In A World Without Martha: A Memoir of Sisters, Disability, and Difference, author Victoria Freeman tells two parallel stories: that of her sister Martha who was born with Down Syndrome and institutionalized at the age of two, and that of Freeman's own journey through pain, guilt, grieving, and eventual acceptance as she navigates her feelings around her relationship with Martha.

Martha was born in 1958 in Ottawa, and at this time, "her birth was considered a calamity by all those attending and all of those who might have loved her" (p. 7). That same day, the doctor suggested that the baby be sent to an institution. Friends sent condolence cards instead of congratulatory wishes. Martha's mother made the decision to bring Martha home, where she lived for 20 months until being sent to Rideau Regional Hospital School in a small town two hours away. Much is unknown about the experience that Martha had at Rideau, which closed in 2009, but given what is known about similar institutions and a later class action lawsuit alleging abuse and neglect, one can assume that Martha might have a had a richer and healthier life at home with her family had they opened their hearts and minds to her.

Martha lived at Rideau until the age of 15 when the recommendation was made to place her in a community setting, but not in her family home because it had been made clear that the Freemans did not want her to live with them. Martha moved to a boarding home with the loving and supportive Zaretsky family with whom she lived until her death from a brain aneurysm at the age of 44. The Freemans stayed in touch with Martha until her death, but she was always a peripheral member of the family.

The overriding theme running through the book is the way that Freeman's love for her sister is clouded by the deficit lenses through which she comes to understand Martha's disability. During the time that Martha lived at home, Freeman was thrilled to have a baby sister to play with but observed the cold and distant way that her parents interacted with Martha, stating, "I was aware of the difference in their treatment of us and of my privilege in enjoying my parent's love" (p. 37). Two years later, when Martha's mother becomes pregnant with a presumably able-bodied child, the family arranges to send Martha to the institution. Freeman's impressions of Martha then began to shift, as she says, "somehow I came to understand that Martha was different from other little sisters….There was something wrong with her, something I couldn't see or understand, but she would never be like me; she would never do what I could do" (p. 43). This rejection of Martha endures throughout Freeman's childhood, cemented by awkward visits home and disorienting trips to Rideau. Freeman describes many happy memories as a child and a relatively "normal" life, but with an underlying current of anger. She was furious that her sister had been taken away from her, confused by the reasons why, and terrified that the same thing could happen to her with a single misstep. In addition, she experienced deep feelings of guilt for rejecting her sister, even though it was the adults in her life who made the decision to send her to Rideau.

As a young adult, Freeman began to identify and grapple with her conflicted feelings. She describes feeling as if her body were split in half, and as though Martha were inhabiting her left side in the form of a ghost. She says, "I had never believed in ghosts or spirits, but suddenly I knew that I was haunted - or possessed - though it seemed to be Martha's spirit or soul. Which was strange because my sister was very much alive and living in Kingston with Mrs. Zaretsky" (p. 198). Over time she began to understand that this feeling of duality was the manifestation of the tension between her love for her sister and her deep guilt for abandoning Martha, anger towards her parents, and frustration with a society that frames difference as undesirable. Simultaneously, Freeman was navigating her gender identity and sexuality in the face of the expectation of cisgender heteronormativity, and ultimately came to understand and embrace her identities. Freeman's journey through her guilt, pain, and her own fear of abandonment eventually lead to a place of acceptance of her sister and forgiveness of her parents. She came to this place in part by volunteering with a theater group for people with intellectual disabilities called Sol Express where she was connected with people like Martha and realized how complex and competent a person she really was.

Ultimately, A World Without Martha: A Memoir of Sisters, Disability, and Difference is a story about families, and about the complicated relationships between siblings. As I read the book, I couldn't help but to think about my own relationships with my brothers and sister who have strengths and flaws just as I do. This book captures the deep pain of institutionalization for both the child in the institution, and the siblings of that child. Sixty years after Martha's birth, Freeman's story leaves the reader wondering how siblings navigate their relationships with one another now that children with disabilities are typically kept with the family. We get a glimpse of what Freeman's relationship with Martha might have been when she shares seeing a documentary made by Kelly O'Brien called Softening, which tells O'Brien's story of learning to live with and love her child, Teddy, who has cerebral palsy. O'Brien also made the film short My Brother Teddy, available as a New York Times Op-Doc. My Brother Teddy captures the love between O'Brien's son Teddy and his 6-year-old sister, Emma, who absolutely adores him. Emma describes how she loves to play with Teddy, help him take a bath, and make him laugh. She also lists the things that Teddy likes, including "snow falling, the smell of oranges, swimming in warm water, drums and guitars, nursery school, windy days, having friends over for dinner, holding hands." As I watched this poignant video, I thought about Freeman and Martha, and what their relationship could have been. I reviewed the family photos in A World Without Martha: A Memoir of Sisters, Disability, and Difference, and I could see glimpses of the connection and togetherness that Freeman craved. Freeman's memoir portrays the deep pain and loss that her family experienced due to institutionalization, but also captures the abiding love of siblings, the complexity of family dynamics, the power of forgiveness, and the vision of a more loving and accepting world.

References

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