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Dear Fellow Advocates,
I want to take a moment to get personal in this newsletter and share a story that recently impacted me. Last week, I found myself at my local nail salon - a small indulgence I allow myself amidst the chaos of life. As many of you know, being a working parent is no small feat. During the winter months, when the coughs, sniffles, and fevers seem endless, it can all feel overwhelming. I’m sure many of you can relate to juggling so much at once while still trying to find a moment to breathe.
I was sitting in my usual chair, enjoying the calming process of getting my nails painted a festive Christmas red by the wonderful Ms. Cathy, when a conversation two chairs over caught my attention. A woman was speaking loudly, her words cutting through the salon’s soft hum. My ears perked up when I heard her mention the word autism.
As many of you know, I have a child on the spectrum, so hearing that word immediately struck a personal chord. The woman was blaming her daughter for her grandchild’s autism, saying it was “her fault” for vaccinating the baby. My heart raced, and I felt anger bubbling up inside me. At first, I stayed quiet, hoping her words might take a softer turn - but they didn’t. Instead, she continued, saying those with autism “don’t really have a place in society.”
That was it. My hands were shaking as I gathered the courage to speak up. “Everything you just said is absolutely not true,” I said, my voice steady but firm. The entire salon fell silent, heads turning to look at me and then back at her. She didn’t stop. “I saw it on Facebook,” she insisted, “and there’s no other reason my grandchild would have it - no one else in our family does.”
I took a deep breath and calmly replied, “The CDC ruled that out years ago. And honestly, I feel for your daughter. I can’t imagine how hurt I’d be if my own mother spoke about me like that, especially in public.” The words hung in the air, and for what felt like 3 days, no one said anything. This wasn’t just about me or my child; it was about every individual with a disability and every family who has ever felt judged or blamed by ignorance like this. The Arc of Illinois is comprised of (in my humble opinion) the hardest working parents in show business! Being a parent to a child with a disability already comes with so much - fear, guilt, and pressure that we carry quietly every day. Comments like hers, rooted in misinformation and judgment, only make that weight heavier.
Moments later, a woman sitting nearby in the pedicure chair chimed in, “I was a special education teacher for 30 years, and everything you’re saying is wrong. Children with disabilities have every right to be in society!” My heart swelled with warmth as I realized I wasn’t alone. In that moment, we were united - not just as individuals, but as voices rising together to defend the dignity, worth, and place of all people in this world.
That moment stayed with me. It was a powerful reminder that when we have the courage to raise our voices, especially when it feels uncomfortable, we create space for others to do the same. The great activist Maggie Kuhn once said, “Speak your truth even if your voice shakes.” And that’s exactly what I did. When I spoke up, her voice followed, and it reaffirmed a truth I carry in my heart: never underestimate the power within you to make a difference.
Life is hard enough, especially this time of year when so many of us are carrying grief, stress, or burdens no one can see. This Christmas will be my first without my sister, Danita. My heart aches every single day, and I know I’m not alone in feeling that loss. We’re all human. We’re all navigating something.
So I want to remind you: your voice matters. When you speak up, you inspire others to do the same. You create ripples of truth, courage, and connection that go further than you’ll ever know. Whether it’s in a quiet room, a crowded salon, or on a public stage, don’t let anyone silence you. You are powerful. You are worthy of being seen, heard, and valued for exactly who you are.
Let’s choose kindness. Let’s speak the truth. Let’s raise our voices together and never underestimate the change we can create when we stand united.
Happy Holidays to you and yours!
Truly, Samantha Alloway Executive Director, The Arc of Illinois
Thank You Chinese American Association for the Autistic Community (CAAAC)!
Pictured: Panelists at the CAAAC Conference
The 2nd Community Conference of the Chinese American Association for the Autistic Community (CAAAC), "Advocacy in the Chinese Autistic Community" was held on December 14th.
Our Board President, Kimberly Johnson, was asked to also participate in the Panel on Policy Advocacy in the Asian Community alongside Rep. Theresa Mah, Ben Feng (NY), and Monica Chen.
Pictured L-R: Monica Chen, Kimberly Johnson, Rep. Theresa Mah, and Ben Feng (NY)
Pictured L-R: Theresa Mah, Illinois State Representative, and Kimberly Johnson, Board President, The Arc of Illinois
Distinguished speakers in the Conference included:
Grace Hou, Deputy Governor, Illinois
Theresa Mah, Illinois State Representative
Connie Kasari, Distinguished Professor, UCLA
Andy Shih, Chief Science Officer, Autism Speaks
The conference successfully brought together community leaders, scholars, family and self-advocates, and service providers from leading organizations.
The event was a resounding success!
The 23rd Annual QIDP Leadership Conference
January 28, 2025
Virtual Webinar through Zoom
Brochure and Registration information coming soon!
Your Advocacy Matters!
Pictured L-R: April Mcclees, Carole Rosen, State Representative Bob Morgan, Hector Renta, John Porter, Greg Walkington
Join us for our upcoming virtual meeting on Thursday, December 19, 2024, at 3:30 PM Central Time!
GHC participants' Hector Renta, April McClees, John Porter; the Family Transition Project Greg Walkington; and Advocacy Program Specialist, Carole Rosen, will be discussing their advocacy efforts in Springfield. We’ll also be reviewing our upcoming legislative priorities and advocacy opportunities.
We look forward to connecting and sharing some holiday cheer!
Once you’ve registered, you’ll receive a confirmation email with details on how to join the meeting.
Refer to the graphic below for step-by-step instructions or reach out to carole@thearcofil.org if you need any assistance.
Pictured L-R: Dr. Kim Fisher, Carole Rosen M.A.I.D, C.A.P.S
The 2024 TASH Conference in New Orleans was a Tremendous Success!
Over 725 people attended the 2024 TASH Conference in New Orleans. At the conference, Going Home Coalition’s Carole Rosen, Dr. Kim Fisher, and Sarah Ballard from Illinois State University led a presentation on Grassroots Supported Civic Engagement and creating systems change through advocacy via a digital platform.
Our breakout session focused on continuing to emphasize awareness and accessibility as we advance the mission and vision of the Going Home Coalition.
It was an incredible opportunity to learn from innovative leaders across the country, and we’re excited to bring those ideas into the impactful advocacy work you’re all doing!
As I spoke about the achievements of Going Home’s participants, I expressed how proud I am of everything we’ve accomplished together!
Pictured L-R: Alixe Bonardi, Carole Rosen, Laura Bernas
It was wonderful to connect with our Grassroots Project collaborators from HSRI at the conference and during the breakout session.
Back Row: Gia Super, Carole Rosen, Tia Nelis
Front Row: Jan Bergman, Allan Bergman
Honoring Excellence!
Celebrating Allan Bergman’s Lifetime Achievement Award!
Allan Bergman was recognized at the TASH Conference with this prestigious award. Congratulations on this well-deserved honor! Your profound impact on the Developmental Disabilities community is truly inspiring. Thank you for all you do, Allan!
The Arc of Illinois 75th Annual Convention
Hybrid Conference on April 22 - 23, 2025; Marriot in Bloomington-Normal, IL & Virtual Webinar through Zoom
Brochure and Registration information coming soon!
Do you know someone who makes a difference every day in our community? How has this person, organization, or program supported The Arc of Illinois' mission? In what ways have they enhanced the lives of individuals with intellectual and developmental disabilities? If so, celebrate your hidden hero by nominating them to recognize their outstanding dedication and accomplishments!
Join us monthly for virtual sessions with local Illinois Legislators! These sessions provide an opportunity for you to submit questions, discuss key issues affecting individuals with intellectual and developmental disabilities, and help shape policies for a better future. Don’t miss out!
We’re thrilled to welcome Representative Michelle Mussman for our first session in January!
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