Caregivers Deserve Better

Beth and Seeing Eye Dog Luna posing in a snowy park, Beth in a long red winter coat.Our son Gus was born in 1986 with significant physical and developmental disabilities. He lived at home with us until he was 16 years old. After that, he was cared for at a group home in Watertown, Wisconsin.

Until December of last year, that is. That’s when my husband Mike and I were notified by the organization who ran Gus’ group home that they would be permanently closing their residential operations, at least partly due to the financial burdens COVID had caused.

We thought Gus would be living under their care for the rest of his — and our — lives. The news that the home would be ending its housing services proved to be an anxious daily worry for months to come.

COVID vaccines were not readily available yet in December 2020. COVID protocol did not allow us to visit Gus in-person then, and Mike and I were already pretty stressed out by living through a year of pandemic-related unknowns. Adding this new unknown — where would Gus live now — nearly toppled us.

A case worker was assigned to find a new placement for Gus, and COVID protocols meant we would not be allowed to visit any of the facilities the case worker found. Not in-person, at least. Our only option was to visit them virtually, and Zoom was the only way to meet and talk with the people who might be caring for our son from here on.

When the case worker found another group home with an opening, I was all for it. It was closer to us than the other one, and I feared we wouldn’t find anything better. But Mike wanted to hold out. He hoped against hope that Gus’ original home would find an organization to take over the house he was familiar with — the one he’d lived in for so long. That would be ideal, Mike said. Gus wouldn’t have to move, and current staff could even be retained.

But why would any organization take over the house Gus lived in during COVID times? Even before the pandemic hit, low pay and hard work had already been motivating staff members to leave for higher-paying jobs. One constant throughout all our son’s years in a community setting: direct-care providers caring for him have always, always been underpaid. Over the years we learned to expect high staff turnover.

Low pay causes instability in the lives of the workers and the lives of the people they care for, and the necessity for social distancing and mask-wearing made this past year even more difficult on the workers and the individuals and families who rely on them.

So I was pleased to hear President Biden had proposed something in his infrastructure plan to help the caregiving community: his original proposal included $400 billion in federal spending for Medicaid’s home and community-based services program, a program our son Gus participates in.

That all changed, unfortunately, when the president and a group of bipartisan senators recently reached a compromise to drop this aid.

But back to Gus. Mike argued that if we held out, didn’t place Gus in a new home, and another organization did take over operations of the house Gus was at, Gus would be likely to keep the same caseworkers, staff, and doctors who already know him. Mike had a good point there. Finding doctors and dentists who are willing to treat people like Gus is not always easy.

And then it happened. On April 28, 2021, we received an email from Gus’ original home announcing that they had agreed to sell to another organization.

Mike almost broke down crying while reading the email out loud to me. “I must have been walking around worrying about it all the time,” he said later. “I guess it was weighing on me more than I thought.”

COVID restrictions were loosening up then, and after a year apart, we could finally come visit Gus again, this time with his house under new ownership.

Typically, we call the house on the drive up to let them know we’re coming — and to be sure they’d be there and didn’t have some outing planned. The day we visited, the house phone was busy. And busy. And busy. Without being able to get through on the phone, we showed up unannounced.

Gus’ house is actually a duplex, with 8 residents, four bedrooms, a living room and a kitchen on each side. That way staff members can toggle between as necessary.

When we arrived that day and rang the bell on Gus’ side, there was no answer. I worried they were out on an outing. Maybe we’d missed him.

Mike went to the other side then, and a staff member opened the door. All the residents were just finishing lunch. Two staff members were usually at each side of the duplex, but this time only one staff member was there to take care of both sides. When Mike explained that we’d tried to call, she apologized and said she’d just realized the phone was knocked off the hook. And the doorbell we’d been ringing? It was broken.

Mike and I went to Gus’ room and found him lounging on his couch, well groomed, and happy to see us. We never found out why only one staff member was there, but we could make an educated guess.

Funding home-and community-based care for the most vulnerable Americans shouldn’t be a partisan issue. Lawmakers need to do everything they can to work this aid back into the federal budget. Caregivers and the people they care for deserve it.


Remote Learning and Higher Education from Home: Benefits for Students with Disabilities

Erin at a table reading a bookErin Hawley, Digital Content Producer for Easterseals and the host of Disability Readathonreceived her master’s degree in English from home. Although her story predates the global pandemic, her experience shows the ways that we can make technology and alternative education formats work for students with disabilities, and not against them.

What did you receive your master’s degree in? 

In a fully remote learning program, which was accessible to me, I received my master’s degree in English with a concentration in Multicultural and Transnational Literatures — which is one of my passions! 

What helped you make the decision to pursue your master’s degree from home?  

When I went to school for my bachelor’s degree in 2001, I lived on campus and drove my wheelchair to and from class every day. While I’m glad I had the campus life experience, it was logistically very difficult for me as I had to regularly navigate flooded or snow-covered walkways with my wheelchair and/or had to leave class early to attend to my medical needs. 

Furthermore, I also dealt with professors who refused to accommodate me in labs (I started off as a biology major!), by not allowing my nurse to assist me with certain class activities. It was, at times, very stressful. I found myself taking fewer classes each semester to make it easier on myself, so, I graduated after 5 years with a bachelor’s degree in English. 

After I graduated, I was not finding any stable jobs that aligned with my bachelor’s degree and I thought getting my master’s degree would open more opportunities. However, I knew that campus life was not a possibility for me anymore since I did not have reliable accessible transportation, and I was over the age of 21 years old resulting in me losing most of my home-care nursing hours through my medical insurance. I require 24/7 care if living by myself.  

Therefore, I started looking for online programs to pursue my master’s degree in English. At first, finding the right online program that would lead to an accessible career for me was difficult. That meant, for a long time, I lived on SSI and any freelance writing gigs I could find. I did not have the financial freedom I wanted, and I hated having to ask my folks to help pay for my student loans. 

I do have to say, in this regard, I am very privileged since a lot of families would not be able to offer financial support to relieve the pressure of student loan debt. Additionally, it’s important to note that a lot of people with disabilities may not be able to live with their parents for a myriad of reasons, whereas I was able to.  

Thankfully, in 2012, I found a reputable University that had a fantastic program where I could pursue my master’s degree in English, fully remote. So, again, with the help of my family and more student loans (I’ve just accepted the fact I will be forever in debt) — I enrolled!  

It was all worth it, because after graduating in 2016, that degree helped me land a fantastic job here at Easterseals as a Communications and Digital Content Producer, where I use my writing and researching skills daily. Additionally, my position is accessible to me, as it is fully remote! 

If receiving your master’s degree from home was not an option, would you have pursued higher education in the physical classroom?  

No, I wouldn’t be able to. Due to the nature of my disability, transportation to and from a campus is difficult. Additionally, I would not be able to live on campus either because I require 24/7 care, and my care hours have been cut due to my age and medical insurance limitations. In a nutshell, on-campus learning is not accessible to me. Remote learning is accessible to me and enabled me to pursue higher education.  

In your opinion, how does remote learning/working help the disabled community? 

My experience that led me to remote work and remote learning is common among the disabled community. Remote opportunities are vital for people like me, who cannot drive, who do not have PCAs, nurses, or a slew of other reasons that make in-person learning/work impossible. Remote options open more opportunities for education and employment to people in the disabled community. 

Remote learning/working is accessible to me and made it possible for me to achieve higher education and gainful employment. 

Unfortunately, accessibility, even when it’s officially regulated, is still largely at the discretion of nondisabled people. Even though I received services and supports from the disability department for my undergraduate degree, I still encountered ableist professors, and had difficulties navigating the campus. 

It’s important to note, that just because it’s possible to learn/work remotely, it doesn’t always mean that it’s automatically accessible. Nothing is ever free of ableism. I urge people with disabilities to constantly advocate for their accessibility needs. This is vital. Additionally, institutions and companies, with and without remote options, must constantly evaluate their accessibility. It’s crucial that institutions and companies have open communication so when a person with a disability advocates for their own accessibility needs, they are met with support and understanding, which leads to change, which leads to accessibility, which leads to progress for all people with disabilities.  

In your experience, do you think there is any difference in the quality of education — learning from home versus in the actual classroom?  

I do! I found remote learning more accessible to my needs, and so I feel like the quality was better. I retained more of what I was studying because I didn’t have to worry about all these extra ableist, inaccessible things that weighed so heavily on me during my undergraduate experience. 

I need to mention that people with different disabilities might not have the same positive experiences as I did with remote learning. Everyone learns differently, and everyone has different accessibility needs. However, in my experience, remote learning was beneficial to my accessibility and learning needs. 

How has technology enhanced the remote learning/working experience?  

Advancements in technology have made remote learning and remote working faster and more efficient for me, personally…. and so much has changed! 

When I was working towards my bachelor’s degree in 2001, I didn’t own a cell phone and Zoom didn’t even exist yet. Even when was pursuing my master’s degree in 2016, Zoom wasn’t a thing.  

In my master’s program, everything was done through message boards and email, which was both great for my physical disability and my anxiety. I was able to take my own notes and use PDFs instead of bulky and heavy textbooks. I was able to attend to my medical needs without missing class. 

Now that we have even more advanced technology, I feel like anything is possible, as long as it’s accessible.  

As noted in the Easterseals Study on the Impact of COVID-19 on People with Disabilities, many disabled people may not have access to broadband internet and technologies needed to pursue remote learning or work. It’s important we, as a society, meet those challenges for full diversity, equity, inclusion, and accessibility. At Easterseals, this is something we are committed to. 

Any thoughts on productivity levels while remote learning/working?  

Distractions at home are sometimes a struggle, which can impact productivity. I found that making lists and sticking to them daily was a huge help in my productivity. Now I probably work too hard! Which is its own problem, but I have since set a strict “no working after 6pm, unless absolutely necessary” rule that helps keep me in check. This is an aspect of self-care, which is so important.  

What are your thoughts on the importance of socializing while remote learning/working?  

I’m a complete introverted homebody, so I don’t mind missing out on a full classroom or office. I know that isn’t the case for a lot of people, which is why apps like Zoom are so vital to staying connected. 

What is your advice on how to best prioritizing mental health while remote learning/working?  

Remember to step outside or away from your desk if you need it. Set working/studying hours and stick to them. Both you and your work will be better for it. 

As the world grapples with the global pandemic, remote learning/working has become the norm. In a post-pandemic future, do you think remote learning/working will be here to stay? Why or why not?  

I really hope it does. So many opportunities became available for people looking for work, especially adults with disabilities. I do hope that young kids can start going back to school safely, because I know many are falling behind because they need that social interaction and one-on-one support in the classroom – but a remote option for college, or even high school students, should always be available. 

What are the key takeaways society can gleam from the experience of remote learning/working? 

The pandemic showed that productivity of remote work is still high, in many cases higher, because folks are more comfortable in their own homes. People don’t have to waste time and stress in traffic. Employee mental and physical well-being leads to success. 

What aspects of remote learning were the easiest to adapt to? What were the most challenging? 

Being able to learn at my own pace in a comfortable environment was the easiest to adapt to.  

The most challenging thing to adapt to while remote learning (and working!) is my loud family who doesn’t quite understand, “shh, I’m working/studying!” Somehow their voices always carry through two closed doors. Sometimes, staying focused amidst that can be a challenge. 


Parents of Kids with Disabilities are Asking Schools to Make up for Lost time

Two open books in a libraryA story I heard on NPR’s Morning Edition was heartbreaking for me to listen to. Parent after parent interviewed for the story reported that during the pandemic their children with disabilities went months – and in some cases, more than a year – without receiving the special education services they need to learn. This also supported by a recent Easterseals study about the impact of COVID-19 on people with disabilities. From the responses of those surveyed, almost all children with significant disabilities (93%) have missed milestones due to the pandemic compared to around half (54%) of their non-disabled peers.

Our son grew up with severe cognitive, developmental and physical disabilities. Gus is 35 years old now and lives in a group home, and the skills he does have – he can push himself around using a wheelchair, he vocalizes, and he recognizes our voices when we come to visit him – are all thanks to the dedicated teachers and therapists who worked with him day after day at the public schools he attended over the years. So I could easily believe what family members were saying to NPR reporters: without the usual access to educators, therapists and in-person aides, they’ve seen their children slide backward. From the story:

More than 7 million school children receive special education services nationwide – at least they did before the pandemic. The services covered things like speech, occupational and physical therapy and behavioral counseling. But when schools closed in the spring of 2020, many of these vital services stopped. And more than a year later, in some places, they still haven’t fully restarted.

Parents interviewed for the story said they are demanding help, arguing to judges, state departments of education and even to the U.S. Department of Education that schools are legally required to do better by their students with disabilities. “In complaints filed across the country, families say their children have lost ground, and schools need to act now to make up for the vital services kids missed.”

The story ends with reporters pointing out that schools are insisting they did the best they could, and they’re pledging to families that during the new school year they’ll provide some make-up services in good faith. In the meantime, advocates are pushing back, saying that after 15 months, many children are still waiting for the help they’re legally entitled to. “And in the middle are families, frustrated and confused,” reported NPR’s Cory Turner, concluding that parents of these students are, “certain of nothing but that they want the best for their kids.”

I know exactly what they mean, and I can’t imagine what these past 18 months have been like for them. Well, actually I can imagine. I’m glad they survived it all so far, and I appreciate their willingness to talk about it all on NPR. I hope the policy makers, the boards of education, and people all over the country were listening.


31 Years After the ADA Became Law, It Is Time to Think Differently About Inclusion

historical photo of a protest attended by people with disabilities, people using wheelchairsToday marks the 31st anniversary of the landmark Americans with Disabilities Act of 1990 (ADA). As we honor this historic legislation and the progress we’ve made since, we also find ourselves at a difficult and transitional time in the world. For children and adults with disabilities – who represent some 61 million Americans – there is no doubt they have been disproportionately impacted by the pandemic, especially when it comes to healthcare equity, education, employment, and financial stability. Further, for disabled people of color, these hardships are only compounded.

Even before the pandemic, people with disabilities were already at a societal disadvantage. Historically under-reported and discounted, the disability community has long faced discrimination in:

  • Employment, with many employers not understanding the talent, skills and potential of people with disabilities.
  • Healthcare, with limited access to quality healthcare and a lack of general understanding or training by the medical community to adequately support their unique needs; and,
  • Society, with outdated and hurtful stigmas still rooted in the culture of our neighborhoods, schools and workplaces.

If we are to truly build back and move forward, we must ensure the people most affected by this tragic year receive the most support, with innovative, responsive and quality services and resources. Simply put, now is the time to urgently address these systemic barriers, once and for all.

Our communities are beginning to reopen, with many people starting to recover. For people with disabilities, the barriers to mend are much more complex and more urgent. To get to the core of these challenges, Easterseals commissioned Accenture to conduct a comprehensive national study to better understand COVID-19’s impact on the disability community. The findings are undeniable.

Take education, for example. Almost all children with significant disabilities (93%) have missed milestones due to the pandemic, compared to around half (54%) of their non-disabled peers. The first five years of a child’s life are the most critical time in their development, with these crucial years setting the trajectory of their entire lives.

People with disabilities are three times less likely to be employed, with this gap growing even wider during COVID. Additionally, the digital divide is acutely impacting people with disabilities. They are much less likely to use the Internet, have home access to broadband, or own a computer – the lifeline for all of us through this time.

Bottom line, if our communities do not properly address the inequities people with disabilities face during this emerging post-pandemic, it will have devastating short- and long-term consequences on their quality of life and wellbeing. Not to mention the negative and financial impact on society at large. Now, after 30+ years with the ADA, it’s time to reevaluate our approach to inclusion. Like any form of progress, critical gains don’t happen in one fell swoop – it’s going to take our continued effort, energy, and action to make our modern world more equitable, inclusive and truly accessible. We can no longer afford to look the other way and not recognize this important demographic of our society. We can, should, and must do better.

As a leading nonprofit provider of outcomes-based services, we are launching a comprehensive, nationwide strategic effort to modify, expand, and amplify our services to meet the very pressing and evolving needs of people with disabilities.

We cannot do this alone. We need employers, educators, government officials, community leaders, and local organizations to step up, drive solutions and do more to advance equity for all in our communities. Only when we do this together, will we ensure every single American is valued equally.


It’s the 31st Anniversary of the ADA, and I’m an Accessibility Consultant Now

Today is the anniversary of the Americans with Disabilities Act, and this year I’m celebrating it with the fishes.

Photo of Shedd.

The Shedd.

Chicago’s Shedd Aquarium contacted me last month to let me know about new ticketing kiosks with accessibility features they’d be installing soon. “We are hoping you’d be interested in assisting us in testing out the accessibility functions of our kiosks,” they wrote, explaining the process might require two separate visits. “We might only need an hour to start, and then we would probably bring you back for another session, after we make any of your recommended revisions.”

Of course I said yes.

It only dawned on me this past week that the day we chose to meet – Tuesday, July 27 – is just a day after the 31st anniversary of the Americans with Disabilities Act. In the spirit of that groundbreaking legislation, the Shedd Aquarium never expected me to volunteer my time for this project. They never assumed I am a disabled person sitting around at home with nothing to do. They actually respect my experience and will pay me for my work.

I’ve been to the Shedd many times before – attended the dolphin show with nieces and nephews, spoke on disability-related panels there, attended a wedding there, went multiple times to hear combos perform at “”Jazzing at the Shedd.” Lately I’ve been toying with heading over there sometime to maybe, just maybe, touch a stingray. Saying goodbye to you all now to ponder what a freelance accessibility consultant wears to a gig at a cool place like Chicago’s Shedd Aquarium. Will leave you with this info about the option to touch a stingray there:

How do you think a stingray feels? Soft, like a pillow? Squishy, like a marshmallow? How about scratchy, like sandpaper? There’s only one way to find out — at Shedd’s Stingray Touch experience.

Dip your hand into a shallow tropical pool and discover the unique texture and movement of a school of stingrays as these fascinating fish glide through the water in Shedd’s first outdoor environment. You’ll also learn how we care for all of the stingrays living at Shedd and how your actions can protect them in the wild.

Kudos to the Shedd for making visitors who have disabilities feel so welcome there, and also for their continuing efforts to leave everyone who visits with ways to help the environment. Looking forward to my trip over there Tuesday.


Making the Internet Accessible: Are We There Yet?

Hands typing on laptop keyboard

If ever there was a time to learn about the importance of online accessibility, it was the past year-and-a-half, when so many of us were alone at home protecting ourselves and others from the COVID-19 virus. Those of us with disabilities rely on Assistive technology to perform everyday tasks, and the pandemic put our technology training and skills to the test.

More and more Americans are becoming fully-vaccinated now, things are gradually loosening up, but many of the difficulties people with disabilities experienced with technology in 2020 and 2021 not only persist, but seem to be getting worse.

Take graphics, for example. I am blind and use a speech synthesizer to read email messages, web sites, newsletters, and so on. Many of us who are visually-impaired or blind use screen readers on our computers and smartphones. When we visit a website, as long as you’ve used alt text, our screen readers will read the alt text out loud so we know what images you’ve used. Sites that don’t use alt text correctly (or don’t use it at all) risk leaving us, quite literally, in the dark. During the past couple months I’ve noticed more and more web sites and newsletters foregoing the use of alt text and posting a message like this instead:

“To get missing image description, open the context menu.”

I know how to open the context menu, but then what? What do I search for? I looked it up on Google to learn what to do:

  • Open Google Chrome browser
  • Open the context menu by pressing Shift+F10 in Windows, Ctrl + Alt + Shift + m or VoiceOver+Shift+ m in Mac, Search+m in Chrome OS
  • Use the up or down arrow keys to select “Get Image Descriptions from Google”
  • Use the right or left arrow to open the image description menu.

I’m told this describer can be enabled for a single page or for all pages. But why should I have to leave the web site or newsletter to do this? It’s all more cumbersome for me than good old alt text.

Don’t really care about alt text? Maybe you don’t realize that adding alt text and, when possible, describing images in a way that includes a keyword you’re targeting is a great SEO tactic. In this way, I think of alt text as an example of accessible design. Alt text is beneficial for people with visual impairments, and it also helps everyone trying to increase SEO scores.

And another thing. Here in Chicago, live theater, music venues, movie theaters and other events are opening up now, but just about every time I go to purchase a ticket, some accessibility issue stops me in my tracks. Usually it’s the “spin box.” How do I stop it from spinning so I can choose the number of tickets I need?

A little research on all this led me to the Perkins School for the Blind’s Technology blog. I’ll say goodbye here with a recommendation that you read a post there to learn best practices when writing alt text. Then watch your SEO scores grow!


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!