One Can Only Dream: Medicaid Limits to Homeownership

by Erin Hawley

by Erin Hawley

One day, I would love to have my own home – 2 bedrooms and an office I’d turn into a library. The kitchen can be small, and there doesn’t really need to be a huge backyard since I hate going outside; I’d be fine with a big window to sit by while I read. But at almost 40 years old, I am still living with my parents. While I love my folks and adore my bedroom, my own place would be a dream. In fact, it may have to remain a dream since, as a disabled person, the Medicaid crisis impacts my choices greatly.  

When I was a year old, I was diagnosed with Muscular Dystrophy, a disability that weakens your skeletal muscles greatly over time. At age 3, I got my first wheelchair – and my folks ensured our home was accessible by widening doorways and building a ramp. At 13, after contracting pneumonia, I spent four months in rehab and got a trach. Because I still have the trach, I am reliant on my family and skilled nurses to perform all activities of daily living, such as putting me on the ventilator every night, clearing my airway as needed, dressing me, bathing me, and toileting.  

Since I’ve been disabled my whole life, this is not a big deal to me. My life is pretty normal, as I work full time, have a romantic partner, and spend too much money on books and DoorDash. Owning a home is something I want to add to that list; it’s within my budget, but I am still held back by systems in place that limit my choices.  

New Jersey recently implemented changes to its WorkAbility program, which allows people receiving Medicaid to make over the income limit imposed by it normally (around $1600 per month). I can make much more ($78k/year) and have no limits on assets – meaning I can save money and buy a house without worrying about my benefits. This is incredible, as many states do not have such a program. Disabled people are often forced to choose between having their basic healthcare needs met and being able to afford a home, entertainment, and socialization. Why should we have to decide between getting out of bed in morning and having a job?  

Even as someone who received Medicaid nurses through WorkAbility, and who has a job to sustain them, I am still living in my parent’s home. Why?  

I can’t live on my own because I always need a nurse or family member nearby due to my medical needs. I have the nursing hours to cover waking me up and putting me in bed every day, but I don’t have the amount of nurses needed to cover those shifts. Due to lack of funds going to Medicaid, they are unable to pay skilled nurses enough for home care. When you can make triple working at a hospital, why would you do home care? That means I only have 2 nurses. It’s impossible to find people, and our nursing agency continues to look without luck. In between their shifts, my parents care for me – but they are pushing 70. What happens when they are unable to care for me? I have a romantic partner, and they will be able to do some of the care – but not all of it, due to their own disabilities. The reality for many in my situation is a nursing home, where your freedom is stripped from you.   

In addition to the nursing shortage, it’s also difficult for me to find a home that is accessible for wheelchair users. Sure, I can buy a home, but can I get in the door? Can my wheelchair squeeze down a narrow hallway? Can I pull up to the sink? In my experience, the only homes that meet these needs that I could find are in 55+ communities. I know I’m getting old, but I’m not there yet. And if I were to buy a home and fix it up to make it accessible, that would add significant costs that I may not be able to afford. 

For disabled people who don’t work, whether because of their disability or because their state does not have a program like WorkAbility, homeownership is near impossible due to costs and Medicaid income limits. According to a survey from FreddieMac, 51% of disabled people who want to buy a home said they do not have enough money for a down payment and closing costs. As housing prices continue to rise, everyone is struggling – but the additional burdens we put on the disability community make it even worse. 

Even though everything seems to be working against me and other disabled people wanting to own a home, I believe we can enact changes in systems to make it a possible reality rather than something you can only imagine. We need to advocate and contact our representatives to let them know Medicaid needs funding, desperately. We need to ensure a percentage of new homes being built meet accessibility standards.   

If you think this doesn’t apply to you, remember that anyone can acquire a disability at any time. And even if you never do, everyone benefits from having disabled people living in the community rather than a nursing home.   

Everyone’s futures are uncertain, but for disabled people, the uncertainty and instability of Medicaid leads to greater limitations on our possibilities. It takes away our agency and joy. It means we are ostracized from communities and othered by society. We all deserve freedom and choice. 

That freedom and choice we desperately need may one day be realized – and then I can bask in the glory of my dream personal library.   

Erin Hawley is from Keyport, New Jersey, and works as the Communications and Digital Content Producer for Easterseals National. She is also a content producer for her YouTube channel From Erin’s Library, where she shares her bookish opinions, travels, and family life. Erin runs the Disability Readathon with her friend Anna, which focuses on authentic disability representation in media. She is also a gamer, and has worked with companies like Microsoft, Logitech, Adobe, and Electronic Arts to ensure accessibility and inclusivity is not an afterthought. Erin’s work has been featured in The New York Times, USA Today, HuffPost, and other publications.

Queer, Old and Crippled: One Person’s Life

by Blog Writers

From Beth Finke, a regular contributor for Easterseals:

When I’m not writing posts for the Easterseals blog, I keep busy leading three different memoir-writing classes every week for older adults here in Chicago. 

Writers in those classes tell me that writing a story at home to bring to class each week keeps their brains working. And for me, leading those classes is a pleasure: I get to know each writer very well simply by listening to the stories read out loud in class each week.  

June is Pride Month, so I assigned “Pride” as a prompt for class this week. Bill Gordon, an 86-year-old in one of my classes, came back with a very personal essay about what it’s like to be growing older now as a gay and disabled American. He has generously agreed to let us publish it here on the Easterseals blog. 

Editor’s Note: At Easterseals, we believe in giving disabled and LGBTQ+ people the space to share their stories authentically, with the language of their choosing to describe their identities and experiences. While the author uses “crippled” to describe his disability identity, Easterseals does not use this word to describe disabled people. 

Queer, Old and Crippled: One Person’s Life

By Bill Gordon 

Bill

Being queer is one thing. Being old is another, and being crippled is yet another. I’ll start here by describing my disability. 

Crippled 

I was born with spina bifida but had the mildest form of it there is. Spina Bifida didn’t begin to cripple me until my late fifties, and even then, my limp was barely noticeable. 

But by 65, I was walking with a cane, and from then on it got progressively worse: I went from one cane to two canes, then two canes and a leg brace, then crutches and two leg braces and orthotics. In my eighties now, I use a wheelchair to get around. 

I haven’t always been old or crippled, but I have always, always, been queer. 

Queer 

When I was 3 or 4 years old, a snowstorm closed the highway that ran through our small farming community. My parents invited the young driver of a cattle truck stranded by the storm to stay in our home. 

Everyone thought I was asleep that night, but I saw the man naked when he was bathing in our round, metal tub. The feeling that swept through my 3- or 4-year-old self remains with me to this day. Even though I didn’t have the words to express what I felt, I intuitively understood that I was different and that I had a secret I had to keep. 

With my secret intact, I moved through grammar school and junior high unscathed. Popularity did not elude me. Each year, I was elected to the Student Council. Other students and teachers seemed to like me. What saved me from humiliation and bullying? I was tall, smart, a good student, articulate, pleasant looking, and, thanks to my mother and father’s parenting methods, I grew up kind and thoughtful. At that age, that was enough to get by. 

And yes, a few of my male friends and I “played” around. They understood it to be an innocent exploration, but I did not think of it as simply “what kids did” as part of growing up. In the secret recesses of my being, I was thrilled by our exploring and never let an opportunity pass me by. When I was 13, I discovered the word “homosexual.” I went to the library’s card catalog to look it up, and a “see reference” directed me to the words “mental illness” and “criminal behavior.” I cringed at the thought of being either of those things — mentally ill or a criminal because I was gay. I knew I wasn’t either of them, but this discovery convinced me that my secret needed to be buried even further. 

And things really changed when I started high school. 

The athletes moved to the front of the line, and I wasn’t athletic. Boys like me became the butt of jokes with the words “queer” and “fairy” in them. 

When a bunch of guys called me a “turd” once and told me I was too smart for my own good, I didn’t care. I was just relieved they didn’t call me “queer” or say I was a fairy. No one wanted to be called either one of those words. 

I told myself the way I looked and carried myself would protect me from torment and help keep my secret firmly in place. I always had a girlfriend (a “beard”) in high school, and I went to all the school dances, including those where girls invited the boys. 

On the side, I started an affair with a neighbor boy. Our passion outweighed our fear of getting caught, so it was disappointing when he suddenly decided he didn’t want to do “it” anymore. No surprise, really: in my early teens I had already concluded that a life as a homosexual would be one of furtive sexual encounters, loneliness, and a constant effort to hide one’s true feelings. What a sad way to lurch into adulthood. 

Then came college. Through my college years, I continued to have casual, furtive sex wherever I could find it. And finding it wasn’t difficult. I seemed to have been a “commodity” that lots of people wanted. This was back in the day, long before social media. We all had some form of “gaydar” (rhymes with radar) that helped us recognize others looking for the same thing. Most of us were still in the closet so deep that caution governed our activities. 

Throughout my working life, I remained closeted. Even when I suspected people knew I was gay, I could not — would not — confirm it. A lifetime of hiding who I really was could not be given up easily. 

When I was 50, I met a man 20 years my junior. We connected on several levels — sexually, intellectually, spiritually. We became partners and remained so until his death at 52 years old. We were devoted to each other, but we were both residing deep in closets to protect our professional lives, and, in his case, information from his deeply religious family. We often joked that we moved from separate closets to one of those large walk-ins where we could reside together. 

Getting Older 

As the years pass and I grow older, it has become clear that I have become less and less desirable. The gay community seems to define acceptable attractiveness as young, lean, fit, good looking, and wearing the right clothes and going to the right places. We all age out of that description, and the gay community can be cruel. Bars that catered to older men are often referred to as wrinkle rooms. Men, trying to retain a youthful appearance, often become the victims of ridicule. 

Growing old can be hard, and in the ageist gay community, it can be especially difficult.  Gay men need to be secure about the inevitability of aging, and willing to accept growing old with grace and a sense of humor. I believe I have done that, celebrating each year with gratitude, adjusting to the inevitable dismissive attitude of some younger men, and reveling in the amazing peace and some comfort old age can bring. 

Tall, lean and fit can no longer be used to describe me. So, now what? First of all, I’m still gay. Disability does not alter that fact for any gay person. Being less than what the gay community describes as perfect is burdensome. Each disabled gay person has had to traverse a difficult field of prejudice to enjoy the benefits of a gay life. 

I was old before I became disabled. My gratitude is boundless that my disability, which has been a part of my life for twenty-five years, has progressed slowly, giving me the opportunity to adjust my lifestyle as my mobility decreases. I found room in my protective closet for my crutches and wheelchair. 

Finally, in my mid-seventies (I am now 86 years old), I came out. In a small group of people in a memoir writing class, I said, while reading an essay I had written, that I was gay. Even then, I was nervous with sweaty palms, but, alas, the earth continued to swirl on its axis, and Beth Finke, the teacher of the class, simply called on the next class member to read their essay. We all moved on. 

Tomorrow Will Be Better: On Queer Pride as a Disabled Person

by Blog Writers

by Anna Goldberg.

Pride. The word holds a multitude of meanings: a protest; the month of June; the opposite of shame. It pulses with promise, a single syllable standing in for so much history. It captures our most closely-treasured hopes as queer, disabled people: today will be good. Tomorrow will be better. I matter. I exist.

Anna Goldberg

As a queer, disabled person reflecting on Pride this month, I’m struck by how much Pride resonates with me as a process rather than a discrete event. Maybe it’s because we’ve spent every June since 2020 in a state of COVID emergency, which still curtails many of us from fully participating in public festivities. Maybe it’s because of the infuriating disjuncture between corporations who sponsor parade floats in summer while funding bigots and transphobes’ political campaigns come winter. Maybe it’s because as I get older and read more about queer history, I think of Pride not as the final destination on a linear arc of history, but as something messy, organic, vitally necessary. Maybe it’s because this year is the first time I can say, with my whole chest, today will be good. Tomorrow will be better. I matter. I exist.

It wasn’t always this way. I didn’t always know I was queer, and I didn’t come into my disabled identity until adulthood. Coming out is a process I’ve heard used to describe sharing both these identities — queer and disabled — with yourself and your community. It’s not an all-or-nothing state of being: most people know (or can deduce pretty quickly) I’m queer, but few people know I’m disabled unless I tell them or I’m using a mobility aid that day. Likewise, most people don’t know my gender (nonbinary/genderqueer/genderfluid) or pronouns (she/they) unless I’m wearing a visible marker, like a pronoun button. While no individual fits the entire stereotype of queerness or disability, I would hazard a guess that I’m not the only one who, in comparing myself to the stereotype, has wondered, do I count? Am I queer enough? Disabled enough? Or am I a fraud?

Our human brains like things to be straightforward and easily categorized. It helps us make sense of the world. Pride — in our queer, disabled selves — gives us space to imagine life beyond, outside, across these categories. There’s a saying I’ve heard in both the queer and disabled communities that goes, “if you’re wondering a lot about whether you count as queer or disabled, chances are you probably are.” Or, as I put it to a fellow genderqueer friend when they came to me to share they were questioning their gender, “cis people don’t fret about gender.”

Concepts like queer pride and Crip time let us fashion ourselves, not as exceptions to an ableist, heteronormative and cisnormative environment, but as the beautiful creatures we are. Pride lets us come as we are. Pride situates us not as exceptions or anomalies, but as the interdependent, interconnected beings we are. With so much pressure on us to conform, either to the societal default of whiteness, cis-ness, heteronormative, non-disabled, or to that society’s stereotype of what a disabled person must look like, be, or do, Pride offers us a powerful repudiation of that mandate. 

Both the queer and disabled communities are no strangers to legislative attack, social stigma, and everyday humiliations. Pride happens when we say, no, I’m not what you think I am. It’s not me who doesn’t fit into the wider world. It’s the world which insists on describing me incorrectly, and that needs to change. Pride happens in the hashtags like #DisabledAndCute, #AmbulatoryWheelchairUsersExist, and #BlackTransLivesMatter. Pride occurs where we strike a balance between dismantling the dominant narratives that seek to pigeonhole us, and creating and celebrating the joyful possibilities of queer crip stories and spaces. Pride is a conversation, a dialectic between who we are and the most cherished desires of our hearts. It’s astonishing to me that we celebrate this for one month instead of all year round! 

The world is filled with countless, everyday injustices against queer disabled people, and I see this all too frequently in the way these two communities — queer, disabled — seek to separate from each other, to disavow those of us who are both from full participation in either. Pride is an antidote to that. Pride is disability justice; disability justice is Pride. It’s in the cooperation between the Black Panthers, disability rights organizers, and nondisabled allies during the 504 Sit Ins. It’s ASL interpretation at drag shows. It’s plastic straws and free condoms and ramps without asking. It’s queer-inclusive, accessible sex education in schools so kids like I was don’t have to grow up without basic vocabulary to describe our existence. It’s continuing to fight for marriage equality so that disabled people can marry our partners without losing the healthcare and financial support we need to stay alive and remain in the community. A parade once a year is certainly a fun visual signifier of how far we have come, but Pride invites us to imagine and demand so much more. 

This June, I want us all to remember that Pride is not an endpoint or an achievement. It is not a rainbow product you can buy in a store. It’s frequently loud, messy, and circuitous. It does not care about respectability as much as putting in the work. Pride is the community we find in a world which demands creative solutions from us every day. Pride does not promise us answers, but it does give us a roadmap for survival. Pride encourages us to whisper, to shout, today will be good. Tomorrow will be better. We matter. We exist.

Anna Goldberg (she/they) is a writer, editor, and geek of all trades. She is the cofounder of 6 String Games, a TTRPG micropress which publishes games from the stranger side of storytelling. She has worked with Mage Hand Press, DOTS RPG, and elsewhere making games and game-related content of all sorts. 

When they’re not playing or making games, Anna is an avid cosplayer, tea drinker, and bibliophile. They are the co-founder of the Disability Readathon, a semi-annual event dedicated to celebrating books and media created by disabled authors. They also do disability advocacy and consulting for games, cosplay events, and other geeky endeavors, promoting inclusivity and access for all.

Anna resides in the Pacific Northwest, in a bog witch’s dwelling she shares with her husband and their two dogs. 

Find Anna at @nymeria941 across social media.

Taking Pride In Being Different: Reflecting on Being Non-Binary and Autistic

by Blog Writers

by Liz Johnson.

Liz Johnson. Photo by Rialin José.

I knew I was non-binary before I knew I was autistic. But neither were surprising to me, truthfully.

I am not the first, and I’m certainly not the last, to be at this intersection of identity. 

Research from a 2020 study cites gender-diverse people are three to six times more likely to be autistic than those that are cisgender.

Before I even knew I was trans or autistic, I knew myself to be strange – both because other kids called me that, and because it was one of those lingering suspicions. But I owned that early, befriending fellow playground weirdos and saying “thank you” anytime another child would bestow the word “weird” upon me in an insult. I had an understanding that being a little odd would always feel more comfortable to me than changing parts of myself that I cherished to fit an expectation of normalcy. As I got older, this internal acceptance of difference, though sometimes hard-fought, made it easy to interrogate, accept, and love my non-binary identity. Early on, I understood the expectation of heteronormativity – the societal expectation to be heterosexual as the standard – already having come out as bisexual at thirteen. It was no shock the same normative standard would apply to gender. 

I remember feeling like, as much as I experimented with clothing, I wasn’t getting the gender euphoria I wanted. The absolute joy I got when people saw me as my full self in other facets just wasn’t clicking when it came to my gender. Long curly hair, a girlish nickname, and she/her pronouns just weren’t feeling suited to me – like a sweater I could admire on somebody else but fit me all wrong. Research being a favorite dual purpose coping mechanism/hobby of mine, and human psychology and sexuality being an intersection of special interest, I dove into researching why I felt the way I did about gender. A deep dive through the internet, combing through explanatory breakdowns of queer theory, to expansive lists of gender identity labels, left me to land on simply identifying as the label I felt suited me best – non-binary. I had friends who were having a lot of the same feelings. When I shared this identity with them first at seventeen – asking them to use my new name, use gender neutral pronouns – it was a safe way for me to confirm that being non-binary feels like home to me. I was lucky to have a supportive family as well, being surrounded by a community that supported and affirmed me, I could truly be myself. I think this identity and my relationship to it has grown with time. As I get to know myself better, I live in it more fully. It was the right fit then and it is the right fit now.

Liz behind the scenes of a music video. Photo by Rialin José.

I was diagnosed with Autism Spectrum Disorder just this year, at twenty-six. I got here after similarly winding rabbit holes of research and a steady influx of my community support. I’m still settling into it all, but it definitely made so much of my life make more sense – in a lot of the same ways finding the words for my gender did. But beyond that, understanding how some of the idiosyncrasies of my mind worked was such a relief. I already had a diagnosis of ADHD given at twenty-one, so neurodiversity isn’t a stranger to me. In fact, across my circles of friends, most of my friends were neurodivergent anyway in the same way that a lot of my friends are queer and trans too. We tend to find each other somehow! My autistic friends were intrinsic to helping me understand myself as an autistic person in addition to having ADHD. Again, being a sounding board for my feelings just as the times in my teens when I had been processing my gender. My family showed up again in a new way, some of them asking the same questions about behaviors and feelings they had day-to-day, eagerly awaiting my assessment results. I was happy to be the person that could deliver the news that I was autistic, and start conversations on what that not only looked like for me, but be a support for my loved ones wondering what it looks like for them. 

Access to the information to get the understanding of myself has come from a combined force of my support system, wider community of people who share my identities, and the internet as a whole. Looking back, it was vastly easier to uncover and affirm my gender identity than it was to gain an autism diagnosis. People assigned female at birth have a harder time getting diagnosed. “A fundamental issue with the current diagnostic methods is that the behavioral markers used as criteria are established on pre-existing conceptions of what autistic behaviors look like. These criteria have been developed based on the predominantly white male populations previously identified as autistic” (Hull et al. 2020). Not every person’s experience of autism will look the same. I mask highly, and the way I stim with finger tapping and knee-bouncing, just as an example, can be overlooked as a stimming behavior. I’m learning more about how I can feel at home as an autistic individual, and the autistic community around me is instrumental in that. 

There is an intersection of queerness that aligns with one of the great strengths of neurodiversity. Both communities value questioning normative standards and challenging the societal expectations put on us. The kind of weirdness I’ve always felt for being different than the expectation is not only understood by trans and autistic people alike but, more often than not, celebrated by both. I celebrate it, too. Neurodiversity manifests in many ways as does gender diversity. No one individual’s experience with gender, nor being autistic, will be exactly the same. Existing on the spectrums of both empowers me to be my fullest and truest self, and I’m inspired by all the people who join me at this intersection. 

Liz is a queer & disabled writer, filmmaker, and multimedia artist. They are a Columbia College Chicago graduate and current freelancer with a broad portfolio, and pride themselves on being a jack-of-all-trades (and master of a few).

Behind the Screen: Conversations with a Disability Advocate and Filmmaker

by Lily Newton

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.”  

To keep up with his continuing work, you can follow Alexander on Instagram, @realalexanderfreeman. 

A Trip to DC: Press Briefings, Panel Discussions and Sharing the Room with the President

by Ben Trockman

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.

Autism Diagnosis in Women and Girls

by Beth Finke

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.

But wait! Why am I telling you all this? Better to hear it from the expert! Kate Kahle outlines her thoughts on this discrepancy in her TED Talk, Why Autism is Often Missed in Women and Girls.

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!