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.

A story published earlier this month in HR Dive (a newsletter for people in the Human Resources industry ) reported that the unemployment rate for people with disabilities hit a 7-year high last year. And that’s saying something – it’s not like the outlet for people with disabilities getting a job was all that great before the pandemic, either.

According to the U.S. Bureau of Labor Statistics (BLS), back in 2019 only 19.3% of working-age people who had disabilities had a job. The number of people with disabilities working last year dropped to 17.9%. In its analysis, BLS pointed out that “Persons with a disability were more likely to work in service occupations and occupations involving production, transportation and material moving in 2020 than those without disabilities.” The analysis said employment in leisure and hospitality fell by 8.2 million jobs in the first two months of the pandemic, and 8.3% of employed persons with a disability were working in those fields before 2020.

Americans with disabilities have lagged far behind their peers in employment for far too long. Even before the pandemic, only two in ten people with disabilities were participating in the workforce (compared to seven in ten for people without disabilities). Despite efforts to help increase employment for people with disabilities (including the passage of the historic Rehabilitation Act of 1973) jobseekers with disabilities continue to face double digit unemployment.

For individuals with disabilities whose major challenge is getting to work (accessible public transportation, ADA compliance in the workplace and so on) this past year might change things for the better. COVID-19 risks motivated many employers to add work-from home options for workers and adopt virtual hiring processes. From the HR Dive article:

That adoption is expected to continue well into 2021. Combined with other measures to reduce bias in the hiring process, this change could vastly improve accessibility for individuals with disabilities.

The article even suggested that the impact of remote work in 2020 could encourage employers to consider work-at-home arrangements as reasonable accommodations under the Americans with Disabilities Act. I hope they’re right.

I love it when organizations or businesses go out of their way to ask older adults and/or people with disabilities what we think, don’t you? So when I found out the National Aging and Disability Transportation Center (NADTC) had launched a survey to hear about our experiences accessing and using local transportation options, I filled it out right away. From the NADTC web site:

As part of continuing efforts to identify transportation access, usage and disparities that impact diverse groups, the National Aging and Disability Transportation Center (NADTC) has launched a national equity, diversity and inclusion transportation survey. The survey will gauge opinions and obtain information from a representative sample of racially, ethnically and culturally diverse older adults, people with disabilities and family caregivers.

The survey is accessible and only took ten minutes to fill out — a very small chunk of my time to spend to be part of a study that may help with some of the public transportation issues I run into living in a big city. I urge you to join me and feel good about helping an organization make transportation options work better…for all of us!

I am pleased to have 14-year-old guest blogger Anja Herrman back with us today. I got to know Anja very 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 were 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 disability activist, Dj Mermaid is in high school now and goes by her real name.

by Anja Herrman

Marie Curie. Madeline Albright. Rosa Parks. Michelle Obama. Just a few of the role models I’ve looked up to in my fourteen years of life, all for different reasons: their perseverance, courage, bravery and strength, to name a few. As a young girl, I had these women to emulate and to champion.

There’s just one problem. While these women are all incredible in their own right and this is not to be dismissed, none of them openly identify as disabled. Growing up, whenever I looked for role models to help guide me along in my journey from childhood to adolescence, I never felt like I had people who “got me.” None of them understood the deep nuances of my life, so the “guidance” they provided for other pre-teens never rung true for me. These women existed, I just couldn’t find them, even though I spent a long time searching.

What to do? Well, if I couldn’t find any role models, I told myself, then I’ll be a role model, both for me, but most importantly, those who come after me. I was nine when I made this resolution, and over the past half decade (wow, I’m old!) I’ve been working on this promise to myself: to be a good role model and make the world more accessible and equal for people with disabilities. I want to forge a path that, if I’m lucky, others may choose to follow.

One such opportunity arose almost exactly a year ago (curse you, COVID, for drying up all of my speaking opportunities!) when I was asked to be a keynote speaker at an International Women’s Day event in Chicago. The speech was supposed to focus on advocacy and the disability community. Okay, piece of cake, I thought. The catch? The speech also had to be tailored to the business community. Which, in hindsight, makes sense, since it was hosted at an advertising firm.

But here’s the thing: I had absolutely no idea how to do that. Hence, for the very first time in my life as a writer, I found myself in a battle against every writer’s worst nightmare: writer’s block. Intense pressure doesn’t help, but what would you expect from a girl who compares herself to a lauded Secretary of State, a First Lady who is the literal definition of an icon, a famed scientist and a civil rights pioneer?

So, to conquer the writer’s block, I went back to basics and wrote a speech explaining what right I had to be speaking up on that stage. Using what I’ve learned from my life as a disabled adolescent fighting for equality, I crafted what I thought was a good speech and then I moved on to something else. I put the speech on the back burner, letting it simmer in my subconscious like a soup. Instead, I worried about other tasks: mainly the French test coming up in a few days.

Pro Tip: Another surefire way to get writer’s block is by over-critiquing. Critiquing beyond the point of being constructive stifles ideas.

The event drew nearer. So near that before I knew it I was sitting in the passenger seat of our car putting my mascara on while my mom was driving, and my brother was playing some sort of game on his phone, probably Minecraft…is that even a thing anymore?

Looking back, it’s a miracle I didn’t poke my eye out with a mascara wand while going over my speech one last time.

We got out of the car, raced up to the event space and, thankfully, I had a half an hour before I had to speak. So begins all the pre-event tests like checking the ramp to make sure I don’t tip before I have to speak (can you think of anything more embarrassing?) and introducing myself to all the other speakers and wishing them luck.

Before I know it, it’s showtime!

All the way through my speech, I imagine a little tiny me, with her pigtails and AFO’s sitting in the audience, biting her lip with anticipation. I look out, and notice that tiny Anja is laughing at the funny parts, and solemn at the serious parts, which means everything is landing exactly as I wanted it to back when I was sitting at home in my ratty pajama top writing the speech.

I conclude the speech. Over the roar of applause, I look into my younger self’s eyes, and see that she’s proud of me, and I know that I’ve succeeded in my quest, to be the role model that I needed.

And, guiding another person down the path to their own definition of success, well, that feels pretty great too.