Summer 2021 Publication

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THE COVID-19 PANDEMICAND THE DISABILITYPARADOXKATHERINE YANAccording to the Office of NationalStatistics, as reported by the BBC (2021),six in ten people who died from COVID-19 in the UK last year had disabilities.At first glance, this statistic might bedistressing, but not especially surprising— after all, it makes sense thatdisabilities mean poorer health, andlower chances of survival. It makes sensethat there’s a disproportionate amount ofpeople with disabilities getting infectedin the first place, as many of them eitherlive in group homes or are low-paidessential workers, reliant on publictransportation (a problem unto itself).The presence of Intellectual andDevelopmental Disorders (IDDs) is thehighest predictor of coronavirus fatality,outside of age,¹ which might make anawful sort of sense… until you realizethat IDDs beat out heart failure, chronickidney diseases, and cancers —including lung cancer, the only of the 15conditions analysed in a study thatrivalled IDDs’ threefold increase in deathrates — as a risk factor.²Of course, most IDDs come with manyunderlying health conditions that play amajor role in death rates, but what is alsonotable is that while patients with IDDshave a higher rate of hospital admittanceand a higher rate of coronavirus mortalityfollowing that admittance, there is nocorresponding increase in admission ratesinto the Intensive Care Unit (ICU).¹What does this all mean?Patients with disabilities are dying, andthey aren’t receiving the higher levels ofcare they need.Michael Hickson, a quadriplegic, wasadmitted into Austin Hospital in Junelast year.³ ⁴ He was put on a ventilatorwhen his condition became serious, but,when it further worsened, his wife,Melissa Hickson, was told that he wouldbe moved out of the ICU and into hospicecare. He would not be intubated. Hewould not be receiving hydration,nutrition, or resuscitation. Essentially, hewas left in a comfortable place to die.When Melissa called the hospital to askwhy her husband wouldn’t be receiving(Image Credit: Pixabay)further treatment, she wasn’t told any ofthe more valid reasons that treatmentwould be futile — his sepsis, pneumonia,multiple organ failure, low chances ofsurvival. Instead, the attending physician,in the recorded call, informed her thatthey would not aggressively pursuetreatment because of “his quality of life— he doesn’t have much of one.”“What do you mean? Because he’sparalyzed with a brain injury, he doesn’thave quality of life?” she had asked.“Correct.”Nobody made decisions based on whatMichael Hickson, or his wife, or his fivechildren, thought of his “quality of life”— that right was taken away. MichaelHickson died on June 11.The hospital denied that this decisionwas based on his disability, but, givenwhat the doctor had said on the phone,could that really have played no role?This isn’t an isolated incident. Researchshows that doctors tend to rate the10| SUMMER 2021
quality of life of someone with disabilitiesmuch, much lower than the personthemself would rate it. This is theDisability Paradox.Sarah McSweeny was a woman fromOregon with multiple disabilities, unableto walk or talk. When she was admittedinto the hospital, she carried a legaldocument that stated she wanted any andall life-saving treatment.⁵ ⁶She stayed at the hospital for the nextthree weeks, during which she developedsevere pneumonia. The doctor agreedthat a ventilator was critical, and thenproceeded to insist on having McSweeny’scare document rewritten with an order tonot resuscitate or intubate. An order todeny her that very ventilator — at a timewhen, as should be noted, there was noshortage.One of her caretakers was told that itwas a matter of risk versus quality of life.“But she has quality of life.”“Oh, can she walk? Can she talk?”No, she couldn’t, but she loved countrymusic and makeup and having her hairdone. She couldn’t eat solid food, but sheloved going to malls and laughing andmaking her friends laugh with her.Sarah McSweeny died in that hospital,but she had wanted to live.The same stories pop up again and again:denial of treatment, equipment,assumptions on a patient’s quality of life.Pressure for admitted disabled or elderlypatients to sign “Do Not Resuscitate”orders they might not even understand.⁴Lack of, or even cuts in funding forcoronavirus protection in group homes,despite the most vulnerable patientsresiding there.⁷ Early in the pandemic, inthe UK, many general practitioners evenassigned blanket DNRs to over fivehundred disabled and elderly care homeresidents, without consulting them ortheir families — and around a third werestill in place in December.⁸ ⁹It’s easy to discriminate against peoplewith disabilities, thinking their lives orthe love their families hold for them aslesser. It’s easy to tell the vulnerable tostay shut in their homes so the rest of usdon’t have to, as if their freedom is worthany less. It’s easy to be less thatstringent in precautionary measures whenthose most likely to die for it are thefaceless, the “expendable”, inwheelchairs or care homes. Easy.Should it be?References[1] Gleason, J., Ross, W., Fossi, A.,Blonsky, H., Tobias, J., & Stephens, M.(2021, March 5). The Devastating Impactof Covid-19 on Individuals withIntellectual Disabilities in the UnitedStates, Nejm Catalyst.https://catalyst.nejm.org/doi/full/10.1056/CAT.21.0051.[2] Diament, M. (2020, November 16).Mounting Evidence Points To SeriousCOVID-19 Risk For Those With IDD,DisabilityScoop.https://www.disabilityscoop.com/2020/11/16/mounting-evidence-points-toserious-covid-19-risk-for-those-withidd/29084/.[3] Roberts, K. (2020, June 29). AustinHospital Withheld Treatment fromDisabled Man Who ContractedCoronavirus, The Texan.https://thetexan.news/austin-hospitalwithheld-treatment-from-disabled-manwho-contracted-coronavirus/.[4] Shapiro, J. (2020, July 31). OneMan's COVID-19 Death Raises The WorstFears Of Many People With Disabilities,NPR.https://www.npr.org/2020/07/31/896882268/one-mans-covid-19-death-raisesthe-worst-fears-of-many-people-withdisabilities.[5] Shapiro, J. (2020, December 14). AsHospitals Fear Being Overwhelmed ByCOVID-19, Do The Disabled Get TheSame Access?, NPR.https://www.npr.org/2020/12/14/945056176/as-hospitals-fear-beingoverwhelmed-by-covid-19-do-thedisabled-get-the-same-acc.[6] Kinross, L. (2021, January 1). Howableism influences who gets care during apandemic, Holland Bloorview.https://hollandbloorview.ca/storiesnews-events/BLOOM-Blog/how-ableisminfluences-who-gets-care-duringpandemic.[7] Shapiro, J. (2020, June 9). COVID-19Infections And Deaths Are Higher AmongThose With Intellectual Disabilities, NPR.https://www.npr.org/2020/06/09/872401607/covid-19-infections-and-deaths-arehigher-among-those-with-intellectualdisabilities.[8] Booth, R. (2020, April 1). UKhealthcare regulator brands resuscitationstrategy unacceptable, The Guardian.https://www.theguardian.com/world/2020/apr/01/uk-healthcare-regulatorbrands-resuscitation-strategyunacceptable.[9] Covid-19: Concern over 'do notresuscitate' decisions during pandemic(2021, March 18), BBC News.https://www.bbc.com/news/health-56435428.[10] Covid: Disabled people account forsix in 10 deaths in England last year -ONS (2021, February 11), BBC News.https://www.bbc.com/news/uk-56033813ABOUT THE AUTHORKatherine Yan is a high school studentin King George V School in Hong Kongand is passionate about socialequality. Her hobbies include readingand writing.EUNOIA GLOBAL HEALTH |11
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Summer 2021 Publication

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