FROM THE STACKS
EDITOR’S NOTE: There are literally thousands of journals published around the world that relate to the disability community. It is virtually impossible to capture even a fraction of them. HELEN receives "stacks" of journals and selectively earmarks what we feel are "must read" articles of interest for our readers. It's a HELEN perk!
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(Editor’s Note: It is important that HELEN serves to remind us of the founders and heroes of the disability movement.)
The Institute for Community Inclusion Mourns the Loss of One of ICI’s Distinguished Founders, Ludwik Stefan Szymanski
With great sorrow, we share with you the news that Psychiatrist Emeritus Dr. Ludwik Stefan Szymanski passed away peacefully in his home at the age of 92 on November 22, 2024.
Dr. Szymanski was a cofounder of the Developmental Evaluation Clinic (DEC) with Dr. Allen C. Crocker, which we know today as the Institute for Community Inclusion (ICI) at UMass Boston and Boston Children’s Hospital (BCH). He advocated for families and children, exploring and improving health and social outcomes for children with developmental disabilities at BCH.
Dr. Ludwik Stefan Szymanski
In these earliest days at the DEC, Dr. Szymanski and his team took an interdisciplinary, family-centered, hands-on approach to child developmental evaluation, building the foundation of values the ICI and BCH advocate today. This approach was revolutionary for its time during the 1960s and 1970s. Going forward, Ludwik was always at the vanguard in the field of mental health for people with intellectual and developmental disabilities, and he became an international leader in developmental neuropsychiatry.
"I feel fortunate to have had the opportunity to work with Dr. Szymanski during my career at BCH and ICI. While we still have much work to do to address the mental health needs of people with intellectual disabilities, Ludwik’s work was groundbreaking. He was an esteemed clinician, and a teacher and a student. He cared not just about his patients, but about those who supported them, whether they be family or professionals. He was kind and caring. We will miss him." – Cindy Thomas, ICI Director
Over the years, Dr. Szymanski served as a consultant to the US Department of Justice and to state governments on mental health care of persons living in institutions. He also worked as a psychiatrist for the mental health clinic of the Boston Juvenile Court and advocated to end atrocities in state schools that segregated people with disabilities. In 1990, Dr. Szymanski established and directed the Center for Autism and Related Disorders at the BCH.
Dr. Szymanski also devoted his time to teaching trainees at the Leadership Education in Neurodevelopmental and related Disabilities (LEND) program at BCH. He mentored students engaged in interdisciplinary projects related to mental health and developmental disabilities. He kept an open mind and wanted to learn from his LEND students.
Dr. Szymanski’s contributions to Boston LEND are innumerable. His long-time colleague and friend shared fond memories of Ludwik:
"Ludwik's ability to listen, to engage, to help others, and to help others help themselves was absolutely inspiring. He was an amazing colleague, teacher, and friend. He was always ready to work with and mentor our interdisciplinary students, always willing to give a lecture on short notice, or to join the students in new learning experiences. He was dearly admired by all." – Dr. David Helm, Former LEND Director
Ludwik championed the philosophies of individual self-determination and person-centered care throughout his career. In a paper he published in 2000, Happiness as a Treatment Goal, Ludwik wrote,
"The ultimate goal of treatment, whether by the means of psychotherapy, psychoactive drugs, habilitation, or any form of active treatment, should be bringing individuals to the highest realistically possible level of quality of life, including their happiness and satisfaction with their own life."
We are confident that Ludwik’s legacy will continue at the Boston LEND program and the ICI for many years to come.
(Source: Institute for Community Inclusion)
Media Representation of Disability and Chronic Illness
By Tatiana Corbitt
Living with a chronic illness and/or disability can weigh heavily on a person. So when someone with a disability or chronic illness gets any sort of spotlight, it can be inspirational for those in similar shoes! Disability and chronic illness representation in the media is important for many reasons, including this one.
Personally, as a person with narcolepsy, I have seen little to no accurate representation of narcolepsy in the media. Characters with narcolepsy are often written by able–bodied people, with little to no context on what living with the disease is actually like. And it shows!
On the other hand, seeing successful people living with narcolepsy is not only inspirational, but also a great way to spread awareness about the condition. People are often intrigued about how people can handle fame and success along with their disability. It isn’t easy, but a little bit of accessibility can go a long way. That’s why what we do as social health network advocates is so important!
The importance of accurate representation
Accurate disability representation in media can spark conversations and educate viewers about disabilities in several ways. When we feature characters with disabilities in films, TV shows, and other forms of media, this disability representation brings visibility to the experiences and challenges we face. This paradigm shift can prompt able-bodied viewers to notice and engage with the topic of life with a disability or chronic illness. And this can even lead to discussions about disability-related issues.
We can educate people on our condition just by living it out loud in the media
This can increase empathy and understanding, not only for us, but for others living with disabilities or chronic illnesses. When viewers connect with characters with disabilities on an emotional level, it can foster empathy and understanding. Media representation humanizes individuals with disabilities. This allows viewers to better relate to our experiences and challenges.
This emotional connection encourages conversations that promote empathy, compassion, and a deeper understanding of disability-related issues. As a result, people may find themselves extending empathy towards those in their lives living with disabling or other chronic conditions.
Accurate disability representation in the media challenges assumptions and stereotypes about people living with disabilities and chronic illnesses. Genuine representations of people with disabilities can help humanize us to viewers. Viewers gain a better understanding of how diverse and talented our community really is! This leads to conversations about the complexities and diversity within the disability community.
It can help others learn about us, too
Not to mention, authentic portrayals of disabilities and chronic illnesses in media can provide viewers with insights into our daily lives. They get to see our struggles, our triumphs, and everything in between. By depicting the real situations faced by people with disabilities, the media can educate viewers about the challenges we encounter, the importance of accessibility, and the need for inclusive policies. These policies extend to the workplace, public settings, and the community overall.
Finally, media representation of people with chronic illnesses and disabilities can serve as a platform for educating viewers about these topics. Through documentaries, news features, and informational content, media can provide in-depth information about different types of disabilities, their causes, and the social, cultural, and political aspects related to disabilities. This educational content can spark conversations among viewers. When this happens, it helps society to become more informed and inclusive towards the disability community as a whole.
Do you know of any famous people living with your condition? How do they discuss their condition (if at all?) How does this representation make you feel?
(From Social Health Network)
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(Editor’s Note: Thanks to Steve Eidelman for submitting this "From the Stacks" article from the Annals of Family Medicine)
Learning From Ervin’s Care: Ethics, Health Care Finance, and Human Connection
Amy C. Denham
The Annals of Family Medicine November 2024, 22 (6) 565-567; DOI: https://doi.org/10.1370/afm.3182
A 70-year-old man with complex multimorbidity and intellectual disability was my patient for the last 5 years of his life. He taught me important lessons about the challenges of practicing medicine as a primary care physician. He embodied all the complexities of multimorbidity, the ways in which clinical decision making can be fraught with uncertainties and tradeoffs. He raised difficult ethical questions for his care team, questions about how to respect the dignity of patients who lack decisional capacity and who do not have surrogate decision makers. The gaps in his care revealed shortcomings of the US health care system, but his care in his final years also showed some of the bright spots in coordinated, team-based care. Most importantly, caring for this patient taught me about the rewards of the human connections that primary care physicians establish with their patients.
Source: Annals of Family Medicine Link to article: