Daily Archives: 9 October, 2009

Lucky for us, there’s money to be thrown

accessibility, , ,

One of the many, many things that bothers me about disability & accessibility is how many of the problems can be solved by throwing money at them.

Let me just give the simplest, bare bones problem that’s on my mind this month.

Once a week, Don attends an appointment that is on the other side of the city from us. He has three possible ways of getting there.

First, he can take public transit. There is one bus from our neighbourhood that gets to where he has to go. (This is an improvement – the bus he takes “directly” only recently became wheelchair accessible.) As anyone with a chronic pain condition will tell you, though, taking the bus anywhere can be extremely painful. The bus drops him off a few blocks from where he needs to be, and he “just” has to navigate the non-existent curb cuts and the broken side walks. Then he gets to reverse the whole process, except the return trip is during rush hour, and wow do people get really pissy when a full-time wheelchair user needs a bus during rush hour.

Second, he can attempt to book Access-A-Bus. In our city, Access-A-Bus must be booked a week in advance. Not 8 days in advance, not 6 days in advance, just seven days in advance. You are not guaranteed a space if there are too many people that day. You will get a phone call two days beforehand if you’re going to be on the bus. You have no control over the return trip, other than that there will be one, and you should let them know when you’ll be available. Although Access-A-Bus is free for users, it’s not the most effective way of getting around.

The third option is that Don takes a taxi. It costs about 25$ one way. The taxi can be pre-booked on either end. It usually comes on time. It takes him exactly where he wants to go, drops him off at the door, and picks him back up at the same location. It just blows through a large-ish wad of cash every time.

Don takes a taxi to this appointment a lot. Unlike a lot of people with disabilities, we have access to family financial support. We can afford that 50$ to make sure Don can get to his appointment on time and in a relative degree of comfort.

For other people we know, the options are much smaller: Be in large amounts of pain while trying to get around the city, or don’t go out at all. (Buying a car is also a “throw money at it” solution. It also assumes you can drive, and have a place to put a car.)

People with disabilities are disproportionately poor. Many also have monthly costs that add up pretty quickly, like medications, purchase and repair of mobility aids, doctor’s appointments, etc. They may need to pay interpreters. Some of them have dietary restrictions or food allergies that require “special” food items, like wheat-free flour or lactose-free milk. A lot are no where near as financially privileged as Don and I are, and cannot afford the expense of a pain-limited trip to the doctor.

A well-funded, well-advertised Access-a-Bus program, along with funding increases to ensure that all buses are wheelchair accessible can make such a difference. But that is not the financial priority of my city at the moment. (Apparently, it’s a high-speed ferry of some sort, and a new hockey arena.)

So, instead, aiming to keep Don’s pain levels as low as possible (he’s recovering from surgery at the moment), we throw money at the problem. And thank our lucky stars that there’s money to be thrown at it.

So many others are not nearly so lucky.

How Do We Understand This Experience?

intersectionality, mental health

This the story of the first time I really understood the degree to which intersectionality was key to understanding and addressing mental health issues.

When I was first diagnosed and the subsequent years when we all tried to figure out what was really wrong with me and what medications would allow me to function without too many problems, I had a lot of problems with anxiety. Or hypomania, or mixed state, or whatever people want to call it. But back then I had absolute faith in the power of the DSM-IV, and the medical professionals for which my parents were paying big bucks, to analyze my illness, assign it to a category, and know exactly the protocol to treat me. So back then, I thought of the episodes I was experiencing as panic attacks.

They felt like sheer terror, like my heart was pounding so hard I could feel it through my whole body, like my hands were a blur of shaking, like my muscles were pulled tight beyond their limit. I couldn’t make myself breathe right, taking a short gasp each time my heart thudded. But it was even worse inside my head, where a giant storm raged and kept me from thinking even a full thought because I was so overwhelmed with the thunder of certain and unavoidable bad! harm! doom! destruction! And after ten or fifteen minutes, the storm seemed to pass, and I could take deeper breaths, but felt battered and sore. They were awful and I hated them and resented them for appearing out of nowhere. I was ashamed that I could be so affected by whatever it was that set one off, if that could even be identified. I felt like I had no power to affect them.

Years later, when I no longer carried a bottle of tranquilizers with me just in case I had an attack, I went to a week long training up in the mountains with people from all across California. We were all young professionals with lots of degrees and post-grad degrees from US institutions. One night, I sat with some of the other women at the edge of the forest, in the kind of pitch dark you don’t get very often in California, with all our lights. It was super quiet, with no cars around for miles, and you could hear rustling of animals in the trees. Frankly, it was a little scary, so we of course decided to tell ghost stories.

One of the women told us a story about a road near her house in rural California. She said there was a section of the road where a bad car accident had taken place in the past that when you drove through, you could feel it was haunted. She told us how people from the surrounding area would drive by it to try to see the ghosts. I’m a complete skeptic about anything remotely paranormal or extraterrestrial or psychic, so I wasn’t making much of the story, and neither were some of the other women. But the woman explained that while the people who came to the spot were silly and would never get anything out of it and were wasting their time, she said she was certain that there were ghosts there.

She told us that her grandmother was from one of the indigenous tribes of Mexico and had been considered a holy woman because she could be possessed by ghosts. Her grandmother would be possessed for short episodes, around ten to fifteen minutes, and during the possession she would breathe quickly and her muscles would shake and she felt overcome by fear and evil. And the woman had inherited some of this ability through her grandmother’s bloodline and had similar episodes sometimes. She described the possession in detail and it was if she was reading my psychiatrist’s notes on my experience of a panic attack. Exactly the same – it felt like we had experienced the same thing.

I still remember the feeling I got then, when I realized that what I called a panic attack and thought of as a mental health problem to be treated with medication, she experienced as a ghostly possession and thought of as a valuable ability and a tie to her grandmother. And that neither of those definitions or perspectives or frameworks was any more valid. It was like one of the optical illusions where suddenly what I’d been seeing as a vase was also two faces in profile. That there were two realities that had been co-existing this whole time and I’d just now noticed one of them was there.

I was, and am, still overwhelmed with the implications of that realization. How would a person with her framework interact with a mental health system with the DSM categories and staggering range of medications? What would happen if she described an episode of possession to a physician or psychiatrist? And what would the difference be if I could think of it as a valuable ability instead of a debilitating problem with my brain? Would I even want or get any treatment if that were my perspective? What if my culture valued me for this? How does she handle the prevalent skepticism to ghosts and such? So many things to consider.

And then there’s the remaining question: how many other realities are there? How many other perspectives are on this experience we’ve had? How else can I think about what I experience?