Disability Wrath Month

July is Disability Pride Month. And I could write some empowering piece about how I make my life work even though fibromyalgia and I’ve got all these things that don’t work in the ways bodies and brains typically do and rah rah rah. I know how to write about Pride. I’ve done plenty of it, albeit not necessarily about disability pride. But this disability pride month, it’s time for a little Disability Wrath Month instead. 

Disability Wrath Month Started with Something that Happened Half a Year Ago

Last summer, illness caught up to me, and I spent a month in the hospital, including a few days in a coma. And since then, I’ve been in rehab doing a lot of things to get stronger and regain function that I lost when I was sick as well as learning to deal with some of the lingering side effects of being in a coma. I’ve made the best of this long stay here, connecting with nurses and CNAs and really doing my best to focus on recovery, rehab and keeping a positive attitude.

I was doing well, too. I was much stronger than when I got here. I’d learned how to manage some things differently with my new post-coma challenges. After two and a half months of hard work with physical and occupational therapy, I was on my way to getting out of here. Not quite there yet, but I could see the possibility ahead of me. And then, one day in November, when I was wrapping up my occupational therapy session for the day, I started to get back into bed. And as I stepped backwards to sit down, something happened to my knee.

Disability Wrath Means: When I Say I’m in Pain, LISTEN, Because I Have the Tolerance of a Steel Girder

 I’ve got hypermobile joints. Joints popping or dislocating or just doing strange things is normal. I’m often on the phone with someone and I say: “Oh hang on a moment. My knee is bending the wrong way. Let me pop it back in.” They freak out. I don’t. Because I know what that feels like. This didn’t feel like that. This came with an audible “pop.” My joints often make noise like they’re filled with Rice Krispies, but this was a different kind of noise. Whatever happened had me doubled over, swearing and crying. I managed to get back into bed with some help, and asked for an ice pack. Even just an ice pack requires calling the doctor for permission. That’s ridiculous on its own, but fine.

So the next day I spoke with the nurse practitioner who ordered an x-ray. I had warned her that I thought the x-ray wouldn’t show us anything, because it definitely felt like a ligament or a tendon, but I agreed that an x-ray is a sensible place to start. I also said that based on the sound and the place where the pain is, I thought I knew which ligament it was. As expected, the x-ray showed nothing. And the doctor said “Rest it, wait a couple of weeks, and if you’re still having problems we’ll look into it.” 

The ice pack situation notwithstanding, it was a reasonable plan. That was, however, the last time anything was reasonable. 

Disability Wrath Means: Respond to an ACUTE Injury at Least within the First SEVEN MONTHS

I did wait, patiently, and rested my knee. I kept up my PT and OT as much as I could, but the pain made it more challenging. Still, I wanted to keep doing whatever I could to keep getting stronger and to be able to move on to the next set of benchmarks that would allow me to get out of rehab and go home. A few weeks went by and things still weren’t right. I did my part–let the nurses know, and went on with the business of getting better.

At the end of December, month after I’d first injured my knee, I had my quarterly care plan meeting–a meeting where residents have the opportunity to meet with the nursing department, social work department and nutrition department to discuss grievances and to discuss any plans for the next three months, like changes in therapy or appointments with specialists, or tests like colonoscopies that are routine but can’t be done here in this facility.

I brought my list of questions along–what the next steps were to make sure my disability benefits application was completed promptly; how to make sure the appropriate arrangements were made for equipment and services after I left rehab. Important things. Because I thought I’d be leaving soon. And I made sure to ask what was happening with referrals or outside appointments to take care of my knee, because I hadn’t heard anything. It was a busy time of year, with all the holidays in December, and so I was a little bit forgiving about the slow pace of action. In hindsight, this might have been a mistake. 

In January, I began monthly meetings with the palliative care team. As distressing as it was to really feel conscious of all the ways that I wouldn’t get better, I was glad to have more advocates on my team. Palliative care, I was told, could help make things happen, working directly with my doctor on my behalf to ensure the best quality of life possible. I updated the palliative care team on everything that was going on, including things like the difficulty I’d had getting a prescription for Paxlovid for COVID and of course, what had been going on with my knee. 

Nothing happened. Nothing. And there was no new information forthcoming either. 

Disability Wrath Means: When you Tell me you’ll “Talk to the Doctor and Get Back to Me,” ACTUALLY Talk to the Doctor and ACTUALLY Get Back to Me

I kept talking to the nurse practitioner whenever I saw her. And kept getting the runaround. Always “I’ll talk to the doctor and get back to you.” As this dragged on, my knee became more painful and interfered more and more with meeting my physical therapy goals. The solution? I put my social work skills to work. I talked to anyone who might be able to help. To the people I saw everyday like the nurse and CNAs to the people I saw once a week, like the psychologist, or once a month, like palliative care or psychiatry. And every time I spoke with the social work team here, I asked if they had heard anything. 

People were nice about it. “I’ll follow up with your doctor.” “Have you talked to such-and-such?” “I’ll leave a note in the doctor’s book” (The “book” is how non-urgent things are communicated with the doctors.) Week after week, I kept asking. 

Disability Wrath Means: It’s Now March and I am Still Waiting on an MRI for an Injury that Happened in November

And then March came around, and it was time for another care plan meeting. I wrote down my list of grievances. Things like the fact that I didn’t have a working phone in my room so I could make calls to different departments within the facility. The way that certain nurses would withhold pain medication when you asked about it, making up their own rules for what can or can’t be taken together or at what times. Caregiving issues with some CNAs.

It wasn’t all negative.

I had tremendous praise for some of the nurses and CNAs. I wanted to find out what we could do about ensuring I had a Passover friendly meal plan during the holiday. And of course, my knee. I made my frustration clear: I was angry that forward progress in my recovery had been halted. Because of a knee injury that happened during my time here. 

I left the meeting with assurances that people would follow up on everything. I should have guessed that most of them were platitudes meant to make me feel like I had agency so I would stop asking questions. Still, I was hoping that everyone truly had my best interests in mind. Hope, once again, proved to be fickle and foolish.

I kept asking questions. I called palliative care. The same people I’d been talking to for months. And when I met the new case manager from my health insurance company–the one who is part of the team that helps with long term care planning–whether I need to be in a skilled nursing facility, in the community with community support or something else, I explained everything to her. After telling her the whole tale, she was angry, too. She also said she would reach out to the people who might be able to help. 

Disability Wrath Means: I Finally Get an MRI Appointment (8 Months Later) Only to Have it Canceled Because of Insurance

April passed and became May. Finally, someone came to my room one day, handed me a slip of paper and said “You have an MRI scheduled on Monday May 15.” She gave me the information about where the MRI would take place, and the details for transportation and what I’d need. I finally felt like progress was being made. Sure, it took six months, but at least something was finally happening. 

I put the information into a folder, made some notes in my calendar and asked the nurse to help me reach out to the nurse practitioner or the doctor to make sure I could have something for anxiety during the MRI. Early the next week, the NP stopped by and told me what she had prescribed, and that, although she had written the prescription for a specific time, she would let the nurses know what it was for so they would give it to me in time for it to actually work, and not so early that it wore off before the MRI. So it seemed like, after all this time, I was just going to get to have my MRI. Simple.

But nothing is ever simple. Especially when it comes to health care. On Thursday, five days before the MRI, the hospital called me. “Your insurance hasn’t approved the MRI yet. And tomorrow is Friday. We’ll try and get it done, but it will probably be canceled.”

Disability Wrath Means: Going from Doctors Giving me the Runaround to Insurance Giving me the Runaround

Canceled. After fighting for six months to get anyone to just listen to me and look further into what could be going on, I’m being told it probably won’t happen. Canceled over money. Canceled because some nameless, faceless insurance bureaucrat with a medical degree wanted to know more. Not someone who had examined me. Possibly not even someone who knew anything about knees. They might have had a proctologist making decisions about how to take care of my knee, for all I knew. And just like that–with a few keystrokes from this bureaucrat, my appointment was gone.

You can imagine how angry I was, but it doesn’t end there. Because suddenly now I’m back at the mercy of my doctor–the one who took six months of incredible pain (and that’s coming from a person who spends their entire life in pain) and near immobility to make any movement towards finding out what’s wrong. 

The thing about pain is that, even when you’re always dealing with pain, there’s a difference between the regular, every day, just-existing pain and the something-is-wrong kind of pain. My knee is the something-is-wrong kind of pain. I wouldn’t have made a fuss if it weren’t.

Is, not was. ..Still is. Because, after that MRI was canceled, I had to go back to fighting for something to happen. Day after day, week after week, back to talking to everyone who might have been able to help. Back to another care plan meeting where I’m told once again that they’ll look into it.

Disability Wrath Means: The Doctor Unilaterally Deciding not to Take Steps to Reschedule the MRI

This time, the care plan meeting was different. Because both the social work representative and the nutrition representative had to run to other meetings, we took care of their parts quickly, right at the beginning. Which meant the care plan nurse and I could really, really talk. And my meeting was the last one, so there wasn’t someone else waiting for theirs…so we talked. I went into every tiny detail about the saga of my knee. 

She was shocked. And clearly frustrated. She acknowledged that I’d been trying to get help for half a year. And that she believed me that something was actually wrong. She said she had no idea why things weren’t happening, but she was determined to see something change.

Two weeks after the meeting, my doctor finally came to see me. He stood at my bedside, never having examined my knee and told me “I don’t know what you want me to do. There was nothing on the x-ray and I don’t think the MRI will show anything.”

Disability Wrath Means: I’m so Angry I Almost Can’t Advocate for Myself Coherently

I don’t know how I held it together to actually communicate. The rage I felt was incredible. If I could have stood up to scream at him, I would have. I live in this body, not him. I have lived in this body for decades, feeling each system breakdown more and more. So I know when something is wrong. I don’t think the doctor was prepared for my next question.

“Why don’t you think an MRI will show anything?” I listed the reasons why I suspected something was actually wrong, and asked what he thought we should do next.

He spluttered and mumbled and finally agreed to refer me to an orthopedist. And once again, I believed things would happen. This seemed like a very reasonable next step, especially if the insurance company wanted more information before scheduling an MRI. I trusted the scheduler to make the appointment and let me know the details. 

Disability Wrath Means: Doctors, Social Workers, and Nurses Lying to my Face…

Two weeks passed and I hadn’t heard anything. And so I asked the social workers what they had heard. They had been standing in my room when I handed the scheduler my insurance card to make sure she had the correct information. They were both aware of the situation. 

And then they dropped a bomb. “Well the appointment hasn’t been made yet. There are only two orthopedists in the state who will take your insurance. One is in Tampa and the other is in Fort Lauderdale.”

I looked directly at them with barely concealed rage and told them how infuriated I was that no one had actually bothered to tell me this. I continued. “So then what’s the next step?” I talked about how this is normally the time when you call the insurance company and seek out- of- network approval or get them to cover transportation to and from an appointment. I talked about how I was at the end of my rope with this battle and the only thing left for me to do was to contact the county ombudsman for skilled nursing facilities to help with this because at every corner, someone has tried to prevent things from happening. 

…and then Blaming it on Me

The social worker pushed back. She tried to turn the responsibility on me, pointing out my social work background and ability to self-advocate. She pushed and pushed, trying to put the blame on me.

The conversation ended with me pointing out that it was after three PM on a Friday, and that nothing would happen that day, but on Monday I’d begin making these calls. The first one would be to the care manager from my insurance company, who could guide me through the next steps.

Also… Don’t Tell me a Lie I Can Disprove in Five Minutes of Googling… At Least Give me a Challenge

Right after they left, I sent a text message to my insurance care manager. I told her about that conversation, and that I was suspicious, but if that was in fact the case, could we set a time to talk about the next steps. After all, Florida is a big state. You really wouldn’t expect someone living way out near the Alabama border to travel to Tampa or to Ft Lauderdale for orthopedic care.

I opened up the computer and logged into the insurance company website. The first thing I checked on was whether the primary care doctor who I’ve wanted to switch to is actually a part of my insurance plan. I was almost certain he was, but the social workers tried to tell me he wasn’t. Not only was his name right there, but he’s the medical director of the facility I’m in, so I know he sees patients here already, and he’s taking new patients.

My next search was for orthopedists. The default search radius on the website is fifty miles–about halfway to Tampa. That search produced a hundred and twenty-one names within a fifty mile radius. A hundred and twenty-one. I didn’t filter that search further, to exclude the pediatric specialists, but, clicking through the first two pages alone, found more than two doctors who see adults.

Damn right I can advocate for myself. I was trained as a librarian and a social worker. And these people tried to lie to me about my face about my health. They tried to play a player. And what’s next is not going to be pleasant or peaceful

What Now?

For now I’ve been playing things slow. I just left a message. I’ve left a message asking if they provide the required medical escort if I have to travel to Tampa or Ft Laderdale. So that I can let the insurance care manager know when I speak with her. Just in case.

But tomorrow? When they stop by to see me…and I can get my care manager on the phone? I have a few choice phrases for them. “A hundred and twenty one doctors within fifty miles.” “Lying” “Violating the trust of a patient who puts their life in your hands.” And probably a few other phrases as well. “Self advocacy” is one of them. “Taking advantage of patients with cognitive impairment” is another, because, again, if they’re giving this kind of run-around to me, they’re definitely doing the same and worse to other patients. And the biggest one?

“Ethics.” Whether or not they’re members of the NASW (National Association of Social Workers, which has a code of ethics its members are supposed to uphold) what they did is unequivocally unethical.

Not a Lot of Room for Pride this Disability Wrath Month

And that’s why, for me, this month, Disability Pride has been replaced by Disability Wrath. They lied right to my face. To a patient, depending on them for care, for advocacy and support. They stood right in front of me and lied. And if they’ll do that to me–to someone who knows the system and can call them on their garbage–what are they doing to people who don’t know how to ask questions? Who may not have access to the entire insurance company website? And who might not even know that there are resources like the ombudsman’s office and the state insurance commissioner who can help if, in fact, there were only two orthopedists in the state who took my insurance. 

The fact is, this is the kind of thing your disabled friends and family and found-family deal with every single day. Our disabilities, even when they don’t affect our cognitive function, change the way the world sees us. We become invisible, stupid or both. In our wheelchairs, we’re an object or an inconvenience. We are no longer human. No longer deserving of the same dignity as able-bodied people.

Disability Wrath Means: Changing the Rigged System

On one hand, I get it. Disability makes people think of weakness and fragility. It makes them confront the idea of aging and loss and even death. So by our very existence we make people feel uncomfortable and vulnerable. But we’re not just an object lesson for you; we’re also alive. We’re out there trying to do our best. Not in an inspiration porn “If a one-legged person can hike across Canada then I can go to work with a hangover even though I hate my boss” kind of way. But in the “we’re whole and complete humans who may function a little differently but that doesn’t mean it’s okay to disrespect us” kind of way. 

I’d like to be able to end this piece on a note of hope. But right now I don’t feel like that’s my job. I’ve told you the situation. What are you going to do about it? How about you make me feel hopeful this time?