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RJ Whitaker

Robert “RJ” Whitaker Jr., known as RJ, was the youngest child of Annie Whitaker and Robbie Whitaker, born at Sinai Hospital in spring 2012, and the younger brother of identical twins Lindsay and Leslie. He was a deafblind Ashkenazi Jewish ASL and Protactile user who read braille and used a white cane.

Early Life and Family

RJ was born in 2012, five years after Lindsay and Leslie. His bilateral newborn hearing-screening referral led to diagnostic audiology and genetic testing over the following weeks. The results identified his USH1F condition and prompted testing that named Saul’s condition and distinguished Miri’s clinically similar Usher syndrome as arising from a different gene. His maternal grandparents both lived with congenital Deafness and progressive vision loss. He grew up in the Whitaker household in Mt. Washington, Baltimore, where ASL was used from infancy.

Annie and Robbie told RJ about his Usher syndrome and its likely progression in age-appropriate ways throughout childhood. He knew that his grandparents had lived with related sensory changes and that he could turn to them as his own vision narrowed.

RJ sometimes found the transition to Protactile frustrating. His grandparents’ example helped him understand his changing vision as something to work with, neither a catastrophe nor something to ignore.

Communication and Access

RJ acquired ASL as his first language from infancy. His signing drew on the different styles of Annie, Robbie, Saul, and Miri, who communicated with him regularly. His family began braille instruction around age four and orientation-and-mobility training around age five so that those skills would be established before his vision narrowed substantially. He began transitioning to Protactile at approximately ten and was fluent by eleven. He did not speak aloud; the family chose an ASL-first, nonoral approach and did not pursue cochlear implantation. As his vision narrowed, lipreading remained only minimally useful. He could still use close-range visual ASL with a partner positioned within his remaining central field when lighting and distance allowed, while Protactile became his primary conversational access. He read printed braille and used a refreshable braille display.

RJ was ambulatory and began using a white cane outdoors at approximately ten. His family adapted the home with tactile wayfinding, vibrating alerts, and accessible controls that he could use through his braille display.

Health and Disability

Main article: Usher Syndrome Reference

RJ had USH1F Usher syndrome caused by homozygosity for the family’s ‘’PCDH15’’ c.733C>T (p.Arg245Ter/R245X) variant, profound congenital Deafness, mild vestibular dysfunction, and progressive retinitis pigmentosa. Night blindness became apparent around age seven; he began avoiding evening outings, and the family shifted some activities earlier. As his peripheral vision narrowed through ages eight to ten, he turned his head more often to bring things into view. He was functionally deafblind by approximately twelve. His vestibular dysfunction contributed to delayed early motor milestones and lifelong balance adaptations, including care on stairs without rails and in unstable environments such as boats on choppy water. He received regular ophthalmologic and genetic follow-up through Johns Hopkins.

Cultural Identity and Community

RJ grew up in an Ashkenazi Jewish, Reform-cultural household that observed Shabbat, the High Holidays, and Jewish coming-of-age traditions. He attended Hebrew school and accompanied his family to Jewish Deaf Society of Baltimore events from infancy, growing up among Deaf Jewish adults beyond his relatives. He understood himself as Deaf and deafblind as well as Jewish. At thirteen, his bar mitzvah was conducted in ASL and Protactile with voicing interpretation.

Family and Core Relationships

Main article: Annie Whitaker and RJ Whitaker

Annie and Robbie Whitaker

Annie and Robbie were RJ’s parents. Annie communicated with him in ASL and Protactile, coordinated his medical and educational access, and tried to give him room for ordinary trial and error rather than intervening at every difficulty. Robbie learned tactile communication as RJ’s access needs changed. His accessible-residential-design work shaped adaptations to the family home.

Lindsay and Leslie Whitaker

Lindsay and Leslie were RJ’s older sisters. Both had used ASL since childhood and learned tactile communication as their brother’s vision changed. They gave him a sibling perspective on family life, apart from his parents’ caregiving roles.

Saul and Miri Rosen

Saul and Miri were RJ’s maternal grandparents. Their experience of Deafness and progressive vision loss gave RJ close family members who already used disability-specific access practices. Saul taught him signed mischief from infancy, and Miri baked with him using Protactile communication. Both used and deepened their Protactile practice with RJ as his vision changed, preserving direct conversations across the generations.

Later Life

When Annie suffered a hemorrhagic stroke in 2033, RJ was about twenty-one. Her ICU stay and rehabilitation temporarily interrupted the Protactile conversations that had long been part of their daily life. Robbie, the twins, Saul, and Miri supported him while Annie recovered. As she resumed signing, he adjusted to her slower pace and changed movement without treating her as less his mother.

Saul and Miri died in October 2044, when RJ was thirty-two. At their joint memorial, he gave a eulogy in Protactile with voicing interpretation, recalling Saul’s signed mischief, Miri’s baking, and the ways both had stayed in direct communication with him. He signed: “They taught me how to be here. I will teach my children how to be here. That is what they gave us.”

Physical Characteristics

RJ had dark hair, olive skin, and dark-brown eyes like Saul’s.

Characters Supporting Characters Living Characters Jewish Characters Ashkenazi Characters Disabled Characters Deaf Characters DeafBlind Characters ASL Users Protactile Users Whitaker Family