Replying to @janetg1021 This is part 1, part 2 coming soon. Step 1: Call your insurance and ask them about palliative care services and they will help you with the process. Step 2: Talk to your doctor! [ID: A video of Syanne, a disabled Afro-Indigenous Latina, speaking directly into the camera

#PalliativeCare #DisabilityAwareness #ChronicIllnessWarrior

A disease affecting 1 in 10 women and those with uteruses still receives only about $2 per patient per year in research funding in the United States. March is Endometriosis Awareness Month, and every year I’m reminded of how little research there is for this disease, despite how common it is.

Today something happened that I will probably remember for the rest of my life 🥹 Right before I was supposed to speak at the flagship @standupforscience rally on the National Mall, the ramp to the stage broke 😩. Then something beautiful happened. Truly did not expect it. A group of volun

For a long time, I thought palliative care meant something bad. But it doesn’t at all. It just means adapting to the body I exist in—and not the one I keep hoping to get back. Because that’s unlikely to happen. So maintaining my joy now means choosing supportive services so that my symptoms

When Bad Bunny steps onto the Super Bowl stage, it’s a rare moment where Latino joy is visible. And that joy matters—especially for multi-marginalized Latinos who are being hit on every front right now by this administration. For me, it’s especially impactful as a Puerto Rican woman myself.

Every blue moon, someone comments something like this. And when that comment gets repeated under multiple replies, it comes off as discrediting, and redirecting others to an established, bigger, well-known platform instead of engaging with the work I spent hours upon hours (and sometimes weeks)

This is URGENT: ICE shows what happens when the government decides some people no longer deserve freedom or rights. The active dismantling of disability law (Section 504 of the Rehabilitation Act) determines whether that logic spreads. If you live in Texas, Alaska, Florida, Indiana, Kansas, Loui

This entire shoot was planned, built, directed, shot, and edited by me, from my home, in my wheelchair. It took several days because I have serious chronic illness and disability. And I’m still not done! I have paced the work, took breaks when I needed to, and am building a beautiful series

A doctor I saw said that patients with EDS can be a little “nutty.” Six months later, at a completely different appointment with a different specialist, another doctor said that people with EDS can be “emotional.” Both times, right after saying that, they told me I’m “sweet”, and have a “posi

A lot of people who rely on healthcare, benefits, and accommodations don’t call themselves disabled. In many religious and cultural spaces, disability is framed as something you’re supposed to overcome, pray away, and fix. When that doesn’t happen, as it often doesn’t— the problem gets assig

Leadership can be as simple as a sentence in an announcement like “masking encouraged”, leaders modeling care, and recognizing that accessibility and public health are part of liberation. Disabled people should not have to wait for body counts to be taken seriously. [ID: A video of Syanne, a

If I had listened to doctors who told me not to Google my symptoms, I would be dead. At this point, I would’ve died at least three times. I’ve had health issues my entire life. By puberty, it was obvious something was wrong. Still, it took until I was 27, after multiple medical crises, for an

2025 was a bit rough, wasn’t it? 😅 I had three surgeries and entire months disappeared into recovery, pain, and survival mode. I had my driver’s license taken away even though I did nothing wrong simply because I’m disabled. I lost a scholarship because I was sick for “too long.” I

Masking says: I understand that my body isn’t the only one in this room. It says: I know disabled, immunocompromised and chronically ill people exist, even when you can’t see them. It says: I don’t need to gamble with someone else’s health (or my own) to have fun. You cannot be an ally to

ATTN: This is the worst flu surge in NYC history! We have seen this film before, and we sure as hell did not like the ending. Over 71,000 cases in one week. And nobody is talking about it. When cases spike like this, hospitals lose breathing room, appointment get harder to access, ERs slo

Disabled people are celebrated when we’re framed as “inspiring” because inspiration keeps us harmless. “Inspirational” makes us compliant and positioned below authority. Framing disabled people as only “inspirational” for the abled gaze allows people to feel good without having to confront powe

This administration is actively stripping the ACA, letting enhanced subsidies expire, and making healthcare even more unaffordable. Disabled people will be devastated by that. My community will be devastated by that. And instead of focusing on that, people are circulating jokes that mock disability

For six years, I lived with the wrong power wheelchair for my conditions. And like so many disabled people, I paid the price with pressure sores, increased pain, fainting spells, and injuries. Barbie, my new gorgeous wheelchair, fixes all of that. But the only reason I have the right equipme