Disabled, Trans, and Denied: Experiences with Problems in Medical Care

by Blog Writers

Editor’s Note: This blog contains detailed descriptions of medical trauma and abuse. Please take care when reading.

By Dom Evans

The medical establishment was not designed with disabled people in mind. Especially not those with disabled bodies.

I’ve known this since I was a small child. My first harmful medical experience was at maybe four or five.

When I was two, doctors discovered I was born without a left hip socket. They had to form one, so I was put in various braces until the socket formed about a year later.

Dom as a child and his grandfather.

After the braces came off, I had muscle weakness.. They did not understand why. So, I went through every test possible. It was a painful couple years before they discovered I had Spinal Muscular Atrophy (SMA). My orthopedic surgeon was involved in this surgery and it was after I was recovering where problems first started.

I was four and a half at the time, and had recently had a muscle biopsy on my right leg, which produced a horizontal scar. Inquisitively, I asked my surgeon when I would be able to run and jump, since I couldn’t. I also asked him when my scar would go away.

Callously, he looked at me and said, “Never! You’ll never be normal or run or jump. Get used to it.” He then walked off. I immediately started crying hysterically.

For me, being disabled means going to multiple doctors multiple times throughout the year. 

Especially when I was younger, there were lots of tests, checkups, and general wellness meetings.

Back then, it would depend on the doctor whether I received good care or whether they listened to me or not. I’d find good doctors that actually cared about my health and stick with them for years.

Even worse though was the unexpectedness of an emergency stay where I could never predict what kind of care I would get. That was where I received the bulk of the abuse from the medical establishment when I was younger.

All of that changed when I came out as trans. I was 21, and had no idea what I was in for when it came to dealing with medical professionals as both a wheelchair-using disabled person and a trans person. After coming out as trans, finding medical care became even harder.

Note: I’m also neurologically diverse with ADHD, PTSD, and anxiety. I believe I didn’t receive my ADHD diagnosis until I was 39 due to medical professionals again neglecting very clear signs. They were too focused on my physical disability to notice or care.

My trans medical needs were hampered by my disability. I was experiencing quite a bit of dysphoria, and hormones along with a breast reduction (I was not able to get complete top surgery – it was not available to me) would help to all but obliterate most of my body dysphoria. Unfortunately, it would take me SEVEN years to gain access to hormones due to inaccessibility.

My transition was delayed by almost a decade due to medical ableism.

This was back in the early 2000s, and I lived in a Michigan county where there was not a single doctor that would provide hormone care or access to top surgery. I could go to the closest large city, but it was in a different county and I could not get any accessible transport to take me out of my county. I had to wait until I moved to a different state (we rented a wheelchair accessible van which was ridiculously expensive to rent) where there was a doctor in my county who prescribed me hormones.

What’s even worse is that being trans and disabled has almost gotten me killed more than once. The most egregious instance was when I had my hysterectomy, around 2012. That was such a horrible experience that I’ve been diagnosed with PTSD as a result of what happened at the hospital.

My hysterectomy had to happen. I was having intense bleeding that never stopped. Literally. I would bleed 365 days of the year, 24/7.

My doctors could not find out what was wrong because I could not get on a table to be examined. So, eventually they just put me on birth control. It stopped the bleeding but whenever it was time for my period I would have horrible cramping that left me doubled over in my wheelchair for hours.

When I was on testosterone, it did not help this pain. So I ended up getting my hysterectomy. However, because I could not get on the table to be examined before surgery, they did not know I had an enlarged uterus. When they were taking my uterus out it ripped open at least one of the blood vessels that had been sealed and I was bleeding internally without anybody knowing.

After being released home and a lot of medical gaslighting, it took a month for them to figure out I was slowly bleeding to death internally. After a night where it looked like I had been murdered when I bled all over my bed, I was rushed to the hospital where a nurse demanded I give her my ID. She wanted me to prove I was not a “female” because she was misgendering me.

Here I am, going in and out of consciousness, bleeding out, trying not to die with paramedics begging this nurse to get the doctor and get me a blood transfusion. Instead of doing all that, she “put me in a diaper to stop the flow of blood coming out of me” and told me once I got the ID she would get the doctor.

Luckily, eventually a doctor came in and got me a blood transfusion but for a while I thought I was dying as the blood continued to pour out of me. The transphobia of that nurse still makes me question anytime I feel sweaty, thinking I might’ve started bleeding again and might be dying again. It’s been a decade and it still affects me that deeply.

The truth is, when you are trans and disabled, you have to work even harder to prove you are a human being when you are receiving medical care. You have to prove to the doctors and nurses time and time again that you deserve to receive treatment.

I hope, as pride month continues, medical professionals become more aware of the intersection of disability and gender identity. Trans disabled people deserve to stay alive. We deserve healthcare that helps and affirms us. It’s the least the medical establishment could do for us as human beings.

Dom Evans is the founder of FilmDis, a media monitoring organization that studies and reports on disability representation in the media. He is a Hollywood consultant, television aficionado, and future showrunner. His knowledge and interest on disability extends through media, entertainment, healthcare, gaming and nerdy topics, marriage equality, sex and sexuality, parenting, education, and more. He was also featured in Season 1 of Everything You Know About Disability is Wrong, an Easterseals podcast.

Bridging Employment Gaps for Veterans and Older Americans: An Interview with SCSEP’s Crystal Odom-McKinney

by Blog Writers

Crystal at the 2024 Policy and Partnership Forum. Easterseals Photo by Rohanna Mertens

Crystal Odom-McKinney is the National Director for the Easterseals Senior Community Service Employment Program (SCSEP). SCSEP is the largest federally-funded program for low-income, unemployed adults, ages 55 and older, who seek employment and training assistance as well as civic engagement. 

Through this transitional employment program, Easterseals partners with community-based nonprofit organizations and government agencies to provide participants with training opportunities to update their skills. During time in SCSEP, job seekers work with Easterseals staff to target and achieve personal employment goals. Some SCSEP participants are veterans in need of support.

As a veteran, Crystal knows how hard it can be for veterans to transition from military service back into civilian life. Finding employment can be difficult and stressful, and for disabled veterans, or older veterans, these barriers to employment and reintegration can be even more prominent. Easterseals and its Affiliates work hard to provide much needed-support to veterans during and after this period of transition. Crystal takes pride in providing confidence to veterans as they make this next step in their journey. 

This interview has been edited for clarity. (more…)

Finding Pride at the Intersection of Disabled and Queer

by Blog Writers

By Christina Gann

I have been disabled since birth, both developmentally and physically — the source was a congenital disorder, a hole in my diaphragm, that most likely also led to my neurodivergent brain and my small intestines twisting inside my body. I had emergency surgery to remove all but 11 inches of my small intestines when I was nine years old after an excruciating two years of my resilient mother fighting to convince my doctors that I had a health problem at all. I was invisible to my doctors and so was my illness. 

I spent most of third grade in the hospital after my intestinal resection and when I returned, it was with a new set of hardware — a backpack full of nutritional life support and a Hickman heart catheter. I remember the crushing feeling of having to go to the community pool and having children run up and ask me what was sticking out of my chest. All I wanted was to hide, and I did. I did everything I could to not allow the world to “see” me as disabled or different. 

I came out to my parents as a lesbian, Christmas 2005 sitting at an IHOP after an intoxicated night out with my college friends. I was so terrified I couldn’t even bring myself to face them or call them to break the news gently. I texted my mom, “Hi mom, I need to tell you, I am a lesbian.  If you have any questions, you can call me in the morning.” As funny as it is when I talk about it now, I was riddled with internalized shame of myself, as who I am naturally attracted to was deemed unacceptable and sinful. I grew up in a small town in central Texas where the Bible was the word with no safe space for the queer experience. 

The fear of being rejected by your pack is an instinct that triggers a primal reaction to conform. The moment I sent that text, I remember feeling like a weight had been lifted off my chest so I could finally breathe, and within the same breath, fear consumed me. I was paralyzed with the thought of losing all that I came to know, those that are most important and close to me. I feared being rejected by the very people I was supposed to depend on and look to when I needed support, the people who love me unconditionally. Was this the condition that would break those bonds? I felt raw and exposed. I was no longer hidden, living outside my pack that sheltered and protected me all those years. Unknown to me at the time, but coming out is a revolving door and each time I had to make myself susceptible to the possibility of ridicule and hatred in order to exist authentically. Fear is always sitting at the back of my mind that I would be taken out of the conversation and only my sexuality and gender would exist instead of my character. That I would suddenly be deemed unworthy of personhood based on my sexuality and gender expression alone. 

As I matured into adulthood, I became hyper independent. I wouldn’t ask for help or accommodations and I certainly would not claim the identity of disabled. I was in a battle with my internalized ableism. I learned from societal views early on that accepting your disability meant giving up and limiting the possibilities. In media, literature, and marketing, this was the story that was told over and over again until it became the narrative I gave myself. I had to hide and deny my disability or I would never reach my fullest potential. When it’s the only story being told, it’s hard to see another perspective even if it’s your own. 

Though I lived much of my adult life as an out and proud lesbian, I struggled to be proud of my disabilities and how they shaped the way I walk through the world. Just like I hid my queerness, and twisted myself into a shape that looked like it might fit so that I might not be found out in my youth. I did the same thing with my disabilities. I fought accepting myself in order to fit the standard I was told was required to lead a peaceful existence. 

My disabilities excluded me from conversations about my life and the possibilities held there.

We believe what we see and this becomes our reality. I was taught at a very young age that being different meant danger. That being disabled meant that you were limited in what was possible. That accepting disability meant accepting defeat and a life less fulfilling. I grew up in a world that mistreated, misrepresented, and abandoned the disabled and cast a shadow on the queer and gender non-conforming existence. I struggled to unravel the false narrative of society from my own lived experience. 

I spent most of my life hiding pieces of my identity that are interwoven into the fabric of my existence. I was afraid to accept myself for who I am because that meant living a life out in the open, exposed, raw and vulnerable against a society that would rather have me not exist at all. My sexuality, gender expression and disability out in the open meant living outside the boundaries of what society deemed acceptable and that took a whole lot of love to fight the fear if I chose self acceptance over societal expectations. 

I am grateful today to know and understand that I can be proud of who I am every day. My disabilities, sexuality and gender expression do not dictate my capabilities or the possibilities of what I can achieve, but they do shape the way in which I exist. All the parts of myself I was afraid to show are a part of the beautiful tapestry that is me and are worthy of embracing, love and acceptance. I have finally found Pride in it all.

Christina Gann is a content creator, artist, and scientist based in Colorado. They love horror movies, gaming with friends, and their dog, Oreo. You can follow Christina on Twitch, TikTok, Instagram, and X.

The Paradox Of Being A Girl: Trans Identity and Autism

by Blog Writers

By Megan Maverick

The girl in the poster looked like me. 

“DEVELOPMENTAL MILESTONES,” screamed the top of the poster, and beside the girl, one of the milestones said, “Plays with gender appropriate toys.” 

In a sense, she looked like the children who walked by her every day, too. 

She hung in the hallway of a school for autistic children. She was made to look like us; that was her purpose. 

In 2002, autism researcher Simon Baron Cohen penned a new theory of autism. According to Baron Cohen, men’s and women’s brains generally specialize in one of two skill sets: empathizing for women and systemizing for men. There’s an exception, though. Autistic people of all genders, allegedly, are extreme systemizers. It’s called the extreme male brain theory. 

It’s not the first time that autism was disassociated from femininity, and it won’t be the last, either. As early as 1944, when Hans Asperger first began to identify autism, he said he initially found it only in boys. To this day, some accounts of sex differences in autism report a 2:1 ratio of autistic men to autistic women. 

I was raised a girl, but I was bad at it. I didn’t shave, I sat with my legs open, and I wore dresses clumsily. When I interned at the DEVELOPMENTAL MILESTONES school, the CEO pulled me aside into a hallway and invited me to her class for autistic girls to learn how to dress and act more femininely.  

Autistic people are more than 7 times more likely to be gender variant. I am one of them. 

(And, while I can’t speak to other experiences today, I can speak to the experiences of autistic people who are raised, willingly or unwillingly, as girls. A 2019 study showed that, of 21 autistic people all raised as girls, not a single one related to the “typical presentation and activities of the female gender.”) 

The route through which I realized I am transgender was a circuitous one. It started with one fact: autistic women are not treated as women. I was an autistic woman; I found that I was not treated as one.  

From this, I played with the pronouns I used. I slowly realized she/her felt less and less genuine. I tried a binder, eventually got surgery to remove my breasts, and briefly experimented with low-dose testosterone gel. And somewhere along this journey — I couldn’t tell you where — I began to identify as agender. 

I want to write an essay about growing up disconnected from femininity, the ways in which being autistic means you are alienated from womanhood, the ways it contributed to my current identity. At the same time, I am afraid. Theories like Baron Cohen’s offer a tempting out to explain away my identity, offer a tempting in to further denial of autistic women’s womanhood. I am afraid of my story being used as evidence. 

There’s another theory I want to address: rapid-onset gender dysphoria, or ROGD. Put simply, ROGD poses that trans identity is a kind of social contagion among people raised as girls, one which preys upon the vulnerability of young girls’ relationship to misogyny. In this theory, young women are so turned away from womanhood that they turn to masculinity instead as a kind of shelter from the world. 

Does my story not confirm it? 

Let’s take a break from theory. Pause for a moment. I’m going to ask my cisgender audience a question: 

What does your gender feel like to you? 

If you radically changed your gender presentation, would it still feel comfortable? And if the world decided to call you sir or ma’am, whichever you haven’t used until now, what then? What if your driver’s license said the opposite? What if your birth certificate lied? What if not a single soul called you by your name? 

Is your gender not complex, too?

Autistic people and transgender people alike are rarely given the space to be as messy as non-autistic and non-transgender people alike. Whereas neurotypical cisgender people are given a fuller range of gendered brain possibilities, autistic trans people are given only extremes — or are seen as woefully misled.  

In the study I shared with you earlier, not a single autistic person in the gender study related to the tropes of womanhood. What I failed to mention was the true diversity of the participant’s experiences. Nine identified with aspects of both binary genders or felt fluid, eight felt like tomboys, eight more had identities related to interests or company, seven wanted to be boys growing up, seven identified with neither gender. 

Only one was transgender. 

The truth is: I think I have a good guess as to why autistic people are more likely to be trans. And the truth is: It doesn’t matter. If autistic people are more likely to be gender-divergent, then what that means is autistic people are more likely to need care. We are more likely to be vulnerable. We are more likely to face harm at the hands of others. 

If I struggled with girlhood and decided it was no longer for me, what then? I fear any search for a cause is eventually a search for a cure. Like autism, the “problem” of trans identity is not one that is fixed by finding a cause and fixing it. Autistic people are clear on this issue; trans people are clear on it as well. Instead, I call for those who love autistic people and trans people — and autistic trans people — to put aside the question of why we are autistic and trans. It is time to move onto the question of how to support us. 

In both cases, the answer is clear: listen to us, hear us, and stand with our demands for agency over our own lives. 

It’s time enough for that. 

Megan Maverick was born and raised in San Diego, California. Early in their life, they dove into autistic and queer identity head-on, working with the Autistic Self Advocacy Network and the National Disability Rights Network to further disability rights. They now work as a proofreader in Kentucky and spend their free time heaping adoration on their cats. 

Advocacy on the Hill: Easterseals New Jersey at the Easterseals Policy and Partnership Forum

by Erin Hawley

On April 17, Easterseals Affiliates and the National Office came together with thought leaders in Washington, D.C. to advocate for active-duty, veteran, and military families at the 2024 Easterseals Policy and Partnership Forum. Over two days, Affiliate leaders attended meetings with Congressional staff to advocate for the 4.7 million veterans with disabilities and the disability community as a whole. 

Matt in front of the U.S. Capitol.

Matt Binder, Senior Advocacy Specialist at Easterseals New Jersey, was excited to attend again after last year’s Policy and Partnership Forum on airline accessibility. “D.C. is one of my favorite weeks of the year. Talking to my colleagues across the country who are doing this work, hearing what they’re working on and their perspectives is interesting,” he says. Matt adds that every Affiliate location “has its own flavor” as far as what services they provide, and he found it exciting to see the breadth of Easterseals’ work in communities nationwide. 

Being at the center of our nation’s political beating heart is exhilarating. Meeting the Congressional offices representing every state, surrounded by the historical marble architecture and statues, Forum participants get to peek behind the curtain to witness the intensity in the day-to-day work of Congress. While Matt met with legislative staff, Congress was about to vote on aid to Ukraine, and many staff worried they would not have a Speaker the next day. Still, the legislative staff Matt met with, which included 12 different offices, confirmed their commitment to the work of Easterseals and the evolving needs of veterans and disabled people.   

In these meetings, Matt and his team at Easterseals New Jersey presented Congressional staff with their top concerns and support for bills that can positively impact disabled people and their families nationwide. One such bill is the SSI Savings Penalty Elimination Act, which will drastically raise the asset limit for SSI recipients to $10,000 for an individual and $20,000 for couples—currently, the limit is set to $2,000 and $3,000 respectively, which has not changed since 1984. Other legislative issues Matt shared include support for Medicaid funding to address the ongoing healthcare crisis, rising Medicare copays, telehealth access, and accessible and available transportation. 

Matt and Anysa of Easterseals New Jersey meet with Senator Cory Booker’s staff.

Direct care support is another big concern for Easterseals. “There really are no theoretical rights for our community without practical rights,” said Matt. “It’s great to say, ‘you can get a job,’ but if you can’t get out of bed in the morning, that’s not happening. And so you need direct care.” The bill, Recognizing the Role of Direct Support Professionals, would require the federal government to study issues affecting Direct Support Professionals and recognize them as a distinct profession from home health aides and certified nurse’s assistants. This bill passed the Senate by unanimous consent. “That never happens. So being able to go to the House and speak in this really divided Congress on something that’s actually moving … that was our top priority,” Matt added.  

During the Forum, various speakers addressed the issues affecting veterans and the disability community. Matt particularly found it inspiring to learn of the work at Easterseals Oregon to address veteran homelessness. “It’s really cool to see that perspective and the diversity of what we do [at Easterseals]. It’s just a really positive thing.” 

Speakers at the Forum included: Sheila Casey, Special Assistant to the President and Executive Director of Joining Forces; Hans Nichols, political reporter at Axios; Sharene Brown, veteran advocate and spouse to the sitting Chief of Staff of the United States Air Force, General CQ Brown Jr.; James “Patch” Ackland, the Veteran Career Services Manager for Easterseals Oregon; and Kendra Davenport, President and CEO of Easterseals, Inc. and daughter and spouse of career veterans. 

James “Patch” Ackland, Services Career Manager, Easterseals Oregon, at the 2024 Policy and Partnership Forum 

Easterseals also highlighted the Easterseals Disabled Veterans Study, which was conducted in partnership with Voya Cares. This study highlighted the urgent need for supports in employment and financial wellness, as well as mental health services for veterans as they transition back into civilian life. Caregivers are struggling and are frequently overlooked for support. These findings underscore the urgent need for services and care that Easterseals continues to provide every day, and the importance of backing from Congress and other leaders to widen and advance our impact. 

When asked about what he hopes for next year’s Forum and Capitol Hill Day, Matt shares that he wants to get more meetings with Representatives and to continue building on the progress Easterseals makes each year on the Hill. Collaboration is key, and what we can do when we are on the same path as advocates, service providers, families, corporate partners, and the entire Easterseals network is monumental.    

To learn more about Easterseals’ advocacy efforts, visit our website and follow us on Facebook, Instagram, and LinkedIn. 

Social Media is Actually Good: How Disabled People Can Stay Connected

by Blog Writers

by Grant Stoner

Social media is always a contentious topic. Conversations surrounding ownership, misinformation, and relatives who share one too many “Minion” memes are always at the forefront every time platforms are mentioned. Yet, for disabled individuals like me, social media is a powerful tool that lets us interact with the world.

With a physical disability like Spinal Muscular Atrophy type 2, I’ve never been able to leave my comfort areas. My home and surrounding neighborhoods are familiar to me both with their relative distance to my medical equipment, as well as their overall accessibility. If I leave with family or friends to go see a movie, I can know with full confidence that the theater will be accessible. With social media, I can explore new areas, events, and interact with people from across the world, all within the confines of my home. For disabled individuals, social media is simultaneously a gateway and lifeline to the outside world. For me, social media allows me to perform my job as a disability reporter, maintain decade-long friendships, and even stay connected with my long-distance partner.

Social Media and Journalism

As a physically disabled reporter in the games industry, I am consistently covering games released by studios around the world. From California to Japan, I have had the privilege of speaking with developers to explore what makes their titles so accessible. These connections were all made possible through my interactions on platforms like X/Twitter. Every time a developer posts news or announcements, I can use my platform to connect with them and inquire about potential interviews or future updates. And as much as I would like to physically travel to these places, the overall cost, stress, and potential inaccessibility all pose too great of a risk. Thankfully, with social media, traveling is not a requirement.

Aside from having opportunities to highlight new accessible games, my platform on social media lets me directly connect with the individuals who benefit from these advancements. Disabled communities thrive on social media. Regardless of location, preferred system, or disability, social media lets disabled players celebrate accessibility wins, voice their concerns, and more importantly, foster communities. And it’s the perfect tool for someone that actively wants to directly give disabled individuals a microphone. My entire ethos as a disability reporter is to let my sources speak for themselves, rather than let others speak for them. Social media lets me consistently see what needs to be told, opinions that need to be shifted, and who can most effectively tell these stories.

Grant and his partner.

Social Media and Friendships

I grew up playing across varying consoles and systems. And as technology progressed to let players connect from around the world, I found some of the most fulfilling friendships I’ve ever had. My primary friend group, one that is affectionately referred to as ‘The Boys,’ was formed after a chance encounter with one of my best friends in a Call of Duty: World at War Nazi Zombies match. The hour-long game in 2009 soon transformed into regular calls on Xbox 360 party chats. Eventually, the two of us found more people looking to unwind after school and just play some games. Left 4 Dead 2, Borderlands, and especially Call of Duty became staples for us. And as we moved to new systems, the core group remained, even driving from across the country just to meet in person.

With Covid-19, all activities ceased to exist, except interactions on social media and in games. Since my friend group is primarily composed of people 

from across the United States, as well as several local friends, I never felt a sense of separation. Yes, I missed going to theaters and restaurants with people, but I always had access to ‘The Boys’ in some fashion. Whether just talking on Discord or actively playing games with each other, the isolation period of the pandemic was far more manageable because of social media.

Social Media and Relationships

I’ve already stated how social media lets me do my job as a disability reporter, and how it allows me to remain connected with friends despite distance, but it’s equally important with helping me to stay connected with my partner. My partner and I met on X/Twitter in 2021. Both of us are members of the disabled community, and we each have work within the games industry. She is a consultant specializing in cognitive accessibility, and I write articles on the work that consultants do. For years, we would support each other’s work, joke with each other about topics like Pokémon and the disabled experience, and just generally enjoyed each other’s company. In August 2023, we decided to be more than just friends, and it was all possible because of our years of friendship on social media.

Being in a transatlantic long-distance relationship is not easy. There is a five-hour time difference, unstable Internet, and schedules that can occasionally conflict with one another. Yet, our relationship is possible in large part due to our capability to continuously be in touch through multiple social media platforms. There isn’t a single day where we don’t connect in some fashion. Whether it’s sharing screenshots of our New York Times Connections scores, or sending each other music from our favorite artists, we are always speaking to each other in some fashion. And when we finally do reconnect in person after months of distance, there are no awkward moments or feelings of not understanding one another – all because of social media.

Social media certainly has its flaws. It can be used to promote hate, it can censor crucial forms of protest, and cause immense feelings of stress and anxiety with always having an online presence. Yet, it allows people from around the world, regardless of disability, class, race, gender, or sexuality to connect and find their communities. It creates job opportunities, long-lasting friendships, and fulfilling romantic relationships. I may complain about social media, but at the end of the day, I will always support its use and existence. After all, for people like me, it’s a perfect tool to experience the world beyond the four walls of my room.

Grant Stoner is a disabled journalist covering accessibility and the disabled perspective in the gaming industry. When not writing, he is usually screaming about Pokémon or his cat, Goomba, on social media.

Farming Made Accessible with Michigan AgrAbility

by Erin Hawley

Getting food from the farm to the table is not always as accessible as it should be. There are many farmers who need support for their disabilities on the job. The average farmer age is 59 and above, and a lifetime of repetitive, physically demanding labor often leads to work-related injuries and disabilities. In 2021, there were 387 work-related farm injuries in Michigan.

Photo credit to Michigan AgrAbility.

Farmers are vital to our food supply, and AgrAbility ensures the people they serve can access their livelihood with adaptive tools, physical therapies, and connecting them to financial and mental health resources, as well as connecting them to farmers in similar situations to provide support and mentorship. 

The AgrAbility project is part of a competitive U.S. Department of Agriculture and National Institute of Food and Agriculture (USDA-NIFA) grant program where land grant universities partner with disability nonprofits in 22 states to execute the project. In Michigan, that partnership is between Michigan State University Extension and Easterseals MORC. At the national level, AgrAbility was first funded in the 1990 Farm Bill, shortly after the passage of the Americans with Disabilities Act. In 2023, Michigan AgrAbility supported 215 clients. The individuals they served had a wide range of disabilities, including arthritis, back pain, amputations, paralysis, hearing or vision loss, and chronic fatigue.  

Bev Berens, Outreach and Communications Coordinator with Michigan AgrAbility, says: “We help [farmers] by assessing their needs for each situation, and making recommendations for assistive technology [AT] that will help them continue to do their jobs on the farm. Some cases get referred to Michigan Rehabilitation Services for further financial support in getting some AT items that are more costly. Sometimes we are able to provide lesser cost items. Other times, the farmer makes, purchases, or creates what is needed.” 

With many connections to Michigan’s agricultural community, Bev understands how farming and farmers are essential to life, as they grow the food that we eat or the food that we feed livestock. She adds, “It is important to keep farmers able to work because it is usually their life’s work, dream, and passion. Being able to work provides purpose and contributes to the family income.” 

Kevin Klink on his farm. Photo credit to Michigan AgrAbility.

AgrAbility participant Kevin Klink had a major heart attack at the age of 26, which greatly impacted his stamina and ability to keep up with his cattle farm. Reaching out to AgrAbility wasn’t an easy choice for him because he didn’t want to think of himself as having a disability even as he struggled to keep up with the demanding work.  

Ned Stoller, the Agricultural Engineer at Michigan AgrAbility, visited Kevin’s farm and was able to access and offer plans for adaptive technology with the support of Michigan’s Rehabilitation Services, which allowed Kevin to get back to doing his life’s work. This technology included a portable cattle corral, grain bin lid openers, and a mini skid loader for cleaning individual pens and driving through pasture gates. “There is as much an emotional side as a physical side to the equipment that came through this process,” Klink said. “It has eased up things for my family and I don’t have to worry about them or myself falling and getting hurt while we are handling cattle. The OK Corral system is portable, heavy duty, and works great wherever we need to be. I don’t have to worry about a cow crashing over lightweight gates and someone getting hurt.”

Stoller’s technology consults are vital to the success of the Michigan AgrAbility program, and he has worked with other state and regional AgrAbility programs to offer advice, support, and design plans. Bev shares that, while AgrAbility isn’t able to directly provide any assistive technology due to federal restrictions on funding, Ned drafts plans and drawings for different assistive technology solutions and offers them to farmers at no cost. There is also an informal tech bank that families of farmers who have passed donate farming technology back to AgrAbility so they can go to more farmers in need. 

Evan using his all-terrain wheelchair. Photo credit from Easterseals MORC.

Michigan AgrAbility supports the farmer’s entire family as well. Evan, age 12, has Cerebral Palsy and likes to help his parents around their corn and pumpkin farm. Before Michigan AgrAbility, he had difficulty navigating the bumpy terrain and long distances with his walker and standard wheelchair. Ned Stoller connected with the family and recommended an all-terrain power chair that would provide better maneuverability. Michigan AgrAbility was able to provide a scholarship to help pay for the chair, giving Evan the independence he needed to thrive. “I want to be a YouTube steamer for my side job,” Evan said. “But my real job will be a businessman and working with my dad.”   

Another aspect of Michigan AgrAbility is the importance of their work with Spanish-speaking participants, largely carried out by Andrea Garza, a Certified Occupational Therapy Assistant who works with Michigan AgrAbility through Easterseals MORC. “Range of motion assessments and arthritis screenings are conducted with migrant and Spanish-speaking populations on farms. The assessments are done onsite in Spanish, which is particularly important and helps provide a comfortable and safe atmosphere. Andrea shares ways to reduce fatigue and relax muscles and mitigate pain. Each worker who completes a screening is provided with a gift, such as shoe inserts or knee pads, to help alleviate pain from everyday tasks,” Bev says. 

When asked what the most rewarding part of her work is, Bev shares that it’s “helping people continue their work and see and feel the gratitude and joy they have after they have been through the process. It is rewarding to hear how they are using the AT and how it is helping them do their work, reduce frustrations, and improve quality of life.” 

To learn more about AgrAbility, visit the Easterseals MORC website. Thank you to Bev Berens, Ned Stoller, Samantha Wolfe, and Heidi Vanderbeek for their interview and guidance with this blog post.

Can Virtual Participation Lead to Discrimination?

by Blog Writers

By Mike Ervin

There was a time when I was adamantly opposed to indulging in any form of “virtual” participation, such as attending a meeting via Zoom.

Virtual participation seemed like an oxymoron to me. At best, I considered it to be a pale substitute for the real thing. My online dictionary says that virtual means “almost or nearly as described, but not completely or according to strict definition.”

I think this deep aversion to all things virtual was at least partially due to my disability. I thought that the disabled activists whom I revered for paving the way for people like me fought hard for my right to fully participate in the world around me. I took that too literally. I felt that doing anything less than showing up in person to take part in everything was to betray them. I always showed up at my polling place and voted in person, rather than voting absentee, for the same reason. I thought it was my obligation to do so.

But then the pandemic hit and everything shut down. Ironically, this also meant that everything opened up more for disabled people, in a way, because practically all participation became virtual. When everything was shut down, about the only way to have any contact with anyone outside of your immediate household was via Zoom and such.

So I gave in. I realized that if I didn’t participate in things virtually I might not participate at all. I might get left in the dust. I’d be even more isolated.

Now that life has reopened a bit, my perspective on virtual participation has changed. I’ve been experiencing a weird phenomenon of late where I meet someone in person for the first time but I’ve seen them many times before on my computer and/or my telephone screen so I feel like I already know them well. And I‘ve come to realize that I probably never would have met any of these great people or had any of the great experiences I had with them had I stuck to being such a purist.

I still do Zoom with some frequency for the sake of convenience and when I do, I don’t feel as if I‘m betraying my disabled ancestors anymore. My perspective now is that they fought so hard for my right to have choices and the power to exercise them, so that I could participate in the world around me in whatever manner suits me best. I think they would consider that sort of connectivity to be a good thing. So what if my online dictionary says that virtual means “almost or nearly as described, but not completely or according to strict definition.” Maybe just by doing our thing in our own way, people with disabilities can redefine what it means to participate. Trying to keep moving forward during the shutdown showed me that it’s the end that matters, not the means of getting there. Disabled people often just do things differently.

Why should I go through all of the hassle of flying to Los Angeles for a business meeting when I can take part just as effectively from home via video conference?

On a cold day, I’m glad that I can work from home and not have to bundle up and commute to and from some office where I’d do the same damn tasks anyway. Just because a person finds it difficult or impossible to go to an office every day doesn’t mean that they can’t or don’t deserve the opportunity to make a valuable contribution. And I now reserve the right to vote absentee every now and then if that’s what I feel like doing. I voted by mail in the 2020 presidential election. I didn’t want to go to my polling place when so many public places were still shut down. But I didn’t want to not vote at all.

I don’t mind talking to my doctor online either. I don’t feel any obligation to show up at my doctor’s office in person if I don’t have to. Wouldn’t it be great if we all could do stuff like give ourselves x-rays and draw our own blood from the comfort of our own homes?

But all of this pertains to taking care of business. I still prefer making face-to-face contact with other humans whenever I can when it comes to trying to have fun. And I still think there is a certain emptiness to some forms of virtual participation. Seeing a video of the Eiffel Tower is not the same as seeing the Eiffel Tower in person. To me, there’s something sad about seeing a guy standing in his living room wearing virtual reality goggles and fighting off imaginary invading aliens from outer space with an imaginary lightsaber. I want to sit that person down, take off their goggles and gently remind them that there are no invading aliens from outer space in their living room and they do not have a lightsaber. I know it’s kind of silly for me to feel the need to hold an intervention like that. What that person does doesn’t hurt me any. To each their own, I guess.

I also fear that too much virtual participation may lead to some serious social regression for disabled folks. We all know that there are plenty of people out there, politicians and otherwise, who would just as soon see laws like the Americans with Disabilities Act get kicked to the curb. Maybe this will give them the excuse that’s needed for that to happen. Maybe they’ll say that since we have virtual access, we don’t need the real thing.

Maybe virtual participation will lead to a slippery slope. Or maybe I’m overthinking this whole thing.

Mike Ervin is a writer and disability-rights activist living in Chicago. He is a columnist for the Progressive magazine and writes the blog Smart Ass Cripple.

Navigating Through the Red Tape: Disabled Veterans and Financial Wellness

by Blog Writers

Earlier this month, Easterseals visited Washington D.C. to meet with representatives and share ways to break down barriers for our communities. We also had important conversations about supporting veterans and military families. We owe so much to our veterans and yet, according to our recent study about disabled veterans and employment, only about 1/3 of disabled veterans have enough money to handle their own emergency expenses. What do veterans experience when faced with financial challenges and what can they do to overcome them?

We chatted with Caleb Saxby, who was enlisted in the U.S. Army from 2002-2006, and deployed to Iraq from 2003-2004. Both Caleb and his wife, Amanda, who is also a veteran, are part of Easterseals Greater Houston’s Train your Own Service Dog program and attended Camp Coleman, a family retreat focused on integrating new service dogs into veteran and military families. Additionally, they have been guest speakers for Easterseals Greater Houston’s Youth Action Council.

Caleb and his family

How has Easterseals impacted your life?

My wife and I became connected with Easterseals when we moved to the Houston area a few years ago through the service dog program. At first, I was not sure about the service dog program, but honestly can’t imagine life without my service dog now.

What do you feel is the biggest challenge for military veterans and families when it comes to money management and financial literacy?

I know just from my own experience and from some of my close friends that leaving the military is a hard transition to make, even if it you weren’t injured or anything. Leaving the way that I did, after an injury, you aren’t necessarily super prepared for that change. Many did not plan on leaving and already have families to take care of and college is not always the best option. So, when you factor in not previously planning for it and work options being limited, many times veterans feel like it is an uphill battle immediately and they just can’t catch up.

How can having a disability impact a veteran’s financial options in your experience?

You have to take into consideration that we may or may not be able to physically do the same types of jobs you have training on or have previously done, so a lot of us go in the workforce again at the bottom rung when leaving the military. You also have to think about the missed wages due to multiple doctor appointments and various things that are now a regular thing for many veterans when coming home.

What do you wish more people knew about the process of reintegrating into civilian life and financial stability after service?

Well, if I could speak to the people who are currently in the military, I would advise them to start preparing now because it really does make a difference. If you are like me and many others though who left the military unprepared fully, there are options for help out there for you. There are people to even help with navigating your way through all the different programs you may be qualified for, so check into it and do your homework to find out what is out there.

What advice might you give a fellow veteran or military family members who are feeling overwhelmed about their financial situation?

I would just let them know that there is help available if you need it. Yes, there is red tape a lot of the time, and it can be a headache. It is worth it though for not just the veteran but their entire family. When you do get the help you need, use it for the intended purpose. Use it so you aren’t going paycheck to paycheck and wondering if there is enough in the bank to make it to the next payday.

Through our partnerships and referrals, Easterseals is dedicated to supporting the well-being of veterans in our communities. That’s why we have collaborated with Freddie Mac to share free and accessible money management tools for veterans and military families. Through CreditSmart Military, you can learn about building credit, working through debt and more. If homeownership is a goal, this program can set you up for success.

As Caleb pointed out, it can be overwhelming to navigate the help that is available. Easterseals is available to help shift through the red tape so that you are connected with the right support. Contact an Easterseals near you to learn more about services offered in your area.

Communities Making Accessible Transportation: How We Can Work Together

by Blog Writers

By Jeremy Johnson-Miller

“How did you get here today?”

For many, this may never be a second thought, but for others, it is a daily reminder of the extra planning and reliance of others needed to get where they need to go. Many disabled people understand this well – whether it’s figuring out accessible public transit routes (Does this station have a working elevator? Does this bus route get me close to where I need to go?) or wondering if you will encounter ableism on your journey (Will a taxi pass me by when they see I use a wheelchair? Will people question my service animal?).

Even when someone reaches their destination, they may still encounter obstacles in their travel. A crack or broken sidewalk may not hinder someone who is not disabled, but for others it could mean they can’t use that route and must go blocks out of their way or even into the street to bypass the damaged pathways.

Transportation offers independence for people with disabilities, allowing them to get to school, work and social activities, but when one of these connections fails, it can disrupt their entire day or week.

Throughout my career, I met some amazing people who let me learn about life from their perspective.

Jeremy and Aunt Nancy

My passion for transportation started at an early age; my aunt Nancy had poor eyesight that barred her from driving, but that did not stop her from living a full life — she passed that life skill along to me. I would meet her downtown during summer breaks for lunch, picking out a book at the library and, of course, ice cream.

Michelle lives downtown and works several blocks away and uses a motorized wheelchair to traverse the city, but in the winter or during construction season, the path of travel is often blocked or unsafe. Michelle uses the phrase “the sidewalks are my roads” when speaking to city leaders about the importance of sidewalks for her to thrive, and if those fail, she is unable to succeed.

Immanuel lives and works along a bus route, but also values social life beyond work. Immanuel has used a wheelchair his entire life, but because of the limited hours of operation for transportation, he often says, “it’s like I am a 30-year-old with a curfew.” The bus does not operate after 10pm and they cannot go to a late movie or stay out late with friends.

Jeremy and Michelle

These are only a few stories from my 10-plus years working in transportation, but I have a motivation to keep going, nonetheless. People like Michelle and Immanuel, and of course Aunt Nancy, make me want to keep learning and showing up for those who cannot.

Part of my job at Easterseals is sharing ways all of us can make a difference in accessible transportation.

Here are a few actionable items:

• The work we can do starts off with being aware of our surroundings and making sure there is adequate space for everyone to navigate walkways or paths.
• If you notice obstacles blocking a sidewalk, driveway, or building entrance, find the appropriate person to move them.
• If you are a business owner, make sure your signage or furniture is not blocking a path.
• Notice an elevator is out of order? Tell the building staff, even if you don’t need the elevator.
• During snow season, make sure your sidewalks are shoveled.
• Attend town meetings to advocate for safe crosswalks and paths of travel.

Working for an organization like Easterseals has allowed me to put that knowledge into action and continue to create an accessible world for all. Easterseals offers vital resources like customized training and technical expertise on the Americans with Disabilities Act for transportation providers; develops resources to support organizations in their efforts to connect with transportation and mobility services in their community; and identifies organizations in your state, region, or local community that could connect you to the most appropriate transportation services and support the development of coordinated transportation networks.

To make safer, more accessible communities, we must plan transit alongside the disability community. They are the experts on their needs — we can connect with them to advocate and get the attention of government and transit officials. This is and should be a community effort as it benefits all of us to have accessible public transportation options.

To learn more about the Easterseals Transportation Group and what we are doing to create more equitable access to services and settings that everyone should be able to enjoy, visit our website.

Jeremy Johnson-Miller is the Communications Manager for the National Aging and Disability Transportation Center (NADTC) at Easterseals, a federally recognized technical assistance center funded by the Federal Transit Administration, focused on ADA accessibility for older adults and people with disabilities across the country. Jeremy coordinates the release of publications and reports from NADTC, also conducting training and group facilitation for transportation agencies and state DOTs across the country. Prior to joining Easterseals, Jeremy served as Mobility Programs Administrator at Iowa DOT Public Transit Bureau for 6.5 years, providing guidance and oversight of state and federally funded grant programs, also overseeing outreach and collaboration with communities and other state departments within Iowa. Jeremy holds a bachelors in Geography from the University of Iowa and is a Certified Public Manager from Drake University in Des Moines, Iowa.