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I am retiring my blogger site and have moved to a new, improved WordPress blog site. Go check out my new blog site!

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Justin Smith
JustinSmithWrites.com

Getting ready for Charting the C's Conference

Video blog for my latest update

Check out my latest video about how I get ready for being a keynote speaker and having several breakout sessions at the upcoming Charting the C's Conference. At last count, there will be about 650 educators, therapists, and K-12 school professionals at the main conference. 

My keynote presentation title is Reimagining the Possibilities: A Work in Progress. I'll be sharing my insights and perspectives about living with a disability that impacts movement, speech, hearing, and vision and why inclusion and accessibility matter. 

Watch for my next post in a couple weeks with more about technology that helps me do what I want to do. Lots left to do in the next couple of weeks, so time to get back to work! 

You can also go to my YouTube channel to watch this video and some others that I've posted over the past several years. 

Show Up and Dance with Me!

Show Up

It was an exciting day yesterday. I was a delegate to my Senate District’s Organizing Convention. I believe it's so important for young people and people with disabilities to SHOW UP and get involved in the political process. You can have a voice in the nominating process and resolutions that help build the political parties. I don’t care what political party you are supporting, SHOW UP!

Justin at Senate District DFL Organizing Convention

Justin with his US Representative Betty McCollum

State Delegate Justin with Alternate Delegate Emily

And Dance

Also, thanks to the staff at Palace Theater last night. It’s always nerve wracking to go to new places and not know what the accessibility will be like – especially for things like concerts or places with crowds.The ADA general admission seating area was awesome. And the staff was great at helping me navigate paths through the crowds. And the bathrooms set aside for ADA were amazing! They were huge and no lines! My favorite song was Shut Up and Dance and my mom’s was One Foot. Thanks to random acts of kindness and the nice young women who helped push my stuck wheelchair out of the snowbank on our way back to the parking ramp. 6" of snow makes sidewalks and roadways a mess!

Started off the day being political and ended up dancing! It was an AWESOME day!

Fun dancing with the cool strangers behind me!

Walk the Moon at the Palace Theater

With Me

Next up with me:

Speaking engagement coming up – I will be the keynote speaker and also have a couple of sessions at the Charting the C’s Conference in April. My keynote speech is about Re-imagining the Possibilities: A Work in Progress and the importance of inclusion and accessibility. Excited to be invited to speak to educators and therapists working in schools! Find out more about Charting the C’s in the conference brochure. 

Don’t forget to be awesome,

Justin

Contact information page

Life as I Know It

I haven’t written much lately. I try to be positive about living my life and don’t always share when life gets hard. Lately, it’s been kind of rough, though.

I thought I’d be excited to get my new wheelchair. Yesterday, I about drove into the garbage cans at the Mall of America, when my joystick got stuck in drive. Luckily, my mom, got to me and turned the chair off before I crashed. How do I be independent when I can’t count on my equipment? My new chair has been one frustration after another. First, I am having a difficult time getting the seating to work well for me and it took about three months to get the appointments for working on seating in the first place. Because of my movement and muscle tone, everything needs to be customized and incredibly sturdy. Also, the joystick just broke after only three months of use. I continue to work with my clinic’s seating specialist and physical therapist, our equipment provider, and vendor to try to figure it out. Wish me luck in trying to get this chair to work. Without a working power chair, I feel excluded from the world.

Pain. Pain. Pain. As I’m getting older, I spend a lot more time in my wheelchair (yes, the non-working one), even less time weight-bearing or exercising, and that is taking its toll. My hamstring, ankle and knee on my right leg have been a 6-8 on a 10-point pain scale over the past several weeks. Pain is exhausting! I’ve seen an orthopedic doctor and now waiting to get into my physical rehab doctor to see if it’s time to try botox again. Haven’t done that since elementary school and never tried it on my leg. Hoping my medical team can help figure out how to help me feel better.

And my family is a pain, too. Oops, I mean they’re in pain, too. My dad has a bulging disk in his back which is causing him a lot of pain. He’s my main caregiver so need him to feel well. My mom is doing a lot better after having foot surgery in November. We try to take turns on being messed up in our family. So far, Nathan, never has taken a turn on being messed up. My younger brother is really cool and helpful!

On a lighter note (because even when life is feeling a little upside down, I try to focus on the positive), the fifty-second Super Bowl was in Minnesota, my home state. I wasn’t able to get to any of the Super Bowl Live events, because, see above. But, it was fun to watch on tv. The game was awesome, even though the Vikings weren’t in it.

Next up, I’m going to the Walk the Moon concert at the Palace Theater in a couple weeks no matter what! And I’m preparing for some March Madness! Hopefully, just the basketball kind, and not related to medical madness!

P.S. Call your US House member and ask them to vote “NO” on HR 620, a bill that will weaken the Americans with Disabilities Act (ADA).

Hello 2018, Goodbye 2017

Top things I look back on from 2017

1. Making my voice heard – If you would have told me a year ago that I would be featured in a Microsoft Inclusion in Action video series that hundreds of thousands of people would be watching, I would have said, “are you kidding me?” I feel honored that so many people were able to see my story about why accessibility is so important in helping me do so many of the things I want to do.
2. Along with the Microsoft video, I also had some amazing opportunities to share my story. I spoke with former Senator Dave Durenberger and Dr. Colleen Wieck at the Minnesota State Capitol Grand Opening and at the Global Accessibility Awareness Day event at the MN Department of Education. 
3. Travel to Toronto- Despite numerous buildings not being accessible, it was fun with getting soaked on the boat ride at the powerful Niagara waterfalls, a baseball game, and museums. This was an awesome family trip and my first time to leave the country!
4. Advocacy for disability rights- this year has been interesting with the push to slash Medicaid and the Affordable Care Act. I’m going to say the same thing I said in previous posts. So many people with disabilities DEPEND ON Medicaid and health care to live independently in our communities. Please do NOT slash Medicaid and other important services that we depend on.  The disability community, our friends, and families WILL NOT give up the fight for protecting the services that move us forward in embracing inclusion and independence.

 Looking forward to 2018

1. Public speaking about accessibility and disability rights
2. Getting involved with our state and federal campaigns- I want to do my part to make sure that candidates that support disability rights are elected to office.
3. College – continuing to plug away. Learning all about Political Science this spring.

I am grateful for the viewers to take the time to read this blog. Have an awesome New Year all of you! 

Tax Cuts and Jobs Act

Just say no

I have fought and will continue to stand against every single attack to cut Medicaid because of these three words - freedom to choose. People with disabilities should have the freedom to choose how to live their lives and I can only do that with the help of Medicaid. 

The Medicaid funding I receive helps me live in my home, hire support staff, and pay medical costs not covered by my family’s private insurance. This support matters! It has made it possible for my parents to work. They have not been bankrupted by high medical costs. I have received medical treatment, equipment and care that helps me be more independent and make an impact on the world.

There is so much in this tax bill that could harm the most vulnerable in our communities. If this tax plan goes through and has the negative impacts to Medicaid that are expected, I am terrified  that many of us with disabilities who need Medicaid to live in our communities will lose our freedom to choose how to live our lives because the services we depend on will be severely cut back.

Call your senators and tell them to vote NO to this tax bill!

Here is the Arc statement on the Tax Cuts and Jobs Act

“We vehemently oppose this bill and the threats it poses to people with intellectual and developmental disabilities”

Washington, DC – The Arc released the following statement in response to the House of Representatives passing theTax Cuts and Jobs Act on 11/16/2017:

“The Arc has a longstanding position that tax policy should raise sufficient revenues to finance programs that support people with disabilities to live and work in the community. The Tax Cuts and Jobs Act does the opposite. By reducing revenue by at least $1.5 trillion, the bill increases the pressure to turn next to cut Medicaid and other programs that are critical to the lives of people with intellectual and developmental disabilities.

“We vehemently oppose this bill and the threats it poses to people with intellectual and developmental disabilities. We now turn our attention to the Senate, which is considering legislation that will also increase the deficit and repeal a portion of the Affordable Care Act that would undermine the entire law. The disability community has fought against threats to vital programs and won several times this year, and we are prepared to do it again,” said Peter Berns, CEO of The Arc.

Turtles All the Way Down

Before I start, for those of you who have not read the book I am going to talk about, this doesn't have any spoilers for Turtles All the Way Down by John Green. The book covers a very serious issue regarding teens, mental health. If you or a loved one is dealing with a mental illness, let the person know there are people who love them. The second thing is get help. John Green reinforced this on his recent book tour, too. It was an awesome book tour and I was lucky to see him and his brother, Hank, in Minnesota! 

I think  Turtles All The Way Down, is, by far, one of the best teen books with a character with a mental illness. The narrator, Aza Holmes, starts off by stating, ''AT THE TIME I FIRST REALIZED I might be fictional, my weekdays were spent at a publicly funded institution on the north side of Indianapolis called White River High School, where I was required to eat lunch at a particular time—between 12:37 P.M. and 1:14 P.M.—by forces so much larger than myself that I couldn’t even begin to identify them. If those forces had given me a different lunch period, or if the tablemates who helped author my fate had chosen a different topic of conversation that September day, I would’ve met a different end—or at least a different middle. But I was beginning to learn that your life is a story told about you, not one that you tell.'' John Green has a way of understanding the teenage mindset that is so powerful.  

Aza is a young woman who has Obsessive Compulsive Disorder and a callus on her middle finger from continuing to crack open the cut because she goes into these thought spirals, leaving her to think that she has a microbial infection, C-Diff. Let us take Aza's words when she goes into her thought spiral, particularly when she makes out with Davis, a billionaire's son whose dad goes missing. ''I felt his hand on my shoulder. I spun around and squirmed away from him. My breath running away from me. Dots in my vision. You’re fine he’s not even the first boy you’ve kissed eighty million organisms in me forever calm down permanently altering the microbiome this is not rational you need to do something please there is a fix here please get to a bathroom.'' the thoughts are obsessive and downright compulsive, taking a hold of her and causing the stoppage of making out.  

Aza goes on to talk about the ''invasives'' with Dr. Singh, a psychiatrist who quotes a lot of people. For example, when Aza quotes Descartes' ''I think therefore I am,'' ''No, not really. A fuller formation of Descartes’s philosophy would be Dubito, ergo cogito, ergo sum. ‘I doubt, therefore I think, therefore I am.’ Descartes wanted to know if you could really know that anything was real, but he believed his ability to doubt reality proved that, while it might not be real, he was. You are as real as anyone, and your doubts make you more real, not less.” Descartes' philosophy plays a role in the book that makes the book so precious and powerful.  

John Green opens up about him having OCD in this sometimes dark and haunting novel and I think that experience matters in books. At the end of the novel, John Green writes, ''I, a singular proper noun, would go on, if always in a conditional tense. But you don’t know any of that yet. We squeeze his hand. He squeezes back. You stare up at the same sky together, and after a while he says, I have to go, and you say, Good-bye, and he says, Good-bye, Aza, and no one ever says good-bye unless they want to see you again.''  

My recommendation - read this book right away and don't forget to be awesome! #DFTBA

See my post about tax cuts next week. Goodbye.  

Inclusion in Action

I am honored to be featured in Microsoft’s Inclusion in Action video series because it shows how I use technology to share my voice with the world and just how important technology is for me every single day of my life. The video of me is being released on Monday, 10/30/17 at 11:00 CST. If you found my blog because of the Inclusion in Action video series, thank you for finding me and welcome to my blog.

''What people don't understand is that technology is my way to communicate with the world," I say in the video. Assistive technologies like an adaptive keyboard, joystick mouse, word prediction software and captioning all help me use the computer. I use my communication device to help me speak because people have a hard time understanding my speaking voice. I move around thanks to my power chair. I even have tech implanted in my body - my deep brain stimulator helps calm my movement and makes it a little easier to do what I want to do.

Since starting college, I have some new favorite technologies. As you saw in the Microsoft video, Immersive Reader in Word and OneNote Online has made it so much easier for me to read documents. I wish I would have had it years ago because it would have made high school curriculum way more accessible for me. I have visual tracking difficulties and with Immersive Reader I can set the text size, spacing, and it highlights the words as they’re read.

I don’t Skype with people often, but Microsoft Translator also was very helpful for me in the calls with Microsoft leading up to the video. I would see the real-time captioning while we were in the Skype call. I have auditory neuropathy which makes hearing difficult so captioning is very important for me to better understand what is being said. Thank you, Microsoft!

For reading books, Bookshare is my go to favorite. Have you read Turtles All the Way Down by John Green yet? If you didn’t know, I am a HUGE John Green fan. It was available on Bookshare.org the day it was released. This is a great resource for those with disabilities that make reading print books difficult or impossible. Thank you, Bookshare!

I also rediscovered WordQ at Closing the Gap last year. I use it ALL the time. It has sped up my writing process a lot. Imagine if you can type with only one finger of one hand, and you have uncontrolled movement jerking your arm away often and randomly. As I've written in the past, athetoid cerebral palsy is like every muscle in your body having its own individual brain, none of which listen to your actual brain. As you can imagine, typing takes me a long time. WordQ is simply awesome at cutting down the number of keystrokes to get my words out!

Here are some of my earlier blogposts that you may want to read if you’re interested in finding out more about life as I know it and to inspire you to keep stretching the boundaries of what is possible!

• Being Human - My mom refers to this speech during the video, this was the first time I ever shared my writing in public at our youth group’s annual church service and then submitted to a local writing contest. 
• FrequentlyAsked and Unasked Questions – This post tells more about me, kernicterus, and about my medical stuff.
• Accessibility:What works for me – This is a post that I wrote before my presentation at Closing the Gap in 2016.
• Presentation at Closing the Gap 2016 – This also shows why technology is so important for me.
• Contact me - if you’re interested in following me on social media, contacting me, finding up-to-date info on presentations, writing, etc.  

p.s. I did also get three hard cover autographed Turtles All the Way Down books for family and friends.