Care Taking and Disability
Friday, June 1, 2018
2pm - 2:45pm
Supporting the Development of Independent Autistic Children:
The Multidimensional Role of Latina Mothers
Ochoa, L.; Guardado, K.; De los Santos, T.; Arriaga, I; Hayes-Bautista, D.E.
BACKGROUND: Wolfensberger (1977) described that advocacy could present in the form of either a group of people or an individual acting and speaking in favor of others’ preferences, strengths, and needs. Previous research has shown that mothers of autistic children, in particular, report adopting the role of advocate for their child to acquire services and additional support for their child (Iland, 2012). Most parents, despite demographics, perceive significant challenges acquiring these supports. However, Latino parents of autistic children perceive additional, unique challenges, such as language barriers and limited access, to obtain services for their children (Zuckerman, 2012). Limited research has examined the mechanisms Latina mothers, in particular, utilize to overcome these barriers.
OBJECTIVES: To elucidate the mechanisms Latina mothers utilize to advocate and provide equal services and opportunities for their autistic children given their desire to support them in the process of becoming self-sufficient adults in the future.
METHODS: IRB approval was obtained to interview 21 self-identified English and Spanish speaking Latinx parents of children with ASD and 3 key informants (community leaders). Criteria for study participation included residency in Los Angeles County, being of Latin American descent, of low SES, as defined by the U.S. Federal Poverty Guidelines, and a parent of a child between the ages of 2 and 10 years with a professional diagnosis of ASD. Key informants were eligible if they worked with low-income, Latino parents of autistic children. Focus groups and interviews were conducted utilizing open ended prompts to elicit discussion. Interviews and focus groups were audio recorded, transcribed verbatim, and independently coded for major conceptual models. Exploratory, qualitative analyses were conducted using a modified grounded theory approach. Six raters coded each transcript to ensure reliability. Data triangulation and methodology triangulation were employed to ensure validity and reliability of data interpretation.
RESULTS: The focus of these mothers is centered on creating independent/self-sufficient children. Given the challenges they perceive, mothers feel that their role extends to becoming a health, legal, and education advocate in order to provide their children with as many opportunities and resources as their non-Latino White counterparts. Based on the self-reporting of the mothers, these are the top 3 attributes they reported throughout the study: (1) Community Wealth in Latina mothers highlights the value of building a social network/community in surpassing barriers when seeking services for the child. The immigrant background of the mothers, also allows a (2) Global/Local approach towards applying knowledge, experience, and skills from their own national/cultural background to their local context/community. In doing so, they are practicing (3) Patient-Centered Care by modeling the relationship that the provider (physician) should have with the child (patient). This establishes a baseline of care and support that they later confer to the child.
CONCLUSION: In the absence of cultural competence of school and health administrators, mothers assume the role of health advocates, legal representatives, and personal instructors. The female empowerment of Latina mothers allows them to embrace this multidimensional role, in which they advocate for equal services and resources for their children with ASD. This type of proactive role from Latina mothers is essential for supporting their children with ASD to become independent, self-sufficient adults.
"Care Taking While Disabled"
Building from a conversation I recently had with the remarkable Cheryl Greene as a guest for her podcast, this presentation will examine the lies of ableism, directly interrogating the ways in which these lies contort and control caregiving spaces. Specifically, this work will spotlight and analyze the dynamic of “caretaking while disabled.” Situated at the crossroads of emic (insider) and etic (outsider) knowledge, this presentation will be primarily based on personal reflection to center the experiences of caretakers who are disabled. We know that ableism lies. Ableism tries to control the narrative of disability, attempting to dictate which bodies/minds are acceptable and which are not. We know this to be true, yet a more robust understanding that extends to caretaking space is needed. As such, unlike previous framings that center able-bodied actors and wantonly invoke the insidious pity/burden models, this work attempts to rigorously critique the narrow spaces (angel/victim) typically afforded caregivers - especially disabled caregivers - to offer up some critical vocabulary and think through possible alternatives. Although this work has broad potential application, for the current presentation, I will be reflecting on my own experiences; as such, I am interested in exploring the following: 1) cultural framings of caretaking (as a Sicilian-American daughter, my understanding of care is frequently at odds with Western main-stream narratives, which are often ableist, colonialist and eugenicist; 2) first-daughter positioning (many cultural expectations of first daughters constitute a specific narrative of care); and, 3) chronic illness (how do we honor each other’s needs when spoons are in short supply?). I identify as disabled but not Latinx. My hope is that, if this proposal is accepted, this conversation will touch on some common ground with other NCLD participants, illuminate areas of overlap, and generate potential for coalition building.