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?
On Monday, I got to go hang out and volunteer with my young friend, Roa, who also has cerebral palsy. He’s in elementary school and reminds me of me when I was that age. I remember playing hide and seek in those same hallways during recess when I was his age. In the winter, when my wheelchair couldn’t get through the snow outside, several other kids would stay in and play hide-and-seek in the school hallways with me. I bet we disrupted lots of classrooms because I have a contagious laugh!
I didn’t really ever know anyone with CP or a physical disability when I was growing up. I think it would have been easier if I had had a mentor in elementary school. Just to know that I wasn’t alone. Thanks to my former therapists and teachers for connecting me with this amazing young man.
He has a grace in him that maybe people don’t always see. I see him. I see the boy who smiles, whose eyes light up, who is driving his chair faster and more independently than when I first met him two years ago and is getting so much better at using his communication device. He likes telling jokes which is something I loved to do in elementary school!
Sometimes we all need kindness and hope and grace. I find it when I get to hang out with Roa.
Happy holidays to you all. Wishing you all hope, grace, and kindness.
These past two weeks, I’ve been having thoughts on my feet and stuff.
- My feet are a pain. And because of that, I am in pain. It’s a non-stop hard-to-be-distracted-from kind of pain. My mom asked me what number yesterday. Because that’s what my mom does. I said 5 to 7. I’m waiting to see my orthopedic doctor in about a week.
- Pain makes me exhausted. It’s hard to hold my head up when I’m exhausted. When I’m in pain.
- Here’s the thing. I don’t stand, not even to transfer to/from my wheelchair anymore because it’s too painful. Ankle-foot orthotics (AFOs) never worked very well for me because of my strong uncontrolled movement – my feet fought the AFOs and eventually I said “no more.” So, now my feet, are misshapen, aching, bent, etc. I don’t know what’s next for my feet.
- Okay – it just is – you get used to it – all the things I tell others and tell myself. You get used to it when you’re me. Yes, I deal with it. We deal with it. But, sometimes it really just does suck.
Other random thoughts:
- I have 140 pages written in my book.
- I went to the Legislative Update by the Minnesota Council on Disability on Monday afternoon to learn about different legislative efforts for the next session. Just because the election is over doesn’t mean there isn’t a lot of work to do during the upcoming session. It’s important to make our voices heard! Finally saw my picture with former Senator Dave Durenberger in the hallway between the Senate Office Building and the Capitol. Cool!
- I took a short break from my social media break. I had to jump on Twitter for the Project 4 Awesome fundraising live video by Hank and John Green Friday to this morning. They’re my favorite vloggers (video bloggers) and authors. Maybe next year, they’ll caption the live stream, so that people with hearing loss, who need closed captioning, can be included. I love that they’re able to raise over $1.5 million for good causes and wish that they’d also caption the livestream.
- Last Doctor Who for the season is tonight. Will recharge my DBS battery and watch my now favorite Doctor! This has been a great Doctor Who season! If you got tired of watching in the last couple of years, you should give it a go!
Social media is getting too many hours of my life, time that I could be using to read, write and get work done. Because of this, for the next couple of months I’m going to cut back my time on social media so I can focus on writing my first draft of my book and my blog.
I also need to learn more about changes to how my staffing will work with my Consumer Directed Community Supports (CDCS) waiver funding which is how I pay for support staff and other adaptive equipment costs not covered by health insurance or Medical Assistance. Minnesota Department of Human Services (DHS) is now requiring that I become my own small business to continue hiring my own support staff. Up until now, an agency had been the employer of record for my staff. There’s a lot to learn and lots of paperwork for my parents and me to wade through. I’ll still be here, but I won’t be on Facebook or Twitter as much.
Here are three reasons why I am putting some limits on my social media:
- Experience: In my book, my two main characters are on the run. They can’t exactly use social media to contact anyone. So I plan to experience what my two characters are going through, to give a better description.
- It is time to shut down: After reading An Absolutely Remarkable Thing by Hank Green (absolutely amazing book!), I have been doing some rethinking about how I use social media. Sometimes it doesn’t feel like a very healthy reality.
- I have too much other work to get done and there’s lots of other fun stuff to do. Like on Monday afternoon, I’m going to the Minnesota Council on Disability’s Legislative Forum on Disability. Being a disability rights and inclusion advocate means I need to stay informed about legislation that impacts my world.
Starting next week, I’m taking a break for at least the next several weeks, and then will be checking infrequently. You can message me through my blog and my mom will be keeping an eye on my Facebook @JustinSmithWrites page if you are trying to reach me. My mom will tag me in any of her Facebook or Twitter posts if anything cool is happening with me.
Have you ever had a social media blackout? Any tips on how to survive it? Wish there were some football (as in SOCCER) matches to go to! At least I have AFC Wimbledon to watch online and FIFA 19 to play on my PC. GOAL!