{"id":4937,"date":"2025-07-14T18:44:32","date_gmt":"2025-07-14T18:44:32","guid":{"rendered":"https:\/\/blog.geneticsupportfoundation.org\/?p=4937"},"modified":"2025-07-14T18:44:51","modified_gmt":"2025-07-14T18:44:51","slug":"who-defines-health-and-what-purpose-does-its-definition-serve","status":"publish","type":"post","link":"https:\/\/blog.geneticsupportfoundation.org\/index.php\/2025\/07\/14\/who-defines-health-and-what-purpose-does-its-definition-serve\/","title":{"rendered":"Who Defines \u201cHealth\u201d and What Purpose Does Its Definition Serve?"},"content":{"rendered":"\n

By Devin Shuman, CGC (she\/her) and Andrea Schelhaas, CGC (she\/her)<\/h4>\n\n\n\n

*Of note, we purposefully use capital D in Disabled <\/a>and capital A in Autistic <\/a>in this text as individuals who embrace disability as a core part of our identities and who are part of the larger Disability community advocating for disability rights and equality.\u00a0<\/p>\n\n\n\n

<\/div>\n\n\n\n

Today, we have a short question with a long, complicated answer for you to ponder. What is health? And, just as importantly, who gets to define it?\u00a0<\/h2>\n\n\n\n

The World Health Organization defines health<\/a> as \u201ca state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.\u201d However, this definition raises further questions – what is \u201ca state of complete well-being?\u201d What does it look like? Who defines what it means to be \u201cwell\u201d? How does “well-being” differ from the very term it is meant to describe? Instead, this definition of health becomes circular and ultimately useless.<\/p>\n\n\n\n

Working in prenatal and pediatric genetics, we often hear parents state that they \u201cjust want a healthy child.\u201d The sentiment comes from a place of love and good intent. When asked to elaborate on what they mean by \u201chealthy,\u201d parents often reference an absence of pain or hardship, the ability to achieve, and a life without barriers to their child\u2019s hopes and dreams. In essence, parents are searching for some level of certainty or belief that their child will live a \u201cfull, successful life.\u201d However, these ideals are not easily defined or achieved. <\/p>\n\n\n\n

No life is free from pain, hardship, or barriers to one\u2019s hopes, dreams, and \u201cachievements,\u201d regardless of how these concepts are defined. Even when we solely focus on medical diagnoses, disability is common. In the US, approximately 10% of children experience a speech delay<\/a>, 10% are diagnosed with ADHD<\/a>, 1-10% live with epilepsy or seizures<\/a>, 3% are Autistic<\/a>, and 3% are born with a birth defect<\/a> (such as the 1% of babies born with a heart defect). In adulthood, 15% of individuals develop type 2 diabetes<\/a>, 50% experience high blood pressure<\/a>, 5% have coronary artery disease<\/a>, 20% live with anxiety<\/a>, and 40% face a cancer diagnosis during their lifetime<\/a>. For example, disability is often framed as the opposite of health and well-being, yet it is the one \u201cminority group\u201d that everyone, if they live long enough, will join.\u00a0<\/p>\n\n\n\n

Even \u201crare\u201d diseases, when considered collectively, are not that rare. Who is this \u201chealthy general population\u201d we so often use as a benchmark? Why is average defined as \u201chealthy\u201d instead of just \u201ca common state of being?\u201d And why are those who fall outside the center of a bell curve considered \u201cimpaired,\u201d \u201cabnormal,\u201d or \u201cdefective?\u201d For decades, the Disability community has long advocated for a shift in this narrative, shouting that we are not \u201cbroken\u201d – we are simply representing the full spectrum of human existence.<\/p>\n\n\n\n

<\/div>\n\n\n\n

How did we get here and where do we go?<\/h2>\n\n\n\n

The concept of being \u201chealthy\u201d is often positioned as the opposite of having a health condition or medical diagnosis, but again – who defines \u201cnormal health?\u201d Historically<\/a>, \u201cnorms\u201d of health or wellness were established through limited studies focused primarily on white, upper-middle class, cis-gender, and heterosexual individuals assigned male at birth<\/a>. Entire populations, particularly individuals assigned female at birth, historically marginalized ethnicities, and gender-diverse communities, were systematically excluded. In many cases, so-called health \u201cnorms\u201d were either shaped by pharmaceutical companies<\/a> to pathologize human differences for profit or co-opted from benign origins and repurposed as tools of exclusion. For example, IQ was developed as a measure to identify students who had different learning needs but has been weaponized to justify eugenics, forced sterilizations, and restrictive immigration policies.<\/a> We still use measures like IQ to define and compare what is \u201cnormal\u201d and what is \u201cdeficient\u201d or \u201cother,\u201d reinforcing outdated and exclusionary standards. <\/p>\n\n\n\n

Centering \u201chealth\u201d as the ideal for all causes great harm. It stigmatizes Disabled people for existing in their minds and bodies as they are. It isolates Disabled students for being \u201cproblematic\u201d just because they exist in an educational system that is designed to support able-bodied, neurotypical individuals, not one that is prepared to support a full range of learners. Instead, there is a notion that individuals who do not hear, see, speak, think, act, or move like the statistical majority are a problem that needs to be fixed. We idealize \u201chealth,\u201d not because it is universally attainable, but because it helps to distance ourselves from the reality <\/a>that we have created a society that does not support everyone. Labeling some as \u201cless than\u201d makes it easier to ignore systems that are not inclusive. <\/p>\n\n\n\n

There is no default human body, mind, experience, or existence. The next time someone references \u201cbeing healthy,\u201d ask yourself – What do they really mean by that?<\/em> Where did those \u201caccepted norms\u201d originate from and what purpose do those really serve in this context?<\/em> Who benefits from them and who is harmed?<\/em> The definition of health as \u201ca state of complete physical, mental and social well-being\u201d is dangerously generalized, stereotyped, and an unachievable concept that ignores the complexities, individual nuances, and biases that shape our understanding of health. This obsession with complete well-being leads us to ignore the structural causes of harm including inaccessible environments, discriminatory policies, and ableist assumptions. In chasing this ideal, we exclude most Disabled people, and, truly, most people entirely.<\/p>\n\n\n\n

So once more, we ask: Who defines \u201chealth?\u201d And, most importantly, how does this concept shape our society when chasing an ideal of \u201ccomplete well-being\u201d excludes the vast majority of people?<\/p>\n\n\n\n

<\/p>\n","protected":false},"excerpt":{"rendered":"

By Devin Shuman, CGC (she\/her) and Andrea Schelhaas, CGC (she\/her) *Of note, we purposefully use capital D in Disabled and capital A in Autistic in this text as individuals who embrace disability as a core part of our identities and who are part of the larger Disability community advocating for disability rights and equality.  Today, …<\/p>\n

Who Defines \u201cHealth\u201d and What Purpose Does Its Definition Serve?<\/span> Read More \u00bb<\/a><\/p>\n","protected":false},"author":1,"featured_media":4941,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"om_disable_all_campaigns":false,"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"site-sidebar-layout":"default","site-content-layout":"default","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","footnotes":""},"categories":[63,95,49],"tags":[87,73,96],"class_list":["post-4937","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-advocacy","category-disability","category-health","tag-advocacy","tag-disability","tag-health"],"yoast_head":"\nWho Defines \u201cHealth\u201d and What Purpose Does Its Definition Serve? - Gene Cuisine: satisfying your appetite for genetic news and information<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/blog.geneticsupportfoundation.org\/index.php\/2025\/07\/14\/who-defines-health-and-what-purpose-does-its-definition-serve\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Who Defines \u201cHealth\u201d and What Purpose Does Its Definition Serve? - Gene Cuisine: satisfying your appetite for genetic news and information\" \/>\n<meta property=\"og:description\" content=\"By Devin Shuman, CGC (she\/her) and Andrea Schelhaas, CGC (she\/her) *Of note, we purposefully use capital D in Disabled and capital A in Autistic in this text as individuals who embrace disability as a core part of our identities and who are part of the larger Disability community advocating for disability rights and equality.  Today, … Who Defines \u201cHealth\u201d and What Purpose Does Its Definition Serve? 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