Below is the script of my presentation, but you can now also watch the full video online!
I was honored to be asked to speak about my personal story as a woman and mother for a series presented by my son’s residential provider, Nonotuck Resource Associates.
Honored, but nervous as HELL. I got a little mix of vulnerability and imposter syndrome the moment I was asked. I have to talk about myself? I’m used to talking about everyone else LOL. Am I worthy? Why? What’s so special about me?
I dedicated this, as you’ll see at the end, to all the girls of any age who feel conflicted or made to feel like they are somehow “too much.”
When I received the email asking me to present today, it was such an honor and privilege right
away, I was thrilled. When I got the description of what Nonotuck was looking for, I knew the
stories that I wanted to tell. The timing of this is interesting, because I’ve been on a journey of
self reflection and self discovery for the past 3 years or so. this journey has been very healing in
a lot of ways because it has helped me be at peace with myself at the deepest level. This
journey has included research into everything from the psychology of personality to the
mysticism of astrology to studies about birth order. It’s not something I intended to do at all. I
did something stupid and broke my arm about three years ago, and had to cancel a whole lot of
presentations, workshops, trainings, and speeches I was scheduled to give. I had to rely on
others to do just about everything I always do myself. Over the course of healing from that
injury, I learned how to slow down. I learned that saying no to something doesn’t mean the end
of the world. I learned that others can do things for me as well as, or even better, than I can.
I’ve learned that I can receive with gratitude and not feel like I need to immediately reciprocate.
These lessons have not been easy for me to accept. I’ve always been fiercely independent, but
we all know that’s a code word that suggests someone who is challenging to deal with. When
it’s applied to a female, it carries all sorts of social implications doesn’t it? When we hear that a
woman is “fiercely independent” we roll our eyes and go “oh boy.” We are half impressed and
half unimpressed. It implies a woman who is difficult to deal with, probably overbearing,
slightly cocky, probably rude and possibly intimidating. I’ve been called all of those words.
I wish someone had passed on to me this bumper sticker wisdom when I was young that says
“well-behaved women rarely make history.”
Not as a child, mind you. It wouldn’t have made sense then. I was too busy being the sister boss
to my 3 younger sisters who were all several years younger than me.
I was in charge, and they happily obeyed. I participated in caring for my sisters from a very
young age; when you are given that level of responsibility you learn to make decisions without
consulting anyone. When your parents have 3 babies close together and you are older, you
have to make decisions on your own because there isn’t anyone available. But I can’t blame my
sisters for my penchance for being fiercely independent; interestingly, long before my sisters
were born, my favorite phrase I’m told was “I can do it all by meself.”
I was also too busy being poorly behaved. Ask the principal at my junior high school in
northeastern Pennsylvania. He couldn’t stand the fact that I was getting straight A’s while at the
same time being disruptive, argumentative and outspoken all day. He wanted to put me into a
box: that tidy, well defined social construct that stated that the bad kids we’re also the
dumbest, from the worst families, and with bleak future, but I was none of those. He was the
one who carried my desk to the back of the room, slammed it facing backward into the wall and
declared to everyone that I would spend the school year there, forbidden to speak or turn
around. The same guy who decided I needed a good public paddling – yes, with a real, heavy
wooden paddle. I don’t even remember why exactly, but I do remember being reminded by
everyone around me that I was “too much”; too loud, too disruptive, too opinionated.
To most people this sound humiliating; curiously, I have no recollection of being at all
embarrassed, ashamed, or remorseful. I suppose I should’ve been, but I wasn’t. Nor was I
particularly angry. I just didn’t care all that much about what others thought of me.
That’s one oddity that I still wrestle with; I don’t recall really ever being concerned about what
others thought of me. Any time I was rejected or scolded or told I was too whatever, I just
pivoted and did something else. I didn’t do it to be difficult, it just kind of bounced off me. This
is different from feeling remorse when I hurt someone or behaved badly; I always felt sad and
ashamed of myself, it just didn’t burden me long term. I admit that as a child, that probably
looked like I hadn’t learned my lesson. I think back now and realize how much that would have
driven some of my disciplinarian’s nuts.
My family moved and I started high school in rural upstate New York, I was greeted by the
popular girl squad quite warmly. That was cool. But I hadn’t even been there a week when they
called me over in the hallway and excitedly whispered and started pointing down the row of
lockers.
“That’s Amy’s boyfriend, Eric. Isn’t he gorgeous?”
I looked over, and saw the guy in question. Blonde, blue eyed, totally knew that the girl squad
was whispering about him.
I sealed my fate for the next four years of high school in that moment when I responded, well,
honestly.
“He’s cute, but I don’t know that I would say he’s gorgeous.“
Wrong answer. I was supposed to agree with the squad. I was apparently not supposed to have
my own opinion but I hadn’t gotten that memo.
Once word got around that I had fallen out of the good graces of the mean girls, I remember
deciding that I would embrace my new social status and create an outward persona that fit my
inward persona. I shaved one side of my head. I got a job at a little vintage clothing store and
worked for clothing credit instead of money. God, I had the best wardrobe. Nobody asked me
to the prom. Ended up going to the prom at another school, with their French exchange
student. That was the gateway to my interest in global cultures, and ultimately in one of the
most extraordinary experiences of my life; after graduating from high school, I became an
exchange student and sent to Japan for a year.
My experience as an exchange student in Japan was my first opportunity ever to take my rather
unbridled personality that had gotten me into so much trouble for so many years and turn it
into a strength. I was the only white girl in a school of 1000 students. To say the least, I was very
popular! Put on a pedestal and assumed to be straight out of Beverly Hills 90210, everybody
wanted to be my friend. I had to perform. I had to speak in public regularly, learn a new
language, live with host families, and there were countless number of times where my weird
inability to be embarrassed served me well. It was there where I learned to truly laugh at
myself, advocate, for myself, and maneuver through an entirely different culture with social
expectations and pressures. I had never experienced before. But none of that applied to me. I
was a rockstar for a year. I loved every minute of it.
Returning home and heading to college, this time in my life was the turning point where I began
to enter adulthood, and all that comes along with it: responsibility, self management, self
control, accountability, etc. There’s nothing special about that, we all go through it. But I
couldn’t help being myself. Within the first month of arriving on campus, I had created a
charter to establish the very first ever international student support organization. my senior
year, I was general manager of the campus TV station. And I became engaged to the man I’m
still happily married to.
My husband is of Chinese descent, born and raised in the Philippines; the other side of the
world both literally and figuratively. Back in 1991 and in the 3 years we had dated prior to that,
seeing mixed race couples was rare – We endured some pretty awful confrontations, we were
made fun of, asked inappropriate questions, and heard all the racial slurs. I didn’t care. I loved
(and still love him) fiercely with no thought for anything or anyone else.
Our son Nicky was born less than 2 years after we were married. His autism diagnosis came at
the very early age of just under 2. Back then autism was holding at a rate of about one in 2,500
children; a vastly different number than the 1 in less than 50 now. Once again, like when I
entered college and started a support organization for foreign students, I had to create
something out of nothing. I had to create a safe space; I had to carve out a community of
support. I had to find my people; other parents like us. I had to learn about what was
happening to our son. I had to navigate special education. I’ll never forget my first team
meeting. Nicky was in early intervention. My husband and I walked into the cramped room
and sat at the only 2 seats available at the long conference table. There must have been 12
other people there, all clinicians and educators and administrators. Within 10 minutes they had
gone all the way around the table in rapid succession, reading their “findings” and “analyses”
and “reports” in disinterested, droning voices. We were handed a single page with a signature
line and I signed it. Everyone began to leave and I hadn’t had the chance to say a word, nor had
I been invited to say a word. I blurted out “we give him a lot of love at home!” Nobody even
responded. Nobody cared.
If I had to point to the moment that I had my life’s biggest epiphany, it was that moment. I was
so humiliated, I had zero control over anything, I wanted to scream. I felt alone and I felt like a
failure. I felt like I had failed my son. I was SO angry at myself. This wasn’t like me; I walk into
a room and I take over wherever I go. I make things happen. I’m always in charge.
I had a flashback like they describe in the movies, where your life flashes before your eyes.
THIS is why God gave me the personality I have. THIS is why I am “too much.” Cheryl the
behavior problem, the performer, the loud-mouthed big sister, the organizer, the social rule
bender, the defiant student; all of that was the runway for this next journey. It has all been to
prepare me to be Mom to this baby boy who needs a Mom who is a fighter. Who has all the
love and zero fucks to give.
That epiphany I had back at that first team meeting for Nicky has carried me through all these
years since that earliest team meeting. I think about it all the time. It strengthens me. My
faith in God keeps me strong, too; my belief that I’m on the path intended for me helps me feel
like I’m exactly the way I’m supposed to be, that I’m doing what I’m supposed to be doing. As a
young girl I couldn’t possibly have known that my personality that so many tried to subdue was
going to make me a leader someday.
But for all the picture that I’ve painted for you of a born badass, as a child and sometimes even
now I struggle with self-confidence. Hearing from the adults in my life that I needed to be less
of, well, everything. I was constantly fighting an internal battle with the me who wanted to
conform and be well-behaved with the one who had something important to say or change.
Truthfully? That internal battle rages on even today. It followed me into my entire adulthood.
Against many odds, I’ve managed to shape it into a force for good. Most of the time. But it has
also built some walls in relationships. It has turned people off. It has made me walk away from
situations and it has caused me to be invited to walk away.
I remember I was invited to a company party with a friend one year – I was her plus one and
was honored to be asked. In the car on the way, she heaved a big sigh and did her best to
politely ask me “not to be so me.” She didn’t need to explain; I knew exactly what she meant.
It hurt, but it was a familiar pain.
I channeled my ferocity for many years into being an uber-volunteer at one of the autism
support centers. It was during those years that the struggles we had with Nicky were at their
worst, and which ended in hospitalization followed by institutionalization. I was often asked to
speak to parents whose children were new to the center, until one day I was told that would no
longer happen because I was scaring people. I was once again “too much.” My story, my son’s
story, were too difficult.
I was asked several years ago to speak at the State House during an annual autism event. The
hosting organization asked me to send them my speech in advance, under the guise of needing
a word count – my suspicion that they just wanted to screen me as my reputation had
preceded me was right on the nose. I got a call telling me there was no way I was going to be
allowed to use that speech. I had to rewrite a “gentler” version that was less agitating to the
legislators so they weren’t offended. I rewrote it, got approval, and then at the end when I was
at the podium I improvised the final line. That last line prompted a 2 minute standing ovation
and an apology from the Director.
That was during the years that the fight for Nicky’s Law was going on. That long 6-year battle
felt more like 60 years to all of us. I was asked to be the face of the campaign because I was
Nicky’s Mom. I had to tell the story of his abuse over and over again. People have asked me
many times how I could do it without breaking down every time. I always say I didn’t, I’d do it
privately, but the truth is, I know it’s because I am who I am; that I had a lifetime of practicing
for the strength I needed to keep telling the stories.
Sometimes my over-the-top personality can be a force for good. Sometimes my ability to avoid
internalizing and holding onto too much emotion has been a source of personal strength and
resilience. And while, like I said, it has made me walk away or be asked to leave the room, it
has also made me walk toward situations many would run from.
We are coming up on the 10th anniversary of the day the world lost Andrew. Andrew was
Nicky’s age and Nicky’s on-again, off-again roommate at the residential program for severely
behavioral children with disabilities where Nicky spent 5 years. It had been years since Nicky
had left there and I hadn’t thought of Andrew in a long time. I got a call from a former staff
person I hadn’t spoken to in several years late one night, telling me Andrew was in the ICU at
UMASS in Worcester. He was alone, having been taken to the ER by group home staff. The
circumstances of his head injury are still a mystery, but 4 days after being admitted Andrew
took his last breath as I held his hands and sang him one of his favorite Journey songs. It was
just Andrew and me. A short time later I drove home, but a friend who I had been texting with
updates on Andrew insisted that I meet her for a drink, certain that I shouldn’t be alone. I was
so much at peace it was disconcerting to my friend – it was almost like I was consoling her
instead of her consoling me.
It was 3 years later that, alone in my living room, a wave of grief washed over me and I cried for
Andrew for nearly 2 hours.
I am now an aging, wise woman. I have had 55 years of experiences that have made me who I
am. I did a quick Google search in writing this and found something that expresses the wisdom
of recognizing how our experiences shape us.
“Past experiences are the things that have made up our life up until this point. They are
positive and negative events. They are both one-offs and the things we do day in and day out
that become ingrained in us. They are of vital importance to our happiness and wellbeing. We
need to understand them and how they impact what we do now, in the present, in order to live
a happy and fulfilled life.”
As an aging wise woman, I encourage everyone to take their own journey of self-reflection and
learn from their personal experiences. But we cannot forget about our collective experiences
as members of society. The experiences that may not appear within our personal consciences
because they are so ingrained within our culture that they go often unspoken and
unrecognized. One of the things I keep talking about today is that struggle I live with about
being “too much.” Now I look at that bumper sticker, well-behaved women rarely make
history, and I ask myself “who decided the definition of well-behaved?”
Women have been defined in the context of a male-dominated culture for as long as history.
I’m not going on a man-bashing rant, I promise (although I’m struggling not to). Expectations of
behavior have been based on women being subservient to men, therefore any woman who has
a personality like mine is often labeled as poorly behaved because (in my typically unsolicited
opinion) it is threatening. It’s threatening to people in charge, often men, and it’s threatening
to the norms that pervade our societal structure.
I pretty much just triggered myself by using the term “labeled.” Labeling is something used a
lot in the vernacular among the disability community. It is a practice that causes a lot of
dissention and argument because there are those who believe labeling is harmful and devalues
individuals. Then there are those who believe it to be necessary to provide explanation and
promote understanding within the larger society. I understand both sides of the arguments,
but I believe it to be unfortunate all around because it still is something we do for the sake of
making non-disabled people more comfortable, with no benefit for those living with
neurodiversity or disability. But I digress.
The idea is the same when I think about labeling women. We use labels for women in every
conversation. When a woman is introduced or described, it is always accompanied by a string of labels:
confident, beautiful, forceful, fierce, unstoppable, the dreaded “super woman” (I hate that),
warrior (I hate that one too), and on and on. Some of them are basically complimentary, some
are passive aggressive, some are entirely aggressive; like I said earlier, they are all code words
that are intended to label a woman and give others a hint that they are stronger than they
should be according to societal expectations.
Do we introduce men with all of these labels? Not typically. We describe men according to
their titles and achievements; their awards and their accolades. The things they have done, not
their personality traits. When a woman is introduced or described with labels they are more
like warning labels for everyone else – here comes a woman whose behavior may be offensive.
As a public speaker, I am constantly introduced by others, which means before I walk in the
room or open up on Zoom, I have been described. All of the words have been laid down like a
carpet to direct my path toward my audience. When I’m having personal or less formal
conversations, I am introduced or described with other words. I’ve heard everything from
“badass bitch” to “brutal” to “don’t mess with her” to “she scares me.”
Depending on how I’m feeling in the moment, I pump my fist or roll my eyes. I feel a swell of
pride or a spark of irritation. I think of that bumper sticker and console myself with quotes like
this, one of my favorites:
“I’m not intimidating, you’re intimidated. There’s a difference. I’m not mean, nor aggressive, I
am honest and assertive and that makes you uncomfortable. And it’s not ME that makes you
uncomfortable, my PRESENCE challenges your comfort. I will not be less for you to feel better
about yourself.”
Does that sound aggressive? Too bad.
As I said earlier, I was asked here to be a part of the celebration of women this month. I was
asked to talk about myself. I do public speaking all the time, but I never talk about myself to
the extent that I have today. That internal struggle has pervaded my thoughts the entire time
I’ve been writing and preparing for this speech. Am I being too boastful? Am I being too much?
Even right now there’s a voice in the back of my head trying to make me feel ashamed of some
of what I’ve said today.
I don’t care! You probably have figured that out about me by now.
I’ve decided that I want to dedicate this presentation to the poorly behaved little girls, some of
whom might be big girls now, who speak out of turn, who area loud and opinionated, who
don’t like to sit still, who try to control the whole room, who cracks jokes when it’s quiet, who
sings at the top of her lungs while she does her chores, who is sent to the corner of the room
and holds still while she is paddled, only to stomp back to the corner without seeming to feel it.
She is preparing for the fight of her life. She is practicing what she needs when her child is ill,
when communities need to be built, when people who are hurting need a champion. She will
love fiercely. She will bring people together. She doesn’t know it yet, but she will change lives.
She will make history.