Tax Cuts and Jobs Act

Just say no

I have fought and will continue to stand against every single attack to cut Medicaid because of these three words - freedom to choose. People with disabilities should have the freedom to choose how to live their lives and I can only do that with the help of Medicaid. 

The Medicaid funding I receive helps me live in my home, hire support staff, and pay medical costs not covered by my family’s private insurance. This support matters! It has made it possible for my parents to work. They have not been bankrupted by high medical costs. I have received medical treatment, equipment and care that helps me be more independent and make an impact on the world.

There is so much in this tax bill that could harm the most vulnerable in our communities. If this tax plan goes through and has the negative impacts to Medicaid that are expected, I am terrified  that many of us with disabilities who need Medicaid to live in our communities will lose our freedom to choose how to live our lives because the services we depend on will be severely cut back.

Call your senators and tell them to vote NO to this tax bill!

Here is the Arc statement on the Tax Cuts and Jobs Act

“We vehemently oppose this bill and the threats it poses to people with intellectual and developmental disabilities”

Washington, DC – The Arc released the following statement in response to the House of Representatives passing theTax Cuts and Jobs Act on 11/16/2017:

“The Arc has a longstanding position that tax policy should raise sufficient revenues to finance programs that support people with disabilities to live and work in the community. The Tax Cuts and Jobs Act does the opposite. By reducing revenue by at least $1.5 trillion, the bill increases the pressure to turn next to cut Medicaid and other programs that are critical to the lives of people with intellectual and developmental disabilities.

“We vehemently oppose this bill and the threats it poses to people with intellectual and developmental disabilities. We now turn our attention to the Senate, which is considering legislation that will also increase the deficit and repeal a portion of the Affordable Care Act that would undermine the entire law. The disability community has fought against threats to vital programs and won several times this year, and we are prepared to do it again,” said Peter Berns, CEO of The Arc.

Turtles All the Way Down

Before I start, for those of you who have not read the book I am going to talk about, this doesn't have any spoilers for Turtles All the Way Down by John Green. The book covers a very serious issue regarding teens, mental health. If you or a loved one is dealing with a mental illness, let the person know there are people who love them. The second thing is get help. John Green reinforced this on his recent book tour, too. It was an awesome book tour and I was lucky to see him and his brother, Hank, in Minnesota! 

I think  Turtles All The Way Down, is, by far, one of the best teen books with a character with a mental illness. The narrator, Aza Holmes, starts off by stating, ''AT THE TIME I FIRST REALIZED I might be fictional, my weekdays were spent at a publicly funded institution on the north side of Indianapolis called White River High School, where I was required to eat lunch at a particular time—between 12:37 P.M. and 1:14 P.M.—by forces so much larger than myself that I couldn’t even begin to identify them. If those forces had given me a different lunch period, or if the tablemates who helped author my fate had chosen a different topic of conversation that September day, I would’ve met a different end—or at least a different middle. But I was beginning to learn that your life is a story told about you, not one that you tell.'' John Green has a way of understanding the teenage mindset that is so powerful.  

Aza is a young woman who has Obsessive Compulsive Disorder and a callus on her middle finger from continuing to crack open the cut because she goes into these thought spirals, leaving her to think that she has a microbial infection, C-Diff. Let us take Aza's words when she goes into her thought spiral, particularly when she makes out with Davis, a billionaire's son whose dad goes missing. ''I felt his hand on my shoulder. I spun around and squirmed away from him. My breath running away from me. Dots in my vision. You’re fine he’s not even the first boy you’ve kissed eighty million organisms in me forever calm down permanently altering the microbiome this is not rational you need to do something please there is a fix here please get to a bathroom.'' the thoughts are obsessive and downright compulsive, taking a hold of her and causing the stoppage of making out.  

Aza goes on to talk about the ''invasives'' with Dr. Singh, a psychiatrist who quotes a lot of people. For example, when Aza quotes Descartes' ''I think therefore I am,'' ''No, not really. A fuller formation of Descartes’s philosophy would be Dubito, ergo cogito, ergo sum. ‘I doubt, therefore I think, therefore I am.’ Descartes wanted to know if you could really know that anything was real, but he believed his ability to doubt reality proved that, while it might not be real, he was. You are as real as anyone, and your doubts make you more real, not less.” Descartes' philosophy plays a role in the book that makes the book so precious and powerful.  

John Green opens up about him having OCD in this sometimes dark and haunting novel and I think that experience matters in books. At the end of the novel, John Green writes, ''I, a singular proper noun, would go on, if always in a conditional tense. But you don’t know any of that yet. We squeeze his hand. He squeezes back. You stare up at the same sky together, and after a while he says, I have to go, and you say, Good-bye, and he says, Good-bye, Aza, and no one ever says good-bye unless they want to see you again.''  

My recommendation - read this book right away and don't forget to be awesome! #DFTBA

See my post about tax cuts next week. Goodbye.  

Inclusion in Action

I am honored to be featured in Microsoft’s Inclusion in Action video series because it shows how I use technology to share my voice with the world and just how important technology is for me every single day of my life. The video of me is being released on Monday, 10/30/17 at 11:00 CST. If you found my blog because of the Inclusion in Action video series, thank you for finding me and welcome to my blog.

''What people don't understand is that technology is my way to communicate with the world," I say in the video. Assistive technologies like an adaptive keyboard, joystick mouse, word prediction software and captioning all help me use the computer. I use my communication device to help me speak because people have a hard time understanding my speaking voice. I move around thanks to my power chair. I even have tech implanted in my body - my deep brain stimulator helps calm my movement and makes it a little easier to do what I want to do.

Since starting college, I have some new favorite technologies. As you saw in the Microsoft video, Immersive Reader in Word and OneNote Online has made it so much easier for me to read documents. I wish I would have had it years ago because it would have made high school curriculum way more accessible for me. I have visual tracking difficulties and with Immersive Reader I can set the text size, spacing, and it highlights the words as they’re read.

I don’t Skype with people often, but Microsoft Translator also was very helpful for me in the calls with Microsoft leading up to the video. I would see the real-time captioning while we were in the Skype call. I have auditory neuropathy which makes hearing difficult so captioning is very important for me to better understand what is being said. Thank you, Microsoft!

For reading books, Bookshare is my go to favorite. Have you read Turtles All the Way Down by John Green yet? If you didn’t know, I am a HUGE John Green fan. It was available on Bookshare.org the day it was released. This is a great resource for those with disabilities that make reading print books difficult or impossible. Thank you, Bookshare!

I also rediscovered WordQ at Closing the Gap last year. I use it ALL the time. It has sped up my writing process a lot. Imagine if you can type with only one finger of one hand, and you have uncontrolled movement jerking your arm away often and randomly. As I've written in the past, athetoid cerebral palsy is like every muscle in your body having its own individual brain, none of which listen to your actual brain. As you can imagine, typing takes me a long time. WordQ is simply awesome at cutting down the number of keystrokes to get my words out!

Here are some of my earlier blogposts that you may want to read if you’re interested in finding out more about life as I know it and to inspire you to keep stretching the boundaries of what is possible!

• Being Human - My mom refers to this speech during the video, this was the first time I ever shared my writing in public at our youth group’s annual church service and then submitted to a local writing contest. 
• FrequentlyAsked and Unasked Questions – This post tells more about me, kernicterus, and about my medical stuff.
• Accessibility:What works for me – This is a post that I wrote before my presentation at Closing the Gap in 2016.
• Presentation at Closing the Gap 2016 – This also shows why technology is so important for me.
• Contact me - if you’re interested in following me on social media, contacting me, finding up-to-date info on presentations, writing, etc.  

p.s. I did also get three hard cover autographed Turtles All the Way Down books for family and friends.

Advocacy and Action

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

On 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 1^st 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 10^th 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.