Hola Titánicos, cada 28 de febrero se celebra el día mundial de las enfermedades raras, este año bajo el lema: "Porque cada pERsona importa", poniendo el foco en quienes hay detrás de cada diagnóstico, cada tratamiento y cada investigación: las personas y sus familias.

https://somosdisca.es/dia-mundial-de-las-enfermedades-raras-2026/

#Diamundialdelasenfermedadesraras #diadelasenfermedadesrara #cebras #enfermedadesminoritarias #enfermedades
#salud #enfermedad #saludmental #enfermedadrara #enfermedadesraras #discapacidad #disabilities #DisabilityAccess #disabilityAdvocacy #disability #titanicos #visibilidad #titan #prevencion #cuidados #somosdisca #gentetitanica #investigación #diagnostico #cura #tratamiento #feder #somosgentetitanica

Día Mundial de las Enfermedades Raras 2026 - Somosdisc@

Cada 28 de febrero se celebra el día mundial de las enfermedades raras, este año bajo el lema: 'Porque cada pERsona importa'.

Somosdisc@

I just contacted my legislators about the Medical Foods and Formulas Access Act.

I use prescribed oral medical nutrition specifically to prevent needing a feeding tube. Right now the system will often cover the tube and hospital care but not the treatment that helps avoid it in the first place.

For many disabled and chronically ill patients this is the difference between staying stable and medical decline, especially for people on Medicaid or fixed incomes.

If you are in the US and this applies to you, the Rare Disease Action Network has a quick form you can use to contact your representatives.

https://rarediseases.quorum.us/campaign/154665

#MedicalFoods #RareDisease #DisabilityAdvocacy #HealthcareAccess #ChronicIllness #Medicaid #PatientAdvocacy

Support Access to Medically Necessary Nutrition for People with Rare Diseases

Many people affected by rare diseases rely on medical nutrition products such as low-protein modified foods or specialty formula as part of treatment for their condition.

Time for #TipOfDay since I’ve been glowing for a few days now with joy in having a number or things go right; good coffee at hand and a quiet home to browse online and remember other pleasant things that took a lot of work yet went well. This post has many accommodations we use for #Accessibility.

Solved: for my son who is a wheelchair user to sit right up to the table. The height of the chair arms was limiting how close he could sit. Tables were way too low or too high. After trips to furniture stores with no success finding a table with height to allow wheelchair to fit under it. “Counter height” tables too high.

Son has to have support for his back and arms while eating. He has declining dexterity so he has a special spoon and adult bib. I’ve kept a heavy vinyl topper on the heavy oak table and use placemats. Think: messy eater. He could only get seated close but still 8-10” farther away from the edge of our table because of the arms of his chair or wheelchair. We all wanted him to sit right up with us.

So, no new table was available and none online a height where a wheelchair user can fit in with the rest of the adults at the table. Think of how many families have this same issue! Surely a workaround is needed.

Voilá, lightbulb moment. Got very strong walnut risers 1” tall for table legs. Drilled hole through and got bolts 1 1/2” to attach to original hole in leg used for original bolt with thin hard caster. Put 2 heavy felt casters in place. Now table perfect height to allow an armchair or wheelchair to slide under. But the old chairs were a bit low for table now. Voilá, very thick chair pads solved it all. Instead of spending $1,000 or more on new table and chairs, spent about $100 and we are all happy. #Disability #Wheelchair #WheelchairUser #DisabilityAdvocacy

Congress Set to Reject Trump-Era Changes to Special Education and Disability Programs

Congress is moving to block major changes proposed by the Trump administration that would have significantly reshaped special education funding and federal disability programs. A bipartisan budget agreement advancing through Capitol Hill rejects efforts to overhaul the Individuals with Disabilities Education Act (IDEA) and preserves key programs serving people with disabilities.

Lawmakers in both chambers are racing to pass funding for most federal agencies before the current deadline of January 30. The U.S. House of Representatives has already approved the agreement, and the U.S. Senate is expected to consider it next.

What the Budget Agreement Does

The funding deal delivers a clear rebuke to proposals put forward during the Trump administration, including those by Donald Trump, that disability advocates warned would weaken protections and services.

Key provisions include:

A $20 million increase in special education funding Rejection of efforts to block grant IDEA funds, which would have given states more discretion while eliminating dedicated programs Preservation of parent training and information centers, technical assistance centers, and personnel preparation programs Limits on shifting special education oversight away from the U.S. Department of Education

“Importantly, the deal rejects the block granting of IDEA funds proposed by the administration,” said Stephanie Smith Lee of the National Down Syndrome Congress, a former senior official in the Department of Education’s Office of Special Education Programs.

Protections for the Department of Education

The agreement also includes language designed to prevent administrative workarounds that could undermine congressional intent.

According to advocates, the bill:

Prohibits the Department of Education from transferring education funds to other federal agencies without explicit congressional approval Blocks the use of funds for departmental reorganizations that would decentralize or reduce staffing related to special education

Advocacy groups view this as a direct response to concerns about dismantling or weakening federal oversight of K–12 and special education services.

Disability Programs Maintained Across Federal Agencies

The spending package also safeguards programs housed within the Department of Health and Human Services (HHS), including:

The Administration for Community Living (ACL), which supports community-based services for people with disabilities, older adults, and caregivers University Centers for Excellence in Developmental Disabilities (UCEDDs) Protection and advocacy programs serving people with disabilities

HHS had previously announced plans to eliminate or reorganize some of these programs, but Congress opted to maintain current funding levels.

“Congress has unequivocally rejected the proposals in the president’s budget to cut programs that support people with disabilities,” said Alison Barkoff, a former head of the Administration for Community Living.

Why Advocates Say Vigilance Is Still Needed

Despite the apparent victory, disability and special education advocates caution that oversight remains essential. Even after passage, agencies control how and when funds are distributed.

Advocates stress the importance of ensuring:

Timely distribution of congressionally approved funds No administrative efforts to defund or delay programs based on shifting priorities Continued enforcement of IDEA and federal disability protections

Denise Marshall, CEO of the Council of Parent Attorneys and Advocates (COPAA), emphasized that Congress has not authorized moving special education programs out of the Department of Education and that families should remain watchful.

A Significant Win for Disability Advocates

If finalized, the agreement represents a major win for people with disabilities, their families, educators, and service providers. It reinforces Congress’s role in shaping disability policy and signals bipartisan support for maintaining long-standing federal protections in special education and community-based services.

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#CongressDisabilityPrograms #DepartmentOfEducation #disabilityAdvocacy #disabilityRightsPolicy #federalBudgetAgreement #IDEAFunding #IndividualsWithDisabilitiesEducationAct #News #specialEducationFunding #specialEducationNews

Permission to Go Easy (and Why That’s Not “Lazy”)

The term "lazy" is often misapplied to those with disabilities or neurodivergence, masking their efforts to function effectively. Prioritizing rest, simplifying routines, and collaborating are strategies for sustainable productivity. Embracing a gentler approach fosters creativity and respect for personal limits, allowing for a healthier, more effective workflow.

https://dreamspacestudio.net/permission-to-go-easy-and-why-thats-not-lazy/

Registration is now OPEN for the 2026 ACB D.C. Leadership Conference!

The conference will be held 3/6 to 3/10/26, as a hybrid event, with in-person activities in Arlington, & virtual participation options. Events include legislative training, Capitol Hill visits, advocacy discussions, and more.

Registration closes 2/28/26. Hotel room block deadline is 2/6/26.

Learn more and register:
www.acb.org/2026-acb-dc-leadership-conference

#ACBLeadership #Accessibility #DisabilityAdvocacy #PCBCommunity

WKYC Channel 3

WKYC (Cleveland) is your source for breaking news, Northeast Ohio weather, traffic, and live coverage in Cleveland and across the region. Get the latest updates from the WKYC team — from major local headlines and investigations to severe weather, community stories, and the moments everyone’s talking about. Watch live newscasts, stream breaking coverage, and catch up on the top stories shaping Cleveland, Akron, Canton, and surrounding communities. Subscribe for: • Cleveland breaking news + live updates • Northeast Ohio weather forecasts and severe weather alerts • Investigations and accountability reporting • Community stories across the region • Major events, sports, and local explainers WKYC — Cleveland news and weather, live and on demand. 🔗 More: https://www.wkyc.com/

YouTube

👋 Hello Mastodon!

PCB is excited to be here! For over 75 years, we’ve advocated for people who are blind or have low vision across PA, promoting accessibility, independence, & equal rights.

We believe accessible social media matters.

We’re glad to be part of the conversation.

https://pcb1.org

#Mastodon #Accessibility #Blind #LowVision #DisabilityAdvocacy #InclusiveDesign #Pennsylvania

Home - Pennsylvania Council of the Blind

PCB SPOTLIGHT Calendar of Events [my_calendar_upcoming] View Full Calendar Contact PCB PENNSYLVANIA COUNCIL OF THE BLINDPO Box 68Volant, PA 16156-0068 (877) 617-7407 or (717) 920-9999  Please select extension: 800 for the Administrative Secretary 900 for the Outreach and Engagement Specialist [email protected]

Pennsylvania Council of the Blind

2025 feels so significant after years of deep struggle.

What began as a year marred by family estrangement and a bad therapist transformed as I worked through the mechanics of CPTSD and internal communication. Since discovering I am AuDHD in April, I have finally begun to understand how my system works rather than seeing it as something to fix.

Educationally, I settled into my path and am now completing my Master of Counselling after trying a few different pathways. My life as a choral scholar also flourished, moving from a half-scholarship to a full scholarship this year. Although I left the Synphony chorus, music remains a constant through my Anglican church choral work.

For the first time, I stepped into volunteering, contributing to accessibility, copywriting, and peer groups. I am working with an autistic-led organization and will lead 2 seer groups next year. I am also an online community champion for the Beyond Blue. 2025 has been a year of claiming space where I was once told I did not belong.

#2025YearInReview #AuDHD #CPTSD #MasterOfCounselling #ChoralScholar #DisabilityAdvocacy #Accessibility #BlindLife

When Bullies Punch Down, I Punch Back (and Why I’m Done Being Quiet)

I hate bullies. I hate them with a passion. Not in a casual, eye-roll way. I mean a deep, lived-in dislike that comes from decades of being on the receiving end of their cruelty.

I was born with a lazy eye, clinically known as strabismus. It is part of my body. It is part of my face. It is something I did not choose and cannot control. And for as long as I can remember, it has been an open invitation for strangers, classmates, and now internet randos to say something slick, “funny,” or outright cruel.

If you have ever been bullied for your appearance, your body, your condition, your disability, your neurodivergence, your accent, or simply for existing a little outside the norm, you already know this story. It starts young. It hurts deeply. And at first, it makes you cry.

I cried. A lot.

But at some point, crying stopped working.

The moment anger replaced shame

There was a turning point in my childhood where sadness hardened into anger. Not the kind of anger that destroys you from the inside, but the kind that wakes you up. The kind that says, “No. I am not the problem here.”

Bullies taught me several things, whether they meant to or not.

They taught me that bullies are scared human beings.
They taught me that bullies suffer deeply.
They taught me that bullies will grab onto anything they perceive as smaller, different, or vulnerable so they can punch down and feel powerful for five fleeting seconds.

I am not offering some groundbreaking psychological insight here. We have all heard it before. Hurt people hurt people.

But here is where I draw the line.

I refuse to be hurt by hurt people.

Once I understood how deeply insecure bullies actually are, something shifted in me. I stopped internalizing their words. I stopped assuming they were right. And I started talking back.

Why I stopped being polite about my pain

When someone is bold enough to comment on my body, my eye, or my condition, something I cannot change, then they have forfeited my politeness.

That realization is how I survived that part of my childhood.

I matched their energy.
I named their behavior.
I made it clear I was not ashamed.

Was it always graceful? No.
Was it effective? Absolutely.

Because bullies rely on silence. They rely on you shrinking. They rely on shame doing their work for them.

When you speak up, when you push back, when you show them that their words do not own you, their power evaporates. They are suddenly exposed for what they are: insecure people flailing for control.

Screenshot 1

Online bullies are not different. They are louder.

Fast forward to adulthood, and the setting has changed, but the behavior has not. The playground is now a comment section. The whispers are now public replies. The cruelty is now dressed up as “jokes.”

Recently, I received a comment on one of my videos that leaned on an old, lazy, ableist joke about my eye. The kind of joke that bullies think is clever because they have heard it echoed a thousand times before.

I responded.

Not because I needed validation.
Not because I was hurt.
But because I refuse to be silent.

Online or offline, I will call out nasty behavior when I see it. I will point to it directly and say, “This is what you are doing, and it is not cute.”

This blog post is part of that same refusal.

Where my confidence really came from

I need to say this clearly: I did not get here alone.

I was fortunate. Deeply fortunate.

My grandmother raised me to know there was nothing wrong with me. She did not minimize my pain, but she never let me believe the cruelty I faced was deserved. She taught me that the problem was never my face, my eye, or my existence. The problem was always the people who felt entitled to comment on it.

That foundation matters.

Because when you grow up being told you are whole, you are far less likely to believe people who try to tear you apart.

Thanks to her, I learned how to stand up for myself. I learned how to take up space. I learned how to speak without apologizing for my body.

Screenshot

The truth bullies do not want you to see

Here is the part that makes bullies uncomfortable.

The joke is never really about you.

The joke is about their emptiness.

People who know and love themselves do not need to mock someone else’s body to feel joy. People who are secure do not punch down. People who are at peace do not need to humiliate others for entertainment.

Ableist jokes are not humor. They are confessions.

They confess fear.
They confess self-loathing.
They confess a desperate need to feel above someone, anyone, for a brief moment.

That is why I can say, without hesitation, that the joke is on him. I know myself. I love myself. And I do not need to tear someone else apart to feel worthy.

Bullies cannot say the same.

If you are being bullied, read this slowly

If you are reading this and you are being bullied right now, I want you to hear this clearly.

The problem is not you existing.

The problem is not your body.

The problem is not your condition.


The problem is not your disability.


The problem is not your difference.

The problem is the bully who cannot stand to see you exist because your existence reminds them of the hatred they carry toward themselves.

You do not owe anyone silence.
You do not owe anyone softness.
You do not owe anyone understanding at the expense of your dignity.

Whether you choose to clap back, block, educate, or walk away, the choice is yours. Power looks different for everyone. What matters is that you do not internalize their cruelty as truth.

You are not too much.
You are not broken.
You are not wrong for taking up space.

And if no one has told you this lately, let me say it plainly.

You deserve to exist loudly, confidently, and unapologetically.

Even when bullies wish you would disappear.

Especially then.

#ableism #bodyShaming #callingOutHarm #ConfidenceBuilding #disabilityAdvocacy #disabilityVisibility #LatinaWriterPerspective #livedExperience #marginalizedVoices #onlineBullying #OnlineHarassment #PersonalEssay #Resilience #selfLove #selfWorth #standingUpForYourself #strabismusAwareness #traumaAndHealing