Arc Update

Shirley Perez, Executive Director of the Family Support Network and I met with the
new Executive Director of The Institute, Kathy Carmody, yesterday.

Today Shirley and I will be in Chicago testifying at the House Appropriations Human
Services Committee on the Dept. of Human Services which we both oppose.

Interesting opinion piece from the Chicago Tribune from a sib.

Tony

By Kellie C. Murphy

I couldn’t stand the stares. I could ignore everything else, but not the stares. We
went to the zoo and the Jersey shore, we flew to Atlanta for a family reunion — me
with Gran, her with my parents, a normal family. And I couldn’t take people gawking
at her.

My sister Sloane was born June 18, 1977, the hottest day of the year. I was 6
years old. My parents rousted me that morning, told me I was going to Gran’s house,
and less than an hour later, Sloane, a healthy baby girl, greeted the world. I proudly
carried her around like a doll.

Sloane drew glances from the beginning. We lived in an apartment in an all-white
neighborhood, and she was much more light-skinned than my parents and I, with red
hair. We were used to unwanted attention in our neighborhood — my Big Wheel was
stolen, my dad’s nice sports car got scratched up, people would yell racial slurs at us
from their car windows. My parents feared I’d experience racism at the all-white local
school, so they used Gran’s address to send me to the school they had attended and
where their friends’ children attended.

But once Sloane was hurt — that’s what we always called it, “hurt” — people stared
for other reasons at this very small girl in the wheelchair.

It was December, I think, 1977, and Mama was late picking me up from school. The
look on my parents’ faces when they finally came through the door was one I hadn’t
seen before and haven’t seen since.

They told me my little sister was in the hospital. That she’d been hurt.

A family’s journey

My dad had found her on the floor of our living room, where he had left her playing
on the couch, and she was unresponsive. Nobody knew anything about shaken baby
syndrome back then, so he shook her. Hard. My dad is 6 foot 5 and weighs more than
200 pounds, so this shake may have done the irreparable damage all on its own, a
thought my dad will probably never get over. (The social services inspector who later
came to the house to question my parents actually asked if my dad — because of
Sloane’s light skin — was “really” her father. The inspector was promptly thrown out of
our home.)

Sloane was in a coma for three weeks after flat-lining in the helicopter that flew her
to Children’s Hospital in Philadelphia. Surgeries followed. A shunt was placed in her
brain to drain any remaining fluid. Diagnosed with cerebral palsy, Sloane would
probably not see her first birthday, my parents were told. I was told nothing. I didn’t
see my sister for the next year and a half.

When Sloane came home from the facility she’d been recovering in, she was
chubby, healthy and still a redhead. I would trace the scar on her scalp with my index
finger and ask her if it hurt.

Sloane was the same as she was before, except for one trait. She’d been very
bubbly and excitable before, but now, she had what I can only affectionately refer to
as a “mean streak.” And who could blame her? When she got mad she’d hiss like a big
cat, which meant Leave me alone. Most of the time though, she was incredibly pleasant
and easygoing.

Mama enrolled Sloane in school, one for kids like her called the Mercer Day Training
Center. Some of the counselors there nicknamed my sister “Sloane-berger,”
presumably after the character Grossberger from the Richard Pryor/ Gene Wilder movie
“Stir Crazy,” a nod to that aforementioned mean streak.

All about Sloane

Sloane never walked. She vocalized but didn’t speak words. She had some motor
skills and could lift her head toward light or a voice, but she depended on us to feed her,
dress her and take her places. But I never heard my parents complain about caring for
my sister. Mama could break down the wheelchair in seconds. She put that high-tech
chair with all its parts together in driving rain, in below-zero weather, in searing heat —
while folks watched. Everywhere we went, we were met with faces filled with pity and
sheepish smiles. The looks and stares, although full of empathy, were always from
strangers who didn’t understand us.

My dad was especially sensitive to the staring. One time, my dad took Sloane to
McDonald’s. He hoisted her up in his arms, and they went in to get cheeseburgers.
Just a father and his daughter at McDonald’s, but it drew looks all around. He’s the
family introvert, not wanting anyone to know his business, and when you have a child
like Sloane, well, let’s just say it really helps to not mind being in the public eye. Sloane
would kick her feet excitedly and respond to voices. She snored like a monster truck.
She wasn’t shy.

Feeding Sloane was interesting too. She couldn’t eat from plastic forks and spoons,
so we took our own lunches, snacks and utensils everywhere. Sloane couldn’t just take
a bite, so we’d create bites for her by mushing up her food. And people stared.

Sloane rules

Sometimes the attention wasn’t so bad. We went to the Philadelphia Zoo nearly every
year for Sloane’s birthday. If we parked her wheelchair for a few minutes to eat or to give
her an Icee, she’d hold court. Sloane was just popular. Within minutes, kids surrounded
her, asking questions. Adults rarely asked anything, except when they had a similar child
at home. Perhaps they looked to identify with us. Kids were easier. On her last visit to the
zoo, two little girls asked how old Sloane was. Another little boy asked simply, “How
come?” His dad stepped in with the best possible answer: “Well, something must have
happened when she was born, or she could’ve had an accident. She’s just like you
though.” I almost cried.

We never pitied Sloane, and we never pitied ourselves. Perhaps that’s why — along
with many more surgeries — Sloane thrived like she did in childhood, despite being
given a life expectancy of only a few months.

Mama was tough, like a machine. No emotion, all business. Sloane and I weren’t like
that. We got all daddy’s emotional range but none of the introversion. Sloane cried when
she was in pain. She sang when she was bored. She hissed when she wanted to be left
alone.

I remember when she “graduated” high school. Mercer Day Training Center had a
graduation ceremony just like any other school. My dad cried, and I screamed her name
at the top of my lungs like a lunatic. But what I remember most from that day was walking
into her classroom. There were maybe 10 kids there, of varying degrees of physical and
mental capacity, and most were buzzing around the room in caps and gowns. Sloane was
on one side of the room, and Stacey, another girl in a wheelchair and Sloane’s friend from
early childhood, was on the other. Stacey would sing something, then Sloane would
answer her right on cue. They were talking to each other.

My parents eventually divorced and I went off to college, but Sloane, living alone at
home with Mama, thrived. Mama’s last job before retirement was at a large health care
foundation in Princeton, one with excellent health benefits and a very family-friendly policy
that allowed her to leave to tend Sloane when needed. Everything always worked out. But
there were always those pitying glances, and occasional questions, like, “How do y’all do
all this?”

To which I always thought, “Do all what? Take care of my sister?”

Stormy times

There’s a long history of doctors encouraging families to institutionalize their disabled
children. We knew Sloane would slide down fast in an environment like that. She was ours,
and we’d take care of her. It wasn’t a question of how we’d do it. We just did.

I’d pick her up some weekends and bring her to my house for a girls’ break. We’d play
music loud and watch silly Eddie Murphy movies, her favorites, and she’d laugh at all the
right parts. We’d sing songs, and she could hit all the same notes I could, even if she
wasn’t singing words. I’d put her in my Jacuzzi and I’d wash her hair for her, because
Mama’s knees had become so creaky that she couldn’t lift her from the tub anymore.

In March 2010, Sloane was hospitalized for an entire month. She hadn’t been sick that
long since she’d been hurt. The doctors couldn’t figure out exactly what was wrong, but
she seemed to improve, so we took her home again. During this time, I was also sick.
I’d begun having debilitating panic attacks since the year before, after losing my job. The
first one came on a train platform in Philadelphia; if my boyfriend hadn’t caught me in his
arms, I would’ve hit the pavement face first.

My world became very small. As folks with panic disorder will tell you, it quickly goes
from being about the panic attacks themselves to being about round-the-clock
maintenance to prevent a panic attack from even starting. I rarely left the house, didn’t
sleep much and dropped weight fast. Being 5 foot 10 and 112 pounds attracts some
attention; now I was the one getting pitiful stares. At a funeral, one of my aunts asked m
y dad if I had an “eating problem.” I got stares when out at restaurants, and within
minutes, I’d be crouched in the ladies room, sweating profusely and panting, trying to
stave off a panic attack without throwing up or passing out. I didn’t have an answer for the
attacks. I couldn’t explain where they came from.

That summer, a low dose of antidepressants with anti-anxiety properties and the care of
a wonderful doctor changed my life. I taught myself how to think again. I learned to be
more spontaneous and emotional, like my dad, instead of calculating and always tough,
like my mom. My last panic attack was Thanksgiving weekend 2010.

Good times and bad

One month later, on New Year’s Eve, Sloane died. She was 33 years old.
We never had her autopsied, so there was no cause of death, but I truly believe
— deep down in my bones — that Sloane would’ve passed away back in March, but she
wouldn’t leave this Earth, she would not leave me, until I was well again. That’s what we
do in my family. We see after each other. No pity. No excuses.

I’ve been free of meds since 2011, and I’m still learning how to live again and manage
my anxiety. Losing my sister was more difficult than taking care of her ever was. She
taught me everything I know about strength: that you can still be strong even when you
need help. Even though she completely depended on the people around her to care for
her, Sloane’s strength was in the ability and willingness to keep going, and she did it for
33 years — despite having the sad eyes of the world on her.

Washington Post

Kellie C. Murphy is a journalist from New Jersey.

Tony Paulauski
Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423
815-464-1832 (OFFICE)
815-464-1832 (CELL)
Tony@thearcofil.org