Random thoughts

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.

edX class

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!

Vote! My letter to the editor

My First Letter to the Editor published in White Bear/Vadnais Heights Press, August 8, 2018

This coming Tuesday, August 14th, is the primary election for governor in Minnesota. As a young person living with a severe disability, I know that the next election can have a huge impact on the disability community. I am supporting Congressman Tim Walz in the DFL Primary for Governor because I believe he will be able to pull people from across the state to protect Medicaid and improve education for all students across the state.

We need a Governor and Legislature that will do everything they can to protect Medicaid services that people with disabilities depend on to live in their communities. I’ll be voting for Tim Walz and Peggy Flanagan because they will work together to keep our state moving in the right direction even when faced with threats to Medicaid and other services that people with disabilities need.

Tim Walz was a teacher and knows the importance of making sure that education is inclusive and accessible for students with disabilities. Funding education, special education, and making college more affordable are important in making sure that all students are ready for the jobs of the future.

We need to elect a governor who can work productively with either party to get stuff done. The needs of the disability community do not change depending on what party is in control. Tim Walz will keep moving our Minnesota forward and make sure that those of us with disabilities are not left behind.

 

 

 

 

 

20

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.