Guest Blogger: William L. Alton on Stigma

Listen to this post read by William L. Alton; introduction by Cheryl: 

Just as I put the finishing touches on the PSA, “Your Daily Dosage of Inspiration,” my dear friend, Bill Alton, was being put through the ringer because of his disabilities. The PSA is a satire about how some people expect disabled folks to accomplish very little in life other than making us all feel better about ourselves for not being “as bad off as her!”

Peter Altenberg portrait by Gustav Jagerspacher watercolour and pastel applied wet on woven cream paper applied to board. It shows a man in a tweed cape, looking nervous. He is balding with an overgrown reddish mustache. He grips a hat with long, slender fingers. He is in front of a dark blue, speckled and textured wall with a sign for the Apollo variety theatre behind his head. [Photo Courtesy of the Neue Galerie, New York from the Wellcome Collection. Found at www.wellcomecollection.org]

The flip side is when people expect you accomplish too much because they don’t believe your disability is real, as often happens with mental illness and brain injury. When Bill advocated for himself he was ignored and belittled. Bill and I and many others put great effort into passing as non-disabled, otherwise known as “normal.” The irony is when we advocate for our needs, people don’t believe us because we don’t appear to be in as much need as we say we are. The more effort Bill and I put into behaving appropriately in public, the fewer resources we have to actually continue to behave appropriately. I know I get loud and repetitive, and my right leg kicks involuntarily when I’ve been working too hard to be polite and appropriate. I also tend to have temper tantrums once I get home if I’ve really been holding it together out there. We both get really worn out by it, and then we need more support. Ironic.

Here is Bill’s recent story:

“My disabilities are invisible. I do not walk with a cane or walker. I am not blind or deaf. I do not use a wheelchair. My disabilities are psychiatric and neurological. I live with unreasonable fear and thoughts of suicide all of the time. I hear voices and see things that aren’t there. I have trouble leaving my apartment. I sometimes panic to the point of vomiting.

The other day I spoke with my case manager and she told me to go to the hospital. The hospital that takes my insurance in on the far side of town. It take three hours to get there on public transit. I was having on going, severe panic attacks. I was convinced that there were people after me intent on doing me harm. I got the bus and rode for fifteen miles to the next town over, but I had to get off twice because I was puking. I called my case manager again and she told me to dial 911. I did.

The cops were the first on the scene. They always send the cops in first on psych calls. The cops searched me, searched my bag, told I should call a cab. I had no money so I couldn’t call a cab, but the cop kept telling me I didn’t need an ambulance. After a while the medical people from the fire department showed up and they told me to either suck it up and ride the remaining two and a half hours on the bus or to call a cab. I told them that my case manager told me to call for ambulance.

The ambulance people showed up and we all talked and a second cop searched me again as if I’d managed to hide something from the first. The ambulance people and the fire department folks talked and next thing I know I’m being loaded into the ambulance. The paramedic working on me said that I was abusing the system. I was fully capable of riding public transit or calling a cab. She told me that if someone with a real medical problem called, they could die because I’d taken the ambulance out of circulation for nothing more than taxi service. She said any tragedy that happened would be my fault.

I just nodded and sat silently. My case manager thought it enough of an emergency to have me call, but the paramedics and the cops and the fire department folks all thought I was perfectly healthy. I nearly got out of the ambulance and went home. I was worthless here. I was a drain on the world’s resources. These are all things I’ve been thinking anyway and the act of calling for help was almost more than I could handle. I found myself trapped in the back of an ambulance with adversarial and judgmental people. I apologized and avoided conversation for the whole trip. My suicidal thoughts, my desire to do something harmful and permanent to myself swelled and filled me with white noise and visions of blood and muscle.

When we got to the emergency room, I told the nurse and kind of shrugged and let pass. I don’t know what to do. I don’t know how to combat the stigma of mental health when it slaps in the face. Most people I know understand that there just some things I can’t do and that there are times when I’m paralyzed with hallucinations, panic and delusions. I guess my only other option would have been to allow the police to take me to a nearer hospital, where I would have racked up nearly $1000 in co-pays. And the cops always handcuff you. It doesn’t matter if you’ve broken the law or not. They cuff and steal your dignity and expect you to behave yourself with they treat you like some kind of dangerous criminal. I can’t do that. Next time, I’ll figure out some other way to the hospital. Next time, I’ll force myself to conform to the rules of the world. God knows, I can’t expect understanding from the medical professionals, because since they can’t see my disability, it must not exist.”

Are you facing this too, gentle readers?