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Key points
- Since the 1970s, "identity" has become more fluid.
- One’s identity comprises the groups (e.g., ethnic or religious) with which one strongly identifies.
- Identifying as an ADHD person, not someone with ADHD, can be empowering.
- However, as the history of the deaf shows, pushback from parents and the medical profession must be expected.
I hadn't thought much about attention-deficit/hyperactivity disorder (ADHD) until an extract from a recent book caught my attention: 4 to 5 percent of adults in the U.S. are estimated to have it.
Some say it's under-diagnosed. Others point to rising rates and say it's now over-diagnosed. A diagnosis helps some people make sense of their own behavior. Journalist Matilda Boseley's book is aimed at people who've received an ADHD diagnosis as adults. She highlights the benefits of not simply getting treatment but of positively embracing an ADHD identity.
The research literature is full of studies of people claiming ADHD as an identity. Why don't they simply accept a brain dysfunction diagnosis and look for treatment? Is it related to growing rates of ADHD diagnosis (partly through self-diagnosis)? To identify as an ADHD person –rather than as someone having ADHD – is to acknowledge that it's a significant element in what and who you are.
From "identity" to "identification"
Decades ago, you couldn't have chosen an identity like that. The idea of your identity being something you could choose for yourself didn't exist. It emerged from changes in society beginning roughly in the 1970s. As society changed, social bonds weakened. The notion of 'identity' became more fluid. Many sociologists no longer speak of 'identity' as a fixed characteristic of a person. They prefer to speak of 'identification' as something someone does. From this perspective, my identities consist of the groups I choose to identify: national, ethnic, religious, etc. Not everyone is equally free to make these choices. That depends on all kinds of factors, including where you happen to live. Take the notion of a 'non-binary identity.' It emerged as an option in the late 1990s but is certainly not available everywhere.
In the extract from the book I read, Matilda Boseley suggests embracing an ADHD identity can lead to greater self-esteem. But she goes further. She looks ahead to an ADHD community. She anticipates educational and other social institutions adjusting to the specific needs of ADHD people.
From "deaf" to "Deaf"
Deaf people set out down a similar road decades ago. In the 1960s, most adult deaf Americans had been brought up orally. As children, their hearing loss had been measured, and they'd been fitted with hearing aids. They'd been sent to special schools for the deaf, where they were required to speak. Signing at school was forbidden. As adults, many were ashamed to sign in public. Only on private social occasions and at the local deaf club could they sign freely. In the early 1970s, something began to change. Linguists showed that the signs with which many deaf people preferred to communicate were a true language. Research by sociologists showed that deaf people actually formed communities. Deaf clubs flourished. Inspired by this research, deaf people in the U.S. (and in France and a few other countries) began to reject their characterization as 'hearing impaired.' Emphasizing their shared language, social institutions, and culture, they demanded that society treat them as a socio-cultural minority. In 1989, Gallaudet University in Washington D.C. hosted the first Deaf Way festival: an international celebration of Deaf culture.
Being unable to hear doesn't make you a member of the Deaf community. Much more important is mastery of the national sign language, which, in the U.S., means American Sign Language (ASL). Some activists began to use the term Deaf (with a capital D) for people who identify with the Deaf community and who prefer to communicate in sign language. Some schools began to teach sign language (or in the mixture known as Total Communication).
What happened?
Roughly forty years have passed. Have the changes for which Deaf advocates struggled actually come about? Yes and no. There've certainly been many positive changes. In the U.S., you can now major in Deaf Studies or Sign language/linguistics at a number of leading colleges. Many high schools offer ASL as a foreign language option. There's a National Theater of the Deaf, and regular performances in sign language take place in many North American cities (as they do in London, Mexico City, Paris, and elsewhere). Sign Language interpreters can be seen on national television channels in many countries, even some of the poorest. Nevertheless, something paradoxical has been going on.
Spread of cochlear implantation
Coincidentally or not, late 20th-century moves for Deaf emancipation coincided with the development of the cochlear implant. This remarkable piece of electronics first offered rehabilitation to someone becoming totally deaf in adult life. Few late-deafened adults become proficient in sign language. In 1990, the FDA first approved the implantation of deaf children. The procedure spread nationally and internationally. Many centers offering implantation advised avoiding exposure to sign language, claiming it would slow down spoken language development. They rejected the idea that adult deaf people could help parents understand their deaf child's needs. Some parents wanted to understand what 'growing up deaf' entailed. Many more preferred not to think about that. They couldn't imagine learning sign language or the implications of becoming a bilingual family. The implant seemed the miracle cure they'd dreamed of. Pressure from parents drove schools to abandon teaching Deaf culture or offering classes in sign language.
What implications for neurodivergent people?
It seems to me this paradox lies at the heart of recent deaf history. On the one hand, enormous progress. That's partly thanks to new visual and computing technologies. It's also thanks to a growing fascination with deaf culture and performance. On the other hand, there's been pushback from parents who find it difficult to embrace differences. They find support in a medical profession reluctant to accept limits to what it can or should offer.
I can't help wondering if people claiming ADHD, or more generally, a neurodivergent identity, are running into a similar paradox.
References
Matilda Boseley (2023) The Year I Met My Brain Penguin Books. ISBN: 9780143779773
Stuart Blume (2010) The Artificial Ear. Cochlear Implants and the Culture of Deafness. Rutgers University Press. ISBN 978-0-8135-4660-5
Laura Mauldin (2016). Made to Hear. Cochlear Implants and Raising Deaf Children. University of Minnesota Press. ISBN 978-0-8166-9725-0
