To Err is Human

I watched a documentary, To Err is Human, with my mom and dad last weekend. Like Cal Sheridan, who is featured in the film, I also have kernicterus because of a medical error. Did you know that medical errors are the 3rd largest leading cause of death in our country? There are as many as 440,000 preventable deaths every year. Far more than that are living with the long-term impacts or injuries from medical errors. For me, it means severe cerebral palsy, auditory neuropathy, visual tracking difficultiesBlack and white photo of dad holding baby Justin, and some messed up toes. Had my newborn jaundice been tested and treated in time, I may have had a very different life. But, it wasn’t – and I don’t have that different life.

Watch this documentary and find out more about what we can do to improve the medical system so that it’s safer for all of us. We NEED to do this!

Surgery

Speaking of medical stuff, my toes surgery is on April 29th  with a night or two in the hospital. My mom is going to write a guest post after to let everyone know how I’m doing. I’ll have surgery on both big toes with a couple months’ recovery. Hoping for relief from the toe-pocalypse although I also know that surgery and recovery will mean it’s going to get worse before it gets better. Foot xray showing bent big toe

Interrupters

Until then on to crazy fun April starting with Interrupters concert tomorrow night!!! Favorite songs: She’s Kerosene and Got Each Other (featuring Rancid)

We don’t have much but we’ve got each other! 

 

Another typical week

Just a reminder – my typical weeks are why we need to protect Medicaid and make sure we have access to good, affordable healthcare!

Speech therapy on Tuesday. Communication device fell off my chair but fortunately seems to be working just fine. My speech therapist made some brilliant changes so that I can’t accidentally hit the speak bar when selecting a word-prediction choice. And, I can more easily program my own buttons now on my Quick Stuff page. Watch out world!

Also, got my thigh strap contraption repaired while I was speech appointing. It broke last week.

Appointment with my complex movement team doctors on Thursday. Trying some new Deep Brain Stimulation settings. 4.5 volts seemed to be too high and ended up making my movement even weirder so went back to 4.0 volts. In a couple weeks, dad will sneakily without my knowing switch to a 3rd new setting that turns on 2 different leads that are deep in my brain. One of the coolest things, was that my neurologist did a “software update” on my stimulator implanted in my chest and now the stimulator should last for another decade before having to be replaced. We had thought that it would need replacement after 7 years which would have been in about another 4 years. The fewer surgeries the better since I have had issues with staph infections. The grand experiment of Deep Brain Stimulation (DBS) continues.

Friday night was Dead Pool 2 night while charging my DBS. It takes about 1-2 movies a week to charge my DBS.

Upcoming surgery on November 9th to remove my lower braces – and an out-of-whack lower tooth. YAY!!!!!!!

Had an awesome end of the week when I went door-knocking for Ami Wazlawik who is running for MN State House Representative for 38B. She’s awesome! Made my dad come along and help out this time!Back of man and Justin in his wheelchair walking down street

(P.S. I’m actually at my pre-op physical when this is being posted on my blog. The magic of scheduling blog posts on WordPress!)

Adjournment

My first time as a delegate to the State Democratic Farmer Labor (DFL) Convention was definitely exciting and suspenseful! I met some amazing people and loved seeing the political process in action.

Thanks to ABC-6 in Rochester for noticing my blog, reaching out, and then sending a wonderful reporter, Noelle Anderson, to interview me about my experience as a first-time delegate. Here’s the link to the DFL Delegate Strives to Give a Voice to Those Without One report from ABC-6 KAAL-TV. Enjoy!

Justin with reporter Noelle Anderson smiling

(ABC 6 News) — There are 3,000 extra people in Rochester this weekend for the state DFL Convention. Half of those are delegates.

One of those delegates is Justin Smith, a public speaker, blogger and disability rights advocate. He’s only 19 years old, and he’s already become a leader for people with disabilities.

“It is important for me to make my voice heard, and show up and to be an advocate for the change. That’s why I am a delegate,” Justin said. “It’s important that people with disabilities are included in meaningful ways. That includes being involved in the political process.”

Justin lives with Athetoid Cerebral Palsy. He uses a communication device to talk, and that device, as well as his power chair, comes at a cost, which is why he’s advocating for support, to make sure anyone who needs technology and care- gets it.

“He’s able to share his unique perspective on how we can all make this work better. He needs support and full-time staff and health care and special equipment, accessible technology. Technology is key for this kid. It’s his independence,” said Kris Schulze, Justin’s mom.

Kris and Justin smiling

“There have been real threats to medical assistance and health care which mean very real threats to people with disabilities. We need more options for self-determination. I want to live with as much choice and independence as possible. Isn’t that what anyone would want?” Justin explained.

Justin says one in five people in America have a disability and one in four 20 year olds will have a disability before they retire.

“I am terrified that many of us with disabilities who need Medicaid will lose our freedom to choose how to live our lives. This support matters. It helps me make an impact on the world,” Justin said.

This leadership role isn’t new for Justin. Last year he was featured in Microsoft’s Inclusion in Action Video series.

Justin also has his own blog called Justin Smith Writes.

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.

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