Why We Need to Teach About Disability in Schools

Back to school with Easterseals. Photos of disabled children in school, with friends and with teachers.

by Rachel Handler

When I work as a disability-rights advocate and begin my talks on disability inclusion, I always start with a personal story about my time in the hospital. At twenty-four years old, I had just graduated from Westminster Choir College with a musical theatre degree and could NOT wait to start auditioning for Broadway. Since I was six years old, my dream was to perform in Broadway musicals on a big Broadway stage. My parents spent so much money on dance classes, acting
lessons, and voice training. Once I turned that tassel on my cap, I was ready to make them proud.

Rachel wearing a white blazer, and skirt, showing off her sparkly gold prosthetic leg and smilingBut before I had the chance to find an agent and book a Broadway show, my dreams came crashing to a halt. A car accident less than two short years after graduation permanently altered my body, thrusting me quite unexpectedly into the disability community. As I was lying in the hospital bed, fluttering in and out of consciousness, I had no idea what my life would look like as an amputee. I had never even seen a prosthetic leg. I had never really thought about disability,
disability representation, or the lack thereof, until it directly affected me.

Now, I proudly flaunt my leg as I speak at schools about diversity, equity, and inclusion. How I wish my school didn’t shun students with disabilities into separate classrooms. How I wish I’d seen disability representation on my screen and in my favorite theatrical shows. How I wish films like Crip Camp were required viewing in all schools and educational platforms. How I wish things had been different 10 years ago when I was lying in that hospital bed, and how I wish it was even more different for kids today.

Disability inclusion and awareness has progressed tremendously over the past few years in educational settings, but there is still so, so, so much more work to be done. If I were an amputee during my high school years over a decade ago, I do not think I would have considered a career as a musical theatre artist to be a viable option. Just ten years ago, there was no Ali Stroker, and there weren’t disabled bodies in commercials, or good, authentic disability stories on my favorite TV shows. But if I were a high schooler right now with a prosthetic leg, I would absolutely go for it — study musical theatre and chase those Broadway dreams! That is progress, that is the power of diverse representation. However, by choosing to have a career as a disabled artist, I also know that my auditions and opportunities will still be far more limited than my nondisabled peers.

When I speak at schools about resilience and overcoming challenges or finding opportunity in challenges, the students quickly want to know my leg story. I openly share the details of that day, while reminding them that every person with a disability is different and some may not want to talk about how they became disabled. For a lot of us, that question could be asking us to talk about the hardest day of our lives. But once the students hear the leg story, so many new, more thoughtful questions arise. One of my favorite questions from a 1st grader was, “what was the hardest part about losing your leg?” What a doozy! And what a gift to receive such a layered question. Children are so thoughtful and curious. When given a bit of knowledge about equity, diversity, and inclusion, their perspectives often shift and they instinctually embrace our unique differences as humans.

The only time I ever thought about disability in school was when two boys with Down syndrome started swaying back and forth in their chairs in the auditorium during study hall while everyone else was quiet. When I look back on my schooling, especially my high school experience, I am furious that disability inclusion and disability history was nonexistent. It wasn’t even an afterthought, it just didn’t seem to exist. Even in college, my campus was completely inaccessible. In all of my seventeen years in school, I never had the chance to experience a thoughtful presentation or discussion of disability. To be fair, I don’t think there was much attention paid to serving awareness and advocacy for any underrepresented minorities at my schools. Which is also a complete travesty.

Headshot of Rachel, long brown hair and looking at the cameraIt brings me immense joy to be invited to speak to so many schools and colleges throughout the year about disability awareness and inclusion. I feel excited to be part of the disability pride movement and inspire our youth to keep the progress going. One fourth grader mentioned that she was sick of so many talks about anxiety and depression, and appreciated me speaking about other types of visible and invisible disabilities. I couldn’t help but smile at her complaint; what an amazing problem to have — too much information and discussion on mental health! I think the college students I speak to could have used those discussions when they were in middle and high school. Often, college students are so busy and overwhelmed that they only come to hear me speak about disability awareness when it’s part of a class or for extra credit. Some students may also just not care — this is probably because, like me before my accident, disability isn’t even on their radar.

Up until the 1970s, there were Ugly Laws in America that aimed to keep poor people with disabilities hidden away. Those laws don’t exist anymore, but in a lot of ways, that mentality persists. Especially in schools. Isabel Mavrides-Calderon recently asked disabled students to share their experiences with emergency drills in the classroom. I will end with some of their horrifying responses:

“I am a deaf college student. I can’t hear alarms. I have no way of knowing if there is a fire while I am in my dorm alone. At the beginning of the year, I asked my college to have someone designated to check in on me if there was a fire. They told me this wasn’t needed because my friends could just do it. During a real fire, everyone evacuated and no one checked on me in my dorm. I don’t blame my friends; it’s an emergency situation and they aren’t trained for this. I wish the school would listen to my needs.”

“I was ten when my school had our first active shooter drill. Students were instructed to get into the closet. I’m in a power wheelchair, so I was left out, alone. Teachers and classmates told me it wasn’t a big deal because it wasn’t real. But then, it was real. We had a threat of an active shooter at my school when I was thirteen. Once again, everyone got in the closet and I was left out, terrified. Luckily, it was a false alarm. But it showed me how dispensable my life was to
others and that they had no real plan for my safety. I still don’t feel safe going to school.”

About the author: Rachel Handler is an actor and filmmaker based in NYC. She won the AT&T Underrepresented Filmmaker Award for her short, “Committed” and the Sundance Co//ab Monthly Challenge for her script, “The A Doesn’t Stand for Accessible.” Since joining the disabled community, she’s found a passion for writing and producing, and advocating for inclusion in every project she creates. Her writing credits include the award-winning short films, “HOW MUCH AM I WORTH?” “Andy & Kaliope,” and “Authentically Me,” which won the Reelabilities 27 Second Film Competition and screened in taxi cabs throughout NYC. Handler’s films have screened at Slamdance, Hollyshorts, Bentonville, Heartland, Newport Beach and more. Handler’s TV acting credits include “Law & Order: SVU,” “New Amsterdam,” “Interview with the Vampire” and “NCIS: New Orleans.” She just finished performing Off-Broadway in “The Lucky Star,” and other favorite stage credits are Marian in “The Music Man,” Lady Anne in “Richard III” and Maria in “The Sound of Music.”

 

Because I Am Disabled

Celebrating Disability Pride Month. Graphic of individuals with different disabilities and assistive devicesby Rebecca Twitchell

Sometimes the worst thing about having a disability is that people meet it before they meet you. Ad in a newspaper with an image of someone with a prosthetic hand shaking another hand

Easterseals ad from 1990.

When I was young, I saved this Easterseals ad [shown left] from a magazine, and I have kept it ever since. It sums up exactly how I felt when I was a child and how I feel now. I have actually never considered my hand a disability because I have not let having only two fingers on my hand stand in the way of doing something I really wanted to do … but it has definitely come with its share of insecurities. 

Since I was young, I hid my hand because I have always wanted people to meet me, before it. It was easier to feel liked right away than feeling like I was different, pitied, made fun of, or judged. For most of my life, I felt ugly. And the self-deprecation was very real. I put myself down every single day. While I was sad when the kids teased me, sometimes I didn’t think they were wrong for doing it. 

As I grew older, my insecurities started to become a major obstacle. I was consumed with anxiety that someone would see my hand. It was a 24/7 worry. I wore baggy, long sleeved shirts and sweatshirts all the time, even at the beach, on the volleyball court and while bartending in college. I was good at hiding it. Awesome at it, in fact. When I WOULD let people know of my secret, they would always respond with “I had no idea! And who cares?!” I understood the sentiment. But I cared. And I always will. 

I believed that no one would ever fall in love with me. That I would be on my own. Why would anyone willingly date someone who looked like me?  

Hiding my hand eventually caught up to me in my profession as well, and held me back from the person I did not even know I could be. I would stay quiet at meetings. I never used my voice because I didn’t want people to look at me. I would never volunteer to present in front of a group. I would even position my desk/computer at an angle so that I would not be surprised by anyone coming into my office — because they might see it.    

And yet, when I reflected back to how I actually lived my life over all those years, despite hiding my hand all the time, I began to realize that I never actually let it stop me from doing the things that I really wanted to do.  From volleyball to bartending, I started to see themes of independence, strength and overcoming obstacles in the way of my perceived impossible. I started to shift my way of thinking about my hand to one of more positivity. And that shift allowed my mind to become flooded with very different thoughts, ideas, and opportunities for personal growth. Because I Am Disabled

It wasn’t until I realized and embraced the fact that I actually had a gift — something unique that not everyone had —  and a story to share to support people with their own insecurities that I start to unlock my true self. I transitioned from a place of hiding to a place of sharing. I began using my voice — a voice which was actually being welcomed by those in the room.  

People were resonating with my message. Whether they had a disability or not, people felt heard. It was refreshing to them to know that they were not alone in what they were going through and what they were feeling. That there are others out there who are stuck in a rut of insecurity.   

And these were professionals. CEOs. Presidents. Corporate teams.  

It was another one of those moments when I was overcoming an obstacle in the way of moving forward personally, and more validation of the themes I saw in how I was living my life. It was a risk to lead with vulnerability, especially 18 years ago when it was not deemed professional to share personal stories, but I started to realize … this is what I am supposed to be doing.  

We are people before we are professionals. There is no way around that.  

I became more and more fierce with acceptance and nonjudgement with every group I facilitated and every individual I met. I intentionally worked on my listening skills. On listening to understand. On being present. On not working on a solution in my head during a discussion, but rather allowing my curiosity and care lead me with a follow up question so I could understand even more. 

Rebecca smiling on leaning on a sign that says HOPE

Rebecca Twitchell, Founder & President of half full, LLC.

Today, we receive daily calls and emails from leaders and teams trying to figure out their workplace culture as they navigate what it’s like being back together after COVID restrictions. It is more important than ever for leaders to create an environment where employees feel heard, valued and respected. 

Every single one of us has something going on. And we will never truly understand what someone is going through. But we can begin with acceptance. With not judging. With listening to understand. With celebrating what makes someone unique and not comparing.  

I am incredibly proud of the career and business I have grown. And if given the chance, I would never change how I look. I am here for a reason. I have Symbrachydactyly Syndrome for a reason. I am a facilitator who helps individuals and teams move forward through their values, their culture and by being the best they can be as individuals and as a team. I am a reminder about acceptance of one another.  

Because I Am disabled, I am in love with my life.  (And my husband – I guess someone could fall in love with me after all!) 

About the author: 

Passionate about helping teams and individuals move forward, Rebecca Twitchell aspires to live each day as optimistically and realistically as possible. Her story is the backbone behind why half full, llc exists. Go ahead and shake her hand … and ask for the left one.  

A graduate of the Maxwell School of Citizenship at Syracuse University, Twitchell co-founded half full, llc in 2005 – a unique “do well, do good” business which provides custom team building, retreats, and workplace culture-driven experiences to teams and individuals looking to move forward with intention. “half” is about being a for profit business and the “full” is about giving back.  

After acquiring half full, llc from her partners in 2009, Twitchell enhanced the mission of the company to strengthen its commitment to corporate social responsibility. half full, llc offers personal and professional development retreats to teenagers in the Greater Providence, RI area at no cost.  

She and her team are known for their energetic and engaging facilitation style, problem-solving techniques, and keen ability to adapt and plow through any issues that may affect any clients locally, throughout the U.S., and globally (Africa being a favorite). Best for RI award recipient for its do well, do good business model, winner of the Small Business Association’s 2020 Microenterprise of the Year in RI and the entire Northeast, a graduate of the Goldman Sachs 10,000 Small Businesses program and the PI II Leadership Rhode Island class, she attributes these accomplishments to her team’s dedication to the vision, mission, and values of half full, llc — and her own personal commitment to always be listening and learning. 

 

My Disability Pride: Music, Songwriting, Advocacy

Celebrating Disability Pride Month. Graphic of individuals with different disabilities and assistive devicesby: Jennifer Msumba

The “dis” in disability implies that someone is less able to do things. And while that might be true for some aspects of my life, I have realized that, in my case, autism has provided me with more abilities in many areas.

As a kid, I was diagnosed with challenges that go along with autism, such as sensory processing disorder and obsessive compulsive disorder. These challenges were very hard for me to deal with as a child. I struggled with what I called “getting stuck” on things and would spend hours repeating words or actions in order to soothe the urges inside my mind. I also was extra sensitive to my environment. Whether that be loud noises, crowds, or busy visual stimulation, I took it all in — yet had nowhere to put it. I would eventually burst into meltdowns of epic proportions, leaving my family, teachers, and even doctors perplexed at my behavior. I did not understand myself yet, and I could not verbalize my pain.

A young Jen Msumba, wearing a red a blue jacked and a baseball cap

Jen as a child.

But whenever I heard music, my eyes would dance along to it, and my breathing would keep the beat. I was entranced. I could copy songs I heard exactly on the piano. I was extremely sensitive to others as well. My empathy toward animals and people in distress caused me to feel what they were feeling. I would take on their emotions, especially their distress, and feel it a hundred times stronger in my mind and body. This raised my anxiety, and I did not know how to deal with such a gift. I only felt the burden.

I spent years inside what I called glass — a thick, syrupy layer between me and the world. I went through depression, and I thought things were never going to get better. But there was a small spark inside me that would not give up. I would later realize this was the light I was given to shine in this world.

I spent years in sometimes abusive institutions, group homes, and “schools.” I was eventually put to work in a sub-minimum wage adult workshop. I bundled popsicle sticks into sets of twelve and put a rubber band around each pack for a national food company. I got paid a penny a bundle, which was combined with everyone else’s paycheck. So no matter how many sticks I bundled, I was paid the same as the person next to me sleeping on their desk. Yeah, not very motivating.

Little did these doctors and staff members know, but I actually have a genius IQ. My mind was always busy with ideas, and I knew deep down inside that I was capable of so much more. That all of us in that workshop were capable of more. But they chose not to see it or have the patience to help us cultivate our skills.

Fast forward to today. I have been living in a much more independent situation where I am allowed access to my musical instruments and technology. Once I got unfettered access to the internet, I blossomed. I started posting piano videos and watching other people’s video tutorials. I realized I could learn to do anything I wanted to. My thirsty mind soaked it all in. My passion for music was re-ignited! I slowly acquired recording equipment, software, and knowledge. I began writing songs, and in these songs, I poured out my stories and all of those emotions and observations that my sensory-sensitive mind had taken in over the years. I joined songwriting groups online and was told time and time again that I had a real lyrical gift. A different and bright future shined in my eyes!

Jen at a convention with a name tag, wearing a jean jacket and smiling

Jen at a film festival.

Today, I realize that my autism, my disability, has enabled me to view the world in a unique way. And the things I have been through because of autism, although very difficult, have shaped me into the person I am. That little girl with two braids in her hair that hated herself is gone. I love who I am now. I have a blossoming career as a songwriter for film, television, and advertisement. I have acquired representation with a company that pitches my music to these different mediums. I was hired to write the theme song for the Easterseals podcast Everything You Know About Disability is Wrong, which is a huge honor. It was also a challenge … try fitting that title into a song, lol.

For this theme song, I used my knowledge of how it feels to be underestimated and patronized for being disabled. The frustrations. Being called an “inspiration” simply for existing as a disabled person. I harnessed my years of being targeted with that rhetoric, knowing I was not alone.

I have also become a speaker. I speak to young people in high school and college, as well as at companies and disability organizations. I incorporate music as part of my speeches, which I have found really engages the audience and helps us connect. And also, it’s just fun! The positive feedback I receive after speaking lets me know that I am making an impact on disability and how folks with autism are viewed and treated. This, along with the memoir I wrote, Shouting At Leaves, is helping to shape a new narrative around autism and disability, one person at a time. As we all work together in the disability community to bring change, we are helping ourselves, as well as future generations, to be seen as an asset in the workplace and the arts instead of being pushed into the corner, as my lyric in my song
“Atypical” goes:

Invisible
When I was young they diagnosed me atypical
Treated me like I was an imbecile
But I’m showing out now
Making all them sad cats sit back and meow
I take a bow

Don’t put baby in a corner
You can push me back all the way
I’m moving forward
Straightforward

I’m a child of God
I’m truly happy inside this isn’t a façade
Broad strokes
Don’t paint me with
I’m very specific in my craft, wordsmith.

Jen on stage with an acoustic guitar

Jen on stage.

Do I have disability pride? Heck yeah! I would not want to be any other way than who I am. Because of my disability, I am strong. Because of my disability, I am empathetic. Because of my disability, I am successful in a way that looks good to me. Did I have to take the long road? Yes, but I have landed exactly where I am supposed to be.

Jennifer Msumba is an author and award-winning musician on the autism spectrum. She won her way onto the stage of Fenway Park on August 24, 2023, as part of the Doug Flutie Jr. Foundation for Autism STARS of the Spectrum event. Msumba’s newest album, Atypical, illuminates her life story. From Highway 93, a sparse acoustic arrangement about her first psych hospitalization at age 15, to young adult longing for relationships, highlighted in the humorous yet revealing Minus Your Girlfriend, We’d Make A Great Pair. Jennifer has now found herself exceeding even her own expectations, outlined in the folksy anthem Up, which wraps her album in the most uplifting way.

 

Blindness Has Its Benefits: Recognizing a Proud Moment

Celebrating Disability Pride Month. Graphic of individuals with different disabilities and assistive devices

When I was 25 years old, I was diagnosed with an eye disease called retinopathy. That diagnosis led to a long series of doctor visits, laser surgeries, hospitalizations, and last-ditch efforts to save my sight. In the end, nothing worked. A year later, I was totally blind.

July is Disability Pride month. I am not ashamed of being blind, and I can’t think of a single circumstance when I had any trouble just coming out and telling someone, “I am blind.” Blindness has its benefits, actually. You get to walk arm in arm with people a lot, you can go anywhere with your service dog once they’re trained, and rather than judging people by what they look like, you have to judge them by what they say and what they do.

Blindness Has Its Benefits: Recognizing a Proud Moment

Beth and her service dog.

But none of that makes me feel particularly proud to be blind. I didn’t work hard to become blind, and I don’t expect to get any awards for not being able to see.

So ever since Easterseals asked me if I wanted to write about Disability Pride, I’ve been trying to figure out what disability pride actually means. I looked for some books that might explain it all and found I could especially relate to this paragraph of the Disability Pride book that is part of the Understanding Disability series:

Some people view disability as something wrong or bad, which can make people who have disabilities feel bad about themselves. This negativity can also impact the rights of disabled people, like getting access to school or access to voting. It can make nondisabled people treat disabled people unfairly.

Is there any event in my life that left me feeling proud to have a disability? Proud to be blind? I thought and thought about this, and finally something came to me: I could write  about the time when a live theater in Chicago asked me to be a tech consultant for a play there.

Here’s what happened: Early on in my blindness, I got word that the University of Chicago was staging Wait Until Dark at their renowned Court Theater and looking for a tech consultant. The play is about Susy, a woman who is newly blind and married to a man who can see. The cast wanted to learn more about what life for a couple like that is like, and guess what? I am married to a man who can see, and I was newly blind when they were staging this show. I used my talking computer to email the stage manager and let him know I was interested. His response came immediately, asking if I’d be willing to come by at rehearsal show them the ropes. I answered right back with an enthusiastic, “yes!”

I didn’t lose my sight until I was 26 years old, so I’d seen Audrey Hepburn in the film version of Wait Until Dark on TV when I was a kid, and I had found the film absolutely terrifying: it centers on a “cool-as-ice criminal who smooth talks his way into the home of Susy, an unsuspecting blind woman who has no idea she has valuables hidden in her apartment.”

During the first rehearsal, the actors and I just sat in a circle and talked. One actor — he might have been the guy playing the criminal — asked, “If someone was standing in your apartment, not moving and not saying a word, is there some way you would just sense they were there?” Nope.

Another cast member asked, “If a person you’d met before came your way again, but this time disguised his voice, would you know it was him?” Absolutely not, I told them.

Truth is, I’m horrible with voices. Example: passers-by in my neighborhood often call out a friendly ‘Hello, Beth!’ but unless they tell me who they are, I really have no idea who is greeting me. If they disguised their voices, I’d be totally clueless.

“But that’s just me,” I reminded the actors. “I don’t speak for all blind people.” I tried to explain that we all have different skills we use to make our way, and the cast seemed to understand exactly what I meant.

“How do you think the friends you’ve made since you were blind are different than the friends you made when you could see?” This question came from Emjoy Gavino, the actress who’d be playing the lead. After thinking it over a bit, I said, “I think the friends I’ve met since I lost my sight are surprised to find out they actually like me.” The minute that came out of my mouth I worried it probably didn’t make sense. I tried to explain. “People want to meet me so they can think they’re cool, they’re open-minded, you know, they can tell other people that they have a friend who has a disability. And then, if they take the time to get to know me, they’re surprised to find out they like me.” Another cast member phrased it better. “They’re surprised to find out there’s more to you than being blind.” I nodded.

We sat in that circle for almost two hours – they’d ask questions, I’d answer. We’d get off subject, then back on track again. “This is probably a ridiculous question…” they’d start off, then ask some of the most interesting questions I’d been asked since losing my sight.

Then, time was up. They had to get back to work and rehearse.

And that day, dear Easterseals blog readers, marks the first time I came to understand what the words “disability pride” might mean. I felt proud to serve as a tech consultant at a well-regarded Chicago theater, proud to work with so many talented and creative theater-types, proud to be asked so many intelligent and important questions, and proud to be listened to when I answered them.

And I felt especially proud to be included in — and welcomed to — a group of talented people who now knew what it feels like to have others judge you by the way you look without bothering to find out there’s more to you than your disability.

My sighted husband Mike and I  were awarded free tickets for Wait Until Dark’s opening night, and lead actress Emjoy Gavino was surrounded by well-wishers at the toast in the lobby after her performance. Somehow she manage to make her way towards Mike and me before we left.

After uncoiling from our congratulatory hugs, Emjoy said she had a present for me. “I thought of writing you a thank-you note, but I knew you wouldn’t be able to read it by yourself,” she said, pressing a CD into my hand. “Its music Susy would have listened to.”

Recognizing the quizzical look on my face, Emjoy explained. “When I’m playing a role, I like to put songs on my iPod that the character would listen to. It helps me get into the part.” She reasoned Susy would be a jazz fan. You know, Greenwich Village in the 60s. “There’s some Miles Davis, other jazz. Oh, and Joan Baez. Some Bob Dylan tunes, too,” she said. “I copied them from my iPod onto this CD for you.”

Such a beautiful, thoughtful gift. A perfect souvenir. The opportunity I was given to be a part of a live theatre production was that as well: a beautiful, thoughtful gift. And I was proud to receive it!

 

When I Finally Called Myself Disabled

Celebrating Disability Pride Month. Graphic of individuals with different disabilities and assistive devices

By Erin Hawley

It wasn’t until my early college years that I referred to myself as disabled. Growing up, I was one of the only visibly disabled kids at my school, and all my friends were either not disabled or not out about their disabilities. Since I’ve had Muscular Dystrophy my whole life, my own disability was nothing odd to me or a hardship I had to endure; sure, days or even months were difficult at times because of ableism or my own health – but who doesn’t have bad days, and aren’t some people just extremely ignorant? In my mind, I was a nondisabled person with nondisabled friends. 

Erin, using a wheelchair and wearing a polka dot dress, outside smilingI was not in denial. I knew I had Muscular Dystrophy. I knew I was physically different from other people in my small community. But growing up with telethons and being bombarded with depictions of disability that centered pity and wanting to be “normal” was not something I related to at all. To me, disability was pity – and I liked who I was too much to apply that label to myself. I didn’t want to change and knew I didn’t have to. I am forever grateful that my parents instilled in me that I could do and be whatever the heck I wanted, and continually fought for my rights and acceptance when I was too young or unaware to fight on my own. My mom was a beast when it came to sticking up for me – something I didn’t fully realize until I had to stick up for myself. I’ve learned much from my parents about advocacy simply by being their disabled daughter in a society that wants to sequester me from my community – and their refusal to let that happen.   

When I was in high school in the 90s, social media as we know it today was not a thing. We had dial-up internet, AOL, message boards, instant messaging, and e-newsletters. Through my self-education of feminism and anti-racist work (raise your hand if you grew up reading bell hooks), I connected with other like-minded activists, which included other disabled people on message boards. My mind was blown. Here were people like me – they had differences too – and they were … happy. They were in romantic relationships. They were obsessed with books and video games. And, most importantly, they called themselves disabled, without shame.  

Through these new friends, I learned about the disability rights movement. I learned about people like Judy Heumann, a woman with the tenacity and unwavering advocacy I saw in my mom – and eventually myself. I learned that disability is not a bad word, and disability can mean powerful rather than pity. I was no longer confused about my identity and started to claim the descriptor of disabled.  

Well, I didn’t exactly start using “disabled” – I started off with “person with a disability,” as I thought it was important that folks understood I was a person first, who happened to have a disability. It was the “correct” term used by the disability community at the time. What is great about activism, though, is it’s constantly evolving. The terms we use to describe our identities, within and beyond the disability community, change as we learn and engage with each other. Eventually, we started to question why we thought it was important to separate disability from our personhood, as though disability was something shameful or negative. I am proud to be disabled. I am also proud to be a woman, but I don’t say, “I am a person who is a woman,” so why do that with disability? And just because I was using “person with a disability,” that didn’t change whether someone automatically judged me or was ableist toward our community. Of course, these are just my thoughts – disability is not a monolith, and we should respect the terms an individual chooses for themselves.  

Erin with other disabled advocates speaking at the Games For Change Festival in NYC.

Erin with other disabled advocates speaking at the Games For Change Festival in NYC.

We should also respect when a disabled person reclaims slurs to turn them into something powerful. For example, “crip” and “gimp” have been used within our community; while nondisabled folks shouldn’t use those terms in a negative light, it’s powerful when disabled people apply those words to themselves.  

Almost ten years ago, I started a blog called The Geeky Gimp, where I shared tabletop and video game reviews, as well as TV and movie critiques, all under the lens of disability and accessibility. It became extremely successful, and because of it, I found freelance accessibility work for large companies like Microsoft, Xbox, Sony, and Adobe. I was also interviewed for different news outlets and other media. During the height of this work, I noticed how uncomfortable my online moniker would make nondisabled people. “Am I supposed to say this?” and “Isn’t this offensive?” were commonly asked questions when I shared my work. While I understand the sensitivity and appreciate them wanting to be respectful to the community, it was sometimes frustrating to be called out for the words I used to describe myself – as though I didn’t have a right to it. Reclaiming words that have been used against you and your specific disability is part of disability pride, and how disabled people can empower themselves when faced with hatred and segregation every day. Reclaiming words helped me shove the ableism aside as best I could – and get on with my life as best I could, alongside other disabled people and our allies.       

This disability pride month, I am leaning into my disabled origin story, recognizing the reasons disabled people often struggle with their own identities – and may feel uncomfortable with labels. Internalized ableism is prevalent in our communities, and I hope we can make space for them in our disability rights movement. When media about disability is so often negative and full of stereotypes, and society is only shown these negative portrayals which can embolden ableism, it is easy to see how someone who is disabled would internalize these and feel shame for who they are. Everyone is at a different place in acceptance and understanding of disability within themselves, and we should allow them to grow without shunning them. If we come together, through advocacy and community-building, whether in-person or online, we can also educate nondisabled people alongside the work we do. 

No matter where you are, I wish you a Happy Disability Pride Month. 

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.

 

Moving in Together: Accessibility Hacks for Blind Couples

Moving in Together: Accessibility Hacks for Blind Couples

Alicia and Juan

We are halfway through 2023. What a busy year it’s been! So busy that I’ve only had the time to write one post this year — the one about my plan to relocate from Chicago to Houston.

My mom told me then that the unpacking and organizing would be fun. I didn’t believe her at first, but she was right! Once my stress level started going down, it was fun coming up with cool and unique ways to organize. One example? We keep our Keurig K-cups in two bowls that sit right next to each other on the kitchen counter. The regular ones are in one bowl, and the French Vanilla K-cups are in the other. Each bowl has a different texture. One feels smoother than the other, so we can use our sense of touch to keep track of which is which.

I’ve been here a while now, and the transition to sharing an apartment with my boyfriend and the adjustments Juan and I have both made have all gone much smoother than I expected.Some background: by the time I moved from my parents’ to this apartment, Juan had already lived on his own for a while. He was used to having his own space, his own schedule, and quiet time whenever he wanted. But a big part about living with someone is taking the other person into consideration. He doesn’t stay out as late as he did before I moved in because, whenever possible, we like to set aside time for each other at the end of the day.

Another important part of adjusting to living together is finding and making space for the other person, literally. Juan had to move some things to a lower kitchen cabinet because I’m shorter than him and couldn’t reach the coffee mugs where he’d originally placed them. You just find ways to organize things together! In fact, the idea of this post came to me when my family flew down from Chicago to Houston to visit. They were curious how we, as two blind people, share a space together and how certain tasks are handled. The subject also comes up when I’m catching up with old friends over the phone. Not only do they ask about how we’re doing and adjusting, but sometimes they ask more thought-provoking questions like, “what would you say is the biggest adjustment you’ve had to make since moving?”

Juan has his arm around Alicia at a restaurantThe short answer: everything. Everything has been an adjustment, from communication to transportation to just learning about each other. If I tried to explain everything to you here, this would be more like a novel. So instead, I’ll make a list of what I’ve learned so far about living with another blind person!

1) It involves a lot of extra communication. I like to joke that there’s a lot of narration or play-by-play around the apartment. Important things like, “I’m passing on your right with coffee,” and minor things like, “I’ll be in the living room” when migrating from one room to another. That way, we can keep track of where the other person is. If someone enters the living room, we say “hello” or narrate precisely where we’re sitting. If we’ve moved anything like the TV remote or something, we have to say exactly where it is. The question “are you in here?” comes up a lot when we enter a room and don’t know if the other person is there!

2) Signing up for transportation is liberating! The para-transit service here in Houston is called MetroLift, and even though it took almost two months for me to be fully registered, the wait was worth it; I felt a sense of freedom once I had it all set up! I didn’t need to ride with Juan all the time, or wrack up expenses taking Uber to and from places.

3) I learned how handy tactile dots can be! Tactile dots are smooth on one side and sticky on the other, so the sticky side is placed on an item to identify it. The part we’re actually touching feels like a round dot, similar to the dots on the F and J keys on a keyboard but a more 3-D circular shape. My yearly pass for para-transit feels very similar to my MetroLift ID card, so when I got the pass I put it in my pocket to keep it separate from the MetrolLift ID in my wallet. Once home, I put a tactile dot on the ID card so I can tell which is which. We use tactile dots for things around the house, too: on the microwave, on the toaster oven, on the light switch to know which is the kitchen light and which one is outside.

4) We’ve developed a secret language all our own. I can’t translate our language for you (it’s very blindness specific), but I will tell you this much: one term we often use around here is “blind-proofing” the house. That is, making the place safe and accessible for us.

5) As for shopping, Juan primarily orders groceries using Instacart and has them delivered to us. I enjoy being out and about, so I’ll go to the grocery store in person if it’s a smaller order. I create a list using my Amazon Alexa, and I request a shopping assistant once I get to the store. As we purchase an item, I check it off the list.

6) I use the Be My Eyes app a lot more often than I did when I was living with my parents. This app connects blind people to a sighted volunteer via video call, where you can ask questions like the color of your outfit or expiration date on an item. When groceries are delivered and one or both of us can’t identify a certain item by touch, we go to the Be My Eyes app. Very useful!

7) On the days where I feel like we should be adjusted by now, I try to remember that living together could be more of an adjustment for one partner and not as much for the other. We’re both adjusting to sharing a space, but I try to keep in mind that I’m not only the first blind person Juan has ever dated, but the first he’s lived with.8) Collisions happen more than you think. Sometimes, we’re not always good at announcing where we’re at or if we’re passing with something. Other times, it’s just happenstance. Once, I was coming out of our room and walking down the hall towards the living room. Juan hadn’t heard the bedroom door open and was headed down the hall towards the bedroom. So, you guessed it: we literally collided. Collisions like that used to be met with frantic apologies. Now whenever this happens we just laugh, give each other a hug, and proceed with whatever we were previously doing.

9) Lastly, moving in with someone involves a *lot* of memorizing. Remembering where Juan keeps certain things vs. where it was placed at my parents’ house has been my biggest struggle, and I often get frustrated when I can’t remember where something is. I feel like I *should* know by now, but I don’t, and that’s okay. It’s still a new space.

It hasn’t been a very long time under the same roof, but I feel like I’ve already learned so much about moving, living with someone, and how to adjust. And I know I’ll continue to learn more each day. We’re still learning about each other and our daily habits, quirks, routines, and everything in-between. But we’ve worked so hard to get here and be together under the same roof, and I am so happy that this was the year we finally made it happen.

 

One Can Only Dream: Medicaid Limits to Homeownership

by Erin Hawley

Erin at a table reading a bookOne 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.   

Erin driving down her wheelchair ramp

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

Queer, Old and Crippled: One Person’s Life

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. A crowd waving pride flags

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

Queer, Old and Crippled: One Person’s Lifeby 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.

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

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! 

Anna outdoors, wearing a plaid shirt and smiling

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

Queer, Old and Crippled: One Person’s Life

by Liz Johnson.

Liz, with short brownish blonde hair, wearing glasses and smiling at the camera. The photo has an orange and pink retro glow to it

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 feeding their cat in front of a green screen setup.

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).