Tonight, Thursday, November 18, 2021, I will be one of four women with disabilities on an hour-long free Zoom panel sponsored by the Skokie Public Library:

Self Advocacy and the ADA–Online Event: Personal Perspectives, Challenges, and Success Stories
Thursday, November 18, 2021
7:00 pm – 8:00 pm
Zoom Event

What does self-advocacy look like when navigating the world with a disability? Four panelists from different fields share stories of how they’ve advocated for reasonable accommodations.

Panelists will share lessons learned and provide tips on fighting for more fair and just treatment in the workplace and beyond.

The three panelists with me are Deirdre Keane, a teacher/librarian who was born with a hearing loss and got a cochlear implant during her freshman year in college; Michele Lee, an experienced finance professional who uses a wheelchair; and Tina Childress, a late-deafened adult with bilateral cochlear implants. The four of us will each be given 10 minutes to tell a few personal stories of advocating for ourselves, leaving time afterwards for discussion and questions. My plan is to talk fast and describe three experiences, one a success, another a collaboration, and the third a failure:

1. Appearing at a Chicago city court after a cab driver refused me a ride with my Seeing eye dog.
2. Graduating from training to volunteer with hospice and never being paired with a patient
3. Challenges I faced when the health club I’d been swimming at closed due to COVID and no other indoor pool facility would allow my Seeing Eye dog to lead me poolside to swim laps.

The hour-long panel is free, it will be hosted on Zoom on Thursday, November 18 at 7pm CST, and you can register for it here. There’s a spot on the registration form to enter a library card number, but a library card number is NOT required to register. You can attend free of charge even if you are not a member of the Skokie Public Library. Questions? Call the library at 847-673-7774.

Last 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.

Ben 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!

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. 

I 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.