Ethics of Accessibility in a Global Pandemic
[Writer’s Note: I decided to place quotation marks around the word disabled throughout this piece, intending for it to serve as an invitation to explore the stigma the word carries and how it can be positively transmuted to represent an objective reality without any predispositions about an individual’s intellectual capabilities.]
We have been dealing with the COVID-19 Pandemic for almost two years now, and there is no foreseeable change in the near immediate future. All of our lives have been tremendously impacted and changed throughout multiple spheres of our public and private lives.
As a “disabled” individual who is profoundly deaf in both ears with a Cochlear Implant (CI), the government mandates implemented have ultimately created a wide array of barriers to accessibility in a majority of my public experiences and interactions. As someone who is Deaf, and presents as Hard-of-Hearing while using a CI, masks are a significant barrier to my communication ability and accessibility. Reading lips simply is impossible if one’s mouth is not visible, and the masks themselves reduce the ability of sound to travel clearly.
I would like to provide a personal experience of lack of accessibility as a case to be analyzed in terms of the ethics of healthcare, and in the ethics of government and law.
For the past three months, I have been visiting St. Luke’s Urgent Care Facility for a worker’s compensation claim. I had made it clear from the initial appointment that I am disabled, therefore protected by the ADA in having the proper and necessary accommodations provided. I had also made clear that if I had a parent accompanying me to an appointment, it was for hearing accommodation, as I am profoundly deaf in both ears with a CI on my right. At no point in the past three months had St. Luke’s Urgent Care made an attempt to provide clear masks for the doctors who I am speaking with about my health, even though I asked a few times,
During my last appointment, I was initially told that my mother could not come in with me, which did not make sense. I explicitly stated that she was here to help me with hearing, since they had yet to provide clear masks or a face shield for my health-care provider. After dealing with this, the physician’s assistant entered the room with a mask and a face shield on. I asked her if she could remove her mask while keeping the shield on, she took off her face shield but did not remove her mask. This is entirely redundant in nature.
I have been in enough situations to discern whether or not a comment or behavior is an underlying attack on my disability. I was provided a St. Luke’s case manager phone number by the clinical coordinator to speak with her regarding the lack of reasonable accommodations. I explained the situation to her, and was met with apathy.
I am fortunate to have the personal resources I needed in regards to a parent assisting as hearing support, however, this entire situation brings up some serious concerns about the accessibility in healthcare. What if someone who is Deaf/HoH is taken to an urgent care facility, or an ER at a hospital, in critical condition? Without clear masks, they cannot understand the doctors or nurses effectively, and a simple misunderstanding or communication can lead to danger and liability down the road. In the larger perspective of things, this applies for all types of disabilities, whether mental or physical. Each disability comes with its own set of barriers, and public institutions need to be educated on how to reasonably accommodate them.
It’s concerning to me that medical facilities are not equipped with clear masks, or face shields, and are not willing to adhere to the ADA in terms of providing reasonable accommodation. This is an obstruction to a”disabled” individual’s protected right to have equal access to medical healthcare, and to be able to communicate effectively with a doctor in regard to their well-being.
I realize that I am not the only one who is simultaneously limited and supported by the societal transitions due to COVID-19. The impact of COVID guidelines is not only felt by those with physical disabilities, but also those who are neuro-divergent. Individuals with sensory differences, such as Autism or Asperger’s, may feel constricted and obstructed wearing a mask for long periods of time - as well as those who are claustrophobic, or have PTSD. The list can go on, and I feel that it’s important to reiterate the fact that everybody holds a different set of abilities, and sometimes it’s entirely out of their control.
Instead of having the opportunity to adapt reasonably, individuals are oftentimes stigmatized by the general collective as not adhering to COVID guidelines. There is not enough awareness about disabilities that seem invisible, or individuals who may present well with having a disability. Everyone’s situation is different, and by law, we are to respect that and accommodate those reasonably required of them.
I can understand the government’s implementation of the COVID guidelines and mask mandates, however, I cannot sit right with the fact that the world is no longer accessible as it should be. It seems to me that the mask mandates could potentially be argued as discriminatory.
Therefore, I invite you to think about these questions:
Where do we start to initiate accommodations for the disabled during a global pandemic?
How do we start this conversation with our lawmakers, and political officials? To what degree are we experiencing grievances at the expense of our government?
How do we determine that accessibility and mandates are implemented effectively and simultaneously?
Is there a contradiction to the mandates as safety measures, when in reality, they create barriers to safety for part of the population?
How can we improve ethics in healthcare? What moral obligations take priority in dealing with this kind of situation?
[Autumn Puello can be reached at autumnop@live.unc.edu]
