Raising Henry: A Memoir of Motherhood, Disability, and Discovery by Rachel Adams

The offending photograph of "privilege."

The offending photograph of “privilege.”

After reading Cristina Nehring’s breathtakingly nasty review (described in the previous post) of Rachel Adams’s Raising Henry:  A Memoir of Motherhood, Disability, and Discovery (Yale University Press, 2013) I just had to read it myself.  So, a borrowed copy from our in-state interlibrary loan system arrived this week, and I’ve spent the last few days in my head with Rachel Adams and her family as they adjust to the surprise of having a child with Down syndrome.  I found the book smart, funny, and incredibly moving.  I also ordered a copy of it for our university library, as I hope it finds a wide audience of readers among parents, teachers, therapists, and people who work in medicine.

Raising Henry is also very self-deprecating–so many of the scenes that Nehring pretended to be offended by are clearly moments in which Adams is holding herself up for criticism or even ridicule.  One of the things I really like about Adams’s style is that she doesn’t brook any false piety about motherhood.  She doesn’t want to be informed that Henry is an “angel” sent to her by God for a special purpose.  She’s a secular (and highly successful) academic:  before becoming a mother, she loved having an entire room of their apartment as her office, where she could “work in pajamas and screen my calls, surrounded by piles of books and notes.”  (Isn’t that the fantasy of every humanist you know?  Those of us who live outside Upper Manhattan, where third and fourth bedrooms are much cheaper to come by, are frequently living that dream, Historiann included!)  When she and her husband move into a two-bedroom apartment of their own upon the birth of their first (non-disabled) son, she confesses to “imagining what it would be like to write in his big sunny room, my research spread out in the space that now held a crib, a changing table, and growing numbers of brightly colored plastic toys,” (82).  Like youth, expensive real estate is sometimes wasted on the young.

Adams is also the author of Sideshow U.S.A.:  Freaks and the American Cultural Imagination (University of Chicago Press, 2001) and a scholar of disability studies, and she incorporates insights from her decades of research in this field into her book about her younger son, Henry.  As both a scholar in that field and the parent of a child with Down, she alternates between working to make the world more accepting of people with physical and intellectual disabilities and the lure of medical “cures” for the condition (drugs that may improve cognition and stave off early dementia; plastic surgery to alter the facial characteristics of Down syndrome–who knew?)

One of the strongest parts of her book is her diagnosis of the medical community’s inability to see children with Down syndrome as anything but “patients,” “sufferers,” or otherwise bearers of a medical condition that requires surgical or medical treatment rather than patient accommodation by educators and the public at large.  As the mother of a loving and very much loved child, she resents the fact that physicians and genetic counselors see the birth of Henry as something for which they must apologize and console her.  (To be fair, many children with Down have heart defects and other life-shortening or deadly conditions; her son is among the fortunate Trisomy 21 individuals who did not require cardiac surgery as a newborn.)  She is flooded with relief when people congratulate her on the birth of Henry, as they would the parent of any normal newborn, and resentment for the questions about genetic testing and the unspoken, unspeakable question, “why didn’t you abort?” 

The heroes in this book are the small army of early intervention therapists who swarm Adams’s apartment within weeks of Henry’s birth, working with him on his muscle tone, socialization skills, cognition, play, and eventually, literacy.  Adams writes that “when we started early intervention, I discovered that my city is home to an army of therapists, almost all of them women, who spend their days traveling from home to home, lugging backpacks full of paperwork and equipment to treat their clients.  For years I must have passed them on the sidewalk and shared seats with them on the bus, but Henry made them visible to me,” (86).  It’s these women who recognize Henry’s achievements and make Adams hopeful about his future, rather than medicalizing him or turning him into an exhibit in a clinical freak show for residents who–because of the panel screen, amniocentesis, and legal abortion–have probably seen very few children with Down syndrome.

Interestingly, there appears to be little if any clearly gendered component to the medical/pathological view of Henry versus the early intervention/theraputic model.  The M.D.s in Adams’s book tend to be the bad gals and guys, and the female gynecologist comes off as just as much as an insensitive jerk as the male geneticist Adams calls “Dr. Marburg” (after Marburg hemorrhagic fever) who schedules appointments with Adams and Henry apparently just to use Henry as a teaching tool for his residents.  After yet another visit in which the geneticist offers nothing to Adams but another line of residents invited to poke Henry and describe the physical characteristics of Down syndrome, she writes, “I perched on my seat, silent and incredulous.  It was 2009.  We were sitting in the office of a respected hospital in New York City, but this felt too much like a freak show, with Henry and me as the main attractions,” (113).

One aspect about gender and care work I would have liked to see discussed more is a brief moment towards the end of the book in which Adams expresses frustration with the fact that she is the only parent responsible for organizing and scheduling Henry’s battery of therapists and early interventionists.  After Adams and her husband get everything they want for Henry as he transitions to preschool, he expresses frustration that she “can’t. . . take one minute to be happy about what we’ve done?  Why do you always have to go straight to the negative?  Why are you turning this into something bad?”  She answers him honestly:  while he gets to escape in a taxicab downtown to his law firm, “I have to do all the paperwork to make it happen! . . . . Your job is done.  On paper, we got Henry everything he needs.  But now I have to set it up.  I have to find the therapists.  I have to make the schedule.  I have to figure out how to get him there and back.  Sometimes I just feel overwhelmed,” (222).  But, Adams clearly wants to stay married to this guy, so I get it why she doesn’t want to pick at that scab any more systematically in her book.

Finally, I want to address one aspect of Nehring’s mean review, when she accuses Adams of overweening “narcissism” and “privilege” in part because she hires a professional photographer a few times to take pictures of her with her son.  How many mothers can identify with her fears of never appearing in the photographs with the children because she’s the only parent who picks up a camera?  I think there are millions upon millions of photos and albums full of children and their daddies, most of whom weren’t the primary caregivers to their children.  I think there are millions upon millions of mothers who resent the fact that their children and grandchildren may never wonder, “who took that picture of us all having fun, after she baked the cake and arranged the birthday party and invited all of the friends and relatives?” and will only wonder, “why don’t we have any pictures of Mom?”

This part of Nehring’s review seems especially nasty in retrospect, because motherhood, memory, and loss permeate Adams’s book not because it’s a memoir by a woman who has a child with Down syndrome, but because the author lost her own mother to cancer when she was six and her mother 42.  It’s those chapters that had me sobbing, not the chapters about Henry, which are full of his loving, playful, and determined spirit, which was carefully identified and cultivated by his therapists and teachers.  As Adams demonstrates, the vastly improved outlook for Henry and most children with Down of his generation is due to the determined and sustained efforts of legions of early intervention specialists, educators, and mothers.  Who can blame a woman for wanting to create a lasting memory of this work?

21 thoughts on “Raising Henry: A Memoir of Motherhood, Disability, and Discovery by Rachel Adams

  1. Thanks for the detailed exposition of Rachel’s and Henry’s saga. Making a montage of about a dozen similar or related encounters we saw, plus wife, comes very close to the post’s details. The heart defect baby whose mom gave up and dad had to pick up the pieces. The Down Syndrome brother who held the family together with his generosity and love until his fifties. My wife’s difficulties and my own chronic monster disease. (No pity needed, I climb mountains.)

    One small disagreement. Seems to me that mean reviewers should be completely ignored.


  2. Thanks! I think it’s well worth a read.

    I mostly ignored the review in that I didn’t quote from it. It appears to have completely backfired if the meanie wanted to suppress interest & sales.

    The question of disability & siblings is an interesting and difficult one. My mother grew up knowing that she’d be responsible for her older sister’s care, and that has come to pass. Fortunately, she’s still able & willing to help my aunt, and fortunately my aunt is grateful and agreeable. However I can see that many siblings will resent the responsibility to care for another, or hate to be dependent on another.

    It’s really difficult to be a parent of a disabled child in this country, because these parents must accept the responsibility of caring for the child entirely on their own. How much likelier would parents be to go forward with a genetically imperfect pregnancy and/or raise the child themselves if they knew that the medical care for that child wouldn’t be their private burden, but would be covered by universal health care as an entitlement? BTW, in Adams’s account, New York City seems to be a great place to have a disabled child (and Colorado not at all, by comparison), because of the number of therapists available and because the state appears to have generous funding for assisting disabled children.


  3. If it is in fact so that New York (state) has a notably good approach to childhood (and other?) disability, I wonder if any of that traces to the gubernatorial years of FDR (1929-1933)? That would be at the most a tiny part of the mosaic in question, and I know nothing at all about the subject, but it did occur.

    Whatever the challenges and possibly heartaches of parenthood in these circumstances, it certainly would be soul-numbing to be routinely condoled over the arrival of offspring, whatever their condition.

    I’ll have to go back through old family photographs to look into ratios about who was holding the camera and who was holding the kid. An interesting hypothesis.


  4. Thank you, Historiann. I daresay Rachel Adams (I don’t know her) appreciates your thoughtful read of her book too. She may have foreseen some mommy-wars hostility, but I bet she never saw this supportive attention coming.


  5. Doesn’t anybody make family portraits anymore?

    We didn’t do this when I was growing up but a picture of all of us together, just as we are, is the one thing I ask for on Mother’s Day. There is a funny series of pictures with bobble headed babies looking everywhere except toward the camera as dad ran back and forth resetting it, a picture at a lake we thought we’d never get to while hiking, the last picture in our old home town, it’s all excellent.

    Also, thank you for the excellent review.


  6. Thank you for the wonderful review, H. I know someone who terminated a pregnancy of a child with Down’s because of the issue of the sibling’s responsibility. It was an agonizing choice, and it haunts them.

    @truffula – i like to take family portraits as a series. We have a couple of them, consisting of 4 pictures, showing the degeneration of the attempt to get the kids to sit still as it unravels. They are not “good” pictures, but they make me laugh and laugh every time I see them.


  7. Trisomy patients are easily among my favorites. Yes their medical complications can be a nightmare but by and large they are gregarious, happy, and have a wicked sense of humor. I am not the least bit insincere when tasked with breaking the usually obvious news to the new parents of a child with trisomy 21 in making sure that the first words out of my mouth are “congradulations”. Learned that one from a mom who expressed dissapointment similar to Adams’ at the medical communities dour deportment when examining and treating their new baby.


  8. Very nicely written review. Just one thing – the disability rights movement recommends that people don’t refer to people with disability by their disability, but always use people’s first language. We say a kid with Down syndrome, not a Down child. It’s very important that we think about anyone as a human being, first and foremost.


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  10. I rarely leave comments online, but Historiann, I have to thank you for this generous, thoughtful, and very comprehensive review of my book. When I write a book, I know that not all reviews will be favorable, but it is so nice when they are, especially when they respond with such substance. I told myself that such a gratuitously nasty review as the one I received in The Chronicle would bring more readers (hopefully with opinions of their own), and it is gratifying to see the truth in this.
    Thank you.


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  12. I have been a pediatric nurse and a pediatric nurse practitioner for over 30 years, and I teach nursing students at a well respected university and medical center. It has been my pleasure to take care of many children with Downs syndrome. I also have friends and acquaintances who are parents of children with Downs syndrome. I could not even finish the book, as Ms Adams descriptions of the reactions from health providers was so completely discordant with my own experiences.


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