A treasure trove for disability studies learning and just generally a dense and ambitious text that packs a lot of information and astute analysis into an average page count. I see some reviewers here calling this unfocused and without a central binding point but I disagree; while each chapter has pretty starkly different premises, Kafer ties it all in with the central idea of futurity, specifically in how the logic of ableism excludes disabled people from the vast majority of envisioned "better futures". Centralizing and celebrating the nearly infinite variety of the human experience is a focal point of most progressive visions of the future, but even in much leftist theory and practice, this is still not the case for the disabled, whose multiplicity is often essentialized even by the well-meaning as being tragic, as a mistake, as grotesque etc. Kafer's goal with this project is to make space for the possibility of futures in which disabled body/minds are as valuable in their multiplicity as any other marginalized demographic, and to criticize and deconstruct models in which a sick body is essentialized as an inherently "broken" one (a notion constructed almost entirely by the perspectives of the nondisabled).
Suffice to say, I tend to have very mixed feelings on this from a personal perspective, considering my own disability is limiting to the point of torture and I would much rather exist in a body without it, and I was initially afraid that Kafer would defer too stringently to the social model and deny physical reality with the notion that disabled oppression is only because of social barriers and not because of the limitations of our bodies that are often inherent in our conditions. Thankfully, Kafer has plenty criticisms to spare for the social model and makes space to acknowledge disability's tragic elements as a valid aspect of our aforementioned multiplicity, though the body's tragedy is not the focus here (which is fine, she can't tackle everything in one book) and moreso the limiting of our potential based on deeply ingrained cultural notions about what it means to be disabled and how, as I said, these notions will leave us displaced in a future without any space for us if they are not taken to task.
I have critical (or really just emotionally-charged) feelings on some sections of the book. The back-to-back chapters on the Ashley X case and Candy McCullough/Sharon Duchesneau (this book being my first time learning about either) were a rollercoaster of visceral emotions for me; not only in the infuriating way every aspect of Ashley's autonomy was controlled by her parents and doctors for the sake of a nebulous future defined only by the nondisabled, but also frustration at Kafer for the odd disparity with which she treats this case and the latter in the respective essays concerning them. She rightly centers Ashley as the subject (not the object) of her case, but does not once do the same for the child of Duchesneau and McCullough, who the parents intentionally conceived aiming to make deaf through the employment of a deaf sperm donor. I understand this was a complicated situation and much of the backlash was from conservative Christians singling out the couple's homosexuality more than anything, but this is one instance where Kafer is so focused on her model of disabled futurity in a way that felt dismissive of one of the most important subjects of the situation, that being their child. Like, she defers to the subset of deaf people (such as McCullough/Duchesneau) who don't consider their condition a disability, but seems to unintentionally handwave away any deaf person who would consider it a serious impairment on their life; who was to say the couple's child would not be among such, and how is it justified to make that decision for him before he is even born? Of course this is further complicated by the fact his deafness wasn't guaranteed anyway even with the contribution of the donor, and of course any difficulties he may have had would be tempered by growing up in a family without deaf stigma, so it's not like what I'm saying here is open and shut, but it still leaves me extremely uneasy that a parent has the capability of making such momentous physical decisions for their child before they are even capable of autonomy. I am biased here because a large component of my condition is hearing-related, so maybe I am falling victim to the difficulty of imagining a disabled future as Kafer spends the book critiquing, but just...gah, I don't know. It's the power of the parents to make such decisions that unnerves me here, and I feel like Kafer fails to interrogate this the way she does with the Ashley X case, making her framing and dissection of the deaf couple and their son's case feel very lacking to me. I understand the nuance of this that can't be captured in a single essay, and I'm willing to think more on the ethical implications of this, so if anyone reading this is part of the deaf community and sees fit to take my opinion to task here, I'd love to have a discussion.
The chapter on cyborg theory was also a low point for me, though less because of any actual fault with Kafer and more so a skill issue on my part, because I pretty much just had no idea wtf she or any of the thinkers she was citing were talking about during this section aside from a vague understanding of the premise, and my lack of familiarity with Harraway's original essay wasn't helping matters. The obscure language of western philosophy is fine when I'm reading something more theoretical but when it comes to texts that are largely about activism and lived marginalized experience, the focus on this type of language just feels overly obscure and inaccessible to anyone outside academics, of which most disabled people are not, it turns out.
Now for the good, of which there was a lot more. The essay on crip time is excellent, possibly the best and most cogent tackling of the subject I've read yet, and some of the cited excerpts got me to think about my relation to my own illness in valuable ways I hadn't considered before. I was particularly moved by the section on nostalgia for the "lost" (pre-diagnosis) body and how the very structure of crip time calls this binary thinking of "disabled/not-disabled" into question. One of my favorite passages in the book:
"People with "acquired" impairments... are described (and often describe themselves) as if they were multiple, as if there were two of them existing in different but parallel planes, the "before disability" self and the "after disability" self (as if the distinction were always so clear, always so binary). Compulsory nostalgia is at work here, with a cultural expectation that the relation between these two selves is always one of loss, and of loss that moves in only one direction. The "after" self longs for the time "before", but not the other way around; we cannot imagine someone regaining the ability to walk, for example, only to miss the sensation of pushing a wheelchair or moving with crutches. Contrast this nostalgia for the (imagined) disabled body with the before-and-after imagery in weight-loss advertisements. As Le'a Kent argues, "The before-and-after scenario both consigns the fat body to an eternal past and makes it bear the full horror of embodiment, situating it as that which must be cast aside for the self to truly come into being." Elena Levy-Navarro extends Kent's argument, describing fat people as "history itself - that is, they are the past that must be dispensed with". Fat bodies and disabled bodies appear in different temporal frames here, but neither is permitted to exist as part of a desired present or desirable future."
As the subsequent quote from Susan Wendell about her ME diagnosis illuminates, however, it isn't as simple as "before and after", a truth I've long known but becomes difficult to internalize when living in a suffering body. I may give everything to find relief for said suffering body, but would I trade every aspect of the person I became internally as a result of it? No, and even in the case of a complete physical cure I would likely still identify as disabled; it's a category that socially ingrains itself in you beyond linear time and linear conception of identity. And while it's hard to justify the level of limitations/trauma with an "everything that happens for a reason" mindset, I still do cherish the valuable lessons I have learned about myself and the world that would not have been possible when I was able bodied. This section constituted what I thought was Kafer's best argument for disabled futurity and multiplicity - to deny strict, binary definitions of disabled subjectivity and allow for ostensibly infinite reinterpretations of our pain, limitations, and place in the world.
Another section I highly appreciated was the one on environmental accessibility for disabled people, like literally "holy shit thank fucking god someone else is talking about this" levels of appreciation because as someone who needs technology to have a fuller life, the prevalence of anti-tech, anti-online communication nonsense that is now pervading cultural discourse has been getting increasingly concerning, and Kafer tackles the broader ableist implications of this over a decade before the "touch grass" rhetoric took off. In a criticism of Edward Abbey's Desert Solitaire: A Season in the Wilderness, Kafer writes:
"Abbey's assertion that we must get out and walk, that truly understanding a space means moving through it on foot, presents a very particular kind of embodied experience as a prerequisite to environmental engagement. Walking through the desert becomes a kind of authorizing gesture; to know the desert requires walking through the desert, and to do so unmediated by technology. In such a construction, there is no way for the mobility-impaired body to engage in environmental practice; all modalities other than walking upright become insufficient, even suspect. Walking is both what makes us human and what makes us at one with nature. ... By implying that one must have a deep immersion experience of nature in order to understand nature, ecocritics create a situation in which some kinds of experiences can be interpreted as more valid than others, as granting a more accurate, intense, and authentic understanding of nature. They ignore the complicated histories of who is granted permission to enter nature, where nature is said to reside, how one must move in order to get there, and how one will interact with nature once one arrives in it."
The implication here is of course that the disabled body is inherently separate and closed off from nature, that any experience with nature that is not congruent with the hegemonic conception of what a body is (and what nature is) is invalid and wrong and inadequate, and that only by living up to this status quo standard of embodiment can one become "real" (by the nebulous standards of the able bodied). But as someone who lives in a body in which natural processes are constantly foregrounding themselves in "extreme" ways, I'd argue I have just as much experience with nature as someone who is privileged enough to take daily outdoor hikes. But good luck having this conversation with able bodied people on social media, who think the answer to (for a culturally prescient example) the increasingly problematic influence of the corporatized internet is throwing everyone's phone in the ocean instead of, y'know, pushing back against corporate overreach and making social media and the internet better for the sake of vulnerable populations who may need it to be communicate/be part of nature and community. Once again it is these rigid binaries that infect the minds and rhetoric of even the most well-intentioned - either you're "natural" (offline) or "unnatural" (digital), either "living rightly" (being abled or cishet) or "living wrongly" (disabled or queer), etc. etc. No space is left for nuance or acknowledging the complex in-between state in which the vast majority of people and subjectivities exist in; there is only black or white, one or the other, the machine world or the green world, and never both at once. At this point it should be clear how damaging this is to disabled populations and marginalized demographics in general.
There's a lot more I could say, like I said this is a densely packed text, but I'm probs coming close to reaching Goodreads' absurdly scant character limit so I'm just gonna wrap it up here, but I think I've more or less covered the bases of everything that I wanted to talk about and this book did a very good job of enabling Conversation the way she set out to accomplish in her introduction. It's not perfect but I highly recommend this for people interested in academic disability studies and learning more about the struggles we face in general, as well as cogent alternatives to the current models we have of talking about disability and what can be done to envision and indeed enable a world more fit for our participation in it.