I have been asked by a lot of friends to describe the event my son and I attended at the White House in April in support of caregivers—how it came about that I was there, how it came about that my son Nicholas was there, and how it went.
“It was fun!” is apparently not an adequate answer. (But it was fun!)
I’m catching up now with a little bit of story and a bunch of pics for those of you who are interested.
And for those of you who aren’t—well, slide down to the bottom of the post for a very lovely video of Nicholas juggling in Washington just before we flew out.
Also: My apologies to friends and colleagues in D.C. who I didn’t reach out to at all. I didn’t want to inconvenience you at the last moment. We’ll be back.
Prior to the event I wrote an article with my own thoughts about caregiving, specifically for people with intellectual and developmental disabilities, that you might want to read.
The Invitation
First of all, it happened fast. I was invited by email on Friday, April 14, at 1 p.m. for “an event in recognition of Family Caregivers, Early Educators, and Long-term Care Workers to be held at the White House on Tuesday, April 18, 2023 at 2:00 p.m. Tuesday, April 18.” An invitation was then extended to my son Nicholas, who is intellectually disabled and autistic, on Sunday, April 16 at 4 p.m.—again, for an event that Tuesday in D.C.
On both invitations, the subject line began: “Invitation from The President for an event.” Which is definitely neat.
That’s the short version. The longer version is that I’d been having conversations for a couple of months about two different advocacy opportunities in Washington, one involving the White House. Some of that communication happened directly with staff at the institutions but it all originated with, and much of it occurred through, The Arc of the United States.
The Arc’s really dedicated, smart, knowledgeable, and kind staff has a fabulous, authentic approach around—and intention for—centering people with intellectual and developmental disabilities and their families in its advocacy.
Both opportunities originally involved speaking, which was exciting to me. I have some things to say, perhaps. The White House event, specifically, was intended as a roundtable about caregiving, at least preliminarily.
That’s why I had introduced the idea of Nicholas going with me. Talking about caregiving—about strengthening the programs, supports, and services for people with intellectual and developmental disabilities, about appropriate, desperately needed increases in wages and respect for Direct Support Professionals, and about family caregiving—is much more effective and impactful if the person I’m usually talking about in the context of his, my, and our personal story is there in real life, instead of a hypothetical character being talked about.
The White House event was intended to be a roundtable all the way up into the week I received the invitation. And if it actually happened—which was entirely in question, to be sure—it was going to be on Friday, April 21.
On Thursday, April 13, the day before I received the invitation from the White House, I was in communication with The Arc team. The event—again, if it happened, still very much an “if”—was now going to be on Wednesday. And it was no longer a roundtable but simply an “event”—with the agenda still being determined.
So everyone was surprised when I received an invitation from the White House the next day, on Friday, for an event now on Tuesday, just a few days away. And with the invitation, the event was clarified, somewhat anyway, as being “in recognition of Family Caregivers, Early Educators, and Long-term Care Workers.”
Even as I said yes, I recognized the invitation was explicitly just to me and not for Nicholas. Although I do a lot of advocacy beyond Nicholas and my family—most of it, really—any recognition of “family caregiving” involves us both. Especially in terms of emotional and psychological well-being, Nicholas cares for me at least as much as I care for him.
That truth is something people need to know: People with intellectual and developmental disabilities aren’t just being acted upon—they are actors, making an immeasurable difference in the lives of the people they love.
The staff at The Arc understood. They reached out to the White House to see if Nicholas could still be invited, and with their guidance I did directly, as well.
The White House was terrific in getting it done, even at this late date. Anna Perng is Senior Advisor, Office of Public Engagement—including specifically overseeing aging and disability community engagement—and she really checked in about Nicholas and made it happen. She was great.
Nicholas received his invitation Sunday afternoon at 4 p.m. And after, somehow, four RSVPs of forms and information between me and Nicholas, we were a go.
With the financial support of The Arc, we were headed to D.C. on Monday for a White House event on Tuesday.
Business attire required—and that had the bulk of my attention, since I now didn’t have to prepare remarks: getting suits and dress shirts for me and Nicholas to D.C. in good enough shape to be wearable the very next day.
(With a lot of overnight steam in the Washington Plaza Hotel bathroom, that worked out well enough!)
The Event
[Click on any photo to open up a larger version and to scroll through the mosaic set.]
The Rose Garden event was a speech by President Biden and the signing of an extensive Executive Order in support of an array of care workers and caregivers—Direct Support Professionals, family caregivers, early childhood educators, childcare and long-term-care workers, and more—and in support of the people they care for, among them disabled and intellectually disabled people, the elderly, and children.
Nicholas and I started the day at The Arc’s D.C. offices, met staff, and discussed policy and policy advocacy for people with intellectual and developmental disabilities in the United States at the federal and state levels. We also shot some videos of me and Nicholas for possible use in advocacy by The Arc.
We first heard about the Executive Order that morning. That was the point at which I felt confident the President would be at the White House event—until then it still hadn’t been clear what the “event” was going to be.
We walked over to the White House with Julie Ward. Julie is The Arc’s Senior Executive Officer, Public Policy—a real policy expert, obviously, and entirely lovely. She attended the event, as well.
We went through a couple of security stations and checks and, of course, a scan. We then walked through a section of the White House with portraits of several First Ladies, a bust of President Lincoln, and musicians playing violins.
Going to the Rose Garden, we walked in front of the White House South Portico. When you look out across the South Lawn, the view includes the Washington Monument and Jefferson Memorial. We took a few photos, chatted a bit with Secret Service agents, and then went into the Rose Garden.
It was buzzing with people finding seats and one another and lots of news media getting set up. Oh, look, there’s Secretary Becerra! (Xavier Becerra is the Secretary of the Department of Health and Human Services.) And here comes former Speaker Pelosi—now we *really* know the President will be speaking today!
As me and Nicholas wandered about looking for a place to sit, White House event staff assisted and almost placed us in the second row of the left side, facing the podium—which would have been immediately behind where former Speaker Pelosi sat 20 minutes later—but a discussion ensued and that was nixed. Eventually they were able to find seating for us on the right side, fourth row, toward the center.
There were heads of agencies and policy experts throughout the Rose Garden audience, and also Direct Support Professionals, other caregivers, and advocates.
President Biden had a prepared speech and also went off that script and spoke extemporaneously. I felt he was energized by, and enjoyed connecting with, the DSPs in the audience, including Black women and other women of color—a fair representation of the people who really do the work, who are disproportionately women of color.
Some highlights from the President’s remarks:
- “We’re here today to take action on an issue that’s fundamental to who we are as a nation, who we are as a country: How do we treat the people we care so much about, who need the most help—our children, the people we love, people with disabilities, including veterans? And how do we value those caring for them—childcare workers, nurses, home care workers, family caregivers?”
- “Under this order, almost every federal agency will collectively take over 50 actions to provide more peace of mind for families and dignity for care workers—who deserve jobs with good pay and good benefits.”
- “Pay for care workers is too low. And that’s why so many are leaving the whole endeavor. In fact, half the long-term care workforce and nearly 20 percent of the childcare workforce leave their jobs each year, making it even harder—harder for families to find the help they need. And family members are too often forced to leave their own good jobs behind to stay home … (In) the United States of America, no one should have to choose between caring for the parents who raised them, the children who depend on them, or the paycheck they rely on to take care of both.”
- “Care work is demanding, as many of you in this audience know. It requires serious skill, but these workers are among the lowest-paid workers in the country.”
- “We’re using the power of the federal government to get companies to do what’s good for their workers and, I might add, good for business as well. … Folks, care workers deserve to make a decent living, and that’s a fight I’m willing to have.”
And, especially movingly:
- “I get it. I was a single parent for five years with two young children after my wife and daughter were killed in an accident. Thank God I had family to rely on. … My sister, my brother, my brother-in-law, my mother, they all chipped in. My sister and her husband gave up their home and moved into where I lived just to be there to help me with my kids. Folks, you know, I couldn’t have done it without their help. I couldn’t have made it. … I often ask myself what in God’s name would I have done—not a joke—had I not had the family I had.”
And he concluded:
- “So may God bless you all. And may God bless our caregivers. … I’m about to sign an executive order increasing access to high-quality care and supporting caregivers.”
And then he did.
A little event post-script: as we were exiting, we were taken through that same section of the White House we had been in earlier. Just as we were about to make our way through, an agent at the desk near us ordered a security lockdown—the doors in front of us were locked, as were the doors way behind us. There had been a radiation detection, and a lockdown was ordered—and maintained for 20 or so minutes—as agents tried to determine the cause.
Nicholas and I weren’t really worried, though. We were still meeting people—”Hi, I’m Ray, and this is my son Nicholas. Who are you?”—and taking selfies.
After we were released, we caught up to Julie Ward, who was waiting by the White House gate; checked in by phone with The Arc’s Director of Communications, Jackie Dilworth, about the event; and Air Dropped photos to one another with Julie after walking back to The Arc’s offices.
Then Nicholas and I headed to the hotel so Nicholas could take a much needed—and well deserved—nap. He had a great, exciting time. He met a lot of fantastic, interesting people, and he got to be up close with the President of the United States at the White House. It was all thrilling—and a lot for him.
We flew back home the next day.
[Click on any photo to open up a larger version and to scroll through the mosaic set.]
The Thanks
There are a few big things I want to say before I finish.
First, I was invited, really, because of my advocacy work and work with caregiving organizations and organizations that support caregivers, especially in disability, intellectual disability, and mental health.
To me, when I was in the White House and in the Rose Garden, I was representing all the people who I’ve worked alongside in many organizations, including all the people involved in the Consumer and Family Advisory Committee (CFAC) at Vaya Health and across North Carolina; the staff and families that for more than a dozen years attended and put on group nights and offered family trainings and support at Family Support Network of Western North Carolina; the staff who care for people with intellectual and developmental disabilities at Liberty Corner Enterprises and, earlier in my career, FIRST Resource Center and what was then called Western North Carolina Group Homes for Autism; and other people and groups, as well, including especially all the Direct Support Professionals who we’ve known and who have supported Nicholas and other people with IDD in our community, state, and country. Goodness knows, I was thinking about you all the whole time.
I have served on boards, advisory committees, and human-rights committees in these organizations. It was humbling thinking about all these people, usually very underpaid if they were paid at all, doing so much good work over so many years.
I felt even just the invitation I received was genuinely a tribute to the work of all of you and an expression of gratitude for all of you.
As well, my son Nicholas was representing all the people who you support, and we were thinking about all of them, too, and we talked about it.
Second, I am deeply grateful to The Arc of the United States and to White House staff for so much support and for the invitation. I spent the morning with people at The Arc—among them, Claire Manning, Senior Director, Advocacy and Mobilization; Jenny Alexander, Director, National Initiatives; Darcy Milburn, Director, Social Security and Healthcare Policy; and Amanda Guerrero, Senior Manager, Digital Marketing, as well as Julie Ward—and they all blew me away with their intelligence, professionalism, kindness, and deep commitment. This is life work, the stuff of a good life—supporting and championing intellectually and developmentally disabled people, who have been so discriminated against and harmed in the history of this country, yes, but also across the entire history of humanity.
And I’m grateful to all of the White House staff and, especially, Anna Perng, Senior Advisor, Office of Public Engagement in the Executive Office of the President. Anna, again, worked to get an invitation for Nicholas. We were able to meet after the event, and I felt she really connected with him. All the White House staff were very respectful of and kind to both the caregivers and the people they support, as represented by those of us at the event.
Finally, I am a lifelong registered Democrat, but I try to approach my advocacy in an authentically nonpartisan way, both at the state level and the federal level. In North Carolina, some of the elected officials—really, most of them—interested and engaged in better supporting people with intellectual and developmental disabilities are Republicans. So, from personal experience in policy advocacy, I reject assumptions that all Republicans are hostile to improving the IDD service array and that all Democrats are supportive of it or even have any interest in it.
These common assumptions affect advocacy strategies in self-injurious ways. Virtually every demographic or political-alignment group has people with intellectual and developmental disabilities in it. The best solutions for supporting, including, and championing the population most fully in communities and across the nation will involve everyone. That has to be part of our messaging and our strategic planning.
Still, without any hesitation I really want to say very clearly: on this day, President Biden—the President of the United States, at the White House—centered people with intellectual and developmental disabilities, other disabilities, and other vulnerable people who need care, as well as all the people who support them, in their work, in their family, and in their community, as part of their community.
I cannot express adequately how moved and grateful I was that President Biden made this choice, to see people who mostly are not seen, to recognize them and say they matter, to take action and encourage action.
I want to thank the President deeply.
I hope I would do so whether or not I was in attendance. But it *was* especially cool—and fun—to be there, and even more so to be there with Nicholas, my amazing son, who I care for and who cares for me.
I hope this can become a new start and a fresh commitment for the work that needs to be done at federal, state, and local levels to support some of our most vulnerable citizens—and to recognize and support all the people who help care for them.
The Bonus Video
Here are some articles and posts I’ve written recently, as starting points for reading more about related topics:
- Autism and IDD: Caregiving, Advocacy, Community, and Love
- No “Because” but Love—Intellectual Disability, Identity, Representation, and Value
- Autistic Isolation, Connection, and Joy: Never Miss Dessert
- Autism Acceptance—and Celebration
- Autism Adulthood: Caring for the Future and the Present Moment
- Definition as Destiny: Breaking Autistic Boundaries
- Poppa, Do You Have Autism?
- My Talk at the 2019 Disability Day of Mourning
Ray Hemachandra at Golden Moon Circles 
I read this article and watched the video with great joy! Your participation at this White House event was well-deserved!
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I’m so glad you enjoyed it, and thank you very much for the generous words!
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Fabulous description of your Washington trip. Really enjoyed the photos as well. Thank you for all do for the IDD population, DSPs and family caregivers.
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That’s very kind of you. Thank you, Lisa Marie Carroll!
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SO awesome you and Nicholas were able to attend and represent such amazing action and change for support and they were lucky to have you! :)
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Thanks so much, CMB! I definitely started on that advocacy during the time you and I were working together—and you knew Nicholas back when he was a tiny little boy, fairly newly diagnosed as autistic, doing Legos on the floor. I miss those days, even as I’m glad for these days!
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I think this is my favorite juggling video to date! 😁🤹👍
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Oooh! Now he just might have to top that!
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