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 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…

Hotdish Panel at Capitol Grand Opening on August 13, 2017

Ready for some hotdish?

I have been busy working on my presentation for the MN Capitol Grand Opening. I am excited to be presenting on a Hotdish Panel with Dr. Colleen Wieck from the Governor’s Council on Developmental Disabilities. The title of our presentation is Remembering the Past and Reimagining the Future: Living with a Disability. Hope you can be there!

For more information about the Capitol Grand Opening, schedule, and other exciting events, go to the Capitol Grand Opening website. #myMNcapitol

Other news and updates from my summer

I had a great summer family road trip to Toronto, Canada. Highlights included:

  • Justin in front of Moose statue
    • Hornblower boat tour at Niagara Falls which was amazing! Accessibility tip – bring an extra rain poncho! Wheelchairs aren’t able to go to upper level but lower level of the boat was just fine.
    • Toronto Blue Jays game – was a nice night so they opened the roof.
    • Second City Comedy show – Accessibility tip: you need to enter the building through the restaurant next door as there are steps going in the main entrance.
    • Royal Ontario Museum and the Aquarium were both accessible and fun. Accessibility tip: both gave me a free admission when we asked if any special discounts for people with disabilities or care attendant.
    • Frustrations on the trip were the normal frustrations with inaccessibility. We found lots of steps when heading out to restaurants or other shops and a lot of uneven sidewalks and curb cuts. Imagine moving around in a wheelchair where just an inch can mean the difference of being able to get in or move around easily.
    • I wish hotels had more wheelchair accessible 1 bedroom suites that have 2 beds and 1 pull out couch. That’s what works best for our family. Many hotels only have 1 bed in the bedroom though and that doesn’t work. Makes traveling difficult.

I have another month until college classes start. I’m excited for my Psychology class this fall.

I will be continuing to advocate for disability rights as part of the Olmstead Community Engagement Work Group. Also, will be keeping an eye on legislation that threatens Medicaid services and using my voice to help protect Medicaid. These services are so very important to people like me who are living with disabilities. #SaveMedicaid #ThisIsMedicaid

Random Thoughts

Inclusion in School and Life

I had fun presenting Inclusion in School and Life at the Minnesota Department of Education’s Global Accessibility Awareness Day (GAAD) Event on May 18th. My mom and I talked about the importance of inclusion, barriers I encountered in school, the importance of accessible curriculum and materials, and success stories from this past year after my high school graduation.

Some of my key messages included:

Justin in wheelchair in front of poster that reads "I think that stories, and each other, are the most valuable things that we have." Hank Green

  • It’s more than accessibility, it’s about inclusion. Inclusion means that everyone is contributing to a common goal however they can. For me, it means having accessible materials and discussion questions ahead of time, so that I can fully participate. It means taking the time to think and plan ahead for how to make sure everyone can participate however they can.
  • There need to be more options for transition programs for 18-21 year olds, instead of only the current model. Why not have transition programs located in public colleges and universities for college-bound people with disabilities that need support services or are continuing to work on Individualized Education Program (IEP) goals? Let’s provide real options, alternatives and supports for young adults with disabilities.
  • I have had positive examples of accessibility in the “real” world this past year. My first was with my US History through 1877 course at Century College. My professor was outstanding! Course materials, presentation and weekly quizzes were online and accessible. He sent me an email each weekend with discussion questions that would be asked in class, so that I had time to program responses into 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 about what I needed to be successful in his class. Thank you, Professor!

Next up

  • I have quit my Transition Plus program and will be continuing to take classes at Century College. I’m hoping to find support staff to help me out during the day. I really do NOT want to bring dad to college with me unless it’s absolutely necessary!
  • I am excited to have been selected to be on the Olmstead Community Engagement Workgroup. I will be bringing my voice and perspectives as the youngest person on the committee to advocate for meaningful options and alternatives for young people to have the supports they need to make their way in the world.
  • I’m planning for a summer of fun and advocacy. A family vacation to Toronto AND making my voice heard to legislators to protect Medicaid and other programs that people with disabilities need to live in their communities.


On the Issue of Disability Rights: Healthcare

I have been pretty nervous about plans for repealing and replacing the Affordable Care Act (ACA). Representative Ryan’s plans for the Medicaid Block Grants and Per Capita Caps could have drastic impacts on people with disabilities, like me. To explain this, let me share my story.

Dad holding Justin in hospital bedI had 6 surgeries within one year. I don’t recommend this because it involves a lot of time in hospitals, a lot of pain, and a lot of worry. My deep brain stimulation (DBS) surgeries cost about $100,000 each. The first DBS surgery was followed by a serious staph infection that required the removal of the deep brain stimulation leads going deep into my brain along with the stimulator implanted in my chest. DBS was my hope for getting better control of my cerebral palsy, so I repeated the DBS surgery the next summer. Within that time, I also had several additional minor surgeries.

As a person with a severe physical disability, I also have a lot of expensive specialized equipment.

  • A power wheelchair that costs about $15,000
  • My specialized seating system that goes into the wheelchair that costs about $6,000
  • An augmentative communication device that costs $8,000
  • A Hoyer lift helps my support staff and parents transfer me from the bed to my wheelchair to a toilet chair or shower chair that costs several thousand dollars
  • A toilet and shower chair that costs about $4,000

You cannot begin to imagine how expensive it is to have a severe disability. Even with good private health insurance, the copays for durable medical equipment or for equipment that I need that is not covered by health insurance would be outrageously expensive.

Justin sitting in wheelchair with communication device, mom sitting next to him

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’s 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. Without an adaptive keyboard and joystick mouse, I would not be able to write or use my computer. Have I mentioned a wheelchair accessible van with a lift or ramps to my house? Those are pretty expensive, too.

This is why people with disabilities NEED Medicaid – to help cover the many costs that many people never have to worry about and get the equipment and staffing support we depend on to help us live independent lives.

So, what impact would the proposed cuts to Medicaid or per capita block grants have? For Minnesota alone, over the next ten years, it could result in a $15 BILLION reduction for Medicaid funding. That’s BILLION with a B! Some people would say that’s fantastic, the government needs to cut costs. But, we need to realize that cutting costs doesn’t reduce the very real need and costs that people with disabilities and their families will have. This huge of a cut means that there are three alternatives to deal with the lowered amount of federal funding coming to our state. Our state can:

  1. Narrow who receives Medicaid services
  2. Cut or limit the services that are provided
  3. Cut the reimbursement rates to providers

Any of these options or combination of all three will mean real harm to people like me who depend on Medicaid services and supports to live our lives. It could result in people having to be institutionalized to receive the care they need. After all the progress made over the past several decades in moving towards the right for people with disabilities to live full lives in our communities, the Medicaid Block Grants or Per Capita Caps would be a huge step backwards!

 The Medicaid waiver that I am on provides flexibility to hire support staff that I choose and helps cover extra costs that I have because of my disability. I don’t want to be forced to give it up for going back in time to a system that is filled with isolation and exclusion of people with disabilities. I don’t want to be forced to live where I don’t want to live. I want to live with as much choice and independence as possible. Isn’t this what anyone would want?

Please contact your representatives in Congress and let them know that disability rights are human rights and that we should be strengthening programs such as Medicaid that help people with disabilities lead full lives in their communities instead of ripping them apart.

We must ask ourselves, what kind of world do we want to live in?

originally published April 16th, 2017

Hello 2017, Goodbye 2016

At midnight, my graduation year honestly couldn’t end quickly enough. If you wanted the top five in my year, you’re in luck because it was mostly good. Here are the top five I will cherish.

Justin in graduation gown near podium 4 adults standing and applauding

  • Coming in at number five, graduating high school. I had twelve years of education and the saying that “these are the best years of your life” was not entirely true for me. My favorite year was my freshman year because I had friends at school. Oftentimes, I felt isolated and not very included with other students. Also, it was complicated to figure out how to make learning accessible for me. But, I did it. I graduated and was ready to move on to my future. I have always loved learning and for the most part loved school. I had so many awesome helpers along the way.
  • Number four is the World Series because of the Chicago Cubs. It was my dad’s childhood team so that made my dad and other people proud. If they had won the previous year, this would have made the Back to the Future II fans happy.
  • As number three, advocacy has never been a bigger part of my life until now. Because Republicans have control of our MN House and Senate, I will be advocating however I can for issues impacting me and other people with disabilities in 2017.
  • Coming in at number two, my family has been amazing supporters of me this past year as I try to figure out what I want to do with my life.  Thanks to my friends for your friendship.  And, to the awesome readers of this blog – thank you for taking the time to read about life as I know it.
  • Lastly, I gave one of the graduation speeches at my high school graduation and nailed it. You can see it on my YouTube channel.

Here are some things I’m looking forward to in 2017:

  • I will be taking my first class, US History to 1877, at Century College this spring.
  • I want to go to more concerts this year. I’m starting off with seeing the Lumineers in January.
  • I want to have more opportunities to get out there and be an advocate for disability rights and inclusion. I loved presenting at Closing the Gap last fall and to elementary students. I’m learning so much at Partners in Policymaking and excited to go meet my legislators and share my ideas!
  • I almost had an uneventful, boring medical year last year after my two rough deep brain stimulation surgery years in 2014 and 2015. In 2016, I only had one broken ankle and one weird cyst that had to be surgically removed from my earlobe. So, 2017 – please for the sake of my parents’ well-being, be an uneventful, boring medical year!

Wishing you all peace and hope in the New Year!

Originally published on January 4, 2017