Our mother never once waivered. She was never afraid of a fight. She never became silent in the face of injustice. She always said, “Change is a long, hard road, but that is not an excuse to give up.” She currently has cancer tumors on her brain that make it hard for her to speak, and yet…
Black Lives Matter. Period.
We – The STUFF Sisters – grew up with an Earth Mother. We began our lives on her hip and holding her hand as she marched and volunteered during the Civil Rights Movement. She went on to be a dedicated and celebrated leader in the Women’s Movement and the ongoing fight for the Equal Rights Amendment. We spent countless hours and days sitting at the Missouri state capitol in t-shirts boldly printed with messages of equality, while we helped stamp envelopes, fold flyers, and make yard-signs.
We were raised on a healthy dose of social justice. We were taught that human rights are NOT political. We were raised to have voices and to feel empowered to speak our minds. We attended public schools during desegregation and our names were offered to be part of the landmark case to integrate schools in Kansas City and Missouri.
We are proud, opinionated women that became active, participating members in the fight for social justice and equality for all people in our country. Our store has always been a safe space for all people. Our store’s doors are always open to anyone and everyone. We represent artists and creators as diverse and beautiful as the world in which we live. In addition, we curate works that hopefully reflect that same diversity.
The weight of the world must be terribly heavy. In the Arctic and here at home.
Just a few days ago, I stood in an energized crowd and kicked off the year that includes the 31st annual AIDS Walk Kansas City. A cold January night in an overheated room made me almost believe spring would come and we would all be in Theis Park walking and talking and celebrating.
Today is World AIDS Day. It is a bit of a high holy day for me. I take serious time to think about what my commitment to the AIDS battle is …
Today is World AIDS Day. It is a bit of a high holy day for me. I take serious time to think about what my commitment to the AIDS battle is on a local level and how HIV/AIDS ravages communities and the world. It is, by sheer numbers, a global pandemic.
A week ago, after a week or so of dry coughing and a no-longer-sexy-to-me-sounding voice, I needed someone – a professional – to take a look at my throat.
I live a life of having. I have a home. I have a job. I have insurance. I have reliable transportation. I have a child. I have my health. A happy marriage. Loving friends. The list goes on and on. And, as my sister and I say to each other when things seem bad, I have my own teeth.
A week ago, after we moved into our brand new house we were able to settle in really quick into our new neighborhood, I started having flu like symptoms. I had been waiting patiently to start a new life in this home ever since our old home was practically destroyed in a storm. Our insurance company told us that they couldn’t cover all the damages, so our best option was to find a new home and we aslo decided to change our insurance plan with another company. We got a Fair plan alternative which will sure enough cover any other damages to out new home, so that way I’m not so stressed. A week or so of dry coughing and a no-longer-sexy-to-me-sounding voice, I needed someone – a professional – to take a look at my throat, I wasn’t able to enjoy settling in to our new home.
Getting in to see my primary care doctor is easy when you can book months in advance for a wellness exam, but it gets dicey when you need to see him on the fly. I like him very much and trust him implicitly, but I needed a quicker opinion. Like a walk-in clinic. But the one in my local Walgreens makes me nervous. (I’m sure I’m being irrational and it is just fine.)
Then it dawned on me that I knew of just such a clinic, and I headed for an appointment at the Kansas City CARE Clinic. Excellent choice, and I was able to get in one day after I called.
Me and the Clinic. Well, the front door logo at least.
Now, in an effort a full disclosure, I have served on the Clinic’s board since 2009 and am currently their immediate past board president. I have known about them and their services since 1995 when I began my volunteering love affair with our local AIDS Walk and, therefore, the AIDS Service Foundation of Greater Kansas City. These two entities raise much needed funds all year for not only KC CARE but three other local AIDS service organizations.
I have been a part of leading multiple tours of the Clinic and the building as a whole. I have helped clean the garage, shoveled ice and snow from the front, and sat for a multitude of meetings in the various meeting rooms.
But I had never been a patient in the Clinic. Several people who I work with there knew I was booking an appointment, but I specifically asked that I get no special treatment and that no one on staff know of my volunteer service. I wanted to experience the Clinic as all our patients do.
The reason I had never been a patient is because I have had health insurance since I was 20 years old. Plastic card carrying member of the “I have insurance” brigade. I’ve been lucky to be able to keep it through a multitude of life and job changes and premium increases.
But now, after a multi-year implementation conversion that allows the clinic to be able to accept insurance should a patient have it, I was in!
Pen choices. I chose the purple flower.
A smiling man met me at the counter. ID card and insurance info were whisked away and returned swiftly. Questions were answered quickly and in a friendly manner. This was an experience I shared with the people who followed me to the counter to check in and then waited with me in comfortable chairs in the warm, well-lit waiting room with a huge west-facing window.
“Ms. Simmons?” the man in the orange pants said as he opened the door to take me back to the scale. My nurse. A private room. A blood pressure check that confirmed, again, my severe “white coat syndrome” and its high-numbered reaction to health care providers. He asked good questions. We laughed at several of my answers, and then he was gone to retrieve the doctor, but not before I asked to take a photo of his pants because they matched my jacket. He smiled wide at the request.
Nurse pants. Great color.A snippet of my orange jacket. And the reading materials.
All was well with my throat. Nothing out of the ordinary, but it was clearly angry. It wasn’t scratchy, it didn’t hurt when I breathed in or out, and it didn’t burn when I swallowed. The doctor and I talked through a few oddities – mid-life onset allergies being one we landed on. We’d wait and see.
Clutching a prescription, he left me to decide whether I needed it after another day or two. I was asked to check back if anything stayed “funky”. I was given clearance to continue to be with people and to share tight space with a friend on a road trip.
Mostly, I was asked to consider making the Clinic my “home”. I knew just enough about the phrase “patient centered medical home” to know what the doctor was asking. I said I would think about it and walked out of the room after a warm pat on the back.
I had to wait in front of the huge window for my ride home to appear. During that time, I watched people come and go from the waiting room. They were always greeted and cared for with a smile and respect. It blew my mind. This was not always the case at my primary care doctor’s office. Many of the people I was sharing this waiting room with – maybe most of them – do not have what I have. Or in the combination in which I have them. Most of them did not have insurance.
Place was spotless. Spotless.
For over an hour, over a week ago, I was clearly in the hands of people who know how to run a true home. It was warm, inviting and clean. I was cared for, and extremely well.
In that sunny room, for that fleeting time, we all were living in “have”. We were having incredible and focused attention paid to our deepest fears and immediate concerns.
We were all lucky. Together.
p.s. The stated mission of the Kansas City CARE Clinic is “…to promote health and wellness by providing quality care, access, research and education to the underserved and all people in our community.” That means insurance or no insurance, if there is an appointment available when you call, you are welcome as a patient. Turning people away is not part of the mission.
These guys were in my room and were my favorites. It’s like they are begging to be set free!
On Monday, World AIDS Day, I accepted an award from the AIDS Service Foundation of Greater Kansas City – the Mark Dreiling Community Leadership Award – for twenty years of passion for the cause. In the days since, I have been asked by five people to publish my remarks. I can’t promise that these words were spoken verbatim, because I only wrote down “bones” for my comments, not a complete script.
On Monday, World AIDS Day, I accepted an award from the AIDS Service Foundation of Greater Kansas City – the Mark Dreiling Community Leadership Award – for twenty years of passion for the cause. It was named after my friend Mark who died several years ago from cancer and who was a fierce believer in eradicating AIDS from this planet – or at least from our town. This award humbled me, as I was the first to receive it after it was given to Mark last year posthumously.
In the days since, I have been asked by five people to publish my remarks – two people I know well, and three I don’t really know but who were at the luncheon and sought me out later that day either in person or via e-mail. Again, I am humbled.
I can’t promise that the words below were spoken verbatim, because I only wrote down “bones” for my comments, not a complete script. I also spoke with a voice quivering with passion partnered with eyes brimming with tears. Here are the remarks.
Thank you very much. When I stand here and think about what I have given to the fight against AIDS, I can honestly say that today I have been involved in the delinquency of minors. There are three young people in the audience who could be at school – I don’t know, maybe learning something! – and instead they are here, and I am deeply touched. To you, Dakota and Sawyer and Zach, I say that you saw the numbers and the facts on screen, and I am looking to you to finish what we’ve all started.
I don’t really know when I began hearing voices – not the bad kinds that tell you to do bad things, but the kind that stick with you and become part of who you are. I can clearly remember my parents saying to me that I could be and do anything. The power of those words has fueled me to almost fifty years of age. To you both, I say thanks.
This particular journey actually started with a phone call from Steve Metzler way back in 2000 asking me to serve on the board of the AIDS Service Foundation. You told me, “There really is no time for orientation. You’ll catch on quick and will like this. You can call me anytime.” And I did all of those things. But not without drive by meetings on our street about things I didn’t understand or that I was questioning. Since then, your voice on the phone and in person as I have considered other commitments and board positions has been priceless. I treasure your friendship and your wisdom.
Which leads me to the next voice. A little boy’s voice at bath time. There isn’t a partner, spouse, parent or child in this room who hasn’t lived through what I call the “Litany of Leaving”. It goes like this: “I am heading out to a meeting. I have done these things before I go, I need you todo these things while I am gone, and when I get back we can accomplish these things.” That is the Litany of Leaving.
On this particular night, my son Dakota was maybe three years old. He was splashing in the tub with my husband dutifully near him because you really don’t want the baby to drown because by three you’ve got so much invested. The dog was on the rug looking at me, the room was moist and damp and happy, and I was leaving. I stepped around the dog, and, as I touched the wet blonde head, his little voice said, “Mom? Is it AIDS again?”
Greater than the sound of the splashes and the rubber toys hitting the side of the tub was this voice that has stuck with me since. “Yes,” I said. It was “AIDS again” that was pulling me away from my family, and I told him – to the point where he probably glazed over but I felt better – that we needed to fight to end AIDS so no one suffered anymore…that what I was doing was important for all of us. I had lost him at the word “yes”, and I knew it.
In the silences and the noise, I hear all of you. All of you who taught me the way of beer busts and garage sales at Missy B’s. Standing with you in darkened theaters waiting for performances to end so that we could greet people with buckets after they had been prevailed upon to give. Standing with the same buckets on 47th and any old street asking for more money. With tiles andglaze and high school students. Through walks and runs and rides and golf games, I have heard you all, and you are with me.
And finally, I hear Mark. I will not stand here and pretend that we were close friends. We were not. But we were friends, and I miss him. We served on two boards together, and I felt I had finally joined an elite club when he let me in on his quiet, biting humor. His deep passion for this cause wore off on me, and we ended up sharing much more than either intended.
The first time he called me “Madame President”, I winced, and then I smiled. I hear his voice every time I speak those words to Missy – and, for that matter, most of the other past presidents with which I share the title.
I am deeply touched that the committee chose me only one year after Mark. Thank you. I will not let Mark’s memory fade.
I have worked with all of you in one way or another for the people in our city who struggle with the stigma and the disease. I have said it a million times – and Michael Lintecum is sick of hearing it! – we are all in this together, and none of us accomplishes great things alone.
I firmly believe that when one of us has AIDS, all of us have AIDS. I promised that little boy in the bathtub a world without AIDS in his lifetime.
Thank you for helping me keep that promise.
p.s. Thank you to Theresa Van Ackeren for taking this photo on Monday and to Tom Styrkowicz for sharing his abilities by capturing that image in the first place…and for charity to boot!
One of the things I do that I love is volunteer at The Nelson-Atkins Museum of Art. Tonight, my volunteer job had me asking people who were coming to see the new exhibit how long they had been members of the Friends of Art.
One of the things I do that I love is volunteer at The Nelson-Atkins Museum of Art. I have vivid memories of the docents that brought paintings into our classroom in 5th grade at Bryant Elementary. My mind sees – and my nose still remembers – the smell of the school bus during our trips to The Nelson from way out in Waldo when we came “down” to see art with our junior high school art teacher.
Tonight, my volunteer job had me asking people who were coming to see the new exhibit, “Modern Mexico”, how long they had been members of the Friends of Art. I loved seeing the answers on their faces before their mouths issued a word. “I joined tonight,” she said with sparkling eyes. “Forever,” said the older gentleman, “I really don’t know. I was a member for a long time, and then I got sick, and now I am a member again.”
Their prize for answering me was that I christened them with a sticker that shared with the world their membership years. I then told them all what their membership does for the museum by keeping it free for the public and open year round. It helps bring art to the schools and bring the schools to the art. Heck, it even helps make free member events like tonight free.
Recently, a staff member at The Nelson told me my number. My years of membership at my museum stunned me a bit. I couldn’t possibly be as old as that number was big! So, tonight I chose two stickers for myself as I was leaving the museum. One is where I am, and one is where I am headed.
I think a quarter of a century sounds fantastic and the number twenty-five seems youthful. Just like me!
p.s. “Frida Kahlo, Diego Rivera and Masterpieces of Modern Mexico” will be at The Nelson-Atkins until August 18, 2013. Don’t miss it. The colors alone will blown you away. Find out more here.
On a Friday night over a week ago, I stood under a tent in a large urban park at a memorial service for no one in particular and for every one on this planet. I held the microphone in my hand and began. Began again. To tell my story of AIDS.
On a Friday night over a week ago, I stood under a tent in a large urban park at a memorial service for no one in particular and for every one on this planet. I held the microphone in my hand and began. Began again. To tell my story of AIDS.
Friday night was a small candlelight ceremony for those who have been lost to HIV/AIDS in our community, and they were celebrated that evening by those under the tent. But I have lost no one. No one I can hold up a photo for. No one I can memorialize on a T-shirt, flag or banner.
I held that microphone as tightly as I hold my son. That was who I was fighting for, I said. Sixteen years ago, I held a newborn boy in my arms as I volunteered for the first time along the route of the AIDS Walk. Months before he was born, a friend had asked me to help. Standing in the grass on a spring morning sounded magical to me in my eighth month of pregnancy. When the day arrived, it was dreamlike. Me, my husband, my new son – all sporting little red ribbons and helping a band entertain walkers and enthusiastic runners in the sun.
Last year’s Walk.
Every year since, I have worked on the Walk and moved up through the volunteer ranks. Route helper, volunteer coordinator, project coordinator, special event committee person, steering committee member, Walk co-chair. Every year since that first one, I’ve had a little hand in mine or a little head in my eyesight on Walk day. My son has never missed a Walk and now joins me as a full-fledged committee member on one event. Walk day is a family reunion for all of us.
My story is short and simple. I desire deeply a world without AIDS for my son. For all sons and daughters and mothers and fathers. Sisters. Brothers. A world free of stigma and hate. Pointed fingers and whispered admonishments will be behind us. Every year I renew my commitment to making that world come to be.
This year I stood in the light rain as my son walked by me carrying a dated memorial flag representing the 25 years of the AIDS Walk. Three long blocks later, I looked up, and there was my niece sporting a flag of her own. This one held the name of someone who no longer walks. She carried it to its final place with the others in a circle of flags that every one of the 2,000+ walkers walked by. My tears were easily covered by Mother Nature’s water show.
They are my future and my chance to live in an AIDS free world. They’ve never known one.
For the last 14 years, I have volunteered on an outreach, education and fundraising project for AIDS Walk Kansas City. And for the past 10 years, STUFF has been a corporate sponsor along with amazing small companies and businesses in Kansas City of the Mosaic Project.
For the last 14 years, I have volunteered on an outreach, education and fundraising project for AIDS Walk Kansas City. And for the past 10 years, STUFF has been a corporate sponsor along with amazing small companies and businesses in Kansas City of the Mosaic Project.
Tiles at the First Friday event this year. April 5th was full of art!
This project is simple. High school students in school districts around Kansas City paint six-by-six inch ceramic tiles in the theme “A World Without AIDS” with glazes in an eleven-color palette. We ask that they watch a short video about the AIDS epidemic that ends with a step-by-step on how to paint a tile. Then, we hope their creativity will fly and that their small artwork will show us a world without AIDS.
The simplicity continues. The tiles are fired, cataloged and finally placed on display en mass during one of the busiest weekends of April, First Friday in Kansas City’s Crossroads District. Thousands of people converge upon this remarkable area of town to live, breath and consume art in its many forms.
This year’s volunteer army!
The simplicity ends in that it takes many, many hours of volunteer time to schlep these tiles all over town, coordinate delivery and retrieval with amazingly generous art teachers, number them, clear coat them, keypunch all the data, manage the two events – public and private – and, finally, inventory and pack it all up for next year.
Which is what I did yesterday with four members of our stunning committee. The generosity of the small businesses – like STUFF – that donate discounted or free tiles, glazes, bowls, labels, artwork, printing, etc., is not wasted. From year to year, if all the supplies are not consumed from the year before, we pack it up and store it for the next go round.
All Mosaic supplies packed up and inventoried. Ready for 2014.
I am so very proud of what we do. We hope young people will spend a few minutes thinking about their fragile health and the world around them and then show us – through art – what their world would be like without AIDS. Many take the time to tell us, in words, and we make sure this story travels with the tile to its collector through the label we adhere to its back. We do this with heavily discounted – but mostly free – supplies and volunteer labor. Then we sell these tiles and raise money for the 5,700 women, children and men living with HIV/AIDS in Kansas City.
It doesn’t get any better than that.
My dream for a world without AIDS is simple. That things like the Mosaic Project cease to be. That our energies will be placed differently because we have beaten this epidemic into the earth.
Until then, I will live in the art, creativity and community this project has enriched my life with. I am one of the lucky ones. It’s that simple.
p.s. The 2013 Mosaic tiles can be seen for the last time as a group (reduced in number due to sales at the April 5th event) at the 25th Annual AIDS Walk. April 27th in Theis Park. Right in front of The Nelson. Come and see them and take a great piece of art home to remind you what a glorious place a world without AIDS would be. Art lives!
Continue reading “Black Lives Matter. Period.”
