Sunday, October 14, 2007

Please post your memories and links about Ken Ervin

I imagine many people around West Virginia, and around this country, and perhaps the world are feeling a million feelings from sadness and loss to celebration and liberation as I create this today, the day after Ken died. I am wishing we could all be together to swap great Ken stories and commiserate and cry a little and laugh a lot and vow to work hard for equality and dignity.

So here is one virtual place I hope we can do that.

Please Click Here to post as a comment on this blog.

Please feel free to post anything you want about Ken here, and if you want to post but are having trouble doing it please email Cat at justpeace at gmail dot com and I'll gladly help you post.

56 comments:

Anonymous said...

Tears continue to flow since I learned you passed/ You taught me much/ we do have Power/ Your Voice will Live on in each of Us/ Farewell Advocate Ken /Iwill Never forget you cathy Reed(advocate for advocacy)

Judith Blakley said...

I am in shock. I had to take a short time to collect myself before I could attempt to do your memory justice by writing about you in my blogs.

When talking to my husband about your passing and how much you have touched and influenced my life, and not just my life, but pretty much everyone you came into contact with. Scott said "well, that is his legacy." And it's true. We are your legacy Ken. Your life has made a huge impact upon our lives. We are your legacy.

Mshel said...

Hi everyone. Thanks so much for putting this together. We are all struggling to cope with this loss. Although Ken's workplace, the Northern West Virginia Center for Independent Living, will be closed tomorrow, the staff will be there.. grieving and trying to pick up the pieces. If anyone needs any of us- for support, information, etc. please call- 296-6091.

Thanks again,
Michelle Wakeley

Sarah Einstein said...

I am too stunned by this news to have an cogent comments to make right now; Ken was an inspiration, a collegue without peer, and a real friend. In truth, I either can't or don't want to imagine a world without Ken in it, fighting for what is right, and actually winning the war. The idea that he isn't still here with us is both sad and frightening.

Anonymous said...

You will be missed tremendously. Many people were a witness to your testimony so your "Give 'em hell" attitude WILL continue! Much peace and love to your son, Wesley and your Wife Darla and best wishes to my NWVCIL family.

Anonymous said...

Wow! Ken taught me so much of what I knew about disability--or rather, he untaught so much of what I thought was true about disability. Ken was a remarkable person who overcame remarkable odds. The disability community has lost a true warrior.

Anonymous said...

Ken and I published a book chapter about 10 years ago, I Get by with a Little Help from My Friends, in which we presented abstracts of his autobiography and some of his perspectives on behavioral support and advocacy.

I began that chapter with the following comments:

I first met Kenneth Ervin (Ken) around 1991, during a visit to the University Affiliated Center for Developmental Disabilities (UACDD) at West Virginia University. I frankly admit that upon meeting him, I thought that he was a client of the agency: wheelchair-bound with severe cerebral palsy and speech that was difficult to understand.

My world view tilted a few degrees to one side when I learned that he was an employee at the UACDD; it nearly fell off its axis when I later found out that Ken had acquired master's degrees in both rehabilitation counseling and severe/profound special education.

Once you become accustomed to his speech patterns, you find that Ken is extremely articulate and has a clear (and appropriately cynical) view of the disabilities field. As a person dedicated to advocacy for persons with disabilities, he brings a unique perspective to his work: that of "having been there" and having directly experienced the shortcomings of the system.


I include these comments here, in Ken's memory, because they reflect his impact on me. I also include them because every time we met over the years after we published the chapter, Ken inevitably asked, "Did you really think that about me?"

I always said, "yes;" we always laughed about it. It was a laughter shared among two people who had become friends. It was also partly the laughter born of embarrassment on my part that I had needed the awakening that Ken had (thankfully) given me.

Most of all (and this well surprise no one who knew Ken), it was a hearty laughter that on Ken's part said, "Gotcha, didn't I ?!?!"

Ken, you did get me . . . and you helped so many of us to get IT.

Thank you for sharing with me a small part of your life and a large part of your wisdom.

Scotti

Mshel said...

http://i37.photobucket.com/albums/e74/mochelle619/bandr.jpg if this works, it's an awesome pic that Ken loved of him and Robin

Mshel said...
This comment has been removed by a blog administrator.
pastorbunny said...

Ken was a great warrior in the battle for freedom and we were fortunate to have him as a part of our lives.

Anonymous said...

Ken was a true champion of the underdog. He fought the good fight with humor, dignity and style. I know that my own life has been enriched even by knowing him just a little.

Rest in peace Ken.

Anonymous said...

Many years ago, this scruffy, hippy looking guy, in an Adapt tee-shirt, a long pony tail and dangling earrings, kept coming in to my office, saying things like, “you’re a center for independent living, you need to do something about…..”. I had one exposure to what I thought was Adapt and I didn’t like that experience, so I told him to go away. He did, but he kept coming back. He’d say “But, but, but, Jan, you need to ……”. And I’d send him away. What a pest! He just kept coming back! I just kept thinking, why won’t this man just leave me alone. I finally listened to what he was trying to get me to hear. He had thousands of brothers and sisters all over the state that he was trying to assist with their fight for independence and he needed soldiers for his army. He was asking me to join his army.

At this time, I was the Executive Director of a new center that was also struggling to create its own identity. I had all sorts of people telling me what a center is suppose to be, none being consistent with what Ken was telling me. I went to my first independent living national conference and found that they were talking like Ken. Ed Roberts, the father of independent living often said that the core services of a center were advocacy, advocacy and then there’s advocacy.

I stopped telling him to go away, but rather hired him to be at the helm and help me guide this center into being the best advocacy center possible.
And with my background of being the lead patient advocate at Weston Hospital, combined with Ken’s pit bull approach to advocacy, we did just that…created an advocacy resource center for persons with disabilities.

The impact that this man has had on my life, personally, and this center is beyond words. I had so many calls from colleague asking me “can’t you control him”. Frankly, no, and I had absolutely no desire to even try. We so often played good guy, bad guy. It was down right fun. Often they would talk to me when they were frustrated with Ken, and I’d get them to do what Ken was asking them to do in the first place. That was our plan.

I will miss my advocacy partner, my teacher, my friend. I will miss those conversations that often began with “ I need some administrative guidance here….”. Our center will never be the same as it was when he was here. We will continue his work. His passion will remain strong within us. Ken, it is finally time for you to rest. Fly high my dear friend.

Jan Derry

Anonymous said...

Nature's first green is gold
Its hardest hue to hold
Its early leaf's a flower
But only so an hour
So leaf subsides to leaf
So Eden sank to grief
So night becomes the day
Nothing gold can stay
~ Robert Frost

Ken, you are golden, and one of the true heroes of this world. I'm sad
my Mentor is gone and I know you would have taught me so much. I'll see you in infinity. We'll all be there in the blink of an eye.

Anonymous said...

Though I didn't work with him, Ken's sense of humor and company were something I looked forward to and will greatly miss. I enjoyed listening to his stories and talking about books with him and joking with him. He was an amazing person who I will never forget.

Anonymous said...

Although I have not seen Ken for awhile, I feel privileged that he is part of my memories of my time spent in WV. As I struggle to think what to write, so many memories come flowing into my mind. Like the many times he would be in the office, looking for candy, or asking about paperwork, or being the friend who helped me through some difficult times. My memories of Ken seem endless. But in closing, I leave with 2 thoughts. The first is from my faith, which prays that those who have passed away enjoy the light of God in heaven. The second is from the Orthodox faith which would pray that Ken's memory be eternal. So, to my friend Ken, may you be eternally basking in the eternal light of God.

Mattie Miralles

Anonymous said...

When I first met Ken, I seemed to be in opposition with his advocacy style. However, it didn't take me long to learn the effectiveness of Ken's methods. Ken was a true advocate-in the style of a Ed Roberts and Abby Hoffman.

Ken, like Abby, was a master in theater advocacy. He knew how to take a situation and highlight the importance of his cause. Ken cared about his cause, not political or community opinions.

Ken once paid me a huge compliment during my rehab. He called me his hero. But, in reality, Ken is my hero! His life story and achievements are beyond amazement. It is truly a sad day for both the disability community in West Virginia and the world.

I bet Ken is already busy with advocacy effects in heaven for those of us who are left behind. Truly, his memory will be eternal.

Tony Miralles

Anonymous said...

You Are Never Forgotten

You are somebody that everybody knows
Wherever you are is where everyone goes
And I can't help but think about what I do now
Will I see you someday, will I find you somehow

The night follows day, the moon in the sky
The world keeps on turning and no one knows why
It goes and it comes it comes and it goes
Which ever direction nobody knows

Our times together though cut short were precious and dear
However it happened just may never be clear
I'm here but your gone I don't understand
But your leading the way always holding my hand

The night is too black those times I'm alone
The road seems to long, I wish you'd come home
And when the sun rises I look for you still
And then I remember and remember I will

The wind in the sails water covers the earth
The day of your birth and the day of your death
Mile after mile and after while the warmth of your heart
The shine of your smile they keep me going
The memories of love that's all I have left like the flight of a dove

Where are you now? Are you far, are you near?
Are you helping me live will you help make it clear
Wherever your going where ever you've been
Whomever you've known all of your friends

We all stand beside you we all love you still
We're missing you now and forever we will
We sing and we talk the world in our hands
We run and we walk while beside us you stand

For those who remain never let your love wait
When they're no longer here it's always too late
So we roll the days over again and again
And where we have ended, it's where we begin

And Yes -- stars they come and light -- yes they bring
The miracle of life a beautiful thing
We know not where we're going' we just know where we've been
The days we shared together the memories that will never end

Author Unknown

Anonymous said...

A true miracle on wheels...God took his right hand man back home...dance with Jesus in those converse shoes my friend...you will be missed.

Everytime I wear my converse shoes I will be walking for you.

God bless you my hero as he blessed us with you.
Christina Fairmont WV

Anonymous said...

Thank you Ken for everything.

Wes and Darla you are in our thoughts and prayers best blessing to you both.

Unknown said...

I am still in shock that Ken is gone. I have spent enough time around good advocates to recognize Ken as a very good one on my first meeting.
He spoke without fear, without qualms, because this work was his life. The work and his life are completely entwined with the joy of living bound to the desire to win, not for winning's sake, but because winning was the right thing.
Godspeed Ken. My thoughts are with Darla and your son.

Imp said...

http://www.youtube.com/watch?v=zyrsL5yh9GI

~ ~ ~

Do not stand at my grave and weep
I am not there; I do not sleep.
I am a thousand winds that blow,
I am the diamond glints on snow,
I am the sun on ripened grain,
I am the gentle autumn rain.
When you awaken in the morning's hush
I am the swift uplifting rush
Of quiet birds in circling flight.
I am the soft starlight at night.
Do not stand at my grave and cry,
I am not there; I did not die.

~ Mary Frye (attributed)

Mama10EE said...

What a truly sad day for the disability community. I saw Ken on Friday as he rolled past my office at the CED on his way to see Helen. I have seen him many days in the past, he was such a big part of our office even though he no longer worked here. I never thought Friday would be the last day I would hear the telltale click of his wheelchair as he came down the hall or heard his voice. He probably didn't know much about me, and I didn't know much about him, but I do know that in the short time I did know him he touched my life and my continued work at the CED has been forever changed by his presence. God bless his family in this very sad time. He's running with angels now.

Unknown said...

Jan, you reminded me of a phone call we had about 10-11 years ago. Ken had been a Trainer for WVPTI, and you called me because Ken listed me as a reference. Naturally, Ken had all my praise and admiration. However, I cautioned you about paperwork...Ken had no time for such menial tasks when there was so much else to do and so much he needed to accomplish. In his words to me, "What a waste of precious time!" And, he accomplished so much for many families and children!

Ken was and is the balance I needed...for myself as a parent of a child with a disability, and for all the families I work with who have children in school. What a role model! Ken taught me to look at children not only in the present tense, but in their future tense...not just for one school year, but how that one school year would make a difference when they were adults.

Ken's passion, humor, sensitivity, and love of all mankind made him stand above the rest in the field. I'd like to share one of my favorite memories:

WVPTI had moved our office, and I called Ken to see if he would come down and give me hands-on assistance to make our office accessible and to talk to the landlord. To get him into the office, we had to put some boards up to make a make-shift ramp. When Ken was leaving and heading down the ramp, his assistant tripped and fell, and tossed Ken out of his chair and onto the lawn. The landlord was frantic and nervous and ran over to Ken. There Ken laid...face beet red and looked up at the landlord with a frown. Mr. Ellis said "Are you ok?" quite nervously. Ken stated very frankly, "Man, I can't walk!!!" Needless to say, Mr. Ellis learned a lesson on disability and humor that day. :) :) :)

You taught us well. God speed.

Pat Haberbosch

Unknown said...
This comment has been removed by the author.
Helen Panzironi said...

I was speaking to Ken's and my friend, Vicki, this morning.
She said I could share this story.

Vicki said she was talking to a woman who said: "I'm sure Ken is in heaven", and I (Vicki) said "...No doubt about that!" She said "and he is walking." I said "...no I don't know about the walking part, because he was very proud to have a disability, and the disability was him. He told me many times he could not see his body any other way."

I remember one time I was with Ken and a (well-intentioned) woman was telling Ken that when he got to heaven he wouldn't have his body, and he would be able to walk. Ken said something like:
"Why not? I am attached to this body. I really like it. What's the matter with it? You don't like it? I like it." I thought that was wonderful.

I have heard Ken in my head ever since he passed. I can hear him telling me what I need to be doing and that this is not about him it is about the movement... but for now, for me, and all of us, it is about him. Like all of you, I miss Ken. But when this is passes, I think the greatest tribute to Ken will be to keep his work going and to support his friends and family. None of us will fill his "trucks" - but we can follow in the wheel prints, and carry on.

Anonymous said...

Ken you are the insspiration of my life ,my daughter is a person with a disability and I have known Ken for 5 years he taught me to fight for what my daughter needs and not to give up he was always there in any matter just there to give a helping hand god bless you ken we loved you,so much I will pray that some one will try to feel your shoe,and carry on his fight for the disability community.....love forever.....Twylla And Cassy Bays

Anonymous said...

I was in my doctors office today and people all around me were talking about Ken...its such a sad loss for the state of WV I dont care who you are if you live on wheels in a bed or you run 5 miles a day...life will not be the same witout Ken. Who can...who will wear his converse now? I dont know of one person who can do what he has done for all of us. Its time to give back to Ken...we all need to keep his work alive and going strong. God bless you Ken.

Anonymous said...

I learned of Ken’s passing this morning and it has taken me until now to collect my thoughts – this just rips me apart! He and I were tight when in close proximity and he will be greatly missed!

Believe it or not, he and I actually met in DC – I’m not sure how he got there, but we were both there to participate in the ADAPT action. My then co-workers and I drove up and he asked us to take him home! We went out of our way coming back to accommodate him and his assistant......THANK GOD WE DID! His knowledge, laughter, jokes, kindness...... will GREATLY be missed! He went out of his way for me too... coming to Parkersburg just to help me! Ken had NO FLAWS if you ask me........awesome guy!

Love you until the day I too pass, Deidra Reese

Anonymous said...

When you and I first met
You left a presence that I will never forget
The light from your heart burned brightly
Anyone who met you thought of you highly

Your words touched many
To those that lived and needed your presence
And those that didn’t make it your voice spoke of that pain
For you knew you had to break “the chain”

Your actions brought down many walls
Anyone who knew you, you always answered you calls!
Whether it meant writing a letter, making a visit, chaining yourself to a pole
You never stopped acting from your soul

You will never be forgotten your actions will prevail
Nothing will ever replace the Ken Ervin tale
Your actions from your soul will be widespread
The cause that you started will never be dead!

Live on Ken Ervin!

D. Wilfong said...

My daughter, Christie, and I met Ken Ervin about 4 years ago at a Navigators meeting in Morgantown. WVCIL had found money for renovations to our house so Christie could live at home.Ken not accomplished amazing things, but inspired others..the members of the construction team that worked for us came from everywhere -from a church youth group that deconstructed a bathroom, engineering students, physical therapists,to the DNR employee that put in roof vents. It was truely amazing. Being a lay minister the second or third thought that entered my mind was "If I had the privilege of speaking at Ken's funeral what could I say?" The story from the Bible where the lame man was on a stretcher and his friends were trying to get him to Jesus but the house where Jesus was teaching was too crowded to even get through the door. They probably even tried to get him through windows, but there were simply too many people. Someone got the idea to take him to the roof and pull up the roofing and let the stretcher down on ropes right in front of Jesus. It worked, showing us the value of persistence. No, I don't see Ken as the person on the stretcher, I see Ken as the instigator of the group tearing up the roof!! We only knew Ken a short time and did not know him well but he paid me the biggest compliment anyone has ever given me.After hearing me speak on one of the rare occasions someone trusts me with a microphone, he was reported to have said,"I could work with that lady. She's a fighter." (Takes one to know one, dear friend.) The Community Act is one of most important things out there right now. Speak up folks! This needs your voice. I am primary caregiver for my daughter, I am 59, my daughter is 28; when I am no longer around she may still be living. Will she be permitted to stay in her home? To continue her occupation? Or will there come a time when I can no longer afford to serve as primary caregiver and assistant(Christie is a textile artist) without pay? Under state regulations, a relative can recieve no compensation of any kind for these services. Ken is gone friends, but his cause remains and that cause needs us!

Anonymous said...

Ken was like a father to me, he was a role model, a friend. In the ten years I knew him Ken accomplished so much and I am proud to have been someone he could rely on for help. He taught me so much, how to make a difference, that its even possible to make a difference.
Ken told me people with cerebral palsy have a reduced life-span and that he needed to find someone to carry on his work before his time came. Thats the kind of man he was, always thinking about others. Those are some pretty big converse to fill, but maybe if everyone who knew him remembered his spirit and thought "what would Ken say about this?" it would be a good start.
-We miss you Ken-

Anonymous said...

Wow...We said goodbye today. I look forward to the service in Morgantown Wv...and I hope it will be more about Ken the Ken we all know love so well...I wish Kat would have been asked to say somethings about Ken no one really touched on what an amazing man Ken was. I never saw ken without his friend Kris so I wonder why no one made him part of this service...I saw no converse I heard none of the music Ken liked and not one time did the pastor say Dalras name.

Anonymous said...

cathy Reed
Well When we Have the real service In Morgantown ( was there at the funeral) we will get to share how we feel and how you touched so many / duh like did Jan Derry/ Vicki/ Darla/ Scott Miller or others get to speak Oh my no/ Now Gov Joe Manchin did get to speak and I will remember what he said/ as I said in My earlier Post YOUr VOICE will Live on in All of us

Deana Poling said...

Hi everyone- I just got home from Buckhannon, I don't remember most of the drive home. Ken has left big (converse)shoes for those of us in the disability rights fight to fill. I hope that we make you proud, you have taught all of us so much, how to stand up for ourselves, to make spur of the minute decisions and take action when wrongs are being done. Your FAMILY at NWVCIL will continue with the torch that you lit in all of us, we will be there for Darla and Wesley because that is what you would expect of us, but most of all we will miss you my friend. Just keep an eye on us from where you are and kick us in the pants when we need it.

Anonymous said...

I, like many of you I have spoken today - woke up with a fury. I am still humbled by the Governor's response. I was not his biggest fan, but he changed my mind yesterday. He was the only one who spoke about Ken today, other than the man who read the obituary that was written by the people he called his "family" in Morgantown. I tried, like all of us, to respect the families wishes. Their grief and their unique role in his life is precious to them, I have no doubt. However Darla Ervin, who is still legally his wife graciously let them handle the service. It should be clear however, that the service was paid for out of Ken's estate, and his wishes need to be honored, too. None of us who knew Ken today were prepared to hear the baloney about him being "whole" in heaven - or him "standing tall." Ken had the best body image of anyone I knew. He liked his body. If you had a problem with it that was your problem. None of us were prepared not to be able to speak. None of us were prepared to be kept from his burial because the site was not accessible. Can you even image how Ken would have stood up and screamed if this had happened to any of his friends???- Frankly he screamed at me about it all night and I can still hear him in my head screaming - "You had the powere and you didn't use it!"-None of us were prepared that although Darla is legally his wife, and was gracious enough to let the family handle the service - that they would still deny her even being mentioned. Thank God Joe Manchin did.

This is a teachable moment - as Ken would say. It is time to be heard. We will respect the grief of the family, because we respect families, but they must also know that what they did denied the very work that Ken stood for. We must find a way to show them that in the most respectful way we can, but we must also find a way to make the cemetery accessible. It is the least we can do for him. He would have done it for us.

Judith Blakley said...

As I was unable to attend Ken's funeral, I am just now learning that the burial site was inaccessible. This cannot be so. People have to be able to visit his grave. His wife and dearest friends MUST be able to go to where his body lays to deal with their grief.

Even though it has been well over ten years since my father passed away, there are times when I just have to go and sit by his grave. It calms me and centers me. When I need guidance and the world is too loud and busy for me to think. I go and sit by my dad and ask him for help figuring out what to do. For Ken's family and friends to be unable to go to him and get that peace and direction is unconscionable.

Maybe this was part of Ken's plan. To force the cemetery to become accessible as an example for other cemeteries across the country. He will continue to foster change even in his death.

Anonymous said...

I feel sadness and happiness after reading all of these comments and memories about Ken. We all have him in our hearts and no one can take that away.
Once again Ken is teaching us! With this being Disability History Week we and thousands of others have heard the history of someone who has made a huge difference in the lives of so many, those with disabilites and those without. Tomorrow may never come, so tell those you love that you love them and make every minute count.

Live well, love much and laugh often.

Anonymous said...

I love Ken Ervin. He was one of the most brave and generous souls I have ever known. Even when he made me angry, I had love and respect for him and his mission. His own life experiences made him relentless in working to keep people from or get people out of the situations he had to live through.

Ken was one of the few people I have ever known who lived what he preached. He never gave up on anyone. He took people into his own home until he could get supports in place for them to be in their own home. He didn't care if he made people angry - though he seldom showed anger himself - he did what it took to get the attention and action of policymakers.

I can remember many phone conversations with Ken, for many years, talking about how we could work together - how our roles were both necessary - how we had to work together. I believe Ken respected my opinion and he often honored me by asking me what I thought he should do. I hope I was helpful.

Ann Watts McDaniel

cat said...

Subject: FW: Thank you for your presence at Ken Ervin's funeral
Date: Tue, 23 Oct 2007 11:19:03 -0400
From:"Governor" governor@wvgov.org
To: justpeace@yahoo.com


Dear Cat: Thank you for your recent email. It was an honor and a privilege for me to attend and speak at Ken's funeral. His tireless efforts on behalf of the disabled community are to be commended and I applaud his selfless contributions.

Ken was a man of remarkable character and an outstanding West Virginian! He will be sorely missed.

Your thoughtfulness in writing is deeply appreciated.

With warmest regards,

Joe Manchin III

Governor



From: Cat McConnell [mailto:justpeace@yahoo.com]
Sent: Tuesday, October 23, 2007 9:12 AM
To: Governor
Subject: Thank you for your presence at Ken Ervin's funeral



Dear Governor Manchin:

I really appreciated your presence at Ken Ervin's funeral. What you said about Ken seemed very genuine, and I believe it meant a great deal to Darla and Wesley Ervin as well as to the rest of us there. I particularly appreciated your acknowledgment of Ken's relentless and selfless work on behalf of people with disabilities.

I sincerely hope that, even though Ken is gone, you will still keep that voice in that back of your mind when you take and approve actions that affect West Virginians with disabilities, the voice that says "what would Ken Ervin think of this?" Though there will never be another advocate quite like him, there are so many who are now redoubling their efforts to keep the independence and dignity movement he led alive and moving forward.

Thank you again coming to Ken's funeral and for the authentic words you spoke there.

peace,
Cat McConnell

Anonymous said...

To the friends of Ken,

My name is Beth and my husband Rick and I have known Ken since our son Michael was born just over 19 years ago. Mike has CP and we met Ken at a an action. Afterward we got together over dinner and talked well into the night. Mike at the time was only 4 and I was still dealing with our "new" life. We have two other children who are older then Mike. Well, Ken told us the story of his life and we were encouraged by his strength and determination.
I remember like it was yesterday when I asked him, "Of everything I should know about raising Michael, what is the most important?" He looked me straight in the eye's and without missing a beat stated, "Know what his rights are and then teach him what they are". "And most of all treat him no different then your other children and expect no less!"
I take these words to heart this very day. I remember calling Ken and telling him of Mikes first advocacy on his own behalf. We were at the Morgantown Mall and Mike went to Santa's big red chair and asked for a ramp! Santa say's, "What? You want a ramp?" " why do you want that?" Michael said, " So I can get my chair next to yours like the other kids." Then he turned sharply in his chair and rolled away! Michael was six or seven at the time.
Ken, thank you so much for entering our lives, we will miss you.
P.S. On the way home from WV back to AZ Mike say's he will pick up your torch and make you proud.

23 October, 2007 23:44

Helen Panzironi said...

I was turning Ken on to some Weepie's music (from Jenny Shaffer, on a trip to Charleston once. He called it "hippie chick" music. This was the song he liked the best. I thought I would share it with you all. We listened to it several times. "Sweet!" Helen

Rocks and Water
Words and music by Steve Tannen and Deb Talan

Seven times I went down
Six times I walked back
I don't fear the dark anymore
'Cause I've become all that

Chorus:
I will be rocks I will be water
I will leave this to my daughter
Lift your head up in the wind
When you feel yourself grow colder
Wrap the night around your shoulders
I will be with you even then
Even when I cannot see your face anymore

Don't forget the time I wooed him with red wine
The devil he wore such a fine, fine shirt
And it stayed so clean
While he dragged me through the dirt

Now honey don't trust anyone who looks you in the eye
Don't take any kindness, it's a demand in disguise

Repeat Chorus

I have seen such things child
On this and the other side
Words cannot show you
The midnight owl it does not know you
You will see for your sweet self by and by

Repeat Chorus

©2000 Steve Tannen and Deb Talan

Anonymous said...

I will have to post this as "anonymous" because I'm still in the "business"....you'll understand after reading it....

I met Ken about 16-17 years ago when I was asked to give him a ride to a Peoples First Conference we were both attending and presenting at....never met before...never heard of him before.

Met in a parking lot, he got in my truck....we looked at each other and figured this was gonna be a good week!
After reading all of these wonderful and heartfelt posts, not one person so far has posted what I found out about Ken that week......the dude could PARTY!!

As with all of you.....I know my life is better having Ken be a part of it....and I hope many of you got to party hard with Ken as well!

And....forgive me if when I think of Ken there is no tear in my eye (those have come and gone).....but rather a smile on my lips.

Rob said...

I miss you Ken. You were a brother and a hero.

Rob

Anonymous said...

Darla Ervin I am Ken's wife. I am asking everyone to please Stop talking about what you did or didn't like about the Funeral because it is hurting myself, my son and all my family.

Please Lets make this blog a place where everyone can share their experiences about one very unique and Irreplaceable man.

Anonymous said...

Hi all,

I haven't visited this site since the funeral. I agree with Darla, the funeral was for the family and friends that knew him a Kenny. We just received a thank you note from his Mom who shared how little she knew of Ken's work and just how much of an impact Ken had with his work. So many lessons to learn by what we all experienced at the funeral.

We are having difficulty locating a place to hold Ken's celebration of his life, here in Morgantown . As soon as all the details are finalized, we will post here so everyone knows.

Many of you talk about carry on his work. Ken did whatever anyone needed, regardless of whether it fit within the scope of his work here or not. We at NWVCIL are trying to put together the huge puzzle of projects he was involved with and we need your help. We have no intention of leaving any stone he began to turn, left unturned. We so very much want to be a catalyst to having his work continue, but as you all know, no one person can fill his position. We don't have the resources to hire someone to work 24/7 as Ken did, thus please be patient with us as we try to fill his position. Also, please share with me directly, what Ken was working on with you or on behalf of you. We all know how Ken was regarding paperwork, thus, picking up the pieces is harder than you can imagine. Our center's 800 number is 1-800-834-6408. My email is jderry@nwvcil.org . I so very much miss my "roledex" of contact info, who's who in DHHR, who do we contact for....... We lost our "go to Man", we lost our dear friend. So, final message, we are all saying his work will go on, well, we need his army to step up, let us know what issues are your passions, what YOU are willing to do to help us move these issues forward and how we can contact you.

Jan Derry
Executive Director

NWVCIL
601-3 E.Brockway Ave.
Suite A&B
Morgantown, WV 26501
304-296-6091
jderry@nwvcil.org

Anonymous said...

I would just like to say that my thoughts and prayers are with Ken's family.
I have a son with a disability, and while I was attending Partners in Policy Making in Charleston, I had the honor of meeting Ken. He tuly inspired me, to fight for what was right for persons with disabilities. I not only advocate for my son, but I encourage others to do the same.
Ken you will be sadly missed by many, but I fully plan to carry on your work.

Unknown said...

My sister found this article in th e Dominion Post & then wrote this
this message to Wesley and I. I thought that I would share it with everyone. This is an example of just how strongly Ken could effect one person after meeting them only once or twice. The original Article can be found Here http://www.democraticunderground.com/discuss/duboard.php?az=view_all&address=250x3034

A tribute to my brother-in-law, Ken Ervin

This past weekend, the disabled of America lost a hero and a champion. He born with cerebral palsy, and he died this past weekend at the age of 45. He was married to my sister, who was also born with cerebral palsy, and leaves behind a great legacy and a torch for all of us to carry on from here.

This is an excerpt from the newspaper editorial column about his life. Please keep my sister and her son in your hearts right now, because they are devastated.

(from The Dominion Post, Wednesday Oct 17 2007)

One who lived what he believed

Ervin's advocacy, contributions to state's disabled won't die with him

Political, physical and all other realities were something that Ken Ervin believed you rise above.

Born with cerebral palsy 45 years ago, Ervin died quietly in his sleep last weekend. But his life and his advocacy on behalf of the more than 400,000 disabled residents of West Virginia were anything but quiet.

...

A point he never tired of making: Disability rights are civil rights, too. And he insisted that people with disabilities may have a medical condition, but it is also really a social condition. "We're not Medicaid numbers, we're human beings," he was quick to note. But words and working from within were not his only tools in promoting equal access and fair treatment.

Protests that ran the gamut from shackling himself to the White House fence and a local school's flagpole, to demanding governers and presidential candidates to attach their signatures to political promises, also figured in his advocacy as a citizen.

After spending much of his childhood in and out of state facilities, Ervin, who organized the West Virginia chapter of Americans with Disabilities for Attendant Programs Today (ADAPT WV) constantly lobbied for allowing the disabled to live in a home of their choice.

...

"It's not a matter of nursing home quality. Would you rather live in a community or a place where you lose contact with family and friends? People can go from being a productive citizen to being locked away in a nursing home," he said in October 2000.

...

Our state has Ervin to thank for many changes that no longer allow for ignoring or disregarding the disabled. Of course, he would be the first to point out that more needs to be done, but his contributions have made a real difference.

Although Ervin lived with some harsh realities, it never stopped him from fulfilling his dreams.



Rest easy, Ken. You died a conquerer.

Darla

Unknown said...
This comment has been removed by the author.
Unknown said...

Ken's Memorial Service Will be at the Warner Theater in Morgantown WV on Saturday November 17, 2007. It will be from 1 to 3 pm. Here is the address of the Theater and also a link to the map directions.

147 High St
Morgantown, WV 26505

Get Directions
(304) 291-3939

thewarnertheatre.com

http://maps.google.com/maps?hl=en&um=1&ie=UTF-8&q=Warner+Theater&near=Morgantown,+WV&fb=1&cid=0,0,16158171011091582656&sa=X&oi=local_result&resnum=1&ct=image

Unknown said...

PRESS RELEASE

For more information: Date: November 12, 2007
Contact: Jan Derry or Anetta Johnson at CIL
Telephone: 304-296-6091 FOR IMMEDIATE RELEASE
Memorial Service for ADAPT WV’s Ken Ervin
A memorial Service will be held for disabilities rights advocate Ken Ervin, who passed away in October. The remembrance will be held on Saturday November 17th from 1 to 3 pm at the Warner Theatre in downtown Morgantown.
It will be open to anyone who would like to come to celebrate the life and work of a man who dedicated his life fighting for folks with disabilities.
The Warner Theater, one of Ken's favorite "haunts" is located at: 147 High Street, Morgantown, WV 26505
Reception will follow the Memorial at the Warner Theater at WEEZIE'S, in Star City, WV.
WEEZIE'S is located in Star City at 3438 University Avenue, Across from the Volunteer Fire Department.
Ken was born in Buckhannon, West Virginia, on January 7, 1962. Ken was a graduate of Buckhannon High School and had a bachelor’s degree in psychology, a master’s degree in rehabilitation counseling and master’s level course work in special education from West Virginia University.
Ken Ervin was a totally committed disability rights advocate. He worked 24/7 to protect and honor the rights of people with disabilities. Governor Manchin said that, “Ken was the most passionate person I ever met.” Whether Ken was chaining himself to the fence of the White House in Washington, D.C., to a school flagpole in Monongalia County, or helping some one move out of nursing home, his commitment was beyond rhetoric - he lived what he believed.

For more information contact Anetta Johnson at 296-6091.


###

Anonymous said...

Kenneth Joesph Ervin died in his sleep October 13th, 2007. He was an
advocate known and loved by so many people. He was the founder of ADAPT
WV. He worked almost 24/7 to protect and honor the rights of people with
disabilities. He was 45 years young. One of his requests was no parades
in his honor. Ken was like his hero Wade Blank he didn't do things for
awards, he did it because of his love for his brothers and sisters
with disabilities, and Ken was very proud have a disability.

I never thought God made superheros until I met Ken Ervin.
He was may people's superman, even though he would disagree
He was a loving father, son, friend and advocate
He loved to read. In the last year you would usually see a comic book
in his hand.
That is how he would relax while fighting the injustices of the world.
He loved Batman.I guess he might tell you I was his Robin
I can not and do not ever want to compare myself to the Greatest Man I
Ever Knew
No one could compare to his greatness. He always told me I was just as
good as him
I would have to tell you dear friend you are wrong
Ken often had nightmares about the people he could not save from death
or institutions.
He is now with those friends who have passed and they are glad to see
their friend
We must keep up fight to stop the injustices against his brothers and
sisters
Maybe Governor Manchin will find it in his heart to make our road a
little easier
After all he called Ken his friend, and said he was trying
He needs to try harder if he doesn't there will be a strong message
that Ken's legacy will never end
I am sorry this poem is not in rhyme, but it does have a reason
I wanted to let everyone know I will forever miss my friend till I see
him again in Heaven
I love Kenny more than words can say. He was my friend, partner and my
rock
I hope and pray he gives me guidance on how to live without him I have
trouble with that one
I wish I could ask God to bring him back, but that can not happen.
It would also be very selfish of me. Ken worked so hard it is time for
him to be free
Free of the worries and nightmares that plagued him
He has what he always wanted a fine son in Wesley Baker
It's so hard to say goodbye to the man I cherished, loved deeply and
who was my hero
I will miss his laughter, his unselfishness, his guidance and his
safety net
I am so sorry for rambling I just don't want to say goodbye to a man
that I love with a full heart and was my everything.
So I will just say until we meet again Kenster, my angel
Love always and forever your Vickster

kevin nichols said...

hello all
i miss one of the best men that ive known he didnt worry about him but all of the things and people he came across

ken help me lots of times in one of the really really big bumps in my liofe i will always love him for helping me get the things i need to get right right

if anyone needs to talk or help call me at 304 319 0786 i will try to help the best way i can

evey said...

I WAS DATING KEN FOR OVER 2 YRS WHEN HE PASSED AWAY. HE WAS ON HIS WAY TO MY HOUSE THAT NIGHT HE PASSED AWAY. I AM UNSURE WHY HE STOPPED AT HIS BEST FRIENDS, BUT SHE DID NOT KNOW WE WERE TOGETHER. IT MAKES ME HAPPY THAT HE FINALLY TOLD HER ABOUT ME!

LOSING HIM IS THE HARDEST THING I HAVE EVER HAD TO LIVE THROUGH! YET, 1 HE STILL IS & ALWAYS WILL BE WITH ME, & 2 I KNOW WE WILL BE TOGETHER AGAIN SOMEDAY!

cat said...

It's been a long year without you, hobbit.

cat said...

Another year went by, and I still occasionally absentmindedly reach for the phone to call you to ask you something. Nobody has stepped up to take your place as my disability advocacy guru.

Anonymous said...

Hey, this might be off topic, but where did you get the html template for this website? Thanks!