Miracles Won’t Happen If We’re Afraid to Take Risks

Carol A. Hand

When I wrote A Birthday Wish about my hopes for the future, I seriously questioned whether sending the list to my Congressional Representative would even matter. I hesitated to send it, and I questioned whether it was worth posting on my blog. The list I wrote was simple, hardly something that would ever be seen as a cogent political analysis, a meritorious literary contribution, or even a realistic possibility. I suspected I might even be easily dismissed as a “wingnut” or flakey romantic. Then, it occurred to me that people need to have the courage to share what’s in their hearts even if others judge them as ridiculous. I was motivated to write because of my concern for my grandchildren’s future. It was my grandson’s sixteenth birthday and I was inspired to reflect about the world I wish for him and all of the children of the future. But I remembered something Albert Einstein wrote and decided to send the email and post my reflection.

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” (Albert Einstein)

 

dandelion

Photo Credit: Dandelion Resilience

This morning I found myself wondering what would happen if every one of us sent a letter or email to our congressman or senators listing our hopes for the future. What if we sent one every week? After all, my email account is bombarded daily by scores of fear-based messages listing all of the threats we face – threats to animals, the environment, and people. I care about all of these issues, but they’re all connected. Sometimes I sign the petitions (although I can’t afford to make the requested donations), but I doubt that petitions will have much impact. None of the petitions really address root causes, and all are focused narrowly on addressing a part of one issue for one species or group. And all are really focused on problems, with quick-fix solutions that are firmly nested within prevailing solutions’ paradigms. Why not turn it around and connect the dots – identify the underlying causes and address those as a set of positive goals that describe the best we can imagine?

What is the best I can imagine? It’s a question I learned to ask in the first job I had after I finished my master’s degree. As Aging Network Supervisor for the Bureau on Aging, Wisconsin Department of Health and Social Services (DHSS)*, my job, with assistance from the five professionals I “supervised,” included developing the details of state policies for aging programs delivered by an array of regional, county and tribal agencies. (Really, any influence I had over what Network staff did was hard won by earning their respect, but that’s another story.)

The first six months of my job mostly consisted of responding to mischief fomented by the directors of the two most conservative regions farthest away from the State Capitol where I worked. Ed and Jerry (not their real names) sent an unceasing number of letters to the Secretary of DHSS and the Governor alleging that the Bureau on Aging had violated fiscal and administrative policies. Although I no longer remember the details of their allegations, I do remember that I spent at least 75 percent of my time scouring legislation and administrative codes to write responses to their charges. I vowed to myself that I would find a way to shift the focus so they would be responding to positive initiatives that the Bureau initiated. It took six months to begin turning the tide. I travelled to both regions with Bureau staff and got to know the agency staff, advisory council members and boards of directors, and I listened to the concerns of the older citizens in the region. I also observed the way the two directors omitted key facts and misrepresented the information they shared when they met with the elders on the councils and boards.

Information is power. People are easily manipulated if they don’t have all of the facts. I began to ponder a number of possible strategies. What would happen if state staff were a regular presence at all of their meetings, to listen and share accurate information? Would boards be able to make wiser decisions if they were better informed? And what if we took the time to actually consult with them on crucial decisions that affected the funds they administered and services they provided?

We decided to explore whether increased state staff presence would make a difference. It was certainly easier than continuing to deal with the never-ending irritation of responding to negative non-issues. Staff, including the Bureau Director, became a permanent feature at board meetings for all regions. Relationships and communication improved, as did the quality of policy decisions. The elders on the boards felt their views were important and their thoughtful input helped inform policy decisions. Soon, Ed and Harry were kept busy responding to the agendas proposed by elders on their boards, and the allegations they leveled at “THE STATE” ceased.

The important point is that Ed and Harry did highlight a crucial issue – the Bureau was not doing its job well. We were not making the effort to involve rural elders in the decisions that affected their lives. The elders we ignored didn’t know that they should and could have a voice. The problems Ed and Jerry uncovered helped me identify what we needed to do to include elders who had been ignored. My job, after all, was to serve as an effective and visible advocate in partnership with elders, particularly those in greatest need.

When I was initially hired by DHSS, I commented to my faculty advisor at the time that I was afraid because I really didn’t know anything of value. How could I possibly develop policies and oversee a State network? His response, chuckling, “Don’t worry. You won’t have any power to do anything in a state bureaucracy. They never get anything done.” I was revisited by a similar thought after I wrote the letter to my Congressional Representative. Why bother? Who cares what I have to say? I’m no one special.” Then, I remembered my own experiences. When I worked for state government, it was my job to listen to the people who were directly affected by the policies I helped to develop and implement. It was not my job to serve the power interests of petty bureaucrats like Ed and Jerry who wanted to manipulate others for the own agendas. In essence, at least in theory, it’s much the same job as that of an elected official in a representative republic.

The challenge as I see it how is to let legislators know what constituents really need now and want to see in the future. Legislators don’t have time to understand many issues in depth or look for the root causes, so they rely on their staff, policy think tanks, lobbyists, and opinion polls like the one my representative sent me. They are not likely to read our blogs. But what if we each decided to send at least one letter or email a week that made it easier for legislators to access accurate information about their constituents’ needs and visions, along with thoughtful suggestions for addressing the root causes? Many of us have accepted the fact that those in power won’t listen to anything we have to say, like the elders in the state regions Ed and Jerry oversaw. But what do we lose if we try? If enough of us communicate with our legislators on an ongoing basis, things may begin to change in a positive direction. Who knows, some of our ideas may take root and blossom like seeds of dandelions that come to life in the cracks between slabs of concrete… Miracles may happen if we continue to share alternative views of what could be.

two views of power

Photo Credit: Two views of power (Bill Moyers (2001). Doing democracy: The MAP Model for organizing social movements. Gabriola Island, BC, Canada: New Society Press.

*Note: The structure, names and functions of state agencies have changed many times since those years.

Copyright Notice: © Carol A. Hand and carolahand, 2013-2016. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Carol A. Hand and carolahand with appropriate and specific direction to the original content.

 

Reflections on the Importance of Knowing One’s Purpose: Blogging 101

Carol A. Hand

“I really HATE that report you’re working on!”

Imagine hearing this this every morning as you walk through the door to do your job. Delivered in a strident nasal tone, this was my supervisor’s greeting and her commentary on my efforts to develop the first-ever report on the demographics and services for elders in the state. Each morning, my response was the same. “I welcome any specific suggestions you have to improve it.” None were ever offered by my supervisor, but fortunately, the director and staff all provided assistance, ideas and support as part of a team effort to write, organize, and illustrate the final product.

AW cover

Photo Credit: Aging Wisconsin – Cover Page

The report, Aging Wisconsin: The Past Three Years: 1984-1986, was so popular that the first 6,000 copies went quickly. Even during tight budget times, the report went through a second printing and generated hand-written letters from elders thanking us for creating something to make their lives better. My supervisor never liked it, but I now realize she really wasn’t the audience, nor were legislators, administrators, or academics. The report was written to help elders learn about the range of services and supports available to improve their lives. Focusing on task completion is important, yet I also learned an equally important lesson about the value of process from my supervisor, although not the one she probably intended. Any project can be approached from a coercive power-over stance, or from a liberatory joyful stance. The staff and director, often easily divided by petty issues, joined together to produce something that was fun and gave them a sense of purpose and pride in their work.

AW nursing home

Photo Credit: Aging Wisconsin – Long Term Support

AW transportation

Photo Credit Aging Wisconsin – Transportation

AW caregivers

Photo Credit: Aging Wisconsin – Caregiver Support

AW home delivered meals

Photo Credit: Aging Wisconsin – Home Delivered Meals

AW housing

Photo Credit: Aging Wisconsin – Housing Options

As I look back on this experience, I realize how grateful I am that I had the opportunity to work on this report shortly after graduating from college. I am grateful to the director who believed that I could do it, and the staff who offered their support, assistance, ideas, and encouragement. I am grateful to the elders who penned hand-written thank you notes. And interestingly, I am grateful to the supervisor who kept spurring me on to do the best I could with what seemed like an overwhelming, impossible task at the time. Today, looking at the photos we gathered for the report so many years ago, I am grateful that I didn’t give up trying.

AW fiends 1

AW friends 2

AW volunteer

AW adult daycare

Photo Credit: Aging Wisconsin – Community Support

I left that job decades ago, but this memory resurfaced this morning as I reflected on today’s blogging 101 assignment, reviewing the About statement for Voices from the Margins.  The memory and the assignment both remind me that it’s important to be mindful of purpose. Not everyone will like what you do, and that’s as it should be. Knowing that I was hired to serve elders in the state, not the whims of my supervisor, helped me find creative ways to build a team to be successful any way. Clarifying the purpose of the blog helps keep me focused. I have attempted to explain our blog’s purpose. It’s a space that celebrates diversity and welcomes creative efforts to resist status quo critiques. a place to give voice to different “truths.” Like all bloggers, I hope people will read what I write and engage in dialogue, but I also try to speak about what I see as important during these challenging times.

(A final note: I just couldn’t decide which photos to share so I went a bit overboard I fear 🙂 )

Work Cited:

Carol Hand (1988)(Ed.) Aging Wisconsin: The past three years – 1984-1986 progress report on the Wisconsin State Plan on Aging. Madison, WI: Bureau on Aging,  Department of Health and Social Services.

In Honor of Caregivers

Carol A. Hand

After my policy class this week, I decided to write about a project I coordinated many years ago to address elder abuse. After reading the first draft, I realized that it was missing important details about the challenges caregivers face. That meant I had to face my dreaded file cabinets!

As a child who loved not only to read, but re-read, it was sometimes excruciating to live in a house that had very few books. Although I discovered the public library, I never wanted to return the books I borrowed, resulting in overdue notices and fines that were so embarrassing. I learned to avoid the library if at all possible. As an adult, I started buying my own books, and as a student and professional, I collected copies of every article I read and every handout I gathered from workshops. The number of bookcases and file cabinets I needed grew each year. My file cabinets have taught me an important fact about myself. I am a piler, not a filer. On the days I am determined to organize papers, I come up with logical ways to sort and label. But when I am working on something and need just the right information, I am never able to remember the logic! If the articles are piled, I have little problem remembering which pile it might be in – because I have had to look through every pile hundreds of times to find things. But once they disappear into closed drawers in neatly labeled file folders, I become paralyzed with indecision. “How did I categorize this article in my all-too-fleeting moment of analytic clarity?”

DSC00301

Photo Credit: The messy process of looking for details

I have learned to avoid my file cabinets as assiduously as I avoid libraries. But I have kept stuffing new things in them – there are now 5 of them with extra file drawers in 2 desks. But I haven’t left them behind as I moved from state to state – I might desperately need something that is in them someday! I really did intend to clean them out before my last move, but I only had 3 weeks to get ready and sorting files was just not a priority.

Adding details meant I needed to face my file cabinets. The only way I could ethically describe details from a project so long ago would be to overcome the resistance I feel when I even walk into the room where they are arranged and overcome the dread of opening the drawers. But I did face the challenge and actually made an important discovery not only about the project details, but also about myself as a much younger program developer and person. Even then I really did “walk the talk” of community-driven program development and egalitarian partnerships. Now I think I can tell the “real” story …

***

Many years ago, I made the decision to leave a well-paying job as a planning and policy analyst for a state government to pursue advanced education and the opportunity to keep learning. In part, my decision was based on the outcome of a recent gubernatorial election. A job that had once made it possible to advocate for improvements for elder services shifted to constant surveillance of every conversation I had with constituents and written justification for every exchange with legislators who requested information. It also shifted from developing innovative new programs to defending programs that were important for elders’ survival and well-being. And in part, the decision was because bureaucracies are stifling places to work even in the best of times. The political appointees who set the agenda for executive branch activities rarely have the power to make many changes that actually improve peoples’ lives within or outside the organization. They can, however, easily make it worse.

To help pay my tuition, I decided to take on a part time job coordinating a federal research and training project to develop and test an intervention to address elder abuse, The Male Caregiver Training Project. The project, conceptualized by a professor and a graduate student, was intended to reduce elder abuse by targeting men who were providing care for older relatives – parents, wives, siblings, or other relations. Although men were less likely to be family caregivers (about 25% of family caregivers at the time), they were more likely to be reported as perpetrators of elder abuse (about 66% of reported perpetrators were men). The assumption of the grant writers was that men who were at risk of abusing elders would voluntarily agree to attend eight, two-hour “training” sessions that were based on behavior modification techniques. The “trainers” would be social work graduate students under the direction of the professor, and the results would be measured to determine the effectiveness using pretest and post-test self-reports. The student who was going to coordinate the project left just as the funding was awarded, so I was asked if I would be willing to coordinate the project.

Of course, I didn’t know all of these details until after I accepted the position and read the grant. As soon as I did, I was amazed that such a proposal had been funded and set out to conceptualize something that might make a difference in the real world. What did I know about being a male caregiver? Really, not much. The only way to learn more was to talk to men who were caring for relatives. I also needed to meet with key staff in the two pilot counties to build trust and partnerships. And the best way to build authentic partnerships was to change who led the sessions. What would university students know about the communities and resources for caregivers? Community staff already had contacts, credibility, and knowledge. Why not involve them not only as leaders of sessions, but also as partners in designing what the intervention would actually involve? And if the intervention was successful, wouldn’t it make more sense for community staff to have a vested interest in seeing the sessions continue after federal grant dollars ended? I called the federal project manager to present my suggestions, and he became excited by the possibilities.

tools of the trade caren caraway

Photo Credit: Artwork by Caren Caraway for Tools of the Trade for Men Who Care

I met with the directors of human services in both counties and found a key staff person in each who agreed to work with me. They helped me find men who were willing to talk with me about their experiences. The men I met with all had so much to teach others about tenacity and compassion. They also had a great deal to teach me about the types of support that would make their lives as caregivers easier.

The stories I heard were a testament to the best people can be. Six of the seven men who agreed to meet with me were, or had been, caregivers for their wives and were themselves in their 70s or 80s. One was a primary caregiver for his father in his 80s who was experiencing mobility and self-care challenges. A few were understandably guarded in their comments, while others saw the interview as an opportunity to share challenges, sorrow, and struggles with anyone who was willing to listen and care. Alzheimer’s and dementia were the reasons men were caring for their wives. They spoke, often tearfully, about the loss not only of someone they loved to a disease that erased memories and made them strangers, but also about the loss of their closest friend and confidant. They saw it as their responsibility to provide care, often at great personal cost as they dealt with their own physical limitations and financial challenges. Most importantly, they all felt alone. There was no one to talk to about the conflicting emotions they faced. There was no one who could share the physical burden of doing all the cooking, cleaning, shopping, and being on call 24 hours a day. They did the best they could as caregivers because they cared, and they did it alone because they didn’t know anyone they could ask for help or information.

So I summarized the findings, and with the help of my partners in each county, held a general planning meeting in each county that involved all of the key agency staff who dealt with elder issues and services. The purpose was to identify a team in each county that was willing to help develop and present the sessions. I spent a sleepless night before the first community meeting. Yes, I had these powerful interview summaries, and based on that, a suggested list of topics. But we couldn’t call this the Male Caregiver Training Project! Training is something that is done to horses, not that I recommend this approach for horses, but it certainly shouldn’t be how we work with people. As I was taking my morning shower before the meeting, I had an epiphany – we should call the sessions Tools of the Trade for Men Who Care. It highlighted the fundamental strength of the men who shared their stories, and reflected the suggestions they had for ways to help.

Staff in both counties identified resources that could serve as tools and resources to help caregivers. We all learned a great deal from the first workshop session in each county. We thought it would be difficult for men to share emotions, so we began with more informational topics. Yet during the first session in the first county, the men who participated shocked us with their willingness to share the depth of their distress – some spoke of contemplating suicide and murder – so we added crises counselors to the workshop teams. After testing and revising the intervention, six more counties tested the approach. More than 60 men participated in all during the project. Ten years after the grant ended, most of the counties were still conducting sessions, not only for men who were caring for relatives, but also for women. It spread to other counties and other states and eventually was nominated for a national award.

What made the experience rewarding for me was not public recognition. It was the opportunity to meet people, caregivers and staff who cared deeply enough about others to make so many personal sacrifices, and the honor of hearing their stories and working side-by-side to create an intervention that succeeded in improving some peoples’ lives. Among those I met was a reporter for a local paper who captured the essence of the challenges of caregivers and the importance of providing resources and opportunities for sharing.

…For better, for worse. For richer, for poorer. In sickness and in health. To love and to cherish, till death us do part.

When Jacob and Martha exchanged wedding vows 45 years ago, he was an Army private and she was a schoolteacher. “She was a lovely little gal,” he said as he pulled out a black and white photograph – now yellowed from age—of their wedding day from a manila envelope. “Wasn’t she something?” he asked, speaking more to himself than to a recent visitor….

Like many couples, Jacob and Martha, not their real names, worked for the day they could retire and spend their days growing old together. Today, they are in their 80s, but their dream of carefree retirement is tarnished. Martha has Alzheimer’s disease…. She is easily confused and requires 24-hour-a-day care. Jacob provided that care. Despite his own failing health, he dresses, bathes and feeds his wife. He cooks, cleans the house, does the laundry and orders groceries to be delivered. He is with his wife all the time, declining offers of respite care because, he says, “it upsets her,” when he is gone. Her illness dominates his life….

Jacob was one of the six men who attended the first [Tools of the Trade] workshop series offered last fall…. “It’s was kind of nice getting out,” Jacob said. “The workshop was a very good thing for me. It helped me realize that I’m not alone. I had a chance to talk with others who are in similar situations.”

(Carla McCann, The Janesville Gazette, Wednesday, April 11, 1990, p. 1C)

***

I didn’t realize until many years later that I would need to know what I learned from caregivers during this project. I remember when my mother first realized something was happening to her. I went to pick her up because she had driven to visit my bother and could not remember how to get home. On the ride home she said, “I don’t know what is happening to me. I can’t remember things. I am so humiliated. I don’t want people to see me this way.” It broke my heart to know that this gentle woman who outlived her husband and survived years of abuse always wishing for a chance to enjoy life would never have that opportunity. At least, I thought, the bad memories will disappear as well.

Dealing with file cabinets has led me down memory lane with memories that are both grateful and sad. I think I will quickly find a place to stuff the project folders back into drawers and wait for the next polar vortex before opening them again. Yet I am grateful that I remembered how many kind and loving people I have met in my travels. I am sharing these memories to say miigwetch (thank you in Ojibwe) to the caregivers of the world and to those who support them.

***

 

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