My Brother Is Still Unvaccinated Because Our Medical System Is Ableist
Recent research has shown that people with intellectual disabilities, autism spectrum disorders, or other mental conditions are more likely to contract COVID-19, as well as having severer cases. Based on my brother’s experience, I know one reason why: ableism.
“He needs sedation!” Mom explained to the medical team. “He is not going to tolerate you placing an IV. He may hurt someone!”
My brother only has limited speech abilities so mom spoke on his behalf. The intravenous line was still placed by the medical team. My brother started to fight back, hitting nurses and scratching doctors. My brother, a chestnut-skinned man with autism spectrum disorder, was approached by a medical technician who passed the room. The medical tech did not see a struggling man with autism spectrum disorder—my brother—he saw a problem. “You need any help, doc?” asked the medical tech poking his head through the doorway. “No, we’re okay here,” the doctor responded. Mid-struggle, my brother stopped breathing. The blue eyes of the doctor tech reflected his deep brown eyes. “Help, please,” my brother said clearly.
As my brother experienced, when patients with autism go to the hospital, they often get turned down by it. They are not given the help they require and the staff do not show them the compassion that they should. As a young doctor I saw colleagues gasp when an autism patient was admitted. “Ugh, this is going to be a lot of work.” “Yes,” I replied, frowning at my colleague. “Yes, it is.” 2.2 % of adults currently have autism spectrum disorder. 1 in 3 people with autism have a severe form—and are minimally verbal—yet severe forms of autism have been understudied. As most research studies are focused on autism in children or adolescents, adults with severe autism have been neglected. Autism patients are more likely than others to suffer from psychiatric and medical conditions. Some of these illnesses could be prevented or reduced with preventative treatment. However, patients with autism are less likely than others to be provided routine healthcare, such as dental and vaccinations. Additionally, the use of medical services drops when they become adults. Unfortunately, the majority of healthcare providers don’t have the necessary training or experience to help patients diagnosed with autism. The result is poor.
My brother had difficulty getting decent medical treatment even before the pandemic. He was not treated any differently after COVID-19 became available. He was not allowed to get the vaccine even though my parents, who are a doctor and pharmacist, continued to advocate that he receive it. They are his guardians and make all medical decisions on my brother’s behalf, as he is not able to. My brother refused to go to vaccination clinics as he could not tolerate needles being stuck into his arm without sedation. The vaccine was not available to my brother’s dentist who sedates him every year for routine dental cleanings and lab tests. The primary physician did not coordinate the vaccination for my brother. Autism advocacy websites are full of useful documents that promote vaccination for autistic individuals. Individuals with autism were not given any resources. I tried to leave voicemail messages for advocates of autism, but was never heard from again.
My brother lives in St. Louis and I wanted to reach out to an emergency room physician. We were friends and classmates from medical school, so I felt hopeful that she would be able to assist me. “I would balk at giving sedation for a vaccine,” she said. She went on to robotically relay the burden of vaccinating my brother, citing that she did not want to be liable if my brother hurt someone, that the emergency department was too busy to monitor someone receiving oral sedation for a mere vaccine, and that it was a “primary care physician problem.” “No, it’s my brother’s problem,” I responded.
Many reports have been written about the non-vaccinated. However, there are many people who do not have vaccinations and suffer from severe autism spectrum disorders, intellectual disabilities, or any other mental illness.
Many people are not vaccinated due to the failure of an ableist system. Recent research showed that people with autism spectrum disorders, such as autism, are three times more likely to be diagnosed with COVID-19. There are no evidences that the vaccine is not available for individuals diagnosed with autism spectrum disorders or severe mental illnesses. It is offensive to speculate about why individuals with autism and other mental illnesses are more vulnerable to COVID-19 without considering the impact of ableism—without considering that they may be denied the COVID-19 vaccine because they need disability accommodations.
To be certain, adults with severe autism, or mental illnesses, will require extra staff either to hold patients, or to make sure they don’t have any adverse reactions to sedation. And if the moral weight of discrimination due to disability does not sway you, then let’s look at the costs and benefits. These individuals will be 29 times more likely than others to get COVID-19 if they don’t receive special accommodation and are refused the vaccine. This adds to the millions of dollars that healthcare costs and the burden it places on the medical staff.
No doubt primary care physicians must lead this coordination of care. This burden shouldn’t fall on the emergency room physicians or staff. The federal government could also provide additional funding for federally certified health centers to allow them to offer special accommodation to disabled people to obtain the COVID-19 vaccine. Additional funding could be provided by the federal government to emergency departments to enable them to provide the necessary staffing and support to safely administer the vaccine to patients with disabilities. Regardless of what, my brother is in dire need and the timer is running out. I pray that the medical system will soon step up. My brother still has not been vaccinated. He deserves it.