Oral Histories

Interview of Jane Acem

Interviewed for the UCLA Center for the Study of Women’s Chemical Entanglements: Oral Histories of Environmental Illness series. Lives with Multiple Chemical Sensitivity (MCS). Developed MCS after workplace exposure. Patient advocate.
Series:
Chemical Entanglements: Oral Histories of Environmental Illness
Topic:
Social Movements
Environmental Illness
Biographical Note:
Interviewed for the UCLA Center for the Study of Women’s Chemical Entanglements: Oral Histories of Environmental Illness series. Lives with Multiple Chemical Sensitivity (MCS). Developed MCS after workplace exposure. Patient advocate.
Interviewer:
Vaughn, Rachel
Interviewee:
Acem, Jane
Persons Present:
Acem and Vaughn
Place Conducted:
The interview was conducted by telephone.
Supporting Documents:
Records relating to the interview are located in the office of the UCLA Library’s Center for Oral History Research.
Interviewer Background and Preparation:
The interview was conducted by Rachel Vaughn, the Oral Historian in Residence at the UCLA Center for the Study of Women.
Processing of Interview:
The interviewer prepared for the interview by reading a pre-interview questionnaire completed by the narrator.
Length:
3.5 hrs
Language:
English
Copyright:
Regents of the University of California, UCLA Library.
Audio:
Series Statement:
Chemical Entanglements: Oral Histories of Environmental Illness is a collection of interviews with over seventy individuals living in the U.S. and Canada whose family history, occupation, art practice, or activism have brought them into direct contact with illness experience and disability related to chronic, low-dose exposure to toxicant chemicals. The procurement of this collection (from March 2019 through September 2020) was sponsored by the UCLA Center for the Study of Women under the directorship of Rachel C. Lee, with interviews conducted by six undergraduates, five graduate students, two career staff, and two faculty members at CSW.
Note:
Please delete file size 451990 under Legal Agreement.
Personal background--Experience of living with chemical sensitivity--Being diagnosed with MCS at the hospital after chemical exposure at the workplace--Working as a patient advocate--Experiences of chemical assault--Patients with MCS and chronic fatigue syndrome minimized and invalidated by medical professionals--Difference between chemical sensitivity and allergies--Learning to not take pharmaceuticals to avoid further damage--Memories of growing up in Cleveland--Scent based memories of childhood home--Exposure to Lysol and sensitivity to cleaning products--The impact of MCS on work--Working at a credit card processing firm and exposed to chemicals with little ventilation--Health difference while at work and away--Receiving mental health support from the county mental health facility--Finding new workplace that has airflow--Limited social life due to MCS--Limited social life due to MCS--Learning about the illness and reactions towards different pharmaceuticals--Reading literature on MCS--Relationship with family--The financial difficulty of being chronically ill--Finding online community--Rates of suicide in the MCS community--Decontamination as a large expense--MCS network as information sharing rather than advocacies--Importance of housing for people with MCS--Living in a car--Moving from Cleveland to California for the climate--Total avoidance as tactic to limit chemical exposure--The lack of change in the perception regarding MCS.
Wrapping up--The importance of validating each other