Over the past 30 years, hundreds of people from diverse backgrounds and life experiences have come together to strengthen the Atlanta & DeKalb communities through one-to-one Citizen Advocacy relationships. Some of these relationships were intentionally short term, but many ordinary citizens and their protégés have benefited from the gift of a long lasting relationship. Here are several stories of those who have shared the gifts of long term Citizen Advocacy relationships.
Ordinary people doing ordinary things of extraordinary importance!
A New Journey
Donna and Edith began their citizen advocacy relationship in February of this year. Two ladies, living less than 3 miles from each other, but whose worlds were so far apart.
Donna lives in and works from her own home in a fashionable Decatur neighborhood. She is educated, autonomous and savvy. Donna is genuinely compassionate and wants to make a positive difference in the world. She sees people; she sees their pain and is compelled to respond.
Edith, who lives in a nearby nursing facility, is friendly, gracious and polite. She is a careful listener with an outstanding memor which helps her to hold on to her past and make some sense of her present. Edith has few personal possessions and limited opportunity to engage the world outside of the nursing facility. She seldom has opportunites to make decisions for herself, often feels isolated and lonely, and has endured injury as a result of her isolation. But, like Donna, Edith is compassionate and concerned about those around her. Edith sees people; sees their pain, but is powerless to take action.
Edith and Donna's worlds have been brought together by Citizen Advocacy of Atlanta & DeKalb, Inc. The two are trying really hard to get to know each other's story and each is learning about much about herself as she is the other person. Edith is being challenged to explore new thoughts, foods, and life options. Donna is learning about setting boundaries while still asking, "What could be better for Edith," and then grappling with how to move forward in an overwhelming, sometimes impossible, situation.
Together the two have begun reaching out to others who live in the nursing facility. Edith lets Donna know who she thinks is lonely so that Donna can bring extra magazines when she visits. Sometimes, Donna brings flowers to Edith to brighten up the room she shares with 2 or 3 other residents who are much older and have no visitors.
Some interesting things have happened for Edith since Donna began visiting regularly. Nowadays, Edith willingly takes her medication and as a result has not had a recent trip to the emergency room. Edith is now receiving regular physical therapy for her fractured knee, and Donna says, "I see her getting better." Donna has spoken to Edith about the benefits of eating less "junk" food and has even brought the need for better nutrition to the attention of a staff person. Recently, Edith and Donna even shared Edith's story with Joe Shapiro for a series about younger people being forced to live in nursing facilities, which will be aired on Nation Public Radio in the fall.
We will let you know when the program airs. In the meantime, these two will just continue on their journey... together.
Michelle & I
"Derona did a great thing when she found YOU to be my advocate, Zak!" Michelle tells me at least once every time we get together. Michelle and I were matched at the very beginning of this year.
I have to say, she is right: together, we are one heck of a team. We share more commonalities then would at first be apparent to the casual observer. Certainly, our friendship, bond, and our advocating together, have helped to keep me positive during a tumultuous chapter in my life. Michelle is often very positive about the things I have helped her with. Having someone appreciate your voluntary commitment to them is as good as a paycheck any day!
Michelle has reminded me time and time again how important two things are in life: 1) Being grateful for what you have, and 2) each of us has some challenge that we must over come. Some of our challenges are apparent, and for some of us they are not so obvious. Being Michelle’s citizen advocate reminds me how we can make a difference in another person's life and in the process make our world a better place.
Our partnership has helped both of us face the loss of our fathers, battle our shared moments of depression, and turn our feelings of hopelessness back into the fight for moving on to the next page or next chapter in each of our lives. Michelle's willingness to battle her current reality and keep hoping for a better future is awe inspiring. On top of all of that, we have become really good friends. She reminds me when I need to stop and listen and I some times I remind her when she's making drama out of nothing. We do an amazing job of making each other laugh -- often at the same time. Out in public, people often ask me if Michelle is my daughter. Both of us always answer: "Yes!"
Our battle for Michelle to be treated humanely at the nursing home where she's lived for over three years has at times, knocked the wind out of us both. When I think about it, I can't imagine living there even a week. Seeing first hand people who allow their bias or unhappiness affect how they treat a person that they are paid to provide care for can be demoralizing. Confronting the institution's uncaring administrative "leaders" who ignore and deny the cruel behavior of their staff scares me to my bones. Knowing that anyone could survive under such treatment for a week, let alone for years, reminds me how strong and amazing Michelle truly is.
Michelle's life is about to have a new and exciting chapter. She was recently approved for Section 8 housing. We've been looking for an apartment for her. Soon she will finally be in a home of her own. Michelle has voiced concern that our relationship will end once she's moved into her own place, but I am not going anywhere. Like Michelle said, Derona did a great job of matching us. Our friendship will most continue; Michelle and I are family.
Advocacy, Friendship, Family - Spans 30 Years
“We made a commitment . . .
. .
Here we are over 30 years later!”
In 1975 Bill Gates coined the name “Micro-soft”; Mitchell, Haldeman, and Ehrlichman were convicted of the Watergate cover-up; the fall of Saigon ended the Vietnam War; Ali defeated Frazier in the “Thrilla in Manila”; the first episode of Saturday Night Live aired; and in Atlanta, Tim and Mary Yoder were falling in love with a beautiful little girl named Denise.
Even before Mary and Tim became citizen advocates in 1975, they had set out to prove that the world was not going to limit Denise. Mary first laid eyes on Denise in 1970 when Denise was only five years old and living at the Georgia Retardation Center.
Mary visited Denise often but recalls one particular Christmas going to Denise’s cottage to find that she was the only child out of sixty who had no family to visit for the holiday.
By 1975 Denise was visiting Mary and Tim two weekends a month at their home. They would do what Mary called “family stuff”: housework, playing outdoors, grocery shopping, and cooking. In 1977 Mary and Tim moved into a new home where Denise had her own bedroom to stay in when she visited. It was during these weekend visits that Denise made friends and learned to ride a bike.
Denise loved bike riding so much that Tim and Mary bought her one to ride at the institution. But despite Mary’s insistence, Denise was never permitted to ride there. Now they had two bikes at home but no Denise. They attempted to bring Denise home to live with them but the state of Georgia did not permit interracial foster parenting. So, Mary and Tim became involved in identifying a suitable foster home for Denise.
Through the years Mary and Tim advocated vigorously for Denise, but they were always aware that she just wanted to have a real home where she could be with the people she loves and who love her.
In 1986 Mary and Tim finally welcomed Denise home to her own apartment upstairs in their house. The next year Denise landed a real job where she has worked faithfully until this day. The three now share their lives as a family.
Denise values her independence and celebrates her accomplishments but says that, “If Mary and Tim were not here to help me my life would be a living hell. I would be lonely or get into trouble. I would probably be dead.” Mary says, “She gave me someone to nurture and now that she is older I would be missing my best friend and Tim would not have anybody to tease.”
There is an adage that says, “You can choose your friends, but you can’t choose your family.” This relationship proves that adage wrong. Denise, Mary and Tim have chosen to become both family and friends. Mary comments, “When we met we were not sure how long our relationship would last, but we made a commitment to see where it would go, and here we are over thirty years later.”
Because We're Friends Susan Phillips is a fifty-something courtesy clerk at Kroger who loves the color purple. She’s a Starbucks coffee drinker and a cat lover. She’s a model citizen who will do anything for a friend. And she’s my friend for life. Susan and I met in the spring of 1998, and shortly after that I agreed to become her advocate, promising to be a friend to her, to act on her behalf, and to be loyal to her interests and rights. When I made those promises I wasn’t sure where they would take me, but today I recognize that my life has been immeasurably enriched by our relationship. Over the years we’ve had many adventures. We’ve enjoyed shopping (another one of Susan’s passions!), eating leisurely breakfasts out (she likes three eggs over easy, bacon, grits, white toast), or grabbing a burger on the go. If I have a special errand to run, she’s happy to come along on her day off. We’ve shared holidays and birthdays and lots of laughs. She’s watched my children grow from middle-schoolers to young adults. She’s put up with my husband’s good-natured teasing, and she’s teased him back. Along the way, we’ve shared some tough times. Last year, Susan lost two close relatives (her brother and his son), as well as her beloved cat of eighteen years. This year, Susan and I encouraged her ninety-year-old father when he moved from his apartment to a residence for seniors. Then she and I supported his hard decision to give up driving, even though it means they will now see each other less often. These days, the three of us spend a lot of time thinking and talking about life, death, and the effects of aging.
Susan and I have shared ordinary times, too, and in those times something special always happens. Because we’re friends, Susan can call me and ask how to spell a word. She can ask me to help her write a note to a friend or a request to her employer. Because we’re friends, together we can negotiate a way to solve a problem that needs fixing. A few weeks ago we organized her monthly bills and receipts in a new folder (purple, of course). Soon we’ll be going through her summer clothes to decide what to keep and what to give away. Our friendship means that I help with tasks that are difficult or impossible for her, such as reading and following cooking instructions. A few weeks ago, we made a pitcher of sweet tea. Making that pitcher of tea—an ordinary task on an ordinary day—was, for me, an extraordinary moment of our friendship.
To Susan and me, friendship means that we have come together, found that we are more alike than different, and discovered that our lives are better, fuller, richer, and more meaningful because we have taken the time to know each other. For life!
Dana Campbell
Citizen Advocate
Jackie came into Gillian’s life 14 years ago. Jackie’s home life was in constant turmoil and she was routinely subjected to grave abuse. As her citizen advocate Gillian’s gracious and sometimes persistent presence has provided opportunities to level some of the imbalance in Jackie’s world. Their relationship has ebbed and flowed like most relationships, but always there is the connection that can only happen when two people really know and love each other.
When her smile breaks through, Jackie’s eyes light the fire
of our relationship. She and I both know we are loved,
acknowledged and welcomed into this eternal web of life.
- Gillian Grable, Citizen Advocate
Subtle But Powerful Protection
His large, athletic frame lies still. He uses only his dark eyes to communicate. They tell a story of segregation, isolation and incarceration. Chris has been separated from his family, not by his choice or his family’s, and made vulnerable to a system that claims to be protecting him. But, no one was protecting him. No one was considering what was in Chris’ best interest. And, no one was seeing things through Chris’ eyes - until he met Laura.
Chris is a strikingly handsome man in his mid-twenties. He has a strong face, powerful jaw-line and broad shoulders. His eyes are dark and complement his flawless amber complexion, which is characteristic of his Hawaiian heritage. He is taller than most men, measuring well over six feet He is quintessentially, tall, dark and handsome.
Basketball is his sport of choice. His father, a former professional basketball player, mentored Chris in the game in his early years. Like many young men he aspired to follow in his father’s footsteps. He dreamed of being courtside, but now only watches the game from his nursing home bed, where he has lived for the past three years. As a teenager, Chris sustained a traumatic brain injury as a result of a fall, doing what he loved, playing basketball.
Chris and Laura met in March when she agreed to become his citizen advocate. Laura visits with Chris often, and experiences the sights and sounds of his world at various times of day. Laura has come to know Chris in a way that others do not. This knowledge has become a very subtle, but powerful form of protection.
Laura has addressed issues to the nursing home staff that only someone who is sensitive to the needs of another might discern. She has, for example, voiced concern that Chris was constantly positioned in the same place in the hallway when she visits. She once noticed that he did not smell the way he should and typically does. On another occasion Laura observed that Chris’ complexion was unusually red, which was an indication he had been given the wrong medication. During another visit Laura detected that Chris’ feeding tube was not inserted properly, which she also brought to the attention of the nursing home director. These situations were immediately rectified.
It is in Chris’ best interest that Laura remains vigilant and present. Laura realizes this as she is the only unpaid person actively involved in Chris’ life. She speaks of his gifts because he speaks to her heart.
Laura Wilson
Citizen Advocate
Nick was invited to be Gail’s Representative Payee 27 years ago.
Gail was happy to have someone to help manage her monthly income, and Nick was happy to be of assistance.
However, their relationship has involved far more than payeeship. Nick stood by Gail through the loss of family members, surgery, personal and family crises, and the challenges of single parenthood. He was there as Gail’s infant daughter grew into a young woman. Even today he is concerned with helping Gail find a real home of her own. Nick sincerely cares for Gail. In turn, Gail has a deep respect and trust for Nick.
He has been the one constant in her life for nearly three decades, providing the security that only comes from knowing that someone truly cares for and values you.
Someplace Deep Inside Me Said "YES."
Before I met Robin, I seriously questioned whether or not we would be a good match and wondered if I could actually connect with him. But I definitely wanted to meet him. At the time he was about 16 and living at a school in South Carolina, but within a couple of years he would have to move out. So, along with his mother I went to meet him. Having made no commitment, I just wanted to go with an open mind and be open to the possibilities.
During that meeting with Robin I couldn’t help but try to imagine myself living his life - someone unable to hear or talk and separated from loved ones, but someone who gets a lot out of going for walks and riding in cars and who loves to eat and do puzzles -- such pure simple joys. I could just be with him, enjoy his company and do things with him that he loved to do. I could treat him the way I would like to be treated. And someplace deep inside me said, “Yes” to Robin. It was undeniable. His gentle soul opened up my heart to him.
Once I got involved in his life, the desire to advocate for him propelled me. One crucial suggestion was to establish a Circle of support for Robin. So, I gathered together a small dedicated group of compassionate and concerned individuals that offered many helpful suggestions, especially on how to obtain a Medicaid waiver. There were actually very few waivers available, but if he could land one then he would be financially able to live in the community with supportive services.
It’s interesting how it seems we are given more strength and resolve when we’re acting on behalf of others.
Thanks to the help and guidance of the citizen advocacy coordinator and members of Robin’s Circle of Support, I was able to advocate for him and make his needs known to the Regional Board with much persistence and perseverance. Amazingly enough, the Board responded by granting Robin a waiver. This allowed him to return to Georgia and live in a home in the community--not in an institution-- and to be close to his family. It also enabled him to become better integrated into community life.
Robin is now 28 and I have no idea what he thinks of me, but when I visit him, he always holds out his hand and is ready to go. We do things we enjoy and he keeps helping me to be more present in the moment, to see things through his eyes and to enjoy what’s around us. I’m touched by his gentleness and his bursts of pure joy and my life is fuller with Robin in it.
Laurie Findlay
Citizen Advocate
Fred and Charles were introduced to each other 23 years ago and have become fast friends. The years have brought many changes for each of these gentlemen. Fred has moved from a nursing home to his own apartment, attended college, and become a spokesman for disability issues, but always with Charles as his ally and friend. They have even had opportunities to publicly share their story and encourage others in their journeys. Charles and Fred spend time together weekly, often after Wednesday evening choir rehearsal. Fred has had many paid staff people through the years that come and go, but they could never compare to Charles’ loyal voluntary commitment.
Gifts of Love, Peace & Acceptance
I have been Kim’s citizen advocate for 12 years. I cannot imagine my life without her. When we met she was 6 ½ years old, but now she has grown from a sweet little girl into a delightful young lady!
We have been through a lot together. I’ve gone to court on her behalf which has resulted in her being able to stay with her loving family. I have been a participant in her Individual Education Plans, and have spent nights at the hospital, after her surgeries, to ensure that she had appropriate care.
Kim’s family appreciates my support. I help them to know what Kim’s rights are and encourage them to insist on having her rights met. Kim will be out of school in a couple of years, and we must be sure that she has the most integrated, safest, and fullest life possible.
We never would have met if it had not been for the introduction by the Citizen Advocacy coordinators of Atlanta. That office has been a source of encouragement and support through the years.
Without their support of our relationship, Kim and I would still be friends, but because of the support that I get from the Citizen Advocacy office, I have been challenged to think in a clear manner about how I can speak what she would have me speak on her behalf.
Because of our relationship, Kim is a part of my entire neighborhood. Her friends in the neighborhood (more than 50) now know how to carry on a conversation with someone who does not use words, a computer, or a micro board. When I met Kim her social life consisted only of her loving family coming to visit her. She is now a part of a worshipping community that asks where she is and how she is and sends hugs to her when she is not in attendance. In other words, because I was invited to become Kim's advocate, her life is happier, safer and much more enlivened than it would have been without our relationship. My life is much fuller, my family is emotionally attached to her, and the community is enjoying the gifts of love, peace and acceptance that Kim gives to each of us.
Marie Selby Citizen Advocate
After 27 years, Joe and Norris are still good buddies. Norris has stood by Joe through some very difficult times, and because of Norris’ proven loyalty to Joe, it is Norris that Joe calls before anyone else when he finds himself in need of support. Joe is confident that Norris will always “be there” for him. And it seems that most recently Joe has “been there” for Norris when Norris was recovering from major surgery. After all, what are friends for?
J
ohn was originally matched with Amos in 1981 and after Amos moved away his daughter Helen and son-in-law, Mark, stepped in to be John’s citizen advocates. John had become such an integral part of Amos’ family that the transition for Helen and Mark was just “natural.” Helen has become John’s Representative Payee and talks to him by telephone daily. Mark spends time with John weekly, and together they maintain the level of protection and concern for John that Amos committed to more than 27 years ago.
We look back over these relationships in awe of how people have grown together in the midst of life’s changes. Often in citizen advocacy relationships it is the “stick-to-itiveness” that incites change for a protégé. Sometimes, helping to provide a better future for a person is a long process, with many individual steps in between, and sometimes it is just waiting for the time to be right.
Our charge is to maintain the pioneering spirit that launched this work 30 years ago. It has been said that when an organization loses its spirit of pioneering and rests on its early work, its progress stops.
Because people with developmental disabilities are still the most universally devalued people in our culture we move forward aware more than ever of the pressing need for voluntary citizen participation. We continue to believe that ordinary citizens can and will, if asked, become citizen advocates and provide vigorous and powerful protection for their neighbors who have developmental disabilities.
From Exclusion to Inclusion
José is a handsome and captivating young man who enjoys watching soccer and dreams of one day becoming an engineer. Although José has received some school awards, as well as A’s and B’s on his report card he understands that a special education certificate will not prepare him for a college education. But, José really enjoys attending school because school has been the only opportunity for this social teenager to be involved with other children his age.
We introduced citizen advocate Hector to José with these things in mind. Hector immediately began to help José and his family address issues surrounding José’s getting a more inclusive education. José has received after school instruction to help with his math and has been placed in some typical classes.
But the biggest change for José is that Hector has introduced José to a new community of friends and family. This year for his 15th birthday José celebrated and shared a birthday cake with friends away from home, and is now an active member of a church youth group. José loves his new life and new relationships and Hector delights in seeing a young man who is eager to learn become the teacher and the giver. (José is pictured here [back row 3rd from right] with ihs advocate, Hector, to his left] their families and community of friends) v
