CW: Ableism, Ageism, Eugenics, Poverty, & Death
Like many others, I have found this week to be emotionally draining. I made sure to take daily breaks from social media and the news. As much as I love technology, I need time away from the constant barrage of information.
I found comfort in watching my favorite sports, and holiday movies. It was a good opportunity to just relax and rest. I knew I needed a break from the news.
I watched Rudolph the Red-Nosed Reindeer on Wednesday and The Polar Express on Thursday. Watching my childhood favorites is calming. I have also been watching the Boston Celtics and The Pittsburgh Penguins. Sports bring me joy.
As a disabled person, the future is uncertain. I rely on Medicaid and other programs to live in my community. There is a possibility that lifetime limits would be imposed for Medicaid beneficiaries. For me, this would be devastating, because I’ll need Medicaid coverage for the rest of my life.
Medicaid is the only insurance program that provides coverage for home and community-based services. There are many different types of home and community-based services available under Medicaid. Examples of covered home and community-based services include physical, occupational, and speech therapies, durable medical equipment, home healthcare, home-delivered meals, and dietary management. These services are intended to help people remain in their communities.
In my case, Massachusetts Medicaid provides the funding for my PCAs (Personal Care Assistants). My PCA helps me with activities of daily living, including bathing, dressing, and toileting. Without Medicaid, I wouldn’t be able to pay for PCA services, which cost more than $50,000 annually.
I have received SSI (Supplemental Security Income) since 2016. Because cerebral palsy affects my ability to work, SSI provides monthly payments that allow me to pay my bills. I currently receive $973.40 a month. Social Security could be facing drastic cuts in the near future.
In September, the Biden administration announced new guidelines that reduce penalties for people who receive SSI along with SNAP benefits or informal support from friends or family. It was life-changing for people like Juana Torres, a 36-year-old single mother in Philadelphia who expects to receive $140 more per month in SSI as a result of the policy change. Those changes could come to an end under the Trump Administration.
I am also an international adoptee. I was born in Kolkata, India in 1999. There are thousands of people just like me who are not American citizens, despite being adopted by parents living in the United States. For them, the fear of deportation is very real.
Thinking about the future makes me nervous. No one knows what the future holds. Decisions made in Washington D.C. will affect most Americans, albeit in different ways.
The last four years have shown us that much of the country seems to think disabled people’s lives are not important. We were seen as disposable during the height of the COVID-19 pandemic. Often, hospitals didn’t think disabled people’s lives were worth saving.
Sarah McSweeney, who died from COVID-19 in 2020, had cerebral palsy. The doctors were puzzled by a document that the staff at McSweeney’s group home brought with them. It was a legal document outlining the medical care that McSweeney, who couldn’t speak, desired.
The staff didn’t understand why it wasn’t a DNR. A do-not-resuscitate order is a legal document issued by a physician stating that you do not wish to be resuscitated in the event of an emergency. Given events like this, it shouldn’t come as a surprise that COVID-19 was also the top cause of death among people with intellectual disabilities, cerebral palsy, and Down syndrome in 2020, according to a study done by Scott Landes, Ph.D. a professor of sociology at Syracuse University.
Mask bans have also put the disability community at risk. In August, Nassau County, NY made it illegal to wear face coverings in public. Those who broke the law could be fined and imprisoned. In North Carolina, a similar ban was passed. It did include a health exemption, but only after disability advocates pushed for it.
Disability and age were also used as talking points in the election. The cover of The Economist’s July 6th issue features a walker with the President of the United States seal on the front. Next to it is the phrase, “No Way to Run a Country.” People of all ages use walkers, including me. Using a walker or other mobility aid is in no way indicative of someone’s fitness to be president.
President-Elect Trump has also made many disparaging comments regarding disabled people, including his great-nephew. Fred Trump III says that his uncle told him that people with intellectual and developmental disabilities “should just die.” Fred Trump III has a 25-year-old son William who lives with a rare genetic mutation called KCNQ2.
For some disabled people who are part of another minority group, the outcome of Tuesday’s events may have them even more concerned. Disabled people are more likely to be members of the LGBTQ community. A 2023 study conducted by Chris R. Surfus, Ph.D. found that the LGBTQ population as a whole had a 156% higher prevalence of disability than non-LGBT people, while transgender people had a 281% higher prevalence.
After the election results were announced, The Trevor Project saw a 700% spike in calls, messages, and chats compared to previous weeks. The organization provides a lifeline for LGBTQ+ youth who are experiencing despair, self-harm, or suicidal ideation while coming out to their family or experiencing discrimination.
The next four years will be challenging. Many people are scared right now. They are worried for themselves, their family members, and their friends. Human rights are more than discussion points for news articles, speeches, and interviews. People should not have to worry about their rights being taken away.
Despite the divisive nature of current events, I refuse to give up hope. There’s still plenty of joy and kindness in the world. Do things that bring you joy, stand up for what is right, listen to others, and show them you care. We should all try to find the light in every day.
Sources:
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Costello, Kaitlin. “Mask Bans Disenfranchise Millions of Americans with Disabilities.” STAT, Boston Globe Media, 23 Aug. 2024, http://www.statnews.com/2024/08/20/mask-bans-nassau-county-north-carolina-new-york-disabled-rights/.
Diament, Michelle. “What Trump’s Win Could Mean for Medicaid, Disability Programs.” Disability Scoop, Disability Scoop, 8 Nov. 2024, http://www.disabilityscoop.com/2024/11/08/what-trumps-win-could-mean-for-medicaid-disability-programs/31153/.
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Garcia, Eric. “Biden Is Wrong. the Pandemic Isn’t over for Disabled Americans.” MSNBC, NBCUniversal News Group, 23 Sept. 2022, https://www.msnbc.com/opinion/msnbc-opinion/biden-wrong-pandemic-isn-t-over-disabled-americans-n1299051.
Galofaro, Claire, and Kim Tong-Hyung. “Thousands of Children Adopted by Americans Are without Citizenship. Congress Is Unwilling to Act.” AP News, AP News, 25 Oct. 2024, apnews.com/article/adoption-citizenship-immigration-congress-0c71631786c35f7042ff99726e9dcd23.
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Park, Edwin. “Project 2025 Blueprint Also Includes Draconian Cuts to Medicaid.” Center For Children and Families, Georgetown University , 25 June 2024, ccf.georgetown.edu/2024/06/17/project-2025-blueprint-also-includes-draconian-cuts-to-medicaid/
Rummler, Orion. “Crisis Calls from LGBTQ+ Youth Spiked by 700 Percent after Election Day.” The 19th, The 19th, 8 Nov. 2024, 19thnews.org/2024/11/election-lgbtq-youth-crisis-calls/.
Shapiro, Joseph. “As Hospitals Fear Being Overwhelmed By COVID-19, Do The Disabled Get The Same Access? .” NPR, NPR, 14 Dec. 2020, https://www.npr.org/2020/12/14/945056176/as-hospitals-fear-being-overwhelmed-by-covid-19-do-the-disabled-get-the-same-acc.
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Trump, Fred C. “Donald Trump Told Me Disabled Americans ‘Should Just Die.’” Time, Time USA, LLC. , 24 July 2024, time.com/7002003/donald-trump-disabled-americans-all-in-the-family/.