LIFE JOURNEYS – A Tapestry of Life by Robbi Nester

 

Ying YangI have sometimes heard a person’s life described as a tapestry. If this were truly accurate, that life would be of a piece, an intricately embroidered fabric whose threads all formed a single image or pattern. But life is far less neat and predictable than this. There are many loose ends and false starts. Most lives would most certainly not resolve into a neat single pattern. This is the case of my father, Mish Kellman, a complicated man who, while he was gentle and kind, full of life and compassion, was at other times violent and contradictory, morbid and preoccupied with death.

Part of this changeability may be chalked up to his neurology. My father was bipolar, and had Tourette Syndrome and Obsessive Compulsive Disorder (OCD). Lifetime movies aside, mental illness is truly not romantic or interesting. It is boring and tedious, difficult to deal with, and wreaks havoc not only on the life of the person with the illness, but on his whole family. This was certainly the case of my father.

He was born in 1916; a week or so after his 40 year old father died of a heart attack in the middle of the street while at work in the family’s trucking business.  I know little of his father’s family except that they were comparatively wealthy and disowned my grandmother and her children. What I know for sure about my father begins with what he was able to remember himself.

After this he told me my grandmother took in sewing, but it wasn’t enough to bring in food for the children. My father, small and slight, tried to help by squeezing under the pushcarts parked along the street to steal fruits and vegetables for the family’s dinner. He and the other urchins of that hungry time would gather coal from the passing trains to heat the house.

As a schoolboy, in an unforgiving Philadelphia school system, he was punished for his inability to remain still and the terrible shooting pains behind his knees. He told me when his legs would press against the hard wood of the chair he would cry out. His teachers interpreted this as deliberate bad behavior so he was finally expelled as incorrigible.

At that time Tourette’s and multiple other neurological disorders were frequently misunderstood. He ended up in a hospital because of his tics, which were mistaken for some sort of communicative disease. No one came to visit him for two months in the hospital. In my lifetime, his difficulties continued, though his Tourette tics and twitches had virtually disappeared.

Prone to attacks of rage that made him difficult to be around, my father nonetheless managed to be funny, imaginative, kind and generous much of the time. Though not formally educated he was intellectually curious, and fiercely concerned about justice. Most of the time, he loved life above all things.

I remember one incident from my childhood that illustrates this. The children of my neighborhood loved my father, but were also afraid of him. One never really knew who would answer the door—the bipolar monster who would lash out violently for no reason, or the kind, funny man who played like a child. One day, my dad, an electrician, told me to assemble the children on the block for a treat. A long line of impatient kids stretched out the door and down the cellar stairs to watch my dad electrocuting hotdogs. He had rigged up a device, attached to the light fixture, impaling hotdogs on sterilized nails. They would hiss explosively, then burst open in a sizzling spurt. We used up three packs of hotdogs that day, and as many buns.

As a young adult, my father left home early and joined the Air Force, where he learned to pilot planes. Because of his volatile temper, he never formally became a pilot, but he was a flight mechanic, and ended up as part of a crew that flew 35 or more missions over Germany in WWII.        

After the war, he went to Israel, smuggling guns into the country, along with his brothers, and helped to found one of the first kibbutzim, a communal farm devoted to a strictly socialist ethic. There he met my mother, who had come from South Africa with her sisters, and married her in a ceremony that joined a number of couples at once.

Despite his devotion to the idea of the nascent state of Israel, he was dubious about the kibbutz system, which relegated him to picking bananas, while the schoolteacher attempted to take care of the electrical system. Everything had to be strictly equal; it would have been viewed as elitism to allow the electrician to care for the electrical system, the teacher to run the schools. His choice words on the subject got him expelled from the kibbutz, as he had been from so many other institutions. It was just as well: he had tried to learn Hebrew, but was never able to, despite his efforts.

He returned home to Philadelphia with my mother where he worked for 35 years before retiring and caring for my mother who had dementia.    

Because of his bluntness and uncontrollable temper, much of his life was very difficult and unhappy. Sometimes he lost jobs because he would speak out or act inappropriately. He was violent and often depressed and morbid, a difficult husband and father despite his love for us. But every Friday, he put a silver dollar in a piggybank for me. This later funded my college tuition because some of those dollars were worth thousands each. He would bring me a different book every Friday evening. This was his way of celebrating the Sabbath. During the good times, he would wake me at 5am to take the dog for a walk. He would point out the colors of the morning sky; nourish in me an appetite for stories and teaching me to be kind and compassionate.

At 89, the second phase of his life began when he had a stroke. Things had deteriorated in the house in Philadelphia. Despite my pleas, he had allowed my mother’s hoarding and dementia to overwhelm them both. I could not get him to have the house cleaned out and sold. He was convinced he could not afford to come to California to start a new life. He had thousands of dollars buried in the house, amid bags of trash, and had invested wisely in stocks over the years. I did not learn of this until I took up the reins of his finances.

After the stroke, when I was able to assume control of my parents’ affairs, I had my father assessed by a psychiatrist, who was able to come up with a cocktail that made life livable for the first time. I sold the house before the market crashed, and made use of the money my father had saved to make them a better life, the kind he had always dreamed of, in California.

According to dad, these last five years of my father’s life were the happiest he had spent in his entire life. For the first time, he was put on medication for his disorders. He became a completely changed person, a much happier one, and much easier to be around. He blossomed. With the care of doctors and the caretakers who tended to him, he became the kind person he always was, deep down. He was able to nurture a love for gardening, Sudoku puzzles, good food, and most of all, conversation. He was a completely changed person, a much happier one, and much easier to be around. Dad would call me every day and say, “It’s a beautiful day,” even if it was pouring, because he was just so happy to be alive. I will miss him and feel privileged to have been his daughter.

 


Out of the Shadows, Onto the Stage by Caryn Sullivan

As a person who experienced paralysis first hand and was bound to a wheelchair, I became very intrigued by the television show “Push Girls” that premiered this year on the Sundance channel. The program revolves around four (sometimes five) young attractive women in different stages of their life that rely on their fancy wheelchairs to conduct as close to normal a life as they can. It is truly an inspirational program and one I can relate to. The Push Girls are on television, but what about those with disabilities that live among us. That is why I chose this article written by my friend, Caryn Sullivan, in her July 20, 2012 St. Paul Pioneer Press column to be featured this month.

Caryn writes…
When a child is born, she is swaddled and placed into loving arms. New life inspires dreams of years filled with opportunities and purpose. But when cognitive or physical limitations appear, a limiting label rattles the dreams and posits questions to which answers may be elusive.

Can a person with developmental disabilities live a purpose-filled life? What is in store for one who cannot speak clearly, if at all, or whose ability to reason or read is far below the norm?

In generations past, adults with disabilities had few options. Often living out of sight, little was expected and little was offered.

The world is changing for them.

As they come out of the shadows, there’s a growing movement to focus on abilities of people who are too often thought of in terms of what they cannot do.
At Partnership Resources, Inc. (PRI), adults are changing the paradigm and using the stage to do so. Diagnosed as developmentally disabled, they offer a humbling and insightful lesson about who they are, what they dream about and what they can accomplish.

PRI, a Minneapolis-based day treatment program, has been around for decades. Like many other such agencies, it provides a range of services for its hundreds of adult clients. It works with dozens of local organizations that employ those who are able to work.

PRI also instructs clients about cooking and wellness and offers yoga and music therapy. Its visual arts program, PARTnerships, provides clients an opportunity to develop their artistic abilities as well as to sell their artwork.

But PRI’s theater program has been in the spotlight lately.

Five years ago, a PRI client said she dreamed about appearing on stage. Some of her contemporaries shared her dream. So PRI instituted a theater program in conjunction with MacPhail Center for Music. An acting class evolved into full-scale stage productions of “Grease,” “High School Musical,” “The Wizard of Oz,” and “Willy Wonka.”

“Hairspray” was the 2011 production. Before work commenced, a fan and benefactor committed to funding a short documentary to chronicle the process of producing the show, beginning with casting and ending with staging. It includes interviews in which actors share what it means to be able to perform. It also includes snippets of them strutting their stuff.

In “Born for the Stage,” documentary director Matt Ehlig revealed how teamwork and ingenuity merged so actors with speech and vision challenges could be cast in meaningful roles in a musical alongside a colleague who uses a wheelchair. Cue cards were created for one actor, verbal prompts provided for another. Ehlig reported how, initially using CDs and scripts, staff and volunteers coached actors over the course of several months.

As they honed their skills, the group’s performances attracted more than friends and family. They’ve garnered media attention. “Born for the Stage” made its way onto YouTube.

It also received awards at the Lifetree Film Festival in Colorado and the Manhattan Film Festival. The latter selected “Born for the Stage” for the “Film Heals Award,” which honors filmmakers who use film to promote peace, justice, equality and humanity.

The documentary also received accolades from the professionals who brought the show to the stage and the big screen.

A random Google search of “Hairspray” led Marc Shaiman, co-creator of the Broadway show, to the documentary on YouTube. Shaiman, a Tony award-winner, contacted PRI to express his enthusiasm for a job well done. He said, “This film left me speechless and that’s hard to do.”

John Waters, producer and director of the original film, also saw the documentary. Last year, he met with PRI performers at the Walker Art Center in Minneapolis and said, “I’ve seen “Hairspray” done hundreds of times, but no group has captured its meaning like you have.”

So what can come of their efforts?

Allison, who worked part time at Target while performing a lead role in “Hairspray,” said, “I’m hoping that my family will learn that just because I have a disability doesn’t mean that I can’t do something. I believe in myself. I keep pushing myself.”

Zach has found his purpose in life. He plans to spread his joy by singing, dancing, acting and directing. After all, he asked, “How many people get to make a thousand people happy?”


Disability Etiquette

It can sometimes be confusing to know how to react and what to say to a person with a disability. Sue Warner, Communications Specialist for  Courage Center, gives us an insider’s perspective on disability etiquette. This is also good advice for those interacting with older adults who may be realizing diminished physical abilities.

 

Labels are for food and clothes, not people

Some of us are funny and have a positive outlook on life; some of us are gloomy; some of us are real jerks. Most of us are a little of each, even if we have a disability. Leave the labels alone – hero, selfless, courageous, brave, saint – spare me! Each of us is unique. An individual. Treat me as you would treat anyone else you meet for the first time and form your opinions based on your experiences rather than labels. Focus on me, not my disability.

Yes, I know, person-first language can be unwieldy. Here’s a tip: Put the focus on the person and their strengths and abilities. Use your creativity. Call me a “woman on wheels” or mention that I “use a wheelchair to get around.” But, if you must reference my disability, please use person-first language. For example, “actress with a disability,” “athlete with a disability,” “coworker with a disability,” rather than “disabled actress” or “disabled skier” or “disabled accountant.”

 

Talk to me

Talk directly to me, not to the person with me. If I use a communication device, make eye contact with me; don’t look at my communication device. If I’m in a wheelchair, try to put yourself at my eye level; sit in a chair or kneel down if you are able. If I have a speech disorder, I may be hard to understand. It’s fine to ask me to repeat myself until you understand.

Really. It’s also OK to ask another person who is used to my speech pattern for help. If I’m deaf and no interpreter is present, talk to me using a normal tone and rhythm of speech – and be sure to look at me while speaking so I can see your lips. If you speak rapidly you may need to slow down a bit. You might also want to use a notepad and pencil.

Ask respectful questions, but only when the time is right.  Most of us are comfortable answering a few, respectful questions about our disability, especially when these questions come from children. However, please be aware of what’s going on around us. Sometimes, even respectful questions just aren’t appropriate. Also, realize that everyone deserves privacy; many of us have had a lifetime of answering questions. Even tactful, friendly questions, when asked at a bad time, can spur an irritated answer. Kids do say the ‘darndest things,’ but in a room full of people I don’t know well, I really don’t want your darling dearest asking me, “How do you go potty”?

 

Small talk

Like most people regardless of disability, I have many interests. My disability is really old news to me. If I had a dime for every person who’s asked me “How often do you charge that thing?” in reference to my power wheelchair, I’d be a wealthy woman. Small talk about the weather or the Minnesota Twins is just fine. Really.

Can you help? Be considerate and patient with the extra time I might need to do something and respect my right to let you know what kind of help I need. Use good judgment on whether or not to ask if I need your assistance. And if I decline your help, please don’t help. If I’m blind, please do not grab my arm and try to guide me. Ask me if I need help and wait for my answer. If I say, “no, thank you,” let me navigate on my own. If I do accept help, please extend a bent elbow and allow me to grab your arm. Of course, common sense says if you see me walking in the path of an on-coming truck or headed for an open sewer, telling me to stop or even pulling me out of harm’s way would be a good thing!

So you love dogs! A service or guide dog is usually attached to a human. So, please talk to me, not my dog. Be respectful and kind to service animals. They have a job to do. If a service dog is in harness, please don’t distract it. And, please do not try to sneak in a ‘pat’ or two, figuring I’m blind and won’t see what you’re up to. I know you love dogs, and they are cute and lovable, but please don’t touch!

 

Respect my space

My wheelchair is part of my personal space. Never push or hang onto my wheelchair without asking if you may do so. (My husband has permission, you don’t.) Power wheelchairs especially can hurt or seriously injure me – and you – if you touch something like a joystick (controls) without realizing what you’re doing.

Words and terms to use and to avoid. Don’t be concerned if you catch yourself using words like “see” to a person who is blind, “hear” to a person who is deaf or “walk” to a person who uses a wheelchair. These words are everyday terms and really won’t offend. Heck, we use them all the time ourselves. Don’t use words or terms like: I am just as “normal” as you are; a better word choice is “people of all abilities.” I have arthritis, I am not arthritic. It’s better to say “he has arthritis” or “she has cerebral palsy.” Do not say birth defect. It’s better to say, a person who “has had a disability since birth” or that she has a “congenital disability.”

 

Relax!

Susan’s best advice. Relax! If you don’t know or haven’t had much experience interacting with people with disabilities, remember that we are people just like you. When in doubt, ask. Use good common sense and keep these tips in mind in your interactions with people with disabilities and you’ll do just fine. Really!