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.

 

When the Unexpected Happens While Using an Uber with a Disability

taxi-minivanSometimes I like to share my travel stories with other blind individuals. It gives us a chance to laugh off the mishaps that occur in day-to-day life — or, alternatively, it gives them permission to share their own stories, too. Conversing with other blind people about our experiences is something I really enjoy. The events can be totally unexpected, and it’s comforting knowing we are not alone in these kind of experiences.

One recent Saturday morning, I was up bright and early. I wanted to get out of the house for a bit and do some reading at Dunkin Donuts. I used Siri to ask, “What time does Dunkin Donuts open?” Siri confirmed that it was already open. Next step? Using voiceover on my iPhone to schedule my Uber. Once the Uber app gave me my driver’s name, I pasted a text I have drafted in my notes on my phone:

Just so you know, I’m blind so I won’t see your vehicle pull up. Please come get me when you arrive.

This note ensures that I am getting into the right vehicle: the driver will address me by name or introduce himself after approaching me. And so was the case on that early Saturday morning. The ride was short, and when we arrived, the driver offered to lead me to the door.

“That’d be great, thanks!” I replied. “I should be good from there.” I didn’t memorize this layout to the Dunkin near my parent’s house the way I did with the one in DeKalb (that’s where I go to college) but I felt confident I could find the counter to order. I can usually find a Dunkin’ donuts counter by listening for clues — either people ordering their drinks while I enter, or the familiar sound of the card machine.

So my Uber driver and I approach the door, and I pull on the door to open it, and…it wouldn’t budge. That led to an interesting back-and-forth between me and the Uber driver.

”Am I…supposed to push this? Am I pushing on a pull door again?” I asked, laughing. Pulling on doors I’m supposed to be pushing is more common than he realized.

The driver laughed, too. “No, you’re doing it right,” he assured me. “But it’s locked.”

“It is?” I said, surprised. “My phone said it’s open.”

Pause.

I imagined the driver was looking around to see if there was a sign on the door. When he said the drive-through was open, I contemplated briefly. I really was counting on enjoying the coffee shop atmosphere for a while. There was another Dunkin Donuts pretty close, But that would involve taking another Uber back home. We were already here.

“Would you mind taking me through the drive-through?” I asked. “I mean, if it isn’t too much trouble…?” I felt confident he wouldn’t leave me standing there, but I never want a driver to feel obligated. Who knows? Maybe the line of cars was long? I understood if, for whatever reason, he didn’t want to spend his time taking me up to the drive-through. .

His reply came immediately, and there was no trace of annoyance. “Sure, I can do that.”

Truth is, I’ve had driven through a drive-through a few times before in an Uber. I hadn’t known you could actually do that until one day, on my routine trip to Dunkin, my driver asked me if I was going through the drive-through or going inside. “I’m going inside,” I told him. But then, as an afterthought, I asked, “But, for future reference, if I did want to go through the drive-through, how would I do that?”

He told me that I would just add it as a stop, and add my dorm (or where ever I was headed next) as my destination, and let the driver know I was going through the drive-through instead of running inside.

So, I did that. A few times, actually. Most of my drive-through experiences came before night classes, and I went through the drive-through that morning the Dunkin lobby was closed, too. The driver laughed about what an adventure this was so early in the morning, and after we’d determined the main door was locked, he offered perfect sighted guide on our walk back to the car.

As we headed to the drive-through, I asked the driver if he’d mind ordering for me when we got there. “I don’t know where the speaker is…I kind of, well, can’t see it.”

Note: it is not uncommon for me to lighten the mood with some blind humor — or a “blind joke” as I often refer to them.

But back to the story: my driver laughed again and agreed. As I type this now, I realize that since the microphone is typically on the left side, I could have just moved over in the back seat to that side and spoken into the microphone, but I just didn’t want to risk my aim being off. I truly just didn’t feel confident enough. Maybe this will be something I ask sighted friends or family to help me with first before I try it.

Anyway, since it was so early, there was no line. We ordered. “Thank you,” I told him, and just like that, I had my favorite drink in my hands. “What a morning, right?”

We learned that Dunkin had some unexpected maintenance going on, which is why the lobby was closed. And that is exactly why I have drivers lead me to the door rather than just dropping me at the curb and driving away. I guess you never know when something like this could happen!

Being blind, I am learning to just take the mishaps as they come and laugh them off, but I’m still working on this.

I mentioned in a previous post that I’m not a patient person. But these small events — the detours we have to take in life — are stories worth telling. Taking these detours with friends and family who exude nothing but patience and good conversation makes the story even better

 

You Tell Me: Is There a Completely Reasonable Reason to Allow Miniature Horses on Planes?

IdcardTravel everywhere you go with the help of a guide dog, and strangers will feed you an earful of stories about all the other service animals they’ve read about. Helper parrots pecking at shoppers in stores, comfort pigs going crazy on airplanes, a therapeutic rat that quells anxiety in his owner, you name it.

The New York Times published an article about miniature horses last week after The Department of Transportation (DOT) released new formal guidance regarding animals on planes that specifies the three types of service animals prioritized for travel: cats, dogs and miniature horses. Now strangers in elevators and at street crossings are asking me about “guide ponies,” too. From the article:

Shortly after the guidelines’ release, a photo of a small ginger horse, squeezed in front of a woman’s knees, circulated on the internet. It appeared atop numerous articles, without any sort of caption, only adding to the questions raised by the travel document: If flying horses are so common, how come I’ve never rolled my carry-on past one? How could that photo be real? And even if it is, why would you ever want to squeeze a horse in front of a seat like that?”

The article shows a picture of a couple sitting in bulkhead seats of an aircraft, the leg room in front of them occupied by a pony who is standing and lodged between their kneecaps and the bulkhead wall.

After interviewing a blind woman who uses a pony as a guide, the reporter spelled out the advantages of working with a miniature pony, noting that they are:

  • mild-mannered
  • fast learners
  • known to have nearly 360-degree vision
  • able to work three times as many years as a guide dog, thanks to a longer life expectancy

I can understand that last advantage. My own Seeing Eye dog, Whitney, is nine years old now and has lost the fervor she once had for her work. My husband Mike and I were with friends the other day, and when Mike was explaining Whitney’s upcoming retirement to them, he said, “You know, she really loved working when she was young.” Our friend responded with an understanding laugh. “Hey, so did I!”

Anyway, back to this horse thing. Horses can work longer than dogs, yes, but that’s not enough to convince me to switch to a miniature horse as a guide. Before the end of this year, I’ll be heading back to the SeeingEye to train with a new young dog.

Seeing Eye pioneers worked long and hard to open the doors and give our dogs public access. At risk of being labeled as a species-ist, I wish the DOT had limited the definition of service animals to dogs. Specifically, dogs who are public-access trained, as well as individually trained to do work or perform tasks for a person with a disability.

The description of the photo with the New York Times implies that the couple giving up their leg room is traveling together. I often fly alone with my guide Whitney, who knows not to take up my neighbor’s leg room on a plane. A 57-pound Yellow Lab/Golden Retriever cross, she was public-access trained at the Seeing Eye to sit with her bottom under the seat in front of me, and her head on my feet. On trains and buses, she sits under the bench seat. At restaurants, libraries, conferences and the like she sits at my feet, under the table.

The New York Times article reports that miniature horses stand at their owner’s feet throughout each flight. I wonder. If you are being guided by a miniature pony, Do they stand on buses, too? On trains? At movie theaters? During live performances? I have long believed that the phrase “reasonable accommodation” goes both ways. Is it reasonable to ask the person who landed that seat next to you to give up their legroom (or the entire seat, if necessary) to accommodate a pony?

The woman interviewed in the article said she “usually buys flights on short notice, calling the airline the day before to give a heads up that she will be traveling with a horse.” In the past, some airlines have told her there wouldn’t be enough room, but she is hopeful the new guidelines will discourage such behavior from here on out.

She has come up with a “tidy defecation setup” for long flights, and when she senses her miniature horse needs to go, she signals the horse to go into a deodorized bag. “I don’t want my accidents to be someone’s first impression,” she told the reporter.

The story also reports that some airport officials have asked the woman traveling for an official identification card for her miniature pony, but “unaware of any organization that offers such a thing, she and a friend eventually made a card themselves.” The New York Times article I am referring to in this post is titled “The Completely Reasonable Reason People Are Flying With Mini Horses,” but I’m not sure I get it. What “completely reasonable reason” is she talking about?

 

The Department of Transportation Issued New Guidelines for Air Travel with Service Animals

Photo of Whitney in harness.

Whitney’s graduation picture is on her Seeing Eye i.d. card. (Courtesy The Seeing Eye.)

Summer is drawing to a close, but I have one more trip planned before it ends. This weekend, I’m flying to Minnesota to visit relatives and I’m traveling alone with my Seeing Eye dog. On Sunday morning, Whitney will be guiding me through TSA security at Midway Airport in Chicago, to the gate, down the jetway, and to our seat on the plane.

When I was booking my flight last week, I discovered the U.S. Department of Transportation (DOT) had just issued guidelines concerning traveling by air with service animals. The guidance issued by DOT does not change the current law or regulations concerning air travel with service animals, but DOT is expected to issue new regulations for traveling with service animals in the not-too-distant future. Look for another blog post here when that happens.

For now, though, the Air Carrier Access Act and corresponding regulations are still in full force. The new guidance, called “Final Statement of Enforcement Priorities Regarding Service Animals,” tells us where DOT will focus its limited enforcement resources in response to complaints it receives now, under existing law.

For example, DOT makes it clear that it will not tolerate airlines imposing breed restrictions on passengers traveling with service animals. It also will take action against airlines that require people with guide dogs to notify them ahead of time that they are traveling with their dog (I always try to let them know anyway, just so they won’t be surprised). On the other hand, DOT states the following:

We do not intend to take action against an airline for asking users of any type of service animal to present documentation related to the service animal’s vaccination, training, or behavior, so long as it is reasonable to believe that the documentation would assist the airline in making a determination as to whether an animal poses a direct threat to the health or safety of others.

Airlines should only be asking for this documentation in specific cases where they need information to help them determine if an animal is a threat. Whitney, my nine-year-old Golden Labrador Retriever cross couldn’t look threatening if she tried. I am not expecting any problems as a result of this guidance, but who knows how the individual airlines are going to interpret this? And so, I’ll add “Whitney’s complete vaccination records and Seeing Eye ID” to my long list of things to remember to bring in my carry-on Sunday. I don’t want to risk missing my flight!

 

7 traits that help when you’re blind and going to college

Recently when we were talking about my goal of trying new things and going to more campus events this semester, someone said something interesting that resonated with me long after it was said: “People are scared to do things even when they can see. And then if you add your situation on top of that, it does make it a little more challenging. But it doesn’t mean you can’t do those things.”

This is my last semester at Northern Illinois University, and those words made me think of college as a whole and left me reflecting on my entire college experience.

I’ve had challenges because of my blindness. Let’s not sugar-coat that. Being blind does make college life a little more challenging. But this isn’t going to be a negative post where I talk about the negative aspects of being a blind college student. Instead, I want to do just the opposite. In this post I’ll look at the positives, the things I’ve learned. And who knows? Maybe there’ll be things you haven’t thought of!

  1. I learned a lot about self-reliance. When I was in high school (and even when I was at community college at College of DuPage) I was able to visit the campus before classes even started to get oriented. At Northern Illinois University (NIU), I have never had that luxury. The campus is a bit of a commute from my hometown for something like that, and orientation and mobility (O&M) isn’t provided by NIU’s Disability Resource Center. That means I have had to learned the routes to my classes by showing up early enough to wander the buildings myself. On the occasion I wasn’t able to show up early enough, I had to ask for directions and focus on exactly where I was, what turns I was making, and so on. Eventually I was able to memorize the routes.
  2. I learned to be resourceful. I take the bus from class to class, but sometimes the bus was late. Sometimes I had another obligation with no way to get there. Sometimes I resort to asking friends, but often times I just use Uber. My friends have their own schedule. Why should they go out of their way to lead me somewhere when I could find other ways of doing it? I learned to use other resources.
  3. I learned a lot about patience. This is still a work in progress. I am not the most patient person — I’ll admit that. But being in college has taught me that, as a blind person, I spend a lot of time waiting. Waiting for the bus, waiting for someone to ask someone else where a certain room is, waiting for an Uber, waiting to receive my list of accommodations for my professors. Things take time, and I learned early on that I needed to accept that.
  4. I learned not to rely on people too much…because they can’t always be there. I don’t mean this in a negative sense, like we don’t talk anymore or anything of the sort. I mean they’ll drop out, switch to another college, or they’ll graduate. I’m starting my last semester with very few people I know. My close friends graduated, Joe doesn’t go to school here anymore, and I lost touch with a lot of friends from past semesters.
  5. Again, I’ve learned a lot about self-reliance. While I do accept help once in a while, I know not to rely too much on it. When Joe went to school with me while we were still together, he helped me navigate the residence hall. My friends ran through routes with me when I’d get lost and asked them to teach me an alternative route, and they’d take me off campus to explore sometimes, too.
  6. I learned that in the end, it’s on me. It’s up to me to do these things, make new friends, and figure it all out.
  7. I have to work twice as hard. In high school, a teacher told me that as a blind college student, I was going to have to work twice as hard as everyone else. I didn’t know how to take that when I first heard it, but now I know it’s true. I get extended time on tests, I needed tutoring one semester, and sometimes, I need help from the Disability resource Center just to get assignments done. Let’s be honest. When you can’t see, Things take longer.

So yes, being blind can sometimes make it a little more difficult, but it certainly doesn’t make it impossible. I’m very excited to be going back to school in a few weeks and making the most of my very last semester.

 

Inclusion is a beautiful concept, but…

I am delighted to have Patty O’Machel back with us as a guest blogger. Patty is a writer, special needs advocate and mom .

by Patty O’Machel

Patty and her daughter outside on a sunny day

Patty (right) and her daughter (left)

As a mom, I think about inclusion a lot, and the many variations this word takes in my daughter’s life. As a simple explanation most people think of inclusion when it comes to school and their child’s academic life. School systems and advocates throw this word around a lot, and most fall on one side of the fence or the other when it comes to their feelings on whether kids with disabilities should or should not be included in the typical classroom.

I have seen firsthand the way this looks with my own child, and with other children with disabilities. My daughter is in typical classrooms throughout her whole day at school, but I have seen how some kids with disabilities are shuttled in and out throughout their school day and the strange way this looks for them. They don’t get the same consistent instruction as typical kids, and they get bits and pieces of the whole learning experience. Somehow they are expected to keep up with the lesson plans, and the concept being taught, and make connections with peers — all while not being a real part of the group as a whole. But there also seems to be a pervasive hidden attitude of “that’s ok, because they have disabilities and they wouldn’t be able to keep up anyway.”

This whole arrangement doesn’t seem to benefit the child learner. It may check a box on the IEP, but is it the best situation? Does it give that child the most complete learning experience?

I would say “no.”

My daughter is in class with typical peers throughout her day, but I would have to say that inclusion doesn’t often look like the postcard picture of peers all working together and her being included. She uses a wheelchair, so often in crowded classes she is off in the back or on the side, she is not at a regular desk, and this alone can make things isolating.

She uses her stander in some classes in order to get some stretch to her legs, so that means she is rolled in and “stands” in the back. Not a part of the group, but “in” the classroom.

When they do testing, she is removed to a quiet space or one where her scribe/aide can write or type her work. She works better in smaller groups, and has an easier time sharing her thoughts and being able to keep up — but often these situations make inclusion more difficult.

This term is commonly used speaking only about school and the academic environment, but school is not the only place where kids with disabilities can be included, or excluded. My daughter has a wonderful group of true friends. She loves them, and they love her, too. She has a blast when she is with them, but sometimes that inclusion can be hard. When they “hang out” at one of their houses, those houses are not always accessible. They might have stairs to climb to get inside, or the girls might want to hang out in their rooms or basement, both of which are off limits to my daughter. Or they will go up to town and get food or frozen yogurt, fun if you can walk up to town and get around on your own, but not if you use wheels.

My daughter’s friends never exclude my daughter, but the give and take of normal friendship and interaction is difficult when you are not there.

In order for my teenager to be included, I have to essentially be included as well to manage the logistics — and what teenage group wants a mom hanging around with them all the time?

Inclusion is a beautiful concept. To allow everyone into a group, to be equal and to have everyone have a place and a voice. The concept is lovely. The logistics are often not. Still, as special needs parents, we fight tooth and nail to have our kids be included. We want them to have the same educational experience and to achieve their true potential in everything from friendships to sports to algebra.

As a parent, I sometimes think that my view of inclusion and the school systems’ views are not always aligned. But it is something to strive for and to fight for, and to use our collective voice to have our children know true inclusion in every area of their lives.

 

Inclusion: It’s More Than Just Meeting the Rules of the Law or the Policy

Liz sitting at top of a massive sand dune at Sleeping Bear Dunes in Michigan looking down at the landscape below after just having crawled the entire way up. Her grandpa and aunt are standing behind her after providing some assistance with the climb.

Liz sitting at top of a massive sand dune at Sleeping Bear Dunes in Michigan looking down at the landscape below after just having crawled the entire way up. Her grandpa and aunt are standing behind her after providing some assistance with the climb.

Guest blogger Liz Davis lives in Chicago and is an UX Designer at SPR. She has used a wheelchair all her life, and her experience in dealing with the obstacles of an environment lacking accessibility has granted her a useful perspective on inclusion. We are so fortunate to have her share her story with us today.

by Liz Davis

Inclusion is often thought of as a positive word, a word that is used to inspire connectivity, community and diversity. But inclusion means something different for me than it does for my neighbor.

Growing up as a wheelchair user, I was introduced to the idea of inclusion early on in life. Inclusion was my parents not stopping me from crawling out to the backyard to play in the dirt just like my siblings. Inclusion was my mother fighting with our local school district to get a wheelchair lift so I could attend sixth grade on the upper floor instead of them moving the entire grade because of me. Inclusion was going with my youth group to volunteer to New Orleans for volunteer hurricane relief despite the extra effort needed with a wheelchair.

I’ve been fortunate to have a lot of inclusion in my life, but it is just as important to talk about the subtle exclusions that come with being disabled — especially the exclusion that occurs when inclusion is intended, the sort of thing that can happen when trying to meet accessibility standards.

College was the first time I really started paying attention to these exclusive situations. I attended a university in an old Catholic college in Iowa, and the school’s buildings had been built long before the ADA. My dorm room was accessible, I could live independently, and the bathrooms were sufficient for me. By standards of the law it was an inclusive, accessible experience.

On the other side of the coin, the dorm buildings many of my friends lived in did not have elevators, and of course they lived on the highest floors. Technically they could have just come to my dorm to hangout, but social experiences are not so structured. I lived in a single dorm, not the large suite my friends did. They would help me up to the higher floors if we planned out a time to meet, but what if I had to use the bathroom? The feeling of not being able to freely leave when you’d like is not an inclusive experience either. I’d have to find a gap in the socializing to ask if they could help me downstairs, an awkward situation to say the least. Without an elevator available, just hanging out and socializing naturally couldn’t happen. I’d often feel left out.

I never blamed my friends, but this is where exclusion hurts the most. When you can’t speak up or change anything because technically the accessibility need was met. It’s not a reasonable accommodation to put an elevator in every single dormitory for one student in a wheelchair.

To me, inclusion is considering the social aspects of an experience in combination with the physical. It’s more than just meeting the rules of a law, or policy. Inclusion is providing the environment for someone with a disability to fully experience their lives.