The Bus and the Waiting Room
I'm in the process of trying to get a case manager, possibly an aide of some kind. I've applied at the department of developmental disabilities; their waiting list is months long, and I'd need to make an appeal because I had an unusually late diagnosis, since as a child I was denied an evaluation for autism by a mother in deep denial and probably mildly autistic herself. I've tried to get an appointment with my primary care doctor; I made an appointment in August and still haven't seen them. My last resort was TCN community mental health services, which has in the past kicked me off a case manager's workload for missing an appointment (note: Missing appointments is one of the problems I have thanks to the executive dysfunction part of my disability) and diagnosed me with borderline personality disorder on the strength of a single symptom (self-injury, which is related to autism; I have none of the others). They treated me for quite a while and didn't catch my (apparently glaringly obvious) autism until a nurse-practitioner with an autistic son spoke up. So needless to say I wasn't sanguine about my chances with them, and of course, they have a monopoly on community mental health services in my county, so there's no one else.
With help, I called TCN and was told that they had walk-in intakes only, and only on Tuesdays; and you should really be there before 7:30, or you might not be seen that day. Be prepared to wait.
This was a problem for me, whose "early morning" at that point was somewhere around 2 p.m. But I agreed to try anyway. We talked about how to use the GreeneCATS bus (an assisted transport service on a fixed loop). Over the next week I painstakingly worked through the equivalent of jet lag, and on the next Tuesday I was up at 4 a.m., giving myself plenty of time to ensure I had the chance to get onto that bus. I walked through the morning darkness and made my way to the bus stop, in front of my university, and soon I was sitting and clutching my coins and my "Disabled pass" card. I'd already planned out exactly how I would survive the bus trip and the long hours in the waiting room, and how I would explain what I needed and try to get them to help me with it.
The bus approached... and didn't stop. They drove away without me. Cue meltdown.
Because, seriously, planning for something for a week, something you desperately need? And then realizing--everything just changed--what do I do now?--that's just an invitation for a meltdown.
I got myself to the disability services center at the school, where they still help me despite no longer technically being a student, and I couldn't stop crying, lying on the floor next to the door. Once I'd calmed myself a little, I went inside. It wasn't open yet, but the door was unlocked, and one of the workers there very sensibly offered me a cup of coffee while I explained what had happened. I expressed my very strong desire never to have anything to do with either TCN or GreeneCATS, ever again. Even if things had gone perfectly, I would have spent a week preparing myself for that early-morning bus, spent hours waiting for an appointment with someone who probably knows less about psychology than I do, and possibly gotten some kind of sub-standard assistance, but more likely been referred to the same developmental disability department that had already told me I needed to wait months, possibly a year or more. And then I would've had to survive the trip home, and there would go another few days to recover.
Now imagine what might happen to someone with, say, depression. Ask them to get up at 4 a.m., to wait for hours... they don't have that much willpower. I know I didn't, when I had depression. They could die because they didn't get treatment. The inconvenience of this kind of thing is nearly universal when disabled people try to get services. In many cases, like my own, and that of the hypothetical depressed person trying to wrap their heads around the task of getting to an early-morning appointment that may never even happen, this kind of extreme inconvenience is as effective at blocking access to services as putting a wheelchair repair office up four flights of stairs in a building with no elevator, and then blaming the wheelchair user for not caring enough to drag themselves and their malfunctioning chair up those stairs.
Well, the disability services people at first guessed that I had waited for the bus at the wrong place, or done something else wrong, being a novice public-transport user. So, they finally talked me into trying again (I agreed mostly because I realized I would have to prove that TCN would be no help before they took it off their list). With me in tow, a disability services counselor took me to the bus stop and waited with me until the bus pulled into the bus stop--and then pulled away again without stopping.
I felt vindicated.
Her footsteps sounded angry as we walked back to the disability services office, but I knew she wasn't angry at me. She knows it's hard to get services; she sees every day how much prejudice we face. She tends toward the mama-bear approach when the system fails the students she serves, most of whom are much younger than I am.
This is how they keep us from getting what we need. Poor, disabled, old, young, gay, or the wrong race--we technically have access to everything we need. It's just inconvenient. Except that this kind of inconvenience is not just a minor annoyance, like waiting in line at the bank. This is a barrier to services as real as any other.
If you're part of a minority, any minority really, and you need something that's ostensibly been provided for you, you have to wait. You have to be a good little supplicant and stand in that line until you go nuts from the boredom and you lose all the other things you could have done with that time. I've been both a client and a worker at food pantries, and that's how it was there. People would arrive hours ahead of time, lining the hallways. I tried to create a more efficient system to get people through faster, but the established hierarchy of the food pantry rejected any innovations I could've created. Even passing out forms for people to fill in while they waited was verboten. You wait for food; you wait for medical care; you wait for opportunities that are just handed to people who aren't poor, or disabled, or whatever you happen to be that makes you less-than. If you're not constantly on top of everything, all the paperwork and all the appointments, you lose your chance and you have to wait all over again. Want a job? Spend two hours on the bus, one way, to get there. Want good food? Spend time preparing it; you can't afford ready-made food unless it's junk food. Want medical care? Wait in line. Wait again. You're not important; you're just set aside until someone important has the time to deal with you.
The poorer you are, the less your time is worth. By the time you get to where I am, it's totally normal for a week's preparation for a day-long wait for a fifteen-minute intake appointment to be wasted because the assisted transport bus didn't think you were important enough to stop for.
With help, I called TCN and was told that they had walk-in intakes only, and only on Tuesdays; and you should really be there before 7:30, or you might not be seen that day. Be prepared to wait.
This was a problem for me, whose "early morning" at that point was somewhere around 2 p.m. But I agreed to try anyway. We talked about how to use the GreeneCATS bus (an assisted transport service on a fixed loop). Over the next week I painstakingly worked through the equivalent of jet lag, and on the next Tuesday I was up at 4 a.m., giving myself plenty of time to ensure I had the chance to get onto that bus. I walked through the morning darkness and made my way to the bus stop, in front of my university, and soon I was sitting and clutching my coins and my "Disabled pass" card. I'd already planned out exactly how I would survive the bus trip and the long hours in the waiting room, and how I would explain what I needed and try to get them to help me with it.
The bus approached... and didn't stop. They drove away without me. Cue meltdown.
Because, seriously, planning for something for a week, something you desperately need? And then realizing--everything just changed--what do I do now?--that's just an invitation for a meltdown.
I got myself to the disability services center at the school, where they still help me despite no longer technically being a student, and I couldn't stop crying, lying on the floor next to the door. Once I'd calmed myself a little, I went inside. It wasn't open yet, but the door was unlocked, and one of the workers there very sensibly offered me a cup of coffee while I explained what had happened. I expressed my very strong desire never to have anything to do with either TCN or GreeneCATS, ever again. Even if things had gone perfectly, I would have spent a week preparing myself for that early-morning bus, spent hours waiting for an appointment with someone who probably knows less about psychology than I do, and possibly gotten some kind of sub-standard assistance, but more likely been referred to the same developmental disability department that had already told me I needed to wait months, possibly a year or more. And then I would've had to survive the trip home, and there would go another few days to recover.
Now imagine what might happen to someone with, say, depression. Ask them to get up at 4 a.m., to wait for hours... they don't have that much willpower. I know I didn't, when I had depression. They could die because they didn't get treatment. The inconvenience of this kind of thing is nearly universal when disabled people try to get services. In many cases, like my own, and that of the hypothetical depressed person trying to wrap their heads around the task of getting to an early-morning appointment that may never even happen, this kind of extreme inconvenience is as effective at blocking access to services as putting a wheelchair repair office up four flights of stairs in a building with no elevator, and then blaming the wheelchair user for not caring enough to drag themselves and their malfunctioning chair up those stairs.
Well, the disability services people at first guessed that I had waited for the bus at the wrong place, or done something else wrong, being a novice public-transport user. So, they finally talked me into trying again (I agreed mostly because I realized I would have to prove that TCN would be no help before they took it off their list). With me in tow, a disability services counselor took me to the bus stop and waited with me until the bus pulled into the bus stop--and then pulled away again without stopping.
I felt vindicated.
Her footsteps sounded angry as we walked back to the disability services office, but I knew she wasn't angry at me. She knows it's hard to get services; she sees every day how much prejudice we face. She tends toward the mama-bear approach when the system fails the students she serves, most of whom are much younger than I am.
This is how they keep us from getting what we need. Poor, disabled, old, young, gay, or the wrong race--we technically have access to everything we need. It's just inconvenient. Except that this kind of inconvenience is not just a minor annoyance, like waiting in line at the bank. This is a barrier to services as real as any other.
If you're part of a minority, any minority really, and you need something that's ostensibly been provided for you, you have to wait. You have to be a good little supplicant and stand in that line until you go nuts from the boredom and you lose all the other things you could have done with that time. I've been both a client and a worker at food pantries, and that's how it was there. People would arrive hours ahead of time, lining the hallways. I tried to create a more efficient system to get people through faster, but the established hierarchy of the food pantry rejected any innovations I could've created. Even passing out forms for people to fill in while they waited was verboten. You wait for food; you wait for medical care; you wait for opportunities that are just handed to people who aren't poor, or disabled, or whatever you happen to be that makes you less-than. If you're not constantly on top of everything, all the paperwork and all the appointments, you lose your chance and you have to wait all over again. Want a job? Spend two hours on the bus, one way, to get there. Want good food? Spend time preparing it; you can't afford ready-made food unless it's junk food. Want medical care? Wait in line. Wait again. You're not important; you're just set aside until someone important has the time to deal with you.
The poorer you are, the less your time is worth. By the time you get to where I am, it's totally normal for a week's preparation for a day-long wait for a fifteen-minute intake appointment to be wasted because the assisted transport bus didn't think you were important enough to stop for.