“Another turning point, a fork stuck in the road”

Green Day has this quote from the song, Good Riddance (Time of your Life), that I keep listening to over and over and over. I am at a turning point in my writing career, with my first book I wrote and I just can’t decide whether or not to throw it away. It’s hundreds of hours of working on this novel and let’s be straight, it is terrible. I didn’t expect that I would write a “good” first draft. Not sure if anyone is capable of writing a good first draft?

I’m having more fun writing my new book giving voice to a young woman with athetoid cerebral palsy (CP) who uses a communication device. As a young man with CP, I haven’t found many main characters who look or sound or experience life like I do. We need more main characters who speak with communication devices or use wheelchairs or whatever. I need to be able to see me or someone I can relate to in the books I want to read.

I’m also at a turning point in college. As some of you may recall from previous posts, I tried to take an online class. It didn’t go exactly well and I dropped the class. And I am at a loss as how I want to keep learning or what I want to learn about. In college, I can get CART captioning that I need during a lecture or class. If I’m taking a class at a private or community Art or Literary Center, I’m not sure that they’d have to provide CART captions. I have some research to do to figure this out.

Lastly, you know about the toes, probably. My big toes are STRAIGHT. It still is a pain in the butt, but it’s less than before. No casts, check. No pins, double check. I have PT on Monday so can start working on transfers and building my strength again so I can get back to one person helping me with transfers instead of two. Here’s a picture of my dad adjusting my foot rests to work with my cast-free feet.Dad working on wheelchair footrests with Justin's feet strapped in

Speaking of the road, we did have an overnight road trip to see my grandma and grandpa for the 4th of July. My mom wanted to spend her birthday with her parents in Pipestone. Happy birthday mom! My first road trip in a long time and it was fun hanging out with my family! My parents and I are making plans now for a big road trip next spring to D.C. and Philadelphia. I want to go to the Disability Policy Seminar in D.C. in March 2020.

This is the video of the Green Day song I mentioned from YouTube.

Also, here’s a White Bear Pioneer Press photo of the Manitou Bears that Shine and a link to the Manitou Days Facebook post about my being recognized as a Bear that Shines. That was really nice and I’m honored to be recognized!

And here are a couple pictures from our Pipestone road trip.

Grandma, Dad, Mom, Justin and Grandpa sitting around table with birthday cheesecakeJustin with his grandpa

 

Barriers to Inclusion Part 3: Employment

In the 2018 fiscal year, 16 percent of Minnesotans with disabilities who received state services worked in the community alongside people without disabilities.  Chris Serres, Star Tribune, 3/16/19

How is this real? That number needs to be a hell of a lot higher than 16%. I am NOT one of the 16% by the way… although I did get paid to be a keynote speaker a year ago. That was my first and only paid work.

We have to rethink what employment looks like and be open to a variety of work options for people with a wide variety of abilities. For example, I want a part-time job with the option to work from home. I love to write and advocate for disability rights and am good at public speaking. I love testing out assistive technology, applications, and pretty good at using WordPress. I have a lot to offer, it just takes me longer to do what I want to do.

I think it’s time to rethink traditional college and how some of us with disabilities can get our first jobs – especially those of us with severe physical disabilities. I’ve written about this before, but the amount of time and energy for me to take just 1 college course is a lot. One college course means that I have very little time for doing anything else like writing in my blog, getting out in the community, advocating for disability rights, or more importantly going to concerts. I’m not sure it’s the best use of my time and would take me about 8 years to get an Associate’s degree. So, what kid of job am I going to get without a degree? Or do I need to create my own kind of work because when I’m not a college student, I don’t get to do internships or have those other entry points into the writing or communications work I’d like to do.

Smiling Jennie Delisi, Jay Wyant, Kris Schulze and Justin Smith

Let’s all get more creative and figure out how we can connect people with jobs, especially those of us who aren’t following traditional paths.

Read the article Minnesotans with disabilities fight barriers to inclusion, unfilled promises by Chris Serres. Really, read it right now! And share with all of your friends, family and random strangers!

And read the first two parts of my Barriers to Inclusion blog post week. Really, read them right now! And share with all of your friends, family and random strangers!

Barriers to Inclusion Part 1: Inclusion

Barriers to Inclusion Part 2: Caregivers

Here are a couple of  posts from a younger me related to college and work:

20

Inclusion in Action

Random Thoughts

Justin in wheelchair with movie lights, 2 men looking at him with video camera

 

Barriers to inclusion

Today, Chris Serres, reporter for the Minneapolis Star Tribune, wrote an excellent article about how Minnesotans with disabilities are fighting barriers to inclusion and unfilled promises. I love seeing Chris Serres’ articles because he gets it. He’s able to tell the world about what it’s like to try to navigate this system and what happens when the system fails people with disabilities.

This week, I’m going to be sharing my experiences and thoughts about inclusion, services, and moving towards independence, all in three action-packed posts. I am trying to navigate this system and learning as I go. It’s not easy to figure out a path towards independent living as the system is set up now. I am not an expert in all of these services and options but will offer my ideas on what I think would make sense for me as I, with the help of my parents, try to figure out my future.

Part 1: Inclusion

This is my definition of inclusion: a community of diverse backgrounds embracing each other in open minds and open hearts. I’ve written a lot about this in the previous posts. I want to live with as much choice and independence as possible. Isn’t this what anyone would want?

For inclusion to happen, I need to have services and supports in place that help me live the life I want to live in my community.

  • Caregivers are critical for me to live an independent life. I need 24-hour care and receive funding to cover about half of that care. We need to rethink models for care giving and independent living. I’d love to partner with others who live near me – kind of like a staffing cooperative. And what about inclusive co-housing options that include people with AND without disabilities?Do not miss Part 2 tomorrow!Man with arm around Justin, We belong in the community sign hanging on front of Justin's wheelchair
  • What is my path to employment or giving back to society? So far for me, that has meant taking some college courses, writing my blog and book, and having some amazing opportunities for public speaking. But, I have no idea what’s next in my path to an actual job. Read more about this in Part 3 later this week.

Read the article Minnesotans with disabilities fight barriers to inclusion, unfilled promises by Chris Serres. Really, read it right now! And share with all of your friends, family and random strangers!

Disability rights are human rights! Inclusion matters!

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.

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!