Counterinsurgent Mother Figureheads
Thank You For Your Feedback Loop is a monthly newsletter that will share previously unpublished reporting and analysis on the elite capture of disability movements.
by: Liz Jackson & Rua M. Williams
audio: Jules Good
Judith Heumann may forever be remembered as the Mother of the Disability Rights Movement, but how she gained the title was promptly forgotten. Upon Heumann’s passing in 2023, the headline grabbing claim that she was widely regarded as, known as, often (or sometimes) referred to as or called the Mother of the Disability Rights Movement seemed for many to come out of nowhere. The quotation marks that frequently appeared around or within the designation – as in ”the mother” of the Disability Rights Movement or the “Mother of the Disability Rights Movement” alluded to an original source, though that person was never attributed. Who was it quoting?
Particularly striking was the axiom’s omission from Crip Camp, a 2020 feature-length documentary film – Executive Produced by former President and First Lady, Barack and Michelle Obama – that turned Heumann into a disability icon. In the film, Heumann’s activism was integral to the burgeoning Disability Rights Movement, but at no point did the film ever describe her as the mother of it. And that’s because there was no Mother of the Disability Rights Movement until the Oscars, which Crip Camp had been nominated for, had passed.
The following month, the Washington Post Magazine published a retrospective on “Judy Heumann’s pandemic year.” In an interview for the profile, Susan Mizner, then director of the American Civil Liberties Union’s Disability Rights Program told reporter David A. Taylor that she calls Heumann “the mother of the disability rights movement.” Mizner’s sentiment was then embellished into a deceptive headline stating “she’s considered the mother of disability rights,” as though it was universally accepted. According to Renée DiResta, author of Invisible Rulers: The People Who Turn Lies Into Reality, “propaganda often argues that a particular consensus already exists.” It was through deliberate repetition of this false consensus by a “collection of powerful individuals and outlets who participate in systematic attempts to shape public perception” that Heumann ascended from merely being considered to being widely considered the mother of the Disability Rights Movement.
For many who interacted with Heumann or had their activism stifled by her, the maternal moniker was absurd: She could be ruthless, notoriously sought celebrity, hungered for power, and was singularly protective of her scripted legacy. She allowed herself to become a shield for countless institutions she served on the boards of. She may indeed have been a central figure in the famous 504 sit ins, with video evidence of her incisive commentary on the abysmal failure of the federal government to protect disabled citizens, but what she had become was more boomer than mother – taking up space and hoarding resources by gatekeeping young activists who wouldn’t serve her ambitions.
The legend of Judith Heumann is again growing — this time into something resembling the story of Moses. She is slated to become the protagonist of a biopic on the 504 Sit-in for Apple TV, which “tells the story of Disability activist Judy Heumann leading over a hundred Disabled people to take over the San Francisco Federal Building in 1977, kicking off a 28 day sit-in.”
In a 2021 Disability Studies Quarterly review, disabled trans activist and educator Marrok Sedgwick described how the Crip Camp portrayal of Heumann “erases the collective effort in service of a narrative of inspiration porn (Young, 2014) fueled individual exceptionalism, and at the cost of history. For example, Kitty Cone, who Heumann elsewhere describes as one of the primary organizers of the 504 Sit-In (Heumann, 2012), is hardly mentioned in Crip Camp.”
When we consider who has been allowed to retain a record in disability movements, it’s important to remember one significant difference between Kitty Cone and Judith Heumann. Cone had Muscular Dystrophy, which is both congenital and degenerative. Heumann was an otherwise normal child who was robbed of her nondisabled status as a result of contracting the disabling epidemic, Polio. It is possible that being a survivor may have lent Heumann a credibility that was not conferred to her congenitally disabled peers. After all, most progress in disability has traditionally been made when the “injured” – those who acquire disability through war or disaster – make effective liberal appeals. Or maybe it was the fact that Kitty Cone was cut off from public recognition for her activism after the FBI identified her as a Marxist.
Heumann’s exaggerated role made her a beneficiary of a narrative that otherwise “objectifies people with cognitive disabilities, minimizes the contributions of Black disabled people and LGBT+ disabled people, and erases the voices of non-Black disabled people of color,” according to Sedgwick. Yet, these were the people who were seeking to break from the disability establishment through the emerging Disability Justice Movement, which was gaining traction despite Heumann’s ascension to the realm of motherdom. The timing suggests, at the very least, that the presence of a maternal figure might quell the rising dissatisfaction with the incremental and often unfairly distributed gains of the Disability Rights Movement through its increasing alignment with the very establishment it once railed against.
When it became apparent that a few who had effectively capitalized on its objectives were now pulling the ladder up behind them, it cast an eager figurehead who was motivated by ambitions of glory. Placing her above reproach not only protected her, it also protected the myth of the Disability Rights Movement as a radical crusade – just as new generations of actual disabled radicals were realizing who and what exactly they were up against. The Disability Rights Movement was created to be absorbed – this is what the fight for inclusion does. And it is this shared propensity that made Judith Heumann – not the mother of – but rather, the personification of the Disability Rights Movement.
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In 1979, a 26 year old industrial designer named Patricia Moore took it upon herself to don an elaborate disguise as an elderly person – using canes, walkers, and wheelchairs as props. She has described this “experiment" as her “cornerstone,” saying “there were nine characters, from a homeless lady to a wealthy woman with a chauffeur.” She would do things, such as wrap tape around her fingers to simulate arthritis or wear thick glasses to distort her vision during the three years she spent traveling the United States and Canada as “old Pat.” These antics became the pretense for her book, Disguised, which came out a few years later. Moore leveraged the four (or three) year stunt into a career as a sought after consultant and speaker, even though it has since been shown that “simulating disabilities promotes distress and fails to improve attitudes toward disabled people.”
These days, Moore relies on her clout as the “Mother of Empathy” to corner the market as a de facto expert in the amorphous fields of inclusive design, universal design, adaptive design, etc. None of the corporations or institutions who shower her with awards and honors and high paying contracts seem to consider that the very thing that makes Moore the mother of empathy is her outsider status. If she was one of us, her expertise would be diminished as lived experience, she would be thanked for her feedback and told to be grateful for the opportunity.
When asked “Who coined [the Mother of Empathy] and what does it mean to you?” Moore responded “I’m not certain where or when I first heard that compliment, but I believe it was either Roman Krznaric, author of Empathy: Why It Matters and How to Get It, or Dev Patnaik who penned Wired to Care: How Companies Prosper When They Create Widespread Empathy.” Yet neither book describes Moore as the mother of empathy, and the only known source that ties Dev Patnaik or Roman Krznaric to the "Mother of Empathy” is the Medium post, titled Tips from the “Mother of Empathy” which published the Q&A above.
Patricia Moore has borne many monikers over the decades, including the Mother of Universal Design. This one can be traced as far back as an obscure 2013 blog post that states "whilst Pattie is considered a founding mother of Universal Design this approach to design is also known as Inclusive Design." This is probably why Moore also goes by the Mother of Inclusive Design.
In 2022, Moore received an honorary doctorate from Sheffield Hallam University. The announcement said she was “described as ‘the mother of inclusive design,” but the only other search result that could be found at the time for "mother of inclusive design" was a Tweet from Sheffield Hallam University linking to the announcement. Who else had described Moore as the mother of inclusive design, per the announcement? In a response to this question, Sheffield Hallam University wrote:
Pattie has been affectionately quoted as being the ‘mother of universal design’ by many organisations in the design sector. Universal design is also known as inclusive design. We have used the term ‘inclusive design’ as we consider it to be a current term that is more understandable to the reader.
It’s hard to find any organization that describes Moore as ‘the mother of universal design’ per SHU’s claim. Many organizations note Moore is "considered the Mother of Universal Design" or "often referred to as the Mother of Universal Design,” but that’s not the same thing as being “affectionately quoted” - whatever that means. When Liz Jackson (co-author of this piece) asked Moore about it via LinkedIn direct message, she actually responded:
"the quotes are being used not for a single source, but as an indicator that calling me The Mother of Inclusive Design is a widely noted title of affection. In other words, quoting appears to have emerged as a way to acknowledge the ambiguous nature of the citation.”
Round and round and round we go. Where it stops, nobody knows…
A few months later, in August 2022, Moore seemed to distance herself from her “mother of” monikers of yore by declaring herself The Dowager of Design. Literally. She said “I declare myself The Dowager of Design” in an interview, explaining “that whenever the dowager was at the dining table or entered the room, everyone stood to attention, noted what she said, didn't necessarily agree with it, but she was, in fact, the core and the center of the culture.”
Even though Moore cloaked this declaration in her bemusement of Maggie Smith’s Downton Abbey character, her candor reveals a tyrannical quest for unchecked control. The soft power of her maternal monikers have granted her free rein to impose her priorities onto subsequent generations, because those who fail to conform to her way of doing things become disappointments as a result of disrespecting the mother. As such, it seems that the legacy of a ‘mother of’ may actually be a little less vanguard and a little more stalwart for the status quo.
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During the Roman Republic, the title Pater Patriae, or father of the fatherland was typically conferred onto emperors after many years of successful rule. The distinction began to spread throughout early modern Europe, bringing honor to individuals who were “considered the driving force behind the establishment of his country, state, or nation.” This is eventually how George Washington became the Father of His Country. ‘The father of’ honor expanded further to include individuals who were credited with the origins of a particular field or invention. It’s a deeply patriarchal designation, indicating one’s authority and rule, where being the first is not so much a marker of time as it is a marker of territory.
It is through this devolution that women initially became ‘mothers of’ things that were acceptable for a woman to be cast as figureheads of. It was an early expression of inclusion ideology, which changes who gets to do things in lieu of changing how things are done. And while the story of Heumann now describes Heumann as being “proud of herself and the movement that she founded,” there was previously a father and founder of the Disability Rights Movement. Ed Roberts. Like with Patricia Moore, movements morph; because he is better known as being the father of the independent living movement.
The trope of the patriarch appeals to individualist values. He is a good, stalwart man who leads his children into independence. So, why was he usurped by a mother figurehead? Perhaps, because the militarized mindset of founding fathers – willing to take up arms if their authority comes into question – can flare tensions. The diminutive mother, on the other hand, represents a benign mythology of benevolent compassion. Fathers fight. Mothers soothe.
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There is a naive, but sensible impulse that causes liberal minded individuals to believe they are uniquely equipped to enact change: Profound trauma fosters a conviction that the world could be made otherwise. The institutional barriers that are in place to frustrate those efforts often humble that impulse, and through this process, many activists find important ways to make themselves useful — often by contributing to existing efforts.
But there are a few among us who, as a balm for the burn of their dispossession, respond by instilling hierarchies where none previously existed, in order to situate themselves at the top. They seem to hold a belief that they were born for the moment they found themselves in, and through this star-aligned birth, are thus entitled to the benefits of stardom, no matter the cost to others. The innate leadership factor that is often attributed to figureheads is eventually revealed to be an insidious characteristic that allows or compels them to subsume all recognition for the organizing, the risk, and the will of everyone else who was there.
At the moment, threats to 504 are solidifying Heumann’s legacy as an unassailable leader with a growing mythology. What started out as a legislative win is evolving into a story about the full scale achievement of disability rights that was realized under Heumann’s tutelage only to have dissolved in her absence. But what would Heumann realistically do if she were still here?
Revisionist history doesn’t notice what she wasn’t there for, such as the 2017 National ADAPT die-in to protect Medicaid and the Affordable Care Act. But 200 hundred others were there, including 43 demonstrators who were arrested. The Atlantic featured Heumann in a short film they produced about the die-in. Rather than use her media literacy to cater her responses to ADAPT’s goals, she instead reflected on the 504 sit-in from her past, reminding audiences of her relevance and authority. Her lilac boater hat and matching silk scarf and blouse stuck out as a class signifier that placed her at a remove from those on the front lines.
Just as disability as a genre of oppression is rooted in white supremacy, so too are pacification tactics, which were developed to neutralize black liberation movements. William C. Anderson, author of The Nation on no Map: Black Anarchism and Abolition describes figurehead elitism as a safety valve:
“It is sad to see how charismatic and famous activists – leftist, liberal, and otherwise – have positioned themselves as a sort of vanguard whose celebrity is supposed to be a win for us all. Their awards, notoriety, profiles, and proximity to power, not to mention their wealth, are supposed to be a victory for the movement. In reality, they organize nothing and therefore can win nothing. They must invent victories, and we are supposed to take pride in symbolic wins.”
The purpose of a movement mother is to discipline any children who might rebel against those that iconified her, and the role of the movement mother is to embrace the designation. At the time of Heumann’s passing, the first thing visitors of her website would encounter, in bold, above the fold was that Washington Post Magazine headline She’s considered the mother of disability rights – and she’s badass.’”
Similarly, Moore’s Linkedin is a cornucopia of accolades, though her Wikipedia page fails to specify what exactly they’re for. She received her honorary doctorate for being “a true leader in the movement of Universal Design,” which, as a methodology, depends on the extraction of information from disabled ‘users’ that ‘professionals’ then capitalize on. There is a gulf between those who contribute and those who get credit.
So how was she “instrumental in developing Oxo Good Grips”? As Liz Jackson (co-author of this piece) wrote back in 2018, Oxo’s brand story – that co-founder Sam Farber developed Good Grips because he wanted to make it easier for his arthritic wife, Betsey, to peel a carrot – was a lie. The idea had been Betsey’s all along.
There is negligible information detailing how exactly Moore materially contributed to the development of Good Grips. In a 2023 Wired feature, titled She Sacrificed Her Youth to Get the Tech Bros to Grow Up, Moore hides behind NDA’s, leading the reporter to conclude these contracts are why “she is coy about mentioning certain brands and products.” When asked about her involvement with Oxo, she alludes to the grip of the handle, but Industrial Designer Tucker Viemeister is the inventor credited on the patent.
The reporter then pivots, writing “there’s another story from earlier in Moore’s career that I think better exemplifies her work: the time she peed in a meeting room.” And her pattern emerges, when there’s no there there, the mother of empathy can be counted on to make a spectacle of disability. This particular anecdote occurred during the design of Depend incontinence products:
“before a long day of meetings with Kimberly-Clark executives, she pulled the prototype on under her skirt. She took her seat in the conference room and, when the urge hit her, she urinated. Then stood up to check her skirt, rather publicly, for stains.”
Given all of this, what conclusion can be drawn about Moore’s claims that she helped draft part of the Americans with Disabilities Act in 1990, when details about the part she helped draft and how she helped draft it are scant? This is someone who was named by the Industrial Designers Society of America as one of “the most notable American Industrial Designers in the history of the field,” she is a recipient of the World Design Medal, Cooper Hewitt’s National Design Award, she was featured on ABC News as “one of 50 Americans Defining the New Millennium,” she has even been called one of the “100 Most Important Women in America.” Do any of these awarding bodies have protocols in place to determine the veracity of a possible recipient’s portfolio?
Beyond movement motherhood, Moore and Heumann share something important in common: They are both individuals who parlayed a single attention grabbing moment into a lifetime of repute. Heumann rose from the floors of 504 to become a wheeler and dealer for a Democratic party that celebrates her activist tactics as good trouble because they exist in the past, but enacts violence upon protestors for being too disruptive when the same tactics are used in the present. She never stopped being the agitator that brought her notoriety, but she redirected her energies away from the establishment and toward activists who failed to find neoliberal inclusion sufficient.
In his book, William C. Anderson asks “what good is idealizing a revolutionary or radical past if it doesn’t direct you to action in the present?” It is time to shift the focus from the mothers, directly toward the activists that have been undermined by mother figurehood actions and inactions. New generations have wisened up to counterinsurgency tactics, which is what the mother of a movement is – a mother is a marker of a movement being subsumed into the establishment.
Different groups and collectives have implemented methods to thwart the rise of a figurehead neutralizer from within their factions. These efforts are never going to be friction free, but as long as methods remain malleable, they can be effective. ADAPT’s organizing structure of 8-12 “day leaders” for an event is noteworthy in how it also circumvented the media’s insistence on a protagonist. While this may have been why The Atlantic reached out to Heumann for their video, the focus stayed on the collective and their goals in other media.
There are other ‘mothers of’ – each overseeing their own disability establishment circles - and every single one that we have located thus far is a boomer baby. These are women from a shared generation, and it may ultimately turn out that maternal monikers will follow the waning acceptability of paternal monikers. But, for the rest of us, for as much as we are quick to retort that our needs aren’t special, we should probably stop pretending that our so-called leaders are.
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