Showing posts with label media. Show all posts
Showing posts with label media. Show all posts

19 May 2008

Church Files Restraining Order Against 13-Year-Old Boy With Autism


I am feeling sickened by this article on ABC News, about a 13 year old boy named Adam Race. The article is well-written and provides a balanced view of the issue. Adam has autism. He is also a big lad-six feet tall and 220 pounds. His family of seven attends Catholic church services every Sunday. They sit in the last row or the "cry room" (I guess this is where you take your crying baby during services). They leave during the last song so that they don't have any contact with others. Despite all this, the head priest at their Bertha, Minnesota church has filed a restraining order against Adam which proclaims that he may not enter the church.

Let's look at the facts. The church claims: Adam spits, "struck a child", urinates in church (excluding someone due to an incontinence problem is outlandish, not to mention very hurtful), fights when he is restrained, his parents "tie him up and sit on him", and he "assaulted a girl by pulling her onto his lap and, during Easter mass, ran to the parking lot and got into two vehicles, starting them and revving the engine." In response, his parents claim that he doesn't spit. They stated that soft fabric restraints, the sound of a car's engine, and the weight of someone sitting on him help to calm Adam down. His "urinating in church" is a bladder control issue, similar to young children, the elderly, and some people with disabilities.

To me it sounds like Adam is a boy whose family want to worship together and are willing to adapt their routine to make it possible. Sitting with the rest of the parishioners isn't feasible because that is uncomfortable for Adam and disruptive to the service. Sitting in the back may not be the answer either.

It is 100% true that the church cannot condone an unsafe environment for its worshipers, especially children and the elderly. That being said, I think that people fear autism because they don't understand it. Do some autistic people use physical aggression? Yes. Do some not-autistic people use physical aggression? Yes! The fact of his size and the fact of his disability should not automatically equal a year-long legal ban from church. He has not in fact hurt anyone at his church.

In addition, there are hundreds of things the family and the church could try to create a safe and comfortable environment for all. For example: there is a room to take crying babies where people can continue to follow the service. Have another room ready for Adam and his parents when he cannot stay in the main area of worship. Maybe Adam could have a buddy, a big high school football player to volunteer to help supervise him. Maybe Adam's religious leaders could extend themselves to his family to help them get the resources they need to help Adam with his behavior. I could go on brainstorming all day! Rather than work with this boy and his family, the church (which this boy has attended ALL OF HIS LIFE) has taken legal measures to exclude him.

The ADA probably factors in here at some point, but even before that, shouldn't a religious leader be able to extend a little bit of COMMON HUMAN DECENCY to this boy? Shame on you, Reverend Daniel Walz.

The NCPD and CAPD are two groups that provide information relating to Catholicism and disability. There are many resources these priests could have gone to for guidance.
Darcee at Simply Catholic, parent of a child with autism, lists some resources for parents and religious leaders about embracing people with disabilities in religion. Here's her take on this story. Other religions have similar resources that are particular to their practices--google it!

What's your take on this story?

(Note: I am not a Catholic, but I am religious and I strongly believe that individuals with cognitive disabilities should have the freedom to participate in a religious community however they choose. My own house of worship offers all religious services for free online via live webcam, which is beneficial for people with illness or disability that limits their travel.)

14 May 2008

Medically Fragile Kids Aging Out of Care


Today an article appears in the NY Times entitled "For the Disabled, Age 18 Brings Difficult Choices."

I thought the topic of the article was very interesting, and important to bring to light. The piece was about very medically fragile children with multiple health issues and/or disabilities who live in rehab/palliative/chronic care children's hospitals. At age 18, the kids 'age out' and have to move to a different facility. The issue raised in the article was that, with few exceptions, the only place for them to go is a nursing home. These teens feel isolated and out of place surrounded by elderly folks. The article also mentioned that this is a new problem because new medical technology has enabled these fragile kids to reach adulthood.

If you've ever visited a children's hospital that is set up for long-term residents, you know that it is a special place. One I visited near San Francisco had murals painted down every hallway and in every room. The one profiled in the article has a huge game room and a school-style cafeteria. It's set up to nurture kids medically, physically, socially, and emotionally.

The photographer for the piece did a wonderful job of capturing beautiful shots of these kids and young adults in and out of the hospital. The photographer also followed a featured young man with multiple disabilities around on a typical day, capturing him doing everyday things. The photos were not taken in a beautiful place, but I think that the images themselves radiate beauty. Good on ya, Nicole Bengiveno, New York Times photographer!

To me, the article really left something to be desired. It profiled a young man named Sam, who has a brain injury from a bout of meningitis. The piece says that he has
"...only limited use of his hands. He cannot communicate by speaking, but seems fully aware of his surroundings, smiling when happy and able to slap high five."

OK, he smiles and gives a high five. Great. But one of the photos shows him flashing the "ILY" (I love you), and the caption states that he uses sign language! What the heck, NY Times? Sign language is good enough for thousands of Americans, but not for you? I feel like they should have slightly more knowledgeable reporters. To me this seems like cultural ignorance and ignorance of disabilities and disability issues. I can picture the author's next piece: "Renowned physicist Stephen Hawking has only limited use of his hands. He cannot communicate by speaking, but seems fully aware of his surroundings, smiling when happy, and yet not at all able to slap high five." Sigh.

The other thing that rubbed me the wrong way was this: One photo showed a table full of teenagers with various disabilities sitting around a lunch table laughing at a shared joke and eating, but nowhere in the article do they ask a young adult their opinion about aging out of the children's hospital. HUNDREDS of kids in the program and none of them could be asked to give a quote? Instead the piece talks to the parents and doctors involved in their care.

A story about minority health issues that doesn't mention the opinions or quotes of that minority? Ridiculous, and yet here it is. I think the word I'm looking for is paternalism.

I give this story a C+, and I give the photos an A+.

I
mage: Cartoon line drawing of a boy in a wheelchair, grinning and pushing wildly so his hair flies out behind him.

ETA: badcripple has another interesting look at this article on his blog.