I was saddened by the recent passing of Alice Wong, an American Disability Rights Activist and author. Alice Wong was the first disability advocate I encountered when I began my Disability Studies journey, and her impact has stayed with me ever since. Her unapologetic activism, her storytelling, and her commitment to disability justice opened my eyes to what true advocacy looks like.
Similar to the NVLD Project, Alice had founded the Disability Visibility Project which amplified disabled voices and created disability spaces where Disability culture was celebrated. Through this, Alice gave a voice to those who had invisible disabilities such as NVLD and allowed a safe place to unmask. Disability empowerment through storytelling was essentially the love language that Alice gave to the Disability community. She was a role model for the disability community as she instilled the importance of being authentic and unapologetic when it comes to sharing your disability identity.
Disability Justice is a vital aspect for the NVLD community as it pushes against ableism and centers lived-experiences. Alice believed “stories are activism” and pushed for personal narratives to help break stereotypes and show the real diversity of lived-experiences. People’s experiences with NVLD often go unseen or minimized, Alice was a trailblazer in illuminating a pathway forward in acknowledging that disabled people have power and value and that nobody should advocate alone.
Alice’s passing is a call to action for the NVLD community. Her legacy lives on and her principles can guide the NVLD community going forward. I alongside so many other disabled people saw myself in Alice. Writing for the NVLD Project and using personal narratives can help break stereotypes and show the real diversity of NVLD and shed light and awareness on lived experience. Visibility, as Alice Wong taught the disability community is a form of Disability Justice. Now, more than ever in society NVLD voices are needed to join broader Disability conversations. Alice leaves behind the notion to push the conversation further and to educate others about disability through storytelling. This is another beautiful example as to why the NVLD Project is so important.
Lastly, I’ll end with one of my favorite quotes from Alice, “there is so much that able-bodied people could learn from the wisdom that often comes with disability.” Alice Wong reminds us that people with disabilities hold lived knowledge that’s too often overlooked or erased. When we hold space for the NVLD community, we can embrace a better understanding of the value of neurodiversity.
