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!

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.

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!

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.

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.