Traveling while Blind: What Needs to Change?

by Beth Finke

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:

• Education
• Employment
• Health care
• Transportation

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!

In Celebration of Judy Heumann

by Team Easterseals

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.

Will you join them?

Learn More:

• Easterseals Facebook Live with Heumann: Demystifying Disability
• Watch Crip Camp (Netflix): Heumann stars in a documentary about a camp that inspired a movement.
• Being Heumann (GoodReads): Read Judy Heumann’s memoir.
• The Heumann Perspective Podcast

New Beginnings for a Long-Distance Relationship

by Alicia Krage

Welcome to a new year! I hope everyone is having a nice start to 2023. New Year’s Day is always my happiest day, because it feels like a clean slate and fills me with so much hope for the next 365 days.

This year is no exception. 2023 appears to be a year of new beginnings: after almost 3 years of long-distance dating with my boyfriend Juan, this is the year I’m moving to live with him in Texas!

In the spirit of Valentine’s Day, I thought it would be a good time to reflect on the last 3 years and share what I’ve learned. After trying long-distance relationships with other partners (and subsequently failing at it), I finally got it right this time.

And I learned a lot along the way.

I’m guessing some of my readers may find themselves in this same position, so I thought I’d share some of the things I’ve learned these past three years — the highs, the lows, and everything in between:

1. 1. It is not all sunshine and rainbows. I say this because I feel like rom-coms tend to glorify long-distance relationships, only showing us the best parts (the romantic date nights and airport reunions). While I do love the adrenaline rush when reunion day is upon us, it does get lonely sometimes. And the sooner you realize this, the better chances you have of navigating it.
   2. Recognize different communication styles, and learn when to compromise. Find middle ground. I’m more of a texter, while Juan definitely prefers phone calls. It’s a lot easier to send quick updates when you text, and I’m the sort who appreciates a “How’s your day?” or some sort of other message to quickly check in with each other while we’re living our separate lives. He’s gotten much better at this over the past three years. At the same time, we’ve been dating long enough now and I’m secure enough now to not always need that. I can do my own thing while he does his, and we don’t text as frequently as we used to.
   3. Learn to adapt under these different circumstances. The first time Juan met my sisters was actually over a FaceTime Video call. It was early 2021, we’d been together for about eight months, and it was peak COVID times so we weren’t able to travel. What to do? Arrange a time for all of us to chat over FaceTime! When he did meet my sisters in person, it was a little less awkward than it might have been otherwise. After all, they had spoken with him before.

• Juan’s preference for phone calls helped me get much better at open, honest, and sometimes difficult conversations. All that practice has helped me improve in-person conversations, too. When all you have is your phone to keep you two connected, you get pretty used to talking. And not all those conversations will be super fun and easy. All those phone conversations made it much easier to discuss things later on when we were together in person, and especially when I had my extended visit with him in Houston last April.
• Make sure to still incorporate date nights into your lives! At the start of 2022, Juan and I had a conversation about how we could prioritize our relationship a little bit better, and we agreed to do date night once a month. We did movie nights over FaceTime, played games on the Amazon Alexa, and sometimes watched TV shows. Other times, we just talked over dinner. It didn’t really matter what the date was, as long as we had one. And we didn’t miss a single month!
• Keep an open mind. I remember telling Juan a long time ago that if anyone was going to relocate, it would be him. Why? Because at the time I couldn’t imagine ever leaving my hometown. I also remember his response: “Okay, but with all due respect, you haven’t really seen Houston yet.” He was right. And I did visit (several times) and I loved it. Now I’ve decided I was wrong to want to stay in my hometown. Living in the same place my whole life doesn’t appeal to me the way it used to. Bottom line: If you enter a long-distance relationship, as scary as it may be to realize this, the end goal is that someone needs to eventually relocate. And that might be you.
• This brings me to my last point: I decided to move because I want to move, not just because he lives there. It took me a long time to make the definitive decision to relocate., I wanted to make sure that I would actually like where I lived, and I wasn’t moving my entire life for one person. So, my one-week visits to Houston turned into two weeks, and then a month-long visit in April 2022, just to be sure. And Juan was very patient with me while I processed everything, because he knows it’s a big step.

It’s been quite the journey, but I’m so proud of what we’ve learned and will continue to learn as we embark on this next chapter.

Welcome to 2023: the year of new beginnings!

Inaccessible Hospitality: “What An Incredible Conference…That I Had To Leave Early”

by Ben Trockman

There I was, lying on the pullout couch less than 2 feet above the floor, where my mother and my friend, Kathy, were strenuously bending over to pull up my pants, put on my shirt, preparing me for PRWeek.

My mom is a trooper. At 62 years old, she’s made countless trips out of town with me – for work, physical therapy, and the occasional vacation – and she’s always been my “number one helper.” But, lifting and rolling my 225-pound body is more than a one mama job. We are lucky to have Kathy.

There I am, lying on a pullout couch and in the Hoyer lift

Getting in and out of bed, or in this case a pullout couch, could be easier. Unfortunately, all the hotels in Chicago we contacted have beds on “platforms,” meaning there is no space between the bottom of the bed and the floor. Why is that important? Well, there is this piece of equipment – a Hoyer lift – that can assist my helpers getting me in and out of bed. Quite frankly, it’s the only way I get out of bed.

Because we couldn’t find a hotel that simply just had space underneath their beds, where the legs of the Hoyer lift could slide under – lifting and dropping me above the bed – I was stuck on the pullout couch.

And, as I mentioned, the pullout couch is literally only 2 feet above the ground. Not. Easy.

My mom was already fighting a strained back, this inconvenience certainly didn’t help – our four-night trip to Chicago, which included two days of a PRWeek conference, a night out with my coworkers, capped off by my first trip to an improv comedy show. It was going to be a great trip!

But, I had to leave early. It was just too much.

I have a great deal of empathy for my caregivers. Knowing that my mom and Kathy were straining so hard literally just to roll me over to get me ready for the conference, we didn’t have the energy to continue for any time after the conference. No dinner with my coworkers. No comedy show.

It was a great conference. I believe the Easterseals + Change for Balance duo gave one of the better presentations, and I made a number of new friends, but the experience was overshadowed by the inaccessibility of the hotel, and the fact that I had to skip time with my colleagues to go home.

Look, I’m one of the lucky ones, and I’m well aware. I have a good paying job, which allows me to afford bringing Kathy along. I have a supportive mom, who will travel with me when I need help. But, even this crew of experienced travelers and healthcare workers couldn’t take it any longer – we headed home.

Even my mother, one of the toughest and “let’s get this done go-getters” made a comment: “It’s no wonder many people with disabilities choose not to travel. This is really tough.”

And that is the reality. Traveling is really tough. Hotels don’t design with full accessibility in mind and airlines are not accessible for people in wheelchairs. Thousands of people with disabilities choose not to risk the travel, whether for work or for vacation, and stay-at-home where it’s safe, where it’s accessible.

And that’s not right. That’s not fair. It’s not accessible. But it’s the reality.

So, what will we do? Do we stay quiet, stay-at-home, and on the occasional burst of courage take a work or personal trip?

I don’t think so. Let’s get loud. Let’s rally for more accessible hotels and airlines. Let’s rally for accessibility.

I’ll keep on sharing my stories and I’ll keep being “loud.” I hope you’ll keep following.

The Federal Website for the Americans with Disabilities Act Got an Upgrade

by Beth Finke

So much has happened during this holiday season that you may have missed this bit of good news — the U.S. Department of Justice announced it has launched a new and improved version of the Americans with Disabilities Act website.

I just gave the new ada.gov site a look –okay, a listen! –and the updated version of the website is really easy to get through and understand: it’s written in plain language, the navigation tools are easy to use, and the speech software on my talking computer read it all beautifully. The new site was designed to work well with mobile devices and features links that answer questions about everything from service animals to accessible polling places.

Check it out: visit ada.gov or call the Justice Department’s toll-free ADA information line at 1-800-514-0301 (voice) or 1-833-610-1264 (TDD).

You Might Find Something Accessible to Be Thankful for Within this List

by Alicia Krage

This is my favorite time of year. I love reflecting on the year and recognizing what I’m thankful for. And then, once Thanksgiving is over, the days start leading up to New Year’s Eve, which symbolizes the closing of a chapter and the beginning of a new one. For me, a new year feels like a clean slate and a fresh start, an opportunity to look at it from a brand-new lens.

I started 2022 feeling cautiously optimistic. I wrote a post like this before last year, focusing on the pandemic. It was very therapeutic to write it all down — to think to myself, “Okay, it was a rough year, but I’m going to sit here and I’m going to find those silver linings.”

This year feels like a breath of fresh air compared to the last two. It wasn’t perfect — no year ever is — but sitting down and finding its silver linings, expressing what I’m thankful for, comes much, much easier in 2022. So here is my reflection in all its glory!

1. I’m thankful for my friendships. I wrote a post about this recently but truly, I can’t stress this enough. The first thing that comes to mind when I think of this year are my friends, especially the virtual ones. My friends are spread far and wide, and this year I strengthened so many connections and found routines in the day-to-day that really helped with my mental health. I had monthly movie nights with friends. I had virtual coffee dates on Saturday mornings. I had SharePlay sessions with a friend every time an album came out by an artist that we were both crazy for. These small, seemingly insignificant moments got me through some really hard times, simply because they were things that I was able to look forward to.
2. I’ve grown much more confident in my travel abilities. It’s been six months since my MetroLift experience to the airport and sometimes I still catch myself thinking about it. A year ago, there’s no way I would’ve felt confident enough to try that. I am an anxious traveler, and a year ago, I would’ve let that anxiety get the better of me and insist that we come up with a travel plan that does not involve relying on para-transit, maybe asking a friend to drive me instead. But now? I trusted that Juan knew the system, and I trusted myself that I was independent enough and courageous enough to try something new. And so I did it, and it went well, and I felt liberated enough to write about it.
3. I stayed in Houston for a month and it was a success! Juan and I have been in a long-distance relationship for so long that we knew that one of us would eventually need to relocate. I’d already fallen in love with the Houston area, but I wanted to make sure he and I could live under the same roof before making the big decision. During that month-long visit we had a lot of open and honest conversations about our relationship, cohabitation, and our expectations. And I did a lot of networking, too. I checked out the transportation system, the way strangers treated me as a person with a disability, and other things like that gave me a glimpse of what my life in Houston might be like. And I loved that life.
4. I’ve grown grateful to people who take the time to provide equal opportunities for blind and visually-impaired individuals, such as the creators of audiovault.net. This site provides free TV shows and movies guaranteed to be audio described. I prefer this over going to movie theaters — I’ve had far too many bad experiences at movie theaters (sometimes giving us the wrong audio description device, other times giving us a device that didn’t work and needed to be fixed). I’ve watched so, so many more movies this past year knowing I can count on audiovault to provide us with access to accessible content.
5. I’m thankful for my family’s efforts to include me. Example: during season 41 of the TV show Survivor, CBS started providing audio description. That means that every week now when I watch survivor with my parents, my mom turns on the audio description. That way, she no longer has to describe and can focus a bit more on the show, and I know precisely what’s going on in the show without needing extra help from family members.
6. Thanks in large part to the YouTube channel “Yoga with Adriene,” I now do yoga every day. I occasionally turn to Sara Beth Yoga. Both of these channels do a great job at describing yoga poses and, if you aren’t familiar with the practice, have beginner videos as well. Therapists have recommended yoga to me for anxiety, and ever since I started doing yoga every day with my mom, it has become part of my day and has done wonders for my mental health.
7. Lastly, I discovered a good (and very accessible) journaling app called Day One. I wanted to get back into journaling. This app allows me to journal whenever and wherever I am, and I love how it feels to take time to write down my feelings.

Gratitude is something I constantly work on. On bad days, I could always have the mindset that the entire day was awful, and “at least there’s tomorrow.” I’m learning now that there’s always something to be thankful for, even if it takes some time. I think that’s something we should all strive for.

I hope you all have a happy Thanksgiving, enjoy the rest of 2022, and have a hopeful, positive opening to 2023. Happy holidays!

It’s Not Political, It’s Access: The Disability Community Supports Easier Voting Access

by Ben Trockman

While selfishly I’ve always thought people with disabilities – the community of which I identify – were more “thoughtful,” specifically in our opinion of access, now I can proclaim our thoughtfulness as fact!

As a Project Manager for Change for Balance, a boutique strategic communications company, and as a self-proclaimed “connector,” I brought together our client, Easterseals, with my friends at AARP with the idea of commissioning a voter survey among our two shared constituencies – people with disabilities and older Americans aged 50+.

And guess what? We did it! You can check out the full results of the Easterseals and AARP survey here.

But, if you’ll allow me to get straight to the results this “connector” found interesting, stick with me.

With strong bipartisan support – I just knew this would be true – people with disabilities aged 50+ support expanding voting access, including voting by mail, voting absentee, and ballot drop boxes.

While much of the media pits the major parties at odds on many issues, fundamental access to voting is a united issue for people with disabilities 50 and older. For a very diverse and intersectional population, that’s nice. Simply put, it’s not political – it’s all about access!

Tony Coelho, the esteemed former United States Congressman and primary sponsor of the Americans with Disabilities Act, puts it perfectly “Voting access is not politically motivated as it is supported by Democrats and Republicans alike. In that regard it’s like passing of the Americans with Disabilities Act.”

Another interesting result – and this applies mostly to in-person voting – is when given a list of multiple accommodation options, 43% of respondents say they utilize an accommodation when voting.

I’m not good with math, but 43% of what is expected to be 30 million people with disabilities 50+ voting in the midterm election is a lot!  Those who require just a little extra help will cast their ballot.

While this survey reveals many other important issues to the disability and older American groups, including inflation and other pocketbook issues, a resounding number of people just want access.

Unfortunately, as discovered in previous conversations with my friends at Rutgers University, it’s likely there are a number of people with disabilities who don’t participate in the elections because of accessibility barriers. “If people with disabilities voted at the same rate as everyone else, there would be 1.75 million more voters,” said Lisa Schur, professor, and co-director of the Rutgers Program for Disability Research.

We know it, Rutgers reinforces it – at the end of the day, the disability community wants greater access, from restaurants to airlines to casting our ballots. And, when we have it, we damn sure will participate!

Two Members of Congress are Putting a Spotlight on Accessibility

by Beth Finke

Here’s why it’s cool to have a Senator who uses a wheelchair to get around: she’s an accessibility expert! Tammy Duckworth, our Senator here in Illinois, served in Iraq and lost both legs when a rocket-propelled grenade struck the helicopter she was co-piloting in 2004. After she won the 2017 election for Senator of the State of Illinois, an article in the Chicago Tribune pointed out that running a Senate campaign involves lots of travel and complicated logistics. From the article:

Duckworth said she and her staff have a pre-event checklist to make sure the site is up to their standards — and that means making sure even the bathrooms are wheelchair accessible.

“I don’t go to any place that isn’t accessible even though I have artificial legs that I can walk in; it’s on principle,” she said. “If someone in a wheelchair can’t get in it, I’m not going to do an event there because just because I can get in there doesn’t mean somebody else can.”

The article said that during her campaign Duckworth often heard from voters who question her ability to serve. A question about using a wheelchair in public during the campaign came up when she first ran for Congress. “I’m not ashamed I’m in a wheelchair. I earned this wheelchair,” she said. “I’ve always insisted it’s not something that we hide.”

A seasoned member of Congress now, Senator Duckworth joined Representative Sarbanes of Maryland last month to introduce the Websites and Software Applications Accessibility Act (S. 4998 , H.R. 9021)) in both houses of Congress. The bill will require employers, state and local governments, and private businesses to make their websites and applications accessible.

Much has been made about how people with disabilities benefitted from digital access during the COVID pandemic, but casual conversations I’ve had with people with visual impairments tell me how frustrated they’ve been with technology, the high number of web sites that are not easy to use if relying on speech software and the hours they’ve wasted trying to make it work.

I am blind, and my husband Mike is sighted. During the pandemic Mike has had to take over much of the on-line ordering we do, the forms we are asked to fill out on line, and the online streaming we do. I get a lot of messages in my in box about plays and concerts and lectures that are available on line free of charge, but when I give that a try, the links and buttons are not accessible – frustrating!

If passed, this new legislation will make it clear that the Americans with Disabilities Act applies to websites and applications. I already know that my Senator will be voting in favor of the bill — she’s the one who introduced it to the Senate! Now it’s time for me to take action and find out who my House member is and contact them. You can do the same by linking to the official U.S. House of Representatives web site.

What I’ve Learned from Working Alongside My Colleagues with Disabilities

by Team Easterseals

This blog was also published by the U.S. Chamber of Commerce.

Written by Roddy Tabatabai.

As co-founder and partner at Change for Balance, a full-service strategic communications and production agency on a life-long journey to change this world for the better, it has always been my goal to foster a diverse and inclusive work environment.

My passion for building equity and allyship across our communities is a personal one. While non-disabled, I am an ally and advocate, and I am a person of color as my parents emigrated from Iran years ago. I understand the extreme value of what an underrepresented perspective can bring to the table and how critical it is to create workplaces where everyone feels a sense of belonging. Plus, in my work as a filmmaker, I’ve been privileged to travel the world to showcase stories that capture people’s hearts and minds – from climate action to animal welfare, human rights and yes, disability inclusion.

When building our workgroup at Change for Balance, we asked ourselves, what community is not properly represented in the workforce? Who is not getting a seat at the table? Who’s missing? After learning that the largest minority group in the United States are the 61+ million Americans living with disabilities, I was shocked to learn that the employment rate for people with disabilities was so extremely low. Thus, our company took on its next mission – HIRE MORE PEOPLE WITH DISABILITIES! And we did!

Straight out of the gate, the first thing I learned working alongside my colleagues with disabilities is that they are extremely talented problem-solvers with valuable perspectives. People with disabilities are constantly seeking out ways to perform tasks which others take for granted, and that outside-the-box style of thinking is essential to growing, improving performance, and elevating our work — companywide!

It is a privilege to work alongside my colleagues with disabilities. The work ethic that comes from the disabled community is unmatched. In addition to enhancing our work at Change for Balance, hiring people with disabilities at our company has also brought my own personal work ethic to new heights as the disabled community encourages me to often think differently, opening my eyes to an entirely different perspective I hadn’t previously encountered.

The pool of talented professionals with disabilities doesn’t stop at Change for Balance – they are everywhere and in all professions. In fact, CFB recently worked with a cast and crew of 70% people with disabilities to produce a nationwide PSA series for Easterseals. We even hired a stylist with a disability!

We realize disability inclusion doesn’t stop at our doors; we can collaborate, hire, and contract with talented professionals with disabilities from across the United States and beyond. The practice of including people in front of and behind the camera will be a priority of CFB now, and in the future, whether we are working on Easterseals content or elsewhere!

My advice to any business or work group looking to take their company to new heights:  hire more people with disabilities! They will get the job done.

Working for Companies Who Prioritize Disability Inclusion Has Made All the Difference in My Career

by Ben Trockman

This blog was also published by the U.S. Chamber of Commerce.

Having an employer that believes in you – the whole you – is incredibly important for success.

When I suffered a spinal cord injury 15 years ago, I had a tremendous lack of confidence, a trait I know I share with many people with and without disabilities. I didn’t know it at the time, but after graduating college a few years after sustaining my disability, ready to enter the work world for the first time, I needed an additional support system. I needed someone to believe in me at the same time I was trying to believe in myself. What I didn’t know is that support system would be my employer.

In my “short” professional career of nine years, I’ve worked for two tremendous companies who have prioritized disability inclusion, and, in my opinion, it’s made a world of difference – not only just for me, but for all employees. When companies like Change for Balance prioritize inclusion and culture, the “trickle-down effect” is real. Everyone feels included, and deeper and more understanding friendships are formed.

Our partners at Change for Balance may not take all the credit for this, but by being inclusion-minded in our recruitment approach, the composition of our team, and even being thoughtful and strategic to ensure accessibility as we plan meetings and travels, our company is more compassionate, allowing each of us to become the most confident and strongest versions of ourselves.

As an employee, if you are “hitching your wagon” to an employer, I suggest other potential employees seek out a company like Change for Balance, a company who cares about culture and inclusion. No doubt you’ll have a more thoughtful company, but an even more successful career.

The same can be true of many of our clients who have prioritized hiring people with disabilities as part of their DEI&A practices.  Among them is Easterseals where Erin Hawley, a talented and accomplished influencer in the disability community, is on the national marketing team as its organization’s Communications and Digital Content Producer.  She brings an important and authentic perspective to initiatives on which Easterseals is focused in their mission to advance full equity, inclusion, and access to people with disabilities.