Masked Lapwing

When Is a Condition a Disease and Not an Identity?

Identity is every bit as tricky as it is important. It gets even trickier when an identity is the target of bias. Another layer of complexity comes with the conviction that we can choose our own identities. Does a condition or physical characteristic define me? Is it an identity to claim or a challenge to overcome?

In these questions you can find fierce debates – about deafness, autism, and of course, obesity.

Identifying with Deaf Culture

In deaf culture, the difference between deaf and Deaf is huge. The small d refers to someone who does not identify with deaf culture. They may view hearing loss simply as a medical issue. On the other hand, the big D refers to someone who clearly and proudly identifies with deaf culture. Some research suggests that a clear identity – deaf, hearing, or bicultural – might help with psychological well-being.

Autism: A Difference, Diagnosis, Disorder, Disease, or Disability?

Autism is a spectrum for good reason. Someone may only have mild effects, while another person suffers profoundly. At one end of the spectrum, autism is merely a difference. Acceptance and perhaps accommodation may be all a person needs.

But at the other end of the spectrum, “autism is a living hell,” writes Benjamin Alexander to the Washington Post. “I don’t want to be accepted for the way I am. I want to be cured, just like a cancer patient wants to be free of disease.”

These sharply different perspectives foster intense conflicts. Parents advocate for their children with autism, but those children don’t necessarily view the condition in the same way. And thus the Autism Self Advocacy Network came to life in 2006. Along with others in the neurodiversity movement, the network has won greater respect for the differences between autistic and neurotypical individuals. Some companies now actively seek autistic employees.

That’s great progress. But it left families dealing severe autism feeling abandoned. So naturally, another advocacy group – the National Council on Severe Autism – steps into the fray. And just as naturally, it spawned hostility from the neurodiversity movement. Julia Bascom sums up the concerns of the Autistic Self Advocacy Network:

NCSA lifts up and advances depictions of autism, which paint autistic people as burdens, as toxic and as catastrophes. These attitudes harm us, increase stigma and misunderstanding, and make life harder for everyone, including our families.

What Is Obesity?

Against this backdrop, the rift between fat activists and obesity research is easy to understand. Fat activists reject a medical definition of obesity. They insist BMI alone – and thus physical size – defines obesity. Therefore, obesity cannot be a disease. It’s simply a misleading way to talk about normal size diversity.

For folks who are grappling with the health effects of obesity, that’s a straw man argument. Adipose tissue regulation run amok is what defines obesity. Effects on body size are a side issue.

Fat acceptance advocates want to claim the word “fat.” They want to take away its stigma. But folks concerned about obesity have a very different focus. They want better options for improving health. Overcoming stigma is important, but fat acceptance is not the focus. Health is.

Is obesity a disease? If you look at the science behind it and let go of BMI, it is. But if it’s all about size and weight, then it’s not. Right now, sad to say, the public view of obesity is all about size and weight. And that is why we’re stuck in stupid debates about obesity, getting nowhere fast.

For more on defining obesity based on health, not BMI, click here and here.

Masked Lapwing, photograph © Dennis Church / flickr

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May 8, 2019

One Response to “When Is a Condition a Disease and Not an Identity?”

  1. May 08, 2019 at 7:41 pm, michael said:

    Learning from other’s efforts in overcoming stigma is a worthwhile endeavor. Your autism example suggests segmenting can lead to factionalism.

    Successes in addressing the stigma of mental health are worth detailed exploration. There seem to be 4 keys; 1) scientists/clinicians prepared to stand up beside patients again and again in their defense, 2) everyday patients supported in telling their compelling stories, 3) respected statesmen-patients leading peak bodies, 4) well funded and organized peak bodies.

    What are we missing? Respected statesmen-patients leaders. Prominent and persuasive people who have suffered, succeeded in life and command the public’s attention.