A Grateful Mindset: Reflecting on My Experiences During the Pandemic

A young man, Juan, has his arm around a young woman, Alicia, at a restaurantLast year, right around this time, I wrote a post about what COVID taught me about long-distance relationships. I’m happy to report that one year later we are still going strong! I’m extremely thankful for that, and with Thanksgiving less than 2 weeks away, I’m thankful for a whole lot of other things, too.

For me, this pandemic has been a real paradox. It has brought a lot of hardship and loss, but it has also expanded my horizons. The biggest positive change? So many things I’d been doing in-person I now do virtually. No more worries about transportation, finding the right street address, getting turned around in crowds. For that, I am very thankful. Now here’s a list of other things I remain thankful for as we continue to experience this global pandemic:

  1. Making new friends. During quarantine, I began interacting with more people in Facebook groups while also joining new ones. This allowed me to meet new people and make new friends. Others I have met through other friends, and I even met one of my Facebook friends in person earlier this year.
  2. New virtual experiences. It’s funny to think that at the beginning of last year, I didn’t even know Zoom existed. I am stellar at Zoom now! My introduction to Zoom started in May 2020 when I joined a virtual book club. It then progressed into joining Hadley discussion groups with my boyfriend Juan. He joins from Houston, I join in from the Chicago area, and now we are both community members of the American Council of the Blind (ACB) and are signed up for the daily emails. These emails provide a list of community calls and we text in the morning with a list of Zoom meetings we think we’d be able to attend.
  3. Becoming acquainted with different apps. I got back into reading audio books shortly after quarantine, and now I’m almost always in the middle of reading another book. I used to go exclusively to Bookshare to get books, which means I’d use the Voice Dream Reader app to download those. But now if I can’t find a book there, I use the native Books app on my iPhone. I’d used it once or twice before, but I use it pretty regularly now. Not only can I get books for a reasonable price, but the app is pretty easy to navigate.
  4. Traveling…with precautions. Like everyone else, when the shelter in place order was first announced, I didn’t go anywhere. But as things got more relaxed, I got to travel more. Traveling is something I absolutely love to do and love to write about. Traveling leaves me with a feeling of independence, liberation, and self-confidence. I’ve flown multiple times in the past year and a half (to/from Houston to visit Juan and my trip to Cancun with my family). I even took an Amtrak train trip to spend a weekend with a friend. I hadn’t taken Amtrak in several years and had forgotten how fun it is to travel by train, even if you have to wear a mask on board.
  5. Reacquainting myself with accessible media. This isn’t something that’s talked about or written about very much — not that I’ve seen, at least. Quarantine (and even now, post-quarantine) got me in the mood to watch more audio described movies and TV shows. AudioVault.net is a great resource for users who want to download audio portions of movies. there is no visual component, just the sound of the movie and the extra audio description for those of us who can’t see the screen. AudioVault allows me to access a wider variety of things than I did before the pandemic.
  6. Rideshare drivers have better attitudes. In my own personal experience, I have pleasantly noticed rideshare drivers have become less assertive when leading me. In the past, I’d had many experiences where drivers would grab me by the wrist and attempt to practically manhandle me into their vehicles. I’m not sure if this is at all related to social distancing or anything of the sort, but as restrictions loosen up and I go out more now, I’ve noticed a different approach. Drivers are always wearing their masks, and they don’t seem as aggressive when approaching me or assisting me to their vehicles.
  7. Hosting my own ACB Community Call. When the topic of relationships came up while on an ACB community call one afternoon, the host realized that topic isn’t talked about nearly enough — and if it is, it is often in a negative light. They suggested I create a separate call about relationships to provide a safe, judgment-free space for all of us to talk, connect, share experiences and different perspectives about what it’s like to date as a blind person. Juan and I will be hosting this together and will keep it going as long as we can! He’s been wanting to do something like this together for a while.

So, while I am in no way saying I’m thankful that we are in a pandemic, for me, it does help to sit back and realize that good things have come out of it, too. Teaching myself new apps, gaining more respect for Uber drivers, making new friends, trying new things. I have a lot to feel thankful for, and I hope that on the days that things seem uncertain and the world seems scary, you can find some silver linings, too.


Advice for Job Seekers with Disabilities: “Be you. Be bold.”

illustration of a woman and a man shaking hands across a table in business attireBen Trockman is the Diversity and Inclusion Outreach Specialist at Old National Bank, a long time leader in the Easterseals community, and an ambassador. He shares with us his thoughts on National Disability Employment Awareness Month and why companies must include disability in their diversity and inclusion efforts.

What is your current position at Old National Bank? Did I hear you have another job as well? Describe your position and how your disability has or has not played a role in your career development.

Which job should I describe? My career as a Diversity and Inclusion Outreach Specialist at Old National Bank (ONB), or my job as a Councilman in the City of Evansville!? (He said with a smile)

At ONB, I serve as a Diversity and Inclusion Outreach Specialist, where I work to create a more inclusive atmosphere for people with disabilities both within our company and the communities we serve.

I run point on Achieve Ability, a program that pairs aspiring professionals with disabilities with leaders at ONB for a 10-month mentoring relationship. Our goal with Achieve Ability is to empower people with disabilities through a deep and meaningful relationship with a leader at Old National Bank.

Yep, that’s right, I’m also an elected official! I’ve always been interested in local government. I’m also an incredibly competitive person. So, when the opportunity presented itself to run for a City Council position – I was in. Not only am I able to utilize my passion for advocacy to benefit the people of the First Ward (whom I represent) I was able to harness my competitive nature to beat the other guy in the election!

I certainly wouldn’t be in my career in the Diversity, Equity, and Inclusion space without the experience of my disability. But, I’m certain the obstacles and opportunities I’ve experienced as a person with a disability has served as a positive attribute to help our company become more inclusive.

And, as a person with a disability, I’ve learned that advocacy is crucial to make progress, but also to be able to survive. I’ve advocated for inclusion at the Statehouse in Indiana, and with lawmakers in Washington DC. Therefore, I believe my disability has naturally made me – I think – into a better and stronger advocate for myself and the people I serve in the First Ward as a Councilman.

What is National Disability Employment Awareness Month (NDEAM)? Why is NDEAM important?

National Disability Employment Awareness Month is the time to promote inclusion of people with disabilities in the workforce. It is the best time of the year to share success stories, demystify myths, and inspire companies and their leaders to become more inclusive.

For the employer community, some can brag about how inclusive their workforce is already, and some can utilize this month to learn from the leaders in the industry by reading stories and attending webinars. The best and most inclusive minded employers, they use this month to share their best practices while learning additional ways to double down on the progress they’ve already made.

For the disability community, it’s a time to reflect on how far we’ve come, but also collaborate and push to make even more progress. It’s a time to share your story and use your voice for good.

What are some of the best things about hiring people with disabilities? Why should companies consider this untapped market?

We are problem solvers.

We navigate a world that was not created for us. Whether that’s as a person in a wheelchair trying to access public transportation, or a person with a visual impairment trying to complete online assessments. We have found a way to do and accomplish, each and every day. We are resilient.

As a manager, wouldn’t you want to employ problem solvers? Creative minds? I sure would!

Why is disability inclusion in the workforce crucial?

As 1/5 of the world’s population, and at a time when there are more job openings then there are candidates to fill them, employers should realize that people with disabilities, those who they might have counted out for certain positions previously can and will make a meaningful contribution.

We are fathers, daughters, and nieces. We are travelers, customers, and teammates. We are a large part of society that understands adversity. If you include us, we will help you solve problems, we will help you better connect to potential clients, and we will welcome you in as friends and family.

If you’re not including people with disabilities in your workforce, you’re missing a customer. You’re missing a contributor. You’re missing a relationship that could change the way you operate.

Can you talk about the importance of self-advocacy in life, in the workplace, and while on the job hunt?

Our society is not entirely trained to work with and understand people with disabilities. We do life a little differently. So, we must be our own advocates to teach others about what we need to be successful.

As a personal example, in life I must advocate my needs to my caregivers, whether family, friends or a home healthcare worker. I must kindly instruct them to scratch my nose, to check if a shoe is put on correctly, or how to properly restart my computer after it crashes. It happens! It’s advocacy.

While on the job, I find myself teaching my manager and coworkers about what life is like for a person with a disability. What I can’t do. What I can do. Yes, I sure can do that, boss. We live in a society that generally makes assumptions about people’s capabilities, whether you have a disability or not. Luckily, I work for a very empathetic manager and company, but I know that doesn’t happen everywhere.

Whether it’s personal or professional, you must speak up, and be a strong advocate. Because, if you don’t, you might get a pressure sore on your foot where your toe was curled under but didn’t feel it. If you don’t, then you won’t get the appropriate assistive technology you need to be successful on the job.

The life of a person with a disability is a life of an advocate.

What is your advice to a person with a disability who is seeking employment and is concerned about facing ableism while on the job hunt?

Be you. Be bold. If the employer doesn’t accept you for who you are – you don’t want them anyway.

There has been an equality reckoning in the last decade, specifically in the last three years. Companies are committing time and resources to diversity, equity, and inclusion (DEI) – and it’s transformational. If you’re applying to a company that doesn’t have a DEI focus, then you’re looking at the wrong company!

Now more than ever you have the power to seek a quality company. You have the power to prove your abilities. Be you and everything else will fall into place.

How do you think the pandemic has affected the employment status of people with disabilities? Is there a silver lining here?

There is absolutely a silver lining. Society now fully accepts virtual meetings!

That means that a sarcastic, passionate quadriplegic from Indiana can participate in a business development call with a potential partner in Minnesota – no questions asked. True story!

Prior to the pandemic, there is no way I would be asked to handle business development relationships, as the old school rule was coffee, lunches, and dinners. Lots of travel. Now, one of my colleagues can be in a room 2000 miles away visiting with a lovely not-for-profit, while I’m up on the big screen making jokes. It’s a new way of developing relationships and is tremendously beneficial for people with physical disabilities. The travel nightmare is no longer such a serious detriment to fulfilling my career.

Overall, employers have realized that remote work works. As we know, people with disabilities – specifically those with mobility challenges – have issues with access to reliable transportation and in many cases reliable caregivers. Therefore, it can be a difficult task to travel to work as consistently as an able-bodied human. Sometimes caregivers get sick. Sometimes caregivers don’t show up. Life happens.

My employer, Old National Bank has been incredibly flexible with me throughout the pandemic. I’ve been able to work at home when I needed, and that’s been life changing. ONB’s flexibility has even included times when my home health crew was sick or was a close contact. The flexibility of remote work has made it easier for me – and many others – to continue to participate fully in my duties at ONB.

Heck, even the Evansville City Council adopted a policy for remote meetings!

Can you tell me a bit about your relationship with Easterseals?

I wouldn’t be where I am today without Easterseals!

Not only have I used Easterseals for physical therapy since my injury, which has kept me healthy and motivated, I had a life-changing experience as a National Ambassador for Easterseals in 2012.

As an ambassador, I traveled across the US to advocate on behalf of Easterseals, and people and families of those with disabilities. It was a lesson in public relations that I wouldn’t soon forget. At a time when I was still in college, figuring out what I wanted to do with my life, this experience helped me realize I wanted to be in a position of advocacy, and a role that worked to influence people positively.

I certainly wouldn’t be my role at Old National Bank without Easterseals, and I likely may not have pursued a career in local government without the advocacy experience with Easterseals.

Speaking of jobs, during my ambassadorship, I created a nice bond with the public relations team at Easterseals. They realized a public relations job would be a nice fit before I had my public relations epiphany. After I completed my studies in PR & Advertising at the University of Southern Indiana, Easterseals offered me a summer internship in the PR department. The relationship came full circle!

I also served on the board of Easterseals Southwestern Indiana from 2012-2018.

So, what’s my relationship? I’d say Easterseals is in my DNA.

What do you want the world to know about working with and hiring people with disabilities?

We can be great managers, great employees, and great friends. Just like anyone else!

Most importantly, don’t be afraid to ask questions. Most people with disabilities are willing to answer even the “silly questions.” I would so much rather someone ask a question and learn – whether it’s an easy answer or a complicated one – then have someone walk away just wondering.

Ask questions. Engage. Collaborate. We are just like anyone else trying to be successful in the world!


Infrastructure and Home Healthcare: One in the Same

As our elected leaders in Washington squabble over the important details that should be included in the massive and impactful Infrastructure Bill, thousands of Americans with disabilities hold their breath. 

You see, this is the first time we have hope for the future for our immediate healthcare needs. 

Nearly 800,000 people – elderly and disabled – are waiting for home healthcare. 

An 80-year-old grandmother is caring for her elderly husband with dementia. 

A 60-year-old mother is caring for her 30-year-old son with quadriplegia. 

The last example is personal. I’m 32 years old. I have a spinal cord injury. I rely upon my 62-year-old mother for almost around-the-clock care. While we have a wonderful home healthcare agency that provides us with a nurse throughout the day, we have no evening coverage. We haven’t for 15 years. 

My mother – the strongest woman I’ve ever met – has been my evening caregiver for 15 years. Each night after she puts me to bed, I think to myself how “this is not fair,” and “we need extra help.” 

Unfortunately, home healthcare workers (RN’s, CNA’s, HHA’s) are paid incredibly less than what they could make at a hospital or a nursing home. In a world where home healthcare agencies are struggling to hire and maintain a full staff, it’s especially hard to staff evening care. So, we have gone without. 

Amplify my situation by 800,000 people. Amplify my situation by the 800,000 brothers, sisters, mothers and grandparents that will have to care for their family members. Remember that many of these people in need of care want to participate in society, independently, and continue or pursue employment. 

Personally, I work two jobs. My day job as a Diversity and Inclusion Outreach Specialist at Old National Bank, working to create a more inclusive atmosphere for people with disabilities in our company and the communities we serve. And, a part-time job as a City Councilman for the City of Evansville. 

I’m not special. I’m just a guy who has been provided enough care and opportunity to be successful. Yet, thousands of individuals just like me don’t have the care to get out of bed every morning. They don’t have the care to get them to their doctors’ appointments. Their family members don’t have a reprieve. 

Now back to the infrastructure bill. Do a quick Google search on the definition of infrastructure. “The basic physical organizational structures and facilities needed for the operation of a society or enterprise.” I don’t believe there is much argument that home health services directly amplify the operation of our society. 

Let’s help the almost 1 million people who simply want to participate in society. Let’s pass an infrastructure bill that is deeply thoughtful and will make an impact, likely on someone in your family. 

Contact your Senators, urge them to include funding for home healthcare. Contact your Congressman, do the same. Or, share this blog with a personal story, and educate your neighbors and friends on these important issues. We are all in this together, and if we advocate, share stories, and appeal to the hearts of people – we can make an impact. 


On Disability Employment: Being My Own Boss

Beth her fifth Seeing Eye dog, Luna. It’s their Seeing Eye graduation photo, taken outside the Seeing Eye School in Morristown, NJ in January, 2020I lost my sight five years before the passage of the Americans with Disabilities Act. When I could see, I was the assistant director of the Study Abroad Office at a major university. That all changed when I was diagnosed with retinopathy –a rare disease that damages the retina. Eye surgeries we hope would save my eyesight proved unsuccessful, and when I met with my boss to discuss my return to work, she was evasive, never suggesting I couldn’t come back, only that we should wait a little longer, and that I should make time to learn Braille and develop new daily living skills first. That way, she reasoned, I “wouldn’t embarrass the office.”

After that? She put me off long enough for my employment contract to lapse and she simply didn’t renew it. We never had an honest discussion about the situation. She never voiced her specific concerns, and I never had the chance to assuage them.

After that, persuading other employers to give me a job was an uphill battle. I completed classes to learn how to use a talking computer, and Mike and I started spending our Sunday evenings together scanning the “help wanted” ads in our local newspaper. “Commercial airline pilot, probably not,” he’d tease, somehow managing to lighten up the dark mood that set in when I looked for work. “But here’s one,” he’d say sincerely. “Animal poison control hotline, maybe they’d hire you.”

When I emailed the animal poison control hotline the next morning for details about the job, I didn’t mention anything about my blindness. In their email response, they explained that the job required phone and computer work. Phones and computers are good with me: phones for obvious reasons, computers because any common PC or Mac can be equipped with speech capability.

I wrote back telling them I’d be available for graveyard shift, and they enthusiastically suggested I visit the office to fill out an application.

I was driven to the interview by a friend, and as she helped me with the printed application form you could hear a hushed, angst-ridden conversation in the background. The receptionist came and went. Another woman emerged from the back room, disappeared again, then finally, without so much as greeting me, launched into a shrill speech on how the job required legal forms be filled out for every phone call that comes in. When I explained how I could use my talking computer to create digital versions of the forms, complete them on the computer and print them out, she just sighed. “We’re in the process of computerizing and hope to be done in a few months,” she said. “But right now, it just won’t work.”

A few months passed. Mike spotted the ad in the paper again. I emailed the same contact and asked for another interview. No response.

This sort of treatment happened more times than I care to tell about. I don’t take it personally anymore, but it still can be painful and confounding. I’d love to tell you that all of this has changed since the Americans with Disabilities Act was passed, but current conversations with job-seekers who have disabilities tell me this kind of experience remains more of a rule than an exception. On the face of it, things may seem to have gotten better. And it has, in some ways: since passage of the Americans with Disabilities Act in 1990, the accessibility of public spaces continues to improve. But when it comes to hiring, as with other bigotries, changing the law is one thing, changing hearts and minds is another.

So how did I ever find work? Mike surprised me one Christmas with a talking laptop for home, and I became my own boss. I started writing, submitting my written pieces to magazines and National Public Radio, getting published in bigtime magazines and newspapers and ended up regularly recording essays for WBEZ in Chicago. Those successes boosted my confidence, and I found myself eager to get on with life.

When friends suggested I write a book, I accepted the challenge. A book project would force me to finally gather my cassettes, floppy discs and other computer journal entries together in one place. If I managed to get published, maybe I could parlay my literary success into a speaking career.

My memoir, “Long Time, No See” was published by University of Illinois Press in 2003, and the success of that book led to part-time work giving guest lectures at universities, leading memoir-writing classes for older adults in Chicago, and visiting elementary schools to talk about disability awareness.

In 2005 the Vice President of Digital Communications at Easterseals National Headquarters heard one of my essays on National Public Radio and hired me as a consultant to moderate this blog. I’ve been enjoying this work ever since.

I do all my work as a consultant now. My husband Mike helps me with technology issues, I enjoy mixing my work day with teaching, editing, writing and giving occasional on-line and in-person presentations.

My advice to people with disabilities looking for work? Put yourself out there, try new things, accept challenges. Give employers a chance to see what you’re capable of. After a while, they can’t help but notice.


My Role Model for Disability Employment Awareness Month

I hope you’ll read Peter Sagal’s piece in Chicago Magazine. But if you want a quick take on Jason Benetti, check out this animated video he did for the Cerebral Palsy Foundation.

October is National Disability Employment Awareness month, and it’s World Series month, too. What better time to write this homage to a talented professional with one of the most coveted jobs in sports?

First, here is some background.

Many of the things I take on are difficult to do without being able to see. Some are even scary. I used to keep that to myself, afraid that admitting it would give others license to put me in a disability “box” and assume I have limitations that just aren’t there.

Enter sports broadcaster Jason Benetti, a role model for me since 2018. That’s the year he started doing play-by-play alongside baseball analyst Steve Stone for NBC Sports Chicago. When it comes to living above and beyond the pigeonholes people try to squeeze disabled people into, he’s my guy.

This month, Peter Sagal, the host of NPR’s “Wait Wait…Don’t Tell Me,” wrote a piece about Jason for Chicago Magazine. The title of the story, “The Storyteller of the White Sox, is followed by this fabulous tagline:

If you follow the White Sox, you likely know broadcaster Jason Benetti was born with cerebral palsy. But that’s just the start of his story.

Jason was born 10 weeks early and spent his first three months of life in neonatal intensive care. Diagnosed with cerebral palsy as a toddler, he grew up in a south suburb of Chicago. Both of his parents are White Sox fans, and for Jason, doing play-by-play for the Sox is a dream job.

That White Sox gig is by no means the only broadcasting he does. Not by a longshot. If you’re a sports fan, you might have heard him on ESPN’s alternate “StatCast” telecasts, or broadcasting other Major League Baseball games, or doing NFL games and NCAA basketball, too.

Jason is smart and funny and calls the plays so well that I, his number 1 blind fan, can picture them.

And in his Chicago Magazine article on Benetti, Peter Sagal paints a pretty good picture in words, too. Here’s how Sagal explains the way Benetti — and many other people with disabilities — have to adjust our own attitudes sometimes. From the article:

Jason knows people stare at him. They always have. Jason knows that his legs are oddly curved, that he walks with a full-body hitch in his step, and that his eyes point in two different directions, making people who don’t know him think he’s congenitally stupid. Jason is far too kind to put it this way, and too well mannered, but his remarkable career and potentially unlimited success isn’t a triumph over adversity. It’s a message to everybody who ever called him a gimp, to parents who told their children not to stare, to the flight attendant who asked him three times if he could handle the weighty duties of sitting in an exit row, and, while we’re at it, to the rival Jason beat out for a college radio sports director job who said, on a public forum, “Well, at least he will be a great magazine story.”

Ironies of ironies, Jason Benetti has inspired Peter Sagal to write a great magazine story here. Not one about “overcoming” a disability or working “despite” his disability, but one about his work in a highly-competitive field. When it comes to sports broadcasting, Benetti’s achievements speak for themselves.

My husband Mike, a big White Sox fan, read the Chicago Magazine story out loud to me so I wouldn’t have to hear it online in my talking computer’s robotic voice. When he got to a part where Sagal writes about Jason’s view of the tendency to make poster children out of people with disabilities, Mike said, “You know, I’ve always felt this way, too, but I never would have been able to articulate it like Jason Benetti does!” From the article:

I ask him about his role as a symbol of hope and triumph to the disabled and abled alike. He remains sensitive about it, especially the suspicion — fading but still lingering — that he got his chances to succeed only so he could make everybody else feel better. “You know those video clips where, say, the high school football team lets its disabled manager suit up and take the field and the other team lets him score a touchdown? I have an aversion to those. It’s like dropping food on a country in a famine. It’s nice and a good thing … but what’s going to happen after that?”

The part I myself related to the most came towards the end of the article, when friends from his days at Syracuse University chime in. One of them points out that back in college, Jason tripped an fell more than others did:

And we were walking one night home from a party, and he tripped and fell. And none of us cared — it was very normal. It’s not like he was being bullied by anyone. But that would ruin him for 48 hours. We would have to go home. … He was trying so hard to not have his disability be a factor. When it did, he … got angry.”

The angry part? I’m afraid that’s the part I could especially relate to. When coming back home after a walk with my Seeing Eye dog, I sometimes grope for a while before finding the door handle to get back inside. When crossing the streets here, we aren’t always exactly in the middle of the crosswalk. I know where the mailbox is, but I don’t always find the slot to put the letters in right away. I’m fine with making mistakes like that…unless someone sees me do them. Then I get flustered, worried how they’re judging me, frustrated. I read that last excerpt over again and see that my role model’s old college friend used past tense when mentioning Jason’s reaction: he got angry. That implies he doesn’t get that way anymore. Time for me to make that change, too. As this 2021 baseball season comes to a close, Jason and I have enough to feel frustrated and vulnerable and angry about: the Chicago White Sox didn’t make it past the first round of the playoffs!


Home and Community-Based Services Can’t Wait

Erin Hawley outside on a sunny day

Erin Hawley

I have Muscular Dystrophy which requires full care for all activities of daily living. Through home and community-based services in New Jersey, I am able to live in the community rather than an institution. I have a full-time job at Easterseals, where I work with the national staff as a Digital Content Producer. I also work on video game accessibility and disability representation as a freelance consultant. Beyond work, I spend time with my family and my loving partner of almost 7 years. I love reading and just redecorated my bedroom to look like a Victorian library – a dream I’ve had since I was a little girl. My family just got a Yorkshire Terrier named Madelyn who loves to run around my room and jump on my wheelchair. On the weekends, I play games with my niece who just started 5th grade, and help her with her homework.

I share all of that with you to let you understand my humanity. To show you that I am not just a number on a page, or a statistic. My life has value, as all lives do. If I lived in an institution, I would not be able to do any of the things I cherish. My physical and mental well-being would be in jeopardy. If you truly believed in the pursuit of life, liberty, and happiness for all, then do the right thing and fully fund home and community-based services. We need that funding so people like me, who are disabled and have great plans for their future, can realize those dreams.

This issue doesn’t just impact people with disabilities – it also impacts their loved ones and professional caretakers. Higher wages are needed to meet the demand of people living in the community. We can’t meet that demand if we don’t receive the full funding. Without it, that means even longer waitlists, and even more people dying in institutions. During the height of COVID, we lost so many people living in these congregate settings, making the demand for community care more pressing than ever.

Segregation is injustice. The disability community is paying attention to the vote. Make the right choice not just for us, but for the entire nation – because only a nation that is more just and equal is truly united.



Mature Workers: Hire for the Attitude, Train for the Skill

 A mature worker hanging clothesAn interview with Crystal Odom-McKinney, National Director of Senior Community Service Employment Programs (SCSEP), and Max Zielinski, Assistant National Director of  SCSEP at Easterseals discussing the importance of SCSEP services at Easterseals. Through this transitional employment program, Easterseals partners with community-based non-profit organizations and government agencies (host agencies) to provide participants with training opportunities to update their skills. During time in SCSEP, job seekers work with Easterseals staff to target and achieve personal employment goals. 

What is the Senior Community Service Employment Program (SCSEP) at Easterseals?  

Crystal: The Senior Community Services Employment Program (SCSEP) is a federally funded program through the United States Department of Labor that assists low-income mature job-seekers, 55-year-old or older, in building their skills to becoming employed in the workforce. This government funded program has been around since 1965. Easterseals has been a part of SCSEP for the past 18 years.  

What are some of the best things about hiring older workers? Why should companies consider this untapped market?  

Crystal: Mature workers are reliable, they are dependable, experienced, and trustworthy. They add so much value to any company or organization. That diversity in the workforce is crucial. A lot of times mature job-seekers are cross-trained over the younger generation with the soft skills that are especially important in the workforce such as being extremely punctual, and having interpersonal people skills. That is an area that our mature job-seekers can ace their younger counterparts in.  

Max: Also, their life experiences, just bring a different perspective. Mature job-seekers have been through many different life events, and they just have a different view on things. A company or organization can tap in on that and come at any issue with this different point of view. 

A lot of our folks are very punctual; they will show up maybe 15 minutes to a half hour before they are supposed to be at a meeting. That’s awesome! They bring a zest for being involved. That is a fantastic asset to bring to a company – wanting to be there, wanting to learn.  

Crystal: Hire for the attitude and train for the skill.  

Max: Our folks have great attitudes, and they are very trainable. They love to learn new stuff. They know the importance of learning because that’s how you keep going in life. I look at it this way – they may think they are old, but, from the perspective of the universe, we are all super young.  

Crystal: Mature job seekers want to be active and vibrant; they want to be involved in community engagement. And they want to fulfill that purpose. A lot of careers that our SCSEP participants are closely connected to, during this season in their life, are around community service, non-profit, and social services—because they want to give back. It’s a sense of belonging that they never knew they had. Because they love to give back and they love to help. They really do well in those environments. 

What is your advice to a mature job-seeker who is concerned that their age might work against them while on the job hunt? 

Max: We tell job seekers that you have a lot to offer an employer. Highlight what you bring to the table– years of experience, being on time, dedication to getting the job done. We always tell mature seekers to know that they are an asset, rather than an “older worker.” I always tell job-seekers that it’s a numbers game. The more places you apply to, the closer you get to your launching point. The next job could be a stepping stone to another career! If there is one thing the SCSEP program does, it really works to improve people’s confidence and let them know that they have a lot of self-worth to bring back to the workforce. That confidence is what we work to instill in everybody.  

Crystal: The job market is amazing right now. There are jobs out there. Think about everything that you bring to the table. Your wisdom, your experience and your patience highlight valued assets in the workforce. We hold up a mirror to our job-seekers and tell them this is how valuable you are, and this is what you bring to the plate. 

How has the pandemic affected the employment status of the aging community in the SCSEP programs?  

Crystal: During the pandemic, our Easterseals staff had to pivot to working virtually. What’s more amazing is that our job seekers also pivoted to virtual as well. Many of our mature job seekers learned Teams, and Zoom. Easterseals Oregon has a weekly town hall where over 100 mature job seekers are on Zoom, in the chat box, and actively participating. Our mature job seekers have bounced into a state of resiliency. That was really a testament to how they learned and how they continue to learn. 

Moving forward with the job market, it’s been interesting. Depending on how open your state is, job-seekers are pivoting to a virtual experience. We are working more to make sure their toolboxes are equipped with the skills necessary to become employable, that relates to virtual employment. We have training and workshops on how to show up to virtual meetings, and have a Zoom background. We also have mature trainers who can speak side by side about their experiences in navigating through the pandemic. We have had a lot of successes, but we still have quite a way to go. 

Has the pandemic shown that there is a technology disparity among mature job-seekers? 

Max: Yes. The pandemic highlighted that our population definitely needs more access to technology because, for some of them, getting on to the internet might be an issue. Going forward, we need to make sure we can find funding or find opportunities for folks to get computers. 

In New Jersey, we were really fortunate. We found an organization that was started by high school student – he refurbishes computers, and we were able to get 50 of our participants computers so that they could get on the internet. We are looking to see if we can expand that into our New York program.  

As far as employment, we did have a streak going prior to the pandemic – we were getting a participant a job a day for 5 straight years! When the pandemic hit, we were getting a job every other day. In 2021, we are getting back on track with getting a job a day for our participants, which is exciting. We are keeping our fingers crossed that continues.  

Is there a link between any SCSEP programs and the push for Congress to pass the infrastructure bill that would fully fund Home and Community-based services? Would any of the SCSEP programs be enhanced if this bill were to be passed? 

Max: Improving the internet and cyber infrastructure would open that up to more communities and give our folks more opportunities to get involved, to look for employment, and to be able to be more a part of their communities. In the Build Back Better Agenda, there is funding for the SCSEP programs in there and hopefully it will get through appropriations – keeping our fingers crossed. Moving forward, hopefully there is more funding coming down the pipeline for employment-based programs that SCSEP does benefit from. 

Crystal: Additionally, when infrastructure of our roads is improved, that will enable our job-seekers to be more accessible to opportunities in their communities. 

What SCSEP programs at Easterseals are you most proud of and why? 

Max: All of them. I am proud of all our programs. Since we are a national organization, I look at all of our programs like a family. They all bring different things to the table, but the part that really keeps me motivated and going is getting to share in their triumphs. Meeting with the participants that we serve, and listening to their stories, getting to talk to them, and let them know that we are here at the national level to help. 

What do you hope to see next for the SCSEP programs? 

Max: We are always looking at ways to increase the reach of SCSEP because, with the funding that we get, we are serving probably less than 1% of the population that would be eligible for SCSEP. So, there are a lot of people out there who probably don’t know about the program, or we can’t serve them because we don’t have the funding to do that. It’s kind of a shame because we are the only program that serves older Americans and mature workers.  

The population does seem to be getting older every day. More people are realizing that retiring at 65 is just not the reality anymore. People are living a lot longer now, so you can be engaged and continue on and have a fruitful life.  

What do you want mature job-seekers to know about SCSEP services at Easterseals? 

Crystal: Easterseals is here, and here to stay. We are here to help break barriers as it relates to mature job seekers and get them what they need by whatever means necessary — access to technology, increased access to training, and employment opportunities. We are here to dispel myths and work directly with employers to educate them around the value of mature workers and workers with disabilities, while celebrating our continued victories of employment and training opportunities.


Listen Today: How an Advocate Saw Her Future as a Young Person with a Disability

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. A young lady wearing glasses and a cloth face mask with flower printI 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.


The Makings of an Accessible Vacation Resort Experience

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!!


Caregivers Deserve Better

Beth and Seeing Eye Dog Luna posing in a snowy park, Beth in a long red winter coat.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.