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Elizabeth Kim

Washington, D.C., May 18 – If you knew your baby had a disability, would you still keep it?

Two students from my church fellowship debated this question, as I sat quietly between them. My body tensed up, preparing for their answers.

No… I don’t think I would. I would want my child to be healthy and happy.

Well, if God made all of us in His image… shouldn’t we keep the baby?

They turned towards me with sheepish smiles, as if they just remembered I was one of those babies. My eyes widened, and I hastily raised my hands.

No, no, don’t worry! I won’t get offended, please don’t let me stop you from talking about this. I understand where you’re both coming from.

Part of that was a lie.

I was offended, but too numb to register the emotion because I heard variations of this conversation growing up. The responses were similar. No, we want them to be healthy. With genetic engineering, we could remove the defective gene! No, I don’t want my child to have so much suffering in her life. Well, I don’t know… What do you think? I leaned towards “no,” too, until I learned about ableism years later.

I was born deaf to hearing immigrant parents and received bilateral cochlear implants, my first one at thirteen months old, my second at ten years old. As a triple minority, one of the biggest challenges is figuring out how to show up as you are in different spaces. No matter where I go, I’m a woman in a man’s world. I’d feel excluded not only from the AAPI community because of my disability, but also from the disability community because I’m a person of color, which affected my mental health. Over time, the lights in my mind dimmed. Once dark, beasts of all kinds emerged.

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In Memory of Neil Jacobson

Neil Jacobson sitting at his computer and smiling he has a beard and is wearing glasses grayscale photoI met Neil and Denise Jacobson 20 years ago when I was in law school. The reform movement of Judaism was gathering together a group of its leaders with disabilities. I was already pretty jazzed to be invited into such a crowd at the ripe age of 22, but I was blown away by this dynamic power couple. Neil was still in banking then, and it really meant something to me to see someone else with cerebral palsy with professional success.

We stayed in touch. When I left law to go into business for myself, Neil was constantly checking in, sharing his own business ideas, and asking about me. For years before I joined RespectAbility, Neil pressured me to move to California. He knew things would be better for me here, but somehow I never quite understood that the regional center program, which provided all of his independent living support, would support me. When I did finally move here, he was a little disappointed that I moved to “Hell-A” as he called the city in which I live. In fact, it wasn’t until sometime last year that he finally accepted that I was not going to move to his beloved Northern California, but he was happy I was here. He helped me to get regional center services. Now I have the best quality of life that I ever had, and I can thank Neil for it, among others. [continue reading…]

“I am heartbroken over Neil’s passing. He was a giant among us, and the enduring nature of his pioneering legacy will serve as an ongoing testament to the power of just one person to make the kind of difference whose ripple effects will last for generations.

Whether through his leadership in faith inclusion, his tireless and successful efforts to increase economic empowerment of countless members of the disability community, his impact as Vice Chairman of what was then the President’s Committee on the Employment of People with Disabilities in the Clinton Administration, his achievements in executive leadership at Wells Fargo, his indelible impact on the Independent Living Movement, his international work to change lives around the world (including in Uganda at an organization that bears his name), his groundbreaking work at the World Institute on Disability, or through his work as an early Board Member here at RespectAbility, the result was always the same. Namely, everything in which he was so deeply involved benefited indelibly. [continue reading…]

Neil Jacobson headshot in grayscaleNeil Jacobson may not have known, but he was my teacher.

Neil Jacobson was one of the earliest pioneers in Jewish disability inclusion and belonging. His grassroots advocacy and action in his own congregation became a call to action for other synagogues and Jewish organizations in the Reform movement and beyond. Neil’s influence and his teachings were infused with a love of Torah and the need to belong.

All of us at RespectAbility offer our condolences to the family and friends of this giant in the disability rights advocacy movement. Many remember Neil as one of the people featured in the film “Crip Camp.” I remember Neil from years ago when we volunteered for the nascent disability inclusion initiative of the Union for Reform Judaism (URJ).

Neil and I were members of a Union for Reform Judaism (URJ) disability inclusion task force established in the mid-2000s by Rabbi Richie Address. Neil was leading the Access Task Force at his congregation, Temple Sinai in Oakland, CA. I was a member of a Reform congregation and was also leading a Jewish community-wide inclusion program. [continue reading…]

Neil Jacobson sitting at his computer and smiling he has a beard and is wearing glasses grayscale photoI interviewed Neil and Denise Jacobson, following a Jewish community screening of the film, “Crip Camp.” They were featured in the film along with Neil’s childhood friend, Judy Heumann, of blessed memory.

Neil was a child of Shoah (Holocaust) survivors. Neil described his father as “the happiest, friendliest, most easy-going guy I have yet to meet. His attitude was that if he could survive the war, he was going to be happy.”

Neil loved life. His joy was contagious, rooted in a deep reverence for life and wonder at the miracle of survival. Neil’s love of life was clearly intertwined with his love of Judaism. The Torah tells us to choose life. [continue reading…]

Summer and sex are here for Chrissy Marshall and her new Easterseals Disability Film Challenge winning short, Rain in my Head. Marshall’s work as a writer/director features two deaf queer lovers, Sarah and Marie, who wander through the quandaries of connection and fulfillment. At the start, Sarah, smoking in the arms of her lover, poses the question: “Do you ever get tired of seeing the glass half full?” Marie answers: “No. We’ve struggled enough. It’s time to be happy.” After the exchange, the film joyfully ambles through a portrait of their lives, holding true to the promise of happiness that Marie speaks of. After all, queer love receiving a happy ending is no small thing. For Rain in my Head, it is the happiness being the end destination that makes it work so well.

In addition to the upbeat ending, the gorgeous movement of the camera and lighting draws us in. It is very apparent that Marshall has homed in on a directing style that is clear and effective. Her film drew accolades from the Easterseals Disability Film Challenge for that as well. [continue reading…]

AADI logo.In this month’s partner spotlight, we look at the fantastic work the Asian Americans with Disabilities Initiative (AADI) is doing. AADI seeks to bring a haven for Asian Americans with disabilities online and in person.

AADI came about when Founder and Executive Director, Jennifer Lee, began recognizing and understanding her disability while grappling with the anti-Asian hate that rose during the COVID pandemic.

Young Asian Americans with disabilities drive AADI, including former RespectAbility Entertainment and News Media Fellow Dennis Tran, who is on Jennifer’s team as a Directory Manager on their External Relations Committee. [continue reading…]

Kaamilah Gilyard smiling headshot in black and white

Kaamilah Gilyard

Kaamilah Gilyard always dreamed of becoming an actress. Just when she was getting ready to show the world her talents, she was diagnosed with Lupus, a chronic autoimmune disease that causes the immune system to attack the body. Her journey with Lupus has not been easy and has affected every aspect of her life, including her acting, education, job security, family, and relationships. Kaamilah used the diagnosis as motivation to prioritize her health. Kaamilah says she is a spiritual person, and believes that “God gives His hardest fights to His strongest warriors.” She is one of them, fighting not just for herself but for others with Lupus as well.

Kaamilah’s advocacy work started while she was hospitalized for more than a month. After she recuperated with at-home care, she contacted the Lupus Foundation of Pennsylvania, and they connected her with a local foundation. She spoke to State representatives and let them know that more research funding was needed for Lupus. She made it her personal goal to meet them at the State Capital, saying “I found my voice and have not shut up since.”

Kaamilah has visited Washington, D.C. on several occasions to speak with Senators and Representatives to push bills through. She was the inaugural speaker at the Congressional Lupus Caucus in 2012. She also spoke in Albany, New York, to declare May National Lupus Awareness Month. She has worked with the FDA, the Lupus Research Alliance, and the Multicultural Lupus Taskforce to get people of color and underrepresented communities involved in clinical trials. [continue reading…]

Shaylee Mansfield wearing headphones in a scene from a new episode of "The Company You Keep"

Credit: ABC/Raymond Liu

Los Angeles, May 1 – A recent study by NRG and Deaf West Theater shows at least 79% of deaf consumers believe that there has been more representation of their community in TV and film compared to a year ago. One actress contributing to this representation across genres is Shaylee Mansfield. At just 14 years of age, Mansfield is quickly becoming a household name and role model for all children.

“I’m grateful to have a platform that will give not only Deaf children, but all children to freely speak up, to fight for what they want, and to be fully themselves even if it is not ‘popular,’” Mansfield said in an interview with RespectAbility.

While many of her roles in the past were for children’s shows, Mansfield’s current role is on ABC’s The Company You Keep. She first guest starred as Ollie in the pilot (February 2023), playing cards with her grandfather. [continue reading…]

Los Angeles, April 28 – A new Annenberg Inclusion Initiative Report examining Netflix’s U.S. original, live-action, fictional series and films is changing the landscape in the entire entertainment industry. This report, which is the second in a series, looks across Netflix films and series in 2020 and 2021 and follows the inaugural collaboration from 2021 that included findings on movies and episodic content from 2018 and 2019. While most studies solely focus on representation of race and gender, a very important aspect to note is the study’s in-depth review of disability representation on screen. Since so few reports include disability, it is commendable that Netflix was intentional about the inclusion of disability.

The sample included a total of 546 fictional narratives (249 fictional films, 297 series) between 2018 – 2021. Only 4.2% of those in 2021 featured leads / co-leads with a disability. Unfortunately, these numbers do not come close to representing the 27.2% of people in the U.S. having a disability per the U.S. census. While the stats show that more work needs to be done, the mere fact that this study has published this data shows Netflix’s desire to be fully inclusive. [continue reading…]

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