Cheryl Chan

photo: Laura Dumont Photography

I Will Use My Rage for Him

Cheryl Ryan Chan is a change agent. A mom with a mission. A woman who crowd-sourced anger and used it as a tool for accountability. She figured, if the courts are going to fail to protect her son with intellectual disabilities from his abuser, then she’s going to have to just change the law. If you want something done right...

I want to preface my story by acknowledging that this is The Advocacy Issue, but it’s more of a story about identity, but I missed that issue because I was having a colossal internal argument with myself about whether to write about this because I know it is a powerful story and one that may evoke a powerful response from readers. To say I’m not ready for that doesn’t really match up with my character—with my identity. Everyone who knows me knows that I don’t walk away from a challenge. They know I am a leader, an outspoken critic who loves as deeply as I call people out.

A good friend introduced me at a conference before a speech I made and said, “You know the term ‘call a spade a spade’?  Well, Cheryl sees a spade and calls it a fucking shovel!” So, it’s weird that I hesitated to write this. My identity is inextricably entwined with this story; I have no identity without the journey I’ve had over the last 30 years as Mom to a man with severe autism, so I guess this does fit. And I’m now ready. Let’s do this.

“If anyone touched MY kid, I’d kill them!”

I always try not to roll my eyes and I just take a deep breath and nod. That kind of response is typical when they hear my story—just not very helpful.

As if I hadn’t thought of that. As if I haven’t executed the people involved in my son’s abuse in my head thousands of times.

Anyone with kids in their life gets the emotion behind that kind of statement. If you love someone who is vulnerable, you get it. Aging parents, very young children, someone with mental illness navigating the “service” and medical worlds; all of us get it at some level.

The emotion is real. BELIEVE ME. It’s rage—nothing more, nothing less, and as you’ll learn here, rage is a wonderful, powerful emotion. I live with it and I’ve learned to embrace it as a strength. I have embraced it since the day I found out Nicky, my profoundly autistic, intellectually disabled, non-verbal son, was brutally beaten by a caregiver at his adult day program while another caregiver looked on.

It was spring of 2014. I had already been told what happened with his caregiver. I knew I was going to get something in the mail from the Massachusetts Disabled Person’s Protection Commission (DPPC) with details of their investigation that a caregiver at Nicky’s day program had been found with drug paraphernalia while working with my son. I received a phone call from the provider agency that they filed the report, per the state mandate. I was prepared for that envelope. It was weird when there were 2 envelopes in the mail that day.

The first one I opened was just what I was expecting, but having never seen it in this report format I took my time reading it. Ok, there’s the investigator’s name, date, and time of the investigation. There’s the summary of the reported allegations. They’re using some acronyms I don’t know so I’ll look those up. Yep, it says drug paraphernalia was found on the guy after returning from a community trip with my son. Ok, the guy denied it but a witness testified to seeing it at the program. The investigator’s finding is that the allegation is considered “substantiated,”  meaning, it probably did happen. Ok, and at the bottom here is the recommended action: fire the accused, basically. I knew this had already happened because the agency had already done it. Ok, got it.

When I opened the second envelope, my world shattered.

The description detailed in the second report is too horrifying to repeat, and I would lose you, dear reader, to the rage you would feel. Abuse of someone you love is top among the nightmares we all list. I’m pivoting for this story because it’s about being raw; and while the details of what happened to my child are about as raw as it gets, this is supposed to be my story. Which, right now, is a story about rage and this is the moment it begins.

****
I hadn’t been told about this second report. As it turned out, the allegations of abuse came out during the drug investigation. The witness decided to spill everything she had been hiding. The provider agency didn’t even know about it (side note: they should have and they remain culpable as far as I’m concerned).

I’ll never forget holding both reports, completely in shock, still trying to figure out why I had 2 reports, not 1; and even more importantly, how could what was described have possibly happened to my son?

I remember the wind being knocked out of me as I read those papers.

I remember being unable to speak.

I remember a feeling taking over my entire body.

I was shaking.

My heart was racing.

My mind was racing.

I called DPPC because I had one question that hadn’t been answered in their report. The woman on the phone was warm and knowledgeable. She expressed her relief that these people would no longer be working with my son. That was when I asked, “Yes, but what mechanism is in place to prevent them from applying for another job in another agency and doing this again?”

That warm, authoritative voice turned into a soft, apologetic whisper.

“There is none.”

“This is where I do believe my identity began to reshape. Instead of having moments of rage, I added pure, red-hot rage to who I am. ”

I carry it.

I use it.

I’ve learned how to manage it (most of the time). I hold it down until I can’t, then I let loose—privately, using all the words and threats and describing all the pain I’d like to inflict, and screaming at all the people I think are idiots and the machinations that have taken the place of humanity.

And then I go and figure out how to change shit. It’s what I do.    

I took my newfound rage and spent about a week doing research. My thoughts sprang to the same concept of the sex offender registry; we need a way to house the names of substantiated abusers and make it mandatory that providers check it before hiring. It didn’t take me long to find that several states had “abuse registries” just like what I envisioned. I made some calls, did some interviews, and armed myself.

Then I wrote a scathing letter to a bunch of state legislators—mine, the ones representing the towns where Nicky’s house is, the ones where the abuse took place, and where the agency is based.

I gave them a front-row seat to the disgusting description of the abuse. I told them about my phone call and my question. I told them that as we speak, the people who terrorized my son are likely walking around working with other people, high on drugs. I presented my research findings on what other states were doing. I told them Massachusetts needs an abuser registry.

Within a day, I got responses. Within a month, the Arc of Massachusetts, the largest and most powerful lobbying entity for our community, was involved. Not long after, I was asked if we could call the bill they were introducing “Nicky’s Law.” After some soul-searching, my husband and I said yes.

That decision was not as easy as you might think. I knew it meant becoming the face of this thing. I knew it meant I’d be contacted by media, I’d be asked to speak, and I’d have to be ready to advocate in front of all the big leaguers on Beacon Hill. I’d need to practice deep control over my rage and yet, I needed to show it. I also knew it would bring Nicky’s face into the public eye.

And there would be haters.

Can we protect him? Mercifully, he is intellectually unable to grasp what was about to happen, but that left us responsible for all of it. We decided that if Nicky could participate in the decision-making, he would want us to go for it. To fight for him and for those like him who rely on others to be safe. This was not just about Nicky.

****

“Want to know 3 of the best things about rage? It’s easily shared, easily spread, and easily fueled!”

Once dubbed “Nicky’s Law” the bill took on its own identity. I’ve been a part of the Massachusetts disability community for decades, and I’ve built a huge network of friends, movers, and shakers. I knew I could unleash a collective fury. I knew I had to take that very seriously and plan each move I made, each word I said, carefully.

Like I said, I needed to figure out the balance between showing my rage and managing it in public. If I allowed my rage to prevail over my actions, I could quickly have been reduced to an emotional, jabbering, “maniacal mom” on the news that had real meme-potential. That would not have served the mission.

I called up the troops using social media and word of mouth; the Arc did the same and the bill became one of their legislative priorities. Very quickly we had amassed an army. I told the story of Nicky’s abuse over and over and over again. My email, Messenger, and my phone were flooded with messages from other parents pledging their support and asking how they could help. Many were parents whose children had also been abused. As happy as I was about the attention this was getting, I began to feel the weight of those horror stories. I was sent photos, DPPC reports, and voicemails I could barely make out because of the sobbing.

I met another couple who happened to be working with their own legislators on a similar bill.  We joined forces. I met 2 others whose loved ones died under the care of their providers.

About this time, something began to change in me. Something almost scarier than the rage. I began to go numb.

The more I heard, the less I could respond. I took the stories in, I hugged the families, I gave them any advice I could. I did the substantiation that many had never gotten from their investigations. I validated their rage, but I stopped feeling it.

I think there were 2 reasons for this, one healthy and one unhealthy. The healthy reason is to protect myself and not absorb so much rage that I lose control; the unhealthy reason is that my brain was in a state of overdrive and parts of it felt like it was shutting down. I could barely conjure sympathy in my voice even though I knew I should. There’s my armchair self-diagnosis, but it feels like I’m right.

I wasn’t sure what to do with this, so I decided to just let it be. I had a job to do: get Nicky’s Law passed. I also had an army to command; they were standing at attention waiting for my orders and I knew they would’ve followed me to Beacon Hill with torches if I asked them.

Once the momentum was built, I was thrust—nay, shoved—into the lobbying circuit; as predicted, I quickly became the face and voice of the bill at several legislative events, hearings, testimonials, and even now in the form of workshops to help others learn how to advocate. That was ok. I’m comfortable there and it gave me a way to channel my rage.

Except the rage raged on. For 6 years. Yep, the bill dubbed by lawmakers as a “no-brainer” still took 6 years to finally become law.

The speech that brought it all home was the one I gave at Autism Awareness Day in 2019 at the Boston Statehouse. The Great Hall was packed with families, caregivers, agencies, and supporters from around the state, as this annual event always is. I had a speech, but it was the second version; the first version I had written was deemed too rude or fiery or over the top or something—I suppose I had allowed my rage to dictate; so I was told to tone it down and had reluctantly done a rewrite. But I wasn’t really feeling it.

Just before I went up to the podium, the speaker ahead of me had given a budget update that was exciting for our community. I was a little annoyed that I was following a speech all about money and services; I was about to make a plea for something much more important in my mind. I grabbed a pen and scribbled a final line on my printed speech and headed to the podium.

I managed to not cry for the first 3 seconds, a big improvement for me. I stood there and allowed my rage to enter; that now-familiar companion that both buoyed and tried to weaken me at any given time. Five years had gone by since my son had been beaten and this fucking bill was still not passed. I wanted to call upon the rage that had been ready to leap off the page in the first version of my speech. Now I felt like a caged, gagged prisoner of war forced to read a prewritten statement to make everyone feel better about Nicky’s abuse.

But I got through it. And at the very end, I looked up and realized they couldn’t stop me now.  I glanced at my scribbled note.

“Well, ladies and gentlemen, we just heard some great news about the budget. Isn’t that exciting? It really is. But we can’t take our foot off the pedal on this abuse registry, because this is not a bill about services and supports.”

I took a giant gulp and a deep breath, and I know my rage was heard.

“THIS IS A BILL ABOUT SOULS.”

Pin-drop silence. In my mind, it lasted about 20 seconds, but I think it was probably like two.

But the standing ovation did last a long time and united everyone in front of me in a way I’m not sure we can ever replicate. I had found the words through my rage that put it into perspective for everyone that day. We are all united by our humanity, and when abuse happens, it chips away at our collective humanity. Every single one of us can connect at that level. Every single one of us can close our eyes, and imagine someone we love being terrorized; beaten, hurt, abused—every single one of us can feel that rage.

Rage won that day.

Next legislative session, the bill passed unanimously in both chambers. Governor Baker signed it in February 2020. To date, the mandatory abuse registry checks have resulted in multiple abusers being blocked from caregiving roles. Legislation is now being considered to expand the registry to more vulnerable populations beyond autism and intellectual disabilities.  Nicky’s Law is saving lives.

My life is forever altered, but it’s Nicky who carries the real scars and trauma. I’ll always have those daydreams where I walk up to his abusers and have my revenge. I think that’s normal.  If it’s not, I don’t really care. It’s my normal. I carry the rage but it doesn’t define me. What defines me is what I did with it.

I had a different identity before motherhood and my journey with my son. She was kind of a bully without a purpose. Now I identify as a leader, a guide, a mentor, a good friend, a loving woman. I love who I am. My soul is full of joy, courage, pride, and beautiful, sweet, ever-burning RAGE.

Cheryl Chan is a Community Builder, policy advocate, person-centered practitioner, trainer, and frequent public speaker on topics that affect people with disabilities and their loved ones. Her advocacy and creation of Nicky’s Law and her long-standing commitment to the autism and intellectual disability community in New England has branded her a leader and advocate recognized around the country. “My next step,” she says “Is a federal abuser registry to protect all vulnerable populations who rely on caregivers for their health and dignity of life.”