Archive for the 'writing' Category



Guest post by DJ Mermaid: A day in my fin

In my meeting with DJ Mermaid this week we talked (among other things) about expressing our honest feelings in our personal stories, and the importance of using strong verbs to express ourselves. DJ Mermaid is a very fast learner, and you’ll see an example of this in today’s post #3. IN her original draft she said she was “in casts,” and I asked for a stronger verb.

by DJ Mermaid

If you stepped into my shoes — or fin — right now you would realize that I am going through a difficult and awkward time in my life. I am imprisoned in casts on both legs from my ankles to my hips (I am wearing casts to put my heel down and make myself straight) and am stuck at home with my mom! (Uggh!)

Yesterday my friends came over and we decorated s'more cupcakes. Loads of fun.

Yesterday my friends came over and we decorated s’more cupcakes. Loads of fun.

Just in case this sounds exciting to you, I am going to show you a day in my fin through words and numbers.

  • Wake up happily!
  • Eat a delicious and healthy breakfast like an over hard egg with a fresh fruit smoothie.
  • Do homework while mom takes little bother to school (I hate this part because I already know the material! It is wayyyyy too easy!)
  • Mommy Math Time! (while standing up) Hate!
  • EXERCISE — Super Girl lifts, toe curling, one arm raising and so on.
  • Standing and watching TV.
  • Eat lunch like mango and a PB&J.
  • More standing exercises, sometimes typing on the computer, sometimes Facetime, reading.
  • More exercises.
  • Mom picks up little bother from school.
  • Tutoring (this is soooooooo boring).
  • Dinner.
  • Facetime with my bff (he knows who he is!).
  • More standing, reading or TV.
  • BED TIME

Here I take a break from my list and I am going to tell you what the top ten best reality TV shows are that I am allowed to watch:

  1. Project Runway
  2. Project Runway: Junior
  3. All- Star Academy
  4. Kid’s Baking Championship
  5. The Profit
  6. Shark Tank
  7. Cake Wars
  8. Cupcake Wars
  9. Guy’s Grocery Games
  10. Chopped

We also like to bake delicious treats. I am inspired by some of the baking TV programs. My favorite is the Brownie (Chocolate Chess) Pie. Basically it is a brownie on the inside with a pie crust outer shell. NOTE: Serve with Dad’s French vanilla ice cream if desired. Another favorite is an apple and pear breakfast crumble. Put your filling of apples and pears together and then create a streusel type of crust top.

I write stories, too. The one I am working on now is called The Old Pioneer Westerner. It is about a girl and her family who, after being split up, work to make a better life for themselves. In 1847 they go from Colorado to their destination of Salem, Oregon. This story captures the heart of the American Dream.

Have you gotten to flap in my fins enough?

Well, that’s the end of my 3rd post!

-DJ Mermaid

 

Reasonable questions: our visit to St. Francis Xavier School last week

I’ve been visiting elementary schools with my Seeing Eye dogs more than 25 years now, so it’d be reasonable to think I’ve heard every single question a kid would dream up when it comes to blindness or guide dogs.

That's us at St. Francis Xavier.

That’s us at St. Francis Xavier. (Photo by Jackie Petrozzi.)

Jackie Petrozzi

But hey, who ever accused kids of being reasonable?

Last Friday afternoon my Seeing Eye dog Whitney and I took a commuter train to Wilmette, a Chicago suburb, to talk with 400 students at St. Francis Xavier School. School leaders wisely broke the students into two groups – I spoke with the kids between kindergarten and 4th grade first, and then spent an hour with the kids between 5th and 8th grades.

Teachers read my children’s book Hanni and Beth: Safe & Sound to all the younger ones before Whitney and I arrived. The older students prepared for our visit by watching our wonderful What’s it Like to Go Blind? video – that’s the YouTube the guys at The Good Stuff put together for us. With all that advanced research under their belts, the kids were armed with some very well thought-out questions when Whitney and I arrived.

In addition to asking the classic ones about how I get dressed, how I cook, and how I drive, the kids at St. Francis Xavier came up with some questions I’ve never been asked before:

  • How long did it take to adapt to your blindness?
  • When you write your books, how do you see the edits?
  • You know how, sometimes, when the sun hits your eyes, and you squint, but you keep looking at the sun for too long, and then, you close your eyes real tight, and it makes you see colors? You know, like fireworks? Well, if you do that, can you still see those colors?
  • Does your dog ever make a mistake?
  • If they didn’t pick a dog for you, and you could choose your own Seeing Eye dog, why would you choose Whitney?
  • How did you get here to take chances?

I really appreciate — and encourage — children’s curiosity, so I assure kids ahead of time that I’ll answer absolutely every question they ask during my presentations. I repeat each question before I answer it, too, so that one, I can make sure I heard it right; two, everyone in the audience can know what the question is; and three, most importantly, I have time to come up with an answer.

The kids were all seated criss-cross applesauce on the gym floor during our presentation, shortest ones in front, tallest in the back. That last question, the one about taking chances? It came from the front rows during my first presentation, which made me think the boy who’d asked was in kindergarten.

“How did I get to the point where I have to take chances?” I repeated. “Why do I have to take chances?” I’d never, ever been asked that one before. “Hmmm,” I said, turning my head toward the sound of the little boy who’d asked. “I’m going to need a couple seconds to think that one over.”

I started pondering my answer. Why do I still take chances? Didn’t I just break my hand in December after a fall? Wouldn’t you think I’d take fewer chances, seeing that I’m blind and all? Maybe this boy was right, maybe I should slow down….

Just when I was about to credit the kindergartner  for making a good point, he interrupted. “Not chances,” he said, sounding exasperated by his lisp. “Francis! How did you get to Saint Frances?” He just wanted to know how Whitney and I had managed to make it on our own all the way from Chicago to his school in the suburbs that day!

Guest post by DJ Mermaid: No thank you, peeps!

As promised, here’s guest post #2 by DJ Mermaid. In our hour together this past week she and I discussed some of the positive comments you left to her post last week. She isn’t quite ready to respond online to the comments you leave here, but trust me, she does read – and reread – them, so keep ‘em coming. Her guest post this week gives you a glimpse, ahem, of what a role model she is for me when it comes to self-advocacy.

by DJ Mermaid

Humans are very kind and helpful, even when you do not want it (although it is nice to have help “sometimes”). I have a physical disability and I get a “Do you want my hand, sweetie?” a lot.

DJ Mermaid and her little bother, er, brother.

DJ Mermaid and her little bother, er, brother.

I have cerebral palsy (CP) and I move a little different than anybody else does. Here are my tips on how to decline help when not needed:

  • In public always do things with your head up high and with a confident air to them. (That makes people know you are a PERSON!) It also may reassure people that you do not need help.
  • Say no politely when people ask you if you need help when you don’t need it.
  • If people just grab your hand or another part of your body physically without asking first, say NO quite loudly!

I have had a few experiences that I want to share with you so that you can get in my shoes — or fin, as I should say.

I was in Schaumburg, enjoying dinner at Bonefish Grill with my grandparents. (If you go I recommend Bang Bang shrimp). We were walking down the sidewalk when out of the deep blue sea this weirdo woman extended her hand and expected me to TAKE IT! (I was doing quite fine on my own if you ask me.) Of course, like I should have done I ignored her hand and said to her, “No thank you!”

Thankfully I survived that, but sadly human nature struck again at school when I had a substitute teacher’s assistant one morning. My amazing mom and I ascended the stairs leading into the school facility when an aide walked out and put forth her hand to take me into the building. I brushed by her and said, “No thank you!”

Just before I went in, my mother hugged me and said, “The first thing this woman wanted to do was grab your hand. Make sure you educate her today.” DUH. I know, mom.

One person, though, treats me like all the rest. Introducing… my little bother — er, brother that is. He always wants to win games that we play, always wants more dessert and so on. Sadly with him I can’t use CP to my advantage. Although I sometimes despise him, he and I protect and stand up for each other.

At school once I heard some of his classmates making fun of me. Literally the next morning in SCHOOL (!!) my brother and the boys marched up to my desk and somberly apologized. I didn’t even know it, but my brother SCREAMED at those boys and he and his teacher made them apologize.

Well that’s the end of my 2nd post!

-DJ Mermaid!

Good friends, good music, good wine

Our friends Jim and Kathy Zartman invited Mike and me to a pretty cool event tonight. We’re going to a gala that benefits the Chicago School of Violin Making, and it sure sounds like my kind of party:

  1. Starts early – 6:30 p.m.
  2. Begins with a sampling of three to four wines
  3. Promises ”substantial”  Hors d’oeurves along with the wine
  4. Features a string quartet during cocktail hour
  5. Ends with Acclaimed violinist Rachel Barton Pine playing a number of different violins – one of them made by the violinist from the quartet we will have heard earlier.

I’ve known Jim Zartman for nearly five years — his wife Kathy is in the memoir-writing class I lead on Thursday afternoons for Lincoln Park Village. Jim often drives Whitney and me to that class, and during those rides together over the years I’ve had the privilege of hearing his stories about growing up in a small town in Illinois, the mother who gave him his first violin, and getting free room and board in exchange for working as a houseboy for John Kenneth Galbraith’s family at Harvard. “They said they named their son Jamie after me,” he told me once. “But I’m not sure that’s true.”

Jim is not exactly forthcoming, but when I ask questions, he answers. In our 20-minute rides to class he’s shared stories of raising a family with Katherine, his appreciation for his talented grandchildren, his work writing the Illinois Power of Attorney Act and then getting it through the state legislature during his career as partner in the Chicago firm of Chapman and Cutler, and his role as president of the board of the Chicago School of Violin Making.

Jim and Kathy Zartman.

A couple years ago Jim arranged for me to have a tour of the school, wich is one of just three violin-making schools in the United States. Jessie Gilbert, a graduate of the school who took over for Jim as president of the board there last year, led my one-on-one tour. Her strong hands guided me along blocks of maple and spruce that were to become instruments, and I met teachers and students who had come from all over the world to participate in the schools three-year program — students aspire to the quality craftsmanship of the 17th and 18th century classical masters and are ready to enter the violin making and repair field as professionals once they graduate.

I didn’t stay long — it wasn’t fair to distract the students from their work. While I was there, though, I was taken by how quiet the workspace was  — no music to work by, just the intense sound of careful carving and fine sanding. And tonight, I’ll have the privilege of hearing Rachel Barton Pine perform on some of the results of all that hard work. This. Is. So. Cool.

Guest post by DJ Mermaid: How I came up with DJ Mermaid as a pen name

Here she is, DJ Mermaid, with her first guest post.

Everyone knows the rule: Only post on the Internet if you won’t have it bite you back later. That includes your personal information for some people.

I am one of them.

This is because I did a StoryCorps interview that went on NPR and then I wrote a post for the Easter Seals national blog. Those go alllllllll over the country and take comments, and I worry about negative comments and social media backstabbing.

So I wanted a pen name.

DJ Mermaid and family doing their best Mary Poppins.

DJ Mermaid and family doing their best Mary Poppins.

I happen to love mermaids and music (preferably Taylor Swift and Julie Andrews). Now let me give you a little back story on why I like these two things.

The whole mermaid obsession started when I was about two — roughly. I was at my grandparent’s house and I was watching The Little Mermaid with my young aunt. Of course I immediately fell in love with Ariel, the youngest mermaid princess of King Triton. I loved her because at the time I couldn’t really walk and she couldn’t really walk on land either. This made this my favorite movie up until I was six and saw The Sound of Music (more on that later).

About DJs: A DJ is someone who plays music and has a deep passion for the artist/band they like. This is me because I love parties, music, and the pops style.
I got into Taylor Swift when I was about 7-1/2. My friend Emily loved her music and I decided to give it a listen.

I listened to the song “Love Story,” a modern take on Romeo & Juliet. I read the play after I listened to the song. I decided I like her music a lot.

I went to Taylor Swift’s 1989 album World Tour at Soldier Field last summer. I had a lot of fun. While Taylor Swift was singing, two teenage girls sitting in front of me moved out of their seats so I could see Taylor (and her chic outfits!) super-clearly.

My parents and I were up past midnight that night. I was belting out the songs and my dad was just drinking beer and margaritas.

Julie Andrews is probably the best classical singer of all time. I loved her in her role as Maria, the nun from the Salzburg Abbey in The Sound of Music. When I was in kindergarten, my whole family dressed as the Mary Poppins cast because I loved the movie so much and because my favorite actress was in it. (I loved her and her role in both of the movies mentioned!) I was Jane Banks. I wore braids and a Victorian dress.

Well, that’s the end of my post, folks! Bye.

-DJ Mermaid

Introducing…DJ Mermaid

I published a post here last week about some of the writers I recruited to put together guest posts about love and relationships for Easter Seals (I have a part-time job moderating the Easter Seals national blog). One writer I didn’t mention in that post is the nine-year-old daughter of a health professional I saw eight years ago after I hurt my rotator cuff. This girl was only two years old then, but she remembers visiting her mom’s clinic once when I was there and petting Hanni, my Seeing Eye dog. “She was soft!”

I visited her public school in the suburbs a while back, and she and I have been email pen-pals ever since. She agreed to write a post for the Easter Seals blog about how much she loves her Dad, and after she sent the finished piece my way, I emailed her to let her know I’d be writing a short introduction for it. “Remind me –do you use a walker? A wheelchair?” I asked. “Without being able to see you, I don’t know.”

And here’s where that nine-year-old became the teacher. She wrote back with a question. ”Why do you need to know about how I move? Because this is a Valentine’s Day post and it’s supposed to be about my relationship with my Dad.

The nine-year-old writer with her dad

The nine-year-old writer and her dad

Good question.

I told her I needed to know how she gets around because the place I work –Easter Seals — is an organization that helps people who have disabilities. “So the posts are all about people who have disabilities, or legislation that involves people who have disabilities, or services or treatments that help people who have disabilities.”

I wrote her as if she was an adult. I told her I don’t particularly like thinking of myself as a person with a disability, but my job with Easter Seals pays me. “In general people who are blind have a hard time convincing employers to hire us if we can’t see,” I said, pointing out that over 70% of Americans who are blind are unemployed. “And so, when Easter Seals offered to pay me to moderate their blog, I accepted the job.”

I explained I get paid to lead memoir-writing classes and to write books and articles and make presentations, too, but my Easter Seals job is steady work, and my work writing and doing presentations and leading classes comes and goes. I told her it’s good to have one paycheck to count on week after week, so I accepted the job.

“All to say that I will *totally* understand it if you don’t want me to mention anything about disabilities in my introduction, but if I don’t mention a disability, it won’t qualify to be a post on the Easter Seals blog and they won’t let me publish it there.”

She thought long and hard about all this, and we worked on the introduction together. In the end, the introduction to her post on the Easter Seals blog describes her as an attractive nine-year-old who plays piano, writes stories, and loves to bake. “She has a physical disability that doesn’t stop her from doing anything she wants to do,” the intro says, and that’s absolutely correct! I was happy with the outcome, and even happier to learn a lesson in advocacy from a nine-year-old.

The two of us worked so well together that after her guest post was published on the Easter Seals blog, she asked her mom if she could take a writing class with me. “Not sure how this could work,” her mom wrote. “But she has some time now if you do.” Turns out my young writer is home from school for the next six to eight weeks while they try a casting program — she has casts from her hips down to her ankles, on both legs.

I had time.

My Seeing Eye dog Whitney and I took a train to visit her for our first class a few weeks ago, and after a quick hour of discussing our writing and our goals, I gave her an assignment to write a guest post for our Safe & Sound blog here. Our plan is for her to work on one blog post every week and email it my way when she’s done. I’ll use my talking computer to read through her rough draft, come up with comments and questions, call her every Friday, and we’ll discuss the edits together out loud. She’ll make the revisions she agrees with, email the post back to me, and…voila! This up-and-coming young writer will be published on our Safe & Sound blog. She’s working on revisions to her first piece now. It’s about how she came up with her pen name, and that means you lucky Safe & Sound readers will soon be reading a guest post here written by…DJ Mermaid!

That doesn’t mean there’s any less love in it

I have a part-time job moderating a blog for Easter Seals National Headquarters, and in honor of Valentine’s Day, Easter Seals HQ is devoting the month of February to stories about “love and relationships.” My mission? Recruit people with disabilities (or those who love or have a relationship with someone who has a disability) to write guest posts on the subject.

I started by contacting a writer in one of my memoir classes. She often mentioned her fondness for a brother-in-law who’d been born with developmental disabilities back in the 1940s. Gerald died in December, and when I contacted this writer to see if she had any interest in writing about him for Easter Seals, she emailed back and wasn’t ready just yet. “Would it be okay to pass the opportunity on to my daughter Katie?”

Katie Irey started her Tribute to my Uncle Gerald post explaining that her Uncle Gerald was a lifelong Trekkie. “I didn’t know my uncle when he was a child, but I imagine he may have found some comfort in this TV community where it was okay to be different,” she wrote. “In fact, it was celebrated.”

Katie was a teenager in 1995, when “Star Trek: Voyager” introduced Captain Kathryn Janeway, its first female commanding officer. “Whenever we were together, Uncle Gerald never failed to remind me that the Captain of the Voyager and I had the same name, Kathryn, that she was the first female Starfleet commander, and that maybe I could be a commander, too,” she said. “This I believe was my uncle’s way of encouraging me to pursue my dreams, and letting me know how proud he was to be with me on my journey.

Another guest post on the Easter Seals blog was written by Bryan MacMurray, a friend I met at the University of Illinois. Bryan is blind, and he’s married to a woman who uses a wheelchair. Lots to say about all that, so Bryan’s essay was split into two. One part is about Bryan and Joanna’s lives now, after retiring to Arizona. The other part is called Every love story is beautiful, but ours is my favorite, and it explains how the two of them met in an elevator. “I realized right away this sweet-sounding girl with the slight accent was in a manual wheelchair,” he wrote. “That was fine by me — I am just a couple of inches over five feet tall, and I tended to like girls who didn’t have a big height advantage.”

Today the Easter Seals national blog published a piece by Bernhard Walke, whose five-year-old daughter has cerebral palsy (you might remember the post we published here on the Safe & Sound blog when Elena dressed as a bulldozer for Halloween).

Elena in bulldozer costume in wheelchair

Elena, the bulldozer.

Bernhard is an administrator at a high school situated in a Chicago neighborhood that has a long history of gang activity, marginalization, poverty, and other social problems. His wife Rosa is a teacher there, too, and his guest post is about the kinship their high school students have formed with their daughter.

I encourage you to visit the Easter Seals blog to read Bernhard’s thoughtful post in its entirety, and I’ll leave you here with a sneak preview I know will leave you wanting for more:

As I pulled into my parking spot, assembled Elena’s wheelchair, and planted her in it, I heard the 3:30 dismissal bell chime. I grunted and bemoaned that I would have to navigate my way through hundreds of high school students at dismissal in order to pick up my wife.

As I began to make my way through the halls, though, one of our senior boys who is typically very quiet and has a meek personality noticed me pushing my five-year-old through the crowded halls. He sprung to action, clearing a path like a border collie through the halls. He admonished other students,”Hey! Get off your phone and pay attention! Mr. Walke is trying to get through with his daughter.” “Javier! Can you get the door and hold it open for Mr. Walke and his daughter?” “Mrs. Walke! Mr. Walke and your daughter are both here.”

I thanked him for his unsolicited help and we were on our way to Elena’s appointment.

As we were driving back home, I marveled at the selfless love and care that this student demonstrated toward a young five-year old that he had just met. I also remembered that this student had lost his mother at a young age. It was just him and his father at home. I like to think that we both realized that life doesn’t often go as planned, but it doesn’t mean that there is any less love in it.


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