[Below is Kimberly Glanz’s letter to the disability court she faced in March 2019]
I am here before you today for the first time, but not the first time in this setting. This is my third hearing on this claim, that is now currently seven years old, and my sixth overall application in 16 years. I have been fighting my disease and you, the courts, for over fifteen years and I have to tell you, I am really tired. I am absolutely worn out and worn down. However, I may be worn down, but I am not going to give up. If I have to, I will be before you again, and then again, and if I have to again. I will keep coming before you until you see me and more importantly, you hear me. I have also left instructions with my children, that if I am no longer able to fight myself, they will stand up and do it for me. We are united in this fight, and we are committed to it, and will not back out. That being said, I will be mindful of the fact that this is the first time I am in front of you personally. I will also tell you that it is really difficult to remember this far back as far as the minute details. There are reams of papers, and the history of my case all over the place. I have done my best to chase them down and present them to you in a cohesive fashion.
I was diagnosed with HIV in October 2004. I was undiagnosed for a year and a half before then. I lost my job with Allstate Insurance in the same year. The man who I got HIV from was pretty much at the end of the line at this time, but still managed to last until September 2007. I was his caregiver until the last day of his life in the middle of my living room floor. Even though I was extremely angry with him for lying to me and then passing me the virus, I still forgave him and cared for him until he passed away. He had no one to do it for him, so I did, at a great cost to myself. It is not easy to care for someone who is dying, and someone dying of AIDS is even harder. It isn’t quick, and it isn’t pretty like in the movies. It is hard and it is ugly and painful.
From the beginning, Bobby didn’t want me to tell any of my family or friends, including my kids. I violently opposed that, I have always been open with my kids and my family and I don’t keep stuff from them. We fought about it for about six months before I finally told my kids. They were very angry with me for keeping it from them even the short time I did. They were still fairly young at the time and it was very hard on them, they were afraid I was going to die and that they would be alone. My parents were angry at him for exposing me, and angry at me for even having him in my life. My son was 14 and my daughter was 10 at the time of my diagnosis. My friends were angry, my parents were angry, my children were more than angry. But none of it mattered in the end, their anger didn’t change the facts…..Bobby died.
While I was taking care of him up at his parents’ house, in late 2004, before I moved into my new place, I filed my first application for disability benefits. The first time, I applied for SSD, not SSI. I had enough credits to qualify to apply for SSD at the time from my prior work history. I had my phone interview and things were moving along. By the time I was given my first hearing, I had moved into my place and Bobby had come to stay with us. I didn’t have an attorney for the first one, I didn’t think I would need one. I have studied law since I was in high school, for personal reasons and it the profession I was going to pursue in college. I went to paralegal college and got my certification in many areas, but not my final one. I had to drop out when my daughter was born, and I wasn’t able to complete the last five months of study I needed. I still use all the skills I have acquired from my studies. I was confident in my abilities and my knowledge. Not a bit of it helped me, I was denied, and no one advised me on how to proceed. The research I was doing on this subject didn’t help matters either. All language and meaning given in any policies on this topic is very difficult to decipher and understand. Even with my extensive knowledge, I was mired down in red tape and misguidance. The normal person doesn’t stand a chance. I had no one to advise me about appeals or that if you started a new claim, you lost all the time and ground you had on your claim. The second time I applied, I got an attorney and still qualified for SSD and not SSI benefits. I settled in for the wait time for my hearing, confident that I was going to get my benefits. While I was waiting for my hearing, Bobby passed away.
After Bobby passed, the only one is his family that ever gave me any time or love or understanding, his mother, was diagnosed with lung cancer. I took care of her, helped her with treatments, the house and yard, and grieved the loss of her son with her, until she lost her fight, a little over a year later and she joined him. The family then decided they were done with me, that I wasn’t useful anymore, and cut off ties with me and my children. To this day, I don’t speak with them. I was left to pick up the pieces.
My relationship with my father was never the same. We were extremely close, and I was an only child, so I had his full attention and love as his daughter. When he found out about this, he couldn’t look at me the same and I felt the change in us. I wasn’t able to repair the relationship to be what it used to be, a few months after Bobby’s mother died, my father passed away suddenly in August of 2007. He went into the hospital thinking he had a case of food poisoning and ended up dying on the operating table from an aneurysm that went from his abdomen to his heart and he bled out.
Somehow, I made it through his funeral and started to handle his estate. I was the sole beneficiary as I was his only child, I thought I would be protected for some time while my case was going through and I was waiting for my hearing. Little did I know what a mess I had on my hands. Since no one ever thinks they are going to die, he wasn’t prepared in any kind of way. I ended up losing his condo to the bank in foreclosure, I couldn’t afford the house payment and condo fee payment while it was on the real estate market to be sold. Right at the time I put the condo on the market, the real estate market collapsed, and nothing was being sold. I got an offer for what price I was asking, it was enough to pay off the mortgage and fees and clear a ten-thousand-dollar profit. The bank refused the offer and I had to relinquish the house and lost my profit. He had a 401k through his job that had $86,000 in it, it was given to my mother as she was the beneficiary on the forms he filled out. I got a $5000-dollar life insurance policy that was in my name that I had to use to pay for his funeral. I was left with his furniture and his checking account that had about $15,000 dollars in it. I still had to close all his accounts and give back his leased car, so it didn’t leave me much to work with. I still wanted to relocate out of the town wewere in. We were being harassed almost daily by the local police department and by the residents hounding me about how Bobby passed away. The kids and I decided to relocate to another town, so I was able to secure a place and pay the first, last and security and pay for the moving company and get a secondhand car. We got settled in and I figured I had enough left over in my account to pay our rent for about nine months, and by that time, I would have my hearing and my benefits would kick in and we would be as ok as we could be.
When I was able to get to my next hearing with my council, I was confident that things would go my direction. Little did I know that my attorney had some sort of problem with AIDS patients.
The entire hearing, she was sitting on the far edge of her chair, as far away from me as she could get. She had this look of fear in her eyes that I had never encountered before. This was the first time I saw actual prejudice in practice with this disease and it distressed me to the point of hysteria. The moment the hearing was over, I fired her as my council. I got no referral from her for another one. I don’t know if she said anything to other attorneys around our area, for years afterwards I couldn’t even find an attorney who would take my case. Each time I would have a hearing, the vocational expert that testifies for the state said I was still able to work.
When I would get my hearing decisions, the judge always said he based his decision on what the VOE stated in his depositions, regardless of what the doctors said or what my health was dictating. I was running out of money and options when someone advised me about the housing program, Section 8. They had a three-year waiting list to get approval in my area, but I had an advocate from the AIDS Coalition speak to them on my behalf to put me at the top of the list. While I am fighting to get in this program and save my house, I ended up three months behind in my rent payments and was facing another eviction. I had to beg my mother in the parking lot of the courthouse to write me a check to give to my landlord to stop the eviction, which she very grudgingly did, and I was saved from the streets one more time. My housing voucher kicked in, and I was at least able to keep up with the rent. I would go without electricity for months, sometimes because I couldn’t keep up with the bill. In the summer, we went without gas service for our heat, but had no hot water and had to boil it on the stove and shower in cold water. We didn’t have a water or sewer bill where we were living then as it was in the country, but our landlord didn’t provide salt for our water softener, so we had to drink rusty water. I had to junk my car as it developed a water hose problem and water would back up into the interior of the car and it started to grow mold, which became extremely hazardous to me. I was trying to find any kind of job that I could do working out of my house so I wouldn’t be around a bunch of people in an office, there was, at the time, very little of this kind of work out there that was for a legitimate company. During this timeframe, I went through two more hearings that resulted in no benefits. I had to represent myself in each one of them as every attorney refused my case. My T-cell numbers were sinking more and more to the single digits and I was getting sick all the time with stuff that I couldn’t shake off. The Social Security Administration also told me that I was longer qualified for SSD benefits as I had passed the time to qualify for them. I then had to start claims under SSI and start from scratch.
Since my diagnosis, I have lost 3 homes to eviction, and even had to live in my car for 9 months while my kids were living in separate houses of friends so they could go to school. Until 2004, I haven’t needed any type of assistance from the state or the county since my son was born in 1990, and my daughter in 1994, when I had to quit working to have them. I was without any type of help from 1996-2004. I have worked since I was 16 years old in 1987. I owned 2 home-based businesses that were successful and gave me the ability to raise my kids. I got a job in a Fortune 500 company at the age of 30, with no college degree and 2 kids. I am a smart, strong, professional woman, a single mother who was successful at her job. I worked every type of crappy job there was in telemarketing and retail so I could give my kids the basics, and still give them all my time. It was tough, we went without a lot of the time, I had no help from anyone, and I did it, I gave my kids a chance at a life.
My son went off the rails when he found out my diagnosis and flunked his sophomore year, had to repeat it, and was able to pull himself back out when we were able to move away from the horrors of where we were. He ended up graduating in 2009 with a 3.9 GPA and was well on his way. He wanted to go to college, and did go for 3 semesters at Akron University, but had to quit so he could work full time to support me. My daughter also had trouble in school but was able to get a handle on it and also graduated high school in 2012. They both entered college together and had to also quit together. They cannot go to school and work full time and keep the household going, they decided to forgo college for now. But since they have decided to quit, they both now have outstanding student loans that they are struggling to defer or to set up payments for.
I spent the summer getting them ready to enter Akron University to start the fall semester. They started their fall semester and then I was offered a job that was out of my house. I took the position and had to go to their offices in Akron for a week of training. I had been out of the workforce for about eight years at this time, and I was very scared of being in the office with all these people when I knew that my numbers were in the single digits. I was susceptible to catching anything these people had, and I knew that a major illness at that time would be my undoing. I made it through the training week and started my position out of the house, a week into my job, I ended up with shingles again, this time on my left side. I was out of work for two weeks and then put on a modified schedule of four hours maximum per day. It was torturous sitting in my office chair with patches of shingles all down my back and across my entire left side. I was in extreme pain and it lasted for five months. At the time that I started this job, I was on a med regiment that was no longer working, and at that time in 2012, there were no more meds out there for me, I had gone through the whole list and was resistant to all of them. The doctors and my kids and my family all thought this was the end for me. I have to admit now that I thought I was also. I was ready for it and if it happened, I was ready to go out. I then got a call from my doctors telling me that there was a new drug out there and they wanted to put me on it. At the time it didn’t even have a name. It took me three months to get it and get Medicaid to approve it as it was not on the formulary for them yet. I finally started the regimen of Stribild and Reyataz in December of 2012. At the beginning, I was extremely ill from the side effects of the pills and trying to cope with them while at the same time, dealing with the remainder of my shingles bout. I was throwing up between the calls I was making, I was having difficulty meeting my quotas, and I was having vision problems from side effects of the meds and couldn’t focus on my computer screen. I started to have to take a lot of time off from my schedule because I couldn’t get through my shifts. I was let go in April of 2013 because of my poor health. It was one of the most humiliating experiences of my life, getting fired from working out of my own bedroom. It doesn’t do a whole lot for your self-esteem, and forget about having any faith in your own abilities anymore, it was just terrible. Over the course of the years since my diagnosis, I have had to accept a lot of things, I have had to forgive a lot of things, and I have had everything I ever cared about stripped away from me that was important. I have had my pride, my independence, my health, my ability, my dignity, my time, my professional life and my future slowly slipping away from me with no way to regain any of them back. What I don’t accept is the fact that I have to sit here and defend myself to you and to this state in that I am sick enough to be called disabled. I am dying slowly every single day that I am still here on this earth. It isn’t sudden and it isn’t quick. It is slow and degrading. AIDS is a progressive disease and no matter what kind of medications they have out there for us, one day there is an end. This is still a terminal disease, that fact has never changed since the day this was introduced to us in society. Because you use the buzzwords like:
- Manageable condition
- Long term survivor
- HIV positive not AIDS, even when you have AIDS
- Near-normal life
- Slow progression
- Chronic condition
People think, somehow it makes it easier to deal with in society, and that because we can live longer, it is no longer what it is, and it doesn’t still do what it does. People are no longer afraid of the disease, they think that if you use softer language, it softens what it does to you, it does not. What I am learning is, it just gives the opportunity for other diseases and problems to crop up.
In November 2012, I filed my current application for disability, my sixth one overall. At the time of my application, my CD4 count was at five. It took almost two years before I got a hearing on this application. For the first time in all my other go arounds with the courts, the vocational expert that testified for the state said that I am not able to work. I was also able to find an attorney who would take my claim. Even after all the other failures and problems I have had with my previous claims, I really felt like I was finally going to get my benefits. Not only did I have my doctors all on board, I had my extremely low numbers and the VOE on my side. Imagine my surprise when I got denied again. This time, the judge said that the VOE’s testimony didn’t hold any merit in his decision. But, how can that be when all the other previous claims were denied because of the same party’s testimony that said I was able to work? This doesn’t make any sense to me, nor did it to my attorney. We filed an appeal, which sat in the courts for another year. On New Year’s Eve, I got my denial on my appeal. I then retained another attorney and appealed to the federal level. That one sat for another year, where the decision was vacated and sent back down to the courts for another hearing. I had that hearing in March of 2018. Again at this hearing, I had the VOE testify that I am not able to work. Not only do I still have the original claims of HIV/AIDS and depression from 2012, since then I have acquired Graves disease, which is an autoimmune disease, and had radiation treatment to remove my thyroid, neuropathy, not only from the two bouts of shingles I had, but also from progression of the disease. I have also acquired problems with my kidneys, because of the years I was on Stribild and progression of the disease, I now have renal failure and atrophy and have major incontinence issues. The end result is failure and dialysis, they say now that I have full function on my right side but only 60 percent function on my left. It is a slow progression, but still troublesome. I also suffer from anxiety and depression, which at this time is being managed by a new medication that was just given in January 2019, and I have been in counseling since the date of my last hearing.
After my hearing at the beginning of the year was over, I couldn’t believe it, they denied me again. Stated again, that the VOE testimony doesn’t hold any merit with the judge. He can deny it and he is going to do just that. So, once again, I am in the federal courts on my second federal appeal on a seven-year-old claim that is a legitimate claim. And again, they tell me I have another year to wait for a decision. That was the end of 2018. Another successful federal appeal, my second, which is unprecedented in and of itself. Now here I am, in front of you, with all the same information, same problems, and new ones to add to the ever-growing list, and I have everyone around me telling me it is just how it goes. I have every detail, every stat, every paper, every piece and scrap of information to show you that I have a legitimate claim. I am prepared to give those to you now.
I have learned one very valuable lesson in the last sixteen years: AIDS isn’t discriminatory, it doesn’t attack just this person or that person, because of how they live or who they love, it can get anyone at any time. We, as a collective, take a lot of things for granted, one thing we all do is take our immune system for granted. We don’t think about what we come in contact with, or who, or how. In the beginning of this disease, the collective was afraid of what AIDS patients would do them. Never once in those conversations did anyone ever take into consideration what the collective does to the AIDS patient.
Here are some examples of what I mean:
- I have to keep all my hairbrushes separate from others, if someone else uses mine, I will get lesions in my scalp.
- All makeup brushes, toothbrushes, and razors have to be separate, if others use them, I get rashes on my face from the makeup brushes, eye infections from others using my eyeliner, mascara, and eye shadow I have gotten thrush numerous times for different reasons, I also have had mouth ulcers and bleeding from infection on my toothbrush. I have had on numerous occasions on getting a skin rash from others using my razor.
- I have to keep the common areas of the household extremely clean, such as the bathroom, kitchen, and laundry I have to use hospital type cleansers, more often than others would clean these areas. I have gotten numerous skin rashes, and boils in my groin and inner thigh area from being in a bathtub that wasn’t cleaned before I got into it. I have to clean it before I get in and after I am done. I have no immunity to fight off infections, what one would shrug off easily, I do not.
- It also is worthy of noting that when I do get these types of problems more easily, it is also more difficult for me to heal and get rid of them. If I would have to document or call into my doctor’s office for every single one of them, they would ban me from the I would be on the phone with them almost on a daily basis for one thing or another.
- Also worth noting is this: just because I don’t call them with the frequency that I should, doesn’t mean that these things are not going on.
Because the courts have had to dissect every single thing and question every little detail, and quibble about how long I can stand and sit, how I can do this or that, and they want every single thing documented, this is the documentation on the stuff the doctors don’t know. In a one-month period, which was November 2018, I documented 4 times in that month I had mouth ulcers and couldn’t eat, I ran a fever of over 100 around 6 times, my left knee went out on me twice, once making me fall out of the bathtub when I was home alone, and once when I was walking down the street to the store and spilled me on my face on the sidewalk, I then skinned my leg and elbow, which stayed as open sores for almost 4 days before they finally started to scab over. I have night sweats almost nightly, that month it happened 25 times. Those are just the extras that month, that doesn’t include the side effects and things that I deal with on a daily basis for various other things.
That brings me to a few questions for you:
- How do you force yourself to get through the day when you can’t even find the energy to get out of bed?
- When you finally do get out of bed, the only thing you are able to do is empty the sink and do the Just that little bit of activity tires you out so badly, it puts you back in bed. It isn’t every now and then, this is every single day.
- How would you feel if all of a sudden one day you couldn’t even pick up a laundry basket and take it across the room without having to sit down halfway to your destination, would that make you feel useful or productive? Have that happen with the frequency that I do, and you feel the same way I do, useless and
- How would you feel if every single day, you have to take medication that you know is going to make you feel bad? That when you do, you end up feeling like you want to throw up all day or When I took them in the daytime, it was all day, when I switched to taking them at night, now I am up all night, up and down, wanting to throw up and not sleeping a full night.
In between getting up to feel like throwing up, I have to get up to pee. I end up doing this at least four times in an 8 hour period. I have tried to take sleeping pills and melatonin so I can sleep soundly. It ends up that I sleep so deeply, I can’t wake myself up enough to get up to go to the bathroom, and I end up wetting my bed. I can’t go through the day without wetting myself at least a dozen times. I have to now use incontinence pads, which is horribly inconvenient, sometimes the pad isn’t long enough or positioned correctly, and then I end up with urine running down my legs. I have no control of when this happens, it can be anywhere at anytime. It can be set off by my coughing, sneezing, having the need to go and not being able to get to a bathroom in time, or it seems if the moon shifts to the left. I can’t wear a skirt without worry in the summer. I run into problems when I am out in public and am in situations where I don’t have access to facilities. I am lucky in the regard that I am able to access supplies through my Medicaid without cost, but it still is a huge issue for me. There are no other methods or ways to improve this outcome. The end outcome is going to be loss of function, there will not be any improvement, so I just get to wait until that time has come.
I do not have a consistent time frame of how my illness treats me to say I can work this day or that day. I wish I could predict them, I wish that I didn’t have not-able-to-work days at all. I don’t even know what it is going to be that is wrong. One day I will have a fever for no reason, and one day I might have thrush so bad in my throat that my voice is gone. I will wake up and my vision is compromised, I see black spots, or my vision goes in and out, then last year, I was diagnosed with Macular Degeneration of my right eye, which will result in blindness. Again, it is slow progression, but in the year since my diagnosis, I have already noticed changes. I cannot see clearly in my peripheral vision and have to turn my head physically to the right to see. I also now have to use bifocals and have cataracts in both eyes. They say they aren’t “bad” enough for correction yet, but if I would get them corrected, it doesn’t take away the fact that it will not correct the Macular Degeneration in my right eye or predict if I am also going to have that in my left eye. Because of my neuropathy, I will wake up and have numb hands or feet, or both, the next day, it will be pins and needles. It has become such an issue, that I no longer will drive, even if others say I can. I cannot feel my feet on the pedals, and I don’t have the reflexes I used to in being able to correct an error if I would make one. Add that to my vision issues, and i feel I am now a menace on the road. This has also made it difficult for me to get around like I need to and to get to appointments with the frequency that is required of me. I struggle with transportation all the time; I am currently attempting to make that easier with government agencies that I have been referred by. It still presents a major problem in the consistent care that is required of me, but I do my best.
I am able to still get around and walk and shop and do for myself, but there have been significant changes in these areas. With the issues of mobility that I am now having, I can’t walk with confidence that my knee or my ankles are going to work properly. I am currently in process of doing bone scans and bone density tests to see where I stand in this area. I was diagnosed with Degenerative Arthritis in my left knee and both of my ankles. I also have arthritis in my right shoulder from a car accident and collarbone surgery from 1999-2000. I have a plate and 6 pins holding my collarbone in place and cannot lift my arm over my head. Weather also affects these concerns- in cold weather, things ache, in wet weather, I have extreme pain in all areas mentioned. When I am able to get to the places I need to, I still have problems. I am lucky that I have a grocery store and a dollar store across the street from me, I am able to purchase the things we need and transport them home. However, after I am done with these tasks, my chronic fatigue kicks in, and I end up in bed recovering from the trip for the rest of the day. I end up with weakness in my legs and fatigue throughout my entire body. I run into issues with this as well when I go to my counselor’s appointments every 2 weeks. I have to take the city bus downtown, walk 6 blocks to my doctor’s office and then walk back to the bus station and then back home from the bus stop. I am in bed for 2 days after I go downtown to recover from the trip. If the weather is bad, be it raining or snowing, I run the risk of illness from being in bad weather for a long period of time. Even if I bundle up, hat, gloves, scarf etc., I still end up either with a cold or running a fever off and on for a week. If it is too hot or humid, I can’t breathe and I am not able to make the trip, I get breathless if I exert myself too much. I am not able to walk at a fast pace anymore and it takes me longer to get there.
When I do any shopping, I have to go first thing in the morning when they open, that way there aren’t a lot of crowds. I am not able to be in large crowds anymore, I am always afraid that they are going to get me ill with something I can’t recover from. I have to make an assessment of myself every day when I wake up, I take stock of ailments that are bothering me and what I have to do about them, I then have to assess how much energy I have that I can address things or activities of the day, be it appointments with various doctors, agencies, or family and friends. I have very little social life. I have to spread myself to the things that need my attention that day. You don’t want anyone around you to know that you are slipping or not able to do things anymore, or that you are having problems. You spend a lot of your energy in hiding. I live in fear and hiding every single day. I have to hide just how bad I feel, I hide from my kids, my friends, my mother, anyone I come in contact with. Nobody’s supposed to know you feel bad or can’t do something anymore. When you live with this disease as long as my family has, it starts to consume you, not only in medical ways, but in yourself and your everyday life. You feel bad in asking for help, you feel bad in the fact that you have to ask for help. It becomes part of your daily discussion and your every thought and action. My children have lived with this over their heads for most of their lives, they don’t want to hear about it all the time. Your friends get sick of hearing about it, they don’t want to hear how bad you feel all the time. You put on a good act for them and tamp it down and try to ignore it for a while. Your mother is of a different generation and doesn’t understand, so you can’t talk in great detail with her. You start to isolate yourself because you don’t want to be the Debbie Downer, the whiner, the complainer. Then one day, you look around and you are alone. I have been fighting to overcome that, I now belong to two different support groups, I also belong to four online groups. I am trying to get out more and get involved in things, it is difficult for me when I don’t have all the energy I want to have. It is difficult enough to get through the day with this disease, when you live with the fear every day and the uncertainty, and the loss of dignity when you have to rely on others to support you makes it even worse. People have to realize this disease doesn’t treat everyone the same, it doesn’t affect people the same, and when someone says they can’t do what they used to do, they aren’t whining, they aren’t trying to get one over on the system, they are saying they aren’t able anymore. When that does happen, it is up to us as a society to listen. When doctors and “experts” say that you aren’t able, their opinions are supposed to hold merit.
In my opinion, I have already been found to be disabled in every single way that has been required of me to present, and every expert that I have presented this information to has agreed with the assessment, except in one area and is the most crucial, and that is financial. I have several examples in the way I feel that I have already been found to be a disabled person to qualify for your threshold of expectation. I may also add that it is a ludicrous notion that I have been fighting for 16 years for a label that most people who are severely disabled fight like cats and dogs to have not be placed upon them. These are the things that I want for you to take into consideration:
- Every agency that I am attached to in all levels of government have found me to be disabled in some way or another based upon all their requirements.
- I have been on Section 8 vouchers since around 2010, I got into the program under the AIDS advocacy program as emergency When I moved to Kent in 2013, I came into my new home under a disability consideration that is still relevant on my current voucher.
- I am no longer on regular Medicaid, I am on Disability Medicaid, and have been since 2013.
- I am also under the Ryan White program through Equitas health for disability health concerns and assistance. I have been a client of theirs since my diagnosis in October 2004. I am still a current patient.
- I was receiving Disability Financial Assistance through Jobs and Family Services until the program was You have to have a legitimate disability claim that the State of Ohio signs off on to qualify. I will have to pay back the State of Ohio for this program when and if I am able to get my benefits, even though it is no longer relevant.
- My primary care doctor made it possible for me to be able to get a disability placard for when I travel in a
- I am also on the disability program for PARTA, so I am able to get reduced fares.
- I recently signed up for NETS program for other transportation, you have to qualify for this program as well.
- My federal student loan obligations were permanently discharged from repayment due to my terminal illness. Getting student loans discharged is virtually impossible, they will go after someone’s estate after they die for repayment.
- I do not qualify for any type of life insurance policies due to my terminal illness.
- I was rescued from the work obligation for certification of my food stamps due to my disabilities twice in the last 3 years.
- I have been excused over 5 times for jury duty as I have been deemed not fit to serve.
- I have proven myself to be disabled with all of my medical records of various doctors, as well as over a year’s worth of counseling.
- I have proven with all of my statistics that my claim is legitimate and has been since the day it was filed
- Not only should it have been approved at the first level, in the seven years that I have been attempting to get this accomplished, I have now other diseases and conditions that, in and of themselves, would qualify me for the benefits I am applying for.
And even with all of this….. there seems to be more to this conversation.
Since my last hearing a few years ago, I have made large strides to better my situation in any ways that I can. I have become an advocate, activist, policy maker, public speaker, and a professional writer on this very topic. HIV/AIDS has become the main topic of my life and my conversation. I have spoken to students in the AIDS and Women’s Health class, taught by Professor Kerr, at Kent State University as a guest speaker twice. I was an assignment her students had to write papers on after my speech. I have included those reports in with my statement for you to view and consider. It says a lot that someone has the ability to get up in front of a group of strangers, young people at that, and tell them the horrors and private details of your life and illness, and how it really is to live with this disease. Not that it is incorrect, but the mainstream media and agencies and people in the HIV community spend all of their time and resources now in projecting the image of how much better life is while you are positive. The medications are wonderful now, and people can live a “near normal” life, U=U, PrEP, there is a cure around the corner, we have the current administration in office and government saying they are going to eradicate the entire disease by 2030. In the midst of all this, I am standing here screaming into the void, saying, “Wait a minute! What about this, or that, or there are still thousands of people who die of AIDS related complications every year, what about them?” As I have said previously, and will keep repeating, this disease doesn’t treat everyone the same, I am the first one out there who applauds all the advances out there, and yes, I pray every single day that all these things come to fruition, and even better, I will be here to witness and see it all happen and unfold. I also wish and hope I benefit from all the advances that can come my way.
But, I also have to say over and over again, I am a realist, and I see how much I have and continue to struggle on a daily basis. This point needs to be repeated, it keeps getting lost in the translation.
I have also had two articles published in a prominent organization based out of San Francisco, California [HIVE]. I have had a lot of support and a lot of positive feedback and empathy to my story and situation. I have also included both of those articles into this statement to be considered as part of my record. I have also had a college student from Maine ask my permission to use my story and record for her Master’s thesis paper on HIV, and the way it is handled in the U.S. vs. Africa. I have also had a college student from Akron University ask my permission to use my case through Equitas for her college senior thesis in her graduate program on her Social Services credentials. I am a co-sponsor and member of a new support group, called the SSEOUL group out of Akron, Ohio, that is in the process of getting their non-profit organization status active. I am in the process of being placed on the NEORAG board, and I have submitted proposals to Congressman Price out of the Portage County District office in rehabbing a vacant church in the Kent area into a community center for HIV/AIDS.
In Portage county, our community has absolutely zero community, or any type of resources available to us in any way. I have to go out of district for almost every single doctor appointment and I have to go out of county for any type of community support. Our community has been completely ignored, as have I. This won’t do any longer. This community is here among us, struggling every single day, and we are being passed over at every opportunity for any reason.
We seem to be fighting against language as opposed to policy like never before. All this positive language has done nothing but harm the ones like me who are legitimately ill.
Sixteen years of having a severely compromised immune system has been a problem in and of itself. Because of my damaged system, I may be 47 years of age, but on the inside, I am already in my late 60s. This disease has aged me not only on the outside, but also on the inside. I am coming up with diseases that don’t show up in women until their late 60s, I am coming up with skin conditions that have no explanations to anyone, except for WebMD says are related to a damaged immune system, that is prevalent in HIV-positive women. When I question my doctor, he shrugs his shoulders and says he doesn’t know why. It is extremely difficult for me to have a good rapport with a doctor who told me the first time I went to him for treatment, 16 years ago, that he never writes favorable reports for any of his patients, as he doesn’t believe in disability for HIV patients. By the time I figured out what exactly that meant, it was too late. I even tried to find another doctor and was with another one for about 6 months. I came to realize that the new one was even worse than the old one, I had no choice at that time, I had to go back to the old one. I have been there ever since. During that time, I don’t ever feel that I can have any kind of dialog or honesty in my treatment. The problem I face is, there are only about ten Infectious Disease doctors in this area, and they all operate out of the same office.
I have the opportunity to change my doctors to Cleveland-based doctors, however, if I am having difficulty in getting to my various and quite regular appointments in Akron, I don’t see how I would be able to change over successfully to Cleveland based doctors. If I change over to a new doctor that is in the same office, I run the risk of that doctor being predisposed by my old doctor, and then I would not be able to overcome the very issues I am having with my current doctor. It seems that I am stuck in a no-win situation. None of this has ever been brought up in previous hearings, I have never been asked for one reason: it wasn’t until recently that I started putting the pieces together and seeing the problems I am facing in this litigation. Every single time I am either in a different portion of the courts, or another hearing or appeal, all decisions of fact seem to spend a lot of time and energy picking apart the doctor’s assessments. Because of one word or inflection they may or may not put in a report, I am flung into the court abyss, where I have been allowed to flounder around for over a decade. In the meantime, I am slowly but surely going downhill. Just because I am not flying headlong into a tree doesn’t mean I am still not going down the mountain.
Sounds like I am a relatively, busy, active person by the admission of the things that I have listed in previous paragraphs and statements. These things may be time consuming and more importantly, energy consuming, but they are also important to me. It also doesn’t mean that because I have these things going on in my life, that they are not viewed or not handled in the same manner I would if these activities were money producing or employable. If my health dictates that I am not able to perform or attend these activities, I do not attend. I apply that mandate to any and all activities I am involved in, be it anything as small as if the dishes get done that day, if I can’t do it, I don’t. As much as I like to be involved and to be active and engaged, there are many opportunities that I have to say I cannot do this or that because of my health and where that might be that day. I cannot be dependable in the ways that I am required to be. I wish with all my heart that could be a different outcome, it is not.
Last year, there were 7000 people who died from AIDS-related complications in the United States. The bottom line is, there are still people dying from this disease that everyone, including all that sit in judgement on this court, are thinking that that isn’t a big number. When you compare that number to what the numbers were in the beginning, yes, thankfully, it is smaller than before. But in quoting that stat, I am lining up to be one of those 7000. It is an undisputed fact that while the data and the science we now have to keep us alive and going is a wonderful thing, we are also at the same time, ignoring the fact that there are STILL 7000 a year who die. I do not relish the idea or the fact that people seem to be OK with standing on the sidelines and just waiting for me to be one of those numbers.
There has not been one single person that has stood up for me and said, this is a person who is suffering from AIDS. Even people in the positive community don’t like to use the term AIDS anymore, it seems strange to others when I tell them or correct them when they say to me that I am only HIV-positive. That is not correct, I am an AIDS patient. As being an AIDS patient, I am here before you, demanding that I be treated as just that, an AIDS patient. Since I am an AIDS patient, I am afforded the right to be regarded in the same light. As I have shown, stated, and presented in my case and facts, I have proven beyond any reasonable doubt that this is what I am, and I will say it again, I am an AIDS patient. As an AIDS patient, I am supposed to be deemed a disabled person, and with being a disabled person, I am afforded the right to have the financial relief that is offered to us. You have repeatedly attempted to say that I am not what I say I am, I have shown you, over and over again, that I am exactly what I say I am. It is now time for the courts to see me in the same light as I see myself, and finally, after all these years and all this heartache, to award me the benefits that I have fought for so hard. I do not see any other reason to delay the inevitable conclusion of this case. I thank you for your time and attention to this matter. I hope beyond anything I could ever imagine that my words will finally make the difference I so desperately seek.