Today on WGBH

Okay - I realize that this isn't a cute picture of Caroline. These will come later. I have written letters about this in the past and what we saw on TV today really got me thinking. Anyways - it's my blog and I can say what I want, right? Most people that will be reading this know my views already. But here goes:

Jim was channel surfing today and came across this program on our local PBS station. Fernald has been in the news a lot lately, with the judge's decision coming through supporting the Dept of Mental Retardation decision to close the facility.

I understand that Fernald has a history of being a pretty awful place and some terrible things have happened there. People had not been treated humanely and lives were ruined. That is not the case anymore, though. There are less than 200 residents now (down from thousands) and no new residents have been admitted since 1978 (or thereabouts). The residents that are there have profound mental retardation and severe physical disabilities. We're talking IQ levels of 25 and under. Most of these people have been institutionalized for most, if not their entire lives. I fear that pulling these people from the Center and thrusting them into the community would be a death sentence for them. Many of these residents require 24 hour nursing. They have tracheotomies, g-tubes and j-tubes, require chest PT treatments, need hourly repositioning with devices made especially for them, have to have custom wheelchairs and frequent range of motion exercises so that their joint contractures remain stable (or at least progress more slowly). I see plently of people with mental retardation that live in the community in my job at Fairlawn. NONE have been as involved as the people that I worked with at Fernald. While the care that I see people recieve in the community is adequate for their needs, these people don't require the same amount of care as the people at Fernald. Quite literally, many people from Fernald are so fragile that, if pulled from the caregivers that have known them and loved them for years, they will break and die.

I worked at the Fernald Center as a PT aide for 2 years while in college. I remember thinking "Why on earth did I ever put myself here?" the first few weeks I worked there. After being there, very few things surprise me now. I saw people whose heads were as big as watermelons and those that had skulls little bigger than a softball. There were people that had retardation as a result of abuse. Some had been neglected and locked in basements for years because it was not an acceptable thing to have a child with special needs in the 1950s and 60s. Many had significant mental illness in addition to their cognitive limitations. People are still labelled as "Mongolian Idiots" and "Feeble Minded". Some people had diagnoses that were so rare that scholarly articles were written just about them. I remember going through textbooks (and even though the eyes were blanked out for "anonymity purposes") knowing the people in the pictures because they were residents.

One of the most astounding things to me that I learned about Fernald is that there is a cemetary on campus where residents were buried in the earlier days of operation. There are grave markers, but many of the markers don't have names. People are buried by number. They weren't seen as deserving enough to have their name put on their final resting place.

Working at Fernald was the hardest paying job I ever had. But it was also the best job I ever had. The work was very physical - transferring people, performing hygeine tasks, doing chest PT, helping to make wheelchairs and positioners. But the best part was the residents. Before I worked there I saw "retarded people". Now I just see people. People that have special needs, but people. They are capable of emotions and communication and, most importantly, of love.

I realize that Mr Romney's decision to close Fernald is an economic one. Frankly, the land alone is worth millions of dollars. And yes, it is cheaper for people with physical and mental disabilities to live in the community. For some people, this is absolutely the best option. But not for the majority of people left at Fernald. Some people just can't be in the community. It isn't safe - some for their own good and some for the safety of the community that they live in.

As a society, we will be judged by how we care for the least of those among us. The people at Fernald are this. They deserve to live their lives in a setting that gives them with the oppourtunities, the care and the love that they need. If they already live in a place that provides that, why put them in a setting that won't?