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 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.

Justin shaking hands with Tim Walz with Peggy Flanagan smiling

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!

Ami Wazlawic and Justin Smith smiling

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.

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.

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

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.