Putting a Face on Disability
A Special Soul
How my special needs sibling changed our family and our community.
by Lauren Roth
This is the image I always have of me and Rachel: I see us in the pool at the Memphis Jewish
Community Center, laughing and frolicking in the sun. I’m seven and she’s three. The water
buoys her up so she’s almost weightless, and that makes it almost as though she’s a regular
sister. I can carry her around and it’s not hard at all, and we laugh and we play.
We loved being in that pool. It was our favorite place.
Even last month, 35 years later, when I went to
the hospital and she was scared and having trouble breathing, I whispered in her ear to help
calm her down, “Rachie, you wanna go swim in the JCC pool? Let’s go swim in the JCC pool!
Remember us swimming in the JCC pool?”
That “playing in the sun in that happy JCC pool with Rachel” memory serves as an apt
metaphor for the entire Memphis Jewish Community: they were our family’s buoy as we
took care of Rachel. It was so easy to carry her around with the love and support and giving
they all had for Rachel and for our family.
A Spiritual Soul
Rachel loved shul, and she brought us all there. She would cry all day Saturday – and I say
Saturday because before Rachel we didn’t know that Saturday was Shabbos – she would cry
all day Saturday until we got into the car and drove to shul…. And then eventually we
stopped driving there and walked there – but we only went because Rachel would have a fit
if we didn’t. And because she would hold up her hand every day of the week and make us
count the number of days until Shabbos. So there was no way we weren’t going to shul,
every single week.
We only went to shul because Rachel would have a fit if we didn’t.
She was a special soul, sent down here to change us.
There was so much I learned from my special sister Rachel.
Rachel couldn’t walk, couldn’t talk, couldn’t see. If she had to go to the bathroom, someone
had to walk her there, pull down her pants for her, settle her on the toilet, wait until she was
done…you get the picture. If Rachel were hungry, someone would have to prepare food for
her, walk her over to the table, sit her down, put her fork in her hand, cut up her food, wipe
her mouth, stay with her to make sure she didn’t choke…. When it was time for Rachel to go
to sleep, she had to be walked up the steps, her pajamas had to be put on her, her teeth had
to be brushed, she had to be put into her bed…. (Oh, how she loved it when we played and
laughed with her before she went to sleep! What wonderful fun we had at bedtime!)
Rachel taught me what it means to give, even when you think you can’t give what’s asked
for. I remember being a teenager (you know how teenagers love to sleep late), and when it
was my turn to take care of her in the morning, Rachel would call (“AAAAAAAaaaaaaaa”)
for me at 6 a.m. to take her to the bathroom. If I slept through her call, I would have to clean
her up and clean up her bed, and she would have to be uncomfortable. So you bet I woke up
at 6 a.m. Even though I was a teenager. Because Rachel taught us what it means to give, even
when you think you can’t give what is being asked.
Do the Right Thing
Rachel taught me: do the right thing, no matter what other people think. I was eight years old
at shul and someone said to me, “Your sister’s so weird. She looks so weird.” And at just
eight years old, it didn’t bother me at all. I just shrugged my shoulders and said, “Hashem
made her that way.” Who cares what other people think, so long as it’s the right thing. Rachel
taught me that.
People would give nasty looks to my mother, as if to say, “You’re
torturing this poor handicapped child!” But she didn’t care.
Her physical therapists wanted Rachel to walk on her walker, even though she didn’t like to.
To motivate her to walk, my mother would park outside the pool (which Rachel loved), put
her on her walker, and say, “Okay, Rachel, you want to swim? Walk to the pool.” And my
mother would bring a book (because she knew it would take over an hour) and stand there
reading it, every so often saying, “Come on, Rachel. Walk to the pool.” And Rachel would
stand there on her walker, this beautiful little handicapped girl, crying and crying, and my
mother would stand there, reading her book, every so often saying, “Come on, Rachel. You
can do it. If you walk there, you can swim.”
Rachel smiling at Camp HASC
People would pass by and give horrible, nasty looks to my mother, as if to say, “You
disgusting mother! Torturing this poor handicapped child!” But my mother didn’t care,
because she knew she was doing the right thing. She knew it was good for Rachel to walk, so
she didn’t care what anyone else thought. Do the right thing, no matter what anyone else
thinks. That’s what I learned from Rachel.
Empathy
She taught me to notice other people’s pain and other people’s feelings. We would have to
work very hard to figure out what Rachel wanted. She would sign “When?” That was her
favorite sign. She used it all the time.
And then we would have to figure out: “When what?” “When are we going to eat?” Uhhh…..
“What are we doing next?” Uhhh…. “When is – oh, I don’t know – when is Rabbi Grossman
going to come here for dinner and bring chocolate mints for dessert and wear a pink tie??”
We had to try and intuit what she could possibly want, with nothing to go on except for a
cute little “When?” sign, and our knowledge of what she might like at that particular
moment. That makes you into a really tuned-in person.
Loving Kindness
Seeing my parents and my sister and me taking care of Rachel touched people’s hearts.
Everyone loved Rachel. The pretty little girl in the wheelchair who loved when the shul sang
“Adon Olam.” Who laughed with delight when you wished her a “Good Shabbos.” Who
loved the people around her as much as they loved her.
My parents gave Rachel vanilla cake at kiddush at shul to keep her pretty dresses clean
(Rachel was a beautiful big mess when she ate.) Rachel would laugh and laugh when
Suzanne, every week, whispered to her: “I’m gonna find you some CHOCOLATE cake and
slip it to you!” And then did!
Uncle Phillip, big quarterback Uncle Phillip (who isn’t really our uncle, just a very close
family friend) with his booming southern baritone voice, would wish her “GOOD
SHAAAABOS, RACHEL!” And Rachel would look pleased as a pickle and say
“AAAAAAAAaaaaaaa!”
These are beautiful, beautiful, iconic moments of loving kindness – chesed – in Rachel’s life.
She LOVED that. Because all she wanted was loving attention. That’s it! Just give her chesed,
just do kindness, and you made her happy. So we all learned how to do chesed – how to
practice loving kindness. And we all did that much more chesed because of her.
Without Rachel, there is no way I would be as aware as I am of how grateful I am for my
capabilities. I mean, it’s a BIG DEAL that I can see beautiful trees and the beautiful sky. I
only appreciate it because Rachel couldn’t see them. It’s a BIG DEAL that I can stand myself
up and walk myself to the bathroom and use the facilities all by myself. Rachel never could.
It’s a BIG DEAL that I can eat real food, and chew and swallow and taste – because for the
last year Rachel couldn’t. And I can pick up a Cheerio, and I can hold a pencil, and I can
write, and I can read, and I can speak. WOW!
I must thank my parents for this part, especially. For framing Rachel’s life in that light. For
framing Rachel as “She is here as a gift to us, to make us better in so many ways.” That is the
rubric and the foundation for it all; their attitude was “Rachel is here in our family, on this
Earth, as a gift to us, to make us better in SO many ways.” As my mother said, “We can’t
choose what we are given. But we can choose how we deal with it.”
So I can pick up a Cheerio, and I can hold a pencil, and I can write, and I can read, and I can
speak. WOW!
One year on my father’s birthday, Rachel cried all day. She cried and she cried and she
would not stop. Finally, finally, my mother figured it out: Rachel had wanted to make him a
card. And that’s why she had been crying all day.
What a blessing that I can speak! What a blessing that I can communicate! And tell my loved
ones what I want, what I need, how much I love them.
Of course, Rachel’s not being able to do all those things made us into chesedmachines. That
was what her soul was sent here to do.
The two songs that she loved perfectly encapsulate her life and her purpose here.
One was Adon Olam, which is all about God’s sovereignty in the world – Rachel was so
spiritual, and she made us all more spiritual. Her realm was not the physical realm; she was
like a fish on land here.
The real Rachel was trapped in her body, and now – she’s free.
The other was Oseh Shalom: a verse all about making peace in the world. What Rachel made
us do waschesed (acts of loving kindness), which creates peace. Through taking care of her
we learned how to be sensitive to the needs of others; we learned how to do even more
chesed, creating even more peace in the world.
Rachel’s essence was expressed through those two songs.
Running in Heaven
Two weeks before Rachel passed away at
age 39
The real Rachel was trapped in her body, and now – she’s free. Rachel passed away
peacefully, surrounded by her loving sisters and parents.
Now, it’s like she’s in that JCC pool again – weightless, not pulled down by her physical
body – only even more so now. Now she can run, she can fly, she can sing, she can talk! She
can communicate to her heart’s content.
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I always thought she could talk with God. I feel like she’s now back where she fully belongs
– in the spiritual realm. I kept telling her in the hospital, “Hashem is going to take good care
of you, Rachel, because you are so good and you did so much good.”
She made us all so much better than we would have been without her. She made us all so
much more spiritual. And even though we loved her and she loved us and we were her
home, she was never really here fully because she could never really tell us what was going
on inside her. That was always her secret between her and Hashem and the upper realms. So
now I feel like she’s really home.
I love you, Rachie Baby.
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