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!

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.

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.

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.

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.