Testing, Diagnosis, and Labels

There has been a lot of conversation in the news about testing and diagnosis related to the COVID-19 virus. This is understandable given its importance in public health and the failure of many countries to effectively and efficiently do the necessary testing. It is important to properly diagnosis the COVID-19 virus in order to conduct contact tracing and implement the appropriate self-isolation procedures. This is the primary narrative in the testing and diagnosis news stories. However, a more subtle secondary narrative also peaks out of many news stories – testing and diagnosis for the sake of labelling. 

There is much utility in identifying viral cases in order to break the chain of transmission and understand its attributes. It seems that South Korea was a particular success-story because of its wide-scale and rapid testing. However, receiving a COVID-19 diagnosis does not mean much in terms of actual medical treatment. A doctor will see a patient with a fever and pneumonia and treat the symptoms (and, actually, people are dying because of the effects of what COVID-19 causes – like pneumonia – not because of the virus alone). I’ve read a lot of news articles lately that seem to fixate on whether a person already in the hospital, especially those that died, has the virus; or mentions the need for more testing as a reflexive response. Ultimately, a test and diagnosis does not solve the problem for the individual. It matters for public health experts in terms of limiting spread, of course, but we shouldn’t need a diagnosis label in order to decide to care that someone else is suffering. As a society, we can certainly do better to pay attention to suffering and work towards a better way to do things outside of extraordinary and sensationalized stories. This is also especially true in another epidemic: gun violence. We tend to only pay attention to mass shootings, when actually the majority of gun deaths in the United States is suicide. (Obviously, both are tragedies that merit attention and action at a systemic level.)

For me, this is very reminiscent of another type of discourse that occurs in the disability community – the issue of disability diagnoses and labels. This is often a contentious conversation, and is tangled with identity and expectations to make the issue a thorny one. On the one hand, the argument goes, receiving a disability diagnosis pre-determines the negative expectations surrounding a person. This what the sociologist Ervin Goffman termed a ‘spoiled identity’ in his famous book Stigma (1963). For example, if we think of someone as being on the autism spectrum, we and/or society have already formed pre-conceived notions of their capabilities and attributes. On the other hand, for many people a disability diagnosis and label can form a positive association in terms of personal identity and identification with others. This is particularly found in the Deaf community. A disability diagnosis can be a source of relief for some, in that it can medically confirm that feeling of being different from others that may have always been there but not necessarily obvious. Disability labels can also be a source of political power, as was seen the disability rights movements in the 1970s and 1980s. Even though every person with a ‘disability’ is unique, a constituency of many people under one label can wield more political power. In academia, this has been discussed for within what Martha Minow termed a ‘dilemma of difference’ in her book Making All the Difference (1990). However, a more recent and accessible example is found in the new Netflix documentary Crip Camp. 

In my own work, I have explored how ‘disability’ itself is a socially and culturally constructed notion. Being ‘disabled’ is constructed through how society and culture define it against the notion of ‘normalcy’. (For many years I taught a class at the University of Birmingham titled ‘Cross-Cultural Issues in Disability’ and I always show my class this easily understood short video.) For example, my ethnographic research in Bhutan found that parents of children labelled as having a disability had a complex interaction with the idea of disability labels and diagnoses – they just ‘wanted to know’ that their child had a medical condition that could explain their difference, but also did not want the label to define the expectations for their child. They also wrestled with cultural and religious beliefs surrounding the causes and treatments for a disability. 

When consulting with schools and when thinking about designing more inclusive educational environments, I advocate to deemphasize the importance of disability labels. In fact, I would even go so far as to prefer the elimination of disability labels in schools altogether. In my opinion, these labels serve little educational purpose and do not have much, if any, educational utility. Knowing that a student ‘has cerebral palsy’ or ‘is on the autism spectrum’ or ‘has ADHD’ does not really help me as a teacher. What I need to know is their present level of performance, where they are in terms of skills development, and to target areas of strength and weakness. An individualized education plan (IEP) does often focus on these rather than the disability label itself, although American education law (and most other systems around the world) requires a disability diagnosis for children in order to be eligible to receive ‘special’ educational services. Interestingly, this has led to many educational actors trying to game the system – be it affluent parents seeking out disability diagnoses for their children in order to gain academic advantage, or school systems like many in Texas that ‘cap’ the number of children having a ‘disability’ because of funding issues (as highlighted in an excellent Houston Chronicle series), essentially creating a quota-system of disability categories. This is also a failure in how we train and prepare teachers, in that most pre-service programs have at least one ‘disability of the week’ type class that identifies certain kinds of interventions for certain kinds of disability labels. This trains teaches not to think creatively about meeting student needs.

A school system design that does not need a disability diagnosis in order to serve all children is gaining traction in the US and elsewhere and is called Multi-Tiered Systems of Support (MTSS) – or sometimes referred to as ‘whole school inclusion’. Using a tiered approach and emphasizing universal design for learning (UDL) principles, MTSS continually monitors student performance and tries to catch them before they fail. (Special education is often criticized for its ‘wait to fail’ approach.) Of course, MTSS is not always perfect either, but it does focus on the child and the system rather than the expectations surrounding a label. (The SWIFT center at the University of Kansas is certainly leading the way on this inclusive school re-design.)

To deemphasize or eliminate disability labels in schools does not mean that disability labels and diagnoses do not have any utility or value. Certainly, disability diagnoses often have value in terms of identity, kinship, and political power. Disability diagnoses can also have utility medically, in that an effective diagnosis can lead to more appropriate and effective treatment and medical management. In schools, however, I believe that disability labels do more harm than good in that it shapes our expectations and limits our ability to treat the student as an individual. The student becomes the label. 

With COVID-19 testing and diagnosis, knowing that someone has the virus does have some utility both for public health and for immediate healthcare. However, I worry that we are ultimately learning the wrong lessons. What this pandemic is exposing is the systemic issues that we have in dealing with healthcare crises, and in providing basic healthcare to the population in general. It is also exposing all kinds of social inequalities that will only get worse as economies struggle. When all of this is over, I hope that these things are discussed and acted upon. What are we going to do for someone with bilateral pneumonia that is not diagnosed with COVID-19? What are we going to do if they do not have insurance and cannot pay for treatment? What are we going to do when people are sick but cannot take a day off because they could be fired?

In education we need to move past the energy we put into labelling someone and do better at caring about all student outcomes as a systemic value. We need to do better at focusing on the individual needs of all students, ensuring that all students are challenged to grow and develop their skills and talents within a system of care and support.