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.

An Authentic Experience: Brilliant Young Adult Novel about Family

This past week, I’ve been catching up on reading. Here’s the book review I promised in my last blogpost. This was a great summer read!

Kelly Wittmann’s Young Adult novel, An Authentic Experience, is about a fifteen-year-old girl, Silver, whose family is in shock when her mom is diagnosed with a brain tumor. Her parents are divorced, and she ends up living with her dad who is not the best at parenting and parties hard. Her parents wanted Silver’s life to be authentic and not peer-obsessed, so they homeschool her. Her grandparents don’t get along with the parents on many levels, especially about the homeschooling. Her best friend is her cousin who is really the only friend Silver has and helps her through the tough times that Silver is experiencing.

This is a brilliantly written novel about how family doesn’t always get along and shows how Silver grows into her authentic self as she comes to terms with her family as well as a traumatic event that she experiences. I would recommend it to everyone who likes Young Adult fiction (YA). Wittmann is a brilliant writer and I hope she writes more YA novels because she understands that not everything is perfect.

You can find out more about the author on her website. An Authentic Experience is available on Amazon.

 

Marijuana, college, and more

Medical Marijuana

Recently, I have been trying medical marijuana and it has worked better than most medications that I tried. One of the components, CBD, is a pain-killer and has worked on the joint pain in my knees and hips.

Screenshot of Medical Cannabis page of MN Department of Health website

College

Recently, I toured a local private college and I decided that I am probably not going to pursue a private liberal arts college at this point. Right now, I’m still working on communicating more quickly, which is what I would need to do if taking more college courses. Even taking one class at a time at my community college, takes up most of my time because of how long it takes me to type on my communication device and even on my computer.

The time and energy it takes to do more than that, would mean my life would feel pretty crazy. I want to also do other things, like stay involved in helping get my favorite candidates elected this fall, explore other work opportunities, continue public speaking, blogging, and creative writing.

So, my search is for creative paths besides college, where I can do what I love to do, continue to learn, and make a difference in the world while balancing that with the time and energy it takes just being me.

Politics

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

On August 14th, don’t forget to vote in the primaries, if you live in Connecticut, Vermont, Wisconsin or my home state of Minnesota. Early voting in Minnesota is underway if you can’t make it to the polls. If you are voting in MN, you can request your early voting absentee ballot from the MN Secretary of State’s Office website.

I’m going to go vote in person because it’s cool to go to the polls on election days. I’ve loved being more involved in the political process where I can make my voice heard about issues that matter to people with disabilities. So, show up and get involved! Vote! Elect candidates that will support the issues that matter to you. Show up!

Next blog post

A review of the brilliantly written young adult novel, An Authentic Experience, by Kelly Wittmann.

Question for you

I want to ask you something. What do you want to see me write about in future blogposts? Comment or send a message with your ideas.

 

Happy summer

I’m having a pretty low-key summer. My mom and younger brother are ditching me and my dad to go spend almost 3 weeks in Germany. My brother’s been studying German since 6th grade and my mom studied for a semester in Germany a really, really, long, long time ago. Mom, could you please bring me back some World Cup Germany Futbol socks!

Other stuff happening this summer

Some Sports

FIFA World Cup Russia 2018 logo

I’m having an awesome time watching the World Cup. Thrilling. Exciting. Nail-biting.

I am a huge fan of AFC Wimbledon so have been following them online. They are a fan-owned team.

Some Medical Stuff

I just started trying out medical marijuana and will let folks know how it’s going in a month or two. The hope is to reduce pain in my knees, hamstrings, and hips and calm involuntary, jerky movement and muscle spasms. Minnesota has approved the use of medical marijuana.

Some Writing

Continuing to write my action-packed, mystery, romance novel. I’m on page 86. I’m going to get a bunch done when my mom and brother are on vacation.

Some Politics

The Minnesota Primary is coming up on August 14. I am going to volunteer for the candidates I support. If you live in Minnesota, remember to go VOTE! It’s important! If you’re not around on August 14, you can vote by mail or in person through August 13. Check out more information about voting at the Secretary of State’s website.

Some Ideas for the Future

My dad and I are going to go tour Augsburg University on Wednesday. I have been taking classes at Century College, a community college near where I live. I’ve heard really good things about Augsburg and would like to see if it might be a good fit.

Don’t forget to be awesome!

Thank you, Dad!

People may not always realize that family life might look a little different when someone in the family has a disability. My dad has been there for me from day one and is not only my dad, but also my main caregiver. He has been home full-time for the past 2 years. During that time, we’ve been figuring out how and what I need to live as an independent adult. He was there with me through every weekend of Partners in Policymaking. He even got to be my helper at college when we couldn’t find a daytime personal care attendant.

Justin in wheelchair, dad holding Justin's foot

My dad fixes and troubleshoots issues with all of my equipment – from wheelchair, to communication device, to shower chair, to wheelchair lifts and ramps. He’s the best cook ever. Seriously, his homemade pizza is amazing! He is there for me for all medical appointments and holding tight during some of my scarier and more painful stays in the hospital. Over the years, he has carried me to the tops of fire towers, lighthouses, onto sandy beaches, swimming in oceans, to wheelchair-impossible corners of Yellowstone and other parks to see waterfalls or other natural wonders – he would make sure I got to experience everything I wanted to experience even when there were barriers in the way.

Dad holding Justin on beach by young boy

I think sometimes people assume that moms are doing everything… in our family, it’s always been both of my parents working together and holding on tight as we go through all the curve balls that life throws at us. I am so lucky to have such loving parents.

Justin in gait trainer giving high five to his dad on accessible baseball field

On this Father’s Day, I am holding on to love and letting my dad know that even though it’s not always very easy, and it may not be the path he had expected, that what he does each and every day rocks. I am who I am today, because he has been there for me through all the crappy times and through the awesome times. I love you, dad!

Adjournment

My first time as a delegate to the State Democratic Farmer Labor (DFL) Convention was definitely exciting and suspenseful! I met some amazing people and loved seeing the political process in action.

Thanks to ABC-6 in Rochester for noticing my blog, reaching out, and then sending a wonderful reporter, Noelle Anderson, to interview me about my experience as a first-time delegate. Here’s the link to the DFL Delegate Strives to Give a Voice to Those Without One report from ABC-6 KAAL-TV. Enjoy!

Justin with reporter Noelle Anderson smiling

(ABC 6 News) — There are 3,000 extra people in Rochester this weekend for the state DFL Convention. Half of those are delegates.

One of those delegates is Justin Smith, a public speaker, blogger and disability rights advocate. He’s only 19 years old, and he’s already become a leader for people with disabilities.

“It is important for me to make my voice heard, and show up and to be an advocate for the change. That’s why I am a delegate,” Justin said. “It’s important that people with disabilities are included in meaningful ways. That includes being involved in the political process.”

Justin lives with Athetoid Cerebral Palsy. He uses a communication device to talk, and that device, as well as his power chair, comes at a cost, which is why he’s advocating for support, to make sure anyone who needs technology and care- gets it.

“He’s able to share his unique perspective on how we can all make this work better. He needs support and full-time staff and health care and special equipment, accessible technology. Technology is key for this kid. It’s his independence,” said Kris Schulze, Justin’s mom.

Kris and Justin smiling

“There have been real threats to medical assistance and health care which mean very real threats to people with disabilities. We need more options for self-determination. I want to live with as much choice and independence as possible. Isn’t that what anyone would want?” Justin explained.

Justin says one in five people in America have a disability and one in four 20 year olds will have a disability before they retire.

“I am terrified that many of us with disabilities who need Medicaid will lose our freedom to choose how to live our lives. This support matters. It helps me make an impact on the world,” Justin said.

This leadership role isn’t new for Justin. Last year he was featured in Microsoft’s Inclusion in Action Video series.

Justin also has his own blog called Justin Smith Writes.