If someone you know with intellectual disabilities has behaviors, they’re normal. Everyone has behaviors.

When I’m in pain, I might squint my eyes, grimace and curl up in a ball, or I might scream and yell out causing alarm and anxiety to those around me. If my head hurts, I can get grumpy and want to cover my head to block out light and my ears to block out sound, or maybe just move to a quiet room. The list goes on and on…

Behaviors as a Language

When we hear the term “behaviors” relating to people with intellectual and development disabilities (IDD), what is usually being referred to are adverse actions that cause some sort of harm to or disrupt the lives of the person with disabilities or others around them. What’s often missed is that these behaviors are rarely “just because someone has a disability and that’s just what they do.” With careful investigation and an understanding of the “language” of behaviors, a cause can often be found. And, even better, many of these causes do not need treatment with antipsychotic medications.

The less able we are to communicate with words, the more likely we are to communicate with gestures and actions. Have you ever found yourself using hand gestures when trying to communicate with someone from another country that doesn’t speak your language? Actions do sometimes speak louder than words. When you walk by someone and they have their head down, they’re holding their right cheek and have a grimace on their face, you may be on the right track assuming that they may be experiencing some sort of dental pain. Learning patterns of particular behaviors can often help pinpoint the cause of them.

Let’s talk about a few categories of fixable causes for adverse behaviors.

Environment

What do you do when you are hot, or cold? Do you remove your clothing? Would you “steal” someone’s blanket from them? You might ask first for the blanket, but what if you were not a person who communicates with words? What if you are in a room that’s really noisy and your head hurts? You’d likely want to move to a quieter place. But, how about if you could not move yourself or communicate to someone else what you are feeling? Might you yell and become agitated?

We should think about environmental causes of distress. Many of these can quickly be remedied and can make a difference in a person’s overall state of distress.

Sensory Issues

Some people have aversions to various sensations. One of mine is something cold touching my skin. When a person with cold hands touches me, it literally feels something like a shock that makes me recoil and even sometimes give an angry look and a gruff vocalization.

Could the feel of a particular clothing item be causing distress? Is there a repetitive sound that is exceedingly irritating to some and not to others? Could certain food textures feel repulsive to someone causing them to spit the food out? The answer to these is “yes.”

Look at what a person is experiencing in sight, sound, taste, touch, and smell when a particular challenging behavior presents itself.  It’s possible that you might identify a pattern that points to something that is easily avoidable.

Social

There are people we like being around and people we don’t. There may not be anything particularly “wrong” with that person at all. It’s just a preference. If we have no real choice about who is around us for hours at a time, we may express our preferences through agitation, resistance, self-abusive behavior or aggression toward others.

Learned Behavior

We should also consider the possibility that a person is doing something adverse because they learned that stopping that behavior will get them something desirable. “If you quiet down, I’ll give you a soda.” What is being taught here? I get noisy, then I quiet down, I get a soda.

Medical

As a physician, this is the area that causes me the most concern. To know that there are people who are in pain and are suffering with underlying health conditions that are not being diagnosed, or worse, inaccurately diagnosed as a psychiatric condition, is disturbing.  Clinicians simply MUST learn the language of behaviors and to see them as valid presenting symptoms of illness rather than just “something that people with disabilities do.”  There are a number of behaviors that can point to specific underlying health conditions that are too numerous to share here, but I want to give you a few examples:

• Spitting out food may be caused by pain when someone chews due to a dental abscess
• Becoming agitated and aggressive when heading towards the dining table may be a sign that a person experiences something painful before, during, or after eating such as reflux or aspiration
• Constantly putting their hands in their pants could be a sign of a genitourinary issue like a urinary tract infection or a yeast infection
• Screaming or resisting taking a bath could be a sign that something ‘bad” happens when their clothes come off such as abuse
• Waking up in the middle of the night screaming could be a sign of gastroesophageal reflux
• Becoming withdrawn, less alert, and less interactive could be a sign of constipation
• Being “hard to reach” could be associated with seizures
• Scratching and hitting one’s chest along with anxiousness could be a sign of chest pain

Learn More About Easily Treatable Behaviors

I’ve seen many people in my clinical career on psychotropic medications in an attempt to reduce some of these behaviors only to find later that there was an underlying, treatable cause. Imagine if you were experiencing painful acid reflux that caused agitation, could tell no one, and were then sedated so that you would no longer “act out.” You’d still have the painful reflux, you just might be too sleepy to try to let someone know through your behavior. We can do better than this! Educating families, supporters, and clinicians in the language of behavior of people with IDD can go a long way to relieving unnecessary suffering.

Take time to learn more about behavioral manifestations of underlying medical, environmental, social, and sensory conditions. Then, share what you learn with supporters of people with IDD and clinicians who treat them. It just might make a big difference in the quality of life of someone close to you who can speak for themselves.

Dr. Escudé is a board-certified fellow of the American Academy of Family Physicians and one of the few Fellows of the American Academy of Developmental Medicine. He is the president of Health Risk Screening, Inc. which specializes in risk identification and mitigation in people with IDD and other vulnerabilities. HRSTonline.com. He is the author of Clinical Pearls in IDD Healthcare and the Curriculum in IDD Healthcare, an online course for physicians, nurses and other clinicians that teaches the fundamentals of IDD healthcare.

A storyline I’ve heard recounted many times in my work as a physician in this field is that doctors just don’t understand the healthcare needs of my loved one who has a disability. “They were rude.” “The doctor just wanted to start him on a behavior medication.” “He didn’t listen to what I had to say.” “She told me that we should just put him on hospice because he didn’t have any quality of life.” These and other disheartening comments by clinicians make my profession look insensitive and incompetent in regards to providing healthcare for people with intellectual disabilities. And as much as I hate to say it, there’s some truth to it.

Person-centered Oath

The reason goes beyond that healthcare providers are just plain insensitive to the needs of people. I would even suggest the opposite. In fact, we take an oath at the beginning of our career, the Hippocratic Oath, that includes statements like these as excerpted from the modern version of the oath:

• “I will remember that there is art to medicine as well as science, and that warmth, sympathy and understanding may outweigh the surgeon’s knife or the chemist’s drug.”
• “I will not be ashamed to say ‘I know not,’ nor will I fail to call in my colleagues when the skills of another are needed for a patient’s recovery.”
• “I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability.”
• “I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.”

It’s not a lack of compassion, it’s a lack of understanding

Facts:

• There are numerous incorrect assumptions and stereotypes about people with dis­abilities made by healthcare providers.¹
• Physicians report a lack of experience with the IDD population and the training nec­essary to provide healthcare to individuals with IDD. ²
• Medical students who do not receive any training on or experience with the IDD population have been found to exhibit poorer performance caring for patients with IDD in tasks varying from taking a medical history, conducting physical exams and ordering laboratory tests. ³
• There is evidence that early and frequent experiences with people with disabilities can improve medical students’ knowledge and attitudes about disability, thereby increasing their comfort level in providing care to people with disabilities. ⁴

Humble beginnings

People with intellectual and developmental disabilities (IDD) have health disparities including reduced rates of cancer screenings and dental care. And unfortunately, many healthcare providers have received little training in how to meet the healthcare needs of people with IDD. I was one of them.

After I began working at a regional center for people with severe and profound levels of IDD, I quickly learned that my medical school and residency training did not provide me with the necessary skills and experience to provide adequate healthcare for people with disabilities. What I learned, I learned from the nurses and direct support professionals that had been working there for years. It wasn’t that the disease conditions were any different, it was that they presented in a different way, with different frequencies and that communication of symptoms was largely non-verbal. I had to learn to understand the language of behavior and how subtle changes in a person’s behavior were often the sign of a brewing health condition and not “just because they have a disability.” Unfortunately, these things aren’t taught in medical school or most other health professional schools, for that matter.

On-the-job training

I’m proof that it’s possible to teach an old dog new tricks! Here are some bits of information called “Clinical Pearls” I’ve learned along the way…

• Just because someone has a disability doesn’t mean that their life is less worthy of good healthcare and life opportunities. A different quality of life does not equal a lower quality of life.
• Disruptive or aggressive behavior is less likely to be “just because a person has a disability” and more often because there is an underlying reason that can be improved upon. I might be that a person is experiencing pain from a dental abscess or an ingrown toenail, for instance. It could be that they are in a restrictive environment that does not foster independence and personal choice. Or it could be because they are experiencing side effects from a mediation, and it might even be a medication that they should not be taking in the first place. There are many reasons for untoward behavior. The last thing that should be done is to start someone on a medication “to reduce their behavior” without evaluating every other possible cause. Unfortunately, this is often first-line treatment.
• Never, never refer someone to hospice or make them a “Do Not Resuscitate” on the basis of their disability alone. This decision may be appropriate under certain circumstances, but never just because they have a disability.
• Constipation is a MAJOR problem in this field of healthcare. I would have never though that constipation could cause all of the things it does, or that I would be treating people for this condition to the degree that I did in clinical practice. I emphasize this issue so much in my lectures that I’ve been called “the Constipation Doctor” more than once. What an honor!
• There are physical, positioning and movement techniques that can aid in swallowing, digestion and bowel elimination. Feeding tubes and medications are not the only solutions.
• The overuse of medications, especially psychotropic medications, is rampant in this field of healthcare. Along with it comes increased potential for side effects and interactions. Sometimes taking people off medications actually leads to improvement.
• Pica behavior can be a sign of undiagnosed gastrointestinal issues including gastroesophageal reflux disease.

And the list goes on and on and on….. There are so many of these, that I’ve compiled them into a book.

Resources for people with intellectual and developmental disabilities

In the past, families and supporters who had frustrating healthcare experiences could do little more than grumble about the lack of availability of clinicians who understood their loved one’s needs. That’s no longer the case. Here are a few newly available resources.

• The Clinical Pearls in IDD Healthcare. Is a book that contains 55 “Pearls” learned “the hard way” so other clinicians, supporters and family members of people with IDD don’t have to. It’s written in a format that each “Pearl” is a separate page of cardstock arranged in a binder format so that you can take one out and share it with healthcare providers and others when they are in need of a bit more information about a particular topic.
• For more in-depth clinical education, a revolutionary online training program called the “Curriculum in IDD Healthcare” is now available. This six-module course teaches clinicians, especially physicians and nurses, the fundamentals of IDD Healthcare. It’s interactive and includes continuing education credits for both doctors and nurses.
• The Vanderbilt Kennedy University Center For Excellence in Developmental Disabilities has developed an IDD Toolkit to assist clinicians in providing better healthcare for people with IDD. There are several important and useful forms to aid clinicians in meeting the healthcare needs of people with disabilities.
• The American Academy of Developmental Medicine and Dentistry is an organization supporting healthcare professionals in learning how to improve the quality of healthcare for people with IDD. They are a tremendous resource for clinicians looking for ways to grow their skills in providing healthcare for people with disabilities.
• The Developmental Disabilities Nurses Association is an organization dedicated to educating, empowering, and advocating for nurses practicing in the specialty of developmental disability nursing. Nurses can connect with the organization to further their skills and knowledge in this field of medicine.

When we educate clinicians, we save lives

Families and supporters of people with disabilities now have important and effective resources that they can offer, recommend, or directly provide to healthcare professionals to improve their knowledge and understanding of this important facet of medical care. Tell your physicians, nurses, hospital emergency room staff dentists and others about these resources. You might even want to provide them access. For those that have loved ones that are supported by agencies and organizations, let them know about these materials. Advocate to your local nursing and medical schools to include these offerings to their students.  Better training equates to better healthcare and better outcomes.

Right, not privilege

Healthcare is a right. And, everyone has the right to receive basic healthcare that alleviates suffering and improves quality of life. People with disabilities should have access to the same quality of healthcare that everyone does. I firmly believe that everyone, with or without a disability, should be able to present to any clinicians’ office or hospital and receive a basic level of capable, compassionate, and appropriate healthcare. If you’re a clinician, you owe it to yourself and to your patients to become educated in this area of medicine. If you’re a family member or supporter, you now can do more than just lament about the need for better trained-clinicians.

Remember: When we Educate Clinicians, We Save Lives

About the author:

Dr. Craig Escudé is a board-certified Fellow of the American Academy of Family Physicians and the American Academy of Developmental Medicine, and is the President of Health Risk Screening, Inc. He served as medical director of Hudspeth Regional Center in Mississippi and is the founder of DETECT, the Developmental Evaluation, Training and Educational Consultative Team of Mississippi. He has more than 20 years of clinical experience providing medical care for people with IDD and complex medical conditions and is the author of Clinical Pearls in IDD Healthcare and the Curriculum in IDD Healthcare.

¹ (National Council on Disability. The Current State of Health Care for People with Disabilities 2009)

² (Reichard and Turnbull, 2004)

³ (Brown, Graham, Richeson, Wu, and McDermott, 2010)

⁴ (Brown, Graham, Richeson, Wu, and McDermott, 2010; Jackson, 2007; Larson McNeal, Carrothers and Premo, 2002; Long-Bellil et al., 2011; Rose, Kent and Rose, 2011; Thistlethwaite and Ewart, 2003; Tracy and Iacono, 2008)

July 2020 marks the 30th anniversary of the passage of the Americans with Disabilities Act, the landmark civil rights law that prohibits discrimination against people with disabilities in all areas of life, including employment, schools and public transit, as well as in any spaces that are open to the public. WORLD Channel, a digital subchannel available through many PBS television stations, is celebrating the passing of the ADA by presenting five films that tell the stories of individuals who live with various types of disabilities. Each film presents a different individual narrative of someone working through various challenges to achieve their goals.

In addition to the airings on WORLD Channel, these films will also stream on WORLD Channel’s website. The films are part of the WORLD Channel series America Reframed. WORLD Channel Executive Producer Chris Hastings spoke to The Disability Tribune about what inspired the channel to commemorate the ADA.

Celebrating the anniversary of the Americans with Disabilities Act

“Every July at WORLD Channel, we focus on a theme of democracy, looking at how everyday people participate in civic life,” Hastings said. “This year, as we look ahead toward the national election, we wanted to shine a light on how democracy intersects with diversity.”

Hastings pointed out that diversity is a large umbrella that includes people of differing ethnic and racial backgrounds, as well as persons with disabilities.

“The ADA anniversary offers a great opportunity to remind people that when we talk about participation in our democracy, when we celebrate democracy, we need to ensure everyone is included,” he said.

Hastings is pleased by the selection of films that are airing, adding that each film offers a window into the lives of people with disabilities.

“I hope when viewers see the films, they will walk away with an understanding that everyone’s life is not the same and we are all dealing with different circumstances,” he said. “Yet, at the end of the day, we are all reaching towards similar things — a good life.”

5 movies about disabilities to watch

The five films share stories from a wide frame of different types of disabilities, including:

• America Reframed: Vision Portraits (aired July 4) — Award-winning director Rodney Evans takes viewers on a very personal journey as he wonders how the deterioration of his eyesight will affect his work as a filmmaker. Along the way, he chats with blind and low-vision artists: a photographer, a dancer and a writer. Evans illustrates how their work has flourished even after facing access barriers.
• America Reframed: Enter the Faun (aired July 7) — This film is the result of a two-year collaboration between choreographer Tamar Rogoff and Gregg Mozgala, a young actor with cerebral palsy. Together they challenge the limitations often associated with disability.
• America Reframed: Deej (aired July 14) — This is the story of DJ Savarese, a young writer and advocate for non-speaking people with autism. Once considered “profoundly disabled,” the film follows DJ’s first year of college as he takes a stand for others like him.
• America Reframed: Intelligent Lives (aired July 21) — This film follows the lives of three young adults with intellectual disabilities who work towards building a future for themselves that includes inclusion and independence. They do so with the support of family, friends, educators and colleagues. The film is narrated by the Oscar-winning actor Chris Cooper, who shares the story of his late son Jesse in order to illustrate that a person’s potential can reach beyond rigid IQ tests.
• America Reframed: Perfectly Normal for Me (airs July 28 at 8 p.m. EST) — This film follows the lives of four kids, ages 5 to 15, as they reveal what it’s like to live with physical disabilities. The parents seek out nurturing opportunities where the kids feel accepted and valued, from clinical services to an after-school dance program. With the dedication of parents, teenage volunteer helpers, choreographers and physical therapists, differently abled students prepare and perform in an exciting dance recital.

Where to watch

In addition to the airings on WORLD Channel, the films can also be viewed online at the channel’s Watch page at https://worldchannel.org/watch/.

There will also be a Vision Portraits event on Zoom on Monday July 27 at 7 p.m. EST.

“The event will include screenings of select scenes as well as a conversation with Rodney Evans, the director of the film,” said Hastings. “Evans produced the film to foster understanding about how those who are blind or have low vision create art. Evans himself is facing partial vision loss, allowing him a unique perspective on the content of the film. He will also be talking with some of the artists that were featured in the film.”

Interested parties can register for the Zoom event at: https://wgbh.zoom.us/webinar/register/WN_i6kp363nQ86nf8HSX5OKjA

In addition to the feature films, WORLD Channel will share a programming collection that curates documentaries and programs from across public media stations.

“The collection will feature a series of short films and specials on topics about disabilities, including a forum on how COVID is affecting people with disabilities,” Hastings said. “There will be a special on the history of the ADA in Iowa, and a series of short films highlighting different aspects of life of people with disabilities. Each piece of content will come from a different public media station that is part of the Move to Include initiative.”

The collection will be shared on July 26, which is 30 years to the day that the ADA was signed into law.

“We saw the 30th anniversary of the ADA as a chance to highlight the incredible work being produced on a local level by public media stations across the country about people with disabilities,” said Hastings. “We want to amplify both the content and the work of these stations by showcasing it nationally on WORLD Channel.”

For more information, please visit the channel’s website at https://worldchannel.org/ or its Facebook page at https://www.facebook.com/WORLDChannel/.

Photo: Director of Vision Portraits, Rodney Evans; Photo by Kjerstin Rossi

Should we fear a second wave of COVID-19? I’d suggest preparing but keeping fear to a minimum. There are a few good reasons why we may be less likely to have an intense second wave than we were in past pandemics:

1. Near instantaneous transfer of information. The lightning speed at which new cases can be identified, pinpointed and contacts traced will help reduce the likelihood of a quick spread to a large group.
2. The widespread availably of testing will help to identify cases rapidly and isolate them.
3. Better sanitation procedures including hand washing and the availability of hand sanitizers. The importance of cleanliness and the availability of cleaning supplies and sanitizers compared to past pandemics will certainly help.
4. Greater understanding of the disease itself, the early symptoms and the risks of transmission will help to focus our efforts to stay healthy where they have the most benefit.

Remember that numbers can be misleading. When looking at the numbers of cases that are being reported, focus on the trends and not just the number itself, because the more testing that’s done, the higher the number of positive cases that will be reported. It’s a better indicator to look at the percentage of positive tests rather than just total number of positive ones.

Kids with a cognitive disability and COVID-19

Nonetheless, people with cognitive disabilities, also known as intellectual and developmental disabilities (IDDs), are at greater risk of death from a COVID-19 infection according to a new study. People with IDD had higher prevalence of specific comorbidities associated with poorer COVID-19 outcomes. Distinct age-related differences in COVID-19 trends were present among those with IDD, with a higher concentration of COVID-19 cases at younger ages. In addition, while the overall case-fatality rate was similar for those with IDD (5.1%) and without IDD (5.4%), these rates differed by age: ages ≤17 – IDD 1.6%, without IDD <0.01%; ages 18–74 – IDD 4.5%, without IDD 2.7%; ages ≥75– IDD 21.1%, without IDD, 20.7%. The study concluded that, though of concern for all individuals, COVID-19 appears to present a greater risk to people with IDD, especially at younger ages.

What can you do to stay healthy?

1. Practice good hygiene. Wash your hands regularly and teach your loved ones to do the same. Modeling behavior that we want others to do is an important, non-verbal way to communicate healthy practices.
2. Have a supply of hand-sanitizer available. Use ones that are at least 60% alcohol and use them regularly. Take care to prevent ingestion by those who love to “sample” new things.
3. Ensure an adequate supply of a person’s medications in the event that trips to a pharmacy become difficult.
4. Fortify supplies of household items, personal care items and cleaning supplies before a shortage might present itself.
5. Encourage appropriate mask-wearing. For those that might have difficulty wearing one, there are a few tips below.
6. Strengthen your support network to provide assistance with daily life in the event that members of your usual support system become ill or affected by a new quarantine.
7. Expand the availability of activities and entertainment should the need for social distancing or quarantine become necessary. This might include online visits with friends, web-based group activities and outdoor activities that can be done during these times.

Masks can play a role in reducing the spread of infection. They seem to be better at keeping someone who is infected from unknowingly spreading disease than the other way around. Regardless, some places require a mask to be worn and some people with disabilities may be strongly resistant to the practice.  Here are a few ways to encourage mask-wearing:

1. Model it. When people see others wearing a mask, they are more likely to feel comfortable doing it themselves.
2. Make it fun. Let them help in either picking out or designing their own mask. If a person likes superhero movies, find one that wears a mask and show them that it can be pretty cool! Many old western movies show mask-wearers, as well.
3. If they have a favorite stuffed animal, put a mask on them, too!
4. Let them carry a mask around, even if they don’t want to wear it. It may help them feel comfortable having one around and later they may decide it’s OK to wear.

For more mask-wearing tips check this out.

Many of the suggestions in this article are good practices regardless of the presence of a pandemic. They could come to serve you well for pandemics, natural disasters or other emergency situations. Remember the old Boy Scout motto: Be Prepared!

Dr. Escude is a board-certified family physician and one of the few Fellows of the American Academy of Developmental Medicine. His is the president of Health Risk Screening, Inc. which specializes in risk identification and prevention in people with IDD and other vulnerabilities. HRSTonline.com.

Four television shows and one feature film have been honored with the “Seal of Authentic Representation” from the Ruderman Family Foundation. Established in Boston in 2002, the Ruderman Family Foundation works toward the inclusion of people with disabilities in society. The Foundation’s Seal of Authentic Representation recognizes films and television shows that have demonstrated a commitment to the full inclusion of people with disabilities in popular culture. This is particularly important as so many productions have cast actors without disabilities in roles that portray disability.

Disability in Film: The Honorees

This marks the fourth time the Ruderman Family Foundation has bestowed the Seal. The current group of honorees are:

See, a science fiction drama produced by Apple TV+. The series is set in the distant future at a time when the human race has lost the sense of sight and society must find new ways to interact and survive. See has cast Marilee Talkington and Bree Klauser, both of whom are legally blind.

This Is Us, NBC’s comedy/drama about a set of triplets, their parents and the family’s struggles, has cast Blake Stadnik, an actor who lives with Stargardt Disease, a form of macular degeneration. Stadnik plays Jack Damon, a character who lives with retinopathy of prematurity, a disease of the eyes which can cause blindness.

Atypical, a coming-of-age series produced for Netflix, tells the story of 18-year-old Sam Gardner, who has autism spectrum disorder. The show has cast three actors with autism: Dominique Brown, Layla Weiner and Spencer Harte.

Also produced for Netflix, The Politician earns kudos for casting Ryan J. Haddad, an actor who lives with cerebral palsy, as Andrew Cashman, a character with cerebral palsy.

And finally, the feature film Spare Room, a romantic drama, co-stars Cole Sibus, an actor with Down Syndrome who plays a character with the same disability.

Advocating for Actors with Disabilities

The actors couldn’t be more pleased with their jobs.

“I am grateful to the Ruderman Family Foundation for its steadfast commitment to disability inclusion in entertainment, and I thank the Foundation for recognizing The Politician with its Seal of Authentic Representation,” said Ryan J. Haddad in a statement. “Series creators Ryan Murphy, Brad Falchuk and Ian Brennan set out to populate the world of their satirical high school with a variety of voices without calling attention to it in the scripts. It’s been a privilege for me to inhabit their story and their words. This kind of disability inclusion is refreshing, truthful and necessary. We exist in the world, we can be part of any story, and those stories need not be laser focused on our disabilities in order for us to play meaningful roles.”

“It is incredibly important for the entertainment industry to authentically cast characters with disabilities,” added Blake Stadnik. “Not only does it deservingly give work to some of the most talented actors I know, but it also influences the audience’s perception of disability as a whole. Personally, it would have been beyond meaningful to me to see a person with low vision play a character like Jack when I was growing up. I am honored to possibly be that for someone now, and I am so proud to be part of a show that wants to authentically represent everyone’s story.”

Disability Advocate: The Ruderman Family Foundation

The Ruderman Family Foundation conducted a study in 2016 that found that only 5% of characters with disabilities on television were played by actors with disabilities. In February 2020, the Foundation released a new study that showed that the number of disabled characters played by actors with disabilities has risen to 22%.

For more information on the Ruderman Family Foundation, please visit https://rudermanfoundation.org.

Photo: Jason Momoa and Hera Hilmar in See. Photo courtesy of Apple TV+.

Josh Aronson’s new documentary To Be of Service, now available on DVD and also streaming at Amazon Prime and Netflix, paints vivid portraits of the physical and emotional scars combat veterans often live with after service.

To Be of Service Review

As the film opens, we meet a number of veterans of the Iraq and Afghanistan wars. Their stories are harrowing. One man recounts his experience of surviving a helicopter crash that claimed his leg; he describes how his limb was on fire while he screamed for help. A woman speaks of watching people die horrible deaths on the streets of Baghdad. Naturally, such experiences haunt these soldiers after they return home.

All of the documentary subjects have been diagnosed with PTSD — post traumatic stress disorder. Symptoms include severe depression, anxieties, nightmares and flashbacks to the horrific events which caused their conditions. At times, the symptoms are so severe they struggle to do day-to-day tasks.

One combat veteran admits to having attempted suicide — he lay in a coma for 19 days after filling his body with alcohol and pills. Another manages to take his daughter to school each morning, yet he is careful to stand far apart from the other parents because his deep paranoia has made it all but impossible for him to approach other people.

These are men and women who have been wounded on many levels and now live with a permanent disability. And as such, their doctors recommend that they get emotional support animals to help them manage some of their PTSD symptoms.

Service Dogs Helping Veterans

Aronson’s camera follows the veterans as they become acquainted with their new canine companions. There’s a training period, but it’s not just the dogs who are trained. While the dogs are taught how to obey commands and provide the needed emotional support, so are the humans. The veterans are taught how to interact with their new companions by a dog trainer. Each former military person establishes a deep bond with their dog, and the dog, filled with love and eager to please, bonds just as deeply to their humans.

The changes these animals make in their humans’ lives are remarkable. Thomas, the dad who was afraid to approach the other parents at his daughter’s school, now stands with the parents and happily waves goodbye to his little girl, his canine friend by his side. Greg, the man who attempted suicide and who found it difficult to leave his house to do the things he loves to do, now walks out his front door for a break to the beach a few blocks away.

PTSD: An Invisible Disability

Aronson spends a lot of time with his documentary subjects. The viewers get to know not only them, but also their family members. We see the depth of their pain, and we also see the joy in their faces as they transition into a more positive phase in life. They will always have PTSD, but now they have a canine companion that makes things easier. It’s a touching thing to see.

PTSD is an invisible disability, one that is not always taken seriously by the general public. To Be of Service puts a face on the condition, as well as explains symptoms and shows how it affects people. The film is a call for compassion and understanding. While the film has some scenes that tug at one’s heartstrings, it is ultimately an uplifting experience. Aronson wisely includes commentary from several psychiatrists, giving the film’s stories a great deal of credibility.

The film’s DVD includes optional closed captioning for the hearing impaired, but descriptive audio for the blind is nowhere to be found. The same goes for versions on Amazon Prime and Netflix. For a documentary that deals with disability, this is a glaring omission on the part of the production and distributor.

Buy To Be of Service on Amazon now!

Note: Some of the links in this post are affiliate links and I will earn a commission if you purchase through these links (at no additional cost to you).

Photo: Courtesy of To Be of Service

In January of 2017, my family and I discovered that our 15-year-old son Sebastian — a straight-A honor student, a painter, a sculptor, a potter and a water polo-player — was almost completely blind. We were going through old photos and realized that he couldn’t recognize himself or anyone else in any of the pictures. We then discovered that Sebastian had taught himself to count his steps and turns as a toddler, and had been navigating our own home as a blind person would, all his life.  Sebastian had also taught himself early on to process his vision verbally, using words to help him “see.” The only things he could see for real were letters and numbers. That’s why nobody knew he was blind. Not even him.

An epic struggle to get a medical diagnosis and basic services ensued. The answer we heard over and over again, from psychologists, neurologists, vision therapists and Sebastian’s trusted pediatrician was, “I cannot help you.”

Countless other parents of children with disabilities that are not readily apparent or easily understood know how it feels to come up against one dead end after the other when searching for the help they need. And in this age of coronavirus pandemic, where services considered nonessential are being curtailed, these same families may feel like they’ve been forgotten altogether.

It took almost six months, seeing one specialist after another, for my family to learn that Sebastian is one of tens of thousands of people in the United States alone who has cerebral/cortical visual impairment (CVI) and to get him the basic services he needs.

CVI was identified as the number one cause of visual impairment in the developed world more than ten years ago and still doesn’t have a diagnostic code.

Here are my tips for how parents of children who have any disabilities can become better advocates for their children when professionals aren’t taking your concerns seriously — or aren’t listening at all:

Trust yourself

You know your child better than anyone else in the world. If you are seeing behaviors or symptoms that concern you, trust your instincts. Sebastian’s symptoms of his visual impairment were very subtle when he was little, but once we figured it out, I knew without a doubt what his condition was. That certainty gave me confidence, and that confidence kept me going against all odds.

Listen to your child

Listening to your child doesn’t just mean hearing what they tell you with words. It means paying attention to what they may not be able to say. Crying is communication. A child’s fear, anxiety, anger or pain is as real to them as yours is to you. If your child is verbal, talk to them about what they are experiencing and what it is that distresses them. If the child is too young for conversations, or is nonverbal, close examination of behavioral patterns is necessary.

Be persistent

Doctors are only human and they only know what they’ve been trained to know. As we are discovering with the COVID-19 infection, new infections and medical conditions are discovered regularly, and many older ailments are still poorly understood. If one medical provider is unable to answer your questions or provide your child with the necessary care, find another. Some individuals are more curious and on top of the latest research than others.

Document everything

I have 36 single-spaced, typed pages of documentation of what we went through to get a diagnosis for my son’s vision impairment. I wrote down everything of importance that I could remember about each medical appointment, as well as discoveries we made about Sebastian’s visual processing along the way.

Your persistence can be the difference between getting help for your child or not.

Expand your search beyond the medical community

Different professions vary in how quickly they educate their members on new medical and scientific information. Educators, occupational therapists, science researchers, speech pathologists or any other related field may sometimes be a parent’s best resource. We finally got help thanks to Lukas Franck, the senior consultant at The Seeing Eye guide dog organization who helped connect us to the best vision and brain experts in the world.

Be prepared for the long haul

It took us 15 months to complete our medical journey. We saw approximately 20 different doctors without success. A research study in Paris and another at the Harvard CVI Laboratory for Visual Neuroplasticity finally led us to a conclusive medical diagnosis of CVI from Dr. Barry Kran at the end of March, 2018. The head of optometrics from the New England Eye Low Vision Clinic, Dr. Kran is a leader in the field of cerebral/cortical visual impairment, and was and continues to be an incredible support for our family.

If you are having trouble finding medical or educational assistance for your child, trust your gut, listen to your child, don’t give up, expand your search for help, and be prepared to go the distance. Parents of children who have disabilities are the bravest, most persistent and knowledgeable people in the world. Your knowledge of your child is profound, crucial and irreplaceable. Finding professionals who understand this fact and are willing to listen is half the battle.

Order Stephanie Duesing’s book, Eyeless Mind: A Memoir About Seeing and Being Seen on Amazon!

Stephanie Duesing is devoted to raising awareness of Cerebral/Cortical-Visual Impairment (CVI) and advocating for patients with this prevalent but largely unacknowledged cause of visual impairment. A music educator, Stephanie has taught elementary and middle school music and chorus, as well as private voice and piano. She also opened her own Musikgarten studio, where she taught classes for families with babies, toddlers and preschoolers. She’s a graduate of University of Illinois at Urbana-Champaign and lives in the western suburbs of Chicago. Learn more on her website at www.stephanieduesing.com. 

“Books are in the holy shape. They are silent, and yet, speak directly into the imagination,” says Maghra, played by actress Hera Hilmar, in episode two of See, a science fiction drama produced for Apple TV+.

Disability Representation in the Media

Disabled characters in media rarely get a fair shake at representation, if they even get representation at all. In the extremely rare cases that a character with a disability has any agency, that character is bathed in a stereotype or the disability is obliterated altogether.

Upon first watching the audio-described trailer for See, which is about a blinded population of survivors centuries after a virus wiped out many humans in the past, I had questions. For example, in the series, two twins have the mythical ability of sight. Will they be just convenient tropes or will they become an integral part in shaping the world, centuries beyond their passing?

This question and more had me curious enough to check out the sci-fi fantasy. After all, I’m a sucker for dystopian fiction and it was the first production by a major studio where blindness was depicted as just a way of life.

About the New Apple TV Series See

See takes place in the distant future, after a deadly virus decimated humankind. Those who survived emerged blind. Jason Momoa stars as Baba Voss — the father of the aforementioned twins, who were born centuries later with the mythic ability to see. Queen Kane, played by Sylvia Hoeks, is the ruler of the Payan tribe. Queen Kane lives in one of the only places that still has electricity. In a world where sight is considered a forbidden heresy, she tasks her tribe with finding the children who are rumored to have this mythic ability of sight.

See is a different world from our own. In this world, books are seen as mystical or advanced technology, because they don’t make a sound. People in this world don’t have to adapt to a sighted society, they just live in it while facing war, love, and even tenderness. This is important, because no other media portrays blindness in this kind of casual way, even if it holds a worrying plot point. There’s a bigger picture than the sighted savior trope, after all.

Audio Description in See

To illustrate how the population lives, very few things are explained through dialogue, which makes audio description so vital. There are little things, like using a sword to determine the texture changes in the ground — used as an approximation of guide dogs — and ropes are used inside and outside to effortlessly guide people from one place to another. In this world, it would make sense that sight would be viewed as a form of dark magic.

See is just one of many offerings on Apple’s new, on-demand streaming service called Apple TV+. Like all of their other content, See has audio description in nine languages. And no audio description track is region locked, which is a great thing. Also, one nice surprise is that the audio description is mixed in Dolby Atmos, which is something I wish more streaming companies would do.

The only thing that was disheartening to see was the audio description writer and narrator for See weren’t credited at all. I can only identify Tansy Alexander as the audio description narrator, because she described other popular titles, such as Stranger Things.

Apple TV’s Screener Platform is Inaccessible

Unfortunately, Apple’s screener platform for journalists wasn’t accessible, so I was limited to reviewing the described consumer episodes. Moreover, the screener player for the press had unlabeled buttons, making it very difficult and, even in some cases, unusable by both my desktop screen reader and Apple’s vision accessibility technology, VoiceOver. The screener platform didn’t have audio description on any of the episodes. And, in a show like See, audio description is vital to understand how the world is crafted.

At the time of this writing, only three episodes were available for me to watch as a consumer. Apple says there will be an episode released every week, but some shows have full seasons released.

See Review: A Giant Leap for Blind Actors

Upon watching all available episodes, I was pleasantly surprised that Apple didn’t shy away from sex and violence. There’s a battle in the first episode and it is quite bloody. I definitely wouldn’t recommend this show for kids.

Even with the violence though, there’s a tenderness in the portrayal of all the characters. They are strong, fierce and cunning. They are people and soldiers first. Their disability is just a fact of life, which is something I’ve never seen on TV. I’ve also never seen disability adaptations handled in such a refreshingly casual way.

The difference isn’t just on screen. Huge leaps were made with the inclusive nature of this production. From hiring visually impaired actors and actresses, to hiring a totally blind person as a frequent consultant. Joe Strechay is one of the many totally blind consultants, and he’s credited as an associate producer.

Bree Klauser is one of many visually impaired actors and actresses starring in this show. According to her IMDB page, she is a New York-based singer, actress, voiceover artist, and songwriter who happens to be born legally blind. Bree earned her BFA in acting from Brooklyn College and is a long-time student of former Metropolitan Opera singer Francisco Casanova, and has studied with many other coaches and Broadway musical directors. She has full achromatopsia, which leaves her visual acuity at about 2800. With correction it’s about 2250, but still not corrected enough to not be considered legally blind.

One thing that really stood out to her, as she landed the part of Matal, a tactical warrior for the Alkenny hero tribe, is just how accessible the crew was. The crew was extremely inclusive, and she really enjoyed working with the other cast members.

“It really was kind of an ensemble cast,” Klauser told the Disability Tribune. “Even though we had some big names, no one acted like a star. And especially us who worked in the Alkenny tribe, we spent many, many days in the wilderness, sometimes in the cold and the rain and the mud, trekking through water. It was really a bonding experience.”

She shared that the energy was infectious, and it helped that the staff was extremely accommodating to her disabilities — far more than any other studio had ever been.

When it comes to the portrayal of disability in the show, Klauser is extremely happy about not only the portrayal of the blind, but especially blind women. She stated that quite often, in horror movies especially, blind women are portrayed as victims. “So, I’m really glad that we don’t see that [in See],” she shared. “The women that we meet in this show…They are certainly not victims. These are some strong bitches. So, yeah, I think they get that right.”

Participating in the show was, as Klauser puts it, a huge burden lifted off her shoulders, because the crew were so accommodating, and the set was very accessible. She shared that it was the little things that made a world of difference, such as sight lining not being an issue, because eye contact wasn’t important.

The visually impaired actors also gave valuable input on the script, and Klauser was extremely pleased to see people taking script suggestions seriously. Klauser clarified, “In the development of the script, because this is something that’s not based off of any kind of other book or lore or whatever, it’s all being created by Steven Knight. And he said that it was from a dream or something, which is pretty rad. But they were very sure to listen to us if we ever felt like any of the language being used was ableist, or if something just didn’t make sense logically in this world of blindness.”

See is a step forward. Some may call it a shaky step, but I certainly don’t. I think it’s the leap we need to introduce more shows with disabled characters, portrayed by disabled actors and actresses, and on an inclusive and accessible set.

Robert Kingett is an award-winning author for his essays that feature human stories, boldly told, and his fiction, where disabled characters live normal lives. When he’s not writing, he loves to listen to fiction podcasts. His website is blindjournalist.wordpress.com.

Photo: Jason Momoa and Hera Hilmar in See. Photo courtesy of Apple TV+.

Not quite seeing or hearing artist Terry Galloway ambled through early childhood with mixed emotions. On one end, she was arrogant. In fact, she would even describe herself as “a little shit,” yet she also sought physical approval from the people around her.

“My deafness,” she said, “even before it was diagnosed, made me cleave more to others for a reassurance that I wasn’t quite aware I needed.”

When Galloway was 10 years old, doctors discovered she had a chemical imbalance caused by the introduction of drugs to the fetal nervous system, a result of medication her mother took while Galloway was in the womb. Ultimately, the reaction to the treatment left her deaf and with limited eyesight.

“I was saddled with glasses and hearing aids, and my deafness manifested itself then as a savage insecurity,” she said.

“I was mainstreamed,” Galloway, 68, continued, “and grew up not knowing any other kids who were deaf or Deaf. My own deafness, and my budding, constantly churning sexuality, made me feel warmer toward the kids with their own problems — kids who liked to dress differently, kids who were poor, kids who were too fucking smart for their own good, kids who felt uncertain about their sexualities, kids with disabilities — both hidden and visible. I identified with those odd ducks. When I was in my late teens, I met some other kids who were ‘big D’ Deaf. I admired the hell out of them, but they frightened me a little — they were tough. But then, they had to be.”

In her book, Galloway explained big D Deaf.

“There is a definite hierarchy in that deaf culture,” she writes. “If you are deaf of deaf — a deaf person born to deaf parents — and your language is Sign and the company you keep is primarily deaf, you are Deaf with a capital D.”

With plenty of experiences to draw from, Galloway plunged herself into the arts, and just like many young people with disabilities in the late 1960s, she faced a lot of discrimination.

“When I was graduating from high school, the guidance counselor was advising all my friends who were in the Thespians of the Scarlet Mask to apply for Yale, or UCLA, or any college that had a decent drama department,” she said. “But when I walked in the door, he took one look at me and said, ‘Oh, you’re the one.’ And handed me a brochure that read, errors and all: ‘Factory work make good job for deaf.'”

Like many LGBTQ and disabled people of that time, Galloway carved her own path into the arts. With the help of friends, she sought out or created spaces that would welcome people like her.

“Places with people who didn’t think of me as a waste of time because I couldn’t hear or talked with a kind of muffled lisp,” she said. “And from there I started to write pieces that spoke to the experiences of people like me — that’s when I started doing my solo shows.”

In 2009, Galloway published her memoir, “Mean Little deaf Queer,” which has become a cult classic among people with disabilities. Celebrated lesbian author Dorothy Allison called it “a damn fine piece of work that is unbelievably powerful.” Author Kenny Fries included it in his article on LitHub titled “8 Books That Move Disability from the Margins to the Center.”

“She gives us what we are rarely given in literature: a fully dimensional disabled person, warts and all,” Fries said.

Just a year after the release of her groundbreaking memoir, Galloway received a cochlear implant — a process not all deaf people are eligible for. And even Galloway herself was initially unsure it would work. The surgery allowed Galloway to gain significant hearing and her latest show, “You Are My Sunshine,” is about her experience of negotiating the world of sound.

Galloway identifies as being a “little d” deaf, omni-sexual, happily married, female-ish artist/activist. Along with her partner, Florida State University communication professor Donna Marie Nudd, Ph.D., she splits her time between Austin, Texas and Tallahassee, Florida.

The couple also co-directs the Mickee Faust Club — an arts nonprofit that creates performance opportunities for marginalized communities through workshops.

“I love Mickee Faust,” said Galloway. “I love playing the head rat, Mickee Faust, who is supposedly the sewer dwelling, cigar chomping, beer guzzling, foul mouthed, rat bastard brother of that other more famous unctuous rodent in Orlando.”

To learn more about the Mickee Faust Club, visit http://www.mickeefaust.com. To follow Galloway’s other projects, check out www.theterrygalloway.com.

Employers aim to show workers that they care about them — and are invested in their future — by offering benefits. But more often than not, these corporate perks fail to offer employees services that are useful, especially during a crisis.

One of the most commonly overlooked benefits by organizations is flexible work time to be a caregiver for a family member. For LGBTQs, who often follow a chosen family structure, this can include neighbors and friends.

San Francisco resident Terry Wicks, now 64, was enjoying a successful career as an X-ray/MRI tech in 2015 when his husband, Michael Draper, now 57, was diagnosed with multiple system atrophy — a very rare neurodegenerative brain disease that has no treatment and is fatal.

“When we were told it was terminal,” said Wicks, “I gave two weeks’ notice and quit my job to focus on Michael and the life changes that were necessary going forward.”

Wicks confirmed what we all know: that caregiving is tough. He spends his entire day caring for his husband, running the home, looking after pets, and managing the household budget. Prior to his diagnosis, Draper worked as a senior director of global operations for a major tech company in Silicon Valley. Now that some time has passed, Wicks said that loss of income has greatly impacted their family.

“I am not compensated in any way by anyone for being Michael’s full-time caregiver. The fact that I cannot work because I have to take care of Michael has really hurt our finances,” said Wicks.

Wicks and Draper’s heartbreaking story is, sadly, not uncommon. According to a 2019 Harvard Business School study, “The Caring Company: How Employers Can Cut Costs and Boost Productivity by Helping Employees Manage Caregiving Needs,” by Joseph B. Fuller and Manjari Raman, which examines survey results from 1,500 employees and 300 human resources leaders, three out of four (73 percent) employees surveyed reported having some type of current caregiving responsibility, and more than 80 percent of employees with caregiving responsibilities admitted that caregiving affected their productivity. In addition, almost 25 percent of employees surveyed who said they left an organization cited doing so to care for an ill or disabled spouse, partner, or extended family member.

“We are always working,” said Raman, one of the study’s authors, “and where is the time to take care of our responsibilities?

“Traditional families don’t really exist, but most employers don’t acknowledge family of choice and lose out on great workers,” continued Raman. “Our research found that most organizations are wasting money offering benefits that employees don’t need, and overlook care benefits.”

Raman explained that care benefits are often limited to executives and are not advertised within organizations or on benefit company sites. She also stated that people live in a culture where they can feel guilty for taking time off — even if it is to deal with a tragedy — and may be hesitant to ask their employer for a care benefit.

Paul Blom, owner of a Right at Home franchise in Bloomington, Minnesota (https://www.rightathome.net/twin-cities) — an agency that provides caregiver services — said most people end up paying for caregivers from their income or out of their savings, and that the costs quickly add up.

“It can cost anywhere between $30-$40 per hour, depending upon the level of care that is required,” he said. “People who are low-income can qualify for medical assistance/Medicaid programs that will cover care, but the reimbursement rates have stagnated over the last 10 years, to the point that there are fewer and fewer agencies that will accept reimbursement through those programs.”

Blom’s business has started to see some referrals come in through http://www.care.com — a website that connects families with different care providers. However, he said it’s only a handful of large companies that are offering a care benefit through the care.com service, Care Concierge.

Both Raman and Blom feel more employers need to offer care benefits; yet, it’s a long journey toward making care benefits a common company perk, as companies would have to shift their culture in order to appreciate the advantage of helping their employees meet their caregiver responsibilities.

To read the full Harvard study, visit https://hbs.me/2VXj18x. And for more information about caregiving resources for the LGBT community, you can visit the National Resource Center on LGBT Aging at: https://www.lgbtagingcenter.org/training/index.cfm