Kristofer Smith, MD, MPP is the Chief Medical Officer of Landmark Heath, where he oversees efforts to establish a high-quality and clinically effective home-based medical care model for patients with serious illness.
We sat down with Dr. Smith to discuss his experience caring for patients with serious illness and developing programs to provide health care at home, among other topics. The following interview has been edited and condensed. Read More
By P.F. Anderson and LaTeesa James
PubMed special queries are master search strategies on common, important, but challenging health topics, which are usually peer-reviewed. Disability certainly qualifies as a common, important health topic that is challenging to search – and yet, no PubMed special query exists for it.
This oversight is concerning. Put simply, it’s important that disability as a topic is easily identifiable in the scholarly record. While there are specialized databases for the topic, such as NARIC’s REHABDATA, the global research community is most likely to begin with PubMed. Currently, structured vocabulary terms related to disability are scattered throughout PubMed’s medical subject heading (MeSH) trees, often without cross references to facilitate discovery, forcing discovery to largely depend on the unstructured language of whatever words were chosen by the authors to describe their research topics. This lack of consensus and consistency across professional disability terms, categories, and definitions contributes to a lack of comparability, discoverability, and access for disability data as well as research.
By Maxfield Sparrow
I am an autistic person who has been using the internet as a social prosthetic device since 1983. I was born in 1967 and began therapy in 1972, so the iPad didn’t exist and the only screen time parents worried about was the five channels of broadcast television available twenty hours a day. TV was fine, but my real passion was books. I was hyperlexic and from a very early age I had an unquenchable thirst for written language. My obsession with reading was considered pathological, and adults took my books away to try to force me to socialize with other children instead.
It didn’t work. But it is sadly common that those of us with developmental disabilities are held to higher standards than everyone else. As children, once we are identified, everything about us is scrutinized. Well-meaning adults, fearing for our future, hold us to higher standards of everything from politeness to academic discipline to the age-appropriateness of our interests to the ways we move through the world. We’re not allowed to “get away with” the things non-disabled kids do every day.
By Joelle Boxer
Earlier this month, Mexico’s Supreme Court issued a ruling decriminalizing abortion nationwide, setting a powerful example in the global trend of abortion law liberalization, including on the grounds of sex equality.
Hailed as “incredible” by reproductive justice advocates, the decision will be most impactful in the 20 Mexican states where local laws still criminalize abortion, potentially removing access barriers for more than 42 million women.
This article will explain the origins of the case, what the decision holds, and what it says about sex equality.
By Ashley Shew
Far too often, when people write and talk about technology and disability, stories are deeply shaped by ableism. Often when devices are painted as “solving the problem of disability” or “empowering disabled people,” they suggest that being disabled is itself a problem, and that people should try to be as nondisabled as possible. But pretending to be nondisabled is not a great way to live — to be in hiding or denial, to not give your body and mind the rest they deserve, to hurt yourself trying to live up to expectations and infrastructure sometimes literally designed to keep you out. Technology itself gets painted as heroic and important — and, please, investors, throw more money at the tech industry — when any disability is mentioned. Disability is often appealed to as a justification for technological development, and as a moral imperative toward investment in technological research. This is technoableism as I describe it in my book, Against Technoableism: Rethinking Who Needs Improvement.
By Maayan Sudai
Joanna Wuest’s Born This Way: Science, Citizenship, and Inequality in the American LGBTQ+ Movement describes the evolution of the “born this way” framework through pivotal moments in the history of the LGBTQI+ movement.
A central theme of the book’s analysis is the role that “certainty” and “uncertainty” play in the legitimation of science-based policy regarding sexuality and gender issues. Uncertainty of what might happen has been pitted against LGBTQI+ reforms, from when conservative researchers and practitioners argued the exposure of young children to an openly gay guardian or schoolteacher could be harmful (p.92), to present-day attempts to leverage uncertainty to block trans access to sex-segregated bathrooms, prisons, and shelters (p.181).
By Aziza Ahmed
On August 21, 2023, the 11th Circuit issued a decision that allowed a ban on transgender care to go into effect in Alabama. The Alabama ban, formally called the Alabama Vulnerable Child Compassion and Protection Act, is one of the most extreme of the many bans on gender affirming care. The law defines sex as the “biological state of being female or male, based on sex organs, chromosomes and endogenous hormone profiles…genetically encoded into a person at the moment of conception…” and targets physicians who might undermine this notion of sex with criminal prosecution. Their punishment could be up to ten years in prison.
By Ana Santos Rutschman
What can the New York City Marathon experience teach those reflecting on ways to increase equity in the transnational allocation of scarce vaccine doses?
Quite a lot, it turns out. I explore this analogy in a recently published article in the Journal of Law, Medicine and Ethics (JLME), Increasing Equity in the Transnational Allocation of Vaccines Against Emerging Pathogens: A Multi-Modal Approach.
By Marie-Amélie George
A tweet turned Luna Younger’s personal struggle into a national controversy. Using 148 characters, Texas Governor Greg Abbott announced that the Texas Attorney General’s Office and the Texas Department of Family and Protective Services would be investigating the seven-year-old’s family. Prompting his declaration was a jury’s award of custody to Luna’s mother, Anne Georgulas, a pediatrician who supported Luna’s gender transition. A year before the case made its way into court, Luna had asked her parents to call her Luna, rather than her (traditionally male) legal name, to reflect her gender identity. That same year, a therapist diagnosed Luna with gender dysphoria, which is distress from the mismatch between a person’s assigned sex at birth and their gender identity. As a result, medical professionals recommended that Luna be referred to as “she” and be allowed to wear the feminine clothing and keep the long hair that she preferred. Luna’s father, Jeffrey Younger, registered his objection to Luna’s gender identity by shaving her head, even as he allowed Luna’s twin brother to maintain his locks. Georgulas petitioned for an order prohibiting her ex-husband from “engaging in non-affirming behavior and/or taking Luna outside the home as [her birth name], or allowing others to do so.” Jeffrey Younger counterclaimed for sole legal custody.
By Mary Ziegler
As Joanna Wuest writes, the role played by science in the LGBTQ+ movement “is at once a celebratory and cautionary story.” Something similar could be said of struggles over reproductive rights in the half century since the Supreme Court decided Roe v. Wade.
Today, after decades of staying on the sidelines, physicians have once again been at the forefront of struggles over abortion, launching a ballot initiative in Ohio, bringing lawsuits, and speaking against state criminal bans. Physicians’ investment in the struggle — and the scientific arguments they bring to bear — seem like a possible turning point in future struggles over reproductive rights and justice. After all, medical professionals have both special expertise and political capital that could make a difference at a time when disapproval of abortion bans is already high.
But history suggests that arguments based on science have played a far messier role in struggles over reproductive rights. As often as scientific evidence has advanced reproductive rights, abortion foes have used claims about scientific uncertainty to justify new restrictions — and have harnessed claims of biological difference to assert that there is no connection between sex equality and abortion.