J., I understand you a little bit better

I saw an example of stigma while growing up.  My neighbor, J., was an elderly woman in her seventies when my family moved into the town she lived in.  I was 16 at the time and just learning how to drive my family’s stick shift.  (You can imagine what a joy it was to ride with me.)  

J. lived by herself in a house about a mile from my family.  She didn’t own the house she lived in.  It had belonged to her brother who sold it to a doctor before he died.  The brother had retained “living rights” for J. to live there until she died.  J. never had a job.  I don’t know what she did for money.  I guess she got a little money from the government.  She did have a telephone.

J. didn’t have a car, and we lived out in the country.  There was no public transportation.  Whenever she needed to go to the store she had to call up her neighbors to ask them to give her a ride.  People didn’t like to give J. a ride because she smelled bad, she had snuff in the corners of her mouth, and her clothes were always raggedy.  Although J. had no immediate family, she had a lot of cousins who lived nearby.  They must have helped her out some (for example she had wood for her wood stove) but I don’t remember her talking about her cousins helping out.  She talked a lot about how people didn’t like her.

Anyway, since I was young and needed spending money, I would agree to drive J. to the store. (Looking back, she must have been pretty desperate to ask me considering my tendency to “dump the clutch.”) This was in the day before a lot of cars had air conditioning.  So trips to the store with J. automatically involved rolling down the windows no matter what the weather.  Summer time was the worst because the heat made the smell stronger.  It was kind of a mixture of B.O., tobacco, and excrement.  I don’t know whether her house had a flushable toilet.  I don’t think it did.  If she had running water, I “highly” doubt that she had a hot water heater.  That, in part, might explain the lack of bathing.

I’d drive her to the store to get some tobacco and ice cream.  She paid me $2.00.  I remember thinking that she didn’t eat very healthily.  I don’t know what she told me that she ate, but I do remember at age 16 thinking “That’s not healthy.”   She said that most food didn’t taste good to her.  “Meals on Wheels” hadn’t been invented then.  And it still doesn’t exist in my home town.  You’d have to move about 90 miles away to find the nearest “Meals on Wheels.”

Nobody called the police or the health department to get J. any help.  I guess that was an example of “Direct Discrimination.”  I don’t think we intended to “discriminate” against her.  We just knew we didn’t want to be around her.  She smelled bad, and she acted different from most people.  Okay, I’ll be truthful.  We called her “crazy.”  At the time that was acceptable. 

Thinking back on her living conditions, e.g., no inside toilet, no water heater, wood stove, no A/C, lack of accessibility to stores, etc., I think that was an example of “Structural Discrimination.”  She lived at the end of a dirt road about ½ mile long that was behind a hill.  When people drove down the road, they never saw her house, so they didn’t have the occasion to think about her. I don’t know which came first:  the isolation or her mental illness.

I don’t know what her diagnosis was.  She told me that she “changed” after a near miss accident.  She was riding down the road with her brother and a neighbor in his truck when she was in her 30’s.  She was sitting on the passenger’s side next to the door.  (Once again, this was in the “old days.”)  She wasn’t wearing a seat belt.  Somehow, her door came open, and she pitched headlong towards the road.  Her brother grabbed her by the ankle and saved her life, but only after she had “dangled” out the door for a while.  She thought she was going to die.  She said she never was the same after that incident.  (I don’t think anybody would be.)  

Lastly, I’ll talk about “Internalized Discrimination.”  Once J. and I were talking about an argument that she’d had with another one of the neighbors.  There had been some angry words between them, and J. hadn’t defended herself against the neighbor’s insults.  I remember her saying something like “Well, I guess that’s because I’m a yella-bellied coward.”  (Only she used words much worse than that.)  That phrase really disturbed me at the time.  It still disturbs me even now when I think about it.  Back then I didn’t know what self-esteem, or self-advocacy were.  I know a little bit about those terms now, but I still don’t know whether I could teach someone to have them.  How would you go about doing that?

When researching for this blog, I searched for “successful end to stigma” and “ways to end stigma.”  I thought if I could find something that worked for other illnesses, I’d recommend its use for mental illness.  I tried to think of illnesses that used to be very stigmatized but were not stigmatized as much now.  I thought of leprosy, epilepsy, and AIDS.   

A World Health Organization article has ideas for stopping leprosy stigma.  (See 
http://www.who.int/mediacentre/news/releases/2003/pr7/en/index.html   )


The Epilepsy Foundation gives approaches for stopping epilepsy stigmas. (See http://www.epilepsyfoundation.org/livingwithepilepsy/parentsandcaregivers/parents/helpingothersunderstand/fightingstigma.cfm  ) 

The International Council for Nurses recommends several ways to stop AIDS stigma.  (See http://www.icn.ch/publications/2003-nurses-fighting-aids-stigma-caring-for-all/  )

Lastly, the May Clinic recommends these approaches to stop the stigma of mental illness.  (See 

http://www.mayoclinic.com/health/mental-health/MH00076/NSECTIONGROUP=2  )

• “Get treatment.
• Don't let stigma create self-doubt and shame.
• Don't isolate yourself;
• Don't equate yourself with your illness;
• Join a support group.
• Get help at school.
• Speak out against stigma.”

If I had to quote the “stigma busters” for each of these 4 web-sites (Leprosy, Epilepsy, AIDS, and Mental Health,) I’d say:

• ·         “Expensive and separate programs have been shown to be the wrong approach”
• ·         “The more you and your child learn about it and help to educate others, the better you will be able to fight stigma and discrimination.”
• ·         “Stigma and discrimination block the march forward…creating a culture of secrecy, silence, ignorance, blame, shame and victimization. . To stop prejudice speak openly about the facts.”
• ·         “Speak out against stigma.”

Why treat Mental Illness differently than any other illness?  All 4 of these web-sites have 2 common threads: educate yourself and speak out.  I believe an OTA could teach someone how to do that.