Logo of a orange colored ring and at the below the ring in dark blue text: Portlight Strategies, Inc.

Media Partner #94: Portlight Strategies, Inc.

Emergency preparedness is a major issue facing people with disabilities. We are glad to have Portlight Strategies, Inc. as our most recent media partner!

From their About page:

Portlight Strategies, Inc. is a 501(c)(3) organization, founded in 1997 to facilitate a variety of projects involving people with disabilities, including post-disaster relief work. Portlight’s longest running disaster recovery effort followed the devastation of Superstorm Sandy in the shore communities of New Jersey and parts of New York City, and lasted for 18 months. During that time, we replaced lost durable medical equipment and ramping, and assisted residents in purchasing and installing accessibility equipment that was made necessary after their homes were elevated to meet federal flood insurance requirements.

Through ongoing programs like our Getting It Right conferences, we are working to promote self-determination of needs and issues with respect to disaster preparedness and response. We foster community relationships with these agencies to promote inclusiveness in disaster preparedness and response plans and to demand provisions for transportation and shelter accessibility.

Website: http://www.portlight.org/home.html

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

Twitter: @PortlightRelief

3 cocentric circles, the 2 outer ones in black and the inner circle in red. On the right are the words: "Senior & Disability Action"

Media Partner #93: Senior and Disability Action

We’re excited to have another Bay Area organization as one of our media partners: Senior and Disability Action!

From their About page:

San Francisco Senior and Disability Action mobilizes and educates seniors and people with disabilities to fight for individual rights and social justice. Through individual support and collective action, we work together to create a city and world in which seniors and people with disabilities can live well and safely.

       Our Values:

    • Strive for social justice.
    • Work with excluded and marginalized communities.
    • Build a safe, inclusive, and loving community.
    • Respect and learn from the varied history of individuals and communities.
    • Challenge inequality, stigma, and all forms of oppression, within our organization and in society.
    • Be creative and have fun!


1360 Mission Street #400

San Francisco, CA 94103

(415) 546-1333

(On Mission St between 9th and 10th Streets)

Website: http://sdaction.org

Facebook: https://www.facebook.com/San-Francisco-Senior-and-Disability-Action-473061952727334/



Image of a white man with brown hair staring at the camera. He is wearing headphones.

Guest blog post: My Pigeon Chest Story by Sam Williamson

My name is Sam, and I have a condition called pectus carinatum. I call it ‘pigeon chest’, partly because that is what it looks like, and partly because it makes me feel better about my condition. Looking at me from a distance, you would be forgiven for thinking that I don’t have any disability whatsoever. But although my condition is not easily visible, it affects me both mentally and physically on a daily basis.

Essentially what I have is a chest deformity, where my chest bone sticks out further than it should. Now, I understand that to those of you suffering from disabilities that restrict you from carrying out major life activities, it sounds like I have it pretty easy. And I suppose I do have it pretty easy. I can still do most of the things that I want to do, even if it tends to hurt a little now and then. But, generally, it doesn’t stop me from doing anything physically. But mentally, it affects me every day.

It is the apparent mildness of my condition that is perhaps the most damaging aspect. On the surface, I come across as a very able human being who could do anything he wanted to. This often makes it harder for me to exclude myself from certain activities. Take for instance, a recent trip to the beach with some family. My cousins were confused as to why I didn’t want to go swimming. Although my condition doesn’t physically restrict me from swimming, mentally I would feel very uncomfortable taking my top off. My pigeon chest is very visible, and I have passed up countless opportunities to do fun and interesting things because of my weird chest. I’ve even passed up girlfriend offers (I’m not just saying that!). Basically, my chest rules me.

Fortunately, there are options I can take to beat this. Firstly, and the most popular method by far, is undergoing surgery. Don’t get me wrong, I’m not exactly rushing to the surgeon’s office to get my chest poked at (I’m pretty squeamish), but I can see why surgery is so popular amongst pigeon chest sufferers. It’s because there is a whole lot of false information out there. The first time I plucked up the courage to go and visit my doctor about my chest, I was met with a shrug of the shoulders and a recommendation to go under the knife. If it hadn’t been for the many hours I spent lurking on Internet forums and dodgy websites, I might well have paid for the surgery. But I knew there were other methods of beating pigeon chest, and it was these methods that I decided to pursue.

The first method was the use of a brace. The braces are designed to apply constant but gentle pressure to my chest, gradually reducing the amount that it sticks out. So far, so good. Except, I’m a guy. The idea of walking around wearing something that looks like a bra is not exactly my idea of perfect. And even though it is hardly visible under my t-shirt, for some reason I always have the thought that somebody will have a heart attack while I’m out. Then, as the only male in the vicinity, I will be asked to remove my shirt to give the victim a blanket, thus exposing my strange brace/man bra. These are the kinds of strange thoughts that I have on a daily basis. Maybe I should see a psychologist.

The second method involves performing exercises to try and strengthen your whole body, and correct the deformity. This is the method that I am having the most success with, although there has been a whole lot of trial and error involved. As soon as I read online that exercises could help my pigeon chest, I went to the gym the next day and jumped straight onto the bench press. Bad idea, it turns out. After spending the next 2 weeks with an ice pack pressed firmly against my chest, I planned a slightly less careless way of incorporating exercises into my daily routine. I decided to invest in some resistance bands, and I noticed some pretty immediate results. I quickly realized that by focusing on my back muscles I was drastically improving my posture, which in turn was improving my pigeon chest immensely. After plucking up the courage to go back to the gym, I continued to notice an improvement in my chest by utilizing chest bands, something I would have never believed I would be comfortable using.

The last method that I would like to cover is something that my family, my friends and even my doctor recommended to me; leave it alone. My initial response to this piece of advice was one of anger. How could they expect me to do nothing about something that was affecting me so much? But upon reflection, I began to realize that maybe this advice was wiser than I first thought. There was a point in my life when every waking minute was consumed by thoughts of my pigeon chest. I would plan ways to conceal it, to keep people from touching it and to get rid of it. But the reality was that very few people realized I even had the condition, and those that did know didn’t really care. It wasn’t a big deal to them; it was a big deal to me.

Although I haven’t overcome my pigeon chest, and I probably never will, I have learnt to deal with it. I can now talk about it openly (I would have never asked to write for Disability Visibility Project a few years ago) and even with a sense of pride. I know that pectus carinatum is not necessarily a common condition to have, but I hope that my experiences resonate with anybody who has to live with something that makes them feel different.


Sam Williamson is a pectus carinatum sufferer who enjoys talking openly about his condition. You can follow his pigeon chest adventures at:  http://pigeonchestproblems.com/

Horizontal logo. On the left is an graphic of a globe with an airplane circling it and a person in a wheelchair. In the center is: "WheelchairTravel.org Open Your World"

Media Partner #92: WheelchairTravel.org

Thank you to WheelchairTravel.org for encouraging their members to record stories about travel & disability!

From their About page:

WheelchairTravel.org was founded to open up the world of travel to people with disabilities. Destination guides report on the accessibility of public transportation, taxis, hotels, attractions, sights and more for many of the world’s most visited cities.

Resources for disabled travel and accessibility information are limited and typically unreliable. Everything that appears in the wheelchair travel guides on this website has been personally experienced by our founder/editor. From the seat of his wheelchair. WCT is committed to providing disabled travelers with the tools to access a city independently or with friends/family. It is possible to plan fully accessible vacations without spending a fortune. Let us help to open your world.

Website: http://wheelchairtravel.org

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

Twitter: @wctravelorg

Instagram:  @wheelchairtravel


Bright aqua blue background with text in black centered in the image: Disability Visibility Project & the Association of University Centers on Disabilities Twitter Chat Employment and Youth with Disabilities October 26, 2015, 4 pm Eastern @DisVisibility #NDEAMyouth #NDEAM2015

10/26 Twitter Chat: Employment and Youth with Disabilities

The Disability Visibility Project, in partnership with the Association of University Centers on Disabilities, will be hosting a Twitter chat on Monday, October 26, 4 pm Eastern/ 1 pm Eastern, Employment and Youth with Disabilities.

While focused on youth, people with disabilities of all ages are encouraged to participate and share their experiences!

Check out the live-stream: http://twubs.com/NDEAMyouth or #NDEAMyouth on Twitter

To participate:

Follow @DisVisibility on Twitter

Use the hashtags #NDEAMyouth #NDEAM2015 when you tweet

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: