A. Family Profiles
1. Mike and Janice
Janice is mother and primary caregiver to Mike, 24, born with Down syndrome. Mike is third of four children having two elder sisters and a younger brother. Mike and his younger brother reside with Janice and Mike attends a day program full-time. Janice is no stranger to difficult times as over the years she has lost five of her seven siblings as well as her husband. Janice and Mike have support from friends and family, notably Janice’s older sister who lives nearby. Janice and Mike were interviewed together for 65 minutes. Mike speaks in one or two word utterances and has a pronounced memory for names.
2. Maria, Gary, Crystal, Carrie and Andrew
Maria and Gary, who have been married for 35 years, head their family of five. Support for daughter Crystal, aged 33, diagnosed with a developmental disability, OCD and schizophrenia, defines much of family life for Maria and Gary. Crystal has two siblings, Carrie, age 31 who lives with her husband Matthew and is expecting their first child, and Andrew, age 27 who lives on his own.
Crystal lives with her parents, and Maria has been full time caregiver for Crystal’s entire life. Gary is newly retired from a 40-year career in financial services and now more involved in Crystal’s daily support and routines. Carrie and Andrew were each interviewed one-on-one for 90 minutes while Maria, Gary and Crystal were interviewed together for two and one half hours. After the first hour of the group interview, Crystal had her lunch then left with Gary to be dropped at her day program. The interview continued one-on-one with Maria for 40 minutes until Gary returned and rejoined the interview for the final 30 minutes.
3. Donna, Martin, Susan and Joelle
Donna and Martin lead their reconstituted and adoptive family in support for Susan, age 20, who has a developmental disability. In addition, Susan’s sister Lisa, age 24, was labeled “gifted” when Lisa was in grade 7 and presented some distinct learning and social needs. Further, Lisa had sustained a brain injury four years earlier but had since resumed much of her former education and work pursuits. Donna and Martin have been married 29 years and adopted both Susan and Lisa as newborns. Three step sisters to Susan and Lisa, Joelle, age 37, Rhonda age 38 and Jamie age 43, from Martin’s first marriage, round out this family. Data from this family were collected in an interview lasting 130 minutes that included Donna, Martin, Susan, and Joelle.
4. Sandy and Dave
Dave, a middle-aged man with a cognitive disability, lives in a small town in a rental property owned by his mother Sandy. Dave and his older brother Robert are Sandy’s children from a previous marriage. Sandy married Chris when Dave was five and Robert was seven and Chris is the father figure with whom Dave and Robert identify. Sandy and Chris live on a farm a few kilometers from the town where Dave lives and Robert, his wife and two grown sons live on a neighboring farm. Sandy describes Dave as central in the life of her family. Dave lives with a roommate and has a full schedule of paid and volunteer work and is well known in town. Dave and Sandy each took part in one on one interviews; Sandy’s interview lasted fifty-three minutes while Dave’s total interview time was twenty-nine minutes. Sandy also took part in the second half of a ninety minute focus group interview that included caregivers from other families.
5. Allison, Jean and Barbara
Allison, a 31 year old woman diagnosed with Prader Willi Syndrome, lives on a farm with her parents Jean and Arthur. Allison has part time employment in a small town a few kilometers from her home. Allison’s siblings, Barbara, 26 and Mark, 22, live in a large urban centre an hour away from their parents’ farm and are central to Allison’s support. Jean, Barbara and Allison took part in a family member focus group lasting two hours. Barbara also took part in a 30 minute one-on-one interview.
6. Lindsay and Ruth
Ruth is a middle aged woman and the eldest of five siblings. Ruth and two of her sisters, Andrea and Gillian, have developmental disabilities. Ruth and Andrea live independently and are involved in supporting Gillian who has severe disabilities and lives in a group home. Ruth, Andrea and Gillian all receive considerable support from their sister Lindsay. Rounding out the sibling group is brother Kyle who has removed himself from support provision for his sisters with disabilities. Ruth and Lindsay took part in a family focus group lasting two and one half hours.
7. Geraldine and Henry
Geraldine, aged 80, along with caregivers from other families, took part in a ninety minute focus group interview where she discussed support she provides for her brother Henry, aged 71, who has a developmental disability. Henry moved to reside in a seniors home once his mother was no longer able to care for him. Henry, a man of few words, attends a day program and enjoys being part of social interactions. Henry took part in a one-on-one interview with a researcher which lasted 15 minutes.
B. Family Care Context Facilitation of Voice
Our samples provide evidence of parents and siblings representing and facilitating the voices of their sons/daughters/sisters/brothers with disabilities in ways that reflect intimate knowledge and skill at avoiding stress and conflict. For example, Janice, interviewed with her son Mike who has Down syndrome and limited verbal abilities, strikes a balance between facilitating, and yet not pushing, Mike to express himself. Janice uses gentle probes yet retreats when Mike says ‘no’ or withdraws. Janice specifically prompts Mike to share utterances resembling the names of people in Mike’s close family and social network. Janice pauses her prompts when Mike is stumped to come up with a particular name then gently rejoins Mike several minutes later when he remembers and is ready to share further names.
Intimate knowledge and skill at avoiding stress and conflict was evident in an interview that included Susan, who is 19 years old and has a developmental disability, along with her older half-sister Joelle and their parents Donna and Martin. Donna sets the stage for the family’s appreciation of Susan’s personality and style as she describes raising Susan relative to another daughter Lisa, who was identified in junior high school as gifted. Donna points out how a sense of crisis ensued for Lisa when anything was less than perfect. Comparatively, Donna notes that for Susan, the ups and downs of life are like “water off a duck’s back.” Playing out her straight forward, unruffled style, Susan shares some experiences including having established an important friendship: “We met in element, we met in middle school, grade 6 band class. She was being bullied a lot and I just, I didn’t see any, I didn’t see any problems with her as we, we became friends really quick.” Susan goes on to share her interests including her love of animals. Donna and Martin elaborate about Susan’s skills and interests with Donna pointing out: “Susan is exteam, extremely artistic” This prompts a series of questions from the researcher inviting Susan to describe the materials and colors she uses in her art work and perhaps show a sample or photograph of her work. Susan declines to do any of this in a direct and matter of fact way. Donna and Martin then provide brief details about the types of materials Susan uses in her art then wrap up the topic with Donna noting “She was, she’s always been, ah, very reluctant to show anything, even to us” and Martin echoing “Extremely reluctant to share”. In similar fashion, Susan is supported by her parents and half-sister as she leaves and rejoins the interview several times, asking occasional questions about what is being discussed.
In family member focus group settings, parents and siblings facilitate the voices of their family member with a disability by reinforcing ideas that are expressed and asking for ideas that are not expressed. For instance, Allison, who has Prader-Willi syndrome, expresses that she would like to live in a group home as well as with her family. Allison’s mother and sister endorse her view adding: “we always include her and I couldn’t’ imagine planning something without her.” In another family member focus group, Lindsay intentionally stops the flow of conversation to make space for her sister Ruth, who has a developmental disability, to share her ideas. With some prompts from Lindsay, Ruth expresses pride in maintaining her own apartment along with feelings of worry over financial matters.
C. Family Context Constraints on Voice
1. Voices Obscured by Established Care Identities
Voices of adults with disabilities can be obscured amidst discussions that include their caregiving family members. For example, family members in focus groups describe challenges of navigating educational, social, medical and financial needs for adults with disabilities and point out “You have to have people around them to know what’s good for them”. Lindsay, discusses being alternate guardian for Ruth, who is also a participant at the focus group, as well as for two other sisters with disabilities noting: “they can’t take care of themselves.” Illustrating how adults with disabilities may need others to be involved in setting priorities and making decisions, Sandy, in a focus group interview, and her son Dave who has a developmental disability in a private interview, each describe Dave’s abilities to live with a room-mate and manage many aspects of day to day life, including holding a job and preparing meals; yet Dave and Sandy are both clear that Dave relies on Sandy to do his food shopping in order to ensure he has a well-balanced diet. Not unlike Sandy, Carrie, whose sister Crystal is diagnosed with PDD, OCD and schizophrenia, describes her worry for Crystal’s safety saying “I’m very protective of her…I don’t trust the public. I don’t want her to take public transit …I worry that she’d get taken advantage of.”
Accepting that adults with disabilities need support in ways described by Lindsay and Sandy, two representatives from an agency supporting adults with disabilities add their caution about families failing to evolve their ideas of what their family member with a disability may be capable of doing and deciding. Instead, family members may attach a young “chronological age”: “It doesn’t matter that they’re legally eighteen. It’s very, very, shocking and hard for them (families) to understand and cope with that whole mentality that they’re legally an adult and can make their own decisions”. Indeed, many adults with disabilities have lived their entire lives in their parents’ homes and “under” their parents’ care resulting in entrenched roles for both care receiver and caregiver. Dave, a middle-aged man with a developmental disability, has a job and lives with a room-mate with whom he shares household responsibilities. Yet his mother Sandy conveys the workings of caregiver/care receiver identities as she notes that despite Dave’s competence and independence, Dave “will phone the minute that he has any kind of a problem.”