Becoming Disabled (Again)
Before giving birth to my daughter, in September 2019, I had made tremendous progress living in my Disabled bodymind. I had spent years trapped in the medical-industrial complex, being given label after label, diagnosis after diagnosis-- trying to understand the unique complexities of my experience being neurodivergent and physically Disabled. After that, I worked through two decades of internalized ableism before moving into a space of radical acceptance; figuring out what works for me, what doesn’t work, and how to cope with my particular symptoms and experiences. I spent years attempting to perfectly curate the environment around me to lessen the impacts of my Disabilities. I embraced my bodymind, my pain, and all of the adjustments I needed to make to thrive. Sometimes, I didn’t feel all that Disabled. But the morning I became a parent, I became Disabled all over again-- in new and unexpected ways.
A baby changes everything, whether you’re Disabled or non-Disabled. Within the blink of an eye, a tiny human appears in your arms. There is no training, no roadmap, no curriculum to follow to learn how to take care of this tiny being (or how to take care of yourself while taking care of your new human). All at once, it can be overwhelming. Too loud, too exhausting, too painful, too many baby products, too many bright lights. “Too much, too soon, too fast” described my experience as a new parent, but I was encouraged (both indirectly and directly) to simply shut up and be grateful for my “healthy baby.”
As a society, we discourage parents (Disabled and non-Disabled) from talking about the realities of parenting. We police each other, and expect only gratitude, bliss, and enjoying every diaper change, feeding, and screaming meltdown. Not only do we discourage this discourse, we actively criminalize these emotions, and punish and incarcerate parents who have the audacity to be honest about the difficulties they face as parents. BIPOC, especially Black women, are at an increased risk for state intervention in the event of health challenges, specifically postpartum mood and thought disorders. But why don’t we hold space for the full spectrum of emotions? Why don’t we hold space for the ways in which moving into a parenting role can be Disabling all over again?
Can I be a good parent if I have a Disability?
What if I develop postpartum psychosis?
What if I can’t do what needs to be done for my child?
If I tell my doctor I’m struggling, will they take my child away from me?
Since my daughter was born, I have worked to develop a practice of radical honesty-- with myself and with those around me. I won’t “silver lining” this experience. I won’t embrace toxic positivity. I will be vulnerable and true to myself. Parenting is hard. Being Disabled is hard. Being a Disabled parent is even harder. Everyday, I feel Disabled in new ways. My old tricks don’t work anymore, and I have to adapt on the spot. I experience tremendous grief over what my bodymind can and cannot do, and how my Disabilities impact my child.
When my daughter is crying, I sometimes have to step away instead of comforting her. I have to retreat to the comfort of my noise cancelling headphones and weighted blanket, because I know I cannot de-escalate her when I am escalated. But the grief is still there. The anxiety, worry, and sadness that I am unable to meet her needs in that moment, the way she deserves, remains present. When I can’t hold her as long as she wants due to the pain in my spine or legs, I feel grief. When I don’t have the energy to make her a nicer lunch than a plate of cheese and crackers, I feel grief. When I can’t take her for a walk that day, I feel grief. When I have to look away during a medical procedure due to my own trauma, I feel grief. I feel grief.
I feel grief.
But I force myself to remember that Disability is innovation (as said by Disabled ancestor Ki’tay Davidson). Disability is creativity. Disability is adaptation. Disability is resilience. Crip knowledge keeps me alive, and crip communities keep me grounded. There is no “right way” to parent, just like there is no “right way” to have a bodymind. Finding the connecting threads between parenting and Disability, and pushing myself to live in my values and beliefs about our inherent worth as humans, regardless of what we can do or produce with our bodyminds, keeps me moving forward. I am grateful to be part of this lineage, and I will always share this bit of crip wisdom with my daughter.
Stefanie Lyn Kaufman-Mthimkhulu (they/she) is the core teacher of BADT’s Birth & Disability course, a guest teacher in BADT’s Full-Spectrum Doula Training, and the Director of Project LETS @projectlets; a national grassroots organization led by and for folks with lived experience of mental illness, Disability, trauma, and neurodivergence. Their work specializes in building peer support collectives and community mental health care structures outside of state-sanctioned systems of “care” -- grounded in principles of anti-racism and Disability/Transformative/Healing Justice. As a skilled facilitator and curriculum developer, they have led hundreds of trainings across various sectors for students and practitioners. They have also served as a consultant for mental health policies, program development, and accessibility. As a queer, mad, Disabled, neurodivergent human with lived experience of psychiatric incarceration, they are an active community organizer invested in disrupting multiple systems which disproportionately discriminate, harm, and kill our community members worldwide.