The ADA Generation Speaks: Let’s Make ADA Education Part of the Core Curriculum

by Beth Finke

I am pleased to introduce Raven Wilson as a guest blogger today. Raven is a 24-year-old graduate student at Northern Illinois University studying Vision rehab and assistive technology. A self-proclaimed nerd, she likes everything from Harry Potter books to Marvel movies — and lucky for us, she enjoys creative writing, too! Here she is with a thought-provoking reflection on the 30-year anniversary of the Americans with Disabilities Act.

by Raven Wilson

One morning in 2016, my friend group decided to try a delicious-sounding breakfast buffet. When we arrived at the entrance we were greeted with “I’m sorry, animals aren’t allowed in the restaurant area,” by the hostess. Her tone was friendly with an edge of boredom. Our group was blind at various levels and I was the only one with a guide dog.

”She’s a service animal,” I explained, trying to shrug off my nervousness. I tilted the handle of my dog’s working harness up slightly so the hostess could see it. She was unimpressed. “We can’t allow animals where people eat. It’s not healthy.”

So, it was going to be one of those situations.

My best friend had witnessed this before and jumped to my defense. “She’s a working dog and by law you have to let her into the restaurant.”

“I’ve never heard of a law like that. It’s hotel policy to not allow animals of any kind in the restaurant, but I can go get my manager to see what can be done,” the hostess said. Her demeanor had noticeably soured. We all waited as she disappeared into the restaurant and came back with the manager.

He told us the same thing as the hostess, and when our friend group explained that refusing a service animal that was not unclean or disruptive was against the ADA, the manager didn’t know what we were talking about. He ended up grudgingly letting me and my guide dog in.

By that point, I had been a guide dog handler for two years and had been in my fair share of refusal situations. Each one had one thing in common: those refusing me had little to no idea what the ADA was.

The Americans with Disabilities Act (ADA), is a law that mandates public facilities and institutions, as well as employers, provide reasonable accommodations for the disabled. It puts protections in place that work to erase discriminatory and exclusionary practices. While the enactment of the law and the subsequent amendments in 2008 have brought us leaps and bounds in terms of rights and opportunities, it’s not enough.

There is a serious lack of knowledge of the ADA. Either people misunderstand it (purposefully or otherwise) or they have only heard about it in passing if at all. Students study about the constitution and the bill of rights, the emancipation proclamation and Civil rights act (sometimes), but not the ADA. Employees get little to no training on the ADA, and employers seem to only know enough to avoid expensive sanctions. Those who do know about the ADA and are acting in good faith appear lost when it comes to implementing it in real-world situations.

What’s even more troubling is how many disabled people know little to nothing about the ADA. Until I became a guide dog handler, I hadn’t heard much about it. None of my vision teachers had sat me down to discuss the laws that affect me. My first encounter with the ADA was during my first refusal as a handler. I was terrified. I didn’t know enough about my rights to defend myself, so I ended up leaving. Others are in the same boat, and having to leave a public place you deserve access to is one of many consequences of disabled people not knowing their rights and how to fight for them.

Reflecting on the 30-year anniversary of the ADA, I know we have a lot of work to do. The first step is more exposure and education. I imagine course units and even entire classes about Disability history. I imagine competencies in both the ADA and IDEA (Individuals with Disabilities Education Act) being included as an expanded core curriculum standard for disabled students. I imagine a standardized ADA certification program for employers and employees in every sector that explores the ADA through a reflective, layered lens and offers up tools for implementing accommodations and non-discriminatory practices in real-world situations.

I long for a future where I can mention the ADA, and everyone knows what I’m talking about. I long for a future where, if I’m being denied my rights, passersby will come to my defense with full knowledge of the ADA. And most of all, I long for a future where disabled people and their allies don’t have to invoke the name of the ADA — because disabled people having rights to equal access and accommodations will be treated as irrefutable fact.

The ADA Generation Speaks: We Need More than the Minimum

by Beth Finke

I am pleased to have 13-year-old guest blogger Anja Herrman back with us today. I got 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 disability activist, Dj Mermaid will be starting high school this fall and goes by her real name now.

The Americans With Disabilities Act: A Celebration of How Far We’ve Come, and How Much Further We Have to Go

by Anja Herrman

Hello everybody. I was thrilled when Beth asked me to write a post for Easterseals about the ADA’s thirtieth anniversary. The passage of the ADA in 1990 is something I feel very passionate about, so I am excited to share my thoughts. Without further ado…the post:

Let me first start by saying that I do not know a pre-ADA America. I was born in 2006, so while I myself did not experience the Capitol Crawl or other such historical events, I am proud to say I am part of the generation of disability activists who are attempting to build on those victories to advance civil rights.

Additionally, I know how lucky I am that I didn’t have to grow up in a world where I ever had to question whether the law provided me civil rights. That said, the ADA hasn’t removed all challenges people with disabilities (PWD) face when it comes to being equals in the world. It’s my job to reveal some challenges PWD of my generation face and what the ADA needs to have added into it to change and adapt with the times.

First, the ADA needs to include push buttons on bathroom doors. I mean, it is 2020, how is this not added in yet!

Secondly, I would like to see more intersectionality regarding different types of disabilities like sensory and intellectual disabilities by requiring businesses to have a sensory safe environment, and having information presented in different cognitive levels, so everyone can understand the material.

Thirdly, and this is a big one, I believe the ADA needs to add in a clause about hiring people with disabilities in public businesses and and seeing to it that they are paid over minimum wage. People with disabilities need to be able to have a safe and accessible workplace.

My life has been impacted with the passage of the ADA, however, the ADA has certainly fallen short for me personally. I see my disability as a part of me, and some environments need to adapt to fit me. This means that I am constantly forced to take what has been written and argue that my demands fit the ADA. PWD are still a minority in this country and I feel as though the ADA needs to be updated every three to five years. Why? Because when the perceptions of the people with disabilities and those of the public change, so should the laws.

As we remember the 30th anniversary of the Americans with Disabilities Act, let’s look back on our triumphs and make ideas on how to push forward to support the ADA Generation: the new generation of civil rights.

Stories from the ADA Generation: Celebrating 30 Years

by Beth Finke

Moderating the Easterseals National blog has taught me that the most powerful way to communicate about disability issues is to share the voices and stories of the experts: real people with disabilities.

The Americans with Disabilities Act turns 30 at the end of this month, and with that in mind, I’ve been listening to the voices and stories of people with disabilities thanks to the audio version of a 2019 book called “From the Periphery: Real-Life Stories of Disability.” Author Pia Justesen spent four years talking with — and transcribing the accounts of — dozens of people who have disabilities, referring to those she talked with as “oral historians.”

Each chapter features an oral historian and Justesen starts with an unapologetic and respectful description of the person — along with an explanation of where the conversation took place and a short bit of background. Readers like us get to hear powerful, honest and compelling first-person accounts of what everyday life can be like when society treats you differently.

Justesen must have spent hundreds of hours talking with (and, especially, listening to) those oral historians — and she certainly gained their trust. The oral histories in this book are heartfelt, intelligent, and, well…real. My only problem with the book? Too many of the featured oral historians were, like me, over age 30. I would have liked to hear more from younger people with disabilities.

In the books foreword, retired Senator Tom Harkin, the Senate Author of the Americans with Disabilities Act in 1990, refers to people with disabilities born after the passage of the ADA as the “ADA Generation,” crediting them for understanding that the way they are treated now has more to do with their surroundings than with their individual impairments. From the foreword:

These are the young people who have been raised since the passage of the ADA, which banned discrimination on the basis of disability, began to change the physical structures, and empowered individuals with disabilities to assert their rights in court.

”Members of the ADA generation are not going to just sit back and accept anything less than full inclusion,” Harkin writes, pointing out that unlike so many of us living with disabilities before 1990, the up and coming ADA Generation understands that they are capable. They know the attitudinal, structural, and physical barriers in society (the ones many of us over age 30 figured we just had to live with) are unfair.

This got me to thinking… I moderate the Easterseals blog. If I want to hear from people who became disabled or were born with disabilities after the ADA was passed, why not ask people to write guest posts about their experiences with disability rights and discrimination? I could ask them how we should look at the ADA now, 30 years later. Maybe they’d have suggestions for changes to the ADA for the next generation – especially given the current climate of people talking about social justice and equality.

So I asked them. And guess what? They responded! Watch for their guest posts here starting this week and continuing right up to the 30th anniversary on July 26, 2020. Get ready for action!

Add Your Story to an Anthology about COVID-19: Deadline Approaching!

by Beth Finke

You can be a part of a project that aims to give back to organizations that are instrumental in advancing mental health initiatives during this time.

Back in January, I wrote a post about meeting Katherine Schneider while we both were at the Seeing Eye training with new guide dogs. a retired clinical psychologist, Katherine supports the Schneider Family Book Award, the annual award administered by the American Library Association to honor the children’s book that best captures the disability experience for children and adolescents.

Katherine contacted me recently to let me know she is looking for essays for submissions to Blooming In the Shadow of COVID-19, an anthology of stories about resilience and growth during the pandemic. From a press release:

As we share our experiences during the pandemic, we also advocate for one another and connect with one another. As assumptions drop, people allow themselves to be known and to know. So, it is our hope this is the Bloom in the pandemic.

While Project Bloom can’t accept all essays, Katherine assures me they “very much want to read yours” and are open to all views and expressions related to your experience of COVID-19. “We’re looking for authentic expressions and stories, not perfection,” she says.

All submissions are due by July 15, 2020, and there is no cost to participate in this collaborative anthology. All funds generated from sales of the book will be donated to an agency or agencies supporting multicultural mental health initiatives. Personal essays should be written in the first-person, and the storyline should represent the author’s personal, lived experience during the pandemic. Poetry and artistic submissions will be considered as well.

In general, essays should be at least 800 words and less than 2000 words. The essay, a short biography (250 words), and a photo of the author needs to be emailed to Lisa@BeingAsil.com by 5 p.m. central time on Wednesday, July 15, 2020.

Service Dogs in the Pandemic, Part Two: Fear Not, Dogs Do Not Spread COVID19

by Beth Finke

I live in Chicago, one of the cities where businesses and other public places are starting to re-open.

I also use a service dog.

The re-opening of public places comes with many new regulations and rules about wearing masks, staying six feet apart, temperature testing and occupancy guidelines. One thing those of us with disabilities need to remember is that with all the changes resulting from the coronavirus, one thing that stays the same is this: The law still gives us the right to have equal access to public places, transportation, and air travel.

And people with disabilities who use service dogs? We have equal access to public places, transportation, and air travel with our service dogs, too.

My Seeing Eye dog Luna has been guiding me to more places lately as Illinois has entered Phase Three of re-opening. During these walks I’ve come across people who are absolutely sure that dogs spread COVID-19. They are wrong. Here is some information from the CDC about COVID-19 and animals:

The virus that causes COVID-19 spreads mainly from person to person through respiratory droplets from coughing, sneezing, and talking. Recent studies show that people who are infected but do not have symptoms likely also play a role in the spread of COVID-19. At this time, there is no evidence that animals play a significant role in spreading the virus that causes COVID-19.

Studies do show that the virus can survive for a period of time on surfaces, including a dog’s fur. but there is no evidence that dogs can transmit the virus to humans. And besides, people shouldn’t be touching our service dogs without our permission anyway.

One might argue that Luna and I benefit when the person with this misinformation is out on the sidewalk or in an intersection we’re crossing: that misinformed person gets wayyyyyyy out of our way and therefore does not distract us from our progress. But that benefit is far outweighed by the idea that this fear of COVID-19 transmission could leave store owners, government officials, and airline executives with an excuse to try and deny us access.

But guess what? Fear is not an excuse for denying access to a qualified service animal under the laws that protect us.

But speaking of fear, I’m still a little reluctant to be away from home in close quarters. As much as I could use a haircut, for now I’ll stick with my French braid. Social distancing can be difficult to judge when you can’t see, so my own comfort level (or circumstances about the pandemic beyond my control) might prevent me from going to some other places that have recently opened up as well. But whenever possible, for all of us with disabilities who use service dogs, that choice should be ours. We may have to work a little harder to educate people and advocate for ourselves during these challenging times, but our independence and dignity are worth protecting.

Celebrated Disability Rights Activists Discuss ‘What’s Next in Disability Activism?’ Inspired by Judy Heumann’s Memoir, “Being Heumann.”

by Yolanda Green

Easterseals hosted its first Disability Revolution Book Club, a virtual discussion with a powerhouse panel of female disability activists.  It was a lively, motivational and relevant conversation on civil rights, disability inclusion and representation, all amid the backdrop of the Black Lives Matter movement.

Hundreds participated.  The 90-minute live conversation centered around Judy Heumman’s new must-read memoir “Being Heumann: An Unrepentant Memoir of a Disability Rights Activist.” The panelists included pioneering disabilities rights activist Judy Heumann, along with her co-author Kristen Joiner, Tony award-winning actress Ali Stroker, and award-winning actress and influencer Lolo Spencer. Disability advocate and journalist Emily Ladau was the moderator. Throughout the event, they took questions from the live audience and discussed the fight for equal rights, the importance and impact of representation, and what comes next in the conversation surrounding disability rights.

If you missed this motivational gathering, you can still tune in and watch it.

Need further reason to check in out? Here’s a few highlights from this compelling conversation:

“I had a disability growing up as a kid, and I never had heard someone else’s story and felt, “that was my story too.”  And in reading and speaking Judy’s story, it did something to my own.  It allowed me to wrap my arms around my own experience and to process it through Judy, through her words, through her experiences.  It shook me to the core.”        – Ali Stroker

“I think people get caught up in thinking, when they tell their story, they have to have a million people as their audience first before they can start telling it…that is not the case.  You can start telling your story just around your immediate circle of people, in your classrooms, at the office. You can advocate by literally being at the store and being like, ‘hey, that dressing room is designated for me.  This isn’t right.’”  – Lolo Spencer

“We need more stories about people with disabilities where their stories are told as human stories that we can all relate to. Representation is a huge issue. If 1 in 4 people has a disability, how are they invisible in any situation ever? So we need to be asking those questions about why… we need to be using our influence with people without disabilities to make sure that everybody has a seat at the table and they’re no longer invisible.” – Kristen Joiner

“We need to be educating the general public, but we also need to be educating ourselves.  Because we have grown up in worlds where we’re not really significantly exposed to people who have various forms of disabilities and come from different backgrounds.  We need to really understand why institutions have been developed, and what is the oppression around disabled people who are dependent on other people in many ways.”  – Judy Heumann

Easterseals greatly appreciates the point of view each speaker brought to the party. Thank you so much for using your voices to advance this critically important discussion. Please encourage your friends and family to read Being Heumann. Our aim is for more people in our communities to reflect upon, learn from and be proud of our shared disability history. And, most important, to come together and take action to work towards greater equality for all of us, regardless of our differences and abilities.

“When. Will. This. End?” – The Impact of COVID-19 on Parenting

by Angela F. Williams

Three months ago, we were all thrust into an unprecedented situation. Some of us had to close businesses. Some of us had to step in to take care of a loved one. Others had to figure out where their next paycheck would come from – and fast. The COVID-19 outbreak has been difficult for all of us, but while some of us are coping by talking with family and friends over Zoom or diving into hobbies, it can be difficult for children to understand the problem – and in turn, equally difficult for them to find coping mechanisms.

This is an issue I have heard repeatedly when I talk to parents who participate in Easterseals programs. And while all children might be coping with this challenging time in their own ways, it can be especially difficult for children with disabilities and children with autism. Routine and consistent scheduling are especially important for them. COVID-19, through no fault of the parents or those who are trying to help, completely uprooted the sense of security that routine can bring to someone with autism.

Easterseals therapists and service providers are doing all they can to ensure as much of the critical routines of children on the autism spectrum remain intact through technology and telehealth. And that is just it – everyone is doing what they can in this situation, and all of us should be proud about of that.  It is so hard to see that you are making it through when you are in the weeds.  You find yourself asking:

WHEN. WILL. THIS. END?

That is exactly how one of our program participants, Banner, expressed his frustrations. Banner, age 10, has seen his Easterseals therapist through Zoom sessions ever since social distancing became the norm. Still, the shock of having to change routine hit him and his family hard, and he is not alone. Buzzfeed recently profiled many American families, including Banner’s, to give a more detailed picture of the ways COVID-19 has impacted children.

I think many of us share Banner’s feelings. Just when will it end?

We may not know the answer to that question. But I cannot help but be proud of how the Easterseals community – parents, caregivers, teachers and therapists – has shown strength and resilience through this time. We all are taking on new responsibilities, while already juggling full plates!  But we must not forget to give ourselves credit when credit is due. You – the parent who is wondering if you are doing this ‘right’ or is questioning if your child will be okay at the end of this – are doing the best you can. That is enough. And although you may have doubts now, you will make it through. Just like a child progressing through their goals, we are all taking things day by day – step by step. We are learning together.

And we will make it through to the other side – together. I know we will.

Service Dogs in the Pandemic – Part One

by Beth Finke

It’s been months since I’ve been able to share stories with you here on the Easterseals blog about the questions little kids ask about working with Luna, my Seeing Eye dog. School closures this year means our presentations to students were cancelled, too. I miss them!

Big kids to the rescue! The memoir-writing classes I lead for older adults have been meeting via Zoom, and here’s a sampling of questions writers in those classes have been asking me lately, along with some answers:

• • Did Luna notice that Mike was starting to feel sick? My husband Mike was sick at home with COVID 19 in Mid-March, and as he likes to say now, he and I had established “separate kingdoms” at home during the week he was sick here. I slept on a pull-out bed in my office, his kingdom was our bedroom, and as his illness continued to get worse, he spent days and nights in bed there with the door closed. And yes, Luna missed him.I didn’t want to be far from home during that time, so I donned a mask, wore disposable surgical gloves, and kept Luna’s walks very routine. And short. Boring for her, and she expressed her ennui by lying flat on her stomach with her chin on the floor.

• After Mike was admitted to the hospital, do you think Luna knew he was gone? Yes. Mike was in the hospital seven days in March with COVID 19, and before he was allowed to come home he had to spend three additional COVID-free days in a Chicago hotel designated for patients recovering from the virus. During those ten days, I kept the door to his kingdom closed tight for fear of being exposed to the virus. . Luna started looking out the window hoping to find him somewhere out there.
• How’s Mike doing now that he’s home?He’s still recovering, gaining strength every day and playing lots of games of catch with Luna.
• So Luna likes to play? Yes! When their harnesses are off, it’s good for Seeing Eye dogs to play and relax. Dog parks in our area are closed right now, so Luna is left to chase her ball and Nylabones around the house. Mike throws a ball better than I do, see above about her searching out the window for him while he was away.
• Was it hard to take care of Luna when Mike was in the hospital and you were all alone with her? The Seeing Eye trains all of its graduates to care for our dogs on our own, whether we live alone or with others. It’s dark when she goes for her last outing of the day, and for safety’s sake here in the city he usually takes her out for that final “empty.” Without him here, I donned a mask for Luna’s nightly walk and, assuming bad guys are staying home during the pandemic, I wasn’t scared.
• Does your dog get confused when you wear a mask? Well, she doesn’t balk if I’m wearing the mask and call her to come, and she follows my commands en route, which means she can hear my muffled voice through the mask. Her sense of smell is wayyyyyyyyy stronger than her sense of sight or sound, so if anything is confusing her right now, it’s my aroma: I didn’t used to wash my hands every 20 minutes!
• Was Luna a comfort to you while Mike was sick? Luna was a tremendous comfort to me throughout Mike’s illness. She’s a good listener.

Stay tuned for Part Two, when I’ll talk more about what sheltering in place with Luna is like now, with Mike home and things back to normal –whatever that is!

Therapy Guidance for Parents of Children with Special Needs

by Yolanda Green

Marsi Jackson is mom to 2 and a half year-old Langston, who has Down syndrome and has been attending Easterseals DC Inclusive Child Development Center. 

At Easterseals, Langston receives a variety of services from a speech-language pathologist, physical therapist, and occupational therapist through the early intervention program to help overcome some associated challenges with mobility, play and communications.

Easterseals’ speech-language pathologist, Corinne Zmoos, MS, CCC-SLP, recently chatted with Marsi for this blog to discuss how they were doing during the coronavirus pandemic and find out how they were adjusting to the transition of receiving therapy services virtually.

Corinne: Thanks so much for taking the time to share your experience. First, can you tell me how has the outbreak of COVID-19 impacted your family’s life?

Marsi: For the most part, it has been okay, but there are moments when we really miss our extended family. My children miss their friends and I miss my friends as well. Just being able to go out and have lunch seems like a foreign concept. I never thought I would say, “What would it look like to eat with friends?” Now I think about every little thing. It has me thinking a lot about what is next for our family. What will our new normal look like?

Corinne: It really has reframed what “normal” feels like and looks like as a community. What role would you say Easterseals has had on your family’s life before and after this pandemic?

Marsi: Easterseals has been a great. I don’t see at it as just a daycare, but a place where my son could thrive with other children, his teachers, and his therapists. He is growing in ways I never thought. I don’t know of another place like Easterseals. I’m lucky to have gotten Langston in so early. Now, with COVID-19 creating stay-at-home orders, Easterseals has been reaching out and providing the same therapy services online.

I was excited to hear that because I was worried about Langston losing all of the skills he learned, but hopefully he’ll return with more skills. The therapy sessions actually give us structure and it helps me remember what day it is. It’s been go for good for all of us. It also gives me confidence that when we do go back, Langston will still be excited about Easterseals.

Corinne: Being able to work with you and Langston every week gives me structure, too! Can you share what it is like to be a mother of a special needs child during this pandemic?

Marsi: As a mom of a child with special needs, my initial concern was whether the coronavirus was going to make my child very sick, especially since he would be considered one of the most vulnerable. I was afraid to imagine what that would look like for him. When we first started staying in the house, I thought I had to keep up with his routines like in daycare. It was incredibly frustrating because I couldn’t get him to take a nap and eat when he was supposed to. Eventually, I realized that we needed to choose our battles and take it one day at a time. And I am grateful that he is healthy, happy, and I can tell he continues to thrive more each day.

Corinne: It sounds like you were concerned that the way you interact with him would not be enough for him to grow, and yet you can see that he’s thriving at home. What have you learned about yourself and your strengths?

Marsi: [laughs] That I can actually do OK! Langston has special needs and for the longest time I’ve always thought: I’m not a therapist, I am just a mom. So, I leaned on Easterseals to help him because you have people who specialize in helping children like him. But I’m slowly starting to let go of the ‘I’m just a mom’ idea. I have been looking up articles and researching different things I can do to help him learn. And I am grateful for all the strategies you have shown that I can do with Langston right at home. I’ve also come to understand and follow his cues more.

Corinne: That’s what I’m talking about! Your consistent enthusiasm and ability to follow his lead makes all the difference. What is the most encouraging lesson you have learned from Easterseals to be able to help Langston during this difficult time?

Marsi: The most important lesson I have learned from you is to see moments as an opportunity for learning. For example, when we are asking, “What is Langston doing right now?”, I always try and figure out how can we turn that into a learning moment. That alone has helped me gain confidence in myself when I don’t have access to your professional help.

While we’ve been at home, I have found moments to practice words, fine motor skills, and practice movement like crawling in any routine and I’ve been able to teach him the things I remember you have taught me. And if he’s not feeling it, I say that’s fine and I just wait for the next moment. In the beginning I did have doubts. I remember thinking, ‘I don’t know if this is going to work out. I’m going to fail. They’re going to be disappointed.’ Then, I remembered your advice that he will give me the cues and that’s when I can help him learn.

When this pandemic is over, I’m going to cherish these moments we’ve had staying at home together. I’m also grateful to know that if push comes to shove and we have to stay home again due to a lock down, this time I know I can do it. I feel confident of that because of Easterseals. And I know Langston can do it, too. Just watch.

Corrine: Finally, what do you want people to know about the impact COVID-19 has had on your community?

Marsi: For my community, the one thing I want people to know is to take seriously the recommendations of social distancing, wearing a mask, and not going out unless you need to. I know it’s hard because we want to be free to do what we want, but we have to think of others before we think of ourselves. All I can do is do my part and I’m hoping that by doing that, I can help someone else be okay.

Opinion: Why Reopening Early Frightens Me

by Beth Finke

Looking forward to our next Brewers game together, but we’re willing to wait.

Regular blog readers know about our son Gus – he was born with a rare genetic condition that left him with pretty severe developmental and physical disabilities. Since 2002, Gus has lived in a group home with three other guys in Watertown, Wisconsin. My husband Mike and I live in Chicago. Normally we get up north to visit Gus about once a month, but his group home has set up strict guidelines — no visitors. As difficult as this has been for all of us, we are comforted that our son is in good hands with people who have been going out of their way to keep a pretty vulnerable group of clients safe and healthy.

All the Direct Service Professionals (DSPs)—at his group home – those are the people who do the hard work of caring for people like Gus –are following strict PPE and cleaning protocols. The DSPs also took pledges to limit their own contacts outside of work. So while we’ve missed our visits with Gus, we haven’t been worried about his general welfare.

Until last Wednesday.

That’s when the Wisconsin Supreme Court struck down the state’s stay-at-home order. That ruling meant some businesses and restaurants could open immediately. The group home Gus lives in is in Jefferson County, halfway between Milwaukee and Dane County.

So here’s what I’m worried about: re-opening early means more community exposure. Staff coming in and out of the group home are more likely to unwittingly spread the coronavirus to Gus and his roommates, and people with disabilities of any age are more likely to have underlying health conditions that put them at greater risk of serious complications and death if exposed to the virus. A Wisconsin Public Radio story earlier this week reported that before last Wednesday’s ruling 32 state and national groups filed a brief laying out the increased risks of COVID-19 infection for communities of people who are older and/or have disabilities. From that story:

Many people from these communities live in long term care facilities and group homes, the brief notes, where there’s a higher risk that infections can spread. Plus, caregivers who provide in-person care and services are not able to social distance, and a shortage of personal protective equipment could put that caregiving workforce and their clients at risk.

The people who work with Gus and his roommates are often referred to as heroes. Rules or no rules, I hope we can honor them by doing all we can, including staying at home a bit longer, to keep them safe.