From Bah Humbug to Beautiful: An Accessible Christmas Carol

Actor Larry Yando in the role of Ebenezer Scrooge, holding a hat, wearing a grey coat and scarf, smiling and laughing

Credit: goodmantheatre.org

Back in November my 26-year-old niece Anita texted me:

Beth, quick question for you. Do you have any interest in possibly going to see A Christmas Carol at Goodman Theater?

Here in Chicago, some families go to the Goodman to see A Christmas Carol every year. How pedestrian! Truth be told, I kind of sort of rolled my eyes at Anita’s suggestion. Bah humbug! I’d seen A Christmas Carol done at community theater in the past, and I like watching it on TV during the holidays, but I had never ever wanted to join the throngs of everyday people who go to see it at a theater and thought it best I keep it that way.

But then came the back-and-forth texts. Anita’s girlfriend Kelly would be coming as well. They had chosen a date that offered a pre-show audio tour for blind people.

Anita grew up around disability. I became blind before she was born, and she and her mom lived in the same town we did when we were raising our son Gus, who was born with physical and developmental disabilities and uses a wheelchair. Her father is from Jamaica, her mother is white, and she’s all about diversity and inclusion!

And then there’s this: Anita and Kelly are a fun couple, so smart and witty that we share a lot of laughs whenever we’re together. And, okay, it was pretty flattering to think they’d go out of their way to spend an afternoon at the theater with their old blind great aunt Beth. No more bah humbugs! I said yes. And am I glad I did!

Tickets for A Christmas Carol are usually quite expensive, but in its efforts to be “a theater for all” and a “place where diverse audiences experience extraordinary productions,” Goodman offers reduced-price tickets to people who attend the touch tours. Anita and Kelly were accompanying their blind old great-aunt Beth, so they got the same discount I did.

Seeing Eye dog Luna guided me from home to the theater to meet Anita and Kelly last Saturday, I showed my proof-of-double-vaccination card with pride, and handed over my ticket. “Box seats!” The ticket-taker sounded impressed.

When Goodman’s’ house manager/accessibility coordinator Andy Wilson greeted me in the lobby, he explained they save those box seats for people who might find accessing regular theater seats difficult. “Your box is on the main floor,” he explained. “No stairs!” Bonus: Box seats are great for social distancing, and Black Lab Luna could sprawl during the show without bothering anyone else.

Andy directed Luna and me to our starting point in the lobby, where they had three of the understudies’ costumes available for me to touch (the ones the actors would be wearing were not available for obvious reasons). I appreciated having the costumes displayed on dressmaker dummies — that way I could feel the fabrics with structure and imagine how they might look — and fit. A costumer from the show was on hand to give me the back story on each piece. My favorite? A top and hoop skirt worn by the Ghost of Christmas Present. I was encouraged to touch the fabric, the stitching, the piping, the braids, the brocades, the hoops, everything.

Anita and Kelly showed up in time to enjoy some of the costumes, and from there the two of them escorted me into the theater to meet some of the main actors in the play for the pre-show. One of them was the one playing the Ghost of Christmas Present — the one who’d be wearing the hoop skirt. “I’m supposed to look like a Christmas tree,” she laughed, then went on to explain the real reason behind the hoop skirt. “It hides the harness I have to wear.”

Harness?

Yes, harness. She wears it to hold up the weight of the Christmas tree hanging off her shoulders. “A couple other actors wear harnesses under their costumes, too,” she added, explaining that Scrooge and the Ghost of Christmas Past actually fly during the show. “They need harnesses on to do that.” My mind went right to my childhood, when I marveled at the TV presentation of Sandy Duncan flying in the Broadway revival of Peter Pan.

The actors chatted briefly about their role in the play, their appearance and/or physicality and how they might approach that in their portrayal. The Ghost of Christmas Present described herself as having “brown skin and black hair” and told us she plays a charwoman near the end of the play, too. Each actor gave us a few lines from the play and it was astonishing to hear the Ghost of Christmas Present sing one of her lighthearted lines from when she’s in her hoop skirt, then transform to a baritone charwoman for that later scene…all right before my very ears!

The last actor to describe themselves was the Ghost of Christmas Past. You can get a great example of how generous the actors are with their descriptions hear by listening to a recording of Lucky Stiff describing what it’s like to dress as the Ghost of Christmas Past for every performance. (Use the link to the audio player below.)

Ghost of Christmas Past Goodman Touch Tour

When Goodman’s Andy Wilson explained that they switch up the performance every year, I couldn’t help but laugh. “Sounds like this one’s gonna be like Cirque du Soleil!”

    • Musicians on stage throughout the play portray buskers on the street outside of Scrooge’s office –sounded to me like a bass, a French horn, a violin, a recorder, an acoustic guitar, even an…accordion! So nice to hear live music on stage again.
    • Rather than Scrooge having a nephew Fred, in this version he has a niece Frida who invites Scrooge over every Christmas.
    • The party where all the dancing goes on is traditionally at Mr. Fezziwig’s place, (he’s a businessman who uses Scrooge as his banker) but in this version the business is owned by two women. Mrs. Fezziwig & Mrs. Fezziwig dance together in this scene.
    • Tiny Tim is portrayed by a 12-year-old Chicago girl whose parents immigrated here from India
    • And lest we forget: some of the characters fly — Scrooge flies with Lucky, the Ghost of Christmas Past.

Anita, Kelly and I learned most of what I’m reporting above from going to that “audio tour” before the show. During the pre-show the actors explained to me exactly when the flying scene would happen, how the flying contraption works, how heavy it is to wear and so on. Audio describer Jason Harrington jumped on stage at one point to walk around it and describe the setting and scene changes — so helpful.

Forgive me for going on and on about this. I had a wonderful time with Kelly and Anita, they both were so kind-hearted, totally comfortable around me and very helpful, too: ordering coffee before the show, snacks during intermission and then a Lyft ride home afterwards.

Just heard this morning that Goodman has cancelled some of their upcoming shows due to the surge of the omicron virus, so I’m especially glad we got there when we did. Time with family at A Christmas Carol got me into the Christmas spirit this year, a happy feeling that won’t go away.

 

What is National Special Education Day? Why is it Critical That We Observe it?

Erika WatsonIn celebration of National Special Education Day, Team Easterseals is in conversation with Erika Watson, the National Director Childhood Development, Education, and Equity at the Easterseals National Office. 

What is National Special Education Day? Why is it critical that we observe it? 

National Special Education Day was first celebrated in 2005, which was the 30th anniversary of the Individuals with Disabilities Education Act (IDEA). It is important to acknowledge Special Education Day because nearly 14% of all public-school children—7.3 million children—receive special education services guaranteed to them by IDEA.  

That is 7.3 million reasons to honor the hard work, the wins, and the possibilities of young people on their unique pathway toward fulfilling their potential. It is important that we observe this day to bring attention and awareness to the special education system to ensure that the most vulnerable students among us have access to everything that they need to be successful. It is important to highlight the children, people and families that are beneficiaries of this work. 

What is The Black Child Fund at Easterseals? 

The Black Child Fund was launched by Easterseals in the aftermath of George Floyd’s murder and the BLM movement from summer 2020. The Black Child Fund is focused on the intersectionality of race and disability and aspires to disrupt systems of educational inequity and improve long term outcomes for BIPOC youth with disabilities.  

Easterseals aspires to be a thought leader and convener of people, ideas, and resources aimed at mitigating disparities that exist for BIPOC youth with disabilities in educational outcomes and social indicators of health and wellbeing. 

What are the disparities that Black students and Black students with disabilities face in education? How is The Black Child Fund working to end those disparities?    

Black students are the largest population in the special education system, and the most underserved. About 14% of all public-school students receive special education services. Of that 14% the largest percentage of those students identify as Black/African American. Despite being over-represented in the special education system, outcomes for Black children receiving special education services lag behind those of every other group. For example, 72% of all special education students graduate high school with a regular diploma. However, only 65% of Black children who receive special education services graduate high school with a regular diploma.  

While disability does not occur more frequently in the Black community, Black children are often over identified as having behavior problems or not being school ready thus creating a pipeline of Black students into the special education system that often does not serve them equitably.  

The Black Child Fund seeks to elevate the cultural competence of special education advocates, teachers, and practitioners so that all professionals serving BIPOC students with disabilities are doing so through a culturally responsive lens. 

Why is this work important to you? 

This work is important to me because I fundamentally believe that education is the most powerful lever that we have to disrupt the effects of generational poverty within communities of color. Full Stop. Period.  

If I can be even more pointed about it, it is the education of not all young people, but specifically the education of girl children because when we change the trajectory of our own lives, we then change the trajectory of our children’s lives. If you really want to disrupt the effects of generational poverty, educate young girls of color. 

What is a milestone of special education that you are most excited about? Why? 

The willingness of people and institutions to have a reckoning with the racial injustices of our current system. I believe that the soil is fertile and now is the time to have hard conversations about racial inequalities. People are open to hearing, taking action and wanting to be a part of the change that we want to see in our culture and in our communities.  

Where must special education improve?  

We must do a better job of educating BIPOC youth with special education needs. Culturally inclusive and culturally responsive pedagogy must become ubiquitous within the special education system.   

What do you see next for the education system to ensure education is available and equitable to all children with disabilities? 

My hope is that meaningful funding will follow all the goodwill and good intentions. Small ideas that are working well in pockets still need a larger platform. We need resources so that we can scale them to benefit all children. 

How has the pandemic shaped the experience for children with disabilities and their education? What has changed for them, and what issues are most pressing as we continue through the pandemic?   

There is no doubt that all students suffered academically as a result of COVID. Learning loss for all students is real. Access to services has been the prevailing challenge through the pandemic and this problem persists even though students are back to in-person learning. 

The number one problem that we saw as a result of the pandemic was that 3-5 million K-12 students received no formal education at all starting in March of 2020 through the fall of this year when we went back to in-person schooling.  

It has been nightmarishly hard for everyone to manage education through COVID, and special education populations have felt this more acutely then just about any other unique group. When general education gets a cold, special education gets pneumonia. And I would suggest that special education in poor and rural communities is where the pandemic has done its biggest damage. 

It has been nightmarishly hard for educational growth and attainment. The learning deficits are tremendous. We are seeing catastrophic numbers in educational outcomes in the special education population during the pandemic because students have been fundamentally disconnected from education and services that are provided through the local education authority. 

What if I’m a student with an Individualized Education Plan (IEP)? That means I am not getting any of the services that my IEP suggests that I have. So, not only am I not getting formal education, but I am also not getting my speech therapy, I am not getting my behavioral therapy, I am not getting all the educational services that my IEP suggests that I need. 

Educators and administrators are working hard to try to figure out how to solve these problems for our children, and there are not a lot of easy solutions and pathways to success, and access to opportunities when you layer on issues of poverty,  

We haven’t recovered. I can’t say what special education looks like coming out of COVID, because we’re not out. We’re still figuring it out.  

What message do you have for parents? What do you suggest for resources via Easterseals and/or otherwise?  

Find your tribe. I would love for Easterseals to be a part of everybody’s tribe. Our services are either free or pretty cost neutral even if you are uninsured or use Medicaid. These services are available to everyone.  

Also, consider a special education advocate. You can reach out to Easterseals to find a Special Education Advocate in your community. These are people who know the system very well and who can be your ombudsperson in those conversations that you have with your school administrators about your students’ IEP or 504. Special Education Advocates are a fountain of knowledge and a wealth of resources, and they connect you to other resources in your community. If you do not have a Special Education Advocate, get one! 

I also encourage parents to reach out to Easterseals or other organizations to find an affinity group for yourself so that you can learn to become the strongest, most effective advocate for your child possible. In doing so, you will also teach your child to become a strong and effective self-advocate. 

Also, always remember that the squeaky wheel gets the grease. Don’t be afraid of being a constant presence at your child’s school, and in your teacher’s email inbox. You are their partner, and no one knows your child better than you. You need to work with your education partners to make sure that your child is getting everything they need at school, and that you are doing everything at home to make sure that there is a consistent focus on education both at home and at school.  

Your child should not feel that there is one set of expectations at home and another set of expectations at school. You want to have relationships with your educators and school administrators.  

Learn to be an advocate for your child, and this will teach your child to be a self-advocate.  

Anything else you would like to add?  

I encourage more people to reach out to Easterseals. We are here to help. We want to bring more people into this tent. Right now, there is a big tent and there are not enough of us in it. The best way to make progress is to bring in more people and more resources into the tent. Let’s get to work! 

 

Self-Advocating for Reasonable Accommodations: Four Women Share their Stories Tonight

A pair of sunglasses on a white desk next to a keyboard and mouse.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.

 

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.