Typically, on my Facebook page I make a deliberate effort to avoid offering pejorative and intemperate remarks. However today I am going to step back from this pledge and make a few observations. Yesterday I started a thread shortly before I left NYC to escape the heat and humidity for the weekend. Other than reading comments on my cell phone, I could not respond to express my expectations of civility and reasonableness. Unfortunately, two people have not met the standards of
I dislike that you call her a "dying" teen. She's not dying, she's dancing. I have the same disability she has and I'm still living with my wife and my two 14-year-old children. Her life is very tough, but my 14-year-old would tell you that their life is tough as well. This girl is living, not dying. Dying is very sudden and quite permanent. Today I'm 46. My doctors and parents expected me to be dead by the time I was five years old. At 14 my life sucked. I had few friends, c
Read the last line of this quote to yourself a couple of times. Then urge your senators and representatives to pass the Disability Integration Act. "The company informed Ms. Negron that her home care was immediately being cut to 25 hours a week from 50, and her aide, the mother of a 7-year-old, was rescheduled to work from Thursday through the weekend, not Monday to Friday. “I panicked,” Ms. Negron’s daughter Carmen Hernandez said, recalling the scene she found at her mother’
What the Gwendolyn Strong Foundation wrote and censored my commentary on: This is SMA. And this is Jerika's story. After years of pain from the complications of SMA Type 2, Jerika, at 14-years-old, has chosen palliative care for herself. End of life is a hard discussion, and especially when surrounding children. The dialogue gets even more complicated within the disability community because disability alone is no reason to die. But SMA is complicated, and no two experiences a
Tonight, members of NMD United virtually gathered to discuss the PBS documentary on late board member, Greg Smith's life and legacy. On A Roll: Family, Disability, & The American Dream is a must-watch for anyone wanting to learn about life with a disability, disability history, and the struggle for disability rights.
NMD United supports the Disability Integration Act and applauds the activists and adults with neuromuscular disabilities, like our friend, Jensen Caraballo, who have fought their way out of institutionalized settings. This is Jensen's story.