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

Presentation at Closing the Gap 2016

On October 20, 2016, I presented with Jay Wyant and Jennie Delisi from the State of Minnesota’s Office of Accessibility, and my mom. The following is what my mom and I shared with the audience for our presentation, Accessibility and Printed Materials that Prepare Tomorrow’s Workforce.

Smiling Jennie Delisi, Jay Wyant, Kris Schulze and Justin Smith

I am honored to talk to you about my experiences, with accessibility. It has not been easy for me because of some barriers that I experienced myself in school. I am going to talk about some of these barriers and then share how I can be most independent when accessible classroom materials are set up well for me.

My mom, Kris Schulze, has helped me ever since the beginning. She often would do what she could to make my work as accessible as possible and help me prepare to be more independent so that I can go to college and become an author.

Barriers

Along with cerebral palsy, or CP, I also have auditory neuropathy and hearing loss. Even with hearing aids, my hearing can still be like a static-y radio. Let me tell you what happens when closed captioning is not turned on for classroom videos or movies – I cannot hear and sometimes cannot process what is being said. I would have to watch the video or film over again at home with captioning turned on. This means more time spent doing homework that others did not have to do. Captioning can help many students, not just those of us with hearing difficulties. In college and in future jobs, I will also need closed captioning or CART (communication access real-time translation).

Another barrier for me was the move to Google Docs in my school. When I type, I use one finger on an adaptive keyboard and a joystick mouse. I have found that Google requires more mouse movements to do the same thing that I do in Microsoft Word. I can highlight two sentences in Microsoft Word in 20 seconds because I can turn the highlighter mode on in just one click. It is easier to highlight the important parts of whatever topic I’m learning about. Guess how long it takes in Google Docs? Almost twice as long – 38 seconds with five to six extra mouse clicks to highlight the same two sentences. Imagine how that extra time can add up when reading long documents when I get to college.

Another difficulty I faced often, especially in high school, was that I would receive the handouts during class. My paraprofessionals would write answers and I could not read their handwriting. Later when it was scanned, it was inaccessible. I could not use text-to-speech to read the answers back out loud or go in and type in answers of my own very easily. This is the type of work that could be set up for me to do by myself with very little help. Yet, this kind of thing happened so very often to me. This brings me to my next barrier – delivery.

I, if at all possible, need classroom materials ahead of time. It takes me four to five times longer to do the same amount of work as a lot of other students. This means an assignment that takes another student an hour to do may take me four to five hours. If I did not get assignments ahead of time I fell behind the rest of the class. No one wants to be behind.

Over time, this is getting easier because of school learning systems like Schoology. Also, I would have teachers who e-mailed me assignments ahead of time. I had my share of teachers who were not technology brave or organized. It takes me a lot of energy to go through a school day. Three hours of homework after school was difficult. I needed weekends to keep up.

My mom will tell you more about planning and how important it was for me to be able to participate in class in ways that mattered.

Mom’s part of the presentation

Planning ahead and allowing for extra time was crucial for getting a head start on assignments and preparing to participate fully in class. A lot of Justin’s teachers did their best to make this happen and tried to get Justin assignments ahead of time and extended due dates.  Most were on board with reducing the volume of what we’d think of as “busy work.” There were others where we struggled to make it work. By making sure Justin had work ahead of time and knew what was coming, he was better able to balance homework loads from multiple classes. Unfortunately, that didn’t always happen and he would find out about big assignments at the same time as other students.

As Justin mentioned, it takes probably 4-5 times longer for him to complete assignments than the average time it takes most students to complete assignments. That means if a student or teacher expects students to spend about 10 hours on a research paper,that same assignment, could easily take Justin 40-50 hours to complete. His brother now is going through some of the same classes as Justin had as a sophomore and doesn’t spend nearly as much time on homework. I remember Justin spending at least an hour or two a day keeping up with homework for some of those same classes.

For Justin to more actively participate in class, answer questions, or express his ideas – he needs to have quick responses programmed into his device – because otherwise by the time he types out a response, the rest of the class will be 3-4 questions past the one he wanted to respond to.  He needs a heads up a day or two before so he can take the time to program some quick responses or ideas he wants to share into his communication device. For class presentations, we go through a process where Justin does the research and work of preparing the PowerPoint, and then spends additional time telling me what to program into his communication device. That takes time. But, what an impact his voice and his words have, as evidenced through his speech to a 3000 person audience at his high school graduation ceremony last summer.

I think some of the things that educators and his support team may not always be aware of, is what life looks like for the hours beyond the school day. A typical day for Justin starts with 1½ hours getting dressed and eating breakfast. In high school, he took 4 academic courses, an adaptive phy ed course so that he could get out of his chair and stretch mid-day, and a resource hour to work on homework. He would come home from school, get out of his chair for around 30 minutes, and then start in on homework for 2-3 hours. That would take us up to dinnertime. It takes about an hour to feed Justin dinner. He then would have about 30 minutes to do whatever he wanted before it would be time to start getting ready for bed – that takes about another hour. He needs a good 10 hours + hours of sleep a night. On weekends, he would often spend 6-10 more hours doing homework, more if working on longer writing assignments. We often felt pretty out of balance in our household.  Planning was critical in helping make it a bit less chaotic and frantic.

What did a typical homework assignment often look like for Justin, check it out in this quick video: Inaccessibility

Back to Justin

So, this happened over and over and over again. My mom or dad would get home from work, or my personal care attendant would need to help me with homework that was not accessible. Text-to-speech would not work. Sometimes, it was easier to have someone just retype worksheets so that I could use them. I would dictate my answers because of how long it takes me to type.

When course materials are not accessible for me that means, that I am more dependent on others to do things that I could have been able to do on my own. I want to be as independent as possible. I know it may seem difficult to make materials accessible, but Jennie Delisi will tell you ways in which to do this, because accessibility matters!

Jennie Delisi and Jay Wyant, from the State of Minnesota’s Office of Accessibility, presented ways in which to prepare accessible documents as well as why accessibility is needed. Please check their website for finding helpful resources.

Accessibility matters

I want to show you what happens when things work well for me. Thanks toBookshare, I am able to read independently. Let me tell you, I read non-stop! Not just for school, but I read all kinds of literature. Also, teachers who use tests and worksheets that include a mix of multiple choice, short and long answers works well for me.

Because I have a difficult time with hearing, I find additional online resources help me better understand what we’re learning in class. I just got to see John Green at NerdCon: Stories in October. John and Hank Green create Crash Course, an entertaining way to learn about history and other topics. Khan Academy and Crash Course helped me make it through my high school career. You can check my earlier blog post for more resources that were helpful for me and you can check out my speech that I gave at high school graduation. To wrap up, let’s check out what I can do when materials are accessible for me: Accessibility.

Accessibility: What works for me

Hey there – I’m going to tell you about resources that help me do the things I love to do. Just a reminder, I need to use assistive technology to access my world. I use an adaptive keyboard, joystick mouse, a lot of online resources and augmentative communication device, to help me write, read, and communicate.

I have athetoid cerebral palsy (uncontrolled movement that affects every part of my body), auditory neuropathy (my hearing sounds like a static-y radio a lot of the time), and visual tracking difficulties. Uncontrolled movement makes it difficult for me to do what I want to do. I can type slowly with the middle finger on my right hand. I need text that can be enlarged and it’s very helpful when reading to have text highlighted as the computer reads aloud. I can do so much when my technology is set up to work for me. It’s a work in progress though and I keep discovering new ways of doing things.

Here’s what is working best for me right now

Bookshare

Bookshare is an accessible online library service for people with print disabilities offering audio, braille, large font and highlighting as you read along. It has helped me read for years—for school, as well as for recreation. This service is free for students who have visual, physical or severe learning disabilities and unable to use traditional print books. It is, wait for it….awesome!

Justin looking at computer monitor with hand on joystick mouse
Justin using Clevy Keyboard and n-AbLER Joystick while reading book using Bookshare

Clevy Keyboard with key guard, n-ABLER Pro Joystick

This is the assistive technology I use to type and work on my Mac computer. It has helped me for a decade. I use heavy duty Velcro to attach them both to my desk. I use a 27” monitor so that I can enlarge documents and text.  Find out more at Clevy Keyboard and n-ABLER Pro Joystick.

Other Helpful Websites

 Crash Course

Thanks to Crash Course and John Green, I have the best time in the world! The awesome Green brothers, Hank and John, teach Crash Course World History and US History along with many other subjects. Their humorous, informative videos make learning fun! The videos are closed-captioned.

Physics Classroom

Physics was one of the worst classes for me as far as accessibility ever. Over the years, working with math equations (through Advanced Algebra) has been difficult – imagine being unable to write and trying to solve equations. Trying to do this in PDF or Word documents is incredibly difficult. It was also difficult with experiments because of my physical disability that limited me to an observer role. I found the Physics Classroom website in my senior year and it helped me better understand the basic concepts in Physics.  Resources like this allow me to study and learn independently and not have to rely on paraprofessionals or other helpers to help me out.

Originally published in previous blog site on 8/26/16