45, currently imprisoned
Irma spoke with us while still in prison. A woman who looks much younger than her age, Irma had her dark brown hair pulled back in a braid, and she wore a prison-issue white baseball jersey and blue denim pants. The prison garb did not hide all of Irma’s tattoos, which mark significant experiences in her life: her past loves, her gang affiliation, the daughter she had at fifteen. Irma has spent much of her life in and out of prison, mostly on drug-related offenses. During that time, she went through several rounds of rehab for her drug abuse, and has now been clean for over three years. In 1990, while in prison, Irma was misdiagnosed with HIV, and for the next seventeen years was treated with extremely toxic drugs that were contraindicated for her other illnesses. She spoke to us of the discrimination she experienced as an HIV patient, the effects of the HIV medication on her health, and the prison’s refusal to accept responsibility for her misdiagnosis.
USING DRUGS SEEMED NORMAL TO ME
One of the first things I remember was when I was five years old. This big blue car pulled up to the trailer where I lived with my mom in LA, and a lady with a big old hat came and put me in the car. She was from Child Protective Services, and she took me away with her. Later I found out that someone had called Child Protective Services because of my stepfather, Luis. He never molested me, never touched me. But he was a heroin addict. I remember smelling burnt matches all the time as a kid. I still hate that smell.
That day, Luis had gone out to cop some dope and left me alone in the trailer with the outside of the trailer door tied shut. A lady in another trailer saw that and called the police. Luis was just getting home when the police arrived, and I’ll never forget that feeling. I was so scared that they were going to arrest him, and that they were going to take me away. And of course they did. Child Protective Services took me to court, and the judge didn’t let any of my immediate family members have me. I remember screaming, but it didn’t matter. I went back and forth between my grandparents and my godparents for a while, but finally the court agreed to let me live permanently with my grandparents.
My mom would try to get me back, but she was an active heroin addict—Luis had turned her on to the drug—and the court wouldn’t give her custody. She tried hard, even getting herself on a methadone program. And she was doing good, she always kept jobs. I remember her going in for her methadone treatments. They’d give her a lockbox for her take-home medication, and it looked just like a lunch box to me; I remember I wanted one like that for school. But all her efforts made no difference to the court, and they wouldn’t give me back to her. In the end, my mom got hooked on pharmaceutical meds—Valium, codeine, anything that was a downer.1
My grandparents tried their best with me. My grandma was a cafeteria dietician and my grandfather was a janitor. He did floors, she cooked, and they supported me to the best of their abilities. But even so, I didn’t have too much of an affectionate childhood. I wasn’t hugged a lot, I wasn’t nurtured I think the way I should have been. My family just didn’t know how to do that.
My grandmother tried to teach me that to be the best person you can be in society, you just have to do what’s right. But my grandfather had no education; he just rolled with the punches, ditching and dodging. So I had two different kinds of nurturing, good and bad. In my case it just happened that the bad nurturing outweighed the good nurturing. Soon enough, I started learning how to manipulate. If I didn’t get what I wanted, I knew that all I had to do was scream, and I got it.
In second grade I started having visitations with my mom on the weekend. At the beginning I never really wanted to go with her. I didn’t trust her. But in sixth grade, when I started developing, things began happening. I started wanting to smoke, I wanted to pluck my eyebrows, I wanted to do all sorts of stuff my grandparents wouldn’t allow. And at my mom’s house I could do anything I wanted because she was hardly there. I’d have boys over, I could leave and not come back until the next day, and she wouldn’t question it. She’d yell, but all it took was a pill and a glass of Kool-Aid to keep her quiet.
In seventh grade I ran away for four days. My grandparents finally gave up on me. They couldn’t control me any more, so they gave me to my mom for good. By that time, the courts were already out of our lives, and the only person we had to worry about was the welfare social worker. That was nothing; we just had to go in, dress nice, and show that I was in school. That was it, and we got our checks.
Once I was back with my mother, it all started: the cigarettes, the drinking, the hanging out with gangs and going out with boys. I even became a prostitute, and I started using drugs. With my mother already living the life of an addict, it seemed normal to me. My mother did it and my stepfather did it and everyone else out here was doing it. I’d walk outside my mom’s apartment and there were gang members drinking and smoking and whatever.
IT’S LIKE THE CYCLE WAS NEVER BROKEN
I was locked up at the age of twelve for truancy, being a runaway and a delinquent, and for using PCP. My grandparents were devastated. They just couldn’t understand how it had gone wrong. But they were loyal, and when I was in juvenile hall my grandmother would not miss a visit. That lady was the first one there and the last one to leave. I remember the counselors there would give her lists of things I was allowed to have, half of which I didn’t even need, and she would bring every single thing on the list. My grandma even started bringing things for the other girls, too. It was like she was the grandma of the whole unit. All the girls knew that when she was coming, everybody was getting something.
I was in for three months, and then they let me out. But I was only out for a couple months and then it began all over again. It was like a cycle. I would be out for a little while, and the probation would come and pick me up again, out of nowhere.
I wrecked my teenage life. To me, life was hanging out and going to parties and going to the drive-in with the guys.
Once, when I was fifteen, I was sent to a juvenile probation camp instead of juvenile hall. When they began letting me go out on passes to go home for the weekend, I just left. That’s when I got pregnant. By then I was drinking alcohol and smoking PCP on a daily basis. When my baby daughter was born she was taken into custody and I was sent back to juvenile hall. My grandparents were too old to take care of the baby. By that time, though, my mom had gotten off the methadone and was able to get custody of her.
I was so glad my little daughter didn’t end up in foster care. I hear a lot of stories about sexual abuse here in prison. I’ve seen women crying on the phone because they’ve just heard that somebody had touched their little girl in the wrong areas; I don’t think I could endure hearing that about my baby. And it breaks my heart to hear these girls talking about having sex with their fathers, of being abused. I might have had a harsh childhood, but not like the stories that I’ve heard from the women in here. There are some really hurt individuals in here, and I’m not talking just mentally, but physically—scarred and damaged so they can’t have kids. So it makes me so grateful that my mom was able to rebound and care for my daughter. At least she avoided being abused in foster care. But of course, in the end, she had a baby at fifteen too. It’s like the cycle was never broken. My mom wasn’t married and had me young. I wasn’t married, and I had my daughter young. I only hope my granddaughter will be able to break the cycle.
YOU CAN GET ACCUSTOMED TO THE LOSS OF DIGNITY
The first time I was sent to prison, I was eighteen. I was convicted of possession, transportation, and sale of PCP.2 I had large quantities, apple juice bottles of that stuff. My first trip to prison was for six years, and I’ve pretty much been in and out since then. Now I’m in my mid-forties. In the first institution I was taken under the wing of lifers who knew I was a baby and couldn’t take care of myself. A lot of them played mom and a lot of them played sister, and they taught me the morals and principles of how to carry yourself, and the dos and the don’ts of surviving in prison. I learned that you have to carry yourself right, carry yourself with respect.
It’s hard to explain how degrading prison is to someone who’s never experienced it. You are told when to wake up, when you can bathe, when you can brush your teeth. You stand for twenty minutes waiting for a door to open just so you can walk in a line and go eat. You’re given three minutes to shovel down your food and then you’re right back in that line, waiting for the door to open up again so you can go put your stuff away. Through all this you have constant yelling over an intercom.
There’s a lot of heartache, a lot of crime, and a lot of violence and chaos. Crammed into a building with 200 women you’ve got 200 different kinds of cultural backgrounds, ethics, beliefs, attitudes, and emotions. You’ve got 200 different ways of processing emotions. There are some women who can’t read, some who weren’t even taught how to shower. They come in here and they are stripped of their dignity. They can’t even go to the bathroom without male staff watching. You can get so accustomed to the loss of dignity that your standards just disappear.
But some women come in who have never even taken off their clothes in front of their own husbands. They get so upset and so embarrassed, they cry. What makes me the saddest is that I find myself hardening up, saying things to them like, “What are you crying about?” I have to remind myself to have compassion. Just because I’m used to it doesn’t mean someone else is. It’s so sad to see women coming here who really don’t know how to deal with prison. They’ve never been out of their homes. They’re in here for ridiculous stuff: making bad decisions, helping someone out. They were just so naïve and gullible that another person was able to reel them in. And they’re incarcerated with people who’ve committed murder. It’s like one pit. Everyone’s thrown in one pit.
YOU’RE CONSTANTLY LIVING ON THE EDGE
It’s two o’clock in the morning, how did this door get open? Even now, when things are supposed to be better, COs routinely come into our rooms and take our things. A lot of us have arts and crafts supplies to make cards with, like cardstock and markers. We might also have books or other small things. Routinely the COs will come with their gloves and bags, and they take everything. You’ve got three blankets? Trust me, they will take them away. You have a homemade pillow sewn up, they’ll take that. You’re constantly living on edge. Sometimes I feel like they set some women up. They know who’s going to blow her stack about having her things taken, and they purposely target her, just so that she will lose it and they can bust her.
I WENT IN FOR ANGEL DUST BUT I CAME OUT USING HEROIN
There is an abundance of drugs in prison, more than on the streets. It’s the currency of the place. You buy it, get it for free, do whatever. You become a runner, do a favor for an inmate, she’ll give you half of the drugs. Even your tray of food—hamburger night, pork chop night—you take the pork chop back, you get dope in return. I went in for angel dust, but I came out actively using heroin. I had tried heroin in the free world, but I wasn’t an active heroin addict because of my mother. I knew I didn’t want to follow her example, so instead I’d used PCP. But when I got to prison I started using heroin, and by the time I got out I was hooked.
After that I was just in and out of jail and prison. Out for sixty days, back in again. In for four years, out again, violate parole, back in again. It was the same thing over and over again, for years. The only thing that changed was that in the early 1990’s I switched from heroin to crack cocaine. Every time I went into prison, I came out with a worse addiction. Crack cocaine is just overpowering, I can’t even express what it’s like. I’m clean and sober now, and I look back and say to myself, “God! What the hell was I thinking?” I look at my arms, at the scars and tattoos, and I see how girls without them can wear pretty shirts and stuff, and it just makes me so sad. I just had no sense of worth. It just didn’t matter.
It took me a long time to get clean. I’ve been in and out of programs. I’ve worked with sponsors, I’ve gotten therapy, I’ve done outpatient, I’ve had intensive family therapy counseling. It seems that when I did the intensive family therapy, that’s what caused me to reuse drugs even more. A lot of the help I got was court ordered; it was nothing that I ever chose to get. I wasn’t ready for it, and I was scared. Fear turns into anger and anger turns into resentment and resentment causes you to use, because if you don’t know how to deal with the resentment in a healthy way, you have to numb it. So I’d use more. It was only when I was really ready to face all that stuff, when I came to it on my own, that I got clean.
The first time I got clean was for nine months. It was in 2004, and I had just been paroled. Rehab worked that time because I was ready, and because I had extensive care and a structured program. Through the program, I got a maintenance job, and so I went from rehab straight into work. They helped me get financial aid, I picked a college, got into it. They helped me all the way through. But I relapsed and ended up back in prison. I went back in in 2006, and I’m due to be released very soon. This last time I went in, I got clean again, and I’ve stayed clean for two and a half years.
But I used for a long time, and my body is a mess. I bruise easily; I just tap myself and I end up with a raised, painful lump. I’ve wrecked my body so much that even just having a menstrual period, I’m doubled over in pain. I haven’t been able to get pregnant since I had my daughter. My periods are so bad that the prison doctors are monitoring them now. But that doesn’t mean anything. They’re not trying to fix the problem, or even diagnose it.
IN PRISON, YOU HAVE NO INFORMATION. YOU DON’T KNOW THE TRUTH
In the middle of 1990 I was diagnosed with HIV. While I was in jail, I was seen by officers from the public health department, interviewed and counseled, and given a blood test. It came back positive, and I have to say I wasn’t surprised. With my history of drug use and the prostitution, it made sense. But you can imagine this diagnosis was devastating to me. I even tried to commit suicide.
I was sent to the prison’s Chronic Care Program (CCP), where they kept people with chronic illnesses. In the CCP I had restrictions galore. I couldn’t go to any other prison, I wasn’t eligible for transfer to less restrictive institutions, and I was medicated. For almost ten years I was on three combinations of HIV therapy. They’d test my white blood cell count and it would come back really low. They’d screen my blood for my viral load, and the results would be terrible.
The side effects of the medication were awful: vomiting, diarrhea. Every day I had to stand in the med line, sometimes for hours in the heat. I was also regularly sent for chest X-rays with the other HIV women. And of course, because of the open treatment and the marked bags of medication, everyone knew I was HIV positive. People would harass me, the COs would discriminate against me. The whole system discriminated against HIV patients. For example, in 1999, I wanted to transfer to Valley State Prison for Women. They had just opened a dry cleaning vocational training program, and I was a perfect candidate for it. The prison agreed that I fit all the criteria and should be sent to the program. Then they decided they weren’t going to house HIV inmates at VSPW; they were going to keep them in one place so they could be treated together.
Then, in 2007, after more than a decade and a half of aggressive treatment, the prison finally decide to retest me. The test came back negative. Negative! It turned out that I was not HIV positive, that I never had been. This negative result was confirmed in 2008. The first HIV test they did back in 1990 was wrong.
I’ll never know what happened to the original lab reports, whether they were falsified or whether it was just due to incompetence. They’ve retested me a few times, as recently as last year, and I’m still testing negative. But at the same time, I worry that maybe I have a special strain of HIV that’s just not showing now. Am I gonna pop up with full blown AIDS a few years from now? I can’t stop thinking, How could I have had so many lab tests that showed high viral loads in my blood? I’m scared. As it is there are so many diseases, like with the hepatitis they’ve got the whole alphabet now. How do they know that I don’t have a silent strain of HIV that’s just hiding? I have no access in prison to medical information beyond what they tell me. That’s what it’s like to have a disease in prison. You have no information, you don’t know the truth. In fact, I don’t even know if I can trust this last test. Am I really negative? I don’t know what to believe right now. I don’t know what to do. I wish I could go see a doctor out in the free world who could screen my blood and see once and for all if I’m really HIV negative.
After all this happened, I petitioned for a hearing with the Chief Medical Officer. Before prisoners can bring a law suit against the Department of Corrections, they first have to file an in-house grievance. It took me exactly nine months from the time I filed the grievance for the Chief Medical Officer to hear it and interview me. When I walked into the hearing room, there was a whole panel of people— medical officers, public health officials, nurses. They were ready for me. The public health nurse who initially sent me to be tested claimed that she’d never interviewed me. But how else would I have been referred for treatment? She insisted that she had no record of that, that she didn’t recall it. It was ridiculous. We all knew that I’d been treated for HIV, but she kept insisting that she’d never given me the diagnosis.
The people on the panel claimed that it wasn’t their fault, that they simply treated me for a disease they were told I had. They refused to acknowledge that they were the ones who told me that I had the disease.
IT’S LIKE YOU’VE BEEN PUT IN A LITTLE BOX
Out in the world, when you get a diagnosis of a serious disease like this, you would go get a second opinion, just to be sure. But in prison, that isn’t an option, so you have to rely on their diagnosis. You have to trust them. That’s what I did, and look what happened. My advice, even to people in the free world, is to be your own best advocate. Do your research, get on the computer if you have access to one. Try to find out as much as you can, and make sure you get a second opinion.
My liver has gone through the stress of processing HIV medications, which can cause damage. But I don’t even know if there has been any damage, because they won’t test me. So I’m trying to monitor my own body to see what the effects of the drugs have been. I’ve had a series of problems which may be related to the HIV treatment, and may be related to my many years of drug abuse. For example, I’ve had my gall bladder out. I also have neuropathy in my legs, which causes terrible pain. I don’t know the cause, but many other HIV-positive patients I know experience the same kind of pins and needles in the bottom of your foot where you can’t even step on your foot. I wake up at night sometimes because my whole leg feels like it’s going to crack off.
It took nine months for the decision from the hearing to come through, during which time they kept sending my forms back to me, telling me the wording was incorrect or the filing dates were incorrect. Because I had to go through this process before even considering a lawsuit, I resubmitted three times, but each time they’d send it back, claiming there were clerical errors. But during the process I had a public interest attorney from the prisoners’ rights group Justice Now with me, so I was sure that the forms had been in perfect order.
In the end, the prison refused to accept responsibility. They blamed the mistaken diagnosis on the lab, and told me to go ahead and take it up with them. I tried to do that, but the lab was closed down by then. It turns out it had been shut down by the government because it was falsifying tests.
I also have, for years, been testing positive for tuberculosis. Each time they say it’s a false positive. When I had the HIV diagnosis they would say that a false positive was a side effect of the disease. But now, I don’t know why I keep testing positive.
I also have these ongoing gynecological problems that won’t clear up on their own. I keep testing positive for vaginal bacterial infections. I’ve had Pap smears that showed abnormal cells, which they diagnosed as a bacterial or fungal infection. They’ve given me a variety of medications for these vaginal problems, including medications for herpes, despite the fact that I did not test positive for the disease.
Even when I catch a simple cold, I can’t shake it off like my roommate does in three, four days. I carry it for about ten days.
I’ve also tested positive for hepatitis C, and for many years was considered a dual-diagnosis patient. Since the HIV diagnosis has been disproved, sometimes I wonder whether the hep C diagnosis is accurate. But according to the prison, I’m positive. They won’t treat me, however, because interferon3 is not available for women like me, who have less than a year left on their terms.
More than anything I’ve gone through in my life and in prison, this medical stuff has messed me up. If you live in the free world, I don’t think you can really understand. When you’re in prison, it’s like you’ve been put in this little box, and little slips of paper are put in the box with you, with pieces of information. You can’t verify it, you don’t know if it’s true, you don’t know what to do or how to act. And worst of all, there’s no way of you getting out of this box. You just have to keep breathing.
1 Valium and codeine are both prescription medications that can be used, and are often abused, to affect mood and relieve pain. Because of their sedative affect, they are also referred to as “downers.”
2 Phencyclidine, a synthetic drug also known as angel dust. Users experience distorted perceptions of sight and sound, and symptoms resembling those of schizophrenia, including hallucinations and extreme anxiety.
3 An antiviral medication used to treat hepatitis C.