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 our journey with William, Lisa and I had become close to some truly inspiring parents and dedicated advocates who were doing amazing work to improve the day-to-day reality for families like ours. It’s a huge lift for caregivers, not to mention the constant need to mitigate expenses. There are so many different demands and challenges. But there are things that the government can do—some things that can only be done by the government, both federal and state. We wanted to bring knowledgeable people to the White House, to see if we could make a difference.
Lisa reached out to my cousin Ivanka, who was working in the White House as an advisor to the President. Ivanka got right back to her and said she’d be happy to help. She provided a contact for Ben Carson, the retired neurosurgeon who was secretary of housing and urban development. We brought several talented advocates with us for a meeting with Carson and members of his senior staff in April 2017. “Look,” I said as we got started, “I’m the least important person in the room.” I wanted the focus to be on the others, who knew a lot more than I did. They immediately started floating ideas, which was exactly why we were there. Our collective voice was being heard. It was a start.
Fred Trump and then-President Donald Trump in the Oval Office in 2018.Courtesy of Gallery Books, an Imprint of Simon & Schuster, LLC
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 emphasized how crucial it was for hospitals and other acute-care facilities to help patients transition from pediatric to adult services. We emphasized the importance of collecting sufficient data to explain medically complex disorders. This was not about more government spending. It was about smarter investing and greater efficiency.
We spent the next few months making calls and talking with officials and gathering our own recommendations, giving special attention to the critical need for housing support for people with disabilities. We were back in Washington in May.
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.
Sharp, direct, and to the point, Azar exhibited my kind of efficiency with no time to waste. His first question was, “OK, why are you here?”
I made a brief introduction. Our group included a leading doctor and several highly qualified advocates. What followed was a great discussion. Something clicked with Giroir—an idea for a program everyone could agree on that would cut through the bureaucracy and control costs and also yield better and more efficient medical outcomes.
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—Azar, Giroir, the advocates, and me. I never expected to be there so long. Donald seemed engaged, especially when several people in our group spoke about the heart-wrenching and expensive efforts they’d made to care for their profoundly disabled family members, who were constantly in and out of the hospital and living with complex arrays of challenges.
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. He told the secretary and the assistant secretary to stay in touch with our group and to be supportive.
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.
When William was 9 years old, Lisa and I met with Donald and a medical fund was created for William’s care by the Trump Family, a fund that was crucial to our ability to support him.
In the summer of 2018, William was in the hospital for almost three weeks with a serious case of life-threatening pneumonia. He was 19 and very sick. It was incredibly frightening for Lisa and me—and for his brother and sister too. It was always hard to know if moments like these could compromise his health to the point that we would lose him. These are the times that you reach for all the strength you have.
Fred, William, and Lisa in the NICU in 1999.Courtesy of Gallery Books, an Imprint of Simon & Schuster, LLC
William came home with oxygen and a feeding tube. After more than two weeks on a ventilator, he needed to learn how to eat all over again. We were too often in these setback situations, but you move forward the best you can.
It’s times like these when family support is most needed and appreciated. At every opportunity, we let my aunts and uncles know how grateful we were for the medical fund for William’s care and recovery. We sent pictures and updates, as we had in the past. We got no personal responses, which was the norm. It was the dedicated support and genuine love of caregivers that helped us the most.
Uncle Robert died in 2020, and the medical fund for William continued. It was enormously helpful with our home-care costs and medical expenses, and we were always grateful to my father’s siblings for contributing. But even before Robert’s death, their interest had seemed to begin waning. My cousin Eric, who was the administrator, called me to say the fund was running low. Donald was the only one contributing consistently. Eric said he’d been getting some resistance from Maryanne, Elizabeth, and Ann Marie, Robert’s widow. I really didn’t look forward to these calls.
“Why don’t you call Donald?” Eric said. “Talk to him about it.”
I thanked Eric for the heads-up and promised I would.
Soon thereafter, I was up at Briarcliff Manor, home of the Trump National Golf Club in Westchester, N.Y. Donald happened to be there.
He was talking with a group of people. I didn’t want to interrupt. I just said hi on my way through the clubhouse. I called him later that afternoon, and he answered.
I got him up to speed on what Eric had told me. I said I’d heard the fund for William was running low, and unfortunately, the expenses certainly were not easing up as our son got older. In fact, with inflation and other pressures, the needs were greater than they’d been. “We’re getting some blowback from Maryanne and Elizabeth and Ann Marie. We may need your help with this. Eric wanted me to give you a call.”
Donald took a second as if he was thinking about the whole situation.
“I don’t know,” he finally said, letting out a sigh. “He doesn’t recognize you. Maybe you should just let him die and move down to Florida.”
Wait! What did he just say? That my son doesn’t recognize me? That I should just let him die?
Did he really just say that? That I should let my son die . . . so I could move down to Florida?
Really?
I’m usually pretty good at getting my head around things that other people say, even when I don’t agree with them. But this was a tough one. This was my son.
Maybe I shouldn’t have been surprised to hear Donald say that. It wasn’t far off from what he’d said that day in the Oval Office after our meeting with the advocates. Only that time, it was other people’s children who should die. This time, it was my son.
I didn’t want to argue with him. I knew there was no point in that, not at the same time I was calling for his help. I tried to keep my cool.
“No, Donald,” I said. “He does recognize me.”
Donald’s comment was appalling. It hurt to hear him say that. But it also explained why Lisa and I felt so strongly about advocating for our son and why we wanted to help other people understand what it was like to raise a child like William. A lot of people just don’t know.
People with these disabilities are perceived as less than in so many ways. That attitude is everywhere, even at the highest levels of policy and politics.
William deserves a life just like anyone else, and to that end, I knew I had to advocate for him in every way possible. I might never change Donald’s mind or change the mind of anyone who lacked love and compassion for those whose voices couldn’t be heard and whose lives were fully dependent on others. But I knew what I could do. I could offer my voice, my experience, and my strength to push forward for those who needed it.
The barriers are everywhere, even in communities that are generally supportive, like ours. There are still doorways that can’t accommodate wheelchairs. It is still hard to find meaningful day programs that foster independence with learning, socialization, and assistive technology. The whole narrative still needs to change.
I knew that acceptance and tolerance would only come with public education and awareness. Donald might never understand this, but at least he had been open to our advocating through the White House. That was something. If we couldn’t change his feelings about William, that was his loss. He would never feel the love and connection that William offered us daily.
(Editor’s note: TIME reached out to former President Trump for a response to the description of events in this piece and did not receive a reply.)
Copyright © 2024 by Frederick Crist Trump III. From the forthcoming book ALL IN THE FAMILY: The Trumps and How We Got This Way by Fred Trump, to be published by Gallery Books, an Imprint of Simon & Schuster, LLC. Printed by permission.
Source link : https://time.com/7002003/donald-trump-disabled-americans-all-in-the-family/
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Publish date : 2024-07-24 08:01:16
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