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My first-ever blog post promoted person-first language when discussing people with disabilities, but some disabled people are advocating for identity-first language. We can embrace our disabilities as part of our identities in this way. It’s important to ask the people, when possible, the language they prefer to be used to describe them. If you’re curious about the reasons for the recent resurgence in identity-first language, here’s a summary of “Yes, You Can Call Me Disabled” by Anjali J. Forber-Platt, assistant professor at Vanderbilt University. Disability can be something to be proud of, but person-first language minimizes that point of pride. This pride could lead to positive changes for disabled people, such as improved access to resources and higher employment rates in more rewarding careers (thanks to reasonable accommodations). Forber-Platt says, “Intentional avoidance of the term disability sends the message that there’s something inherently negative or bad about having a disability. And disabled people are tired of non-disabled people telling us what they think is best for us.” Watch for further discussion of the benefits of hiring disabled employees in a future post. Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel{a}gmail.com.
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Did you know a plant-based diet could decrease cancer risk by 13% and heart disease risk by 20%? Did you know animal agriculture causes even more greenhouse gasses than all forms of transportation combined? These are just two statistical findings reported in OMD: The Simple, Plant-Based Program by Suzy Cameron, wife of screenwriter and director James Cameron. While the bulk of this book reports the environmental and health benefits of eating more plant-based (aka vegan) meals, there are also personal anecdotes of the pleasures of eating this way and recipes. An alternative title for this book would be “No More Beef.” Some subtle promotion of the school the author founded is included but does not detract from the message of the book. Unlike other vegan lifestyle books I’ve read, this one doesn’t pressure you to become 100% vegan but strongly encourages changing just one meal per day. That is a very doable change, especially with Cameron’s product recommendations and suggested meal plan. Without knowing about this book, I began making my breakfasts and often my lunches vegan in February. I remain committed to eating one vegan meal per day. Although I haven’t noticed any obvious health improvements from this approach, my body is prone not to recognize what’s good for it (thanks to a case of ME/CFS). Plus, I trust the benefits will be seen later in life when I have fewer age-related conditions, such as heart disease. I also like not worrying as much about the maltreatment of animals that I’m encouraging by consuming their products or worrying as much about my impact on greenhouse gasses and water consumption. I heartily recommend this book to anyone interested in taking a small yet powerful step to improve their health and the environment.  Photo: Stefano Corso, Flickr Creative Commons Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel{a}gmail.com.
Did you know there is a scholarly field called disability studies, and did you know there is a disability justice movement? Both shed light on the experiences and societal needs of people with disabilities and seek the inclusion of a historically shunned group. To learn more about disability justice, read the works of activist Tobin Siebers and check out the Twitter hashtags #ThingsDisabledPeopleKnow and #DisabledAndCute. Quote from Siebers: “Disability marks the last frontier of unquestioned inferiority because the preference for able-bodiedness makes it extremely difficult to embrace disabled people and to recognize their unnecessary and violent exclusion from society” (Tobin Siebers, quoted in Amanda Leduc, Disfigured, page 209). Read my review of Disfigured below. Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel{a}gmail.com.
Amanda Leduc’s Disfigured: On Fairy Tales, Disability, and Making Space opens our eyes to how the portrayal of disabilities in fairy tales sets children up to shun disabled people, and she advocates for more accurate narratives of these excluded people. She weaves in her personal account of growing up with cerebral palsy, which keeps the book from becoming a scholarly work inaccessible to the majority of readers. You’ll never view the Disney princesses the same way again. This book was educational even for someone who has spent 10 years creating and sharing her own narrative of life with a disabling chronic illness that doesn’t have the classic fairytale happy ending, an ending which, according to Leduc, is not only unrealistic but also psychologically unhealthy. Great quotes from the book: “We exist in a world where happiness is synonymous with not being disabled—anything less than this comes across as undeserving, simply through virtue of not meeting the able-bodied ideal” (page 210). “This conceptualization of disability—at best merely a metaphor for psychological ills that can be overcome, at worse a punishment or judgment that can be reversed through magical or spiritual means, though only if one deserves it—does a disservice to the actual lived experience of what it means to occupy a different body in the world….denying the lived reality of what it means to be a disabled body in the world denies the possibility of growth on the disabled person’s terms” (page 216).  A girl of color with cerebral palsy walks. Photo: Exceed Worldwide, Flickr Creative Commons Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel{a}gmail.com.
“Obesity is expected to affect 1 in 2 adults by 2030” (Ward ZJ, et al. Projected U.S. state-level prevalence of adult obesity and severe obesity. New England Journal of Medicine). The word is not “overweight” but “obesity.” That is huge and frightening and may overwhelm American health care and health care insurance providers more than coronavirus has. Speaking of COVID-19, where I live, the only deaths I’m aware of from the virus have been of people who are very old or obese. Obesity kills. For example, it makes you more susceptible to various cancers, cardiovascular diseases, and dementia. Losing weight may not be easy, but you have to start somewhere. Here are ways I stay in shape:
 Walking is the most basic exercise. Photo: Jo Zimny Photos, Flickr Creative Commons Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel{a}gmail.com.
In July I attended a virtual summit for people with chronic illnesses hosted by Lisa Sniderman. The speakers included practitioners, counselors, and patients, and for me two interviewees stood out: Danielle Lowe (music therapist for people with mental health conditions) and Amy Oestreicher (author, health advocate, and survivor of an exploded stomach). Lowe said, “So I guess what I would offer up is to, even though it can be hard sometimes, to advocate for ourselves, to make an effort to advocate for yourself when it’s difficult for what you need, whether it’s an accommodation or extra time or a different appointment or extra appointment, less appointments, to really check in with yourself for what you’re needing and ask for it. And if the other person isn’t willing to kind of accept that then you shouldn’t, you should find someone that will, and never be afraid [of] asking for what you need or for more help.” Oestreicher said, “Hope isn’t like this inspirational beam of light that’s just like, ‘Okay, I am going to have hope.’ Hope is like a job that we have to actively create….Hope is the fuel that gets us down a road that’s uncertain.” If you want additional lessons learned from chronic illness, email me, and I’ll send them your way!  Hope gets us down uncertain roads. Photo: Jamie McCaffrey, Flickr Creative Commons Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel{a}gmail.com.
“At nearly 20 percent of the U.S. population, people with disabilities represent one of the largest minority groups, but it has often been an overlooked one. That may be changing with a new wave of activism by those who want to change the way disability is viewed in the U.S.” —National Center on Disability and Journalism’s website We’re not seeing as much representation of people with visible and invisible disabilities in the media as we should given the recent surge in diversity/inclusiveness campaigns. Have you seen efforts to ensure vulnerable patients have easy access to personal protective equipment? Have you seen people using mobility aids or service animals in those ads that harp on how “we’re all in this together”? Now is the time to assert that our lives and our needs matter, too, and ought to be in the spotlight rather than shoved off to one side. What can people without disabilities do? Start by watching your language. Unless we ask to be called crippled, handicapped, impaired, or suffering, don’t call us that. We are people with disabilities, not the lifeless-sounding “the disabled.” Ask us whether and how we want our conditions mentioned in your writing and speeches. Then listen to us! You can learn more about acceptable versus unacceptable terms to use at the website mentioned above. The Americans with Disabilities Act was passed on July 26, 1990. #NCDJ30for30 Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email Darla.Nagel{a}gmail.com.
 I'm singing in my "recording studio." I had the time and physical energy to write a book while staying home, but my heart led me toward music instead of writing. The people closest to me seemed to need comfort, the focus of my singing, rather than spurring to action, the focus of my nonfiction writing. With help and inspiration from Audacity, YouTube, and Flickr, I’ve posted a few personal music videos on Facebook. You can see my video of Twila Paris’s “How Beautiful” here. I will write again, but for now, I’m expressing my voice musically. Don’t be afraid to make your voice heard in a new way if that will reach your audience! Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel{a}gmail.com.
“Attitude is not everything, but it's almost everything.” —Mary Pipher This is a good quote to keep in mind as we rebuild following the worst of the COVID-19 pandemic. Happy Fourth of July, everyone! Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel{a}gmail.com.
Solve ME/CFS is a nonprofit that supports scientific research and physician and caregiver education on ME. Patients benefit from its research grants and free educational newsletter and webinars. I like keeping up with research developments and learning names of scientists who are interested in exploring ME. Without a new generation of researchers and clinicians focused on ME, we will lose the little progress we’ve made in the past decade. SolveMECFS.org has a large website, so I’ll narrow it down to the most useful parts: patient resources, whose audience ranges from those who don’t know what ME is to those who’ve lived with it for years, and scientific initiatives, including links to a patient biobank registry and patient narratives for medical professionals. This resource has been added to my list of resources for patients with ME or fibromyalgia. With Solve ME/CFS, you can get involved in advocacy campaigns or simply learn more about your diagnosis. If there are other resources you’d like me to share, let me know in the comments! Darla Nagel is a biomedical copy editor who has an invisible chronic illness. She wants to educate healthcare professionals and encourage patients. If you want to receive quarterly updates from her, email darla.nagel{a}gmail.com.
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