How Easterseals Helped Support My Family

by Blog Writers

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.

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. 

I’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

by Blog Writers

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.

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.

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.

“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.”

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

by Blog Writers

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. 

Members 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

by Blog Writers

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.

Sure, 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.

It’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

by Blog Writers

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

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 19^th century through the early 20^th 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.

It 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

by Blog Writers

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.

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.

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.

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.

Because I Am Disabled: Autistic and Working on Films

by Blog Writers

by Scott Klumb

Because I am disabled, I have fought through the highs and lows of employment and have found my stride. After years of trying different jobs in customer service and mental health, I have ultimately found my place in filmmaking.

As an autistic adult, I have an extremely high attention span that others could only dream of. This is a common trait amongst autistic people, and when it comes to filmmaking, seeing the details is key. On set, I am able to keep track of nearly everything to make sure the film shoot goes smoothly and that the continuity of the footage all matches up. When there is no time to plan ahead, I can visualize a storyboard in my head with post production in mind and have every shot work together wonderfully. Finally, in editing for post production, being able to see every little detail is crucial, even if it’s down to one little frame. Over the years, my editing skills have stood out to many people and I have continued to perfect my craft. I enjoy editing most every subject matter and am very good at incorporating music into my stories.

One of my most significant accomplishments was winning Best Editor of the 2020 Easterseals Disability Film Challenge which led to many life-changing opportunities. The theme was documentary filmmaking, and I made a film called Autism Ability, highlighting my life as an autistic creator. I had five days to create the film from start to finish. At the time, I thought I would participate in the challenge to simply give myself something to do because it was during the pandemic. Before I knew it, out of approximately 90 submitted films, I stood out as the “Best Editor.” This led to meetings with higher ups at HBO who connected me with other award-winning video editors from around the country. Some of these editors worked on shows such as Westworld, Dexter, and others. I was also connected with a movie-trailer company because they saw the potential in my editing and thought I would be a great fit with editing movie and TV trailers for Hollywood.

Since the 2020 Easterseals Disability Film Challenge, I have continued making films that have been in nearly 50 film festivals around the world and won 12 awards. As my film resumé continues to grow, I receive more and more opportunities to work on feature films, short films, and freelance projects. My film career is not just limited to editing, as I have also been asked to be the director or cinematographer. Just like any industry, some of these opportunities have come to light and others have fallen through the cracks. But regardless, work leads to work and I am getting more opportunities these days than I ever have.

Because I am disabled, I have the ability to hyperfocus. The National Institutes of Health defines the term Hyperfocus as “a phenomenon that reflects one’s complete absorption in a task, to a point where a person appears to completely ignore or ‘tune out’ everything else.” Hyperfocus usually shows itself with me when I am editing films. As soon as I get in this state of mind, it feels like I am so focused that nothing stands in my way. 9 to 12 hours of intense editing feels like I have only been working for five or six hours. I am so grounded that I rarely leave my chair, and I work throughout that duration of time. Sure, hyperfocus can have its struggles, but I have learned to flip the script and look at the bright side of hyperfocus and how it has helped me throughout my film career.

Because I am disabled, I have gained a level of compassion and empathy towards working with disabled people which separates me from other filmmakers. I see how accommodations can lead to success. My clients and team have frequently told me they have never felt so comfortable with a filmmaker and that it alleviated all of their stress. Because of my empathy, I am able to focus on other people’s experiences along with the finished product, versus just caring about getting the job done and moving on. This allows me to work well with others and know how to pace the filming so that my clients, especially disabled people, are not overwhelmed during the process.

It has taken time to get to this point in my life and have the successes that I’ve had. But through perseverance, nearly anything is possible. I have had many other jobs as a disabled person including being a golf caddie and an adaptive ski instructor. Because of my high attention to detail when being a golf caddie, I could visualize exactly where the ball was going to go, which made me excellent at reading greens. I have held other jobs too, but have found that anything in customer service is extremely difficult for me because I struggle with handling social cues and communication. I have learned that holding a traditional job was out of the question for me and that I wanted to pursue my passion for film full time.

Don’t get me wrong — communication with clients as an autistic filmmaker can be difficult, but that’s why my friend who specializes in audio engineering also works for me at SMK Media. Not only do we work well together technically, he also helps me with emails and zoom meetings to alleviate the struggles I face with communication at times. In a sense, this is an accommodation for me. When clients work with my company, SMK Media, we require clear communication throughout the projects so that we are all on the same page and I can deliver the best product possible. Yes, I am disabled, but that does not mean I cannot have a successful career. I continue to keep my head up and work hard.

Because I am disabled, I am an award-winning filmmaker that people want to hire for their projects.

Scott Klumb is an award-winning filmmaker. He is a storyteller, cinematographer, and editor, knowledgeable in a wide array of film styles, including documentary, where he creates artistic films with meaningful stories to captivate his audience. Scott has found a passion for filmmaking, pursuing his talent both professionally and in his free time. Scott’s films have been in dozens of festivals across the world. The notoriety has been encouraging, but Scott’s primary focus is to encourage others and continue his growth as a filmmaker.

Working While Blind: Job Hunting and Inaccessible Hiring Practices

by Alicia Krage

by Alicia Krage

I graduated from Northern Illinois University in December 2019, getting a bachelor’s degree in human development and family sciences. I wasn’t quite sure what I wanted to do with it — my original plan was to go to graduate school and get my master’s to become a counselor, but I was already starting to get burnt out — but I was determined to figure it out. I loved my classes and was sure I could find something in my field, since it was broad enough that it would allow for many different opportunities. Even if my first job out of college didn’t align perfectly with my degree, I felt accomplished walking that stage and was ready to take on the world and tackle the job search.

A few weeks before the pandemic started, I got the opportunity to observe classes at the Chicago Lighthouse teaching Apple products to newly blind senior citizens. Though it didn’t line up with my college degree, I enjoyed it. As someone who’s been using VoiceOver on the iPhone for 10 years, I thought I’d be well qualified. So, after observing and even being able to help, I applied for a volunteer position which would give me the chance to test my skills before taking a paid position. And then we were quarantined.

My life was at somewhat of a standstill for a while. Even when quarantine was lifted, there were still some restrictions. I felt like I didn’t really get the opportunity to explore much of post-graduation life or put myself out there to see what type of job I’d be looking for.

A while later, after not having much luck with the vocational rehabilitation services, I reached out to my university’s career services department to see what advice they had. They encouraged me to create a profile on Indeed and LinkedIn and search for jobs there, since it would allow for searches like “remote” and “work from home.” Ultimately, I opted for Indeed. My short experience with LinkedIn proved to be more frustrating than anything else. The inaccessibility of both the app and website made me more stressed than I already was looking for jobs.

While accessible, my experience with Indeed was not the greatest in terms of luck. I applied for countless jobs, but was always met with one of the following outcomes: I didn’t meet all the qualifications, never heard back, or would get halfway through the application process before coming across an inaccessible portion and not getting further assistance or accommodations for the parts that I could not complete. A lot of the jobs required some sort of assessment as part of the application process, asking a series of questions that would often consist of different customer-service-like scenarios and giving multiple choices of how you’d handle said scenario. Sounds easy enough, but neither JAWS nor VoiceOver would read some of the questions. Some questions would involve pictures and wouldn’t let me skip to the next question. So, I’d reach out to the employer via Indeed, explain that I’m blind and could not complete the assessment, and would ask for accommodations so I’d get a fair shot. That was usually when I wouldn’t hear back. Or I’d get the very common and frustrating response of ,”can you have a sighted person help you?”

I don’t like to disclose my blindness if I can help it. I’d like the employer to see me as a qualified candidate for the position rather than immediately seeing me for my blindness, writing me off before they really get a chance to know me. But in some situations such as these, it was unavoidable. And yes, I could’ve had someone help me, but to me, that wasn’t the point. Their site wasn’t accessible, and I shouldn’t have to rely on someone sighted in my household (or even a sighted friend) to assist me. A company should be willing to accommodate. And if they weren’t willing, would I want to work for them anyway?

I even came across a job application for a blindness organization that wasn’t accessible. Some job applications would say that a driver’s license was required. Some asked if you had a license or reliable transportation. I didn’t have a license, obviously, but I did have reliable transportation. I got rejected.

Needless to say, I was very discouraged and started to lose my motivation. For a while, I wondered if it was maybe because of COVID. My life had been at a standstill for so long that I was almost accustomed to not doing much. One rejection after another didn’t help my motivation, either.

In early 2021, while visiting my partner in Houston for two weeks, I suddenly found myself wanting to visit all these places. The Lighthouse, their independent living center, anything that would allow me to network. It was a great feeling — suddenly feeling motivated again and wanting to work — but another thing occurred to me: maybe I needed a change of scenery. Maybe I needed something different. Maybe I needed to live somewhere with better transportation, better jobs, and just step out of my comfort zone and see if I liked living somewhere else. It was the first time I considered moving. But I was scared because Chicago is all I’ve ever known. So, I kept my job search to Illinois and looked remotely in Houston, not quite sure where I wanted to reside or even what I wanted out of life. I was stuck between wanting to take any job because it was there, and being particular with my job search because I did want to enjoy my first job out of college. I didn’t want just any old job. I wanted to be happy.

In 2022, I stayed in Houston for a month. I wanted to explore more of the city, meet new people, and do some networking. I also wanted to make sure my partner and I could live under the same roof. We’d been long distance for 2 years by then and going from seeing each other 4 times a year to every single day was a huge step. I wanted to make sure we could both handle it. I did a lot of networking, toured the Lighthouse of Houston, explored their transportation for people with disabilities, and noticed a different sense of community. There also seemed to be this sort of familiarity with blindness, like a lot of sighted people around us were completely unphased. And I decided — I wanted to relocate. I didn’t know when, but I wanted to. And I wasn’t comfortable moving without a job.

Alicia and her partner, Juan

I switched my job search location on Indeed to Houston, checking the box that said I’d relocate. When I wrote my cover letter, I mentioned that I’d even be willing to travel for the interview. Nothing seemed to work. All the jobs I was qualified for required residency, so I never heard back. It didn’t matter that I was willing to relocate or that I’d travel for the interview. What mattered was that I didn’t live there.

After a lot of conversing, my partner Juan suggested that maybe I move first and then look for a job. We both agreed that maybe it would be beneficial for me to take some time to get settled first anyway, rather than moving and immediately starting a job. For blind people, there’s a lot more that’s involved in moving, especially out of state, like signing up for the para-transit service and any vocational services you might need. Once that was all set up, I’d look for jobs. So that’s precisely what I did.

In March of 2023, I moved from my hometown and relocated to Houston. Four months later, I began volunteering at the Metropolitan MultiService Center. I worked at the front desk, answering calls and inquiries about the center and the services they provided. I then attended an Abilities Expo in August. Various companies were there, including Fable, a company that works with customers to make sure their products, websites, and apps are accessible and compatible with screen-reading software. They were doing on-sight interviews, so I did one, followed by an assessment a few weeks later via Zoom to test my assistive technology skills. And at the end of August, I was hired as an accessibility tester.

My job search has been a long road, but it feels good to finally find something I love and am passionate about. It’s different from the traditional 9-to-5 job, as it’s independent contract work, so there’s no set number of hours. The pay isn’t hourly, but it’s per meeting, but accessibility is something I’ve always been passionate about. Whenever I come across an inaccessible app or website, I would often think, “I wish they would actually have blind people test these to make sure they work.” And so here I am — I get to do just that.

I’ve been living here for six months now, and I’m much further along than I thought I would be. Stepping out of my comfort zone and attending the Expo really gave me such a wonderful opportunity. I learned a lot about doing what I love, even if it’s a little off course and not precisely what my degree says. And even if it’s not a traditional 9-to-5. There are a lot of nontraditional jobs out there, and I think that mindset could really help disabled people find work. If you expand your horizons beyond the societal expectations of what we should be doing, you could find a lot of great opportunities out there.

Alicia Krage is a graduate of Northern Illinois University. She relocated to Houston, Texas in early 2023 where she found a great community of people with disabilities. She has a passion for writing, centering her posts on advocacy, inclusivity, and relationships as a totally blind person.

Lights, Camera, Access: Employment in Media for People with Disabilities

by Beth Finke

Editor’s Note: In a previous blog, Allison Friedman shared her perspectives about the educational system from the disability community. She also shared some of her own experiences addressing common barriers that people within the Deaf community might face when it comes to education. Today’s blog focuses more on Allison’s interest in creative arts and some of her experiences regarding employment in the media industry for people with disabilities.

Can you tell us a little more about your background?

Allison: I’m a professor and a disability advocate, and I’ve always had a passion for the arts. I’m involved in several programs trying to spotlight different walks of life for different individuals. I’m very passionate, creative, and I work in the film industry, too. Growing up, I was always very passionate about acting. Ever since I was about six or seven years old I would put on costumes like my mermaid costume and would beg my brother (he’s deaf too) to dress up with me so we could put on a show for our parents. And that started everything — that’s where my creativity started and got me taking on all sorts of projects.

And as an adult now, too?

Allison: Yes! Now, as an adult, I’ve been involved in all sorts of projects and even entered the Easterseals Disability Film Challenge.

Oh, yes. the Disability Film Challenge. I saw your entry, it is amazing!

Allison: Thanks! Our first short film will be out in about a few days. We’ve already entered the finalists and nominees, and I’m going to be going to Sony Studios in California, a huge accomplishment in my career.

Wow, Sony Studios, that’s amazing. So, on that topic of the Disability Film Challenge, I saw your entry, They. It was great. What inspired the creation of that?

Allison: That’s a good question. So my team, along with my partner and a few friends, all got together and we were very interested in artificial intelligence, AI, and how it’s been a huge development right now, globally. So we ran with that theme. We produced a film that is loosely based on the movie Her, which was about a man’s journey with AI and how that love story developed. We decided to change it to They to be more inclusive and fit our non-binary audience…to be more applicable to today’s day and age. Our movie shows the world of AI with a Deaf connection to it and gives us a glimpse of what the future looks like with AI and the Deaf community. It’s a love story and it all came from that concept.

And it’s kind of taking that sci-fi, futuristic, “can we imagine what’s possible?” We should have more media out there about that. On that note, what drives your passion for TV, media, and theater? How does it connect to your education work that you mentioned earlier?

Allison: That’s another good question. TV, theater, media, that’s always been my passion. In college, I was involved in the media club, and that’s where I realized that I really enjoyed doing media content development, directing, things in that realm. And then from there, I’m a content creator myself, and I also do advocacy work, writing…and that led me to wanting to change the world’s perception.

That’s also where I connected to both passions with film. I am an ASL professor myself, and I do show short films in my classes to my students to show them what it’s like to look through Deaf eyes. And I’ll use media to help the students understand what it’s like to be Deaf, what it’s like to be in the Deaf community. So yeah, that’s pretty much it.

Bringing understanding to people through film — that’s one of the most powerful mediums. How has being part of the Deaf community contributed to your success?

Allison: Every child needs an advocate. So they need a community in order to thrive. I’m very thankful to my Deaf community and the signing community as well. Interpreters, CODAs. They really helped me thrive and become confident in who I am today.

I think that shows in our own existence today. We have our own language, our culture, our own community, a sense of belonging, and that’s what we’re working on now to show the world who we are. Without the Deaf community, I wouldn’t be here talking with you. They really helped me to thrive in my education and basically my everyday life, and I’m a huge advocate for that as well.

The IEP is the Foundation of a Disabled Student’s Education – This is Why They Are Necessary

by Blog Writers

by Dom Evans

The first time I realized I was different because I’m disabled was in kindergarten. It was 1986. I was five and a half, and the school I was attending didn’t want me to attend. The previous year, they had given me testing. I still remember being a teenager and discovering the test results in a drawer stating that my grade level was above first grade for everything but math (first-grade level for math), but because of my disability, they didn’t want to enroll me.

Dom as a child

“She is intelligent, but shy to answer questions. We fear she will be unable to handle the emotional toll of her deficits at school.”

I had an older brother who used to get extra worksheets from his teachers. During the summer, we would play school, and at four, I could add, subtract, multiply, and divide. I could also spell simple words. That didn’t matter to this small farm school in Northwest Ohio. I was “defective” to them, and they would try to prevent me from attending.

In finding this paperwork, I also learned that I had multiple IEPs. Unfortunately, I also discovered I didn’t have one every year. Did my mother not know that they were required yearly? Or did she just not care? I found IEPs for kindergarten, second, sixth, seventh, and ninth grades. This explained why I did not have accommodations.

I desperately needed my own aide who could help me with getting my coat on and off, getting my books, and generally being prepared for class. That did not happen. Instead, junior and senior year I shared my best friend’s aide since he also was a wheelchair user. His mother also must’ve been better at advocating for him since his needs were met. If he did not come to school though, I had no help or had to find a peer or teacher.

That was the school solution — have a peer do it for free. The problem is, I was not well-liked. I was picked on and tortured extensively. I’m even in a book about hate crimes outlining an incident that happened at my high school when I was in 10th grade. That’s how bad the bullying got. I was not exactly comfortable asking for help as a result of this. I did have two girls I trusted — one would sometimes help me get my coat on and off, so I didn’t have to wear my coat all day every day at school. Another would help me get my lunch tray. Other than that, though, I was on my own.

Unfortunately, I didn’t understand my own rights. I spent many days ill prepared for class because I never had the books I needed (could not reach my book bag or my locker). This meant my teachers often yelled at me and complained about me because I never had my books ready and often needed to interrupt class to get help. I also spent many days in my coat because I was too stubborn, afraid, or annoyed to ask someone to help me take it off.

When the peer who helped me with lunch was not in class, I sometimes didn’t eat. I would also skip class and sometimes sit in the elevator or in the accessible bathroom stall just so I didn’t have to go to class. Nobody ever noticed I was missing or said anything. It often felt like nobody cared if I was there or not, so if they didn’t care, why should I?

Luckily, I didn’t let this affect my grades, but I know many students who this would’ve happened to as well. I knew that I needed to get out of my current living situation and going off to college was the best way. That’s the thing that kept me motivated to keep working, but I have so many disabled friends I know that never tried because what was the point?

Having access to the bathroom was also a nightmare. Up until junior high, I could go myself, although there was a horrible bullying incident in second grade where a girl body slammed me with a door, and I flew across the bathroom and smashed into the metal trash can getting injured in the process. In junior high, I was forced to have my junior high classes at the high school (the two buildings were connected by a bridge) since the junior high building was not accessible.

The high school bathroom had accessible stalls, but I couldn’t use them. I would go from 6 a.m. until 3 p.m. without going. When I was in ninth grade, one of my teachers started helping me use the toilet so I didn’t have to hold it. It was a private situation the school didn’t even know about. This teacher went above and beyond to help. I am very grateful to her, but she was risking her job to help me.

Because I didn’t have regular IEPs, the school was ill-prepared to handle situations that affected my needs. In elementary school, there were battles over forcing me to run in gym, go ice skating, or participate in basketball — none of which I could do physically. In every case, it was always presented as my fault that I could not do these things. But by junior high and high school, I was no longer required to take gym at all thanks to a doctor’s note.

This also meant they could get away with kicking me off the school bus in fifth grade. The bus driver would grab my hand and pull me onto the bus, but that year he told me I was “too fat” and I was kicked off. My mother ended up having to take me to school at 6 a.m. before she went to work, and I would sit in a dark classroom and wait for my peers and teacher to arrive. By junior high, I was finally allowed to ride the short bus.

All the failures I saw at school were because my disabilities were not accommodated. This also set me up for a lack of understanding about how to accommodate myself in college where I had to advocate for myself. It’s been a huge learning curve about understanding how to access services, get what I need, and feel like I deserve accommodations. I believe the way my educational career started had a huge impact on all of this.

When considering schooling for yourself or your child, you must start with the IEP. Not having one led to many difficulties, and it also allowed the school, my teachers, and my peers to treat me in ways that no disabled person should ever be treated. Schools must understand that we are entitled to education. We are entitled to learn. We are entitled to accommodations and it’s their job to provide it. Setting a foundation for school that begins with discussions about how participation can occur is foundational to all of this.

Start with a good foundation at school and work from there — that’s the key. I didn’t have one and I’m still struggling to get over the effects of my poor education at 42. I hope for better for the next generation.

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.