When I was in graduate school for social work, I interned with an agency that went out into the community and visited adults with mental health challenges and intellectual/developmental disabilities in their homes. On my first day, I was paired with a provider and we drove out into the country to take medication to a young man with autism who lived with his grandmother.
At the end of a winding dirt road, we stopped in front of a small house, surrounded by fields and trees. It was probably around 2pm in the afternoon; it was a sunny, autumn day. I remember being able to hear the blare of the television from the driveway.
We knocked on the door, and were greeted by a smiling older woman who invited us to come inside. Stepping into that house from the beautiful day outside felt like walking into another world; one that was dark, and loud, and oppressively sad. There were dishes piled in the sink, on the counter tops, and knee high on the floors, open boxes of cereal and snacks covered the table, and the furniture and floors were littered with the newspapers that had also been taped over the windows, preventing any sunlight from coming in. There was a pervasive smell of urine, and cockroaches meandered through the debris. Grandmother cleared off a space on the couch and offered us a seat. She turned down the television and said “Jeffrey. Jeffrey, honey. Bill is here to see you.” A pile of newspaper on the floor moved slightly, and a face emerged. And then the body of our 24-year-old client. Jeffrey sat up slowly, his eyes fluttered open, and he pointed to the television. “Yes, yes. Just a moment,” Grandmother said. Jeffrey became agitated, told Bill to go away, and buried himself back under the fortress of newspapers. Grandmother sighed, turned the TV back on full volume and asked us to step outside, so we could talk.
It was a short conversation. Yes, Jeffrey was taking his medications. Yes, Grandmother tried to get him outside every day, but it was often impossible. And yes, Grandmother was managing. (But was she? And was Jeffrey? And is this really the best we can do to support our folks with disabilities and their elderly caregivers?) The entire visit took less than 15 minutes, but it shook me. It was such a profound experience that, the following week, I changed my course of study to macro practice and began to research the physical and mental health impacts of housing, nature, and community. It made me think long and hard about the concept of home. For so many of us, our home is more than just four walls and a roof; our home is our sanctuary. It’s our space of belonging and identity. We surround ourselves with our memories and our possibilities, our furniture is worn into the shapes of our bodies, and our walls and shelves hold the reminders of the things that bring us joy and comfort, like our favorite books, pieces of art, family photographs, and our plants (or- if your house is anything like ours- what remains of the plants after being tormented by the kittens). In times of stress or uncertainty, our homes have served as a refuge, a place to retreat and recharge. It provides a sense of solace and familiarity in an ever-changing world, and offers a certain amount of control and predictability in our lives. It can even be a shelter from ourselves, in our difficult times. A closed door, a quiet room, a place to hide away and disappear when that is what your spirit is calling you to do.
Our homes can also be a reminder of the privilege that many of us have in having access to a place we can truly call our own. For adults with intellectual and developmental disabilities (IDD), transitioning to a home of their own represents not just a physical move, but a journey towards greater independence and integration into the community. It can also seem like an insurmountable challenge. For many adults with IDD, moving out of their parents’ home not only requires a degree of financial sustainability, but is dependent on a person’s ability to connect to consistent and quality support networks, without which, a majority of our folks could not participate in the social and vocational components of life that are necessary for positive health and overall well-being. And so, community and natural supports are a necessary extension of what home needs to be in order for many to not only thrive, but to live safely and with integrity.
How is it possible that we can live in a world that is so spectacularly innovative and creative (I mean - the internet, solar generated electricity, self-driving cars, artificial intelligence, virtual reality, space travel, bitcoin, robotic surgeries, 3D printing, and the list goes on for miles) and yet we are completely at a loss as to how to provide housing and connection for our most vulnerable citizens. How do we get the people with the power to care about our loved ones with IDD and their future? (Sigh.) I don’t know that we can.
And so, we take steps to do it ourselves in our local communities. We come together and support each other, we champion the grassroots efforts of those who are putting a ton of energy and effort into creating options that offer HOPE for a better world.
Blawesome's invitation is to celebrate Independence Day with flowers that symbolize the pursuit of freedom for everyone to live and work as independently as possible. As we approach July 4th, our aim is to align the spirit of the holiday with meaningful action by joining hands in creating inclusive spaces and supporting efforts that promote independence, dignity, and equal opportunities for all individuals, including those with IDD. See below to order your Hope for Independence bouquet- together, we can make a difference and celebrate the diversity that enriches our communities.
Love and light,
Rebecca, Raimee, and the Blawesome Crew