Getting Through the Door Isn’t Enough
When most people decide to go to see a show, they don’t have to think much about all of the logistics involved. They buy tickets, make plans with their friends, and figure out where to park. But for a disabled person like Jill McAuley, preparing for a concert begins long before the first song plays.…
Behind the Curtain of the No Surprises Act
The promise was simple: end surprise medical bills and protect people from unexpected, often devastating healthcare costs. For millions of Americans, the No Surprises Act has done exactly that. Many patients are no longer shocked by a trip to the mailbox because they do not find an unexpected medical bill waiting there. But as often…
There Are Only a Few Stairs
Earlier this week I heard back from an apartment complex that I had applied to. I specified that I would need an accessible apartment. Unfortunately, their definition of an accessible apartment was one that had a “few” stairs in order to enter, but was on the first floor. This is one of the most difficult…
What a Reassessment Can’t Measure
Earlier this year, MassHealth took away my overnight personal care assistant (PCA) hours. That meant losing fourteen hours of support every week. On paper, it was just another reassessment and another determination about what support I supposedly needed. In reality, it was a reminder of how fragile independence can be. That is one reason I…
What Happens When Care Disappears?
Tori Kantor’s life is full of ordinary moments. She enjoys painting, cooking, and sharing her world on social media. However, those everyday moments are accompanied by a reality that many disabled people know all too well: independence is only possible when adequate support exists. Kantor, who is quadriplegic because of a rare genetic condition called…
World CP Day Is Over and the Work Continues
Yesterday was World Cerebral Palsy Day. As the social media posts, awareness campaigns, and messages of support appeared across my feed, I found myself reflecting on what cerebral palsy actually means for me. I have lived with cerebral palsy for 27 years. When most people think about CP, they think about the physical symptoms. The…
What Is Lost When Disability Data Vanishes
For disabled people, being counted in government health data is about more than statistics. It is about whether our experiences are recognized, whether health disparities are understood, whether researchers have the information they need, and whether policymakers can identify where services and supports are most needed. When disability data disappears, part of the picture of…
“There’s No Way My Daughter’s Going There”
CW: Institutionalization Sue Root remembers the day her daughter Amy was hit by a car while riding her scooter. At eight years old, Amy suffered catastrophic injuries. Doctors explained that Amy might benefit from placement in a long-term care facility, but Root quickly decided that was not an option. For more than a decade, she…
Waiting for a Medication That Never Came
CW: Suicide Kenney Blewett was diagnosed with lung disease more than a decade ago. Earlier this year, though, he began experiencing flare-ups which made him feel like he couldn’t breathe. His wife, Cindy, said Blewett described those flare-ups as “the scariest things in the world.” While the episodes only lasted a few minutes, they also…
When Quality of Life Doesn’t Count
Finn Sheets is 15 years old and lives with cerebral palsy. His mother, Kasey, has spent the past two years fighting with the Ohio Department of Medicaid and the Cuyahoga County Board of Developmental Disabilities to get them to pay for a stairlift so that Finn has access to the basement of their home. She…
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