Medical professionals regularly joke about their patients' problems. Some of these jokes are clearly wrong, but are all jokes wrong?

Medical professionals regularly joke about their patients' problems. Some of these jokes are clearly wrong, but are all jokes wrong?

In this essay, we suggest practical ways to shift the framing of crisis standards of care toward disability justice. We elaborate on the vision statement provided in the 2010 Institute of Medicine (National Academy of Medicine) “Summary of Guidance for Establishing Crisis Standards of Care for Use in Disaster Situations,” which emphasizes fairness; equitable processes; community and provider engagement, education, and communication; and the rule of law. We argue that interpreting these elements through disability justice entails a commitment to both (...) distributive and recognitive justice. The disability rights movement's demand “Nothing about us, without us” requires substantive inclusion of disabled people in decision‐making related to their interests, including in crisis planning before, during, and after a pandemic like Covid‐19. (shrink)

In discussions of medical decision making as it applies to people with disabilities, a major obstacle stands in the way: the perceptions and values of disabled people and of many nondisabled people, regarding virtually the whole range of current health and medical-ethical issues, seem frequently to conflict with one another. This divergence in part grows out of the sense, common among people with disabilities, that their interactions with “the helping professions,” medical and social service professionals, are adversarial. But those differences (...) of opinion also stem more basically from a clash of fundamental values.This paper addresses, in historical perspective, the ways in which the status of persons with disabilities as a stigmatized minority group affects medical decision making. It also examines the efforts of disability rights activists to prevent discrimination against persons with disabilities in current medical culture. Finally, it raises questions about how the rights of people with disabilities will fare as new care standards are developed and implemented. (shrink)

Contemporary bioethics has been somewhat skewed by its focus on high-tech medicine and the resulting development of ethical frameworks based on an acute-care model of healthcare. Research and scholarship in bioethics have payed only cursory attention to ethical issues related to disability. I argue that bioethics should concern itself with the full range of theoretical and practical issues related to disability. This encounter with the disability community will enrich bioethics and, potentially, society as well. I suggest a number of items (...) that the bioethics agenda should include, such as the development of a casuistry of the right to healthcare and to community integration and an advocacy role in fostering an understanding among the public and policy makers of the need to reform research and treatment related to disability. (shrink)

This chapter contains sections titled: Introduction What Is the Problem? Why Try to Change the Profession? The Challenges Epistemic Responsibility and Credibility Why the Personal Is Philosophical Is Political References.

Arguments in favor of legalized assisted suicide often center on issues of personal privacy and freedom of choice over one's body. Many disability advocates assert, however, that autonomy arguments neglect the complex sociopolitical determinants of despair for people with disabilities. Specifically, they argue that social approval of suicide for individuals with irreversible conditions is discriminatory and that relaxing restrictions on assisted suicide would jeopardize, not advance, the freedom of persons with disabilities to direct the lives they choose. This paper examines (...) the idea promoted by some proponents of assisted suicide that it is reasonable to be depressed about one's diminished quality of life in cases of irreversible illness or disability and, therefore, such depression should not call into question the individual's competence to request assistance in dying. The concept of rational depression is defined and examined in the context of: four real-life cases involving individuals with disabilities who requested assistance in dying; a set of criteria commonly applied to decision-making to determine rationality; and research bearing on the emotional status of people with disabilities. It is concluded that although disability is associated with particular socially mediated stressors, there is no theoretical or empirical evidence to indicate that depression and its role in the right to die is dynamically different, more natural, or more reasonable for disabled people than for non-disabled people. (shrink)

we always get to this difficult conversation one way or another when I'm talking to friends who have kids with disabilities. It goes like this: "If there had been a test for autism when my wife was pregnant with our son," my close friend tells me, "she would definitely have had an abortion." He tells me this with candor because he knows I know that this does not mean that he regrets having the son, grown up now, that they do (...) have. Parents with disabled children are usually rightfully wary about engaging in such conversations, but perhaps because I have a significant congenital genetic disability myself, we talk together about this with intimacy and mutual understanding. With his reflection about what we now... (shrink)

:Since the advent of recombinant DNA technology, expectations about the potential for altering genes and controlling our biology at the fundamental level have been sky high. These expectations have gone largely unfulfilled. But though the dream of being able to control our biology is still far off, gene editing research has made enormous strides toward potential clinical use. This paper argues that when it comes to determining permissible uses of gene editing in one important medical context—germline intervention in reproductive medicine—issues (...) about enhancement and eugenics are, for the foreseeable future, a red herring. Current translational goals for gene editing research involve a different kind of editing than would be required to achieve manipulation of complex traits such as intelligence, and there are more pressing questions that need attention if clinical use of gene editing in reproductive medicine ever becomes a possibility. (shrink)

Under other circumstances, I would have written an academic paper rehearsing the arguments for and against legalization of physician-assisted suicide: autonomy and the avoidance of pain and suffering on the pro side, the wrongness of killing, the integrity of the medical profession, and the risk of abuse, the “slippery slope,” on the con side. I’ve always supported the pro side. What this paper is, however, is a highly personal account of the challenges to my thinking about right-to-die issues. In November (...) 2008, my husband suffered a C2/C3 spinal cord injury in a bicycle collision, leaving him ventilator-dependent, almost completely paralyzed, and in the hospital—but fully alert and profoundly self-reflective. What if he wanted to die? This paper draws from two multimedia presentations—file:///Users/margaretbattin/Documents/BROOKE’S%20ACCIDENT/The%20Salt%20Lake%20Tribune %20%7C%20Multimedia:%20Metamorphosis.webarchive and file:///Users/margaretbattin/Documents/BROOKE’S%20ACCIDENT/The%20Salt%20Lake%20Tribune%20%7C%20Multi media:%20Learning%20to%20live%20again.webarchive—and personal material concerning quality of life (he’d rank at the bottom on the SF-36 and similar scales) and concerning autonomy (his own accounts, verbatim). This is a detailed portrait of a man whose life involves extraordinary suffering but also luminous experience some of the time. It only makes the question harder: What if he wanted to die? (shrink)

People with disabilities use more medical care and see health professionals more often than do those of the same age, ethnic group, or economic class who do not have impairments. An indisputable medical goal is.