The Courage to be Different

This month I had the absolute privilege of speaking at Alexian Brothers hospital. My 8th grade social worker thought of me when she was planning this "Victim to Victor" conference. It was one of my best speaking engagements yet. Here is the speech I gave:

I’m different. I have always been the different one, ‘The girl in the wheelchair”, or “The kid who cannot walk or talk.’ I grew up with these phrases surrounding me like flower petals surrounding their beautiful green stem. They were always used and helped create a sense of identity. Let me explain. Since people would call me the girl in the wheelchair, I would always ask myself, how can I be great at being the kid in the wheelchair? That is where courage came in. It was essential that I had courage to be different.

The courage to be different. Almost sounds like a paradox especially in our society. Women are encouraged to be super women, not because they necessarily want to but it is encouraged by society. Men are encouraged to be the best in their places of work, again, this may not be their personal goal, it may be society’s goal for them. Since society can put them in a box, it is easy to encourage them because others have had similar goals. With me, I had the privilege of designing my own goals, and I could define personal expectations, and others would just help me because they saw the courage in me. This has been a tremendous gift from God throughout my life. I’ll give you an example.

In high school, I decided to try out for the speech team. That’s right, the speech team. I will admit this was crazy. The girl who cannot talk tries out for speech team. Frankly, I loved it. I loved that I was crazy and courageous enough to even consider it. My courageousness got me on that speech team for the next three years. I placed at three tournaments. Needless to say, I defied expectations. I’m sure the teachers were talking about me. That was a good thing, because it gave me an identity other than just the girl in the wheelchair. Now, it was the girl in the wheelchair who was on speech team. You see what I did? I had an identity because of my physical appearance and then decided to link that identity to something else. I didn’t realize I was doing this at the time; I just wanted to be involved in high school.

When my involvement with the speech team was a success, I decided to volunteer at Onward House, which is a learning center on the south side of Chicago for underprivileged children. A bunch of high schoolers would take a bus to the city and help kids with their homework. It was a wonderful experience. So, now I was the kid in the wheelchair who was on the speech team and volunteered at Onward House. Pretty good. See what I was naturally doing? I’m creating other identities for myself besides the girl in the wheelchair. With that, the high school staff asked me to participate in the variety show. They saw me as somebody who could effectively contribute to the theater community. I had the courage to seek out more identities than just what my body presented me with.

At graduation, during the principal’s speech he stated that, some students were going to college against insurmountable odds. I did not know who he was talking about. My father explained it to me. He was talking about you. Here’s the thing; my parents never said things like, “you have insurmountable challenges”, or,”you have such a hard life”. It was always,” we will find a way” or, “you can do it”. So, when people identified me as the one with insurmountable odds, I didn’t get it. I have never looked at my disability as a challenge; I just looked at it as something to work with. I continued to have that mentality throughout college.

When I got to college, I was thrilled and filled with hope, excitement, and wonder. When I met someone, I put my best foot forward. I saw myself as independent and capable. I took those two attributes to the extreme. I manage eight to ten personal assistants per semester, went to classes on my own and had about 9 hours to myself each day. I absolutely loved it. Surprisingly, these tasks did not require as much courage as going through sorority recruitment. Let’s back up a bit before I tell you about my journey through sorority recruitment.

Even though high school presented itself with many opportunities and good times, the social aspect was very difficult. My fellow students were so scared to be friends with someone so different. They did not understand. I don’t think they were mean spirited, I think they were afraid of associating themselves with the kid who was different. They didn’t understand how much fun being different could be. So, I got ignored all the time. I remember at senior night which was the party after graduation, I had nobody to spend time with. I ended up calling my parents and going home. I tried so hard to teach them about disabilities and they just never caught on, so I moved on.

During the transition process, I made a very conscientious choice to go to a school where the population of students with disabilities was low. Asking about the reason behind it is a fair question. I was so used to and comfortable with my identity as the girl in the wheelchair that I wanted to hold on to that throughout this incredible change in my life.

When I arrived at orientation at Elmhurst College, it was as if the storm stopped and I found the rainbow. They literally could not wait to get to know me. They wanted to hang out, text me, it was incredible. They understood that there was much more to me than the wheelchair. Everyone wanted to help, it astonished me. I had made some friends but I could see that we were naturally drifting apart. One girl wanted to play sports; the other girl committed herself to a dance team, and so on. Over the summer, I had thought of joining a sorority. So, I signed up for recruitment.

I rushed two sororities. For the purposes of this presentation, I will not share their names because I’m not about pointing fingers. So, I am rushing Alpha Alpha and Beta Beta. The first night goes great. However, the second night I don’t get invited back to Beta Beta. I thought “That’s fine; I’ll just pour my heart and soul into Alpha Alpha”. Unfortunately, they did not want me either. Obviously, I was heartbroken. It was then that I started second guessing everything. I thought Elmhurst College was a mistake. I thought it was high school all over again. My mother really had to push me through that time. As we all know, time helps us heal.

This story has a happy ending. A few months later, a sorority named Phi Mu came to campus. Women from headquarters who had been Phi Mu in other areas of the country wanted to start a chapter on campus. I knew I had to try. My parents were appropriately hesitant and claimed that the sorority world was not ready for me. I knew this was a possibility; however I do not want to live with regrets. I went to the recruitment events and I absolutely loved these women. I have to mention that these women were alumna of Phi Mu so they were a bit older and could see my potential as a member of Phi Mu. Also, the staff at Elmhurst College had gotten to know me and they understood that I could commit to an organization like this. Due to those women believing in me and Phi Mu truly being the right fit, I have been a member of this organization for four years. I won the sisterhood award my first year and recently got rewarded for having one of the top ten highest GPA’s in my chapter. It will be extremely difficult to leave Phi Mu this May, however, I plan on joining an alumni chapter after I graduate. This took so much courage but it worked. I don’t know why people choose to believe and support me, I am humbled by this.

I am not just in a sorority on campus. I have been involved in student government, Catholic Students Association, three honor societies including, Omicron Delta Kappa for leadership, Gamma Sigma Alpha, the Greek academic national honor society, and Lambda Pi Eta, the honor society for communication students. As anyone would tell you, I am at most of the college’s events. I attend everything from academic lectures about LGBT issues to the annual homecoming dance. Let’s go back to me being the girl in the wheelchair. Well, if someone described the girl in the wheelchair, it would be difficult because I do so much. So, I can happily report that to my peers that I am just Hannah. This is a wonderful feeling and a great accomplishment in an abstract way. Most, if not all people are known by their names, all my life it’s been split in the middle, fifty fifty, I was fighting a battle with the human eye, I won. I got people to see with their minds. I created an identity outside of the wheelchair.

I have fought this battle for years. My efforts have paid off in various ways in college but this week I took a leap of faith and it was rewarded. I love Elmhurst College. It is the greatest place to learn and the people of Elmhurst College are absolutely phenomenal. So, I was crazy enough to go into the president’s office and ask for a job. I’m not joking. I’m proud to say that he was enthusiastic about it and informed me that he would make some calls and see what he could do. So, even though I cannot feed myself dinner, I can go in to the president’s office and ask for a job.

I have been discussing my high school and college career throughout this speech. It’s time to get more personal. I need help feeding myself, going to the restroom, brushing my hair, washing my face, and anything that is purely a physical task. I have eight to ten personal care attendants that come in and out while I live independently in a residence hall. They come when I need them which is when I wake-up, have my meals, and go to bed. Before I moved out and lived independently, I had to learn how to direct my care. I learned that at a very special place.

Every summer, I go to a place called Camp Courage. It is a camp for people with disabilities. That was my first experience of directing my personal care, a crucial element to being independent. My parents did not train the counselors like they did with respite workers at home or my one on one assistant at school. The camp counselors did have general training but I was used to my parents training anyone that worked with me. I will admit that I was a little hesitant. I was used to having my own caregiver that was fully trained. Well, ten minutes after my parents left, I had made two new friends and loved my counselors. During the first year, I swam with a counselor in the pool without my parents even being close by. I rode horses with people who barely knew me or my body. It was an exhilarating feeling! I had not experienced anything of this nature without my family. I felt so free. Camp Courage made me truly realize that I could be independent. Today, I have honed the skill of directing my care balancing, courtesy and kindness with authority.

The courage to be different is scary however; it can be a lifelong thrill. Notice how I said, lifelong thrill, not the thrill of a lifetime. In my 21 years, I have chosen to embrace my identity, as different as it may be. I do not want to blend in, I want to stand out. I mean, in every single group picture, people can point me out within two seconds. I will admit when the girl in the wheelchair rolled into Jeanie Walsh’s office, she had some days where she wanted to be normal. Now, I can say that, the woman in the wheelchair wants to stand out in as many ways as possible.

I was presented with flowers and received a standing ovation after I completed my speech. I felt like Miss America!

I cannot wait to do another speech.

Love,

Hannah!

Family Matters

I am walking on the treadmill. Things are going well. My left hand hasn’t decided to fly off the handle yet and my body is pretty relaxed. I’m in a good rhythm which feels great when you have a body that does not always cooperate with your brain. In fact, it rarely cooperates. Good rhythm, good music, feel my heart beat. Dad is enjoying the game while I listen to Glee. After a few minutes, I feel it. My shoe lace comes undone. Dad is all too aware of this as my body stiffens to protect itself. Dad turns the treadmill off and has to go to the side. This makes me nervous because I feel most secure when someone is in back of me. Also, the handle bars on the treadmill position my hands vertically instead of horizontally. I feel more comfortable with horizontal bars because I feel more centered and in control. Dad goes to the side of the treadmill and quickly ties my shoe. My arms are tired from holding on so tight. Dad turns on the treadmill again and I am walking but not with that good rhythm I had three minutes ago. Five minutes later, I’ve reached one tenth of a mile .It is Success for the day. Dad reminds me that he expects me to do it again tomorrow. I already knew that.

My sister Genevieve and I are baking in the kitchen. By baking I mean I watch and she does everything. For twelve years old, she is amazing. I mean, this kid can cook! “Back up, I need to get in the oven” she says! I move. She remarks, “Ugh, I need you to move again”! I move. The third time I need to move Genevieve just grabs my joystick. Her requests are filled with dramatic tones and heavy sighs. To anybody else, this would look like Genevieve is mean when in reality, I enjoy it immensely. The way she treats me is the way that any sisters would treat each other. She calls me out on things most people would be scared to because of my disability. Oftentimes, I think she is the only person who truly treats me like I don’t have a disability. I love my sister for giving me a hard time. It sure keeps me grounded.

David, my brother got his license last week. While this may scare some of you, let me reassure you that he is a good driver. The day after he received his license, he took Genevieve and me to Starbucks which was a kind gesture on his part. After he got in the car, he asked me if we could make the trip longer by going to our high school. I was fine with that. It was only three blocks away and I am the first to understand the pleasure of newfound independence. After we got to the school, David doesn’t turn around. Instead, he decides to go to Baskin Robbins. No. No. No. We barely have Mom and Dad’s trust. Let’s enjoy it! We end up in the Baskin Robbins parking lot. I insist on calling our parents. I hear them say that I had the idea. When did I suggest this? I didn’t get angry, the feeling in the car was too happy. Dad said to go to Starbucks. I’m not surprised. We go to Starbucks and have a great time. Our first driving trip was a success and I can’t wait for the ones to come.

I have referenced this moment in a previous post but my mother knows me so well which I am thankful for. When one of my best friends, Julie was in the hospital, I had a week of stress and sadness. I didn’t know what was causing the incredible emotion. I called my mom crying for essentially no reason. She encouraged me to really think about why I was so emotional. Since I was so sad, I took her advice to heart. If you remember, I ended up going to Desiree and I was able to talk about how sad I was. It is incredible that my mother understands my emotions so well-even over the phone. In that light, she is my best friend.

I have always referred to my family as my rock. They support, love, and guide me through life. I hope I show them that family matters!

XOXO, Hannah!

My Last Christmas at Elmhurst

I received one of the best gifts that Christmas can offer and that is to give back. I gave back to my community in a very unique way. I've talked about this Elmhurst College event before but this year I had a chance to put my heart and talent into Lessons and Carols. Lessons and Carols is a composition of music and readings of the story of Jesus’ birth. I have had the honor of reading from the Bible for this event for the past two years. In June (yes, I really mean six months ago), I e-mailed the Chaplain at Elmhurst and asked to please do a reflection during this service. Chaplain Scott agreed and I was thrilled. And then after a few months, a question loomed over me: what do I say? I thought about this quite a bit. What message was good enough? What did God want me to say to those many, many people including my family, great aunts and uncles, friends, therapists and neighbors from home? This was my family and my Elmhurst College family who are the most important people in the world to me. After much thought, reflection, and prayer, I came up with this.

When I was a little girl growing up, we would drive to the airport and there he would be; my grandfather would be at the airport with his Santa Claus hat on ready to hug me. It is probably the fondest memory of childhood I have. Seeing my grandfather who we called Pops, ceased the anticipation of Christmas time. It was here! I got that warm, fuzzy feeling because I knew everything was OK because it was Christmas. We would bake cookies with Nana, and Pops would act like he was not interested but twenty minutes later he somehow became the king of the kitchen. Pops died in 2006 right before Thanksgiving. His untimely death caused for a very difficult Christmas. I didn’t feel that rush of goodness throughout my body despite my best efforts. The man, who had caused the anticipation of Christmas to end, was now with Christ in heaven. It was not fair to me or my family. The next Christmas, 2007 was better but certainly still melancholy. I did not have that rush of goodness like I did when Pops was with us.

In 2008, I saw that this event lessons and carols was happening and I decided to go. After I walked out of this very chapel, I got that rush of goodness back. It felt like a part of me that was missing for those two years had finally returned. I got that warm, fuzzy feeling back instead of feeling chilled like I had been feeling for the past two Christmases. Many of you know me well enough to know that when I like something, I get involved. I have been a reader for this service for the past two years and have the honor of reflecting with you today which I thank Reverend Scott and Chaplain Kevin for. This service brought the anticipation of advent back. This is a priceless feeling. We wait for so much in life. Whether it is for a loved one to get well, for soldiers to return home, or for a sign that the season of advent has begun, God makes it worth the wait, and He tends to have a discreet way of healing your heart. He led me to a service that filled my heart with what could only be known as the Christmas spirit. Needless to say, I still very much miss Pops especially at Christmas, but since I know exactly what I wait for each year, the waiting is not that hard and I don’t worry about feeling numb, because when each and every one of you light your candles at the end of mass it will fill my heart with joy, and I cannot thank you enough for that. God bless.

This is my last Christmas at Elmhurst so this was the beginning of bittersweet moments. I'm glad I had the opportunity to thank Elmhurst for four wonderful Christmases.

I hope you’re filled with the Christmas spirit like I am. I've been listening to Christmas music since Thanksgiving dinner ended and haven't stopped. I'm hoping that my family can make it to the church in Elmhurst that I got confirmed in and to see my precious godson on New Years. I wish you the merriest of Christmases, happiest of Hanukkahs, and a joyful Kwanzaa! And, of course a happy New Year!

Spread Some Joy,
Hannah!

P.S. Only 5-6 more posts of Hannah's College Adventures left...it is unbelievable!

Back to Basics

Readers, I have shared intricate stories to you about my life. I know for some of you the way I do things is still a little foggy. Frankly, if you feel that way, I don't blame you. I want to focus on how I communicate this month so you can understand my daily life better. Recently, I sat down with future speech therapists at Northwestern University and answered their questions about what using a DynaVox feels like. The students had some good questions.

The first question was how do you keep people engaged while you prepare your messages?

This is an interesting question only because I don’t really have to keep people engaged. In some circumstances, I do let people do other things while I type which makes it less formal and awkward. I find that this doesn’t take away from the conversation or make me feel bad. In general, my family and friends know if they are going to talk to me whether in the coffee line or a serious conversation, they’re going to have to wait and have patience. Needless to say, I need patient and understanding people in my life.

The second question from the students was what do you do if someone ignores you or acts like they don't think you understand what's going on?

If someone ignores me it’s usually not on purpose. My assistant gets their attention and we have that conversation I want to have. If someone were to ignore me on purpose, well, they are just not going to be in my life and I probably wouldn’t think of the person again. Now, if my friend is running late for class and doesn’t stop to talk, it’s different; a conversation takes a good five minutes with me, it is OK. Also, if someone treats me like I don’t understand what’s going on; that is probably one of the most infuriating things I endure due to my disability. If the person has to be in my life for example, a professor, I will have several conversations with that person to get my point across. I know people such as my caregivers will help me with that person. If it is not a person I absolutely need in my life, I get away from them as fast as I can without being rude. I am a lady but they really don’t belong in my life, I have so many people that love me unconditionally and they deserve my energy, not the other way around. Although I have many loving people in my world, I always have room for more.

The third question was do you have any tricks you learned to put new people at ease?

The one trick that came to mind first is that if they seem nervous, I let them look at my screen. It's very funny because I can totally predict reactions. I always get, "look at that", and "that is so cool", or "technology is amazing", and my personal favorite, "your screen is pink". Those reactions do help break the ice. Sometimes, with kids it’s helpful to let them type in their name and understand what I have to do to speak. I also encourage other users to have empathy for the other person. They probably have never seen a device before, give them time to adjust.

I ended the Q&A on this note:

Honestly, my advice to users starting out would be to be patient. It can be frustrating and time consuming. I love being witty and sometimes my witty comments won’t make sense two minutes later which is frustrating but I still am going to be witty because it shows who I am as a person. Even though my professors understand that my comments take a while, and I’ll end up saying something that is not relevant to the conversation anymore, that is not a feeling I like. On the flip side, people have embraced how I communicate. I meet with a chaplain every week and we have grown close. So, one day he pointed out that every time I say, "it sucks", I giggle before I press the message button. Now, it is a cute thing I do. So, you can see it either way but I find that my habits using the DynaVox show people my personality. Essentially, it gives you freedom and lets other human beings understand just how crucial communication is, that is really a treat at the end of the day.

I did have my DynaVox break yesterday and I was immensely frustrated. It felt like someone put duct tape over my mouth. It was only for about 18 hours. Thankfully, my therapy clinic has an assistive technology department and they were able to get my voice back.

I hope you had a wonderful Thanksgiving and are welcoming the holiday season with warm hearts.

Love,
Hannah!

P.S. I am relieved and joyous that my friend Julie is home. She is still very much on the mend. Unfortunately, she cannot come back to school until the fall of 2012 which saddens me but when she does come back; she will be ready to take over the school in her own way!