Monday, January 5, 2009

Memories of JoAnn

On December 30, 2009 JoAnn Bayer died in a nursing home in Belleville, Illinois. She was a life-long activist and resident of Springfield. When I heard she died I asked a few of her friends to write down a few of their memories. There they are.

Dr. Robert Kilbury, Director, Division of Rehabilitation Services, Illinois Department of Human Services

  • Need some folks from the community to show up at a DORS Appropriation Hearing?
  • Need someone to write a letter to the editor about personal assistance wages?
  • Planning a disability rights rally that requires a number of pwd's to attend?

For many years in Springfield, these questions were often answered by a call woman called JoAnn Bayer. As of 2009, we will have to find another answer, another leader. JoAnn, that little powerhouse, is gone from us at the age of 60. No doubt, she outlived all the estimates of her longevity when she was born. She always managed to live life to the fullest; I understand she was happy in spite of spending the last few of her days in a Belleville nursing home.

I will always have a living memory of JoAnn with her Bella Abzug hat on, with her long-time personal assistant, Bessie, standing next to her. I will miss JoAnn Bayer very much; "What's up, Doc?"

Ann Ford, Executive Director Illinois Network of Centers for Independent Living

How do we begin to remember JoAnn? As far back as I have memories of coming to Springfield; JoAnn is part of those memories. If there were trips to the Capitol, she was always there – front and center – daring those ‘in power’ to try to ignore her. I learned once I moved here that if we needed folks to turn out to rally, protest, or testify, the first call was to JoAnn. She would show up, she would bring people, and she would show newcomers how to do what we do and not be afraid. Maybe she never took advocacy 101, but she instinctively knew how to grab attention and what to do with it. Many times, she would come to me at an event, dragging a reporter and telling the reporter “this is someone you need to talk to”.

I have one memory of a bonding experience with her. Many years ago before I lived here and had any idea where anything was, I was in town for a weekend event. JoAnn and I were talking, and discovered that we were both Catholic. She asked me if I would like to go to church with her, and I did. I followed her down streets until I had no idea where I was. She knew where curb cuts were and was not, when we had to roll in the street, and when we had to ask for help. She took me to a beautiful old church, which has subsequently been torn down. As I basked in the solemnity of the ceremonies, I knew so well, I watched her share that experience. After mass was over, it was clear that everyone at that church knew her, and she was determined that they would know me as well. I cannot imagine royalty being treated any better. Then we left that beautiful setting and worked our way back to the hotel, two girls intent on having fun for the evening.

JoAnn, like all of us, was a human being. She had good qualities that made us love her, and some traits that we wished she did not have. Until the end, her heart was with us, and any energy she had was given to our cause. When she could not show up any more, she could read and watch the news and call with info we might have missed. One businessperson who knew her said, “She kept me on my toes.” I responded that she kept us all on our toes. I will miss being on my toes, and I will miss JoAnn.

Mike Meiselman, Board Member – Coalition of Citizens with Disabilities in Illinois

I never noticed JoAnn Bayer was a little person. If England’s Queen Victoria stood over six feet tall, JoAnn was still a more formidable figure. There was no refusing JoAnn. There is no one who encountered her who was not subject to her personal advocacy.

JoAnn was a fighter. Not just for her needs; but to meet the needs of all.

At the State Fair a couple of years ago, the Campaign for Real Choice called for demonstrations when both political parties were having their fair days. Several hundred of us gathered in front of the stage on Democrat day. When the television cameras were going to report on the politicians’ speeches the crowd would be carrying signs saying “Shut Down Lincoln Developmental Center” and “Choice for All.”

It was not at all the message that the politicians wanted to project. The Democratic leaders urged their followers to get in front of us so their signs would be on television instead of ours.

It was scary; some of those union guys were pretty big. Nonetheless, we began to resist; JoAnn, rocked her power chair back and forth; two inches forward one inch back; others who used power chairs followed JoAnn’s lead and slowly advanced toward the front of the stage. Others linked arms and pressed forward. The Democrats gave up and ceded the land in front of the stage to us. West Point is still studying our tactics today.

JoAnn made me feel very special. She brought me candy. She held my hand. She would call me every time I had something published in the newspaper. She wished me health and peace on every Jewish Holiday. Shalom JoAnn.

Cilla Sluga, Blogger

The doctors who examined JoAnn will undoubtedly say she died of heart failure. Her health had been failing for years. But, I don’t think that is why she died now. I believed she died from a lack of community living options and was forced into a nursing home. A strong spirit like JoAnn cannot survive in a prison. So, why did she agree to go?

She got tired; really really tired. Since Bessie retired, she struggled to get quality personal assistants with enough coverage (hours) to maintain her quality of life. As you have read by the testimonials above, JoAnn was a pit-bull of a fighter. If JoAnn could not make the system work, it is beyond broken.

It tells us that not even a fighter like JoAnn cannot win alone. We need to make our movement even stronger. We need our movement to fight to pass the Community Care Act NOW; and then fight to enforce it.

Photo of JoAnn Bayer with one thumb up in the air. Next to her is a certificate for lunch with the Mayor of Springfield. She had a choice of door prizes at a conference; some were expensive, personal, or shiny. But JoAnn, ever the advocate, wanted that lunch. She had already started writing her list of things to talk about with him before the photo was taken. We know she had fun at the lunch... no word on how the Mayor fared.

If you have any memories of JoAnn you would like to share, please feel free to use the comment section below, or send them to me and I will include them.


Chuck Smith said...

I don't think I had the pleasure of meeting her, but I do remember seeing her. It is a shame she's gone. I feel like there are fewer people fighting every day and it is hard not to get discouraged at the apathy I find all around me. Still, if she could do things right up to the end, then so can I.

Jennifer said...

Thanks so much for sharing the memories of Joanne! She was truly a spitfire, and I will miss her greatly. Thanks for the tribute!

Danny (Elivs) said...

A few years ago I impersonated Elvis at an ADA Celebration downtown Springfield & through the entire event JoAnn sat in the front lipping every word clapping her hands. Not seeing her at a disability related event in the future will be hard for some & definitely missed by all.

Tony said...

Thank you for bringing back memories of JoAnne, I was there at that Springfield rally on politicians day with the Democrats. I saw what they were doing, She had the nerve to say "Oh no you don't" in a direct way. She was a force you found hard to resist.

Anonymous said...

Joann Had enough heart and spirit for all of us. She touched all the lives in the community. I am a better advocate for knowing her but she also made me a better person. Kerry J.

Jessica Hayes said...

JoAnn Bayer was my all-time favorite pain in the ass - I mean that with so much love and I think the people reading this will understand exactly where I’m coming from. She was a tiny woman in physical form, but a giant in spirit. As people with disabilities we sometimes shy away from attention and try our best to blend in. We only cause waves if absolutely necessary. And then there was JoAnn. She could have taught lessons in disability pride and power – lessons learned by just spending time with her. One of my favorite memories of JoAnn was at a CCDI conference. She didn’t agree with what the keynote speaker was saying - he had told a joke that wasn’t all that flattering to people with mental illness. If it was mentioned at all, I expected to see some comments on the conference evaluations about the inappropriate joke; at most I would have expected someone to maybe approach him afterward and lecture him on cross-disability sensitivity. But we are talking about JoAnn after all. She drove her power wheelchair to the front of the room during his keynote address and in her tiny voice demanded that he stop his speech and listen to her concern. She left the speaker sort of … speechless. Man she had guts! And I can’t express how much I miss her. The only fitting tribute I can come up with is to think of her the next time I witness an injustice, and try to be that gutsy myself.

Allison Lourash said...

I last saw JoAnn at an LPA Regional in Springfield in October. She was very excited that we were in town and to reconnect. I had a gut feeling that that would be the last time I would see her. I will always remember her smile and the way her eyes would light up when we saw each other.