Thursday, January 23, 2014

Jan 23 International Day of Mourning and Memory for people w disabilities

Today is Wednesday January 23rd, 2014.  Please reflect, remember and celebrate the lives of people you may or may not have known who are gone..... people who had disabilities and perhaps left the world without much fanfare, love or even consideration.  Thanks to Dave Hingsburger this day is dedicated to mourn people with disabilities that have since left the earth.  Please read this segment from Dave's blog of a few years ago and learn all about this important and reverent day.  

There is a Facebook page also devoted to the cause. Please visit here.

Last year I posted this on my blog.  I am is such a great story and I want to retell it each year.

For many years I worked in an agency where we supported people who once lived in institutions.  They would come live with us, have a better and more meaningful life and often come to die of old age or associated stuff.... I have attended countless funerals for people who died living their lives in a modern group home versus dying inside a cold institution.  It was always an honor, a privilege and huge responsibility to ensure that the people had a send off and funerals that were just like those of people who did not experience institutional life.  As we know, many people died alone in institutions, with no name and more tragically no memorial other than a stone with a number if they were "lucky".

Anyway, at this agency where I worked, funerals, as sad as they were, represented a significant level of dignity and celebration.

Enter, 3 twenty year old Direct Support Professionals who made sure that Margaret had a really good and dignified send off. More about them in a moment.

Margaret was 95.  She lived 55 years in an institution. She lived 40 years in a group home. At the end of her life she was supported and loved by at least 30 DSPs, each a fraction of her age.  She died of natural causes and had a really good run!

Margaret had no family other than the one that was developed at the agency in which she lived the final 40 years of her life. The DSPs were her family.

When Margaret died there was a minimal amount of fanfare. She had a very typical and standard funeral except for one significant thing.  The priest who was "assigned" to her service (she was Catholic) was an itinerant priest and was mandated to preside/officiate her Mass. Well, he botched her name, did not talk at ALL about her and essentially he was an embarrassment.  After 95 years, I hope that the person responsible for introducing a soul to the next world will have a slight clue about that individual.  He did not.  THe DSPs who loved Margaret were really pissed off.
We had the Mass and were all left with a bad taste in our mouths.  The priest was clueless.  We all departed for the burial.

At the burial there is more stuff that takes place in Catholic rites. The priest did what he had to do. Frankly, it was pitiful.  Immediately prior to the burial and lowering of the casket into the ground, 3 Direct Support Professionals came to the graveside!!!! 

They demanded a eulogy.  They created one.....

Each one accounted in incredible and loving sharp detail the life of Margaret. For close to 30 minutes each of the DSPs with great emotion and love eulogized Margaret. They did this in such wonderful reverence and respect there was not a dry eye in the county. They knew everything about her.....her favorite foods, her dreams, her secrets, her passions.....These DSPs knew this woman as though they were her family.  Well, in fact....they were her family.  I was humbled, inspired and knew at that moment I was in the presence of holiness and love.  They knew her much more than an assigned itinerant priest.  Thank goodness.  Margaret was buried with love and respect thanks to these young DSPs.

As we think of people with disabilities this day let's also consider the tens of thousands of DSPs who ensure that the people they support die in a person-centered way.  Death is part of life. DSPs are a huge part of the dignified death of many people who would otherwise be given to eternity without a fair and loving send off.

Thank you DSPs for what you all do at the end of life as much as during it!