Alice Wong, Project Coordinator of the Disability Visibility Project, interviewed her longtime friend and new mother Anne Cohen on August 28, 2014 at StoryCorps San Francisco.
This is the second and final part of their conversation. Anne recalled some very painful recent memories as a new mother. Approximate excerpts below.
On the expectations and pressures of first-time mothers
Anne: I think the, the hard part about being a mom was the expectations of being a mom and the notion that you sort of, had to do everything. You had to drive yourself to mom’s groups and do all that stuff in order to have a happy baby. And I think my biggest fear is about how I would carry around my son if I didn’t feel good. And-and my hands shake a little, would I be able to put his shoes on, and dress him…Even on lack of sleep and everything else, you somehow managed to be able to care for your child, and I think the hormones kick in, and, and your body just does things you never thought you could do… I think that’s so important that you know, that people often presume that when one parent has a disability that the other parent will be doing the majority of the hard work and that’s really not the case at all because you’re the mom. Being a mom so much of that kind of expectation of doing, performing the work. It falls on you.
Alice: Did you ever seek advice from other moms with disabilities?
Anne: We’re really lucky in the Bay area. There’s a couple moms with disabilities in the disability community that I know that were wonderful role models.. And then there’s a group in the Bay Area called Through The Looking Glass, which is a group, a non-profit that supports moms with disabilities. And I met with Judi Rogers, who actually wrote a book about making adaptive equipment for parents with disabilities but what’s interesting is the each person’s different, so all of her advice, while helpful, didn’t actually fit me. So, you make it up as you go along, it’s trial and error, and you just kind of figure out how you’re going do things along the way on your own….
An incident that happened shortly after coming home with her baby
Alice: Now shortly after the birth of your son, some stuff went down some really serious things happened and would you wanna share that with me, and, you know, it’s up to you how much you want to disclose, but it seemed like it really was a major turning point in your life.
Anne: So, most parents when they have kids, and everybody told me this, but I didn’t believe them, is that you fight with your partner. You end up wanting to kill each other. You hate each other, you swear you going get divorced, you’re never going talk to each other again.
My husband and I started fighting and he’s an engineer and he doesn’t always interpret things the way maybe other people would. People that live with engineers would identify with that, so You know, I got emotional and the baby was keeping me up at night and I couldn’t go to back to sleep so I would do the typical nesting thing moms do, Iike open baby gifts. And then I’d exhaust myself and go back to bed. Well, he thought I was not sleeping at all and interpreted other behaviors I had as something really serious. And so he… confided in a next door neighbor. And I did, too. I sort of confided in friends and neighbors. And said, you know? Something’s going on with my husband.
Alice: Different neighbor?
Anne: Same neighbor and friends and family….And I knew… we were facing…this kind of crisis moment. So one of our neighbors is a doctor, and one day when he confided in her. She said, well you need to call my friend that’s a psychologist, and he called the psychologist, and she administered a screener, The psychologist said the screener flagged me as having severe post partum depression. Postpartum depression is a serious thing and a real thing and many women suffer from it. With all the stress I was under I may have been developing postpartum depression. But it is precisely what I went through why many woman people don’t seek help. The psychologist told my husband to call the hospital where I delivered my baby. He called the labor and delivery department who then call the police.
Alice: Without even talking to you? Purely based on your husband’s reporting?
Anne: Right. Just that, just like that. And the police came to my home and my next door neighbor came to my door and we were fighting and she said that I had to go to the hospital with her. She said I could either go with her or go with the cops. I knew what was going to happen. I knew the healthcare system. I knew that I was going to be placed in the ER on a suicidal watch.
And because the medical system’s job is to protect the mom and the baby from harming herself or the baby, once that happens, you have no rights. So I, was taken to the ER, and was put on suicidal watch. I had to sleep with the curtain open while security guards watched.
I had to ask permission to use the restroom and couldn’t leave the room. I had to ask and beg for food. I was allergic to gluten, so I had asked for gluten free food, which they did not have available and so I got very sick. I was eating constantly to feed my son.
My son was with me, but I had to ask permission to breastfeed. I had to beg for pain medication. I had had a C-section, and I was only on Advil and Tylenol, and so it took three rounds of nursing shifts to convince them that I wasn’t completely insane and allow me access to medication and a bit of privacy in the room.
And so I was there for 24 hours, and kept up all night. And, I knew that I was gonna be transferred to a psychiatric facility put on what was is called in California a 5150 hold. And in California, that means that, you’re allowed to involuntarily committed to a facility for a minimum of 72 hours, sometimes longer.
Sometimes you have to go through, court appeals in order to get released. And I may have been put on medication. Because I knew the healthcare system, I advocated for what hospital I would go to. We’re very lucky in the Bay Area. There’s actually a hospital that has a program that specializes in postpartum depression, one of only a few in the country. Knowing I might have to pay more out-of-pocket costs, I begged the ER to send me to that hospital. So had to wait for a bed to become available….
And then again, you know, we talked about being compliant. And I knew I had to not get upset… To be calm and to say, yes please and thank you to the security guards. And not get mad because it would flag me as being insane…so eventually got me a bed which is horrible because there are many people with serious mental illness that don’t have access to hospital beds… and I was taking up somebody’s bed that needed it.
So the ambulance came to the hospital and right before they took me they took my baby away and the social workers came and they said that if I didn’t find somebody to take my son, he was going end up in foster care. So my cell phone was dying, with limited power. I had maybe 10 minutes to try to get someone. And I was frantically calling everybody I could think of to take my son. Because they wouldn’t let my husband necessarily be alone with him. Because they didn’t know what was going on between us.
Being in a psychiatric facility for 72 hours without her baby
Anne: Once I got to the hospital, to the psychiatric facility, and they didn’t have a breast pump. In order to get one they had to find one in the main hospital. Because it was at night they said the couldn’t. So I had to wait until the next day, until well into the afternoon.
Alice: It must have been very painful.
Anne: It was horribly painful. I could have ended up with a breast infection. And, I didn’t know it but when you stop breastfeeding cold turkey you can actually not only give yourself an infection, but you can actually develop severe depression… And I remember forcing myself to go to sleep that night feeling like I could hearing the cries from my son for my milk, and woke up the next morning, and my breasts, I couldn’t even hand express any milk because they were so full and painful. When I finally got access to the breast pump, it was this old industrial breast pump, it had, a glass dome, with silver, and it looked like something out of a 1950’s movie.
And they wouldn’t let me have it in the ward and because it had a cord, and might risk strangling myself or another patient. So they made me breast pump in the room in which they did forced medication. And as part of it, they made me sign a waiver that said that I would be able to give the milk I pumped to my son but that I might take medication afterwards. So they would only, allow me to breast pump only for comfort and I had to pump and dump any future milk I was going to produce.
I felt like my child was literally ripped from my breast and that I might not ever be able to give him my milk again. Let alone not knowing where he would end up was so torturous. It was the worst thing I’ve ever been through. [sobbing]
So when I was breast pumping, I was in this room and I knew how things worked, and I saw the table with the restraints and there was a drawer that said sodium pentothal…so I had to use this breast pump and keep from trying to cry and scream….And so that the woman that helped me breast pump was very sweet and she sort of, massaged my breast to help me get the milk to let down. And then she left the room. My hand shook when I removed the bottles because I was filling multiple bottles really quickly.
And I spilled the milk on the ground and I literally I cried over spilled milk and I fell to my knees and I literally silently sobbed on the milk on the ground. That these precious bottles might be the last breast milk my son might ever have.
On future plans to help other mothers in similar situations
Anne: I’ve been through a lot of things in my life. A lot of cruel experiences in the healthcare system but I have never been through something more inhumane and cruel as I went through…No mother should ever go through what I went through and it is not therapeutic to be separated from your child even if you do have postpartum depression…But after I was released, I realize how little interventions services there were, and that any services that there were I had to drag myself to mom support groups.
Alice: Yes, and I think this is a major point where you realize what needs to be fixed. And at this point, you don’t want any other mother to feel like this again. So tell me about today, what you’ve learned and what you wanna do in the future.
Anne: After want I went through as a child wanted to, along with other colleagues change the health care system for people with disabilities and now my [goal] is to change the mental health system for women. And I want to form a retreat center that becomes a model where moms and babies can be together, where they have services to help you recover and things like massage and acupuncture and Reiki and all these very hippie services all in one place. And temporary housing services to help people care for your newborn, places where you can just be at peace.
A safe space… a space to learn how to handle stress… and how to become economically self sufficient if you need to and on maybe get access to educational with things that a woman needs in that first year when their lives are turned completely upside down. You assume when you have a baby you’re going be surrounded by friends or family and that’s not always the case…
And then I also want to create a visiting [peer parenting] program in which other moms would be trained in psychological support services to come into the home and to support the mom. And to just give them rest. Because for many women it’s unrealistic to make them go to…support groups or other services outside their home.
Alice: Well, I think if anybody can achieve this idea about how we treat for moms, I know you’re gonna do it. And I wanna thank you for really, baring your soul and really revealing this personal story.
Anne: I can’t imagine a better person to tell it to.
Alice: And I think this will help. A lot of other moms who might come across this recording in the future, that they’re not alone and that this, things will get better.
Anne: Thank you, Alice.
Anne: Thank you, Anne.
Anne Cohen has a form of muscular dystrophy called Myasthenia Gravis. She first developed symptoms at the age of eight and had to navigate the complexities of the health care system for over 10 years before she was diagnosed. Her experiences in navigating the complexities of the health care system and identifying providers to deliver quality care has made her an advocate for people with disabilities. As a disability advocate she emphasizes working within the health care system in order to empower consumers to have a direct impact on the delivery of care. She became a mother in 2013 to an enchanting baby boy. Her joy for her son was over shadowed by her experience with navigating the health care system in ways she did not expect. Her dream is to create support services for new mothers so no one has to experience what she went through.
As a disability and health policy consultant she has over 15 years of experience in the disability field and has served in a variety of sectors promoting access to services for individuals with disabilities. She has served on several state and federal advisory committees that address disability issues including the Agency for Healthcare Research and Quality (AHRQ)’s technical panel for the development of health care quality measures for People with Mobility Impairments and the California Health Care Foundation’s (CHCF) development of California Medicaid Health Plan Performance Standards and Measures for People with Disabilities and Chronic Conditions.
She founded Disability Health Access, LLC, in 2005, advising healthcare organizations on how to improve services for seniors and people with disabilities. In 2012, she collaborated with Harbage Consulting, a health policy consulting firm, with expertise in public programs and delivery system reform. The team advised the State of California on a three-year federally funded demonstration to promote coordinated health care delivery for seniors and people with disabilities who are dually eligible for Medicaid and Medicare. Before consulting, Ms. Cohen was a disability manager at Inland Empire Health Plan, a non-profit Medicaid Health Plan in Southern California. At IEHP, she developed disability-targeted community outreach strategies and coordinated service delivery enhancements. Prior to her position at IEHP served as a research fellow with the Rehabilitation Research and Training Center at Oregon Health Sciences University. Ms. Cohen was also a disability advocacy specialist for the Oregon Department of Health Services.
Ms. Cohen has a Master of Public Health degree in Health Policy and Administration, and a Bachelor of Science degree in Social Science from Portland State University, Portland, Oregon.
Disability Health Access
Alice Wong, is a Staff Research Associate, Department of Social and Behavioral Sciences, UCSF. Alice works on various research projects for the Community Living Policy Center, a Rehabilitation Research and Training Center funded by the National Institute on Disability and Rehabilitation Research and the Administration for Community Living. She is an author of online curricula for home care providers and caregivers for Elsevier’s College of Personal Assistance and Caregiving. Currently, she is the Project Coordinator for the Disability Visibility Project: A Community Partnership with StoryCorps and an advisory board member of APIDC, Asians and Pacific Islanders with Disabilities of California. Alice is also a Presidential appointee to the National Council on Disability, an independent federal agency charged with advising the President, Congress, and other federal agencies on disability policy.