Why My Daughter Isn’t Wearing a Costume for Halloween this Year

It’s no secret around the Walke house that I love Halloween. Perhaps it’s because it’s the last few days of decent weather, before the stress of the winter holidays sets in, and the last few days of daylight savings time. More likely is that Halloween provides me with an excuse to buy tacos de sesos (tacos made with brain).

In the past few years, my wife and my daughter haven’t really celebrated my enthusiasm for Halloween, but they’ve tolerated it at least. This year is different, though. Boy — is it different.

My daughter, Elena, lives with quadriplegic cerebral palsy and uses an electronic communication device to communicate. I thought that it would be a good idea to ask her school learning specialist and speech pathologist to task Elena with selecting a Halloween costume and writing about it. Perhaps, I’d get responses such as a rock star, a superhero, or a goblin. Who knows?

Elena gave us two options: a cat or myself. Since we weren’t sold on the idea of her going as herself, we thought that cat would suffice and we suggested getting cat ears, painting on whiskers and maybe putting on a tail. No, no, and no, were her responses. We were able to coax her into wearing a cat shirt and pants but that was about it.

So, we’ll probably have the most underwhelming Halloween costume this year, but I have to make peace with that because it’s Elena’s choice. And the more I think about everything, it makes sense. Elena tends to stick out wherever she goes. Even though the looks she gets are never mean spirited, she probably gets sick of it and just wants to go about things normally.

My not-so-little daughter will be turning 9 in a few days and I’m assuming she’s getting to the point in her life where she just wants to blend in a little bit more rather than be such a courageous person. I get that.

So, we’ll still go trick or treating, give out candy, and hang out with cousins, but it’ll be more low-key. It’s what she wants, it’s honestly less work for me and I still get to enjoy my tacos de sesos.

 

Imagine If There Were More Stories Like This Around Disability Employment

It was such a joy to share Alicia Krage’s posts here about her finding a job she likes so much — a story we don’t hear nearly enough from people living with disabilities.

If you haven’t read it yet, start from the beginning: bit.ly/alijobsearch

The unemployment rate of people living with disabilities is still much higher than that of the rate attributed to those living without any disabilities. Why? All sorts of factors. A few here:

  • Misinformation and misunderstanding of a prospective employee’s disability
  • Concern that the employer will not be able to accommodate for the disability
  • people with disabilities may not be aware of job openings or be able to apply for a job due to websites that are not built with accessibility in mind.

Let’s talk about accessible web sites for a second here.
Accessible websites are not only required, they make good business sense. One in five Americans has a disability, so making websites accessible allows a company or organization to reach an even greater segment of consumers.

And if Alicia Krage is any example, a greater list of valuable employees, too. My favorite part of the entire three-part series Ali wrote was about the job interview. She tells the interviewers that she takes public transportation everywhere and wasn’t sure she knows the campus well enough to be able to give campus tours (part of the job description for Northern Ambassadors). Ali asked if there was any chance she could primarily work on the phones in the call center, and guess what? They especially needed more people working call center shifts. It’s not always easy to find an employee who loves coming to work, but Northern Illinois University has exactly that in Ali Krage. They were smart to hire her. Congratulations to Ali, and, especially, to Northern Illinois University.

 

A Sense of Belonging: Looking for Employment – Part 3

A pair of sunglasses on a white desk next to a keyboard and mouse.Before reading, be sure to catch Part 1 and Part 2 of this story!

The interview questions were precisely the ones my parents had asked when we were practicing. I had a question I wanted to ask them, but I was hesitant to ask. I was worried my question would blow everything.

When the interview was over, the interviewer said, “It’s been a pleasure meeting with you!” I felt my window of opportunity start to close. But then the interviewer opened that window right back up again with five little words: “Do you have any questions?”

“Actually, I do,” I said, plastering on a smile, hoping for the best. “I’ll be honest here. Because I take the bus, I don’t feel I know the campus well enough to give campus tours…I mean, I’ll certainly help out if you need it, I’m just asking if…if it would be a problem for me to primarily work the call center shift.”

“We need more people working the call center shift, anyway,” she said. I heard the smile in her voice, and that gave me a huge sense of relief. “That’s no problem at all. Thanks for asking!”

Six days later, I got the email congratulating me on getting the job. My fingers were flying on the screen, typing as fast as I could, texting my immediate family in a group text. “I got the job!!!!!” I wrote, hoping multiple exclamation marks would help them hear my enthusiasm.

Group training sessions were next, and a lot of the initial training involved loads of paperwork. I had someone read it all to me and help me fill it all out, and then at group training we learned a lot about each building on campus and what each building consisted of : type of classes that met there, what major, that sort of thing. One day after training, one of the employers asked me to stay back for a second so she could ask me a question. I’d normally get anxious and think something was wrong, but I wasn’t worried. I felt strongly that I really fit in here, but the question she asked confused me. “Are you free at all next week?”

Free? Free for what? Before I could ask, she went ahead and explained. “I’d like to meet with you one-on-one,” she said. ”That way we can go over the website we use for the call center.”

Oh, no. The last time I’d applied for a job at a call center, the web site was the reason I got turned down for the job. The website used for that call center made calls automatically. They didn’t need a person.

“Oh, the calls are made automatically on the computer then?” I asked, trying not to sound too panicked, although internally, I was.

“No,” she replied, calmly explaining that the website they use displays the name of the person you’re calling on the screen, and they’d like to go over it with me to make sure it works with my computer and software. “and if it doesn’t, we’ll have the entire summer to work with the Disability Resource Center to fix it.”

I can’t even put into words the feeling of relief that coursed through me at the sound of those words. We met a week later and she talked me through how to use the site, step-by-step. We didn’t need any extra help. It was accessible.

So, training lasted the rest of the semester, and I have the job now. I work in the call center, making calls to prospective students to promote campus events or follow up after a recent one.

I spent my first few weeks on the job calling students who had recently toured our campus, so it was more of a survey. What was your favorite part of the tour? What could we improve on?

For now we are calling students to invite them to our open houses, and one specific call stands out. I called a student, and their mother ended up answering the phone. What is normally a one-minute call turned into maybe 15 minutes! Somehow a call about an Open house turned into her asking me about majors, if it’s possible to change your major, how easy it is to do that. This call was seriously going off-script. I hesitated a minute before answering those questions of hers. How long were we allowed to have conversations with these people? I didn’t sense anyone standing nearby, looking over my shoulder or anything, so I chanced it.”It’s pretty easy,” I said, letting her know I had changed my major.

“Oh, you did?” she replied. “What did you major in before, if I might ask?”

“I was a sociology major,” I told her. We discussed how to change majors, how simple the process was, and about my own experience attending campus events.

“Did you go to the open house?” she asked.

“I’ll be honest with you – I did not,” I said, wincing at my own response. I was promoting this event I’d never gone to. Oops. I was hoping no one heard that. I was also hoping this mom on the phone would appreciate my candor.

“I did go to the orientation for transfer students, though. There were presentations, and then we were grouped up by major and got a tour, I think. It was so long ago, I don’t remember specifics, but it was a lot of fun. I’m sure your son will really like it – I know I did.”

“You were a transfer student?” she said, excited. “Oh, where did you transfer from? My son is a transfer student, too!”

I smiled, marveling at how we’d even gotten to talking about community college instead of the upcoming open house, but not really caring about checking the clock. I wanted to keep the connection…literally. I wanted her to stay on the line. I was going really, really off script but I was helping, giving her information – and giving her hope for her son. Or something like that.

“College of DuPage,” I said.
“Oh! I’m from that area!” she answered. I laughed, then I knew I had to end this at some point. “It’s a good school,” I said. “I do need to make other calls, though, but it was really nice to talk to you. I hope I was helpful.”

“Thank you!” the mother replied. “Sorry for keeping you on so long.”

I reassured her that it was all fine. “I’d love to answer more questions, I just…kind of can’t.” I said with another laugh. “But really, it was good talking to you, and I’m glad I seemed to know more than I thought I did!” When we hung up, I felt like I had really made a difference, and that I’d really done a great job representing our school.

Some students might dread going to work after a long day of class, but I love it. It’s the highlight of my day. I love the job and I love the people I work with. I’m so grateful. I get the chance to talk to a variety of different people, represent our campus – and most of all, feel a sense of belonging.

 

Disclose my Disability on the Application Form? Looking for Employment – Part 2

Before reading, be sure to catch Part 1 of this story!man in a suit extending hand for a shake

A question on the application made me wonder whether I should mention my blindness or not. I can’t remember the exact wording of the question, but I know it asked me to explain why I’d make a good ambassador. The only way to answer that was to tell them about my blindness.

In my answer, I mentioned how I use a lot of our campus’ resources as a blind student. And for the first time, mentioning my blindness in a job application didn’t scare me. At all. I answered the other questions, checked my work, hit the “send” button and waited to hear back.

The wait was agonizing. Every few days, I’d mention to one of my friends that I hadn’t heard anything yet. They’d politely remind me that these things take time. “Relax!” they’d say. “It’ll all be okay.”

And they were right.

During breaks from class I usually read my texts or check twitter, but for some reason one day I happened to check my email instead. And there it was. An email inviting me to the Northern Ambassadors workshop. There would be activities and…an interview.

I couldn’t help it. the A ridiculous smile leapt onto my face! My parents spent the next few days talking me through the interview process, giving me advice, and practicing interview questions on me.

I woke up on the first Saturday in March — the day of the workshop — with so much excitement. You know, the kind of excitement where I probably didn’t need that morning coffee as an extra boost to keep me awake. I was awake enough!

I had a friend drive me to the workshop, not trusting the bus to get me there on time. I didn’t have to worry — I was the first to arrive. Check-in was at 12:30, and it was only 12:15.

A friendly voice greeted me as I entered. “Hi! You’re Alicia, right?” There wasn’t one hint of awkwardness in her voice. I was just another person walking around campus, just another person coming to the workshop. Maybe she knew it was me because of my white cane, but my blindness didn’t seem to rattle her.

”That’s me” I said, adding that I prefer going by Ali. “And yes, I’m here for the workshop.”

She led me to a chair, and I sat and listened as more people filed in. Some came up to me and asked how I was doing or how my day was. I felt….normal. I hate that word – because what’s normal, anyway? But the workshop hadn’t even started yet, and already there was a sense of belonging.

The workshop lasted four hours, and most of it was team building activities. The interview came at the end, and I was the first person they called. I felt this added pressure to make a good impression. I figured the first and last students would be the ones they’d remember most.

Did Ali’s interview go well? Did the interviewers remember her afterwards? Read part 3!

 

It Takes Work to Get Work: Looking for Employment – Part 1

overhead view of a college campus

Credit: COD Newsroom

The blind community talks a lot about how to get from place to place, and I’m no exception. A lot of my previous posts here have centered around travel – traveling on campus and getting from class to class, taking public transportation, using buses and trains (and, in my case, Uber). Today I want to steer away from that and talk about something that isn’t talked about too often – employment.

Why this isn’t discussed much perplexes me. As blind adults, we are perfectly capable of getting and maintaining a job. It does take some work, though. I know this from experience.

I’ve had some small jobs in the past. When I was 20 years old, I worked at the Jacksonville Area Center for Independent Living in Jacksonville, Illinois as an office assistant. During my time at College of DuPage, I volunteered at the AIM Center for Independent Living.

As you might recall from reading a previous post, I did have a job interview off-campus last year during my time here at Northern Illinois University. That interview didn’t go well, and after that my confidence was so shaken that I put the job search on hold for a little bit.

Just so you know, by “a little bit,” I mean maybe two weeks. Then I searched again.

Previous attempts at looking for jobs on campus had been discouraging. A good majority of the on-campus jobs I found were visual, with no way to adapt them. Some used software I had no knowledge of; some used software that was inaccessible; others had shift hours didn’t fit my schedule; or the job involves traveling all over campus (I didn’t know the campus well enough to walk, the bus I take around campus can’t always be on time, and employers who were asking for too many hours weren’t willing to negotiate with me).

The one thing that kept me searching for an on-campus job was this: on campus employers would be less likely to discriminate against me for my blindness. This is something I kept repeating to myself. At times it felt like I had no justification for this mantra I’d developed for myself, but it seemed like it just…made sense. And that was enough for me.

I applied for jobs in the spring and I continued to do so in the fall. I can’t recall all of the jobs I applied for, but I do remember one of them being the writing center. The thought of helping others with their writing and helping revise their papers excited me – I love writing, as you might be able to tell.

But they weren’t hiring. I applied to work at our school’s library, but never heard back. No matter how many times I reached out, all I heard were crickets. The rest of my applications are a blur.

But then one day in the spring of this year, I was browsing Twitter and came across a tweet from my school’s official twitter page promoting the Northern Ambassador position. I jumped at the chance…to get more information about it. Not apply right away. I wanted to get more information before I applied. I wanted to save myself from the effort of applying, only to be let down again.

I started out by texting my old resident advisor. I knew he’d had had this job previously, so I asked him about it. He said there were some visual parts, but he talked highly of the employers and encouraged me to apply.

So, I went for it.

Want to find out what happened next? Read Part 2 and Part 3

 

Here’s a Great Opportunity for Writers with Disabilities

someone with a journal in their lap, sitting outside on the grass.Great news! Brevity Magazine just announced they plan on publishing a special issue dedicated to disability, they’re looking for essays by and about disability, and they’ll be paying the writers!

Brevity describes itself as “A Journal of Concise Literary Nonfiction,” and Over the past year the magazine has drawn more than 13,000 unique visitors per month. The special issue, “Experiences of Disability,” will be published in September 2020, and the submission period begins next week: Tuesday, October 1, 2019. They are looking for brief nonfiction submissions (750 words or fewer) that consider all aspects of illness and disability, including pieces that explore :

    • What disability is
    • What disability means
    • How our understanding of disability is changing
    • How disability is learned during childhood
    • How disability is lived over the entire course of a life
    • How our changing understanding of disability shapes the way we experience ourselves and others
    • The lived experience of illness
    • The lived experience of disability, and/or
    • Encounters with ableism.
        The announcement says they are especially interested in essays that show readers a new way to understand the familiar, or essays that give voice to underrepresented experiences.

And here’s the very cool thing: all the people behind the scenes of this special issue are writers who identify as disabled. The anchor author for “Experiences of Disability” will be Esmé Weijun Wang, who sold her debut novel, the Border of Paradise, the same year she was diagnosed with late-stage Lyme Disease. The special issue will be guest edited by Keah Brown, Sonya Huber, and Sarah Fawn Montgomery. Brown is a journalist who was born with cerebral palsy and is the author of The Pretty One: On Life, Pop Culture & Other Reasons To Fall In Love With Me, a collection of essays exploring “what it means to be black and disabled in a mostly non-disabled and white America.” Huber is the author of five books, including Pain Woman Takes Your Keys, a “collection of literary and experimental essays on living with chronic pain. Montgomery is the author of Quite Mad: An American Pharma Memoir which explores America’s history of mental illness treatment.

For more information, check out this post on the Brevity Non-Fiction Blog. I’m pretty sure I’m going to submit something to “Experiences of Disability” myself, and I hope you will, too. So many untold stories of disability need to be heard, and we are the only ones who can tell them.

 

Beth’s Blind Date with Mr. Bates: A Downton Abbey Diary

The long-awaited Downton Abbey film is scheduled to be released in the United States today, September 20, 2019, and that gives me a perfect opportunity to share the story of my blind date with a tv star.

It all happened when Chicago’s Goodman Theatre produced a play called St. Nicholas this past winter. Tickets sold quickly, and here’s why: the star of the one-man show was the actor who played some guy named Mr. Bates in Downton Abbey.

I don’t watch much television, had never seen an episode, but who hasn’t heard of Downton Abbey? The theater was offering a touch tour before the show, and if you were blind or came along with a friend who is blind, you’d get discounted tickets.

I invited Audrey, a writer in one of the memoir-writing classes I lead in Chicago. Blindness is an advantage when teaching memoir. I can’t judge writers by how they look, I learn who they are from their stories. Audrey has written about parents coming to Chicago from South Carolina during the Great Migration. She’s been in my class so long that we’ve become friends. I know her family. Her past. Her dreams. But just when you think you know a person, they come out and surprise you. When Audrey read an essay in class last year about being a Downton Abbey fan, I was sure she was joking. I just didn’t think that would be in her list of interests.

Well, Audrey does. Chicago’s public television station, WTTW, sent her a DVD of the entire series to thank her for a donation. Watching one episode led to another, and before you know it, she binge-watched the whole thing.

Ice and wind was fierce the day of our matinee. Staff at The Goodman greeted us warmly, then warned us Brendan Coyle might not be coming out to talk with us before the show. “He has a regular stretching routine and voice prep he does before shows and we’re just not sure…”

Audrey sighed. She’d been hoping to ask Mr. Bates if he really did murder that guy. I couldn’t blame him for not bothering with the pre-show, though: I was the only blind person there.

But as we say in the biz, “The touch tour must go on.” Audrey and I were guided to seats near the front of the theater, where the props guy, the costumer, and the stage manager described what we were about to see. Then, suddenly, ta da! Mr. Bates! Brendan Coyle appeared! There he was, on stage to give us a private showing.

“You have time to talk with us?” the house manager asked, surprised.

“Sure!” the actor shrugged. “What would you like to know?”

And then we were off. The last name Coyle suits him. I could feel a little coil whirring around in his brain while he spoke from the stage. What might a person who can’t see want to know? How can I express that to a person who can’t see the stage?

The set was minimal, and when he explained moves he’d be making to help the audience conjure up different settings – sitting a certain way during pub scenes, for example — I could picture them.

Lots of staff members were there with us. My guess is they aren’t encouraged to fraternize with a big shot like Brendan Coyle? Maybe this was their chance. We all asked questions, Brendan was generous with his time. Audrey never asked him if he really murdered that man, but I had a few questions about the character he’d be playing that day.

My pièce de résistance? “You say you look ‘dashing and disheveled’ in this play. Do you have a beard?

And then, wait for it…Brendan Coyle jumped off the stage, walked over to where I was sitting, took both my hands, directed my palms to his face. “See what you think,” he offered. All eyes were on us. I felt ready for my close-up.

Brendan answered the rest of the questions while standing right there alongside Audrey and me. “Anything special you do to get ready?” one staff member asked. “You know, since it’s a one-man show and all?” Brendan was silent for a bit. “There is,” he finally said. “I put this certain fragrance on right before I enter the stage. The aroma convinces me, okay, this is it. I’m on.”

And with that, he jumped on stage, headed offstage, then back, jumping off the stage again and returning to Audrey and me. “May I touch your wrist?” I turned my arm, opened my palm, and Mr. Bates applied his fragrance there, then did the same for Audrey.

She melted.

Advance touch tours help me understand the play I’m about to see, yes, but much more important is what that does for me afterwards. For the next couple weeks, if I find myself on a bus or a bar stool or at a coffee shop talking with people who can see and attended that same play. Instead of them having to tell me all the things I “missed” because of my sight loss, I can fill them in on what I know and they don’t.

I have no intention on going to the new Downton Abbey film, but later this week, when everyone is going on and on about what they liked, didn’t like, wish there’d been more of and all that, I’ll be able to tell them a thing or two. Like what Mr. Bates’ beard feels like. Or how he smells before a performance.

 

Educating Outside the Lines: The Importance of Learning about Disability Early in Life

I am delighted to have Patty O’Machel back with us as a guest blogger. Patty is a writer, special needs advocate and mom. Her blog Parenting Outside The Lines collects and shares the stories of parents all over the world who are raising children with special needs, and her guest post today lets you in on another “Outside the Lines” project she launched last year.

by Patty O’Machel

Patty and her daughter outside on a sunny day

Patty (right) and her daughter (left)

“Acceptance” and “understanding differences” are the hot terms of the day, and used with abandon. But what do they really mean in today’s culture? They could speak to the way immigrants are seen in our country. They could speak to the LGBTQ community, and how the way in which people identify themselves is often different then the way they are “supposed” to present to the world.

As for me, I look for understanding of disabilities and abilities. Simply put, I want children with all abilities to be accepted and seen for their unique gifts, as varied as they are.

As the school year begins, I am gearing up to bring my company, Educating Outside The Lines, into more schools in our communities. I want to teach children that their peers with disabilities and differences can do amazing things. Last year, Educating Outside The Lines programming reached over 7,500 children with the message of understanding and accepting differences. I want to reach more!

Focusing on teaching kids about those things that may be different in their peers, creating an environment of acceptance – it all helps to bridge the gap of isolation. Rather than being afraid of differences, kids start to understand and embrace them.

My Educating Outside the Lines program uses a hands on approach to learning. Kids get to use wheelchairs, and touch prosthetic legs and arms. They get to use braillers and learn sign language. They learn about the disabilities you cannot see, like dyslexia and ADHD, and how struggles in one area can foster super powers in others. Children learn that everyone has things they are good at and struggle with, and how things like wheelchairs, communication boards, service dogs and braille books are just tools people use to help them do the things they do.

Children who learn acceptance at an early age take these lessons with them into adulthood. Instead of fearing differences, they strive to understand, and if you think of it, bullying stems from a lack of understanding, so teaching children to understand and appreciate differences can help combat bullying.

Let’s face it. Every one of us is different and unique. We are all good at some things, and boy, do we struggle with others. And everyone we meet and interact with everyday, from friends to coworkers, also have differences. Our kids are living in the same world. They will have classmates and friends who have differences and disabilities. They will have teachers, doctors and coaches with disabilities and differences. If we consciously teach them about these differences when they are young, then we are creating a community of people who embrace others and don’t let fear of differences dictate their lives.

Through dynamic speakers, simulations, and hands-on learning and activities, students at the schools we visited last year were able to learn about all sorts of disabilities and abilities. For example, students who played wheelchair basketball learned specific skills necessary to excel in that sport. Same goes for the athlete who had the kids touch the prosthetic leg she uses when running marathons and compare it with the prosthetic leg she uses for everyday tasks. It all left kids thinking about using different tools for different needs. Coordinated learning on the other side, where students did an Americans with Disabilities Act compliance study of their school and community really brought the message to life. Offering students different views of disability gave them an opportunity to witness the balance of ability and what people can truly do given the right tools to succeed.

At the start of this school year, let’s teach our kids to see the world a little differently. The lessons about reading and math will go with them into adulthood, but let’s also teach them to truly understand and accept their peers with different abilities.

If you would like to see Educating Outside The Lines in action, this link has a short video of programming.

 

Life can be scary when you can’t see the bad guys

an empty sidewalk at dusk, a brick wall to one side and trees on the otherEarlier this year I wrote a post about an ongoing Martial Arts Self-Defense course offered by Easterseals Massachusetts. Now I’m thinking more seriously about taking a course like that.

Let me explain. My Seeing Eye dog Whitney will be ten years old soon. She sleeps more than she used to, she walks slower when leading me through Chicago, and every once in a while she loses focus. She was leading me home from downtown Chicago recently when I sensed her veering ever so slightly off the sidewalk. Not toward the street, but in the other direction.

The sounds of silverware and people chatting and laughing was a big clue. Aha! We’re in an outdoor plaza. Whitney must have smelled some good food and couldn’t resist.

I stopped a moment to get my bearings, and when a man came up and asked if I needed some help, I said yes. “I got off-kilter there for a second,” I told him, pointing in the direction I thought was south. “Am I still on the sidewalk heading south?” He said I was, so I picked up Whitney’s harness and gave her a command. “Whitney, forward!” I said, and she pulled me forward.

But the man followed me.

”Where are you going?” he asked. “Do you live alone?” He told me he was single, kept following me, telling me how strong he is, how tall, how good looking, how much he could help me. When Whitney stopped at the next red light, the pedestrians waiting alongside us were a comfort, but I couldn’t stay there forever.

When the light turned green, I focused on Whitney as she guided me across the street. ”You made it,” the man said. Oh, no. He was still there. He was still following us. I tried to stay calm, but inside I was panicking. C’mon Whitney, this is real. You’ve gotta get us home. I encouraged her to hurry along, but instead of continuing forward, she veered again, this time leading me to a door.

“That’s the bank,” the man following me said. “You don’t want the bank.” He was right. I did not want the bank. I’d never ever been to that bank. I didn’t even know there was a bank there. I just wanted to get home.

Just as I was about to scold Whitney for her mistake, a blessed thought occurred to me. “Oh, yes,” I said, loud enough for the man to hear me. “The bank. Good girl, Whitney!” I opened the door and left the man behind.

Inside, I stood in the middle of the lobby catching my breath and listening intently to the door I’d come through. I didn’t hear it open again. The man must not have followed in after me.

Did Whitney know what she was doing, leading me to that door when she did? I think yes. Her age may be affecting her physical work as a guide, but mentally she still knows ways to keep us safe. The lobby was small, and it didn’t take too long for a guy working there to notice the blind woman with the Seeing Eye dog there. “May I help you?” I had no idea what bank I was in, but I figured I didn’t have an account there, so I told him so and explained. “Some guy out there was following me, and…” I gave him the whole story. He asked if I wanted to sit down. “No,” I said. “I just want to shake that guy off my trail and get home.”

As it happened, this guy was a bank executive. He was off for a business meeting in a fancy building just south of there, the same direction I was going. “I’ll walk you,” he said. “Just give me a minute to gather my stuff.”

The exec told me his name, gave me his card, and walked Whitney and me two or three blocks in that direction. He looked behind us along the way, assuring me no one was following us any more. When he had to head in for his meeting, I felt confident Whitney would get me the rest of the way. She did, and I’ve never been so happy to put my key in the door and be back home.

A day or two later I heard from a young friend who is blind and had a run in with an Uber driver. Sheer coincidence, or is something going on out there? Her ride started out fine, she said. “We talked about technology, blindness, school, all the normal small talk conversations I have with drivers. And then…”

The driver askd my young friend if she was seeing anyone; whether or not she had any dating experience, being blind and all; would she consider going out with him. When they got to her destination, the driver suggested that maybe he could take her to a motel sometime.

“I flew out of that car like it was on fire!” she told me. Once inside, she reported the driver and spoke to the Uber critical safety response line.

I’ll end here with another coincidence that I think is more than a coincidence. I just heard about a self-defense course for people who are blind or have visual impairments is starting today in Chicago. “If you feel vulnerable when traveling with your white cane or guide dog, consider taking the 1Touch Beginner course. This course teaches self-defense moves designed specifically for people with vision loss. You will feel more secure knowing what to do if someone were to move aggressively towards you. It also helps with those overly helpful do-gooders who mean well, but may get you into more trouble than not.” Sign me up!

 

Don’t Miss Out on these Discoveries During IEP or Parent Meetings

I am delighted to have Patty O’Machel back with us as a guest blogger. Patty is a writer, special needs advocate and mom. Last year Patty launched a business called Educating Outside the Lines, a disability awareness project that stems from her core belief that “kids with disabilities are just kids.”

by Patty O’Machel

Patty and her daughter outside on a sunny day

Patty (right) and her daughter (left)

It’s that time of year, when the days of swimming and sleeping in rapidly turn to school supplies and meeting new teachers. For my typical kids, this looks one way and has its own fears and uncertainties and anticipation. But for my daughter with a disability, and for me as her parent, it has a very unique set of stresses.

We are not only meeting her new teacher or teachers, but also a host of ancillary people who all have an investment in her school day: aides, resource teachers, physical therapists (PTs), occupational therapists (OTs), and technology professionals. Every year we are faced with not just one new teacher, guiding her day, but a host of disciplines and professionals whose jobs intersect and complement one another for my daughter’s overall success. There is a team to work with her, in and out of her classes and life all day, every day.

As a parent, this whole coordinated dance can be incredibly overwhelming. We head it off by starting the year before, arranging meetings and planning sessions, but it still can feel like you, as your child’s head CEO, are conducting an orchestra when you can’t even read music.

I think back to being a newbie parent, when I sat at my kitchen table with all of the Early Intervention professionals around me, worrying about whether they liked the muffins I set out while also trying to focus on every word and acronym they said about my daughter — I felt like I had been dropped into a new country and didn’t know the language. I remember clearly feeling my heart break a little more each time, as they went around the table talking first about all of her strengths…and then about each of her weaknesses.

I, like all special need’s parents, know this drill. You can’t actively listen to the strengths when you know the other shoe is going to drop, and the weaknesses are coming at you. The gap between my daughter’s strengths and weaknesses grows wider every year. By the time we got to 8th grade, I asked if we could just start with the weaknesses first, and then talk about the areas of growth.

I am not a teacher, an educator, a physical therapist, or a reading specialist. My education and background professionally did not prepare me for this role, but I still do it, and I think I do it really well. I may not have a degree in special education, but in many ways, I consider myself an expert!

So with that expertise in mind, I propose a new way of doing parent meetings and IEP’s. Let’s start with the negatives, and then spend the rest of the meeting talking about areas of strength in my child and how we are going to foster those super powers and stoke the flames so he or she can be successful.

I recently met a young man with dyslexia who was reading with the second graders when he was in fifth grade. It wasn’t until a special teacher saw the magnitude of things he “could” do, and began to foster those unique strengths, that he began to be seen as the brilliant young man he is, gifted in robotics. For too long he had been seen only for his weaknesses. Focusing on his host of talents and super powers gave him the tools he needed to succeed in his unique way. He has just started his first year at a prestigious university with a full-ride scholarship, based on his strengths, not on his disability.

It took a teacher to look at this young man’s path to success differently, as unique as he was, and foster that flame. It took what is a rare approach in education, looking at all a child can do and not just what they cannot do. I know that educators, administration, and ancillary professionals are more stressed and busy in our schools than they have ever been. Trying to teach a classroom of 20-plus students and still see the unique light in each of them is an almost impossible task, but the students with the unique superpowers are often the ones who go unnoticed. It is difficult to differentiate a child who cannot keep pace with the pack and needs their own individual route to the same destination, yet each of our kids, disability or not, deserve to find that path. All kids should get the same shot at success in their own ways.

My dream for this school year is that teachers will start to look for the cape, the superpower, the hidden spark in kids who, from the outside, look incapable. That they will be willing to take the road less traveled with our kids and truly see how their unique path can lead to success.