Steve Lee: Growing up with a disability in Hong Kong

We want to thank comedian Steve Lee for sharing his story with the Disability Visibility Project!

Be sure to click on the CC button in the lower right corner of the YouTube window for closed captions.

Steve Lee is the only Asian Disabled Comic in America performing all over the USA and China, delights audiences both in the States and China (Hong Kong). His comedy blends humor from his disability and cultural roots to break barrier between people, quickly becoming one of the San Francisco Bay Area’s fastest rising comic gems.

He performed at Cobb’s Comedy Club, the Punchline SF, San Jose Improv, Purple Onion, Rooster T. Feathers,Tommy Ts, Takeout Comedy Club (Hong Kong), and many comedy clubs in both continents. He also opened for stand-up comedian/actor Brad Williams (TV show Mind of Mencia) at the San Jose Improv and stand-up comedian Brent Weinbach (winner of the Andy Kaufman Award at the HBO Comedy Festival) at the Herbst Theater.

Website: http://mycomedybook.com/steveleecomedy

Twitter: 

Facebook: https://www.facebook.com/steveleecomedy

Google+: https://plus.google.com/112583146770655558586/posts

YouTube: https://www.youtube.com/user/steveleecomedy/featured

On the left and right side are photos of older African American and white men and women holding signs that say: I Am Olmstead. In the center of the logo is black text reading, "I am Olmstead" against a white background.

Media Partner #70: I Am Olmstead, Atlanta, GA

There have been many projects before the Disability Visibility Project that records the stories of people with disabilities. The I Am Olmstead project has been recording stories with StoryCorps Atlanta by people with disabilities who have chosen to speak about their time in institutions or nursing facilities and their subsequent return to the community.

The I Am Olmstead project and OlmsteadRights.Org website is sponsored by Atlanta Legal Aid, the organization that successfully brought the historic case, Olmstead v. L.C., to the U.S. Supreme Court. From their About Us page:

We’ve created this website in collaboration with our partners and funders to be a place for everyone to learn about the Olmstead decision. We also share how the Olmstead decision has positively impacted the people’s lives in their own words through stories, photos, and videos. They have chosen to share their Olmstead stories with you and to declare, “I am Olmstead!” to spread the word about the greater opportunities for building lives of choice, meaning, and independence in the community thanks to the Olmstead decision. The website also provides resources and information for self-advocates, family and friends of people with disabilities, and legal advocates alike.

OlmsteadRights: http://www.olmsteadrights.org

I Am Olmstead: http://www.olmsteadrights.org/iamolmstead/

Facebook: https://www.facebook.com/OlmsteadRights

Twitter: @I_am_Olmstead

LinkedIn: http://www.linkedin.com/groups/Olmstead-Rights-6675303?home=&gid=6675303&trk=groups_guest_most_popular-h-logo

A man with brown hair and a beard sitting upright in a hospital bed. He is using a ventilator.

Guest blog post: Lucky Unit 13 by Nick Dupree

Nick Dupree is a blogger and artist who happens to love bunnies (we love bunnies too at the DVP). From his website:

I’m Nick, a 32 year-old disability rights and Medicaid reform activist, who has been advocating for ending the institutional bias and other long-term care reforms for years. I fight especially hard for awareness and action on issues that affect those of us who, like me, have complex care needs and are vent-dependent. We are a vulnerable population that spans multiple diagnoses and every age group, and, in order to stay in our homes and communities, we need change in long-term care.

As someone who lived in an institution called Coler-Goldwater because of his disability-related needs, Nick recently posted a collection of stories about his past experience. FYI, Nick now lives in the community.

Here is an excerpt from a blog post originally written on March 3, 2009:

Lucky Unit 13 (Long Essay on Institutional Living)

Nick Dupree

Because Medicaid makes getting on home care waivers ridiculously complex and difficult, whereas institutionalization is easily funded, I ended up here, at a city rehab hospital while I wait for home care to be set up for me in Manhattan.  This is my waiting period.

Institutionalization, the most costly, elaborate and inconvenient option, is the easiest to get (in Medicaid law) because the 1965 Medicaid statute hasn’t been updated since technology advanced to allow severely disabled people to live at home.  The best, newer services (home care) are a long road to get to, whereas they’ll happily give you an express ticket to the most difficult, costliest, dinosaur services (institutionalization).  THE SYSTEM IS BACKWARDS, in an almost Lewis Carroll kind of way.  I’m wondering why “fiscal conservatives” would rather keep me in a gillion dollars/day hospital instead of home care for half that.

So for now, I’m living on an island designed for the reform of 19th century plug uglies, in what I’ll call the “Alcatraz Institute for the Permanently Crippled,” in unit A13, until I get home care.

Ah, lucky unit 13, an alternate world within this alternate island universe.

Me in my room on unit A13.

For the entire blog post: http://www.nickscrusade.org/lucky-unit-13-long-essay-on-institutional-living/


 

To read the entire collection from his time at Coler-Goldwater: http://www.nickscrusade.org/coler-chronicles-collected-bloggings-of-institutionalization/

For more about Nick Dupree: http://www.nickscrusade.org/about/

Website: http://www.nickscrusade.org

Twitter: @NickDupree

Logo of the Shepherd Center. A blue circle with yellow hands with a white figure in the middle. The words in blue text against white background says, Shepherd Center

Media Partner #69: Shepherd Center, Atlanta, GA

From Shepherd Center’s About Us page:

Shepherd Center, located in Atlanta, Georgia, is a private, not-for-profit hospital specializing in medical treatment, research and rehabilitation for people with spinal cord injury and brain injury.

Founded in 1975, Shepherd Center is ranked by U.S. News & World Report among the top 10 rehabilitation hospitals in the nation.

Shepherd Center is a 152-bed facility. Last year Shepherd had 992 admissions to its spine and brain inpatient programs and 571 to its day patient programs. In addition, Shepherd sees more than 7,600 people annually on an outpatient basis.

Patients at Shepherd Center get more than just medical care; they get an experience that brings healing and hope. Shepherd takes a team approach to rehabilitation. We understand that patients are going through more than just recovery from an injury; they are learning a new way of life.

Shepherd Center

Website: http://www.shepherd.org

Facebook: https://www.facebook.com/shepherdcenter

LinkedIn: http://www.linkedin.com/company/shepherd-center

YouTube: http://www.youtube.com/user/ShepherdCenter

Twitter: @ShepherdCenter

Instagram: http://instagram.com/shepherdcenter

On the left is a white woman with long blonde-brown hair wearing an orange tank top. She is sitting at a table across from an Asian American woman in a wheelchair. She is wearing glasses and wearing a black hoodie. There are microphones on the table and they are having a conversation.

Disability Visibility Project: Anne Cohen, Part One

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

http://www.disabilityhealthaccess.com

LinkedIn

http://www.linkedin.com/pub/anne-cohen/7/28a/945


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.

Twitter: @SFdirewolf

LinkedIn: http://www.linkedin.com/pub/alice-wong/65/7b4/441

Logo for Shared Abilities. A large blue circle with an aqua blue arc below the circle as if it s a person's arms outstretched

Media Partner #68: Shared Abilities

From Shared Abilities’ About Us page:

Shared Abilities LLC was founded by a mother of a child with special needs, in 2011.  She was touched by the experience of sitting poolside during aquatherapy sessions for her child with other parents and caregivers.  She learned that valuable information could be SHARED, no matter the age or diagnosis of the person with special needs.  And precious support could be given; support celebrating all that we all ABLE to accomplish.

After searching the internet for a similar sense of community and not finding it, she decided to create Shared Abilities.

We hope you enjoy this site and find that we can all benefit from sharing information, whether it is about therapies, nutrition, education, parenting, family related concerns, and much more.

 

A group of diverse individuals in age, gender and ethnicity. They are all smiling and waving their hands in the air.Website: http://www.sharedabilities.com

Facebook: https://www.facebook.com/SharedAbilities

Twitter: @SharedAbilities

Asian American woman on the left side in a wheelchair, she is wearing glasses and wearing a black hoodie. On her right is a white woman with long blonde-brown hair wearing an orange tank top. Both are smiling at the camera.

Disability Visibility Project: Anne Cohen, Part One

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.

Anne: Yeah.

Alice: And, and he meant it economically, and I knew that.

Anne: Yeah. But, you know? It’s, like, it was the truth.

Alice: Yeah.

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

http://www.disabilityhealthaccess.com

LinkedIn

http://www.linkedin.com/pub/anne-cohen/7/28a/945


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.

Twitter: @SFdirewolf

LinkedIn: http://www.linkedin.com/pub/alice-wong/65/7b4/441

A South Asian woman in a pink shirt using sign language. A caption below the photo reads: "I'm going to tell you about my first days here in America."

Deaf South Asian Americans: Smita’s First Days

The Disability Visibility Project loves it when people reach out to us and share their projects on disability history. Sarika D. Metha is a Producer for APA Compass on KBOO 90.7 FM, specializing in issues concerning race, ethnicity, and culture. She has a Bilingual/ELL Education, Deaf Studies, Early Intervention, etc. Sarika spent a decade serving linguistic minority communities, internationally in Costa Rica and India and domestically in Chicago, Champaign, SF Bay Area, Washington, DC and now, Portland.

Sarika has been documenting the stories of Deaf South Asian Americans. How cool is that?!?

Here is one story: Smita’s First Days in America 

August 10, 2013

Smita Kothari was born and brought up in Mumbai, India. She finished her college degrees in Business and in Education in India, never having had interpreters. Smita moved here two years ago after getting married, and has fantastic stories in comparing how mainstream society regards her, as a deaf Indian American woman, both in India and in the US. You can learn more about Smita in this video.

This is another video in a series of stories I’m collecting, documenting the experiences of the Deaf South Asian American community in Washington, DC. These stories are a part of the permanent collection with the South Asian American Digital Archive (SAADA). While these interviews do not represent the entire community, they certainly offer some insight.

This story is part of SAADA’s project launch, “First Days” in which South Asian Americans describe their unforgettable experiences upon arriving and settling in the US.

In this video, Smita talks about her first days and first impressions, landing in the United States to a land full of cars, closed doors and empty roads, and meeting her in-laws in upstate New York.

The entire post is here:

http://sarikadmehta.com/2013/08/10/deaf-south-asian-americans-smitas-first-days-in-america/


 

Sarika D. Mehta

Website: http://sarikadmehta.com

Check out all the videos of Deaf South Asian Americans: http://sarikadmehta.com/category/video/

Picture of a white woman with long blond hair held back with a headband. She is wearing glasses.

Media Partner #67: Michelle Sutton, Australia

We have our first media partner from Australia, Michelle Sutton!

Michelle Sutton is an Australian blogger and activist, with a background in education and psychology. Michelle is part of a neurodiverse family- she is wife to a Bipolar husband and mother of 6, one Bipolar and two Autistic- and takes joy in all the unique characteristics represented in them all.

Michelle does not see Autism or Bipolar as disorders needing to be fixed or cured, but as variations in the wide spectrum that is normal human neurology. She believes that everyone is entitled to equal opportunities for success and the way to achieve this is to find out what kind of support is needed for each kind of normal in her household and to provide it.

Orange background with the words: Different Kinds of Normal.

Blog: http://differentkindsofnormal.blogspot.com.au

Facebook: https://www.facebook.com/differentkindsofnormal

 

Logo of a white bird against a blue sky and green background. Text says: Marin Center for Independent Living

Media Partner #66: Marin Center for Independent Living

The Marin Center for Independent Living promotes the independence of people with all types of disabilities of all ages in Marin County, California. Their mission is:

“To assist persons with all types of disabilities to achieve their maximum level of sustainable independence as contributing, responsible and equal participants in society.”

Website: http://www.marincil.org

Facebook: https://www.facebook.com/MarinCenterforIndependentLiving?fref=ts

Twitter: @MarinCIL