June 1, Crystal and Bruce have an Opinion Piece Lexington Herald-Leader
The Lexington Herald-Leader
Exiles in their own neighborhoods
Reach out to relieve isolation of disability
By Crystal Bader and Bruce Burris At issue
May 14 Herald-Leader news article, "Autistic man died afterpolice cuffed him; that case, another being investigated"
We are familiar with the tragic incident this past April in which Roland Campbell, a young man diagnosed with autism, died while being restrained by police.
While his case is under investigation, it is worth examining an overlooked component to this story. In the media and in chat rooms, Campbell's home is variously referred to as "group home," "residential facility" and a "halfway house."
One Herald-Leader writer describes it thusly, "The program allows people with intellectual or developmental disabilities to receive care in a homelike setting, rather than an institution,"
Though this statement is not inaccurate, how many of us really know what a "homelike setting" means within this context? Is it more or less like the home that we hopefully enjoy? The answer for most of us is that we simply do not know.
An example may be found within a featured segment from WKYT: "Few people seemed to know the residents of the home ... but several neighbors said they often see special-needs buses picking up and dropping off disabled adults. 'They pretty much keep to themselves. I think it's some type of group home,' said one neighbor."
Ten years ago, we addressed this issue in collaboration with a number of agencies that provide residential services in an art installation/performance at the Louisville Visual Art Association called "Group Home." Residents of group homes (current lingo is "residential facilities") were encouraged to explore their lives and their concept of home.
Through photos, writing, artwork and performance, residents alluded to a stark and isolating experience. Sadly, after 10 years, we are here to say very little has changed.
Forty years ago, deinstitutionalization was an enormous step in the right direction, but we have faltered in the goal of establishing a reasonable place for people within their own communities.
It is high time to articulate a plan to empower people with disabilities, and those of us who support them, with the potential to act as contributing citizens instead of isolates.
Well-meaning Kentuckians in various human-service capacities have developed policies over the years intended to aid in this community building.
However, the fact remains that most of what has been created consists primarily of an ever-expanding mound of paper which often serves to hinder direct-care providers in their attempts at creating more inclusive environments.
These mandates are punitive in their insistence that providers impose whatever is viewed by a few professionals as current "best practices" — residue from a dreary cycle of conferences, studies, seminars, symposiums, workshops, surveys and trainings.
We wonder why it seems so difficult to treat neighbors as neighbors. How hard is it to throw a pot-luck for the family next door, plant a garden or attend an occasional neighborhood association meeting?
We all bear responsibility here. What we see in this story is that an utter lack of community inclusion is the norm. Perhaps if ordinary interactions occurred on occasion between Campbell and his neighbors, they might at least be holding a memorial service in memory of a cherished community member, versus questioning the unsettling death of the mysterious disabled man who lived among them.
Crystal Bader and Bruce Burris are co-owners of Latitude Artist Community, a Lexington program serving people with disabilities.
