Memories of Ken Ervin

If you would like to share a memory or story about Ken, please email Mountain State Centers for Independent Living and we will include your story this page.

Kenneth Joseph 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 to 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. So I will just say until we meet again Kenster, my angel. Love always and forever your Vickster.
Vicki Shaffer

"Much can be done when we raise our voices and join together. We cannot simply stand by and wait for someone else to take action. We must make our own history." (quote from Ken Ervin)

Ken's words are certainly a legacy that he will leave behind for all of us. When I think of Ken and how tirelessly he worked to free his brothers and sisters, the statement from his obituary says it all:

"Ken's commitment was beyond rhetoric - he lived what he believed"

He will be missed by us all.
Anne Weeks, MTSTCIL

I know we all feel a great loss of this tireless and effective civil rights leader and advocate. He touched the lives of so many people, including those he advocated for and those of us who had the privilege of working with him and knowing him personally. Ken certainly made the world a better place for us all.
Steve Wiseman

The first time Delmar and I met Ken we were at the Civic Center. I needed something to drink and Ken and Darla helped me get it. That was the beginning of a long friendship like no other. No matter what time we called, Ken would always help us. One day when we didn’t have any personal assistance help, Ken and his staff drove all the way from Morgantown just to get us up out of bed. That is the kind of friend Ken was to everyone he met. We miss him so much and there are no words to say how much.
Delmar and Karen Davis

I was in Ruby Memorial Hospital in April 2004. I had just had cancer from my esophagus removed, so I was unable to communicate very well. Ken Ervin came in for a visit and asked me "Where is your staff?" I am on Title 19 waiver. I told him that I was from out of town, from Parkersburg, and my waiver provider could not allow me staff because they were unable to pay the mileage for the staff to drive to Morgantown. So Ken picked up his cell phone and called C. C. Brown, head of the waiver program. Ken explained the situation to her, and she told Ken the same thing that my waiver provider told me. So Ken got into his back pack and pulled out his waiver manual, he told her where in the waiver manual it was located, chapter and verse. Ken was correct and at 8 am the next morning I had staff. The staff was not from the Parkersburg office, they were from my waiver provider's Morgantown office. But I still had staff and it was because of Ken Ervin. Ken Ervin was a wonderful man and advocate. He always tried to help those in need.
Kevin Smith, Advocate

A poem by Ken Erwin - No Pity provided by
Helen Panzironi, Center for Excellence in Disabilities

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, West Virginia Statewide Independent Living Council

Since Ken Died, I have tried to get on with my work. One of those things is working with the School of Journalism at WVU. Recently they asked me about my definition of disability, and I had to think of Ken. I realize how much Ken changed my life, and my definition of disability.

My personal definition of disability has evolved over the past fifty years. As a person who was raised by people with disabilities, and who lives with and loves people with disabilities, I can say honestly I have only come to fully embrace a definition of disability that I felt comfortable with, or seemed accurate to me, in the past few years.

Billy Golfus’ film "When Billy Broke His Head” (1994), is a no apologies, take no prisoners look at disability. That film was a tipping point for me. Ken gave it to me. I think it was when I saw it I realized that if I was as disabled as some of my friends, I would not want to be alive... GULP! Ken and I talked and realized truly for the first time that this is ONLY because of the way people are treated in society, not because of who the people are inside, of course. I knew that. But, I also realized I still held on to some of that old belief system. Ken told me it was cool, and that I was totally "rad," whatever that means. I really felt I made a step in the right direction.

Since then I have embraced the definition of Disabled Peopleâ€™s International 1981, who defined disability as "… the loss or limitation of opportunities to take part in the normal life of the community on an equal level with others due to physical and social barriers." But, I still know the most controversial thing I have ever said when speaking to groups, the thing that raised the most controversy in a public setting, was that you can have a disability and have a great life. A woman got up and started screaming at me. She said her husband became disabled and his life was over. That is how most of society thinks of disability, I think. I mean the worst thing that happens to someone on a soap opera is their wife's evil twin shoots them, the bullet lodges in their spine, and they can't walk (until there is a miraculous cure, of course). Ken was with me. He said, "she doesn't get it. It's Ok Helen, she just doesn't get it." I started getting it then. "They" (me included to that point, although I didn't want to admit it) saw it as a life ending tragedy. It isn't, of course, but Ken helped to teach me that. I still think “disability” is really a characteristic of an unaccommodating community, not of the person, but I really hadn't "groked" that up until then. Of course, it is society, the person is still who they are - they are not less because of a disability, society just hasn't caught up. Society is less.

What Golfus drives home in his film, and what Ken got thru to me, is that people with disabilities, and those of us who love them, don’t have to beg for handouts, or bake cakes anymore, or hang out or work with people who don't get it anymore. Society MUST make a leap, even if they need a shove, and see people with disabilities are not the source of the disability. No average American says: “I am an American, if you feel like it give me my rights under the law.” No, we just expect that we have our rights because it is in the constitution. Once you understand it is the same for people with disabilities, you understand it all.

What Ken taught me is if you are a disability rights activist, this is the point where you stop apologizing, and start becoming inpatient with those who don’t get it. It is the point when you stop asking why some people with disabilities are “so angry.” It is the point you realize that you aren't going to wait for everything to be right - or for groups to get a long, it is when you really understand what Martin Luther King. Jr. was saying in his writing "Why We Can't Wait." It is the point where you find there are some people you just can't talk to anymore, because they don't get it. We can't wait because people are dying and they don;t have to. Don't come to me with your suit and hug me and tell me it is ok, it isn't. It is this point when you really understand why Ed Roberts, said “anger is the best thing we have going for us – it gives us the energy to get the hard work done.” We have to remember, when people’s rights are not protected, people die. It is this point I miss Ken the most. I can hear him saying "Sweet!"

If you doubt that people are dying, just ask someone in the movement. Talk to Vick Shaffer, who didn't get out for months and years, because people wouldn't take the time to help her, while she fought for others. People suffer and die everyday because society hasn't gotten it, yet. People in WV haven't gotten it yet. Ken Ervin died because he had to work three jobs just to get by and have time to take care of his health. People haven't gotten that yet.

As Scott Miller said at Ken's Memorial, Ken couldn't stand people saying: "We agree with your motives, but not with your means." Ken would say: "Fine! I don't mind if they don't agree with me. But, can't they do something? Can't they do it now? Why don't they get that people are dying. And if they aren't dying, their lives are being diminished because of lack of accommodations, when it doesn't have to happen. We have the law, we just have to make people enforce it!" They don't do it because they haven't gotten it yet, that's what I understand now.

While Dictionary.com STILL defines disability as: 1.) lack of adequate power, strength, or physical or mental ability; incapacity, and 2.) a physical or mental handicap, esp. one that prevents a person from living a full, normal life or from holding a gainful job, disability rights advocates understand that this definition is WRONG. I finally understand that it is so wrong I have to write them. The lack, or the disability, is in society, not in people. Of course, of course, of course! The barrier to holding a gainful job does not reside in the person, it resides in a society that does not the imagination or the gumption to have valued roles and/or physically accessible jobs for that person. I think that is how many folks still see disability, as a state of being less, than, not whole. To me, however, disability is, as Ken Ervin put it “a social construct that protects people from their fear that we are the same – just one car accident away.” What I get is that I need to stop writing this and do the work SCott asked me for a week ago. I need to get off my tush.

Thanks, Ken. I finally get it. I miss you my friend.

Helen Panzironi, West Virginia University

Visit the Remembering Ken Ervin blog