Ableism in Diagnoses (1)

 

Ableism in Diagnoses

On Eugenic Legacies in Medicine and Naming as a Power of Definition

Antispe Ability, Pegi and Palang

Draft, November 1, 2025

Why must one live under the name of a syndrome named after a physician whose own history was marked by ableism, paternalism, or even eugenic thinking?

This is no theoretical conflict—it affects real people. Friends, for instance, who live with what is called Rett syndrome, or those with what is called Down syndrome.

Society usually perceives such terms as neutral designations—linking them to medical descriptions and to the supportive communities that have formed around them. But what does it mean for those directly affected when the very term under which they are categorized carries a history that devalues them?

When definitions carry burdens

Syndrome definitions can be medically useful – for understanding symptoms, therapies, or genetic aspects. Yet they also perpetuate old ways of thinking about “mind” [Geist] and “ability” that stem from an ableist worldview.

Those who are subsumed under a syndrome are doubly defined by others: medically and socially.

This becomes especially problematic when speech disabilities or non-normative forms of communication are automatically equated with “intellectual [geistiger] disability.” In our texts on “intellectual” [geistige] dis/ability and communication
(https://simorgh.de/disablismus/was-heisst-hier-geistig-behindert/)
we have already shown that such conflations are not only conceptually false but also deeply discriminatory. We also pointed out the need for differentiation, which leads us to statements such as: assessments of cognitive ability must critically examine their own cognitive ableism; linguistic comprehension must be rethought through a more complex framework of communication than conventional language allows; a speech impairment is not a cognitive deficiency; and there is a conflation risk at the intersection of cognition and language.

Understanding communication

People with what is called Rett syndrome experience these attributions in particularly sharp ways. Studies – some of which we have presented on https://simorgh.de/disablismus/?s=rett – show that medicine and therapy are only slowly beginning to recognize that concepts of language, communication, cognition, and intelligence must be understood in far more complex ways than before.

Communication rights must, in cases of speech impairment [better: speech divergence], be understood as fundamental rights. But that alone is not enough > If the social model of disability is to be taken seriously – as the disability rights movement demands – then we must return to the roots of these attributions in order to clearly identify their sources of error.

We must ask:

  • What was attributed to me – and by whom?
  • How did it come to be?
  • Is it even apply in my case?
  • How can I ward off this kind of damage?

Especially when it comes to cognitive ableism and the pathologization of speech perception and communicative ability (speech divergence), the principle must hold: Nothing about us without us.

Naming as an act of power

How can it be that in the 21st century we still name diseases and disabilities after their so-called “discoverers” – as if a territorial claim had been made?

Rett syndrome exemplifies how a eugenic tradition survives, hidden in a seemingly neutral name. Andreas Rett (born 1924 in Fürth, later Austrian citizen, died 1997), after whom the syndrome was named, was in his youth a member of the Nazi Party (NSDAP).[1] After the war, he rose to become one of Austria’s leading child neurologists. Yet his views remained shaped by a deep distinction he sought to draw between the “healthy” and the “mentally disabled.”

His practice, as documented for instance by Volker Schönwiese, combined paternalistic care with clearly exclusionary and eugenic ideas: forced sterilizations, the reduction of sexual violence to questions of “reproductive control,” and the use of unapproved medications on children.

Several sources – including Lisa Monsberger’s 2021 master’s thesis and numerous historical investigations by Austrian media – confirm these links. The persistence of eugenic thought after 1945 is evident precisely in how figures like Rett were remembered not as perpetrators, but as “champions for disabled children.”

Living under a name

What does it feel like to live with a name that defines one’s disability, when that very name carries within it a form of violence? And what does it mean to face daily a diagnosis whose terminology itself inflicts harm, yet without accepting it, one would not even be recognized by the medical system?

Society may say: “It’s just a name.”

But names are not simply neutral in this context. They structure perception, hierarchy, and value, and they carry with them both the history of the person who bore the name and the attributions and ways of thinking that this name brought with it and continues to bring with it. The view of disability is guided by the “territory” thus defined. And to even have an opinion about disability – well, that must first be sanctioned medically, mustn’t it? Especially when it comes to cognition and language, society insists on defining the norm. Sarcasm off.

Would you, exactly in your disability, want to be named after someone who degraded one’s humanity in such a way, and if such a naming would come along with the consequences that a narrow-minded, false way of thinking about one’s own humanity continues to be perpetuated, just because some part of the history of a syndrome naming might have been accurate. Isn’t a template being created here that requires caution, given how an image of the syndrome carrier is generated at the analysis levels, especially when it comes to the cognitive-communicatitional sphere? This is where the long-delayed problems arise, namely that systems relating to language and communication comprehension are not complete enough to allow us to pass judgment on a person’s mind.

The question concerning our human rights in the case of certain experiences with disability is primarily a question of the history of “normal” and “abnormal” and the automatic assessment of the latter as deficient. Injustice could and can be perpetrated on the grounds of an assigned deficiency in mental and cognitive abilities, at more or less all social levels. And interestingly, it is in fact generally the case that any form of devaluation always aims at a devaluation of the mental, intellectual “space.” And language and communication are, of course, very important players in evaluation questions.

It is certain in any case: medical terminology should not be allowed to influence the definition of mind [Geist] in any humiliating way!

A plea for new language

If we truly want an anti-ableist society, then we must take the social model of disability as the standard. Diagnoses must never be placed above a person’s mind. Any designation that links mental or intellectual traits with deficiency violates human rights and reproduces violence.

In our opinion, the discussion about neurodiversity must therefore also support a rethinking of the entire field of what pertains to mind, beyond the obsolete dichotomies of hierarchizing norms and, in particular, the extremely effective  norms of “disavowal” (and alike) that render communication as defunct (…).

The disability now known as Rett syndrome includes aspects that can be classified as neurodivergent. Neurodivergence is not an impairment, but one more facet of mental diversity. No human being is a sum of medical parameters. Identity must not be confined by ableist boundaries.

As long as names such as “Rett” or “Asperger” continue to be employed [as a compulsive habitual standard], statement of diagnosis recalls an inheritance of violence. Those affected should not be obliged to accept these names; instead, it is important to look for new and improved ways for descriptive terminologies that incorporate key elements and do not center around discovery.

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[1] Worth mentioning: “Nevertheless, more and more ex-Nazis trickled into the red doctors‘ association. Among them were later prominent professors, such as child neurologist Andreas Rett and psychoanalyst Hans Strotzka.” profil (Jan 15, 2005). “Zeitgeschichte: Die rote Nazi-Waschmaschine – Wie die SPÖ-Akademiker Nazis reinwuschen.” https://www.profil.at/home/zeitgeschichte-die-nazi-waschmaschine-102743 [Accessed: Nov 1, 2025]

General and further references. There are many other very important sources on this topic that we have unfortunately not listed here… we apologize for this.

See also our related info on simorgh.de/disablismus:

[all: 11/1/25]

Medical and sociohistorical sources on Andreas Rett:

Context literature on the history of ideology:

  • Schönwiese, V. (Hrsg.) (2012): wertes unwertes Leben. Beiträge zur Geschichte der österreichischen Behindertenhilfe. Wien: BIZEPS.
  • Waldschmidt, A. & Dederich, M. (Hrsg.) (2007): Selbstbestimmung, Behinderung und Genetik. Münster: Lit-Verlag.

We’ve been recommended to read in the context

  • Tremain, S. (2017): Foucault and Feminist Philosophy of Disability. Ann Arbor: University of Michigan Press.

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