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 first of two parts of their conversation. Anne talked about her experiences as a child with a disability and her interactions with educators and the healthcare system. Approximate excerpts below.
Growing up with a disability at a young age
Anne: I was born a suburb of Dallas, Texas. And then moved when I was eight to Portland, Oregon where all my extended family. You know, growing up in the south, really, I think influenced me in a lot of ways. So it made me really outgoing and be able to talk to people, but it also made me, from a very early age, be able to read people. So, in the south, there’s a saying where people talk nice to your face and shit behind your back. This idea very early on, helped me learn to read people, how to charm people and it served me well in sort of helping me navigate the world. So I’ve always had a disability. But my first disability was learning disability so math and reading difficulty.
It wasn’t until I was eight that I got symptoms of a physical disability. I was lucky because I had experience in navigating the education system and getting access to disability accommodations but only for my learning disabilities. And then I started losing the ability to slowly write and I didn’t have a diagnosis. In fact, it took over ten years to get diagnosed with my disability, my physical disability. And so, during that time, all my teachers would then give me accommodations because the Individuals with Disabilities Education Act, it’s all driven based on professionals meeting in groups with their parents and having a diagnosis. And I didn’t have that [for my physical disability, only my learning disability].
I can remember 2 incidences in particular. One, when I was in 6th grade I had a teacher that was really obsessed with the perfect handwriting, we were learning to write in cursive. And she thought that, good handwriting was the key to success and your future. And I couldn’t write. I had broken my wrist. And so, my muscles were weak, anyway. So, I would switch between my right hand and my left hand when one hand would get weak. And, she used to tell people that it would confuse my brain. And it would prevent me from writing properly. And, if I didn’t have good handwriting, I wouldn’t be able to ever get a job.
Alice: That’s weird. It’s like, cleanliness is next to godliness.
Anne: And at one point when I switched hands, she stopped class and she told everybody in the front of the class that she was going change our desks. And she ended up sitting a boy next to me that I had a big crush on and she handed him a ruler and she told him every time I would switch hands to hit me on the hand with the ruler to make me start using my other hand.
Alice: That must have been so humiliating.
Anne: It was humiliating and, and I think more than anything, it, it sort of taught me my first fear of disability. It made me afraid, what if she’s right? What if my physical disability is gonna keep me from being successful. I think that having a disability, it’s, it’s not the disability that’s the hard part, but it’s the fear. The fear that you won’t be economically successful, that you won’t be able to support yourself, that you won’t be viable in society, that someone won’t want to be with you, to love you, to marry you.
Alice: Well, and that message, and that fear, is transmitted by a teacher, who you think, and people think teachers know best, teachers are educators, they are the adults, in this situation, they’re educators though, for a child. To receive that message… for some people it could be really debilitating and traumatizing.
Anne: It was. I always feared would I be safe? And so, when I was in junior high my writing got worse and. I originally started carrying a laptop around, and the other kids got jealous… and one day they actually knocked the laptop out of my hands, and my laptop shattered to the ground and I was devastated, I knew it was expensive for my parents to buy that. That same year I had, this science teacher, I love science and I was really good at science. This teacher wouldn’t let me turn in typed notes because there were formulas for math problems or whatever and, so he made me handwrite out my essays.
And he couldn’t read them, so I was always getting back these horrible grades. And so one night I stayed up all night and carefully wrote out this essay and I turned it in. And he read, and afterwards I got an A plus, and he came back to me and he said it was not only the best essay that he in the class, but it was the best essay he’d ever gotten from a student. And I told him, I said you shouldn’t judge people based on their physical abilities. [It] was the first time where I asserted myself as someone with a disability. I didn’t know what I had. I didn’t have a notion of disability. I just knew that I was losing my ability to control my body.
On interactions with the healthcare system as a child with a disability
Anne: And in many ways having a disability has made me who I am. So, I actually ended up seeing doctors starting in Texas and then when we moved to Portland, Oregon. And I literally saw every pediatric specialist there was in Portland. And nobody could figure out what was wrong with me. And they had told my parents that it was psycho-somatic, that it was me seeking attention, that it was all in my head. And, you know, my mother was incredibly diligent in taking me from doctor to doctor and knowing something was wrong with me, meanwhile racking up thousands of dollars in medical bills.
And, you know, I constantly had to question myself as to whether I was doing this to my family, bankrupting my family and being somehow selfish. Because, you know, my physical body wasn’t working. And so, that really was a struggle. But it taught me a lot about the healthcare system so I literally understood how hospitals work, how different types of medical professionals worked. How the industry worked, and I saw my parents struggling with the medical bills and I would fall asleep with them fighting upstairs about how they would cover all these expenses. And I had promised myself that if I survived, I assumed that I would die of this, that I would change the healthcare industry for people with disabilities. So I never wanted anybody to go through what I went through.
Alice: I think that’s something that people that have disabilities as children they really grow up really fast and I think whether they see a lot of doctors or not, they have a much more clear view of the adults and decision makers around them.
It’s incredibly kind of you know, maturing process. You have to be [smarter]. You [see the impact of disability] within your family, you have your own sense of guilt, but you can see how you’re disability is causing stress and just for the fact that you’re existing in this world…You know, I’m saying the word burden.
Anne: Burden, yeah.
Alice: Because my dad actually told me a long time ago, and he didn’t mean it this way, he says, you are actually a burden.
Alice: And, and he meant it economically, and I knew that.
Anne: Yeah. But, you know? It’s, like, it was the truth.
On how the Americans with Disabilities Act shifted notions of disability
Anne: I knew that the power of a diagnosis got you access to services. And I think you know, that’s what so unique about the Americans with Disabilities Act, is that it changed the perception of disability…. So previously under different policies the idea was that the specific category conditions so in, for instance, in order to get social security benefits you have to have a specific diagnosis or go through rounds of tests and medical procedures, to get validated as being a true disabled person, but under the ADA the notion is, the issues is not within you it’s the barriers the social economic barriers and physical barriers that the built environment as what keeps people with disabilities from being able to participate in, remain in the community and so. The notion is, is that whether you have a disability or you are perceived as being disabled from a, maybe a physical attribute like a physical deformity you have a right not to be discriminated against.
On passing and having a somewhat invisible disability
Anne: So I have a form of muscular dystrophy called myasthenia gravis. And it usually affects people in there 50’s but I got sick, you know, very early. It’s an autoimmune disease. So your immune system, it attacks your ability to tell your nerve, to tell your muscle to contract. So sometimes, I can’t maybe breathe, or walk… but then other times I can seem perfectly normal, so I can kind of pass, as being non-disabled. And what I found to be the most lonely growing up was that I kinda didn’t fit into either world. So, the able-bodied world, I wasn’t clearly a part of that because of my physical struggles and an identity that was shaped by that…I wanted to come up to people with physical disabilities and be like I’m one of you.… Eventually I started working with the disability community. I found people would look at me trying to figure out if I was disabled, part of the community. So I started to disclose up front, and they’d kinda look at me like, are you really disabled? And so it was, I think really hard really work in order to gain trust.
It’s, it’s part of who I am. It’s shaped how I function in the world and, and it’s not so much my physical struggle that’s the issue. You know, I generally, I’m a healthy person. I have many aches and pains just like anybody else but everybody is gonna experience disability at some point in their lives. It’s just a natural progression of the human body and natural experience, human experience. But it’s the real problem is, the social-economic barriers, the social barriers that are really the problem.
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.