Back in the 1990s, my wife and I were both fairly active in Seattle’s bisexual community, working to raise bi visibility and add B and then T to the now long list of initials in LGBTQIA (did I forget any letters?). At the time it was common to claim bisexuals did not exist and just needed to make up their minds. When our daughter was born, priorities changed, and our involvement with the queer community became more peripheral. I nearly always go to Pride and we retain a few bi friends, but in general the number of my queer friends has diminished over the years as my focus has shifted to children, grandchildren, great-grandchildren, aging parents, jobs, etc. But with the recent targeted attacks on the transgender and drag communities in particular, I am working to re-establish some connections for the civil rights battles ahead of us. One of those connections came from a surprising direction and a different part of my life.
Remember their names
Pride Month began for me with inviting a gay graduate student to join me for the Pride Month art installation at the Fred Hutchinson Cancer Center where i work, which to its credit has had a very active DEI program since around the time of the George Floyd murder. The featured art is a collage, better appreciated up close where you can read obscured text about the number of anti-trans laws introduced in the last couple of years. The artist was barely able to speak about it, as he/they choked up on the first sentence. I commented to my friend that he must have lost someone very recently, but then reflected that I know from experience that grief can burst out in unexpected places years later, particularly when sharing it with someone (or many someones) who does not already know about one’s loss. The phrase “remember their names” used by the artist immediately took me back to the loss of friends to AIDS shortly before protease inhibitors became available. One of my best friends died before our wedding but some how managed to posthumously send us a wedding gift. He and other lost friends and family have been on my mind since, and I commented recently to my wife, “there are too many dead people living in our house.”
One of the dead people living in our house most prominently is my sister Karen (remembered here), who suffered with Lennox-Gastaut Syndrome (LGS) her entire life. LGS is not really a single disease, but a syndrome characterized by childhood onset of multiple kinds of intractable seizures with a slow spike-and-wave EEG pattern. It is almost always accompanied by intellectual disability, and often other developmental disabilities. It has multiple genetic and some non-genetic causes, each of which should probably be considered a distinct disease, and it is often thought that the characteristic slow spike-and-wave EEG pattern is a result of the cumulative damage to the brain of frequent seizures. My sister did not actually get the LGS label until she was 54; when I was growing up the diagnosis was simply “epilepsy with mental retardation of unknown cause”.
We now prefer the term “intellectual disability” to “mental retardation” since even back in the 1960s and probably well before, “retard” was a common playground insult (like “queer” or “faggot”, but more generally applied). Not unlike queer folk, until the 1960s-1970s, intellectually disabled children were largely closeted, hidden away from the public and often institutionalized. Back then my parents were members of the National Association for Retarded Children, an advocacy group for the rights of those with intellectual and developmental disabilities (IDD), which changed its name to The ARC in 1992 to drop the demeaning “retarded” label. More about The ARC in a moment.
Pride in the Park
Yesterday I stopped in at Pride in the Park, a queer community celebration of music and other arts in Volunteer Park, long the center of Pride events in Seattle before the annual march became so large that it moved to downtown, ending at the Seattle Center. Volunteer Park is on Capitol Hill, heart of the queer community in Seattle. It is one of the oldest parks in the city, predating by a decade the 1903 Olmsted plan for Seattle’s parks and boulevard system, and known first as Lake View Park, then as City Park, before it was renamed once again to honor the volunteers of the Spanish-American War. From its beginning it was home to a nursery, then from 1912 on, to the Olmsted-designed Volunteer Park Conservatory, which hosts collections of orchids, ferns, cycads, bromeliads, anthuriums, cacti, agaves, aloes, and other treasures. For Pride in the Park, the Friends of the Conservatory offered free admission and hosted a drag queen story hour. They have upcoming events for Juneteenth and Trans-Pride. Probably not what the mostly women volunteers of the 1920s-1930s were expecting when they helped set up many of these plant collections.
The ARC
Among the community organizations I was not expecting to encounter at Pride in the Park was The ARC of King County, with a well-staffed booth of rainbow-adorned volunteers there to advocate for the rights of people with IDD, some of whom, no doubt, are queer. The ARC of King County actually began life as the Children’s Benevolent League in 1936, some 15 years before the inception of the National Association of Retarded Children. From their beginnings, both the King County and national organizations have worked to bring the IDD community out of the closet, to de-institutionalize them and make them full members of their communities. The ARC was the first organization to raise money for research into IDD, worked with other organizations to create Medicare and Medicaid, helped reveal the dangers of lead poisoning, helped create an SSI program to provide income for people with severe disabilities, funded research into Fetal Alcohol Syndrome, advocated for protected status for people with disabilities in housing and for the Americans with Disabilities Act, has worked to guarantee educational access for IDD children and allow their access to higher education, advocated for the ACA, works to involve people with IDD in self-advocacy, and currently advocates for Rosa’s law, which will replace “mental retardation” with “intellectual disability” in federal policy. I let my membership in The ARC lapse some years before my sister died, so it was good to be reminded that I might want to renew my contributions to this outstanding civil rights organization focused on one of the most marginalized and still significantly invisible communities in our country, including their queer members and now reaching out to their queer family members and friends.
The civil rights movement, begun perhaps in the Bill of Rights, launched in earnest by the abolitionists and suffragettes of the 19th century, and continuing relentlessly today as we fight to keep the progress we have made and move further, encompasses all of us, and bringing our marginalized communities together is key to actualizing the vision of equal protection and due process embedded in the much beleaguered 14th amendment. Thanks to The ARC of King County, Seattle Pride, and Friends of the Conservatory, to name a few, for exceeding my expectations in making connections and moving civil rights forward. You lift my spirits.