Roadmaps: Navigating My Relationship with My Parents

Dear Rebekah and Hannah,

I feel super fortunate to have a family that has supported me at every turn since I was paralyzed, but after seven years, I’m worried they may be cramping my style. My mom does all my care and my dad does most of the driving me around. I don’t have the money to hire enough staff to replace them, but I need some breathing room. How can I carve out some independence without hurting our relationships?
Needing Space

Dear Needing Space,

The line between parents and their children can be complicated in lots of families, but disability is one layer that can make those boundaries even blurrier and more difficult to define and hold. I’m not in the position of needing to rely on my parents for daily care, so I know my relationship with independence differs from yours. Even so, as I read your words, I found myself flashing back to the many times I’ve been forced to rely heavily on my parents. I’ve moved back into their home three times as an adult — once at 23 after a divorce, once at 29 when my roommate situation shifted, once at 36 when the home I’d been living in with my partner and our baby became inhospitable to us, and our whole family moved back into my childhood bedroom. Each time, my current living situation ended before I could find a new accessible, affordable place to live. Each time, the hunt for a new home felt impossible. Each time, I felt the confusing tension between deep gratitude for my parents’ help and resentment that I needed it at all.

We’re often in that position, aren’t we? The world as it’s been built has not prioritized spaces where we can thrive. Finding employment, saving money, affording good, reliable care, acquiring a healthcare setup that doesn’t require us to stay in poverty — it’s a piece-by-piece building project and can feel like trying to construct a tiny planet from scratch in a windstorm. Even when we’re hard at work, trying to build a life for ourselves, so many of us find ourselves forced into relying on our families. I’ve seen how this kind of relationship can offer a picture of interdependence and a care that laughs in the face of our culture’s worship of independence above all else. I’ve also seen how these forced relationship dynamics can make it really difficult to carve out a space for self-definition — practically and psychologically.

I imagine you know there are many resources out there that can help you do the practical work to assemble a life of more autonomy (see Resources). And while the process of researching options and taking steps can be overwhelming and full of starts and stops, the steps do add up and often pay off. As I’ve been reading and rereading your question, though, the most pronounced longing I hear is for a deep breath — a chance to find and assert your own unhampered style — all within a complex relationship dynamic with people you need close and want distance from. It’s a path that’s hard to chart with a Google search, but it’s one I’ve been trying to piece together for years.

One of my earliest memories is the sound of my dad’s voice reading me stories in the quiet moments between the pounding, pounding, pounding of the MRI machine. I’m almost 40 now — my parents in their 70s — and still, whenever I’m with them, I’m also a little kid tucked beneath their wings. For years, we were a trio, doing battle against cancer, against pain, against inaccessibility. I clung to them. Even now, I feel the ways I cling to them. We were all shaped by my early cancer and paralysis, but as I got older, I struggled to understand where their experience ended and mine began. Asserting any kind of separateness — developing my own perspective, telling a different story — felt like a betrayal of the ones I am so lucky to have and to whom I owe so much.

I’ve found two portals that helped me sink deeper into my own sense of self. Writing was my first entrance into the wide-open spaces that allowed me to tell my own stories for myself. It was through self-narration that I remembered my own experience of being a tiny child in those MRI machines — how every time my dad’s voice disappeared in that pounding, pounding, pounding, I would close my eyes, picture myself in a rocket, and leave my body for outer space.

My parents were there with me, and there were places they could not go. I’d depended on them for my survival, and also, I’d found my own ways to survive. I didn’t understand that until I wrote it. The other way I started to feel myself bloom was through friendships with other folks who live with disability, others who moved through the world the way I do. I recognized my own experience more clearly when I saw it reflected back to me in them. I dreamed more for myself when I witnessed them living bigger, softer, bolder than I knew I could.

All of this makes me wonder — what are the stories that live inside of you alone? Where are the places — what are the experiences — your parents can’t access, even if they wanted to? What are the secrets your body holds? And who might listen to you share them with a great big exhale of knowing? I find myself wondering what kinds of deep breaths you might be able to take as you explore the infinite space of your internal and interpersonal worlds. I wonder what kind of style might emerge as you mark the map of your own story among companions who’ve traveled some of the same roads.

Love, Rebekah

Dear Needing Space,

After finishing grad school in Kansas, where I lived on my own with the help of hired caregivers, I moved back home to Iowa to live with my parents. I hoped that I’d be able to move into my own apartment again within months, that finding enough caregivers and an accessible apartment in such a short timeframe would be a breeze. Suffice it to say, this didn’t happen.

I love my family very much, and, like you, feel very lucky to have such fiercely supportive parents with whom I have a very good relationship. But straining against any sort of limitations to our autonomy is hard, especially when we keep coming up against the same barriers, and especially when those barriers are so often systemic.

My case manager had successfully written a Medicaid Exception to Policy (something you should look into) which increased my allotted hours of care to the amount I needed, a process which had been such an exhausting battle, getting the Notice of Decision in my favor felt like a miracle. It is not lost on me that this miracle is in part due to the fact that my parents have always been my fiercest advocates, and that my case manager understands my needs and fights for them — something which is not always the case for people dependent upon state-funded services.

And yet, even with this Exception to Policy in place, finding enough caregivers for me to move into my own space again felt like searching for wildflowers in acres of dirt. I’m sure you know why it’s so hard to find caregivers as well as I do — low wages, lack of insurance benefits, a care workforce depleted by a global pandemic (just to name a few).

Sometimes, within the walls of my parents’ house, I felt these barriers coalesce into a net, which seemed to shrink closer and closer around me until I could feel the fibers scratching at my skin. As if on instinct, I turned to an activity from my childhood — going for strolls around my community — except unlike in childhood, this time, I walked (rolled) by myself.

Being alone was liberating, invigorating. I didn’t like to decide where I was going before I left. Of course, all routes lead back to the driveway of our house, the shade cast by the ash tree out front, the “can you let me inside now?” text to my mom. But the space in-between leaving and returning was ripe with possibility, a time to sink into the rhythm of the sidewalk felt through my wheelchair, the rhythm of words in my mind. It was time to be alone, although only to an extent — I ran into neighbors frequently, witnessed squirrels and birds and insects going about their daily lives. My walks were a chance to feel held by the environment around me, and just as importantly, a time and space for me to grow far, far beyond any walls or net.

It took me over a year to cobble together enough long-term caregivers for me to move into my own apartment, and another year before I had a stable care situation. I’m lucky, as I live in a sizable city with a steady supply of college students. Soon, however, I’ll be losing a handful of these helpers as they move away for various reasons. The stability of my current situation is always in flux, as is my living environment — having twelve different people come in and out of my apartment on a weekly basis to be my arms and legs can be its own sort of exhausting. When I feel the net shrinking around me again, I do what I’ve learned to do: take solo walks around my community.

At the end of the day, those of us dependent on caregivers to keep us alive must find ways to carve out our own space and story, from day to day, in whatever present reality we find ourselves in. I don’t know if you’re able to go on walks by yourself around your neighborhood (I had to assure my parents I’d be OK and remind my mom how to view my location on her phone in case she got worried), or if you even enjoy the outdoors. But I do know that this space we hold just for ourselves can come in every shape imaginable, and taking the time to occupy that space is sacred. Are there places you can be without your parents there, too? Are there activities or passions that you could cradle and nurture as just your own? I know these suggestions don’t solve the overarching problem of lacking outside caregivers. But they might help you breathe deeper in your current situation, which you very much deserve.

Love, Hannah

This is the final installment of Roadmaps in New Mobility, but you can subscribe to the column on Substack at messyroadmaps.substack.com, and you can still submit questions to Rebekah Taussig and Hannah Soyer at messyroadmaps@gmail.com.