I am tense, silent, walking hesitantly with my mother down the shabby hallway-dimly lit and creepy inhaling the oppressively musty odor of poverty. Four heels barely click on the broken flooring covered with washed-out, worn floral linoleum. We pass one door, two doors, then the tiny communal bathroom with its rickety pull-chain flush above the toilet and its sorry light bulb swaying on a cord.
I am ten years old, and I hate coming here.
We are in my grandfather’s beat-up tenement building on New York City’s Lower East Side, several decades before that teeming neighborhood would morph into the trendy locale of the 21st century. At the time of our visit, it is still a place where only poor folks live, mostly aging Jews-Eastern European immigrants who escaped to the land of opportunity in the early 1900s. The pushcarts from which they once earned a paltry living have pretty much disappeared, but the stale smell of need lingers.
Grandpa’s tiny apartment is at the end of the narrow ground-floor corridor, its walls half-covered with tin sheeting dressed in peeling institutional-green paint.
We go in. My grandfather, as usual, is seated at an oil cloth-topped table in the little front room that serves as a kitchen, a living room and a place to bathe, Dishes are draining water into the pitted, dingy sink/bathtub, Grandpa’s wheelchair, with a small American flag draped from a stick attached to the back, stands beside a stubby wooden icebox. His crutches lean against the bathtub-sink.
Immediately, Mother and Grandpa launch into a hot-tempered screaming match, clashing loudly in high decibel Yiddish. These exchanges are one reason I hate here. The fights are always about Grandpa’s drinking beer. He isn’t supposed to. He does. Mother and also Aunt Shirley yell at him.
“Why doesn’t Grandpa have legs?” I’d asked my mother years before.
“Because he ate black bread in Russia,” she dodged, keeping the secret. Such was my introduction to the family’s world of disability, a world where the overarching sentiment about disability-my grandfather’s, my mother’s, my father’s, my aunt’s-was pity. Frustration and rage ran a close second.
Both Grandpa’s legs had been amputated above the knee. His eldest daughter-Mother’s other sister, my Aunt Becky-was left profoundly deaf in childhood after a siege with rheumatic fever. My mother herself had a hearing loss, caused by a perforated eardrum sustained in her mid-30s; through her life her hearing progressively worsened. My father had a rare, life threatening chronic disease triggered by food allergies.
When I was growing up, the word disability wasn’t in vogue; it wasn’t even used. People with disabilities, like my grandfather, were called crippled. Similarly, Aunt Becky was branded a deaf mute, a label inevitably followed by the solemn, “Isn’t it a pity on her?”
The principal feelings my parents had about their own physical challenges were resentment and anxious anger. Mother, mainly because a) she thought losing her hearing at a young age was unjust, and b) she was ashamed to ask people to repeat what they had said (vanity dictated that a hearing aid wasn’t a possibility). Dad got upset, and therefore sicker, during allergy attacks when my mom would tear into him for eating some food he darn well knew would make him ill.
Nothing, however, stopped my parents from leading productive middle-class working lives. As for Aunt Becky, she and her husband, who was also deaf reared three children, knitted the most exquisite sweaters and suits, and enjoyed through lip-reading the jokes with which Mother regaled her. Grandpa mellowed out now and then when I came by and played Mr. Potato Head with me (the game was brand-new and hot).
But in my family, nothing associated with disability was the least bit hopeful or upbeat. That’s a major reason why, years later as a Los Angeles-based entertainment journalist, I was attracted to ABILITY Magazine. Discovering the very first issue, I instantly loved its mission of showing that people with disabilities are regular Joes and Josies like the rest of us-they not only cope, but also conquer and achieve.
As Managing Editor since 1993, I’ve had the pleasure to interview and write profile articles about some of the most admired celebrities on the planet: Ray Charles, Richard Pryor, Elizabeth Taylor, Annette Funicello, Steve Allen (the comedy legend with whom I earlier co-wrote three books), Naomi Judd, Suzanne Somers, Alan King, Chris Burke, Geri Jewell and many others.
My long association with ABILITY also served as a pivotal motivation for me last year to found a new enterprise, Family Star Productions. Similar to writing celebrity profiles, I’m now capturing the lives of the starring members of everyday families. With Legacy Profiles, I’m helping not-necessarily famous people preserve their precious, one-of-a-kind family histories for generations to come.
In a private interview or two with the honored family star-at home or by phone-I draw out cherished memories and stories, along with important values, philosophies and challenges overcome that have brought about that individual’s outstanding achievements.
The result is a first-person life story that isn’t merely a collection of historical facts, but conveys the subject’s heart and soul, passing along the knowledge that fostered personal growth and imparting advice to younger generations. It’s the book about your life that you always wanted to write-but haven’t.
Such detailed, treasured portraits can be especially valuable to people with disabilities and their families. Told in the person’s own words, these intimate accounts communicate the total, three-dimensional individual, demystifying the disability and accurately memorializing how it has and hasn’t-impacted the person’s life.
I wish I had Legacy Profiles of my grandfather, my Aunt Becky, my parents-and their ancestors, too. Everyone’s gone now, so there’s no way to answer the questions I have and portray in text or on video who they truly were.
It’s sad-and unfair-to remember my grandfather only as a stubborn, combative man who lost his legs. Not long ago, I learned that his amputations resulted from complications of kidney disease. But using crutches and a wheelchair certainly wasn’t Grandpa’s whole story. I wish I knew much more about the chocolate factory he owned, for example, and the funny little swirls he placed atop each candy, which he once told my mother served as codes for the goodies nestling in the center.
I wish, too, that I’d learned more about my father’s life when he was growing up at the turn of the 20th century. One of the few stories he told me was that he went to poor kids’ summer camp with comedian Eddie If-You Knew-Susie Cantor!
At the moment, some cousins and I, spread around the world, are busy emailing one another, trying to piece together our relatives’ lives based on scattered memories, faded letters and uncaptioned photos. It’s mostly the why’s that we’re after-but those, of course, are hardest to pin down once the family stars are no longer around to ask.
In the past few years, with the aid of computer technology, greater numbers of people have been mapping out their family trees and trying to discover more about their ancestors. Most of this effort stems from curiosity, family pride and a yen to connect, augmented sometimes by a desire to locate birth parents and siblings or to trace genetic traits or illnesses. But more often than not, comprehensive information is difficult to unearth.
To be sure, the best way to preserve family history is by talking to relatives while they are still here so you can capture each of their stories-happy ones, poignant ones, astounding ones-in writing or on video.
As I devote more of my time now to Legacy Profiles and Family Star Productions, others at ABILITY Magazine have taken on many of the duties in producing one of the nation’s premiere publications about health, wellness and human potential. But I will continue as a senior editor, bringing readers articles that enlighten and entertain.
At ABILITY, we profile many movie stars and other celebrities-but you don’t have to be a celebrity to live a fascinating life. Each of us has a unique journey. And it’s enjoyable-even exciting-to recall that amazing trip in a personal interview. To be sure, the Legacy Pro file process makes you feel good about the life you’ve led and your accomplishments.
At Family Star, we do it all: the interview (one or more). writing, editing, printing, binding-and for video life stories, total production. For illustrated print Legacy Profiles, we help you select photos and mementos, then mount them and embellish the pages. Finally, we put everything together in a leather album or bound book with the family star’s photo and name written in gold on the cover. Video versions come on custom-printed discs with matching covers and boxes.
Who knows about you better than you? Your history is your family’s heritage. Your Legacy Profile will be your family’s joy.
by Jane Wollman Rusoff