What is up in my world?

Celebrate!

Hey, how awesome was last night’s Governor Walz and Lieutenant Governor Flanagan Inaugural Celebration?  Super AWESOME! Fun music, dancers, and so much excitement!

Selfie with Justin, mom and dad

Here are some of the picture highlights. Congratulations to Governor Walz and Lieutenant Governor Flanagan! I loved being a delegate for them in the caucus, organizing unit convention, and at the State DFL Convention. I loved volunteering however I could and writing blogposts in support of them and other political candidates and issues that I believe in.Justin, his parents, Lieutenant Governor Flanagan and Governor Walz

Time for #OneMinnesota where we ALL, including those of us with disabilities, have seats at the table!

 

Justin and man using wheelchair at inaugural celebration

The big toe annoyance

Justin dressed up and smiling

Update on my foot. I wasn’t able to have botox last week because I had a little cold earlier in the week so now it’s rescheduled for the end of January. When I get botox, I get nitrous oxide to help with the pain – can’t have nitrous when you’ve had a recent cold. I do have a dislocated-ish big toe and will need to figure out how to deal with that. First, we have to see if we can calm down the muscle tone with botox and then decide what’s next to fix the toe.

My red Acorn socks rock and look great with buffalo plaid for inaugural celebrations!

 

GOTV and CHVRCHES

GOTV

Busy week this week. For the first time ever, I went door-knocking with my mom. I’m hoping to get out more in the next month for Ami Wazlawik for MN State House 38B and my other favorites like Tim Walz for Governor, Amy Klobuchar, and Tina Smith for US Senate. Each of these candidates support disability rights and issues that are important to me, like affordable health care for all and protecting Medicaid.

So, get out and vote! Make your voice heard!

Chvrches

 

Another awesome concert at the Palace Theater in St. Paul. Chvrches was amazing and energetic! The wheelchair accessible seats at the Palace are great – no one can stand in front of me and block my view.IMG_20181002_205925370

As we get closer to winter, it’d be nice if they’d let those of us using wheelchairs enter by the shorter will-call line. There were really long lines and it’s easier for people in wheelchairs to get their spots before it gets too packed.

By the way, my Mom loves being able to type messages back and forth with each other on my communication device because it’s super loud and hard to hear when you’re at awesome concerts.

 

 

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!

Justin reaching out to air-fist bump with Senator DurenbergerI’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!

Why it matters

Governor Candidates’ Forum on 9/13

There are some key issues that impact people with disabilities that I think everyone should be thinking about as they decide who to vote for in the midterm elections. I’ve said this in previous posts and will say it again – SHOW UP! It’s important to show up now and find out more about where candidates stand on issues that impact people with disabilities. On September 13th, I will be going to the Governor Candidates’ Forum on Disability to support Tim Walz who I caucused for last winter and supported in the State DFL Convention (check out my Adjournment post to see the news report I was featured in!). I believe that he will support the issues that matter to the disability community.

2 in 5 people have disabilities and 1 in 10 have severe disabilities. We are your family. We are your friends. We are your neighbors. We are your constituents. We are you, at the moment when you get a life-changing diagnosis or are in a crash where you may end up with a permanent disability. In a blink of an eye your life may become one where you need Medicaid or social services to help live independently in your community.

 

Health care and support services

I know that I say this every time I write about this, but health care is freedom for people with disabilities. Cuts to health care and Medicaid means losing freedom. Medicaid, known as Medical Assistance in Minnesota, is my lifeline for medical care, support staff, medical equipment and assistive technology that help me live a full life in my community. 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. If they say that their goal is to cut human services – that means they’re trying to cut the very programs that I and others with disabilities depend on. Do you really want to vote for that person?

There are many other issues impacting people with disabilities, including affordable housing, transportation, employment, education, and finding qualified support staff. All of these issues are important to me as I carve out my adult life. These are the things that matter as I look at candidates and find which ones will also see their critical importance and impact on making sure that people with disabilities are not left behind.

SHOW UP Now!Justin shaking hands with Tim Walz with Peggy Flanagan smiling

If there are candidates you support, go volunteer for their campaigns. Put up some lawn signs. Write letters to the editor. Talk to your friends and family about why voting matters and what candidates you support. Go out and vote in November. SHOW UP!

Also, big shout out to my Aunt Kelly Smith who is running for State Representative in Kentucky. Proud of her and hope she wins! Kelly Smith For Kentucky website

 

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.

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.