A registry is a listing organizing information. People create registries of all sorts of things, from animal pedigrees to copyrights and domain names. We register for happy things, like our gift preferences with shops when getting married, or anticipating the birth or adoption of a child.
Medically, people register to receive organ donations. Companies may register recipients of prostheses in case there needs to be follow-up care. To prevent or manage epidemics, registries of affected individuals may be kept to monitor disease containment, treatments, and mortality.
People also register pets to help ensure their return. We also register things, generally for licensing and taxation purposes, as some of these can be dangerous items:
Motorcycles / Motorbikes
Televisions (dangerous item: yes or no?)
Many landmark events in our lives require moving datasets from one office to another. College students make a number of trips to their uni’s registrar to manage the appropriate transcript transfers. College students with disabilities may choose to register with the uni’s access office if they are to receive accommodations. (Naturally, doing this requires even more paperwork.) Part of getting one’s diploma means that you are now a Papierkrieg veteran (German: “paper war” i.e. bureaucracy).
Once graduated, people in some licensed occupations may be registered to help ensure that agencies can successfully maintain optimum staffing, and people will be able to secure jobs as needed.
To receive various legally sanctioned benefits, people also register major personal events with various local or national government agencies, to acquire the necessary Very Important Pieces of Paper — after all, nothing officially exists without documentation! All but the last two of these are events that people are generally glad to mark in their lives, aside from the bureaucratic hassles associated with such:
Birth (someone else’s)
Marriage / Civil Union
Divorce / Annullment
Death (someone else’s)
Speaking of death, on the darker end of things, groups of humans have been registered for others to monitor who these people were, and where they were. The rationales for these kinds of registration were that the categories of people were a concern to the authorities because of who or what they were. They didn’t have to be proven dangerous, they just might be because they were different. In such cases, registration was not optional; if one didn’t register themselves, they would be registered by any other authoritative body who knew their identity. Even suspected persons had to be investigated to assess if they were a burden to the public safety.
So what makes a category of humans? That’s really not a simple quantitative question. It’s interesting to note that for over half a century, evolutionary biologists have not classified human “races” as being genetically-discernable categories. Certainly there’s not sufficient difference if humans are described by qualities such as national background or religion – these are just social constructs. Qualities such as skin tone or sexual orientation have been used to categorise people, but these labels are not as black or white (sorry) as some would have them.
Or, blue. People’s skin color ranges from various qualities of pink or brown, but you know, someone who’s blue is very different.
Art imitated life in the X-Men comics, where mutants like Nightcrawler were also specially censused under the Mutant Registration Act. Here the dialog about the balance of personal liberties against concerns for “public safety” was played out. Naturally, this plotline by Chris Claremont echoed several historical events of World War II, namely the registration (and subsequent incarceration in concentration camps) of several groups of people, including Japanese-Americans and Japanese-Canadians in their respective countries, plus Jews, Romani, homosexuals and others in Nazi-controlled Europe.
But you know, that’s fiction. And, ancient history. (That’s “ancient” per school-child standards.) This however is current events per school child standards; in the US state of Delaware, where “It’s good being first” according to state motto, all autistics (under the age of 18) are required to be registered.
1.1 Autism is a severe neurodevelopmental disorder whose prevalence appears to be increasing in Delaware and across the United States. An Autism Surveillance and Registration, or an Autism Registry, will enable the Department of Health & Social Services (DHSS), Division of Public Health (DPH) to collect basic descriptive information on the individuals with autism, to track changes in prevalence over time, to inform the planning of service delivery to children with autism and their families, and to facilitate autism research.
To facilitate research we need to know the identity of every single autistic child in the state of Delaware?
1.2 The purpose of the Autism Registry is to provide an accurate and continuing source of data concerning autism to provide information to Public Health officials to help to ultimately decrease the autism morbidity burden associated with the disorder. The Autism Registry will gather data to assist with: prevalence estimation, cluster investigation, risk factor identification, and outcome assessment.
Holy cows, this is not a contagious condition. We might say, “Oh well, these children often need services,” but you know what? I don’t find registries for people with Down’s Syndrome, even though physiological anomalies sometimes accompany DS, and people with DS often have specific educational needs. Nor do I find registries for Deaf people, or people with Tourette’s. Then again, one doesn’t read catastrophic articles about “epidemics” of such.
3.1 The registry shall collect information on any child under the age eighteen (18) who is a resident of the state of Delaware, or whose parent is a resident of Delaware, and who is diagnosed at any time prior to age eighteen (18) as having confirmed autism. For the purposes related to the registry the Department shall have access to any medical record of the child with confirmed autism.
Any medical record?
3.5 The following persons and organizations are required to report occurrences of autism within 30 days of diagnosis to the Division of Public Health.
3.5.1 Any physician, surgeon, dentist, podiatrist, or other health care practitioner who diagnoses a child with autism under age 18 who is not known to be previously reported. Other health care practitioners will include but not be limited to: psychiatrists, clinical and school psychologists, speech and language pathologists, licensed clinical social workers, and nurses including school nurses;
3.5.2 The designated representative of any clinical laboratory conducting assessment, evaluation or research that performs any test which identifies a child or children under age 18 with confirmed autism not known to be previously reported; and
3.5.3 The designated representative of any hospital that diagnoses a child or children under age 18 with confirmed autism.
(Well, that’s pretty much reportage by anyone. Because of course, dentists are highly qualified to make such a diagnosis – not.)
Okay, maybe that’s just tickling my paranoia bone too much. Funny thing is, one doesn’t hear much about this. The event came and went quietly onto the books. Most people were silent; hey, who cares about mass registration? Well, ‘cept maybe Martin Niemöeller.