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D̶i̶s̶-Abled

Some of you may have caught my recent Facebook post where I implored local haunt-enthusiasts to please skip Pennhurst Asylum’s haunted attraction.

Pennhurst lacks no evidence of its otherworldly activity. The weight of sadness that patrons experience can be overwhelming. Countless “ghost hunts” have taken place on the historical premises, documenting thousands of events. And long before the facility closed its original operations, this heartbreaking documentary was filmed:

In this article by the Inquirer, you can see a detailed account of just a fraction of the institution’s horrifying history. Not that long ago in our history, persons who were deemed “less than” were stowed in facilities like this. They were considered an embarrassment, a burden, and not fit for society. Parents were encouraged to place disabled children in homes where they would be appropriately cared for. However, that was rarely the case. Facilities were dramatically overcrowded, understaffed and what staff was present was poorly equipped to care for anyone, let alone medically complicated patients. Doctors routinely performed experiments. Patients could be restrained constantly.

credit: thehorrormoviesblog.com

Some of the articles state that patrons of the haunted house attraction aren’t put off by it because the “atrocities didn’t happen in the areas they’re walking through.” That’s like saying its ok to be disrespectful in a courtyard of Auschwitz because the atrocities didn’t happen right in that area!

Pennhurst and other “schools” and “homes” for disabled, criminally insane, mentally unfit, and the like, speckle the history books with an embarrassing history of mistreatment. Mental health is a waning taboo in 2019, but is still a touchy topic that requires sensitivity. The real issue at hand is that there is someone capitalizing on this mistreatment. I won’t sit here and be some ridiculous mouthpiece for reparations or some other penance. A preserved, respectful memorial to those who were mistreated and lost their lives would be well more than enough.

Credit: Antiquity Echoes

In the discussion the other week, it was mentioned that, despite astronomical profits topping over a million dollars a year, none of it was donated to further services for the disabled. When facilities like Pennhurst began to close due to understaffing, overcrowding, and general misuse, the burden was again placed on the families, with little support offered. My own family has benefited from Early Intervention and Intermediate Unit services, but it doesn’t truly offset the heavy responsibility of caring for a child with any type of disability. Since I worked from home, I was not eligible for any type of respite care – one would think that a mother who is solely responsible for a child 24/7 would be the first to qualify for a break, no? Apparently not. Childcare services require you to be below the poverty line. Daycare’s require one-on-one aides that you have to conjure up (good luck with that; we are still waiting 5 months later). Leaving your child with someone requires an inordinate amount of trust in someone to understand your barely-verbal child. Friends who’s children have meltdowns and outbursts require caretakers who have mountains of patience and who are equipped to handle these incidents. Institutionalizing my son would have absolutely never been an option for me, but I can certainly understand the societal pressure to do so.

Now, all of that said, if the current owners of the Pennhurst grounds were to donate at least a large portion of their profits to improving services for the type of patients Pennhurst once housed, I could stomach the profiting off this tragic era much better. It still wouldn’t sit completely right with me, but I would feel better knowing that perhaps the entire state of Pennsylvania’s special needs care system would fare much better, as a tribute to its tragic history.

More reading on Pennhurst Asylum:

Pennhurst Memorial and Preservation Alliance

NPR: Haunted House Has Painful Past as Asylum

Philadelphia Inquirer: Thrills or exploitation? Pennhurst Asylum open for haunting season

Trigger warning on this article, but very well written piece by someone on the spectrum: PAranormal (and True) Crime

A&E To Premiere Record-Breaking Special On Pennhurst Asylum

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Some “Rules” are Meant to be Broken

Recently, I was made aware that a local school district is using the juvenile novel Rules as required reading for the third grade classes to raise awareness about autism. Of course, being the advocate and mom that I am, I needed to get a copy and find out why there was such an uproar. People were posting horrifying snippets from the book that are anything but tolerant, accepting or aware.

“I study the hair on the top of his head. How can his outside look so normal and his inside be so broken? Like an apple, perfect on the outside, but mushy brown at the first bite.”

Rules, by Cynthia Lord

This is the protagonist, Catherine, referring to her eight-year-old autistic brother. Her brother is not severely autistic, by any stretch. He speaks clearly, can tell time and do higher functioning math than I certainly can, functions fairly normally, but enjoys many of the quirky things that most kids on the spectrum enjoy – repetition, stimming, routine.

Rules by Cynthia Lord is an eloquently written book, with beautiful, flowing imagery. Its brought to life by a vibrant, talented twelve-year-old, Catherine. My impression within just a few pages was that she is very bitter young woman. She’s expected to take on a lot of responsibility with a younger sibling who requires a lot of attention and understanding. The responsibility of a child on the spectrum can be daunting for a grown adult, hence why we witnessed atrocities with “different” children being abandoned for so many decades prior.

Several passages through the book disturbed me, as a mom of a quirky little guy. However, I do give Lord credit for some passages that I related to, deeply. Moments where you see the unbridled beauty of the autistic mind; moments where you don’t think you could possibly ever understand how he’s thinking; moments where you just want to take it all away, and just have “normal.” There’s so much about my son that would still be him without the hinderance of developmental delays. If I took away his inability to understand others and express himself, he would still be Nicholas, he’d just struggle a lot less day to day. He’d still be my quirky goofball, sensitive, hilarious, adorable.

Through David’s occupational therapy (OT) sessions, Catherine happens to meet a young man named Jason (I’m making some assumptions on his age – she guesses he’s older than her, but its never stated), presumably with cerebral palsy. Its never clarified why he’s in a wheelchair or needs his communication book, but he’s clearly “different.” Catherine has a hard time embracing it. She’s definitely embarrassed to have befriended this delightful young man, and it arises several times during the book. She makes efforts to conceal how David and Jason “are,” as though they’re defective. I am pleased to say that by the end of the book, she seems to make peace with both David and Jason being different, but the end is barely the tip of that iceberg.

However, my biggest concern is that all but the last few pages are her utterly bitter, angry, pre-teen angst combined with overwhelming responsibility, and a major lack of awareness and understanding, coming from Catherine and the kids in the neighborhood. Instead of spending the majority of the book “normalizing” or heck, just accepting the not-normal, the book spent almost the entire length avoiding the topic. Instead of Catherine stepping up and making it “ok” to be different, she literally spends all but the last few pages being deeply embarrassed by both boys. A neighborhood boy is downright cruel to David and then proceeds to attempt to influence Catherine’s new neighbor to do the same. Fortunately, the new neighbor, Kristi, has her own issues with her parents being separated, and is bewildered by David enough to not form a clear opinion on the topic. She is the most flexible character in the book, knowing she’d like to make friends, but also clearly destined to be one of the popular girls, once school starts again in the fall, regardless. Kristi seems to be open minded but not given guidance on how to approach David or Jason.

This is an important part that Lord failed to capitalize on, in my opinion. So much of her story was focused on how the parents were truly failing both kids that she took no time developing the tolerance and acceptance lesson that could have been threaded through the entire book. There is no sequel that I am aware of – another major missed opportunity. By the end of the book, Catherine had developed an “it’s OK” attitude, but it took nearly 200 pages for her to arrive there. Her father finally stepped up to take care of her brother in the last few pages. She finally enjoyed her friendship with Jason without feeling embarrassed that he’s in a wheelchair or different. She was finally thinking positively about her brother. But these are all missed opportunities to teach and learn true acceptance.

Lord’s writing style is beautiful, to be perfectly honest. I would enjoy reading just about anything by her, even as an adult. It took me back to my childhood, when I consumed books voraciously, and lived vicariously through characters who had exciting, interesting lives. I’m disappointed in her overall message of the book, as I feel she could have done a more extensive job, but in general, not a horrible book. I am, however concerned that school districts are trying to use this book for any type of awareness or acceptance, because I feel it desperately misses the mark. This might be excellent for someone who is experiencing autism from Catherine’s perspective, but it will hardly be helpful for someone who is experiencing it from a distance and already doesn’t know how to relate!

Let me hear what you think! Have you read this book?

Much Love

~ Jess