Skip to content

Susie Matsuda and Ellen Matsuda

Susie Matsuda and Ellen Matsuda were daughter and mother in the Matsuda family of Pasadena, California. Ellen’s disability-rights advocacy shaped Susie’s choice to practice disability-competent medicine, while Susie’s caregiving role in the family placed considerable pressure on her.

Overview

Ellen, known professionally as “the Dragon,” built her advocacy career around the conviction that her disabled sister Heather and other disabled people deserved dignity and access. Susie, born August 12, 1977, was her eldest child and became a gentle caregiver to her younger siblings. She pursued medicine as a form of disability justice. Susie wanted Ellen to be proud of her but feared that her quieter care could not measure up to her mother’s public ferocity. Ellen was proud of Susie yet did not always see the cost of the responsibilities her daughter carried.

Ellen taught Susie to use the family’s resources and professional knowledge to protect others, to challenge “that’s just how things are,” and to treat medical practice as justice work. Susie also absorbed a harder lesson from the household’s reliance on her: that her own needs mattered less, asking for help could feel like weakness, and following Ellen’s example might leave little room for a path of her own.

Origins

Susie was born in August 1977, Ellen’s first child, when Ellen was in her mid-twenties and establishing her disability-services career. In the Matsuda household, disability justice was part of daily life. Ellen’s work protecting residents drew on the place her sister Heather held in the family, and the Moore family’s multigenerational progressive values shaped the children’s upbringing.

Ellen’s parenting drew on her parents Bill and Dorothy’s decision to center Heather’s dignity rather than institutionalize her. She taught her children that disabled people were fully human, accommodation was a form of love, and harmful systems should be challenged. She also taught them to use advantages such as Moore family wealth, their parents’ professional standing, and the ability to pass as White in some contexts to help others.

Ellen’s demanding work and the needs of four children left her exhausted, particularly through Cody’s 1995 suicide attempt and Pattie’s 1998 pregnancy. As the eldest child, Susie became a regular source of support: caring for younger siblings, helping them communicate with their parents, and taking responsibility during crises. The family loved her, but its reliance on her also gave her caregiving and emotional work beyond what a child should have had to carry.

Dynamics and Communication

Susie respected Ellen and was also intimidated by her. Ellen was direct and willing to confront institutions; her “Dragon” reputation made her an imposing advocate. Ellen’s pride in Susie did not always make her aware of how much effort Susie spent appearing capable. Both women tended to put other people’s needs ahead of their own.

Susie spoke softly and chose words carefully. She asked questions to understand, explained things patiently as Greg had taught her, and often comforted Joey. With Ellen, she also tried to demonstrate that she was responsible and capable enough to carry the Moore family legacy. Her desire to make her mother proud made it harder to reveal when she was frightened or overwhelmed.

Ellen told Susie, “You got into STANFORD. Pre-med. I’m so proud of you.” Yet Susie compared her gentleness with the Dragon’s force. Ellen also reassured her about Stanford with the words “Oh, everyone’s nervous at first! But you’ll make friends so quickly. You’re so good with people”; she saw Susie’s successful social presentation without seeing the effort and exhaustion behind it.

After Cody’s suicide attempt in spring 1995, Susie raised the possibility of deferring Stanford because the family needed her. Greg pressed her to examine what she feared: “Are you staying because you think it’s what’s best for the family? Or are you staying because you’re terrified of what will happen if you’re not here to hold everyone together?” Ellen supported Greg’s conclusion that Susie should go, though Greg recognized the depth of her fear sooner than Ellen did.

Family and Cultural Context

Susie and Ellen’s relationship was shaped by Ellen’s demanding advocacy career, the Matsuda household’s neurodivergent dynamics, and the gendered expectation that an oldest daughter would help hold the family together. Susie’s mixed Japanese American and White heritage joined Greg’s family traditions with the Moore family’s progressive White activism rather than reducing her obligations to either side alone.

Susie took on caretaking so consistently that its work became easy to overlook. She read rooms, anticipated needs, helped family members understand one another, and carried emotional responsibilities when her parents could not. Ellen’s advocacy sometimes kept her working until nine or ten at night. Susie filled the gap as the family’s “good daughter,” “responsible one,” and quiet anchor.

The gendered expectation that an eldest daughter would nurture others reinforced Susie’s role across the Moore and Matsuda sides of the family. Ellen’s professional work challenged the exploitation of vulnerable people, yet her household came to depend on Susie’s unpaid care. This was not Ellen’s intention. Her long work hours, Greg’s withdrawals during sensory overwhelm, Cody’s illness, and Pattie’s school conflicts all increased the need for help. The family’s progressive values did not prevent Susie’s sacrifice from being treated as a virtue while its cost to her remained less visible.

Susie was autistic but remained undiagnosed in 1995; she received a formal diagnosis in the 2000s. Her emotional intelligence, pattern recognition in family dynamics, and ability to help siblings with different communication needs were strengths whose cost was obscured by her competence. All four Matsuda children and their father were autistic, with different paths to recognition. In Susie’s case, the child who held others together was rarely seen as someone who might also need support.

Shared History and Milestones

Childhood and Adolescence, 1977–1995

Throughout Susie’s childhood, Ellen modeled disability-rights advocacy. Susie saw her mother defend residents’ dignity, pursue Cody’s school accommodations, and challenge discipline imposed on Pattie after she defended Cody. She learned to treat intelligence as a tool for justice rather than status and to use the family’s resources to protect others.

Ellen also taught Susie about Heather, her youngest sister, born in 1968 with cerebral palsy and epilepsy and also autistic. Heather’s life showed Susie what sustained support could enable. Ellen saw her sister’s humanity in the residents she protected. Susie understood the family’s disability-rights work to have grown from Dorothy and Bill Moore’s decision not to institutionalize Heather and to include her fully in family life.

Childhood also established Susie as “the responsible one.” She helped Cody with homework when he was exhausted, mediated after Pattie’s fights, and comforted Joey when he was frightened. Ellen relied on her to help care for the household and siblings while pursuing advocacy at work and at school. Although that reliance came from love and practical need, it taught Susie to treat her own needs as less urgent.

Spring 1995: Cody’s Suicide Attempt

When sixteen-year-old Cody attempted suicide with his prescribed fluoxetine, Susie was seventeen and Joey was seven. Susie was home during the emergency or arrived shortly afterward; she held Joey and tried to keep him calm, even as she feared Cody would die and felt helpless.

Ellen screamed when she found Cody. Susie remembered the sound and the sight of her mother, normally the family’s formidable advocate, terrified for her son. Watching Ellen become frightened and vulnerable unsettled Susie’s belief that her mother could always protect them. Susie felt that someone had to remain capable if Ellen could not.

Doctors had dismissed Cody’s disabling fatigue for years. Ellen had sought accommodations and tried to make clinicians listen, yet her expertise had not protected him from the dismissal of his suicidal statement or the attempt that followed. For Susie, seeing the limits of even Ellen’s advocacy was devastating. It strengthened her determination to become a physician who listened to patients, while teaching her that effort alone could not guarantee a person’s safety.

Afterward, Ellen coordinated Cody’s medical care, secured access to augmentative and alternative communication, and arranged ASL learning for the family. She also responded to Pattie’s anger, Joey’s confusion, and Greg’s grief. Susie helped where she could but felt inadequate beside her mother’s apparent strength.

Spring and Summer 1995: Stanford Deferral Discussion

After Cody’s attempt, Susie approached Greg about deferring Stanford rather than raising the idea first with Ellen. Greg’s questions brought out fear that had begun months before Cody’s crisis. Susie had struggled to admit that fear while the family celebrated her admission to Ellen’s alma mater. Caring for the family gave her an acceptable reason to stay; her concern for Cody was real, as was her relief at the thought of postponing college.

Greg asked Susie to consider who she would be without daily responsibility for her siblings. He told her, “You need to go. You need to learn who you are when you’re not everyone’s caretaker.” Ellen later supported his conclusion. She saw Susie as capable and ready, while missing how much effort lay behind that appearance and how much her daughter needed permission to pursue a life beyond caretaking.

Fall 1995: Leaving for Stanford

When Susie left for Stanford that fall, Ellen felt proud and sad. Susie was following her to Stanford and pursuing pre-medical study, with Aunt Annie Moore’s disability-competent practice as another example. Ellen saw the fourth generation of the Moore family’s justice commitments taking shape. Susie also wondered whether medicine was a choice she had made for herself or one she felt obliged to make as a Moore.

Ellen’s expressed pride was genuine, but her reassurance that Susie would make friends did not address the specific fears Susie struggled to explain: sharing a room, using communal bathrooms, and facing continual social demands without a reliable place to recover. Cody’s recovery, Pattie’s school conflicts, and Joey’s distress about Susie leaving also occupied Ellen’s attention. Susie had no diagnostic framework yet for the sensory and social strain she anticipated.

Stanford Years, 1995–1998

During Susie’s Stanford years, Ellen supported her through weekly telephone calls that became daily when Susie’s homesickness intensified. They shared news of the siblings and discussed her academic work. Ellen was proud of Susie’s grades, MCAT scores, and commitment to becoming a physician. Susie’s success obscured her exhaustion from masking, social demands, and guilt about being away from the family.

When Pattie became pregnant at fifteen in spring 1998, Ellen defended her against Deborah Hayes’s use of her ADHD as supposed “proof” that she was unfit to parent. Susie offered Pattie support as an older sister during the summer, including care during her nausea and space to talk without the parent-child dynamic of Ellen’s help. Susie returned to Stanford for her senior year on August 28, when Pattie was roughly twenty-two to twenty-three weeks pregnant. Leaving her sister while the family was under strain renewed Susie’s guilt about pursuing her own education.

Medical Career

As Susie progressed through medical school and residency, Ellen remained proud that her daughter was using medical expertise to challenge ableism and listen to patients like Cody, whose symptoms had been dismissed. Susie sought to serve chronically ill people and others whose needs were marginalized. Her work carried the family commitment to disability justice into medicine. Her later medical expertise supported family advocacy, including Joey’s cases and Cody’s work, and offered Ellen someone within the family with whom she could discuss medical questions arising from her work with residents.

Susie continued to contend with exhaustion from caregiving and medical training. Ellen’s pride did not always show her how heavily the expectation of constant capability weighed on her daughter.

Public and Private Life

Within disability-services circles and the Moore family, Ellen’s work and Susie’s medical career represented successive generations of disability-rights practice. Ellen’s advocacy grew from Heather’s place in the family; Susie followed Aunt Annie’s example by bringing those values into patient care. People who knew Ellen as “the Dragon” also knew Susie as her daughter.

Ellen’s pride in Susie’s choice of medicine was visible in her professional circles. She may have described her daughter’s path in family terms: “My daughter’s at Stanford, pre-med. She’s going to be a disability-competent doctor. She watched her brother nearly die because the medical system failed him, and she’s determined to be better.” Her pride joined Susie’s medical ambition to Cody’s experience of dismissal.

At home, Ellen’s pride and love coexisted with a reliance on Susie that created pressure. Susie could help with siblings and manage crises without drawing the same attention as Pattie’s school conflicts or Cody’s intensive support needs. Being trusted validated her competence while also encouraging the expectation that she would remain capable and rarely need help herself.

Emotional Experience

Susie loved and respected Ellen and wanted her approval. Ellen had taught her to use privilege in service of justice, challenge harmful systems, and treat disability as human variation deserving dignity. Susie carried those values into medicine. She nevertheless compared her quiet, nurturing way of protecting people with Ellen’s public confrontations and felt inadequate, even though both forms of care had value.

Susie worried that she might not become a good enough doctor, manage medical training, withstand further caregiving, or carry the family legacy. Ellen did not intend to impose those fears. For Susie, however, the force of her mother’s example made the possibility of disappointing her feel overwhelming.

Ellen was proud of Susie’s intelligence, compassion, and commitment to disability-competent medicine. Heather had shaped Ellen’s career, and Cody’s crisis had exposed the limits of her ability to protect her own child. Susie’s determination to become a physician who believed patients gave Ellen hope and a sense that the family could answer some of the failures Cody had encountered. Ellen did not always recognize that her faith in Susie could also feel like a demand to succeed without faltering.

Ellen was grateful for Susie’s help during Cody’s crisis, including her care for Joey and Pattie while Ellen attended to Cody. That reliability became a pattern Ellen relied on without always seeing its emotional cost to Susie.

Health and Access

Ellen’s disability-services expertise shaped her support for all four children. She pursued accommodations for Cody, secured his access to AAC after the 1995 attempt, and helped the family learn ASL. She advocated for Pattie’s ADHD accommodations and challenged excessive discipline, although Pattie’s autism remained unrecognized until adulthood. She recognized Joey’s autistic traits before he identified himself as autistic; he did not seek formal diagnosis.

In Susie, Ellen saw a high-achieving daughter who appeared to manage school, friendships, and household responsibilities without the same level of intervention. Susie’s masking concealed the effort behind that appearance. Ellen’s reassurance, “You’re so good with people,” reflected genuine belief, but she did not see how social performance exhausted Susie or how threatening the loss of privacy and routine at Stanford felt. Susie needed support different from what Ellen recognized.

Ellen often carried advocacy work at personal cost, sometimes working late and neglecting rest. Susie learned the value of sacrifice from that example, but also came to confuse effective care with self-neglect. The belief that a strong person should keep helping without asking for help intensified her own burnout.

Changes After the 1995 Crisis

Cody’s Suicide Attempt

Ellen’s scream and fear revealed a vulnerability Susie had rarely seen. It made her mother more recognizably human and also frightened Susie, who wondered who could hold the family together if Ellen could not. Susie cared for Joey while Ellen dealt with the medical emergency, concealing much of her own terror.

Ellen understood the attempt as a failure she had not prevented despite her expertise. Susie also felt guilt for not recognizing how desperate Cody had become. Their different forms of guilt accompanied a shared determination to prevent other patients from being dismissed as he had been.

Greg’s Intervention

Greg’s questions about deferring Stanford exposed fear beneath Susie’s stated concern for the family. Ellen supported his insistence that Susie go, but she had not recognized the full extent of Susie’s sensory fears or her uncertainty about life outside the caregiver role.

Separation for Stanford

Susie’s departure ended her daily availability to help siblings and interpret their needs to their parents. Ellen had to let the household function without depending on her eldest daughter as a standing backup. Susie began the difficult work of discovering who she was outside that role, encouraged by Ellen even where her mother did not fully understand its cost.

Pattie’s Pregnancy

During Pattie’s pregnancy, Ellen defended her against Deborah Hayes’s attacks, coordinated medical care, and provided reminders and practical structure while Pattie was off ADHD medication. Susie, home for the summer, saw Ellen combine gentle daily care with forceful advocacy. The period reinforced both Ellen’s teaching about family loyalty and Susie’s concern that her mother would manage a crisis through sheer effort instead of asking for help.

Lasting Influence

Ellen taught Susie to use social and professional advantages to challenge injustice and protect disabled people’s dignity. Susie’s disability-competent medical practice, commitment to believing patients, and care for people whose symptoms had been dismissed carried those values into her own profession.

The relationship also left Susie with the belief that asking for help showed weakness and that love required unlimited sacrifice. Those beliefs made burnout more likely. Through college and adulthood, she learned to set limits and accept support without abandoning the family’s commitment to justice.

Ellen took pride in Susie’s work against medical ableism, including her training of younger doctors, medical support for Joey’s cases, and contribution to Cody’s advocacy. These were concrete continuations of the family’s work. Their relationship also required Ellen to recognize Susie as a person who could struggle and need care, rather than only as a capable successor.

Susie’s adult autism diagnosis helped her understand her needs for quiet, predictability, and accommodation. She worked on saying no to some caregiving demands, asking for help, and accepting that her quieter way of protecting people was not a lesser version of Ellen’s advocacy. Ellen’s continued support mattered most when it made room for that vulnerability alongside her pride in Susie’s capability.

Relationships Family Relationships Matsuda Family