Exhibition Guide

This entry is dedicated to Evelyn L. Nicholson
February 7, 1958–August 6, 2023

Visual Description:

A figure appearing as a woman with dark skin sits on a slatted, backless metal bench outdoors. She twists her body to her left to face the camera. She wears dark blue pants and a white T-shirt that partially reads “CQUES.”  The background includes two brick buildings, flowers in a raised planter, manicured bushes, and trees.

Full Testimony:

I’m Evelyn Nicholson. I work as a community health worker (CHW) for the University of Maryland at the Institute of Human Virology.

You can come here every day and get your HIV medication; in case you can’t take it home or you are transient or whatever. I meet very interesting people here: you never know where people have been, and what they’ve done until you sit down and talk to them. I’ve met doctors, lawyers, teachers, dancers. They are all coming through the door for help.

As a CHW, I’m here to help if I can, to inform, and to empower. You know, I listen. A lot of people fail to realize that listening is all people need sometimes. They just want somebody to hear them out. You can sit there and just listen. You don’t have to give an opinion, don’t have to ask questions. They just want you to listen, and that makes a whole lot of difference.

I really don’t know where my compassion comes from. I think I’ve always had it. There are a lot of people with HIV who don’t have anybody to talk to about it. I know what that’s like to hold stuff in, try to hide it and stuff. So, I think that helped bring me to what I do now. When I was diagnosed 30-some years ago, it was taboo back then. You didn’t talk about it. You know, people shunned you. The hospitals treated you badly. I started drinking, but you know that didn’t help. It was my way of coping. I was told I’m going to die. But we’ve come a long way since then. When I got it, they told me, “Get your stuff in order. You’ll be dead in three months.” It’s now thirty years later.

I’m an honest person because I don’t like being lied to. I’d rather you come at me truthfully than to lie to me, even if it’s something that’s gonna hurt me. You can tell me and not be hurtful with the way you say it. Because you can tell if something’s going on with someone, and it could be the most devastating thing. But if you say it in a certain way, it doesn’t feel as bad.

You got doctors that’ll come in and just be straight-out blunt. I had a client that was newly diagnosed with HIV come in upset—a young person, thinking they are gonna die. That doctor came in, said, “You got HIV,” and left. It makes you feel like you’re being judged, like you don’t have feelings, like you’re less than. Regardless of anything, you’re human. I try to remember that about any situation. I don’t like doctors that bring bad manners. They say a doctor is supposed to have a bedside manner. Just like each individual is different, each case is different. You have to think about the person that you’re dealing with—what they’re going through, and do they have support— before you deliver any kind of messages or diagnosis. Have some resources ready for them.

My psychiatrist sent me here because I was interested in volunteering for those with HIV. She said this might be a good fit for me because of the support group here, and I’d be doing things I like doing. The support group is awesome. You can come here and just be open because everybody in the room has the same thing. That takes a lot of weight off. I’ve met people who have had this for 25, 30 years and haven’t told their family. So, this right here is a way for them to talk about it, what they are going through, what they are feeling, and things like that. I can’t say, as far as some things go, that I really experienced anything bad because I sit there, and I hear different stories from other people that are HIV positive. It tears your heart out how their families treated them. My family was there for anything I needed. So, I’ve had support.

They thought that what I was doing here was so interesting that they got a contract with the University, so that I could work here with people with HIV through a program called Linkage to Care Plus. So, now all the things I was already doing before I still do as a CHW. The JACQUES Initiative is here, and they do Linkage to Care Plus as a component.

We have three components. You have JI, which is the Journey Center. Then you have TAC, Treatment Adherence Center, and then you have the THRIVE Clinic. So, there’s three different components all under the umbrella of the University of Maryland.

I participate in the support group, and some of the participants are also my clients.

So, I meet my clients, both people that were diagnosed with HIV or newly diagnosed, at the hospital and talk to them and stuff, to see if they wanted to become part of our program. I try to empower a newly diagnosed person. I let them know that it’s not the end of the world, but about you living. It’s not about dying no more. All you gotta do is your part. People aren’t really dying of HIV no more. They die from complications, but some people still believe that it’s a death sentence. I try and explain that to my clients. At first, I would follow them for three months after they got out the hospital, but we found that we couldn’t do those major things that needed to be done in a three-month period. Now we follow people as long as they need it.

When I started working with people with HIV, we saw people had co-morbidities. We found that we were having a lot of clients with cancer, diabetes, high blood pressure—things of that nature. So, I would go to those appointments with them and try to learn as much as I could. What to do for high blood pressure; what they shouldn’t be doing. If they have cancer, what should they be doing. Do they have to have a certain diet? Those kinds of things. That’s how I met other CHWs. I found out that there was a CHW at the cancer center. So, we connected about a client.

If we found out they were homeless, we made sure they would have a place to go when they left the hospital. We did home visits. If I go to your house and I see you don’t have any food, you may not tell me that, but I’m looking around and may notice.

I’ll say, “Well, I ain’t seen any food in the refrigerator. I ain’t seen this, that or the other.” We’re also gonna check and make sure that the house is safe.

I work with a nurse and a social worker now, so all three of us work together with clients to see that their needs are met. If they need mental healthcare, our social worker specializes in mental health. The nurse takes care of blood pressure, wounds, and stuff like that. We get them back and forth to appointments. We try to do whatever it takes to keep them from ending up back in the hospital.

I am a social person. I sit there, and I talk to you. I will try to find out what’s going on. We’ve had people commit suicide and stuff like that. I’ve talked to people that were contemplating it, and I wasn’t sure I should deal with this. So, I would call and say, “Hey, I think somebody else needs to talk to them because they sound like they wanna commit suicide.” I’m friends with some clients on Facebook, and that’s how I keep track of them. If they are going through something that don’t sound right, and I don’t get no answer, then I may call my boss and say, “Can you reach out to so-and-so?

Because they posted such-and-such and it don’t sound right.” I use whatever means I can to keep in contact.

I still reach out to clients that I started out with five years ago who are no longer part of the program. Some of them still reach out to me, “ Ms. Evelyn, such-and-such is going on. You know who I can talk to? Can you help me get an appointment?” I’ll go to appointments with you. I’ll go to Social Services with you. I’ll do whatever or go wherever you need me to go. Help you do your paperwork. Whatever that’s gonna help get you from A to B.

I will know if you ain’t took your medicine in eight months, and we have to run to the doctor. I say, “Don’t you wanna tell him something?” They say, “No.” “Don’t you need to tell him something?” I try to leave the door open for the client to say it themselves. It’s not really my place to say it for them. I want them to feel comfortable enough to say, “Look, the medicine was making me sick, so I ain’t taken it.” Or “I stopped taking my medicine.” But don’t sit there and jive around and say, “Oh, I took it.” He can look right at your labs and tell you ain’t took that medicine. You know? So, it’s best to be honest.

A client was saying, “I’m tired of this. I can’t do this. I wanna step back.” I said, “No, sis. Step back. Take yourself out of the picture and look at it in a couple of different ways, and you usually can work things out like that.” I tell my clients: “Write down the benefits of you using, what you are gonna get if you use, and what you are gonna lose. Then, you tell me what you come up with.” I said, “You don’t have to just use it as far as drugs and all. It can be applied to anything in your life.” Then, I have them make a goal plan. We work on small goals first, then a medium goal. When you leave my program, I hope that you are working on your long-term goal. We do it like that. You gotta take baby steps with some people. Some people are ready, some people are not. You can’t turn your back on the one that’s not ready. I just let them know, “I gotta let you loose now. But I’m always there for you. And when you’re ready, call me. You know my number.”

I’ve had quite a few come back. One young lady has been back three times. I have other clients that may have stopped talking; I may not hear from them for a year or two. Then, all of a sudden, I get a phone call, “Ms. Evelyn, I ain’t been to see the doctor. Can you make me an appointment?” I say, “How about this? How about you make you an appointment? You show me that you are putting a foot forward, and I will help push you two feet forward.”

One time the University was talking about having a dress code, and I told my boss, “We can’t have a dress code.” Everybody was like, “Evelyn, what you mean?” I said, “People ain’t gonna talk to us if we’re running around here in suits, all dressed up and stuff. If you want this program to work you have to let us dress the way that the people in the street dress,” and the director agreed. Everybody wanted to wear gear, and I said no gear, nothing that says JACQUES. A t-shirt is good; that works for me. I don’t need a jacket or all that kind stuff hollering JACQUES, JACQUES, JACQUES. Because everyone doesn’t want it known that they’re associated with JACQUES because it’s known for being an HIV clinic. Everybody hasn’t come out and told everybody who they are, or where they go, or what’s wrong with them. So, that’s breaking the anonymity.

Everything that I did led up to when I got offered this job to work with a nurse named Marik Moen, well, Dr. Moen now. She got a doctorate in the last couple years. She’s the one that presented the program to me. I remember she said, “We want to try something to see if we can bring the rate of hospital visits down.” That’s how this whole program started. She said, “I’ll take you out.

You’re gonna meet the people. You’ll be accessible to them to talk about whatever they want and stuff.” We found that clients would tell us stuff that they won’t tell a doctor, so you’re like that middle piece, that connecting piece. I love Dr. Moen. She’s like no other white woman I’ve ever met. She goes down into the trenches with us. She doesn’t ask you to do nothing that she won’t do herself. She goes above and beyond. I take phone calls all night long. She takes phone calls all night long and will go get you and everything. One of the clients called, saying they got put out of their transitional house. It’s 1 a.m. in the morning, and she will go get them. She’s really inspiring.

I was part of a research study through Boston University for CHWs specializing in HIV. We covered a lot of different concepts. There’s a website through HERSA AIDS Foundation that sends you information about HIV studies. It talks about the classes we took, how we worked with supervisors. It shows that it didn’t matter what education you have, you can still participate. I went to Boston six times in three years. People came from organizations all over from the ten highest place of HIV infection in the United States. We talked about different ways that we could help each other. It was really interesting. The results have been published in this report called Participatory Curricula for Community Health Workers and HIV, and the course is online now.

We helped figure out what questions needed to be asked; what needed to be included in the curriculum to make a better CHW.

Working here helps me be a better person. I take better care of myself now. I worked with a secretary who told me, “How are you gonna tell somebody how to do or what to do if you’re not doing it yourself?” I said, “Well, I haven’t even thought about that.” She was right. How do I look telling you that you gotta take your medicine every day if I’m not doing it, or if I’m not eating right and stuff like that? So, it’s been a long battle, but, hey, I’m here.

When I lived in Philadelphia, I got into this program called TEACH. It taught me how to take care of myself, how to talk to my doctor, different opportunistic infections, and stuff like, which are all things that can hurt you. It was just a wealth of information, and it taught you about advocacy. I was learning, and that right there made all the difference in the world.

TEACH helped me learn that this virus lives with me. It doesn’t define me. It doesn’t make me who I am. And for a while, I let it. But once I got rid of that attitude, it was off to the races. I got involved with ACT UP. We advocate for housing, medications. I did die-ins, all kinds of things with them. I stayed with ACT UP for about three or four years.

I’m now a member of the Baltimore Planning Council on the PLWHA Committee. I am a member-at-large for People Living With HIV and AIDS. We’ve been working on making the transitional housing better for people. We’ve been fighting for it for about two years. I kept bringing it up and telling them things have to change. So now, they have counselors that stay there. They have people just to help them with job training. Before you can get your place, you are supposed to go through a class on living, on how to take care of your place, paying your bills, budgeting, and stuff like that. Things that people who are homeless may have forgotten how to do. I really wanna see housing for people and my battle now is getting some ranch-style transitional homes because we have a lot of clients that are in wheelchairs. Also, getting seniors into senior buildings.

There are no programs open, but we’re working on making seniors living with HIV the main issue this year. Because we are living longer; those that they said would be dead are still here. So, there’s an abundance of older people with HIV living now.

I’ve done a lot during the pandemic. We did food giveaways. I was concerned about people eating, people having somewhere to sleep. A lot of my clients are older people with no one to talk to because a lot of them are by themselves. Even though I couldn’t get to some of my clients, I could talk to them on the phone. I have an apartment building for the elderly up the street from me.

During the beginning, I wondered if these people are eating. If anybody is taking them food? Is anybody looking after them? Did anybody give them a call to see if they’re all right? Those kinds of things. Mentally, just knowing that somebody cared enough to call and check on you makes a big difference. Some people don’t have a lot of people that call them. They live on their own and they don’t reach out to people. I missed being able to see people because when I can see you face to face, I can tell if you’re good. Your facial expressions, the way your eyes look and stuff, all that tells a story. You get better insight into what’s going on when you can see people face to face.

During COVID, they said we were more at risk because our immune system was not up to par. Some people have no T-cell counts, so that makes them more susceptible to getting infections and stuff. So, working during COVID was kind of hard because you really wanna go out, you wanna see people, especially those that you already know were struggling. I’d call people, check on them. I don’t drive so the nurses and the social workers that I worked with, we made up care packages and they would drop care packages off. We did food drives. We would all meet and help give out food. Most places would give us boxes that we would take to our clients that needed food. We tried to make sure they had everything that they needed: food, napkins, gloves, a mask, hand sanitizer, soap powder, bleach, and things of that nature.

What makes this job so comfortable for me is because I can relate. You know, that’s all a part of this. When I go in the street, I can relate to not being able to pay that gas and electric bill, not being able to have all the rent. We don’t just stay at this hospital. We go all over the city. For me a CHW is about community. Community is outside. Community is all around you. So, if I’m in the community, that means going out there. I may have to go to your house. I’ll meet you. I’ll meet you wherever you wanna go, wherever you wanna meet. We can meet at McDonald’s. We can meet at the corner store. Wherever, as long as you let me know you’re okay. What is it that you need from me? Is there something I can help you do? That is what a CHW stands for to take those resources

that we find and bring them to the community. It’s just sharing what you know. That’s basically what a CHW does: Share what you know and assist where you can.