Only Anecdotal

Who knew that a hairdresser would be one of the top wishes of so many home-bound people I see. A vanity, some might say, but looking good can make an enormous difference in the way a person feels.

Not too long ago, I spent seven years in a small village in Vermont. It was the setting for Hitchcock’s “The Trouble With Harry”, but it could be the setting for nearly any imagined perfect New England picture storybook, the white houses in the hills (most often covered in snow), dairy farms dotting the landscape, along with the sugar houses. It was real. I lived in such a white house, with a dairy farm across the street.

Now, the thing I had not thought about much before I moved there is that dairy farmers work harder than anyone I have ever known. It is grueling, incessant work in an often-brutal climate, and not for much glory–or sustainable income. As a result, many dairy farmers run some other business on the side. The dairy farm across the street from us had a beauty shop,  called The Beauty Hut, and when it was open, Cindy styled hair and entertained the local ladies with the latest gossip. She also rented videotapes.

Several days a week, Cindy moved her operation down the street to the rest home across from the Presbyterian church and preschool. Several of Cindy’s customers lived in the rest home, and were not able to get to her shop ver easily. Cindy ended up working in the rest home full-time later on, when the dairy compact expired, but that’s another story.

We knew the rest home well, as many of the people who lived there went across the only painted crosswalk in the village to go to Sunday church. Several years before we arrived in Vermont, the church had raised a lot of money to put an elevator in so that people who could not use the stairs could still make it downstairs for the Sunday lunch, and up the short distance to the sanctuary.

It was a pity that the schools were not quite as forward thinking in their accessibility. Many a grandparent missed the Academy graduation, because there was nowhere to park. Once, when I spoke with the village principal about this, he told me to park in the grass, next to the fire lane. After I had written a letter, called the ADA office in Boston, complained for several months, the custodian went out to the front of the elementary school and put up a sign. It was not the way it was supposed to be, but it was close, and it helped a lot of people besides my son. Unfortunately, a few months after we left Vermont, my neighbor Cindy went to the school and took a few pictures for me: the signs were gone. Such was the feeling in the schools: good riddance.

We left Vermont because it was so hard to put together services for my son. A man with developmental disabilities who used to run errands for the town hall had left, as well. He was included in the life of the village, yes, but he was unable to get all the help his family needed to keep him at home. Another woman with autism lived still with her aging parents. Her sister lived with her husband and daughter next door. The woman’s mom rode with me for half the year to Montpelier, where we went through the Rural Autism Project. She told me of her fears, aging, her promise to her younger daughter that she would never have to be the one to care for her sister. But the options were limited otherwise. It was one thing the Rural Autism Project could not answer, and she left the courses midway.

The preschool was the best year for my son, with a lovely teacher who just understood what to do, and two very good aides for my one child. My son thrived, and walked every Friday with the other kids across the street to the rest home. The residents all knew us, and we visited often, talked to people as my kids admired the fish tanks in the front porch.

Sometimes a rest home resident got sick and had to move to the next village down. It had a nursing home, set back behind the general store. For a few months, we had a French conversation group in the memory unit. Many of the people lit up when they heard French, and could say things they never said anymore in English–or so we heard. Some of our students had spoken it as children. One woman used to teach it herself. Cindy’s mother-in-law lives there now, just down the road from where she lived all her life.

I have been thinking about this life now, as the leaves this year are surely crimson and gold with the weather we have had. I had never imagined myself living in such a rural setting. It was hard, in many ways–everything was a much bigger effort, from shopping for groceries to getting the wood stove going in the morning. I saw an older population, accepted and folded into the small village in their homes, in the rest home, and often in the nursing home if necessary. The services were not like here–it was more a matter of people watching out for one another. It may be the only way to survive in such a small community–you have to be accepted in the community.

I remember waiting for Ernie at the general store one day as he filled a shopping bag with the items on a neighbor’s list–she can’t get out just now, he told me. Someone was going to take the bag up to her house. I thought of how we can adapt to help people more, and I think that even in our big urban and suburban communities, people often do help out if they understand what they can do, and how.

But that was key. I do not want to paint too rosy a picture of our lives in Vermont; we left because despite the generosity of state funding, we could never find the appropriate help for my son. Problem was, few seemed to understand that people with disabilities do not have to be limited in what they are able to do. They can be taught, and challenged to do more, if differently–but that requires some degree of expertise, and a greater degree of hope.

The rest of the world moves at a different pace than Vermont, and perhaps at times with less willingness to embrace the idea of progress.  Sometimes people were surprised that my son even went to school; others resented the spike in the town budget for my son’s education. Our house was egged once. The fights with schools there were just as difficult as they are here, if in different ways. It was rare to battle with arrogance, but not so rare to battle with inexperience. There were just very few kids like mine, and few opportunities, then, for professionals who could live there. Too often, my son became the school special mascot more than just another student–a sentiment of pity that I resented enormously, although I realized at last that it was the best they knew to do.

And so, I find myself thinking of that frustration, along with the loving acceptance of disability that we found from so many people. I think of the messages I heard so often in that bucolic setting, respecting the elders of the community. I remember the veterans marching to the cemetery on the common every Memorial Day. I remember the ladies and their hairdos, and Cindy. Everyone knew that the older people had earned their time, that we should take care of them, and as I think back, they did understand the most basic thing about people: that they are people, and should not be forgotten or left out.

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As I think of villages, I visited the new Edward M. Kennedy Health Center in Framingham last week, during their opening ceremonies. What a lovely space, such an amazing feeling to walk into an environment filled with optimism and hope. I have seen many of the health center’s patients in my own work, often meeting them in the cramped spaces where these talented professionals managed to do great things for years. My friends Claudia and Marcia, social workers who call me once in a while, now have room and privacy for the valuable work they have always done. I can only imagine where things can go from here… (and will write more about this in the next few weeks).

Another noteworthy item from the news: Eric Coleman, doctor who created the Care Transitions programs, has won a MacArthur Foundation “genius” award. Coincidentally (?), this was announced on the same day that Medicare began to penalize hospitals for readmitting certain patients within thirty days of their last hospital discharge. Dr. Coleman’s work has been much lauded as the programs spread… but are they enough? And on this, I will write more in the next weeks, as well.