Happy Father’s Day! A Chat with One of our Favorite Dads

Happy Father’s Day to all the fathers out there! We’d especially like to wish a Happy Father’s Day to Nic Novicki – not only is Nic a brilliant actor/writer/stand-up comic, but he is also the founder/director of the Easterseals Disability Film Challenge and an Easterseals Southern California board member. The Film Challenge, in particular, is a game-changing platform for artists with disabilities that is blowing the doors open for disability inclusion across the entertainment industry.

But wait, there’s more. Nic has taken on a brand-new role as a first-time father! I was excited to be able to sit down with Nic for a chat about all things fatherhood.

Nic, on behalf of the Easterseals family, I would like to congratulate you and your wife, Teale, on the birth of your beautiful baby daughter. How are you going to celebrate your first Father’s Day?

Thank you so much. I’m very excited to be a new dad. My wife and I are so happy. I am going to celebrate my first Father’s Day by enjoying the day hanging out with my wife and daughter. Maybe I’ll watch some basketball or one of my favorite movies. Either way I am going to hang out with my family … including our French Bulldog, Rosie, who is technically our first born!

What was your reaction when you found out that you were going to be a dad?

I was ecstatic! Learning I was going to be a dad was the most exciting news I have ever heard! I have always wanted to be a father. I am a proud uncle of two great nephews, and I have always loved coaching kids’ basketball teams at LPA (Little People of America) conventions. I take pride in being a role model and having fun with kids.

Did your daughter adopt your comedic gene? Do you see a future stand-up comedian in your midst?

Yes, she is definitely a funny child. Not to mention, a night owl, total party animal! Ha! She’s got her mom and me slightly sleep-deprived. Sometimes she’ll be really upset and cry a lot or refuse to take a bottle, and whenever you start to get frustrated — she’ll give us a side-eye, with a laugh or a smile. She already knows what she’s doing, with that great sense of comedic timing!

Any hilarious comedy gold moments about being a new dad that might make it into a standup routine?

Yes! The first night of Memorial Day weekend she spit up so much that it oozed all the way down my back, going right into my underwear two separate times in just an hour. Let’s just say, it was definitely an interesting start to a holiday weekend! I earned my new dad stripes with that encounter.

How would you like to see fathers with disabilities represented in the media? Do you think there is a lack of representation there?

I would like to see more dads with disabilities in roles where the disability is never directly addressed. It’s a dad who just so happens to have a disability. I would like to see storylines with dads with disabilities on the soccer field or doing late night runs to the grocery store. That disability representation is important. Because guess, what? We are out there! There will be more progress with disability inclusion in the world when we see it authentically represented in media.

What do you think the world should know about parents with disabilities?

We are just like every other parent. There is not really much of a difference. We are going through the same things most new parents are going through in terms of sleep schedule, feeding, learning how to care for our baby, etc. The only difference is we just may need to do some things in a different way.

Did you ever have any worries / concerns about parenting while having a disability?

No. I did not have any concerns about being a parent with a disability. I have multiple friends who are parents with disabilities and they served as great role models for me. People with disabilities are natural problem solvers, it’s how we naturally go about our days. I am a little person and I have been involved with the Little People of America (LPA) my whole life, so I have grown up seeing people with disabilities as parent role models. LPA has been a great support system for me, so has my involvement with Easterseals and the Film Challenge.

What would you say to someone with a disability who is thinking about becoming a parent?

Just do it! I know a lot of people say, “It’s never the right time [to have a baby|,” but it will work out. Trust yourself and just go for it. I feel like that was the case for us. We have figured out ways to make everything work. My wife is also a little person, so we buy things that are lower and smaller to the ground and find ways to let gravity help us.

Do you know other parents with disabilities? If so, did they give you any great parenting advice that you could share with us?

Yes! We are lucky that we have a lot of friends from the Little People and disability community who have kids, so we were able to get a lot of great adaptive parenting tips in terms of the best and easiest ways for us to hold the baby, and the lightest kinds of strollers.

Sofiya Cheyenne, who is an Easterseals Disability Film Challenge participant, and a great friend of ours, had a baby less than a year ago. Sofiya gave us some great tips of what she bought and how it helped her, like what bassinet worked best, in terms of their ease of use and overall safety.

In your experience, what are the best resources out there for new parents who also happen to have disabilities?

There are so many great blogs out there, but I think the best resource for new parents who have disabilities is word-of-mouth. There are a lot of cool parents with disabilities out there and we were able to connect through social media. We’ve seen such a warm welcome in the online space, with an abundance of people that want to give us tips and advice. Sometimes almost too much, haha!

What is the best adaptive baby equipment that you recommend?

For us, the best baby equipment is the lightest baby equipment. A lot of things for babies can be pretty heavy and that is difficult for me, so we always try to find the lightest products. Also, we try to find products that fit short arms so that we don’t have to lean fully into the crib or bassinet.

Best parenting hack?

I’m still researching that, haha! Check back in a couple months.

What is the FIRST thing you learned as a new dad?

This goes without saying — my child is the most important thing in the world. No matter what. You’re a dad 24/7 and I love every second of it.

What is something you wish someone would have told you about parenthood?

I don’t know. I mean, there are only so many things you can tell someone, but it really comes down to learning firsthand. You have to learn and make all the new adjustments through your firsthand experience. It’s a new adventure.

What is the best advice you’d give to a new dad?

Get ready to have fun, be on call and be as supportive and loving as you can be! Also, get ready to have an amazing experience with somebody that depends on you and loves you. Fatherhood is a beautiful thing. I feel so lucky to be her dad.

 

Challenging Misconceptions as a Father with a Disability

Dominick, a man using a wheelchair and wearing a pair of glasses smiles against a backdrop of an LGBTQ/Trans flagDominick Evans, also known as Dom, is an incredible father – but as a disabled person who parents a disabled child, much of society doesn’t view him that way. Dom has Spinal Muscular Atrophy and is hard of hearing, while his son is autistic with other psychosocial disabilities. When Dom met his partner Ashtyn on an online forum 22 years ago, she was a single mother of an 8-year-old son and Dom was in college studying theater and acting. They lived five hours apart, with Ashtyn in Michigan and Dom in Ohio. After speaking every day for a few months and starting an online relationship, the couple finally met in person and have been inseparable ever since. Now, their son is 26 and the family is thriving. Sure, there are still challenges along the way – including people’s misconceptions about their relationship and parenting – but Ashtyn and Dom continue to provide the support their son needs as he goes through life.

“I love kids. I’ve always wanted children,” he said. “I knew that I could try to help [our son] navigate the world as a disabled person myself. I’ve never been able to formally adopt him, but he wanted me to be considered his dad and we’ve always had that kind of relationship. Sometimes he calls me dad, and sometimes he calls me Dom, but he definitely is my kid.”

Dom is the parent who provides emotional support, as well as guiding his son through education and teaching him social skills. Dom and Ashtyn’s co-parenting skills are what keep the family working. While it is difficult for Dom   to be unable to hold his son when he is upset or hurt, the emotional connection the two have more than makes up for it. They also love spending time together playing video games, and bond over that shared hobby. Dom said, “I remember the look on my son’s face when I helped him win Super Mario Sunshine. In that instant, I became his hero! That’s the thing parents aspire for… moments like this.”

Dom also knows it is important to have someone in your life who understands your own experiences. “I feel like, because I’m disabled, I gave my son a much different perspective,” he said. “He really got to witness the way I was mistreated, and I think he’s a better person because he’s more compassionate and caring. He was bullied a lot in school, and I was able to connect with him because I was also bullied. Having someone who really understands what you’re going through is important for disabled kids. I was glad that I got to be that for my son.” He also said that, in addition to his disability, his son gets to see Dom’s advocacy for LGBTQIA+ rights, and this makes him more empathetic and understanding of diversity and inclusion.

When teaching him life lessons, Dom says that he wants his son to know that it’s okay to fail – you have to just keep trying. He wants him to know that he will always have a shoulder to lean on and listen to without judgement. When the world tries to tell them that their very existence is wrong, they can lean on each other and their found family for strength and pride.

“All we have is each other and we are a very strong family unit. I wouldn’t change my family for the world!”

 

About Ableism: Lessons Learned from a Teen Advocate

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

I’m pretty sure ableism wasn’t even a word when I lost my sight in 1986. Don’t get me wrong here: ableism existed 35 years ago, but back then we just called it discrimination. As we approach the 31st anniversary of the Americans with Disabilities Act, now is a good time to acknowledge the discrimination that existed before the ADA and how it still exists today. So what does “ableism” mean, exactly?

This past year and a half, young people have taught me a lot about social justice, equity, and inclusion through their participation in marches, their Zoom talks, webinars, YouTube videos, and speeches. When it comes time for me to learn more about ableism, I am fortunate to have a young expert to go to: my 15-year-old friend Anja Herrman. I came to know Anja very well when she was nine years old and learning at home during a casting program (casts on both legs from her hips down to her ankles). She was schooled at home for two months back then, and I was her at-home writing tutor. Many of her completed assignments were published as guest posts here on our Easterseals National blog, and you can read this post from 2016 to learn how and why she had all her posts back then published under the pen name DJ Mermaid. A high school student, published writer and disability activist now, Dj Mermaid goes by her real name.

Anja K. Herrman was the winner of the Primary Division Playwright Discovery Program at the Kennedy Center in 2019, and a keynote speaker at the #EachforEqual International Women’s Day Event in 2020. Her work has been featured in Magnets and Ladders and Input Magazine and is also forthcoming in the Disabled Writers blog and the Huffington Post.

Anja uses a power wheelchair to navigate her public school, and the stories she recounts in An Essay published in Rooted in Rights last month pretty much spell out what ableism is all about. Two examples:

  1. She had to advocate on her own for automatic door buttons to be able to access the restrooms at her public school independently.
  2. When the school elevator broke down, the school administrator in charge simply shrugged and said there was “nothing he could do.”

The broken elevator was particularly problematic, since many of Anja’s classes occurred on the second floor. The ableism comes out loud and clear with the administrator’s answer to the problem at hand. Direct from Anja’s writing:

The school’s genius (I’m being sarcastic here) solution while they were waiting for it to be fixed was to have me sit in an empty classroom without my peers during instruction time doing independent learning (also known as busy work).

Anja had to explain to the principal why this wasn’t suitable. “I wouldn’t be with my peers,” she writes in her essay. “And I was not getting educated to the fullest extent of the school’s duties.” The principal attempted to placate her, she says. “But basically he told me there was nothing he could do.”

So there’s the ableism: dismissing Anja’s needs, deciding that keeping the other students upstairs with their teacher took precedent over her educational needs. You’ll have to read her Rooted in Rights essay to find out what Anja did to advocate for herself here, but I’ll tell you this much: a week later, Anja’s classes were moved downstairs so she could participate.

Anja addresses the idea of allyship in her essay as well, acknowledging that being an ally to the disability community is “a complex dance of knowing when to speak up and when to keep quiet so disabled people can share their experiences.” In the essay she recounts a conversation with her high school theater director about making her costume accessible — tiny buttons don’t work for her. Everything was going along just fine until the director referred to Anja as differently-abled. “I started to do my whole spiel about how using that euphemism is offensive,” She writes. “It erases my identity as a disabled person…it forces me to conform to the ableist view that ‘disability’ is bad and we should avoid naming it at all costs.” Her director’s response was a pleasant surprise for Anja. “I get it, “ he told her. “Your identity is yours to name, and I’ll refer to you the way you choose.”

“It may not seem like much,” Anja writes, “but that was an example of allyship to a student in the disability community…my director listened to my concern and then chose to respect me, an expert on my own disabled body and identity, instead of doubling-down on his comment.” I’ve learned a lot about ableism and allyship from my young talented writer friend Anja, and encourage you to read her Rooted in Rights essay in its entirety, I’ll leave you with one last wonderful excerpt:

Teachers, take note: being an ally doesn’t always have to be some grand gesture; something as simple as listening and changing your stance on an issue could be just as meaningful. But anyone can become an ally — even you! — by taking the time to listen.

 

Inclusion Begins with the Youth: On Educating Kids about Disability

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!

 

Flying with a Disability: Are the Airports Ready for Us?

Alicia’s back from her trip to reunite witA young man, Juan, has his arm around a young woman, Alicia, at a restaurant h 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.

 

Academy-Award Winning Actor Marlee Matlin & Easterseals to Headline The Marketing Power of Disability Conference Presented by PRWeek

Angela F. Williams - CEO EastersealsAt 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

 

Many Said I Was Selfish For Having a Baby. This is Why They’re Wrong

rachelle and her daughterWe 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 bottleand 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?   

love my daughter more than life itself, and I can’t explain to you the bond we have. She is one lucky girland 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.  

 

 

This Year’s Best Gift for Moms of Kids with Disabilities

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!

 

Justice Department Will Intervene in Disability Discrimination Suit About Pedestrian Safety

I just got word that the U.S. Department of Justice has moved to intervene in a disability discrimination lawsuit brought by private plaintiffs alleging the City of Chicago violates the Americans with Disabilities Act (ADA) and Section 504 of the Rehabilitation Act of 1973 by failing to provide accessible street-crossing signal information for pedestrians with disabilities.

Chicago currently provides visual crossing signals — “walk/don’t walk” signs and countdown timers — for sighted pedestrians at nearly 2,700 intersections. It has only installed Accessible Pedestrian Signals (APS) at a mere 15 city intersections.

Sighted pedestrians use flashing “Walk/Don’t Walk” signs and countdown timers to alert them when it is safe to cross the street. I can’t see those helpful devices. Devices providing pedestrians with safe-crossing information through audible tones, speech messages, and vibrotactile surfaces do exist, but too few of the busy intersections in Chicago offer them. The proposed suit alleges that the lack of accessible pedestrian signals at over 99 percent of Chicago’s signalized intersections subjects people who are blind, have low vision, or are deaf-blind to added risks and burdens not faced by sighted pedestrians, including fear of injury or death.

I’ve come across accessible pedestrian signals in other cities we’ve visited — Madison, Wisconsin comes to mind, and Urbana, Illinois has a few — but those were inconsistent. At some intersections, hearing “beep, beep, beep” meant I should cross, and at others it meant I should stay put. Looking for the button to press to activate the accessible pedestrian signals got me off-track and made it hard to find the crosswalk again. Sometimes the beep, beep beep noise was so loud it made it difficult to hear and judge the traffic surge. I pitied the poor people who lived and worked near one of the APS and had to hear it all the time.

When I was newly blind and learning to use a white cane, orientation and mobility (O&M) instructors taught me to rely on the surge of traffic at my parallel to recognize when the signal is green and it’s safe to walk. That principle is reinforced every time I travel to Morristown, New Jersey to train with a new Seeing Eye dog. In fact, at the Seeing Eye, one isn’t eligible to be matched with a dog without having completed O&M training.

Dogs are color blind. Seeing Eye dogs can’t read the stoplights, so it’s not their job to determine when it’s safe to cross a busy street. They are trained to go right up to every curb at each street crossing they get to, stop right there, and trust their human partner to use their sense of hearing to figure out what direction traffic is moving. Once we’re certain that traffic is flowing the same direction we want to travel, we give our dogs the command to cross. Dogs are trained to keep an eye out and to disobey their partner if the team is in harm’s way. It’s called intelligent disobedience, and it’s a pretty difficult thing to ask the dogs to do, when you think about it.

Traffic in Chicago has changed immensely in the year my new Seeing Eye dog Luna has been with me — things started out normal in February, 2020. Then came the COVID shutdowns in March. Cars were few and far between, making it difficult to rely on my sense of sound to judge traffic flow. “Is the light green?” With so few people out and about, there was no one to ask.

Traffic increased again when things opened up in the summer, then decreased again when a surge in COVID forced another shutdown in fall. I’ve made my share of bad decisions at intersections during these times, and I cringe to think that onlookers are blaming my young new dog Luna when it’s me who made the mistake.

So I’m no longer skeptical when it comes to accessible pedestrian signals. Do I need one at every corner? No. Be selective and put them at particularly difficult intersections — the T-intersection down the street comes to mind. I need all the help I can get at that one. You know what else would help? Making the already-existing countdown timers audible. In these times of talking computers, VoiceOver on smartphones, and speech synthesizers, it seems a simple call-out of “ten, nine, eight…” and so on wouldn’t be that difficult. And what a great help it would be to me and my fellow visually-impaired pedestrians.

 

Have Vaccine, Will Travel: Flying Blind During COVID

A sun hat, tropical leaf, a miniature bus and airplane, and a passport book arranged in an organized fashion with colorful accents

My boyfriend Juan lives in Houston. I live in the suburbs of Chicago. He came to visit me last fall, and the last day we were together was September 26, 2020.

That was nearly seven months ago.

A few weeks ago, I finally booked tickets to fly out there this month for a much-needed and highly-anticipated reunion. I’m not going to lie to you: the long wait hasn’t been easy. With a feeling of uncertainty constantly looming over both of us, some days really took their toll.

When we parted ways in September, we were reasonably certain I’d be able to make it out there for my birthday and Thanksgiving. I didn’t. We also missed New Year’s, his birthday and our first Valentine’s Day together.

Phone calls, text messages, and Zoom meetings galore kept us busy and connected. It was tough, but in the grand scheme of things, it’s been worth it.

I am not the type of person to make travel plans and wing it. I like to do a lot of research beforehand. Before I took my first solo flight last year, I did a lot of research on airlines and accommodations, and asked blind and visually-impaired friends what their advice was. I posted my questions on Facebook and I did a lot of my own research on airlines and accommodations.

When planning my upcoming trip, I didn’t post any questions on social media. Instead, I talked again to blind and visually-impaired friends, and this time I also talked with former teachers who are very familiar with blind travel or have traveled themselves. Some of the questions I asked:

  • What was assistance like at the airports?
  • Was the level of assistance any different than before COVID?
  • Should I plan to arrive extra early, even earlier than I normally would?
  • Does the airline need advanced notice of my need for accommodations?

While I don’t expect things to be super different, I do expect some changes, so I logged onto the Southwest Airlines website to read about their COVID-19 travel updates. It doesn’t look like traveling is any different in terms of accommodations. Boarding might be a longer process, but typically I go for pre-boarding anyway. There are markings on the floors to indicate a 6-feet distance, but I trust that my assistant will make sure I am distanced from other people.

So, after extensive, careful research and my family and me getting fully vaccinated, it felt like the right time to travel to Houston.

Juan and I have discussed the Texas governor’s recent decision to lift all mask mandates there, and he assured me he always wears his mask. I asked him if restaurants still require masks and, if so, how he knows that (since, like me, he is totally blind and wouldn’t be able to read the signs). “I’m usually with two of my friends who can see, and they’ve told me there are signs,” he explained, assuring me that the businesses he goes to are still really good about requiring masks.

So with that extra reassurance, I finally booked my flight! I’ll be spending two weeks in Houston, somewhere I haven’t been since early 2020. I’m excited to see some of my friends that I met last year, and welcome that sense of freedom that always sticks with me after traveling somewhere on my own.

Look for another post about travel from Ali when she returns from Houston in May and can report in on their adventures together there.