You’ve been actively involved in disability rights work for quite some time. Can you share with us how you found your way to this work?
My formal path to disability rights work began when I joined the Consumer Directed Personal Assistance Association of New York State (CDPAANYS) in 2012 as an executive assistant. In the beginning, I studied the laws and regulations that created the consumer directed personal assistance program (CDPAP). Part of this education was learning about the independent living movement and the move away from institutions that resulted in the creation of attendant care programs. I learned the principles of grassroots advocacy and legislative campaigns and got to know many exceptional advocates and leaders in the disability rights movement.
On a personal level, I was raised by a disabled parent and am disabled myself. My dad has psychiatric disabilities and a brain injury, and I have ADHD and skin picking disorder. It took me a while to accept my disability. I spent years trying to convince myself that if I “tried harder” it would go away, but fighting against who you are never works. Entering the disability rights field professionally has felt both natural and right.
Congratulations on becoming the new Executive Director of NYSILC! What is the main purpose of NYSILC’s work and your vision for the organization moving forward?
Thank you! NYSILC is a Statewide Independent Living Council (SILC). Our disability-led Council is made up of 26 appointees from around New York State. NYSILC works with New York’s 41 independent living centers to create and oversee the Statewide Plan for Independent Living (SPIL). The SPIL outlines how independent living services will be provided statewide, and is required by law to receive federal funding.
One of my long term goals is for NYSILC and the Independent Living Network to expand and strengthen our reach and appeal to younger generations of disability advocates. If we surveyed New York young adults with disabilities today, would they know who NYSILC is or what an independent living center does? Many recipients of our Pat Figueroa scholarship for people aged 18-28 have gone on to become successful leaders at work and in the community. I hope we’ll be able to expand these types of opportunities and develop new partnerships to make becoming a disability rights leader as affordable, accessible, and fun as possible.
As an advocate with a deep well of experience, what guidance do you have for disabled people seeking to become stronger advocates and storytellers?
Storytelling is personal. Be yourself, and don’t be afraid to show personality. If you are interacting with elected officials or the press, it is important to be able to tell your story as clearly and simply as possible. Assume the person you are talking to knows nothing about the topic you are discussing. Do you have an “elevator pitch?” And keep in mind: what is your goal in telling your story? Do you want a specific bill to be passed? What is the ask? I also believe everyone can benefit from mentorship. Experienced advocates love sharing knowledge and experience with those who are younger and newer. So if you’re new or looking to gain experience in disability advocacy, I recommend connecting with a mentor in some capacity. There are online and in-person meetups and resources to help build public speaking, writing, and other communications skills.
With so much happening in the world, what are your biggest disability rights priorities at the moment?
One thing to watch for is the very real possibility that New York State will legalize assisted suicide this year. The Medical Aid in Dying Act has passed both houses and the next stop will be the Governor’s desk for signing. Our deeply flawed, for-profit healthcare system has shown time and time again that it does not value disabled lives and routinely denies life-saving care.
Directly related to the above, there are ongoing and impending issues related to Medicaid home care. I’m being polite when I say the CDPAP transition to PPL, the statewide vendor, has been a challenge. It’s made it much harder than it already was for people with disabilities to hire and keep home care workers. And independent living centers are being prevented from being able to properly help consumers who come to them looking for assistance.
On September 1, regulatory changes to the minimum required Activities of Daily Living (ADLs) will go into effect. This will eliminate the “housekeeping” level of personal care, which keeps people with moderate needs out of hospitals and institutions. If you think you might fall into this category, get assessed through the New York Independent Assessor before September 1.
And of course there’s the passage of H.R. 1, set to go into effect at the end of next year. We’re facing nearly $1 trillion in cuts to Medicaid and almost $300 billion cut from SNAP. We all need to organize and fight this together.
What sparks joy for you and sustains you even as you navigate challenging situations?
Disconnecting from the world of people and the internet to connect with the natural world has been a consistent source of joy throughout my life. I study animals and plants and try to identify what I hear and what I see every time I go outside. I read guidebooks and use the Merlin Bird ID app to identify bird calls and PlantNet for flowers and plants. When the weather is uncooperative or it’s the middle of winter, I like to read books that take place in natural settings.
I also watch a lot of K-dramas for comfort. A lot of shows can be too “in-your-face” and I need something calm and wholesome with subtitles. Right now, I’m working my way through “Our Unwritten Seoul,” which I’d recommend to anyone.