In 2008, when I was at UC, I took a class on education as it fits into cultural phenoms and cultural groups. We had to write a long, detailed ethnography, exploring our own families traditions, familial patterns, and the like, as a distinct cultural group with a lens towards historical events which would have shaped behavior.

We were to interview the oldest person we knew to begin to collect “data” and understand our families through genealogy, culture, spirituality, material possessions and artifacts, educational patterns, etc. At the time, choosing the oldest person in my family was slim pickin’s. Uncle Ron, my grandmother’s last remaining brother, was the oldest living relative I knew, at the ripe old age of 66.

While I had heard family names of people I’d never met frequently while growing up, and visited annually each Easter their graves at the Gate of Heaven Cemetery, I hadn’t given much thought to who these people were. Two particularly great aunts were told in stories together and their names sounded like one: AuntieAggieandAuntieBernie. The sounds kind of bumbling in your mouth like a car hitting speedbumps and potholes. Fused in pronunciation and every story, they became one entity, a duo of women that existed together in every recollection, every tale.

In my ethnography I wrote in 2008 (I’ve probably saved every paper I’ve ever written) I write of Mary Agnes, “Aggie”:

Interviews with Ronald Lee Meyer, Sr. (grandchild of Edward and Margaret Bahr Suermann) indicate that the youngest Suermann, Mary Agnes was born with cerebral palsy. The Suermann family followed advice from the town physician [In Indiana] to institutionalize Mary Agnes, “Aggie” around the age of four, since public or private schooling did not exist for children living with disabilities. Margaret was not comfortable with this decision, but followed the physicians advice regardless. The institution was located in a nearby town in Indiana, though the exact city could not be recalled and public records on rural Indiana could not be found. Ronald Meyer, Sr. continued that family visited Mary Agnes in the institution. Each visit they found Mary Agnes weeping and incredibly unhappy. The staff insisted that Mary Agnes was unable to talk. The Suermann’s however, were aware that Mary Agnes could talk and that she told them stories of the treatment in the institution. The Suermann’s followed the traditional advice at the time that children with disabilities should reside in institutions. However, the breaking point in the Suermann family was on a final visit to the institution when Mary Agnes recalled to them that all children were stripped naked, laid out on a gymnasium floor on mats, and sprayed with a hose to be bathed.

I want to be upfront and honest that this is neither a criticism of the Suermann family or praise for how they lived and what was decided. I wasn’t there and we all know that families make the best decisions they can with the resources and answers they are given. Aggie, being institutionalized at age 4 was what was expected. It was, the “norm” for a child that was deemed not “normal.” The Suermann’s removing her from an Indiana state institutional was not the norm, but it would change how Aggie’s life would unfold.

Bernadine “Bernie”, Mary Agnes “Aggie” & Margaret -sisters-
:ate 1930s. It is likely that Bernie is around 20 in this photo, Aggie, about 12, and Margaret probably 24

The history of how the Suermann’s got from Indiana to Cincinnati is a little unclear. We know that Edward Suermann (Bernadine, Margaret’s and Aggie’s father) died in 1924, two years after Aggie’s birth, falling off of a ladder. We also know that Margaret Bahr Suermann (their mother) died in 1932 when Aggie was only 10. Nevertheless, Bernie, Aggie, and Margaret Suermann (my great-grandmother) all came to live in Cincinnati at some point, likely in the late 1930s.

It seemed strange then to analyze my family through such a clinical lens, it seems more strange now that I’m in the thick of thinking about who is in someone’s life and how people can either hinder or help depending on how they see a person and what they hope for them.

Families aren’t immune to this either. Families aren’t sterile. They’re messy, chaotic, and randomly assembled. You don’t choose the contents of a family. It is, figuratively of course, a mixed bag of nuts. Families are unique and strange. Stories are sensitive, dates and years are important. The list of people and events are sometimes hard to follow for outsiders. History gets jumbled, mixed up, and feelings get hurt over heirlooms like knickknacks and jewelry, and photographs, houses. Sentimentality takes over practicality, sometimes.

But stories persist in families, and they are often a sense of pride. For AuntieAggieand AuntieBernie, their story has been told through my grandmother, and my aunts, who though teenagers when they passed, still remember their apartment, purchasing Bernie’s cigarettes for her at the pony keg, the Suermann sense of humor.

There weren’t, it should be noted, programs to keep Aggie involved in her community, likely no means to transportation save for a family car likely owned by a brother. There wasn’t “respite for the family” or “respite” for Aggie away from her family. They seemed to make it work then, and photographs show that Aggie was included, seamlessly, into most avenues of family life.

Suermann Cocktail Party mid-1950s
(from left clockwise: A “nameless” cousin or neighbor, older brother Leslie Suermann, Margaret Suermann Meyer, Bernie holding Aggie’s cup, Aggie

I wasn’t there, obviously. I can’t say that it was easy, or difficult or blessed or burdensome or anything else that “official studies” report about families whose family includes a person with a disability. I just know that Aggie’s story hasn’t been lost in my family. It could have been had she stayed institutionalized in Indiana. But in the picture above, she’s a part of the cocktail party, dressed fashionably for the 1950s, her hair nicely done, a brooch on her sweater. I love that if you look closely behind the water stains and crinkles, Bernie holds Aggie’s cup, casually. It’s subtle, but speaks of how the family included her, even in drinking, (in true German fashion). My mom pointed out once in these old family photos, that Aggie’s siblings were also sure to fold her hands nicely for the photo-op since she often had arm spasms, bending over backward to make sure she looked her best, even for a photo that likely only family and friends would ever see.

The Suermann-Meyer Family circa 1957, as best as I can guess.
Aggie is included in the large family photo far right, dressed in the on-trend, capris and black and white saddle shoes; My grandmother, age 12, sits behind Bernie shoulder right center

As it’s been told to me, Bernie felt both an family obligation, and some resentment in living her life “taking care of Aggie.” Never married, and the second youngest of the Suermann children, she cared for Aggie until her own death in March of 1985, one month before Aggie’s in April.

Margaret died in February 1985, Bernie March 1985, and Aggie April 1985. I missed meeting all of these women by a few months: I was born in November 1985, so have delegated myself as a storyteller, honoring the family legacy.

It becomes more personal now that my work is framed in the context of disability and services. Aggie’s life was lived 1922-1985. Of course, it’s an understatement to say that things have changed both for my family but also in the history of disabilities, how people were treated and choices families make. It’s interesting to think that families have tried to do it alone. Services have tried to do it alone and now we find ourselves at Starfire working on how to bridge these two.

Let me be clear here that the proverbial “it” here is not:
-fixing people
-doing things for people
-controlling people
-merely keeping people entertained
-transporting people
-babysitting people
-warehousing people

The “it” here is the sought after “right thing,” that often is grey and confusing and not clear. It’s ultimately though, in most cases, a good life that both families and services must work towards together with someone.

Bernie, I’m sure, would have respected a service that could help as both she and Aggie aged, take care of some of the physical demands of caring for someone who uses a wheelchair while you get older, too. A respectful staff member that might have helped navigate insurance and social security would have been welcomed. An advocate or service facilitator that went over real options with Aggie and her family would have been good, too. (And I’ll admit my ignorance, they might have had these things, but being 1922-1985, I’m sure they were limited. There weren’t that many laws or options in place to protect Aggie, support Aggie, or assist Aggie her journey to discovering her gifts, or the Suermann family in understanding how their roles could be more than caretakers.)

Margaret, Aggie, Bernie, 1970s

Of course, Aggie was loved and cared for and included in her family at every event and photo-op… She was well-fed, happy, lived with her family, and in all the photos I’ve seen dressed quite on-trend with ladies of that day and age. Who was she outside of being Margaret and Bernie’s sister? Who was she outside of being “cared for?” I don’t know. So much of her story is tangled in Bernie’s story of “taking care” of her, as necessary and important and needed as it was, so I don’t know much about Aggie as her own person, and that’s important to the story, too.

I don’t think AuntieAggieandAuntieBernie’s story is particularly remarkable, inspirational, or anything of the sort. In fact, I think it cheapens it when it’s read as some sort of heroic, or worse, ‘special’, tale of sisterhood. I’m sure there were squabbles and disagreements, resentment from both sisters, annoyances, unspoken battles. It’s just one story of one family making it work; they just happen to be related to me, and I happen to have beautiful pictures of their lives. Every family has their own story that could be shared, or would prefer that it not be as they figured “it” out or as they continue to do so. And the figuring “it” out, how to be a family, how to grow together, how to bend, how to make room for disagreement, how to celebrate, how to age, how to care for someone with respect, how to die, how to make “it” work, is let’s remind ourselves, not a disability issue.

As we at Starfire continue to change and grow and invent as an organization, we continually remind ourselves that working towards community is a together thing. Myles Horton begins “The Long Haul” before telling his life story:

To my forebears and loving family, and to the unsung and sung women and men, the world over, from whom I have learned

I guess this post is just that. Forebears, loving families, unsung and sung men and women from whom I have learned, keep learning with us.