Mothers with disabilities
When first looking at Mary Ashberry all you see is her disability. Her skin, face, and self are distant from her naked skull hanging within one of the many cases in the Mutter Museum. In order to remotely understand who Mary is you must squat on the floor and squint your eyes to view her description placedat her feet in small print; her description describes her as a “dwarf” prostitute who died while trying to birth her child although her size was not conducive to motherhood, both culturally and physically. Her child’s skull lies at her feet. Within this description Mary is never deemed a mother. The Mutter museum presents her with two different titles instead, dwarf and prostitute. Mary and her baby’s remains are not respectively shown as a mother and her lost baby but instead her baby’s skull is used as a tool to further reinforce Mary’s non-normative size. Her motherhood and her struggle to be a mother is not only dissected from her body and death, but it is hidden behind the medical terminology used and paired with the word prostitute which causes the viewer to distance Mary even further from the culturally accepted view of a mother and closer to the culturally accepted view of a freak.
Disabled and mother are two labels that are rarely used to describe one woman. In the United States, society views a person’s disability before they view themas an individual with a life and wants. This therefore influences the idea that a person with a disability is unable to raise a child, Samantha Walsh, a disabled woman who feels that she is expected to never become a mother due to her disabilities, expands on this by stating, “According to this cultural understanding, disability is something that inhibits my personhood, so much so that I cannot model what it is to be a person to another person” (84). It is believed that a woman with disabilities would not become a mother because she would not only be unable to fully care for a child but also because she would be unable to function in way that society deems motherly. They are not only highly discouraged by the medical field in fear that they may pass disabled traits onto their children but also by society as whole in fear that woman with disabilities may some how damage society in raising a child who’s mother may be unable to fulfill all the roles a woman in society should fill. Walsh highlights the problems with the suppression of a disabled woman’s choice to be a mother:
“Motherhood is understood culturally as the central performative act of being a woman and reaffirming life. For me there is something disturbing about the inference that I cannot mother. I feel it is an inference that shakes the foundation of my personhood. As a disabled woman I want disability to be treated not as something that occasionally disturbs the normative order of things, but rather, as something that is taken up as a valid way of being in the world.” (84)
The idea that being disabled means that a woman should not be a mother is rooted in the idea that a disabled woman can meet societal requirements for a mother. As Walsh points out being disabled is not viewed as a “valid way of being in the world.” Instead, being disabled is viewed as a mistake as if disabled persons are not humans but broken machines within a factory.
Mothers with disabilities are no different than mothers without disabilities. No family or mother is perfect. Claiming that mothers with disabilities are unfit is not only false in many cases, but also, prolongs discrimination against persons with disabilities. Autism-rights activist, Ari Ne'eman, states "Parents with disabilities continue to be the only distinct community that has to fight to retain — and sometimes gain — custody of their own children”. Mothers with disabilities are as capable as non-disabled mothers to provide loving and supportive homes.
Many mothers with disabilities are conscious of how their disability may affect their children. As the disability community strengthens there are more outlets of support for parents with disabilities. These support systems include websites and blogs that include articles written by parents with disabilities and how they manage their lives and society’s view of them. Rhoda Olkin shared her story of being a mother with a physical disability. Being a mother with a physical disability Olkin must ask her children for help when doing small tasks. In her work, Olkin depicts how conscious she must be of every tasks she asks her children to help her with:
“ With each job they take on in part or in full, I am aware of the need for me, as a parent with a disability, to take on the extra task of asking myself a series of questions to ensure that the job does not cross some fine line between participation and parentification. Thus it is I who incurs the extra burden, namely the need to take a defensive stance against accusations of parentification, and to prevent whenever possible my children from sharing in the stigma of disability”.
Olkin does this not only because she worries about how society views her as a parent but also because she wants the best for her children. She does not deny that parentification is a real fear but she does realize that society believes that each task she asks her children to complete is a reminder that she is not a “good mother”, “I am aware of other people watching us, and I know that some might think it is inappropriate for my daughter to get my crutches for me, that they think this task is just another burden placed on the children of parents with disabilities”. Although Olkin must ask her children to help with tasks that a normative mother may do on her own, she makes sure to provide support to her children and teach them like any other mother would. What makes Olkin need for her children to help her with her crutches more of a burden than a non-disabled parents need for a child to take out the trash. Chores in a normative household are widely accepted yet, helping a parent who may be less mobile is considered damaging. Olkin addresses how parents who are disabled are not the only ones who ask for help from their children, “ The need for assistance with the task may be prompted by other factors such as poverty, unemployment, social class, or number of children in the household”. Olkin may provide her child with a non-normative family but most families are non-normative for various reasons. Deeming a mother with a disability is unfit because they do not fit the mold of a perfect mother means that all mothers who are not “good mothers” fully must be deemed unfit as well.
Children with disabled mothers benefit from their connection with the disability community. Due to society’s disapproving view of mothers with disabilities and the lack of support mothers receive from the government to aide in caregiving, mothers with disabilities must be creative in how they take care of tasks. This creativity does not just include physical tasks but also interactions with the world out side of the home, Kristin Lindgren depicts this when she states, “…disability puts pressure on the notion of motherhood, requiring mothers to negotiate not only physical tasks but also cultural expectations about what mothers do” (93). Mother’s with disabilities require aide from others that allows their children to be comfortable with interdependence. People will experience a disability in their lifetime. Being raised by a person with a disability allows one “to see and embrace the creativity and flexibility that disability demands” (Lindgren 96). All parents are people meaning they all will age and experience disability. Having a mother with a disability increases a child’s acceptance of themselves. Kristin Lingren talks about her efforts to further her sons’ self-acceptance as well as acceptance of others utilizing her experience and her ties to the disability community culture that she introduces them to:
“ I like to think that when my sons someday encounter changes related to disability or aging in their own bodies, these changes won’t seem as scary and foreign as they initially did to me. But if they are more knowledgeable about and accepting of disability, it will be not only because their mother has a chronic illness but also because of their exposure to the larger world of disability arts and culture” (96).
Mother’s with disabilities benefit their children in ways that normative mothers may struggle to do. They must come to terms with their inability to meet society’s standards and therefore teach their children that being non-normative does not mean that one is incapable of love or life.
America has painted time and time again what a perfectmother is. This mother is all knowing and the epitome of strength. A mother has been deemed for decades to be the center of a “happy family”. Many mothers with disabilities find it difficult to accept that they cannot fit this role perfectly. There may be times where it is difficult for them to function, when they must be given care, or when they are just exhausted due to their disabilities this leads many mothers to feel lesser, Kristin comments on her feelings of not being able to be the “perfect” mother when she states, “…choosing to become a disabled mom required, for me, a painful rethinking of what it meant to be a mother” (92). Mothers with disabilities must utilize interdependence in order to balance their need for their children to aide them and the children’s need for care. Rethinking motherhood, as Kristin states, means realizing that being a mother doesnot mean you must be completely independent of your children. Most messages given through media and texts depict what the child learns from the parent while many parents, disabled and non-disabled, feel they have learned from their child as well. Rose Siggins, a physically disabled actress and mother, mentions this within an interview about her life as a disabled woman, “I don’t need my kids to live a normal life but they do make life a lot easier”. Rose does not depend on her children but she does receive benefits from them like all parents do whether its someone to take out the trash, a different way of thinking, or an extra hand to reach something on a taller shelf. A family requires interdependence to move as a unit. Mothers with disabilities utilize this interdependence in a way that may appear non-normative but is relatively common within any family.
Although mothers with disabilities are non-normative they can provide loving homes that enrich a child’s love for themselves and others. Discouraging mothers who have disabilities from having families of their own perpetuates the removal of personhood and freedom from people with disabilities. Mothers are unable fit the mold of what a “good mother” is whether it is because of their class, job, income, health, etc. Having a disability does not mean that woman can never be a mom. Rose Siggins depicts this when describing how she would address her disability with her children’s classmates:
“I went with each one of them on the first dayof school I went with them and asked the teacher can I talk to your students and when I went I would tell them, “ Hi my name is rose and I’m Luke’s mom. I don’t look like a regular mom but I’m going to tell you that I am because I know how to make mac and cheese, hot dogs, and I know how to play”.