Antes muerta que sin silla : Cómo me empoderé desde la deconstrucción

Before I'm Dead Than Without a Chair is the intimate, political, and profoundly human story of Oyirum, a young woman with spinal muscular atrophy who grows up amidst diagnoses, operating rooms, and the expectations of others, and who ultimately finds in activism a way to define herself and reconcile with her own body. With a sharp and intimate voice, the author narrates her childhood marked by illness, surgeries, and medical uncertainty, but also by a social structure (her family) that supported her when the world didn't know how. A central idea that runs through her experience resonates in these pages: illness resides in the body, but disability is created by the environment. Through memories that sustain her and others that hurt, Oyirum reconstructs how she came to understand this essential difference. The illness was muscle fatigue, tremors, and the frustration of not being able to dance; the disability, on the other hand, was the stares, the exclusion, or the impossibility of accessing a simple microwave at university because of a staircase that separated her from the rest of the group. With humor, self-criticism, and a fierce love for her family, the author shows how each stage of life transformed her relationship with her body and how society, for better or for worse, shaped her self-perception. As she grows up, her identity becomes intertwined with feminism, student activism, and the political awareness born from lived experience. She discovers the word ableism and finally understands that what was happening to her was not a personal failing, but a consequence of living in a world not built for bodies like hers. Better Dead Than Without a Chair is neither a self-help book nor a theoretical essay, but a story that combines humor, anger, tenderness, and politics to show what it means to live in a vulnerable body within a society that still doesn't know how to be inclusive. It is an invitation to understand disability from within and, at the same time, a gesture of solidarity for those going through similar experiences. A necessary book to confront what is almost never talked about and to understand how to survive in a world full of invisible barriers.