Disabled in Prison
My journey through “doing the time for the crime” began in a misinformed courtroom in L.A. You see, my judge called the CDC before sentencing to verify there was a medical facility at CIW (California Institution for Women), close to my family. He wanted to be certain that sentencing me to prison, as the district attorney wanted, would be the appropriate place to provide the medical care I need. He was misinformed - lied to - told a complete falsehood by the CDC. Now, I am not only NOT in a licensed facility able to care for and house me, I am also NOT near my family. I am in central California, over 400 miles from my loved ones and have NOT seen any of them for 18 long months. My parents are in their 80s and cannot drive this far. I am totally disabled with 14 different medical conditions. These conditions counteract each other. It takes 30 different pills and treatments each day to keep me alive. My room temperature is supposed to stay at 70 - 75 24 hours a day. CDC medical cannot provide this care.
The judge sentenced me to turn myself in at CIW, so I would not have to go through county jail treatment. The CDC said I must go through county jail for a week or so. I was there for three months.
After three months of waiting on CDC transportation, my ambulance arrived. Yes, 400 miles to prison via ambulance. I was taken to the CCWF/SNF (Central California Women’s Facility/Skilled Nursing Facility). I was admitted directly into a room there. CCWF is the designated medical care facility for women in California’s prisons. While in the SNF, I was subjected to a lack of medical care by the doctor, and nurses and a massive cover-up of neglect by the medical staff - malpractice at its finest. I repeatedly tried requesting to be examined and tested for symptoms I was experiencing. I was given more and more pain pills. I had never received basic exams such as a pap smear/pelvic exam when I arrived. Even though I was admitted to the medical facility. I submitted request forms, spoke to nurses daily, and tried many times to speak with the one and only doctor assigned to the SNF. I received no tests - no answers - only more pills. Being ignored, I tried one more time to get the doctor’s attention. He came to my room - bursting through the door, ranting and raving and screaming at me - out of control. He waived my request (4th one) in my face, accused me of faking and said he was sending me to the hospital so another doctor could tell me that nothing was wrong. I felt humiliated and embarrassed. So away I went in another ambulance to emergency. After tests, that could have been done at the facility, I was told by the doctor I had a severe kidney-urinary tract infection, an extended gallbladder and gastric reflux. My symptoms pointed to physical problems - once again the SNF doctor was negligent to examine and test me.
I also have sleep apnea which requires that I sleep with a C-Pap machine to keep me breathing during the night. After two months without it, I was sent to the pulmonary doctor - a specialist. After examining me, he called the DMO (Chief Medical Officer) at the facility and told him to get my C-pap immediately, and if it was not guaranteed for me to have it by the end of that week, he was putting me in the hospital so I could use one immediately. Sleep apnea causes you to stop breathing and could result in death, and is a strain on the heart. I had my C-Pap three days later. It seems to take private doctors to move prison doctors to provide necessary care.
The battle to get the SNF doctor to treat my conditions continued. On his monthly rounds, he would see me 2-3 minutes, no pen, no chart. Then he would ask me why I was there, as though he had never seen me before. I wondered if he ever read the medical charts - or - maybe I didn’t even had a chart!
The medical care became worse. The nurse wouldn’t answer call lights at night. They would ignore the call or turn off the light. Sometimes, however, if you were very fortunate, you would have the nurse answer you 2-4 hours later. Many nights my arthritis would wake me up with pain shooting through my joints when I would move. I usually would lie wake - waiting for a nurse to answer - usually until the morning shift of nurses would come on.
One night, the nurse came in with my night medications. I looked at the pills in the cup and told him they were not my meds. He took them back, checked the other cups on the tray. “Oh, I always get you mixed up with Ms. _____.” The woman in the room next to mine was paralyzed and had seizures - those were her medications.
Sometimes I couldn’t move fast enough to get out of bed for the bathroom and would have “accidents.” My bedding would become soiled. The night shift wouldn’t help so I would have to wait for the day shift. One day I had asked the nursing assistant twice to change my bed. Finally, I went to the nurse after lunch and told her about my bed needing to be changed. My requested was answered by “changing your bed is a comfort - not a necessity.” I cannot change my own bed due to my arthritis.
I had lived in these conditions for so long, so when the medical staff continued their lack of proper care and conditions became worse - I filed 602s (appeals) on medical or lack of medical, I should say. I never received answers when I first began filing them. Then a porter (janitor) who cleaned the SNF, discovered 602s in the head nurse’s trashcan. After that I “sent” my 602s out from the SNF with the porters so they could put them in their unit mail. I began to get replies on my 602s - and a lot of attention from the head nurse. One day she came into my room and told me to stop causing trouble for her staff.
I needed someone to listen - someone I could trust, who would assist me and help me live through this “time.” I became involved with lawyers and advocates who fight so courageously for prison/medical reform. Someone had to speak the truth about the lack of proper medical treatment and care. I looked around and saw - me. I never gave up trying to get proper medical treatment and necessary tests - only this time with legal assistance. Without these voices outside these walls, our voice within would be but a whisper.
Eventually, as the truth began to expose the medical conditions, I was threatened with a transfer from CCWF/SNF to VSPW/OHU (Valley State Prison for Women/Outpatient Housing Unit) if I didn’t stop filing 602s, helping others with 602s and quit meeting with the attorneys and advocates. I could not - would not give up my rights as a human being to survive with my disabilities inside prison walls.
So now, here I am, at VSPW/OHU lying in solitude - similar to administrative segregated housing. I spend 20-22 hours a day in my single room. This facility has no license to house any disabled prisoner long term. There are no operational procedures or policies, so staff is able to do what they want with you.
The only bright side of the scales is I do have a good professional physician who still cares about human life. He did a complete history and examination on me. After a year of fighting for these tests in a licensed medical facility, I received the tests here. The pills the SNF doctor were giving me for pain were a respiratory suppressant. They caused my lungs and heart to work overtime. I have COPD (Chronic Obstructive Pulmonary Disease), Sleep Apnea, Chronic Asthma/Bronchitis. I am prone to pneumonia and should never have been on those pills. Upon more tests, they revealed more medical issues; ovarian cyst, hepatitis C, para-thyroid tumor. The physician is thorough here, the nurses - well the lack continues in that area. Still, at night, call lights are not answered - no one checks on you during the night. Sometimes I ponder this dilemma - maybe we just aren’t allowed nursing care between midnight and 6 a.m. I wonder.
The nursing supervisor here at VSPW/OHU has admitted this place is not staffed or set up for long term care. Once again, I have had to file 602s just so they will comply with the Americans for Disability Act. The staff says I am paving the way - they never had a permanent resident in the OHU. No one quite knows what to do with me. One nurse said its all by trial and error.
Why must I suffer the “trial and error” that puts stress on my body every day? Why must I be subjected to discrimination? Because of my need for special housing I endure. Is it CDC policy that one institution has the proper medical facility while the other has the proper medical treatment? After all the years the CDC has been in “business”, you would think they could put good medical doctors and nurses at the same facility where the proper housing for disabled is located.
I feel like I’m living in a circle. The staff and I seem to go round and round because of no policies or procedures, they have no answers for me.
I am exhausted. I have heard the cries and screams of so many neglected and dying women. I have seen my friends’ names being written on the memorial plaque as they died - one by one. Did they reach the point of exhausted - the point of becoming too tired to fight on anymore? Did giving up their last breath become their way of being released from the CDC medical facility care? I wonder - about them - about me.
But then I answer myself - I won’t give up the fight for my life - for others - for justice. Do the crime - do the time. Does that mean time unto death? No one with severe disabilities should be sent to prison. Prisons are not built or equipped for long-term medical care. Prisons are for safety? What threat does a disabled person pose? There must be alternative housing and care - so I continue to find the solution, the answer to live.
Custody and medical departments never seem to be able to agree on the care and housing of the disabled inmate. Medical care sometimes goes against custody procedures. Custody procedures don’t agree with medical needs. We - the disabled are stuck in the middle - between them - fallen in the crack.
Maybe - just maybe - someone out there will listen to my voice. Will hear and recognize the truth about the injustice of disabled persons being sent to prison. Maybe, I still hope and pray - my time, my experience here can be of some good - to open the eyes of blind justice and balance the scales.
We the disabled serve a double sentence. Is this right - is it justice? The weakest endure the most.
Come see through my eyes, live through my body. Come sit in my wheelchair or life in my bed. Try calling for a nurse who never comes, lie in a bed not changed for two weeks. Smell your trash built up for over a week because no one cleans your room. Try to get something from a locker you can’t reach, unable to hold onto anything because your hands won’t move right - no help from anyone - you are all alone. Only the silence of your room to answer you.
Reach into your heart - then look me in the eye and tell me this time fits my crime. Is this justice or big business? When you find the truth - let me know. I will be here - praying to live until I parole.