Not Dead Yet, with partners the Disability Rights Education & Defense Fund and the Patients Rights Action Fund, have assembled a total of 30 disability rights and racial justice organizations to support further regulatory action by the U.S. Department of Health and Human Services Office for Civil Rights. Specifically, the groups are urging the formal […]
Racial disparities in healthcare have always existed but it’s only been recently that it has been openly discussed as a serious issue in this country. Blacks and communities of color have always known about it because we experience it ourselves, first-hand. Studies show that we receive inferior healthcare compared to Whites. Little by little, the […]
Last Thursday, Not Dead Yet was one of “over 70 individual patients and patient organizations” that joined the Partnership to Improve Patient Care (PIPC) in a letter to the Department of Health and Human Services (HHS), calling for recognition of us as stakeholders in the Better, Smarter, Healthier initiative and in the Health Care Payment Learning and Action Network. […]
For about a week now, activists and advocates have been engaging in the fight to safeguard the health and safety of Amanda Baggs, one woman dealing with medical ignorance, apparent bigotry, and regular messages that her life isn’t one worth saving. Even now, a positive outcome isn’t assured. (I direct blog readers to just peruse […]
It’s been a few days since an update on Amanda Baggs and her struggle to get past medical discrimination and get appropriate medical treatment has been shared here. The good news is that the news of her scheduled surgery was true and her feeding tube is now in place. Now the bad news: In “So […]
Before I start with the specifics, here’s the short version – due to the overwhelming response of disability activists and allies, things changed for the better in terms of communication and setting an agenda for surgery – placement of a feeding tube that will hopefully prevent the frequent bouts Amanda Baggs has had with aspiration […]
Amanda Bagg’s name and work should be familiar to a lot of people in the disability community. A lot of people might remember reading her blog essay “If I am killed” on our old site, where it was reproduced with permission – and will be put up again in the near future. Many more will […]
As of today, Bill Peace’s essay “Comfort Care as Denial of Personhood” is online – and accompanied by three commentaries available at the Hasting Center Bioethics Blog. Here’s what we wrote before about the experience at the center of Bill’s essay: Back in 2010, our friend, colleague and ally Bill Peace, experienced a long, expensive […]
Recently, Diane Coleman wrote about new proposals to increase the pool of donor organs, and that have particularly disturbing ramifications in terms of the care and treatment of newly disabled individuals. We already know that organ transplant teams are more than willing to obtain organs from individuals with long-term disabilities, as highlighted by the case […]
