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Medical care updates, historic parallels, and more!
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Western Pennsylvania Disability History and Action Consortium

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Pennsylvania COVID‑19 updates: Advocacy for access to medical care

May 2020 

Disability Rights Pennsylvania (DRP), acting alongside other disability advocacy groups, filed a civil rights complaint on April 3, 2020, in response to guidelines for rationing of medical care resources for patients being treated for COVID-19. DRP stated the following:
 
“The PA Guidelines violate Title II of the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act, and Section 1557 of the Patient Protection and Affordable Care Act (ACA). DRP requested a determination that the PA Guidelines discriminate against individuals with disabilities in violation of federal law.”
 
The complaint concerns criteria to prioritize access to COVID-19 treatment. As originally written, PA Guidelines for rationing medical care placed people with particular disabilities at a lower priority for care than people without those disabilities. An additional concern raised by DRP is the possibility of existing care being withdrawn, in particular the reallocation of ventilators already in use by people with disabilities. The formal complaint by DRP is available here.
 
Following the DRP complaint, PA Guidelines were changed to ensure that use of ventilators by people with disabilities will be protected and that care assessments are based on medical data, not assumptions about disability.
 
According to an April 16 press release by DRP, the advocacy group remains concerned about the revised medical care guidelines. Under current guidelines, short-term life expectancy may still be taken into account when making medical care decisions regarding COVID-19. DRP’s April 16 press release recommends that only immediate impact of medical treatment be taken into account rather than pre-existing factors. A second concern is lack of clear wording about proper assessment, appropriate length of treatment, and the communication needs of patients with disabilities.
 
The Pennsylvania Developmental Disabilities Council has compiled resources for people with disabilities, including information on a new healthcare rationing hotline created by DRP. If you or someone else are experiencing discrimination in your healthcare because of a disability, contact DRP at 1-800-692-7334, extension 402.

Historic parallels to the polio epidemic

As public health measures and drastic social changes continue to take effect, parallels are being drawn between this pandemic and the influenza pandemic of 1918. However, the impact of another virus entirely has also left a mark on our collective history, and offers additional parallels.
 
Some of those who lived through the peak of the polio epidemic in the 1940’s and 1950’s are alive today and can recall a time when today’s bizarre circumstances were somewhat commonplace.
 
Polio, the disease caused by a poliovirus that attacks the central nervous system, first broke out in the United States of America in Vermont in 1894. It wasn’t until 1955 that a polio vaccine—developed by Dr. Jonas Salk and a team of researchers at the University of Pittsburgh—passed clinical trials and became available to the public.
 
The decades in between saw repeated spread of polio cases in the summertime; children and young adults were particularly at risk. The CDC’s official information page on polio notes that prior to the development of a vaccine, ”polio outbreaks caused more than 15,000 cases of paralysis each year” during the early 1950’s. Public pools, a hotspot for the virus, were often closed during these times. According to the National Museum of American History overview of how polio impacted communities in America, travel was restricted during polio epidemics. Households where someone was infected were placed under quarantine.
 
Both the symptoms and the treatment of polio bear a resemblance to current information about symptoms and treatment of COVID-19. According to the CDC, most of the people who were infected with the poliovirus did not show symptoms; those that did experienced flu-like symptoms. A much smaller subset of those who contracted polio developed meningitis or paralysis. The poliovirus was spread through person-to-person contact.
 
Where today we hear about the use of ventilators to treat patients with COVID-19, during the polio epidemic machines called iron lungs were used to help paralyzed victims breathe. It was necessary to have ongoing expert medical care to operate the iron lungs and care for the patients inside. In 2018, the University of Pittsburgh Graduate School of Public Health acquired an iron lung, which is on display in its Oakland building.
 
What else does a look at America’s past with polio have to offer us today? Professor Dave Harding—also of the University of Pittsburgh—reflected on this in an April 12, 2020, video. He recalled time spent at the D.T. Watson Hospital as a child with cerebral palsy, as well as what it was like to participate in the polio vaccine clinical trials. You can watch and listen to the full video of his recollections online; the video is captioned.

Honors

Al Condeluci has been named a National Honoree and Nancy Murray named an Essential Change Agent by the National Historic Recognition Project: 2000-2020. The project “recognize[s]…contributions in the field of intellectual and developmental disabilities (IDD)” and “has resulted in a slate of awards that have been presented twice, once in 1999, covering a century, and again in 2020, covering a 20-year span.”
 
Condeluci is co-founder of the Interdependence Network and was CEO of Community Living and Support Services in Pittsburgh until his retirement in 2018. Regarding his honors, Al Condeluci said, “I was deeply honored to be listed as a "National Honoree” […] It is humbling to be listed with so many folks that are heroes to me.”
 
Murray is senior vice president of Achieva and is president of The Arc of Greater Pittsburgh. Murray said in a press release from Achieva, “I am very honored to be included in this group of dynamic disability advocates. And, there is still more we must accomplish to ensure that people with disabilities are truly included in schools, workplaces, places of worship, and communities throughout the United States. I thank my mentors, colleagues, family, and, most of all, the people with disabilities and families who I have learned from and worked with over the years.”
 
Other individuals recognized by the National Historic Recognition Project include Nancy Thaler, former Pennsylvania Deputy Secretary for Developmental Disability Services, as well as James W. Conroy, who was lead investigator in a longitudinal study on Pennhurst State School and Hospital.

Publications

Local author Sara Pyszka published a memoir in March about living with cerebral palsy. According to the synopsis, “This memoir covers three full days, from morning to night, in Sara Pyszka’s life, providing glimpses of past relationships, friendships, schooling, and outrageous stories about the challenges of hiring, firing, and working with personal care assistants. Sara even takes it a step further by providing the occasional comparison between her life and what she imagines life would be like if she did not have a disability.” Pyszka spoke about her decision to write a memoir (and the technology she uses to write) in an interview with South Hills paper The Almanac.
 
Inside My Outside: An Independent Mind in a Dependent Body’ is available as an ebook, audiobook, and paperback through Amazon. You can learn more about Sara and her other writing endeavors on her website.
 
Another recent publication concerns the history of Pennhurst State School and Hospital. Editors Dennis B. Downey and James W. Conroy present essays and first-person accounts that detail the history of deinstitutionalization, including the ‘Suffer the Little Children’ news series. The book includes a foreword by Ginny and Dick Thornburgh.
 
Information on how to order ‘Pennhurst and the Struggle for Disability Rights’ is available on the Penn State University Press website.

Nellie Bly to land at the Pittsburgh International Airport

The Pittsburgh International Airport and the Senator John Heinz History Center have announced the installation of a figure of Nellie Bly at the airport. The figure joins those of Franco Harris and George Washington.
 
Bly, born Elizabeth Cochran, grew up in Armstrong County and wrote for the Pittsburg Dispatch. She later exposed poor conditions in Blackwell Island, a New York asylum. Read the Consortium’s write up of Bly’s historic efforts!

 

Bridget Malley has worked with the Western Pennsylvania Disability History and Action Consortium as a Preservation Scholar since January 2019. She currently serves as a steering committee member with the Society of American Archivists’ Accessibility and Disability Section. 
ADA30 Logo
ADA 30 Logo in red and blue featuring symbols representing people with disabilities. Text reads: 'ADA for Allegheny County & Pittsburgh - ADA30 Americans with Disabilities Act 1990-2020: 30 Years Strong.'

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