Hello, ITKAN!

I am so excited about an opportunity that God brought to my life. Back in November, I was under the impression that I had a job interview with Feeding America. The woman who I thought was interviewing me was named Kathy. She was meeting me at MarianJoy Hospital which is a home away from home for me. MarianJoy gave me a scholarship every year in college. Ability Links has an office at MarianJoy and that office contacted me about the opportunity at Feeding America. I couldn't say no to using my skills to help people who are hungry. This was something God used to get me to meet Kathy.

I show up at MarianJoy ready to be interviewed by someone from Feeding America thinking they must be really disability friendly to meet me at MarianJoy. Well, it wasn't Feeding America. This was a woman who worked with Feeding America and screened people with disabilities for positions at different companies including Feeding America. Kathy was also on the board of Information Technology Knowledge and Abilities Network otherwise known as ITKAN.

I eventually figured out what this meeting was. Kathy determined I was more than qualified to blog for Feeding America. We talked about Feeding America for about five minutes and then she talked about ITKAN and what I wanted for my career. I told her about how I wanted to speak professionally more than I do now. She said that ITKAN had an opening for a speaker in January. I jumped on the opportunity!  Kathy could clearly see my potential.  

This month, I spoke to the small group about assistive technology and my budding career. Here's how they advertised it on the ITKAN website: 

Hannah Thompson: A Young Professional Chronicles Her Professional Journey and the Effective Integration of Assistive Technology to Forge a Career:

At the next members meeting ITKAN welcomes Hannah Thompson to discuss the use of assistive technology to support a full life and career. Hannah has Cerebral Palsy and a movement disorder called Dystonia. The Cerebral Palsy affects her balance and her ability to walk and speak. The dystonia is a neurological movement disorder that causes involuntary movements in all of her extremities. She utilizes various assistive technology to improve her productivity and assure her success. She uses a DynaVox to communicate daily, and it has also played a critical role in support of her motivational speaking career. With the use of Intellikeys, Hannah accesses her laptop commands efficiently. Along with these critical tools, Hannah uses software such as WordQ and Kurzweil to assist her in succeeding in college and now in her career.
Here's an excerpt from my speech: 

"I truly believe I have only scratched the surface when it comes to my career. I want to write a book, I have a blog that I write in monthly, why not a book? If I could, I would speak to audiences every single day. I have so much to do! A career like the one I want demands a certain level of independence. I love my independence, it’s a huge part of who I am, everyone in my community identifies me with that word and it’s an absolute thrill. I frequent Starbucks all too much so much so that the baristas have adapted to putting my drink in my cup holder and scanning my phone to pay for my drink. My independence is what I am most proud of when it comes to how I choose my life. I attended college, I was on the speech team in high school, I was on the FCC’s Disability Advisory Committee, I’m incredibly humbled and proud to have those achievements but maintaining my daily independence is the hardest because I have to do it every single day. From managing my care givers to making sure I go to physical therapy twice a week, it’s a constant job. I wouldn’t trade it for the world. I get to make my mark on the world living this way. I find that humbling and incredible. Nothing is better than the life I live."

The organization is full of people with varying disabilities who are actively pursuing a career in IT. Many of the members have the same struggles as me. It's nice to hear success stories of all kinds and the support is naturally woven into the meetings. Kathy also had me meet Mary who’s a website designer and she is working on my website. Clearly, a bunch of opportunities lie ahead for me with this organization. One of the audience members was a employee at Microsoft. He asked me to be a guest blogger on the Microsoft Chicago Blog in March. I am thrilled and can’t wait! 

To learn more about ITKAN, please go to https://itkan.wordpress.com/

I'm glad God wrapped ITKAN up in a Feeding America interview. It got me to where I should be. After I became familiar with the organization, I got the email that the FCC Disability Advisory Committee rejected my application for their second term. I was shocked and heartbroken. I didn't tell many people because I thought the blog was a better way to tell everyone. 

I'm excited about the future of my career and what opportunities ITKAN will bring. 

Happy 2017,
Hannah!

This Girl Loves Elmhurst

I sent this in to The Elmhurst Independent. This letter to the editor got published. I'm flattered! 

 

Dear Beloved Elmhurst,

It has been a joy living here these past six months. My name is Hannah Thompson and you have seen me zooming around in my wheelchair around this grand town.

I frequent Starbucks and you all are patient with me as I type out my order on my communication device; I thank you for your patience. If you seen me struggling with a book at the library and have taken five seconds of your day to help me with those slippery little things, thank you. If you have been on the prairie path and have taken a second to see if I need a little help, thank you. If you are a young Eucharistic minister who do not blink an eye at having to place the Eucharist in my mouth, thank you. If you work at the bank and help me cash my paychecks on my own, thank you. If you are a local business owner that knows my name and takes the time to get to know me, thank you. If you are one of the crossing guards, thank you a million times over. If you are the Walgreens pharmacist or employee who makes sure my bag on my wheelchair is secure on my wheelchair, thank you. If you are a parent that has let your kid ask me a question about my disability, thank you because we have to teach them that people living with disabilities is what the norm should be .

I feel a genuine sense of acceptance in this community. While this country is divided, the kindness of this community gives me an incredible amount of hope. I love that we greet each other on the sidewalk, I love that our kids are respectful, I love how we serve the less fortunate, and I love that you have accepted me as your own.

During this season of joy and goodwill, I wanted to pause and express gratitude for seeing me and my obsession with Starbucks instead of my disability. Isn't it more joyful that way? Merry Christmas and I look forward to seeing what 2017 brings to our town! 

Readers, thank you for always encouraging me throughout the year. Your love and genuine interest in my life is constantly humbling. Thank you for reading; I truly can't believe your loyalty! 

Happy 2017,
Hannah!

No Matter What, be Kind!

As we grow familiar with the idea of an unprecedented presidency, I have grappled with how divisive our precious country is. It has saddened my heart at times and I have shed many tears.

However, the ability to be kind is not in jeopardy. No matter who sits in the Oval Office, we all have the ability to be kind. Here are some uplifting stories that have more influence on me than any political leader/ever has or will.

I was trying to pay at Starbucks and things were taking a long time. The baristas and I were ironing out our routine at this point. In a very kind way, the man behind me offered to pay for me. The barista gave him a warm smile and said, "She comes in here every day and I know she has more than enough to pay for her coffee". It meant the world to me that the barista had that sense of empathy to know I don't need my coffee paid for me. My favorite part was that everyone was kind to each other during the interaction.

When I go to the library, I have to lift the book up on the counter to check it out. This can go very smoothly or terribly. There's never an in between. The librarians will either have another librarian be my hands or the librarian helping me will come around the desk and pick up my book if it falls. In addition to this, the librarians also don't ask for my library card; they look me up on the computer instead. This small act of understanding makes everything so much easier.

At Immaculate Conception parish, the ushers know that I like to go in the communion line like everybody else. It's nice that nobody makes a big deal about it. One time, a very young boy was ministering communion. I'm going to guess he was around the age of eight. I'm thinking my situation is probably overwhelming and scary for him. He literally did not blink and he just fed me communion. It was nothing to him. It was such a good reminder that kids are the best examples of going with the flow.
I hope I warmed your heart during these cold times in our country. I love you all so much.

I'm off to D.C. in a few days for my FCC meeting.

Just Doing My Thing,
Hannah! 

Living My Dream

This month, I was honored to speak at a fundraiser for Dystonia. Here’s my speech from a few nights ago.

How do I say this? I was not a huge fan of advocating for dystonia until this year. See, I thought a cure was out of reach and I was really fearful to have hope. I did not want to put myself at risk for heart break. Dystonia had always been a dark spot in my life, it was the first reason why I took a medication for something related to my disability, it was the cause of many difficult mornings because I couldn’t put my shoes on, and then I would consequently spill during breakfast, or after a shower my left foot would be so turned in that I could not walk the ten steps to my bed and my parents would have to carry me. When I put everything I associated with dystonia up until October of last year, dystonia was the worst part of my life.

Then, through a connection of my mother’s friend, Barb. Thank you for what you have done, Barb. I got to tell my story to Congressman Bob Dold. My mother knows me well enough to know I could not say no to me telling my story to an important person. Well Mom, if that was your plan, it worked. The day we met with the Congressman a light bulb went off. Oprah would call it an “ah ha” moment. I figured out if people in power knew my story, it would have an impact on the speed for a cure for dystonia. That day I also met the fairy godmother of the Dystonia Medical Research Foundation, Janet. She seemed to really get me. I also knew that people cared. I wanted to help the Foundation. I e mailed Janet about an internship a few times. OK, I emailed a lot. I finally understood this community, we were not dreaming and wishing, the cure is around the corner, we have a very hard turn to make, we have to pull the steering wheel until it has no choice but to go in our direction.

I’m still scared to hope. It takes courage. Courage I did not have until I realized how incredible this community is. I’m so thankful for the support you all have shown me. I am going to end with a quote from the hit TV show, Glee. “It takes a lot of courage to see the world not as it is, but as it should be.” That is what we are doing tonight. We are changing the world for people who have dystonia and I think that is courageous. Thank you, and let’s have a wonderful night.

Readers, I hope you enjoyed my speech.

In other news, I went to southern Illinois to speak at a conference. I speak at Elmhurst College tomorrow which is always a great time.  So, I’ve been busy living my dream! I wouldn’t change a thing.

Love,

Hannah!

An Independent Evening

It seems as if the only positive attribute associated with fall is pumpkin spice lattes or PSLs. While I choose to indulge in salted caramel mochas or SCMs, I also look forward to Elmhurst College's homecoming events. They start mid September and I enjoy them immensely. In my other apartment, I could not just walk to an event; someone had to drive me which led me to not to participate as much. It's a whole lot different this year. 

The first event was an opportunity to meet the new president of Elmhurst College. It was at a local sports bar literally across the street from my condo. I would have been the lamest person if I didn't go. Sporting a blue and white blouse and white jeans, I started the one minute walk over to the bar leaving my assistant behind. Leaving my assistant behind felt good. 

 
When I got there, there was a stair. This was so annoying but everybody did their best. The restaurant staff had a makeshift ramp as in a flat piece of wood. It worked and I was on the patio with a slew of fellow alumni. Nobody from my graduating class was there so I didn't suspect I would be there for long. I sat next to a guy who did something with machinery. He really lacked conversation skills. I understand talking to someone who uses a communication device is intimidating but just not that difficult. And honestly, I was way out of his league. I hope the ladder was most intimidating for him.

 
I spent about an hour there. I did get to meet the president of the College but I did meet his wife who I found to be lovely. I had a great time but an hour was plenty of time. After I managed my way down the makeshift ramp, I decided I didn't want to go home. I found myself going to Starbucks for the pink drink. The pink drink is a mix of Starbucks' Strawberry Acai Refresher and coconut milk, topped off with a scoop of strawberries. Needless to say, the baristas totally understand when I type out "the pink drink" instead of the description above. I get my pink drink and am still not ready to go home. 

 
The Jewel is all too close and I remember how much I love Reeses! I swear, my wheelchair has a mind of its own It just took me to Jewel where Reeses was buy 2 get 2 free. I'm sucked in and I stand in line. I try to contain my laughter as the woman in front of me is just buying veggies and here I am with four Reeses. I was hoping the woman in back of me would have several wine bottles but no such luck. The cashier has already been through checking me out prior to this so she knew the protocol. 

 
Leaving Jewel, I knew I had to go home because it was getting dark. Walking home, I was filled with glee. I had gone to an event and two stores with complete independence. What could be better than an independent everything?  

Love,

Hannah!

Painting the Town Pink!

Last August, I lost my best friend, Julie to Cystic Fibrosis. I wrote a poem about feeling her presence.

You left town a year ago

Don’t worry, I’m painting it pink!

Your light shines in me when I go to work and try to make the world a better place

I feel your light and know to shine it for you

You left town a year ago

Don’t worry, I’m painting it pink

Your light shines every time I’m behind a microphone

Your light shines in me and I try to embrace the audience like you embraced everyone you met

I feel your light and try to treat others as you did

You left town a year ago

Don’t worry, I’m painting it pink

Your light shines when I am with family

I feel your light when I spend time with my brother and sister  

You left town a year ago

We’re still painting the town pink

Your light is blinding when I really look around

I feel your light; it’s everywhere!

It makes us all smile.

I miss my best friend more than any dictionary could have the words to describe. However, I don't remember her in a sad way; it's more fond memories. 

Anyway...

I've been going to Starbucks independently. I've gone to this particular Starbucks for about three years so the baristas know me. When I first made the venture independently, I will admit to being nervous. I had white pants on and it was just before a formal event. I had just gotten a cup holder that fit perfectly on my wheelchair which is hard to find and I wanted to try it out! I took the way to Starbucks that avoids the railroad tracks and people are nice and will definitely open doors. After realizing I had come independently, the baristas didn't think anything of it. It took teamwork on their part but we did it! I did not spill on my white pants. 

After the initial trip, I made some adjustments. I use the Starbucks app to pay. The barista can scan the bar code on my phone instead of going through my purse. I have my order ready to go in my DynaVox; I do everything in my power to make it easy on them. I think that if people with disabilities want to be independent, we have to be responsible and help the community understand our needs. They should feel like they know we were helped in the way that we wanted. I know I've walked away from situations where I didn't fully walk people through what I expected and they just look so confused and concerned as if they were thinking, did I do OK? 

I did cash my paycheck independently too. I want to stress that I know the staff at the bank very well. They know me by name and I know them just as well. I have a pink stamp and they knew where I kept it. They did everything right by showing me every single thing that they did with my checks that I wanted to cash. I did have the checks in one envelope so I could give the teller everything at once which is making her life easy. There was an element of teamwork because the bank was empty and the other tellers could help make it go smoothly. This girl is cashing her paychecks independently. Woo hoo!

I am so darn happy! This really is my town and I am painting it pink!

 P.S. I apologize for the link to my fundraising page not working last month. Here it is again: 

https://grouprev.com/Donate2OTR-hannah-thompson