THE EPIDEMIC OF LONELINESS
Our ONWARD Campaign to raise $50,000 has begun! Thank you to those who have already given! We’ve raised over $10,000, and to keep this momentum going, one of our regular donors anonymously offered to match the next $10,000 raised, pushing us over the halfway mark! Click here to give.
THE EPIDEMIC OF LONELINESS
In May this year, Dr. Vivek Murthy, the U.S. Surgeon General, released an 85-page advisory announcing loneliness as a new public health epidemic in the United States. He states, “...we must prioritize building social connection the same way we have prioritized other critical public health issues such as tobacco, obesity, and substance use disorders."
For the last eight years, our talented core leadership at Do For One has improved upon the mission, facilitating 100+ matches and tackling the vital question many are struggling to find viable answers to – how do we bring isolated people into greater community life?
WHO IS MOST ISOLATED?
“... studies find the highest prevalence for loneliness and isolation among people with poor physical or mental health, disabilities, financial insecurity, those who live alone, single parents, as well as younger and older populations.”
the advisory, page 19
Each year, Do For One creates a multi-path strategy to recruit people directly as "Partners," each belonging to one or more of the above (underlined) categories, emphasizing those with disabilities with little to no family support living in isolating environments such as nursing homes, group homes, and shelters. Our staff will then recruit an Advocate who forms a freely chosen relationship with one isolated person, dedicated to addressing their needs and interests within a sustained, enduring relationship.
One Advocate put it this way, “I find that Do For One is an invitation into more of what Jesus was talking about (Matt 25:40) and doing it with others who have made similar commitments. With love.”
FROM VICIOUS TO VIRTUOUS CYCLES
More than the number of matches (although we do have specifically targeted numbers of new matches mapped out each year), one of the key factors we look for is the trajectory that each match sets for the isolated person over the long term — this is aligned with one of our guiding principles, a true north for us, which is bringing isolated people into greater community life.
“The factors that facilitate, or become barriers to, social connection can reinforce a virtuous or vicious cycle. Better social connection can lead to better health, whereas less social connection can lead to poorer health. However, each of these can be reinforcing. Being in poor health can become a barrier to engaging socially, reducing social opportunities and support and reinforcing a vicious cycle of poorer health and less connection.”
the advisory, page 21
Two Examples:
Here are two examples to demonstrate how this approach unfolds in practical terms.
Pennie, the Advocate, is the Director of a community center in Manhattan. She invites her Do For One "Partner," Ivy, to join her for events hosted weekly. Ivy has become a regular at a communal activity of listening to the Bible. Her knowledge of the bible enables Ivy to connect with others in the community. Pennie even threw a birthday party for Ivy with family and friends.
Jose was paired with Jeff and Telisa, a married couple. Joining their church, Jose reflects on his baptism experience: Jose said, “Jeff and his wife, Telisa, invited me to their church. I felt welcomed. I decided to get baptized there. Jeff was there; I trusted him. He told me that baptism is about being reborn. It’s like a birthday. I don’t feel depressed or anxious anymore. I’m sleeping better now. I feel like a new person.”
Your Support
We’ve raised over $10,000 of our $50,000 goal, and to keep this momentum going, one of our regular donors offered to match the next $10,000 raised, pushing us over the halfway mark!
Do For One NYC
455 Main Street #4H
New York, NY 10044
Thank you for your support!
ONWARD!!
Andrew
Spring 2023 Update: Widen The Circle
The damaging effects of social isolation are much less of a mystery today than before the COVID-19 pandemic. Virtually every sector of the healthcare system is talking about it.
The health risks are as much as smoking 15 cigarettes a day - causing despair, drug addiction, and even death. What’s more, is that our communities are missing out on the gifts each human life has to offer.
Conversely, there is more and more evidence of immense positive effects on social connection, especially across social classes – increased happiness, better health, more opportunities, and a longer life.
Those of us on staff at Do For One see the reality and the effects of loneliness every day; without programs like ours, devalued people, such as many people with disabilities, are likely to spend their whole life without one single unpaid friend.
Together, we are not only widening the circle by making more one-to-one freely-given matches between socially isolated people and those who enjoy a more socially included life but, just as importantly, we are thickening the circle in three distinct and interrelated ways:
Widen The Circle
Diversifying Our Network
By diversifying our network, we are not only reaching those with greater need, such as those living in nursing homes, those with more significant disabilities, and those living in extreme poverty. We are also enriching our collective wisdom for the work we do together.
Each quarter, our Relationship Support Committee evaluates our matchmaking efforts on the number of matches and the diversity of each relationship. Our evaluation tool allows us to assess the primary nature of each relationship we’ve made possible, which divides them into four categories; friendships, mentorships, problem-solvers, and advocates.
Here are some real-life examples found within the 75 relationships Do For One has made and now supports:
Friendships: Some Advocates and Partners attend musical concerts and sports games together.
Mentors: Some Advocates are walking alongside young adults with disabilities as they further their education, learn to live independently, and find work.
Problem Solvers: One Advocate delivers groceries and picks up medications while assisting her Partner in setting up appropriate home care services. Another Advocate helps a disabled immigrant find resources and fill out paperwork.
Advocates: One Advocate walked into the hospital and told a Social Worker more context about her Partner’s life and family to improve the care the hospital provided. Another Advocate made the appropriate phone calls with their Partner to speed up the Partner’s wheelchair repairs.
Of course, each relationship is unique and evolves, so our evaluation is also highly nuanced. This is illustrated in our March 2023 Newsletter.
Another story that illustrates this is Helen and Zella's road trip.
Helen, the Advocate who met Zella 5 years ago, recently said,
"Zella loves road trips but hasn't been able to go on as many with her mom passing. So for her birthday, we took a road trip! These moments together make me appreciate what I am able to offer and remind me that meaningful change can come from simple advocacy - using my ability to do 'ordinary' things for another who cannot so that we can share these things."
Helen (left) and Zella (right)
To steward this movement, we are excited to announce that we are hiring Benjamin Tien as a Program Coordinator focusing on our activity in Harlem. Ben has been a Core Leader and Advocate since 2019 and has a wealth of experience in working with underserved populations. In our Spring Campaign Video, Ben said,
“Do For One doesn’t just talk the talk but Do For One walks the walk. I can see how it’s super important to have (those values) embedded into your own lifestyle, and that’s part of my aspiration too. To have my life live more up to the values I care about.”
2. Investing In Leadership Development
By investing in leadership development, we are unleashing the many talents within Do For One’s current leadership, creating new leadership recruitment channels, and setting Do For One up for long-term sustainability and multiplication of leaders.
In 2023, we are rolling out a training intensive for our core leadership. This includes four half-day training sessions. In the years to come, this training will be offered to a wider audience for establishing co-creative groups between the traditional service systems and local faith-based (and other) communities.
We’ve held two of the four sessions so far.
In session #1, titled Laying the Foundation, we crafted a stance on the inherent worth of all human life. This view is rooted in the Judeo-Christian belief that all human life is created in the image of God. In contrast, we examined the opposing views that threaten human life, mainly devalued groups and individuals, such as people with disabilities. After looking broadly at some of the common life experiences of devalued people, we reflected on what we can do about it.
In session #2, titled Walking The Tightrope, we built the case that no matter how innovative the design and how much money gets poured into a service, paid human service workers cannot and should not provide the type of care that family, friends, and community members can.
Pictured above is our Leadership Training Session #1 held on February 25th 2023: From left to right: Gene, Ben, Maegan, Jesse, Nick, Richard, Andrew, Maria, Jane, Alexa
Deepening Community Roots
By deepening community roots in key neighborhoods (Harlem, Upper East, and West Side of Manhattan, Roosevelt Island, and Western Queens), we recognize that relationship-building across societal barriers takes more than just one organizational effort; it takes neighbors, families, faith communities, service agencies, and more to weave the new social fabric.
Our hope is that each person we serve through our program will experience more of the good things of life: to love and be loved, to be safe and secure, to have work and a sense of purpose, to have family or at least close friends, etc.
Each Do For One relationship builds a bridge that walks the Partner, the socially excluded one, across the land of client-based services to the land of citizenship – where they contribute to the social fabric, the workforce, and faith communities throughout New York City.
To accomplish this, even for one socially isolated person, it not only takes more than one person, but it also takes more than one organization. It takes all of us in each community to work together.
With gratitude,
Andrew, Founder & Director
4 Mile Fundraiser Run Across Roosevelt Island May 6th 2023
Thank you to our runners and supporters at Do For One’s Spring Fundraiser Run around the beautiful Roosevelt Island! What a privilege to do this work and to know such wonderful people!
A Caring Friendship
Creating a friendship as an autistic man is a real challenge. In this essay I am going to elaborate on what those challenges are so as to give you an idea of how hard it is for me to make friends.
First, because I am unable to speak, it causes potential friends to misunderstand me. A pal may see my behavior and make an assumption about what it means. Their assumptions are not always correct. Behavior does not always accurately account for the feeling that is behind it. Friends constantly interpret my behavior as they experience it. I would like to give you an example of the difficulty I experience in getting pals to understand my feelings.
I and two other friends were at my house. We were caring about getting some lunch. We had had pizza several times in the recent past. I dearly wanted to please my friends and to let them know how much I cared about them. Since I observed that they really liked pizza I agreed with them to buy pizza again. But I really did not care about getting pizza for lunch, only cared about pleasing my friends and wanting them to know that I cared about them. They took my behavior at face value, thinking I really wanted pizza as they did.
The problem is that each time I get attached to a friend I have to prove that I like them because I can’t tell them in words. Calling pals friends means that I have to be kind to them so that they will know I care. I am seeing that it doesn’t always work out that way. I care about being able to tell friends I like them when I am feeling it, but the inability to spontaneously talk, creates problems. I first have to get people to realize that I want to say something and then to facilitate my speaking it. My actions in getting them to know I care can then be misunderstood.
Secondly, the ability to establish and maintain a friendship is limited. The ability to let a person know I would like to be friends is difficult for me. I can’t go over to them and tell them I am interested in getting to know them. Approaching people is problematic. They may get scared and fear that I will hurt them. They cause me to feel that I am seen as a threat, a person to be suspicious about. I therefore must wait until I am in a caring situation before I can make friends. I lack the freedom to choose the person I wish to make friends with.
Even after I have established a relationship I am limited in the ability to maintain it. Because I can’t call my friend up on the phone and tell them I would like to be friends with them and plan for future get togethers.
As an example of the difficulty I am describing occurred when I was in elementary school and was interested in a friendship with a boy in my class. he did not know I was caring about a friendship with him. I began to be aggressive toward him to get his attention, but he just got back at me. I cared about him and he just called me a mean hostile person. My attempt at friendship turned into a hostile careless relationship.
A third challenge has to do with being seen as different than other people. This is a fact that I believe causes people to get scared of autistic individuals. This fear then allows them to dehumanize us and to create separate worlds for us to lie in. Defining us as inhuman becomes the cornerstone for deciding on beastly treatment strategies and also becomes the background against which pals learn of us.
Being seen as different then becomes a judgement about who we are as people and how we fit into a society. We are judged as inappropriate, indifferent to other people’s feelings, dangerous, strange, weird and incapable of adding to a society as a participating member. Seeing autistic people in this manner then allows for society to justify the need to protect both autistic and society at large from the fear that autistic people may harm themselves and/or others. Viewing autistic people as needing protection and the superior judgement of professionals they are seen as being unequal in relationship to others. They are not a partner in relationships.
How then can two unequal people have a real friendship? The unequal distribution of power creates problems for two people attempting to have a friendship because one of the pals becomes, by necessity, a caretaker to the other, putting one of the pals in a childlike position. This is problematic because that means that they are caring about each other not as man to man but as man to child. The unequal distribution of power can’t help but permeate the relationship and effect every aspect of it. Being pals with an autistic person means that an individual bears the responsibility to listen to the autistic person as a man not as a child and to face the fact that being autistic does not mean that one does not care about a pal as an adult but is caring about him/her as a peer, Both people must have a desire to be friends because they like each other not because one of the pair needs the other. Their friendship should be based on caring, not care-taking. Creating a friendship is like having the freedom to be a member of the world of relationships.
15 “get to know you” questions
Recently advocates have been asking, "How can I help my partner find a job?" or "How can I help my partner become a member of church and not just our 'special' guest?" In the last newsletter I gave you a list of questions for you to answer as a guide to deepening relationships across societal barriers. Here, I'd like to offer a list of questions your partner can answer for you.
How will you understand your role as an advocate?
Many people with disabilities are served based on one thing: their disability. This leaves many people feeling like their whole life is defined by what’s wrong with them. It’s important to realize that people with disabilities are all individuals, each with their own unique circumstances and should be defined more by who they are and their individual story than by the fact that they have a disability. People’s needs and interests will differ widely and therefore we must be prepared to respond accordingly; this is why freely-given relationships,motivated by love, is at the core of how we respond to people’s need for support.
As you earn trust with your partner, their families, and others formally involved, the following questions (an adaptation from a collection of citizen advocacy papers, thank you AJ Hildebrand!) can provide clarity and organization for understanding your partner better and addressing their needs and interests.
RELATIONSHIPS:
• What family members are actively involved in their life?
• Where has your partner lived and with whom?
• Who are their friends?
WORK AND EDUCATION:
• What has their work and education experience been?
• What impact does their economic situation have on their life?
• What are this person’s greatest gifts, skills, and attributes? Is this person aware that you and others see them this way?
• What set of social roles and personal attributes (e.g. family member, employee, known as humorous) is this person recognized for in their community? What roles might they potentially acquire or make known to a broader audience?
ASPIRATIONS:
• What do they look forward to in their future?
• What values and beliefs does this person draw upon to make decisions?
• What does the person enjoy doing?
• What does the person dislike doing?
COMMUNITY:
• What community associations (e.g., church groups, activity clubs, etc.) is this person a part of separate from formal human services?
• What opportunities are available to increase opportunity for community involvement (e.g. volunteering rather than just attending a church, going to a recreation center closer to home rather than across the city, going to a more age appropriate sports league rather than one with children, etc.)?
SERVICES AND AGENCIES:
• What human service professionals are most helpful to this person and how would they describe the person’s needs?
• What challenges does the person have relating to their disability, and what supports are in place to address those challenges?
Knowing a person’s experiences – their joys, sorrows, and heart’s desires – is necessary to developing authentic relationships. You can identify with them as they relate to you their inner wishes.
Yours,
Andrew
Circles of Support
Judith Snow, and her story, inspired the concept Circles of Support. Judith, born with quadriplegia was a passionate intellectual, and a teacher at York University. At age 28 Judith had exhausted every attendant care living option available in Canada. She found herself living in a geriatric ward of West Park Hospital. Her good friends from University, Marsha Forest and Jack Pearpoint, were shocked when they saw first hand the living conditions she was in and at such a young age. Upon learning of her poor living conditions and inadequate support, Marsha and Jack formed a group and circled around Judith. They formed a team in which they fought to get Judith out of the nursing home and into her own home with personal assistance. Judith dubbed the group the “Joshua Committee,” because together they ‘blew down the walls’ (Joshua 6:20).
The work of the Joshua Committee in joining with Judith demonstrates the way in which people can work together to be a life-changing force in each other's lives. Author and disability advocate, Bob Perske, was inspired by the unusual work of the Joshua Committee and conceptualized the idea of “Circles of Support.”
A Circle of Support is a group that forms in order to help a person with a disability to achieve goals or to lend a hand when needed. Prior to developing your own Circle of Support, it can be helpful to consider the current relationships in your partner’s life. There are four basic relationship “circles” to consider:
The Circle of Intimacy is made up of the people we love. These are people we feel safe with and are able to be vulnerable with. This circle usually includes family members and very close friends.
The Circle of Friendship includes the people who we may call up to grab coffee, see a movie with, or join in a shared interest with. We consider these people good friends, but they are not most dear to us.
The Circle of Participation is made up of acquaintances from the various spheres in which we participate, including colleagues at work and school, members of a sporting group, or fellow volunteers at church. These people are not close enough to be called friends, but as time goes on they could move to one of the first two circles.
The Circle of Exchange is comprised of the people who are paid to be in our lives. Some examples include doctors, teachers, social workers, barbers, etc. These relationships are purely transactional.
Many people with disabilities have relatively few people in their lives that fall into Circles 2 and 3. In most cases Circle 4 far outweighs the other circles; the majority of people are paid to be in their lives. There are many reasons for this, including the person’s lack of opportunity for work, access to social or religious groups, or connections with people who share their interests. Therefore there is a lack of acquaintances (Circle 3) and opportunities for friendships (Circle 2). This incomplete network of relationships can put an overwhelming strain on family (Circle 1). Sadly, it is far too common that the person is in Circle 1 alone—leaving only paid workers in their life to support them. This is why your relationship plays such an important role in your partner’s life.
Creating a Circle of Support can help relieve some of the stress of the ‘faithful few’ in Circle 1, and can truly help your partner flourish. This is done by identifying people in your partner’s life, brainstorming together about how to mobilize resources to meet specific or potential needs, and then acting upon those ideas when appropriate. It can be transformative, yet it takes intentionality and organization to form a fully realized and effective Circle of Support.
Ideas to begin forming a Circle of Support:
Meet with your partner and write down where each person in his or her life fits into the four relationship circles. Keep these people’s contact information in one place. Over time, you might meet people you didn’t realize were actually present in their life., in one of the circles.
Assess areas of need in your partner’s life and how various people in their life could support or advocate for them in that need.
Plan a “circle meeting” in which you and your partner bring together the important people in their life to organize, reflect, and make decisions this person’s life and future possibilities.
Your partner is integral mapping out their Circle of Support. Make sure to include them in all steps of this process! To every extent possible, you want to empower them to make decisions and utilize these resources.
When neighbors become family
Do For One promotes stronger communities and richer lives by bringing people excluded from freely given support into healthy and lasting relationships. We selectively match one person with disabilities (Partner) with another person who enjoys a more included life (Advocate). Friendship, spokesman ship, social support, and social change can emerge when people's gifts and concerns are brought into the center of community life.
(names changed for privacy)
Cherry is a lifelong resident of Queens who formerly worked in construction. As an all around lover-of-people, her role as friend and advocate for a mother and daughter duo, Janice and Chloe was second nature.
Janice, mother to adult daughter Chloe, is Chloe’s full-time caretaker. They met Cherry at a Do For One gathering when Cherry, a natural party hostess, asked the two if they needed anything; Janice politely declined but Chloe shocked her mother with a prompt drink order. The three mingled the rest of the evening and have been friends since. Cherry says she feels like they are family. She visits the two to hang out, gives them rides around town to run errands, and helps them clean. When the busyness of life inevitably catches up to them, they will simply call and talk on the phone.
Cherry’s experience with her own family has greatly influenced her support of Janice and Chloe. Cherry has an aunt with Down’s Syndrome who, similar to Chloe, was fully dependent on her own mother. Cherry’s family was faced with many decisions when her aunt’s mother passed away, and worse, her aunt was faced with being without her mother and faced with drastically new circumstances for the first time in her life. As a loving and honorary member of the Janice and Chloe’s family, Cherry has been able to share the mental and emotional burden of planning for Chloe’s future.
With the proper factors in place, it is truly beautiful when a family can care for their loved ones. The advantages of being supported by relatives are innumerable. However, it is often difficult to plan for the painful transitions in family dynamics, such as the passing of a parent or primary caretaker. These preparations, however, can be especially critical for the individuals receiving care. New faces, new environments, and disrupted routines are tremendously stressful and the trauma can be compounded if they don’t fully understand why the changes are taking place. Planning for these changes not only brings peace of mind to the families of a disabled loved one, but it means their loved one has a better chance of thriving when the time for these changes arises.
As seen with Cherry, Janice, and Chloe, Partners are privileged in some friendships to be treated as part of the family. When asked what she feels about the friendship, Cherry immediately replied, “Valued.” Janice calls to simply say hello and with great sincerity checks in on Cherry’s wellbeing. The sweetness of their deep, mutual appreciation was evident, but also highlighted a common observation for Advocates: Partners are often chronically undervalued in their daily lives. Cherry described a conversation with Janice after a trip to the store, “She always apologizes a million times...says ‘you’re busy and I apologize for bothering you’. They feel like they’re not important; after so many years of nobody caring they don’t believe they matter. I just took her shopping. It was no bother.”
The notion that a person is a bother for needing support is tragic. Frequent apologizing is a symptom of being treated as though their needs are less important than others. Many Partners indicate the deep appreciation they feel from the support they receive from their Advocate. Cherry passionately described the need for “webs of support” see the Circles of Support post for this community of individuals, essentially more people loving and serving more people.
And she is right. It takes individuals intentionally being community for our friends with disabilities. Perfection is not required, only honesty, love, and committing to showing up. Slowly, with intentional love, education, and commitment, the paradigm within our culture can change to be more inclusive, supportive, and just.
Kayli Capshaw
P.S. The story continues with Cherry, Chloe, and Janice. Cherry is now advocating for supportive housing for them and recently became their point of contact for emergencies.
Our Relationship with Time & Identity
Do For One is a relationship-building program that brings isolated people into greater community life. We selectively match one person with developmental disabilities (‘partner’) with another person who enjoys a more socially included life (‘advocate’).
We then support voluntary advocates as they strive to understand, represent, and respond to the interests of their partner.
As Do For One relationships look forward to the fall season, crowded schedules and competing agendas is likely to be a challenge. Ruth Haley Barton asks, “To what extent do you feel you are arranging your life around what you say you want?”
There is often a disconnect between what we truly want and what we actually end up doing. We treat life like an amusement park where bragging rights go to the one who rides the tallest, fastest, and scariest ride. We strap ourselves in and let the tracks (a.k.a. our calendars) dictate where we go.
Why does this happen? Our sense of self-worth is commonly wrapped up in external things that drive our decisions. Henri Nouwen breaks this down into three lies we tell ourselves about our identity: I am what I have, I am what I do, and I am what other people say or think of me. For example, you make ‘X’ decision because the result will be having more money, doing more important or prestigious work, and people saying flattering things about you.
Henri Nouwen was a catholic priest and writer who taught at Notre Dame, Yale, and Harvard. After a lifetime of seeking, he finally found his home in Canada, as pastor of L'Arche Daybreak where people with developmental disabilities and their assistants live together in community. Henri Nouwen writes, “People with handicaps teach me that being is more important than doing, the heart is more important than the mind, and caring together is better than caring alone.”
I have found that many of my close friends with developmental disabilities don’t care all that much about what I have, what I do, or how popular I might be among peers. What they care about most is that my love for them is authentic and that I’m not too rushed to spend time with them.
Perhaps this is because people with developmental disabilities are often left with wasted time and potential due to a lack of support from those who are outside of the services system. Ben Drew, Founder of Open Future Learning posted this chart which illustrates the status of 236 people with intellectual disabilities who were visited at 8:00PM on Thursdays and Fridays. The homes were all in the community. They visited people who had lived at home, supported living, group homes, and nursing homes.
The results are revealing and very sad.
In this chart, we see the proportions of people’s status who have little to no opportunity to share their talent, gifts, wisdom, and friendship with.
Do For One advocates respond to this time-wasting (a.k.a. life-wasting) issue by assisting their partners with job exploration or volunteer opportunities, developing a skill, finding a platform for a skill (e.g. poetry, music) or simply enjoying a particular hobby they both love.
As Mitchell Peters of Australia Citizen Advocacy says, “… advocates continue to cultivate the garden of potential of their (‘partners’). And in doing so, citizen advocates are demonstrating it is time for killing off the assumption that perpetually killing time is an acceptable fate for people with disabilities.”
Our response?
Being an advocate does not mean you’re being sent away to join Mother Theresa’s Missionaries of Charity! Being an advocate does not mean you’re adding some thing to your schedule. Being an advocate means that you are inviting someone into your life. Being an advocate means that someone is inviting you into their life as well.
To make your commitment feel natural; consider your personality and schedule. Do you jog? Do you frequent museums? Are you good with budgeting or general life management? You might be surprised at how these ordinary skills and interests could be life-changing moments when you invite your partner into what you’d normally be doing anyway (or at least things you wish to be doing). Here are some examples we’ve seen advocates and partners do together.
Go to the gym
Go grocery shopping
Attend church
Budget finances
Watch a movie
Attend a wedding
Pray or talk on the phone
Walk the dog
Make homemade bread
Meet on lunch break for work
As we deepen our commitments, it is quite possible that what we truly want in life will become less and less at odds with what we actually end up doing.
Yours,
Andrew
A Minister for Loneliness
"Researchers have found that loneliness takes a physical toll, and is as closely linked to early mortality as smoking up to 15 cigarettes a day or consuming more than six alcoholic drinks a day. Loneliness is even worse for longevity than being obese or physically inactive."
This can be found in a recent Wall Street Journal article about the health effects of loneliness. The U.K. has addressed this issue by appointing its first "Minister for Loneliness."
Behind the stage of our community gatherings is the quiet and unseen work of our advocates. Among those are the relationships formed with people living in long-term care facilities. Our friend Kayli Capshaw, spent some time with several advocates and shares the story of Ralph and Luis:
Luis is a native New Yorker living in Queens; he works at an airport handling cargo shipments and covers the overnight shift. Luis and Ralph shared a 3 year friendship before Ralph’s death. The love Luis had for Ralph was clear in his candor describing their initial encounter: “I went in thinking I was going to save the world…but when we first met, I felt like they gave me the hardest case!”
Ralph, formerly living on the streets was placed in a rehab facility in his early 40s. Like Ralph, those facing poverty, lack of family, and significant mental or physical impairment can lead to institutionalization, even at surprisingly young ages; in fact, some have spent their whole life in institutions. At this point in Ralph’s life, he was regularly and heavily sedated with psych meds. He would spend the remainder of his life living in a hospital bed.
Much to Luis’s initial consternation, Ralph was NOT emotive and often didn’t have much to say when Luis came to visit, “Honestly, he wouldn’t even talk to me at first.” Heeding sage guidance from his father, Luis continued to visit regularly, despite the less-than-warm welcome. The lack of communication left Luis with a host of insecurities, including whether the friendship would work out. There was a period of time when Ralph refused to come out of his room and other bumps, but Luis stayed the course.
Imagine this is your life. From your bed to a dayroom, then back to your bed again. Your dayroom time, in the stead of vocation, education, recreation, consists of television playing in the background, eating hospital-like food, and perhaps once in awhile a volunteer group will serenade you with Christmas carols. This is when you’d realize the holidays have approached once again. Day after day it’s the same story. When you have no family, and nothing to break up the monotony, life can be a blur. Luis came with positive intentions, but they seemed fruitless; what was going to turn Luis and Ralph’s relationship around?
Persistence and a small stroke of genius proved to be a game changer: Dominos. Luis brought along a game of dominoes for something to do and discuss—which alleviated the pressure of finding things to talk about. Luis joked, “We were both mellow—and NOT conversationalists!” Not all partners necessarily express their sentiments and emotions in ways we may expect. Luis was willing to sit with the discomfort of the unknown and through his consistency and humility, found unexpected common ground with Ralph.
Ralph and Luis playing Dominos in community room.
Over time, Ralph not only agreed to play (he, in true Ralph fashion, initially refused), but became great at dominos. They would play together regularly and eventually with others, as well.
Accepting the fits and starts inherent to getting to building new relationships, persistence can bring reward; even the smallest things can be a game changer. And although there is a connection of joy and appreciation shared, the reality, is that the closer you get, the more you know about a person’s situation, the harder it becomes to feel like you’re making a difference.
His goal was to get out of this facility. He’d say he wanted to leave, and though I wanted to tell him, ‘Go be a free bird!’ the reality was that he would be on the streets. I wanted to get him out of there, but I couldn’t do anything.” Though we want to swoop in with a cape, the greatest thing we can offer our friends is consistent, reliable relationship; many people with disabilities have few meaningful connections to draw from and spend much of their time isolated and lonely.
Maintaining hope and enthusiasm can be difficult when there is seemingly little to no change in a person’s life, especially when you begin to deeply care, and identify with the person. Like a well-tended garden, the fruit of your labor doesn’t come overnight, but the work is not in vain. The process is just as important as the end result.
When it comes to relationships, the story never really ends, it simply shifts and moves in stages. For Ralph and Luis, there is an ending in Ralph’s death, and the life that comes from the memory and book-end reflections continue to inspire, Luis reflects:
“There was a gaining of trust; he socialized more--more conversation, respect--appreciation between the both of us and being together. I felt like it brought me back to the reality of what life is really all about. I consider myself a no nonsense kind of guy and I feel like he was the same way; you really don’t see that kind of relationship in this type of society. It made me feel comfortable. With him, people, with myself. Learning what it truly means to serve someone--it doesn’t have to be that you have to raise them up--you can always go back to the smallest thing. It was a simple relationship, and even out of that simplicity a lot was being transmitted. The trust, it took time to build and initially was hard to build. To describe him--mellow, hard headed, genuine--that’s what I appreciated the most, the genuineness of the relationship. My expectations fell; I thought I was gonna change the world, but just me showing up was what was needed. It showed me the importance of relationship and fellowship and humans...we all just want to be loved.” - Luis
Similar to other Advocates, Luis wished he could change Frank’s circumstances or make a larger impact, but when he would ask Ralph if he needed anything, Ralph would simply shake his head and say, “I just need visits.”
Being a Good Listener
The following is an updated version and reposted. Originally created for Guiding Principles for Advocates, download the latest version here
Good listening is key to any great relationship. When the person you are in a relationship with is constantly misunderstood by others, good listening is vital. People with developmental disabilities often lose personal agency over their lives when people in more powerful social positions make assumptions about what they want rather than listening to what they are really trying to communicate. To be an effective advocate and friend, it is critical to be a good listener.
Here are a few general guidelines for good listening and communication. Many of these guidelines are also helpful for those who cannot or do not choose to talk.
1. Words that are spoken
It is common that we cannot follow when people talk because we already have our own line of thought preoccupying our mind. Instead, we must quiet our minds so that we can hear and take in what is being said.
Listen attentively. Be patient and wait for the person to finish, rather than correcting or speaking for the person. Try not to interrupt.
Speak directly to the person you are listening to, rather than around them. Avoid communicating through a family member or service worker who may be present.
Don't be afraid to ask questions. Never pretend to understand when you are having difficulty doing so. Instead, repeat what you have understood and allow the person to respond to clarify and finish.
2. Words held back
It's not only important to ask questions to simply clarify what was said, but to ask questions that sparks curiosity and insight. This lets the person know that you not only hear the words they're saying but that you want to explore more of the topic with them. This is just what makes for a good conversation!
As long as the person being listened to feels supported and respected, don’t be afraid to challenge or disagree; that's also what makes good conversation and will enrich your relationship.
The better a listener you are, the more likely the person being listened to will feel safe with you and open up more, and be more open to your suggestions.
3. Words unuttered but lie in the heart
Be okay with silence and the awkward feelings it might provoke. Allowing time and space to connect, and relate emotionally might bring out a gesture, a word, or even intuition on a given situation that you will miss if you are busy filling in the space to avoid uncomfortable feelings. Patience is key.
Talking is only one form of communication, other forms include:
Gestures
Emotions and moods
Behaviors
Facial expressions
Signs, signing, signals
Sounds
Reading and writing
Use of pictures, drawings, and other visual aids.
(Joe Osburn & Jo Massereli)
Also, your relationship should be mutual and open. Therefore give your partner insight into your life as well. As in any healthy relationship, it should not be one-sided or condescending. This focus may help your partner feel more comfortable opening up themselves. When being vulnerable, it’s important to consider appropriate emotional boundaries, however.
The Citizen Advocacy Story
Do For One was adapted from a well-established practice called Citizen Advocacy. In 1966, an academic researcher named Dr. Wolf Wolfensberger attended a national conference on protective services for the handicapped. It was there he became aware of how impersonal, rigid and limited the current system of human services was. One audience member asked, "What happens to my handicapped child when I'm gone?"
Moved by these needs, Dr. Wolfensberger conceived of Citizen Advocacy, a community based human services organization, and establishing the first office in Lincoln, Nebraska in 1970. In years since, offices have been created in Canada, Australia, New Zealand and elsewhere in the United States. The largest programs exist in the states of Nebraska and Georgia.
When Citizen Advocacy was created, there already a few types of advocacy being implemented: guardianship, adoptive parenting, property protection, and trusts. But there were problems. There were too many clients for too few workers, which forced staff to spend more time pleasing their boss than serving their clients. There were also conflicts of interests, with one agency taking on multiple, yet conflicting, responsibilities. Plans made for individuals were rarely implemented, often to due to high turnover rates among staff. And clients began to feel despondent, as their emotional needs were unattended.
Citizen Advocacy has a rich history, yet many programs that once solved these problems are dying out. These programs rely on a commitment from communities rather than formal human service structures. The focus now is on the future. When ordinary citizens take personal responsibility, the benefit is for everyone.
Am I really lovable like that?
(Slightly revised version from an original post on March 2017)
Do For One is a relationship-building program that brings isolated people into greater community life. We selectively match one person with developmental disabilities (‘partner’) with another person who enjoys a more socially included life (‘advocate’).
As a matchmaker and supporter of matches, I have been reflecting on the fears that people with disabilities are facing when entering into relationships. While I’ve been somewhat prepared for the fears that advocates have in responding to someone in need, what I was less prepared for is the fear that people with disabilities have with this idea of relating to someone who is both non-staff and non-disabled.
Recently, I was at a support group which consisted of about 35 adults with intellectual disabilities. In clarifying the type of service Do For One offers, one staff member asked the group, “How many of you have ever had an unpaid and non-disabled friend?” Once it was clarified that she was not asking about friendly paid staff or others who have a disability receiving the same services, not a single person raised their hand.
I’m reminded that while advocates are fearful of the unknown when entering the relationship, people with disabilities might also fear the unknown when entering the relationship with someone who is both non-staff and non-disabled. There seems to be an underlying question coming from many wounded people, “Am I really lovable like that?”
Let us not be discouraged! After all, the most precious gifts in life are often in the most difficult things. Let us look at three key concepts that help guide us through these social dynamics and discover the gifts found in our relationships between people with and without disabilities.
First, people with disabilities are all individuals with totally different circumstances and should be defined more by who they are and their individual story than by the fact that they have a disability. People’s needs and interests will differ widely and therefore we must be prepared to respond accordingly; this is why relationship is at the center of how we respond to people’s need for support. Theology Professor and Disability Advocate, Nancy Eiesland helped me to understand that people with disabilities don’t identify with each other because of their similarities in bodily or mental function, but they identify with each other because of the way that society at large treats them, namely, with negative stigma and exclusion.
People with disabilities are wounded from oppressive circumstances and need people who are in good standing within a community (and not just in human services) to be bridge builders to community life. Unique gifts and talents that are brought to the heart of community will lift the social status of an individual. Positive representation through friendship works powerfully when working to reverse negative stigma and the downward spiral of further wounding experiences.
Secondly, wounded people will expect relationships to fail. They may not have the skills to deepen the relationship or to maintain a hopeful outlook as the relationship ebbs and flows. At times the relationship may not be fully reciprocal and a wounded person will need someone to be understand that they are battling many discouraging thoughts of feeling unlovable. This is when the advocate needs to take the initiative to guide the relationship along.
It is important to accept that wounded people will need support for the rest of their life and there is no “one-time fix-all” solution. This does not mean that advocates are to address every area of support. What I hope you can see is that the many little, but persistent responses to the person over the long run will reverse their expectations of rejection. This kind of loyalty helps them find the road to healing.
Lastly, it is vital to believe that such relationships are possible! After all, the dreams and desires of people with and without disabilities are basically the same. We all have basic desires in our lives for love, security, and a place to belong. Most of these needs can only be met through freely given and personal relationships. Relationships between people with and without disabilities are even more likely to happen when people are invited into them by others who’ve done it themselves and when people are asked to do something for another person that they already feel equipped for and are passionate about.
These relationships can come at a cost, but a highly worthy one. We are standing with people who are always at risk of being marginalized, so we ourselves, to some degree, become marginalized too. Relationships across these barriers are transformative, developing courage, patience, humor, and forgiveness in ways that would have never otherwise been possible. It is here we find that we too are needy people asking the same question about ourselves: “Am I really lovable like that?” It is here we find Life’s most profound Passions and Joy. It is here we find what Christian tradition has called the “Hidden Christ.”
Inspired by Jesus’ words, “Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me,” Do For One invites us to treasure an opportunity to align ourselves with those who are considered least important in our society, not only because they’ve become our friend, but because we realize that such an opportunity is sacred.
Andrew
Make the Big City Smaller
Dear Friends and Advocates,
Most of you are in New York City. Many of you are advocates to one vulnerable person with disabilities. Those of you who are not, I know you are supporters of Do For One so I hope you'll find this relevant and helpful. As the coronavirus virus has spread and the response of the city intensified I want to offer some guiding principles rooted in the sacred words of the Old and New Testament Bible. My hope is to help alleviate fear and strengthen our responses.
Fear and anxiety is provoked because so much of this is out of our control. See this article on taking care of your mental health. Submitting this reality to prayer will help reduce anxiety. Pray for those affected by the virus and for New York City Officials who are responding to the issue. The Lord is near to all who call on him, to all who call on him in truth. Psalm 145: 18
Let's remember our responsibility as citizens of New York. It can feel overwhelming to think about what we could possibly do. The idea is to make the big city smaller. We can't do everything but we can do something. First of all, proactive containment has been shown to be the best way to protect a community. Younger demographics are reportedly less likely to be as severely affected by this virus. However, as you know we live in a densely populated city where many of our neighbors are much more vulnerable and at risk.
As we prepare and make decisions, make the big problem smaller by assessing your priorities:
Care for those in your own household. Your spouse, your children, other relatives, significant others, and yes, your roommates! Anyone who does not provide for their relatives, and especially for their own household, has denied the faith and is worse than an unbeliever. 1 Timothy 5:8
Care for those most vulnerable within your reach. Your (Do For One) partner, someone in your local faith community, or someone in your neighborhood. If anyone is poor among your fellow Israelites in any of the towns of the land the LORD your God is giving you, do not be hardhearted or tightfisted toward them. Deuteronomy 15:7
Don't assume your partner or neighbor knows what is going on and what to do. For example, some have limited access to the internet
Be mindful of those who live alone. Visit them (with caution / unless you're sick!) or call them! Inform them and help them make any necessary preparations
Be especially mindful of those higher at risk that make them more vulnerable
Act now
Do what calms you and makes you feel safe. Take care of your and others' mental health
Laugh, cry, and be especially loving to those most dear to you
Use the following points as a guide for any visit or small gathering, including one to one visits. (thank you, Andy Crouch)
No one present is sick or has any reason to think they have been exposed to SARS-CoV-2 (coronavirus)
Shared surfaces are disinfected before and after the meeting
Everyone washes their hands thoroughly (more than 20 seconds) upon arrival and upon returning to their home
Food and drink are served individually
As much distance as possible is maintained between members of different households and their belongings
Regulations and preventive measures will change so stay updated by following state and city officials. Keep the vulnerable within your reach updated. Avoid hysteria (especially to be found on Social Media) and pay attention to updates from trustworthy resources such as the CDC website.
Call me if you have any specific questions or concerns. (917) 202-8636
Yours,
Andrew
To Our Dear Beloved Community
Dear Beloved Community,
How we long to be with you! What else can we do as a community but consider the value we bring to each other. It is painful to say that we will be canceling our gatherings for the time being. It is simply best for everyone right now. We have our eye on the COVID-19 situation. As things develop we will keep you updated on future events.
In a world where more value and concern is expressed toward people with wealth, health, and youth, we proudly stand in solidarity with you. We recognize that for many of you this is a scary time and only hope that our standing with you in our hearts and through our prayers can be of some comfort.
“Do not reach out your hands. Reach out your heart. Reach out your words. Reach out all the tendrils of compassion that move, invisibly, where we cannot touch. " -Lynn Ungar
Here are some specific and immediate prayer needs that have surfaced:
Our friends who live in Coler Hospital are in lockdown mode (no family, no volunteers) and soon to be overcrowded with Bellevue Patients. Soon to be a place for COVID-19 testing as well. Residents and Staff are very nervous. Pray for peace and protection.
Pray for protection over the health and well-being of parents caring for their adult children
Pray for our partners who are living alone with health issues and are especially vulnerable during this time
All that being said, it has been of tremendous encouragement to hear evidence that though events are cancelled, relationships are not. In many ways, what we are experiencing right now highlights the potential and strength of Do For One.
Here are some examples of what Do For One advocates are doing for their partners:
getting groceries and essentials like medicine (dropping them off safely at the door)
texting & calling
individual get togethers
ongoing availability for help & proactively following-up
writing letters
contingency plans for emergencies
washing hands!
Yours,
Do For One Leadership
Share
Stitch a New Garment
“Now the earth was formless and empty, darkness was over the surface of the deep, and the Spirit of God was hovering over the waters.”
- Gen. 1:2
Dear Advocates and Community Friends,
Gen. 1:2 almost mirrors the moment we are in. The darkness, the emptiness, the Spirit of God hovering over the waters. The major difference is that our world is no longer without form. It’s form is frozen in time. All of us quarantined away in our corners of the world highlights the formations we’ve created to separate the valued from the devalued, the nondisabled from the disabled.
Your relationships represent something far more significant than you can fully know. It’s an unlikely alliance that offers a signpost of hope for what could have been and what could be. I know this is a disorienting time. My purpose in writing you is to offer a bird’s eye view of how your daily acts of kindness fits into the bigger picture. My hope is for you to see the significance of what you stand for and what you stand against as you stand with your partner and with many of our friends with disabilities.
As many of you know, right here on Roosevelt Island, COVID-19 patients have been transferred to Coler Hospital, where some of your partners live. Somewhere around 500 people call Coler Hospital their home. Some since childhood. The city dubbed their home as an "empty hospital" for COVID-19 patients. Long term residents and new patients who’ve tested positive are placed in the same rooms as those without the virus. Limited medical supplies, overworked staff, and crowded spaces are among the factors that make for an extremely scary situation. Staff are afraid to say anything for fear of getting fired. There have been numerous deaths at Coler and no one can say who or how many. We won’t really know the full truth until this is all over. If then.
A New York Times article, reports of fears that hospitals in New York will remove ventilators from people who require them long-term, such as those who have certain spinal cord injuries, having their ventilators reassigned under the protocol if they were admitted to hospitals during the crisis. Again, we won’t really know until this is over. If then.
This is a side to the larger story of the pandemic you don’t hear much about. Stories such as these expose utilitarianism ethics that pervade our minds and our service structures. The reality is that we still live in a world that measures human worth based on external factors such as someone’s level of independence, intelligence, productivity, and perceived ability to contribute to society. In an interview on MSNBC, Peter Berns, the Executive Director of the ARC, reports the heartbreaking reality that all the careful planning of parents and people with disabilities to be included in the community “has been shredded.” Three points of concern he highlighted was isolation, fear, and medical rationing.
Your being an advocate is a genuine way of acting upon the belief that all human life is sacred. There are a million and one ways to serve the city right now. Given to fickleness, we all can be easily swayed by other, sometimes more compelling opportunities when the going gets tough. Now is a time when loyalty is one of the greatest gifts we can offer. It is a principle of unfailing love. As you think about your priorities and make decisions on how to serve our city, remember to reach out your heart, to call, to listen, to encourage, to laugh, to cry, to suffer with... All of these acts will speak to them and those around them that they are valued and not forgotten.
What can be done?
If your partner lives in Coler Hospital, consider joining forces with local Roosevelt Island advocacy groups by emailing friendsofcoler@gmail.com or by following OPEN DOORS on instagram. They are doing great work advocating for residents and staff to obtain medical supplies and getting their stories heard. All of us should consider donating money to the movement which goes directly toward Coler Hospital's evolving medical supply needs. Other opportunities include sending food to Coler staff to encourage them, making it easier for them to do good work.
Encourage the staff and residents of your partner’s group home by writing them thank you letters, ordering pizza for residents and staff (as some advocates are doing), or by sending art supplies (as my wife is doing) or by going on a physically distant walk with your lonely neighbor (as I have been doing). We host bi-weekly prayer gatherings through the Psalms so join us and invite residents and staff to join if they are able. All these little acts of kindness makes their job easier and more rewarding, which in turn benefits our vulnerable friends. Stay informed, this article was just written up about group homes being hit with the virus, jobs lost, this article features Do For One, by the way!
Finally, let’s keep getting better at what we’re already doing! The practical support to families. The friendship you offer by talking daily with your partner who lives alone. Supporting those living in poverty who’ve needed financial support to keep their phones working, their kitchen stocked, and to stay entertained. If you have additional ideas, we'd love to know what you're doing so we can learn from you. If you have questions about anything I've mentioned here please let me know.
New patterns are emerging from the old. The earth is not formless but it’s forms are exposed, shaken and movable. Here lies the opportunity! As Sonya Renee Taylor says, “we are being given the opportunity to stitch a new garment.”
Carry on!
Yours,
Andrew
“No one sews a patch of unshrunk cloth on an old garment, for the patch will pull away from the garment, making the tear worse. Neither do people pour new wine into old wineskins. If they do, the skins will burst; the wine will run out and the wineskins will be ruined. No, they pour new wine into new wineskins, and both are preserved."
- Jesus
The Creative Dedicated Minority
You may not have been an essential worker in the fight against COVID-19” says pastor Kenneth Hart during a peaceful protest in Harlem, “but you are an essential worker in the fight against COVID-1619.” He goes on to say that in 1619 the first Africans were brought to Jamestown, Virginia on a slave ship.
Hello Friends,
Today we celebrate the ending of the last remaining enslaved African Americans in the United States. It is also a day of mourning as we remember our country's history and for those who did not live to see June 19th 1865.
Unfortunately, we are still experiencing wave after wave of grief and heartache. COVID-19 exposed the often hidden problems of institutional racism as we learn that black Americans are dying from the virus three times the rate of white people. It is no wonder why the brutal murders of George Floyd, Breonna Taylor, Ahmaud Arbery, Rayshard Brooks, and many other Black Americans have sparked a global uprising against racial injustice.
“Slavery didn’t end in 1865; it evolved" Bryan Stevenson said in a recent interview in the New Yorker. “The great evil of American slavery wasn’t the involuntary servitude; it was the fiction that black people aren’t as good as white people, and aren’t the equals of white people, and are less evolved, less human, less capable, less worthy, less deserving than white people.”
Those who are black and disabled face even greater devaluation. One study finds that more than half of black and disabled Americans will be arrested by their late 20s. And a third to half of all Americans killed by police have a disability. So we acknowledge and grieve over the recent deaths of black and disabled Americans Sandra Bland, Eric Garner, Freddie Gray, Tanisha Anderson, Deborah Danner, Ezell Ford, Alfred Olango and Keith Lamont Scott.
Listen to Devon's full interview here
Subscribe on Apple Podcasts | GooglePodcasts | Spotify | iHeartRadio
Devon, a partner and leader in our community, faces prejudice through the countless times people harass him out of fear on New York City subways. The black, broad shouldered, autistic man says, “I was reading an article lately of how police violence is a problem these days and why cops need training to treat special needs people, especially others with autism, especially myself... when I try to do good to people they would not care what I say, they just want to be left alone because they think I’m being trouble to them. And that’s really sad. That’s really sad that they don’t want to hear what I have to say.”
The long fight against racism in America and the foundations of deception from the majority in power – deception which evolves to the culture and sneaks its way through the generations – is wearing people down. However, being out numbered should not cause us to lose hope. "We must not be tempted to confuse spiritual power and large numbers." Dr. Martin Luther King said in a sermon titled A Knock at Midnight. “Almost always, the creative dedicated minority has made the world better.”
The civil rights movement paved the way for disability rights and created a ripple effect of change – from the deinstitutionalization movement, shutting down horrendous mental institutions such as Willowbrook in 1987, to passing the Americans with Disabilities Act in 1990.
"If you are a human" Kenneth Hart says about our fight against COVID-1619, "you are essential."
Do For One is blessed to have a diverse community – a creative dedicated minority of our own. However, we recognize that we have a ways to go toward making the voices of the black women and men with and without disabilities in our community more central to our work. Saying the right things for a few weeks is insufficient. Addressing the symptoms of racial injustice while overlooking its roots is also insufficient. Our posture comes out of a steadfast commitment to rooting out racism in our own lives and in our community for the long haul.
Yours,
Andrew
The Higher Law of Love
This year marks the 30th anniversary of the Americans with Disabilities Act (ADA) which prohibits discrimination based on a person’s disability in areas including employment, transportation, and public accommodations. After signing the Act, President George Bush boldly declared that finally, “Every man, woman, and child with a disability can now pass through once-closed doors into a bright new era of equality, independence, and freedom.”
So why is it that 80% of NYC public school buildings remain inaccessible today?
And why were only 19% of adults with disabilities employed last year?
The current reality is even more dire, as many people with disabilities lost their jobs due to COVID-19. I could go on.
But perhaps most tragically – why is it that the great majority of non-disabled adults still do not have a genuine friendship with even one person with a developmental disability?
When I ask adults with disabilities if they have ever had a genuine friend who was not paid to spend time with them, the question is met all too often with a long silence, followed by, “No…I can’t think of anyone.”
Necessary laws have been passed and can serve as a form of education and perhaps regulate (at least) some overt discriminatory behavior, but it is not the complete answer. Social isolation and joblessness is still the daily reality for many people with disabilities. Why is this the case?
People with disabilities are socially devalued – looked upon as second class citizens – and therefore perceived to have less value than others. Because of this dark and dangerous belief, devalued people groups are at higher risk for being pushed towards the margins of society, neglected, and abused.
30 years of the ADA being enforced has inched us slowly toward a desegregated society. But legalities alone are not enough to heal the deep wounds that fester within perpetrators and survivors of social devaluation.
“Before thinking about ramps and elevators,” Do For One leader and wheelchair user Ben Thariath says, “I think just an openness to invite a person with a disability somewhere speaks accessibility in greater volumes than having a ramp or an elevator legally somewhere just for the sake of it. You know, because we can have a ramp or an elevator, but if no one uses it, then there’s really no point.”
Non-disabled people (those from valued parts of society) must choose to face and unlearn deeply held fears, prejudice, pride, and misconceptions which keep us from fully knowing and treasuring people with disabilities – people who are essential to the flourishing of the human race.
Put into biblical terms, “When one part suffers, every part suffers with it.” 1 Corinthians 12:26.
In his sermon titled On Being a Good Neighbor, Dr. Martin Luther King Jr. spoke about the distinction between enforceable and unenforceable obligations. While enforceable laws can dismantle legal barriers and bring people together physically through ramps and elevators, it is the unenforceable acts of neighborly love that transform lives at the deepest, most human level.
The Civil Rights Act of 1964 legally ended racial segregation in public places including swimming pools. But individuals like Fred Rogers knew that it would take much more than a law to change white people’s attitudes and privately held perceptions towards people of color. In 1969, Mr. Rogers aired an episode on his television show, where he and his black friend, Officer Clemmons, cooled their feet in the same small wading pool.
Through this scene, the two men modeled an unenforceable act of true neighborly love, inspiring a higher level of personal and social transformation that no law alone could bring about.
Love and friendship cease to hold true meaning the moment they are enforced through law, payment, or some forced expectation. We all know this. Yet, relationships secured through payment and obligatory roles are the daily reality over a lifetime for most people with disabilities.
This is why Do For One exists. We invite people (‘advocates’) to enter into a person’s life and to respond to their needs and interests through an unpaid and mutually beneficial relationship. Advocates do not log volunteer hours or sign a contract with an end date. Rather, advocates and partners grow to mutually understand and treasure each other’s presence.
Do For One advocates lean into this higher law of love through their personal concern, and unalloyed compassion. True neighborly love is unenforceable, and it can take on ten thousand different forms, depending on the partner’s interests and unique situations.
What does it look like in practice?
Two men in our community who were matched in friendship during the pandemic have been having regular phone conversations around similar interests. “My depression has completely lifted since talking with him,” the partner shared. The power of a friend sharing the gift of time cannot be overlooked.
A match made between two families at the start of quarantine led to beams of hope gleaming into the partner’s life. “She has been an absolutely lifesaver,” the partner shared, in reference to her advocate’s support with practical needs like getting groceries and prescriptions filled.
One advocate found creative ways to increase communication with her partner by supporting her to get a smartphone. They practice calling and texting each other, and go on socially distanced walks outdoors. As the partner grieved over how COVID-19 has changed life rhythms, she took a moment to reflect on what has remained a constant. “A good friend makes you feel like family. You don’t need a fancy party or great food when you’re with a friend who enjoys your company.”
Two friends who initially bonded over a mutual love for music could not be stopped by the pandemic from meeting for regular music mentoring sessions. They simply moved their sessions onto Zoom. “We not only have virtual music mentoring sessions, but also talk about things that friends talk about,” the partner shared at one of our virtual community gatherings.
The 30th anniversary of the ADA is noteworthy and ought to be celebrated. However, it is crucial that we view the man-made law not as a case-closed victory, but as a widened entryway into the higher law of love. True personal and societal transformation will only unfold when unenforceable acts of love are carried out through the lives of hope-filled creative individuals and communities.
Valuable Lives in the Shadow of COVID-19
This post was originally posted on the Roosevelt island blog TUESDAY, APRIL 21, 2020
Reported last Thursday that Assembly Member Rebecca Seawright and Roosevelt Island Friends Of Coler delivered much needed Face shields, N95 respirators, surgical masks, and gloves to protect our neighbors at the Coler Nursing Facility from the Coronavirus.
Andrew Oliver, the Executive Director of Do For One organization, introduces us to some of are neighbors who make Coler their home. According to Mr. Oliver:
Valuable Lives in the Shadow of COVID-19
I may have never stepped foot on Roosevelt Island had I not met Ralph. He was talking to people on Fulton Street, in Brooklyn, and asking for money. I assumed he was homeless. I asked, “Where do you live?” His eyes lit up: “Roosevelt Island. You take the F train to get there!” He was eager to jot down the directions for me on a torn piece of paper. I felt stuck. Was I to visit him?
So I was. A few days later I exited the island’s F train station and took the red bus toward the lighthouse. Next to it was Coler-Goldwater Specialty Hospital and Nursing Facility, where Ralph lived. His gratitude of having a visitor overflowed into a spontaneous prayer, “Lord, thank you for my friend who came to visit me!”
I now call Roosevelt Island home and lead a small program called Do For One. We build supportive and lasting relationships for people with developmental disabilities. One of the first relationships was when I invited Luis to become Ralph’s helper and friend. Luis visited Ralph regularly. Together they built a community of Coler residents who played dominoes around a table in one of the day rooms. Luis says, “I consider myself a no nonsense kind of guy and I feel like he was the same way. It made me feel comfortable. It was a simple relationship, and even out of that simplicity a lot was being exchanged.”
When I observe the smearing of facts and the lack of care available at Coler during the COVID-19 crisis, I think of the many faces I know who call Coler their home. We must ask ourselves, “how do we measure the value of a life?” With that question in mind, let me say it again. For many, Coler is home. No less than Manhattan Park may be yours. They are your neighbors no less than your friends over at Westview.
I’m thinking about our exuberant neighbor who has called Coler his home since he was a child. Every Christmas he is a soloist at the tree lighting ceremony. He looks forward to it all year! I’m thinking of the karaoke nights where he and I would sing “Nothing’s gonna stop us now” by the 80s pop band Starship. I think of the wonderful and diverse song choices that represent the incredible personalities and backgrounds of residents. I’m thinking about the former tugboat captain who for years lost touch with his family until his Do For One helper reunited him with his daughter over the phone.
I think of our neighbor at Coler who passed away a year ago who was a city driver who got into an accident resulting in severe traumatic brain injury. He was a husband, a father, and former coach. I’m thinking about the man who joined the dominoes table with Ralph and Luis when he looked at me with tears in his eyes and said, “I don’t want to die here.”
What is happening to our friends behind the walls of Coler right now? I hear there are numerous deaths and no one can report how many. I hear residents and new patients who’ve tested positive are placed in the same rooms as those without the virus. The fact that we don’t know the facts is an injustice to the singers and musicians, to the tugboat captain, to the poets, to the dominoes players, and to the dreamers who long for the day when we realize their story matters so they can live to tell it.
Let us stand in solidarity with our friends at Coler by joining the friendsofcoler@gmail.com mailing list and follow @OpenDoorsNYC on Instagram.
Being a Good Listener
The following is an updated version of an older post. It was originally created for Guiding Principles for Advocates, download the latest version here.
Good listening is key to any great relationship. People with developmental disabilities often lose personal agency over their lives when people in more powerful positions make assumptions about what they want rather than listening to what they are really trying to say. To be an effective advocate, it is critical to be a good listener, especially when the person you are in a relationship with (partner) is constantly misunderstood by others.
Here are a few general guidelines for good listening. Many of these guidelines are also helpful for those who cannot or do not choose to talk.
Quiet Your Mind
Too often we cannot follow people when they talk because we already have our own lineup of comments preoccupying our mind. Instead, quiet your mind so that you can take in what is being said.
Listen attentively. Be patient and wait for the person to finish rather than correcting or speaking for the person. Try not to interrupt.
Speak directly to the person you are listening to rather than around them. Avoid communicating through a family member or service worker who may be present.
Don't be afraid to ask questions. If you are having difficulty understanding, repeat what you have understood and allow the person to clarify and finish his or her full statement.
“Listening is where love begins”
— Fred Rogers
Spark Curiosity and Insight
It's not only important to ask questions to simply clarify what was said, but to ask questions to spark curiosity and insight. This lets the person know that you not only hear the words they're saying, but that you want to explore more of the topic with them. This is just what makes for a good conversation!
Your relationship should be mutual and open. Give your partner insight into your life as well. As in any healthy relationship, it should not be one-sided or condescending. This focus may help your partner feel more comfortable opening up themselves.
As long as the person being listened to feels supported and respected, don’t be afraid to challenge or disagree; that's also what makes a good conversation and will enrich your relationship.
The better you are at listening, and the more willing you are to open up, the more they will feel safe with you and open up themselves.
Make Time for Silence
Allow time and space to connect and relate emotionally. It might bring out a gesture, a word, or even intuition on a given situation that you will miss if you are busy filling in the space to avoid uncomfortable feelings. It’s ok to feel awkward. It’s a part of the cost of being a good listener.
Remember, talking is only one form of communication, other forms include:
Gestures
Emotions and moods
Body language
Facial expressions
Signs, signing, signals
Sounds
Reading and writing
Use of pictures, drawings, and other visual aids
(Joe Osburn & Jo Massereli)
- Andrew
Fall Update
Dear Friends and Supporters,
Back in May I wrote a letter to our community titled “Stitch a New Garment” which summarized how advocates were responding to the COVID crisis. Since then stories of advocates responding in love keep piling up.
But we are still in shock of how quickly the city (and world) has changed and we mourn the loss of so many lives. Our culture's values have been exposed by the way this crisis is disproportionately affecting those on the margins. For example, people living in nursing homes make up just 0.6% of the US population and yet a New York Times article revealed that more than 40% of COVID fatalities happened in nursing homes.
Much of this year mirrors the beginning of time when “darkness was over the surface of the deep” (Gen. 1:2)... but we must remember that then there was light and there was a separation between the light and darkness (Gen. 1:3).
A Vision Forward
COVID has no doubt changed New York significantly. It's heartbreaking and surreal. At our recent fall (virtual) info session, where we had over 30 registrants, Do For One offered a vision forward by inviting New Yorkers to not so much ask “What can New York do for me?” but rather “What can I do for New York?”
So what can we do?
“It is the unenforceable acts of neighborly love that transform lives at the deepest level” says Jane who (thanks to your support!) came on full-time in August. Her official title is program coordinator and she is quickly becoming our lead mobilizer – bringing new faces and a fresh momentum into our work.
UWS Picnic
Tom Kohler of Savannah Georgia Citizen Advocacy joined Do For One advocates for stories and a conversation on September 26th. One theme that came out of the discussion was the power of steady relationships.
The Power of Steady Relationships
For example, there is a Do For One partner who is a gifted writer who uses a keyboard to write essays about life as an autistic man who uses a device to talk. Here is one titled “A Caring Friendship.” Throughout the pandemic, his mom who cares for him needed assistance. Their needs we’re not only too specific for a food pantry type service but they were also facing profound social isolation from not being able to leave during the spring and much of the summer months.
Thankfully he was matched with a family in the neighborhood late last year. When the pandemic hit, the steady relationship that was already established enabled them to respond – not only to all of those practical needs – but to provide emotional support through genuine friendship.
The mother said, “She is a lifesaver and a dear friend. She renewed my faith in humanity.”
Astoria Picnic
How You Can Support
Now more than ever before we have an opportunity to bring new life into New York and we need your support. Starting November 24th we will begin our year-end fundraising campaign. We’re excited to share more stories and highlights from this year as well as our vision for next year.
Will you consider generously giving financially toward this campaign?
Then on December 11th from 6-7pm, we will be celebrating our 5th Annual Year-End Celebration online. There will be a video presentation highlighting the year and a look at what’s ahead for us in 2021. We'd love for you to join us. I will be sure to share the registration link with you when it is available.
We will of course be sure to make the video available to watch after the event as well.
The disheartening reality that we all know is that it's not just COVID that has plagued our nation – previous commonly held virtues like love and humility aren't so common anymore. We believe in the work we do specifically because love (often a quiet and steady sort of love) is at the center of the call. Love is the light that drives out the darkness. Thank you for believing that with us. And thank you for holding the rope for us financially.
Many Blessings,
Andrew
A place were love resides
Thank you for all of your love and financial support toward our year end goal! See below for our progress.
With a crisis of this magnitude, #GivingTuesday looked very different this year. Among the many moving fundraising letters I received yesterday, the one that stood out to me the most was from “Friends of Coler.” Coler Hospital is about a half mile from my home. Coler is a crowded home for hundreds of people with disabilities.
Julia Ferguson and Nicole Izsak write, “While we may have experienced a slight summer respite, our Coler neighbors have not had any relief. They have been cut off from family and friends, stuck inside with poor wifi and limited courtyard access for more than 250 days.” (note: courtyard access = ‘go outside’)
For more than 250 days we have more or less been told to #StayHome. How has that been for you? Some of us may have greater appreciation for our homes while others may be feeling like the walls are moving! Either way, a home we all long for is more than just a shelter to be kept safe from getting or spreading the virus. A home we all long for is a place where love resides.
With that in mind it’s no surprise to hear of the many ways that our voluntary advocates have helped to make people’s apartments feel more like a home we all want. A few have purchased and set up new furniture for the person with disabilities they are matched with (their 'partner'). One cleaned out and decluttered their partner and family’s home. Others have been delivering homemade food, mailing art supplies, and setting up online streaming and cell phone services.
One voluntary advocate sent a housewarming gift to her partner (Sharaya) to hang on the wall of her new apartment.
Sharaya says this about her new home,
“I am at peace here. I have not been at peace like this in years. When I come home I can sit down and rest.”
Sharaya says this about Do For One,
“There’s not another organization out there that spends time trying to find friends for people with disabilities. Thank you for Andrew and Ali who had this idea to lay down their lives for this work. And thank you for Jane who gave up her job to work for Do For One and come along this work.”
...
During COVID we've made over 300 phone calls to survey needs of partners with disabilities and their families that we serve. We identified those who were most at risk, what was needed, and began communicating with all of our voluntary advocates throughout the city who have already established a one to one committed and supportive relationship with each of them.
Your support enables us to not only build supportive relationships in order to address practical needs like a food delivery but to see more people's homes become a place where love resides.
Thank you for helping us raise $6,157 of our $25,000 year end goal so far!
Or mail a check to:
Do For One NYC
455 Main Street #4H
New York, NY 10044
...
So much love to you all,
Andrew
P.S. That's it for now unless you want an encore? :) OK, here’s another story.
Before returning to the U.S., a woman reached out to us for help. This was months before the pandemic. When I met her at the nursing home she was placed in, she had one bag and a broken wheelchair. We recruited a voluntary advocate to help her transition. The advocate immediately got her some much needed clothes. Then she set her up with a cell phone.
Then the pandemic hits... Who knew a cell phone would be the life-line she needed to not only stay in touch with loved ones while locked inside of the nursing home but to secure an apartment of her own on the Upper West Side. Then we helped coordinate new friends and allies in her neighborhood to transform her new apartment into a home.
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