Ode to Forgotten Veterans

He folded the box so carefully, and taped it perfectly.

It was 3 o’clock in the morning on night shift in a factory in rural Minnesota. Louis and I work at the same table together. We clocked out together, so I could visit with him when he took smoke breaks. Sometimes we said nothing. Sometimes he just puffed in pensive gaze at the starry night. Occasionally, he would open up about his life — the painful and the beautiful. As a young man, with more stars in his eyes than the sky he lost himself in, he was drafted into war.

So he went.

He saw things he never should have seen.

And had to do things he never should have had to do.

He returned home heartbroken. Unrecognizable to himself.

Tears rolled down his weathered, wrinkled cheeks that had once been rosy with youth, as he let me see into his fractured soul.

Years of hitting the bottle to drown his nightmares landed him homeless and on the streets.

He had to beg for food and curl up in fetal position to endure the harsh outdoor elements in every unforgivable season.

Least forgiving of all was how his brothers and sisters back at home regarded him, a hero.

Instead of warmth and love, he was abandoned in his vulnerability.

Now in his 70’s, he was getting his life back — what was left of it.

With his flannel shirt sleeves rolled up to reveal many faded green tattoos, he toiled into the night — both daily and of his life.

Louis, Sir, I bow in reverence to you, my beloved brother and friend. And most of all, with all my heart, I am sorry and thank you.

Invisibility Cloaks: Social Contracts We Make with Caregivers

Hush!

Let’s not move for a minute.

It will take only a minute.

There you go.

You can’t feel it, but now you’re wearing an invisibility cloak.

You are now completely invisible.

Even your humanity is totally hidden, which is what we want.

And you won’t remember that you signed a contract with other human beings.

You are subservient to them, but will be called “family.”

That’s an emotional trap to keep you here. But it’s a one-way relationship.

Now let me tell you about this invisibility cloak.

Here is how it works.

When you’re hungry, we won’t know it.

That would just make us feel guilty and that’s no fun.

When you start to cry, we won’t see.

Not even when you weep.

Your breath may be faint, soft, like you’re not even there.

Almost inanimate like a statue you are.

To sleep, to dream at night, we will be unaware.

It’s like you don’t exist to us.

When your heart breaks because you can’t be with your children, we won’t have to be uncomfortable.

Because we can’t see you!

Life is good for us when you’re invisible!

Your humanity is not in our faces to reflect what we are doing to you.

We will never know how we killed you in the end.

You will silently slip away from within your invisibility.

Like a vapor into the wind.

Super Bowl 1979

This is the blog of a person I have been a caregiver for for 14 years, whom I consider a mentor and dear friend. He has lived a fascinating life! Check out his blog, you will love it.

Remembrance of Things Past

In January, 1979, the Minnesota Vikings played in their fourth Super Bowl against the Oakland Raiders at the Rose Bowl in Pasadena, California. I was teaching at the Thatcher School in Ojai, California. My parents were original stockholders in the Vikings, and my dad was able to get two tickets to the game. I invited David Lavender, who was director of development at Thatcher, to go with me. David and I have three relatively small schools in common: we were both graduates of Bowdoin College, we both worked at Thatcher, and we both held the same job at Carleton College, albeit 20 years apart. We had made no reservations and Los Angeles; our only plan was to meet some of David’s Minnesota friends for drinks and dinner Saturday night. Saturday afternoon, we left Ojai and headed for Los Angeles. We did meet David’s friends for dinner. After dinner, they went…

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The Magic in Reading

This post is about the love of reading, the joy of curiosity, and finding a rich, meaningful life and learning.

Little Bridget’s mother, Cathy, read books to her children all the time. When I was little Bridget, some of my favorite, most blissful moments were of sitting with my mother on the couch or rocking chair, being read to. She was an amazing storyteller, and never just read the books. She brought them to life.

Often, all of us kids would see how many of us could fit on the couch at one time. We would sit on the back of the couch, perched, angling for a view of the storybook pages. Sometimes, if there wasn’t enough room to actually see the book, we would lie on the floor with our hands behind our heads, listening to the story unfold. Mom had many wonderful character voices. She could add a theatrical flair to any book.

Any of the selections were made by us kids. We would pile into the station wagon and head to the library where we went wild looking for books. We filled our arms with books about everything, books with cassette tapes, books with pictures, and anything that struck our fancy. Filled with anticipation of our latest reads, we would unload our books upon arriving home.

We would even hoard books, to make sure that nobody got their hands on the book we wanted to read before we could. I kept a stash in my room at all times. And I wouldn’t read my books just once. There were books that I wore thin, reading them over and over again.

My childhood was very intellectual. My favorite things to do were to look up at the sky, daydreaming while watching the clouds, and wonder about the universe while gazing upon the stars. I read for hours and had a great plan to read all of the books in the school library. That was a little bit too ambitious, and I never realized that vision. But I did discover many fascinating books in the library at Griffith Elementary School. There’s one book in particular from that library that I can’t recall the title of, that has stuck with me all these years. It was a science fiction book about going through a drain in a pool into another world. I think it actually kind of traumatized me to read it, while intriguing me at the same time. So many great finds in that library!

I became hooked on the Nancy Drew mystery series and started a small book club at school with a couple friends. I think I even allowed my younger sister to be in on that. I spent a lot of my childhood in Phoenix and Minnesota reading about the exploits of Nancy Drew and her friends. They were some of the female role models that I had in literature. Women, young women at that, who solved mysteries. How empowering to have smart female leads in a book series. Surely I was influenced to believe that I could have a career as a detective, or anything else that I was interested in.
Books are the window to the world and all of humanity. I’ve been an avid reader of everything. Fiction, history, drama, philosophy, religion, science, you name it, I’ve read it. I’ve moved more times than I can count in my life, and I’ve hauled boatloads of books with me every time. They are some of my most precious belongings. I’m not big on things, but I can’t part with my books very easily. One of my favorite things to do is to peruse garage sales and thrift stores looking for books that have been well-loved. In my books, I discovered other cultures, other people, worlds I never knew existed. I was introduced to ideas I never would have connected with naturally. I learned about people from different times, stories of people I would never meet.
I learned how to read at a very young age. My earliest memories began when I was two years old, and I started reading at three years old. I actually remember what it was like. It was a combination of story memory and symbol recognition. I first memorized the stories, and then connected the spoken words to the written words. This was pivotal for me, to be aware of my own learning. That joy has compelled me to pursue learning for learning’s sake throughout my life. It has also inspired me to carry on during hard times. No matter what I was going through, if I was learning and growing, stretching and transforming, I could find meaning.

Singing to Babies

Sweetly and softly she sang, gazing out the living room window of a small three-bedroom home in a Mexican neighborhood in Phoenix, Arizona. The street outside was iridescent from the desert heat. And the grass was parched, crispy, and brown. A thirsty palm tree rose up in the far left corner of the lot. Its leaves were still, the air was still. Sweat rolled down the back of the singing four-year-old’s neck, soaking her striped T-shirt.
She stopped singing for a moment to look down at the sleeping baby resting on her chest. She smiled and gently stroked the baby’s soft, velvety pink cheek. She took a deep breath as the baby cooed. She smiled again as the baby’s eyes fluttered, as if he were dreaming. “What do babies dream about,” she wondered, as the baby moved his lips in search of food. Dreams, how fascinating they are. We all have them. From the time we are babies. She pondered the meaning of dreams as the baby became absolutely silent, except for the almost indistinguishable breath through his tiny nose.
Slowly and gracefully she rocked back and forth in her child-sized rocking chair. She sang another song to her little brother, Luke. His wispy blond hair fluttered with the movement. His content face was at peace with the world. In the arms of his older but young sister, he was protected and loved. Together, brother and sister were a cocoon of dreams.
Time stood still, as still as the palm leaves, the hot desert air, and the sleeping baby. It was as if the little girl’s voice was suspended in time, as she sang lullaby after lullaby, and as she rocked baby Luke through all of his baby dreams. She knew many songs by heart. And from her heart she sang them, to all of her younger brothers and sisters. Some of them she had learned in church, some of them in school, and some from cassette tapes around the house-many borrowed from the library. She could sing for hours, and she often did. She was a keeper of children, and a little mother to many. Her name was Bridget, and she was a steward of others’ dreams.
It has been said that a friend is someone who can sing a song back to you when you have forgotten the words. My little brothers and sisters are some of my best friends. And my dad made me believe in my own voice, and my own song. So to this day, I’m not afraid to use my voice, especially if I can use it to serve a greater purpose, and sing a song with others.

Help Us Change the World: Apply to the DCA’s Voices Institute

This is a repost of a blog I submitted to the direct care alliance in 2009.

Bridget (third from R) and colleagues at the 2008 Voices Institute training

Download the invitation letter and an application form you can mail or fax(PDF)

Apply online

“I would recommmend this training to anyone who wants to become a leader,” saysTracy Dudzinski, one of the empowered graduates of the 2008 Voices Institute National Leadership Institute.

The Voices Institute is now recruiting direct care workers to become the next class of leaders in a grassroots movement to strengthen and celebrate the workforce that provides vital services to Americans who need chronic care.

I know very well how important we are: I have been a direct care worker for well over a decade. For most of that time, I lacked a sense of having a connection with other direct care workers and felt powerless over my professional situation.

Then I attended the 2008 Voices Institute and found a network of new friends and colleagues. Being united with others who have a background similar to mine, and feeling a kinship and a bond with people who mirrored me, was one of the most inspirational times in my life.

For an entire week we were immersed in the Voices Institute curriculum, gathered together as a collective voice, overflowing with vision and capacity. Upon graduating from the Voices Institute, we were empowered like never before: stronger, smarter, and better-equipped with tools and knowledge to be effective direct care worker leaders.

Nothing else exists which can compare with the Voices Institute. With each new class of graduates from the Voices Institute every year, we will grow in power from the grassroots level.

If we do nothing to elevate the workforce, we will remain fragmented and overwhelmed. Those who graduated from theinaugural class are a lot of firecrackers who are now unstoppable. We are part of the foundation of the grassroots movement that will make transformative changes for direct care workers. True empowerment and professionalization of the direct care workforce require strong direct care worker leadership.

Now is your chance to step up! Whether you are already a leader, an aspiring leader, or just want to learn how you can lead, this is the program for you. I was once timid about taking leadership, but the Voices Institute changed my life and showed me what I can do. I am now coordinating the Voices Institute and nurturing others on their leadership journeys. Here is your chance to tap into your own potential!

The Voices Institute’s National Leadership Institute is now accepting applications for this year’s leadership development retreat, which will take place from September 27th to October 3rd at the DeKoven Center in Racine, Wisconsin. The application deadline is April 30th, so please submit your nominations and applications as soon as you can. We look forward to welcoming you to the leadership ranks!

Visit the Voices Institute page of our website for more information.

Bridget Siljander
Direct Care  Worker Specialist
Direct Care Alliance

 

DCW Helps Fight Proposed Cuts to Critical Disability and Aging Services in Minnesota

This is a repost of an article I submitted to the Direct Care Alliance, May, 2009.

Bridget Siljander

“Bridget Siljander calls them the ‘invisible workforce.’ Without them, though, the fallout will be starkly clear,” begins a story that ran last week in the Minneapolis-St. Paul Star Tribune,  one of the biggest papers in my state.

The advocacy work that led to my being quoted was fueled by my participation in the Voices InstituteNational Leadership Program, so it seemed appropriate that I was en route to New York City to meet with the rest of the program’s training team when I received a call from the Star Tribune’s Gail Rosenblum. She was writing a story about the personal care attendance program, and when she told two of Minnesota’s strongest advocates for people with disabilities – Anne Henry of the Minnesota Disability Law Center and Anni Simons of The Arc of Minnesota — that she wanted to talk to a personal care attendant, they sent her to me.

I was more than happy to share the positive side of personal care work, a profession that has been denigrated in recent months in my state of Minnesota. I told Gail that the contribution of personal care attendants to society is tremendous, and she clearly understood what I and the others she had talked to were saying. Her article provided a balance to very negative press for personal care attendants that has run rampant this year.

The storm that has personal care attendants in its eye in my state started this January, when the Minnesota Office of the Legislative Auditor (OLA) released a report on an evaluation of Personal Care Assistance Services. What emerged from that study was not good news for the program and has shaped decision-making in the Minnesota legislature ever since.

According to the OLA report, “Personal care services remain unacceptably vulnerable to fraud and abuse.” The report also notes that total annual spending for Minnesota’s PCA services exceeds $400 million, with the implication that much of this spending is wasted on fraud. The public reaction to this information has been full of rage, even cruelty. This has prompted the governor and legislators to try to slash funding to the PCA program, in a misguided attempt to reform what is actually a low-cost program that is responsive to consumer needs.

The people who need personal care services depend on them to live independently in communities of their choice, manage their health, reduce safety risks, and avoid higher-cost services and settings. The program is designed to fit a great variety of needs while providing a higher quality of life than would be had elsewhere.

Nobody is more offended by the fraud that diverts some of the much-needed funding for PCA services than personal care attendants, the people who use their services, and their advocates and family members. That’s why we were all so glad to read Gail Rosenblum’s article, which was infused a much-needed dose of respect and acknowledgement of the importance of PCA services into the discussions around personal care assistance.

I have spent a great deal of time at the Minnesota Legislature during this session in efforts to promote the value of personal care assistance services. I have met an impressive group of people there — passionate advocates who come from a multitude of backgrounds but share a common purpose.

Several of these powerhouses are my fellow board members of the Direct Support Professional Association of Minnesota. Lance Hegland is a consumer of personal care assistance services because he experiences a form of muscular dystrophy. He is also the founder of PRECISA, Inc., which provides organizational consulting, and a regular contributor to Minnesota’s disability newspaper, Access Press. Lance manages his team of workers with respect and appreciation and advocates for workers with the same high regard. A tireless and impressive advocate, he led the first direct care worker celebration in 2008 in commemoration of National Direct Support Professional Recognition Week, which was designated by a Senate Resolution. He is active in many public policy activites on behalf of workers and is one of the most dynamic members of the Direct Support Professional Association of Minnesota.

Brigette Menger-Anderson, a former career direct care worker, is a manager for a consumer-directed PCA program with the Metropolitan Center for Independent Living and deeply committed to the development and advancement of the workforce. Her program employs 450 personal care attendants and provides supports to 135 consumers. She works closely with senators and legislators to improve the quality of the Personal Care Assistance program for both consumers and workers. Brigette gave an interview last year to Minnesota Public Radio on gas prices and their effects on seniors and people with disabilities, which was later broadcast by National Public Radio. The story was thenpicked up by the New York Times and covered by Access Press. Brigette is admired for her advocacy work in Minnesota and treasured by many for her optimism and wit.

A large part of our responsibility as advocates is to educate others – particularly decision-makers – about the importance of direct care work. There is much more to do in that regard, but we will fight this battle until the work I am proud to do is made attractive enough as a career option to attract and keep the robust, plentiful workforce we need. We want to be surrounded by PCAs who are fairly compensated, respected, and providing high-quality services and care.

Until that day comes, my fellow advocates and I, who know exactly why we get up and go to work on this issue every day, will stay focused on our common vision. And in the meantime, we are pleased and grateful for milestones like theStar Tribune article, which let us know that there are many people out there who see this “invisible” workforce and hear what we’re saying about it.

Bridget Siljander
Direct Care Worker Specialist
Direct Care Alliance

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If I Can Do It, So Can You!

This blog is a repost from an article I submitted to the Direct Care Alliance, February, 2009.

Earlier this month, I had  a long talk with someone from the Wage and Hour Division of the Office of the Secretary of the Department of Labor. She had called because she wanted to hear what I had to say about the exclusion of home care workers from the federal Fair Labor Standards Act.

Why did the U.S. Department of Labor call a direct support professional for input on a federal ruling? Well, that’s a long story.

It started when I joined my state direct care worker association a year and a half ago. I had no idea what to expect — and I certainly didn’t expect to become the president. But that’s what happened in the second meeting, when I was voted president of the Direct Support Professional Association of Minnesota because of my leadership initiative. I joined DSPAM as a part of a board revitalization, so a number of us were new. I was not only new but a virgin advocate, if you will.

In the coming months, I would learn about how to run effective meetings, oversee activities, talk publicly about my organization, and more. The learning curve was painful, but I loved every second of it. I loved it for I am a direct care worker who knows how much we are worth, but how little we are valued.

My frustration is what motivated me to want to advocate. I was out to show the world how important we workers are and why we deserve better.

My education as an advocate was compounded when I was selected to attend the Voices Institute, a leadership development program designed by the Direct Care Alliance. I was completely transformed as an advocate during the week I spent in this retreat-style program last May. A lot has happened since then– lots of amazing opportunities to advocate and grow as a leader.

Now, let me show what I can do!

Early this year, the Direct Care Alliance supported me in writing a letter to the Secretary of the Department of Labor. I told Secretary Chao about my background and my deep concerns about the current Fair Labor Standards Act regulations that exclude home care workers as “companions.” I used my personal story to illustrate how these regulations are harmful to workers and how sub-standard compensation forces many direct care workers into a poverty cycle, which in turn, costs more tax dollars in welfare aid. I stated that if our long-term care system is to survive, these regulations desperately need to be changed, especially considering the upcoming explosion that will occur in demand for home care workers.

Someone heard my voice in Washington D.C. I received that phone call from the Department of Labor. The caller wanted to “clarify the information” in my letter.

I had a very long conversation about the regulations with the person who called me, and was encouraged to put pressure on Congress to change the exemption to allow minimum wage and overtime pay protections. This person told me that with enough pressure, laws have been changed in the past. “It would be good for workers to band together; you can make a difference,” I was told.

When workers are knowledgeable about issues that affect them because they have a source to inform them, they can have an impact like I did. The Direct Care Alliance is helping workers to do this. They are the source for direct care worker empowerment. I know it first-hand and because I connect with workers every day who have been touched by the Direct Care Alliance in a meaningful way. We have the support we need to advocate for ourselves.

And if I can do it, so can you!

Bridget Siljander
Direct Care Worker Specialist
Direct Care Alliance

The exalted Oppressed

Angels in disguise

Blessed souls

so kind of you

giving your life for others

there is a special place in heaven for you

Your rewards will be great

after you die.

while you are alive

you are lucky enough to serve others

And that should be enough don’t you think

we love you for it

you make a difference

you are such a wonderful person

we wish the world had more people like you

If only we could pay you

Make it so you could take a day off

but we have no money

what a shame

what a pity

at least you were called to this work

so you will be happy to do it

until you die

Penniless

alone

Destitute

worn out

sick

life unlived in any way beneficial to you

but you were a saint

a good person

we honor you

but we will never pay you

not ever