Good for now. Good for then.
With COVID being an ever present reality, and as we've entered the coldest months of winter, we know that staying socially engaged has been difficult.
One idea that has been coming up is that the limitations brought by the pandemic is an opportune time for advocates to help their partner develop skills and interests. This investment of time is not only beneficial for social engagement now but could be helpful for increased community engagement beyond the pandemic.
For example, Rob (advocate), who is an established painter and writer, was matched with Richard (partner) over the summer months. During their frequent conversations on the phone, Rob discovered that Richard is a gifted writer and researcher. Throughout these colder months, Rob solicits Richard's opinions on the subjects he writes about and often Richard will research and bring material to the table. In addition, Richard has done some copy editing for articles before they are published online.
"Couldn't be a more apropos connection" Richard says,"Talking with Rob has been a tremendous help to me."
If you are an advocate, ask yourself, what skills or interests could I help my partner develop that might lead to more social connections in the future?
Here are some examples of skills and interests advocates could help develop with their partners:
Cook or bake
Learn computer skills
Make Jewelry (e.g. watch beading or jewelry making tutorials on YouTube together and try it)
Make Art (drawing, painting, scrapbooking, collaging, making cards that can be mailed out to friends)
Write poetry or short stories
Write or learn a song (e.g. if your partner plays an instrument, suggest they learn a popular song that others could sing along to)
Play online games on Jackbox or have a Netflix party
Here are some other strategies that Do For One advocates and partners have been using during the winter months:
An advocate has been sending snail mail to her partner’s group home, and calling once a week.
An advocate coordinated for their partner's favorite food to be delivered to the apartment in time for a virtual dinner together.
One relationship picked out a book to read and then meet on zoom to discuss.
One advocate routinely drops off groceries and care packages to her partner’s home.
Thank you Phoebe Goodman for your essay, “Friendship Lesson's from the Pandemic” which inspired the ideas in this post.
Portrait of a Friend
by Sarabeth Weszely
Just a couple days ago, Lenny and I were walking home from a Do For One picnic together when we heard someone yell after us. Whatever they said was indiscernible to me, but I heard someone respond, “no, they’re just friends.” When I asked Lenny if he’d heard what they said, he told me, “they asked if you work for me.” I laughed, so as to say no, and so did he as he said in the warm stutter I’ve grown accustomed to – which bursts after a short frustration like toothpaste from the tube– “yeah, you wish.”
Lenny lives in a group home ten blocks north of me, which he shares with a handful of male roommates and rotating staff members. This is where my boyfriend Jesse and I come every time we’d like to see him. We stand in the red doorway with its seasonal décor and fill out paperwork for contact tracing, and then we go wherever we go, Lenny’s eyes moving between our faces and hands and the low horizon of the sidewalk while he speaks.
Do For One picnic in Central Park
My story of entry into the Do For One community is entangled with many things. I came to New York on a whim the fall after I graduated college. The day I arrived, I sat for hours on the stoop of a perpetually-closed corner fish shop called ‘Elias’s’ with my duffel bag and guitar case, just a stone’s throw from where the M60 bus drops you off on its way from the airport to Manhattan. I sporadically checked the cost of an Uber, which was about $7, as I waited for the woman from the classified ad (whose room I was renting) to pick me up in her car, which she insisted on doing even as she ran hours behind schedule.
I didn’t have a job or anyone I was visiting. I came with the ambiguous goal of establishing roots in a place where I could still feel like a traveler, romanced by the anonymity of seeing an entirely new train-full of people each morning and hoping to somehow find a community to ground me in its midst. It’s loneliness that made me come to this city and loneliness that made me stay. There are a lot of ways you can describe loneliness, and I’m not talking about all of them, though I’m sure I’ve felt most. The feeling that made me stay was a soft kind of loneliness, the kind that makes you low and joinable.
“It’s loneliness that made me come to this city and loneliness that made me stay.”
— Sarabeth Weszely
During my first couple of weeks, I put applications in at just about every open restaurant in Queens and Manhattan I could walk to. I started and stopped a few quick jobs at places Iike PJ Clark’s and Redeemer’s kids’ church set up crew (a curveball in the job-hunt which made for some very early Sunday mornings) and I eventually ended up serving at a nice restaurant in the West Village. Nestled in that chaos was the late Saturday night I met Jesse, after which I didn’t sleep at all until my alarm rang for kids’ church, jittery the whole day with romance and anxiety and a dancing, open loneliness.
The following fall, Jesse and I met Lenny at the first gathering for the West Harlem Do For One community, which Jesse had been a part of starting during our summer break up. Lenny made his introduction by asking what we were going to dress up as for Halloween, and when I told him I didn’t know yet, he suggested I take advantage of a convincing resemblance and go as Misty from Pokémon. When we asked in return what he was going to be, he said he didn’t know either. A few days later, we got an email with no subject: I am going to be wonder bread.
On Halloween, we waited as usual in his doorway, where a part-time worker we’d grown familiar with was preparing fish with gloves on. Lenny emerged from his bedroom in a polyester sack of wonder bread that came over his head like a hood and had side pockets for him to fill with candy. We walked through cold and rainy Harlem, collecting candy from a few local businesses. Lenny asked about our families and our roommates, remembering details about their lives that I am quick to forget. He shared his hopes of visiting family in Colombia and working at a comic book store in Times Square. We looked forward to the day he’d be able to leave home independently once again.
Do For One West Harlem Community Potluck
Throughout my series of jobs in the city, which eventually moved closer and closer to the actual career I sought as a writer, I developed various health complications that would, after many doctor’s visits and tests, be boiled down to one mysterious stress response after the other. My frustration at this embarrassing limitation—my seeming inability to handle even half the work load of your average New Yorker—only made things worse. I felt like I was in a perpetual state of reevaluation as I sought to fix the issue, cutting back on as much as I could while still making as much money as I could. Of course, if you follow this formula through to the end, that would leave friendship at the bottom of the list.
I fumbled my way through the art of saying no, letting go of volunteer obligations and my lower-paying writing clients (one of whom, admittedly, was my mom). I even remember fumbling my way to my first Do For One info session, showing up to the YMCA on 63rd St. sweaty from Citibiking, having been sure to give myself an out if the meeting went too long. I did end up staying, and ended up staying for years to come. This community felt different from the city I was convinced was killing me; I was encouraged to embrace those around me who had limitations far more life-altering than my own, and in doing so, I came to see my own limitations in a new light.
“This community felt different from the city I was convinced was killing me; I was encouraged to embrace those around me who had limitations far more life-altering than my own, and in doing so, I came to see my own limitations in a new light.”
— Sarabeth Weszely
I don’t want to overplay the personal revelations I’ve been able to have through my friendship with Lenny and others at Do For One. What’s far more valuable are the relationships in of themselves, and nothing I write could come anywhere close to being as poetic as a real-life conversation with Lenny, Justin, Jose, or the countless others who have shared their lives and stories with our community. But I also would be lying if I said those relationships did not impact the way I understand friendship fundamentally. They’ve impacted my partnership with Jesse, the way I speak when I lead at church, and, inadvertently, my entire family dynamic around interdependence and need. People who would otherwise have lived quite separate lives from mine have played foundational roles as I’ve built a life beyond loneliness, simply by sharing their own loneliness with me. This learned-togetherness in suffering has impacted my most intimate relationships. To quote a poem from my first instructor in the city: “the journey between two people takes a lifetime.”
Lenny, Sarabeth, Jesse visiting a pop up art gallery in Harlem
Walking home from the grocery store one night not too long ago, Jesse and I came across a mound over 20-feet wide of bagged clothes and upside-down furniture, just a few buildings down from Jesse’s. Closest to the curb were hundreds of stacked books which Jesse quickly identified as rare and valuable academic texts. We rummaged through to save as many as we could handle from the morning garbage pick-up while Jesse wondered out loud about their owner: Did he work for a nearby university? Could he have been a colleague at Columbia? What had happened to him? And why had no one saved these books? The questions got a bit heavy (not to mention the boxes we carried up his five-floor walk-up) and so we called it a night, assembling the books into our own rickety towers on Jesse’s bedroom floor.
Eventually we learned this neighbor had passed away after living a solitary life with the care of a few aids. He suffered from Schizophrenia and never, to our knowledge, shared his scholarship with any university or institution. Some of his books are filled with notes and lines of poetry that let us into what was otherwise an entirely separate life from ours, though just a few walls away. It’s a bit of a morbid story, but it struck a note in us both: not a calling to save our vast and lonely world—it is hard enough to “do for one” what you wish you could do for everyone—but just how blessed we are in our commitment to cross a few walls and call Lenny our friend.
From Exclusion To Belonging Part 2: Here's To Changed Hearts
The importance of relationships, hospitality, and most importantly, a changed heart.
Loyalty
It all begins with an idea.
Loyalty is one of the greatest gifts in life we can give to each other. It is a principle of unfailing love.
I’ve had many discussions with advocates about the importance of loyalty in relationships. When trying to resolve problems, we can forget that your constant presence in a person's life is often the best gift you can offer them. Your effort of being there often counts more than producing outcomes. This principle helps us to slow down and really understand the person.
In spite of our most sincere efforts, it's easy to be distracted by the interests of human service agencies, the partner’s family, or possibly the DFO program itself. It’s also easy to be distracted by the needs of people around you, such as another person in need of friendship asking for your attention, or people you know wanting you to volunteer for good causes. Given to fickleness, we all can be easily swayed by other, sometimes more compelling opportunities when the going gets tough. Your partner will depend on your fidelity to them.
One advocate from the Citizen Advocacy organization in Australia says it best, “I love her like a sister and will do everything I can in my power to make it right for her.” When your partner is the focal point of your actions and decisions – seeing the world from their perspective – you will be able to achieve incredible things.
Even as adults, people with disabilities can be very dependent on human services and their families. The people your partner depends on will develop their own opinions on what’s best for your partner, or already have them. Sometimes these perspectives can be very helpful, and other times they may have views that miss important details of your partner’s needs and desires.
As an advocate who is independent, you have an opportunity to align yourself with your partner. You can focus on their primary interests with a fresh perspective, and without the common distractions many professional service workers have. You will understand situations from the perspective of your partner and shape these situations for their benefit.
“Do for one what you wish you could do for everyone. Go deep rather than wide. Go time, not just money.” – Andy Stanley
Continuity
Many people with disabilities often have people come in and out of their lives and have felt the pain of short-lived relationships and outright rejection. Many people with disabilities have experienced what has been called a “relationship circus” in which “helping” people appear in their lives and then, just as quickly, disappear.
People with disabilities need sustainable communities and relationships. Some people may need a certain amount of help for specific or shorter periods of time; but most people with disabilities need relationships and communities that will last and endure. This may be the case even when such a person needs less and less help, but still needs friendship. As relationships grow and mature, many advocates find themselves engaged happily in long-term, enduring relationships, which meet important needs for both the partner and the advocate.
- Andrew
(The above is an adaptation from A.J. Hildebrand's writings on Citizen Advocacy Principles)
Considering The Ordinary
It all begins with an idea.
We live in a world – including the “human services” world – that increasingly devalues people who do not possess wealth, beauty, power, influence or popularity. People with disabilities are commonly placed into professionally controlled settings based on I.Q. scores, diagnosis, and service plans. For many of these people, developing relationships with others who are not classified by test scores and doctor’s results is next to impossible. When this happens, the development of a social, creative, and spiritual life severely suffers.
At our Info Session held earlier this month (February 4th 2019), Alexa Burke shared about her experiences as a Special Education teacher, “Though I believe an outstanding education can affirm the dignity of people with disabilities, and can prepare them for life after school, there are limitations to the education system. Of course you value kids making progress—but their progress is not where their value comes from.”
She then shares about the benefits of her freely-given, mutually beneficial relationship with a woman who is intellectually impaired. Alexa reflects on her role in Alvena’s life in contrast to the limitations of her profession, “Alvena has become a big part of my life, outside of the boxes of what you might think of when you think of volunteer opportunities. Our relationship is also outside the boxes of my work. Where as my job involves strict boundaries of time and role with definitive markers of “success,” being with Alvena is the opposite. We cook meals and watch movies. We look up Youtube videos and plan birthday parties and share stories. We are friends, so we do what friends do.”
Considering the Ordinary
How can we deepen our relationships across societal barriers? I love what Alexa writes, “…we do what friends do.” Do For One teaches that disability is not the main problem, the BIG problem is that people are defined by negatively perceived differences. When this is our mindset, we might think that the best approach is to make "special" places for people with disabilities that end up being segregated, as opposed to looking to the ordinary.
Consider the communities and relationships you are a part of. What do you do with your family or roommates? What do you do with your neighbors? What do you do at your church? What do you do with your friends? Use the answers to these questions to guide how you interact with people who are different from you in some way.
Let us embrace the reality that shared human needs can be addressed in ways we are all familiar with. Remember, you are the expert in the ordinary things of life.
Yours,
Andrew
P.S. I’m indebted to the shared wisdom and language of Tom Doody for this one.
Fall Update 2021
Dear Friends and Supporters,
“Where do we go from here?” That’s a vague question. But it seems to be an important one for all of us right now. Do we just pick up from where we left off in March 2020? Or will we be different?
Some say we will double down on physical interactions and care more for our communities and environment. Some say nothing will change. Others warn about another possible surge. The only thing that is certain is that nothing is certain.
Navigating the past 18 months and beyond has been challenging and disorienting. It's been especially devastating for the people with disabilities Do For One serves who; lost their jobs, developed additional health problems, lost family members to COVID, and many are still enduring a restricted life through professionally controlled services.
KEEP HOPE ALIVE
“Keep hope alive” Luis, an advocate says, “It sounds corny but it’s always good to have a little hope because that brings life.” He said this in an upcoming end-of-year video when paying tribute to his relationship with Ralph who died in 2017.
Thanks to your support, Do For One offers a vision of hope. By steadfastly promoting heroic personal action, where one person cares for another as if that person's needs were his or her own, we have witnessed new life spring up into New York.
To summarize what we’ve been up to, here are three themes shared by advocates at our Advocate Forum in October.
MORE PEOPLE, MORE CONSISTENCY, MORE HOPE
More people. Advocates can become a bridge to new communities and opportunities.
Ivy, a new (2021) partner with disabilities says, "I actually have a handful of people's phone numbers from the church and they know who I am. That's never happened at a church for me before."
More consistency. Sowing into the little things over a period of time prepares advocates for being an active part of the bigger, more life altering moments.
For example, one advocate since 2016 recently intervened when her partner was almost separated from her mother and placed in a nursing home.
More hope. Imagining a more hopeful future, and then leaning in and working toward that new reality.
“Relationships require patience, humility, and a hopeful faith" Jesse, an advocate since 2019 says, "A faith which commits and trusts in the value of the work, even if results are not immediate, obvious, or perceptible at all."
In every realm of life right now, we are looking for certainty. The problem is that we are looking for certainty by looking to uncertain things like the economy, or the government, and even good causes. But we need to look higher. What New York City and the world is ultimately looking for is hope.
Hope spurs us toward action. Optimism says, “things will get better” but hope says, “it doesn’t look like things are getting better so I will be a part of making it better.”
That’s what advocates are doing.
YOUR SUPPORT
This year, at our 6th Annual Christmas Party, we celebrate Do For One supporting over 50 enduring relationships. Each relationship is a Beacon of Hope; a signpost, a light, a guide, as we move forward into a post-pandemic world.
Starting November 23rd we will begin our year-end fundraising campaign with a goal of $30,000. Will you consider generously giving financially toward this campaign?
So far this year, we've made 15 new enduring one-t0-one relationships. Next year we plan to continue making matches that endure and grow our staff and leadership to harness this momentum.
Do For One NYC
455 Main Street #4H
New York, NY 10044
https://www.doforone.org/donate
In a world where cynicism is perceived as the intellectual or moral high ground, Do For One stands in contradiction to that. In a world where positivity without action is the attitude used to feel comfortable, Do For One stands in contradiction to that. Do For One sees the desperate hurt in the world with sober eyes and runs toward it. Do For One is neither pessimistic nor optimistic. Do For One is hopeful. We can love. We can endure. We can stand up to the walls of injustice and work hard to break those walls down. All because we have hope.
With love and appreciation,
Andrew
little is BIG: November 2021 Newsletter
It all begins with an idea.
Dear friends,
One of the standout themes at our Advocate Forum on October 16th was don’t underestimate the efficacy of the "little" things.
Sowing into the little things over a period of time prepares advocates for being an active part of the bigger, more life altering moments. Events like taking a trip with their partner outside of the city, improving their home environment, helping them find work, or advocating for them in a hospital... even saving their life.
See below for some profound words of wisdom and insight on the subject from two advocates.
With love,
Andrew
P.S. Looking for a way to help us? Share these stories with likeminded friends by forwarding this newsletter or following us on social media.
Jesse
Jesse is an advocate and member of Do For One’s Relationship Support Committee. Throughout the last three years he and Lenny have been sowing into the "little" things by going out to restaurants, attending concerts, baking cookies, watching movies, and more.
"In short, his world has expanded, even if just a little bit.
The staff now see the life-giving value in our relationship and they’ve given us a little more leeway without being so boxed in by the system. It’s possible, I hope, that our friendship could change the culture of the group home for the better, even if just a little bit.
Relationships require patience, humility, and a hopeful faith. A faith which commits and trusts in the value of the work, even if results are not immediate, obvious, or perceptible at all."
– Jesse, advocate
Burnette
Burnette (aka Bunny) has been a faithful advocate, loyal neighbor, and friend to Stacy for too long to count. She comments on when we asked her to share about their relationship at one of our info sessions,
"When Andrew asked me about speaking with this group, I said 'I’m not sure we are a success story.' That gave me pause – who decides?"
This is highlights yet another point which is that advocates often don't realize the effect they are havng on their partner's life.
Bunny continues,
"I hunt for ways to connect with Stacy. I meet her for brunch at a familiar neighborhood diner (and make sure I tip well). I’ve tried more creative outings, although those have been less than smooth so far. I leave messages for her on the phone, just saying hello...
I have a friend who is a musician and songwriter who calls herself and her music, “As it is is good.” While I continue to pray and work with Stacy in order for her to have more positive experiences in her life, I also want to make sure I hold her in my heart just as she is."
– Bunny, advocate
Jane and I are so grateful for all the creative ways advocates and partners are growing their relationship. Here are some other ways we see advocates sowing into the "little" things.
Matthew texts his partner on a regular basis between get togethers
Sue stays in touch with her partner with phone calls and written letters in between meetups
Ali and Jenny have a go-to Starbucks in their neighborhood where they catch up
“What if someone has the freedom to approach “an issue” without having to completely surrender to the demands of financial efficiency, "impact" maximization, or the pleas of one’s political constituents? Welcome to the world and work of Do For One.”
– Jesse, advocate
From left to right: Chris, Alexa, Jesse, Sue, Jane, Bunny, Andrew, David, Jason
Advocate Forum October 16th, 2021
Thank you for your support!