Jamal is ranked #1 in the US Paralympic 100 Free and number 22 in the world!
He became paralyzed after catching the flu as a young boy. At only 10 years old, Jamal was diagnosed with Charcot-Marie-Tooth (CMT) – an inherited condition of the nervous system that can result in loss of muscle tissue and touch sensation in the body. (He calls his journey, “From paralysis to Paralympic Champion.”)
Jamal developed a love for swimming through a local YMCA “Mommy & Me” swim class.
His brand, ‘Swim Up Hill’ has a mission to teach one million people to swim, and to “inspire millions more through community impact and tech integration”.
Jamal’s other interests include being a swim coach, picnics, audio books, and surfing.
Who is keeping Independent Living connected to what matters today?
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.
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/
In 2015, Alice was the first person to visit the White House and the President by robot presence!
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/
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.”
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
Although this country has been divided by different political views over the last few years, I am most certain that Americans can all agree on one thing: Human beings should not be treated unfairly and inhumanely.
Many of those coming to our country are leaving everything behind—their families, their homeland, their culture, their lives. Seeking a better life, for one’s self or family, should not subject a human being to torturous conditions lacking basic human rights.
Unfair Treatment of People at the Borders
There has been an increase in the detention of immigrants and asylum seekers at our borders, including people with disabilities. Not only are people being held in harsh conditions, the detainees (people being held or detained), are also suffering from a lack of medical attention needed to maintain healthy well-being.
Open packaged raw meat and food items leaking blood, not relabeled and dated, observed by OIG at the Essex facility on July 24, 2018 (left); food not properly labeled or stored at LaSalle facility on August 7, 2018 (center); and unlabeled food with no description or date at Aurora facility on November 6, 2018 (right). Source: OIG
“Significant food safety issues” – spoiled food that puts detainees at risk for illnesses that can be spread in food
Moldy, broken-down bathrooms in detainee housing units
“Overly restrictive segregation”
Detainees were separated without providing proper time outside cells (only 3 days per week) One facility allowed only non-contact visits, despite being able to accommodate in-person visitation.
Nooses found in detainee cells
Not enough medical care (or none at all)
Unreported security incidents
General population outdoor recreation yard shared by two 80-person dorm modules with partially covered roof. Observed by OIG at the Aurora facility on November 6, 2018 (left). Also, as observed by OIG at the Essex facility on July 24, 2018, mesh cages were added to glass enclosures inside housing areas to provide “outdoor” recreation for detainees (right). Source: OIG Red placard indicating disciplinary segregation detainees must be moved in restraints at all times, compared to administrative segregation placard indicating social time approved. Observed by OIG at the Aurora facility on November 6, 2018. Source: OIG
Immigrant Children with Disabilities Separated from Families
South Texas Border – U.S. Customs and Border Protection providing assistance to unaccompanied immigrant children after they have crossed the border into the United States. Photo provided by: Hector Silva
In California, there are nine facilities that contract with the Office of Refugee Resettlement (ORR) to house immigrant children separated from their parent or guardian. DRC shares numerous problems with the treatment of children with disabilities:
ORR does not provide children in its care with appropriate and necessary special education services.
Eighty-one percent (81%) of immigrant children had been detained at the facility due to self-harming behavior, behavioral problems, or mental health diagnoses.
Detained immigrant children are not given the health care services they are eligible for.
There is no regulatory guidance or oversight (watchful and responsible care) to ensure that immigrant children, particularly those with disabilities, receive the supports and services they need.
They say school is supposed to prepare you for
life, even for a job. But going to school, and going to a job, are different
I got my first job as a cashier at Rice Lovers
right out of high school.
Not Like High School
At first, I was used to the structure and
rules of school. I still thought you had to ask to go to the bathroom. So, I
would be waiting for my boss or the manager to walk by, to ask to go to the
bathroom. Most of the time, they just said “yes”.
Until one day, one of them said, “You’re an adult now, you don’t need permission, just go”.
That sentence kind of blew my mind, because
even though in the rest of the world this was true: I don’t need permission to
go to the bathroom in my own house (most of the time), or at Target, but when
surrounded by authority figures, in a routine structure, I thought you always
needed permission no matter how old you are. However, that is not the case and
you don’t need permission to do every little thing at work. In fact, your boss
isn’t going to be around you most of the time to even do that.
Figuring It Out on My Own
In school, you get a schedule on when your
classes would be, where, and a syllabus of what you will be doing in those
classes. Everything you have to do is chosen for you down to the letter.
Which got me completely lost on what I should do first in the job. Should I be counting the receipts right now? Should I be arranging menus? Should I be taking orders? Do I give these people beverages now, or wait for their waiter?
I knew a handful of the things I should be
doing but got lost on the order of when I should do them. And when there was
nothing left to do, with no customers, I felt guilty for standing there waiting
for something to do. Every minute should be spent working, but I didn’t know
what to do except wait for the next phone call or customer.
This is very similar to school actually,
except nobody teaches you, you have to just know it. Usually, at school you are
taught information that will be on the test, you study for it, and see what
grade you get.
At work, if you work in a restaurant, you need
to memorize the entire menu, and “table numbers” in a week. You just have to
take the menu with you, as well as the outline of tables with numbers, to study
for it yourself. I was particularly bad at this, because I couldn’t memorize
everything in 7 days, and my mind worked differently from paper to tables. On
paper I knew where the numbers were for each table, but in 3D I got a lot of
things backwards, or just outright wrong, or forgotten altogether.
And at work, you don’t get a bad grade, you
just get fired.
At school, you’re not allowed to use the
phones at all. Teachers had to call others; nurses called your parents if
something was wrong. Although I did have a cell phone, I prefer texting than
calling because I feel like I communicate better at writing than speaking. So,
I had no idea that I had phone anxiety. Until my first job.
Picking up the phone was something I did as a
cashier a LOT, to fill in pick up orders most of the time. It also meant I had
to know all the meals in a snap. The pressure of talking to a stranger, while
trying to remember the menu, and putting in an order on this weird computer
while I barely knew how to work a regular one at the time, put me in a lot of
anxiety. There were people who would yell at me through the phone, or I would
get the flavor of the chicken wrong, just all kinds of things. My main concern
a lot of the times was fearing a customer was going to hit me if they got mad,
but that never happened. It just made answering the phone a lot harder, and
keeping up with conversation without wanting to shut down.
Being a cashier, you would think I know how to
handle money. Only a tiny bit. To this day, I don’t quite know how to count
money. “Why would you put yourself down to be a cashier then?” You ask. Because
I was told to apply for any jobs available, regardless if I thought I could do
them or not. Here is my advice on that: DON’T do that. Apply to jobs you know
you can do, or at least learn quickly how to.
Ironically, I actually didn’t have to do much
money exchange being a cashier, my job mostly consisted of answering the phone,
filling in pick up orders, counting receipts, and filling beverages. However,
the little money exchange I did do, was difficult for me to the point my boss
asked me a math question on the spot and scoffed when I couldn’t say the answer
Learn from my mistakes, boys and girls:
Apply for jobs you *know* you can
Go to the bathroom whenever you
need to go
Do your work routine in whatever
way is most productive for you
Answer your cell phone more often
And be sure to study and memorize
things just like in school
Harmony is a YO! Volunteer at the Dayle
McIntosh Center (DMC) in Anaheim. Harmony shows his passion for disability
rights and the youth voice by co-facilitating DMC’s Youth Connect Advocacy
group and participates in the Youth Advisory Committee.
“I take risks by acting out of love & a framework of intersectionality. I listen, I speak up, I show up, I am vulnerable & I dream. I practice living by the quote: speak truth, even if your voice shakes.”
Ki’tay D. Davidson’s legacy continues reverberate through the Disability community and all communities he connected with. Ki’tay passed away in 2014. Some five years have passed and we still feel his presence, remember his love lessons, and are deeply honored to share parts of his legacy this Pride month.
Ki’tay was the co-creator of the hashtag #DisabilitySolidarity, and called a ‘Champion of Change for embodying the next generation of leadership within the disability community and his commitment to the promise of the Americans with Disabilities Act.’
His partner, Talila “TL” Lewis, called him a ‘Revolutionary Champion of Love’ writing that he was:
The voice of affirmation when you weren’t quite sure of your self worth, dignity or beauty.
The voice of love & justice within institutions & organizations rife with oppression & violence.
The voice of his unique brand of Black Trans Disabled innovation when all others were frozen with fear or frozen in traditions, religion or ritual.
“I challenge the extent to which we place the responsibility for advocacy on those designated as leaders or ‘champions.’ Advocacy is not just for charismatic individuals or high profile community organizers. Advocacy is for all of us; advocacy is a way of life. It is a natural response to the injustices and inequality in the world. While you and I may not have sole responsibility for these inequities that does not alter its reality.” From ‘Championing Our Communities: An Open Letter’
Kitay was committed to racial justice, gender justice, disability justice, and trans liberation, among others. He worked tirelessly to create a wold that was more just for everyone. He intentionally centered people and communities who are most marginalized by and in our society.
“I want to believe in peace. I want to believe we can unlearn violence & affirm our interdependency. I dream of a community of lovers, who navigate pain, joy, laughter and grief together, collectively & with care; experiencing endless beauty. I think I am dreaming of a modern day heaven, or perhaps I am dreaming of the good we were meant to be.” from ‘Why I Quit Philanthropy’
The misrepresentation of our community hurts everyone — not just the vulnerable. Certainly, policies that fail to represent the needs of all or advocacy that ignores intersectionality facilitates exclusion, poverty, and oppression–to name a few. However, it also hurts those with institutional power by re-entrenching the system we are trying to fight against. It hurts our legitimacy and demolishes our ability to fight the bigger cause and the larger issue– the injustice experienced by all people. From: Reframing History and Reimagining Our Future
“The world will remember his name and ever feel his love, light and laughter.”
These photos and quotes, created by Talila “TL” Lewis, have been repurposed from the 2016 #Justice2050 Twitter Storm- Honoring Ki’tay’s legacy through collective dreaming about what our world can look like by by 2050. As with all YO! Disabled & Proud images online, the photos are described in alt text, however more detailed and personal image descriptions can be found at the #Justice2050: Ki’tay Truths Facebook album.
Have you ever thought, “how cool it would be if I were a famous performing artist?” — I have!
At a very young age I was introduced to short films, music, and movie classics. i remember the first action movie I watched the age of five was Sylvester Stallone’s “Rocky”. I was intrigued by the boxing and who was the good guy or bad guy in the movie.
The film “Rocky” had a very powerful message to me at the time. During that time I was five years old. I went to physical therapy and speech. I would dream that I was Rocky, conquering my own journey–not in a boxing ring, of course, but figuratively. My fight to get my legs stronger was not like the Rocky movie; it was my own.
Music was a huge part of my childhood, too. I grew up listening to Phil Collins and many other famous artists. Listening to music at a very young age helped with my speech and communication.
Ever since I was little, I had dreamt of being in the entertainment business. A lot of people criticized me saying that I would not be able to because of my disability, but I never let that stop me. I have performed in 35 different productions, counting theatre, films (and including a few short films
I made myself!)
Very recently I performed in a workshop reading at The Lenaea High School Theatre festival of the play, “Marvin’s Room”. I played Hank, who is a person with a mental health disability. He’s not that book smart; he doesn’t do well in school and did a very bad thing to his family’s home.
I fell in love with the play for this specific role. I had to isolate myself for a while to get into the mind of the character– how Hank would be looking at his choices and what he wants in life.
Each character I’ve played has taught me that every person has their own story to be told from the tough times and to success.
My dreams have changed a bit since my days of watching “Rocky”. I want to major in communications and continue to study acting after college. My visions for the future are taking big steps: (1) graduate high school, (2) college; (3) continue to follow my goal in entertainment. If you want to be those people you see on the big screen, don’t let people bring you down. Do not limit your options. Keep hustling and your grind to the max!
Even though it may seem like you’re not getting anywhere taking small jobs or failing in school, just remember success is not given to the ones who are not hungry; success is fed to those who work hard for their dreams.
Mike will soon be a high school graduate from Sheldon High School in Sacramento. He is currently working on a film project. He has written a movie script called “Ability” showcasing disability awareness regarding youth and students. He is also starring in an independent film called “War” that will began production In June! He is excited for the upcoming projects and can’t wait to get started.
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.
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
In honor of Black History Month, we at the California Foundation of Independent Living Centers felt that it was only fitting to highlight a few of the Black leaders with disabilities who pioneered the Independent Living Movement: Johnnie Lacy, Joyce Jackson, Donald Galloway, and Bradley Lomax.
The programs of the Service
Center for Independent Life (SCIL), Marin Center for Independent Living (MCIL) and California Foundation for Independent Living Centers (CFILC)
ABOUT THE PROGRAM:
YO! Disabled & Proud is CFILC’s statewide youth program
that is focused on connecting, educating and organizing youth with disabilities
ages 16-28 throughout California. YO!
offers youth leadership opportunities, youth social change campaign
opportunities, youth specific trainings,
youth activities developed by youth for youth and job readiness skill building
through YO! Volunteer Corp. To learn more visit
OVERVIEW OF THE POSITION:
Under the direction of the Youth Organizer the YO! Volunteer
will engage in youth organizing campaigns, promote the YO! Disabled and Proud
Assist in organizing of activities related to CFILC’s Youth Organizing!
Disabled & Proud program.
Assist in organizing events that are youth led and youth driven, such as
summits, community forums, trainings and leadership events.
Assist in collecting youth input for projects and campaigns.
Marketing & Public Relations
Assist in developing website materials and social media content.
Bolster social network presence for youth organizing activities within
your local community.
Assist in maintaining the local social network for youth.
Assist in other marketing and public relations tasks such as:
Assist in answering the YO! 411 Hotline.
Other emerging volunteer assignments as needed.
Youth with a disability between the ages of 16 -28.
Ability to communicate with other youth and adults with disabilities.
Ability to maintain confidentiality.
Ability to ask for assistance and support when needed.
Ability to research, plan and provide information to youth about local
resources and events.
Ability to operate in a computer-based office environment.
Ability to commitment 16 hours minimum per month for one year.
I may have started using assistive technology (AT) in junior high, but my ‘relationship’ with technology did not start until I got to my first year of college. Throughout my junior high and high school years, I used my BrailleNote to do almost all my homework. A BrailleNote is device that is similar to an iPad in size but thicker. It has 13 buttons and it kind of works like a laptop because it has internet and email.
The only subject I didn’t use my BrailleNote to do my homework was math. I used to do my math work on a Brailler. A Brailler is a huge machine that has ten keys and once you put a piece of paper in you could start writing Braille. For those that have seen or heard of a Brailler, will know what a pain those machines are. I was never taught or told how to do math on the BrailleNote. I didn’t even know how to use a computer.
During my first year of college, I did not know how I was going to do my homework because the college didn’t have any Braillers. I needed to figure out a way to do my math work, so I began to research for ways that blind people can do math without using a Brailler. After a couple of days of searching, I found helpful information on how to do math on the BrailleNote.
I took that situation as a wake up call and I started to search for all the technology available for me. I also started taking classes to learn more about computers and all the different screen readers. All my work paid off because I was able to successfully pass my math class. Since that event in my life, I have gotten involved with technology and I try to stay on top of it.
I enjoy connecting youth to technology because I don’t want them to go through the same struggles as I did. I want them to know as much as possible about technology so they can be prepared and successful when they go to college.
In addition, I provide my students and consumers with as many resources as possible. It is very important to me because I want them to be successful in school and work. I feel that their future depends on what I teach them and also on the resources that I connect them to. Technology is not going away, so I recommend that youth and adults learn as much as possible. It does not hurt any one to know about computers, cell phones, and other software. It would definitely look wonderful in those resumes.
Jose (Alan) Cruz lives in Southern California and is transitioning from being a Youth Organizing (YO!) Disabled and Proud volunteer to working at the Dayle McIntosh Center (DMC) in Anaheim. He has been blind since the age of four. You can see Alan working (and having fun!) with the DMC youth group via Facebook and Instagram.