For decades, my mom and I have been a dynamic duo using the arts to creatively fight for women’s rights. And now we are using the arts to fight for my life.
In the 60’s and 70’s, during the burgeoning Women’s Liberation Movement, my mother, Bobbi Ausubel, co-wrote America’s first feminist play, “How to Make a Woman.” After each performance, cutting-edge and ruckus consciousness-raising groups helped women and men grapple with just how much gender roles dictated their lives.
As a little girl, I could care less. I played with my toys under the adults’ chairs, impatiently waiting for my parents so we could finally go home. Such was the life of a child of early feminist leaders. Yet the women’s empowerment message sank in. As an adult, I published a collection of true tales of women’s bold deeds and brazen acts. Then, my mother and I jointly adapted my book for the stage, which resulted in over 1,000 events—theatrical productions and open mikes—where audiences shared their own real-life stories of courage.
But now my mom and I have a new focus: We are fighting for me to get my life back. And once again our work involves a cutting-edge women’s issue.
I have Myalgic Encephalomyelitis (ME), a devastating chronic neuroimmune disease that disables up to 2.5 million Americans and 17-20 million people worldwide—a majority of whom are women. The disease is so debilitating, it often leaves me too exhausted to do basic tasks like cooking. It leaves my brain so muddled and foggy, I often have to pause mid-sentence to remember what I’m talking about.
ME is commonly known as Chronic Fatigue Syndrome, a belittling name now rejected by patients and disease experts. There is no cure and no FDA-approved treatment for this disease in which 75 to 85 percent of patients are women. It receives little attention and barely any research funding.
Lack of research, coupled with negative stereotypes of either the lazy lady patient or the hysterical woman, has translated to lack of help and treatment for people with ME—men and women alike. It is not an understatement to say that the federal government neglects ME: For the past 30 years, they have given ME only about $6 million per year in research funding. That’s the same as male pattern baldness, which does not leave anyone bedridden for years.
One quarter of ME patients are homebound or bedridden. 50 to 75 percent are unemployed because they are too sick to work. Some are too weak to feed themselves. Many, like me, have spent decades tethered to our beds, too weak to function, with little or no medical or governmental assistance.
The prestigious National Academy of Medicine (formally the Institute of Medicine) stated in 2015 that ME is a serious, chronic, complex, systemic disease that often can profoundly affect the lives of patients—moreso, even, than MS, stroke, diabetes, renal failure, lung disease, heart failure and various cancers.
Yet about 90 percent of people with ME are undiagnosed or mis-diagnosed because few doctors know enough to diagnose and treat the disease. A majority of doctors are unaware or misinformed. ME is not taught in medical schools. The CDC disseminates misinformation—such as claiming exercise will help us when, in fact, it hurts us. Even with recent major scientific advances regarding ME, the lack of federal funding for research means highly respected scientists must rely on crowd-funding.
No cure, no treatments, no research funding. It is understandable that patients struggle to hold on to hope.
Now, with me bedridden much of the time, my mom and I spend our days organizing demonstrations in front of the US Department of Health and Human Services, staging our women’s empowerment play as fundraisers for ME organizations, lobbying Congress and securing State and City Proclamations for ME Awareness Day, held each year on May 12. Thanks to our hard work and that of the MassCFIDS/ME Association, Massachusetts Governor Charlie Baker issued one this week.
Needless to say, in our dynamic duo my mom is more like Batman and I’m more like Robin: She is doing most of the heavy lifting and I’m supporting her.
This year, May 12 and Mother’s Day fall on the same weekend. So all weekend long, my mom and I will be fighting for the rights of people with ME. We want hope and healthcare equality to be granted to these disabled yet neglected Americans. And you should, too. After all, most of them are your mothers, daughters, sisters and women friends.