The Four Commitments | Part 3: Create Something that Belongs to You & Your Neighborhood
This the 3rd part of a six-part series. Link to Part 1, and Part 2. Links to subsequent parts will be updated as they are released.
As more and more families did projects, we got stronger around our “Four Commitments.” We all tried them on, almost like we would a new jacket. How did it feel? How did it fit? Did we prefer our old threads?
Families loved it, once they got going.
The problem for some, as it is when trying new things, was in breaking out of old patterns.
One family who said “yes” to doing a Starfire project was struggling. They kicked around dozens of ideas. What if we turned the empty storefront across the street into a space where neighbors could tell stories together? What if we hosted an event at the local high school theater? How about the basement of the apartment building down the street that hosts a neighborhood children’s summer camp? What could we do there?
One day, as we huddled up for our monthly chat, they shared some exciting news. They had landed on an idea! They had talked to a bunch of neighbors, at my suggestion, and had heard a common refrain: There’s no block party in our neighborhood!
“What do you think?” I asked them.
“We like the idea,” the mother replied, “But we want something with more pizazz!”
They spent a few days thinking on it, and eventually, wisely decided to follow the energy of their community.
“Even though we aren’t all that passionate about a block party,” that mother said with a laugh, “We are passionate about being connected to our neighbors who are passionate about a block party!”
So it was on.
Over the coming months, they focused on planning the party. They recruited neighbors to design flyers. They sketched out the space and made lists of all they’d need to host it. Things were humming along. They and their neighbors were excited. And then we ran into an unexpected snag: “who to invite.”
“Do we invite our friends who have children with disabilities?” they asked.
It was tricky. This family was leading the way in many disability-centered organizations, so their network reflected that.
I was their “project mentor.” And one of my responsibilities as a project mentor was to say things that I knew might be tough for them to hear.
At the beginning of each project I helped mentor, I would tell each family “I’m on your side second.” They would usually look at me, wondering what that meant, and I would explain that my role in helping them carry out this project was to be on their child with a disability’s side first. That meant, I would explain, that sometimes their best interests and their child’s best interests were at odds, and I would do my best to advocate for their child’s interests.
This was one of those times.
I knew that in all my efforts to help people build projects, this was one of the toughest. Keeping it from becoming a “special needs” or “disability” event was critical. Otherwise, it would just be more of the same, reinforcing the outdated and harmful societal notion that “all those disabled people” belonged together.
But intentionally not inviting people because they had a disability, or had a child with a disability, felt like we were violating the very core of inclusion.
And people would call me out on it. Some called me “a discriminator.” Others went as far as to say it was bigotry. Those accusations always hurt, because I knew it was the furthest thing from the truth.
I struggled with how to help this family understand what was at stake if they took the easy way out. I worried that I would offend them or hurt their feelings, or they’d think I was too radical and dismiss me.
But I knew the cost their child will pay if I didn’t say it.
So I took a deep breath and said, out loud, to that beautiful family “This might seem weird, but I have to say it,” and I told them the risks of including their “special needs network.”
“If you all decide to open this up to your friends with children with disabilities who don’t live here, who pays the price?” I asked them.
They sat there quietly, thinking it over.
“It won’t be me,” I told them. “Or any of our Starfire staff. And it won’t be you. If a bunch of people with disabilities show up to your events, you’ll be just fine, for the most part.”
“Our daughter will pay the price,” they said.
“Yes,” I responded. “She will lose her chance to be known in this community on her own terms, and will, once again, be lumped in with ‘disability’.’”
They nodded their head.
“And,” I added, “The rest of us are asking her to pay that price just because it makes us uncomfortable to try another way.”
“I got it,” said the mother, hopefully. “We’ll say that anyone who lives in our neighborhood is welcome to attend. That will at least help people know it’s only for people who live here.”
“Great idea,” the father said. “But what do we tell our friends who don’t live here and have children with disabilities? I’ve already mentioned this to a few of them and they said they’re planning on coming to support us.”
“My best idea,” I replied, “Is to tell them why you’re limiting it, and I think they’ll understand. Offer to help them do a project for their family. Tell them you’ll gladly not attend, but support them from behind the scenes, and ask they do the same for you.”
“I know it sucks,” I added, “But all families deserve to have their own unique, personal stories. Including their family, too!”
It was tough. Families with children with disabilities face a lot of social rejection. That does two things, over time. It orients them toward less painful options, like “special needs” events and programs. It also makes them sensitive to including everyone, an effort to give the gift they wish they were given.
And here I was asking them to take the more difficult path of risking the social rejection of a non-disability event. Even worse, I was also asking them to ask other people who’d experienced the pain they’d experienced to not attend. We all felt horrible, but knew giving up the easier path was worth it to live up to our commitment to make this uniquely for their daughter.
“Will you come to our event?” they asked me.
“No,” I told them. “As much as I want to be there, soaking up the goodness, I don’t live in your neighborhood. My only connection to your family is through disability. Through Starfire. I don’t want to be the weird stranger taking the spotlight, or even worse, spotlighting your daughter’s disability as the purpose of the event when people ask me who I am and how I know you.”
The next time we met, they had told me about their conversations uninviting their friends who had children with disabilities. One friend understood completely and hugged them and told them she understood. The other friend told them he was slightly offended. He insisted that he would still be joining with his daughter with a disability. The family, understandably, didn’t push back much.
“But you know what’s even weirder?” the mom asked. “We are getting RSVP’s to our event from families with children with disabilities that we don’t even know!”
It was then that we came to understand the power of the disability-social-media-algorithm. They had posted it to their social media accounts. Because they’d spent a lot of time sharing about disability and disability-based organizations, and were connected online to people like me, their posts got shared to other people who were in the same algorithm!
They had worked hard to keep their crowd hyper-local. They personally handed out flyers, made a sign at the location of the Block Party, and sent texts to their neighbors. But now all of that was drowned out by what the social media algorithms thought was most significant about their family: disability.
There was no stopping a group home employee from dropping off a van full of people with disabilities at their next event. What might happen if it gets shared to a regional disability email list as an inclusive event for families with children with disabilities? It was overwhelming to consider how fast the purpose of the event, to connect neighbors to each other, could get out of hand.
It was an epiphany to me, and I pledged then and there to never share anything on social media about a family’s project. My network, after all, was also part of that disability algorithm.
“We did have one awkward conversation,” the mother added. “We were attending an annual conference about my daughter’s disability, and the conference planners shared our project as a hopeful story for other families. Right after that, a family from Cleveland, who’s son has the same disability as our daughter, came up and told us they’d be coming to the block party!”
“Oh no,” I whispered, and buried my head in my hand.
“Don’t worry, though,” she laughed. “I had the perfect response. I said ‘Sorry, our party is only for our neighborhood. But if you want, we’ll help you plan a block party in your neighborhood!’”
“How’d they take it?” I asked.
“Not well,” she said. “But it was quick and we just went about our day. I think we’re starting to get our courage up around all of this.”
After their block party, they came to see what I meant. People from the neighborhood met their daughter for the first time, getting to know her name and discovering that being around her was easy and doable. They loved it and started planning the next one immediately.
The one hiccup came when their friends with a child with a disability followed through on their promise to attend the block party, even though they didn’t live in the neighborhood, and even though they had been asked not to join.
Some neighbors assumed that the two young people with disabilities were best friends. Some of them asked if the block party was a fundraiser for disability organizations. At one point, the two young people were at a table, together, by themselves. The family noticed all this and reflected later on it.
“It was a reminder of why we’re doing this,” the family reflected the next time we met. “We are just getting started building a new kind of network for our daughter. One that is just for her, and us, outside of disability.”
I was so impressed with the strength of that family. They showed the power of families to lead the way in inclusion, by taking the hard steps of walking with their commitment to host a project that was unique to their daughter’s life.
It was a helpful, and beautiful reminder of the level of intention it takes to try and create a new story, and build a new kind of future, for families like theirs.