When my uncle was elected President, I recognized what a highly
privileged position I would be in. I would have some access to the White
House. And as long as that was true, I wanted to make sure I used that
access for something positive. I was eager to champion something my
wife, Lisa, and I were deeply passionate about, something we lived every
day: the challenges for individuals with intellectual and developmental disabilities and their families.

Our son William, our third child, was born on June 30, 1999. Within 24
hours, he went from seemingly healthy to fighting for his life in the
NICU. Raising him was different from the start. William was diagnosed at
three months with infantile spasms, a rare seizure disorder which in
William's case altered his development physically and cognitively. We
had so many questions: What would the future hold for someone like
William? How far could he go? How much could he learn? Would he ever
have the chance to do the things that other children do?

We just didn’t know. It took 15 years before his medical team could accurately pinpoint the cause of his condition: a KCNQ2 mutation, a
genetic misfire that the doctors called a potassium channel deletion.

In January 2020, just before COVID hit, Lisa, myself, and a team of
advocates met with Chris Neeley, who headed the President’s Committee
for People with Intellectual Disabilities, a much-needed federal
advisory committee that promotes policies and initiatives that support independent and lifelong inclusion. We discussed the need for all
medical schools to include courses that focus on people with
intellectual and developmental disabilities.

We spent the next few months making calls and talking with officials and gathering our own recommendations.

By this time, COVID was raging. We were all masked up and COVID tested
on the way into the White House Cabinet Room. Once we got inside, we sat
down with Alex Azar, the administration’s secretary of health and human services, and Brett Giroir, the assistant secretary for health, both of
whom served on the White House Coronavirus Task Force. The promising
agency motto stated: HHS: Enhancing the Health and Well-Being of All
Americans.

I made a brief introduction. Our group included a leading doctor and
several highly qualified advocates. What followed was a great discussion.

Excellent. We were making progress.

“Really appreciate your coming in,” Azar finally said, more warmly than
he had sounded at the start. “I know we’re going to see the President.”

The meeting I had assumed would be a quick handshake hello with Donald
had turned into a 45-minute discussion in the Oval Office with all of us.

Donald was still Donald, of course. He bounced from subject to subject—disability to the stock market and back to disability. But promisingly, Donald seemed genuinely curious regarding the depth of
medical needs across the U.S. and the individual challenges these
families faced.

After I left the office, I was standing with the others near the side
entrance to the West Wing when Donald’s assistant caught up with me.
“Your uncle would like to see you,” she said.

Azar was still in the Oval Office when I walked back in. “Hey, pal,”
Donald said. “How’s everything going?”

“Good,” I said. “I appreciate your meeting with us.”

“Sure, happy to do it.”

He sounded interested and even concerned. I thought he had been touched
by what the doctor and advocates in the meeting had just shared about
their journey with their patients and their own family members. But I
was wrong.

“Those people . . . ” Donald said, trailing off. “The shape they’re in, all the expenses, maybe those kinds of people should just die.”

I truly did not know what to say. He was talking about expenses. We were talking about human lives. For Donald, I think it really was about the expenses, even though we were there to talk about efficiencies, smarter investments, and human dignity.

I turned and walked away.

https://time.com/7002003/donald-trump-disabled-americans-all-in-the-family/

--
"And off they went, from here to there,
The bear, the bear, and the maiden fair"
-- Traditional

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