Monday, January 12, 2009

Good Grief

I am not sure why this post is centered. I cannot seem to get it aligned left. I'm just too tired to try to figure it out now. Maybe later.

In the comic strip Peanuts, the characters always say “Good Grief.” I never really understood the term “Good Grief.” Grieving makes us feel just crappy. Our eyes leak, our stomach hurts, and it is hard to concentrate on anything other than the grief.

I have had a lot of time to think about grief over the last two weeks. I dissected three kinds of grief that people with disabilities in particular have to deal with.

Pain in the Ass Grief

This is not “real” grief but makes one say “good grief”; but there is nothing good about it. It includes:

  • Zealots who want to pray over us and tell us that God will cure us, if we would practice their religion.
  • An inaccessible world
  • People who put their hands on your body or property.
  • A zillion other slings and arrows that come our way during our days on earth.

Coming to Terms with Disability Grief

It some time in life, a person with a disability has to come to terms with their specific disability. The people I know best, my husband, daughter and myself, have all gone through this kind of grief. However, I think this is, “good grief.” It helps us come to terms with our disabilities and accept them as a part of who we are; not an all-consuming aspect of our life. The process of grieving what ever we think we have lost, or never had, leads us to acceptance.

We can then acknowledge our own and other people’s oppression. This gives us the insight that we must fight for a decent standard of living – jobs, a love life, privacy, inclusion, housing, and all those other things worth organizing and fighting for.

Losing Friends and Activists Earlier Grief

We lose our friends with disabilities far to early in their lives than people without disabilities. People without disabilities live an average of 77.6 years. The average life expectancy of a person with a spinal cord injury is much lower.

People with Down syndrome live an average of 55.8 years,

While reasearching this issue I found that even people with learning disabilities tend to die earlier. I found the table below that shows the disparity.

Area of disparity

Example in learning disability

Increased mortality

Lower life expectancy

Increased morbidity

High levels of epilepsy, sensory impairment and behavioral disorder

Increase in negative

High levels of obesity and underweight; low employment; fewer social determinants of health connections and meaningful relationships

Access to services

Low rates of uptake of health promotion

Quality of services

High prescription rate of antipsychotic medication with no evidence of psychosis; high rates of unrecognized disease identified on health screening

Chalk sketch of woman holding her head in her hands. From: am shocked by these findings. It demonstrates how culture devalues our lives. Even people with invisible disabilities die earlier. The fact that most people with disabilities live close to the poverty line certainly does not help our access to adequate health care.

All this thought about grief comes because I learned that I a third friend/activist died in the last 12 days. Her name is Carol Kemp (nee: Danner) I’m selfishly lost in my grief for my friends. It is oppressive, and overwhelming.

When I vowed to write every day this month, I had no idea I would be writing about the death of three friends. I am grieving. The writing is not helping the grief, but at least I have a place to store it, to share it, and slowly come to terms with it. Nothing about this grief feels good.


Valerie Brew-Parrish said...

Cilla has written on the subject of grief and it is a topic that we people with disabilities don't discuss much yet it is an issue that permeates my heart and soul. My husband Rick is furious that the Chicago gimp schools didn't do a better job helping me and too many others deal with the overwhelming grief of losing our classmates,and friends who were more like family than our biological families. I still have nightmares about parents meeting the school bus to let us know that their child had died. The loud speaker in our classrooms made daily announcements of who had died. And, life went on. No fuss, no memorials, no time to grieve. We wondered who would be next and we wondered if we would be next. Stalked by the reaper of death, I cherish my friends. I still live in terror that those I love most will suddenly be taken from me. And, losing a fellow disability activist borders on unbearable. We are family, struggling for the same rights, and experiencing a lifetime of indignities most in other cultures never experience;like being told you're evil and being punished by a loving God and not having enough faith. I grieved when I read Cilla's tribute to JoAnn and Darrell. I saw them both at conferences and felt a kinship with them. I didn't know Carol. My friend, Tammy Allen, a little person, died Jan. 4. Rick befriended her when they worked in IN. and some of her co-workers were so unkind. Every day of her life she showed the world that she was a productive citizen. Like Cilla I am grieving too. It comforts me to know that all of our lost comrades in our disability community lived each day to the fullest. They persevered despite tremendous obstacles. They made the world better for others. They will be missed. Rest in Peace!

Big Noise said...

Thank you Val; your comments are comforting.