Remembering Dr. Martin Luther King: The Path to Positive Change

As we remember Dr. Martin Luther King Jr. and the vital work he did and continues to do through his legacy, I would like to reflect on the hope that change can bring.

Change is not something that just happens automatically, but it can happen in the wake of pain. Over this past year, this country experienced the unimaginable with the pandemic, with hundreds of thousands of people losing their lives. The divisiveness in this country was highlighted over and over, with the death of George Floyd, Breonna Taylor and countless others, and culminating in the reprehensible actions taken at the U.S. Capital.

But in these dark moments, we also see people engage in acts of love that make the unbearable bearable and let each of us know we are not alone in our fear or grief; social distancing does not mean disconnection from each other, whether it’s connecting through Zoom with your friends in quarantine or holding a virtual vigil for those we lost.

If you are feeling powerless right now, remember that Dr. King once said, “If I cannot do great things, I can do small things in a great way.” Every action we take to help each other, and to be kind, sets us forth on a path to positive change and brings hope for a brighter future. Through self-reflection, community outreach, or other acts of love, we can be a beacon of that hope we so long to feel again. Let’s listen to Dr. King’s words and put them into practice every day.

 

Speech Software, Smartphones: Why Braille Still Matters

Louis Braille was born on January 4, 1809. His birthday is now annually recognized as World Braille Day, and January is Braille Literacy Awareness Month. I have long been aware of World Braille Day, but it’s only recently that I learned that the entire month is dedicated to Braille — how cool is that?!

Picture of a letter written in Braille.

A page written in Braille along with standard characters and words.

Though I don’t use Braille as often as I used to, it’s still a part of my life. I first learned Braille when I started preschool at age 3. My memories of this are foggy at best, but I do remember the first Braille book I read was called Go and Do. It introduced me to contractions, which are letters or symbols that are used to substitute for actual words. For example, the letter G by itself stands for the word “go.” Braille has a symbol for the word “and,” similar to how in print, you use the symbol “&” to mean “and.” The letter D by itself stands for the word “do.” This makes typing easier, as you do not need to type the entire word.

I read a lot of Braille in my school years. As far back as middle school, I remember textbooks being several volumes. Braille books are heavier, and the dots can take up so much space that the average print textbook is split up into several volumes when converted to Braille. This made for some accommodating in middle and high school — for my school presentations, I often needed to know ahead of time what pages we’d be working on so I could see if I needed to retrieve another volume of the textbook. If this concept confuses you, don’t worry; it confused my teachers when I’d try to explain it. They’d ask, “Doesn’t your textbook there just have all the pages like ours does?”…not in a patronizing way, but out of simple confusion.

Braille books can be very expensive, especially when they come in several volumes. So, you can imagine that this is why, when I’m reading books for pleasure at home, I prefer to listen to audio books. I read a lot of books (I love reading!) but after reading Braille for quite a while, my fingers can actually get tired. Sometimes, they hurt!

When I went to college, most of my assignments were done electronically. I could read textbooks using VoiceOver (the speech synthesizer on my iPhone), but I often took tests in Braille. I was given the option to either have them read tests to me in person or provide them to me in audio format. If I chose the audio format, someone from the Disability Resource Center would record the exam, I listen to the recording and write my answers in Braille. Later, my Braille answers would be transcribed into print for the professors to grade.

Audio format seemed like it took too much time, so I arranged to have my exams provided in Braille instead. The professors simply emailed the exam to the Disability Resource Center and they’d provide it in Braille. That way I wouldn’t have to rewind the audio or ask someone to re-read something if need be — I could simply use my fingertips to reread the question if I needed to.

To take notes in class, I’d use a Braille Note Apex (it essentially looks like a screen-less laptop). Similar to how words appear on the screen when you type on a laptop, the words would appear at the bottom on a Braille display. I could have used my laptop to take notes, but I would’ve had to use headphones so my classmates wouldn’t hear the screen-reading software on my computer. You can see the problem there: it’s hard to hear a class lecture with headphones on! Using just one earbud in my ear meant I might be too focused on the speech software and miss something the professor said. So I went with Braille.

As you might know from previous posts, I graduated from Northern Illinois University in December 2019. Most people think of Braille as a way to read books, but now that I’m done with school, I use it in ways you might not think of. We used my Braille writer — a very large typewriter of sorts — to label the cards so I can play card games with my family. I use Braille to read signs that verify bathroom signs or room numbers (though this was more applicable in college, but I’m sure it will be useful again post-pandemic, when I get out and travel more). Another example: I sometimes use sound clues to locate restrooms myself when alone at a coffee shop, and I check to see if there’s a Braille sign near the door to indicate it is the women’s restroom.

A common concern among parents is that after a blind person is through with their education, with everything being electronic these days, Braille skills will diminish, and a person may not read as well. But Braille is still there and still useful, from reading signs to playing games to even writing an old-fashioned card if you want to.

One of my (sighted) friends learned Braille and every year she writes my birthday card in Braille, and I’m grateful that she taught herself Braille and that I still use it outside of school.

 

Keep This Link to DOT Complaint Form Handy: New Service Dog Rule Starts Today

Beth with her fifth Seeing Eye dog, Luna. It’s their Seeing Eye graduation photo, taken outside the Seeing Eye School in Morristown, NJ in January, 2020Early in December 2020, I wrote a blog post about the final rule issued by the Department of Transportation (DOT) on traveling by air with service animals. The rule was published in the Federal Register a few weeks later, which cleared the way for it to go into effect today, January 11, 2021. From now on, passengers have to pay to have emotional support animals travel with them.

Service animal organizations – including the Seeing Eye, where I trained with my service dog Luna – are pleased with certain aspects of the rule, including the definition of service animal as “a dog, regardless of breed or type, that is individually trained to do work or perform tasks for the benefit of a qualified person with a disability.” But one thing about the 2020 ruling many service dog organizations are not crazy about is the new form DOT is requiring service-dog users to fill out before traveling.

Starting today, airlines will be required to have the Service Animal Air Transportation form on their web sites, including a version accessible to people who use assistive technology – the screen reader I am using with my laptop to write this article, for example. Service dog organizations say they will be watching closely as airlines begin to implement the new rule. Many view the requirement to fill out a special form when flying as an unnecessary and unfair burden to impose on qualified service dog handlers.

The Department of Transportation can only take action against an airline if individuals exercise their right to file a complaint. Qualified service dog handlers who encounter barriers to air travel – including inaccessible forms – are encouraged to file a Department of Transportation Civil Rights complaint form found online here.
And if it helps to have the link all spelled out the DOT civil rights complaint form can be found online at: https://www.transportation.gov/airconsumer

 

A New Way to Help People with Disabilities Keep Their Jobs

A young man serving a drink while working as a baristaI’ve written a fair amount of blog posts over the years encouraging employers to hire people who have disabilities, and I’ve also filled out plenty of surveys about what it’s like to be a person with a disability looking for work. This is the first time I’ve heard of a survey asking employers to share their experiences hiring and/or managing people with disabilities: The Shirley Ryan AbilityLab (formerly known as the Rehabilitation Institute of Chicago) is currently conducting a survey to learn what helps people with disabilities keep their jobs. They say survey results will help guide services to people with physical disabilities to improve employment outcomes. From their press release:

The 30th anniversary of the Americans with Disabilities Act provides an opportunity to look at the progress we’ve made as a nation, and to identify issues that require our continuing efforts.

As a person with a disability who has enjoyed many years of employment here at Easterseals, I’m glad to hear there is interest in discovering ways to help me and other people with disabilities keep our jobs. I’m very interested in what might be learned from this survey, and I know I’m not alone. If you are a qualified employer or manager, maybe time off at home during the holidays will leave you with 30 free minutes to fill it out. Please share the link and QR code with your business networks as well — thanks.

 

Rebuilding Our World: The Wisdom of People with Disabilities Can Help

A train passing byI happen to turn the radio on this past weekend just in time to hear a guy named Mik Scarlet saying the COVID environment is giving average people a better understanding of what it’s like to be at odds with the “built environment.” Scarlet, a wheelchair-user who is an expert in access and inclusion, explained it like this: “Non-disabled people are finally getting the idea of what it’s like to be told I’m sorry, you can’t come in, we don’t have access for you. It’s having your world shrunk, when it’s not your fault.”

What I’d tuned in to that day was the National Public Radio Show On the Media. The weekend show was crediting the unique experience people with disabilities have as a group when it comes to rebuilding infrastructure.

During the show, host Bob Garfield wonders out loud if those experiences might help policy-makers and advocates when it comes to rebuilding our post-pandemic world. “Well, isn’t this awkward?” he asks in a refreshingly sardonic way. From there, he points out that eight billion people around the world are living in a centuries-old environment constructed in a way that now, during the pandemic, is dangerous: narrow passageways, crowded indoor spaces, poor ventilation. “Now we’re going to have to retrofit the entire built world to accommodate a new biological reality,” he says. “To some people, though, that’s a movie they’ve seen before. Namely, those with disabilities. The universe is facing what people who use wheelchairs have face their entire lives: an infrastructure that just doesn’t work.”

After his interview with Mik Scarlet, Garfield turns to Sara Hendren, professor at Olin College of Engineering. The mother of a child with Down syndrome, Hendren is the author of What Can A Body Do? How We Meet the Built World. The book discusses ways to apply the wisdom and work of people with disabilities to the process of redesigning a post-pandemic world.

Curb cuts, wheelchair-accessible bathrooms, auto-captioning, automatic doors, Braille buttons on elevators…over the past half-century, people with disabilities have worked for accommodations that are now so commonplace everyone takes them for granted.

What will be next?

Hendren says things we’ve seen this past year — seniors-only shopping hours, flexible remote work options, accessible food and grocery delivery services, opening shared streets to pedestrians and bicycles — are all changes people with disabilities have long been asking for but were not made until the mainstream needed them.

What I learned from the broadcast — and then from listening to the podcast again afterwards — is that when it comes time to start reimagining the post-pandemic-built world, policy makers would do well to take lessons from the disability rights movement. Disability advocates have a lot of experience rebuilding society to accommodate new biological realities. I hope the people in Washington are listening!

 

How My Disability Helped Me Get Through 2020

Thinking back on everything that happened in 2020, one can’t help but wonder. How on earth did I manage to get through this upside-down year? My answer might surprise you. It sure surprised me!

I credit my disability.

Let me be clear — the fact that I am blind is not what’s helping me cope. Being blind is somewhat problematic in a pandemic. Social distancing, for example, can be difficult because it is hard to judge what six feet is, but my Seeing Eye dog Luna and I do our best.

The thing that helped me cope this year is the experience of going blind. Three decades ago, I survived a similarly scary year. 1985 was the year I lost my sight. Like 2020, a year of loss and limitations.

And lessons learned.

Some of those lessons? Slow down. Ask for help. Be brave. Be resourceful. Learn new skills. Help others. Make mistakes, and learn from them. Be grateful. Focus on things you can do rather than fret over those you can’t.

Simply put, allow life-altering events to do just that: alter your life. I wonder…do other people who’ve transitioned to life with a disability feel this way, too?

The skills I learned the year I lost my sight all came in handy when my husband Mike was admitted to the hospital in March this past year with the COVID-19 virus:

  • Luna and I were alone, on our own, for ten days. I wouldn’t have made it through without her, and I’m grateful to the Seeing Eye for her training.
  • People contacted me to see if I needed help, and I answered honestly. I could use some food! Far-away friends and family charged meals-to-go at local restaurants, and neighbors
    volunteered to pick up my dinners and deliver them to our condo.
  • I got more adept at using VoiceOver (the speech synthesizer that comes with every iPhone) to text and answer the phone when Mike called, or when caring doctors, social workers, friends and family contacted me to see how he’s doing.
  • My part-time job moderating this blog for Easterseals National Headquarters saved me from feeling lonely. Public policy, special education, health care, funding – all extremely important issues during a pandemic. My work here kept me engaged, and I am grateful my job continued, working from home.
  • Before he got sick, Mike had been taking Luna out for her nighttime “empty” of the day. Now, just like when I was losing my sight, I had to be brave. I donned a mask and disposable gloves every night, and assumed bad guys were staying home during the pandemic.

As days went on with Mike still in the hospital, I started ending my email and text responses by asking that, “If you pray, please pray for us. If you think, send good thoughts our way.”

They did. It worked.

After ten days away, Mike came home. And that’s when it dawned on me. I hadn’t been home alone at all: all those people thinking about us helped us through. In its own upside-down way, 2020 has taught me what a gift it is to love – and be loved by –  people so much that we ache to be with them in person. I’m hopeful for 2021, a year of good health, happiness…and hugs.

 

This Just In: Specially-Trained Dogs the Only Service Animals Allowed on Board

I’m blind. My Seeing Eye dog Luna guides me safely wherever I need to go, and in the past, my blog posts here have been pretty clear about how I feel about people in America faking their pet is a service dog to get them into places they are not allowed. So clear, in fact, that when news came out last Wednesday that The Department of Transportation (DOT) will no longer consider an emotional support animal to be a service animal, a popular online dog magazine called The Bark contacted me to write an informational article about the DOT decision and how it paves the way for airlines to ban emotional support animals from flying for free in the cabin. My article retells a story I shared with you here a while back about a small so-called emotional support dog lunging and yipping at my Seeing Eye dog while we were checking in for a flight at Chicago’s Midway Airport. An excerpt from my article in The Bark:

Thousands of Americans who are blind or visually impaired use guide dogs. I trained with my first Seeing Eye dog, a black Labrador named Pandora, in 1991, 30 years ago. Whitney, my fourth guide dog, is 11 years old and retired in December last year. This past January I returned to the Seeing Eye in New Jersey to train with my fifth Seeing Eye dog. My January flight back home from Newark to O’Hare with Luna, a spunky two-year-old black Labrador, is the only time I’ve flown with her so far. My Seeing Eye dogs and I usually take about 20 flights a year to give presentations and speak at conferences. (Covid-19 has kept us close to home this year.)

You can read the entire Bark article here to learn more. Keep in mind that these regulations have not yet been officially published in the Federal Register, and federal regulations do not take effect until 30 days from the date they are published there. After that, when it comes to air travel, only dogs can be service animals. Companions used for emotional support won’t count. I see (ahem) this as good news.

Thank you, Department of Transportation, for listening to the concerns of people like me, who fly with qualified guide dogs. Now, once COVID-19 vaccines come through, Luna and I can feel confident about returning safely to our lives as regular air travelers.

 

Love is Blind, Part Four: Thankful for What COVID-19 Taught Us About Relationships

Speech bubble with a heart in it connected to another speech bubble with a heart in itIn the first 3 parts of this series, I talked about the transition between “just friends” and being in a relationship…slowly. Our first date, my first solo flight, and the aftermath of spending a week together.

We’ve learned a lot since then.

One morning during his visit back in September, I broached the subject of the post you are reading now, and asked him if he could help me write this by sharing some things he’s learned — either from me or this experience as a whole. I wanted to hear his perspective, and I also wanted this to be more about us, not just about me. “This is such a great idea,” he had said enthusiastically. So I pulled out my phone to jot down some notes and made a list.

  1. We both learned about patience…very quickly. I’ve made some light-hearted mentions of my level of patience — or lack thereof — in previous posts. But as visits got pushed back due to travel restrictions and quarantine, I had to learn to be patient — to remind myself that this was not a reflection on him, but this was out of our control. He wasn’t blowing me off, we just couldn’t travel. We discussed this further as I took diligent notes to prepare this post, and he added something that I loved and asked if I could quote. “I learned about being mentally strong,” he told me. “Like, you can’t give up so easily, no matter what life throws at you.”
  2. It’s important to stay connected. I’ve mentioned previously how anxious I can get, jumping to worst-case scenarios. I did this pretty early, saying I was worried we’d grow apart with the time and miles separating us. We’d be away from each other much, much longer than we had originally planned. He listened intently and let me get everything off my chest before talking it through with me. To help with this, he was the one that came up with ways we could stay connected. Sometimes he’d send me episodes of a show he was watching and we’d watch it at the same time. Most recently, and my absolute favorite, is participating in discussion groups through the Hadley Institute. Hadley offers a variety of discussion groups, and the one we participate in together is called travel talk. These take place online via Zoom, but you can also dial in via telephone and enter the meeting ID. The Zoom app mutes all other notification sounds while a meeting is in progress, so the dial-in method is the one he and I prefer. Sometimes we text our commentary as we listen in so it feels more like we are doing this together — we want to make sure we don’t miss each other’s messages!
  3. Consistency is so important. Having a routine (good morning messages, regular phone calls — some of them scheduled, others just random check-ins — throughout the day) helps so much. A common misconception of long-distance relationships is that they “aren’t real,” because there isn’t regular face-to-face contact. Having consistency makes us feel more connected and involved in each other’s day-to-day lives.
  4. This one is just for me personally, I cannot speak on behalf of Juan, but I learned how important it is to be with someone who is good for your mental health. I wrote a previous post opening up about how I was doing during quarantine. Some days were really hard. This made for a lot of long phone calls, some of which were one-sided, as I was having a bad mental health day and I just needed to talk about it. This pandemic taught me what people really mean when they say “It’s okay not to be okay.” Things were so much different here than they were in Houston, and sometimes he’d forget that, until I’d bring it up and say I’m struggling. And so, we’d talk about that.
  5. Lastly, while routines are important, it’s also important to include some spontaneity. Surprise each other. This is easy with technology. Send things to the house. Back in August, when I knew Juan had a particularly tough week, I used the Uber Eats app to send breakfast and coffee to his house.

This year has thrown so many things at all of us, and in those times when I become overwhelmed with everything that has happened this year, I remind myself of the good things that came out of it. Even though we won’t be seeing each other for the holidays, I’m still so grateful for our relationship. I’m happy to be with such a kind, caring, amazing person who’s a good listener, whose creativity has strengthened our relationship, and who cares about the people I love.

 

These 17 COVID-Related Song Titles Help Me Feel Thankful in 2020

Trainers at the Seeing Eye school encourage us to talk to our dogs as they guide us. “Remind them you’re there,” they say. “It keeps them focused.” Illinois Governor J.B. Pritzger’s Stay at Home Advisory starts here in Chicago today, but we are still allowed to go outside with our dogs. Since the pandemic hit, I’ve been taking one, and sometimes two, hour long walks with Luna every day, and when I run out of things to talk to her about? I sing to her instead. With Thanksgiving coming soon, I’ve narrowed my sing-along list to titles that express things I am grateful for in this difficult year. Most are songs I listened to as a child and in my young adulthood, and my focus here is on the title of the song, not the lyrics. Here goes:

  1. Every Breath You Take (The Police) Before 2020, I took breathing for granted. Not anymore.
  2. Fever (written by Otis Blackwell and Eddie Cooley, performed by everyone from Peggy Lee to Beyoncé) High fevers are a common symptom of COVID, and when my husband Mike took sick on March 17, his fever spiked at 103 ° and stayed there. No breathing issues, however, and for that I am grateful.
  3. I Can’t Get Next to you (The Temptations) Doctors told us to stay home and assume Mike had COVID, he and I separated into what he referred to as our “two kingdoms” at home for a week before he collapsed from fever and was taken to the ER. Grateful they still had rooms at the hospital, and that we have health insurance.
  4. Gimme Shelter (Rolling Stones) Sheltering in place became the norm, and I feel fortunate to have a roof over my head.
  5. We’re All Alone (Boz Scaggs) Mike tested positive for COVID in the hospital, and new Seeing Eye dog Luna and I were at home alone for ten days.
  6. Puppy Love (Donny Osmond) See above.
  7. And I Miss You (Everything but the Girl) I missed Mike, but was comforted and grateful to dedicated medical workers taking care of him.
  8. Telephone Line (Electric Light Orchestra) I worked on my skills with VoiceOver (the speech synthesizer that comes with every iPhone) to text and answer the phone when Mike called, or when caring doctors, social workers, friends and family contacted me to see how Mike was doing. Three cheers for assistive technology!
  9. Don’t Stand So Close to me (The Police) Determining just how far away six feet is without being able to see is not easy. I give it my best guess when out alone with Luna., and others we come across seem to understand my predicament.
  10. Signed, Sealed Delivered (Stevie Wonder) With Mike still in the hospital, friends and family members signed me up for gift cards at small local establishments, restaurants sealed hot meals into to-go bags, nearby friends picked them up and delivered them to the lobby of our apartment building.
  11. With a Little Help From My Friends (The Beatles)See above.
  12. Makes Me Wanna Holler (Marvin Gaye) columnist Heidi Stevens quoted Mike in a column she wrote for the Chicago Tribune when he was still hospitalized and I was waiting to be approved for a COVID test. Early on in the pandemic, COVID tests were hard to come by (even for someone like me, with a significant disability, Type 1 diabetes, and exposure to someone diagnosed positive). Very frustrating, and I admired journalists and reporters covering stories like ours to help readers better understand a disease none of us had encountered before.
  13. Here We Are (James Taylor) I finally get tested, Mike gets released from hospital, he spends three nights at a COVID Hotel, and finally comes home COVID-free.
  14. Dizzy (Tommy Roe) COVID-free doesn’t necessarily mean symptom-free. A “long hauler” now, Mike still gets dizzy while taking walks, but we both are thankful he’s home and improving.
  15. We’re Gonna Zoom, Zoom Zoom The theme song from a 1970s PBS children’s show becomes my theme song for the memoir-writing classes I lead. Not the same as being face-to-face, but glad for this safe way of keeping up with my writers “of a certain age” every week now. Also grateful to Easterseals for encouraging me to work from home.
  16. Long Ago and Far Away (Joni Mitchell) Running into old friends out and about, giving them hugs, traveling to visit out-of-town family and friends, having people in for dinner, visiting elementary schools to give presentations…Seems like decades ago now.
  17. Happy Together (The Turtles). Over the summer, neighbors started bringing chairs down to our local park, and on especially hot days little kids brought sprinklers, too. While wearing masks and social distancing we were able to catch up with each other. Now, if everyone follows the stay-at-home advisory long enough for numbers to start going down, maybe next year we’ll be able to celebrate Thanksgiving with family and friends inside again.
 

Love is Blind: Part Three of a Series About Long-Distance Relationships during COVID 19

Ali, a young woman with short brown and wavy hair smiling with boyfriend Juan, turned slightly towards her, also smiling. They are sitting on a bench and each has an arm around one another.In Part Two of Alicia Krage’s four-part series about long-distance relationships during COVID, she told readers how assistive technology played a role in growing their casual friendship into something bigger. Today, she describes how their bond continued to progress. 

The week that Juan had to cancel his trip to Chicago was tough. My mindset that entire week centered on “he was supposed to be here.” However, the two of us managed to keep ourselves occupied.with phone calls!

One thing I loved about our conversations (and still love to this day) is that they get very in-depth very quickly. I distracted myself from life in quarantine by focusing on his life in Texas instead. I asked him what he’s been doing, where he’s been. He said he was being cautious, and wasn’t going out a whole lot. We have some very deep conversations about blindness, too.
Not the topic of blindness itself, but our lives as blind people.

We talked about what it’s like to date as a blind person (I’m the first totally blind person Juan has ever dated). And when we were discussing getting out of the house, blindness did come up. “When you do go out, will Uber drivers still get out of the car and help you to the vehicle?” I asked. He said yes. Some other things we talked about:

  • Traveling. Where would we love to travel one day? We have big
    dreams! We wondered how COVID might affect travel. How much assistance can we count on — or not count on — at an airport now?
  • Assistive Technology. We compared notes on accessible certain
    platforms and web sites are.
  • Our parents. His parents remind me so much of my own.
  • Growing up. We swapped childhood stories.

Through all that, because of COVID, we knew we couldn’t visit each other in person. We kept in close contact by texting pretty regularly and making looooong phone calls instead. But were we dating?

That question was answered on a memorable day in May – Juan’s dad’s birthday, actually. Juan called me when he found out his brother would be coming in from Fort Hood Army Base in Killeen, Texas to Houston that day to surprise their dad. He wondered if it’d be okay to call when his brother arrived so he could introduce the two of us over the phone.

Then a silence stretched between us as we wordlessly recognized this silly little dilemma: what is he supposed to say? As if reading my mind, Juan nervously asked, “How do I introduce you?”

“What do you mean?” I asked, even though I kind of knew what he was getting at.

“Like, do I…do I introduce you as my girlfriend?”

“Sure!” I exclaimed. “You can do that.”

The words flew out of my mouth before I realized what I had just agreed to. He laughed, sounded a bit confused, and I explained my answer. “I appreciate you wanting to meet my parents before we make it official and everything, I really do, but we don’t know how long this pandemic is going to last and it kind of somehow already feels like we’re together,” I said. “So I’m not really sure what we’re waiting for.”

And so, just like that, there it was. And then it was our responsibility to figure out this long distance thing together, and how we’d stay connected through this pandemic.

Read Part Four, where Alicia spells out the things she and Juan have learned to keep a long-distance relationship going during extraordinary times like these.