Wednesday, January 23, 2013

DSP Eulogies/ Jan 23rd Intl Day of Mourning pt 2

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! 

Tuesday, January 22, 2013

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

Please take a moment on Wednesday January 23rd, 2013 and 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 last year and learn all about this important and reverent day.  

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

Monday, January 21, 2013

It's a small world after all.

Thank you all for understanding my absence this past month or so.  I am back from Japan and back in action! 

This past week I visited North Carolina with Joe Macbeth and presented the NADSP Code of Ethics to a wonderful audience of 250 North Carolina DSPs!  They were all terrific and presented with very person-centered language and heartfelt commitment to people with disabilities.  Many agencies from all over the entire state of North Carolina sent direct support staff to enjoy a day of education, development and networking.  The North Carolina Council on Developmental Disabilities was one of the proud sponsors of the event and for more info on them, please see the link. 

Coming back to the United States from Asia is always a difficult transition for me.  However, this return was sweet and going to the great state of North Carolina as the first gig of 2013 and as my first experience back in the saddle in my country was very meaningful.  DSPs in the south are no different that DSPs in the northeast.  They are no different than DSPs on the west coast. They are really no different than DSPs from Japan.  The unifying and common denominators are simple.  Direct Support Professionals understand the value of people with disabilities.  Direct Support Professionals see that people with disabilities are people first and that their role is to support and help give foundation so that people with disabilities have a level playing field.  Direct Support Professionals have an obligation to be ambassadors for the people with whom they work so they have access and opportunity in the world; the big beautiful world we all share.  It is a small world after all.

Next week I will visit H.I.T. Inc in Mandan/Bismarck North Dakota and spend a few days spreading the good word about the NADSP and the Code of Ethics.

It is great to be back home.  2013 will be an important year for direct support....guaranteed.

Friday, January 4, 2013

Happy New Year and Happy Birthday Harumi

So sorry for the radio silence on the blog.  I am in, and have been in Japan, since December 21st. As many of you know my mother in law has been gravely ill. She passed away with myself and her family by her side early in the morning on December 27th.  Harumi-San Yoshizawa was a beautiful mother, grandmother and woman.  Today, January 4th, would have been her 73rd birthday. Please raise a glass, say a prayer and send her a great thought today as you read.  I will be back with more Direct Support Professional blog entries upon my return to the United States on January 9th.  Looking forward to a good 2013!  I feel this will be the year for Direct Support Professionals to be heard, seen and celebrated!  More soon...
Harumi is the vibrant woman on the left. Julia, my wife and Maya my daughter are on the right....may Harumi-san rest in peace.