Tuesday’s Child: Life in the 47th State
The doctor’s office was located in a run-down strip mall, potholes and shifted pavement interrupting the parking lot. We parked in the handicapped spot, located conveniently farthest from the door, and navigated past the dumpster up the ramp comprised of 3″ vertical gaps between cement slabs. A sign above the door hung crooked and broken.
My daughter and I had come for an appointment set for her by the Illinois Department of Human Services, Division of Rehabilitation Services. This appointment was an effort by the state to “gather more information” about my daughter’s “alleged” disability. The signed document from my daughter’s lifelong orthopedic doctor, her complete medical history and our statements (signed under penalty of perjury) weren’t enough evidence: they needed a doctor with absolutely no knowledge of my daughter or her disorder to make an assessment of how disabled my daughter truly is.
You can probably tell my attitude about this appointment wasn’t exactly open-minded. Not even a little cooperative.
Nevertheless, we signed in and took a seat in the dingy, eight-seat waiting room, alongside two other people. I could hear fairly clearly a conversation from another room, questions from a man, answers from a woman, and surmised that what I was overhearing through the paper-thin walls was a doctor and patient in an exam room. I was not encouraged by the lack of privacy in this office that already did little to rally my confidence. The carpet was stained, the chairs filthy, the surfaces sticky. Twenty minutes into our wait in the grimy waiting room, our cohorts were called back. More people arrived. And more. Eventually, we were twelve strong in a room suited to hold fewer than eight. One of our number was in a wheelchair, one used a cane, one was large enough to take up two chairs. It was not a comfortable fit.
We waited longer. Another 20 minutes later, the girl at the front desk called us back. In the strangest exam room I’ve ever seen–four beds that looked like massage tables, three ancient machines designed to measure unknown body functions, an assortment of mismatched and very worn hand towels, and a half-full laundry basket–we took a seat. I asked if we could close the door, and our host, slightly confused, said yes. She asked a number of basic questions about height, weight, age, then sent us back to the overfilled waiting room. Another four people came in. Two people left.
Finally, another doctor entered the building. We could see her beyond the open reception desk hastily rifling through papers on the counter. She opened the door and called us into the massage-table room. What followed was the standard line of questions we encounter with every new person curious about my daughter: What is the name of your condition? Have you broken any bones? Have you had any surgeries? Are you in pain right now? Can you walk? What do you take for pain? When were you diagnosed? How long have you used a wheelchair? Do you climb stairs?
These were not the questions of a doctor in any way informed about OI, nor did they take a true measure of the effects of severe OI on the life of a young adult. None of the questions dug any deeper than how my daughter presented right this minute, not what happens over the course of a day, or a month. The answers were greeted with clinical detachment in most cases, and in some cases, unprofessional exclamations of surprise. After a 15 minute interview, the doctor said we could go. She would give no hint to the results of her assessment.
I’ve heard for years that my state, Illinois, ranks 47th in providing social services. This is the first time I’ve seen that pejorative in real life. The program for which we were required to visit the doctor is supposedly intended to help people with disabilities pay for the services they need to adapt to everyday life, to be functioning members of society. Services like accessible housing, personal assistants, adaptive equipment are all funded in part by this agency. Some people, like my daughter when she has a fracture, will need personal assistants just to make it through the day. Without assistance when she’s fractured, she is unable to dress or feed herself, and in some cases, she can’t manage her wheelchair.
The process our state has put in place for applying for these services, however, is so difficult I can’t help but wonder if they’re hoping people simply quit rather than pursue efforts with an unyielding bureaucracy. This doctor’s visit is only one piece of the mysterious puzzle; we’ve been told our application hasn’t been received, that it’s been received but it’s pending, that we have been rejected for services, and that my daughter’s name isn’t even in the system yet. And this is but one of three state agencies to which my daughter has applied. We are in holding patterns with the other two; it’s possible we’re stuck in a bureaucratic morass with at least one of those, and we don’t even know it yet.
It is very clear that the system is underfunded, understaffed, and over-utilized. I am certain a certain amount of fraud has occurred to warrant such laborious application oversight. The staff are clearly trained to be skeptical of anyone making an application, to question repeatedly whether this is a “true” disability. We were greeted with this warm reply ourselves, on the phone when we first made contact. But the system that’s in place inherently reduces people to our basest emotions: need, hostility, mistrust, despair. To force already marginalized people into the most squalid, ill-equipped medical office is to reinforce the belief that they aren’t worthy of decent medical care.
This morning, because my daughter was applying for services for the disabled, she was stripped of her dignity. This system effectively pushes the disabled into the “second-class citizen” classification.
All I could think this morning was the line to one of my favorite songs from church: “Whatsoever you do to the least of my brothers, that you do unto me.” By God, we as a society should be striving for better than this.
Meg Currell is a little angry tonight.