Logo that reads "Breaking Silences" On the left hand side of the text are numerous intersecting circles in different colors. Each circle has a different image: the male and female symbols, two hands signing in American Sign Language, a stick figure with a cane, the image of a person's head and brain, an figure of a wheelchair user.

Media Partner #91: Sex and Disability Conference, Wright State University

We are proud to partner with the organizers of “Breaking Silences, Demanding Crip Justice: Sex, Sexuality, and Disability,” a conference taking place November 4-6, 2015 at Wright State University, Dayton, Ohio.

Background (from their website):

This conference represents a proud claiming of disability identity as a natural and normal human experience that enhances, rather than diminishes, one’s sexuality.

When asked anonymously about their “real” thoughts on disability, people generally describe disability as something that is abnormal, tragic, and to be pitied. Classified in this way, disability becomes something to treat, cure, or correct.  Furthermore, when curative measures are not possible, disability becomes something to tolerate, prevent, or eliminate.

When people are asked what they know or believe about sexuality and disability, they indicate that people with disabilities are asexual, cannot have sex, or should not have sex. Ableist beliefs such as these perpetuate a culture of silence and sexual oppression for the people with disabilities.

The DVP is especially excited that conference participants will be encouraged to use the StoryCorps app to record stories about sex and disability!!

Website: https://www.wright.edu/event/sex-disability-conference

Program schedule: https://www.wright.edu/sites/default/files/page/attachements/Breaking%20Silences%202015%20Program%20Schedule%20Week.pdf

A young white woman with brown hair wrapped in a blanket with her newborn baby in front of her.

Guest Blog Post: “Life On Hold” by Anne Cohen

Life On Hold

Anne Cohen

Depression is something that I had experienced before. I had sat with this companion briefly at different times in my life — the menace of doubt creeping over my shoulder, smothering my visions, my hopes, clouding the horizon of future aspirations. Growing up with a physical disability the crippling fact of life is fear. For me the fear was that I would not be safe in the world — a world that upholds beauty and progress as success. Success that often means a “full and active” life measured in terms that may not define who I was as a person with a disability. Would I be able to support myself and to find someone to love that would love me in return? As I grew older I found a sense of disability identity that redefined my notion of who I was in the world. I was proud of the person I had become and knew success was what I had defined for myself. Yet, a fear lingered in the back of my mind would depression one day halt my life.

I had always wanted a child and when I finally got pregnant at the age of 35 I thought I had adequately armed myself for what I feared might be a battle to physically cope with the pregnancy and to deal with the challenges of adjusting to motherhood. To my shock it was those I loved the most who I had to help adjust to the new baby.  I on the other hand, felt a sense of inner calm and bliss like I had never experienced before.   The fear I had experienced during life transitions I didn’t experience this time. Instead, I knew my purpose and felt confidence and a sense of happiness and love like I never imagined. My world was whole, complete and I wanted to cherish every moment in peace. That’s not what happened.

As the ambulance doors opened and I was being wheeled inside a flood of memories and emotions zipped through my mind. I couldn’t believe how I had gotten to this point. Why wasn’t I on the couch in my pajamas with my baby and my husband next to me smiling? “ Good luck,” the driver said as he closed the ambulance doors.   I took a deep breath knowing I would need to sound calm, and rational if I were ever going to get myself out of here. It was so hard, I was so scared and my chest already began to ache with the urge to feed my son. I wanted to scream and sob, give me my baby. I couldn’t, I knew it would only make things worse.   As I was wheeled into the psychiatric hospital I noticed two sides. One side the patience in the lobby had visitors, roaming the area, easily able to walkout through the sliding doors into the warm breeze of the beautiful summer day. The other side, the side I was being wheeled into, on the ambulance gurney, had heavy metal and glass doors, the driver pressed a button to have me buzzed in. It was what I feared I was being checked into the locked ward.   Health policy is my field so I was very aware I was being place on a forced psych hold. I knew I had some rights, but I was terrified. When would I get to go home? What would become of my son? What if they took him away from me?

Each state has laws on grounds for committing someone to a psychiatric institution against their will. In California it’s called a psychiatric hold or a 5150 for the section of the state law:

of the California Welfare and Institutions Code (specifically, the Lanterman–Petris–Short Act or “LPS”) which allows a qualified officer or clinician to involuntarily confine a person deemed to have a mental disorder that makes him or her a danger to self, a danger to others, and/or gravely disabled. A qualified officer, which includes any California peace officer, as well as any specifically designated county clinician, can request the confinement after signing a written declaration.

The doors slowly closed behind me. I was a new mom in jail. A friendly young woman greeted me and walked me into a small room and began the intake process.

“So do you know why you are here today,” the nurse asked.

“I was taken to the ER by a neighbor. They said the police had been called. My husband and the neighbor think I have post partum depression. I was in the ER the last 24 hours. Security was watching me sleep with the curtain open, I had to ask permission to use the toilet and to breast feed my baby. Please you have to believe me I am not depressed. My husband is. He has been acting strange ever since my son was born. He’s not sleeping, he’s angry. I think he is the one with post partum depression.” I said trying to explain what had happened simply and calmly as possible. Somehow if I was calm perhaps my explanation would somehow seem rational and I would be magically released and go home to my baby.

“Men can get depressed after a baby,” she said reassuringly.

“You believe me?!” I said hopefully as my voice trailed off.

“Yes, I do. Having a baby is difficult for both parents. Are you feeling anxious?   Do you have trouble sleeping? Do you want to harm yourself or your child? Do you hear voices?” She began the required psych screener. It didn’t matter if she was placating me, or actually believed me, it was clear I wasn’t going anywhere for at least the next 72 hours.

With the swipe of the ER doctor’s pen I was committed. A breast-feeding mom, snatched from her child, who was now being cared for by a Doula – the birth coach my husband originally want me to hire, a women who I barely knew, in the presences of my husband, who I had no idea what he was feeling.   Holding back my sorrow, anger and frustration, I calmly answered her questions.

“Do you know where your child is now.” She asked.   “Yes, he is with the woman that was suppose to be my birth Doula and my husband at our house. I called the Doula when I was in the ER. They made me find a third party to take care of my son or social services said he would be placed in foster care. Please let me go home I only live a few blocks from here. Please I need to breastfeed, I’m in pain.”   I calmly but urgently pleaded.   “I can’t do that,” the nurse said with a slight giggle. “But let me see if we can find you a breast pump, I have to call over to the main part of the hospital. Be patient though it’s late, it may take tell the morning.” She said as she took notes.

My son at that point was eating every hour and a half. I was already feeling engorged. I could feel the pain and panic in every part of my body at the thought of having to wait another hour, let alone tell morning. Then it occurred to me, oh god what about my son, he couldn’t wait either!   What if he didn’t accept a bottle? Could he die in the few days I was in here? He was only a few weeks old.   What if he didn’t want to breast feed after I was released?   I felt rage rise through my soul; they were putting my son’s health in danger and were robbing me of the most basic right as a mother. Breast milk was supposed to be the most beneficial and important during the first 6 months. If they were supposedly medical professionals why did they not understand this? If my child and I wanted to breastfeed how could they possibly separate us?

“Can I get you anything else to make you more comfortable?” She asked. “Yes, I’m starving I need to eat. I’m in pain, I had a c-section, I need Advil and Tylenol, I can’t tolerate pain medication. Speaking of medication…do I have to take any?”

I asked knowing that a 5150 meant possible medication and if I didn’t take it I would be seen as non-compliant and would possibly not be released within 72 hours. My stay could possibly be much longer; I wasn’t exactly sure how long they could hold me.   But I knew if I took psychiatric medication for any significant length of time I would have to stop breastfeeding altogether. I knew one of the few “therapeutic” things they believed they could do for me, besides counseling, was to “stabilize me” and that required medication to monitor. This was anything but therapeutic and they were potentially dismantling a new family.

In fact as my neighbor drove me to the ER, instead of the police, I told her angrily. “Do you know what you just did? I am going to be placed on a psyche hold and my son is going to foster care.” I wanted to scream at her and jump out of the car.   “Everything is going to be ok, you need help. Your depressed they will help you.” Trying to be as loving as possible she believed everything was going to be ok. She was a physician, she was following protocol, “do no harm.” I understood that she couldn’t sit back and do nothing, not when a child’s life was at stake. I tried to explain to her that I wasn’t depressed. Even though I had been crying and seemed scared. My husband was the one that was depressed. She didn’t believe me. She had talked to him and he showed no signs of the behavior I saw. He told everyone he could think of that I had post partum depression. I also confided in this same neighbor, so at that point it was a he said, she said, scenario. My neighbor told my husband to call a psychologist friend. The psychologists administered a screener, based on the answers my husband gave they flagged me as having post partum depression. The psychologist told my husband to call the hospital where I delivered my baby, the labor and delivery department following hospital protocol called the police. With one phrase, “post partum depression” without anyone trying other measures to help my family first, I was given a one-way trip, do not pass go, to the psych ward. A few phone calls, one over tired engineer husband, who didn’t understand what a woman goes through after she gives birth, resulted in me being place in essentially a plush jail.   With no trial or jury, as easily as that, my newborn child, who depended on me, the food I gave him, was taken away.

Finishing the screener the woman handed me a brochure on my legal rights during a 5150 hold. She explained that in the morning the doctor would meet with me and decide if I would require medication and I did have a legal right to refuse but I was here for at least 72 hours. The longest 72 hours of my life.

“Now let’s get you some food. I can’t administer medication at this hour, so I can’t get you an Advil and I won’t be able to get you the breast pump tell tomorrow,” the intake woman said as she opened the door.

For the next few days I got to know the other patience, their stories, we all talked about strategies to “comply,” how we would follow protocol, so we could be released. It was a haunting experience and a glimpse into how broken our mental health system is. I was fortunate I was in a well run facility, which I am sure was therapeutic for some people. But it was clear it was not therapeutic for a new mother.   If you are a mom and actually do have post partum depression the system is inadequately prepared to help you manage your depression and assist you in caring for your child.   Despite the Brook Shield’s book and related media attention on post partum depression over the last few years, we are still a system that at it’s best fails women and at it’s worst, such as in my case, can actually cause greater harm than good. Our current mental health system does not have a place where moms and babies can be together. Any help you do need on an outpatient basis you have to drag your exhausted self to “support groups,” or counseling sessions. Who wants to leave the house after the first few weeks after the birth of a baby? If you do manage to leave the house I think you at least deserve and massage, or a pedicure. That by far would have been a more therapeutic counseling session.

While my story may be an extreme case, I am not alone. The myth of new motherhood takes many women by surprise and the strength required to navigate this new role can be truly the most difficult thing anyone will go through.   The loneliness, fear and anger of why those around you simply don’t understand can make you feel hollow. It has forever changed me in ways that are both haunting and joyful. I hope my story will provide comfort to other women and guidance to a health and social welfare system that is inadequately prepared to deal with the needs of mothers, fathers and children in crisis.

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 andas a subject matter expert on a variety of committees for the National Quality Forum (NQF).   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



Logo that reads "Inland Empire Disabilities Collaborative www.iedisabiliiescollaborative.org" On the left hand side of the text is a square divided into four quadrants. In the four quadrants are images of the following: a stick figure with a cane, the image of a person's head and brain, an ear with lines indicating audio, an figure of a wheelchair user.

Media Partner #90: Inland Empire Disabilities Collaborative

Many thanks to the Inland Empire Disabilities Collaborative, our 89th media partner, for inviting the Disability Visibility Project to have a booth at the Inland Empire Disabilities Expo this past August!

From their About page:

We NETWORK to build cooperative relationships.

We promote ADVOCACY with and for people with disabilities.

We PARTNER to host events that benefit the community at large.

The Inland Empire Disabilities Collaborative is powered by a partnership between Inland Empire Health Plan (IEHP), PossAbilities of Loma Linda University, and Rolling Start, Inc.


Telephone: 909-890-5136

Email: info@iedisabilitiescollaborative.org

Mail: P.O. Box 1954, Rancho Cucamonga, CA 91729

Twitter: @InlandEmpireDC

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

Image of two people standing next to each other. On the left is an older white woman with long brown curly hair. She is wearing a red sweater. Next to her is a tall older Hispanic man wearing a brown leather jacket. He has white hair and eyeglasses. His hand is around her shoulder.

DVP Interview: Janni Lehrer-Stein and Tony Coelho

On July 16, 2015, Janni Lehrer-Stein interviewed Tony Coelho with the StoryCorps app for the Disability Visibility Project. Below are some condensed excerpts from their conversation. To listen to the entire interview (captions unavailable): https://storycorps.me/interviews/interview-with-tony-coelho-and-janni-lehrer-stein/

On becoming disabled and the stigma of epilepsy

Tony: I was 16 years old and I had an automobile accident. I hit my head on the windshield of a pick-up truck. I lived on a dairy farm and I flipped over in the canal. When I got out, I had a sore head… I didn’t think there was anything wrong. My dad got upset because I totaled the pickup but nothing happened for about a year.

A year later I was in a barn milking cows and I all of a sudden woke up and I was in bed in the house and the doctor was sitting on me. I couldn’t speak, I could hear and I didn’t know what happened. The doctors said, it’s all right, it’s alright, calm down. After it was over they said you had some type of spell but we’re not sure what it is. We’ll do some more work and find out what’s going on. I then went to several doctors. That particular doctor told my family it was epilepsy but my family wouldn’t tell me. I then went to two or three different doctors. They basically concluded the same thing and told my family but not me.

At that point I was about 17. They didn’t tell me, I didn’t know this until many years later, because they’re Portuguese and very Catholic. With their culture if you have epilepsy and you have seizures, you’re possessed by the devil and that God is trying to punish your family for something that somebody in the family did something wrong. My parent’s point of view is they were concerned about me but they were also concerned about themselves that if they had a child that was having seizures that meant that somebody did something wrong and that God was punishing our family. It wasn’t me that God was punishing, He was punishing me because of the family. My parents reacted to this. When the doctors all kept saying epilepsy then they took me to witch doctors. I went through three different witch doctors. Finally at the end it was a scary little thing because you would go into this room and they would turn off all the lights and put chains on the windows and burn candles, I didn’t have any trouble with that. It’s not the thing that as a 17 year old I was interested in so for the third one I finally said, “No. I don’t want to go anymore”. My mother was very upset with me. I said, “I just don’t believe and I’m not going to participate in this stuff.”

At that point I was in my senior year and I was student body president, class president, and very active. I was very close to my high school superintendent. I’d not been told about my epilepsy, just that I had passing out spells. My high school superintendent says to me, “You’ve got to get yourself out of town. You’ve got to get yourself away from this small rural community. You’ve got to get yourself out of town and you’ve got to go to Los Angeles, or someplace like that. Get away.” He pushed me hard. I kept having seizures not knowing they were seizures. I went to Loyola Marymount University. I continued to have my seizures but didn’t go to doctors or anything because I thought they were “normal”.

Then Kennedy got assassinated and I decided that I wanted to give up my life to public service of some kind…. In that whole decision making process I decided I wanted to become a Catholic priest… I decided to be a priest, sworn in by the president. It was a big thing. Everybody’s all excited and they announced it at the graduation ceremonies. Then I go to get my physical. The doctor says to me, “Have you ever had any passing out spells or headaches or something?” I said, “Yes, all the time for the past five years.” The doctor asked, “Has anyone ever told you you have epilepsy?” I said, “No, I don’t even know what the word is.” He explained to me what epilepsy was and he says you have it. I was thrilled because now I knew what I had, what was going on when I was having these spells. He gave me medication.

I called my parents and said, “I’m excited! I know what my problem is”. My mother’s response to me was, “No son of ours is going to have epilepsy. You are down there with a bunch of crazy people.” Immediately I knew there was problems with my family on epilepsy. I just said no. I struggled for a period of time. Got kicked out of seminary. My family rejected me when I was 20. I couldn’t get a job. I had all kinds of job offers because I was student body president but I couldn’t get a job with any of those people. I started drinking. I was drunk by noon everyday… I was on this hill and drinking everyday. One day I heard music. It was merry-go-round music. I had never heard it before. It was always there but I hadn’t heard it before…I looked at these kids and they were laughing and joyful. At that very moment something struck me. I said you’re going to be just like little kids. “You’re never going to amount to anything. Stop here.” I never plotted suicide since then. I’ve never let anybody get in my way of what I believe and myself and that’s what it’s all about. That experience became the reason why I got so involved in the disability program. With that experience and my family and the discrimination that took place, my church, and everything else.

On the global impact of the Americans with Disabilities Act and the UN Disabilities Treaty (a.k.a. Convention on the Rights of Persons with Disabilities)

Janni: With this incredible population around the world. Some people estimate that it is a billion strong of people with disabilities around the world and the incredible potential that is being offered through the International Disabilities Treaty and the ability to spread the spirit and the letter of the Americans with Disabilities Act around the world. What message do you have now to the American public and to our government in terms of how we can best make progress on this treaty?

Tony: We export a lot of things. We export some good things and some bad things. One of the things we’ve exported is our passion on disabilities and our leadership on disabilities. We’ve got the world in regards to recognition of what we as a disabled community can bring to the table. We’ve done that aggressively and openly… ADA was extremely humble to making other countries realize that we were really committed to making a difference.

When we then had to redo the ADA in regards to the Supreme Court decision, everybody realized that we as a government, we as a country, we as a people were committed to encourage people to participate and to provide the access and the opportunity for the people to participate. When we first offered the treaty and it came to within two votes of getting it. That was a very … I didn’t know what to do. I didn’t know if I should break down and cry. It was a very, very emotional negative thing for me. Bob Dole was on the house floor, great friend, and it was devastating to him. Basically, it was a slap in his face that the republican senators would vote against him. To me, I’m not a republican so I didn’t have that particular impact. I just was furious that Bob Dole would be insulted, that we as a community would be insulted. That it would do such damage to our reputation of a country and our commitment to people with disabilities. It has had a negative impact… I think the symbolism of that and our ability to help people that really need help in all parts of the world and we’re not willing to stand up and say so, it’s really one of the saddest moments I’ve had in my whole disability work. I think that we as Americans have got to tell the Senate that we want to do it and we have to understand as disabled Americans that we have a government that enforces more so now than we’ve ever had. There are people all over the world who don’t have those and they’re women, children who suffer tremendously because they don’t have any protection and we ignore them. It really disturbs me tremendously.

Janni: One future goal, then, for the disability community in America, the general community and something we can impress on our government is the need to ratify the International Disabilities Treaty and all those positive reasons that you’ve spoken about to do so.

Tony: Yeah. It doesn’t cost us any money. That isn’t what it’s all about. It’s aspiration, basically if we sign it we’re basically signalling to the rest of the world that we really are committing to it. We’re willing to help and everybody around the world in regards to it. Right now, because we haven’t signed the treaty, we can’t be in official delegations in the UN in regards to spreading the word on disabilities. It’s really a huge negative. We do need to get our people committed. What we really need is people of the disability community in the United States or wherever we are to aggressively go after our elected officials and say we want this. We want to make a difference not just the United States.

Tony Coelho

From Bender Consulting:

In 1978, Tony Coelho was elected to the U.S. House of Representatives from California’s Central Valley. He advanced quickly through the House Leadership ranks and served as Chairperson of the Democratic Congressional Campaign Committee from 1981 through 1986. Later Coelho became the first-ever elected Majority Whip from 1987 to 1989. As Majority Whip, Coelho secured the votes needed to pass the Democratic legislative agenda.

Mr. Coelho authored the Americans with Disabilities Act (ADA) during his time in the House of Representatives. This legislation provides people with disabilities equal access to employment, public facilities, and transportation and makes it possible for them to become a full participating member of society. The ADA is considered the most important piece of civil rights legislation in the past 30 years. During his ten years in the House, Coelho also served on the Agriculture, Interior and Administration Committees.

In 1999, Mr. Coelho returned to politics when Vice President Al Gore asked him to join his campaign as the General Chairman. Mr. Coelho was instrumental in refocusing the campaign, including relocating its headquarters to Nashville, Tennessee. Mr. Coelho’s leadership helped Vice President Gore get the Democratic nomination while winning every state primary and caucus. In June of 2000, Mr. Coelho resigned his position due to health concerns, but he continues to be a valuable advisor to the Vice President.

After leaving Congress in 1989, Mr. Coelho joined Wertheim Schroder & Company, Inc., an investment banking firm in New York. He served as Managing Director from 1989 to 1995, and from 1990 to 1995 he also served as President and CEO of Wertheim Schroder Investment Services. In 1995, Mr. Coelho formed ETC w/ TCI, an education and training technology company in Washington, DC, where he served as Chairman and Chief Executive Officer until it was sold in late 1997.

Mr. Coelho’s former and current business affiliations include service on a number corporate boards. He served as chairman and a director of ICF Kaiser International, Inc., and a director of AutoLend Group; Kaleidoscope Network, Inc.; LoanNet, LLC; and Pinnacle Global Group, Inc. He currently serves on the boards of Cadiz, Inc.; Cyberonics Inc.; DeFrancesco & Sons, Inc.; Kistler Aerospace Corporation; Ripplewood Holdings, LLC; and Service Corporation International. He also serves on the International Advisory Board of Fleishman Hillard, Inc. Today, Coelho serves on the Business Advisory Board of Bender Consulting Services, Inc. (Bender Consulting ). Bender Consulting is a firm that provides technology consulting services to its customers, and competitive employment opportunities for individuals with disabilities who are trained in the technology, finance/accounting and general business fields.

In addition to his work in the private sector, Mr. Coelho continues to devote much of his time to public service. He has served as Chairman of the President’s Committee on Employment of People with Disabilities from 1994 -2000. In 1995, he was a member of the Presidential Commission on the Roles and Capabilities of the United States Intelligence Community. In 1998, he was appointed as Vice Chair to the Presidential Task Force on Employment of Adults with Disabilities and as Co-Chair to the U.S. Census Monitoring Board. Mr. Coelho was also the U.S. Commissioner General to the 1998 World Exposition in Lisbon, Portugal.

In January 2004, Tony Coelho was elected to the Board of Directors of the American Board of Registration of Electroencephalographic and Evoked Potential Technologists. ABRET is a not-for-profit credentialing board for EEG, EP and Neurophysiologic Intraoperative Monitoring Technologists, and has been serving the neurology community and patients for more than 40 years. In addition to epilepsy, EEG and EP Technologists provide test data on disorders and conditions such as stroke, head trauma, infections and congenital defects.

A native of California, Mr. Coelho earned a Bachelor of Arts degree in Political Science in 1964 from Loyola Marymount University, where he served as Student Body President during his senior year. He began his career in 1965 as a Legislative Assistant to Congressman Bernie Sisk and served as Mr. Sisk’s Chief of Staff from 1971 to 1977 before being elected to the House upon Mr. Sisk’s retirement.

Janice ‘Janni’ Lehrer-Stein is a member of the Board of Directors of Medical Research Charities — a national federation of research focused non-profits, which solicits and directs employee donations to the Combined Federal and State Campaigns. She is a National Trustee of the Foundation Fighting Blindness and was Chair of the 2010 and 2011 Dining in the Dark dinner in San Francisco, which increased awareness about people with blindness and low vision. A board member of Disability Rights Advocates, a non-profit law firm working to improve access and secure the civil rights of individuals with disabilities, Lehrer-Stein holds a Juris Doctor degree from University of Toronto and a Bachelor of Arts degree from Yale. She was diagnosed with retinitis pigmentosa in 1982 and is legally blind. In her personal capacity she is involved with the DNC and Ready for Hillary!

For an interview with Janni Lehrer-Stein by Alice Wong for the Disability Visibility Project: http://disabilityvisibilityproject.com/2014/11/21/disability-visibility-project-janni-lehrer-stein-san-francisco-ca/

Part 2: http://disabilityvisibilityproject.com/2014/11/22/disability-visibility-project-janni-lehrer-stein-san-francisco-ca-2/




Drawing of a brain in indigo blue against a white background

Media Partner #89: Indigo Mind

The Disability Visibility Project welcomes Indigo Mind, our 89th media partner! Taking place September 26-November 5, 2015 and curated by Cara Levine + Arianne Gelardin, “Indigo Mind is an ambitious group exhibition celebrating the work of neurologist Dr. Oliver Sacks. Opening September 26 at StoreFrontLab, the project features artists who explore a range of brain and body phenomena examined in Sacks’ research. These works present the influence Sacks has had on our understanding of the human condition in its limitless variation and form.

Indigo Mind highlights distinct physical and neurological states, named after various publications written by Sacks: A Leg to Stand On, The Mind’s Eye, Seeing Voices, Hallucinations, An Anthropologist on Mars, and Migraine. Each week’s focus will feature artists working within these distinctions, inviting the public to engage in activities that shed light onto these unique experiences.”

On October 16th, the DVP, StoryCorps, and artists Jennifer Justice and Cara Levine will take part in a discussion, “Listen In: Stories from the Arts and Disability Communities.” Details here: http://www.storefrontlab.org/calendar/2015/10/16/pendingdisability-visibility-project-storycorps-talk

Check out the numerous events from Indigo Mind featuring artists with disabilities! For a complete schedule of events:


For more information about Indigo Mind:


Two men standing in front of a StoryCorps listening booth. The man on the left is younger with brown hair and brown eyes. The man on the right is older with glasses and a mustache. The arms of the second man are outstretched.

10/14 Chicago: DVP Listening Event

The Disability Visibility Project Listening Event

Wednesday, October 14, 2015

5 p.m. to 8 p.m.

Access Living

115 West Chicago Avenue, 4th Floor

Chicago, Illinois 6065

Join The Disability Visibility Project, StoryCorps, ADA 25 Chicago, and Access Living on October 14 for the Disability Visibility Project Listening Event. The event will be an opportunity to share stories, thank all those who participated in the Disability Visibility Project, and celebrate the Americans with Disabilities Act.

In 2015, in the spirit of the 25th Anniversary of the Americans with Disabilities Act, The Disability Visibility Project led by Alice Wong, partnered with StoryCorps to capture the experiences of the disability community.

Throughout the year, StoryCorps recorded stories from community members, friends, and families across the disability spectrum. This event will share a few of those stories and will offer time to celebrate disability power and community.

This event is free and open to the public. Light refreshments will be provided.

Sign Language Interpreters and Personal Assistants will be provided.

Please RSVP to garnold@accessliving.org

For questions about the event, please call 312-640-2199.

Image with a bright yellow background and centered text reads: Disability Visibility Project Twitter Chat September 15, 2015 5 pm Eastern/ 2 pm Pacific Emergency Preparedness & People with Disabilities @DisVisibility #Prep4PWDs #NatlPrep

9/15 Twitter Chat: Emergency Preparedness and People with Disabilities

In observance of National Preparedness Month, the Disability Visibility Project in partnership with the National Council on Disability will be conducting a Twitter chat about “Emergency Preparedness and People with Disabilities” on Tuesday, September 15, 2 pm Pacific/ 5 pm Eastern using the hashtags #Prep4PWDs and #NatlPrep.

  • To follow the conversation live, go to: http://twubs.com/Prep4PWDs/  or go to Twitter and search: #Prep4PWDs
  • Follow @DisVisibility on Twitter for updates
  • Use the hashtags #Prep4PWDs #NatlPrep when you tweet!

Feel free to share your stories, recommendations, and ideas on emergency preparedness anytime before or after the one-hour chat and keep the conversation going!

Image of two people facing each other in a recording booth with microphones in front of them. On the left is a middle-aged white woman with short red hair. She is wearing red-print shirt and blue jeans. On the right is an older white man with short brown hair. He is wearing a dark shirt with suspenders.

DVP Interview: Shannon Des Roches Rosa and Steve Silberman

Shannon Des Roches Rosa interviewed Steve Silberman, author of NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, on June 20, 2015 for the Disability Visibility Project at the San Francisco Public Library. Below are condensed excerpts from their conversation.

On the predominant narrative about autism

Steve: I started to develop the idea that there was a terrible problem in society, which was that the rise in diagnoses of autism in recent years — which was undeniable and striking — had never been adequately explained to parents in a way they could understand.

Clinicians would say things like,”Well, it’s broadened diagnostic criteria and better case finding.” But what does that kind of language mean to a young mother who is searching her two year old’s face for signs of eye contact?

Shannon: Yeah.

Steve: And I thought, this is a storytelling problem. The problem is that there’s one story that long time clinicians and researchers in the field understand, and there’s another story that parents understand, and the parents’ story is very compelling — the notion that pharmaceutical companies are poisoning a generation of children and covering it up and convincing journalists to assist in this massive global conspiracy. Is that a plausible story? Yes. Has it happened in the past? Yes. Have pharmaceutical companies covered up even massive fatalities caused by drugs that should of been taken off the market. Yes, yes, yes. It’s completely believable, but in this case, it’s wrong.

Shannon: Yeah.

Steve: And so I thought, somebody who can tell stories has got to go in there and try to make a big effort to tell a story that’s true and emotionally powerful, but it’s not this vaccine story.

On writing the book, Neurotribes: The Legacy of Autism and the Future of Neurodiversity

Shannon: So in the course of the five years of researching your book, what are some of the more unexpected and surprising things that you’ve uncovered?

Steve: When I was writing The Geek Syndrome, I stumbled across what is now called the neurodiversity movement, which was launched by autistic people who were tired of being described as puzzles and medical mysteries, and instead wanted to experience their lives as worthwhile, and beautiful, and valuable.

Shannon: And tell their own stories.

Steve: And tell their own story. Exactly. And so I thought that was very interesting. There were people who didn’t want to be described just by the deficits, the alleged deficits they have. So I knew, I just had this intuitive feeling that there was some kind of really interesting story there, even if I thought I couldn’t solve the mystery of why the number of diagnoses were going up. What I found, much to my surprise, was that the basic timeline of autism’s discovery — which is reiterated in thousands of textbooks and books and Wikipedia — was incorrect.

Shannon: Oh.

Steve: And that if you understood the basic timeline of autism’s discovery you would completely understand why the numbers have been going up so strikingly in recent decades.

Shannon: That’s important.

Steve: It wasn’t even hard to understand. Basically, no one had done the work of excavation required to understand the true story of autism’s discovery, and in order to do it, I had to do stuff like have documents translated from the German, and I looked in libraries all over the world for obscure papers, some of which were never even published, drafts of papers and stuff.

Shannon: Wow.

Steve: And once I started putting things together, I discovered the following, which was completely revolutionary. The story of autism’s discovery — as it is usually told — is that a child psychologist at Johns Hopkins hospital named Leo Kanner in 1943 wrote a paper about autism describing 11 of the young patients in his clinic.

And that is presented as the landmark discovery of autism. And a year later, this other guy in Vienna named Hans Asperger wrote this paper that’s considered merely a footnote to Kanner’s amazing discovery. And what everyone says is that: A, they were two completely independent discoveries, they were not aware of each other’s work. And B: that Kanner somehow never read Asperger’s paper. Like through the course of his whole career, he never read it. As I kept on with the research, that seemed really implausible. Why? Because people usually say, oh Kanner never read it because it was published in German. Well, German was Kanner’s native language.

Shannon: [LAUGH]

Steve: …Asperger’s article was published in this obscure German language neurological journal. Well actually Kanner references that journal like dozens of times in his other papers. So it was clear that Kanner certainly would have read it probably almost immediately when it was published in its original language.

Shannon: Got it.

Steve: Why did he not mention it? The biggest historical discovery in my book was that the man who worked in Asperger’s clinic, and helped Asperger develop his conception of autism, and was Asperger’s chief diagnostician — a man named Georg Frankl — had to flee Austria in the late 1930’s because that’s when the Nazis took over. He was able to flee Austria with the help of a psychiatrist in Baltimore named Leo Kanner, who brought him to John Hopkins, to run this children’s clinic.

Georg Frankl turns out to be the guy who diagnosed Kanner’s first three autistic patients. So Kanner was certainly aware of Asperger’s work through Frankl’s expertise in autism. He was depending on it. He sent his first three autistic patients — which he obviously did not know what to do with — to Frankl and this other person, Anni Weiss, who was another of Asperger’s core team in Vienna, was also in Baltimore at the same time because she had come to America and married Frankl.

And so Kanner literally had the best expertise from Asperger’s clinic in Johns Hopkins when he quote unquote, “discovered” autism. But the problem was that Kanner’s interpretation of autism was profoundly different from Asperger’s. Asperger and Frankl’s conception of autism was what we now call a spectrum — a very broad range of presentations, diverse manifestations, and colorful eccentricities.

Asperger conceived of autism as very common. He said that once you knew what to look for, you saw it everywhere. He also said that autistic people were already familiar to most people in world literature, in the pop culture archetypes of the absent minded professor and the socially awkward scientist.

He also knew that autism was a lifelong condition, because he followed some of his patients for ten years. He had seen more than 200 autistic kids in his practice over the course of a decade — which somehow everyone seems to overlook in his paper. Everyone ignores that. He only describes four kids in his 1944 paper but those kids were, I believe, composite portraits. He was just trying to create four perfect archetypes so that his fellow clinicians could recognize them when they walked in the clinic.

Future thinking about autism and disability

Shannon: So what kinds of changes in public understanding have you seen in the course of your time spent writing on this topic and along the same lines, what is your biggest hope for your book in terms of how it will influence public thinking and conversations about autism and disability?

Steve: Well, the one thing that has changed is that five years ago, when I started writing the book, I was really worried because the vaccine theory of autism causation was still very popular and I thought people would just think I was insane writing this book. But the anti-vaccine movement has really lost a lot of credibility in recent years because there have been so many outbreaks of communicable diseases that were practically eradicated in the late 20th century because of vaccines.

Earlier this year, there was the so-called Disneyland measles outbreak, and there have also been mumps outbreaks recently. And so people are noticing, wow, okay, people actually still get the measles and kids with impaired immune systems can die of the measles. So there’s this theory that vaccines cause autism which, by the way, has been disproven, debunked, discredited in many, many studies and meta-analyses.

It used to be that people like Jenny McCarthy were considered the voice of autism parenting: “Mommy Warriors.” But now, it’s actually people like you who I think are the real voice of autism parenting. And it turns out that parents like you have always been the compassionate, true voice of autism parenting, like the parents who started the National Society for Autistic Children. They had a very compassionate and positive attitude. What they were working for was changes in laws so that their kids could get an education, and those laws passed and generations of kids benefitted. And that whole tradition of demanding accommodations and changes to laws had been forgotten behind all the noise of the anti-vaccine movement.

What I hope is that people read my book and can come to an understanding of why the number of diagnoses has gone up so much in recent years. I want people to understand that autistic people have always been here and have been quietly making contributions to society that have made society better.

Shannon Des Roches Rosa is Senior Editor at Thinking Person’s Guide to Autism. She’s also a Shot@Life Champion, BlogHer contributing editor, writer, parent, geek, cheerful grump. Twitter: @shannonrosa

Steve Silberman has covered science and cultural affairs for WIRED and other national magazines for more than twenty years. His writing has appeared in The New YorkerTIME, Nature, and Salon. He lives in San Francisco. His new book is called Neurotribes: The Legacy of Autism and the Future of Neurodiversity. Twitter: @stevesilberman



Image of a group of people sitting in a conference room having a conversation on assistive technology

Integrating the disability perspective: assistive technology, design, hackathons & makeathons

On July 21, 2015 the Independent Living Resource Center of San Francisco (ILRCSF) and the Disability Visibility Project organized a Community Dialogue on Assistive Technology Needs of People with Disabilities.

We were delighted by the presence of people with disabilities who use assistive technology (AT), people with disabilities who use AT, are in the tech industry and/or have experiences with hackathons and makeathons, and people from various organizations and companies that work on assistive technology.

Image of Itai Dagan of Tikkun Olam Makers and Erin Lauridsen, Assistive Technology Educator, ILRCSF at a table during the meeting.

Image of Itai Dagan of Tikkun Olam Makers and Erin Lauridsen, Assistive Technology Educator, ILRCSF at a table during the meeting.

There was a high level of engagement and participation by everyone in the room and via Google hangout. Here are a few ideas and issues shared during the meeting. Big thanks to Liz Henry for transcribing the notes and Erin Lauridsen, Assistive Technology Educator at ILRCSF, for facilitating the meeting!

[Please note these are condensed summaries and not exact quotes]

Skills and expertise of people with disabilities

  • “We might have a disability and a need, and skill at tinkering, but no formal background, but because of that we have brilliant, thinking outside of the box, solutions.”

Input from people with disabilities at hackathons: at the outset, not at the last minute

  • One person tells story of a horrible experience at a hackathon where people were very excited to make a bluetooth device to open all the automatic doors in the world. However, no automatic doors use bluetooth. LOL. Great idea, open the door, but make sure first that you know the technology that’s currently used. At this particular hackathon, people also asked for her input with 3 hours left in the competition.
Image of a group of individuals at a large conference room having a discussion on assistive technology.

Image of a group of individuals at a large conference room having a discussion on assistive technology.

Process of developing and making new AT

  • Don’t underestimate the usefulness of things breaking. There’s value in things both breaking and failing. Fail fast, that’s good. In hardware hacking, break fast. When things break we learn where they’re weak. We learn where we need to make them stronger.

Ownership and knowledge production

  • Some participants voiced concerns that they will participate, give ideas, and then have to pay for the resulting products.
  • When we contribute to things that become proprietary and then those ideas go into a black hole, out of reach of users with disabilities.
  • Arie Meir from Google.org said everything in the makeathon itself is open source and goes online. Participants in the Google.org makeathon have to sign a document saying they can’t be the proprietor of a patent of something that happens during the makeathon.
  • Itai Dagan from Tikkun Olam Makers said they want to use funding to make a treasury online of designs and information so it becomes easily available to others.
Arie Meir of Google.org talking about the Google Impact Challenge and the importance of participation and consultation by people w/ disabilities at ILRCSF

Arie Meir of Google.org talking about the Google Impact Challenge and the importance of participation and consultation by people w/ disabilities at ILRCSF

On organizing successful events

For hackathons and makeathons that are 72 hours and 24/7…

  • Events need to be clear about accessibility so that the event will be successful and could work for people who are marginalized.
  • What will self care look like?
  • People with access needs may need help or maybe toughing it out is wrong idea
  • How do we participate without brutalizing our bodies for a ‘competition’?
  • Events might be free, but there are incidental costs like transportation, food.
  • How do you post information on sliding scale, dietary restrictions, accommodatons or financial help without stigmatiizing people?

For more information about the upcoming Bay Area Makeathon for Assistive Technology (September 11-13, 2015): http://www.tomglobal.org/bay-area-makeathon

Feel free to participate in survey on the assistive technology needs by the ILRCSF (Google doc): https://docs.google.com/forms/d/1sP85aB7RDnhXYFn3m8w5zxNdK5BJNM2krD5-0OZzDyo/viewform?c=0&w=1&fbzx=2952773239276616563 

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Media Partner #88: Lighthouse for the Blind and Visually Impaired, San Francisco

Thank you to the Lighthouse for the Blind and Visually Impaired of San Francisco for supporting the Disability Visibility Project since last year!

From their About page:

LightHouse for the Blind’s mission is to promote the equality and self-reliance of people who are blind or visually impaired through rehabilitation training, employment placement, Enchanted Hills Camp and other relevant services.

If you are in Northern California and have questions related to blindness or vision loss, you can reach us at: 1-415-694-7322, or info@lighthouse-sf.org, or visit us at 214 Van Ness Avenue, San Francisco. If we can’t answer your question, we will research until we find the information you need.

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

Twitter: @lighthouse_sf