Photo of then-new Seeing Eye dog Luna’s first and last in-person school visits in early March, 2020, before you-know-what happened.

During presentations I give about disability awareness, one thing I like to get across to the school kids is that people with disabilities enjoy — and engage in — a lot of the same things they do. We just develop different skills (and sometimes use different “helping tools”) to achieve our goals.

This past May, Luna and I did what will likely be our last Zoom presentation for 3rd graders this school year. Our presentation was scheduled for late morning, and the weather was so beautiful in Chicago that a dear neighbor had invited me to come swim laps at his condominium’s outdoor pool around noon.

Could I make it to my friend’s pool on time? Well, yes. As long as I wore my swimsuit to the presentation. The 3rd graders would only see my head and shoulders on Zoom, right?

My Zoom talk that morning opened with a big announcement: this would mark the first time I’ve ever worn a swimsuit to a school presentation. The kids were all muted, and without being able to see them, I chose to believe they found that absolutely hilarious. “Right after this presentation is over, I’m going swimming outside!”

My mentioning swimsuits and swimming provided an instant connection between me and these very bright eight and nine-year-olds. Some of their questions:

• How long have you been swimming?
• What was your favorite activity when you could see, and what is your favorite activity now
• Where’d you learn to swim?
• How can you Zoom if you can’t see?
• How can you drive?
• How many Seeing Eye dogs have you had?
• Did any of your dog’s ever bite someone?
• Have any of your dog’s gotten sick?
• Did you ever use a stick?
• How many books have you wrote?
• Are you writing any books now?
• Did you write those books when you were blind, or did you write them all when you were like us and still in school and you could see?
• Did you have to learn a lot of new things after you were blind?
• How many years have you been blind?
• How many years have you been swimming?

Doing Zoom presentations from the comforts of home has its benefits: no need to arrange for rides to faraway suburban schools, don’t have to wake up early, it’s okay to dress casual, you don’t have to pack up your “helping tools” to bring along, Zooming takes less time, allowing the Zoomer to fit more things into their day…like swimming laps outside.

And yet.

I still prefer being in the room with the kids I’m visiting. I miss hearing their ‘ooh’s and ‘ah’s when my Seeing Eye dog leads me into their classroom, the murmur of questions they ask even before the presentation begins, hearing “me! Me! Me!” when they hold up their hands to ask questions afterwards, and, especially, the joy they express when I take Luna’s harness off afterwards and let them pet her. I’m holding out hope that at least some of the visits to schools next year will be in person, but who knows? Maybe the schools will decide sponsoring Zoom meetings for authors is easier for them. Like so many other issues during these pre-post-pandemic times, I guess we’ll just have to wait and see.

Or wait and hear!

Alicia’s back from her trip to reunite with her boyfriend in Houston — here she is with a first-person account of what it’s like to find assistance at airports now that COVID-19 regulations are loosening up.

When reunion day finally arrived, I had no trouble getting up well before sunrise to catch an early flight at Chicago’s Midway Airport. I used VoiceOver on my iPhone to send a text to Juan, as I normally do when I wake up. My usual “Good morning’ text was then followed by, “We made it! The day is finally here!”

I arrived at Midway two hours before my flight was to depart, but the airport appeared to be understaffed and experiencing an unusually high request for assistance. Even under normal circumstances I am quite the anxious traveler, and that morning I was convinced I’d miss my flight. Using VoiceOver on my iPhone to navigate over to Juan’s name, I called him.

“No one has come to get me yet and help,” I said, getting straight to the point as soon as he answered.

“Yeah, now they typically wait until it’s closer to boarding time,” he replied calmly, not understanding the magnitude of the situation.

”No, you don’t understand. I haven’t even made it through security,” I said. “I’m pretty sure I’m going to miss this flight.”

”You’re not going to miss the flight,” he said. He didn’t sound dismissive, and he wasn’t brushing off my concerns. His calming and patient nature usually helps, but this morning I was not having it. I gave him the time of the next flight just in case. He told me to keep him updated and not to worry. “It will all be okay.”

Right as I hung up, an airline employee approached me to ask what time my flight was. I told her and added, “Pre-boarding is in 20 minutes!” She said the same thing Juan did — that everything would be okay and I was going to make this flight.

I can’t describe the feeling of relief that washed over me when I finally heard my name called. I sent a text to Juan using Siri this time, texting from my talking Apple Watch rather than my phone. “I’m on my way to security,” I said. “You’re right, I’m going to make the flight.”

Similar to my last flying experience from Midway, I was placed in a wheelchair, and they zoomed me right along to the security line. The TSA agent couldn’t figure out why I wasn’t walking through the metal detector and did not appear to know I was blind. I’m not sure if that’s because I was in a wheelchair, or if she was not previously informed.

I heard someone behind me say, “She needs help, she can’t see!” After that, the TSA agent gave me verbal directions, and off we went. After making the usual stops to the family style restroom and a place to refill my water bottle, I arrived at the gate with no time to spare.

It was time to board!

A flight attendant approached me at the gate and introduced herself. I introduced myself as well, smiled with relief, and had to add, “I’m so happy to be here, I thought I was going to miss this flight.”

”You’re here, and you have plenty of time to board,” she replied, her voice reassuring and not at all patronizing or dismissive. She led me onto the jetway, and I couldn’t stop smiling as she guided me to my seat. “Do you have a preference as to where you sit?” she asked as we stopped by a row of seats.

”Wherever gets me off the plane faster when it lands!” I said. She laughed and placed me in the second row.

“Would you like a Braille copy of the safety instructions?” she asked. I declined. They always announce the safety instructions out loud, and I find the announcements very helpful. I didn’t feel like I needed Braille instructions, but I loved that this was an option.

Upon landing, I used VoiceOver to type a text to Juan that I had landed. I was led off the jetway and placed in a wheelchair in the gate area. Once again, I became anxious, worried they’d forgotten I needed more assistance to get to baggage claim.

Houston’s Hobby Airport also appeared to be understaffed. It took roughly 10 minutes for someone to come assist me to baggage claim. But all the stress of travel was worth it when the skycap said, “I think they see you,” telling me Juan’s mom was waving us over. I practically leapt out of the wheelchair, grabbed my belongings, and got the first hug I’d received from someone outside of my family in seven months.

At Easterseals, we believe in the power of the disability community, the unlimited potential of some 61 million Americans with disabilities. It’s undeniable. And yet, far too many adults with disabilities remain under- or unemployed, with businesses and others in our communities still failing to tap this incredible pool of talent.

After more than a year of navigating life through the pandemic, this fact is now only magnified. As we noted in our recent study about the impact of COVID-19, working-age adults with disabilities report far greater levels of unemployment than in prior years, with more than one million losing their jobs within the first few months of the pandemic. These study findings also show we must act now to change the landscape for people with disabilities to assure greater equity and inclusion for them in the post-pandemic world.

This means advancing equity for all in our communities. To do so, we must increase employment opportunities by helping people with disabilities, older workers, and veterans find and hold meaningful jobs.

Fortunately, the pursuit of a diverse, equitable and inclusive workforce has never been more top of mind than it is now. As a powerful advocate for people with disabilities and their families, Easterseals is working to ensure that disability is included within DE&I conversations happening with employers nationwide. No such conversations or considerations are even remotely complete without including people with disabilities.

As we’re beginning to recover from this past year, our country must now place far greater value on adults with disabilities in the workforce. Yes, it is the right thing to do. And yes, there is an undeniable business case to be made.

A recent study by the American Institutes for Research (AIR) indicates that working-age people with disabilities have approximately $21 billion in discretionary income. This money is waiting on the table, ready for the taking by the brands who get it right.

As consumers, we rarely see disability included in the advertisements, corporate storytelling, or brand messages across our screens or in stores. But for those companies who authentically include disability – in product offerings and design, hiring practices and advertising campaigns – consumers pay attention with their pocketbooks. Companies who embrace disability will be the first to say that these inclusive decisions make for smart business, increasing the bottom line and improving customer loyalty.

Are you curious about this topic? Want to explore it more? I certainly do!

Plan to join Easterseals and Marlee Matlin, Academy-Award Winning actor and disability advocate, alongside PRWeek for an incredible conversation on Tuesday, June 1 – The Marketing Power of Disability. Learn more here.

During this special virtual event, we will drill deeply into how the communications industry – and all the brands it counsels – can more effectively include this extensive population through content and campaigns, but also tap into this incredible pool of talent to bolster corporate DE&I efforts.

AGENDA

·  12:02pm ET-12:30pm ET: Fighting Fears, Suppressing Stigmas

·  12:32pm ET-12:58pm ET: A workplace that works for everyone

·  1pm ET-1:30pm ET: Featured chat with Marlee Matlin

·  1:32pm ET-1:58pm ET: The keys to inclusive content 

FEATURING

·  Marlee Matlin, Academy Award-winning actress and advocate

·  Angela F. Williams, president and CEO, Easterseals

·  More speakers to be announced…

REGISTER NOW

We are excited to have Rachelle Chapman share thoughts about being a mom ahead of Mother’s Day. Rachelle is an Easterseals Ambassador, one of six diverse women helping us stay connected to the disability community and advancing our mission together to provide services and advocacy for people with disabilities and their families. You can follow Rachelle on Instagram to learn more about her and her family. 

By Rachelle Chapman

I didn’t always want kids, but when I fell in love with my husband, something changed. I wanted to make a little human one day with him and have a family. When I was playfully pushed into a pool during my bachelorette party and became paralyzed, the first thing I asked laying on the side of that pool to the EMTs is if I could still have kids.  I remember one answering and saying yes. It was a small comfort even in the midst of a traumatic moment. 

I lost the use of my fingers, triceps, and everything from the chest down. I wondered what I’d be able to do on my own with a little one. We found a surrogate because of the meds I was on and, in 2015, we had a beautiful baby girl named Kaylee Rae. 

I practiced putting on diapers by using my wrist to move the diaper around and my teeth to pull the closures off and put them on. I practiced holding her bottle, and I’d say feeding was by far the easiest task. I was responsible for feeding and holding her in the middle of the night. I couldn’t get up and grab her, but my husband or mom would get her, make a bottle, and bring her to me. That way, everyone could sleep while I stayed awake putting her back to sleep.  

I understand her wants, needs, worries, and fears. My husband is the best dad in the world, but it’s a little stressful for him when she loses it. I am able to step in and let him take a breather. Every night, I read to her and tell stories. We sing our favorite Beatles songs (and a few others) and I rub her back to sleep.  

Are there limitations? Absolutely. But my husband and I had a system in place to delegate different tasks, like opening bottles and changing diapers. As she got older, things got easier. She could reach out to me in her crib to get her out and started to climb onto my lap from the floor. I could finally dress her because she could step into her pants and find the arm holes. She even learned to walk holding onto the back of my wheelchair. 

Also, this pandemic has definitely been a struggle for our family because I am high risk. The beginning was super hard because my daughter, who is an only child, wanted so badly to have someone to play with. All of the playgrounds were closed, and we had to start brainstorming on how to make the quarantine as easy and as fun as possible. We redid our entire backyard to add a swing set, trampoline, and fire pit! If I were to put a positive spin on things, I would say that I really treasured the extra time I had with my family. Kaylee was about to start kindergarten and I dreaded not being able to be with her every day. The quarantine gave us that time to be together and to make some beautiful memories.  

While I’m sad I can’t do certain things for her like teach her how to swim, do her hair or open her new toys with pesky packaging, there is far more I can do for her and she isn’t missing out on anything.  

It upsets me when people say I am selfish for having a child. They do not know what I am and what I’m not capable of. This was not just my decision, but a decision made by my entire family and my entire support system. What if my husband Chris was a single parent? Would it be impossible for him to care for that child by himself or would he be selfish for it? So how does adding me make it a selfish situation?   

I love my daughter more than life itself, and I can’t explain to you the bond we have. She is one lucky girl, and I know she knows it. At age six, she is smart, beautiful, super active and loves going to school. I’m proud to be a mother, and extra proud to have her as a daughter.  

Happy Mother’s Day to all of us with children who have disabilities! We celebrated early — my husband Mike, Seeing Eye dog Luna and I rented a car and traveled two-and-a-half hours from Chicago to visit our son Gus in his Wisconsin group home.

Our son Gus – he’s bigger and stronger now.

Trips like that used to be a routine, monthly occurrence. But you all know what happened in March 2020. Before our early Mother’s Day trip, we hadn’t been inside Gus’ house to visit him in 16 months. It’s been a long year, and we are grateful to the group home for following CDC regulations to keep Gus and his roommates safe. None of them ever tested positive for COVID, and all of them are fully vaccinated now.

Typically, we call the house on the drive up to let them know we’re coming — and to be sure they didn’t have some outing planned. We called as we were driving up, but the house phone was busy. And busy. And busy.

It’s common advice for those of us who have loved ones in the care of others to make unannounced visits…to check on their care. And early on we did that from time to time, but over time, our trust had grown. And Mike and I don’t really like sneaking up on people whom we’ve come to trust. This time we had no choice, though. We just showed up.

Gus’ house is actually a duplex. Four bedrooms, a living room and a kitchen on each side. An inside opening between the units allows staff members to toggle between as necessary. But Saturday, there seemed to only be one staff member there. All the residents were just finishing lunch when we arrived, and the staff member had her hands full. When Mike explained that he’d tried to call, she apologized. Minutes earlier she had realized one of the residents had knocked the landline phone off the hook.

Some might judge this staff member as irresponsible, but we knew better. She was just overworked. The nonprofit Survival Coalition of Wisconsin Disability Organizations conducted a survey of 504 providers of disability services showing that costs are rising and revenues plunging across the industry. Nearly 20% of surveyed businesses and organizations providing such services were unsure whether they would survive the pandemic.

A number of the part-time workers at Gus’ group home attended local colleges. With classes meeting online now, those students have left the area to live at home with their parents. Other staff members have left for safer jobs. A story on Wisconsin Public Radio (WPR) reported that “aides take on demanding duties and are typically paid about $12 an hour in Wisconsin.” And it’s not just Wisconsin. More from that WPR story:

The long-term-care sector has experienced at least 6% of Wisconsin’s coronavirus diagnoses and more than 40% of deaths from COVID-19.

And it’s not just in Wisconsin. I’ve heard that long-term caregivers are in short supply across the country. Caring for people with special needs can be overwhelming. We know that first-hand. Way back—nearly 20 years ago—when Gus had just moved away — we’d take him on outings. Typically to Culver’s, where he’d demolish a double cheeseburger. Then we’d take a ride, roll the windows down and sing along to tunes blasting on the radio.

That was fun, but Mike can no longer muscle our son in and out of his wheelchair and in and out of the car the way he used to. We stick to house visits with Gus now, sitting and talking with him. I update him on what his aunts, uncles and cousins are up to these days —he doesn’t always understand, but it’s enough for him to recognize that it’s his mom talking to him. Then Mike chimes in, calling out a robust “Hi Gus!” in his best booming dad-voice.

Gus always recognizes our voices. Our early Mother’s Day visit was no exception — he smiled and laughed the minute we entered his room. And then he just erupted, about every 10 seconds, with an excited roar of joy. Hearing that, sharing hugs, back together after so many months away…I truly couldn’t ask for a better Mother’s Day this year!