Outreach

Please take a moment and read the speech on HIV as a social justice issue given by our CEO Jenny Englerth during the public reception for our AIDS Memorial Quilt event – “His Story. Her Story. Our History.”

Twenty-five years ago HIV/AIDS elicited fear, confusion, and anger from so many across the nation. So much so that a young boy with hemophilia and HIV named Ryan White who just wanted to go to school in my home state of Indiana made the national news.

In our community, 25 years ago a handful of people chose love and compassion over the fear and confusion. I share with pride and gratitude that Family First Health made the choice to do something, even when the path was not clearly defined, people needed care not health care just care. This evening we recognize those people and their efforts, those that are here with us and those didn�t make it through the early days of this pandemic.

Politics and lack of information fueled a response that left so many vulnerable. The disproportionate impact on the gay community was undeniable but resulted in a movement that shaped me and so many others personally and professionally.

Advocacy, education and care were taken on by the community impacted by the disease. This resulted in everything from legislation and funding named after the boy who just wanted to go to school to evidence-based medication and treatment to testing and prevention efforts that work to prevent transmission to programs like Caring Together that continue to evolve based on a balance of good medicine and consumer direction.

I looked at my bulletin board this morning a saw a button that I hadn�t taken notice of a long time. It was from a quilt display in 1996 and asked, How Many Names Will It Take? That question
is as relevant today as it was then. I am not suggesting we have not made strides, we see people living long and healthy lives with HIV due to great treatment options that were only imagined at that time, we see dramatic reductions in new infections overall and we rarely if ever see infant infection in the developed world. But, like with most other health conditions, there are communities that are disproportionately impacted. And until those inequities, most often based on race or place are addressed there will be more names.

FFH and our Caring Together program will continue its work but it is up to each of us to look upstream for the root causes of diseases like HIV and take action. Fight for a system that ensures that we all have access to the information, insurance, prevention, care, and treatment that we deserve. Only then will we stop adding names to the list.

As I viewed the panels yesterday with some of the people that will share their story in the video we are about to watch, I was struck by many things; the names and faces that I remembered (Carol, Tommy, Greg, John, Regina, Chris, Joseph, Marty, Maizy) people I hadn�t thought about in years I could suddenly vividly recall.

I was struck by the dates, the slice of an entire generation that was lost, the potential, the contributions and diversity of thought lost.

But most importantly, I was struck by devotion of family, friends and supporters that created and stitched panels and sent them off to be joined with others that will forever be bound together as a reminder to all of us, not a reminder of their death but as a reminder that they lived.

See more photos from our events taken by Digital Ephemera Photography.

Cassandra Inkrote was born weighing 1.5 pounds. Her grandmother, Sandra Bones said she knew right away � AIDS.

Cassie’s mother was HIV positive, but back in the early 1990s, not a whole lot was known about transmission and how to protect the unborn babies of those already positive. Breathing problems that got worse once Cassie got home led doctors to the diagnosis. They told Bones that they’d have about a year. But if Cassie made it past the year, she’d be OK.

“She was a very good baby for being sick,” Bones said. “Very good. She went through a lot but was very loved every day.”

Even in photos of her at the hospital � Cassie had three trips to the University of Maryland hospital � her bright eyes light up each photo her grandmother holds dear, even the ones in which she’s in pain.

When Cassie hit the year mark, Bones thought she’d be all right. “Our hopes were up,” she said. “We thought she’s going to make it.” It was only two weeks later that Cassie started hemorrhaging and returned to the University of Maryland.

Bones spent a lot of time in the hospital � she was by Cassie’s side for the last three days of her life. The doctors said she was getting better, so Bones rode the bus back to York to get some clothes. By the time she got home, her husband had gotten the call. Bring the family, it’s time to come. They all went down at in the end, it was a tough decision to pull the plug. “Let her go with dignity,” Bones said. Once goodbyes were said, it was done.

In the moments after Cassie drifted away, the doctor asked a huge favor. There was another little boy on life support and the family was struggling with the decision. So just after saying goodbye to Cassie, Bones went to talk to the mother. It was about dignity, after all.

Bones then returned to bathe and dress Cassie. “I turned her loose, but it still hurts,” she said. “It’s going to hurt.”

Soon after Cassie’s death, Bones wanted to help, so she became a buddy for those also living with AIDS. She was paired up with a woman for awhile, until she entered hospice. Then another young woman, who also ended up succumbing to the disease. “I always wanted to work with other babies,” she said. “But I never got the chance. I would have taken one in.”

A few months after Cassie’s death, Bones started working on a quilt for the NAMES Project in her honor. On the light pink swatch, there are a handful of little things from the girl’s short, well-loved life � a rabbit she had, pieces of blankets she had. Bones saw the quilt a few times and then never heard anything else. In her mind, she thought maybe the entire thing was gone.

That is, until a coordinator at the home she lives at in West Manchester Township saw a story in the paper. It was about a mother who lost her son to AIDS, and whose quilt was finally coming home. The coordinator knew Bones was looking for the quilt, so she grabbed the number of the person who wrote the story. And she called � two weeks before the AIDS Memorial Quilt panels were to arrive in York.

The writer told her, with trepidation, that the quilts had already been requested, but yes, they still exist. And after telling Bones about the events, thought she might just run the name and see Cassie’s quilt. Cassie was, in fact, already coming home. Her little pink panel sits on the bottom of the one with Steve Weigel, Rick Bowers and those lost at York House Hospice.

“I was so happy, I was on such a high that day,” Bones said. She went to tell her husband, and he laughed. Of course she’s coming home. Bones has plans to bring many of her nine children to the public reception. One will accompany her on Friday. And on Saturday, she’ll be at the Serenity Garden of Hope to plant perennials for Cassie.

Cassie’s mother lived until 2007. Cassie’s death was something she � and all of them � struggled and continue to struggle with. HIV/AIDS is part of their lives forever.

Bones sits next to a framed photo of Cassie on a cloth about the NAMES Project and the AIDS Memorial Quilt. Above the TV, next to an angel sits another photo of Cassie with the words “shining star.” She speaks of a Rice Krispies’ bank Cassie had. Whenever you put money in it, it would “snap, crackle and pop.” After her death, it would still sometimes snap, crackle and pop. Bones and her husband would laugh, saying “she’s going at it, again.”

“After 25 years, she’s still here with me,” Bones said.

Rick Bowers didn’t want to be another number.

It was actually 1986 and while�on his second date with Scott Smith that he disclosed he had AIDS, Smith recalled. Bowers had been diagnosed six�months before the two started dating.

“It didn’t really bother me much at all,” Smith said. “I’ve dealt with cancers, strokes through family. For me it was one of those things. It was part of Rick .. something you dealt with.�� We learned what needed to be done to maintain his health and other things. It goes to say a lot about Rick. Today I’m still HIV�negative.”

Not wanting to be a statistic was something that weighed heavily on Bowers. Even when the two went to get tested every three months. “It’s not just Rick and Scott,” Smith said. “It’s this number and this number, from files. Everything we did, we were just a number.” Even with AIDS was talked about in the news, it was a count of statistics, Smith said. It was 12,000 infected, never the 10,000 who are surviving and living a life. There was never talk of doing what needed to be done to either “beat this or at least extend it.”

One of Bowers’ biggest regrets was not making it down to the�March on Washington. In the months after his death, Smith was looking for a way to honor his partner. He joined the Open Group as a buddy, working with those who were living with HIV/AIDS. Then came the AIDS Memorial Quilt.

“When we�started on the�quilt, it was once again another number,” Smith said, noting the size of the panels and all the requirements.�”By adding Rick to the quilt it became not a number, it became something personal. You see the pictures. You see the dates. You see everything right in front of you rather than just another number panel.”

Five friends helped Smith with Bowers’ AIDS Memorial quilt. Three of them have since died from AIDS. “It’s not always here with us, but it’s out there and we know it’s out there.”

For Smith, it’s all about education. Most people don’t start talking about HIV/AIDS until early November and that’s only ahead of World AIDS Day. Smith used to speak�to school groups and churches, something he said needs to start up again. It’s something he wants people to think about when his partner’s AIDS Memorial quilt panel comes home June 23.

Last time the quilt was here in 1994, Smith said the turnout was much bigger than expected. The biggest thing people didn’t realize, he said, was that it was personal. “Yes, we did lose,” he said. “But we still have them here.” And this time? “Rick’s coming back home again,” he said. “It’s something York needs itself. To reawaken and so there’s not a lot more statistics.”

“It’s going to be tough. It’s going to be welcomed with being able to personally see the panel again,” Smith said. “The biggest thing is it’s the fact that you’re not only getting to see the panel and everything, it’s going to bring back memories, good and bad, that we had that we dealt with at the time and everything. The biggest part goes back to education.”

Despite the pain, those memories still make Smith smile. And it was his husband, Dwayne, who encouraged him to reach out and see if they could bring Bowers home. On the quilt, Smith said from memory is: roses -�Bowers’ favorite flower – a photo of him, a teddy bear and the number 77.

The teddy bear represents Scotty Jr. The first time Bowers was in the hospital with full-blown AIDS, Smith came to visit with a bear. Bowers named it Scotty Jr. and said it’s “something here with me when you can’t be.” When the two were together from 1986 to 1993, they couldn’t publicly say “I love you,” so instead they said 77. It had to be on the quilt.

Smith hopes that by bringing Bowers home again – along with several other area panels � some may see the AIDS Memorial quilt for the first time. Kids are graduating from high school and don’t know that HIV/AIDS is something they should be aware of. He wants them to see Bowers and what he wanted his life and�death to stand for � education. “AIDS/HIV is still out there. It still needs to be looked at, still needs to be publicized,” Smith said. “It’s not a thing of the past. It’s still here. It’s still current.”

“We lost Rick too soon,” Smith said, adding that his favorite memory was helping raise Bowers’ son from age 4 to 8. The two still spoke weekly until about a year ago and he hopes to bring him to the quilt. But it will be hard, Smith said. And it will bring back up the hardest thing Smith deals with: “Knowing that pretty much no matter what he did or what I did it wasn’t going to be good enough. We were going to lose him.”

It’s something you never get over, Mary Jane Sanders says simply. When you have a child, you love that child. “You think about what they go through. … You often wonder who he would have been.”

Sanders always wanted to be a grandmother. But she knew it wouldn’t happen the traditional way, once her son Steven told her he was gay. He moved out to California where he worked as a waiter. Sanders laughs as she said she knew he had a lot of friends � a lot of partners. But then he met someone special and was really happy. In the height of the AIDS epidemic, they wanted to be sure so they went to get tested.

Then Steve called home.

“That was, for me, the beginning of the end,” his mother said. “I knew and he knew there was nothing out there to help him.”

Every morning, Sanders starts her day by getting out of bed and saying “Good morning” to the portrait of her son that hangs in her bedroom.

“He was my only child. He was the light of my life,” she said. “I just really love my son and really miss my son. People say God giveth and taketh away and I have to cope with this.”

After Steve’s death, Sanders got active in The Open Group. The group � mostly mothers of those who died from AIDS � wanted to reach out and help others living with AIDS. They wanted to support the mothers, but the mothers found hosting monthly dinners helped in their grief. And it gave them a new family to rely on.� “It was sad. As they died, it was hard. But it helped us,” she said. “You fell in love with them. You knew how they were feeling.”

Buried deep inside the warehouse that holds the 12-by-12-foot panels of the AIDS Quilt, is one dedicated to Steve. A group of about 15 people from her old job in the Central York Middle School came together to put it together for Steve. In it, you’ll see Steve’s cats, old middle school, references to San Francisco and Tahoe � where they had a home. You’ll also see a note that says “always in my heart, Mom” and some children. He called her once from the hospital toward the end during a bout of pneumonia. “He said Jesus loves all the children in the world. Why can’t we just love each other?”

That’s what Sanders wants people to see when they view the quilt � her Steve. He was happy go lucky. He put people at ease. He was always on the go. In the center of the quilt is a picture of Steve. She wants you to see reflected in his smile that he was a kind and loving person. He was a good son. “See his 36 good years on this earth and that he loved and helped people.”

Sanders has seen Steve’s quilt since the day they sent it to the Naming Project. In fact, she and one of Steve’s friends from California went down to see it in Washington D.C., on the National Mall. It was overwhelming, Sanders recalled. “There were so many quilts. … It brought back a lot of memories, a lot of heartache … All of these people have lost loves ones to this disease.”

And when she sees Steve’s quilt this time, she’ll see it with her family of others who have lost their loved ones to AIDS. It will be hard, Sanders admits. “But it will make us closer.” That’s what their sons did. They never knew each other in life, but they brought their mothers together as family.

“People don’t realize what we lost,” she said. “People didn’t care about it. They thought ‘as long as I don’t have AIDS, it’s all right.'”

There’s another thing Sanders wants people to take from seeing her son’s quilt � awareness. “This will bring awareness to those people (living with AIDS) � that there is help, hoping for a cure.”

And we haven’t forgotten.

(Photo and video by Randy Flaum, York Storyman.)

Shelia showed up at the doorstep of the Duke Street brownstone holding a paper bag full of nightgowns. She asked simply, “Can I die here?”

The answer was always yes.

From 1990 to 1995, York House Hospice always said yes. And it provided a place of comfort and dignity for the 95 people who died there.

Sitting on her front porch, Joy (Ufema) Counsel, founder of York House Hospice, and Dr. David Hawk, its medical director, sit side-by-side on a swing recounting their time in that home. Listening in, it seems like an intimate conversation between colleagues � friends � who may have over time forgotten the impact they had.

Back when the hospice opened, both recalled York was around third in the state when it came to AIDS. “Others weren’t doing as much testing,” Hawk recalled. “The need was there.”

With a $1 down payment on a house and a promise to pay property taxes, Counsel opened York Home Hospice to feed that need, and brought on Hawk as the medical director. “The drive was there, the fire in the belly,” Counsel said.

Back then, there was fear, prejudice and misunderstanding, the two said. But their role was to offer comfort. Dignity. Joy. A place to “carry our brother,” Counsel said, referring to the fact that they did not have an elevator and rather chose to carry down the sick and dying.

For Counsel, the work was a continuation of her years working as a nurse with death and dying. For Hawk, it was different. “As a medical professional, it was hard to not be able to help,” he said. “It was a real learning experience,” he said turning to Counsel. “You taught me a lot about death and dying. And I’m thankful for that.”

Often times, it was in moments they couldn’t be sure were even real. But for the patients, it was. Counsel spoke of Bernie and how the day before he died, he called her to his bedside. He called out “Do you see them, Joy?” She admitted she could not. But said, “They’re here for you. You can go with them, you’re safe.” The next day, she brought Hawk to his bedside and asked if the others were still there. Bernie mustered all the strength he had to get up on his elbows and look to the left. “No, they’re not here now.”

“That was the first time for me as a medical person that I thought, there really area things we don’t understand about the dying process,” Hawk said. “� It was an invaluable experience that we offered � to be there. ”

The two go on, speaking of other patients � a 5-year-old named Booboo; Shelia and those nightgowns; Steve and the day of his death. Counsel turned to Hawk saying quietly, “I think we made a difference, don’t you?” “Yes,” he answered. Five years in, the need started to dwindle for hospice services. The two thank education, and said that while people were still living and dying with AIDS, families and loved ones understood it more and were willing to care for them at home. “We had a good thing going,” Hawk said.

Before then, there was just so much fear, they said. Hawk spoke of nurses who said they would walk off the hospital floor if an AIDS patient was brought to them. It was hysteria, Counsel said. There was a reluctance to believe public health officials. The president didn’t even address it or speak the word AIDS.

“This was such a wonderful learning experience for me,” Hawk said. “There were living things going on right before my eyes that I never saw in medical school.” For many doctors, Hawk said, when someone is told they’re going to die, the doctor’s job is over. In that Duke Street brownstone, it was just beginning. “We just didn’t have all the arrows in our quiver,” Hawk said.

“That house was a place of joy, respect,” Counsel said, wavering off.

“Comfort,” Hawk replied. “Yes, comfort,” Counsel said. “Comfort and dignity,” he said, gazing off onto the farm.

And when the AIDS Memorial Quilt came around, Counsel said it changed the game when it came to grieving. “None of us wanted our loved ones forgotten,” she said. “This was mine.”

“It’s remarkable from where we’ve come,” Hawk said. “Wouldn’t it be nice if we got here sooner?”

The pair continued talking of the old days, with Counsel’s partner, Linda, whispering later that she worries that after their retirements, the two lost sight of the work they’d done � the lives they changed.

When 12 panels from the AIDS Memorial Quilt are hung in Marketview Arts this month, Counsel and Hawk know they’ll see some of their patients. They know they’ll see some of those family members they helped then � who the quilt is helping now as their sons and partners come home once more.

What do they want those loved ones to know? The two sat quietly for a moment with only the sound of the birds and buzzing bees.

Slowly, Counsel formed her thought: “It was a horrific plague that we couldn’t stop. And that their deaths had meaning. It was almost their deaths paved the way for learning about the disease and treatment.”

Hawk smiled at her, looked up, and with tears in his eyes, said, “I just hope that they remember their loved ones and … that we did the best we could.”

Video and photo by Randy Flaum, York Storyman.