We just got the official news that our summer camp for kids with trachs was cancelled this year. With all the closings due to COVID-19, it’s no surprise, but it’s absolutely gut wrenching for the campers and the volunteers who go each year. Especially for the campers. Last summer, as we packed up to leave, the little boy I drove up from Savannah asked me what day it was. I told him it was Friday. He promptly replied, “Then I want to come back Saturday.” He meant the very next day. Camp is a world of its own. It’s an escape from reality.
I’ve been reflecting a good bit this past week about camp. About what it means for kids with special needs, whose daily lives are filled with treatments, procedures and medications. Kids who are often singled out and maybe even bullied at school because of their differences.
This reflection led me to remember a hectic day last summer. We’d just gotten our group of campers into the cafeteria for lunch, when two of mine said they needed to use the restroom. One of them uttered those dreaded words, “I don’t know if I can hold it.” SO, we set off at top speed for the bathrooms. The two campers in my care had just shimmied through a row of other campers seated at long tables, when a little guy I didn’t know from a different special needs camp jumped up and stood between me and my little guys.
Before I could say a word about needing to catch up to my charges, he said (in such a serious tone of voice it was almost alarming), “I’m in that house too.”
He stared at me. Expectant. Waiting. I had no clue what he was talking about for a good 10 seconds (as I’m hoping we won’t completely miss lunch because we have to walk back to our cabin and changes clothes before the next activity). Then it hit me. I was wearing a T shirt with a printed Gryffindor logo on it. Luckily, I recovered fairly quickly, considering. “Oh, yeah,” I said. “I’m a Gryffindor through and through.” His face. It just lit up completely. We’d connected. Not through that physical place, as magical as it is. But through a world built by J.K. Rowling.
This is why I’m passionate about writing books for kids. They can’t always escape physically to a place where their problems feel miles away. But, hopefully they can always pick up a book and escape to a world built by an author. In these days of isolation, we need this more than ever! We need to build connections with people we might not get a chance to see in person like we used to. We need to see someone across a crowded room, and stop them to say, “I’m in that house too.”
With the help of Kickstarter and some amazing collaborators, I was able to raise the funds I needed to bring Jeremiah Justice Saves the Day into the world. Local Savannah artist Rashad Doucet agreed to illustrate the book, and his work is amazing! Every page has movement and action. I think kids are truly going to love this book.
I wanted to take the chance to share some of Rashad’s illustrations. Enjoy! More news will be coming soon regarding the date the book will be available to purchase. Thanks to everyone who has helped make this dream come true. I hope we can break some barriers and show that special needs kids can most definitely be superheroes.
I recently read an article that gave valuable insight into why life for a person with high functioning autism (frequently still called Asperger’s Syndrome) is so challenging. It’s one of the best I’ve read to help us “neurotypical” people empathize with those on the spectrum. If you know a single person on the autism spectrum, please take a moment to read this (click hyperlink above). I forwarded it to several people that I especially wanted to read it, and I hope they did. If we can change the lens we view people with ASD through, our interactions with them can become more positive, and hopefully there will be less misconceptions on our part for their actions.
Let’s be honest. Sometimes, it’s easy to get frustrated with someone who gets upset by so many things that “shouldn’t” bother him. We think, It’s not that loud, it’s not that bright, I can’t even hear anything. It’s tempting to want to say, “Just do it.” Whatever “it” happens to be at the moment. Go there. Do that. Say this. But what me, and anyone else that loves a person on the spectrum, sometimes forget is how much tenacity, sheer will, and courage it takes to just get through a plain old day. Like so much of autism spectrum disorders, this tenacity is invisible. The world doesn’t see it, because the world doesn’t see what it takes for someone on the spectrum to cope with his or her challenges in the first place.
If you’ve read my previous blog post What I’ve Learned in the Asperger’s Trenches, you’ll know I have a son who was diagnosed with Asperger’s in preschool. He’s almost 21 now, and even though it’s been a long and sometimes painful journey to get to this point, we still celebrate the milestones he reaches–even though some days each tiny step forward is followed by a big leap backwards. Life is tougher for him that I wish it was. But I wanted to write a post acknowledging exactly what it’s taken for him to get to where he is today.
I chose the word tenacity for the title of this blog because it represents one of my son’s character traits that has been a part of his personality for as long as I can remember. He actually has many of the same personality traits as terriers: intelligence, loyalty, bravery, and especially tenacity–an absolute unwillingness to give up on something he’s set his mind to do. But it’s the trait of tenacity that’s helped him persevere through the worst times.
This trait showed up at an early age in my son. His preschool teacher observed that he was very rule oriented and thrived on structure. She used this to set goals for him, and by God he was going to make that goal no matter what. It continued on into Boy Scouts. He joined a troop when we moved back to Georgia (from Germany) that had some boys who ostracized him, at one point even informing him that he couldn’t stay in their patrol. I’ll admit, I suggested he find another troop, but my son wasn’t having it. He called the scout master and asked if the other scouts could decide who stayed in patrols. When he heard the answer was no, he said, “Good. I’m staying in my patrol then.” He wasn’t going to let anyone keep him from his goal of becoming an Eagle Scout. Which he accomplished beautifully.
When he started playing the saxophone, he was in one of the lowest “chairs” in his middle school band. This didn’t seem to bother him until the kid next to him started annoying him throughout the entire class. I made a comment that if he moved up to a higher chair, he wouldn’t sit next to that kid anymore. Once my son latched on to that concept, he started practicing the saxophone like his life depended on it. By the end of the year, he wasn’t only in the top chair he was awarded the Outstanding Woodwind Player in his band at the final concert. In high school he was nominated for the Governor’s Honors Program for music.
When he started looking at colleges, his first choice was Georgia Tech in Atlanta. Known for extremely competitive acceptance rates and challenging course work, it was nevertheless where he set his sights on going. Not only did he get accepted, he was accepted “early action” which affirmed his decision to go there in the first place. But it hasn’t been easy, to say the least. At Georgia Tech, sheer tenacity has kept him hanging on through some of the most challenging years of his life. When he mentioned the possibility of transferring to a less rigorous school, my husband and I fully supported his decision to do so. But ultimately, he has stuck it out at Tech and will be a senior in August when the Fall semester begins. Seeing him walk across that stage to receive his diploma will be an absolutely overwhelming moment of emotions for me, representing a culmination of years of overcoming obstacles.
If you are a parent of a child on the spectrum, I’d love to hear from you. We’re definitely all in this together. My best advice is to take each day at a time. Don’t look ahead too far into the future, but celebrate the small successes of today. I’d love to celebrate your child with you and cheer for him or her to reach every single goal.
Several years ago when I taught fourth grade, I attended a training on childhood poverty. We were each handed a tool to measure how comfortable we were doing various tasks. The questions were things like, “Would you know how to cash a check without a bank account?” and “Could you organize a formal function for 300 guests with a seating chart?” I don’t remember what the exact questions were, but when I was finished and was told how to “score” my inventory, it revealed that I was solidly middle class. How could this assessment measure my social class? It simply looked at the tasks that I felt I could easily accomplish. I felt completely comfortable performing tasks that middle class Americans tend to perform on a regular basis, and because of this “comfort zone”, I was categorized as middle class.
Why is this important? Because most teachers in America come from a middle class background. It’s what they know. It’s where they are comfortable. It’s what they understand. Therefore, when planning lessons, assigning homework, holding conferences with parents and interacting with students, the teachers are viewing each situation through a “middle-class lens.”Through this workshop, it became apparent to me that the very way I perceive the world, react to situations, evaluate objects and behave are all tied to my socioeconomic level.
And this is fine if I’m teaching in a school where my students all have the same perceptions and experiences. But what about when we have students who live in poverty? When assigning homework and projects, don’t I make the assumption that my students will have pencils, crayons, paper and electricity? And to be honest, don’t we tend to assume that a student will have a parent to help them? Because we help our kids and our own parents helped us. This is where we can run into trouble.
The book, How to Steal a Dog, offers readers a glimpse into what life is like for a child living in poverty. Even though Georgina’s family has lost their apartment (after being abandoned by her father), life goes on for them. Her mom still has to work and the kids still have to go to school. They live in their car with no assurance of safety, no comfort, and no real hope that things will get better any time soon. Georgina’s teacher isn’t aware of her changed circumstances and makes incorrect assumptions.
I highly recommend this book. Read it yourself and read it with your kids. It offers a wonderful insight into what life is like for families living in poverty. Families who are hit with unexpected setbacks or tragedies that change their circumstances in the blink of an eye. If you’ve read this book, I’d love to hear what you think. Also, if you’re a teacher with experience teaching children who live in poverty, please reach out and let me know of your experiences.
My heart soared when I read the first line of Grandma’s journal. “Today has been perfect.” Wow, what could be better? She was 28 years old, married to the love of her life and a new mother. But on the very same page, I read how scared she was to think of her little boy ever being sick. Fast forward 20 years, and that beautiful young man was dead from brain cancer which struck him during his first year of college. Reading the intimate thoughts of a person I’d loved so dearly was an emotional roller coaster. However, I learned some lessons from her words that I want to share.
My grandparents loved each other. Almost daily, she expressed her gratitude for the wonderful man she’d married. I delighted in reading of my grandpa coming home from duty at the Naval Hospital in Rhode Island where they were stationed and helping wash and fold diapers, cook dinner, clean dishes or anything else to help make things easier for my grandma. So much for my preconceived notions of gender roles of American couples in the 1930s!
They helped their families no matter what. Even in the midst of a depression and a cut in my grandpa’s navy salary, they sent bi-monthly checks to help siblings go to school and sent money to help her parents “make ends meet” each month. They would drive 2 hours to provide respite care to in-laws who were caregivers for an elderly parent. Many times over the months chronicled in her journal, my grandma wished she could help even more and expressed worry for her family members.
Bank were literally closed. After mention several times of bank closures, I went and looked it up. Sure enough, in an effort to restore confidence in American banks (by keeping people from rushing the banks to remove their money) FDR closed banks for a period of time. Many times she wrote of uncertainty about the future and worried how they’d manage.
Some things never change! Certain emotions and sentiments are universal. Over the course of these months, Grandma expressed her frustration with “politicians in Washington”, her hopes for the future, her love for her child and spouse, and her gratitude for it all.
President Roosevelt was almost assassinated. I probably read this in a text book years ago, but I’d obviously forgotten it. Grandma mentioned her brother going to Washington for the inauguration of FDR (which strangely was in March, not January) but also expressed her shock that a month earlier someone had tried to kill him. Sure enough, back to the Internet I went, and discovered that when he was still President-elect, a man in Miami fired shots at him.
They used funny expressions in the ’30s! I learned that “plum caflooey” means an awful lot of something and that if you’ve “fallen off the roof” it’s time to stock up on feminine supplies for the month. Also, if a person is “prickly”, you may just want to give them some space. I’m sure there are more, but these are the ones that jumped out at me. 🙂
If you have the chance to read a journal of a loved one, please do. It was such a treasure to me and it creates the desire to leave words for my future grandchildren to read.
Sometimes book titles can literally be the hardest part of writing an entire novel. You can spend months or years thoughtfully creating characters, putting them into situations that create drama or suspense for your readers, and crafting dialogue that feels natural and realistic. But once the book is finished, finding the perfect title that feels worthy of the story can be elusive–nothing seems quite right. If you’re lucky, you’ll come across something that strikes like lightning, and you’ll know you’ve landed the perfect title.
That was the case for my latest novel, Go Forward with Courage. A central part of the novel deals with Michi and her family, who are forced to relocate to an internment camp in Arkansas after the Japanese attack on Pearl Harbor. For the thousands of families impacted by the Executive Order to remove all citizens of Japanese ancestry from the west coast, every step of their journeys to these camps took courage. But it didn’t end there. When they were finally allowed to leave at the war’s end to return home, what were they returning to? It varied of course, but for many of these displaced persons, they had nothing tangible to return to.
The title, Go Forward with Courage comes from a quote by a Native American Chief after his realization that he had no other choice but accompany his people to a reservation.
“When you are in doubt, be still, and wait; when doubt no longer exists for you, then go forward with courage. So long as mists envelope you, be still; be still until the sunlight pours through and dispels the mists — as it surely will. Then act with courage”.
Pocono Chief White Eagle
When I came across this quote while writing the novel, the similarity of the plight of the Japanese-American citizens displaced from their homes to the Native Americans generations earlier seemed incredibly relevant. My character Michi, and the thousands of others like her, would need courage to face the unknown waiting for them when they returned “home” after the war. Some of the images captured from that time period, express more than my own words ever could.
I have so much admiration for the people who rebuilt lives after having them interrupted during the war. The courage it took is inspiring, and I hope that my story does them justice.
I was fortunate enough to attend my first Dragon Con last weekend in Atlanta with my family. This was the 30th anniversary of the pop culture, fantasy, and sci-fi convention, and I was joined by more than 77,000 others on this adventure. According the the post- convention press release, “Fans came from around the world and all 50 states, with this year’s convention attracting people from as far away as Japan, New Zealand, and Fiji.” In other words, I was in good company.
What I knew about Dragon Con is that people engaged in cosplay–dressing up as their favorite characters from movies, comics, television programs, video games, and just about anything that reflects their interests. I knew this because I’ve assisted my young adult kids in making these costumes and/or purchasing items to make them look authentic. I vaguely knew that they held panels for people interested in writing because my daughter, who volunteered this year in media relations at the con, had told me about them last year.
What I didn’t know about Dragon Con could fill Lake Michigan. Here’s just a few facts that I found impressive.
The con has it own awards/recognition program called Dragon Awards. These recognize the creators of science fiction and fantasy in books, comic books, games and filmed entertainment.
The con raises money for charity. According to the press release, $98,000 was raised this year for its 2016 official charity, the Atlanta Center for Self Sufficiency, which helps put homeless individuals on a pathway to achieving a healthy independence.
The con attracts famous actors, writers, producers, etc. There was some serious talent in that place. There are far too many to name, but a few of the individuals that I’ve watched in television during my lifetime were in attendance such as Alex Kingston, William Shatner, Gillian Anderson, and Jason Isaacs and Adam Baldwin. There was a pool of talent at the con that would appeal to people of all ages and interests.
The sheer size of the con! I mentioned the numbers above, but nothing would prepare you for how many individuals (costumed or not) were crowded into a huge area of Atlanta. Event organizers added more than 215,000 square feet to the venues, including the AmericasMart Building 2. The con consumed meeting space in the Sheraton, Marriott Marquis, Westin, Hyatt and the AmericasMart buildings.
The con is quite civic minded. In addition to the fundraising efforts, there was a blood drive held in which over 6,000 units of blood and blood products were donated to an Atlanta blood bank. Also, disability services were visible everywhere and provided assistance to individuals with special mobility/seating needs.
The diversity of the people attracted by Dragon Con was one of my biggest surprises. There were people there who were less than half my age as well as people (almost!) twice my age. There were people there of every race, gender and socioeconomic level. Some costumes were Captain America shirts from Walmart and some looked professionally made to the cost of thousands. The attendees for the most part were gracious with posing for pictures, and seemingly unflustered by the long (and I mean long!) lines, wait times and sheer crowds you had to part to just move anywhere. I loved seeing families there with their kids, all in costume having a great time.
I’m saving the best for last. 🙂 I was stunned at the writing community that was in attendance. There were some terrific panels at the con on the writing craft as well as specific elements of publishing. Brandon Sanderson, who is probably best known for finishing Robert Jordan’s epic fantasy series, The Wheel of Time, was on a panel that I attended. I ran into him outside of one of the hotels and he was warm and gracious in answering a question and then chatting for several minutes. The authors who attended seemed very willing to interact and share insights with attendees. I was impressed with the breadth of options of panels to attend that focused on writing.
My takeaway from Dragon Con 2016 is that there is truly something for everyone there. If you’ve ever read or watched anything related to science fiction or fantasy, if you’ve ever watched superhero movies or read comics, if you enjoy art or especially if you like people watching–this is the place to be during Labor Day weekend in Atlanta.
Have you been to Dragon Con or think you might be interested? If so, I’d love to hear your comments! For more information on Dragon Con 2017, please visit the website www.dragoncon.org for more information. You can also follow them on Facebook and Twitter.
As an author, a mom to a special needs son and a pediatric nurse, I am always on the lookout for books portray a realistic representation of the American demographic. We are not all “the same” and that is one of our country’s greatest strengths. One underrepresented group of kids that I’m particularly sensitive to are kids with ‘disabilities’ that make them look or act different from other kids. Here are some picture books for very young children that can begin to introduce characters with special needs in a positive light.
Keeping Up With Roo by Sharlee Glenn
I will admit that this book hits close to home. My older sister Mary Beth was always so excited to be an aunt. But each of her nieces and nephews, as they grew older, came to realize that she was different than other adults. This is what happens to the main character Gracie in this story when she starts school. When Gracie brings her friend Sarah home from school, she feels embarrassed about Roo’s behavior. Like all children who have a family member who is “different”, Gracie has to comes to to terms with her aunt’s differences and realize what is really important in life.
Susan Laughs by Jean Willis
I love the fact that this picture book focuses on all of the things the main character Susan does that are exactly like every other kid in the world. It isn’t until the very last page of the book that the reader will discover that Susan is in a wheelchair. I took care of a beautiful, smart and sassy little girl who uses a wheelchair and I see her on every page. I highly recommend this book to parents of preschoolers. When you reach the end of the book, the illustration of Susan in her wheelchair provides the perfect teachable moment to discuss all of the similarities Susan has with your own child.
3. My Brother Sammy Is Special by Becky Edwards
I love the way this book explores the complex sibling relationship that occurs when one of the sibling’s has special needs. Generally that sibling is parented differently, with a different set of rules and expectations. The author allows Sammy’s brother to express his resentment and frustration, but ultimately focuses on his love and concern for his brother. This book would be the perfect gift for any child with a special needs sibling.
4. Just Because by Rebecca Elliott
What I love most about this book is that the younger brother Toby is too young to understand exactly why his big sister Clemmie can’t do the things that other kids can–but he doesn’t need to. In his innocent and accepting heart, he just loves her like she is. The author depicts the positive things these siblings can do together, even if it isn’t what most siblings can do. The writing is beautiful and the illustrations are enchanting. Children with siblings like Clemmie are going to be faced with many challenges as time goes on, but this book’s purpose isn’t to tackle the hard stuff. It’s to focus on the love and affection that is at the heart of the sibling relationship. And it does it beautifully.
5. A Friend Like Simon by Kate Gaynor
This book doesn’t focus on the sibling relationship, but on the struggles kids on the autism spectrum have making friends at school. I love this book. I see so much of my own son in the character of Simon. This story is told from the perspective of a kid who is trying to be Simon’s friend at school. But it isn’t always easy. It takes more time and effort to get to know kids who are on the spectrum, but this book shows that it can often be well worth the effort. As a mom of a “Simon” myself, I appreciate the kids who make the effort.
6. The Invisible Boy by Trudy Ludwig
For any parent of a quiet child that’s felt left out of the “popular group” at school, this book is a true find. The illustrations by Patrice Barton add to the impact of the words because Brian (the invisible boy) starts out gray and becomes more colorful as he begins to see himself as fitting in with someone–anyone. This book truly shows that it only takes ONE kind child to reach out to an “invisible kid” and make them feel a part of a class. Parents, I urge you to teach your children to be this one child. There are “Brians” out there in every classroom. I’ve taught elementary school, and I’ve witnessed the change one child can make.
This list is certainly not inclusive of all the excellent books out there. However, these 5 titles resonated with me in a special way. If you have other books to recommend, please comment and let me know about them. I’d love to hear from you!
**Please note that I am not the copyright holder for any of these books, and am using the cover images to aid in readers locating the books at their local stores or libraries.
A few weeks ago, our pastor asked me to share a story or memory about my sister during her memorial service. I managed to pull myself together enough to share a story that took place at my grandfather’s funeral many years earlier. I’ve had people ask me about it, and share with me how much they enjoyed the story. So, in the words of Paul Harvey (who happened to be one of my grandfather’s favorites) here is “the rest of the story”.
September 12, 1981 was the day my childhood abruptly ended. It began as an almost idyllic Autumn Saturday. My mom had taken us to Stone Mountain Park for the Yellow Daisy Festival, and we had spent the morning browsing through rows of handmade crafts and funnel cakes.
When we got back to the house, my mom dropped us off the swim while she went grocery shopping. I was thirteen years old that day, but by the time the sun went down I felt about sixty. The sibling dynamic in my family had always been skewed because my older sister had been born two months early, leaving her with disabilities. I functioned as the oldest sibling, even though it was never acknowledged formally. On this fateful day, my sister Mary Beth had decided to stay inside while my younger brother and I swam. After about thirty minutes of enjoying our typical pool antics—cannon balls from the side, diving for rings, contests for holding one’s breath underwater, etc.—my sister appeared at the back door looking as if she’d seen a ghost.
“Some lady just called,” she announced in an unrecognizable tone, “and said that she’d ‘heard in passing’ that Grandpa died.” She looked as if she’d seen a ghost.
I swam to the side of the pool. “Grandpa Callaway?”
She swallowed hard, still pale and shell-shocked. “No. She said it was Grandpa Walter.” But this simply couldn’t be possible. My grandpa was a doctor who still saw patients every day. He was full of life. I’d spend the weekend before with them in the mountains and he’d been perfectly fine.
I was out of the pool and to the door within seconds. I didn’t even bother to completely dry off before rushing to the phone hanging on the wall of the kitchen. I punched in the numbers to my grandparent’s rambling old farmhouse in the mountains from memory. As the phone rang, I tried to think of a reason for calling. I surely couldn’t explain to Grandpa the real reason for my call. But he didn’t answer the phone that day and neither did my grandmother. At that moment, I just knew. The woman on the phone had been right. With my mom gone, I had to become the adult and hold things together until she got home and could find out what had happened. Once you take on the role of adult, there’s no going back to the innocence of childhood. I discovered this on that day.
The funeral was held at the church my grandparents had attended for years-a white frame building constructed in the early 1900s. It was traditional in every sense of the word. The day of the funeral, the place was packed. People stood along the sides and the back of the sanctuary, and people even stretched out the doors into the churchyard. After all, Doc Walter had treated most everyone in the valley at one time or another, having been the only doctor around for miles. People came out in droves to pay their last respects to the Doc.
My sister, Mary Beth, taped her favorite television programs years before anyone had ever thought to make VCRs. Armed with a Kmart cassette tape recorder, my sister would record an hour long program—the first half on side one of the cassette tape, and the rest of the show on side two. Of course, this meant you couldn’t talk, cough, or clear your throat during the entire program without suffering her withering stare and flapping hands to silence you. But come hell or high water, those shows were going to be taped. Mary Beth also traveled everywhere with her trusty tape recorder. So it was no surprise to anyone who knew her that she had it clutched in her arms when we walked into the church for the funeral.
Mary Beth had decided that we needed to record the funeral-partly because my grandmother was too distraught to attend. This task was delegated to my father—a man who has the biggest heart and the best of intentions, but doesn’t handle stress all that well. He scurried around through the packed room and placed the Kmart recorder on the top of the organ. He asked the organist, who was rather elderly, if she would please be kind enough to push the “record” button and the “play” button down when the service began. She nodded her agreement as she pounded out the hymns that the family had requested be played.
Everything seemed to be going according to plan until the organist reached up and hit the “play” button only—just as the family had been seated. Mary Beth had placed the cassette in the recorder on the “B” side, which contained the second half of a Little House on the Prairie episode that she’d previously recorded. She must have really wanted to have a recording of Grandpa’s funeral pretty badly if she was willing to tape over that show—it was her absolute favorite.
When the blood curdling screaming started , no one else in the church knew what was happening. They simply looked around the church, bewildered by the terrified sounding young girl’s voice screaming, “Pa, help me! Help me Pa, I’m blind. I can’t see!”
But we knew! We knew the minute we heard the voice of Melissa Sue Anderson, who portrayed Mary Ingalls on the popular show—the organist had hit only play rather than both record and play simultaneously.
Try to imagine a quiet, simple, mountain funeral suddenly and most unexpectedly, filled with the loud screams of a panicked young woman. You could see people mouthing the word, “Pa”—attempting in vain to discover who this “Pa” person was. Surprised and startled looks spurred my mother to jab Dad in the ribs, and he promptly pushed and shoved his way as gently as possible through the people obstructing his path to the organ.
As unobtrusively as possible, he pushed the “off” button on the tape recorder and weaved his way back to the front row of the church—only to find his oldest daughter hyperventilating and flapping her hands wildly, and his wife fixing him with her penetrating gaze.
“You turned it off,” my mother informed Dad. “Now it isn’t recording the funeral at all.”
The look on his face was a mixture of bewilderment, incredulity and hostility. I could literally see the gears of his mind churning in circles as he realized that Mom expected him to find a way back through the throng of mourners to turn the recorder back on—the correct way this time, in order to spare any further outbursts from Mary Ingalls. But he got up and did just that. And now you know the rest of the story.
My sister was older than me, so there’s never been a time in my life when she hasn’t been there. Until this past week. I’ve had plenty of time to reflect on her life and I want to take a minute to share some insights about what it’s like to live with a disability that makes you feel marginalized and even invisible.
Mary Beth was born in 1964 two months ahead of schedule. There were no neonatal intensive care units back then, so they just tried to keep her warm. She survived, but it was obvious by the time she started school that she had residual effects of her premature birth. Over the years I have watched her be cheated, robbed, beaten and worse. Thankfully most people in the world aren’t completely horrible and wouldn’t dream of doing things like that to a person with a disability. But there are plenty of decent people out there who just “didn’t see her.” And those are the people who can truly make a difference in the life of someone like Mary Beth.
On this day of her memorial service, I want to ask you for a favor. When you come across a person like my sister, take an extra moment to talk to her. Ask her about her hobbies. Ask her what TV shows she watches or books she reads. Ask her what kind of music she likes to listen to. And when she answers, just listen. Lately I’ve been replaying my last encounters with my sister and grading myself on how much effort I put into including her in conversations. And I don’t always score very highly. I’ve been wondering what it would feel like to sit there and listen to people talk about their careers, travel, kids, and other adventures when you don’t have those things. I’m so thankful for those people who invested their time and energy into her life.
On thing we can likely all agree on is that the world needs more kindness these days. This is one easy way to start spreading it around to those who need it the most.
Mary Beth, you were loved by so many people. You will be missed!