Accessible Transportation: A Lifeline to Connect Individuals to Their Communities

Easterseals Accessible Transportation

By Andrea Jennings

Accessible transportation serves as the lifeline for many individuals, fostering connections to communities, enabling access to essential services, and promoting independence. We will explore the impact of an accessible transportation process for all and the importance of accessible design in transportation services, from booking transportation, accessible drop-off and pick-up locations, and seamless connections to arriving at destinations with undamaged mobility aids.

The Seamless Transition: A Personal Anecdote

A Black woman using a black cane with a black baseball cap covering her dark brown shoulder-length curly hair is posing by a blue suitcase at a hotel, waiting for her transportation to the airport.As someone who uses multiple mobility aids, I have experienced the impact of navigating different modes of transportation with different mobility aids. I use leg braces, canes, and walkers, depending on my muscle weakness and fatigue level. I often use a wheelchair for traveling as it preserves my energy and reduces my risk of falling. I vividly recall a journey emphasizing the importance of an accessible, seamless transition for transportation. On my way to an essential conference in my industry to connect me to my peers and the community, I faced barriers due to a lack of communication between the transportation company’s staff members.

Boarding the train, my intended mode of transportation for that day, was accessible, but connecting to a bus ride through that carrier posed potential barriers. Once I exited the train to transfer to the bus, I could not find any clear instructions or signage to tell me where I could safely wait for the connecting bus and where the bus would arrive. If it had not been for my personal care attendant, who could track down staff members eventually, I might have missed the bus. I should have been able to travel independently with accessibility procedures integrated into the process of transferring from the same carrier’s train to their bus connection. This process could be more seamless, benefiting everyone. This is a great time to mention that hiring persons with lived experience in leadership positions as executives is essential to ensure that different perspectives are included when planning or restructuring designs. Accessible transportation ensures that individuals can move from one mode to another effortlessly and facilitates a sense of connection within the community.

Time Constraints and Accessible Share Rides

A colleague and friend, project manager Ushonda Wilson, highlighted a significant issue within accessible share rides – time constraints. Ushonda explained that she had to leave a work-related community event early because her mode of transportation, which included a train and a ride-share service, only ensured accessible services up to a specific time of day. Time restraints create barriers because Ushonda was excluded from full participation in an important work-community and career-enhancing event. While some of these ride-share services are cost effective, these services often impose strict time limits, hindering individuals with disabilities from thoroughly enjoying community or career-related events. By shedding light on these limitations, we can advocate for more flexible and inclusive policies allowing everyone to travel to work and participate in community activities without undue restrictions.

Drop-Off and Pick-Up Stations: Signage is Essential

Ride-share services play a pivotal role in accessible transportation. Well-defined drop-off and pick-up stations make a significant difference in the effectiveness of these services. Clear signage ensures that designated areas highlight and promote a smooth, accessible, stress-free travel experience.

Shelter and Safety While Waiting

While waiting for transportation, shelter and safety provisions are integral to the transportation experience. Covered waiting areas protect from the elements, ensuring that rain or harsh weather conditions do not become barriers to accessibility. Again, this is a feature everyone can benefit from; extreme weather conditions aggravate many disabilities. By addressing these concerns, we create an environment that prioritizes the well-being of all passengers.

Training Staff on Accessibility Measures: Understanding Disability Etiquette

A Black woman wearing glasses and using a pink rollator with black wheels stands with one arm on the rollator and the other raised in the air. She has a curly natural hairstyle with blonde highlights, and she is wearing a short waist-length leather black jacket with a pink midriff blouse, blouse, jeans, and white tennis shoes.

A key aspect of accessible transportation is ensuring that the drivers and the entire staff, internally and externally, are well trained to address accessibility measures successfully and adequately assist individuals with disabilities. This training should encompass awareness of different disabilities, sensitivity to diverse access requirements as we are not a monolith, and the ability to identify and support passengers requiring additional assistance beyond compliance. Design improvements that allow us to stay in or use our mobility aids or provide the proper storage of our mobility aids while on board is crucial. There are too many instances where mobility aids have been damaged during travel. These changes not only affect our connection to the community because we fear traveling due to the concern of our mobility aids being damaged, but this affects our health and can be a matter of life and death, as it did in the case of Disability advocate Engracia Figueroa. By doing so, transportation providers create a more accessible and inclusive experience for all.

Contingency Plans for Transportation Companies

Contingency plans are essential in the realm of accessible transportation. Companies should establish protocols for unexpected situations, ensuring that individuals with disabilities are not left stranded or facing undue difficulties. A solution is to address unforeseen challenges such as vehicle breakdowns, road closures, or any other disruptions that may impact the smooth operation of services. Also, disseminate these contingency plans in an accessible format in plain language for all to comprehend.

Well-Trained Staff Across Industries

In addition to transportation companies, various industries play a role in ensuring accessibility. Hotels offering shuttle services, public transportation agencies, and other service providers must invest in training their staff on properly addressing and integrating accessibility throughout their company’s infrastructure. This approach extends the principles of accessible transportation beyond the vehicles themselves, creating a holistic and supportive environment for all.

Connecting to Employment and Essential Services

Accessible transportation is not merely about convenience; it is a gateway to employment opportunities and essential services. For many individuals with disabilities, reliable transportation is the key to accessing workplaces, medical facilities, and educational institutions. By highlighting the role of accessible transportation in connecting people to these vital aspects of life, we underscore its broader societal impact.

Universal Design and Human-Centered Design for Inclusive Transportation

A Black woman with brown curly hair blowing in the wind and a black headband around her hair is wearing a black cane and black leg braces with all back attire on, including a denim jacket blouse and tennis shoes/sneakers. She has white decorative designs on her blouse.A universal design approach to accessible transportation benefits society as a whole. Ramps, wider aisles, and other accessibility features make transportation more human centered and user friendly for all, including parents with strollers, aging adults, and individuals with temporary injuries. Embracing universal design principles enhances the overall accessibility of transportation systems and reinforces the idea that inclusivity benefits everyone.

Promoting Independence Through Accessible Transportation

Perhaps the most profound impact of accessible transportation is the independence it provides. By removing barriers to mobility, these services empower everyone to lead more fulfilling lives, participate actively in their communities, and pursue opportunities that were previously out of reach. Accessible transportation is a service and a catalyst for our future, prioritizing accessibility and serving all communities.

Conclusion

As we work towards a more accessible future, let us recognize how accessible transportation is vital in enriching lives and strengthening the bonds within every community. Accessible transportation is not just a means of getting from point A to point B; it is the lifeline that connects individuals to their communities.

By prioritizing accessible design in all aspects of transportation, from the moment a person books their travel to the moment they arrive at their destination, we can create an accessible and inclusive transportation system that helps all connect to their communities.

The journey toward accessibility requires ongoing collaboration, communication, and a commitment to creating a more connected, inclusive, and accessible society.

Andrea, Black woman with brown curly hairAndrea Jennings, M.Mus., is a Disability & Accessibility Strategist, Actress, and filmmaker passionate about music, law, and entertainment. Her journey led to creating Shifting Creative Paradigms – Leveling The Playing Field® Multi-Media Production Co., advocating for social justice through Disability culture, film, music, and art. Her work has graced prestigious platforms like Park Avenue Armory, The Metropolitan Museum of Art, and Rutgers University. Her work is also recognized in Forbes, Billboard Magazine, The Atlantic Magazine, The Hollywood Reporter, and The New York Times.

 

Why We Need Accessible Cities

Easterseals Accessible Transportation
By Mids Meinberg

The United States is a car-centered culture. While increasing work-from-home and delivery options do increase the viability of staying at home, there are still a wide variety of tasks that require a person to leave the home. In most of the country, leaving the home means driving to reach that other location. Many disabled people, including myself, are unable to drive because of our disabilities. This cuts us off from so many aspects of culture and life and forces dependence on others for many vital aspects of survival, like medical visits.

The idea of the “walkable city” has become an increasingly popular discussion in online spaces. Essentially, a walkable city is a way of building communities so that all necessary facilities for employment, survival, and entertainment can be reached within a fifteen-minute walk from any given residence. These sorts of integrated communities are more common in Europe. When I lived in a German village, for instance, I was able to reach anything within that village with a short walk, despite living on its outskirts, ranging from cafes to bakeries to the village center. Perhaps more importantly though, I could easily get to a bus stop.

Making walkable cities would require vast overhauls in zoning regulations and existing infrastructure and is not an especially likely outcome, at least in the short term. More achievable, though, is enhanced public transit networks. Where I live now in the suburbs of New Jersey, an area unusually dense in public-transit options for the suburbs, I am a three-mile walk away from the nearest public node, and that is too far for me to be able to walk — even if the route from my home to that bus stop was safe for pedestrians, which it is not!

Accessible travel benefits everyone. Collage of different cities

Denser public transit nodes might be more expensive for municipalities, but the benefits they offer for all citizens cannot be understated. Cars are extremely expensive and force most people to go into heavy debt to acquire one. If people were able to get to where they need to go without driving, then they would be able to more comfortably manage their finances, even for nondisabled people! It is an especially pressing matter for disabled people, though, as a wide variety of disabilities prevent driving.

For me, a combination of low vision and anxiety make driving impossible. For others, mobility disabilities can prevent the ability to drive. Indeed, the high level of danger involved in driving should make people more interested in public transit options to get from place to place. Any degree of driving skill less than master makes the roads less safe for everyone involved, not just the driver. According to a study by the National Library of Medicine, cars are 4 times as likely to have accidents than buses. Serious injuries were twenty-eight times more likely for car users than bus passengers!

In addition to the safety functions, having more buses means fewer vehicles on the road which reduces traffic for everyone. While there are obviously costs involved in expanding a bus network, the benefits far outweigh these costs. Being able to connect to a broader community allows people to live fuller, more engaging lives, not only through access to services but also access to employment. The vast majority of entry-level work positions in the United States require access to regular transportation, which is a major impediment for disabled people finding work.

I personally have struggled to find work thanks to my inability to drive, my inability to access places that would be willing to hire me. While work-from-home (WFH) jobs experienced a surge during the height of the pandemic, workplaces using WFH have begun to decrease in number since then. In addition, WFH jobs almost universally require access to higher education. Entry-level positions for people without a college degree are almost always in person. While many of these positions might be inaccessible for some disabled people, there are plenty (like basic office jobs) that most disabled people can do, but only if they could get to the office.

Larger cities typically already have some public-transit networks in place, but even these networks could become more broadly accessible. The subways of New York City are infamous for their expansiveness but also their corresponding complexity. Simpler or more abstract subway maps could be helpful in increasing navigability for people who struggle to understand the existing map. In addition, almost every subway station in New York City is not wheelchair accessible, blocking wheelchair users from using them safely or at all. While there are some subway stations with elevators, these elevators frequently break down due to lack of maintenance.

Similar problems exist in other cities with subways or elevated rails. In addition, some buses can be very complicated in using their wheelchair accessible functions, to the point that some bus drivers are not educated in their function. Expanding awareness and demonstrating usage of the ramp and lift functions would go a long way in helping to make sure that wheelchair users are more integrated into our pubic transit networks.

Trolley systems can be a functional alternative to subways or elevated rail, and since they don’t require a change in elevation, they are inherently more accessible. That said, trolley lines do take up space on the road, and thus are less traffic efficient than subways or elevated rails. They are relatively rare as well, with buses tending to fill in for the same role. Trolleys, despite their lack of flexibility, are even safer than buses, are quieter, and pull power from the grid rather than requiring fuel, making them significantly more cost effective in the long run. Urban spaces with larger land area could truly benefit from the inclusion of trolleys into their public transit networks.

When I lived in Germany, I made several trips to the Hague in The Netherlands as part of my social studies curriculum. The freedom to be able to catch a trolley from just down the block from our hotel and ride it all the way to the centers of commerce and entertainment and culture in the city, along with my classmates, and to feel like I was truly immersed in the city despite not being able to drive, is a treasured memory that I will never forget. Walking down the boardwalk with the frigid air coming off of the North Sea, salty in the early evening air, and knowing that the hotel was a short trip away in a warm trolley was something only available because of the amazing public transit options in the city.

Let’s work to make more public transit available for everyone.

Mids Meinberg is a writer and game designer working out of New Jersey. They have an AA in Creative Writing from Brookdale Community College.

 

All I Want is an Easier Way to Get New Durable Medical Equipment

Graphic of three presents that have "All I Want" text on them.

Editor’s Note: This blog shows the complex systems disabled people have to navigate just to receive the equipment they need to live. Have you experienced something like this? Share in the comments! 

By Mike Ervin

You could say that 2023 was The Year of Receiving New Durable Medical Equipment (DME) for me. I finally took delivery of a lift (a.k.a. Molift Smart) so that now my assistants can transfer me by basically pushing a button. I also finally took delivery of a commode that can be slid across a detachable rail into my adjacent bathtub, where it becomes a shower chair. Now those same assistants can just slide me from toilet to tub and back, no lifting required.

But you also could say that 2022 was The Year of Jumping Through a Lot of Flaming Hoops in Order to Acquire Durable Medical Equipment for me. About 18 months passed between the day I began the process of acquiring my new DME and the day I took possession of it.

I suppose the process would have gone a lot faster if I had enough money to pay for my DME directly. But I just assumed I didn’t. I don’t even know how much my DME cost. I just assumed that it was grossly overpriced, as DME tends to be, and thus far beyond my range of affordability. I tend not to even think about researching DME or other assistive technology that might make my life better for the same reason I never go shopping on the swanky Magnificent Mile here in Chicago. I figure all I’ll be able to afford to do is window shop. Some people find that to be enjoyable. It motivates them to achieve their aspirations. But I find it to be depressing and frustrating. It’s a cold, harsh reminder of how far I am from where I thought I was.

So, I turned to the Illinois Department of Human Services for help. My counselor (fancy name for social worker) said I had to begin the process by getting an evaluation and referral from a therapist. A physical therapist and an occupational therapist came to my home and took a lot of pictures of my bedroom and bathroom. I already knew what kind of DME I wanted so all the therapists did was put together a multi-page report (complete with pictures) detailing why I needed this type of DME and recommending that DHS purchase it for me.

A Hoyer Lift

The Molift Smart

A few weeks later I contacted my DHS counselor for an update, and she told me that she now had to put the referral out for bidding. That meant that she had to invite several DME dealers to tell the state how much they would charge to supply me with the DME.

A few weeks after that, my counselor informed me that the bidding process had run into a snafu. Only one dealer responded, and she had to have at least three bids to submit to her higher-ups so that they could select a winner. She said she felt as if she was at an impasse. She didn’t know how to proceed. I finally convinced her to submit the single bid to her higher-ups and explain to them that although only one dealer responded, I still needed the DME. But, she said, before she could do that she had to submit a claim to my insurance because, even though we both knew that the DME wasn’t covered by my insurance, she would need an official rejection from the insurance company stating that this type of DME wasn’t covered to submit to her higher-ups. Otherwise, she said, they would probably kick it back to her and instruct her to submit it to my insurance first.

It took a few more weeks for all that to play out. And then, a few weeks after that, my DHS counselor informed me that we’d hit another snafu. She said her higher-ups instructed her to begin the bidding process anew, this time for a cheaper, lower-end lift that my insurance might cover. I told her to please explain to her higher-up that a lower-end lift would not meet my needs. I told her some of the reasons why. She said she would plead my case to her higher-ups, but I would first have to get a note from my doctor explaining that I needed the type of DME I was trying to get the state to buy and why.

My doctor and I have been through this many times. Whenever I’ve gotten a new wheelchair or a wheelchair repair or some other kind of DME, he’s had to supply a note of medical necessity. He finds this to be very amusing because he doesn’t know squat about wheelchairs or wheelchair repair or any of the stuff that I need, but he figures that I must need it or I wouldn’t be asking him to authorize it. So I give him very explicit instructions stating exactly what I need him to authorize and he crafts a note authorizing it. And the next time I see him I explain to him what he authorized.

Well I finally got the state to pay for my DME. And now I’m just praying that it never breaks; I fear that will set me off on another dizzying odyssey, like when my wheelchair breaks. When that happens, I call one of the two behemoth companies that sell and repair wheelchairs that are still in business in these parts. I usually know what’s wrong with my wheelchair. I just don’t have access to the parts that will fix it or the wherewithal to do the repair. So the repair people at the wheelchair company offer me their first available appointment to have a repair guy come to my home and officially diagnose what’s wrong with my chair, which is usually anywhere from two to six weeks up the road. The repair guy comes over and confirms what I already told them was wrong and then the weeks-long process begins of the wheelchair company sending a claim to my insurance company (along with my doctor’s authorization) and my insurance company deciding whether or not they’ll pay for the repair — and then the wheelchair company ordering parts and when the parts finally arrive the wheelchair company arranging another appointment for the repair guy to come back out to my home and fix my wheelchair.

This is why I always hang on to my old wheelchair after I get a new one and keep it in a closet as a backup. I know that when my new chair breaks, it’ll be out of commission for several weeks.

So here’s hoping that 2024 will be The Year of No DME Breakdowns for me.

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.

 

All I Want is Equity: Embracing Accessibility Beyond the Holidays

Graphic of three presents that have "All I Want" text on them.

By Andrea Jennings

Inclusivity and accessibility should not solely be a mindset for the holiday season but a mindset and lifestyle that people can carry into their workspaces, family life, and community throughout the year.

The connection between inclusion, accessibility, and the holiday spirit is simple; it is the fusion of holiday cheer and the fundamental values of fostering an inclusive environment.

In my line of work as an accessibility strategist, I encourage embracing each individual’s uniqueness, recognizing that our differences contribute to the rich tapestry of humanity – just as we celebrate diverse traditions during this time,

A black woman wearing a black shirt and pants is sitting on a white chair in front of a tall Christmas Tree decorated with Robin's Egg Blue ornaments and decor.During the holidays, people worldwide do their best to make others feel welcome, practice generosity, and go above and beyond to ensure their guests and loved ones have enough to eat and are comfortable. When planning dinner parties or events, they check in with their friends to see if they have allergies or preferences. Hospitality should be a year-round practice.

Moreover, the understanding exhibited by employers, acknowledging the additional financial strain during this period and offering holiday bonuses, reflects a commitment to the well-being of their employees.

Let’s look at some proactive ways to help bring the holiday season forward.

Wellness and Accessibility in The Workspace:

  • Foster a workplace culture prioritizing employee well-being through wellness days off, adaptive yoga, fitness programs, mental wellness resources, and ergonomic and accessible workspaces.
  • Provide and encourage sensory and focus breaks.
  • Create a sensory room or quiet space where employees can focus, listen to music, read a book, or simply reduce stress.
  • Encourage remote work to provide accessible options.

Create Accessibility and Inclusive Design Job Positions:

  • Hire specialists and individuals with lived expertise! Bringing in accessibility and inclusive design experts demonstrates a commitment to creating products, services, and environments that cater to everyone.
  • Comprehensive Teams: Forming a dedicated accessibility team, including experts in design, compliance, and user experiences, ensures a holistic approach to accessibility.

Accessible Events, Content, Media and Technology:

Promoting accessibility in media, technology, and entertainment during the holiday season is crucial to ensure inclusivity for everyone. Here are some ways to prioritize accessibility in these areas during the holidays and New Year!

Closed Captions and Subtitles:

  • Ensure that television shows, films, and online content include accurate closed captions. It is essential for d/Deaf or hard-of-hearing individuals.

Audio Descriptions:

  • Incorporate audio descriptions for blind or low-vision individuals to provide a detailed narration of visual elements, actions, and expressions during holiday-related programs or events.

Accessible Websites and Apps:

  • If you have a website or app related to holiday events or services, ensure it adheres to web accessibility standards (such as WCAG).
  • Provide alternative text for images and keyboard navigation and ensure compatibility with screen readers.

Virtual Celebrations:

  • Consider hosting virtual celebrations or events that allow people to participate from the comfort of their homes.
  • Ensure the virtual platform is accessible to disabled individuals, providing features like closed captioning and compatibility with assistive technologies.
  • Remember to include brief self-descriptions for an accessible experience for all.

Inclusive Social Media Campaigns:

  • Create holiday-related social media content that is accessible to all. Use descriptive image captions, provide alt text for images, and use hashtags that promote inclusivity.

Accessible Decorations:

  • If you have physical locations decorated for the holidays, make sure the decorations don’t obstruct pathways so there is an accessible path of travel.

Accessible Events:

  • If hosting in-person events, ensure the house or venue and path of travel are barrier-free and accessible for disabled individuals – including parking, ramps, elevators, accessible restrooms, and designated wheelchair-accessible spaces.
  • Send notifications to attendees to contact the host or planner regarding access requirements.
  • Ensure that printed material is available in alternative formats for blind or low-vision individuals.
  • Provide assistive listening devices, real-time captioners, and sign language Interpreters for d/Deaf or hard-of-hearing individuals.

Content Creation:

  • Use Camel-Case for hashtags, don’t overuse emojis, and don’t substitute text with an emoji.
  • Enable Closed Captions and provide CART (real-time captioning) for reliable captions.
  • Provide accessible print media using large print or Braille, numbered and bulleted lists, and agenda or meeting materials in advance when possible.
  • Add alt-text to describe images.

Three white women holding red and white balloons dressed in red, white, and green are sitting on a sofa in front of a brick wall.

 

Accessible Entertainment Spaces: Performances, Live Events & Award Shows

  • Advocate for entertainment spaces such as concert venues, prioritizing accessibility and ensuring venues are accessible.
  • Having dedicated employees to assist individuals with access requirements, as well as having all staff trained in best practices in accessible guest services, is the goal.
  • Relaxed performances and sensory-friendly performances with dimmed lighting.
  • Ensure designated and accessible seating that has an unobstructed view.
  • Provide seating for caregivers or personal care attendants.
  • Hiring on-set accessibility coordinators for productions and studios highlights a commitment to compliance and proactive measures to create accessible workplaces and services in front of the camera and behind the lens.

Accessible Gift Ideas and Holiday Shopping:

  • Explore accessible gift ideas that consider diverse preferences. People appreciate these kinds of thoughtful gestures.
  • Online gift certificates for various businesses include books, media, clothing, food, healthcare, and wellness goods.
  • Consider purchasing music subscriptions and gifts with accessible, innovative technology such as hand-held motion-controlled music mixers, fitness trackers, headphones, adaptive remotes, or gaming tools.
  • Consider adaptive makeup and hair-care tools for individuals experiencing fatigue and chronic pain.
  • An excellent website for adaptive gifts year-round is FFlora.
  • Support businesses prioritizing accessibility and choosing products and services catering to diverse customers.
  • Train all employees on assisting customers with access requirements.

 A Black woman wearing a black and white polka-dotted dress stands beside a decorated Christmas tree.As we revel in the joyous moments of the holidays, my call to action encourages us to carry this spirit of inclusivity into the rest of the year. Doing so enhances the festive season and contributes to a world where respect, understanding, and empathy become year-round traditions.

May the warmth and kindness experienced during these holidays remind us that creating an accessible, inclusive, and psychologically safe environment is a gift we can give one another daily.

Andrea Jennings, M.Mus., is a Disability & Accessibility Strategist, actress, and filmmaker passionate about music, law, and entertainment. Her journey led to creating Shifting Creative Paradigms – Leveling The Playing Field® Multi-Media Production Co., advocating for social justice through Disability culture, film, music, and art. Her work has graced prestigious platforms like Park Avenue Armory, The Metropolitan Museum of Art, and Rutgers University. Her work is also recognized in Forbes, Billboard Magazine, The Atlantic Magazine, The Hollywood Reporter, and The New York Times.

 

How Easterseals Helped Support My Family

Easterseals logo. Collage of disabled people of different ages

By Dom Evans

I’m not sure of the first time I remember hearing about Easterseals, but I know I was young. I was a child, who had recently been diagnosed with a neuromuscular disability.

It may have actually been before my diagnosis was confirmed. My father had recently been laid off from his job as a tool and die maker. He and my mother were both in school, as he had returned to a community college to get a degree in accounting, hoping for a better job.

It was a very tough time for my family, monetarily speaking. I needed things like orthopedic shoes, leg braces, and various other equipment to help with physical therapy and other things that kept me mobile.

My father, meanwhile, was deaf. Even today, most insurances won’t pay for hearing aids and, without hearing aids, my father was completely unable to hear.

Photo from the 70s. Man with a hearing aid holding a baby, sitting by a piano

Dom and their father

I don’t exactly know my father’s story, but I think he became deaf in his teenage years or early adulthood. He didn’t really talk about it, and I feel like it was somewhat shameful for him. I do know he was not born deaf, or he could at least hear some when he was a child.

As such, he had no connection with the Deaf community. He could hear a bit (though not well) with hearing aids, but otherwise he would be unable to hear or communicate with anyone. Taking out his hearing aids meant the communication was always one-sided as we could not communicate with him very well or easily.

I know that he got his hearing aids paid for by Easterseals, allowing him to continue to go to school and eventually work. I wish my father was able to learn ASL and also develop a sense of pride in who he was, but unfortunately, he was born in the 1930s, and it was seen as a deficit when he lost his hearing.

I was told when I was young that his hearing loss had a genetic component to it and that I had inherited it, but on a smaller scale. I’ve always struggled with hearing and used to fail all my hearing tests. Even today, people constantly have to repeat themselves and I struggle to hear things, especially when people whisper or speak quietly.

While I never needed hearing aids or anything like that, all of the testing that both my father and I received were paid for by Easterseals. Because of my hearing loss, I had to go for regular hearing testing to make sure my hearing was not getting worse.

I was involved with more than one disability-related organization, and I have to say that Easterseals was a much better experience than the other organizations.

I didn’t have to do any tricks, perform any services or do anything special to get help for what I needed health care-wise from Easterseals. The other organizations wanted more of me. Easterseals just cared that I had a need that needed to be filled and they gave me the resources that my family needed so that we were accommodated and had the equipment we needed.

Just by being serviced by Easterseals, both my father and I were invited to the Easterseals holiday parties for the years when I was getting Easterseals services. They would give us presents, something that I was always grateful for because my family was not rich – so being a kid, I loved that. 

Dom with their father and familyI’m certain I went to a few of their parties and it didn’t feel like pandering or like the organization felt sorry for me or my family. It felt like an organization that genuinely wanted to help. 

When I was getting services from Easterseals in the late 80s/early 90s, it was a very confusing time for me. I had been through a lot of medical tests as they had tried to determine what my disability was. It wasn’t until I was five years old that they really figured it out. My family was really really struggling financially, and Easterseals helped lift the medical burden from my family.

I only stopped getting services from Easterseals after my father got a job with the state as a tax commissioner agent, auditing large companies like Campbell Soup. His state insurance paid for my medical needs.

After I stopped receiving services, my father still got support from Easterseals with all of his needs surrounding his hearing loss. I know for a fact that he would not have been able to get his hearing aids without Easterseals, and that would’ve created barriers that he would not have been able to overcome to be able to work and live independently. That’s the kind of thing that Easterseals gave to him.

My father did not have an understanding about disability pride or even that he could consider himself disabled. There was always a level of uneasiness surrounding his deafness. I believe he also experienced a lot of internalized ableism/audism, but because of the way Easterseals was willing to help us – no strings attached, no promoting us in negative ways, and not owing them any favors – I believe he was better able to accept their help and was very grateful for it. 

Easterseals has always been about helping disabled people. They help by providing accommodations. They help by removing the financial burden that many of us disabled people face. They offer families hope and support. There are a lot of organizations that claim to help disabled people in this way, but they are not doing nearly what Easterseals has been doing for over 100 years.

As I’ve gotten older, I’ve been proud to see that Easterseals continues to want to help move the needle forward when it comes to access and inclusion for disabled people. While a lot of nonprofits say they want to help us, few of them are actually doing so. I’m thankful for all that Easterseals has done for me and my family, and I’m grateful that they keep wanting to help push the needle forward and make the world a little better for all of us.

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.

 

The Music Man – Composing and Playing for the Marine Corp Band

Collage of veterans

By Grant Boyer

Countless people have joined the armed forces and taken part in defending the nation and its ideals on land, in the air, and on sea. They have taken part in attacks, flown dangerous missions, and patrolled waters  ̶  however, not as many have had music as their primary mission.

A man in a US Marine dress uniform, holding a trombone. The photo is old.Doug Finke, a trombonist of 23, was drafted in 1965 and remained in service until 1967. He knew from the beginning that he wanted to play music while in the service, and chose to pursue the Marine Corps’ music program. When he finally had the chance to try out following boot camp, he was promptly given a trombone to use and music to play. At the end of the difficult audition, they said, “okay, you’re in.”

“What does that mean?” Doug asked, not yet understanding the scope and sudden nature of what they said.

“You’ve been accepted into the Marine Corps band program, and you’ll be given an assignment,” they replied.

“So, that was cool. It was stressful, but it was cool,” Doug said of his experience.

He joined the 3rd Marine Airwing Band, stationed at El Toro, California. Every base had its own band, and California alone had five or six bands. While in the field band, Doug started writing arrangements for it, mostly show tunes in a military style that used military band instrumentation. His arrangements included “Strike up the Band” and other Gershwin tunes, or simply music that everybody at the time would know.

“A warrant officer was in charge of the band, and gunnery sergeants or master sergeants would do the field directing. I had discussions with them about playing better music, and they said it was more about the precision of marching. I said, ‘I don’t think so. I think that when people hear really good music, they don’t know why but they like it better.’ So they let me write, we did these shows. And to my gratification, the directors of Army, Navy, and Air Force bands came to our director and said, ‘where did you get those arrangements?’” Doug explained.

It should be noted that he had to hand-write all of his music, which required very good handwriting. Doug took pride in his ability to write clear and accurate music, one of the elements of his arrangements’ success.

Doug and three other bandmates stand in a line.

His handwriting was the reason he was eventually invited to join “The President’s Own” United States Marine Band as the director’s copyist. Within the last three years, Doug found out that he would have been working with Sammy Nestico, a very famous composer and arranger who was directing the “President’s Own” Marine Band at the time. Nestico had previously directed and arranged for the United States Air Force Band, in which he created the famous Airmen of Note jazz ensemble. Nestico is also well known for writing arrangements for the Count Basie Orchestra and is also a trombonist.

Doug ended up turning down the opportunity, “which is another story,” he says. At the time he was invited, he was married and had a child and wanted to be present for his family rather than constantly traveling with the band. On occasion, he’s pondered how his life would have been different but doesn’t regret the choice he made.

Life in general in the Marine Corps was busy and direct, with no moment of the day being wasted.

An old plane with Marines standing around it. The photo is in color, but from the 60s “At 7 or 7:30 in the morning, we would march in uniform from the barracks to the main flagpole on the base to raise the colors. We would play while marching down the streets, and when we arrived at headquarters, we would play a bugle call to attention and “The Star-Spangled Banner”; and then we would march back, playing marches again.

The rest of the day was made up of two different things — we would either rehearse as a concert or jazz band, or we would go out into the public to play in a parade or play a concert. In ’66 and ’67, we were off base playing in something nearly every day of the year. One year, we went 178 days without any time off. All of that was part of a goodwill campaign to the public, to give them a good feeling about being in the Vietnam war, that it was OK. The idea was to make them feel good about ‘doing what we had to do’,” Doug explained.

Sometimes playing took the band to different parts of the country, such as Salt Lake City to play in a roughly five-mile-long parade, or an annual military-centric show in Seattle. Doug’s arrangements were also played at the Seattle show, which helped them garner attention. The band’s mode of air transport was always a cargo C-130 with no seats of any kind (“typical Marine Corps”, says Doug), requiring the band members to simply find a spot on the floor and get into a good conversation to pass the time.

Back to the Vietnam War, Doug got orders to go to Vietnam twice. Bands went to Vietnam too and, of course, band members would fight as well if necessary. This was obviously worrisome to him given that he had a daughter by this point, but his commanding officer said, “don’t worry about it, I’m getting your orders changed.”

A new photo of Doug and Grant playing trombones together at a concert

Doug and Grant

“I was principal trombone player for those two years [with the band] and he didn’t want to lose me, so I’m grateful for that.”

When asked what the proudest moment he had in the band was, Doug couldn’t name just one thing, but remembered the excellence of the band’s performance, time and again. “The trombone section was amazing — we were proud, we were loud, and we were in lock step. The formation was always perfect or near perfect. That sort of performance made me proud.”

His time in the Marines and the band taught him discipline in life, helping him to live on a schedule, “and to always do the best job you can. Make commitments, keep commitments, keep your shoes shined, and a crease in your pants.”

Grant received his creative writing degree from the University of Indianapolis in 2021, where he also played the trombone in several bands while attending. Grant has since become increasingly interested in writing the personal stories of friends and family. Grant’s grandfather Doug was a mentor and positive influence through his school years as a trombonist. They have played together in a long list of band performances, sharing the love for the trombone.

 

Supporting Our Veterans: Mental Health, Employment, and Housing

Collage of veterans

Editor’s Note: Many thanks to Jon Horowitch, President & CEO of Easterseals DC MD VA, for providing this information.

For some veterans – though certainly not all – the transition to civilian life can present challenges. For instance, unemployment (or underemployment) can lead to anxiety – a situation experienced by veterans and civilians alike. In the words of Deborah Mullen, military family advocate and the spouse of Adm. Michael Mullen (Ret.), 17th Chairman of the Joint Chiefs of Staff, “veterans want what every other American wants: a good job, one for their spouse or partner, a good education for their children, and a place to call home.” Mullen also serves as an Honorary Board member of Easterseals DC MD VA. 

For veterans who need assistance readjusting, the challenges can be simple or complex. The first step toward resolution should be understanding the root causes of the situation and a coordinated, holistic approach to support can make that discovery process more effective. For instance, a recently transitioned service member may need assistance securing his first civilian job, while he is also managing unseen injuries. Helping that veteran find employment without also helping him heal psychologically lowers his chance of beginning a successful, long-term civilian career. Easterseals DC MD VA, which offers extensive programming for veterans and military families, has a Homeless Veterans Reintegration Program. This initiative works with veterans experiencing or at risk of homelessness and prepares them for long-term employment while also addressing complex transitional needs. They help clients enroll in local support services to address legal, housing, health, and other concerns, and stay with their clients every step of the way to ensure a successful transition. 

Supporting Our Veterans: Mental Health, Employment, and HousingMembers of the military are part of a community, depending upon one another to achieve their collective mission. When leaving service, the loss of community can be one of the biggest adjustments that the veteran must make, so finding support from a new community can be immensely helpful. Easterseals recognizes the value of those connections and can help introduce military families to others who share their experiences. Easterseals’ Respite Programs, for example, help ease the challenges of being or caring for a wounded warrior, veteran, or active-duty military while also looking after children and promote connections with other caregivers. As a result, military families enjoy the emotional and social support that comes from those relationships. 

Additionally, a veteran’s mental health closely intertwines with their ability to manage civilian employment. Successfully coping with the unseen effects of service brings stability to a person’s outlook and relationships, making it possible to begin a rewarding, long-term career. The economic benefits of that stability not only bring pride and the ability to provide for one’s family, but also make it possible to own a home. 

Kendra Davenport, President and CEO of Easterseals, adds: “So much of a veteran’s identity is tied throughout their active-duty service to the military branch in which they serve. While on active duty, they are part of something important and part of a very tightly-knit work community that not only supports them but supports their families as well. When they separate from the military, they leave that community and they leave behind the support and solidarity and shared values, work ethic and purpose. Finding new employment can be a challenge and it is compounded by the fact that a job checks just one of the many boxes they must refill. It often fails to provide the support and strong sense of belonging veterans recognize and often feel while they are on active duty.  The void can create mental stress and anxiety that can lead to depression. For all these reasons and more, Easterseals places tremendous importance on not only helping veterans secure meaningful jobs but also on their mental health.” 

Visit our website to learn more about how Easterseals supports veterans. You can also tune in to Soldier for Life, a podcast that spotlights Easterseals DC MD VA services for transitioning veterans. 

 

The Reality of Employment for Wheelchair-Using Disabled People

National Disability Employment Awareness Month. Two disabled people using laptops

By Dom Evans

I have a friend who is in her 40s, who just got their first permanent teaching job within the last year.

It’s great they are finally teaching in an elementary school like they always wanted. They have had their master’s degree in education for around a decade, but they were hoping to find a permanent job at one of the schools in the area where they live.

My friend is a long-term power wheelchair user. Now, working as an elementary school teacher, I have to wonder what role their visible disability has played in all of this.

My friend got hired amid record lows for employment.

There is a dire need for teachers and, until they were at their most dire, they still wouldn’t consider a highly trained, physically disabled, wheelchair-using teacher.

A person wearing a red sweater using a wheelchair and typing on a laptopSure, my friend was able to work as a substitute teacher and also held down other jobs, but they never stopped holding out for a teaching position — a job I personally believe was withheld from them because of their visible disability.

Until the 1970s, many states around the country had what were known as the “ugly laws,” which made it illegal for people with visible disabilities to appear in public.

You may have heard about disabled people being kept in family back rooms. Up until recently, and even today in some families, visibly-disabled people (those of us particularly with disabilities that seem unsightly to those who are not disabled) are the family’s shame/secret. Sometimes these individuals were/are literally hidden away to protect the family’s “image.”

During the disability rights movement of the 1960s, it was these highly visible, often wheelchair-using individuals who started demanding we be allowed to have access to not only exist in public, but to schooling, employment, education, love and relationships, housing, and so much more.

Sadly, society has not gotten to a place where the vast majority of people are comfortable with visible disabilities. Part of this comes from a fear of becoming disabled themselves.

It’s a cyclical thing that feeds itself. Nondisabled people are afraid of becoming disabled, so media is created that depicts this fear. The media that depicts this fear feeds the misconception further because that’s what people see and think this is what being disabled is like.

This is part of why representation of disability matters and is so important. We must have accurate information to prevent more mistreatment. We can see the connection between causation based on lack of proper representation and continued mistreatment and exclusion of wheelchair-using disabled folks.

We are still at a place where seeing disability makes nondisabled people uncomfortable.

It is still difficult for many disabled people to leave their homes without getting inundated with comments about their appearance, questions about the validity of them leaving their house, and/or having access to the outside world, and even open proselytizing.

For some visibly disabled people, this is an experience they have every time they leave the house. They can’t go anywhere without being gawked at, laughed at, talked about, pointed at, or called names.

This same principle of mistreatment, exclusion, and othering extends throughout every aspect of the disabled person’s life, including access to employment. It creates a system where wheelchair-using disabled people are not even considered for jobs they are often overqualified to have.

Unfortunately, it’s hard to prove that discrimination is occurring at all. Employers don’t have to disclose why they won’t hire someone. It is essentially the employer’s word against the potential employee, and if there’s no clear verbiage that distinguishes the reason was because of a disability, the disabled person has no recourse.

Instead, we know it’s occurring because physically-disabled wheelchair users continue to have these experiences over and over in nearly every field. We can look at the employment rate of disabled people and see that something is happening to keep disabled folks from getting jobs.

A person wearing business attire and using a wheelchair, going down a hallway in an office buildingIt’s been known for years that only about 20% of disabled people are employed compared to about 65% of nondisabled people. The rate of unemployment for disabled people versus nondisabled people is also nearly double.

Sure, there are other factors that contribute.

If you depend on things like Social Security Disability, Medicaid, or other programs, it may actually be disadvantageous to get a job. These programs are means-based, and if you make too much money, you can lose these often life-saving and essential services. This often means that disabled people who depend on them for survival have no choice but to live in poverty.

Job prospects are already hard, but disincentivizing disabled people from making money greatly reduces the kind of jobs disabled people can have anyway. So when a disabled person is willing and/or able to take the risk of having a job that can actually pay them money, to have that job denied because the individual is disabled is highly distressing and not fair.

Back to my friend though. They clearly could’ve had a teaching job long before they got one. They are in their early 40s like I am and have been searching for a job since they were in their 20s.

Sure, they might’ve limited their prospects by wanting a job that wasn’t too far from home, but teaching jobs have been in high demand for a while, and it really feels like the only reason they got their job is because the school was desperate.

Don’t get me wrong — I’m incredibly happy for my friend. They’ve been dreaming of a job like this for ages. But I can’t help but feel like it’s a bit exploitive to hire disabled people when nondisabled people refuse to work for you because of things like lack of pay, lack of protection, and possible harm as a result of gun violence — something teachers must consider more and more these days.

This is not my only friend in this situation either. I know multiple disabled people that have high-level degrees in things like science, education, politics, the arts, and medicine, and nearly all of them that are power wheelchair users have struggled to find any type of employment despite their level of education.

Does my friend deserve the job? They deserved the job once they were qualified. So why did it take all of the non-disabled teachers quitting for them to be seen as valuable enough to hire in the first place? That’s the question we must be asking when it comes to disability and employability.

Disabled people are often natural problem solvers. We often have unique skills that nondisabled people don’t have. We often have talents and abilities that people don’t even consider because they dismiss us because of our disabilities. Getting the chance to show everything we have to offer remains elusive.

Employers need to consider disabled people as viable contributors to their businesses. As physically disabled wheelchair users, many of us are living longer. Many of us are going to school and want to work. We deserve the chance to try.

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.

 

Bridging the Tech Divide: IT Employment in Deaf and Hard-of-Hearing Communities

National Disability Employment Awareness Month. Two disabled people using laptops

By Crom Saunders

As Americans watch the rise and fall of our economy under different administrations in the White House, employment remains a vital issue to Americans: the ability to live and support oneself at least, if not others in addition. While this concerns people of all ages and in any situation that necessitates earning income, there are certain communities that face additional challenges in finding jobs that pay sufficient wages for the work done. The well-documented glass ceiling for women, and the discriminatory practices in hiring (or not) of people of color and people with disabilities. One community in particular that has consistently experienced underemployment, both in a scarcity of job opportunities and limited growth or promotion options in the workplace, is the Deaf and Hard-of-Hearing (DHH) community.

While DHH employees and would-be employees are afforded some degree of legal protection and/or recourse, due in part to laws such as the Americans with Disabilities Act, the Rehabilitation Act, or the Civil Service Reform Act, discriminatory practices while interviewing and screening applicants for a position are notoriously hard to prove. DHH individuals also vary widely in their ability to self-advocate, including knowledge of laws and accommodation options. Employers often see the accommodations requested by many DHH workers to be a financial burden, and therefore seek ways to work around those accommodations, often to the disappointment and frustration of DHH employees.

Crom Saunders. A bald man wearing a purple dress shirt, smiling

Crom Saunders

Historically, DHH people have found greater success in job environments with a greater degree of manual labor and less requirement of higher education, besides the sheltered world of academia. For example, in the late 19th century through the early 20th century, a very profitable field for DHH workers was the printing industry. DHH people exhibited great accuracy and speed in typesetting faster than most of their hearing counterparts, thanks to stronger manual dexterity, and often, a higher literacy level than their hearing co-workers. The main reason behind this was during this era of the Industrial Revolution, many hearing people did not complete much secondary or higher education, since they could find apprenticeship and employment at any age. DHH students, on the other hand, often finished high school and went on to college, since many places of employment showed considerable reluctance in hiring people who seemingly brought their own communication barriers to the workplace. In the printing industry, however, DHH employees only had to set the type and images for stories already written and documented by journalists, illustrators, and photographers. Some of these DHH employees learned enough about the entire trade to eventually set up and start their own printing businesses, some to the point of also putting out their own newspapers written for and about the DHH community — something quite absent at the time in American society.

Today, this combination of education, training, initiative, and desire to be a contributing member of society still manifests itself in the DHH community. The field that possibly shows the most potential for leveling the playing field in terms of pay, hiring based on skills and knowledge, most likely the most attractive feature for employers and a reduced need for interpreters to facilitate communication between employer and employee, is the field of computer programming.

Coding can be done remotely on one’s own schedule, and in today’s world of digital communication, a great deal of the work can be discussed and delegated via online communication — email and texts. There are also apps that enable spoken word to be converted into text. This fosters a work environment of greater independence for DHH employees with computer programming experience and expertise. Computer programming is a rapidly growing and developing career choice that will not fade into technological oblivion any time soon, with the global dependence and utility of digital and online technology in all aspects of life. This indicates a stable job opportunity with a wide variety of positions from IT staff to website design, and to developing software platforms, all of which DHH people have successfully made into careers, besides many other jobs within the field.

The potential for a self-sustaining cycle is here: technology has helped break down barriers for many people with disabilities, the DHH community being no exception. Those people in turn can develop and implement software and hardware designed to further inclusion of themselves and other members of the disabled communities. DHH computer programmers focus especially on software that increases communication facilitation between signers and non-signers and also software that incorporates American Sign Language (ASL), the preferred language of the majority of DHH individuals.

A woman with long dark hair using ASL in front of a laptopIt is also worth noting that the largest campus focusing on STEM education for DHH students, The National Technical Institute for the Deaf (NTID) housed at Rochester Institute of Technology offers a full bachelor’s degree in Information and Computing Studies, allowing DHH students to not only gain training and knowledge of computer programming, but also to obtain a degree — often a requirement for applying for employment at many businesses.

Beyond this, the number of Deaf-owned businesses and DHH freelancers has seen a rapid uptick in the last decade. Austin, Texas, is a strong example of this, currently being home to around thirty Deaf-owned businesses within the city limits alone. To run a business in today’s world requires the use of digital communication and business management software — requiring at the very least someone on staff who is handy with computers, and Deaf-owned businesses are more likely to hire DHH computer programmers.

However, available work in computer programming is of course not limited to Deaf-owned businesses. Any business in need of a computer programmer is a potential employer of a DHH coder, software engineer, or any of the myriad specialties in the field of computer programming. The barriers that can be present in far too many fields due to the level of everyday communication and interaction between the employers and employees are less prominent in a field that allows for individuals to work in their own space, and possibly at their own pace.

It is intriguing to think about how technology become so entrenched in our lives, from social interaction, to everyday tasks, to employment. There are of course concerns about the degree to which technology has embedded itself into our daily lifestyles, not to mention the newest digital boogeyman: AI. Yet the very thing that seems to threaten our humanity has afforded many people that have faced dehumanization and lack of inclusion in the human ecosphere, including the DHH community just that — a chance at being as human as anyone else.

Crom Saunders is the Director of the Def Studies BA degree program at Columbia College Chicago. He also travels internationally presenting workshops on sign language linguistics and translation, and performs improv and his one-person show, “Cromania!” His hobbies include translating Shakespeare into ASL and reading any book he can get his hands on.

To learn about employment services at Easterseals, visit our website.  

 

Disability Isn’t Scary, Ableism Is: Representation in Horror

Disability Isn't Scary, Ableism is. Text atop a spooky forest background

By Mids Meinberg

October is the time when the horror genre reigns supreme in the public consciousness. Classic horror films, spooky tv shows, and jump-scared filled video games take their place as the predominant media of the day. For disabled people, though, horror can be an uncomfortable genre. It has a history of poor portrayals of disabled people, as both monsters and victims. This blog will dig a bit into the missteps that these works often make, as well as highlight some horror media that actually handles topics surrounding disability better than most.

The use of disabled people as victims in horror is part of the broader trend of horror works victimizing marginalized people of all identities. In dealing with disability specifically, however, there is a tendency in works to have the character’s disability itself be the reason violence is inflicted on them. When a Black man dies first in a horror movie, the reason is seldom (outwardly at least) because he is Black. When a disabled person dies in a horror movie, their disability is presented as a weakness and as a flaw that allows for the killer to succeed more easily.

Indeed, there are many films where the central premise revolves around how the central character’s disability is the reason they are endangered in the first place. Doing so positions the disability itself as being as deadly as the killer, which is simply not true or realistic. A wheelchair user unable to escape from an axe user because the only egress is a flight of stairs is not killed because they’re a wheelchair user, but rather because there is a lack of accessible access to safety.

Abandoned wheelchair in a hospital This is not to say that disabled people cannot be victims at all in horror movies. Giving them an undue degree of safety from threats that are harming the abled characters serves to infantilize disabled people, by giving them the same protections as children. Instead, it is important for disabled characters to have the same degree of agency and danger as their abled counterparts, to allow them to participate fully in the story.

More troubling than the portrayal of disabled people as victims, though, is the portrayal of disabled people as monsters. Some of these portrayals come from a reversal of the infantilization of disabled people. They work on the audience’s presumed belief that disabled people are inherently virtuous or innocent, and thus it being a shock when it turns out that they’re capable of deep acts of evil. Of incidents of monstrous disabled people, these are perhaps the best options available, as it simply puts them on the same level as any nondisabled person, albeit in a way that relies on ableist notions in order to be shocking.

Other works rely on far less pleasant ways to present disabled people as monsters. Many horror monsters have their monstrosity displayed via facial differences or other forms of visible disabilities. They rely on the deeply ableist notion that evil will make itself manifest in the body. The belief that someone who looks different should be shunned is one that has been a crucial part of ableism for untold generations, and its continued presence in media simply allows that belief to continue on unabated.

There is also the prevalence of mentally ill antagonists in horror works. The “psycho” killer (sometimes diagnosed with sociopathy but sometimes left as an undiagnosed “crazy”) is far more common in fiction than they have ever been in real life. Indeed, the truth is that mentally ill people are far more likely to be the victims of violence than to be the perpetrators of it, according to the Illinois Criminal Justice Information Authority. Yet horror works continue to present mentally ill people as a source of danger and unease. While there has been a slowly reducing stigma towards mental illness in the real world, there has been little to no improvement in the perception of people with mental illnesses seen as more dangerous, like borderline personality disorder or narcissism. 

These portrayals make the general public less inclined to view disabled people positively, whether their disability is visible, invisible, or both. Even when the influence is not conscious, the pernicious and ubiquitous nature of the presentation of disability in these works of fiction have an effect on how the people viewing them think. Disabled people working within communities of disabled people can see beyond the ableist messaging of these works, but disabled people bereft of that support can find themselves applying these negative beliefs to themselves.

Fortunately, there are some works that handle these sensitive topics exceptionally well.

Screenshot from Freaks - a group of multiple disabled people at someone's bedside

Freaks, 1932

The oldest example is the 1932 film Freaks. While the name is off-putting, this is part of the overall effect it is aiming for; plus, the movie is almost a century old, so some degree of outdated ideas are going to be present despite it aging well overall. The movie centers around disabled circus performers, the members of the eponymous “freak show.” The movie flips the assumptions of the audience of the time, though, by having these performers be presented as people who are generally good, who find support in their community together and are willing to accept others within their number. The true villains of the film are abled, traditionally attractive people who seek to manipulate and harm the members of the troupe in order to gain access to the wealth that one of the performers came into. The film works mostly by reversing the expectations of the audience, but in presenting the exact opposite of those expectations, it creates a space for genuine humanity.

Saw VI is an interesting example. Series villain Jigsaw is a man dying from cancer, who wishes to put his philosophy into the world via horrendous violence before his death. While by and large this is a presentation of a monstrous disabled person, in Saw VI Jigsaw turns his attention not onto the usual cast of people living on the margins but instead onto a far more deserving target: a health insurance executive. Indeed, much of the film’s focus is on how the insurance industry dehumanizes those who are most in need, making the executive into the true villain of the movie, while Jigsaw is portrayed as simply excessive rather than evil.

In terms of horror video games, there are vanishingly few examples that don’t fall into the worst tropes of movies. The most notable counter-example is Hellblade: Senua’s Sacrifice, a game centered around the titular Senua as she deals with terrifying monsters inspired by Celtic and Norse mythology. Senua also experiences consistent auditory hallucinations, which she interprets as the voices of the gods, directing her in her Orphic struggles. Notably, her hallucinations are not presented as a source of terror, but instead as simply a part of her being, and something that she views as integral to her existence. The creators of the game worked extensively with real people who have hallucinations in order to present Senua’s character with authenticity and compassion.

Video game character Senua, a woman wearing Viking attire and with red face paint

Senua from Hellblade 2

There have been relatively few horror movies made by disabled people. The most interesting one that showed up in my research is 1975’s Deafula. While the plot is a fairly standard vampire story, it is notable for being written and directed by a Deaf person, and starring an entirely Deaf cast — it is the first American Sign Language movie ever made. The lesson to take from both Deafula and Hellblade is that the best portrayals of disability in horror (and in any genre) require disabled people to be part of the process from the beginning.

Disabled people face horror far too often in their lives. This horror does not come from their disability, not from this essential part of themselves. This horror comes from ableism and the harm it does, in ways large and small, to the lives they live. Let us work together to create fiction that reflects this truth, this reality, rather than playing into outdated tropes and stereotypes.

If you’re interested in joining more conversations around disability in horror video games specifically, tune in October 26 to the ES Gaming Halloween Streamathon where the stream team will be playing and discussing horror games all day!

Mids Meinberg is a writer and game designer working out of New Jersey. They have an AA in Creative Writing from Brookdale Community College.