Monthly Archives: July 2021

Ethan Hawke in Gattaca, left, and the cover of Octavia Butlers Parable of the Sower, right. (Getty Images)

A little less than halfway through the 1997 film Gattaca, Irene (Uma Thurman) steals a strand of hair from the desk of a coworker she knows as Jerome (Ethan Hawke), and takes it to an all-night DNA testing booth, passing a woman who is having her lips swabbed just five minutes after kissing her date. A few seconds later, the technician gives Irene her answer: Nine-point-threequite a catch. But 9.3 of what? How does her printout of amino acids translate to a scale of 1 to 10, a genetic quotient that leads the technician to think her boyfriend is a catch?1

After nearly a quarter century, Gattaca has aged disturbingly well. The New Zealand writer and director Andrew Niccol crafted a noir dystopian thriller of a society trapped by eugenic ideology and ubiquitous biometric surveillance. Those with poor GQ are deemed in-valid and condemned to a life of poverty, drudgery, and crime. But those with good GQ also measure themselves against impossible standards, believing that their DNA determines what they should be able to do, and they plunge into depression, suicidality, and self-sabotage when theyre unable to meet expectations. Today, as we charge into an age of biotechnology, the film feels especially prescient, providing a benchmark against which to compare our trajectory. Our capacity for both genetic manipulation and biometric assessment is advancing, but we have not improved our ability to hold conversations about genetics, disability, or even abstractions like the relationship between probability and outcomes. I worry that our Gattaca future is nigh.2

The hair fiber may have scored a 9.3 GQ, but it doesnt come from Hawkes character, whose real name is Vincent. Vincent is an invalid, a child conceived in the back seat of a Buick and allowed to develop as nature sees fit. Hes got a 99 percent chance of developing a heart condition, and his life expectancy is 30 years. Hes also brilliant and wants to be an astronaut, but he has no chance of passing the genetic screening for a space gig at the Gattaca Aerospace Corporation. So he engages in a criminal conspiracy with the real Jerome (Jude Law). Jerome was genetically engineered to near perfection, becoming a champion swimmer and a silver medalist in the Olympics before suffering a spinal injury in a car crash. (Later we find out that Jerome, unable to tolerate being second best, had stepped in front of the car. Its the rare disability-suicide plot point that places the blame on society rather than on disability.) Jerome makes a deal to provide Vincent with hair, blood, urine, and skin samples in exchange for a portion of Vincents salary. The fraud works. Vincent becomes a navigator, but before he can launch into space, the mission director at Gattaca is murdered. A manhunt ensues, the cops find an eyelash from Vincent himself, and the movie rolls forward.3

Its a pretty good plot. Vincent has a genetically engineered younger brother, Anton, against whom the naturally conceived in-valid measures himself, a tension that plays out in adulthood. Vincent helps Irene realize that even if shes not perfect according to the charts (shes valid, but no 9.3), she can do more than she realizes. But its not the plot thats made the story endure; rather, its the films vision of the world.4

The premises of Gattaca feel real not just because its characters espouse long-held eugenic principles in the development of prenatal testing and genetic engineering technologies but because the movie pairs those ideologies with surveillance. Its one thing to have an ableist viewpoint about the value of people, another to have the technology for genetic engineering, and yet a third to build a society around the routine penetration of the body to extract blood, urine, and saliva and measure it against a universal database.5Current Issue

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The film isnt perfect. Aside from the presence of a Black geneticist and a few extras, its world is extremely white, and I dont think thats an accident. As we watch Vincent embark on his early career as a janitor, he provides narration about the times, saying, I belong to a new underclass, no longer determined by social status or the color of your skin. No, we now have discrimination down to a science. Thats nonsense. Ableism and eugenics intersect with racism, classism, and other forms of discrimination. Inventing new forms of discrimination does not erase the old ones.6

Still, a single film, like a single essay, doesnt have to do everything. Make no mistake, our Gattaca future is coming; the technology cant be held back. What we must do now is work to undermine the eugenicist ideologies that will lead those technologies to cause increasingly greater harm. And thats where this movie comes in. When I talk to people about designing babies, I often get assurances that discrimination against kids like minemy son has Down syndrome and is autisticis bad, but wheres the problem in trying to create advantages, to alleviate burdens? Gattaca, however, makes the case that you cannot design your way to happiness and that trying to do so will build a world ever less freeeven for those who achieve high marks in GQ, IQ, or whatever other rubric we use to mismeasure potential.7

David M. Perry8

The events in Octavia E. Butlers 1993 novel Parable of the Sower presage this moment of mass shootings, global warming, en masse migration from California, a pandemic that throws into relief rampant structural inequities, widespread drug abuse, and a presidential candidate who campaigned on returning the country to a sense of so-called normalcy. (In the books sequel, 1998s Parable of the Talents, one politician promises to Make America Great Again.) When the novel was published, it was set 31 years in the future. The gap between the version of life Butler imagined and the one were living in is closing.9

Parable of the Sower tells the story of activist Lauren Oya Olamina, who is 15 when the book begins and lives in an increasingly destabilized Southern California with her minister father, her stepmother, and her four brothers. Like other micro-communities in their Los Angeles County town, the Olaminas and a handful of other families live behind a wall to escape looting, murder, sexual assault, drug abuse, arson, and corporate slavery. Responding to her environment, Lauren has already started to develop Earthseed, the spiritual philosophy she creates based on the notion that God is change. She lives with a condition called hyperempathy, which causes her to become ill when she vicariously experiences the suffering of others. It is perhaps this hyperempathy that makes Lauren so attuned to the impending doom around the corner (literally, for her and her compound). She seems to be the most worried person in her community and suggests that people refine their emergency preparedness for a series of catastrophic events. She reads history books to fortify herself; in a conversation with a friend, Lauren underscores the significance of the Black Death in the 14th century, saying, It took a plague to make some of the people realize that things could change. Eventually her suspicions come true, and Lauren leads a band of travelers to Northern California in search of freedom, paying jobs, and affordable water.10

In a present-day America thats reeling from the toll of the pandemic, the War on Drugs, the prison-industrial complex, reproductive oppression, and weakened labor unions and that is constantly threatened by white supremacy, the cowardice of career politicians, and the avarice of the wealthy, the lessons of Parable of the Sower have practical application. The principles of Martine and Bina Aspen Rothblatts Terasem Movement (founded in 2002), which focuses on nanotechnology and cyber-consciousness, were inspired by the books Earthseed philosophy. adrienne maree browns 2017 manual Emergent Strategy: Shaping Change, Changing Worlds was also influenced by Earthseed. Since last spring, Tananarive Due and Monica Coleman have hosted a series of webinars called Octavia Tried to Tell Us: Parable for Todays Pandemic, in which Butler scholars explore the context and imaginative implications of the books predictions. In an October 2020 interview in The Believer, writer and housing attorney Rasheedah Phillips advised people interested in envisioning survival to start with Butler. She is the person who prepared me, to the extent that I am prepared for this, Phillips said.11

Yet it is not only because of its pragmatism that Parable of the Sower should be considered the more prescient dystopia; it also ingeniously foresaw movements in todays culture to recenter marginalized groups, including young Black girls and women; Indigenous communities, whose botanical and nutritional insights are crucial to the survival of Lauren and her band; and youth, of which the Earthseed collective is mainly composed. Lauren is a fictional forerunner to courageous young people like Darnella Frazier, X Gonzlez, Greta Thunberg, and the late Erica Garner.12

Perhaps the biggest indication of Parable of the Sowers foresight is its understanding that as powerful as empathy is, its not enough (Namwali Serpells New York Review of Books essay The Banality of Empathy is also useful in articulating this idea). When Laurens lover suggests that it might benefit society if most people had her hyperempathy, Lauren calls the notion a bad idea. You must know how disabling real pain can be, she insists. Just as hyperempathy is not enough to save Lauren, it wont be enough to save us. Empathy takes courage, compassion, and an interest in alterity, and many people in her world and ours lack those qualities. But art, at least, can prompt us to think critically. Like empathy, critical thinking requires compassion and a desire to move past pretense toward truth.13

Here again, Parable of the Sower is telling. Use your imagination, Lauren tells a friend. Any kind of survival information from encyclopedias, biographies, anything that helps you learn to live off the land and defend ourselves. Even some fiction might be useful. And the novel has been. But as Lauren learns, reading is only the first step. Explaining her impetus to move beyond studying, Lauren tells someone from her old neighborhood, I thought something would happen someday. I didnt know how bad it would be or when it would come. But everything was getting worse: the climate, the economy, crime, drugs, you know. Yeah, I do knowand all of that requires thoughtful action now.14

Niela Orr15

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Which Is the More Prescient Dystopia? 'Gattaca' or 'Parable of the Sower' - The Nation

Double infections also do not affect the patients condition, even if the variants are different. (Picture courtesy: IE)

A Belgian nonagenarian has been revealed as the first documented case of a person infected with two different SARS-CoV-2 variants at the same time. The 90-year-old woman was carrying both the Alpha variant, first detected in the UK, and the Beta variant, identified in South Africa. She died in hospital five days after being infected in March.

The annual European Congress on Clinical Microbiology and Infectious Diseases discussed her unique case, according to reports. While cases of double infection are rare, it is not surprising, experts toldThe Indian Express. They said a person contracting infections from several persons over a short period is not impossible and has happened before. V.S Chauhan, former chief of the International Centre for Genetic Engineering and Biotechnology based in Delhi said if someone is exposed to multiple infected persons, they can be infected by any or all of them. He added that the virus takes time to multiply and affect all cells. Till then, some cells remain available to host the virus from other sources. Chauhan said such double infection cases were common among HIV patients.

However, the probability of double infections is low because it is not passed on every time an infected person interacts with someone. Shahid Jameel, director at Ashoka Universitys Trivedi School of Biosciences, said the Belgian womans case was only the first one to be detected. But he is certain that such cases have happened across the world, adding that a genome analysis of a sample from the infected person would be the only way to tell. Despite that, the differences in genome sequences in cases of multiple infections are very minor, and are easily overlooked.

Double infections also do not affect the patients condition, even if the variants are different. All variants of the virus affect the patient in a similar way and it is irrelevant if the virus comes from one source or multiple sources. Chauhan said the diseases severity depends on the persons health, immunity, and the virus lethality and not on the number of sources of infection. Jameel said while the Belgian womans case was an interesting revelation, it is not a cause for concern.

Additionally, the current vaccines are nearly equally effective against the virus different variants as well. Chauhan said for all the variants, the medicines and treatment are the same. He added that none of the variants that have emerged are truly escape mutants. If a mutation happens that can escape the human immunity in the future, then there might be some cause for concern.

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Can someone be infected by two coronavirus variants at the same time? Heres what studies say - The Financial Express

Ask any neuroscientist 20 years ago if gut bug excrement could slow down an untreatable brain disease, and theyd brush off the idea without a second thought.

Yet the gut-brain connection has emerged as one of the most tantalizing advances in neuroscience, a true paradigm shift, said Dr. Eran Blacher at Stanford University, who recently published a provocative and award-winning essay in Science.

The crux? For devastating disorders in which the brain or its nerve connections gradually disintegrate, maybe its time to look south of the necktowards the gut.

Youve heard of this class of neurodegenerative disorders. Alzheimers, which slowly eats away at ones memories. Parkinsons, which wreaks havoc on motor control centers. ALS (amytrophic lateral sclerosis, or Lou Gehrigs disease), which gradually robs a person of motor abilities by killing off their motor neurons. Despite decades of research, treatment options are limited.

Perhaps, argues Blacher, our dogmatic focus on the brain is whats been hindering progress. Neuroscience is moving towards a holistic conception of health that considers the brains functions in concert with our other spongy, slippery organs, rather than as a separate entity studied alone in a jar.

What if we could tap into the gut-brain connection, and treat the brain through a remote phone line of sorts through the gut? And even weirder, what if a powerful way to slow down neurodegeneration is genetically-designed yogurt?

Were host to millions of microbes that live in harmony on our skin or inside our organs. Together, they weigh more than the human brain. Normally, its a great symbiosis. Our gut bugs, for example, eat up leftovers and pump out chemicalsmetabolitesthat can help break down toxic food compounds and synthesize critical vitamins that our bodies absorb. Its a zoo in there: thousands of species have already been discovered, and like any ecosystem, their composition can dramatically alter their nearby environment.

Over a decade ago, a slew of studies suddenly transformed the gut into a neuroscientists new favorite organ. In mice, Dr. John Cryan and psychiatrist Dr. Ted Dinan at the University College Cork found that tweaking gut bugs altered a mices behavior. Some became more anxious; others depressed. Yet others showed signs of autism and insomnia.

Wiping out a mouses gut microbiome with antibiotics, for example, can severely impact the brains ability to generate new neurons in the hippocampusa region thats critical for learning and memory. Other studies found that probiotic treatments can help restore depression or anxiety in mice, leading to a gold rush to start treating the brain with carefully-engineered yogurt slushies.

The gut microbiota are considered so necessary and so integrated into host function that some describe this population as an overlooked organ, wrote Dr. M Elizabeth Sublette and colleagues at Columbia University in a previous commentary.

Further studies found that the gut talks extensively to the brain through multiple microbiome phone lines. Gut bugs can pump out chemicals directly into the blood for a straight shot at the brain. Or they can interact with neuropod cells that line the gut, tapping into a direct electrical highway called the vagus nerve to send information up to certain neural circuits in the brain, altering their function.

But what especially caught Blachers eye was another channel: that gut bugs can tweak our immune system, which impacts the trajectory of multiple neurodegenerative diseases, including ALS. While ALS has a genetic basis, its impact only accounts for a measly 19 percent or so of cases, suggesting there are other factors that could be a guide towards better treatments.

I believe that some answers may lie in the gut and that studying the biological processes occurring outside the brain might shed a new light on some old questions in the field and maybe even revolutionize neuroscience, Blacher said.

Blacher and colleagues began with a transgenic mouse engineered with a mutation, Sod-1, that causes a genetic form of ALS.

Within a month, the mice began showing more severe motor symptoms. When placed on top of a rotating beam they fell more often, and were unable to grab onto a hanging wire compared to their litter counterparts with an intact microbiome. Peeking into the structure of the mices spinal cord, the team also found that antibiotics-treated mice had far more cell death in their motor neuronsa symptom of ALS progression.

Because the gut microbiome is sensitive to the environmentwere surrounded by microbes all the timethe team next moved the mice into a sterile facility. There, they were able to compare the gut microbiome between a Sod-1 ALS mouse type and completely normal mice by collecting and genetically sequencing their poop.

Together, they found roughly ten strains of bacteria that rapidly differed between ALS and normal mice. Digging deeper, in a series of painstaking experiments, they then one-by-one reintroduced a strain of bacteria back to the ALS mice, pretreated with antibiotics, to see how they behaved.

We adopted a probiotic approach, said Blacher. The bacteria was mixed inside the mices drinking water, like those in yogurt.

One strain, A. muciniphila, particularly stood out. When given to mice once weekly, their ability to perform on the rotating beam dramatically improvedso much so that they rivaled normal mice up to 80 days after the onset of the experiment, or more than half of their lifespan. They also lived longer on average compared to non-treated ALS mice or those given unrelated gut bacteria. Even more incredible, their brains showed less damage at 140 days old, when the lifespan of ALS mice is only 20 days longer on average.

It seems crazy that eating healthy bacteria can slow down a neurodegenerative disease. The team next used a big data approach to hunt down a source for the improvement. They screened all of the metaboliteschemicals that gut bugs pump out into the bodyand honed in on nicotinamide, a form of Vitamin B thats been a darling for combating aging in the longevity sphere.

Skipping gut bugs altogether, the team next pumped nicotinamide directly into ALS mice. Similar to A. muciniphila, the nutrient triggered hundreds of genetic changes related to brain function, with the most impact on the brains ability to remove superoxide radicalsa type of chemical that tends to bombard and rip up the cells fragile membranes.

While these results are promising, mice and men are very different, and most treatments dont make the leap. The team next took stool samples from over three dozen ALS patients and 29 healthy family members who share the same environment, and genetically sequenced their microbiomes. While the abundance of different gut bug species were marginally significant, the team found changes in several genes related to nicotinamide. Lower levels of the chemical also correlated with worse ALS symptoms.

This suggests a potential involvement of AM [A. muciniphila] that merits larger studies in the future, the authors said.

The field of treating ALS or another neurodegenerative disorder with healthy bacteria is still very young. But whats increasingly clear is that what happens in our gut may have massive, yet undiscovered effects on the brain. Blachers results will have to be tested in humans (some similar clinical trials are on the way).

But with new tools in genetic sequencing, which sometimes allow scientists to dip into the genetic pattern of every cellhuman or bacteriawere entering a new age to rethink treatments for the brain. Add in a dose of CRISPR or other genetic engineering tools, and we could then imagine tailored gut bug treatments, altered to produce chemicals such as nicotinamide, as living pharmacies that live harmoniously inside our guts to delay or even prevent age-related diseases.

Image Credit:Anatomy Insider/Shutterstock.com

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Treating the Brain Through the Stomach: Tweaking the Gut Microbiome Slowed ALS in Mice - Singularity Hub

In the TV series Star Trek: The Next Generation, Starfleet officer Geordi La Forge is blindbut his VISOR (Visual Instrument and Sensory Organ Replacement) and later ocular implants negate his disability. (Alamy)

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Imagining better worlds can help us improve our own, but literary and cinematic utopias often exclude those who dont fit into what are usually racially and culturally homogeneous societies. And whether its 1516 or 2016, utopian thinkers are especially prone to leaving out one group whose experiences and insights should enrich our dreams of the future: the disability community.

For centuries, utopias have presented disability as a personal shortcoming to be remedied, not as an identity to be supported and celebrated. A disability in a utopia is socially undesirablea cause of suffering that does not belong in a place where wholeness of body and spirit is prized. The disability community, however, has a very different view of itself. And understanding what a more inclusive utopia entails shouldnt just inform attitudes about what constitutes an ideal society; it should shape the way communities approach disability in the real world.

The exclusion of disability from utopias reflects long-standing social attitudes. Throughout much of Western history, disabled people were sequestered, either in institutions or at home. Disability wasnt a topic of discussion in polite society, except in the context of charitable activities. When characters with a disability or an illness do appear in utopian worlds, as in Thomas Mores Utopia (1516), they serve as plot devices that help develop the nondisabled characters around them. Mores denizens find pleasure and fulfillment in caring for the sick, of whom we learn nothing. Rarely, as in a text like Sarah Scotts A Description of Millenium Hall and the Country Adjacent (1762), the authors deal directly with disability and its policy implications. Scott proposes that disabled people should be treated with dignity and respect, not exploited and housed in workhouses, a sentiment that is unfortunately still radical.

The mere nonexistence of disabled people wasnt enough for writers like H.G. Wells and Edward Bellamy; for them, that absence was a desirable consequence of eugenics, a movement they enthusiastically supported. Bellamys Looking Backward (1888) positioned crime as an illness, at one point stating that all cases of atavism are treated in the hospitals, reflecting the belief that genetics determined criminality. Wells revisited eugenic and utopian themes over and over in his work, writing in 1901 that society should check the procreation of base and servile types, of fear-driven and cowardly souls, of all that is mean and ugly and bestial. He also noted that people with impairments and mental illnesses should be killed or not permitted to propagate. Many feminists of the era were also proponents: Charlotte Perkins Gilmans Herland (1915) envisioned a harmonious society without men, where eugenics could hone the women of Herland to perfection.

In the late 19th and early 20th centuries, utopian fiction advertised the idea that it was possible to mold better people through the judicious application of breeding, sterilization, and euthanasia. Popularized by texts like Wellss The Time Machine (1895), which imagined humans evolving into a twisted and vile race called the Morlocks, eugenics took hold in England and the United States. But the ideas didnt stay there. American works on eugenics influenced the Nazis, who deployed utopian thinking with tragic consequences.

The visible man: H.G. Wells popularized eugenics in his utopian-themed science fiction books. (Historical Picture Archive / Corbis via Getty Images)

Utopian erasure of disability takes many forms beyond crude eugenics. In Star Trek: The Next Generation, Starfleet officer Geordi La Forge is blindbut his VISOR (an acronym for Visual Instrument and Sensory Organ Replacement) and later ocular implants negate his disability. He, in fact, has better vision than his sighted colleagues. Even then, La Forge is one of the few disabled characters in the franchise, a reminder that in this longed-for future, disability is no longer a problem, whether genetic, the result of an accident, or the cost of war. Thats seen to striking effect with Captain Christopher Pike, who first appears in the Star Trek universe as a wheelchair user but, in a forthcoming spin-off that begins before he is injured, is able-bodied. Star Trek has had diverse casts, but it has largely failed to include disability within that diversity.

Science fiction also raises the prospect of using technologies like CRISPR to edit the human genome and thereby eliminate genetic disabilities. The dystopian film Gattaca (1997)whose name is derived from the four nucleotide bases of DNA: guanine, adenine, thymine, and cytosineillustrates the dangers of humanitys hunger for genetic engineering. The film is set in a society with widespread prenatal gene editing, but Vincent Freeman (Ethan Hawke) was conceived naturally and faces discrimination. As an in-valid, he chases his dream of going to the stars. Gattaca asks the viewer to consider the costs of a eugenic utopia, challenging rhetoric about the promise of genetic modification by taking it to a logical extreme.Current Issue

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The world of Gattaca isnt necessarily far off. Some advocates fear genetic testing and editing may make Down syndrome, dwarfism, autism (which hasnt been decisively linked to any specific genes), and numerous other impairments and identities things of the past. In a sense, the goal of some nondisabled-led disability organizations is ostensibly utopian: building a better world by eradicating disability. For example, Autism Speaks, an organization that purports to represent the interests of the autistic community, still foregrounds solutions for autism, despite the fact that most autistic people are not interested in being cured and view their autism as a sociocultural identity and experience, not a disease. The vision of groups like Autism Speaks is arguably dystopic, imagining a world where a swath of humanity has been eliminated for its own goodan argument that weve seen play out before. In 1927, Supreme Court Justice Oliver Wendell Holmes Jr. concluded that the state has a compelling interest in forcibly sterilizing disabled people, infamously writing in Buck v. Bell that three generations of idiots are enough. Devaluing disabled lives did not stop there. During the coronavirus pandemic, care rationing of ventilators and some kinds of treatment targeted disabled peoplesome of whom, like Sarah McSweeney in Oregon, died because of it. Additionally, euthanasia continues to be pushed on the disability community by some proponents of right to die legislation who imply that disability alone is grounds for physician-assisted suicide.

To conceptualize what disability in utopia might look like, its critical to understand disability as an identity rather than an adverse life experience, as the noted science fiction author and visionary MacArthur Fellowship recipient Octavia Butler did with hyper-empathy syndrome in Parable of the Sower (1993). Sower is the first in a two-book series that presciently takes on climate change and economic inequality, featuring a young woman, Lauren, who feels the emotions of those around her, such as pain or fear. She escapes into the world of her mind, developing the beginnings of a religion, Earthseed. While her disability is only one element of Laurens intense experiences, its an important part of who she is and how she relates to the world.

Are you fit?: A movie poster for the 1934 film Tomorrows Children, which criticized the legal eugenic practices of the era. (IMPC via Getty Images)

Disabled people can and do lead fulfilling, rewarding livessometimes because of the disability, not in spite of it. Their experiences are diverse: Not all disabled people feel the same waymany do want to be cured or do not view disability as something to celebrate. Its a big community: About 26 percent of Americans live with an impairment that affects the way they interact with the world, and with long Covid and PTSD originating in traumatic climate events, those ranks are swelling.

Disability culture is lively, complex, and integral to society. But even talented writers and filmmakers struggle to envision how disability might manifest itself in a utopian society. Utopia, they reason, should have ramps and elevators, way-finding tools for blind and low-vision people, and interpreters for the Deaf community. This future is much like the present, but with broader doorways. It is the kind of policy-centric utopia seen in Adolf Ratzkas 1998 short story Crip Utopia, which depicts a world in which everything is accessible and no one needs to fight for elevators or file repeated insurance appeals.

Focusing on accommodations, however, leaves out more visionary possibilities. In addition to physical access, one might consider emotional access, or what Mia Mingus terms access intimacy, which she defines as that elusive, hard to describe feeling when someone else gets your access needs. It is a much deeper approach than merely adding ramps. It recognizes access as a complicated, evolving need that may interact with other aspects of someones identity and experience; for example, a Black woman who develops PTSD after witnessing police violence may experience triggers in ways that vary depending on where she is, feeling safer in Black spaces than white ones or needing more support in environments that remind her of her traumatic experience. It is a fundamental element of cripspace: spaces curated by and for the disability community, with the needs of disabled visitors emphasized.

A utopian cripspace captivated viewers of Nicole Newnham and James LeBrechts Oscar-nominated Crip Camp (Netflix, 2020), which provided a lively, intimate, and disability-centric glimpse into the independent-living movement. The film revolves around Camp Jened, a summer camp for disabled youth where disability is embraced, welcomed, and honored rather than simply being accommodated, a revolutionary experience for people who may have spent their whole lives feeling shut out. Such spaces can be intimidating for nondisabled people, who are not accustomed to being in environments that do not cater to their needs and expectations, let alone those that celebrate disability instead of hiding from it. This is a striking reversal of the usual narrative, and thus, in its own way, is a utopia for disabled people who want to be the heroes of their own narratives, not plot devices in others.

A cripspace is an environment that pushes back on cultural attitudes about disability; it is a room where disability is at the center of the conversation, one where all participants strive to make sure everyone is included. That may involve making way for a wheelchair or ensuring that someone can see the sign language interpreter, but it also includes honoring differing lived experiences of disability and holding space for one another. Cripspaces do not just respect disability identity. Race, gender, sexuality, class, parenting status, adoptee experience, and more are considered in a cripspace, and their interactions with disability are acknowledged.

The cripspace engages with difference in a way that can and should inform utopias, which typically function by eliminating difference. The consequences of things like colorblind ideology are both painful and obvious in the present moment but are ignored in visions of the future. The cripspace knows what society struggles to understand: Pretending that differences do not exist does not eliminate them; it just shuts people out.

In a culture where disability is unwelcome, its presence in utopia may be unsettling to some, but society can benefit from conjuring worlds that model diversity and inclusion, where differences are celebrated rather than flattened.

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Disabling Utopia to Save It - The Nation