My 15-year-old author friend Anja Herrman, a.k.a. DJ Mermaid, is going to be on WBEZ, Chicago Public Radio, today, September 22, 2021 at 3:44 pm. I wrote a post here years ago when a conversation Anja had with her aunt first aired on StoryCorps, and today I’m sorry to report that the national StoryCorps project has decided to permanently close its Chicago StoryCorps booth. Since they first opened in 2013, StoryCorps Chicago has recorded and preserved more than 4,000 facilitated interviews in the Chicago StoryBooth, but that all ends this week, when StoryCorps Chicago is ceasing operations.

But rest assured, there is some good news to this blog post! To honor its official end this week, 10 StoryCorps pieces produced by WBEZ’s talented soundman Bill Healy over the past seven years have been chosen to air again, and guess what? One of them is that conversation Anja had with her aunt back in 2015!

Anja’s five-minute story will play on WBEZ today, Wednesday, September 22, 2021 at 3:44 PM CST. Anja was only nine years old during that conversation, and I have it on good sources (Anja’s mom!) that the piece WBEZ airs today will include a little update from Anja now, at age 15.

I came to know Anja especially well when she was nine years old and learning at home during a casting program (casts on both legs from her hips down to her ankles). She was schooled at home for two months back then, and I was her at-home writing tutor. Many of her completed assignments have been published as guest posts here on our Easterseals National blog, and you can read this post from 2016 to learn how and why she had all her posts back then published under the pen name DJ Mermaid.

A published writer and disability activist these days, Dj Mermaid goes by her real name now: Anja K. Herrman.

Anja was the winner of the Primary Division Playwright Discovery Program at the Kennedy Center in 2019, and a keynote speaker at the #EachforEqual International Women’s Day Event in 2020. Her work has been featured in Magnets and Ladders, Input Magazine, the Disabled Writers blog and the Huffington Post.

Anja uses a power wheelchair to navigate her public school now, she’s learned a lot about ableism in the past six years and is sure to have a lot to say when StoryCorps asks for an update. Join me by tuning in to hear it all on WBEZ in Chicago or asking your smart speaker to “play WBEZ” at 3:44 central time today, Wednesday, September 22, 2021.

Freepik

My family makes it a priority to take a vacation together every year. Some vacations are smaller (Wisconsin Dells is just a three-hour drive from Chicago, for example), while others have been a little fancier. For about five years now, my parents have allowed significant others to tag along, and this year was my boyfriend Juan’s very first vacation with my family.

This year we’d all decided to go to the Excellence Riviera Cancun. A friend who is blind had his honeymoon there, but his wife could see, so I didn’t honestly think to ask him about how accessible and accommodating the resort was. My parents had been there a few times and spoke highly of the customer service they received there, so my expectations were pretty high.

I feel confident enough traveling with Juan, and I knew we could always ask for help if we needed it, but when my dad made our reservations, he made sure the resort understood that our group included a blind couple. I couldn’t be sure what this might mean in terms of the services that would be provided to us or whether it’d make a difference whether they knew in advance or not. In the end, though, I was glad my dad went ahead and told them.

One of the many things I love about Juan is that he’s a people person and has no problems talking to strangers. I knew he’d be up for this adventure in Cancun.

Another thing I love about him is how thoughtful he is. I’ll give you an example. Juan lives in Houston, I live in a suburb of Chicago, and he flew in to Chicago on his own the day before we were leaving for Cancun so our family and our significant others could all travel from Chicago as a group the next day. And then there’s this: the day my parents and I went to Midway to pick Juan up, he was able to find assistance from the gate so quickly that he was already at baggage claim by the time we’d arrived.

Finding his luggage was easy, too: his mom texted me earlier that morning with a picture of it so my parents knew what to look for.

In Cancun, we stayed in the swim-up suites, which meant each couple had their own private terrace complete with table and chairs, a lounge bed, and a ladder into the public pool. When my mom showed us around our suite (including the terrace), she pointed out a small patch of rocks next to the ladder. What a great landmark! When navigating around the suite, neither of us had our white canes with us. We decided that any time we’d be heading to the lounge bed or the pool, at least one of us would have our canes and see if the patch of rocks would help us get our bearings.

We spent a lot of time out on our terrace. On most mornings, we’d order room service for breakfast and eat outside. Afternoons were spent lounging by the pool, and sure enough, using the rocks as a landmark worked out beautifully. I used my cane in my right hand while holding Juan’s hand in my left, trailing around the table and chairs and the lounge bed before reaching some grass. After a short trek through the grass, we’d come across the rocks, and to the left of that was the ladder. I’d hit the ladder with my cane a few times so Juan would hear where it was.

“Now I have to figure out where to put this,” I thought out loud to myself during our first venture to our side of the pool. I wanted to set my white cane down by our ladder while we were swimming, but I worried someone might move it. Finally an idea came to me. I could fold it up and attach it to the side of the ladder. That way, we’d know the ladder with the cane was the one that led to our suite. No one would be able to move it, and it wouldn’t get lost. This video by Perkins School for the Blind shows how a white cane can be folded up and attached places. This worked out well and served as almost a public service announcement that we were blind. Other guests would approach us in the pool and ask if we needed anything (like a raft to float on, for example). One nice man even came up to us to tell us that the pool was pretty crowded, so if we got turned around there would be several people available to help us. One time I was in the pool by myself, and when a woman saw me climb the ladder and feel for my cane, she came up to me and politely asked, “Excuse me, are you looking for your cane?” What a pleasant surprise! Not only did she call it a cane (normally people call it a stick), but she asked me if I needed help rather than just assuming I did.

The resort also had a coffee shop. Those of you who have read my previous posts here on the Easterseals National blog will not be surprised to hear I was there every day. One morning, Juan and I decided to try and see if someone from the hotel would be willing to escort us there, not wanting to rely on my parents or sisters to walk us. We called the front desk, and when Juan explained we were both blind and asked if someone would be willing to assist us. They said, “Of course!” They were very prompt and at our door in about 5 minutes. This quickly became a part of our morning routine.

The vacation flew by, and he didn’t go back to Houston right away: two days after we arrived back in Chicago, I accompanied my dad to drop Juan off at the airport.

When our friends (his from Houston, mine from Chicago) ask how our trip went, both of us excitedly tell them about the great service, and how this would be an ideal vacation spot for blind and visually impaired individuals. Not only is it great that it’s all inclusive (so once you arrive, there’s so much to do that you don’t need to leave the resort), but the staff is very friendly and more than happy to help.
Our first vacation together (and his first one with my family) was a huge success!!

Our son Gus was born in 1986 with significant physical and developmental disabilities. He lived at home with us until he was 16 years old. After that, he was cared for at a group home in Watertown, Wisconsin.

Until December of last year, that is. That’s when my husband Mike and I were notified by the organization who ran Gus’ group home that they would be permanently closing their residential operations, at least partly due to the financial burdens COVID had caused.

We thought Gus would be living under their care for the rest of his — and our — lives. The news that the home would be ending its housing services proved to be an anxious daily worry for months to come.

COVID vaccines were not readily available yet in December 2020. COVID protocol did not allow us to visit Gus in-person then, and Mike and I were already pretty stressed out by living through a year of pandemic-related unknowns. Adding this new unknown — where would Gus live now — nearly toppled us.

A case worker was assigned to find a new placement for Gus, and COVID protocols meant we would not be allowed to visit any of the facilities the case worker found. Not in-person, at least. Our only option was to visit them virtually, and Zoom was the only way to meet and talk with the people who might be caring for our son from here on.

When the case worker found another group home with an opening, I was all for it. It was closer to us than the other one, and I feared we wouldn’t find anything better. But Mike wanted to hold out. He hoped against hope that Gus’ original home would find an organization to take over the house he was familiar with — the one he’d lived in for so long. That would be ideal, Mike said. Gus wouldn’t have to move, and current staff could even be retained.

But why would any organization take over the house Gus lived in during COVID times? Even before the pandemic hit, low pay and hard work had already been motivating staff members to leave for higher-paying jobs. One constant throughout all our son’s years in a community setting: direct-care providers caring for him have always, always been underpaid. Over the years we learned to expect high staff turnover.

Low pay causes instability in the lives of the workers and the lives of the people they care for, and the necessity for social distancing and mask-wearing made this past year even more difficult on the workers and the individuals and families who rely on them.

So I was pleased to hear President Biden had proposed something in his infrastructure plan to help the caregiving community: his original proposal included $400 billion in federal spending for Medicaid’s home and community-based services program, a program our son Gus participates in.

That all changed, unfortunately, when the president and a group of bipartisan senators recently reached a compromise to drop this aid.

But back to Gus. Mike argued that if we held out, didn’t place Gus in a new home, and another organization did take over operations of the house Gus was at, Gus would be likely to keep the same caseworkers, staff, and doctors who already know him. Mike had a good point there. Finding doctors and dentists who are willing to treat people like Gus is not always easy.

And then it happened. On April 28, 2021, we received an email from Gus’ original home announcing that they had agreed to sell to another organization.

Mike almost broke down crying while reading the email out loud to me. “I must have been walking around worrying about it all the time,” he said later. “I guess it was weighing on me more than I thought.”

COVID restrictions were loosening up then, and after a year apart, we could finally come visit Gus again, this time with his house under new ownership.

Typically, we call the house on the drive up to let them know we’re coming — and to be sure they’d be there and didn’t have some outing planned. The day we visited, the house phone was busy. And busy. And busy. Without being able to get through on the phone, we showed up unannounced.

Gus’ house is actually a duplex, with 8 residents, four bedrooms, a living room and a kitchen on each side. That way staff members can toggle between as necessary.

When we arrived that day and rang the bell on Gus’ side, there was no answer. I worried they were out on an outing. Maybe we’d missed him.

Mike went to the other side then, and a staff member opened the door. All the residents were just finishing lunch. Two staff members were usually at each side of the duplex, but this time only one staff member was there to take care of both sides. When Mike explained that we’d tried to call, she apologized and said she’d just realized the phone was knocked off the hook. And the doorbell we’d been ringing? It was broken.

Mike and I went to Gus’ room and found him lounging on his couch, well groomed, and happy to see us. We never found out why only one staff member was there, but we could make an educated guess.

Funding home-and community-based care for the most vulnerable Americans shouldn’t be a partisan issue. Lawmakers need to do everything they can to work this aid back into the federal budget. Caregivers and the people they care for deserve it.

Erin Hawley, Digital Content Producer for Easterseals and the host of Disability Readathon, received her master’s degree in English from home. Although her story predates the global pandemic, her experience shows the ways that we can make technology and alternative education formats work for students with disabilities, and not against them.

What did you receive your master’s degree in? 

In a fully remote learning program, which was accessible to me, I received my master’s degree in English with a concentration in Multicultural and Transnational Literatures — which is one of my passions! 

What helped you make the decision to pursue your master’s degree from home?  

When I went to school for my bachelor’s degree in 2001, I lived on campus and drove my wheelchair to and from class every day. While I’m glad I had the campus life experience, it was logistically very difficult for me as I had to regularly navigate flooded or snow-covered walkways with my wheelchair and/or had to leave class early to attend to my medical needs. 

Furthermore, I also dealt with professors who refused to accommodate me in labs (I started off as a biology major!), by not allowing my nurse to assist me with certain class activities. It was, at times, very stressful. I found myself taking fewer classes each semester to make it easier on myself, so, I graduated after 5 years with a bachelor’s degree in English. 

After I graduated, I was not finding any stable jobs that aligned with my bachelor’s degree and I thought getting my master’s degree would open more opportunities. However, I knew that campus life was not a possibility for me anymore since I did not have reliable accessible transportation, and I was over the age of 21 years old resulting in me losing most of my home-care nursing hours through my medical insurance. I require 24/7 care if living by myself.  

Therefore, I started looking for online programs to pursue my master’s degree in English. At first, finding the right online program that would lead to an accessible career for me was difficult. That meant, for a long time, I lived on SSI and any freelance writing gigs I could find. I did not have the financial freedom I wanted, and I hated having to ask my folks to help pay for my student loans. 

I do have to say, in this regard, I am very privileged since a lot of families would not be able to offer financial support to relieve the pressure of student loan debt. Additionally, it’s important to note that a lot of people with disabilities may not be able to live with their parents for a myriad of reasons, whereas I was able to.  

Thankfully, in 2012, I found a reputable University that had a fantastic program where I could pursue my master’s degree in English, fully remote. So, again, with the help of my family and more student loans (I’ve just accepted the fact I will be forever in debt) — I enrolled!  

It was all worth it, because after graduating in 2016, that degree helped me land a fantastic job here at Easterseals as a Communications and Digital Content Producer, where I use my writing and researching skills daily. Additionally, my position is accessible to me, as it is fully remote! 

If receiving your master’s degree from home was not an option, would you have pursued higher education in the physical classroom?  

No, I wouldn’t be able to. Due to the nature of my disability, transportation to and from a campus is difficult. Additionally, I would not be able to live on campus either because I require 24/7 care, and my care hours have been cut due to my age and medical insurance limitations. In a nutshell, on-campus learning is not accessible to me. Remote learning is accessible to me and enabled me to pursue higher education.  

In your opinion, how does remote learning/working help the disabled community? 

My experience that led me to remote work and remote learning is common among the disabled community. Remote opportunities are vital for people like me, who cannot drive, who do not have PCAs, nurses, or a slew of other reasons that make in-person learning/work impossible. Remote options open more opportunities for education and employment to people in the disabled community. 

Remote learning/working is accessible to me and made it possible for me to achieve higher education and gainful employment. 

Unfortunately, accessibility, even when it’s officially regulated, is still largely at the discretion of nondisabled people. Even though I received services and supports from the disability department for my undergraduate degree, I still encountered ableist professors, and had difficulties navigating the campus. 

It’s important to note, that just because it’s possible to learn/work remotely, it doesn’t always mean that it’s automatically accessible. Nothing is ever free of ableism. I urge people with disabilities to constantly advocate for their accessibility needs. This is vital. Additionally, institutions and companies, with and without remote options, must constantly evaluate their accessibility. It’s crucial that institutions and companies have open communication so when a person with a disability advocates for their own accessibility needs, they are met with support and understanding, which leads to change, which leads to accessibility, which leads to progress for all people with disabilities.  

In your experience, do you think there is any difference in the quality of education — learning from home versus in the actual classroom?  

I do! I found remote learning more accessible to my needs, and so I feel like the quality was better. I retained more of what I was studying because I didn’t have to worry about all these extra ableist, inaccessible things that weighed so heavily on me during my undergraduate experience. 

I need to mention that people with different disabilities might not have the same positive experiences as I did with remote learning. Everyone learns differently, and everyone has different accessibility needs. However, in my experience, remote learning was beneficial to my accessibility and learning needs. 

How has technology enhanced the remote learning/working experience?  

Advancements in technology have made remote learning and remote working faster and more efficient for me, personally…. and so much has changed! 

When I was working towards my bachelor’s degree in 2001, I didn’t own a cell phone and Zoom didn’t even exist yet. Even when was pursuing my master’s degree in 2016, Zoom wasn’t a thing.  

In my master’s program, everything was done through message boards and email, which was both great for my physical disability and my anxiety. I was able to take my own notes and use PDFs instead of bulky and heavy textbooks. I was able to attend to my medical needs without missing class. 

Now that we have even more advanced technology, I feel like anything is possible, as long as it’s accessible.  

As noted in the Easterseals Study on the Impact of COVID-19 on People with Disabilities, many disabled people may not have access to broadband internet and technologies needed to pursue remote learning or work. It’s important we, as a society, meet those challenges for full diversity, equity, inclusion, and accessibility. At Easterseals, this is something we are committed to. 

Any thoughts on productivity levels while remote learning/working?  

Distractions at home are sometimes a struggle, which can impact productivity. I found that making lists and sticking to them daily was a huge help in my productivity. Now I probably work too hard! Which is its own problem, but I have since set a strict “no working after 6pm, unless absolutely necessary” rule that helps keep me in check. This is an aspect of self-care, which is so important.  

What are your thoughts on the importance of socializing while remote learning/working?  

I’m a complete introverted homebody, so I don’t mind missing out on a full classroom or office. I know that isn’t the case for a lot of people, which is why apps like Zoom are so vital to staying connected. 

What is your advice on how to best prioritizing mental health while remote learning/working?  

Remember to step outside or away from your desk if you need it. Set working/studying hours and stick to them. Both you and your work will be better for it. 

As the world grapples with the global pandemic, remote learning/working has become the norm. In a post-pandemic future, do you think remote learning/working will be here to stay? Why or why not?  

I really hope it does. So many opportunities became available for people looking for work, especially adults with disabilities. I do hope that young kids can start going back to school safely, because I know many are falling behind because they need that social interaction and one-on-one support in the classroom – but a remote option for college, or even high school students, should always be available. 

What are the key takeaways society can gleam from the experience of remote learning/working? 

The pandemic showed that productivity of remote work is still high, in many cases higher, because folks are more comfortable in their own homes. People don’t have to waste time and stress in traffic. Employee mental and physical well-being leads to success. 

What aspects of remote learning were the easiest to adapt to? What were the most challenging? 

Being able to learn at my own pace in a comfortable environment was the easiest to adapt to.  

The most challenging thing to adapt to while remote learning (and working!) is my loud family who doesn’t quite understand, “shh, I’m working/studying!” Somehow their voices always carry through two closed doors. Sometimes, staying focused amidst that can be a challenge. 

A story I heard on NPR’s Morning Edition was heartbreaking for me to listen to. Parent after parent interviewed for the story reported that during the pandemic their children with disabilities went months – and in some cases, more than a year – without receiving the special education services they need to learn. This also supported by a recent Easterseals study about the impact of COVID-19 on people with disabilities. From the responses of those surveyed, almost all children with significant disabilities (93%) have missed milestones due to the pandemic compared to around half (54%) of their non-disabled peers.

Our son grew up with severe cognitive, developmental and physical disabilities. Gus is 35 years old now and lives in a group home, and the skills he does have – he can push himself around using a wheelchair, he vocalizes, and he recognizes our voices when we come to visit him – are all thanks to the dedicated teachers and therapists who worked with him day after day at the public schools he attended over the years. So I could easily believe what family members were saying to NPR reporters: without the usual access to educators, therapists and in-person aides, they’ve seen their children slide backward. From the story:

More than 7 million school children receive special education services nationwide – at least they did before the pandemic. The services covered things like speech, occupational and physical therapy and behavioral counseling. But when schools closed in the spring of 2020, many of these vital services stopped. And more than a year later, in some places, they still haven’t fully restarted.

Parents interviewed for the story said they are demanding help, arguing to judges, state departments of education and even to the U.S. Department of Education that schools are legally required to do better by their students with disabilities. “In complaints filed across the country, families say their children have lost ground, and schools need to act now to make up for the vital services kids missed.”

The story ends with reporters pointing out that schools are insisting they did the best they could, and they’re pledging to families that during the new school year they’ll provide some make-up services in good faith. In the meantime, advocates are pushing back, saying that after 15 months, many children are still waiting for the help they’re legally entitled to. “And in the middle are families, frustrated and confused,” reported NPR’s Cory Turner, concluding that parents of these students are, “certain of nothing but that they want the best for their kids.”

I know exactly what they mean, and I can’t imagine what these past 18 months have been like for them. Well, actually I can imagine. I’m glad they survived it all so far, and I appreciate their willingness to talk about it all on NPR. I hope the policy makers, the boards of education, and people all over the country were listening.