Happy Mother’s Day to all of us with children who have disabilities! We celebrated early — my husband Mike, Seeing Eye dog Luna and I rented a car and traveled two-and-a-half hours from Chicago to visit our son Gus in his Wisconsin group home.

Our son Gus – he’s bigger and stronger now.

Trips like that used to be a routine, monthly occurrence. But you all know what happened in March 2020. Before our early Mother’s Day trip, we hadn’t been inside Gus’ house to visit him in 16 months. It’s been a long year, and we are grateful to the group home for following CDC regulations to keep Gus and his roommates safe. None of them ever tested positive for COVID, and all of them are fully vaccinated now.

Typically, we call the house on the drive up to let them know we’re coming — and to be sure they didn’t have some outing planned. We called as we were driving up, but the house phone was busy. And busy. And busy.

It’s common advice for those of us who have loved ones in the care of others to make unannounced visits…to check on their care. And early on we did that from time to time, but over time, our trust had grown. And Mike and I don’t really like sneaking up on people whom we’ve come to trust. This time we had no choice, though. We just showed up.

Gus’ house is actually a duplex. Four bedrooms, a living room and a kitchen on each side. An inside opening between the units allows staff members to toggle between as necessary. But Saturday, there seemed to only be one staff member there. All the residents were just finishing lunch when we arrived, and the staff member had her hands full. When Mike explained that he’d tried to call, she apologized. Minutes earlier she had realized one of the residents had knocked the landline phone off the hook.

Some might judge this staff member as irresponsible, but we knew better. She was just overworked. The nonprofit Survival Coalition of Wisconsin Disability Organizations conducted a survey of 504 providers of disability services showing that costs are rising and revenues plunging across the industry. Nearly 20% of surveyed businesses and organizations providing such services were unsure whether they would survive the pandemic.

A number of the part-time workers at Gus’ group home attended local colleges. With classes meeting online now, those students have left the area to live at home with their parents. Other staff members have left for safer jobs. A story on Wisconsin Public Radio (WPR) reported that “aides take on demanding duties and are typically paid about $12 an hour in Wisconsin.” And it’s not just Wisconsin. More from that WPR story:

The long-term-care sector has experienced at least 6% of Wisconsin’s coronavirus diagnoses and more than 40% of deaths from COVID-19.

And it’s not just in Wisconsin. I’ve heard that long-term caregivers are in short supply across the country. Caring for people with special needs can be overwhelming. We know that first-hand. Way back—nearly 20 years ago—when Gus had just moved away — we’d take him on outings. Typically to Culver’s, where he’d demolish a double cheeseburger. Then we’d take a ride, roll the windows down and sing along to tunes blasting on the radio.

That was fun, but Mike can no longer muscle our son in and out of his wheelchair and in and out of the car the way he used to. We stick to house visits with Gus now, sitting and talking with him. I update him on what his aunts, uncles and cousins are up to these days —he doesn’t always understand, but it’s enough for him to recognize that it’s his mom talking to him. Then Mike chimes in, calling out a robust “Hi Gus!” in his best booming dad-voice.

Gus always recognizes our voices. Our early Mother’s Day visit was no exception — he smiled and laughed the minute we entered his room. And then he just erupted, about every 10 seconds, with an excited roar of joy. Hearing that, sharing hugs, back together after so many months away…I truly couldn’t ask for a better Mother’s Day this year!

I just got word that the U.S. Department of Justice has moved to intervene in a disability discrimination lawsuit brought by private plaintiffs alleging the City of Chicago violates the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973 by failing to provide accessible street-crossing signal information for pedestrians with disabilities.

Chicago currently provides visual crossing signals — “walk/don’t walk” signs and countdown timers — for sighted pedestrians at nearly 2,700 intersections. It has only installed Accessible Pedestrian Signals (APS) at a mere 15 city intersections.

Sighted pedestrians use flashing “Walk/Don’t Walk” signs and countdown timers to alert them when it is safe to cross the street. I can’t see those helpful devices. Devices providing pedestrians with safe-crossing information through audible tones, speech messages, and vibrotactile surfaces do exist, but too few of the busy intersections in Chicago offer them. The proposed suit alleges that the lack of accessible pedestrian signals at over 99 percent of Chicago’s signalized intersections subjects people who are blind, have low vision, or are deaf-blind to added risks and burdens not faced by sighted pedestrians, including fear of injury or death.

I’ve come across accessible pedestrian signals in other cities we’ve visited — Madison, Wisconsin comes to mind, and Urbana, Illinois has a few — but those were inconsistent. At some intersections, hearing “beep, beep, beep” meant I should cross, and at others it meant I should stay put. Looking for the button to press to activate the accessible pedestrian signals got me off-track and made it hard to find the crosswalk again. Sometimes the beep, beep beep noise was so loud it made it difficult to hear and judge the traffic surge. I pitied the poor people who lived and worked near one of the APS and had to hear it all the time.

When I was newly blind and learning to use a white cane, orientation and mobility (O&M) instructors taught me to rely on the surge of traffic at my parallel to recognize when the signal is green and it’s safe to walk. That principle is reinforced every time I travel to Morristown, New Jersey to train with a new Seeing Eye dog. In fact, at the Seeing Eye, one isn’t eligible to be matched with a dog without having completed O&M training.

Dogs are color blind. Seeing Eye dogs can’t read the stoplights, so it’s not their job to determine when it’s safe to cross a busy street. They are trained to go right up to every curb at each street crossing they get to, stop right there, and trust their human partner to use their sense of hearing to figure out what direction traffic is moving. Once we’re certain that traffic is flowing the same direction we want to travel, we give our dogs the command to cross. Dogs are trained to keep an eye out and to disobey their partner if the team is in harm’s way. It’s called intelligent disobedience, and it’s a pretty difficult thing to ask the dogs to do, when you think about it.

Traffic in Chicago has changed immensely in the year my new Seeing Eye dog Luna has been with me — things started out normal in February, 2020. Then came the COVID shutdowns in March. Cars were few and far between, making it difficult to rely on my sense of sound to judge traffic flow. “Is the light green?” With so few people out and about, there was no one to ask.

Traffic increased again when things opened up in the summer, then decreased again when a surge in COVID forced another shutdown in fall. I’ve made my share of bad decisions at intersections during these times, and I cringe to think that onlookers are blaming my young new dog Luna when it’s me who made the mistake.

So I’m no longer skeptical when it comes to accessible pedestrian signals. Do I need one at every corner? No. Be selective and put them at particularly difficult intersections — the T-intersection down the street comes to mind. I need all the help I can get at that one. You know what else would help? Making the already-existing countdown timers audible. In these times of talking computers, VoiceOver on smartphones, and speech synthesizers, it seems a simple call-out of “ten, nine, eight…” and so on wouldn’t be that difficult. And what a great help it would be to me and my fellow visually-impaired pedestrians.

My boyfriend Juan lives in Houston. I live in the suburbs of Chicago. He came to visit me last fall, and the last day we were together was September 26, 2020.

That was nearly seven months ago.

A few weeks ago, I finally booked tickets to fly out there this month for a much-needed and highly-anticipated reunion. I’m not going to lie to you: the long wait hasn’t been easy. With a feeling of uncertainty constantly looming over both of us, some days really took their toll.

When we parted ways in September, we were reasonably certain I’d be able to make it out there for my birthday and Thanksgiving. I didn’t. We also missed New Year’s, his birthday and our first Valentine’s Day together.

Phone calls, text messages, and Zoom meetings galore kept us busy and connected. It was tough, but in the grand scheme of things, it’s been worth it.

I am not the type of person to make travel plans and wing it. I like to do a lot of research beforehand. Before I took my first solo flight last year, I did a lot of research on airlines and accommodations, and asked blind and visually-impaired friends what their advice was. I posted my questions on Facebook and I did a lot of my own research on airlines and accommodations.

When planning my upcoming trip, I didn’t post any questions on social media. Instead, I talked again to blind and visually-impaired friends, and this time I also talked with former teachers who are very familiar with blind travel or have traveled themselves. Some of the questions I asked:

• What was assistance like at the airports?
• Was the level of assistance any different than before COVID?
• Should I plan to arrive extra early, even earlier than I normally would?
• Does the airline need advanced notice of my need for accommodations?

While I don’t expect things to be super different, I do expect some changes, so I logged onto the Southwest Airlines website to read about their COVID-19 travel updates. It doesn’t look like traveling is any different in terms of accommodations. Boarding might be a longer process, but typically I go for pre-boarding anyway. There are markings on the floors to indicate a 6-feet distance, but I trust that my assistant will make sure I am distanced from other people.

So, after extensive, careful research and my family and me getting fully vaccinated, it felt like the right time to travel to Houston.

Juan and I have discussed the Texas governor’s recent decision to lift all mask mandates there, and he assured me he always wears his mask. I asked him if restaurants still require masks and, if so, how he knows that (since, like me, he is totally blind and wouldn’t be able to read the signs). “I’m usually with two of my friends who can see, and they’ve told me there are signs,” he explained, assuring me that the businesses he goes to are still really good about requiring masks.

So with that extra reassurance, I finally booked my flight! I’ll be spending two weeks in Houston, somewhere I haven’t been since early 2020. I’m excited to see some of my friends that I met last year, and welcome that sense of freedom that always sticks with me after traveling somewhere on my own.

Look for another post about travel from Ali when she returns from Houston in May and can report in on their adventures together there.

Anja Herrman’s well-written guest post about disability and empowerment was so, well, powerful that it got me thinking about my own journey to discovering strength in disability, too.

Before I lost my sight I was the Assistant Director at the University of Illinois Study Abroad Office. I helped college students who wanted to study overseas and arranged housing and other details for students from Britain who were spending a year at the U of I. The job entailed talking with students, checking out what programs might work for them, phoning different college departments or other universities to arrange for the transfer of college credits. I was sure I’d be able to perform these tasks without being able to see.

My boss, however, was sure I could not.

I tried proving her wrong. At first, I didn’t use a white cane or a dog. I quit driving or riding my bike, but I could still see well enough to walk to work with a walking cane (my husband Mike and I happened to have bought one as a souvenir during our honeymoon in Scotland months before, when I could still see perfectly well). As my eyesight got worse, I started making mistakes in the office. I ran into tabletops. I had to sit inches away from my computer screen to see the words. After I spilled grounds all over the floor one day while making the morning coffee, my boss took me aside and told me I wouldn’t be going to the annual convention with my colleagues that year. “You’ll embarrass the office,” she said.

That all happened in 1985. The Americans with Disabilities Act (ADA) had not been passed yet. Three months later, she terminated my contract. Fast forward to 2021. The ADA requires “reasonable accommodation” for individuals with disabilities in employment and at places of public accommodation such as retail stores, office buildings, sidewalks and movie theaters. I am totally blind now, and I use speech software to write for publications and moderate our blog. I’ve had three books published, and before COVID my Seeing Eye dog was leading me to buses and cabs to get all around Chicago to teach five different weekly memoir-writing classes for people 60 and better. With more and more seniors getting fully vaccinated, I look forward to teaching in person again soon.

We still have a long, long way to go before hiring practices are totally fair to those of us with disabilities. But ever since the passage of the ADA, things have been moving in the right direction for me and the millions of other Americans who have a disability. The wisdom and determination of all the many, many people who banded together in 1990 to get the ADA passed leaves me feeling empowered. We have the law on our side.

I like to start my mornings with coffee and a podcast. I never used to be into podcasts, actually — I’d listen to a few here and there — but when COVID-19 regulations started keeping us closer to home, morning podcasts became a part of my routine.

The first one I ever listened to was Serial, a murder mystery. Since then, my two favorites are Crime Junkie and Morbid: A True Crime Podcast.

A few weeks ago, our Easterseals blog moderator Beth Finke told me about a podcast called X-Marks The Spot and asked me if I’d be willing to give it a listen and write a review for you Easterseals National blog readers.

Created by the Chicago Children’s Theatre (CCT), X-Marks The Spot is a five-part serialized audio production conceived and directed by CCT Artistic Director Jacqui Russell. She came up with the idea after completing a 2018 residency at Otis Elementary, a Chicago Public School where some children with visual impairments learn alongside their sighted peers.

Listeners to the podcast are encouraged to listen to the dialog and the narrations to enjoy a story using their sense of smell, taste, touch and hearing rather than depending on their sense of sight. Sighted people can and do enjoy all sorts of podcasts, but they might not be used to podcasts that are more of a performance and a story. Not being able to see the action may be new to them. I thought this was really interesting, so I was glad to give it a listen and then give you readers this review.

Described as an “extra sensory experience,” X-Marks the Spot is obviously much different than what I normally listen to. I’ll use certain scenes to give examples here , but don’t worry about spoiler alerts – my examples won’t spoil any major plot twists! Here are my thoughts about the podcast’s representation of blindness:

• X-Marks The Spot follows a family with 4 children, including Melody, who is blind. It begins by introducing each member of the family, and then having that person speak so the listener can identify the person based on their voice. I enjoyed the beginning of the podcast because Blind people are used to identifying people by their voices, but sighted people may not be.
• The beginning also described the different dimensions of visual impairment. Some people who identify as blind actually have some sight. Melody, the character in the podcast, is completely blind, just like me.
• The first episode also addresses something that intrigued me, because it’s a question I often get: how do you describe color to a blind person? There’s a quick scene that is a great representation of this. While the children are in the car, they play a game where someone describes a color without saying what it looks like: they use their other four senses instead. This way everyone can play on an even keel, Melody is not at a disadvantage because she can’t see. Example: “This color sounds like a sick guitar solo. It feels like a skinned knee. It smells and tastes like desert air.” The color was red. This was one of my favorite scenes, partly because I had read once about describing color to a blind person using senses, and another because it was fun! I, too, was able to play along and try to guess what color they were thinking of.
• In another episode, the kids are flying a kite, and their mother puts a bell in the kite so Melody could hear how high it goes. I don’t know if I ever flew a kite as a child, but if I did, we never adapted it like this. That’s certainly not because my family didn’t want to. That idea just never occurred to us.
• I think this is a great podcast for children. Even as a 28-year-old listening to something geared toward a younger crowd, I found myself laughing at some parts.
• I think it does a great portrayal of blindness, from the color game to mentioning the white cane to even being able to hear the sound of the Braille writer.

I think kids of all ages would really enjoy this podcast — it might give them ideas for ways to adapt things, such as the kite and the color game. My family has always wondered how to describe color to someone who can’t see (my dad has asked me this a few times and has always been curious).

So now I can give him an idea. While X-Marks the Spot is different from podcasts I normally listen to, it is something lighthearted, amusing, and I’m glad I was able to write about it here. I recommend you give X-Marks the Spot a listen – you can find out more and link to the podcast from the Chicago Children’s Theatre web site.