Since last September, in preparation of Test Positive Aware Network's ( TPA's ) 30th-anniversary celebration, I've heard and read several accounts about the beginning of TPA and even more during the event and afterward. I've been very disturbed at the number of inaccuracies in so many of these stories and feel the need set the record "straight" to ensure the history of TPA, and those first incredibly brave members who made such crucial contributions, is accurately preserved.
I came to TPA, along with my dear friend Michael Blackwell, in support of our friend Patrick Conley. Michael and Patrick were like brothers. Patrick had recently found out he was HIV-positive. At the same time, Patrick learned about a group of guys who were also positive and getting together each week to support one another and share whatever information they could find on the virus. This was within the first month or so of the organization forming.
At the time, there were either 14 or 16 members. It was July 1987. Patrick had been given cryptic directions to one of the meeting spaces at The Rodde Center, Chicago's gay community center. In following his notes, we found our way down an alley to this beautiful courtyard behind the white building on the east side of Sheffield at Belmont. Despite so many nights at Berlin, I was shocked I never knew about this beautiful oasis privately tucked away from the hustle and bustle of the area. There was a light on in one of the spaces and we headed toward it. The meeting space had less than a dozen guys sitting in a circle, each in a rickety metal folding chair talking with one another.
As we walked in, Patrick quickly told the guys who he was and who had told him about the meeting. Given the pervasive hysteria and paranoia in the community, it was crucial Patrick mention who his contact was. Otherwise, the three of us would have appeared as a threat. Once the group realized Patrick was legitimate, we were welcomed with open arms. This careful word of mouth is how TPA started to grow. It would be close to two years before the membership felt safe enough to put Test Positive Aware's name on the front door.
Unfortunately, of the original handful of men who courageously started TPA, only a few are still alive. For the record, the only original member involved in the TPAN 30-year event was Bill Rydwels. No other person involved in the event was one of the original members.
I think it's extremely important to reiterate another crucial fact about TPA. The organization was started, or founded, by Chris Clason. He is the one and the only founder of TPA. There should be no confusion over this point. No one other than Chris Clason should be considered a founder or given credit for being one. Given the climate of fear and imminent death over the illness in 1987, it was Chris Clason who took it upon himself to courageously place an ad in the Windy City Times in June of that year inviting people who were HIV-positive and looking for answers and information to call him about starting a support group. Chris received well over a dozen calls and spoke at length with each person to determine if the support group could help them. He was also taking the time to screen out people who did not belong in the group to insure the safety of the members. Chris wanted to make sure the organization he was starting would be a safe place for so many people who were faced with such intense uncertainty, hatred, prejudice and physical harm.
Another clarification of the truth I feel needs to be made is the extent of Chris Clason's involvement in the TPA. First of all, Chris worked tirelessly for the organization. He did everything all by himself. He was deeply committed to providing all the answers and latest information he could to the members. He worked full time on TPA and rarely received any compensation from the organization. The money that was collected when the hat was passed went to help pay the rent, not Chris.
Chris was solely responsible for deciding the subject matter of all the twice-weekly presentations and securing all the speakers. Chris took this very seriously and never allowed anyone to assume this responsibility. Even though members would suggest topics or speakers to be presented, at no time did anyone other than Chris schedule speakers and only on a very rare occasion did any member ever become a speaker. There was only one time I can remember when this happened. It was a successful, very effective session, yet the member declined to speak again.
A claim has been made that a member of TPA gave lectures and 'prepared' other members for death. Not only is this not true, it puts forth a very maudlin and depressing tone of the organization. Nothing could be further from the truth. TPA was not a support group for the dying. It was a place where people came to learn how to live. Everything about TPA was positive and uplifting. It was a place where guys could let go of their shame. When people walked into the meetings they felt a sense of warmth, a sense of relief and acceptance, a sense of community and family. They always felt hope, many for the first time. With Chris disseminating so much information about the virus and the options people had, it made members feel empowered. It was a very uplifting experience, an incredible gift to everyone who walked through the door. This camaraderie, empowerment, hope and sense of community is what kept people coming back week after week. There was nothing morose about TPA and there was absolutely no 'preparing members for death' as has been purported.
Chris structured TPA so meetings were held every week on Tuesday and Friday nights. After each of the presentations was over, Chris had the idea to give each of the members a chance to say goodbye for the evening. Each member, one by one, was given the opportunity to say whatever they wanted to voice to the group. For some, it was a chance to say goodbye to someone who had died. To others, it was a chance to ask the group for help with something. Many told the group of their test results, accomplishments, feedback about something they'd heard or tried, something they were thankful for or concerned about, even their HIV coming out stories. Chris wanted to make sure each of the members used their voice in the group since some people were reluctant to ask questions during the meeting. By taking part in the Byes, it helped many members become comfortable enough to speak up and say whatever they wanted the group to know. Again, the Byes was Chris Clason's idea.
Once Chris noticed so many new members showing up for the first time week after week, he started an Orientation Program to help new members acclimate to TPA. One of the most important messages he wanted to convey to the new members was that the members of TPA protected one another's confidentiality, that TPA was a safe place to be open and honest. If members saw other members outside of the meetings, they knew to respect that person's privacy and not acknowledge them. Someone's status was not for anyone else to announce or discuss unless they had direct permission. TPA held to this. In my years of involvement with TPA, I never heard of anyone compromising somebody else's privacy or status.
Chris also used the Orientation Program to help new members understand TPA's objective, what they should expect from the meetings and membership, schedule of presentations, etc. He wanted them to understand that they would be hearing a lot of answers to questions and problems that HIV people experience. Chris wanted new members to understand what might work for one person wouldn't necessarily work for everyone. He wanted them to understand there were many answers to a question or concern.
Chris also felt spending a half hour before the regular meeting with new members would help them feel more comfortable at first meetings because they would have just met 4-7 new people in their 30-minute session. By introducing new people to each other before they went to a general meeting, Chris was able to give new members a small support group of their own. This made walking into a big group meeting less intimidating. It also made people less anxious. Part of the objective with these Orientation sessions was to make new members feel comfortable faster and not so alone.
After a while, Chris had too many responsibilities with the organization to continue doing the Orientation meetings himself. At that point, TPA had 10-18 new members each week wanting to join. Chris decided to ask some of the very first members to help with the Orientation Program. He specifically chose Bill Rydwels, one of the original members, George Paris and Jerry Baumgarten, both very early members, to take over the Orientation Program. Only these three gentlemen took the new members and split them up into three groups and took each group into a private room for their 30-minute meeting. At no time did anyone else lead Orientation.
I think it is extremely important to point out at no time was the Orientation Program about assessing someone's mental health. Nobody who ever came to TPA was schizophrenic, bi-polar or dangerous to oneself which has been purported. The organization never had any outbursts from any member, something else that has been purported. Again, the Orientation Program was Chris Clason's idea.
Chris Clason also started a Friends Program for guys who were brand new to TPA. This gave the new members someone they could talk to who knew a lot about HIV and the community because they'd been attending TPA for a significant amount of time. This was also important because concerns and questions came up for new members on days when there weren't meetings. Making these connections gave the new members someone to talk to about anything at any time.
During 1987, the American Medical Association ( AMA ) offered free Tai Chi classes to the public two nights a week. Patrick, Michael, and I took advantage of these classes because they were so helpful to Patrick. They were very relaxing to him and enabled Patrick to manage his anxiety, something that plagued a lot the guys who were symptomatic. Dr. Hannah Hedrick, Director of the Division of Medical Education Products for the AMA, led the classes on one of the top floors of the building. She was absolutely wonderful. The energy emanating from her was both spectacular and addictive. One evening as the three of us were getting ready to leave, Hannah overheard us talking about heading over to TPA and she asked us what TPA was. We explained it was a support group for the HIV/AIDS community and before we knew it, Hannah was headed to TPA with us. Once there, she did what she usually does in a group setting. She started giving the members back rubs. She would massage shoulders, necks, backs, etc. to help people relax and feel better. Pretty soon, I joined Hannah and together we moved through the rows of guys helping them relax. The two of us doing massage during the meetings became commonplace and it seemed to help a lot of the members. At no time did either of us conduct massage seminars or start conducting 'group work' with the massage as has been purported. It was never that complicated. The meetings would begin and we just started at the back of the room and worked our way to the front. It was nothing fancy. The only classes that grew out of the massages were Hannah's yoga and Tai Chi classes for the membership. These classes were held before the big general meetings. These started after TPA moved to the Belmont space once it was renovated. TPA would have been about a year old at the time.
Hannah and I would also visit members in the hospital pretty regularly. We would take them things they needed and invariably take advantage of the time to massage their feet, legs, hands and arms. The nursing staffs were always very supportive of our involvement with the members. It wasn't unusual for a couple members to be admitted at the same time. That said, at no time did TPA members 'fill the wards' as has been purported or were any visitors allowed on the floors in the very late hours of the night or very early hours of the morning. None of the members I knew who were in the hospital were ever awake at those hours and visitors wouldn't have been allowed onto the floors especially not to simply 'go up and down the halls.'
Given all the hospital visits Hannah and I made either together or separately, I never remember hearing or witnessing anyone 'thrashing around in their beds covered with Kaposi Sarcoma.' And the comment that 'Chicago was Auschwitz' is simply untrue and offensive not only to the guys who were admitted, but also to the medical staffs and facilities. The care all the members, and those who were not, received while in the hospitals, especially at Illinois Masonic, St. Joseph's, Northwestern and Rush, was extraordinary. They had warm beds with fresh sheets and extremely attentive, dedicated and compassionate staffs. They had hot meals, and plenty of medicine and IVs to keep them comfortable. They could see their families and friends, etc., etc., etc. Their experience was nothing like that of the people who suffered in Auschwitz.
Furthermore, these hospitals never asked us to wear masks, gloves, gowns or any other protective garb. The only hospital that had HIV/AIDS patients and required this of the visitors was Thorek and I never knew anyone who was admitted there. Their requirement was definitely the exception and not at all the norm.
In the beginning of TPA, we didn't pay rent at Rodde Center spaces. Once we moved to the big space on Belmont, we had to start passing the hat. Unfortunately, the hat never had enough to pay rent let alone compensate Chris. To cover the shortfalls each month, Chris and Bill Rizzo, one of the original members, planned fundraisers which were social events. Even though these helped a lot, there were many months Hannah Hedrick and Bill Rizzo quietly paid the rent. Because the organization had so many principals with HIV, the landlord insisted someone without HIV sign the lease. Hedrick stepped up with no hesitation, signed the lease and made sure TPA always had a place to meet. There are no other surviving members who volunteered money for rent "month after month," as has been purported.
One other point I want to clarify is the organization never received a donation from Oprah Winfrey. That isn't to say she wasn't concerned. We all knew she was because we saw how well she took care of Bill Rizzo, one of her first producers. But to continually mention her name in relation to TPA and imply her involvement is simply not true. It leaves one with the impression TPA is trying to ride her coat tails just because of her fame. This is something Chris Clason never would have allowed.
I hope these facts, compiled by the three of us, give our community an accurate account of how TPA started. I also hope these clarifications give credit to those individuals who made such incredible contributions to ensure the organization evolved into the vital community resource TPAN has become.
Images by Billy Howard from the book Epitaphs for the Living: Words and Images in the Time of AIDS, SMU Press, 1989. All images, negatives and correspondence are archived in the Stuart A. Rose Manuscript, Archives, and Rare Book Library at Emory University. See findingaids.library.emory.edu/documents/howard1365/ .