• Tag Archives DisabledProud
  • The 5 Leaders Continuing the Legacy Ed Roberts Started

    Who is keeping Independent Living connected to what matters today?

    Photo of disability activists in the 1970s - Judy Heumann, Ed Roberts, and others in wheelchairs.

    Thanks to Ed Roberts’ work, Independent Living as we know it has evolved into a program, a movement, and a culture. We have chosen to highlight 5 disabled leaders who are shaping what Independent Living is today.

    The Independent Living Movement is founded in the belief that people with disabilities, regardless of the form, have a common history and a shared struggle, that we are a community and a culture that will advance further banded together politically.

    About Independent Living
    National Council on Independent Living

    Judith “Judy” Heumann 
    Ed Roberts asked Judy to move to California to work for the Center for Independent Living where she served as the deputy director from 1975 to 1982. She was an early adapter of the Independent Living Movement.  
    She was responsible for the implementation of legislation at the national level for programs in special education, disability research, vocational rehabilitation and independent living, serving more than 8 million youth and adults with disabilities.  
    Today, Judy continues to advance the human rights of disabled people around the world through her online presence, The Heumann Perspective. This new project is intended to broaden and spur discussions on the intersectionality of disability rights.
    Learn more: https://rootedinrights.org/spotlight-on-disability-rights-advocate-judy-heumann/

    Victor Santiago Pineda, PhD
    Dr. Victor Pineda is a “serial social impact entrepreneur”, globally-recognized human rights expert, and leading scholar on inclusive and accessible smart cities. He is a two-time presidential appointee, and serves as the president and founder of Pineda Foundation / World ENABLED, and co-founder the film production company Windmills & Giants
    Dr. Pineda is highly sought after speaker and senior advisor to governments and fortune 500 companies on innovation, resilience and inclusive design. Dr. Pineda has a proven track record of conceptualizing and executing transformative projects with global companies around the world. He supported the drafting of local and national regulatory frameworks such as the Dubai Disability Strategy, and helped negotiate international agreements including the UN Sustainable Development Goals, the UN Habitat’s New Urban Agenda, and United Nations Convention on the Rights of Persons with Disabilities. 
    Learn more: https://www.respectability.org/2017/12/dr-victor-santiago-pineda-senior-advisor/

    Alice Wong
    Alice Wong is disability activist, media producer, and a consultant who proudly identifies as Asian American and disabled.
    She is the founder and Project Coordinator of the Disability Visibility Project, a project collecting oral histories of people with disabilities in the United States that is being run in coordination with StoryCorps. The Disability Visibility Project was created on the 25th anniversary of the Americans with Disabilities Act of 1990. As of 2018, the project had collected approximately 140 oral histories.
    Her online presence through Twitter chats have gained the attention of the entire country using #CripTheVote, a nonpartisan online movement encouraging the political participation of disabled people. She recently hosted a Twitter chats with Democratic Candidates Senator Elizabeth Warren and Mayor Pete Buttigieg and is showing no signs of stopping!
    Learn more: https://disabilityvisibilityproject.com/about/

    Photo of a black man wearing a black tee shirt that reads 40th Year Celebration with a photo of a Black Panther demonstration. behind him is a slide with a photo of him as a youth and a photo of himself currently. Text: Black Disabled Art History 2020- Leroy F. Moore, Jr.

    Leroy F. Moore, Jr
    Leroy F. Moore, Jr. is the founder of the Krip-Hop Nation project and co-founder of Sins Invalid. Blogger BillyJam said that he “personified Independent Living” as someone who writes, lectures, and performs about the intersections of race and disability issues both in the United States and abroad.
    Leroy’s lecture series, “On the Outskirts: Race & Disability,” grew from his experiences with the black disability movement in London. Krip-Hop emerged from his interest in black musicians marginalized because of their disabilities.

    “The mission of Krip-Hop Project is to get the musical talents of hip-hop artists with disabilities into the hands of media outlets, educators, hip-hop, disabled and race scholars, youth, hip-hop conference coordinators, and agents and to report the latest news about musicians with disabilities.”

    Leroy F. Moore, Jr.

    Currently Leroy serves as the Chair of the Black Disability Studies Committee for the National Black Disability Coalition. He co-authored a children’s book called Black Disabled Art History 101.
    Learn more: https://www.deafpoetssociety.com/leroy-moore.

    Closeup photo of a Portuguese man wearing a suit and tie, smiling.

    Joe Xavier
    Just like Ed Roberts from 1976-1983, Joe Xavier is the Director of the Department of Rehabilitation (DOR).
    “I started as a supervisor over our Business Enterprises Services Field Office. Followed by four years as an auditor, if not the only, one of the first blind Auditors in the State of California. Then, three years as a Section Chief of our Business Services Section. And, the last six-plus years in an Executive capacity with the Department including Independent Living, the Specialized Services Division, and today the Director of the Department.”
    As Deputy Director, Joe had direct executive responsibility for Blind Field Services, the Orientation Center for the Blind, the Older Individuals who are Blind Program, the Deaf and Hard of Hearing Section, the Business Enterprises Program, the Independent Living Unit, the Assistive Technology Unit, the Disability Access Section, the Client Assistance Program, the Public Affairs Office and the Traumatic Brain Injury Program. 
    Learn more: http://www.allgov.com/usa/ca/news/appointments-and-resignations/director-of-the-department-of-rehabilitation-who-is-joe-xavier-140314?news=852677

  • Cross-Cultural Disability

    By: Kameron Bryn

    I grew up in the fourth biggest city in Norway, Stavanger, which has a population approximately twice that of Redlands, California. The entire country’s population is around the size of San Bernardino. Norway is associated with democratic socialism, free healthcare, winter sports, oil, and fish. This is where I spent the first decade and a half of my life. “Why would you move here?” is something I hear a lot. In theory, Norway is the better place for someone with my condition: free healthcare, excellent social security, liberal laws, etc. And, while that is all true, it’s only half of the picture.

    When I was 16, I moved to Redwood City, California—warm weather, excellent healthcare, diverse culture and population, friendly people, and a large LGBTQ+ population. The perfect escape from a cold and frigid Norway, and yet, it did little to ease my suffering.

    In May 2014, I started suffering from chronic headaches and fatigue and was diagnosed with anemia. However, being the smart cookie that I am, I decided to not take my iron supplements as they caused even worse headaches and nausea. This led to a complete iron depletion in October. My entire body stopped functioning, I was hot all the time, I couldn’t think, and I barely had enough energy to move. I was a mess. I started on the iron tablets again, and while it helped a lot with the fatigue, I started experiencing aches. First once or twice a day, then several times a day, and then non-stop. My sister recognized it as Fibromyalgia. I was diagnosed in the spring of 2016. It was a long and harrowing journey.

    Black and white photo. Young, Caucasian male standing against a wall

    Fibromyalgia is an old person’s disease. I’m chock-full of those. I got diagnosed with arthritis this summer at 19, and low tear production at nine. I was always too young. I often wondered if there were ways it could’ve been prevented. At my eighth birthday party, I was playing in a play-house and I suddenly I felt as though I couldn’t breathe. I was lying on my back, gasping for air. I had fits of nausea throughout my entire childhood. I got headaches frequently; it felt like tiny men doing construction inside my head. But these were things to ignore. That’s the Norwegian way—to ignore. Even when we went to the family physician, he seemed to have a hard time believing me. When my sister suspected fibromyalgia, it was dismissed. “I don’t want to diagnose you with that”. I was sent to psychiatry, and they confirmed it wasn’t psychosomatic, but he still refused to do more tests on me. There were reports of Norwegian teenagers who were put into induced comas due to paralyzing pain from over-exertion. Before my iron-depletion, I was in the rigorous International Baccalaureate (IB) Middle Years Program , choir, Model United Nations and fencing twice a week. Pain is something to be ignored.

    My (undiagnosed) fibromyalgia made it so I only barely graduated from Middle Years Programme (MYP ), and my mother took me to see specialists. As specialists aren’t covered in free healthcare, it cost a couple hundred dollars for each test they did. The treatments were just as limited as their knowledge. They agreed that even though it’s likely that I have fibromyalgia, the diagnosis wouldn’t help much as the treatment would be the same, either with specialists or be put on a waitlist for one to three years for treatment by public healthcare. Stavanger is one of the best places to have a heart attack. Chronic illness? Not so much. Fall 2015 I started treatment at the Pain Clinic at Stanford Medical Center. They still refused to give me a proper diagnosis, but I was being seen by a psychologist, physical therapist, psychiatrist and acupuncturist. The treatment helped, but school… was a nightmare. I was doing the same IB program at the American public high school I went to, but IB at that school was IB on top of regular school. I left the IB program within the month. I was still very ill, and the concept of doing six hours of homework every night on top of eight hours of school didn’t agree with my fibromyalgia. I asked for accommodations, but the only thing they could grant me was homework extensions and a permanent hall pass.

    That didn’t make much difference when I could barely get out of bed. After three months of brick and mortar, I unofficially dropped out. I transferred to an online school, but there was still a requirement of nine hours of schoolwork per day. No one had told me the American Dream translated to ‘grind until you die’.

    I unofficially dropped out of online school in the spring and then studied hard and tested out of high school in the fall. Just in time to move to Southern California as there was nothing left for me in the Bay Area. My sister was attending the University of Redlands and was my greatest support system at the time, and it was great to be with her again. I spent the next year in limbo, trying to figure out what I could possibly do in my current state in a country that didn’t seem to want me, from a country that didn’t seem to want to help me.

    I have since paved my own path and worked with people who did want me and did want to help me. I think a lot about my two cultures and how they’re ingrained in my DNA and psyche, as much as I try to withdraw from them. I take no pride in them, but I have great interest in them—in how they shaped me, and how they treated me, and people like me. How they helped me and how they hurt me; how my experiences are unique and how they are universal.