Abstract
In this article, I describe the process by which I internalized disability as a construct of my identity, as a result of my son being diagnosed with cerebral palsy. This process was focused on the skillsets I needed to develop to navigate structures associated with disability on behalf of my son. In doing so, an identity focused on negotiating/maintaining the borders between my own perspective as an able-bodied individual and the needs of my disabled son emerged.
Five years ago, my son was diagnosed with a form of cerebral palsy. I vividly remember sitting in a doctor’s office while a neurologist explained that his brain damage was extensive, affecting three-quarters of my son’s brain, resulting in both physical and cognitive delays. My partner asked a lot of questions, but I sat in stunned silence having difficulty processing the information I had just received. These first few moments were among the few where a doctor sat in front of us attempting to explain what brain damage means, and how it occurs and how it might impact our child, but I was too stunned to hear the information.
The next few weeks were filled with even more uncertainty as we attempted to figure out who we needed to be as parents to care for our precious child. We mourned the loss of predictability – of the confidence in what we were doing as parents. Erikson’s (Citation1963) formative model of identity development includes a dimension where an individual has an unconscious sense of the timeline he/she will travel through. We had that prior to my son being born. We lost it when he was diagnosed.
Quickly, my partner and I realized that the only sense of loss was one that we were feeling. Our son’s life did not change, he was who he had always been. Ours, however, had changed significantly, but we did not want to let our process of understanding and internalizing disability as a component of his identity impact him negatively. We realized that we needed to stop mourning the loss of predictability, and start charting new paths.
Borrowing from Gloria Anzaldúa’s (Citation2012) work ‘Borderlands: The New Mestiza = La Frontera’, parents of children with disabilities straddle invisible borders between abled and disabled. These invisible borders are emotional and spiritual, and call for the creation of a third consciousness, focused on the creation of a new unique identity from the need to straddle the border. Anzaldúa describes the borderland as an ‘open wound’ and an ‘unwelcome homeland’, which can aptly describe the contradictory emotions associated with the early stages of parenting a child with a disability. The border came unexpected through a diagnosis – and now that border would define our lives moving forward.
As my son got older, and he fell further and further behind the neurotypical developmental curve, disability became a (not the) defining characteristic of our family and a significant component of our individual and collective identity as parents. From structuralized discrimination demonstrated through the lack of available childcare for children with disabilities, to microaggressions associated with doctors’ and therapists’ offices not being designed with accessibility in mind, we straddled the world between abled and disabled and did our best to take care of our son.
When my son was diagnosed, a number of colleagues and acquaintances provided us with the platitudes of ‘special children only go to special parents’, which was simply infuriating and reaffirmed a sense of isolation that we were somehow ‘set apart’ from the start and therefore different than other parents. I am not a special parent because of my son’s disability. I am a good father to all of my children. Being a father is central to my identity, and therefore my life choices are centered on who I need to be in order to be the best father I can be to my children. Being a good father, in this case, meant not only doing what I did for my other children, but also developing competencies to ensure I could be what he needed me to be – an advocate, a bully when needed and an expert in everything about his disability.
We became fluent in medical terminology in an effort to develop a level of cultural capital to communicate well with our team of doctors. We developed the self-efficacy associated with self-advocacy and knowing which battles to fight and how to fight them. We began to understand the challenges we would face as parents, both in the short term and in the long term, and started the gentle process of struggling with them to determine sustainable structures and plans.
Who do I need to be?
Parental identity has long been defined as a reflexive process. Galinsky (Citation1987) described it as a process where child development creates the need for new parenting skills, thus resulting in parents constantly evolving to meet the needs of their evolving child. Fracasso (Citation2017) describes the period of adolescence as one where parents figure out how to balance the child’s need for independence with their own need for connectedness – another concurrent reflexive process that involves stimulus/response between child and parent.
But neither one of those models accurately reflects my identity development. My son is very much the same child he was when he was born, leaving little room for reflexive growth. He is slightly more independent, but still 100% reliant on his parents for self-care-related needs. As it stands right now, it appears as if he has no higher order needs resulting in me needing to develop new parenting skills. However, I have developed significantly as a parent, not as a result of my son’s development, but rather from a reflexive process of attempting to manage the borders between disability and ability. We have failed over and over again, but each of those failures has taught us something new about who we need to be as parents to best care for our son.
The metaphorical borders defined by Anzaldúa have become practical borders that we navigate on a daily basis between home and work. Attempting to balance fulfilling careers with the time demands associated with therapy appointments, lack of reliable childcare and unpredictable health concerns has resulted in a reflexive shift in how we manage work/life conflict. The borders between work and home need to be flexible and permeable in order for us to effectively care for our son, leading to career changes. Corporate daycare systems are not designed for children with disabilities, and public school only runs nine months out of the year, which led us to relocating to be closer to family.
Managing the border
The challenges associated with parenting children with disabilities largely goes unnoticed, despite one out of every six children having some kind of developmental disability, ranging from attention deficit hyperactivity disorder to cerebral palsy to other developmental disorders. Parents of children with disabilities (predominantly mothers) have lower employment rates due to the lack of affordable and adequate childcare. Caregiving demands have been defined as the most common reason for unemployment by mothers of adults with disabilities. The unpredictability associated with medically fragile children leads to higher levels of work stress for parents of children with because parents are physically at work, but are always emotionally on call to pick up their child from school.
Indeed, my view of disability is limited by my own lived experience. I cannot begin to grasp the full depth of the identity my son is going to develop as a disabled person living in an ableist world. However, I echo Ryan and Runswick-Cole (Citation2008) who say that parents of children with disabilities cannot simply be defined as allies when we ourselves experience marginalization and disablism. We are more than allies because our child’s success depends on our ability to be fluent in medical terminology, educational law, insurance policies and procedures, among other things. For better or for worse, our failures are directly tied to the developmental ceiling for our children.
Parents of children with disabilities should be recognized as border-crossers and gatekeepers to their child’s welfare. Therefore, improving the lives of children with disabilities involves strengthening and empowering parents to effectively manage borders. Furthermore, the process of creation and maintenance of these borders rarely includes the input of parents. For example, meetings to discuss Individualized Educational Plans are scheduled only between the hours of 08:00 and 17:00, without any consideration for parents with little to no flexibility in their work schedules. The success of our children is based on our ability to navigate a system created by people who rarely have practical experience with parenting in our world.
As my partner and I learned quickly, there is no ‘how to’ associated with raising a child with disabilities, but perhaps there should be – and that ‘how to’ should be developed in conjunction with parents and caregivers in an effort to create meaningful systems and borders that are permeable, flexible and easily navigated. Enhancing the capacity of parents to effectively both navigate and influence borders in service of their children can directly impact the developmental trajectory of children with disabilities.
Parents of children with disabilities are not a homogeneous group. Identity development of parents of children with disabilities, therefore, should not be looked at from a linear, homogeneous lens. The level to which a person identifies parenting as a key role in their life will directly impact the manner in which they navigate the borders associated with parenting a child with a disability. Preconceived ideas regarding disability will directly impact the manner in which a parent takes on the challenges and opportunities associated with children with disabilities. Educational level, socioeconomic status, race and ethnicity all play a role in how well a parent of a child with a disability is effectively able to navigate the boundaries associated with raising a child with disabilities.
A new form of identity
Fundamentally, there needs to be a shift in how we conceptualize the role (and resulting responsibilities) of a parent of a child with disabilities. Instead of simply focusing on the day-to-day tasks associated with the care and development of children with disabilities, more focus should be given to the process by which parents actualize disability as a component of their identity, and develop the necessary skills associated with being an able-bodied person navigating systems associated with disability.
My partner and I have had at least two occasions where we perceived someone utilizing their expertise to undermine our efforts to support our child. Both times we were able to rely on our educational capital and do research to get our points across productively, despite what others were telling us. At the end of the meeting we cordially shook hands with the administrators who we had disagreed with, as if to say that the disagreement was all business – but it was not. My goals for my children are deeply personal, and I am fortunate to have the ability (based on experience and access to resources) to advocate for my son through bureaucratic structures.
Through that experience, I could not help but wonder about the other parents who did not have the cultural capital that I do. The ones who love their child just as much as I love mine, but have never had access to the knowledge necessary to effectively advocate for the services their child needs, because advocating involves the ability to successfully navigate from one side of a border to the other.
The conversation regarding identity development for parents of children with disabilities should not be focused solely on disability, and nor should it be solely focused on parenting. Rather, it should be focused on the complex set of skills necessary for parents to understand and operate within the context of multiple systems – all of which ask parents to straddle the border between ability and disability. It should be focused on the practical decisions parents make in order to reorganize their lives around the needs of their child. The paradigmatic framework by which parents make decisions for their children, and for themselves, is in and of itself a form of identity.
Disclosure statement
No potential conflict of interest was reported by the author.
References
- Anzaldúa, G. 2012. Borderlands: The New Mestiza = La Frontera. San Francisco: Aunt Lute Books.
- Erikson, E. H. 1963. Childhood and Society. New York: Norton.
- Fracasso, M. P. 2017. “The Concurrent Paths of Parental Identity and Child Development.” In Identity Flexibility during Adulthood, edited by J. Sinnott. Cham, Switzerland: Springer.
- Galinsky, E. 1987. The Six Stages of Parenthood. Boston: Addison-Wesley.
- Ryan, S., and R. Runswick-Cole. 2008. “Repositioning Mothers: Mothers, Disabled Children and Disability Studies.” Disability & Society 23 (3): 199–210.