Show Up and Dance with Me!

Show Up

Woman hugging Justin, both wearing Walz Flanagan stickers

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!

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!

Justin with woman and man all smiling

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

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

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.Justin in MN Senate Hearing Room
  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.

Justin with I voted sticker on next to Vote Here sign and US FlagThe 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 GreenThe 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!Turtles All the Way Down book, poster, bag and tour pamphlet

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.

Justin in wheelchair with movie lights, 2 men looking at him with video camera”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.

Advocacy and Action

It has been an action-packed month of advocacy with my presentation at the Capitol Grand Opening in August and being selected by Microsoft to participate in their Accessibility Video Series. I hope that what they filmed is selected for a two-minute film and case study about how I use technology for writing, studying, and connecting to the world. My favorite feature right now is Immersive Reader in Word Online. It highlights the word as it’s being read and I can control text size, spacing, and how many lines are visible. This helps me so much with my visual tracking difficulties and is helping me interact with and read my Psychology textbooks!

Justin reaching out to air-fist bump with Senator DurenbergerOn August 13, 2017, I gave this speech as part of the Hotdish Panel: Remembering the Past and Reimagining the Future – Living with a Disability with former U.S. Senator Dave Durenberger and Dr. Colleen Wieck, Director of the MN Governor’s Council on Developmental Disabilities Director.  What an honor to be able to share the stage with such amazing people. Thanks to the people who came to see our panel and to the MN Department of Administration for the invitation! Check out the great pictures from the event on the MN Governor’s Council on Developmental Disabilities Facebook page.

Hotdish Panel Speech

Thank you for being here today. I can’t believe that I’m here presenting with one of the authors of the ADA. Or the woman who has done so much to improve the lives of people with disabilities from closing institutions to starting Partners in Policymaking.

Thanks to assistive technologies like CART captioning which make it easier to hear, communication device that helps me speak, and power wheelchair that helps me move, I can accomplish so much more and be so much more independent than if I had been born in an earlier time. Let me tell you some stories about my experiences living with a disability and my dreams for the future.

Imagine a small group of high school students, sitting around a computer in my bedroom. There is laughter, sharing ideas and a lot of cookies. A young woman is writing up the plan for our history class presentation. I have my section about Civil rights, disability rights and sports in the 1960s ready to be added to the PowerPoint.

Another student was creating a jeopardy game and 2 guys were figuring out what we would wear. For me this was an experience I will always remember, because we all contributed to the project in meaningful ways to get that “A.”

I believe that we all learned a lot more about teamwork, respecting differences, helping others and knowing that each of us has so much to offer when working together towards a goal. This was inclusion at its best. Unfortunately, that rich group experience did not happen very often for me. Except for my church youth group where I was included like any other teenager.

I have had positive examples of accessibility and inclusion in the real world since graduating high school. My 1st was with my US History course at Century College. My professor was outstanding. Course materials, presentations and quizzes were online and accessible. He emailed me class discussion questions, so that I had time to program responses on my communication device.

For one of the first times in my life, I could fully contribute my thoughts and ideas in class. I learned so much, not just about history, but how one professor can make a positive impact and difference by just taking some extra time to be organized and think ahead of time about what I needed to be successful in his class.

As we move on carving out the future, I hope that educators from preschool through college or other post-secondary options, can keep finding the opportunities for meaningful inclusion to happen. The teacher in my 10th grade class and professor in my college history course both thought about how to make learning work for all students, even those of us with disabilities.

We need more teachers and professors to embrace inclusion and think ahead of how to make it work for all of their students.

These have been some of my experiences in the educational system. What’s next though and what do I imagine for my future?

I imagine a future for myself as one where I choose where I want to live, who I want to hang out with, what I will do each day, and how I will contribute to making the world a better place. The decisions that many of you in this room may take for granted. As I move through the halls of our capitol today, I know that I will be spending a lot of time here as a disability rights advocate.

I need help from government services to live the life I imagine. I need 24 hour care to help me with all my basic personal cares. Imagine that you have to depend on another person to give you a drink of water if you’re thirsty, feed you if you’re hungry, and help you go to the bathroom when you need to go.

It is important for people to realize that I can do what I do because I have special equipment and support staff to help me do these things. I know that these issues have become very political lately, which makes it more important than ever for me to make my voice heard and for you to make your voices heard in our political process.

Legislation that advocates have fought for, like the ADA, Idea for education, Medicaid, and the Olmstead plan all help me live an independent life in my community.

When I met and interviewed Dr. Wieck for one of my high school writing assignments. I remember her telling me what it was like for people with disabilities living in institutions. Her words made a lasting impact on me. She said, when you treat people differently, when you treat someone like an animal, you will get an animal.

To imagine what my future could have been like had I been born at an earlier time is heartbreaking. I am so thankful for all of the advocates who have made it possible for me to have more options now. I graduated from Partners in Policymaking this spring and have learned so much about becoming an effective advocate to continue creating positive change for people with disabilities.

John Green writes in the book Paper Towns, it is easy to forget how full the world is of people, full to bursting, and each of them imaginable and consistently mis-imagined. We all want to be imagined complexly as the individuals we are, not held back because we look, move, or speak differently. I have the same hopes and dreams for my future that many of you aspire to.

All of us are unique and face difficulties. There are many times when I feel like an outsider because I do not think people imagine me complexly, or know what to say to me, or how to talk to someone who uses a communication device. I expect that there are many of you here, who have felt the same.

I think we still have a long way to go with inclusion in school, work and life. I want to have a longer list of examples to choose from for my positive inclusion experiences. It really should be more than a handful of positive examples in 19 years.

So, what can we all do? Think and plan ahead to make sure people are included in meaningful ways.

Go beyond a simple Minnesota nice “hi, how are you?” and realize that I and others with disabilities have a lot to say and need people to take the time to listen. Also, what I learned from Partners in Policymaking is the importance of showing up. Show up here and talk to your legislators. Show up to volunteer on citizen work groups, like I’m doing with the Olmstead Community Engagement Work Group. Show up to vote. This capitol belongs to all of us.

Open your minds to new ideas, new people, and new experiences. It takes every one of us here today, to choose the infinite possibilities to create a more inclusive society, where we see value and dignity in all people.

Frequently Asked and Unasked Questions

Here are the kinds of questions that people have asked me about or sometimes have not asked because they might think it’s not okay. Again, this is from my perspective. Others with disabilities will have different opinions. Just ask people what works best for them.

What do you do?

As a nineteen-year old man with a disability, I am advocating for more choices for the disability community. I’m a college student. I’m a public speaker about accessibility and my experiences living with a disability. I love to write my blog and other stuff. Other things I love – playing chess on my computer, reading, writing, watching political satire and That 70s Show.

What’s wrong with you?

Nothing is wrong with me. I’m not sick. You can’t catch it. I have kernicterus.

What’s kernicterus?

Kernicterus is the brain damage to the basal ganglia that happens because of severe newborn jaundice. For me it resulted in in athetoid cerebral palsy, auditory neuropathy, and visual difficulties.

Seriously? How could this happen?

Black and white photo of dad holding baby Justin

When I was a newborn baby, I got severe newborn jaundice. The doctor and hospital never did a bilirubin test to see how severe my jaundice was. Instead they told my parents that it was no big deal and would go away in a week or two and to follow up with my doctor in two weeks.

My parents say that I was yellow down to my toes when we were discharged from the hospital when I was 2 days old. By the time I went in for my check up on day 10 of my life, my mom and dad thought I was looking much better. They were new parents – what did they know? The doctor did a bilirubin test and sent us home. A couple hours later, the doctor told my parents to bring me to the Neonatal Intensive Care Unit (NICU) for treatment. My bilirubin levels at this point were 29. Way too high for a 10-day baby. I was put under bilirubin lights for the weekend.

It took another 2 weeks before my bilirubin levels dropped to under 15. I most likely had an ABO incompatibility that caused my jaundice to become so bad. It was probably all too late, though. The damage had been done and when I was 4 months old, I was diagnosed with kernicterus. My mom helped me write this section.

Can kernicterus be prevented?

Yes! Easily preventable. Take a bilirubin test. Use the Bhutani Nomogram. Get treatment! NEXT QUESTION.

Are you angry that you have kernicterus?

No. It’s just something I have to deal with. I can’t go back in time and fix it. Bad things happen to people all the time. I do the things I love to do and focus on making the world a better place. I’m pretty positive about life.

What is athetoid cerebral palsy or CP?

Athetoid CP is like every one of your muscles having their own individual brains, none of which listen to your actual brain. Athetoid CP means uncontrolled and jerky movement and it affects every muscle in my body.  My CP is more complicated so I need help with all my basic cares like feeding, giving me drinks, etc. I can drive my own power chair and type on my communication device. I also use an adaptive keyboard to type. My mom understands my voice well, so I can dictate to her and she types what I say really fast! The reason I have deep brain stimulation (DBS) is to try to calm the movement and make it a little easier to do what I want to do. See my blog post Faith in the Midst of Bewilderment to learn more about DBS.

What helps you do the things you want to do?

Technology. Technology. Technology. See my blog post Accessibility: What Works for Me about assistive technologies that help me to learn more about how I do what I do.Justin looking at computer monitor with hand on joystick mouse

Why do you use a communication device?

The communication device IS my voice. It might sound like a computer to you, but it is how I share my thoughts and ideas to the world. My CP also affects all the muscles that I use to speak. People who hang out with me all the time or know me well understand my voice a lot of the time. But, for people who don’t, they can find it really hard to understand my voice. My communication device helps me share my ideas. It takes me a long time to type. Again, CP affects all my muscles. So, give me extra time to type out what I want to say because it takes me awhile to type. A lot of times, I have stuff I want to say programmed in so that I can say it quickly when it’s time.

What is auditory neuropathy (AN)?

Staticky radio for my hearing. Next question.

Is that why you have hearing aids?

Not really. Hearing aids amplify sound, and auditory neuropathy is an auditory processing issue. I hear, but the message gets all jumbled up by the time it gets to my brain. But, I also have high-frequency hearing loss (quiet voices, high pitched sounds are hard for me to hear). The hearing aids help me focus on what is being said. Because of the AN, though, my hearing still is like a staticky radio a lot of times. And then the hearing aids just make the static louder. Overall, it’s better with the hearing aids than without. Some kids with Kernicterus and AN get cochlear implants to help them hear. My AN wasn’t bad enough for that. Closed captioning and real-time captioning (CART) helps me better understand what is being said.

How do you want to be treated?

Like a normal human being. I used to say, like a normal kid, but I’m 19 now. I’m not a kid!

Talk to me, and not over me to my helper or parent. I understand what you’re saying, so don’t ask questions about me like I’m not there.

I don’t really care if you stare at me, but if you have questions, just ask.

Include me and others with disabilities in meaningful ways.

What’s next?

I’m working on captioning my video of my Hotdish Panel and will have that in my next blogpost. Also, started my Psychology class and studying a lot right now. Just living my life…