Parenting a Disabled Child: Nurturing Self Worth | Shailen Singh | TEDxTexasStateUniversity

I'm the proud father of three young children, and being a dad is central to my identity. Part of my responsibility as a father is to make sure that my children have a healthy sense of self-confidence. I want them to grow up knowing their self-worth. My middle son is disabled, and for me there's really no difference between parenting him and parenting my other children. The biggest challenge I experience comes through managing the multiple administrative processes that we have to experience as a result of his disability. These administrative processes really demonstrate the chasm that exists between how I see my son and how the world sees him, and I can't help but wonder what messages these administrative processes send my son about who he is and how I as a father need to fight to overcome them. So case in point, child care. My partner and I both work full-time, so reliable, affordable child care is an absolute necessity for us. With our other two children, it was a pretty simple process. We'd go online, look at reviews, take a tour, write a check, and we had child care. With our middle son, it was a vastly different experience. Now, when my middle son was an infant, his developmental curve mirrored that of a neurotypical child. As he grew older, his pathway deviated a little bit. He charted his own path, and this is important because corporate daycare structures are built on an assumption, and that assumption is that all children follow the same developmental pathway. It's a pretty linear pathway. So as a child gets older, they develop new skill sets associated with independence and self-care, and daycares can adjust their staffing structures accordingly. So a child gets older, they need less attention, and daycares can adjust. The challenge here is my son doesn't fit those assumptions, or rather, those assumptions don't fit my son. So we would go in and have very well-intentioned conversations with daycare center directors and care providers about what kinds of structures needed to be in place in order for my son to be accommodated. We would talk about whether they could handle his routine of care. My son is a very social being, and so we'd talk a lot about whether they'd be able to facilitate happy interactions with him and his peers. Simply put, was this going to be a safe place for him to As a result of those conversations, we would always walk away with hypotheticals and possibilities. So for another example, let's talk about the playground. My son is a bit of an adventure seeker, and so he loves the playground. It's difficult enough to find accessible playground equipment, but the one thing my son can do is swing, and let me tell you, he loves to swing. The higher and faster he goes, the more his stomach drops, the more happy he is. The challenge here is that in order for him to get out of the playground and get on the swing, it requires a staff member to be there with him to pick him up, take him out of his chair, put him in the swing, and stay with him the entire time. Now, I recognize that staffing structures don't necessarily allow for that. I understand it, but this is one of those examples of structures that were in place that weren't built to meet his needs. So as I mentioned, we'd always just walk away with well-intentioned hypotheticals and possibilities, and as with many instances of systemic discrimination, we never got a hard no, we just simply never got a yes. And so I can't help but wonder, what does rejection like that do to the self-worth of my son? Because he doesn't fit the box of what neurotypical development looks like, he's routinely and consistently denied access to resources and services. Now, don't get me wrong, this had an impact on us as parents as well. My partner and I have taken new jobs and changed careers in an effort to get additional flexibility to manage his schedule of care. We've also moved to different locations in an effort to access more structures and models of care related to family. And we're not unique. Parents of children with disabilities have higher rates of unemployment, higher rates of underemployment, and flatter career trajectories. And this is something that impacts women caregivers much more so than it does men. But we're not the issue here. In fact, we're an ancillary part of the conversation. The key concern I have is this. What messages do we send children with disabilities about their bodies from the very beginning, from the very start, in child care? We plant seeds that they don't fit. And we leave them to deal with the fruits of self-doubt that arise as a result of these seeds, when all in all, those seeds were poison. We measure these children based on a scale that was never built for them. And then instead of recalibrating the scale, we simply move on to the next child without giving any sort of consideration about what the measurement did to the first child in the first place. Now, as a result of being my son's dad, I've learned a little bit about disability. And I have a lot left to learn. I have found it important to supplement what I've learned by reading works by disabled authors in efforts to get a more personal lens on what disability looks like so that I can understand who I need to be in order to serve him well. But the one thing that I've absolutely learned is that ableism isn't some giant boogeyman chasing you around with a chainsaw. Rather, it manifests itself quietly and insidiously in things like administrative processes and organizational policies telling you what you can't do because of who you are. So many more hoops to jump through. So many more forms to fill out. So many more no's to get through in hopes of getting to a yes. Now, right now, it's my job to take care of that stuff. After all, my son is only eight years old. But I also need to set him up to be able to navigate through a world that wasn't built for him and told him as much from day one. And so in order to do that, there's a few things that I need to make sure that he knows. I need for my son to know that he is perfect. I need for my son to know that his body is perfect. I need for my son to know that his disabilities are a defining characteristic of who he is. And they define him as something beautiful, worthy of love, and worthy of equitable access. I need for my son to know the simple truth is that he deserves better. Better than anything I'll ever be able to give him, but most certainly better than anything the world currently gives him. And in doing so, I'm hopeful that I can partner with my son to maybe rethink how we think about inclusion and inclusivity. Because it's an easy concept to talk about. And it's an easy thing to talk about valuing neurodiversity. But until we get to the point where we challenge the assumptions that undergird processes associated with a disability that restrict full participation for people with disabilities, until we listen to disabled people as the experts and utilize their expertise in framing what these processes need to look like, and in doing so recognize that the assumptions that we had were based on a very limited paradigm of what it means to be human. And until we then shift those assumptions to reflect the fact that disability is a normal part of the human experience, and in fact it's one of the most ubiquitous parts of human life, we will continue to plant seeds that are antithetical to making this world a more just and equitable place for people like my son. Now as I mentioned at the start, my job as a father is to make sure that my son grows up with a healthy sense of self, a healthy level of self-confidence, and knowing his self-worth. It's something that I strive for on a daily basis. I am hopeful that someday these administrative processes that we can't avoid interacting with do a better job of recognizing him and valuing him for who he is, instead of distilling him down to who he's not. Thank you.