Raising Henry: A Memoir of Motherhood, Disability, and Discovery
“. . . captivating, informative, and provocative.”
Rachel Adams’s memoir Raising Henry: A Memory of Motherhood, Disability, and Discovery beautifully captures the joys and challenges of having a child with Down syndrome in New York City.
Dr. Adams’s self-reflective and at times humorous work provides a touching and sincere view of the complexities of having a child with a disability and the accompanying challenges, joys, frustrations, and unexpected pleasures.
What makes this story more compelling is that prior to Henry’s arrival, Dr. Adams, a Columbia University professor, focused much of her scholarly endeavors on researching and writing about freak shows. Her story provides a fascinating look at her transformation from a disability studies scholar to a mother of a child with a disability and the unexpected feelings that surfaced.
Dr. Adams describes Down syndrome in a disability studies framework and challenges the pervasive medical model of disability typically placed on children with Down syndrome in society. She importantly highlights how disability is regularly forgotten, ignored, and left out of diversity initiatives and still today that disability is often “excluded from the rights and responsibilities of citizenship, and even deemed to be less than human.”
Dr. Adams hauntingly captures the frightening depiction of the historical treatment of Down syndrome children and the misguided institutionalization process of past generations. She provides a well-researched backdrop of disability related policies found in the United States and the subsequent effects these policies have on families with children with disabilities at the local level, as well as the challenges of negotiating a complex and bureaucratic system nationally.
Dr. Adams describes in detail the process of obtaining and managing early intervention services in New York City and the complicated transition to special education services.
While New York State provides good and equitable services to families with children with disabilities, the process of figuring out the system is a daunting one. Dr. Adams highlights the highs and lows and the system and strongly argues for the absolute need for early intervention services for all children with Down syndrome. Nicely touched upon is the tricky balancing act between obtaining necessary services while also fighting for inclusion.
Dr. Adams provocatively addresses the impairment focused mentality largely present in the medical world, especially toward Down syndrome and the consequent lack of funding for Down syndrome research because it is considered a preventable disability.
She details the struggles of women who consciously decide to keep Down syndrome babies and the unveiled criticism from medical professionals. Poignantly addressed is the dominant focus of Down syndrome being categorized as unhealthy and in need of curing, thus neglecting healthy Down syndrome children and their needs in the same vein of cochlear implants being pushed on healthy Deaf children.
Dr. Adams beautifully ties these experiences back to freak shows, this time personally identifying as the freak on display in the medical world.
Although it is important to point out that Dr. Adams’s experience is one of a privileged person living in New York City and not representative of all parents with children with Down syndrome, Raising Henry is captivating, informative, and provocative. It strongly captures Henry’s “voice” making this memoir highly recommended for parents, guardians, and families with children with disabilities.
This reading is also a must read for special educators, educational administrators, social service professionals, disability advocates, policy makers, scholars and students of disability studies, and medical professionals.