Thrown Away: The Desperate Stakes that Disabled People Fight in America

Family: D and one of my sons are shown walking down a country road hand-in-hand. They are viewed from behind, D is traveling with his power chair and my three-year-old son is walking beside him while pointing something out. The road is flanked by a forested area.

I watched with pride as my brothers and sisters with disabilities from ADAPT put their lives, health and legal status on the line to save all Americans from the destruction of health care. Some were friends or friends of friends. I listened for reports that they had come out of jail ok, that their basic needs were being met out there in the thick of things. I had to stop reading the hateful and ablist comments posted on news stories about them. These are my friends they are talking about; good, talented, creative, selfless determined people. Real people, not hypotheticals. People wrote that they thought my friend’s lives weren’t worth living, that they were a drain on society. Other comments were from those who thought that their claims of the risk of loss of medicaid funds meant that their freedoms or even their lives were at risk were over exaggerated. Mostly, there seemed to be a lot of misunderstanding and a lack of awareness about what it is really like to be disabled in America.

I knew and the ADAPT protesters knew that every protester out there was representing not only themselves, but the severely disabled people who were unable to protest. Those who are too sick to risk being thrown around callously by police. Those who were institutionalized in group homes or nursing homes or other institutions. Those who were too poor to be able to make it to a protest. And those who lacked the support services to take care of their needs during such an undertaking.

One of those people who could not protest is my dear friend of 23 years, who I will call D, lying in his bed a few blocks away from me. He has been essentially lying in that bed since 2012. He can’t walk due to a spinal cord injury that left him a quadriplegic at the age of 17. He has some arm movement but he has no movement in his fingers. He can’t lift himself into a sitting position due to the atrophy caused by years of what I will call medical warfare. He lacks needed durable medical equipment, he no longer has a working wheelchair. He has not received proper physical or occupational therapy for years. At 42, his hair is receding, long and straggly in the back, and his beard is greying and unkempt. His face is thin and a pale white-blue due to lack of sunlight. One of his legs has been amputated years ago from a common pressure wound gone infected. His torso shows his veteran status of multiple years of medical warfare. Many scars crisscross his stomach, going around and between intrusive medical equipment. His ostomy bag on the right side, portions of his intestines were removed when they started hemmoraging a few years back. On the left side, a feeding tube leads to his jejunum, and below that is a perfectly round protrusion beneath the skin, a hockey puck-sized medtronic infusion pump, which releases a constant stream of antispasm and pain medication.

The initial reactions from many strangers and some medical personnel and social workers is that of a casting off of this poor person who doesn’t have any quality of life. Most of his needs are taken care of by a ever-changing staff of home health nurses, homecare workers and CNAs that come and go regularly from his apartment. Where is the dignity? What is the worth of this life? Many times I have had these conversations with people whose job it is to make decisions that will have a dramatic impact on his life and health. Shouldn’t he be “put away” in a nursing home? Shouldn’t we talk about palliative care? Should a DNR (do not resucitate) be signed? He can’t make decisions for himself! He is not capable! Something needs to be done. The something always is the path of least resistance for the particular staff person. Maybe it is institutionalization. Maybe it is palliative/hospice care. Maybe it is death.

When D is hospitalized or is in some type of frequent crisis, I usually get a call from his ever faithful and loving 82 year old father. He stuggles to get around these days. He has heart disease and is in need of support himself. He is also caregiver for his 83 year-old wife, who is twice a cancer survivor, uses a walker to get around, has poor vision, and is showing some signs of dementia. I know what he wants. He wants me to show up, to go to the hospital and make it known that there are people who love this man. To show that he is important and not forgotten. To say, “He is valuable. When you make your decisions, please don’t throw him away.” I myself have severe vision and hearing impairments and kidney disease. I try my best, but I also can no longer do as much as I used to be able to do to support D.

The D Beyond the Medical Warfare

D was the youngest of five children in a Marine Corps family. His father, three older brothers and one sister all joined the marines before he had made it to highschool. D was the star of the family in some ways, the spoilt favorite. Bright and science minded, shy and polite, he was a bit of a goody two-shoes. He was an alter boy, he got good grades, was a talented violinist, never got into any trouble, didn’t drink or do drugs, and although wasn’t a gifted athlete, he ran cross country and played basketball. His summers were spent at band camp, Boys State, and Model UN. He hung out with the neighbor kids around his lakefront property in a small town in Kansas. His father had retired from the marine corps a few years after he was born and so the family’s military brat days were over. D was the only one of the 5 kids to never have to move every few years.

He was coming home from helping his classmates with a senior homecoming float when his life changed in an instant. Whenever he tells this story, he has to go through a series of questions to prove it wasn’t his fault. For some reason, people need all these things to be ticked off before they can offer empathy. He wasn’t drinking, he wasn’t high, he was wearing his seatbelt, he wasn’t speeding. He just had an accident. In the dark of the night on a dirt road, he misjudged a curve and flipped his car. A life flight helicopter trip to the hospital would confirm what he already knew. He had broken his neck. He had a C6 spinal cord injury.

He spent his senior year in the hospital, yet still he was a star. He was a hard worker in rehabilitation. His therapists loved working with him because he was so determined. He kept up with his studies and graduated on-time; Valedictorian even. He was nominated for prom king, his classmates rallied around him. His military goals dashed, the Commendant of the Marine Corps annointed him an Honorary Marine. He went on to give back by participating in a wheelchair cycling fundraisers for the hospital where he had spent more than 6 months.

He took a gap year spent at the reknown Craig Hospital in Denver, Colorado. Craig specializes in spinal cord rehabilitation and there he gained strength and refined his skills even more. It was at Craig where he came into his own as a person with a disability. The atmosphere was always positive and can-do. The rehabilitation specialists were knowledgeable above and beyond what his local hospital could provide. There were positive disabled role models. It was a fun, lively place to be. The fact that he was able to go there on his insurance company’s dime was no small feat and took lots of paperwork and phone calls to make happen. Today, more stringent regulations and HMO rules would make this very unlikely.

He did well in college. He majored in computer engineering and would often be leaning over a breadboard and using specially designed adaptive wrist splints to manipulate wires and circuits. He got good grades and studied hard. We spent our weekends together going out to local night spots, attending concerts and theater, driving around to picnics at a lake or just hanging out at the dorm. I remember one day when we went out to the courtyard so he could show me wheelchair dancing, which he learned at Craig. We salsa-ed to imaginary music while people started gathering around cheering us on. Another time D, his brother and I took three wheelchairs (D in his power chair and his brother and I in manual chairs) to a nearby empty parking garage. D would pull us up to the top with his power chair like a train. And then we would go flying down the ramps in our chairs. Our mutual disabilities disapeared when we were together.

It wasn’t always easy. He had a team of 3 attendents then. Two of them alternated days and came each morning to help get him up and ready, and I was sort of the attendent-at-large that helped other times. Once, I was at work and he called, stuck under a bookshelf that had fallen on him. I had to tell my boss that I had to go home and lift my roommate out of a bookcase and I would be back in 20 minutes. Not a big deal until this kind of stuff starts happening every week or so. Another time, his infusion pump was malfunctioning, and to get him to the hospital, I missed a final exam. Although I was able to make it up after some convincing, it didn’t stop my mother from yelling at me for 1/2 an hour. But back then, the crises were fewer and farther between. Disability was a thing to contend with, but it did not so much get in the way of life.

The D I know is a brilliant technical thinker. A very detail oriented perfectionist. A talented artist who can draw lifelike sketches even after his hands were paralyzed. He is kind and unassuming, Open to different people’s perspectives and likes to contribute and feel needed. He has a quiet spirituality that he subtly passes on to others. This is a guy who encapsulates the type of talent that silicon valley is looking for and who is the type of person that people admire and talk up when they talk about good, patriotic, citizens.

But instead, society keeps trying to throw him away.

The Constant Pressure Toward Invisibility and Death

I will never forget the time I waiting in a surgical waiting room when the skin surgeon came out to talk to me. D would have been about 28 years old. The surgeon was supposed to debride the wound and close it up. But when he came out he told me that he could not close it, the MRSA infection had entered the bone, and there was no hope. This was my first of many conversations about hospice care. Basically, he told me that D had months to live, nothing could be done, and I should just focus on making him comfortable. Oregon had passed its assitive suicide law, and he even offered to put me in touch with a social worker who could help to carry that out. D wasn’t even out of recovery yet.

This was over 16 years ago, and it’s when I first really started to feel the constant pull of society’s desire to just get rid of disabled people. It seemed like if you weren’t vigilant, if you weren’t constantly fighting what you were told and putting your foot down, everyone was just perfectly willing to let disabled people wither away somewhere and die. Everyone around you just wants to give up and when you are feeling fatigued with illness, it puts you in the very vulnerable position of just giving up, too. This is where I learned that people everywhere are constantly going to wave you over to the path of least resistance. The one where they don’t have to think about you anymore, where you will fade away like a ghost and no one will notice. This is when I started to realize that society really does just want disabled people to die.

But 16 years ago, we still had our oasis. I called Craig Hospital and asked if it were true, that nothing could be done. No, they said. We can get him infection free and close the wound. But it will take months of diligent full-time care. So, the next 8 or so months, I learned how to manage a PICC line, infuse IV medication, and change wound vac dressing. I flew with D to Craig where I had to yell at airport security to not tug on his wound vac machine or his IV pump. He was there for months, and I was in and out during multiple surgeries and rehabilitation. He recovered, but the toll was great. I lost my job (my mother was diagnosed with terminal cancer literally the week D came home from the hospital. To spend some of her last few months with her, I had to resign. I had already exhausted their patience.). D’s family paid thousands upon thousands of dollars and took time off work. The administrative work to get insurance companies to authorize different treatments was astronomical. It took a huge toll on my health. I ended up being hosptialized with my own MRSA infection.

What Separates Impairment from Disability?

But if you had to deal with all of these health issues, not to mention the functional limitation issues, wouldn’t you hope that at least society would support you so that you could be the healthiest you could be? That you could live up to your potential and contribute the most you could to the world? That you could enjoy life as much as possible? If social policies truly supported disabled people, it would help everyone by saving money on preventable health issues, allowing more disabled people to go to work and otherwise contribute their gifts and skills to their communities, and make for more efficient distribution of accessible healthcare for all.

That is far from what is happening for most disabled people. Most of the time, they are fighting for any scraps they can get and are being caught in constant catch-22s where they have absolutely no margin of error. Any small mistake could put them in a life or death situation where someone else is going to be applying strong pressure for them to choose death.

Drowning in the Social Services Quagmire

Remember the pressure sore that was caused by his mattress? Well, that entitled him to a special circulating air mattress that would not only help him heal but would prevent these sores in the future. However, the mattress costs over $10,000. And his insurance said they would only pay for him to rent the mattress each week he had a pressure sore rated stage III or greater. So, for a while, it was this cycle of a nurse having to come in every week and inspect his sore and write an authorization for the mattress, which D would have to then get to the insurance company so they wouldn’t come and take it away. As the wound healed, he lost his authorization. He gets the mattress taken away, and guess what? The sore worsens or another one develops. Back to the hospital, a mattress is reauthorized and a delivery company comes back out and sets it up. All of this takes hours of time to administer and keep on top of, not to mention the pain and futility of being stuck in bed by a preventable wound. Finally, D’s parents helped him buy a circulating air mattress off Amazon for around $350. Now these mattresses tend to get leaks as small holes develop from wear and tear, so this is a constant ongoing maintanance and expense issue. Hundreds of thousands of hours and dollars have probably been lost, not to mention the pain and illness caused by insurance companies just not letting him have a permanent mattress and then overpricing the mattresses they do provide.

In everything disability care related, there is this idea that a person is cheating the system by using or taking too much. The systems demand constant justification for any product or service, and the onus is always on the disabled person to prove that there is enough of a medical need for it. For example, D uses catheter bags. Each month, he only gets 2 catheter bags. Attendants have to wash them out and reuse them each day. This also raises the risk of urinary tract infection, which again cost more in medication and hospital stays. I always wonder if there is some meeting where people randomly decide that 2 catheter bags is enough, and without that limitation, there would be rampant abuse of people crawling out of the woodwork to steal more catheter bags than they deserve.

Becoming an Inmate

Now, this is the essence of what the ADAPTers were fighting for. Community-based attendant care. Despite a landmark supreme court decision (Olmsted, 1999) that mandated that people with disabilities had the right to choose community/home-based living situations, the ability to hire caregivers to work for you in your home is not a right in every state. Institutional care is the default and is provided in every state. Institutional care is much more expensive, and curtails a persons freedoms and quality of life. States don’t have to provide community based care, but some states do by applying for a medicaid waiver, which redirects the funds that would normally go to a nursing home to the individual person’s use in hiring their own caregivers.

Every year, D has a meeting with the state social workers to requalify him for home health care. The caseworker asks him in very specific terms what he needs help with and at what level the help needs to be provided. These are things like bathing, toiling, transferring, cooking, cleaning, etc. These needs are plugged in to a computer algorithm that has a specific time allotment for each task. These time allotments are universally applied and no consideration is given to individual circumstances. Toileting needs to take ten minutes. Bathing 20. Cooking is always 15 minutes. That certainly limits what food can be prepared. Woe is the person with specific dietary needs or wants to eat heathful, unprocessed foods. All of these times are added up and divided by days in a month, and that is the amount of pay you get to pay your caregivers. The funny thing is, some months have 28 days, some months have 31. Some months have 5 weekends, some months have holidays when your caregivers won’t work. There is no accounting for these variations. It can make for interesting time tracking, which is required in detail.

D is slow. Part of this is that he has a meticulous personality, and part is because his health issues force him to move more slowly. For example, his hypotension means that he can’t sit up all at once, he has to do it gradually over time. His GI issues force him to eat slowly and in phases. There is no alloting for these needs. So inevitably, caregivers are not getting paid for the actual work they do, or they leave before the work is done. The job is a transitional one by nature, and it is hard to keep caregivers sometimes. Pair that with the constant, constant threat of law makers perrenially trying to cut the budget for the program, or eliminate it altogether.

Another issue around the medicaid waiver is the work vs. poverty catch-22. Different states have different thresholds and rules for disabled people making money or working while getting home care services. In many states, you have to be at or below poverty level (about $800 a month for a single person). If you work, you lose your home care, which is how you get out of bed to get to work, so you can’t work. Most disabled workers would never be able to afford the $30,000+ it would take to pay caregivers privately. The stinginess of states who participate in these programs is illogical when considering the real costs of what they end up paying in added hospitalizations, lost wages of the disabled person and family members, unemployment payments to caregivers who lose jobs when someone is institutionalized, and institutionalization itself. It is to the state’s advantage to actually support a person fully with what will actually work to prevent illness and allow them work and community participation. Their stinginess is caused partly on their lack of knowledge of the real lives of disabled people and because of prejudicial attitudes about investing in the disabled.

The Prison to Nursing Home Pipeline?

But even though there are several problems with the community-based waiver program, they pale in comparison to the problems that people face in institutionalized care. The parallels between D being imprisoned in his nursing home and my other friend being — well — imprisoned, were not lost on me. Prison was harsh and caused great risk to my friend’s health, and D’s nursing home — although much more benevolent on the surface — was harsh and caused great risk to his health.

Often, people ask me or D whether nursing home care — 24-hour care in an institution — wouldn’t be preferable to the 5 hours a day of care he fights for at home. Not by a long shot. First of all, 24 hour care is not really 24 hour care. Nursing homes are notoriously understaffed and 1 or 2 CNAs might have a whole ward of patients to care for at one time. They may be able to give you 3 minutes here and 10 minutes there. But this is on their timetable, not yours. If you are not ready for them to help you up? You might be in bed for the day. You lose space for your things and privacy, you have no control who your roommate is. Noise levels at all times day or night can be quite loud. There might be no internet access in a nursing home unless you provide it yourself with a hotspot or something, which you would have to find a way to pay for. This can isolate you from your friends and family, as can the fact that you usually have very little choice in where you go. You can be taken miles and miles away from your support network. You usually aren’t free to come and go as you please, and there is usually not a lot of activity there. You obviously cannot have a job or career in a nursing home. Nursing homes are also notoriously skimpy on food. When D was in one nursing home, we were constantly bringing food in to supplement the mostly white bread and baloney sandwiches he was given each day. When D was in for his amputated foot, he developed yet another pressure sore on his body which required skin graft surgery and took him out of contention for almost two more years.

Worse yet, it can be very hard to “escape” a nursing home once you are in for a long period. When D was in a nursing home for about 8 months, he was pressured to become a “long-term” resident. What this means is that his entire SSI check would go to the nursing home. He would lose access to any low income housing he had. There would be nowhere to go home to. He would lose all financial decision-making power. The nursing home would also become his primary care provider, and choice of doctors, medications, etc. go out the window. At the time, the staff was not anxious to let him out. Nursing homes are largely for-profit businesses and make money by having bodies in beds. There was really no incentive for them to help D rehabilitate and get set up to go home. And the longer he was there without much rehabilitation to speak of, the more impaired he became.

At one point, he needed a new wheelchair. This is no small undertaking. Physical therapists have to be called in to do evaluations, aurhorizations have to be made, a seating system (which can require body molding) has to be developed and fidgeted with. Modifications have to be done. And to get this done in a nursing home when they are understaffed and are motivated for you to stay in their bed anyway? Its an uphill battle.

And that was the catylist for D being basically bedridden since 2012. The nursing home didn’t want him to leave and didn’t lift a finger to help him get his chair or get out. His body atrophied and worsened to a state where it would take intensive rehabilitation for him to be able to get up again, and it is very hard to not deteriorate both mentally and physically when you are running your life laying down in a bed. Haircuts, dental appointments and physical therapy go by the wayside. Life becomes just a constant battle to get through each day alive. The next meal, the next prescription drug when it is a major event requiring an ambulance to go to a doctors appointment. Who can come empty the urine bag? Who can fix the broken sink? Its time for a new air mattress but there is no way to get out of bed to install the new one. Meanwhile, lack of sunlight and good nutrition and continued muscle atrophy are making you sicker. Here is another UTI, and there is another GI issue. Call 911. Back to the hospital. Well, at least there is a change of scenery.

But there is danger again at the hospital! The caseworkers there judge your poor condition and think you can’t take care of yourself and you should go to a nursing home. They call your attendant and when she is out (because you are in the hospital so she is not getting paid to wait for phonecalls on your behalf) so she doesn’t immediately answer, and its determined that you don’t have enough homecare support and so you should be removed from the homecare program and be institutionalized. And another fight, another call to the troops to drop everything and come to your aid, and maybe another save. A few more months at least, at home under your own autonomy, until the next fight where someone wants to throw you away and make you invisible again.

Fighting to Even Have the Right to Live

Some people say that disability is the end of the social contract, the canary in the mine. There is that famous Niemöller poem from World War II that starts “First they came for the Socialists, and I did not speak out — Because I was not a Socialist….” People who know their disability history know that actually, first they came for the disabled. Disabled people are at constant risk of being eliminated or thrown somewhere to die even to this day. And the most scary thing about that is, we cannot control whether we are disabled. Illness and disability is something that happens to the majority of the population at some time or another. When we lift up the support and quality of life for the disabled, we change all of society for the better.

D was hospitalized a few days ago for a UTI and now has been whisked away to a nursing home that is over two hours away from his support system. I can’t drive, and his parents are in their 80s and really shouldn’t drive. I always wonder, is this it? Is he going to give up and die? Am I going to give up on him? Twenty three years of my friendship with him have left me poor and tired and discouraged. Options such as Craig Hospital are gone. His parents have spent their entire retirement income in support of D. Options are getting narrower as the years pass. Sometimes I feel like I just can’t do it anymore. I have nothing left to give. I can’t fight this fight again. But then, inevitably, I have a dream, and he is there. He summons me in the night, “yes, you can. We can. I have not given up so don’t give up on me. I’m coming home soon. I’m coming home to my heart.”

This is not a person who can be made invisible or thrown away. None of us can.

#ADAPTandResist

Lisa Ferris lives with her husband, 3 boys, 2 guide dogs and 3 guinea pigs in Portland, Oregon. She is co-owner of an adaptive technology company.

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