Another typical week

Just a reminder – my typical weeks are why we need to protect Medicaid and make sure we have access to good, affordable healthcare!

Speech therapy on Tuesday. Communication device fell off my chair but fortunately seems to be working just fine. My speech therapist made some brilliant changes so that I can’t accidentally hit the speak bar when selecting a word-prediction choice. And, I can more easily program my own buttons now on my Quick Stuff page. Watch out world!

Also, got my thigh strap contraption repaired while I was speech appointing. It broke last week.

Appointment with my complex movement team doctors on Thursday. Trying some new Deep Brain Stimulation settings. 4.5 volts seemed to be too high and ended up making my movement even weirder so went back to 4.0 volts. In a couple weeks, dad will sneakily without my knowing switch to a 3rd new setting that turns on 2 different leads that are deep in my brain. One of the coolest things, was that my neurologist did a “software update” on my stimulator implanted in my chest and now the stimulator should last for another decade before having to be replaced. We had thought that it would need replacement after 7 years which would have been in about another 4 years. The fewer surgeries the better since I have had issues with staph infections. The grand experiment of Deep Brain Stimulation (DBS) continues.

Friday night was Dead Pool 2 night while charging my DBS. It takes about 1-2 movies a week to charge my DBS.

Upcoming surgery on November 9th to remove my lower braces – and an out-of-whack lower tooth. YAY!!!!!!!

Had an awesome end of the week when I went door-knocking for Ami Wazlawik who is running for MN State House Representative for 38B. She’s awesome! Made my dad come along and help out this time!Back of man and Justin in his wheelchair walking down street

(P.S. I’m actually at my pre-op physical when this is being posted on my blog. The magic of scheduling blog posts on WordPress!)

Midterms Part 1: People with Disabilities Vote!

I can’t even tell you how excited I am about voting in two weeks. I know a lot of people like early voting which is super convenient and easy, but I like going to the polls. It is so cool to roll in and check in on the big registration list. I have my dad or a helper take my signature name stamp and stamp next to my name on the big, long list. Then we take the slip of paper over to go pick up my ballot. Then we go over to the wheelchair accessible voting booth. I have who I want to vote for programmed into my communication device and let my helper know who to mark down as my choices. When we’re done, we go over and put the ballot in the ballot sucker upper machine. I put the “I voted” sticker on my chair or on me. I feel awesome! And proud! Even if my candidates don’t win – I’ve done my part.

If you have a disability, you CAN and SHOULD vote! It is our right! Here’s more information from Arc Minnesota about voting in 2018. Our voices matter!

Check back tomorrow for my post about who I’m voting for and why.

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.