Martin and Albert New at Pennhurst, 1944.
In planning my trip to Philadelphia for Thanksgiving, I decided I needed to find out more about the institution where my great-uncle with Down’s Syndrome, Martin, lived for about 35 years; I needed closure and a larger context to interpret my family’s experience through.
I did some research on Pennhurst State School & Hospital – now abandoned and threatened by developers – and got in touch with the lawyer – David Ferleger – who carried the court case through to the end and the medical sociologist – Dr. James Conroy – who proved the closure was a good idea.
I had always conflated the deinstitutionalization of the intellectually disabled with that of the mentally ill; apparently, they were distinct phenomena in terms of the relative depth of advocacy for each group, the severity of social stigma surrounding each condition, and the public funding commitments made to their respective community integrations.
Why don't big institutions work? I asked. Human nature was, after years of inquiry into the structural inadequacies of our systems of care, the most reliable answer. (The other notorious example of failed social experiments in Pennsylvania is the Eastern State Penitentiary which was founded by a reform movement in the mid-1800s and influenced by Quaker values and traditions that encouraged rehabilitative practices that included – oddly – the frequent application of solitary confinement and restraints. The institution eventually fell prey to the pressures of overcrowding, violence, mismanagement – the usual). Pennhurst was built during the turn-of-the-century Progressive Era which put forth different but equally complicated reform principles – most of which I’m not yet informed about.
Ferleger showed me photographs. The most disturbing were the FBI shots: Half-naked bodies curled up along hallways, beds layered head to foot, communal showers arranged like troughs. I'd assumed concealing residents' faces with tiny stickers was standard legal procedure, but in fact no such procedure existed. Instead, it was shame – not about the living conditions but about the disabled.
Families of the residents of institutions were shielded from the worst. Many visitors took their family members out for a picnic, a walk around the grounds – away from the reality of daily life in the institution. When visitors did make an indoor visit, they were often shepherded to the day room, away from the living quarters. It’s been suggested that some families willfully shielded themselves from what they guessed could be a very upsetting discovery. Parents died assuming their kids would live out their lives safely in Pennhurst.
Martin was one of the first to leave Pennhurst; both men think this is because he his high- functioning won him favor with staff and administration (the state was supposed to be random in its decisions about who left when so as not to “cream” the highest-functioning residents off or dump the lowest-functioning out).
I still have questions about the "dual institutionalization" of residents and staff – that working conditions – staffing ratios, compensation, training – affect patient care. Organized labor – particularly education associations and health care workers unions – have used this argument for a long time, but I’m not sure how broadly it’s been applied to other situations. Some of the public employees unions fought the closing of Pennhurst – a state institutions – (AFSCME was a notable exception) and as predicted, most of the group homes were privatized (and, thus, much less likely to be union). Now, it seems, the choice for potential employees serving as residential staff is between the home and other minimum-wage work.
I’d always heard that Martin thrived after Pennhurst: He secured a job (though in a sheltered workshop), learned to use money and ride the bus, got a girlfriend, memorized the Phillies schedule, and lived to age 65 – way past life expectancy. The longitudinal study confirmed this. By measuring aspects of quality of life and characteristics of service provision, they found that the outcomes of the deinstitutionalization of Pennhurst and other similar institutions were overwhelmingly positive. I was able to see what his goals were, how he was progressing on them each year, how often he saw the doctor (he apparently had frequent seizures – not uncommon for someone with neurological problems, but unknown to my family), and more.
Because I have only vague memories of Martin (and no memories, frankly, that involve speaking with him) I was looking to fill in the holes – to recapture something I’d, in a sense, lost or never really had.
One of the last people moved out of Pennhurst was one of the first residents of the place in the early 1900s (and actually helped in the construction of the campus). A testament to the wonder of human potential, this 80-something year old developed more skills over the rest of his years than he had during his time at Pennhurst. This humbles me.
Dr. Conroy took my picture to file with Martin’s records as if to document the fact that Martin mattered to people – and that he has an important place in history. He also asserted that the progress that the US has made on this front makes him proud to be an American.
Ferleger, however, offered a more sober reflection: As long as there are people in need, the best intentions will always fall short.
A judge in one of the courts or the Lieutenant Governor or some other (conservative) official with power reversed his decision after a visit to the institution – it turns out his nephew had developmental disabilities; stories and relationships matter.
I asked the lawyer how he became interested in this work; he answered that his parents were Holocaust survivors – their experience as part of an institutionalized people planted deep seeds.
The Jewish view of redemption differs from the (roughly) Christian individual-salvation-by-Messiah idea. One way the concept is understood in Jewish theology is that God saves God’s people not from sin, but from exile. The Encyclopaedia Judaica offers a broader definition; it defines redemption as "salvation from the states or circumstances that destroy the value of human existence or human existence itself." If people were, in a sense, exiled to Pennhurst, was their return to community a redemptive act?
Dr. Conroy was the one who locked the doors of Pennhurst for the last time; he loaded two newly-freed residents into his car where a visiting student from Beijing waited. She cowered as they joined her in the back; she’d never seen anyone with intellectual disabilities up close because, as she explained, in her native China, “people like that were either killed young or locked up.”
We'd come a long way.