"Your life and mine shall be valued not by what we take... but by what we give." Those words, spoken by Easter Seals' founder Edgar Allen over 90 years ago, began a movement. Today, we're thankful to you for being a part of that movement. With over 50 million Americans living with disabilities, our work is far from complete. We encourage you to help us call attention to the experience of people with disabilities, and to raise awareness of and advocate for the services they need to live, learn, work and play in their communities.
In the spotlight
Livv Pilat's transition from Easterseals Birth to Three, to the Children's Academy and now onto Kindergarten.
Behind the Screen: Conversations with a Disability Advocate and Filmmaker
Wednesday, May 24, 2023, 12:17 PM
As a teenager, Alexander Freeman was weary about listening to his mom’s suggestion of taking a…
As a teenager, Alexander Freeman was weary about listening to his mom’s suggestion of taking a film class in high school, but he eventually gave in. Years later, he admits his mom was right – taking that class inspired a new passion with the medium and launched his career. “I took the class and absolutely fell in love…I think, on a really basic level as humans, we are drawn to [it] and we can’t help but listen to what’s happening on the screen,” Alexander explained.
Now an award-winning filmmaker and disability-rights activist, Alexander was recently featured in LA Weekly Magazine for his documentary, The Last Taboo. The documentary explores the topic of sexuality and intimacy from the eyes of disabled adults. Alexander has Cerebral Palsy and uses his own experiences and the true experiences of others to inspire his work. His other documentary,The Wounds We Cannot See, which shares one woman’s real battle with addiction, PTSD, and mental illness, is available for purchase on Amazon Prime Video.
Alexander described how filmmaking took the utmost priority in his life at an early age: “I didn’t really have a ton of friends in high school or a lot of room to socialize, so I was just like, ‘I don’t need people’ – I am just going to focus on what I am good at. So, all through high school, I made films.”
That focus paid off. “At the end of school, I got very lucky because I caught the attention of a production company,” he said. That company saw Alexander’s work and immediately offered to finance his next project. From there, his career began.
When asked about his connection to Easterseals, Alexander laughed, “I really think Easterseals is in my blood!”
It was Alexander’s parents who got him involved with Easterseals Massachusetts. He recalled, “My parents were like, okay, we have a child with disabilities, what do we do? What kind of services are out there? And Easterseals was there for [them].”
Alexander on location filming The Wounds We Cannot See.
Alexander shared, “A lot of the technology that I used was directly from Easterseals, so I started working with an Easterseals technology specialist when I was really little, and then that continued as I got older and grew up.”
Alexander has one thing he wants everyone to take away from his story: “I am only where I am today because of a lot of people who helped me along the way, and I think that is a very important lesson, not just for me or people with disabilities, but a lesson to people in general…No one gets where they are on their own. Everyone must have moments where they have to look back and say thank you for all your help.”
Alexander’s disability advocacy continues the spirit of helping others along the way. His latest project, a YouTube series titled Life with Cerebral Palsy | Q & A, is described on his film production company OUTCAST Productions’ YouTube channel as “Everything you wanted to know about living with a disability, especially cerebral palsy, but didn’t know how to ask.”
A Trip to DC: Press Briefings, Panel Discussions and Sharing the Room with the President
Friday, May 19, 2023, 12:13 PM
It’s not every day you share the stage with a rising star in the television world, but it happ…
It’s not every day you share the stage with a rising star in the television world, but it happened for me!
Ben speaking at the Capitol Visitors Center
In Washington, D.C., I had the distinct honor of participating in the release of Easterseals’ brand-spanking new “State of Disability Equity and Access,” a special report showcasing the improvements made for the disability community since the signing of the Americans with Disabilities Act 33 years ago. More importantly, the report serves as a call-to-action for the necessary improvements to ensure full inclusion for future generations – a compelling reason to travel 12 hours by car to D.C., I’d say.
On stage at the historic National Press Club, I joined the transportation panel, moderated by MSNBC’s Symone Sanders. She’s incredible, and if I’m being honest, I felt right at home on stage interacting with one of television’s most popular hosts. I’ve never met an unfriendly microphone! Our panel discussed developments that have eased travel for people with disabilities, but I focused on the importance of improving the airlines to be more accessible for wheelchair users.
This isn’t a new story. A decade ago, I traveled to Washington, D.C., with a plan and a petition, advocating for more accessible airlines, desiring a system where I could fly without having to get out of my own wheelchair. The reality is, as I told The Advocate, I haven’t flown since my injury – it’s too dangerous. The current system risks major harm to my chair, and even possibly long-term health concerns. It’s not right, and I’m elated that Easterseals has joined this fight for flight!
Enjoying the Lincoln Memorial at night
Prior to my on-stage, under-the-lights discussion with Symone Sanders, we officially unveiled the report during a press briefing at the Capitol Visitors Center – a fairly new addition to the Capitol Building. Tucked inside a room that has been used for major press briefings, I spoke alongside Easterseals CEO, Kendra Davenport; Jessica Tuman, VP, VOYA Cares; Ehrhardt Preitauer, president and CEO, Caresource; and outstanding disability advocate Emily Ladau, and Kathleen Perez of the Coelho Center, who helped produce the report. Boy, was I in good company, with a group of passionate inclusion activists assembled in DC with a vision for the future. Every time I travel to D.C., something special happens – this time was no different.
Speaking of special, for the first time, our group visited the Lincoln Memorial and laid our eyes on D.C., at night, where you can actually see the reflection of the Washington Memorial in the reflecting pool. We saw and snapped a photo with Cory Booker as he was leaving the Capitol. I was even in the same hotel, the Washington Hilton, as the President of the United States!
Meeting Senator Cory Booker
Yep, when we arrived at our hotel, the woman behind the desk asked us, “will you be leaving the hotel in your car tomorrow? If so, it will be difficult if not impossible, as this place will be crawling with Secret Service.” I had to ask, “why is that?” The woman replies, “the president will be here.” My mother retorts in a very serious tone, “the president of WHAT?” The woman replies, “the President of the United States, ma’am.” Only in DC! And you better believe I worked my way into the room with President Biden!
What a trip. Sharing the same room, albeit a large conference, as the president, sharing the stage with a television star, observing the reflection pool at night, talking with Cory Booker (who, I might add, was a very kind gentleman, chatting with kids from Indianapolis before snapping a photo with me), being with my Easterseals friends, and hanging with my Change for Balance colleagues as we worked the Easterseals forum. It was absolutely another successful trip to our nation’s capitol.
Overall, my hope, and the hopes of every single one of the panelists, advocates, and champions as a part of this experience, are for the next generation of people with disabilities. Our hope is that children with disabilities will see the airlines not as a barrier, but an opportunity to explore the world. Our hope is for teenagers with disabilities to dream endlessly about their future careers, not seeing corporate America as unattainable. We have hope.
I’m a dreamer, but I believe, together, we can create a more inclusive world for all of us.
But then again, maybe I’m just starstruck from my time on stage with Symone.
Hats off to TED Talks! They highlight people with disabilities pretty regularly there, and with this…
Hats off to TED Talks! They highlight people with disabilities pretty regularly there, and with this being Autism Acceptance Month, they’re featuring an expert: a 20-year-old college student who was diagnosed as autistic in her teens.
Now a sophomore at Austin College, Kate Kahle is an advocate for autism acceptance. From her TED Talk’s bio:
She hopes to promote autistic self-love as well as help neurotypical individuals see autism not as a tragedy or a disease, but rather for what it is, a lifelong, genetic developmental disability that is just another way of thinking and being in the world.
In her TED Talk, Kate tells her audience that she’d always had autistic traits, but it wasn’t until she developed severe anxiety during her freshman year in high school that her parents took her in for an evaluation. “I just thought I was weird,” she says with a shrug.
It was then that she was diagnosed with Autism Spectrum Disorder (ASD). “We were all shocked,” she says, going on to explain that symptoms common in women and girls with autism can differ greatly from symptoms boys and men experience.
“For every four boys diagnosed with autism, only one girl is diagnosed,” she says, adding that studies following children since birth show that the natural ratio of males to females with autism is closer to three to one.
How would an inclusive society differ from the one we’re living in now? Well, for one thing, an incl…
How would an inclusive society differ from the one we’re living in now? Well, for one thing, an inclusive society would ensure people with disabilities have equitable access to four things other Americans may take for granted:
Transportation has been high on my list of concerns lately. I just booked a flight to head out East with my Seeing Eye dog, Luna, to attend a memorial service for an old friend of ours.
Flying got easier for us a dozen years ago after lawmakers made revisions to stop people from passing their monkeys, parrots, rodents and reptiles off as “service animals” in order to bring them on board. Guide dogs are well-behaved, expertly-trained and intelligent, but let’s face it – monkeys, parrots, rodents and reptiles can be pretty distracting to a dog who is trying to guide their companion safely to a seat on an airplane.
Those changes in 2011 define a service animal as “any dog that is individually trained to do work or perform tasks for the benefit of an individual with a disability.” Notice the specific word “dog” in that sentence? According to law, other species of animals (whether wild or domestic, trained or untrained) are no longer permitted to accompany individuals onto planes. Ever since that law went into effect in 2011, getting on and off planes with my Seeing Eye dog has been a breeze.
But now they’ve changed the rules again. Now I have to fill out a form with the Department of Transportation anytime I fly with my Seeing Eye dog. The form asks for information about me, my email address, phone number, etc. It also asks for our veterinarian’s name and phone number, the school where the dog was trained, how much the dog weighs, and whether or not the dog is healthy.
And oh, did I mention that the paper form is not accessible? My sighted husband has to help me fill out the form each time we fly, and I’m required to carry that form with me on board.
Each airline seems to have a different method of processing the form. Some have never seen the DOT form before, some say they also need an ID number for my dog, some ask for an identification card, some ask for certification of a rabies vaccination.
So while people who can see simply show their boarding pass and saunter down the jetway, I’m left to supply forms, certificates, and ID cards before my Seeing Eye dog is allowed to guide me onto the plane.
Once we board, we’re supposed to keep our dog within our footprint. This was pretty easy to do with my previous guide dogs (you command “sit!” – then you command “Down!” and once they’re laying down, you maneuver their bottom under the seat in front of you and have them place their head between your feet). Luna is a small black labrador retriever (she weighs about 50 pounds), so she can fit there pretty easily. But as the space between airplane seats get smaller and smaller, many guide dogs will not be able to fit there anymore.
I flew a lot more often before COVID, and back then, flight attendants would regularly offer me bulkhead seats to accommodate my Seeing Eye dog. But I’ve heard from other friends who are blind that the bulkhead is now considered “premium economy” and you have to pay extra to sit there.
It just doesn’t seem fair. I hope the advocates and staff participating at the Easterseals Policy and Partnership Forum in Washington, D.C., might talk to members of Congress and encourage them to take another look at the Air Carrier Access Act. We can build an inclusive future by making it easier for people who are blind or low vision to travel on airplanes with their service dogs!
Judy Heumann was known as the Mother of the Disability Rights Movement. It wasn’t just because of he…
Judy Heumann was known as the Mother of the Disability Rights Movement. It wasn’t just because of her undeniable impact, having led the charge through grassroots demonstrations and organizing to pass significant legislation like the Americans with Disabilities Act. She owned that title because she nurtured the movement and the people within it. Her defiance against systemic ableism was a path of overwhelming obstacles. Many people who were on that path with her looked to Heumann to help navigate the unknown, and to bring clarity to a struggle that many were going through in silence. She lifted the movement through storytelling and being candid about her own experiences.
Today, we celebrate Judy Heumann.
“We are the People Who Must Drive Change.”
The Impact of Storytelling
Making a Fuss
Because of Judy Heumann, the lives of millions of disabled people were changed for the better. Her legacy is written within the generations of disability advocates that will look to her example and ensure that her life’s work continues on.