Mike Phillips was diagnosed with the neurodegenerative disease spinal muscular atrophy over 30 years ago. His mother and caregiver, Karen Clay, said doctors told her Phillips wouldn’t see his first birthday.
And yet here he is, appearing on national television decades later to fight for his self–described constitutional right to life, liberty, and the pursuit of happiness.
Phillips and Clay were guests Friday on MSNBC’s The Last Word to stand up to Republican efforts to cut Medicaid as part of proposed health care legislation that would destroy Phillips’ ability to live a fulfilling life given his debilitating disease. Phillips’ public appeal was so moving that host Ari Melber choked back tears while trying to make his way through the interview.
“Over time, his needs have changed and the amount of care that he’s needed has increased. And that’s what Medicaid is all about,” Clay told Melber. “Medicaid is called a lifeline, but for people like my son, Medicaid is a life.”
Clay noted that the family’s home state of Florida does not have facilities to provide daily care for citizens like Phillips, and worse, he could be forced from his home to another state. Or, he would end up in a life–threatening situation. Through a Medicaid waiver, Phillips receives home care, and he’s terrified the Republicans’ health care bill would eliminate that possibility.
“This bill is not just mean, this bill is cruel,” Clay said. “We cannot believe that a bill that is this cruel could possibly be enacted by anyone.”
Phillips’ statement, delivered with computer–assisted technology, was equally chilling. After listening to what he has to say, it’s unfathomable that we should find ourselves confronting this situation as a nation:
So ever since Nov. 9, 2016, I haven’t been sleeping well. I’ve been scared. I’ve never been scared by the results of an election. It’s an odd feeling. I’ve always felt like the federal government exists to protect citizens, even when state governments won’t do so. Maybe especially when state governments won’t do so. So, yes, I’m scared.
Scared of what could happen to me if Medicaid cut comes to pass in Florida and scared because Florida is bent on doing so because they know the federal government won’t stop them. Though I’m quite disabled, Medicaid services allow me to live a full, productive life, interacting with the community, being cared for at home.
I live at home. I have a personal care assistant. She takes me anywhere I want to go—the movies, Starbucks, dinner with friends, the tattoo shop, when the mood takes me, which is often enough…
Losing Medicaid, being forced into an institution, I’d lose everything. I’d lose the rights guaranteed to me under the Constitution: life, liberty, and the pursuit of happiness. People with disabilities know happiness isn’t guaranteed, but we want a shot at it just like anybody else.
According to guest Andy Slavitt, former acting administrator of Medicare and Medicaid Services, more than 10 million people living with disabilities in the U.S. are dependent on Medicaid services.
Follow Phillips as he and his mother continue their fight to protect Medicaid on Twitter: