Loving Conversations

By Dom Evans

Better representation of disability is a major key to gaining acceptance for us.

FULL STOP. 

Read that again. 

When representation of disabled bodies and characters is done authentically and respectfully, disabled people are treated better in society. That’s just a fact.

This is why my one wish for the holidays is to see (and hopefully create) better representation for all disabled communities.

As someone who’s been writing about and researching disability representation on television, in movies, video games, and various other forms of media for at least the last two decades, I believe that the answer to making the world better for disabled people starts with portraying us as something more than objects of pity, curiosity, or disgust. 

I believe that our inclusion starts with casting actual disabled people (actors) to play ourselves. We are not helped by nondisabled people who don’t understand what it’s like to be us, and they often either feel sorry for us and/or they don’t want to be us. Not only does representation give disabled people jobs, but it gives disabled audience members a chance to see themselves. When you don’t see yourself represented, it’s easy to feel like you don’t belong.

My partner and I have released three studies into disability representation through our media monitoring group, FilmDis. What our research has shown has been quite interesting, and having done studies, we have started seeing patterns emerge that explain a lot of the harm we see being caused to actual disabled people and communities.

One notable thing we found is that the same communities remained the least represented throughout all three TV studies. That means for five years of television, since our studies primarily focus on disability representation on television, those communities were the Blind community, the D/deaf community, Little People, people with learning disabilities, and people with intellectual disabilities. And these were the least represented by a lot. We are talking so few characters you can count them on one or two hands, and they are supposed to represent entire disabled communities.

When there is representation of disability, the majority of characters are played by nondisabled actors. Even when we get disability stories, disabled actors don’t get cast, in most cases. In fact, we found that throughout the five years of our studies that at most, about 10% of disabled characters were played by actors who identify as disabled. This has dipped down in recent years to as low as 8%. That’s abysmal. It also means a lot of nondisabled people are portraying us when they don’t understand disability themselves.

The problem is cyclical. Bad representation feeds into new bad representation. As society learns how to interact and treat disabled people from badly represented disability portrayals, they learn how to interact with us inaccurately and usually with a sense of fear. A lot of media makers are afraid of becoming disabled and disability representation to them is about showing how disabled people are “other” and something that nondisabled people should be grateful not to be.

So, then new media makers watching and learning about disability from these awful portrayals recycle these harmful and inaccurate ideas about disability to create even more bad media and bad representation. So the bad portrayals feed the harmful treatment we experience, and the harmful treatment in turn feeds the creation of more harmful representations of disability.

This is why we need to get fresh blood in Hollywood, specifically disabled media makers and creatives. Most of the media about disability is not created by disabled people and that’s a major problem. If disabled people are not able to be the characters or help create the media, our voices are rendered useless and instead the voices of people that don’t understand what it is like to actually be disabled are the ones telling the world what it’s like to be disabled without really knowing if they are right or accurate in that.

Within this wish for better representation, I also wish for more stories that include disabled people and disability but are not only focused on disability. One of the more harmful aspects of most current disability representation is that disability is not just featured inaccurately. It’s often the entire story. Disability is used as a plot device in many stories featuring disabled people. The disabled characters are reduced to nothing more than their disabilities. Disabled people are more than just disabled. We have full and robust lives, where disability is just one aspect and part of our existence.

This is also the way that we get people to include disabled people, not only in Hollywood, but everywhere. When disabled people are represented as whole people with full lives, that is what those watching learn about disabled people. We are not just our disabilities. Our disabilities are important and should not be ignored, especially if there’s something dealing with a disability that is central to the storytelling, but they don’t need to be the end-all be-all of who we are as people. Too much media already represents us that way.

There are so many stories that could be told that include disabled characters. One of the most interesting things about the disabled community is that there are so many differences between us. There are so many differences between people, even within individual disability communities. The diversity of the disabled community is astounding and represents the kind of diversity that has the potential to change the way we as a society look at disabled people and disability in general.

There’s nothing wrong with being disabled, but you would not know that from how the media portrays disability. That needs to change and that’s really all I want for the holidays. That’s why my creative partner and I have turned towards creating television. We are taking our knowledge based on our studies, and putting it to practical use. Perhaps my wish will come true for better representation – a wish I hope for all of us. But perhaps I’m going to  be the one to help bring that change in Hollywood. Only time will tell. 

Here’s to a new year with the best disability representation to date. That is something I think we can all get behind!

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

By Grant Stoner

Early childhood development is crucial for parents, guardians, and children alike. From providing necessities like food and shelter, to imparting impactful lessons onto children, to ensuring children have quality healthcare, it can be difficult and stressful to consistently and confidently have the resources necessary and readily available. And for parents and guardians of disabled children especially, ensuring your child can have a safe and healthy start to their life can occasionally be a daunting task.

Thankfully, parents and guardians are not alone in their endeavors to care for children. Easterseals Rio Grande Valley offers families, parents, and guardians several resources and tools to help care for children during the early years of their life. Speaking with Easterseals, Executive Director of Easterseals Rio Grande Valley, Pattie Rosenlund, explores the services offered through Early Childhood programs, the importance of supporting children as they grow, and even shares a memorable success story of a client.

What Early Childhood Programs Offer

Caring for a child is often a complex and multifaceted task. Ensuring they have everything they need to successfully and confidently grow into young adults may seem easy on paper, but when factors like costs, available resources, and even disabilities are presented, outside assistance is understandably required. Rosenlund describes Early Childhood services that Easterseals Rio Grande Valley offers, noting that some families may only need one or two, but they have numerous options available.

“We do have an array of programs that really fall under the umbrella of early access and early childhood,” Rosenlund said. “I always consider the heart of our program is our Early Intervention program, the Part C program. In Texas, we do provide, in the natural environment, services. All our staff go into the home or other natural environments like childcare centers. That’s the heart of our programs.”

In Texas, Rosenlund explains that children can be denied Early Childhood Intervention services if the state deems them not eligible. To combat the lack of care when a denial occurs, Easterseals Rio Grande Valley created multiple services that fill the gap for families if needed. For Rosenlund, these programs are crucial to providing families, and more importantly, children, with the care and resources necessary for a healthy life.

“We looked to find other services and found funding through the state of Texas for Home Visiting programs,” Rosenlund said. “We have several model evidence-based programs. One is Parents as Teachers, and that services prenatal to the age of five, or when they start school. What we liked about that is it’s a safety net for [Early Childhood Intervention] if they’re not eligible, but still have concerns. We can use that as a program to continue to monitor [the child’s] development, but it’s also a way to engage families earlier.”

Support Along the Way

Prenatal care is undoubtably important, but a child’s development extends far beyond infancy. Milestones like beginning preschool and kindergarten can be overwhelming, and Rosenlund explains the importance of Easterseals Rio Grande Valley’s educational programs.

“We also have what’s called HIPPY program, it’s another evidence-based program that is Home Instruction for Parents of Preschool Youngsters,” Rosenlund said. “That is a program that families [use to] just really focus on school readiness. Parents as Teachers has more developmental learning in a broader scope. HIPPY is really focusing on school readiness. [HIPPY] serves two-year-olds, because kids are starting school so much earlier, all the way up to age five when they start school.”

Beyond the need to prepare children for school, Easterseals Rio Grande Valley also offers programs for children coming from abusive situations. Rosenlund explains that when a child is placed within Child Protective Services, Easterseals Rio Grande Valley can enter the environment and work with guardians or even parents to ensure the child is still receiving proper life skills and education. Rosenlund notes that the creation of this program is fundamentally different to others because of the nature of the home environment.

“Our Parents as Teachers program, although serves the age range, doesn’t necessarily meet the need, because it’s meeting parents where they are, and it’s much more collaborative,” Rosenlund said. “We needed something much more direct. We started the Safe Care program, and that is another evidence-based program that has three modules and works very direct with the parent on health, safety, and parent-child interaction. With that program, you do a preassessment and you really must demonstrate competency to move out of that unit and complete it.”

Success Stories

The goals of each program within Easterseals Rio Grande Valley are to ultimately ensure a child is set up for success and safety. Whether it’s learning crucial life skills or teaching parents and guardians how to best support their growing child, the resources that Easterseals Rio Grande Valley provides are beneficial beyond the first five years of a child’s life. And for one former client, Rosenlund acknowledges the importance and value of watching these programs succeed, especially at the annual dinner event honoring the community and humanitarians.

“The success really comes in the evening, when Matteo, our [Early Childhood Intervention] graduate came onto the stage to really talk about [the evening’s] experience,” Rosenlund said. “He was in our program only weeks after he was born, and he was born, unbeknownst to his parents, with multiple heart anomalies – over 10 to 15 holes in his heart. His eye hadn’t developed, and he had problems breathing. We were there with him as a baby. He took the stage and very confidently told his story. He wrote a poem about ‘I’m Just a Boy,’ and won the crowd over.”

Easterseals Rio Grande Valley is a shining example of the importance of educating and caring for young children. As they grow and learn crucial life skills, Easterseals Rio Grande Valley is there to aid everyone involved. Ensuring future generations have quality care and tools to aid them in adulthood is something Rosenlund is proud to promote and support.

“I think it’s so important to have these early education programs,” Rosenlund said. “I can say through all our programs, supporting parents, and building on their protective factors, we really want to help them develop their skills. Just to make sure that we’re there in that critical time that’s so important, not only for the child, but for the parent.”

To learn more about Easterseals Rio Grande Valley, visit their website or search for an Easterseals location near you.

By Alicia Krage

I’ve been blind practically from birth. I had vision for a month, so I obviously don’t remember it. So in my mind, while there are likely visual memories stored from my very early days of life, being blind is the only life I’ve known. That being said, I’m very used to advocating for all kinds of things — inclusion and accessibility, mostly.

This might sound a bit negative, but this world was not designed for people with disabilities. If it was, we’d always have audio description, wheelchair accessible entrances, ride-share drivers ready and willing to take passengers and their service animals, etc. But sadly, this is not the case. We have to find resources for audio-described content. We have to report ride-share drivers who won’t accept a guide dog. We have to make companies aware if their apps or websites don’t work with screen-reading software. I’ve gotten pretty used to that, and while it does frustrate me more often than not, it’s also a lesson in how to make others aware. I don’t think it’s always intentional. Not all companies have an accessibility team full of screen-reader users, for example, who know the inner workings of it all and how it should work with navigating apps and websites. So we educate. We inform people what our access needs are. And when we encounter people who may offer to help too much when we’re out and about, we tell them if we need help or not — and if we do, we tell them how to help us.

I don’t mind doing these things, because the only way for people to know how to accommodate us is for us to educate them, and it teaches us to be advocates of the disabled community. I think it also helps others become comfortable asking what we need, or how we do things, or how they can help. In the end, that’s all I want. All I want is for people to ask and educate.

I know that for some, I am the first blind person someone has ever encountered, whether it’s close friends I have now and we were once strangers, or ride-share drivers or even airport staff. It isn’t news to me, and I don’t mind. But sometimes I think that people are so nervous to ask us questions that they’d either rather (1) help in the way they think is appropriate, or (2) assume they know what we need or where we’re going. As frustrating as this can be to navigate, I’m learning that most people do have good intentions.

When I’m out and about in the world, I have a lot of respect for those who are very upfront about the fact that they don’t know how to guide me. It’s the same kind of comfort you get from talking to someone about something difficult and they say, “I don’t know what to say, but I’m listening.” I know that we’re all human, therefore we don’t always have the right answers or take the right actions, but being transparent about that is much appreciated, especially for me. People who just flat out ask, “How do I guide you?” Or, “I’m new to this, what would help you?” goes a long way. This happens to me a lot at Southwest Airlines when navigating airports. Often times, they’re used to assisting disabled passengers, but as we know, “disability” is a broad term and can mean all types of disabilities. They may have more experience with another disability that isn’t blindness. In these cases, I’ve had a lot of airport assistance just ask me how to help, and I think that’s so important for non-disabled people to do. You won’t know our access needs and accommodations if we don’t tell you. And in order for us to tell you, you have to ask. We don’t ever expect you to just know, but we do expect respect.

Unfortunately, this doesn’t always happen, and since relocating from my hometown and transitioning from suburban life to a big city, it sometimes feel like I’ve had to start from scratch. While Houston does seem to have a familiarity with blindness, I encounter people who get flustered and uncertain sometimes. Sometimes it’s as simple as correcting them (“I’ll take your arm,” when they take hold of my wrist to guide me), and other times it’s having to stand my ground a little. I’m working on finding the line between educating others politely and being assertive. Because a lack of knowledge is one thing, but disrespect is another whole other ball game that I feel like maybe I have been tolerating for too long. I think it’s okay to give people the benefit of the doubt sometimes, but not always.

Recently, I was going with a friend to get her nails done. She’s also blind. When we got off the bus and were heading toward the doors, someone approached us and asked if we needed help. My friend replied with a polite “no thank you.” After being asked two more times, there was a bit of a pause before I then heard her tell them that she didn’t need help and to please not touch her. Often times, people will put their hands on our shoulders to steer us, or often grab our arm to turn us in the right direction, even though we said no and even though we aren’t lost. Sometimes this happens without even asking if we need help, and as you can probably imagine, can be pretty startling. But watching her navigate this situation and using an assertive tone but not being overly aggressive made me realize that I have let others take away my autonomy for far too long. People won’t know what I need and what’s okay and what’s not okay unless I tell them. If I tell them that isn’t okay and educate them, this’ll benefit both of us.

I’m learning that maybe that’s how we advocate. Maybe we watch others. Maybe we see the way others conduct themselves and follow in their footsteps. At least, that’s how I want to learn. I want to surround myself with people who are good at educating others on their access needs but also being firm about their boundaries. And you can make this easier by just asking how to help. Ask and educate.

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.