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"But Zoe's Race reminds us that the values underpinning the disability- and disease-based events aren't inevitable. We can shift our focus from cure to access, or hold the two in tandem, insisting that our present-day body-minds are as important as any vision of the future.”

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“On the mountain trails, I yearn to fly down hill, feet touching ground, pushing off, smooth and fluid. Instead on steep stretches I drop down onto my butt and slide along using my hands and feet, for a moment becoming a four-legged animal. Only then do I see the swirl marks, tiny orange newts climbing around the tree roots, otherworldly fungi growing on rotten logs. My shaky balance gives me this intimacy with the mountains.”

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“Many deaf people claim themselves not as disabled but as of linguistic minority. They locate the trouble they experience not in their inability to hear but in the non-deaf world's unwillingness to learn and use sign language.”

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“This moment highlights how slippery cure can be. On the surface, the drive to eradicate disease and disorder appears to underpin development and production of eflornithine. But actually cures life-saving purpose slips into the background overshadowed by profit making.”

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I found this whole section on deafness and CI's to be very illuminating, and an effective disruption of the idea of "cure". Here, Clare explains how some members of the deaf community locate their supposed "disability" in the ableist societal norms about hearing; simply because they are in the minority in regards to hearing, deaf people have been labeled as disabled. The concept that deaf folks claim as "hearing gain" as opposed to "hearing loss" illustrates how much there is to benefit from within the deaf community, and how many people cannot fathom ever wanting to be "cured" from this part of their identity.

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Clare's description of Zoe's Race was really inspiring, and for me was a bright spot in a book that can sometimes be full of disheartening anecdotes. The difference between this event, where participants "roll, walk, or run either one kilometer... or five", and the charity events characterized by extreme sports is striking, and frankly something I had never considered before (89). The fact that most charity events raising money for those with disabilities depend on able-bodied people completing independent, grueling challenges is ironic (what's a word worse than ironic?), and deserves far more interrogation than it currently receives. I also was struck by the emphasis Clare placed on the importance of actions that focus on the present instead of the future, and that made me realize how most people whose lives are effected by the variations these traditional charity events raise money for never actually see any benefits from it. Making people's homes more accessible and livable, as the funds from Zoe's Race support, is a tangible and experiential result that people will benefit from every day!

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I took careful note of the telling phrases within this passage: "only then" and "gives me." Clare's dis/ability, in these moments, provide a perspective that he would otherwise not see. I felt him saying, "I am brilliantly imperfection!" In the following sentence, Clare expresses that he would lose so much his muscular dystrophy was cured. This passage expands upon the experience Clare described at the beginning of the chapter. Clare was seeking pain relief. The doctor promised a cure (in ten years). There is a disconnect between what Clare is asking for and what is provided. Clare does not desire a cure not only because their dis/ability makes them who they are but because it actually allows them to see, feel, and experience intimate beauty in specific ways.

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The section on Deafness as a dis/ability verses linguistic minority made me think about the use of the internet and social media in wide-spread societal perception. I have seen many "viral videos" of young children having their cochlear implants or hearing aids turned on for the first time. These videos often centered around the child hearing their caregiver's voice and smiling with what people read as joy (even relief)! This passage made me interrogate these seemly harmless "inspiring" videos. Would the same reaction occur if the caregiver was previously communicating with the child through sign language ? Regardless, given that these videos are widespread and our schools/communities remain so segregated, these videos may be the only interact people have with a Deaf person. What perception do the videos leave viewers with?

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I think this is quote represents Clare's feelings about cure and is an overarching theme of this chapter. We all know that Clare is frustrated with the term "cure" and the ideas surrounding it. One of these frustrations relates to how there is a profit from cure. Throughout chapter 6, Clare notes how charity and fundraising events, and the advertising of certain products that lead to "cure" overshadow their true purposes. I understand Clare's frustration here. There have been so many developments in technology, social media, and advertising over the past ten or so years and these developments have definitely impacted our perceptions of certain things.

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I also found Clare's reflection on deafness and how the dis/ability is viewed in our society to be interesting and eye-opening. His quote here emphasizes how ableism affects our norms, such that people who are deaf must find ways to communicate with the rest of the population instead of the other way around. Why can't/don't we learn ASL? Why is there an expectation for someone to adapt their forms of communication to meet another, when the other group doesn't do the same? There is a clear unwillingness from the non-def world to learn and adapt, yet this unwillingness to learn and change is also present amongst the general, able-bodied population in other ways.

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This quote reminds me of the concept we discussed earlier in the year about how change does not occur without dominant social groups finding value for themselves in the change as well. A ramp into a store is useful for a multitude of reasons and that is what helped push for it to exist. Without this profit for dominant social groups, even if they have a lesser need or change is simply a way to make life even better for them rather than the people who need this change to survive or exist in our society, change does not usually happen.

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Page 87, Paragraph 1
"If the U.S. government and nonprofit organizations, private corporations and university laboratories are going to dedicate money and time to the future, they also need to do so for the present."
I think this underlines Clare's point about how our society prioritizes destroying disability and funnels money, time, and attention into trying to attain this future to the detriment of people with disabilities right now. Cure is not actually centered around improving the lives of people with disabilities right now but reaching for a future where those people no longer exist.

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This quote makes me appreciate Claire as a writer -- he is so deeply effective at communicating his ideas through subtle language and syntax. Claire assigns his disability a gracelessness in the second sentence. "I drop down onto my butt" is frank and straightforward, not indicating any depth to the motion at all, nor dwelling on how society might view that motion in the context. But Claire then transforms his motion into an "intimacy with the mountains" with gorgeous descriptions of nature that I never expected in a book about disability.

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"Cure Breast Cancer" races make me so mad. My mom, who has been cancer free for 12+ years, loves a good charity 5k and does the ones on the Chicago lakefront every weekend during the summer. The Komen race is on Mother's Day. My mom wears a pink shirt with white lettering because she is a "survivor" and my dad wears a white shirt with pink lettering like everyone else. The Komen Foundation's relatively shady financial practices have led my parents to not participate in the race anymore. But it feels so gross to have cure specifically situated with femininity and motherhood -- especially when there are so many tangible things that money could be going towards right now for mothers who are undergoing treatment for breast cancer.

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“If we choose to wait for the always-just-around-the-career cures, lavishing them with resources, energy, and media attention, we risk suspending our present day lives. The belief in cure tethers us not only to what we remember of our embodied selves in the past but also to what we hope for them in the future.” Clare touches on the idea that although it is important to look into the future we must also lean into the present and see how we can positively influence change.

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The idea that we need to be more in tune with our society not working to change the ableist ideals many have stored. Those who have a hearing impairment such as being deaf should not feel like a minority, rather they should feel they have something different and special that we will never have. They live life through different lenses in which many of us will not have experience off.