If you have white privilege and you belong to the middle to upper class in the United States, you have had access to medical care and other patient families living with your condition. You have probably had resources like departments of vocational rehabilitation and have had your needs accommodated to attend a college of higher education or job placement.
I fall into these spaces as I have had assistance as a white disabled female in university (side note: I did not have access in Bible college because it was an unaccredited religious school with no students with disabilities services). I was taught by someone associated with a department of vocational rehabilitation to create and write specific cover letters to go with resumes. I apply for government grants and loans for schooling and have received them due to my income falling below poverty level.
The advice given to me concerning absences and late work and mobility was keeping in contact with each professor and teacher. In fact, much of my self-advocacy with my doctors, pharmacy techs, and insurance billing was practiced from middle school onward because of the amount of communication I needed to have with my schools and work places. I am skilled in spoken and written forms of communication and it would be appropriate for someone like me to work in this field.
When I started getting the emails due to the coronavirus in my current university inbox, my first reaction was to chuckle as the communications department and chancellor was asking for encouragement for those who needed to be absent from class for longer periods of time. Instructors were actually requested not to ask for medical proof of absences as well as no longer using the dean’s office to submit documentation for medical absence. Students were asked to directly communicate with staff about their condition in order to ensure timely work accomplishment.
Campus culture is not so far removed from societal expectations in the work force as many people think. And this is made clear when one has lived in a disabled body since birth and had to acclimate to school policy instead of the school policy being lenient in fair ways to their existence and participation in the school.
Work and job placement for someone who has had to ask for access and accommodations in education is only exasperated because of the reality of employers paying the disabled person for a job. If the disabled person has the job capabilities just like an able person, corona virus has now ensured that it is doable to work from home while getting paid, online is an alternative for in-class absences, and online is a place where work-related conferences can take place. It will be telling who society has placed more worth and value upon if we go back to limiting access and accommodations after the general population pandemic is over.
So my secondary reaction is anger. I feel angry as my energy and mental and emotional space continues to be taxed because living inside a disabled body is inconvenient in a world designed for the well side of humanity and nothing in between, let alone the ill side.
I thirdly feel a sense of justice in my anger for all people living with disability and hope our reckoning comes because of the environmental changes occurring as coronavirus is affecting humans globally.
And in all reality, blogger and media specialist Jessica Jondle and I posted updated information for adults living with our disease, cystinosis, and the current covid 19 pandemic:
Here is a statement offered by Dr. Richard Simon, pulmonologist and cystinosis researcher at the University of Michigan, to our adult population:
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“I have been asked if the respiratory problems that can occur in some adults with cystinosis should place them in the ‘high risk’ category for severe consequences if they become infected with the SARS-CoV-2 virus that causes the disease, COVID-19. Before directly answering this, I believe it worth noting that the majority of adults with cystinosis are kidney transplant recipients and are taking immunosuppressive medications to prevent rejection. This places them into the ‘high risk’ group as defined by the Centers for Disease Control and Prevention (CDC). Therefore, the CDC recommendations for the high risk group should apply to most adults with cystinosis, regardless of their respiratory status (https://www.cdc.gov/coronavirus/2019-ncov/index.html, see ‘Older Adults and Medical Condition’ section. More information about COVID-19 for transplant recipients can be found on the website of the American Society of Transplantation (https://www.myast.org/covid-19-information).
Some adults with cystinosis develop weakness of the muscles that are used for breathing. The lungs themselves in people with cystinosis are usually normal, unless they have another lung condition unrelated to cystinosis. If muscle strength and endurance are normal in someone with cystinosis, then the risk of severe disease from COVID is no further increased above what it would otherwise be. But those who do have significant respiratory muscle weakness will have more problems if they do develop pneumonia as part of COVID-19. A person with pneumonia needs to ventilate more to compensate for the lungs being inefficient at getting oxygen into the body and carbon dioxide out. Furthermore, it takes more work to inflate lungs that have pneumonia because of secretions plugging up some of the airways and the lungs themselves are less complaint. Therefore, people with cystinosis and significant respiratory muscle weakness who develop pneumonia during COVID-19 have a greater risk of needing intensive care unit treatment and breathing assistance with mechanical ventilation than if their respiratory muscles were strong. For this reason, I would consider people with cystinosis and respiratory muscle weakness alone to be in the “high risk” COVID-19 group. All of the CDC recommendations for those at high risk would apply to them.
Determining whether someone has respiratory muscle weakness is best done by formal pulmonary function testing that measures the maximal amount of air someone can blow out after taking in the deepest possible breath. A level below approximately 70-80% of normal would suggest respiratory muscle weakness. Pulmonary function laboratories can measure respiratory muscle strength by additional methods. Another suggestion that respiratory muscles are weak is if someone becomes uncomfortably short of breath after climbing less than 2 flights of stairs, assuming there is no other reason for it. For more information, it is best to consult your healthcare provider who knows most about your cystinosis.”
Richard H. Simon, MD
Professor and Associate Chair for Faculty Affairs
Department of Internal Medicine
Pulmonary and Critical Care Medicine Division
University of Michigan Medical School
CYSTINOSIS SOCIETY 