Friday, November 6, 2015

Trendy new accessories: wheelchairs

Chloe (see image below)
It seems we need to reign in our compassion when we see somebody who appears to be disabled. There are imposters lurking out there. Yes, genuine, healthy wannabe disabled.

What alerted me to their existence last week was the "Envy" segment of Morgan Spurlock's documentary series, Seven Deadly Sins. One of those profiled was a man who  craves disability so badly that he spends many hours in a wheelchair for the fun of it!

The show reminded me of a documentary I watched a few years ago about people consumed with the desire for limb amputation. Some of those who fail to locate an MD willing to oblige them (naturally, that's most) resort to DIY amputations.

And lo and behold, a simple Google taught me that the subjects of both  documentaries are actually categorized together as sufferers of the same condition which has acquired not one but three official names: Body Integrity Identity Disorder or BIID; "Amputee Identity Disorder" or "Transability".

Dr. Michael First, the research psychiatrist at Columbia University in New York who coined the name BIID, said he estimates that there are thousands of people in the United States suffering quietly with it. Of his two current patients in New York City, one uses a wheelchair full-time and the other uses it at home in secret. Neither physically lacks the use of their legs.

First has studied 52 subjects who yearn to be amputees and 53 who want other disabilities including spinal injuries, blindness and deafness.

"The phenomenon starts in childhood in almost all cases," he said. "They go through life feeling chronically uncomfortable, miserable. The way that they should be is not the way that they actually are."

I realize that in this age of acceptance and inclusion - about which I'm generally passionate - these suffering folks shouldn't be criticized. My heart should overflow with compassion and understanding for them. I should share their joy when they finally sit in a wheelchair or don braces for the first time.

Here's one woman's memory of her first moments in a wheelchair:
"I was filled with this unbelievable joy. A feeling of completeness, of rightness, of relief. I felt, rather than heard, a door slamming behind me, the lock turning, no going back now... I couldn't stop smiling. In fact I had a huge, idiot grin on my face."
The same Chloe, hiking in May this year. She wears leg braces and uses a wheelchair, even though her legs are healthy. The Cambridge graduate believes both of her legs do not belong to her and dreams of being paralysed from the waist down.
But, to be honest, I'm finding it impossible to dredge up empathetic sentiments. Instead "Shame on you! Appreciate what you're blessed with!" springs to mind along with a few harsher words.

And I'm not alone. Many people with disabilities, along with transgenders (since the BIID'ers align themselves with them), are incensed.

Some researchers, however, believe that these people are not mentally ill but neurologically impaired. A 2005 study of two men who desired leg amputations found that they actually showed abnormal brain scans when researchers pricked their skin below the imaginary line of desired amputation. Researchers at the University of California in San Diego concluded that it could be a problem with the right parietal lobe which is responsible for mapping the body.

I doubt that this disorder existed a few short decades ago. Is it a sign of progress? Is the push to make disability more visible and accepted the root cause of this? Has our activism wrought this perversion?


Elizabeth said...

I don't even know what to say, so I'll say nothing.

Erin said...

I too want to feel compassion for what has to be mental or neurological illness, but good lord, Chloe Jennings-White in particular enrages me. This is a woman who unbinds herself to go hiking or skiing. How nice.

It's hard to know what to say when the anger is so deep. I read about people with BIID and there's a lump in my throat. They think their limbs feel foreign, and yet they haven't felt how agonizingly foreign a paralyzed or dystonic limb is. I have dreams where my body parts are replaced by someone else's, and those dreams are awesome. I would love to go hiking on Chloe Jennings-White's functional legs.

The Sound of the Silent said...

Erin, thank you for sharing your reaction to this phenomenon. It is important for the rest of us to be aware of its impact on those who are forced to sit in wheelchairs and who dream of being able-bodied. We've had enough of all this bending-over-backwards to excuse and sympathize with this behavior. And perhaps exposure to your heart-wrenching message will "cure" the BIID "sufferers".