On July 7, 2021, Erin Gilmer, a lawyer and disability rights activist, died of suicide at age 38. Her work centered on the view of health as a human right. Erin fought tirelessly for patient-centered care and for a health care system that was more responsive and compassionate to the needs of patients.
Gilmer’s advocacy was based on her firsthand experience as a patient. She had an array of complicated health conditions, including rheumatoid arthritis, diabetes, borderline personality disorder, and occipital neuralgia. She shared her own experiences to illustrate the barriers, difficulties, and degradations she found to be inherent in the modern medical system, from the 15-minute doctor visits to the trauma of the health care experience, and to being dismissed as being “difficult” when she tried to advocate for herself.
Gilmer encouraged people to advocate for themselves, writing a free guide entitled What You Should Know as an Advocate. She included the voices of over 100 advocates from every walk of life to share what they wish they knew going into advocacy and what advice they’d give to other advocates. The guide focused on what it really means to be an advocate, in particular “the challenges you’ll face, the ups and downs you’ll experience, the realities of the commitment involved, the people skills that will impact your work, and the toll it can take.”
Erin demonstrated the realities involved in being an advocate, how hard it is and the amount of perseverance it takes. She shared her health struggles and the pain she felt worsening daily, calling on those in the medical profession to acknowledge patients’ lived experiences, truly listen to them, believe that they are suffering, try to find a reason for their suffering, allow patients to become colleagues in their care and share in decision-making, find humility, and extend compassion. Erin let us see into the reality of her struggles. In the end, she didn’t feel heard, believed, or cared for by the medical profession and decided she could not keep living in so much pain. The hope is that we can carry on her fight.