Ready to convene

Two years ago, I voted for the first time soon after I turned 18. This year I wanted to get more involved in the process so went to my local caucus. I raised my hand to be a delegate. The next step was going to  the Organizing Unit convention. I caucused for disability rights and Tim Walz for Governor and was selected to be a delegate to the State Convention. The State Convention is this weekend and I’m so excited to be there and make my voice heard for issues impacting people with disabilities

What are some of those issues?

Justin with I voted sticker on next to Vote Here sign and US Flag

  • Protect Medicaid and services for people with disabilities. The federal government cut 7% of funding for Minnesotans receiving Home and Community Based Services for living in their communities. I could potentially see cuts to my waiver budget for staffing this year because this year’s state budget bill did not pass. We need a Governor and legislature that will do everything they can to protect services so that people with disabilities are able to live in their communities.
  • Education that is inclusive and accessible for all students is a common issue for students with disabilities. Funding education for K-12 and ensuring that there are real options for transition age students to have the supports they need to attend college are important.
  • We need to select a governor who can work productively with either party to get stuff done. Both parties need to compromise and figure out how to keep moving our state forward while protecting and making sure services are available for those of us with disabilities so that we have the supports we need to live independently.

So, this weekend, I will see what a State Convention is all about. I’ll be doing what I can to make sure that people are aware of how important it is for our state to stay strong when faced with threats to Medicaid and other services that people with disabilities depend on.

One Month until the World Cup: Who do we root for?

I love to watch sports and so I thought I’d write about something other than accessibility, disability rights, or politics for a change. As we get ready for the World Cup, the United States is not in. So since I’m from the United States who should I root for?FIFA World Cup Russia 2018 logo

Since I am a huge fan of underdogs, I have to imagine a world where countries, who are not expected to win, go to the finals, play teams like Germany or Britain, and win. I can already hear the announcer yell “GOOOOOOOAAAAL” and a 1-0 nail-biter end. So I’m excited to watch the games, not caring which teams are playing, and have fun.

BTW, I will be posting more often, so please leave ideas for topics in comments.

I’m here and stuff

Welcome to my new blog site! I’ve moved my blog to JustinSmithWrites.com

I’ve been learning how to set up everything in WordPress, which has been fun. It’s pretty easy to use. So, sign up to receive notifications for when I post a new blog from my new site. Let me know what you think!

It has been a busy couple of months for me.

Charting the Cs Keynote and PresentationsJustin smiling with audience seated at tables in background

I had a great time and met some awesome new people at Charting the Cs. I also got to see some old friends. I loved that families and kids got to get together on the Family Day. It’s so important for families who have kids with low-incidence disabilities, to be able to come together to share fantastic ideas, learn and to have fun together. It is important to remember that even though we may face challenges in living with disabilities, we are also part of families.

And we are part of a larger family and community. This was a great event to have some fun, learn new stuff, enjoy hanging out with others who get what it’s like to be in our shoes.

Charting the Cs was a great conference for educators and therapists to learn and share ideas about helping all kids learn and I was glad to be a part of it. Here are some quotes from my keynote and presentations:

Justin in elevated wheelchair with screen displaying closed captions behind

How are we preparing our young people, with and without disabilities, to live in an inclusive world, if we don’t first have meaningful inclusion in schools. This is where we all are learning to live, work, and play together. Don’t you think that meaningful inclusion in schools would lead to more meaningful inclusion everywhere else? How can we make it work better?

No one ever said it would be easy, there will be barriers along the way, but that doesn’t mean we don’t try. Inclusion matters. Accessibility matters. It’s not enough to talk about it – but we need to figure out ways to do it and to do it better.

So, you may think you have a simple end goal, but the face of reality seeps into life and you just get to figure out how to keep working towards that end goal even when the challenges get in the way.

Technology is changing all the time. It’s important to keep trying to find the tech that works best for you.

This is what my high school paraprofessional said: “You taught me to focus on the ABILITY of a person and not their disability.  There isn’t just one way to complete a task. It’s my job as an educator to find a way for all students to be able to show me their knowledge of the curriculum.”

Happy Belated Global Accessibility Awareness Day

I showed up in a couple Microsoft videos on Global Accessibility Awareness Day this year. What great messages about empowering every person, inclusion, and accessibility! Check out the Microsoft blogs with videos:

Global Accessibility Awareness Day: Ensuring inclusive learning for all your students blog and video

Reimagine accessibility and foster inclusion in the modern workplace blog and film

Time for Some Politics

In two weeks, I am off to Rochester for the DFL State Convention. This will be my first and hopefully not last time as a state delegate. It is so important for people with disabilities to show up and be included in the political process. There are so many legislative attempts right now that could result in cutting services that people with disabilities depend on for living in their communities. I will do what I can to advocate for strong support services and healthcare for as long as I breathe. We need to support candidates that support disability rights, independent living, and real choices!

Video blog for my latest update

Check out my latest video about how I get ready for being a keynote speaker and having several breakout sessions at the upcoming Charting the C’s Conference. At last count, there will be about 650 educators, therapists, and K-12 school professionals at the main conference. 

My keynote presentation title is Reimagining the Possibilities: A Work in Progress. I’ll be sharing my insights and perspectives about living with a disability that impacts movement, speech, hearing, and vision and why inclusion and accessibility matter. 

Watch for my next post in a couple weeks with more about technology that helps me do what I want to do. Lots left to do in the next couple of weeks, so time to get back to work! 

Life as I Know It

I haven’t written much lately. I try to be positive about living my life and don’t always share when life gets hard. Lately, it’s been kind of rough, though.

I thought I’d be excited to get my new wheelchair. Yesterday, I about drove into the garbage cans at the Mall of America, when my joystick got stuck in drive. Luckily, my mom, got to me and turned the chair off before I crashed. How do I be independent when I can’t count on my equipment? My new chair has been one frustration after another. First, I am having a difficult time getting the seating to work well for me and it took about three months to get the appointments for working on seating in the first place. Because of my movement and muscle tone, everything needs to be customized and incredibly sturdy. Also, the joystick just broke after only three months of use. I continue to work with my clinic’s seating specialist and physical therapist, our equipment provider, and vendor to try to figure it out. Wish me luck in trying to get this chair to work. Without a working power chair, I feel excluded from the world.

Justin in wheelchair typing on communication devicePain. Pain. Pain. As I’m getting older, I spend a lot more time in my wheelchair (yes, the non-working one), even less time weight-bearing or exercising, and that is taking its toll. My hamstring, ankle and knee on my right leg have been a 6-8 on a 10-point pain scale over the past several weeks. Pain is exhausting! I’ve seen an orthopedic doctor and now waiting to get into my physical rehab doctor to see if it’s time to try botox again. Haven’t done that since elementary school and never tried it on my leg. Hoping my medical team can help figure out how to help me feel better.leg wrapped in pillow strapped in wheelchair

And my family is a pain, too. Oops, I mean they’re in pain, too. My dad has a bulging disk in his back which is causing him a lot of pain. He’s my main caregiver so need him to feel well. My mom is doing a lot better after having foot surgery in November. We try to take turns on being messed up in our family. So far, Nathan, never has taken a turn on being messed up. My younger brother is really cool and helpful!

On a lighter note (because even when life is feeling a little upside down, I try to focus on the positive), the fifty-second Super Bowl was in Minnesota, my home state. I wasn’t able to get to any of the Super Bowl Live events, because, see above. But, it was fun to watch on tv. The game was awesome, even though the Vikings weren’t in it.

Next up, I’m going to the Walk the Moon concert at the Palace Theater in a couple weeks no matter what! And I’m preparing for some March Madness! Hopefully, just the basketball kind, and not related to medical madness!

P.S. Call your US House member and ask them to vote “NO” on HR 620, a bill that will weaken the Americans with Disabilities Act (ADA).

Show Up and Dance with Me!

Show Up

Woman hugging Justin, both wearing Walz Flanagan stickers

It was an exciting day yesterday. I was a delegate to my Senate District’s Organizing Convention. I believe it’s so important for young people and people with disabilities to SHOW UP and get involved in the political process. You can have a voice in the nominating process and resolutions that help build the political parties. I don’t care what political party you are supporting, SHOW UP!

And Dance

Also, thanks to the staff at Palace Theater last night. It’s always nerve wracking to go to new places and not know what the accessibility will be like – especially for things like concerts or places with crowds.The ADA general admission seating area was awesome. And the staff was great at helping me navigate paths through the crowds. And the bathrooms set aside for ADA were amazing! They were huge and no lines! My favorite song was Shut Up and Dance and my mom’s was One Foot. Thanks to random acts of kindness and the nice young women who helped push my stuck wheelchair out of the snowbank on our way back to the parking ramp. 6″ of snow makes sidewalks and roadways a mess!

Justin with woman and man all smiling

Started off the day being political and ended up dancing! It was an AWESOME day!

With Me

Next up with me:

Speaking engagement coming up – I will be the keynote speaker and also have a couple of sessions at the Charting the C’s Conference in April. My keynote speech is about Re-imagining the Possibilities: A Work in Progress and the importance of inclusion and accessibility. Excited to be invited to speak to educators and therapists working in schools! Find out more about Charting the C’s in the conference brochure.

Don’t forget to be awesome,

Justin

Contact information page

Hello 2018, Goodbye 2017

Top things I look back on from 2017

  1. Making my voice heard – If you would have told me a year ago that I would be featured in a Microsoft Inclusion in Action video series that hundreds of thousands of people would be watching, I would have said, “are you kidding me?” I feel honored that so many people were able to see my story about why accessibility is so important in helping me do so many of the things I want to do.
  2. Along with the Microsoft video, I also had some amazing opportunities to share my story. I spoke with former Senator Dave Durenberger and Dr. Colleen Wieck at the Minnesota State Capitol Grand Opening and at the Global Accessibility Awareness Day event at the MN Department of Education.Justin in MN Senate Hearing Room
  3. Travel to Toronto- Despite numerous buildings not being accessible, it was fun with getting soaked on the boat ride at the powerful Niagara waterfalls, a baseball game, and museums. This was an awesome family trip and my first time to leave the country!
  4. Advocacy for disability rights- this year has been interesting with the push to slash Medicaid and the Affordable Care Act. I’m going to say the same thing I said in previous posts. So many people with disabilities DEPEND ON Medicaid and health care to live independently in our communities. Please do NOT slash Medicaid and other important services that we depend on.  The disability community, our friends, and families WILL NOT give up the fight for protecting the services that move us forward in embracing inclusion and independence.

 Looking forward to 2018

  1. Public speaking about accessibility and disability rights
  2. Getting involved with our state and federal campaigns- I want to do my part to make sure that candidates that support disability rights are elected to office.
  3. College – continuing to plug away. Learning all about Political Science this spring.

I am grateful for the viewers to take the time to read this blog. Have an awesome New Year all of you!