m 20 years old. I feel confused, floundering, like I’m trying to get to the top of a long flight of stairs in my wheelchair – not sure what’s at the top of the stairs or how to get there.