To Moms with Disabilities: You are Valued!

by Yolanda Green

This Mother’s Day, we are thrilled to introduce Sofiya Cheyenne as a guest blogger. Sofiya is a mom, actor, performance artist, teaching artist, and disability advocate. She was recently featured in the ‘That’s My Easterseals‘ PSA series to promote access to education for all children.

When my son Logan was born almost two years ago, it was the most transformative day of my life. I never knew I could love someone so quickly and fiercely; that’s when I realized being a mom changes you completely. And as a parent with dwarfism who gave birth to a child with dwarfism, I knew that this new love of mine would encounter barriers in his life, just like I have. Taking on this job is scary for any parent, but I am so lucky to have a supportive network. My friends and family have been encouraging of my growing family – especially since Logan is the first grandchild in both my family and my husband’s; it was a big deal!

Even with all the support I was privileged to have, the toughest thing about being a mom with a disability is the stigma that exists around it. When someone is pregnant, regardless of disability, the medical industry works so hard to convince these new families of a “healthy child.” What that means to mainstream society is “perfect genetics” with no differences or uniqueness – just predictability. The medical industry, and even society, can make you feel like you don’t belong and that you cannot or should not have children. They can make you feel like that you are not equipped to handle motherhood because of your difference. It is harsh, it is ugly, and it is wrong. And as you move through the world, you have to ignore these things. You have to push against these assumptions and literally dodge the negativity.

We MUST prove them wrong. It is only us that knows what our lived experience can be – our lived experience of survival that is beautifully unique. We must teach, we must advocate, we must choose the circles of doctors around us that believe the same things we do. It is exhausting and can be even defeating at times. But until the world is a place that can expect difference in the room at all times, we must push.

If you are new parents, a new mother, or a person that is starting to plan for a family, know that YOU are valued. YOUR family can thrive. As long as YOU choose the support that you need around you. YOU are in control. Do not let the doctors, the media, or society tell you otherwise. There ARE high-risk specialists and there are communities of support that value you as a person – you just have to do the work to find them. There are supportive policies and laws that exists today, thanks to the Americans with Disabilities Act, that can support your family. Your state, your county, and your school districts should all have information to support you in your child’s life.

I would encourage nondisabled and disabled people expecting a child with a disability to follow disabled parents on social media and read books by people with disabilities. Embrace disability culture and don’t be afraid to ask questions! Ensuring your child who has a disability has a connection to their disability culture is so important – it lets them know they always have a community to go to for support at belonging. The disability community needs each other to thrive and to survive – so why not give them access to culture from the very start?

Being a mom has made me a more confident, focused, and patient person. It is a selfless act, but it is also something that, if you lean into it enough, will help you grow. I don’t think there is anything different about being a mom with a disability – I just think that it comes with a different perspective. Because my son has dwarfism, my husband and I are so well equipped to handle any obstacle that comes in our way with Logan. We’ve been there. I believe in you, too – parents with disabilities out there, you’ve got this!

Business Owners: Get a Tax Credit for Making Accessibility Upgrades

by Beth Finke

Hey, it’s tax season! If you are a business owner or employer who hasn’t heard about incentives to make accessibility upgrades, check out this helpful reminder from the Mid-Atlantic ADA Center. The site provides quick tips to help you figure out if you qualify. It includes an easy-to-read chart outlining federal tax incentives and shows you how to find out whether your state offers similar incentives. Three examples spell out how it might work for your business:

• EXAMPLE A, CREDIT: Restaurant ABC employs 25 individuals, and its gross revenue for last year was $3,000,000. It qualifies as a small business with fewer than 30 employees. Last year, ABC provided Braille and large print menus (an auxiliary aid), costing a total of $1,500. ABC removed physical barriers to the restaurant’s entrance and modified its transportation shuttle, totaling $8,000. Each of these expenditures qualifies under the Disabled Access Credit. To calculate ABC’s tax credit, start by adding the total amount spent on accessibility ($8,000 + $1,500 = $9,500) and subtract $250 ($9,500 – $250 = $9,250). Divide this amount by two ($9,250 / 2 = $4,625) to find the amount redeemable as a tax credit. ABC earned a tax credit of $4,625.
• EXAMPLE B, DEDUCTION: Corporation XYZ removed barriers to its building two years in a row. Although the corporation deducted $4,000 from its taxes last year, XYZ spent money on an additional barrier removal project this year. This is an annual tax incentive, so XYZ is eligible for another tax deduction. XYZ removed all barriers from its bathrooms this year, which cost $8,000. XYZ is able to deduct this amount, $8,000, dollar for dollar, from the amount of money on which it pays taxes.
• EXAMPLE C, CREDIT & DEDUCTION: Small business QRS spent $20,000 on access improvements by modifying their restrooms and front entrance. These expenditures qualify under both the tax credit and deduction, so QRS can use these incentives in combination. QRS may first take a tax credit of $5,000 (based on $10,250 of expenditures) and then deduct $15,000 (the difference between the total expenditures and the amount of the credit claimed).

Whew! That’s a lot of numbers. If you have questions, never fear – the site offers many other resources, and it encourages you to call the ADA National Network for free technical assistance at (800) 949-4232.

This Tutorial Will Help You If You Have a Service Dog

by Beth Finke

With so many Americans planning to travel over spring break or for summer vacation this year, I’d say the Southeast ADA Center has perfect timing: it just released an instructional video on service animals for transit workers.

Accessible and easy to understand, the short, captioned animation for transit providers offers an understanding of the rights and responsibilities transit providers and service animal handlers have under the Americans with Disabilities Act (ADA). You can find it on the Southeast ADA Center YouTube Channel.

The video describes the purpose of the ADA, defines what a service animal is under the law, and what tasks they are trained to perform. Entertaining and easy to follow, the video will especially appeal to those with a limited understanding of ADA and civil rights: it describes the difference between service animals and emotional support or therapy animals, and describes the rights and responsibilities riders and public transit providers have under the Americans with Disabilities Act (ADA).

Best of all? The video will be made available to transit providers nationwide at no cost, which should help eliminate problems and confusion for transit workers and people with disabilities traveling with their service dogs this spring break.

Safe travels, everyone!

Deaf Community Celebrates Award for Best Supporting Actor

by Beth Finke

I am pleased to have Crom Saunders back with us as a guest blogger today. A theatre interpreter and American Sign Language (ASL) master, Crom has a M.A. in Creative Writing and began teaching ASL and Deaf Culture at several universities before getting tenure at Columbia College Chicago, where he is currently Director of Deaf Studies.

by Crom Saunders

When I saw Troy Kotsur perform as Stanley in Deaf West Theatre’s A Streetcar Named Desire in 2020, I knew, or at least hoped, he was destined for a distinguished career as an actor.

In the years since, Kotsur has held some acclaimed roles on Deaf West’s stage, and several film appearances, but nothing that garnered nationwide attention until the 2021 film CODA.

Troy Kotsur was nominated for Best Supporting Actor at the 94th Academy Awards. That honor was well deserved in the eyes of many film aficionados and critics. After all, Kotsur has already won several other prestigious awards (such as the Screen Actors Guild Award for Outstanding Performance, plus the Independent Spirit Award and the Critic’s Choice Award for Best Supporting Actor) for his portrayal of Frank Rossi in CODA, a feather in the collective cap of the American Deaf community.

The Oscar nomination was also the first Actor/Actress nomination for a Deaf actor since Marlee Matlin’s win for Best Actress at the 59th Academy Awards in 1987.

Troy’s portrayal of the patriarch of an all-Deaf family, except for the single CODA (Child of Deaf Adults), who makes a living as a fisherman in a small town is excellent in every aspect. His characterization, his expressiveness, and language articulation and delivery all create a very memorable role. CODA is more progressive than many films with Deaf characters in the casting of Deaf actors and actresses for all Deaf roles, and giving American Sign Language the importance it deserves. I don’t always watch the Academy Awards, but I did watch this year — in full support of Kotsur and the cast. I was hopeful (and confident) that Kotsur would win Best Supporting Actor for his stellar work.

And he did! His career can only grow from this point, a good thing for Kotsur himself, but also for audiences everywhere who can appreciate his skill. My hope is that his win will lead to more modern, Deaf-centered films that have mainstream appeal but also give Deaf people the representation they crave and deserve.

Unimaginable: Keeping Sons and Daughters with Disabilities Safe During a Crisis

by Beth Finke

Gus and Beth

A BBC News story titled Chaos, upheaval and exhaustion for Ukraine’s disabled children caught my attention earlier this week. The piece was written by Fergal Keane, a BBC News reporter who rode with a bus full of children with disabilities and their caregivers who were escaping their homes in Kharkiv to safety in Poland. The city of Kharkiv was one of the first targeted in the Russian invasion.

My heart went out to them and, especially, to their parents. I know firsthand how heart wrenching it is to realize you can no longer keep a disabled child safe at home and resolve to find a group home or facility where they can get professional care. But having to say goodbye to a disabled child to keep them safe from war? Unimaginable.

The bus had been travelling for thirty hours when Keane was writing his story. The journey started with car rides through war-torn Kharkiv to the train station, then a train ride from east to west to finally board the bus. The trip to the train station was their first trip outside of a bomb shelter since the Russian invasion began. He says, “Shells were falling close by and the noise sparked terror in the children.”

Our son Gus was born with developmental disabilities due to a genetic condition called Trisomy 12p. Gus can’t talk or walk. If his food isn’t cut into bite-sized pieces, we have to feed him.

Gus communicates by crawling to whatever it is he needs. He can manipulate a wheelchair, too, and when he wants to hear music, he rolls himself to the piano. Gus laughs and sings with the tunes and claps with delight whenever he hears live music. As a child, he loved to hold hands, especially while swinging on a porch swing.

But as Gus grew bigger, my husband Mike and I grew older. And weaker. Shortly after Gus’s 16th birthday, we realized it was time for him to move away. Mike and I placed him on waiting lists all over the country, and when a facility four hours away contacted us to tell us they had an opening, we took it.

Gus cried his entire first week away. So did we. But we knew where he was, we knew who would be taking care of him, and we can go and visit him anytime. All luxuries these parents in Ukraine likely won’t have with their disabled children. Unimaginable.

Disability Awareness: Teaching Kids How Cool We are

by Beth Finke

Photo taken in a third grade classroom at Braeside School in Highland Park, Illinois (Credit: Ashley Bakal)

Last week, my Seeing Eye dog Luna and I visited three different schools to talk with third graders about guide dogs and what it’s like to be blind. It was great fun, but I got to be honest: two years without any in-person visits to schools left me a little rusty.

During our first presentation, the one at Indian Trail Elementary, I forgot to give Luna the “Outside” command at the end so they could see how well guide dogs maneuver around obstacles (including 3rd graders sitting crisscross applesauce on the floor) to guide me to the door to the hallway.

At the second presentation, the one at Braeside, I never took the Braille version of my children’s book “Hanni and Beth: Safe & Sound” out of my bag to show them how Braille works.

Third time’s the charm, though: the kids at Ravinia Elementary School got the whole show. And here’s the good news: no matter what I did or did not remember to do in those three presentations, the questions the kids asked afterwards were as thoughtful and sweet as ever. Here’s a sampling from the third-graders Luna and I met at Indian Trail, Braeside and Ravinia elementary schools this past week:

• So is going blind like closing your eyes for the rest of your life?
• Do you remember what colors looked like when you were a little kid and could still see?
• Was it hard to make friends after you were blind?
• You said you only see the color black, but if you got really, really close to a bright light, would you know the light was on?
• How do you swim if you can’t see where you’re going?
• So if you see the color black, but you can tell close up if something is white, does it look brown?
• Did you ever drown?
• When you drive, do you, like, have to use, like, a navigator thing or something?
• So if you still remember colors, when you are imagining things, do you see them in color then?
• I know we’re not supposed to pet your dog when she’s working, but when you pet her, how does she know it’s you who is petting her?
• If you don’t drive, then do you take a taxi?
• How do you get on the plane if pets aren’t allowed on planes?
• Where does your dog go when you take a taxi?
• Is your dog blind, too, or just you?
• Do you inspire other people?

With all of us wearing masks, some of the questions were hard to hear. Did that little boy just ask me if I inspire people? How do third-graders even know the word “inspire?” Repeating his question out loud gave me time to think. These schools all participate in a weeklong ”Disability Awareness” program, and from what I’ve observed, it really works.

Days before my visit, the kids had met a Paralympian who uses a wheelchair to win track and field medals. During her presentation, she showed them how her prosthesis works. “It was really cool!” one of the third-graders told me. After I left, they’d be learning to say “hello” and “My name is…” in sign language. “It’s pretty cool to meet all these people with disabilities,” one of them said.

That was my cue.

Do I inspire people? “Well, I do a lot of things, you know, like go to concerts and eat out at restaurants and swim at the health club and travel in taxis and airplanes. Maybe getting used to seeing me out and about having fun does inspire people to make friends with people who have disabilities,” I said. “Because like you all know, we can be pretty cool.”

And you know what? Those third graders were pretty cool, too.

Do We Need Self-Description? Is it Good Disability Etiquette?

by Beth Finke

I’m Beth. This is my back. I have a red coat.

A journalist contacted me a few months ago. “I’m working on a story about restaurants and accessibility,” she said. “Would you be willing to meet me for an interview?”

Of course, I said yes.

We met at a local restaurant and after introducing herself, she asked, “Do you want me to tell you what I look like?”

I answered the reporter’s question with a question of my own: Why would I?

“I don’t know,” she said with a nervous chuckle. “I just read on the internet that I should describe my physical appearance when I introduce myself to someone who can’t see.”

I hated hearing this. I have no idea where this declaration started, but it sure has sprouted up on a lot of “disability etiquette” lists lately. Maybe it has something to do with all the Zoom meetings people have been on lately. In the past year or so, I’ve attended more and more events (live and virtual) where the speakers or participants are told to “self-describe” themselves before starting their presentations. You know, for the “benefit of people in the audience who have a visual impairment.”

For me? I’d rather not know. Asking people to describe what they look like is awkward. And let’s be real – can I trust anyone’s self-assessment, anyway?

A dear friend of mine died a few weeks ago. A tenured professor in urban planning, she traveled all over the world researching and lecturing on affordable housing (including significant work in housing for people with disabilities). Her husband worked with her staff and graduate students for an entire week to set up and present a virtual celebration of her life, and more than 300 colleagues, students, family and friends zoomed in. It being virtual and all, people living everywhere from Beirut to Hamburg, Miami to Walla Walla Washington could celebrate her with us, too.

I felt honored to be one of the dozen attendees asked to give a short presentation at the event. Knowing my friend’s co-workers and grad students were responsible for the technology assured me it’d all be accessible. I’d be able to “mute” and “unmute” using my screen software.

And I was right. It was.

When I sent an email their way the next day to thank them for their technology prowess, one of them responded with an apology. “I am glad you felt the event was accessible,” they wrote. “I was a little concerned about that. I wondered if we should have had all the speakers describe themselves first.”

Argh! I’m sorry they felt this way. Self-describing takes time and I was much more interested in hearing what people at the celebration had to say about our friend who had died than hearing what the people telling the stories think they look like.

During my short presentation, I mentioned that one advantage of being blind is that you get to walk arm-in-arm with friends a lot. This friend and I walked arm-in-arm everywhere – to the Chicago River, the Chicago Lakefront, Printers Row Park, Millennium Park, nearby restaurants, concerts, and our local wine shop. Walking arm-in-arm makes it easier to hear each other, and the conversations we had –especially in these past two years while she was battling ovarian cancer – are a gift from her to me.

Another advantage of being blind? Not knowing what people look like. I’m left to judge others by what they say and what they do.

Something about this new emphasis on having people self-describe themselves seems counter-intuitive to efforts to become more diverse. Do I need to know what people look like to judge what it is they are saying? I’d rather have them introduce themselves by saying their name and what it is about them that prompted the event to invite them as a presenter.

Which is exactly what happened at the celebration for my friend. Tears were shed, yes. We laughed some, too. Friends and colleagues spoke with Italian accents, English accents, Scandinavian accents and in all sorts of American dialects. I suppose we all looked pretty different from each other, but who cares? The one thing we have in common was far more important: our love of — and gratitude for — our friendships with this incredible woman we are all going to miss.

From Bah Humbug to Beautiful: An Accessible Christmas Carol

by Beth Finke

Credit: goodmantheatre.org

Back in November my 26-year-old niece Anita texted me:

Beth, quick question for you. Do you have any interest in possibly going to see A Christmas Carol at Goodman Theater?

Here in Chicago, some families go to the Goodman to see A Christmas Carol every year. How pedestrian! Truth be told, I kind of sort of rolled my eyes at Anita’s suggestion. Bah humbug! I’d seen A Christmas Carol done at community theater in the past, and I like watching it on TV during the holidays, but I had never ever wanted to join the throngs of everyday people who go to see it at a theater and thought it best I keep it that way.

But then came the back-and-forth texts. Anita’s girlfriend Kelly would be coming as well. They had chosen a date that offered a pre-show audio tour for blind people.

Anita grew up around disability. I became blind before she was born, and she and her mom lived in the same town we did when we were raising our son Gus, who was born with physical and developmental disabilities and uses a wheelchair. Her father is from Jamaica, her mother is white, and she’s all about diversity and inclusion!

And then there’s this: Anita and Kelly are a fun couple, so smart and witty that we share a lot of laughs whenever we’re together. And, okay, it was pretty flattering to think they’d go out of their way to spend an afternoon at the theater with their old blind great aunt Beth. No more bah humbugs! I said yes. And am I glad I did!

Tickets for A Christmas Carol are usually quite expensive, but in its efforts to be “a theater for all” and a “place where diverse audiences experience extraordinary productions,” Goodman offers reduced-price tickets to people who attend the touch tours. Anita and Kelly were accompanying their blind old great-aunt Beth, so they got the same discount I did.

Seeing Eye dog Luna guided me from home to the theater to meet Anita and Kelly last Saturday, I showed my proof-of-double-vaccination card with pride, and handed over my ticket. “Box seats!” The ticket-taker sounded impressed.

When Goodman’s’ house manager/accessibility coordinator Andy Wilson greeted me in the lobby, he explained they save those box seats for people who might find accessing regular theater seats difficult. “Your box is on the main floor,” he explained. “No stairs!” Bonus: Box seats are great for social distancing, and Black Lab Luna could sprawl during the show without bothering anyone else.

Andy directed Luna and me to our starting point in the lobby, where they had three of the understudies’ costumes available for me to touch (the ones the actors would be wearing were not available for obvious reasons). I appreciated having the costumes displayed on dressmaker dummies — that way I could feel the fabrics with structure and imagine how they might look — and fit. A costumer from the show was on hand to give me the back story on each piece. My favorite? A top and hoop skirt worn by the Ghost of Christmas Present. I was encouraged to touch the fabric, the stitching, the piping, the braids, the brocades, the hoops, everything.

Anita and Kelly showed up in time to enjoy some of the costumes, and from there the two of them escorted me into the theater to meet some of the main actors in the play for the pre-show. One of them was the one playing the Ghost of Christmas Present — the one who’d be wearing the hoop skirt. “I’m supposed to look like a Christmas tree,” she laughed, then went on to explain the real reason behind the hoop skirt. “It hides the harness I have to wear.”

Harness?

Yes, harness. She wears it to hold up the weight of the Christmas tree hanging off her shoulders. “A couple other actors wear harnesses under their costumes, too,” she added, explaining that Scrooge and the Ghost of Christmas Past actually fly during the show. “They need harnesses on to do that.” My mind went right to my childhood, when I marveled at the TV presentation of Sandy Duncan flying in the Broadway revival of Peter Pan.

The actors chatted briefly about their role in the play, their appearance and/or physicality and how they might approach that in their portrayal. The Ghost of Christmas Present described herself as having “brown skin and black hair” and told us she plays a charwoman near the end of the play, too. Each actor gave us a few lines from the play and it was astonishing to hear the Ghost of Christmas Present sing one of her lighthearted lines from when she’s in her hoop skirt, then transform to a baritone charwoman for that later scene…all right before my very ears!

The last actor to describe themselves was the Ghost of Christmas Past. You can get a great example of how generous the actors are with their descriptions hear by listening to a recording of Lucky Stiff describing what it’s like to dress as the Ghost of Christmas Past for every performance. (Use the link to the audio player below.)

Ghost of Christmas Past Goodman Touch Tour

When Goodman’s Andy Wilson explained that they switch up the performance every year, I couldn’t help but laugh. “Sounds like this one’s gonna be like Cirque du Soleil!”

• • Musicians on stage throughout the play portray buskers on the street outside of Scrooge’s office –sounded to me like a bass, a French horn, a violin, a recorder, an acoustic guitar, even an…accordion! So nice to hear live music on stage again.
  • Rather than Scrooge having a nephew Fred, in this version he has a niece Frida who invites Scrooge over every Christmas.
  • The party where all the dancing goes on is traditionally at Mr. Fezziwig’s place, (he’s a businessman who uses Scrooge as his banker) but in this version the business is owned by two women. Mrs. Fezziwig & Mrs. Fezziwig dance together in this scene.
  • Tiny Tim is portrayed by a 12-year-old Chicago girl whose parents immigrated here from India
  • And lest we forget: some of the characters fly — Scrooge flies with Lucky, the Ghost of Christmas Past.

Anita, Kelly and I learned most of what I’m reporting above from going to that “audio tour” before the show. During the pre-show the actors explained to me exactly when the flying scene would happen, how the flying contraption works, how heavy it is to wear and so on. Audio describer Jason Harrington jumped on stage at one point to walk around it and describe the setting and scene changes — so helpful.

Forgive me for going on and on about this. I had a wonderful time with Kelly and Anita, they both were so kind-hearted, totally comfortable around me and very helpful, too: ordering coffee before the show, snacks during intermission and then a Lyft ride home afterwards.

Just heard this morning that Goodman has cancelled some of their upcoming shows due to the surge of the omicron virus, so I’m especially glad we got there when we did. Time with family at A Christmas Carol got me into the Christmas spirit this year, a happy feeling that won’t go away.

What is National Special Education Day? Why is it Critical That We Observe it?

by Team Easterseals

In celebration of National Special Education Day, Team Easterseals is in conversation with Erika Watson, the National Director Childhood Development, Education, and Equity at the Easterseals National Office. 

What is National Special Education Day? Why is it critical that we observe it? 

National Special Education Day was first celebrated in 2005, which was the 30th anniversary of the Individuals with Disabilities Education Act (IDEA). It is important to acknowledge Special Education Day because nearly 14% of all public-school children—7.3 million children—receive special education services guaranteed to them by IDEA.  

That is 7.3 million reasons to honor the hard work, the wins, and the possibilities of young people on their unique pathway toward fulfilling their potential. It is important that we observe this day to bring attention and awareness to the special education system to ensure that the most vulnerable students among us have access to everything that they need to be successful. It is important to highlight the children, people and families that are beneficiaries of this work. 

What is The Black Child Fund at Easterseals? 

The Black Child Fund was launched by Easterseals in the aftermath of George Floyd’s murder and the BLM movement from summer 2020. The Black Child Fund is focused on the intersectionality of race and disability and aspires to disrupt systems of educational inequity and improve long term outcomes for BIPOC youth with disabilities.  

Easterseals aspires to be a thought leader and convener of people, ideas, and resources aimed at mitigating disparities that exist for BIPOC youth with disabilities in educational outcomes and social indicators of health and wellbeing. 

What are the disparities that Black students and Black students with disabilities face in education? How is The Black Child Fund working to end those disparities?    

Black students are the largest population in the special education system, and the most underserved. About 14% of all public-school students receive special education services. Of that 14% the largest percentage of those students identify as Black/African American. Despite being over-represented in the special education system, outcomes for Black children receiving special education services lag behind those of every other group. For example, 72% of all special education students graduate high school with a regular diploma. However, only 65% of Black children who receive special education services graduate high school with a regular diploma.  

While disability does not occur more frequently in the Black community, Black children are often over identified as having behavior problems or not being school ready thus creating a pipeline of Black students into the special education system that often does not serve them equitably.  

The Black Child Fund seeks to elevate the cultural competence of special education advocates, teachers, and practitioners so that all professionals serving BIPOC students with disabilities are doing so through a culturally responsive lens. 

Why is this work important to you? 

This work is important to me because I fundamentally believe that education is the most powerful lever that we have to disrupt the effects of generational poverty within communities of color. Full Stop. Period.  

If I can be even more pointed about it, it is the education of not all young people, but specifically the education of girl children because when we change the trajectory of our own lives, we then change the trajectory of our children’s lives. If you really want to disrupt the effects of generational poverty, educate young girls of color. 

What is a milestone of special education that you are most excited about? Why? 

The willingness of people and institutions to have a reckoning with the racial injustices of our current system. I believe that the soil is fertile and now is the time to have hard conversations about racial inequalities. People are open to hearing, taking action and wanting to be a part of the change that we want to see in our culture and in our communities.  

Where must special education improve?  

We must do a better job of educating BIPOC youth with special education needs. Culturally inclusive and culturally responsive pedagogy must become ubiquitous within the special education system.   

What do you see next for the education system to ensure education is available and equitable to all children with disabilities? 

My hope is that meaningful funding will follow all the goodwill and good intentions. Small ideas that are working well in pockets still need a larger platform. We need resources so that we can scale them to benefit all children. 

How has the pandemic shaped the experience for children with disabilities and their education? What has changed for them, and what issues are most pressing as we continue through the pandemic?   

There is no doubt that all students suffered academically as a result of COVID. Learning loss for all students is real. Access to services has been the prevailing challenge through the pandemic and this problem persists even though students are back to in-person learning. 

The number one problem that we saw as a result of the pandemic was that 3-5 million K-12 students received no formal education at all starting in March of 2020 through the fall of this year when we went back to in-person schooling.  

It has been nightmarishly hard for everyone to manage education through COVID, and special education populations have felt this more acutely then just about any other unique group. When general education gets a cold, special education gets pneumonia. And I would suggest that special education in poor and rural communities is where the pandemic has done its biggest damage. 

It has been nightmarishly hard for educational growth and attainment. The learning deficits are tremendous. We are seeing catastrophic numbers in educational outcomes in the special education population during the pandemic because students have been fundamentally disconnected from education and services that are provided through the local education authority. 

What if I’m a student with an Individualized Education Plan (IEP)? That means I am not getting any of the services that my IEP suggests that I have. So, not only am I not getting formal education, but I am also not getting my speech therapy, I am not getting my behavioral therapy, I am not getting all the educational services that my IEP suggests that I need. 

Educators and administrators are working hard to try to figure out how to solve these problems for our children, and there are not a lot of easy solutions and pathways to success, and access to opportunities when you layer on issues of poverty,  

We haven’t recovered. I can’t say what special education looks like coming out of COVID, because we’re not out. We’re still figuring it out.  

What message do you have for parents? What do you suggest for resources via Easterseals and/or otherwise?  

Find your tribe. I would love for Easterseals to be a part of everybody’s tribe. Our services are either free or pretty cost neutral even if you are uninsured or use Medicaid. These services are available to everyone.  

Also, consider a special education advocate. You can reach out to Easterseals to find a Special Education Advocate in your community. These are people who know the system very well and who can be your ombudsperson in those conversations that you have with your school administrators about your students’ IEP or 504. Special Education Advocates are a fountain of knowledge and a wealth of resources, and they connect you to other resources in your community. If you do not have a Special Education Advocate, get one! 

I also encourage parents to reach out to Easterseals or other organizations to find an affinity group for yourself so that you can learn to become the strongest, most effective advocate for your child possible. In doing so, you will also teach your child to become a strong and effective self-advocate. 

Also, always remember that the squeaky wheel gets the grease. Don’t be afraid of being a constant presence at your child’s school, and in your teacher’s email inbox. You are their partner, and no one knows your child better than you. You need to work with your education partners to make sure that your child is getting everything they need at school, and that you are doing everything at home to make sure that there is a consistent focus on education both at home and at school.  

Your child should not feel that there is one set of expectations at home and another set of expectations at school. You want to have relationships with your educators and school administrators.  

Learn to be an advocate for your child, and this will teach your child to be a self-advocate.  

Anything else you would like to add?  

I encourage more people to reach out to Easterseals. We are here to help. We want to bring more people into this tent. Right now, there is a big tent and there are not enough of us in it. The best way to make progress is to bring in more people and more resources into the tent. Let’s get to work! 

Self-Advocating for Reasonable Accommodations: Four Women Share their Stories Tonight

by Beth Finke

Tonight, Thursday, November 18, 2021, I will be one of four women with disabilities on an hour-long free Zoom panel sponsored by the Skokie Public Library:

Self Advocacy and the ADA–Online Event: Personal Perspectives, Challenges, and Success Stories
Thursday, November 18, 2021
7:00 pm – 8:00 pm
Zoom Event

What does self-advocacy look like when navigating the world with a disability? Four panelists from different fields share stories of how they’ve advocated for reasonable accommodations.

Panelists will share lessons learned and provide tips on fighting for more fair and just treatment in the workplace and beyond.

The three panelists with me are Deirdre Keane, a teacher/librarian who was born with a hearing loss and got a cochlear implant during her freshman year in college; Michele Lee, an experienced finance professional who uses a wheelchair; and Tina Childress, a late-deafened adult with bilateral cochlear implants. The four of us will each be given 10 minutes to tell a few personal stories of advocating for ourselves, leaving time afterwards for discussion and questions. My plan is to talk fast and describe three experiences, one a success, another a collaboration, and the third a failure:

1. Appearing at a Chicago city court after a cab driver refused me a ride with my Seeing eye dog.
2. Graduating from training to volunteer with hospice and never being paired with a patient
3. Challenges I faced when the health club I’d been swimming at closed due to COVID and no other indoor pool facility would allow my Seeing Eye dog to lead me poolside to swim laps.

The hour-long panel is free, it will be hosted on Zoom on Thursday, November 18 at 7pm CST, and you can register for it here. There’s a spot on the registration form to enter a library card number, but a library card number is NOT required to register. You can attend free of charge even if you are not a member of the Skokie Public Library. Questions? Call the library at 847-673-7774.