How ableism erases our stories

Part One of a series on relationships and needs in my chronic illness/disability context.

Ableism erases our stories and distracts from our truths. It causes disconnection. And disabled people are just as capable of perpetuating this. My own ableism can show up as guilt and shame for having needs in my marriage. One way to dismantle this is by learning how to name, process, and examine these difficult emotions; which are skills most of us have not been taught and are actively teaching ourselves in adulthood. I do not want to contribute to the noise (ableism) that obfuscates both my own and my spouse’s experiences with chronic illness and disability. My story matters – his does, too.

Things changed when I became chronically ill. I was immediately faced with multiple losses, new things to learn and unlearn, medical abuse and trauma, adapting to symptoms and new ways of being, and changes in my relationships. As with any major life event, there is a “before” and an “after”. Before, I could easily knit together ideas in my writing. After, my working memory impairments make it far more difficult. While I am experiencing being chronically ill, I am not the only one going through change and adjustment. I am not the only one grieving, learning, and reimagining dreams and futures. I am not alone on this side of chronic illness and disabled reality. I am not alone in this life, or in this house. My spouse is here, too.

Care-giving and care-receiving aspects of all relationships are heavily influenced by ableism. Ableism dehumanizes and de-centers disabled people, but also erases the experiences of our non-/pre-disabled or non-chronically ill loved ones. Viewing my spouse as having been “short-changed”, or as inspiring for loving me and staying with me; assuming we are strained by me rather than focusing on how an ableist society harms us – these distract from not only my story and experiences, but also his!

We are all capable of feeding into ableist patterns when we don’t confront our own feelings about our needs and limits; when we continue to grip the independence myth too tightly to our chests; when we believe and act on the idea that some needs are valid and others are shameful. Which is precisely how my own internalized ableism can show up. I still struggle with feeling guilty for having needs and feeling shame for how I effect my spouse. This guilt and shame existed before I became chronically ill, too. Perhaps you are non-disabled/pre-disabled and relate to difficult emotions around your own needs. We all need support. We all have needs.

There is a difference between grieving the loss of abilities you once had, versus feeling guilt or shame for needing care and support. I too often pressure myself to deny my needs and try harder to ignore their existence. These methods of avoidance are ableism in action and are deeply rooted patterns I learned early in life. They do not align with my values, though. They do not align with the radical self-love I am building. Have you asked yourself whether the choices you make, or the thoughts you think, align with your values? Carrying and acting on guilt and shame without examining them keeps us stuck. Because sometimes they show us where we are not aligned. Sometimes they show us where we are upholding old ideas we no longer believe or wish to live by. And so, trying to stuff emotions away results in harm to ourselves and others. It takes up space and energy. It distracts and disconnects us. Instead, learning to face, question, and feel hard emotions; learning to be accountable and to repair – this is healing work. I want to lead with the truth that having needs is human. If I spend my energy on trying to abide by invented, exclusionary ideals and norms I cannot achieve; if I spend my energy on trying not to have needs… I am actually working very hard to dehumanize myself! And that means I have little leftover for others, too. Letting this shit stay loud means stifling myself and others. The noise of ableism is what keeps me from supporting myself, and my spouse.

Acknowledging our experiences impact those close to us is not to devalue or dehumanize. It does not demean my humanness to acknowledge my hard things are hard on my spouse, too. In fact, it is innately human to be connected in this way: to feel each other’s pain; to carry each other’s needs and experiences. Is this not what it means to be connected in community? In relationship? Too many chronically ill and disabled people have been abandoned by loved ones. Too many do not have the support they need and deserve, and are forced to carry all of it on their own. This is not a “sad story” – it is calculated oppression. These are outcomes of policy-making. This is what systemic and interpersonal ableism does. It leaves people behind. It pushes people to the bottom. Yet, it does not have to be this way. We can make the world differently, where no one is behind or beneath.

My experience with a supportive partner is, unfortunately, not the norm. I often think of myself as lucky. Lately, I question my use of this word, though. Being with someone who treats me as a whole person should not be some kind of “extra” in life. Every one of us deserves this. Nevertheless, my spouse and I choosing to be in this life together holds a type of privilege in comparison. Being married is rewarded in this world. Plus, I have someone to shoulder the load with me, and carry parts of it I cannot. I do the same for him. Community is one way to resist oppression and 1:1 relationships of all kinds count. Any time you grow community with another person, or multiple people, you have opportunity to resist empire and the ways it tries to set us apart and crush us into staying exhausted, alone, and controllable.

We are stronger together. I don’t care if it sounds cliche – it’s true. In our relationships and connections to one another we find building blocks for resisting oppression, dismantling harmful norms and systems, and rebuilding better. It is beyond time to rid ourselves of ways that breed disconnection (like ableist beliefs and norms.) On the path to unlearning, we cannot avoid facing and processing hard feelings and emotions. Without these crucial relational skills, we risk causing lateral violence in our communities, harm to ourselves, and inadvertent erasure of our loved ones. The noise of oppression in all its forms gets in the way of connection and interdependence. Unlearning internalized oppression (ableism, whiteness, and others. It is all connected!) liberates more than just myself: it also makes space for my spouse. We are in this together. We are one version of community. My experiences deserve honoring, and his do, too.