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

Faith in the Midst of Bewilderment

My faith in Deep Brain Stimulation has never left me in the midst of bewilderment. Last year, I spoke about my dreams for my upcoming deep brain stimulation or DBS surgery and my hope for it to be my home run in kicking kernicterus on its butt. I live with kernicterus, the brain damage caused by newborn jaundice that caused my cerebral palsy. I also said that even if DBS didn’t work, that I’d be fine, because of my outlook on life. I’m pretty positive and see the world as a glass half full not half empty.

Justin laying in hospital bed, brother sitting in chair with game controller

Well, DBS did not work. Last spring, I went through 2 long surgeries and 3 weeks after the second one discovered that I had a staph infection. By August, the deep brain stimulation wires to my damaged basal ganglia deep in my brain and stimulator in my chest were gone because my war with the staph bug couldn’t be won.

What is hard for me, is that it had been working. People could understand my voice. I could make a peace sign with my fingers. I could type better on my computer. And then it was gone. I felt like crap. It’s exhausting when life doesn’t work how you had dreamed. How do you hold onto faith and hope in the midst of bewilderment?

 

I believe that hope lives in me because I have faith in myself and in other people and in medical advances that may make my life a little easier someday. Last year, DBS failed me. I am not going to give up though. I’m going to try it again, because it was working.

When you hope, you can do hard things like fight an infection and stuff. I have faith that I can stay strong no matter what happens, and that for those moments when I need extra support and love to get me through the tough times, that my friends and family are there to hold me up. Because of that, I can do amazing, scary things like go through surgery that is risky but could also hold a lot of hope for me.

You may think I’m crazy, but we have set the wheels in motion for going through it again this summer – two more long surgeries and the hope of a little more control over my uncontrollable movement. The doctors are going to do everything they can to prevent infection but there are no guarantees. There never are. A life with guarantees would be boring. I hope for a better result this time. I have faith that you will all be there to hold me, and my family in love even in the midst of more bewilderment and uncertainty.

So, what do you take away from this? That some people deal with a lot of heavy stuff? Tears? Inspiration? Pity or feeling sorry for me? I don’t want pity or people feeling sorry for me – I truly am fine and disability is just part of normal – but it can be tough and that’s why I share my true story. What I want for you to take away is that maybe my story can help you deal with the heavy stuff you may be facing – that you’ll be able to hold onto your own faith in the midst of your own bewilderment. This is all that any of us can try to do.

Thank you and hold onto your brave!

Originally presented in February 2015 at WBUUC Youth Service, posted June 29th, 2016

Looking Towards the Future High School Graduation Speech

Justin in graduation gown near podium 4 adults standing and applauding

The video that my dad took is on my YouTube channel.

Imagine a small group of 10th graders sitting around a computer in my bedroom. There’s laughter, discussion, sharing ideas, and lots of cookies. I had my section about Civil Rights and sports in the 1960s ready to be added to the lengthy PowerPoint. Another student was creating the jeopardy game. A young woman was writing up the plan for our class presentation. Another two guys were figuring out what we would wear. Remember the American History decades project? For me, this was an experience I will always remember because we all contributed to the project in meaningful ways to get that “A.”  In addition to learning about the 60s, I believe 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.

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 misimagined.” All of us are unique and face difficulties. It can feel lonely in the rest of the world when you have any kind of perceived or real difference. 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. I imagine that there are many of you who have felt the same. We all need to take the time to truly get to know people around us. As we go out into the bigger world, remember to make the time to listen to and include those who may be isolated or alone. Go beyond the simple “Hello, How are you? What’s up?” Because of my experiences with fellow students for the decades project and other friendships in my life, I know you can make such a huge difference in just one person’s life.

As we go through life beyond high school, each of us will face our own challenges. Why do we have struggles and why do some have more than others?  It’s not that easy for me to do what I want to do because I have cerebral palsy. It is as if my muscles all have their own individual brains and none of them are listening to the brain in my head. Imagine that most people cannot understand your voice and that it takes you several minutes to type every sentence that you want to share. It is annoying sometimes when people do not realize that I, along with others with disabilities, have a lot to say and need others to take the time to listen.

Disabilities or any other challenges that you’re going through do not define who you are. I didn’t choose to have my disability but I do get to choose how I live with it. When you find yourself up against obstacles in your own lives, you are the ones who get to decide how you face those challenges. Most of the time I hold on to hope. I find ways to fight my goofy muscles and try to do what I am able to do. I focus on those things that are meaningful to me such as my love of creative writing or getting lost in a good book.

Can any of us face challenges on our own?  No.  I am lucky because I have an amazing family, helpers and friends. To fight through tough times, we all need to draw on what gives us strength and it is important to ask others for help along the way. But don’t wait for someone to ask you for help. Reaching out in simple ways can make an amazing difference to a person who is struggling with whatever life brings.

We leave here tonight, each of us with a unique universe to explore. Open your minds to new ideas, new people, and new experiences. There will be challenges along the way, but we need to choose the infinite possibilities to create a more inclusive society where we see value and dignity in all people.

Originally written for and presented at my High School Graduation in June 2016

Being Human: Living with a Disability

Why do I have a disability? Why me? Why does anybody have a disability? These are questions that anybody might ask. Why do we have struggles and challenges? And why do some have more than others? It’s not that easy for me to do what I want to do because I have a condition called kernicterus. 

What is kernicterus? I can tell you. When I was hardly a day old, I got sick with newborn jaundice. Did you know that severe newborn jaundice can cause brain damage called kernicterus? For me that means athetoid cerebral palsy or CP, auditory neuropathy, which means my hearing is like a static-y radio, visual tracking difficulties and so much more. And did you know, it could have easily been prevented with a $1 blood test and treatment? What happened to me was an easily preventable medical mistake.

So, what is it like to live my life? Sometimes it’s really hard and I have down days. It’s as if my muscles all have their own individual brains and none of them are listening to the brain in my head. Think about having to rely on someone else to give you a drink of water or feed you or arriving at restaurants where you simply can’t go in because there are stairs. A 3” step or curb is a mountain that can’t be climbed when using a power wheelchair. Imagine that most people cannot understand your voice and that it takes you one or two minutes to type every sentence that you want to share. It is annoying sometimes when people don’t realize that I have a lot to say and need them to take the time to listen. Part of the reason that I write these kinds of essays is because I have the time to make my voice heard.

I didn’t get to choose whether or not to have a disability, but I do get to choose how I live with a disability. A lot of the time, I find a way to fight my goofy muscles and try to do what I am able to do. I work hard to live life without limits. I love to learn, especially about creative writing, literature, and history. I love school and I love to read. Being an author means the world to me because writing calms my soul.

Justin is boy in wheelchair with his younger brotherCan I fight the difficulties on my own? Can anyone face challenges on their own? No. I am lucky because I have amazing parents, helpers and friends. I have a team of doctors and therapists. All of them try to figure out what will help me do the things I want to do. I also have a brother who loves me and is my best friend. Grandparents, aunts, uncles, and cousins are part of my team. People, even strangers, hold me in their hearts. I find courage in knowing that people believe in me and support me.

What is my dream and what is in my future? I will do what I want to do and live where I want to live. Minnesota is failing countless people with disabilities by providing little support other than in sheltered workshops and group homes. (Serres) Do I want to be forced to work and live where I don’t want to? Nobody does. I’m going to go to college and figure out how to live where and with whom I want to live. Even though the employment rate for people with disabilities working full time is only about 26% in Minnesota, I will do what it takes to work in a meaningful job where I will give back to society. (Mourssi)

I am Justin Smith and I am determined and want to live my life without limits. I am a human being like any other. We all have challenges and struggles we face. I choose the possibilities not the disability.

Sources

Mourssi, Mohamed. “Department of Employment and Economic Development.” Disability Employment in Minnesota. Minnesota Department of Employment and Economic Development, Oct. 2013. Web. 03 Jan. 2016.

Serres, Chris, and Glenn Howatt. “Sheltered: How Minnesota Is failing the Disabled.” Star Tribune. Star Tribune, 8 Nov. 2015. Web. 18 Nov. 2015.

Originally published on my previous blog site on 4/14/16