Disability – JustinSmithWrites

The novel

I’m feeling fantastic about how the novel I’m writing is panning out and the characters…OMG! Awesome!

I’ve set a deadline for the first draft and it’s literally on Valentine’s Day. Might finish it sooner than that, but my goal is Valentine’s. The reason why I picked that date is because my book is a romance, mostly. It is about human relationships and what we do when a relationship doesn’t work out.

I’ve got to finish what I hope is a brilliant book and step away from it for a month or two (break for political season – caucus, primary, legislative session, ADVOCACY!). Then, I have to self-edit the thing. Then send it to critique partners. Edit some more. Send it to beta readers. Edit some more. And maybe send it to sensitivity readers. And maybe, edit some more.

My book is a mystery romance novel narrated by a young woman with cerebral palsy and she is searching for a former friend. The reason why I wanted to write this book is because I never really attempted to write a novel about how I was feeling when I was fifteen or sixteen. This is when I went through multiple deep brain stimulation surgeries, had a surgical site infection, etc. It was a somewhat confusing time in my life, and I can bring some of those feelings and experiences into this story I created. I have never attempted to write about how I perceive my disability and I needed to write a realistic story about this.

Back to work on my book.

p.s. NaNoWriMo Report: wrote every day and ended up with 5 more pages than my goal.

Midterms on Nov 6: Clear choice for me in Minnesota

The DFL candidates all are more supportive of disability rights and issues that impact my ability to choose where I live with the supports that I need to be included in my community. Social services that support people with disabilities to be able to live in their communities are critical. This means fighting for:

Affordable healthcare and Medicaid (Medical Assistance in MN)
Affordable, wheelchair accessible housing
Inclusive job opportunities and education

Tim Walz has gone out of his way to come and talk to me from the first time I met him at the Organizing District and State DFL Conventions. He has made me feel that I do have a seat at the table. He supports the very services that I depend on to help me live and participate fully in my community. I am included as part of #OneMinnesota.

I also stand with Senators Amy Klobuchar and Tina Smith and Representative Betty McCollum in bringing their voices to the US Senate and House. They will help defend Medicaid which is so critical to those of us with disabilities. Cuts to Medicaid will impact me and others you may know who depend on Medicaid for support staff, medical care and equipment. They also speak up for fairness, respect, and decency for all.

My family has received countless negative attack flyers against Ami Wazlawik, who I support for State House District 38B. She is an awesome candidate who listens to people in her community and has done nothing but run a positive campaign. I’m signed up to help with door-knocking again next weekend! I know she will be there to listen to my concerns or about issues that are important to me when she’s elected to the State House. Because she is doing that now!

Issues that impact the disability community matter. Who is listening to those of us with disabilities? Who is going to fight for issues that matter to us? My vote is with Walz/Flanagan, Klobuchar, Smith, and Wazlawik.

You can learn more about the candidates and make your own choices from MPR Voter Guide or Star Tribune Election Guide.

I’m not asking for a miracle

One of the songs I like by CHRVCHES is Miracle. I’ve been listening to it over and over. And over. And over lately. I’m not asking for a miracle but I, and my parents, are struggling with what comes next. What does my adult life look like? Especially socially, because right now, I’m feeling kind of isolated.

I’ve had some great opportunities to speak at different conferences and speak out about disability rights. I’ve made some awesome professional connections. I’ve gotten involved politically and made some wonderful connections there, too.

But, day in and day out, I feel kind of lonely. I hang out with my support staff who are awesome. I don’t really have any friends that I hang out with, though. I read books and watch movies and shows about young people hanging out. That’s rarely been my world. The last time I had friends that I hung out with was with my church youth group – they all went off to college or on with their lives. How do you meet new friends when you’re not in college, you’re not working at a job, and you have a difficult time hearing and communicating?

Right now, I am not asking for a miracle. I just wish there were more opportunities for people with disabilities to meet people and feel more included.

“Ask me no questions, I will tell you no lies
Careful what you wish for
We’re looking for angels in the darkest of skies
Saying that we wanted more
I feel like I’m falling, but I’m trying to fly
Where does all the good go?
We’re looking for answers in the highest of highs
But will we ever, ever know?

And I need you to know I’m not asking for a miracle
But if love is enough, could you let it show?
If you feel it could you let me know?
(Oh, oh) if you feel it could you let me know?
(Oh, oh) I’m not asking for a miracle

Ask for forever when the end is in sight
Showing what you want to
We’re looking for light inside an ocean of night
But will we ever see it through?”

Songwriters: Lauren Mayberry / Martin Clifford Doherty / Iain Andrew Cook / Steve Mac

Miracle lyrics © Universal Music Publishing Group

Governor’s Forum on 9/13 cancelled

I just got this cancellation yesterday for the Governor’s Forum that I was looking forward to going to on Thursday.

“Unfortunately, event cosponsors have had to cancel the event due to lack of confirmation from the candidates. We are still working to ensure that candidates for Minnesota Governor address and prioritize issues of importance to members of the disability community, and hope all of you will connect with candidates to share your personal stories as well.”

I feel disappointed that I won’t be able to hear from the candidates about where they stand on issues that truly matter to me as a young adult who depends on support services and Medical Assistance to live in my community.

As I said in my last post, we need a Governor and legislature that will do everything they can to protect services so that people with disabilities receive the care and services they depend on. Ask candidates what they will do to protect health care, Medicaid, and support services for people with disabilities.

We need to make our voices heard so that candidates know how important these issues are to the disability community!

I’m excited to read former Senator Dave Durenberger’s new book, When Republicans Were Progressive. He was most proud of the bi-partisan work to pass the Americans with Disabilities Act (ADA). I was so honored to meet him and present with him at last year’s MN Capitol Grand Opening Celebration (YouTube: my speech and Senator Durenberger’s speech). Listen to the Minnesota Public Radio interview with Dave Durenberger. It is a bipartisan book! Launch party is on October 16th!

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 14^th, 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.

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

On August 14^th, 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.

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.

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.

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.

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!